Wow! It's been so long since I updated! Seems like so much has happened and gone on yet nothing has happened or gone on. Do you know what I mean? I have had three different doctor's appointments (and a few small doctor's office visits). I was going to include all of them in this one post but then it would be way too long so I will just link up the entries and post the appointments on the day that they happened. So here they are:
August 22nd - Appointment with my Internist / GI / Cardio
October 28th - Appointment with my GP
November 4th - Appointment with Optometrist
I promise I will update sooner rather than later and do a general update not tied to doctor appointments!
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Thursday, November 7, 2013
Monday, November 4, 2013
November 4th - Optomitrist Appointment
It has been three years since my last appointment and getting glasses and I knew that I was way overdue for testing. Even with my glasses on I have trouble seeing things (mainly the guide on the TV) even though my close vision and driving seemed fine. What a hassle it was though! With ODSP I am covered for eye exams when I bring my medical card, however I had already handed it in to my pharmacist so the 'eye office' had to call the pharmacy and have them send a faxed copy of it for them. Thankfully my pharmacy really knows me well so it was sent almost instantly.
I did the exam and gave the doctor a brief recap of EDS and eyes (she was the only doctor who knew what EDS was before seeing me!). She said that she really didn't like my pressure readings (one was 23.75 the other 24) and wanted to get me some other tests diagnosed and asked if EDS had any bearings on glaucoma. I told her that I had read it could be related and would look into it and then mentioned that my dad has glaucoma. When I said that she called the front desk and had them get other tests set up for me to do that day :(
We did all the tests and both eyes had deteriorated. She said it was kind of odd as generally she only sees that happen in the teenage years and by my age usually the readings don't change that drastically. Both eyes need the prescriptions to increase a full level (so four quarter levels!). She then sounded shocked that she could see everything in my eyes and didn't even need to dilate my pupils. That that was also something that generally only happened in people much younger than me. She said I had very large pupils and that is why I have so many problems with sunlight. She told me to get some really good sun glasses, I might have to find out how I can go about getting prescription sunglasses if I also need everyday glasses as well. I don't know what is covered or what I can get covered.
Good news - My eyes are pretty much the ONLY part of my body that is not being affected by my EDS! Yay! I have no signs of any of the things that can go wrong which is great to hear!!
I then had to go do a field of vision test which was horrible! The eye tech would have my chin in the cup thing and she would adjust it without warning! My neck hasn't been the same since! (Seriously it was / is quite bad :( ). Apparently I tested "borderline" on that test as well so I have to go back in 6 months.
Then at the desk getting everything figured out they tell me that the test I had just done was going to cost me $40 and ODSP didn't cover it. I asked if my form for OHIP coverage would cover it and she said yes but they had no such form! I told them I had it filled in and brought it in a few years ago (they last 5 years) and they said that the had no way to do it. She asked who did it and said she would call the office, I tell her it was years ago and they had changed filing (paper to electronic) and not sure if it would still be there - their response? "If it was filled out then it has to be in your chart" I didn't reply asking why they didn't keep the old one in my chart. So they called the doctor and he said he would do the paper work and send it in.
Since Then - I got a call the next day from the 'eye office' and they told me that my GP had sent the form so it was covered and oh yeah, we found your old form, then hastily told me it was expired (not so sure of that myself!). So I go again in 6 months to see if I have glaucoma :(
I did the exam and gave the doctor a brief recap of EDS and eyes (she was the only doctor who knew what EDS was before seeing me!). She said that she really didn't like my pressure readings (one was 23.75 the other 24) and wanted to get me some other tests diagnosed and asked if EDS had any bearings on glaucoma. I told her that I had read it could be related and would look into it and then mentioned that my dad has glaucoma. When I said that she called the front desk and had them get other tests set up for me to do that day :(
We did all the tests and both eyes had deteriorated. She said it was kind of odd as generally she only sees that happen in the teenage years and by my age usually the readings don't change that drastically. Both eyes need the prescriptions to increase a full level (so four quarter levels!). She then sounded shocked that she could see everything in my eyes and didn't even need to dilate my pupils. That that was also something that generally only happened in people much younger than me. She said I had very large pupils and that is why I have so many problems with sunlight. She told me to get some really good sun glasses, I might have to find out how I can go about getting prescription sunglasses if I also need everyday glasses as well. I don't know what is covered or what I can get covered.
Good news - My eyes are pretty much the ONLY part of my body that is not being affected by my EDS! Yay! I have no signs of any of the things that can go wrong which is great to hear!!
I then had to go do a field of vision test which was horrible! The eye tech would have my chin in the cup thing and she would adjust it without warning! My neck hasn't been the same since! (Seriously it was / is quite bad :( ). Apparently I tested "borderline" on that test as well so I have to go back in 6 months.
Then at the desk getting everything figured out they tell me that the test I had just done was going to cost me $40 and ODSP didn't cover it. I asked if my form for OHIP coverage would cover it and she said yes but they had no such form! I told them I had it filled in and brought it in a few years ago (they last 5 years) and they said that the had no way to do it. She asked who did it and said she would call the office, I tell her it was years ago and they had changed filing (paper to electronic) and not sure if it would still be there - their response? "If it was filled out then it has to be in your chart" I didn't reply asking why they didn't keep the old one in my chart. So they called the doctor and he said he would do the paper work and send it in.
Since Then - I got a call the next day from the 'eye office' and they told me that my GP had sent the form so it was covered and oh yeah, we found your old form, then hastily told me it was expired (not so sure of that myself!). So I go again in 6 months to see if I have glaucoma :(
Monday, October 28, 2013
October 28th - GP Appointment
This was a very very bad appointment. About a week and a half before this appointment I had to go to the office and get a few (10) pills of my breakthrough medication. I did this as I wanted to get my doctor to figure out a new breakthrough medication to help with the pain so I didn't want to get too many of them.
So I got to my appointment with a few things I wanted to go over, it was an appointment for a thyroid check but for me it was more to get him to change things up for my pain levels. I get in and he was happy about my thyroid levels, that they have stabilized and that the dose I am on seems to be the dose that I will be staying on. He asked if I notice and differences and I told him that yes it was helping. I needed a few medications refilled so he did those and then we started in on the pain issue.
I told him that I needed to change my medications and so he asked what I wanted for long term and I told him what we normally switch to and he was fine writing that one up. I asked him if we could try the same total daily dose (90mg) and instead of taking it twice a day (45mg) could I take it every 8 hours (30mg) as the long acting meds don't seem to be lasting the full 12 hours. He did not want to do this because he felt that just changing the medication was enough of a change to my body and that we could revisit that idea when I had my next appointment (I see him every 3 months unless something else pops up). I don't agree but I can see his logic so I will just wait the 3 months and see how it goes.
He then notices one of the medications that I am on and wondered why I was on such a low dose! I told him I had been higher with my old doctor but that the dose I was on was enough to stop the nerve pain in my shoulder. My GP then said he wanted to triple the dose and see if it helped my overall pain levels. I told him I was hesitant about it as quite a few doctor's had prescribed it years ago and it never touched my overall pain and that I really didn't want to increase it. So he told me that he was going to write that I could increase it to triple my dose but that it was up to me (Such a weird statement from him). I really don't want to increase it as this is the medication that caused me to gain almost 15lbs when I started taking it!! I'm trying to lose weight not gain it! Also made me mad because the last time we discussed my headaches and a new medication I wanted to try he said I couldn't strictly because of this medication. I was honestly thinking about discontinuing it and instead he wants me to triple it!
Then I say that I need something new for breakthrough. He asks what I used to use and when I told him he just said 'I am not prescribing' and how it isn't used in practice anymore and how 'dirty' it is. So I asked him what I could use instead. He then proceeds to tell me that I shouldn't need anything for breakthrough with the other medication changes! I was so shocked that I couldn't speak then started almost crying. I told him that wouldn't work, that if I injured myself I needed to have something extra (I had just dislocated my wrist the night before and it was wrapped up so I used that as an example). He finally said well I don't know what to give you so I want you to find what would work best then I will write it for you (WHAT!?!?!). I then asked if I could get some of the old stuff as even though it didn't work well it at least did help more than just plain advil (which I can't take two days in a row or I dislocate like crazy). He then hands me a sheet and wrote it out for 40 pills! I questioned that and he tells me that the last prescription he had written was only for 10 and this was quadruple the amount. I said that the 10 pills where only to cover a 10 day time period as I had wanted him to change it. He fixed it up then told me that all he wants is to get my pain controlled (funny way of showing it). I left the appointment without making my follow-up appointment because I was so upset and mad (and crying because of how mad and upset I was).
I went home and got mad. I had asked my mom to go to the appointment with me as he tends to take me more seriously when she is with me but she didn't want to go so I didn't push it. I came home and I think she felt bad that she didn't go and said we would go back. Because that would look so good and help me with credibility. I just told her I would figure it out.
Since Then: I love my pharmacist! Not only did she completely call him out she worked so hard for me. She asked me why he wouldn't just give me the old med and I told her why and she just looked at me for a minute and said that the fact that no one used it anymore was a surprise to her as she filled it quite often and had no idea as to why he would call it a 'dirty' drug to someone who used it responsibly! I told her how he wanted me to find a new medication to use and she remarks "So he will write what you want - as long as he 'likes' it?" I had to laugh at that. She was on the same wavelength as I was and we both agreed what was the best thing to do. It was late in the day when I talked to her so the doctor wasn't there so she said she would write a note for the pharmacist in the next day so when the office called they would know what was going on. I called the doctor's office the next day and after back and forth calling between me, the office and the pharmacy we finally got it figured out and called in. Can you believe that the doctor's office wanted to even know what dose I should get? Like they couldn't figure it out themselves?!? When I picked it up that night I noticed the note that the other pharmacist wrote and it had on it "Doctor doesn't "like" -(other drug)- doesn't know what to give" then something along the line that me and the pharmacist brainstormed and came up with the answer.
It was a very easy answer and I really really have to question why the doctor couldn't figure it out. The one set of meds was "Drug X Contin" for long term and "Drug X" for breakthrough. So now that I was on "Drug Z Contin" didn't it make sense for me to just get "Drug Z" for breakthrough?
The new breakthrough is helping, was even able to get a way with a half dose a few times before the pain got too bad and it seems to last 2-3 hours (supposed to last 4-6). Unfortunately the long term medication hasn't seemed to really help me. However, I dislocated my shoulder the night I started it as well as made adjustments to my bed (I have a water bed and we had just added some more water and 'burped' it the same day).
So I got to my appointment with a few things I wanted to go over, it was an appointment for a thyroid check but for me it was more to get him to change things up for my pain levels. I get in and he was happy about my thyroid levels, that they have stabilized and that the dose I am on seems to be the dose that I will be staying on. He asked if I notice and differences and I told him that yes it was helping. I needed a few medications refilled so he did those and then we started in on the pain issue.
I told him that I needed to change my medications and so he asked what I wanted for long term and I told him what we normally switch to and he was fine writing that one up. I asked him if we could try the same total daily dose (90mg) and instead of taking it twice a day (45mg) could I take it every 8 hours (30mg) as the long acting meds don't seem to be lasting the full 12 hours. He did not want to do this because he felt that just changing the medication was enough of a change to my body and that we could revisit that idea when I had my next appointment (I see him every 3 months unless something else pops up). I don't agree but I can see his logic so I will just wait the 3 months and see how it goes.
He then notices one of the medications that I am on and wondered why I was on such a low dose! I told him I had been higher with my old doctor but that the dose I was on was enough to stop the nerve pain in my shoulder. My GP then said he wanted to triple the dose and see if it helped my overall pain levels. I told him I was hesitant about it as quite a few doctor's had prescribed it years ago and it never touched my overall pain and that I really didn't want to increase it. So he told me that he was going to write that I could increase it to triple my dose but that it was up to me (Such a weird statement from him). I really don't want to increase it as this is the medication that caused me to gain almost 15lbs when I started taking it!! I'm trying to lose weight not gain it! Also made me mad because the last time we discussed my headaches and a new medication I wanted to try he said I couldn't strictly because of this medication. I was honestly thinking about discontinuing it and instead he wants me to triple it!
Then I say that I need something new for breakthrough. He asks what I used to use and when I told him he just said 'I am not prescribing' and how it isn't used in practice anymore and how 'dirty' it is. So I asked him what I could use instead. He then proceeds to tell me that I shouldn't need anything for breakthrough with the other medication changes! I was so shocked that I couldn't speak then started almost crying. I told him that wouldn't work, that if I injured myself I needed to have something extra (I had just dislocated my wrist the night before and it was wrapped up so I used that as an example). He finally said well I don't know what to give you so I want you to find what would work best then I will write it for you (WHAT!?!?!). I then asked if I could get some of the old stuff as even though it didn't work well it at least did help more than just plain advil (which I can't take two days in a row or I dislocate like crazy). He then hands me a sheet and wrote it out for 40 pills! I questioned that and he tells me that the last prescription he had written was only for 10 and this was quadruple the amount. I said that the 10 pills where only to cover a 10 day time period as I had wanted him to change it. He fixed it up then told me that all he wants is to get my pain controlled (funny way of showing it). I left the appointment without making my follow-up appointment because I was so upset and mad (and crying because of how mad and upset I was).
I went home and got mad. I had asked my mom to go to the appointment with me as he tends to take me more seriously when she is with me but she didn't want to go so I didn't push it. I came home and I think she felt bad that she didn't go and said we would go back. Because that would look so good and help me with credibility. I just told her I would figure it out.
Since Then: I love my pharmacist! Not only did she completely call him out she worked so hard for me. She asked me why he wouldn't just give me the old med and I told her why and she just looked at me for a minute and said that the fact that no one used it anymore was a surprise to her as she filled it quite often and had no idea as to why he would call it a 'dirty' drug to someone who used it responsibly! I told her how he wanted me to find a new medication to use and she remarks "So he will write what you want - as long as he 'likes' it?" I had to laugh at that. She was on the same wavelength as I was and we both agreed what was the best thing to do. It was late in the day when I talked to her so the doctor wasn't there so she said she would write a note for the pharmacist in the next day so when the office called they would know what was going on. I called the doctor's office the next day and after back and forth calling between me, the office and the pharmacy we finally got it figured out and called in. Can you believe that the doctor's office wanted to even know what dose I should get? Like they couldn't figure it out themselves?!? When I picked it up that night I noticed the note that the other pharmacist wrote and it had on it "Doctor doesn't "like" -(other drug)- doesn't know what to give" then something along the line that me and the pharmacist brainstormed and came up with the answer.
It was a very easy answer and I really really have to question why the doctor couldn't figure it out. The one set of meds was "Drug X Contin" for long term and "Drug X" for breakthrough. So now that I was on "Drug Z Contin" didn't it make sense for me to just get "Drug Z" for breakthrough?
The new breakthrough is helping, was even able to get a way with a half dose a few times before the pain got too bad and it seems to last 2-3 hours (supposed to last 4-6). Unfortunately the long term medication hasn't seemed to really help me. However, I dislocated my shoulder the night I started it as well as made adjustments to my bed (I have a water bed and we had just added some more water and 'burped' it the same day).
Thursday, August 22, 2013
Aug 22nd - Internist/GI/Cardio Appointment
Internist Appointment
August 22nd - I saw my internist/cardio/GI and was slightly worried about this because I have been asking her for years if my thyroid was off but she kept testing it and telling me it was fine. Well after the major change in numbers, I am on thyroid medication. I went in and we discussed my beta blocker and she agreed to switch me to a new one and set a dose but told me I could increase it from 1/2 pill to a full pill if I needed to do so as she knows I have my own BP machine at home and do keep very good track of it myself and know when something needs to be increased or decreased. We then got on to the thyroid and she said she would have liked a repeat test before putting me on medication then asked if it was helping and I told her that it most definitely was and she just sat back for a minute and said that 'with me' she probably would have started the medication instantly as well. She then said that with me, we have already learned that even a small change in testing values can cause a very large change in my health. She asked about the anti-biotics and my stomach and I told her that it seems to still be working but I do have to occasionally (every 2-3 months) stop taking the medication for a week, then start it again to avoid tolerance. She was more than happy with this and told me to just keep doing what I was doing and let her know if changes needed to be named.
Since Then - I did have to change the beta blocker and after a few days of mis-communication with the office we got the medication dosage changed. I went off the anti-biotics for a few days as tolerance was starting to happen. However, I had a lot of stomach issues those few days. I was bloated, gained 5lbs and felt so 'full' that I barely ate anything and was on the way to getting sick. I quickly started taking the medication again and I instantly lost those 5lbs and the problems stopped. So I might have to ask the doctor if there is another medication in the same family that I could switch to instead of doing an on-off pattern with the one I have now
.
August 22nd - I saw my internist/cardio/GI and was slightly worried about this because I have been asking her for years if my thyroid was off but she kept testing it and telling me it was fine. Well after the major change in numbers, I am on thyroid medication. I went in and we discussed my beta blocker and she agreed to switch me to a new one and set a dose but told me I could increase it from 1/2 pill to a full pill if I needed to do so as she knows I have my own BP machine at home and do keep very good track of it myself and know when something needs to be increased or decreased. We then got on to the thyroid and she said she would have liked a repeat test before putting me on medication then asked if it was helping and I told her that it most definitely was and she just sat back for a minute and said that 'with me' she probably would have started the medication instantly as well. She then said that with me, we have already learned that even a small change in testing values can cause a very large change in my health. She asked about the anti-biotics and my stomach and I told her that it seems to still be working but I do have to occasionally (every 2-3 months) stop taking the medication for a week, then start it again to avoid tolerance. She was more than happy with this and told me to just keep doing what I was doing and let her know if changes needed to be named.
