December 11th - GP Visit

Mainly this appointment was to get a few refils on medications and to tell him about my neck and get him to order some tests.  Because of the last appointment I had my Mom decided to go with me as backup.  I got me refills with no problems and then told him about my optomotrists appointment last month.  How Dr. D. wanted me to have a CT Scan to check out the right eye socket as I have been having weird feelings in the area.  

He looked up the old bone scan report to read it through again and when he came to one part where it showed degeneration in the joint he just laughed and said "She has EDS of course there is degeneration in the joints, that's what it is!"  Mom and I just looked at each othere and I though that maybe he is actually starting to get it! My GP wasn't sure what to do with that but just grinned and said "I know what will come back but we will order it anyways" so he filled out the forms to get my head and eye scanned. 

I then told him about my neck and how it was really bothering me.  He didn't seem to really want to do anything but then my mom asks if they could not just scan my neck while they were doing the CT to check for problems.  He agreed to that and said he wasn't sure they would do it but that he would request it.  Before having the scan though I had to get bloodwork done and since it was about another few weeks until I had my thyroid tested again he just lumped it all in together for me.

Mom then asked about how often I should be having bone scans and went on to explain my old Rheumy's therory of getting them done every other year to watch for problems.  My GP agreed except said we dont want too much radiation as it could cause more problems but that he agrees that it should be repeated every 2 or 3 years (3 if no problems come up, 2 if I have a bad injury or something seems 'off').

As we are leaving the receptionist suggests that I go get blood work done now as the lab was still open and she couldn't process the CT request until she had the results so mom and I stopped at the clinic on the way home.   Thankfully my girl was there and just laughed when she saw me.  Like usually she got it in using 'our' way of a butterfly between my knuckles and remarked that one of us was getting better at blood draws.  I mentioned this to mom on the way home and she says she thinks its because both me and my blood taker are very comfortable together and that there was no more stress or worry on either our sides anymore.  I know she won't try digging and will get it or pull out and she has learned where the best place for geting blood is.  It's a win-win on both sides.

Of course I came home and crawled into bed.  However I forgot the crucial step of having something sugary to drink and felt horrible when I woke up.  Took a few days to get over that as since I didn't know I was getting blood drawn I didn't load up on water before the test and then didn't get something in me when I got home.  I will NOT make that mistake again!

Long overdue!!

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!

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 :(

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).

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

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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.

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.