Since Then - I did have to change the beta blocker and after a few days of mis-communication with the office we got the medication dosage changed. I went off the anti-biotics for a few days as tolerance was starting to happen. However, I had a lot of stomach issues those few days. I was bloated, gained 5lbs and felt so 'full' that I barely ate anything and was on the way to getting sick. I quickly started taking the medication again and I instantly lost those 5lbs and the problems stopped. So I might have to ask the doctor if there is another medication in the same family that I could switch to instead of doing an on-off pattern with the one I have now
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Tuesday, July 30, 2013
July 29th - Doctor's appointment for thyroid levels
First off, last week I had to go and get blood work done to see what my thyroid levels were at so my doctor could adjust my medications if needed to be. I went to my normal place and was slightly worried as I heard a 'strange' voice from the room. Thankfully though my good blood taker, H, then came out, saw me kinda laughed said 'oh' and took off into the bathroom lol. She then came out and told me to come with her. And said to the other lady that it was her unlucky day as all the hard people were coming in. The 'other' lady turned around and I realized it was the lady that retired about two years ago. She turned around and laughed and goes 'Oh yeah, I remember you'. So I am well known in my little town lol. H remembered everything that had to be done (butterfly needle, between my knuckles and I have my own bandaids) and thankfully everything went well and it only took one try. She joked while she was getting things set up that she went to call the next person, saw that it was me and decided she needed to pee now because she never knows how long I will take lol
So I went to my doctor on Monday and had a very quick, efficient and good appointment. My thyroid levels are back in the normal range so I stay on the dose that I am on now. He is very concerned though as we don't know what caused the massive spike three months ago. Because of this he wants to keep a very close eye on it and see me every three months whereas generally he would do longer time frames. I asked him whether this could be the autoimmune disorder that Dr. W always knew I had but couldn't pin down. Dr. O told me that with the connective tissue disorder (that EDS is) and the handful of other disorders that I have, that all of them could be partially autoimmune and probably would never be able to fully pin down without a LOT of testing which wouldn't really accomplish much as I am already on the medications I need to be on. He said that especially since things can come on very fast and very seriously (like the Vitamin D deficiency, low thyroid, etc) that he believes that this is the autoimmune showing it's hand and 'sabotaging' itself. The explanation he gave me made a lot of sense and I think it was basically the conclusion that Dr. W was coming too.
So I go back to get new bloodwork and see my doctor in three months and just stay on what I am on as I am 'stable'. The next appointment my mom will be coming with me as we need to go over my pain medications again and I don't agree to his thoughts about my breakthrough medications so I need back-up lol.
So I went to my doctor on Monday and had a very quick, efficient and good appointment. My thyroid levels are back in the normal range so I stay on the dose that I am on now. He is very concerned though as we don't know what caused the massive spike three months ago. Because of this he wants to keep a very close eye on it and see me every three months whereas generally he would do longer time frames. I asked him whether this could be the autoimmune disorder that Dr. W always knew I had but couldn't pin down. Dr. O told me that with the connective tissue disorder (that EDS is) and the handful of other disorders that I have, that all of them could be partially autoimmune and probably would never be able to fully pin down without a LOT of testing which wouldn't really accomplish much as I am already on the medications I need to be on. He said that especially since things can come on very fast and very seriously (like the Vitamin D deficiency, low thyroid, etc) that he believes that this is the autoimmune showing it's hand and 'sabotaging' itself. The explanation he gave me made a lot of sense and I think it was basically the conclusion that Dr. W was coming too.
So I go back to get new bloodwork and see my doctor in three months and just stay on what I am on as I am 'stable'. The next appointment my mom will be coming with me as we need to go over my pain medications again and I don't agree to his thoughts about my breakthrough medications so I need back-up lol.
June 29th - Serious Knee Injury and Family Stuff
Yet again it has been way to long between posts. Not much has been going on medically wise since starting the thyroid medications and things have just been pretty quiet. My nephew finished grade six with very good marks for him, he amazingly got his junior black belt in kenpo karate at only 11 and things were nice and settled with no word from my brother and I was even able to help out a neighbour by tutoring her grandson so he can get his high school diploma. We are going to the cottage at the end of August but that was the only thing we had planned for the entire summer so mom and I figured that we would take K and head up to my grandma's house for a week once he was out of school. We got there, got unpacked and settled in and things seemed to be going well... until that Saturday (29th).
We (me, mom, grandma and cousin) went to go and do some grocery shopping. After a long (and sweaty!) trip to the store we got groceries for two different family's week of shopping and headed home. We got home and I was on the back bench seat so was kinda stuck until most of the groceries had been unloaded. When it was done to only a few items, I went to push a case of water forward with my right leg and ended up dislocating my knee laterally and pushed it up out of the joint. Mom and my cousin continued to empty the van and then mom noticed that I was pale white, sweaty and grabbing my knee so helped me out of the van, rolled her eyes at how I dislocated it and I went in to the living room with an ice pack and mom went to get me my medications and a drink. It sucked and I was very grumpy about it. No one else seemed to really understand what happened (or didn't believe that I could do that much serious damage just from pushing something with my foot). Basically stayed off it the rest of the day and kept it elevated, wrapped and iced (thankfully I always bring my own ice packs). Went to bed that night with a pillow under my knee, iced strapped to it and loaded up on pain meds.
On Sunday we headed out to the beach to my aunt's house for Canada Day celebrations. Spent most of the day just sitting with my knee straight and staying off it as much as I could. Lost out on fun time though as I couldn't go to mini golf with the kids, to get snacks with my cousins or do a bit of shopping on the strip. Wasn't very happy. We headed to the beach to watch the fireworks and all my cousins and the kids wanted to go to the strip to get treats and go to an arcade. No thought to the fact that I wouldn't be able to go of course but then mom remembered that we do keep a crutch in the van so I was able to hobble along behind them. Thankfully the kids seemed to stay back a bit and stay with me. Went back for the fireworks then back to my grandma's house.
All hell broke loose on the Wednesday when my cousin had an 'incident' that through everything out of place and added a LOT of stress to the house. The fact that my knee was injured didn't seem to matter anymore as I had been 'replaced' and was then getting asked to do favours for my grandma and my mom. Don't even want to get into what happened but it was typical drama for the person and the rest of the entire visit was all about my poor cousin.
I was feeling a bit better the following Sunday and thought I was okay to go with my two cousins, their two kids and my nephew to his work's summer party. I thought that it was a place with a lot of places to sit down, I wouldn't have to do too much walking and my nephew could just go off and be with his cousins while I sat. I had even packed a book into the car so if I could find a place I could read. That's a laugh! Like always the 'adults' wanted to do what they wanted to do (eat lunch) and then the kids wanted to do what they wanted to do (a scavenger hunt that ended in 30 minutes that they could win good prizes with). Well the 'adults' just said fine and headed to get lunch leaving me standing with three kids (15, 12, and 11) which I were not going to let go on their own! So I did an entire circuit of this park not once but twice while the other 'adults' ate lunch. Then I needed a drink so they told me to go get one in the gazebo, well there was nothing so I said I needed to get to the front to get a drink. Well it was 'let the kids ride this ride first', 'oh they like this ride', 'you guys should do that', 'look at the cute baby animals' and finally 'let's play our round of mini golf cause it's pretty empty right now'. Then I had to go back out to the car to get the kids swim stuff and I didn't have a handicap spot because they had been late getting ready to leave (and I had been up long before we left!). We saw an opening then at the handicap spot so I moved the van closer. The kids wanted to look in the store so I left my backpack with my cousin to watch, looked in the store and came out to find my bag sitting all alone where I left it with my cousin quite a ways away. Then I finally got a drink!!! After a few yards of me limping and being lopsided because I had a full back pack on my shoulder the oldest cousin finally took it from me. The kids did the water park thing while we sat at the patio and then my cousin had an 'episode' that was embarrassing her husband so we had to leave. I had told my nephew that he couldn't get fries because that wasn't fair to the other kids, well I go to the bathroom and find the oldest cousin eating fries and gravy so I gave in and got my nephew fries to eat. I apparently looked really bad at this point because the oldest kid looked at me, got up from the picnic table, bought me a bottle of water and told me to drink it. I was very thankfully as the pop I got early was done in two seconds as I was so thirsty and I would finally be able to take my pain meds. We finally got home and I was glad the day was over!
The next day I literally did not get out of bed. I was so dehydrated that I couldn't stand up without passing out and my pain levels were so high that I knew I was going to be in a horrible mood if anyone said anything. And I was right when I went out to get a drink and mom goes 'Well isn't it miss. anti-social', so I just got my drink and went back to bed.
Thankfully after one month from when I injured it my knee is feeling somewhat better. I still think that I did some damage to the tendon but I have no doctor to go to in order to see if I did any damage. Going to wait until my next appointment (three months from now) and ask for a new MRI done on it to see if anything is messed up. Unfortunately even if it is, no doctor will touch me. Because of the injury, sleeping on a hard bed and all the stress (which makes pain worse for me as I tense up more) I went through three months worth of pain medications in only two months. Thankfully when I explained it to the nurse at my doctor's office she didn't hesitate and had my doctor write me a new three months worth of meds. I am still taking more than I normally would because of it but down from what I was taking.
We (me, mom, grandma and cousin) went to go and do some grocery shopping. After a long (and sweaty!) trip to the store we got groceries for two different family's week of shopping and headed home. We got home and I was on the back bench seat so was kinda stuck until most of the groceries had been unloaded. When it was done to only a few items, I went to push a case of water forward with my right leg and ended up dislocating my knee laterally and pushed it up out of the joint. Mom and my cousin continued to empty the van and then mom noticed that I was pale white, sweaty and grabbing my knee so helped me out of the van, rolled her eyes at how I dislocated it and I went in to the living room with an ice pack and mom went to get me my medications and a drink. It sucked and I was very grumpy about it. No one else seemed to really understand what happened (or didn't believe that I could do that much serious damage just from pushing something with my foot). Basically stayed off it the rest of the day and kept it elevated, wrapped and iced (thankfully I always bring my own ice packs). Went to bed that night with a pillow under my knee, iced strapped to it and loaded up on pain meds.
On Sunday we headed out to the beach to my aunt's house for Canada Day celebrations. Spent most of the day just sitting with my knee straight and staying off it as much as I could. Lost out on fun time though as I couldn't go to mini golf with the kids, to get snacks with my cousins or do a bit of shopping on the strip. Wasn't very happy. We headed to the beach to watch the fireworks and all my cousins and the kids wanted to go to the strip to get treats and go to an arcade. No thought to the fact that I wouldn't be able to go of course but then mom remembered that we do keep a crutch in the van so I was able to hobble along behind them. Thankfully the kids seemed to stay back a bit and stay with me. Went back for the fireworks then back to my grandma's house.
All hell broke loose on the Wednesday when my cousin had an 'incident' that through everything out of place and added a LOT of stress to the house. The fact that my knee was injured didn't seem to matter anymore as I had been 'replaced' and was then getting asked to do favours for my grandma and my mom. Don't even want to get into what happened but it was typical drama for the person and the rest of the entire visit was all about my poor cousin.
I was feeling a bit better the following Sunday and thought I was okay to go with my two cousins, their two kids and my nephew to his work's summer party. I thought that it was a place with a lot of places to sit down, I wouldn't have to do too much walking and my nephew could just go off and be with his cousins while I sat. I had even packed a book into the car so if I could find a place I could read. That's a laugh! Like always the 'adults' wanted to do what they wanted to do (eat lunch) and then the kids wanted to do what they wanted to do (a scavenger hunt that ended in 30 minutes that they could win good prizes with). Well the 'adults' just said fine and headed to get lunch leaving me standing with three kids (15, 12, and 11) which I were not going to let go on their own! So I did an entire circuit of this park not once but twice while the other 'adults' ate lunch. Then I needed a drink so they told me to go get one in the gazebo, well there was nothing so I said I needed to get to the front to get a drink. Well it was 'let the kids ride this ride first', 'oh they like this ride', 'you guys should do that', 'look at the cute baby animals' and finally 'let's play our round of mini golf cause it's pretty empty right now'. Then I had to go back out to the car to get the kids swim stuff and I didn't have a handicap spot because they had been late getting ready to leave (and I had been up long before we left!). We saw an opening then at the handicap spot so I moved the van closer. The kids wanted to look in the store so I left my backpack with my cousin to watch, looked in the store and came out to find my bag sitting all alone where I left it with my cousin quite a ways away. Then I finally got a drink!!! After a few yards of me limping and being lopsided because I had a full back pack on my shoulder the oldest cousin finally took it from me. The kids did the water park thing while we sat at the patio and then my cousin had an 'episode' that was embarrassing her husband so we had to leave. I had told my nephew that he couldn't get fries because that wasn't fair to the other kids, well I go to the bathroom and find the oldest cousin eating fries and gravy so I gave in and got my nephew fries to eat. I apparently looked really bad at this point because the oldest kid looked at me, got up from the picnic table, bought me a bottle of water and told me to drink it. I was very thankfully as the pop I got early was done in two seconds as I was so thirsty and I would finally be able to take my pain meds. We finally got home and I was glad the day was over!
The next day I literally did not get out of bed. I was so dehydrated that I couldn't stand up without passing out and my pain levels were so high that I knew I was going to be in a horrible mood if anyone said anything. And I was right when I went out to get a drink and mom goes 'Well isn't it miss. anti-social', so I just got my drink and went back to bed.
Thankfully after one month from when I injured it my knee is feeling somewhat better. I still think that I did some damage to the tendon but I have no doctor to go to in order to see if I did any damage. Going to wait until my next appointment (three months from now) and ask for a new MRI done on it to see if anything is messed up. Unfortunately even if it is, no doctor will touch me. Because of the injury, sleeping on a hard bed and all the stress (which makes pain worse for me as I tense up more) I went through three months worth of pain medications in only two months. Thankfully when I explained it to the nurse at my doctor's office she didn't hesitate and had my doctor write me a new three months worth of meds. I am still taking more than I normally would because of it but down from what I was taking.
Thursday, June 6, 2013
May 2nd - Doctor's Appointment (Hypothyroidism)
Wow, I have just had no motivation or ambition in such a long time and it's been well over a month from when this appointment actually happened! This appointment was actually just a follow up from the blood work and bone density tests that I had done over the last few months. I actually went to the office with my dad as he had an appointment in the time slot after mine (but he did not come in to my appointment with me).
So, just like a normal appointment P comes and brings me to the back room and asks me they age old question as to why I am there. We go through the normal of blood pressure and weight (I don't like this part lol). I then tell her that I need refills of a few medications, had planned to ask my doctor to re-evaluate his stance about my breakthrough medications but figured I would wait and judge his stance when I got in to him. I also needed to get the results of the bone density test I had done a few months ago and the blood work I had done. As normal I asked to get a copy for my personal records (technically they should charge me for this but in my situation they all agree that me having test results is a good thing to help protect me if I go to a new doctor) so she printed out copies of both tests and handed them to me then sent me over to the next room to wait for the doctor. Of course I had to look.
The bone density scan showed basically nothing except whatever it means about what's going on around the one eye socket and that I have actually have had more damage in a few areas that I knew where getting worse. However the blood work results shocked me. It showed off that my Vitamin D levels are (very slowly!) increasing even though I am still very deficient and should be taking about 8000 IU's daily in drop form (easier to absorb with my messed up stomach). My C-Reactive Protein is still quite elevated but my GP doesn't seem to think this is anything to worry about as it could just be because of the EDS issues that I do have. My cholesterol was slightly high and my B12 levels where low but nothing to worry about. Then was the one that truly shocked me - my thyroid!
I am sure I have mentioned before that I have been thinking that this is a problem for quite a while now even though my internist strictly said that it was working perfectly. I figured it was fine and hadn't given it another thought in quite a long time honestly. When I asked to get blood work done (I always go in and ask to get my annual blood work requisition forms a few weeks before I have an appointment so I don't waste time going through an appointment just to get it ordered). So here I am looking at my papers and out jumps my TSH levels being 'extreme-high' at a level of 6.9! I am told that this is a very big jump in numbers (I get it tested yearly) and a very high value and that I should be hugely symptomatic. I am very confused at this and trying to wrap my head around it.
My doctor comes in, looks at my blood work and says 'No wonder you feel horrible'. I knew at this point the prescriptions I was going to ask about was out of the question as this was going to take up the appointment. He starts to tell me that my thyroid isn't working much and that I definitely needed to get this settled out. He starts drawing on a paper a line and says "This is where we start medication, at 25mg, but this will definitely be too low for you so we will start you at 50mg and test again in three months as to how fast we have to increase it to get your levels stable". He then tells me that the fatigue, head-aches, increased pain, sleeping problems etc could all be because of this. He originally was going to change one of my medications around but decided against it as he wanted me to be stable as I was and not change anything while working out the thyroid problem. He talked some more and told me that I was going to be on the 50mg dose for three months, get blood work done and then see him to figure out what the next dose would be and repeat it until we get a stable level. He also kinda sighed and looked at me and says, this is another one that you will be on for life. Which was kind of a relief (his reaction not being on it) as he has finally realised that despite the amount of medications that I am on, I want to be on the absolute minimum that I can possibly get by on. He hands me the papers (prescriptions that took up three pages, the test results back, and new blood work papers) and tells me that I will feel a lot better when we finally get the levels at a stable level.
As we are leaving the office dad pipes up and says, "So your thyroid stopped working huh, I guess your at that age when everything starts to fall apart". First off I was kind of taken aback that the doctor had told him (even though he knows we are an open family and mom comes with me to most appointments) and then that he thought that 31 was an appropriate age to start falling apart! We went to the pharmacist and she went through all the instructions about the medications and gave me some pamphlets about hypothyroidism.
When I got home I looked up hypothyroidism and started to feel a bit of hope that a bunch of the problems I am experiencing could be because of the thyroid and getting it under check could stop these problems! I also am wondering if I actually have the auto-immune version as it seems to make more sense medically, and could also explain the c-rp and feelings that my rheumy always had about me having an auto-immune disorder. I will ask my GP about it when I go back to see him at the end of July.
This has kind of thrown my for a loop honestly. For the past decade the only things I have been diagnosed with have been things that I researched symptoms, connections to EDS, specialists, treatment and testing and taken it all to my doctors and got the diagnosis. This one I had no clue was coming. I figured I would walk out of the office with my prescriptions refills and test results with not issues. Instead I walk out with another prescription for the rest of my life, follow-up tests and appointments. Just an odd feeling.
As a note as of today (June 6th) I certainly hope we can get my thyroid levels figured out fast! I have felt horrible ever since starting the medications. We have been having freaky and unstable weather around here that would normally cause problems but it feels like it's more involved than just the weather. Honestly, I think some mild depression has set in as well since this was a shock and something that is pretty important to my health. Will be interesting to see what my internist says when I see her later this summer after years of her telling me my thyroid was fine and I had no symptoms of it.
Based on Wikipedia's site on hypothyroidism I have 10 out of 15 of the early symptoms, 7 or 8 out of 14 of the later symptoms and 9 or 10 of the 20 uncommon symptoms.
So, just like a normal appointment P comes and brings me to the back room and asks me they age old question as to why I am there. We go through the normal of blood pressure and weight (I don't like this part lol). I then tell her that I need refills of a few medications, had planned to ask my doctor to re-evaluate his stance about my breakthrough medications but figured I would wait and judge his stance when I got in to him. I also needed to get the results of the bone density test I had done a few months ago and the blood work I had done. As normal I asked to get a copy for my personal records (technically they should charge me for this but in my situation they all agree that me having test results is a good thing to help protect me if I go to a new doctor) so she printed out copies of both tests and handed them to me then sent me over to the next room to wait for the doctor. Of course I had to look.
The bone density scan showed basically nothing except whatever it means about what's going on around the one eye socket and that I have actually have had more damage in a few areas that I knew where getting worse. However the blood work results shocked me. It showed off that my Vitamin D levels are (very slowly!) increasing even though I am still very deficient and should be taking about 8000 IU's daily in drop form (easier to absorb with my messed up stomach). My C-Reactive Protein is still quite elevated but my GP doesn't seem to think this is anything to worry about as it could just be because of the EDS issues that I do have. My cholesterol was slightly high and my B12 levels where low but nothing to worry about. Then was the one that truly shocked me - my thyroid!
I am sure I have mentioned before that I have been thinking that this is a problem for quite a while now even though my internist strictly said that it was working perfectly. I figured it was fine and hadn't given it another thought in quite a long time honestly. When I asked to get blood work done (I always go in and ask to get my annual blood work requisition forms a few weeks before I have an appointment so I don't waste time going through an appointment just to get it ordered). So here I am looking at my papers and out jumps my TSH levels being 'extreme-high' at a level of 6.9! I am told that this is a very big jump in numbers (I get it tested yearly) and a very high value and that I should be hugely symptomatic. I am very confused at this and trying to wrap my head around it.
My doctor comes in, looks at my blood work and says 'No wonder you feel horrible'. I knew at this point the prescriptions I was going to ask about was out of the question as this was going to take up the appointment. He starts to tell me that my thyroid isn't working much and that I definitely needed to get this settled out. He starts drawing on a paper a line and says "This is where we start medication, at 25mg, but this will definitely be too low for you so we will start you at 50mg and test again in three months as to how fast we have to increase it to get your levels stable". He then tells me that the fatigue, head-aches, increased pain, sleeping problems etc could all be because of this. He originally was going to change one of my medications around but decided against it as he wanted me to be stable as I was and not change anything while working out the thyroid problem. He talked some more and told me that I was going to be on the 50mg dose for three months, get blood work done and then see him to figure out what the next dose would be and repeat it until we get a stable level. He also kinda sighed and looked at me and says, this is another one that you will be on for life. Which was kind of a relief (his reaction not being on it) as he has finally realised that despite the amount of medications that I am on, I want to be on the absolute minimum that I can possibly get by on. He hands me the papers (prescriptions that took up three pages, the test results back, and new blood work papers) and tells me that I will feel a lot better when we finally get the levels at a stable level.
As we are leaving the office dad pipes up and says, "So your thyroid stopped working huh, I guess your at that age when everything starts to fall apart". First off I was kind of taken aback that the doctor had told him (even though he knows we are an open family and mom comes with me to most appointments) and then that he thought that 31 was an appropriate age to start falling apart! We went to the pharmacist and she went through all the instructions about the medications and gave me some pamphlets about hypothyroidism.
When I got home I looked up hypothyroidism and started to feel a bit of hope that a bunch of the problems I am experiencing could be because of the thyroid and getting it under check could stop these problems! I also am wondering if I actually have the auto-immune version as it seems to make more sense medically, and could also explain the c-rp and feelings that my rheumy always had about me having an auto-immune disorder. I will ask my GP about it when I go back to see him at the end of July.
This has kind of thrown my for a loop honestly. For the past decade the only things I have been diagnosed with have been things that I researched symptoms, connections to EDS, specialists, treatment and testing and taken it all to my doctors and got the diagnosis. This one I had no clue was coming. I figured I would walk out of the office with my prescriptions refills and test results with not issues. Instead I walk out with another prescription for the rest of my life, follow-up tests and appointments. Just an odd feeling.
As a note as of today (June 6th) I certainly hope we can get my thyroid levels figured out fast! I have felt horrible ever since starting the medications. We have been having freaky and unstable weather around here that would normally cause problems but it feels like it's more involved than just the weather. Honestly, I think some mild depression has set in as well since this was a shock and something that is pretty important to my health. Will be interesting to see what my internist says when I see her later this summer after years of her telling me my thyroid was fine and I had no symptoms of it.
Based on Wikipedia's site on hypothyroidism I have 10 out of 15 of the early symptoms, 7 or 8 out of 14 of the later symptoms and 9 or 10 of the 20 uncommon symptoms.
Thursday, May 9, 2013
Bloodwork - April 16th
I am not going to post all of the results of the bloodwork I had done but these are the values that are not in the normal range:
The C-Reactive Protein results weren't surprising either as they have been raised the last few times they were tested but my GP just brushes them aside as being inflammation from EDS, even though I try to tell him that EDS does not cause inflammation.
RBC and Lymphocytes being raised I have no clue what they really mean. Apparently RBC can be raised if you are dehydrated which could make sense as I had to fast for the testing. I have looked and if you have the flu your lymphocyte levels can be raised. Since it is such a small deviation from normal values and that I have been fighting illness for months now, I imagine these levels aren't too surprising.
The TSH was shocking! But that will be in another post to come, hopefully this weekend :)
- RBC: 5.36 (4.00 - 5.10)
- Lymphocytes: 3.6 (1.0 - 3.5)
- B12: 191 (198 - 615)
- TSH: 6.90 (0.35 - 5.00)
- C-Reactive Protein: 28 (<8)
- Vitamin D: 38 (75 - 250)
The C-Reactive Protein results weren't surprising either as they have been raised the last few times they were tested but my GP just brushes them aside as being inflammation from EDS, even though I try to tell him that EDS does not cause inflammation.
RBC and Lymphocytes being raised I have no clue what they really mean. Apparently RBC can be raised if you are dehydrated which could make sense as I had to fast for the testing. I have looked and if you have the flu your lymphocyte levels can be raised. Since it is such a small deviation from normal values and that I have been fighting illness for months now, I imagine these levels aren't too surprising.
The TSH was shocking! But that will be in another post to come, hopefully this weekend :)
Internist Appointment - February 7th
Okay, I am trying this for the last time! I have tried to post an entry about this appointment many times over the last few months and always something happens and I lose the entire entry. Since I have written this so many times, as well as it has been so long since the appointment, I will probably forget quite a bit of stuff but here is the basics. It was interesting as Dr. C leads us (mom and I, she goes with me to specialists appointments as back up and her own opinions on my health) back to the office and introduces me to a student and asks if it is okay for her to sit in on the appointment too but that if I don't want her to that is perfectly okay. Obviously as an EDSer I took this as an opportunity that I might be able to educate a student on EDS.
We get settled in and she briefly goes over my history of EDS, autonomic dysfunction and gastroparesis for the student to get caught up and then she asks how I am doing. I tell her that on the whole things are pretty good but I do need to change one of my medications. She asks the student what she would use in my situation and she said a beta blocker then Dr. C goes into explaining to her that I have been on beta blockers for years now and that for some strange reason we have found that I benefit greatly from alternating my beta blockers every year or so as I get tolerant. Dr. C asks which beta blockers I have used and then asks me which one I want to be on next. I had decided that atenolol would be what would be best for me next passed on my history and symptoms. Dr. C turns to the student and says that I am highly involved in my own medical problems and that I know more about my body, conditions and what medications could help than any doctor will ever know. We work on decided the dosage as the last time I was on atenolol I was only taking it once a day and that a few years ago we switched to a twice a day dosage instead of only one as it stays in my system better and controls my symptoms better. She comes up with a dosage and asks the student what she thinks. She says she has never heard of twice a day dosing and wondered about if the dose would be too much for me. Dr. C just smiles and goes "Stacey is very smart, she has her own blood pressure machine at home and keeps track of symptoms and levels. I trust her to work within the medications and levels to find the best for her" and that I have changed my dosage in the past as she was confident I was capable of making choices.
I then told Dr. C that I noticed something quite strange a few months ago. I told her that I had a sinus infection and was put on Biaxin for a week and the entire family noticed that I was actually eating at least one full meal a day! I generally might have two snacks and a half serving of a supper meal. We know this is because of the gastroparesis and autonomic issues but just left it at that. Dr. C just grins from ear to ear and looks at the student and asks the student if she can explain. The student looks hesitant and says that she has heard of a certain set of anti-biotics can help with stomach problems and then she mentioned a certain medication that Dr. C didn't agree with so had her write down to look up that medication as well as the medication that she was going to try me on in connection with gastroparesis. She then looks at me and says "I am sure you did your own research and are willing to experiment", which I said of course! She tells us that she wants to try me on erythromycin twice a day, one about a 30-60 minutes before lunch and another before supper. Mom chimes in now that my sleeping schedule is so messed up that I never have lunch and really only eat a partial meal at supper time. Again, Dr. C says that she would like me to take it before supper for sure every day but that if I am up and going to be eating lunch then I can take one then. Basically telling me again to do my own trials about it. So she started me on 250mg of Erythromycin daily before meals and wants me to try it for two weeks and then call her back and if it works then she will write for another six months and then have me come in again to talk about it. At this point she looks at the student, then mom then me and says she has to confess something. She has tried this medication quite a few times with patients and has NEVER had it work. Then she kind of laughs and says that I am a guinea pig anyways and using some strange logic that meant that it should work really well on me lol.
As she was writing up the prescriptions I started talking to the student and asked her if she had seen EDS and if she knew anything about it. She tells me that she has seen someone with it when she was doing family practice and that she knew about all the 'tricks' and that they did discuss it a fair amount at school. So it sounds as if EDS is starting to get taught a bit more every year which would be amazing! Of course as we are leaving Dr. C jokes "Did you notice I didn't bring up the colonoscopy?" and we both just laughed lol (When she did the endoscope she mentioned right before they 'knocked me out' that I would most likely have to do a colonoscopy next. Well with the horror of the first scope neither of us even want to consider doing a colonoscopy! She says she will have me put under a full general anesthetic when it comes time that I really do need one).
Since I am just posting this now I will tell you the results of the medications...... They are amazing!!!! I am eating two or three snacks a day as well as a full meal at supper time! I have been on it for three months now and feel so much better! We always kinda wondered if I was malnourished but we know for a fact now that I was malnourished and suffering from it for a very long time. I have so much more energy! It's just amazing the difference one little pill makes. I was even getting by with 2 or 3 hours less sleep a night (until the entire family caught this horrible cold that we have been passing back and forth for a few months now!). I have not seen Dr. C since she prescribed it but she did renew my prescriptions for another 6ish months and I see her again later on in the summer.
We get settled in and she briefly goes over my history of EDS, autonomic dysfunction and gastroparesis for the student to get caught up and then she asks how I am doing. I tell her that on the whole things are pretty good but I do need to change one of my medications. She asks the student what she would use in my situation and she said a beta blocker then Dr. C goes into explaining to her that I have been on beta blockers for years now and that for some strange reason we have found that I benefit greatly from alternating my beta blockers every year or so as I get tolerant. Dr. C asks which beta blockers I have used and then asks me which one I want to be on next. I had decided that atenolol would be what would be best for me next passed on my history and symptoms. Dr. C turns to the student and says that I am highly involved in my own medical problems and that I know more about my body, conditions and what medications could help than any doctor will ever know. We work on decided the dosage as the last time I was on atenolol I was only taking it once a day and that a few years ago we switched to a twice a day dosage instead of only one as it stays in my system better and controls my symptoms better. She comes up with a dosage and asks the student what she thinks. She says she has never heard of twice a day dosing and wondered about if the dose would be too much for me. Dr. C just smiles and goes "Stacey is very smart, she has her own blood pressure machine at home and keeps track of symptoms and levels. I trust her to work within the medications and levels to find the best for her" and that I have changed my dosage in the past as she was confident I was capable of making choices.
I then told Dr. C that I noticed something quite strange a few months ago. I told her that I had a sinus infection and was put on Biaxin for a week and the entire family noticed that I was actually eating at least one full meal a day! I generally might have two snacks and a half serving of a supper meal. We know this is because of the gastroparesis and autonomic issues but just left it at that. Dr. C just grins from ear to ear and looks at the student and asks the student if she can explain. The student looks hesitant and says that she has heard of a certain set of anti-biotics can help with stomach problems and then she mentioned a certain medication that Dr. C didn't agree with so had her write down to look up that medication as well as the medication that she was going to try me on in connection with gastroparesis. She then looks at me and says "I am sure you did your own research and are willing to experiment", which I said of course! She tells us that she wants to try me on erythromycin twice a day, one about a 30-60 minutes before lunch and another before supper. Mom chimes in now that my sleeping schedule is so messed up that I never have lunch and really only eat a partial meal at supper time. Again, Dr. C says that she would like me to take it before supper for sure every day but that if I am up and going to be eating lunch then I can take one then. Basically telling me again to do my own trials about it. So she started me on 250mg of Erythromycin daily before meals and wants me to try it for two weeks and then call her back and if it works then she will write for another six months and then have me come in again to talk about it. At this point she looks at the student, then mom then me and says she has to confess something. She has tried this medication quite a few times with patients and has NEVER had it work. Then she kind of laughs and says that I am a guinea pig anyways and using some strange logic that meant that it should work really well on me lol.
As she was writing up the prescriptions I started talking to the student and asked her if she had seen EDS and if she knew anything about it. She tells me that she has seen someone with it when she was doing family practice and that she knew about all the 'tricks' and that they did discuss it a fair amount at school. So it sounds as if EDS is starting to get taught a bit more every year which would be amazing! Of course as we are leaving Dr. C jokes "Did you notice I didn't bring up the colonoscopy?" and we both just laughed lol (When she did the endoscope she mentioned right before they 'knocked me out' that I would most likely have to do a colonoscopy next. Well with the horror of the first scope neither of us even want to consider doing a colonoscopy! She says she will have me put under a full general anesthetic when it comes time that I really do need one).
Since I am just posting this now I will tell you the results of the medications...... They are amazing!!!! I am eating two or three snacks a day as well as a full meal at supper time! I have been on it for three months now and feel so much better! We always kinda wondered if I was malnourished but we know for a fact now that I was malnourished and suffering from it for a very long time. I have so much more energy! It's just amazing the difference one little pill makes. I was even getting by with 2 or 3 hours less sleep a night (until the entire family caught this horrible cold that we have been passing back and forth for a few months now!). I have not seen Dr. C since she prescribed it but she did renew my prescriptions for another 6ish months and I see her again later on in the summer.
Saturday, March 16, 2013
Bone Scan - February 4th
So this test was all set out really fast! I saw my GP on Thursday afternoon, got a call Friday for an apt and was in for the test Monday morning. I touched on this in my post about going to my GP, my rheumy had a handful of tests that he liked repeating on a consistant basis (bone scan, dexa scan, neck x-rays/MRI's and lots of different blood work). Mainly his goal (which I loved!) was to look for problems before they started. This is how we found out about the osteoporosis so quickly. He believed that we knew what was going to occur in the future (osteoporosis, auto-immune problems, disc changes in my neck) and it was better to have a base line test and keep a close watch to see if anything started to show changes. At this point I had not had a bone scan* different test that I always make sure that for any type of scan I wear yoga pants & a sports bra so that there is absolutely nothing metallic that can interfere (I haven't had to put on a hospital gown in years :D). So I go into the room and already know that something is different this time as instead of just sitting in a chair she has me get up on the bed and get all comfy with pillows and supports and stuff. Once I am comfortable she then brings out the metal case with the dye in it. I give her the 'my veins are...' spiel so she says she will put in an IV start first and then put the dye through that. She used the vein on the back of my right hand and got it in on the very first try!! She then starts up the machine and explains to me that this first test will show if there is any blood pooling in areas of the body. It was a short test maybe 15 minutes and then I was on my way for the next few hours. Thankfully she told me that I was to be back at 1pm instead of the 4pm time slot I was initially given!
We did our normal thing, went out and got some breakfast at McD's (I love their hash browns and their egg McMuffins remind me of my times at university. I only get this 'meal' if I have early morning doctor's appointments / tests). We did some shopping and just killing time, all the while I had a bottle of water with me and I had to have drank at least 1.5 liters before going back to the hospital! (They want you to drink lots so the dye gets circulated through your body)
We got back to the hospital and I was taken right into the scan room. She got me up and comfy on the bed and we discussed that I had EDS and what areas I am having problems with (ugh, everything!!!) and which injuries I have had (dislocations / sprains etc). I had been concerned as I figured my GP would have ordered just the normal scan where my old rheumy would always ask specifically for hand and wrist scans as well. I had nothing to be concerned about! All in all she did seven separate scans. 1) Full Body; 2) Ankles; 3) Feet; 4) Neck & Head - right view; 5) Neck & Head - left view; 6) Left Elbow & Wrist; 7) Right Elbow & Wrist.
We were all done and out of the hospital a little over an hour later with the 'warning' that I was not allowed to leave the country for 72 hours lol (That part always freaks me out a bit, but also is quite funny). I was quite achey for a few days afterwards but that could have been from the dye, the increased pain from lying still so long or a combination of the two but keeping on top of things definitely over ranks a few achey days!
* There are two types of bone scans, ones that just take pictures a few hours later or the three phase one that I had. According to Wikipedia the three phase test is for:
"If the physician wants to evaluate for osteomyelitis (bone infection) or fractures, then a Three Phase/Triphasic Bone Scan is performed where 20-30 minutes of images (1st and 2nd Phases) are taken during the initial injection. The patient then returns in 2-3 hours for additional images (3rd Phase)."
We did our normal thing, went out and got some breakfast at McD's (I love their hash browns and their egg McMuffins remind me of my times at university. I only get this 'meal' if I have early morning doctor's appointments / tests). We did some shopping and just killing time, all the while I had a bottle of water with me and I had to have drank at least 1.5 liters before going back to the hospital! (They want you to drink lots so the dye gets circulated through your body)
We got back to the hospital and I was taken right into the scan room. She got me up and comfy on the bed and we discussed that I had EDS and what areas I am having problems with (ugh, everything!!!) and which injuries I have had (dislocations / sprains etc). I had been concerned as I figured my GP would have ordered just the normal scan where my old rheumy would always ask specifically for hand and wrist scans as well. I had nothing to be concerned about! All in all she did seven separate scans. 1) Full Body; 2) Ankles; 3) Feet; 4) Neck & Head - right view; 5) Neck & Head - left view; 6) Left Elbow & Wrist; 7) Right Elbow & Wrist.
We were all done and out of the hospital a little over an hour later with the 'warning' that I was not allowed to leave the country for 72 hours lol (That part always freaks me out a bit, but also is quite funny). I was quite achey for a few days afterwards but that could have been from the dye, the increased pain from lying still so long or a combination of the two but keeping on top of things definitely over ranks a few achey days!
* There are two types of bone scans, ones that just take pictures a few hours later or the three phase one that I had. According to Wikipedia the three phase test is for:
"If the physician wants to evaluate for osteomyelitis (bone infection) or fractures, then a Three Phase/Triphasic Bone Scan is performed where 20-30 minutes of images (1st and 2nd Phases) are taken during the initial injection. The patient then returns in 2-3 hours for additional images (3rd Phase)."
Thursday, February 21, 2013
GP Appointment - January 31st
This will be brief (for once!) I promise :) I went to see my GP and had a short list of things to go over and we managed to get them all covered with no real frustrations or upsets. The easy part was just getting my pain medications refilled for the next three months. He still doesn't want to switch me to breakthrough med #2 as he thinks it's a "dirty" drug. No mention that I had been on it for like 5 years and have never had an issue for it. At the last appointment he was confused as he asked me who prescribed it to me last and I told him that he was the last. He is fine switching between slow-release #1 and #2 but only wants me to be on breakthrough #1. Back then he told me that I could increase my dose as I was only taking one or two doses a day (which generally means it's time to change things up) but that I could take four to six doses a day (yet only gave me 100 pills for three months). Anyways that will be the challenge for the next appointment.
A few days before the appointment I had a scary incident where it felt like my head was going to explode it felt so full of pressure. I have had this before but this night I was getting slight blackouts on the edge of my vision, my eyes actually hurt and my ears kept throbbing. I heard there was a medication that would help with headaches and help with the pressure feelings. So I asked my doctor about it but he read it interacted with one of my other medications (which could be stopped if I had to) and read that it was a migraine medication. Out of nowhere he comes out with "these won't help you, you don't have migraines you have pressure build up headaches". My jaw just about dropped!! We spent years trying to figure out the headaches and it was only a few years ago that my internist confirmed that they were because of the neck issues. So I have my doctor saying that my headaches are from pressure build up in my brain!! It's so funny how when you drop trying to get someone to understand what is going on, is when they come out with it all on their own. So anyways, he agrees to try something else for headaches and actually wants to put me on a different AD as it is supposed to have less side effects. I am mainly wanting to get rid of, or at least decrease, the dry mouth issues as I hate having dental work every year (and already know I will have to go in again which is a horribly defeating feeling). He doesn't want to change the meds though until the weather stabilizes. This is twofold a) depression is bad this time of year and he wants things to be less depressing weather (if that makes sense) and b) with the big changes in weather that will affect the headaches as well so it's not the opportune time to work on headache meds. I am totally fine with this as long as he is willing to put this in action when the times comes.
Lastly I asked him about getting a new bone scan done. He turned and looked intrigued and asked why. I told him how my old rheumy liked to get one done every two to three years to keep on top of everything and to see if there are any changes in the bones or joints that are occurring that we could use for preventative instead of dealing with them when they become a problem. Surprisingly he also thought it sounded like a good idea and had the receptionist get one set up. And that was the entire appointment. I know it doesn't seem like much but to get all those issues addressed in one visit was very productive.
A few days before the appointment I had a scary incident where it felt like my head was going to explode it felt so full of pressure. I have had this before but this night I was getting slight blackouts on the edge of my vision, my eyes actually hurt and my ears kept throbbing. I heard there was a medication that would help with headaches and help with the pressure feelings. So I asked my doctor about it but he read it interacted with one of my other medications (which could be stopped if I had to) and read that it was a migraine medication. Out of nowhere he comes out with "these won't help you, you don't have migraines you have pressure build up headaches". My jaw just about dropped!! We spent years trying to figure out the headaches and it was only a few years ago that my internist confirmed that they were because of the neck issues. So I have my doctor saying that my headaches are from pressure build up in my brain!! It's so funny how when you drop trying to get someone to understand what is going on, is when they come out with it all on their own. So anyways, he agrees to try something else for headaches and actually wants to put me on a different AD as it is supposed to have less side effects. I am mainly wanting to get rid of, or at least decrease, the dry mouth issues as I hate having dental work every year (and already know I will have to go in again which is a horribly defeating feeling). He doesn't want to change the meds though until the weather stabilizes. This is twofold a) depression is bad this time of year and he wants things to be less depressing weather (if that makes sense) and b) with the big changes in weather that will affect the headaches as well so it's not the opportune time to work on headache meds. I am totally fine with this as long as he is willing to put this in action when the times comes.
Lastly I asked him about getting a new bone scan done. He turned and looked intrigued and asked why. I told him how my old rheumy liked to get one done every two to three years to keep on top of everything and to see if there are any changes in the bones or joints that are occurring that we could use for preventative instead of dealing with them when they become a problem. Surprisingly he also thought it sounded like a good idea and had the receptionist get one set up. And that was the entire appointment. I know it doesn't seem like much but to get all those issues addressed in one visit was very productive.
Saturday, December 1, 2012
BIG Update! - Part "Me"
Okay, once again it has taken me a long time to do an update and there is so much to update you all on so I will break it down into three posts - update on me, update on my mom and general update on situations going on. So this is the first one and it will be about little ol' me :)
So a few weeks ago I suddenly got a major toothache along all the teeth in my left top jaw and my cheek was all swollen and so as my eye. I went straight to the doctor and he barely even touched my cheek and said I had a massive sinus infection and didn't even check my ears or throat, just wrote up for an antibiotic. I have had this one before and hated it but it left a terrible taste in my mouth. This time around strangely the bad taste only lasted a few hours yet I had an actual appettite! I was eating two full meals a day and as eating almost normal portion sizes. It did cause some GI upset but once I started eating yogurt with it it settled down. Going to definitly have to talk to my GI/internist/cardio about it next time I see her to see if this could help things in any way at all.
I had a planned doctor's appointment last week mainly to change over my pain meds. He had no problem switching my long acting meds but was absolute in his refusal to change my breakthrough meds. He says the one that I switch to is 'dirty' and that it's not used anymore and that he won't perscribe it. I told him that he wrote for it last year and the fact that I had been on this med for like seven years. He then said that there was no reason that I needed to change it because he was changing my long-acting. I told him that I was getting tolerant and because of the switching medications I hadn't had to change my dosage in years. He asked how many breakthrough I was taking and I told him that lately I had been taking at least one, a lot of the times two a day. He dismissed this and told me that I could take it at least three to four times a day. I told him that my rheumy always told me that if I as relying on my breakthrough on a daily basis then it was time to either switch or increse my long-acting meds. He told me that he would rather me take more of the breakthrough I am on instead of switching to the other breakthrough medication. I still wasn't feeling all that well (even though I did get down-graded to just a cold and that the infection was gone) so I just basically gave up. The next appointment should be interesting as this could become quite the battle.
Mom was very mad that he told me to just take 3 or 4 breakthrough meds instead of switching over to the other medication as we have been working this system very successfully for 5+ years and my GP had been going along with the plan my old rheumy set up - until this appointment. Still not sure what we are going to be doing as I am still needing at least one breakthrough dose a day, which for just changing my long-acting is more than I normally would be needing.
On another note - this cold is killing my joints! My hands are very stiff (I think part of this is an auto-immune flare up that my doctor just doesn't want to put time into figuring it out) and my knees and all the other joints are really achey and (strange word but all I can think of) arthritisy. I have also been having some strange 'changes' in my GI system that I have no clue what is going on. But until it becomes a problem, we have more important things to deal with.
So a few weeks ago I suddenly got a major toothache along all the teeth in my left top jaw and my cheek was all swollen and so as my eye. I went straight to the doctor and he barely even touched my cheek and said I had a massive sinus infection and didn't even check my ears or throat, just wrote up for an antibiotic. I have had this one before and hated it but it left a terrible taste in my mouth. This time around strangely the bad taste only lasted a few hours yet I had an actual appettite! I was eating two full meals a day and as eating almost normal portion sizes. It did cause some GI upset but once I started eating yogurt with it it settled down. Going to definitly have to talk to my GI/internist/cardio about it next time I see her to see if this could help things in any way at all.
I had a planned doctor's appointment last week mainly to change over my pain meds. He had no problem switching my long acting meds but was absolute in his refusal to change my breakthrough meds. He says the one that I switch to is 'dirty' and that it's not used anymore and that he won't perscribe it. I told him that he wrote for it last year and the fact that I had been on this med for like seven years. He then said that there was no reason that I needed to change it because he was changing my long-acting. I told him that I was getting tolerant and because of the switching medications I hadn't had to change my dosage in years. He asked how many breakthrough I was taking and I told him that lately I had been taking at least one, a lot of the times two a day. He dismissed this and told me that I could take it at least three to four times a day. I told him that my rheumy always told me that if I as relying on my breakthrough on a daily basis then it was time to either switch or increse my long-acting meds. He told me that he would rather me take more of the breakthrough I am on instead of switching to the other breakthrough medication. I still wasn't feeling all that well (even though I did get down-graded to just a cold and that the infection was gone) so I just basically gave up. The next appointment should be interesting as this could become quite the battle.
Mom was very mad that he told me to just take 3 or 4 breakthrough meds instead of switching over to the other medication as we have been working this system very successfully for 5+ years and my GP had been going along with the plan my old rheumy set up - until this appointment. Still not sure what we are going to be doing as I am still needing at least one breakthrough dose a day, which for just changing my long-acting is more than I normally would be needing.
On another note - this cold is killing my joints! My hands are very stiff (I think part of this is an auto-immune flare up that my doctor just doesn't want to put time into figuring it out) and my knees and all the other joints are really achey and (strange word but all I can think of) arthritisy. I have also been having some strange 'changes' in my GI system that I have no clue what is going on. But until it becomes a problem, we have more important things to deal with.
Tuesday, October 23, 2012
Update
1) Holding a baby is a strenuous activity
2) Someone is finally AWOL
3) Preparing for flu season
4) Finally getting somewhere with doctors
5) A light is dawning
The first one is obvious I should think. I held my friends baby for about 30 minutes on Sunday afternoon with not much support for me and then again for a good 2 hours Sunday night and woke up with a shoulder and upper arm so sore you would have thought I had been in a prized fight. I was even surprised when I didn't see bruises. How can something so small (under 7lbs) cause any pain. However, there is no way that I will ever not hold him because I am worried about pain the next day. Just not going to happen!!
Second is actually welcomed news. My mom finally admitted over Thanksgiving weekend that my brother has gone missing. They have heard nothing since the early early hours on October 5th, he is not updating his facebook page and his cell phone has been disconnected. Just what my mom needs during this time she is supposed to be using for healing in the run up to more surgery. So we are back to the whole keeping doors locked and not answering any phone calls from unknown numbers.
My mom, K and myself all went over to the doctor's office yesterday to get our flu shots. I know this can be a controversial topic but we choose to get ours. Last year I didn't get one (as I was sick) and I was sick from mid-October through February. I am not doing that again!! It was easy getting K to get one this year, I just told him he couldn't see the baby if he didn't get his flu shot! He got his shot then looked at me and said "That was it? It didn't hurt!". We are still waiting on dad to get his but keep telling him with mom's upcoming hospital excursions, her need to heal and my crappy immune system he has to get one!
Fourth on the list is one that is pretty frustrating. As you all know from my LONG post the other day about my mom, we have been in limbo for a while. Dad decided on Monday that since it had been three weeks since the 'surgery' that he was going to call around and see what was going on. He called mom's ob/gyn (Dr. P)'s office to see just what was going on and they hadn't heard anything but told him that they would make a few calls and find out what was going on. They called back shortly and told dad that they were glad that dad called because when they called 'big city' they were told that mom's appointment was actually last week!!!!! They had an appointment set up for her on October 18th that we never knew about and they never even questioned why someone in our situation wouldn't show up for an appointment. Well dad was pissed!!! I wouldn't have wanted to be on the other end of the phone. So he called the general surgeons (Dr. B) office and just let go saying that they could be there in an hour and 15 minutes and that they would come at any time. They told dad that Dr. B operates on every other Thursday and sees patients the other Thursday's (not sure what she does every other day of the week :S ) so they 'squeezed' mom in on November 1st at 8:45 in the morning!! Which leads me to think that the doctor is coming in early to get mom's appointment. Now remember, we live over an hour away so this makes it an insanely early time to get on the road for the appointment. I honestly would suggest that mom and dad went up the night before and got a hotel but I don't think mom would go for that. Now, here is the tricky part. Thankfully mom was sound asleep through all of dad's phone calls and just woke up to find out that she has an appointment on November 1st. Dad doesn't want to put anymore stress on her so we are not going to tell her about the 'missed' appointment. Not sure how that will work out when she gets to the appointment so we will just see what happens. Now this is only a consultation visit but we are hoping that we get a lot more information and dates from this.
Lastly, something I have been trying to avoid I think. I am starting to realize just how messed up my GI system is getting. I have all the 'normal' EDS and gastro lower GI issues (constipation, bloating, bleeding, cramping etc) but always just chalked that up to the pain medications that I am on and never thought anything of it. A few weeks ago we found out that the stool softeners I have to take are not supposed to be taken within two hours of other medications! I always took them with my normal night time medications. So mom and I figured that maybe we should try stopping that to see if my night meds might just have been affected and messing with my sleep. I went out and bought some Miralax and switched to that for a week. I have never had the stomach cramps that I have had this week, and lots more issues with constipation so I will definitely be switching back to the pills as I haven't even noticed a difference with the other meds. But at least I tried and saw what happened. Now as to upper GI issues, I have noticed them getting a lot worse, especially after the scope I had last January. I have finally got the real bad reflux under control with changing my actonel drug dosage thankfully but have lately been noticing other issues. I have had a lot of problems with eating and having it feel like it is just sitting in my stomach. I am not talking about feeling full a few hours after supper, I am talking not wanting to eat for a few days because I was still full from a meal I had a few days ago. Also have found that I have to be careful when feeding the dogs and actually sit on the floor to feed them instead of bending and reaching down as if I do this (like touching your toes) the food literally comes back up and I have been quite close to throwing up. I have to watch more which foods I eat as well as to figure out which cause me problems and stuff like that. I have also been under a lot more stress with mom's problems but also quite run down as I have had to be more active this last month filling in for mom and stuff like that. Once things settled down, this will be an issue that needs to be looked into for sure.
2) Someone is finally AWOL
3) Preparing for flu season
4) Finally getting somewhere with doctors
5) A light is dawning
The first one is obvious I should think. I held my friends baby for about 30 minutes on Sunday afternoon with not much support for me and then again for a good 2 hours Sunday night and woke up with a shoulder and upper arm so sore you would have thought I had been in a prized fight. I was even surprised when I didn't see bruises. How can something so small (under 7lbs) cause any pain. However, there is no way that I will ever not hold him because I am worried about pain the next day. Just not going to happen!!
Second is actually welcomed news. My mom finally admitted over Thanksgiving weekend that my brother has gone missing. They have heard nothing since the early early hours on October 5th, he is not updating his facebook page and his cell phone has been disconnected. Just what my mom needs during this time she is supposed to be using for healing in the run up to more surgery. So we are back to the whole keeping doors locked and not answering any phone calls from unknown numbers.
My mom, K and myself all went over to the doctor's office yesterday to get our flu shots. I know this can be a controversial topic but we choose to get ours. Last year I didn't get one (as I was sick) and I was sick from mid-October through February. I am not doing that again!! It was easy getting K to get one this year, I just told him he couldn't see the baby if he didn't get his flu shot! He got his shot then looked at me and said "That was it? It didn't hurt!". We are still waiting on dad to get his but keep telling him with mom's upcoming hospital excursions, her need to heal and my crappy immune system he has to get one!
Fourth on the list is one that is pretty frustrating. As you all know from my LONG post the other day about my mom, we have been in limbo for a while. Dad decided on Monday that since it had been three weeks since the 'surgery' that he was going to call around and see what was going on. He called mom's ob/gyn (Dr. P)'s office to see just what was going on and they hadn't heard anything but told him that they would make a few calls and find out what was going on. They called back shortly and told dad that they were glad that dad called because when they called 'big city' they were told that mom's appointment was actually last week!!!!! They had an appointment set up for her on October 18th that we never knew about and they never even questioned why someone in our situation wouldn't show up for an appointment. Well dad was pissed!!! I wouldn't have wanted to be on the other end of the phone. So he called the general surgeons (Dr. B) office and just let go saying that they could be there in an hour and 15 minutes and that they would come at any time. They told dad that Dr. B operates on every other Thursday and sees patients the other Thursday's (not sure what she does every other day of the week :S ) so they 'squeezed' mom in on November 1st at 8:45 in the morning!! Which leads me to think that the doctor is coming in early to get mom's appointment. Now remember, we live over an hour away so this makes it an insanely early time to get on the road for the appointment. I honestly would suggest that mom and dad went up the night before and got a hotel but I don't think mom would go for that. Now, here is the tricky part. Thankfully mom was sound asleep through all of dad's phone calls and just woke up to find out that she has an appointment on November 1st. Dad doesn't want to put anymore stress on her so we are not going to tell her about the 'missed' appointment. Not sure how that will work out when she gets to the appointment so we will just see what happens. Now this is only a consultation visit but we are hoping that we get a lot more information and dates from this.
Lastly, something I have been trying to avoid I think. I am starting to realize just how messed up my GI system is getting. I have all the 'normal' EDS and gastro lower GI issues (constipation, bloating, bleeding, cramping etc) but always just chalked that up to the pain medications that I am on and never thought anything of it. A few weeks ago we found out that the stool softeners I have to take are not supposed to be taken within two hours of other medications! I always took them with my normal night time medications. So mom and I figured that maybe we should try stopping that to see if my night meds might just have been affected and messing with my sleep. I went out and bought some Miralax and switched to that for a week. I have never had the stomach cramps that I have had this week, and lots more issues with constipation so I will definitely be switching back to the pills as I haven't even noticed a difference with the other meds. But at least I tried and saw what happened. Now as to upper GI issues, I have noticed them getting a lot worse, especially after the scope I had last January. I have finally got the real bad reflux under control with changing my actonel drug dosage thankfully but have lately been noticing other issues. I have had a lot of problems with eating and having it feel like it is just sitting in my stomach. I am not talking about feeling full a few hours after supper, I am talking not wanting to eat for a few days because I was still full from a meal I had a few days ago. Also have found that I have to be careful when feeding the dogs and actually sit on the floor to feed them instead of bending and reaching down as if I do this (like touching your toes) the food literally comes back up and I have been quite close to throwing up. I have to watch more which foods I eat as well as to figure out which cause me problems and stuff like that. I have also been under a lot more stress with mom's problems but also quite run down as I have had to be more active this last month filling in for mom and stuff like that. Once things settled down, this will be an issue that needs to be looked into for sure.
Monday, October 15, 2012
Worst Day Of My Life...
... and I am not being overly dramatic here! I haven't posted yet about this as it was quite a few rough weeks around here medical wise - and it wasn't me! I will start from the beginning and apologize in advance as this will most likely be long as it was a very very long day.
My mom has been having 'female problems' for quite a while now and after two D&C's within the last few years she wanted to finally get it all over with, by the way she does not have EDS. The doctor she usually saw classified her as a new patient so she was facing a six month wait before she could get in to see him again. So the receptionist at our GP's office asked if she wanted her to try a different doctor and actually referred mom to her personal ob/gyn and mom was able to go in and see him mid-September. Mom went to the appointment and Dr. P suggested a more 'sophisticated' D&C done in 'big-town' an hour away but mom instead asked if she couldn't just 'get it over with' and have a full hysterectomy. Dr. P smiled and said that he hoped mom would ask for one. Then he asked how soon mom wanted to get it done and she said any time so he went to check his calendar and had a date for her... October 1st - only two weeks away which she took and was glad to be getting it over with well before Christmas. She was told that she would be in the hospital for 3 nights before being allowed to go home and would be on 'lifting restrictions' for 6 - 8 weeks.
So on September 30th, mom packed her bag for the week and I packed up all I needed for a day at the hospital. When I have surgery it is generally mom that comes with me and when mom has surgery it's generally me going, dad hates the hospital so tries to avoid it at all costs and is really not good with sitting around and waiting. October 1st we woke up really early and headed to the hospital. We do the normal stuff and are taken to the same area I went when I had my scope (that bad horrible scope!!! uh-oh bad feeling #1) before she is taken up to the pre-op area and they let me go up with her. I meet Dr. P at that time and was glad to see that her anesthesiologist was actually the one that I had a consult with before my last surgery who was really really nice! I have no clue about any times for this day. I know her surgery was supposed to be around 9:30ish and that she got to go back slightly early. So I grabbed her stuff and my stuff and headed down to Tim Hortons to get a bagel and an iced cap as I hadn't eaten anything yet. I then headed up to the waiting area for the in-patient surgery ward. I had my breakfast and took out my book to read, knowing that I would be there for awhile before hearing anything.
I honestly don't remember what time it was but Dr. P entered the room and told me to sit down because we had to talk (uh-oh bad feeling #2). He was very calm and collected and even though I knew it was serious, he put me instantly at ease just with his presence. He told me that they did not do the surgery. He said that he was glad that he was the one to do the surgery because when he does a hysterectomy he likes to look around the entire abdominal cavity whereas most ob/gyn's don't do this. He tells me that they found what is called an abdominal aortic aneurysm and once he saw that he didn't want to proceed. He told me that generally if an aneurysm is less than 5cm they aren't too concerned about it. Then he tells me that my mom's is 12cm in size. I went kind of numb at that point but he kept on saying that they were waiting for transport as they needed to take her to 'big city' urgently. Dr. P says they are having slight difficulties with the paperwork as they have never had to send a patient from post-op straight to 'big city' by ambulance before (it is usually done out of ICU). He also said something along the lines that there were no decisions that I had to make (thankfully!! I was her emergency contact for the day because I was with her) and he was calling the shots. He asked if I had any questions and all I said was I wanted to go and see her. He told me that this was generally not allowed but he would talk to the nurse about it. I quickly went on the Internet there to look up symptoms to see if there was anything that might be able to help. I called my dad and told him what was going on and said that I would leave keep him up to date. He told me that we would change places once she was off so I would be home with K and he would head to 'big city' with mom.
A nurse came to get me and told me that technically I was not allowed in the post-op area but that they were making an exception so mom could see me before she was shipped out (uh-oh bad feeling #3). I get to the area and not only does mom still have her IV and catheter in but she is also now hooked up to oxygen, ekg, pulse ox and two or three additional IV's (one of which was designated for blood transfusions). I remember a calm peaceful feel to the area as the nurses were all scrambling (uh-oh bad feeling #4) and at one point her pulse-ox fell off her toe and the machines started beeping but without even thinking I just put it back on her and the alarm stopped. The one thing she asked of me was to call my aunt and NOT call my grandma at all!
The ambulance was just arriving so I really didn't even get to talk to mom before hand (she was obviously quite groggy and confused). I was not impressed with the ambulance man (AM) but the ambulance woman (AW) was really nice. I asked immediately that I wanted to go with her in the ambulance and AM said 'no', AW then explained that they had to take a nurse with her so there would be no room for me. At this point I am just searching my brain as to what to say / ask. I told them that she had back pain for a long time that was termed as arthritis (learned this could be a symptom) and that made them even more put a bit more hurry in their step. I then asked if they needed her medications - AM 'no', AW no we don't need them we have all that information on her forms and that 'big city' would handle her medications in hospital. I asked if they wanted my dad's cell phone and explained that we were 'switching off' and once again AM says 'no' and AW tells me that they have me listed as a contact person and made sure that if I was called I could get any information to my dad (which I could) as they don't like having more than one phone number attached to each patient. As they are strapping her all up, all I kept saying was that she was claustrophobic. I needed to make sure that they knew that as I did not want mom having a panic attack in the ambulance on the way there. AM didn't even acknowledge me where AW told me thank you for the information, made a mark on the clipboard and smiled at me. I then asked where they were going and both AM, AW and a few other nurses all told me the same hospital (old children's hospital) so I knew where to send my dad. They took her off and I was left with just a nurse and got out in to the hallway and was trying so hard to cry but when the nurse gave me a hug I broke down. She just kept repeating what all the other doctor's and nurses I had seen had said - "This is a good thing!". In my mind I knew it was but was still in shock about it all. The nurse then told me that it was good as they could do non-emergent surgery and get it out before anything bad happened and that Dr. P did the right thing. She walked me to the end of her unit, turned me around to look at me and asked if I was okay or did I want her to call me a cab. I said I was fine and needed to get home so dad could leave. She said to tell dad not to hurry (really?!?!?) as he might not even get to see her between tests until after surgery.
I called home and told dad that I was on my way home and that he could leave then (I had already told him where she was going and that he should pack an overnight bag for a few days just in case). He said that he would wait until I got home and I was really mad about that. I thought he should have left the minute I told him they were sending her to 'big city' but apparently he told mom that in his heart he had to see that I was okay before he left me here alone (K was at school). We did a quick switch off and he tells me that he has called my nan already and a few other people that I was to keep informed as to what was going on.
Then I sank on the couch. From coming from such chaos and emotions and all of a sudden it was very overly quiet. I knew that I should go lie down for an hour or so before K got home from school as I had told dad that he was to stay in 'big city' as long as mom was there and to not worry about me or K, that I had everything covered. But that just wasn't an option with how fast my brain was running. I called my Aunt (mom's side) and told her what I knew, what was going on and that I was basically leaving it up to her to relate the news to nan and my cousins, which she was fine with I might add. I then called our neighbours (we have lived beside them for 23 years) and they said to keep them informed and that they were there day and night if I needed anything. I will say though that I was disappointed with one person. The only real friend I have around her, when I texted her and asked if she was free she said she was just heading out of town to go shopping with her mom and then asked if everything was okay and I said no. I would have liked her to just cancel her trip but I know it wasn't that easy. Then our good family friend (that came to talk to mom and I when the problems with my brother were going on from a few posts ago) was out of town on her honeymoon and I could only get her answering machine on her cell so had no option than to just leave a message (she felt horrible after!) Anyways, I didn't want to be making a pile of phone calls so I decided that since most of dad's family was on facebook, I would just do updates on there. Ironically at that time it all worked out. My one set of aunt and uncle don't have facebook but their daughters do and the one was online at that time and called her parents. My next set go on sporadically but her best friend was on so she called my aunt, same situation with my last set. I felt horrible but I realized the next day that I did have another set of aunt and uncle not connected to facebook but found out another aunt had kept her up to date.
I ended up having one run in with a cousin (mom's side) when she posted on one of my facebook updates that 'someone' really needed to call my nan and let her know what was going on. I was mad about that as my aunt on that side was the one person who I was telling everything to as soon as I heard anything. I literally would hang up the phone with dad and call her. I politely (I hope) basically said that since I was home alone with K I didn't want to be making endless phone calls and end up upsetting him. I had told him when he got home that nanny had to have a different surgery by a new doctor in 'big city' but that was it. I heard from dad late afternoon that they had taken her up for a CT scan and that they no longer thought it was an aneurysm but that they weren't sure what it was. The vascular surgeon had been in and signed off on her so they were waiting for a new doctor to come and look her over. At this point I was just all over the place so I just ordered pizza for supper. When we got back the neighbour across the street was home so I went over to tell her what was going on and she said that she would leave her phone by her bed and for me to call her at anytime for anything. Our other long-time neighbour echoed that.
I just went to start eating and I get a phone call from another family friend. This family lived behind us for years and they watched my grow up and mom and dad watched their kids grow up. They moved but dad is still good friends with them. Ironically, she had been the OR nurse in the OR with mom which was strangely comforting that mom had someone there to hold her hand when she went under. She wanted to know what was going on! Apparently they originally thought it was a mass on her kidney so they called in a urologist but then she had to leave (not sure why) and when she got 'back' she found out they had sent mom to 'big city' with an aneurysm and had debated on calling or not. I gave her the updates and she was relieved to hear it was not an aneurysm and that it was getting dealt with. I told her I would keep her updated and call when I heard more and she had the nicest answer 'If you have time that's okay but don't worry about keeping my updated as I am sure you have your hands more than full talking to enough people'. Someone understood.
Around 7ish I found out that it was a large cyst but they didn't know where it was attached but suspected the intestines and that they had met with the general surgeon and even though they needed to get it out, it wasn't an emergency and could be scheduled for another time. He assured dad that it wouldn't be horribly long wait (we have dealt with 'big city' and surgery before). At that point dad wasn't sure if they were sending mom home for the night, if they were staying there or what was going on so I assumed that he would be there over night and I was in charge of K for the night. A few more calls and updates later and around 10 dad calls again saying they are shipping her home for the night so he is driving back, making sure she gets settled into her room and then will be home. I figured since K was kinda out of sorts and I was exhausted I wasn't even going to bother trying to get him to sleep in his own bed (an ongoing battle) and just had us both curl up in mom's bed and tried to go to sleep. But he knew dad was coming home, and I didn't want to sleep until dad got home, so we were up until 11:30ish that night. I had set my alarm for the morning but dad got up with him and off to school.
So that was Monday, October 1st, 2012. It's a day I will never forget! There is still more to tell but this is already novel length so I will post more tomorrow (or in a few days) about what has happened since.
Want to know the strangest thing? As soon as Dr. P. said it was an abdominal aortic aneurysm my very first thought was...... "But she doesn't have EDS".
My mom has been having 'female problems' for quite a while now and after two D&C's within the last few years she wanted to finally get it all over with, by the way she does not have EDS. The doctor she usually saw classified her as a new patient so she was facing a six month wait before she could get in to see him again. So the receptionist at our GP's office asked if she wanted her to try a different doctor and actually referred mom to her personal ob/gyn and mom was able to go in and see him mid-September. Mom went to the appointment and Dr. P suggested a more 'sophisticated' D&C done in 'big-town' an hour away but mom instead asked if she couldn't just 'get it over with' and have a full hysterectomy. Dr. P smiled and said that he hoped mom would ask for one. Then he asked how soon mom wanted to get it done and she said any time so he went to check his calendar and had a date for her... October 1st - only two weeks away which she took and was glad to be getting it over with well before Christmas. She was told that she would be in the hospital for 3 nights before being allowed to go home and would be on 'lifting restrictions' for 6 - 8 weeks.
So on September 30th, mom packed her bag for the week and I packed up all I needed for a day at the hospital. When I have surgery it is generally mom that comes with me and when mom has surgery it's generally me going, dad hates the hospital so tries to avoid it at all costs and is really not good with sitting around and waiting. October 1st we woke up really early and headed to the hospital. We do the normal stuff and are taken to the same area I went when I had my scope (that bad horrible scope!!! uh-oh bad feeling #1) before she is taken up to the pre-op area and they let me go up with her. I meet Dr. P at that time and was glad to see that her anesthesiologist was actually the one that I had a consult with before my last surgery who was really really nice! I have no clue about any times for this day. I know her surgery was supposed to be around 9:30ish and that she got to go back slightly early. So I grabbed her stuff and my stuff and headed down to Tim Hortons to get a bagel and an iced cap as I hadn't eaten anything yet. I then headed up to the waiting area for the in-patient surgery ward. I had my breakfast and took out my book to read, knowing that I would be there for awhile before hearing anything.
I honestly don't remember what time it was but Dr. P entered the room and told me to sit down because we had to talk (uh-oh bad feeling #2). He was very calm and collected and even though I knew it was serious, he put me instantly at ease just with his presence. He told me that they did not do the surgery. He said that he was glad that he was the one to do the surgery because when he does a hysterectomy he likes to look around the entire abdominal cavity whereas most ob/gyn's don't do this. He tells me that they found what is called an abdominal aortic aneurysm and once he saw that he didn't want to proceed. He told me that generally if an aneurysm is less than 5cm they aren't too concerned about it. Then he tells me that my mom's is 12cm in size. I went kind of numb at that point but he kept on saying that they were waiting for transport as they needed to take her to 'big city' urgently. Dr. P says they are having slight difficulties with the paperwork as they have never had to send a patient from post-op straight to 'big city' by ambulance before (it is usually done out of ICU). He also said something along the lines that there were no decisions that I had to make (thankfully!! I was her emergency contact for the day because I was with her) and he was calling the shots. He asked if I had any questions and all I said was I wanted to go and see her. He told me that this was generally not allowed but he would talk to the nurse about it. I quickly went on the Internet there to look up symptoms to see if there was anything that might be able to help. I called my dad and told him what was going on and said that I would leave keep him up to date. He told me that we would change places once she was off so I would be home with K and he would head to 'big city' with mom.
A nurse came to get me and told me that technically I was not allowed in the post-op area but that they were making an exception so mom could see me before she was shipped out (uh-oh bad feeling #3). I get to the area and not only does mom still have her IV and catheter in but she is also now hooked up to oxygen, ekg, pulse ox and two or three additional IV's (one of which was designated for blood transfusions). I remember a calm peaceful feel to the area as the nurses were all scrambling (uh-oh bad feeling #4) and at one point her pulse-ox fell off her toe and the machines started beeping but without even thinking I just put it back on her and the alarm stopped. The one thing she asked of me was to call my aunt and NOT call my grandma at all!
The ambulance was just arriving so I really didn't even get to talk to mom before hand (she was obviously quite groggy and confused). I was not impressed with the ambulance man (AM) but the ambulance woman (AW) was really nice. I asked immediately that I wanted to go with her in the ambulance and AM said 'no', AW then explained that they had to take a nurse with her so there would be no room for me. At this point I am just searching my brain as to what to say / ask. I told them that she had back pain for a long time that was termed as arthritis (learned this could be a symptom) and that made them even more put a bit more hurry in their step. I then asked if they needed her medications - AM 'no', AW no we don't need them we have all that information on her forms and that 'big city' would handle her medications in hospital. I asked if they wanted my dad's cell phone and explained that we were 'switching off' and once again AM says 'no' and AW tells me that they have me listed as a contact person and made sure that if I was called I could get any information to my dad (which I could) as they don't like having more than one phone number attached to each patient. As they are strapping her all up, all I kept saying was that she was claustrophobic. I needed to make sure that they knew that as I did not want mom having a panic attack in the ambulance on the way there. AM didn't even acknowledge me where AW told me thank you for the information, made a mark on the clipboard and smiled at me. I then asked where they were going and both AM, AW and a few other nurses all told me the same hospital (old children's hospital) so I knew where to send my dad. They took her off and I was left with just a nurse and got out in to the hallway and was trying so hard to cry but when the nurse gave me a hug I broke down. She just kept repeating what all the other doctor's and nurses I had seen had said - "This is a good thing!". In my mind I knew it was but was still in shock about it all. The nurse then told me that it was good as they could do non-emergent surgery and get it out before anything bad happened and that Dr. P did the right thing. She walked me to the end of her unit, turned me around to look at me and asked if I was okay or did I want her to call me a cab. I said I was fine and needed to get home so dad could leave. She said to tell dad not to hurry (really?!?!?) as he might not even get to see her between tests until after surgery.
I called home and told dad that I was on my way home and that he could leave then (I had already told him where she was going and that he should pack an overnight bag for a few days just in case). He said that he would wait until I got home and I was really mad about that. I thought he should have left the minute I told him they were sending her to 'big city' but apparently he told mom that in his heart he had to see that I was okay before he left me here alone (K was at school). We did a quick switch off and he tells me that he has called my nan already and a few other people that I was to keep informed as to what was going on.
Then I sank on the couch. From coming from such chaos and emotions and all of a sudden it was very overly quiet. I knew that I should go lie down for an hour or so before K got home from school as I had told dad that he was to stay in 'big city' as long as mom was there and to not worry about me or K, that I had everything covered. But that just wasn't an option with how fast my brain was running. I called my Aunt (mom's side) and told her what I knew, what was going on and that I was basically leaving it up to her to relate the news to nan and my cousins, which she was fine with I might add. I then called our neighbours (we have lived beside them for 23 years) and they said to keep them informed and that they were there day and night if I needed anything. I will say though that I was disappointed with one person. The only real friend I have around her, when I texted her and asked if she was free she said she was just heading out of town to go shopping with her mom and then asked if everything was okay and I said no. I would have liked her to just cancel her trip but I know it wasn't that easy. Then our good family friend (that came to talk to mom and I when the problems with my brother were going on from a few posts ago) was out of town on her honeymoon and I could only get her answering machine on her cell so had no option than to just leave a message (she felt horrible after!) Anyways, I didn't want to be making a pile of phone calls so I decided that since most of dad's family was on facebook, I would just do updates on there. Ironically at that time it all worked out. My one set of aunt and uncle don't have facebook but their daughters do and the one was online at that time and called her parents. My next set go on sporadically but her best friend was on so she called my aunt, same situation with my last set. I felt horrible but I realized the next day that I did have another set of aunt and uncle not connected to facebook but found out another aunt had kept her up to date.
I ended up having one run in with a cousin (mom's side) when she posted on one of my facebook updates that 'someone' really needed to call my nan and let her know what was going on. I was mad about that as my aunt on that side was the one person who I was telling everything to as soon as I heard anything. I literally would hang up the phone with dad and call her. I politely (I hope) basically said that since I was home alone with K I didn't want to be making endless phone calls and end up upsetting him. I had told him when he got home that nanny had to have a different surgery by a new doctor in 'big city' but that was it. I heard from dad late afternoon that they had taken her up for a CT scan and that they no longer thought it was an aneurysm but that they weren't sure what it was. The vascular surgeon had been in and signed off on her so they were waiting for a new doctor to come and look her over. At this point I was just all over the place so I just ordered pizza for supper. When we got back the neighbour across the street was home so I went over to tell her what was going on and she said that she would leave her phone by her bed and for me to call her at anytime for anything. Our other long-time neighbour echoed that.
I just went to start eating and I get a phone call from another family friend. This family lived behind us for years and they watched my grow up and mom and dad watched their kids grow up. They moved but dad is still good friends with them. Ironically, she had been the OR nurse in the OR with mom which was strangely comforting that mom had someone there to hold her hand when she went under. She wanted to know what was going on! Apparently they originally thought it was a mass on her kidney so they called in a urologist but then she had to leave (not sure why) and when she got 'back' she found out they had sent mom to 'big city' with an aneurysm and had debated on calling or not. I gave her the updates and she was relieved to hear it was not an aneurysm and that it was getting dealt with. I told her I would keep her updated and call when I heard more and she had the nicest answer 'If you have time that's okay but don't worry about keeping my updated as I am sure you have your hands more than full talking to enough people'. Someone understood.
Around 7ish I found out that it was a large cyst but they didn't know where it was attached but suspected the intestines and that they had met with the general surgeon and even though they needed to get it out, it wasn't an emergency and could be scheduled for another time. He assured dad that it wouldn't be horribly long wait (we have dealt with 'big city' and surgery before). At that point dad wasn't sure if they were sending mom home for the night, if they were staying there or what was going on so I assumed that he would be there over night and I was in charge of K for the night. A few more calls and updates later and around 10 dad calls again saying they are shipping her home for the night so he is driving back, making sure she gets settled into her room and then will be home. I figured since K was kinda out of sorts and I was exhausted I wasn't even going to bother trying to get him to sleep in his own bed (an ongoing battle) and just had us both curl up in mom's bed and tried to go to sleep. But he knew dad was coming home, and I didn't want to sleep until dad got home, so we were up until 11:30ish that night. I had set my alarm for the morning but dad got up with him and off to school.
So that was Monday, October 1st, 2012. It's a day I will never forget! There is still more to tell but this is already novel length so I will post more tomorrow (or in a few days) about what has happened since.
Want to know the strangest thing? As soon as Dr. P. said it was an abdominal aortic aneurysm my very first thought was...... "But she doesn't have EDS".
Friday, June 29, 2012
GP Visit & Medication Frustration
This appointment went pretty well but was mostly unproductive which was annoying. When I had seen Dr. B before I had my dental work he seemed like there was a lot of things he wanted to go over and make some changes. As it turned out my mom had her own doctors appointment that morning (funny enough it was in the same building) so she could not go to the appointment with me.
After a wait I get called in to the nurses office for the pre-appointment. She weighs me (down a few pounds :D) and goes to get my blood pressure and surprised herself that she got it on the first try. She remarked that either she is getting better at hearing it or I am becoming normal. I told her it must be her! She gives me my depo shot and then asks what I am there for so she can make up her list.
I get in to Dr. B's office and he asks how the surgery went (fine) and how things were (also fine). He then looks up my bloodwork results and notes that my kidney's are perfectly fine and that my Vitamin D is still really really low but it is at least slowly getting better so that's all we can hope for. He told me to get out in the sun at least 20 minutes a day, even if I am in the shade it still counts. He then closes up his screen and starts making it look like the appointment is done! I then quickly get him back on track and remind him what he had wanted to do. He asked how my pain meds were doing and I said that they were still working but I was probably going to go through my breakthrough meds faster than normal because of the surgery, vacations and traveling. He asked how often I was using them and then confirmed my daily dose meds and then asked when I was due to switch them which will probably be in the fall. We basically both agreed that this is not the time to be changing meds around since I am 'stable' (seems to be a common word lately with doctors and me) and most importantly because I am going to be traveling. He wants to make sure that I will be home for a good few weeks when he changes the meds around just so that if there are any problems I am right here at home and he is right here to help out if anything happens. This is actually perfect as it shows he is taking things seriously and understanding that I have more 'special needs' than most of his other patients. I did get the name of the medication this time and will be doing my own research before going back to see him. He also needed some time to figure out how to work out what dosage I would need to start at, even said he might just phone the drug rep and get them to work it out for him.
We then discuss changing my osteoporosis meds from once a month to once a week. He said that they did not have anywhere near the restrictions food and time wise as the monthly ones which would be a very welcome change! To those who don't know, to take my pill I had to take it as soon as I woke up with a full glass of water, then I could not eat, drink, take other medications or lie down for around 30-60 minutes. This made things very difficult with my sleep schedule and the fact that I generally take my morning meds as soon as I wake up. It also had the very annoying side effect of bad heartburn (like I needed more) and a very 'achey' feeling that night or the next. Getting rid of all that just seemed perfect so he made me up a new prescription for it. I then asked him about a new DEXA scan and he checked when I had mine last (would be 2 years in September) but then said it wouldn't be covered as they can only do it every two years as a very minimum and did not like approving it so early, ideally they like to wait 3 - 5 years. He also told me that any changes with starting medication don't show up for a few years but that we would submit for a new scan in the fall (so we have gone two years) and see what happens. I had wondered about getting one to just confirm that the medication is helping but he reminded me that the medication I am on is the best one for me to be on.
At that everything was done so he told me to enjoy my summer and he would see me in the fall. I told him that I was having an MRI on the 9th so probably would be back to him sooner to get the results and he laughed and said he needed to set one up for his back too and was glad I had reminded him. So I walked out with a new prescription for an alternate osteoporosis medication, knowing the name of the new medication we are going to try in the fall and knowing that he knew I might have to refill my breakthrough meds early this summer because of all that is going on (and all the fun and enjoyment that is going on, I think he was just as happy to hear that honestly).
So, I normally took my monthly pill on the 27th as that is the easiest date for me to remember (I think I have wrote of the eerie 27 connection my family has before) and my appointment just happened to be on the 27th. I had no monthly pills left and figured I would just start my weekly ones that day. As it turned out I didn't get the actual pills until Thursday night. A temporary pharmacist was working when I went to get them and just told me that I was to take the pills with food and that I could start them at any time. I got home and had pull the box out of the bag and on the pharmacy's label it says to take with food. Yet on the package it says to take it first thing in the morning with a glass of water and no food, drink, medications or laying down for 30-60 minutes!! I was not impressed to say the least! I did not take the pill and decided that I would call the pharmacist the next day and figure this out (the pharmacy was closed at this point). I called the next day and again got a temporary fill in who told me that yes those were the directions, he did not know why they said to take with food on the label, that this prescription overwrote my monthly prescription and that since they had already billed my insurance I would just have to use these ones for the next three months and could change after that. Or I could pay out of pocket for the monthly one if my GP called in a script for it!!! It is an understatement that I was not impressed!! He then suggested calling the next day when the normal pharmacist was in.
I decided that since mom was going out to do some grocery shopping that I would just go with her and go to the pharmacy in person instead of calling. I got talking to the pharmacist and she said she had no clue how someone could put a label on the med saying take with food when it clearly is not allowed. She goes to tell me that the only thing different with the weekly medication was that I didn't necessarily have to take it as soon as I got up. There is basically a three hour window of not eating when you can take it. I can take it if I haven' t had anything to eat for two hours and won't be eating for another 30-60 minutes. She also wasn't impressed that the temp guy said I was basically stuck with it for three months because they actually have a 7 day window in which they can reverse any billing (mom and I still wonder though how they billed for the medication a day before I even picked up the medication???). I told her that if the pharmacist had of told me that I still had to follow the strict food rules that I would have never have taken the medication. I also figure that since he told me to take it with food, he was giving wrong information that lead to me accepting to take the medication and for me to take over the pills which would not have happened if he had told the truth. Thankfully my pharmacist knows me and the medications were blister packed. She suggested that with my history (gastroparesis and absorption issues) the weekly pill would be better for me and I would probably absorb more. I told her it was the side effects that concerned me because if I am going to get the side effects every week, then there is no reason why it should have been switched. We came to an agreement that she took back two months of the supply and only gave me one month. I am to try it for a month and see if I get the side effects and if I do then we can switch back to the monthly ones. It was all just such a mess and I am very upset at the temp pharmacist. I think I will only go in for my medications at times I know that my pharmacist (the two permanent ones) are there to deal with. I will also be contacting my doctors office and letting him know that there is no difference in the directions between the monthly and weekly forms of the medication.
After a wait I get called in to the nurses office for the pre-appointment. She weighs me (down a few pounds :D) and goes to get my blood pressure and surprised herself that she got it on the first try. She remarked that either she is getting better at hearing it or I am becoming normal. I told her it must be her! She gives me my depo shot and then asks what I am there for so she can make up her list.
I get in to Dr. B's office and he asks how the surgery went (fine) and how things were (also fine). He then looks up my bloodwork results and notes that my kidney's are perfectly fine and that my Vitamin D is still really really low but it is at least slowly getting better so that's all we can hope for. He told me to get out in the sun at least 20 minutes a day, even if I am in the shade it still counts. He then closes up his screen and starts making it look like the appointment is done! I then quickly get him back on track and remind him what he had wanted to do. He asked how my pain meds were doing and I said that they were still working but I was probably going to go through my breakthrough meds faster than normal because of the surgery, vacations and traveling. He asked how often I was using them and then confirmed my daily dose meds and then asked when I was due to switch them which will probably be in the fall. We basically both agreed that this is not the time to be changing meds around since I am 'stable' (seems to be a common word lately with doctors and me) and most importantly because I am going to be traveling. He wants to make sure that I will be home for a good few weeks when he changes the meds around just so that if there are any problems I am right here at home and he is right here to help out if anything happens. This is actually perfect as it shows he is taking things seriously and understanding that I have more 'special needs' than most of his other patients. I did get the name of the medication this time and will be doing my own research before going back to see him. He also needed some time to figure out how to work out what dosage I would need to start at, even said he might just phone the drug rep and get them to work it out for him.
We then discuss changing my osteoporosis meds from once a month to once a week. He said that they did not have anywhere near the restrictions food and time wise as the monthly ones which would be a very welcome change! To those who don't know, to take my pill I had to take it as soon as I woke up with a full glass of water, then I could not eat, drink, take other medications or lie down for around 30-60 minutes. This made things very difficult with my sleep schedule and the fact that I generally take my morning meds as soon as I wake up. It also had the very annoying side effect of bad heartburn (like I needed more) and a very 'achey' feeling that night or the next. Getting rid of all that just seemed perfect so he made me up a new prescription for it. I then asked him about a new DEXA scan and he checked when I had mine last (would be 2 years in September) but then said it wouldn't be covered as they can only do it every two years as a very minimum and did not like approving it so early, ideally they like to wait 3 - 5 years. He also told me that any changes with starting medication don't show up for a few years but that we would submit for a new scan in the fall (so we have gone two years) and see what happens. I had wondered about getting one to just confirm that the medication is helping but he reminded me that the medication I am on is the best one for me to be on.
At that everything was done so he told me to enjoy my summer and he would see me in the fall. I told him that I was having an MRI on the 9th so probably would be back to him sooner to get the results and he laughed and said he needed to set one up for his back too and was glad I had reminded him. So I walked out with a new prescription for an alternate osteoporosis medication, knowing the name of the new medication we are going to try in the fall and knowing that he knew I might have to refill my breakthrough meds early this summer because of all that is going on (and all the fun and enjoyment that is going on, I think he was just as happy to hear that honestly).
So, I normally took my monthly pill on the 27th as that is the easiest date for me to remember (I think I have wrote of the eerie 27 connection my family has before) and my appointment just happened to be on the 27th. I had no monthly pills left and figured I would just start my weekly ones that day. As it turned out I didn't get the actual pills until Thursday night. A temporary pharmacist was working when I went to get them and just told me that I was to take the pills with food and that I could start them at any time. I got home and had pull the box out of the bag and on the pharmacy's label it says to take with food. Yet on the package it says to take it first thing in the morning with a glass of water and no food, drink, medications or laying down for 30-60 minutes!! I was not impressed to say the least! I did not take the pill and decided that I would call the pharmacist the next day and figure this out (the pharmacy was closed at this point). I called the next day and again got a temporary fill in who told me that yes those were the directions, he did not know why they said to take with food on the label, that this prescription overwrote my monthly prescription and that since they had already billed my insurance I would just have to use these ones for the next three months and could change after that. Or I could pay out of pocket for the monthly one if my GP called in a script for it!!! It is an understatement that I was not impressed!! He then suggested calling the next day when the normal pharmacist was in.
I decided that since mom was going out to do some grocery shopping that I would just go with her and go to the pharmacy in person instead of calling. I got talking to the pharmacist and she said she had no clue how someone could put a label on the med saying take with food when it clearly is not allowed. She goes to tell me that the only thing different with the weekly medication was that I didn't necessarily have to take it as soon as I got up. There is basically a three hour window of not eating when you can take it. I can take it if I haven' t had anything to eat for two hours and won't be eating for another 30-60 minutes. She also wasn't impressed that the temp guy said I was basically stuck with it for three months because they actually have a 7 day window in which they can reverse any billing (mom and I still wonder though how they billed for the medication a day before I even picked up the medication???). I told her that if the pharmacist had of told me that I still had to follow the strict food rules that I would have never have taken the medication. I also figure that since he told me to take it with food, he was giving wrong information that lead to me accepting to take the medication and for me to take over the pills which would not have happened if he had told the truth. Thankfully my pharmacist knows me and the medications were blister packed. She suggested that with my history (gastroparesis and absorption issues) the weekly pill would be better for me and I would probably absorb more. I told her it was the side effects that concerned me because if I am going to get the side effects every week, then there is no reason why it should have been switched. We came to an agreement that she took back two months of the supply and only gave me one month. I am to try it for a month and see if I get the side effects and if I do then we can switch back to the monthly ones. It was all just such a mess and I am very upset at the temp pharmacist. I think I will only go in for my medications at times I know that my pharmacist (the two permanent ones) are there to deal with. I will also be contacting my doctors office and letting him know that there is no difference in the directions between the monthly and weekly forms of the medication.
Monday, June 18, 2012
Dental Surgery
[Note: Last week was amazingly hectic so I will be backdating a few posts so that it is posted on the actual date that whatever in the post occured]
Well as you know, I was quite nervous about going into this (minor) surgery because of what happened when I had the endoscope back in January. Because I am 'latex sensetive', I get booked into the special OR and get done first thing in the morning. One thing to point out is that I am NOT allergic to latex, but because of how I react to different adhesives and a few other issues that show a sensetivity to latex I have been told that I need to put down that I need to avoid latex because, especially with EDS, you never know when a sensetivity is going to turn into a full blown allergy - and with latex you need to be more aware than a lot of other allergens because of how and why you normally come into contact with latex (medical reasons mainly). Anyways, I had to be at the hospital at 6am as I was going to have surgery at 8am. I stayed awake up on the computer for a while, then went down to have a very quick shower and pack up my stuff for the day. I think it was around 1:30am that I acutally got to sleep and woke up around 5, so not too much sleep!
We get to the hospital and of course the staff at the check-in area does not come on until 6 so we had to sit and wait for a little bit. It really helps that there is a full Tim Hortons right next to the check-in area that were getting set up around this time so the scent of coffee was even more magnified to those of us who could not eat or drink. Got checked in at the first 'station' and then was sent up to the third floor to check into the surgical department. Then we sat and waited some more. Finally I was called back to get 'dressed', the lovely mesh underwear, hospital bottoms that don't do up and double gowned so your not flashing anyone lol. I then got mom and we went into the second pre-op area to wait for the nurse to go over everything. The nurse calls me back so mom and I head back and there are two nurses - one is a student nurse! All that was going through my mind was there was no way a student nurse was going to try for an IV! The student nurse goes over all my information in very fine detail and then the nurse said that she would get my IV started. I kinda got worried and said that they usually start my IV in the OR because I am a hard stick. She said that she bet she could get it and I was apprehensive about it but still said it was hard but okay. I quickly went to the bathroom first (when I get an IV in I do my best to not move at all!). During the time I was in the bathroom, mom went over with the nurses just how hard of stick I was. I get back and the student nurse kept going over my info and asked me when the last time I urinated was lol. We all just kinda looked at her like 'are you serious?' then I said 'uh, I just went'. Then they told me to get up on the bed.
The nurse looked at my veins in my arms (which I told her never work and that they have to use my hands), she then looked at my hands and went and got a warm blanket to put on my hands. She then was sure that she had a vein in my left hand so went for it. Of course, she didn't get it but even though I knew the instant that she put the vein in that it wasn't going to work, she didn't and spent a good amount of time digging around which was so painfull I was in tears when she was done. She finally pulled it out and goes 'You are a hard stick, guess I should have listened to you'. At that point my emotions and fear kicked in and I wouldn't even look at her or talk to her. Mom answered all the questions after that. Just as we were about to leave the nurse asks am I not allergic to latex and mom said that I am sensetive to it so she told me that I needed to take the little botties off and if I had my own socks I could put them on. Apparently the booties do have a small amount of latex in them (which made sense as to why my feet were so itchy!). At this point the nurse takes me on my bed and says mom can come as well and we head up to the last pre-op area. This is the first time that someone has been allowed to go this far with me. Usually there are no non-medical or non-surgical people allowed in this room, but this time most of the people waiting for surgery had someone else there with them.
I don't think the nurses in the pre-op room are used to patients coming up having already had a failed IV start as they weren't really sure if they should start it or what they were supposed to be doing. The anesthesiologist (we'll call her Dr. A as I can't remember her name and she was an anesthesiologist :) )came in and started asking me a lot of questions about my information and then mainly about why I was on a beta blocker. She got quite involved about what my normal resting rate is, did I feel it when it raced etc. She then started asking about the IV start - is it normally hard, was I stressed about it, was I anxious at the moment etc. She was very very nice, she then checked my hands (didn't even look at my arms which showed she trusted my knowledge) and asked the nurses in the pre-op to get me a warm blanket for me to put my hands in and to keep them in the blanket until I got to the OR. My dentist came in and talked to me, another nurse talked to me and after a short while (I heard one nurse say that I couldn't be nervous as I was just sitting there reading while all the doctors came and went lol) they told me it was time to go to the OR.
I got into the OR and all the doctors and nurses introduced themselves to me and told me what their job was that day. One nurse brought me a few blankets so I could put them under my knees (they don't do well straight out for any length of time, my back either) and as Dr. A was looking at my left hand (the same hand the prior nurse blew a vein in) I heard the head nurse read out all my information to the room. When she got to Ehlers Danlos Syndrome Type 3, Dr A looked at her and said "Type 3?" then on confirmation nodded like that was a good thing. I was shocked and asked her if she knew what EDS was. She said yes that they were made to go through that when she was studying (she was quite young). I told her that I had only ran into one or two doctors in my home town that knew what EDS was before meeting me. She then rhymed off the main symptoms and then "Am I right?", and she was. The only thing was she said that they were taught that most people were tall and lanky which I laughed and said obviously not. Dr. A then tried to get the IV started in my left hand. She went in and pretty much right back out and said that I did have very tricky veins, and she had never had a failed IV start. She stood there for a moment and then said that we obviously had to go to the other hand (that was still bruised from the bloodwork the week prior) so they started to move all the equipment to the other side and she said she was going to give me some 'happy gas' as it worked to make the veins more open and easy to get (and obviously keep me calm). After I was blissfully floating around she got the IV in the right hand and taped it down massively. A few more adjustments and she started the anesthetic and I was out.
I woke up in the recovery room and asked if I was in pain (nope - they gave me pain killers when I was under the anesthetic) and if i was okay. All I wanted was to get the IV out which they kept telling me would be soon. I got moved to the final post-op area and that's when they let mom in. I was feeling quite nauseaus and told the nurse that but my doctor had not put that I could get anything so they kept saying they had to ask him (he was in surgery all morning). Once mom was in the room I got her to bug the nurses about getting the IV out. Finally one came to do it and mentioned that I must really not like the IV's as normally people dont even notice that they have them until they are fully awake from the anesthetic. I told her that it was very painfull and was causing me a whole lot more than my jaw from the surgery. After drinking a glass of apple juice she finally came to take it out. This is when she noticed that my right hand was already bruised from last week's blood draw and this IV and that my left hand was all taped up because of the two failed IV starts on it. After that was out I was ready to go so they sent mom to get the van while I got dressed and then I was out of there.
Got home and was kinda dizzy but not too bad so went to have a nap. Was very unimpressed with my mom as I had asked her to move my brother's visit to K until the next day but she didn't and figured it didn't matter because I would be sleeping all day (not sure where she got that idea from). So I got to spend a good 1.5 hours sitting in my room doing nothing until he went home. I was tired and still a little groggy but not bad. My jaw was hurting but mainly it was my throat that was really sure from the tube they put down.
Worryingly we think I might have had an adverse reaction to the general anesthetic. Starting tuesday morning all the way until sunday morning I had major stomach issues. Anything I ate just went straight through me and I was starting to get dehydrated and very weak. It seems like that has finally past but we do worry that this is from the general anesthetic. If I start having issues with it, we are in trouble!!!
Well as you know, I was quite nervous about going into this (minor) surgery because of what happened when I had the endoscope back in January. Because I am 'latex sensetive', I get booked into the special OR and get done first thing in the morning. One thing to point out is that I am NOT allergic to latex, but because of how I react to different adhesives and a few other issues that show a sensetivity to latex I have been told that I need to put down that I need to avoid latex because, especially with EDS, you never know when a sensetivity is going to turn into a full blown allergy - and with latex you need to be more aware than a lot of other allergens because of how and why you normally come into contact with latex (medical reasons mainly). Anyways, I had to be at the hospital at 6am as I was going to have surgery at 8am. I stayed awake up on the computer for a while, then went down to have a very quick shower and pack up my stuff for the day. I think it was around 1:30am that I acutally got to sleep and woke up around 5, so not too much sleep!
We get to the hospital and of course the staff at the check-in area does not come on until 6 so we had to sit and wait for a little bit. It really helps that there is a full Tim Hortons right next to the check-in area that were getting set up around this time so the scent of coffee was even more magnified to those of us who could not eat or drink. Got checked in at the first 'station' and then was sent up to the third floor to check into the surgical department. Then we sat and waited some more. Finally I was called back to get 'dressed', the lovely mesh underwear, hospital bottoms that don't do up and double gowned so your not flashing anyone lol. I then got mom and we went into the second pre-op area to wait for the nurse to go over everything. The nurse calls me back so mom and I head back and there are two nurses - one is a student nurse! All that was going through my mind was there was no way a student nurse was going to try for an IV! The student nurse goes over all my information in very fine detail and then the nurse said that she would get my IV started. I kinda got worried and said that they usually start my IV in the OR because I am a hard stick. She said that she bet she could get it and I was apprehensive about it but still said it was hard but okay. I quickly went to the bathroom first (when I get an IV in I do my best to not move at all!). During the time I was in the bathroom, mom went over with the nurses just how hard of stick I was. I get back and the student nurse kept going over my info and asked me when the last time I urinated was lol. We all just kinda looked at her like 'are you serious?' then I said 'uh, I just went'. Then they told me to get up on the bed.
The nurse looked at my veins in my arms (which I told her never work and that they have to use my hands), she then looked at my hands and went and got a warm blanket to put on my hands. She then was sure that she had a vein in my left hand so went for it. Of course, she didn't get it but even though I knew the instant that she put the vein in that it wasn't going to work, she didn't and spent a good amount of time digging around which was so painfull I was in tears when she was done. She finally pulled it out and goes 'You are a hard stick, guess I should have listened to you'. At that point my emotions and fear kicked in and I wouldn't even look at her or talk to her. Mom answered all the questions after that. Just as we were about to leave the nurse asks am I not allergic to latex and mom said that I am sensetive to it so she told me that I needed to take the little botties off and if I had my own socks I could put them on. Apparently the booties do have a small amount of latex in them (which made sense as to why my feet were so itchy!). At this point the nurse takes me on my bed and says mom can come as well and we head up to the last pre-op area. This is the first time that someone has been allowed to go this far with me. Usually there are no non-medical or non-surgical people allowed in this room, but this time most of the people waiting for surgery had someone else there with them.
I don't think the nurses in the pre-op room are used to patients coming up having already had a failed IV start as they weren't really sure if they should start it or what they were supposed to be doing. The anesthesiologist (we'll call her Dr. A as I can't remember her name and she was an anesthesiologist :) )came in and started asking me a lot of questions about my information and then mainly about why I was on a beta blocker. She got quite involved about what my normal resting rate is, did I feel it when it raced etc. She then started asking about the IV start - is it normally hard, was I stressed about it, was I anxious at the moment etc. She was very very nice, she then checked my hands (didn't even look at my arms which showed she trusted my knowledge) and asked the nurses in the pre-op to get me a warm blanket for me to put my hands in and to keep them in the blanket until I got to the OR. My dentist came in and talked to me, another nurse talked to me and after a short while (I heard one nurse say that I couldn't be nervous as I was just sitting there reading while all the doctors came and went lol) they told me it was time to go to the OR.
I got into the OR and all the doctors and nurses introduced themselves to me and told me what their job was that day. One nurse brought me a few blankets so I could put them under my knees (they don't do well straight out for any length of time, my back either) and as Dr. A was looking at my left hand (the same hand the prior nurse blew a vein in) I heard the head nurse read out all my information to the room. When she got to Ehlers Danlos Syndrome Type 3, Dr A looked at her and said "Type 3?" then on confirmation nodded like that was a good thing. I was shocked and asked her if she knew what EDS was. She said yes that they were made to go through that when she was studying (she was quite young). I told her that I had only ran into one or two doctors in my home town that knew what EDS was before meeting me. She then rhymed off the main symptoms and then "Am I right?", and she was. The only thing was she said that they were taught that most people were tall and lanky which I laughed and said obviously not. Dr. A then tried to get the IV started in my left hand. She went in and pretty much right back out and said that I did have very tricky veins, and she had never had a failed IV start. She stood there for a moment and then said that we obviously had to go to the other hand (that was still bruised from the bloodwork the week prior) so they started to move all the equipment to the other side and she said she was going to give me some 'happy gas' as it worked to make the veins more open and easy to get (and obviously keep me calm). After I was blissfully floating around she got the IV in the right hand and taped it down massively. A few more adjustments and she started the anesthetic and I was out.
I woke up in the recovery room and asked if I was in pain (nope - they gave me pain killers when I was under the anesthetic) and if i was okay. All I wanted was to get the IV out which they kept telling me would be soon. I got moved to the final post-op area and that's when they let mom in. I was feeling quite nauseaus and told the nurse that but my doctor had not put that I could get anything so they kept saying they had to ask him (he was in surgery all morning). Once mom was in the room I got her to bug the nurses about getting the IV out. Finally one came to do it and mentioned that I must really not like the IV's as normally people dont even notice that they have them until they are fully awake from the anesthetic. I told her that it was very painfull and was causing me a whole lot more than my jaw from the surgery. After drinking a glass of apple juice she finally came to take it out. This is when she noticed that my right hand was already bruised from last week's blood draw and this IV and that my left hand was all taped up because of the two failed IV starts on it. After that was out I was ready to go so they sent mom to get the van while I got dressed and then I was out of there.
Got home and was kinda dizzy but not too bad so went to have a nap. Was very unimpressed with my mom as I had asked her to move my brother's visit to K until the next day but she didn't and figured it didn't matter because I would be sleeping all day (not sure where she got that idea from). So I got to spend a good 1.5 hours sitting in my room doing nothing until he went home. I was tired and still a little groggy but not bad. My jaw was hurting but mainly it was my throat that was really sure from the tube they put down.
Worryingly we think I might have had an adverse reaction to the general anesthetic. Starting tuesday morning all the way until sunday morning I had major stomach issues. Anything I ate just went straight through me and I was starting to get dehydrated and very weak. It seems like that has finally past but we do worry that this is from the general anesthetic. If I start having issues with it, we are in trouble!!!
Sunday, June 17, 2012
Dental Surgery
So right now I am watching the end of the MMVA's for something to do. After that I have to go have a quick shower and get to bed as we have to be at the hospital for 6am in the morning! The hospital is 20 minutes away. As far as I know only fillings are going to be done (and I will tell him I do not want extractions - next week is too big to have to deal with the problems following any extractions). My right hand is very bruised up so they can not use it to put the IV in, meaning they only have the option of my left hand and I know they are going to want to use my arm or my wrist but I do not want either of those. I certainly hope that they wait and put the IV in after they have taken me to the OR because IV lines are very painful to me (even though I am constantly told they are not supposed to hurt). I haven't admitted it to anyone here but I am very scared of actually waking up during the surgery like with what happened when I had the scope in January. I am worried that something might go wrong because I was told to bring all my meds with me which they normally don't ask for (I do know that the hospital is going through administration changes and changing a bunch of procedures). I don't have much time to actually recover from this surgery.
I go in tomorrow for the surgery, have Tuesday to recover, driving 4.5 hours on Wednesday and going to a concert / show Wednesday night (The Jackson's!!!!!), staying over then driving back home on Thursday and then Friday we have K's 1/2 birthday (he is a Christmas time baby like me, same date actually). July is quite busy too. Some different opportunities have come up that I do not want to see so even though it's been a few years since I have been to a concert, I will be going to THREE within a month.
Anyways, better wrap this up so I can go and get showered and gather up all the stuff that I need to take with me to the hospital. I will try to update tomorrow night and let you know how it went.
I go in tomorrow for the surgery, have Tuesday to recover, driving 4.5 hours on Wednesday and going to a concert / show Wednesday night (The Jackson's!!!!!), staying over then driving back home on Thursday and then Friday we have K's 1/2 birthday (he is a Christmas time baby like me, same date actually). July is quite busy too. Some different opportunities have come up that I do not want to see so even though it's been a few years since I have been to a concert, I will be going to THREE within a month.
Anyways, better wrap this up so I can go and get showered and gather up all the stuff that I need to take with me to the hospital. I will try to update tomorrow night and let you know how it went.
All Health - MRI, Bloodwork & Dr's
So I never heard back from the OS that I saw back in march so I gave in and called my GP's (Dr.B) office to set up an appointment to have an MRI. I got called back on Monday saying that they were going to schedule the MRI but Dr B needed to do blood work before it was ordered. This left me quite confused as I have had numerous MRI's and never had to have blood work before. Anyways, I go in on Tuesday to get the requisition sheet for the blood work and asked her to add the Vitamin D test on to that as I hadn't had a chance to get it yet. I also had to fill out the forms (Are you claustrophobic? Ever been a metal worker? etc), but when it asked for previous surgeries I asked if they couldn't just print off a sheet as that would be a lot easier (she said since I have had so many MRI's already she didn't think it would be a big deal leaving it blank). So I got all that done and then went to the lab.
So I head down to the lab and J looks up and tells me to take a seat. I haven't seen J in the lab in a long time and usually P is the one that 'takes charge' when I am there. P sees me so they do the man that came in behind me first so they had time to do mine. I go in to the room and hand her my band aids (she kinda just laughed). She waits until J is free and then calls her into the room for help. P gets the butterfly and looks at my right hand. At this point I still had the bruise from the second attempt on the 1st so she couldn't use that spot (even though it's the easiest). She finds her vein and sticks it in and finally finds it after a little digging. She finally gets the vein but it goes slowly. J then looks at me and goes "Your not normally this hard are you?" and P just looked at her and gave her a luck while I laughed. After a while I hear P go "Oh Shit!" and felt the needle being pulled out quickly. That's when she apologized over and over again and said that my hand was going to really bruise and apologized again. I just told her not to worry and that it was okay. Then J goes "We have to do another one" and asked what my other hand was like. I hesitated and said that my left hand might not be a good idea because I have surgery the next Monday and didn't want to loose too many veins. P and J disagreed and P thought they could do both tests and J thought there wasn't enough. I was given a choice of doing another stick then or have the possibility of having to come back to redo the tests. I chose to stop for the day. [Note: This is the Sunday after and I still have a massive bruise on my right hand :S]
That was on Tuesday, my mom had a dr's appointment on Thursday when Dr. B's secretary told my mom that the blood work was in and to have me call her (but I didn't get the message until after the office closed for the day). Then on Friday I got a call from the MRI department saying they had a date on July 7th for my MRI, unfortunately I had to decline that date because we won't be here as we are going out of town. So I go on July 9th at 5pm to get the MRI on my right shoulder. Thankfully the xrays I had done a couple of months ago will be okay so I don't have to get those redone.
So I head down to the lab and J looks up and tells me to take a seat. I haven't seen J in the lab in a long time and usually P is the one that 'takes charge' when I am there. P sees me so they do the man that came in behind me first so they had time to do mine. I go in to the room and hand her my band aids (she kinda just laughed). She waits until J is free and then calls her into the room for help. P gets the butterfly and looks at my right hand. At this point I still had the bruise from the second attempt on the 1st so she couldn't use that spot (even though it's the easiest). She finds her vein and sticks it in and finally finds it after a little digging. She finally gets the vein but it goes slowly. J then looks at me and goes "Your not normally this hard are you?" and P just looked at her and gave her a luck while I laughed. After a while I hear P go "Oh Shit!" and felt the needle being pulled out quickly. That's when she apologized over and over again and said that my hand was going to really bruise and apologized again. I just told her not to worry and that it was okay. Then J goes "We have to do another one" and asked what my other hand was like. I hesitated and said that my left hand might not be a good idea because I have surgery the next Monday and didn't want to loose too many veins. P and J disagreed and P thought they could do both tests and J thought there wasn't enough. I was given a choice of doing another stick then or have the possibility of having to come back to redo the tests. I chose to stop for the day. [Note: This is the Sunday after and I still have a massive bruise on my right hand :S]
That was on Tuesday, my mom had a dr's appointment on Thursday when Dr. B's secretary told my mom that the blood work was in and to have me call her (but I didn't get the message until after the office closed for the day). Then on Friday I got a call from the MRI department saying they had a date on July 7th for my MRI, unfortunately I had to decline that date because we won't be here as we are going out of town. So I go on July 9th at 5pm to get the MRI on my right shoulder. Thankfully the xrays I had done a couple of months ago will be okay so I don't have to get those redone.
Tuesday, May 29, 2012
Appointment with Dr. B (GP)
This appointment actually happened on May 24th but I am just getting around to typing it up now as my shoulder is still causing problems and haven't had much time that I could sit down and concentrate and remember all about the appointment. Originally this appointment was made to discuss my shoulder issues, go over my report from Dr. M (the crappy OS mentioned in this post) and to get my medications refilled. But of course that isn't really how it turned out.
I had a mid-afternoon appointment and knew that I would end up being there a while as there were a handful of people already in the waiting room when I arrived. I finally got called and went into the nurse's room (we will call the nurse "P") where she does the pre-appointment part where she asks why you are there, gets any paperwork ready and does all your vitals. Thankfully I had made a list of all the things that I needed to get addressed during the appointment. P did my vitals then I started on my list of issues. I gave her all the paperwork for my dental surgery (Going to be on June 18th for those who are interested - just fillings though), asked about getting my vitamin D levels checked, gave her a list of the medications that I needed refilled and mentioned about the xrays I had done (both knees, right hip and right shoulder before seeing Dr. M; right shoulder a couple of weeks ago when I injured it). P filled out all the paperwork for the dental surgery, wrote up a blood work sheet so I can get my Vit. D levels checked, printed off the latest shoulder xray (normal of course) and printed out the medications that I needed to refill. Then it was just waiting for my doctor to become available (a drug rep and the building owner stopped by just before my appointment so they got in first :( ). I was quite nervous about seeing Dr. B based solely on the issue with Dr. M and the fact that my mom was not at this appointment with me (Dad was out of town and mom had to be at home for when K got home from school). I am going to put all of what happened in little sections so I don't forget anything and it doesn't get too confusing!
Pre-Op Paperwork - He read through the diagnosis's that I have (Mitral Valve Prolapse is on there so my old cardiologist must have diagnosed me with it, he just put a question mark beside it), basically MVP, EDS, Sinus Tachycardia and Syncope are listed. All my medications and doses are also on the form. Dr. B then pulls out a report he got from the anesthesiologist and was quite impressed by it. It went over the no locals aspect and said that they had to be very very careful when moving me (this is something that I did NOT tell him), everything should be routine but that I may need to have emergency intubation and resuscitation which sounded a little scary to me but my doctor seemed pleased by it and said that it was one of the longest reports that he has ever seen from an anesthetist.
Testing - Dr. B agreed completely with the suggestion of getting my vitamin D levels rechecked to see where they are and what we need to do in regards to dosing the vitamins that I do take on a daily basis. I then asked if / when I should get another DEXA scan as it's been slightly more than two years since I had my last one and I have been on an osteoporosis medications for 20 months now and would like to know if we are making progress or if we should be changing things up or what ever. At the very least a new baseline should be established. Dr. B fully agreed with me but does not want to do ANYTHING until after the surgery. He then checked my chart and saw the medication that I am on for the osteoporosis and says that there is a new formula of the medication that you take weekly instead of monthly that he thinks will be a better fit for me. You don't have to follow any of those stupid don't drink for x minutes, don't lie down for y hours, don't eat for z minutes. Then the fact that it has to be the first thing in your stomach when you wake up and taken with an entire bottle of water which makes it tricky as I take my morning meds right when I wake up also. Apparently this new formula of the drug does not have all the restrictions that the old one has and is supposed to be easier on the stomach which is definitely important especially after discussing gastroparesis and medication absorption. He also says that it should most likely stop at least part of the heartburn issues that I get after taking it. The only down side to this medication is that I have to take it weekly instead of monthly but that's not a big deal as I do up a weekly pill organizer every week anyways to throw it in.
Medications Refilled - Figured this would just be a quick signature on the already printed off script but was surprised when he went to hand me the paper and then quickly pulled it back saying "Wait a minute, what do we have you on now?" (This is because we switch between two different long acting and two different breakthrough meds to keep down tolerance). He looked at what I was on and said that there is a new medication either just out or coming out soon that is a narcotic but it also has neuropathic pain reducing qualities too it as well. I asked him if that meant I might be able to combine my pain medication as well as the medication that I use for nerve pain but he wasn't sure but that we would look into it more after I have the surgery. He didn't give me the name of it as he wanted to do some more research on it himself and isn't even sure if it is out on the market yet.
Shoulder Issues - The final issue was my shoulder. He asked how the appointment with the OS went and I told him all that happened. He very quickly skimmed the report and at the end it said that I had not decided if I wanted a new MRI ordered or not (huh??). Anyways I told him that he wanted me to do physio but would not set limits, when Dr. B asked why I said I didn't know but that I wanted a time limit to try it or something and Dr. B says that's totally reasonable and asked why he wouldn't so when I told Dr. B that he said physio doesn't work like that he was confused. He seemed disappointed because this doctor is so young and Dr. B thought that he would be the best chance because he might be more open minded. He then told me that he wanted me to call the OS's office to get a new MRI ordered and if the OS won't order it then to just go right back to Dr. B because he feels it is definitely needed. I then asked him if I could have a copy of the report for my files and he said of course and printed it out for me. I told him that I just like to keep everything together just in case I need it down the line and he said that with the number of doctors and problems I have going on that that is a smart idea :)
So I left the appointment with a stack of papers - report of the shoulder xray I had just after injuring it, prescription for my pain medications, a requisition to get bloodwork done again, a copy of the forms that had been filled out for the surgery, the report from the OS and a card to go back two days after my dental surgery.
However, by the time I had read through the report from the OS (Dr. M) I was furious!!! So many inaccuracies and plain out lies! I gave in and called the office on tuesday (May 29th) and as of today (June 1st) I have not heard anything from the office. I am going to give it another week and contact my GP again about it. After reading the report I don't really care to ever see this OS again. There is enough contradictions, lies and things completely omitted that it is going to end up being an entire other post that I will get up this weekend (hopefully!).
I had a mid-afternoon appointment and knew that I would end up being there a while as there were a handful of people already in the waiting room when I arrived. I finally got called and went into the nurse's room (we will call the nurse "P") where she does the pre-appointment part where she asks why you are there, gets any paperwork ready and does all your vitals. Thankfully I had made a list of all the things that I needed to get addressed during the appointment. P did my vitals then I started on my list of issues. I gave her all the paperwork for my dental surgery (Going to be on June 18th for those who are interested - just fillings though), asked about getting my vitamin D levels checked, gave her a list of the medications that I needed refilled and mentioned about the xrays I had done (both knees, right hip and right shoulder before seeing Dr. M; right shoulder a couple of weeks ago when I injured it). P filled out all the paperwork for the dental surgery, wrote up a blood work sheet so I can get my Vit. D levels checked, printed off the latest shoulder xray (normal of course) and printed out the medications that I needed to refill. Then it was just waiting for my doctor to become available (a drug rep and the building owner stopped by just before my appointment so they got in first :( ). I was quite nervous about seeing Dr. B based solely on the issue with Dr. M and the fact that my mom was not at this appointment with me (Dad was out of town and mom had to be at home for when K got home from school). I am going to put all of what happened in little sections so I don't forget anything and it doesn't get too confusing!
Pre-Op Paperwork - He read through the diagnosis's that I have (Mitral Valve Prolapse is on there so my old cardiologist must have diagnosed me with it, he just put a question mark beside it), basically MVP, EDS, Sinus Tachycardia and Syncope are listed. All my medications and doses are also on the form. Dr. B then pulls out a report he got from the anesthesiologist and was quite impressed by it. It went over the no locals aspect and said that they had to be very very careful when moving me (this is something that I did NOT tell him), everything should be routine but that I may need to have emergency intubation and resuscitation which sounded a little scary to me but my doctor seemed pleased by it and said that it was one of the longest reports that he has ever seen from an anesthetist.
Testing - Dr. B agreed completely with the suggestion of getting my vitamin D levels rechecked to see where they are and what we need to do in regards to dosing the vitamins that I do take on a daily basis. I then asked if / when I should get another DEXA scan as it's been slightly more than two years since I had my last one and I have been on an osteoporosis medications for 20 months now and would like to know if we are making progress or if we should be changing things up or what ever. At the very least a new baseline should be established. Dr. B fully agreed with me but does not want to do ANYTHING until after the surgery. He then checked my chart and saw the medication that I am on for the osteoporosis and says that there is a new formula of the medication that you take weekly instead of monthly that he thinks will be a better fit for me. You don't have to follow any of those stupid don't drink for x minutes, don't lie down for y hours, don't eat for z minutes. Then the fact that it has to be the first thing in your stomach when you wake up and taken with an entire bottle of water which makes it tricky as I take my morning meds right when I wake up also. Apparently this new formula of the drug does not have all the restrictions that the old one has and is supposed to be easier on the stomach which is definitely important especially after discussing gastroparesis and medication absorption. He also says that it should most likely stop at least part of the heartburn issues that I get after taking it. The only down side to this medication is that I have to take it weekly instead of monthly but that's not a big deal as I do up a weekly pill organizer every week anyways to throw it in.
Medications Refilled - Figured this would just be a quick signature on the already printed off script but was surprised when he went to hand me the paper and then quickly pulled it back saying "Wait a minute, what do we have you on now?" (This is because we switch between two different long acting and two different breakthrough meds to keep down tolerance). He looked at what I was on and said that there is a new medication either just out or coming out soon that is a narcotic but it also has neuropathic pain reducing qualities too it as well. I asked him if that meant I might be able to combine my pain medication as well as the medication that I use for nerve pain but he wasn't sure but that we would look into it more after I have the surgery. He didn't give me the name of it as he wanted to do some more research on it himself and isn't even sure if it is out on the market yet.
Shoulder Issues - The final issue was my shoulder. He asked how the appointment with the OS went and I told him all that happened. He very quickly skimmed the report and at the end it said that I had not decided if I wanted a new MRI ordered or not (huh??). Anyways I told him that he wanted me to do physio but would not set limits, when Dr. B asked why I said I didn't know but that I wanted a time limit to try it or something and Dr. B says that's totally reasonable and asked why he wouldn't so when I told Dr. B that he said physio doesn't work like that he was confused. He seemed disappointed because this doctor is so young and Dr. B thought that he would be the best chance because he might be more open minded. He then told me that he wanted me to call the OS's office to get a new MRI ordered and if the OS won't order it then to just go right back to Dr. B because he feels it is definitely needed. I then asked him if I could have a copy of the report for my files and he said of course and printed it out for me. I told him that I just like to keep everything together just in case I need it down the line and he said that with the number of doctors and problems I have going on that that is a smart idea :)
So I left the appointment with a stack of papers - report of the shoulder xray I had just after injuring it, prescription for my pain medications, a requisition to get bloodwork done again, a copy of the forms that had been filled out for the surgery, the report from the OS and a card to go back two days after my dental surgery.
However, by the time I had read through the report from the OS (Dr. M) I was furious!!! So many inaccuracies and plain out lies! I gave in and called the office on tuesday (May 29th) and as of today (June 1st) I have not heard anything from the office. I am going to give it another week and contact my GP again about it. After reading the report I don't really care to ever see this OS again. There is enough contradictions, lies and things completely omitted that it is going to end up being an entire other post that I will get up this weekend (hopefully!).
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