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 :(
Showing posts with label tests. Show all posts
Showing posts with label tests. Show all posts
Monday, November 4, 2013
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.
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 :)
Bone Scan - Results
Bone Scan, Spot Views and Blood Flow and Pool:
History: Patient has Ehlers-Danlos syndrome. On multiple medications. The patient complains of pain all over, including the back, shoulders. Pain at the hips. Muscle spasms. Decreased range of motions.
Technique: Following the intravenous injection of technetium 99m MDP, whole-body blood flow and pool images were acquired along with whole-body delayed imagine and spot imaging involving the head, neck, feet, forearms, hands and wrists.
Findings: Comparison bone scan of 2010
On the whole-body blood flow and pool imaging, no regions of hyperemia are identified. On the whole-body delayed imaging, there is increased uptake involving the maxilla especially towards the left lateral aspect and also at the right mandible laterally. This is felt to be due to prior dental intervention. There is a new punctate focus of increased uptake however superimposed to the region just above the right orbit, of uncertain etiology. This was not seen previously.
No widespread abnormal uptake is seen however to suggest metastatic disease.
There is some mild increased uptake at the right patellofemoral joint which could represent some mild degenerative change.
On imaging at the feet, no significant punctate region of increased uptake is seen to suggest significant arthritic change or underlying fracture or other abnormality. Spot imaging at the forearms also demonstrates no punctate region of increased uptake to suggest an underlying abnormality.
Impression: No widespread abnormal uptake to suggest metastatic disease. There may be some mild degenerative change at the right patellofemoral joint and evidence of prior dental intervention at the mandible and maxilla. There is a punctate focus of increased uptake overlying the superior aspect of the right orbit, of uncertain etiology. Further assessment via CT of the head and orbits could be acquired to see if there is a true underlying lesion at this site.
History: Patient has Ehlers-Danlos syndrome. On multiple medications. The patient complains of pain all over, including the back, shoulders. Pain at the hips. Muscle spasms. Decreased range of motions.
Technique: Following the intravenous injection of technetium 99m MDP, whole-body blood flow and pool images were acquired along with whole-body delayed imagine and spot imaging involving the head, neck, feet, forearms, hands and wrists.
Findings: Comparison bone scan of 2010
On the whole-body blood flow and pool imaging, no regions of hyperemia are identified. On the whole-body delayed imaging, there is increased uptake involving the maxilla especially towards the left lateral aspect and also at the right mandible laterally. This is felt to be due to prior dental intervention. There is a new punctate focus of increased uptake however superimposed to the region just above the right orbit, of uncertain etiology. This was not seen previously.
No widespread abnormal uptake is seen however to suggest metastatic disease.
There is some mild increased uptake at the right patellofemoral joint which could represent some mild degenerative change.
On imaging at the feet, no significant punctate region of increased uptake is seen to suggest significant arthritic change or underlying fracture or other abnormality. Spot imaging at the forearms also demonstrates no punctate region of increased uptake to suggest an underlying abnormality.
Impression: No widespread abnormal uptake to suggest metastatic disease. There may be some mild degenerative change at the right patellofemoral joint and evidence of prior dental intervention at the mandible and maxilla. There is a punctate focus of increased uptake overlying the superior aspect of the right orbit, of uncertain etiology. Further assessment via CT of the head and orbits could be acquired to see if there is a true underlying lesion at this site.
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)."
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.
Sunday, June 17, 2012
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.
Friday, June 1, 2012
Pre-Admission Appointment (Dental Surgery)
I honestly can't remember if I have posted this yet or not (been a busy few weeks health wise!) but I am very lucky in that I will be having my dental surgery on June the 18th! They had a date pop up and I was the first person they thought of so called to set it up. I had the appointment with my family doctor to clear me for surgery last Thursday, had already had the anesthesiologist consult a while ago so all that was left was the pre-admission clinic which was nice and early this morning (at 8:45!! and it takes us at least 20 minutes to get there). We get there, I register and up to the PAC unit we go.
After a short while I get called in to the interview room and must admit that this was the most thorough nurse I have ever come across in the PAC area. I was in with her for over 30 minutes! For some reason my file lists a lot more allergies than I normally write down (about 3 different antibiotics and one medication that neither of us has ever even heard of!) so we had to go through those and I had to go out and ask mom about some reactions to problems I had as a young child. We went through all of my medications and the reasons I am on them. She asked about all my prior surgeries (this is actually going to be my tenth surgery in my life) and all my experiences with anesthetics. She went through my listed disorders (What's EDS? What's Autonomic Dysfunction?) and gave me all of my paperwork to take home. She then was deciding what pre-op testing that I needed done. I told her that I had just had an echo by my cardiologist about a month ago and everything was fine so I didn't have to have the EKG done. She was going over the sheet as to which conditions and disorders warranted having to have bloodwork done. She was slightly stumped on the CNS disorders and whether my ANS disorder would have any similarities but finally it was because I was anemic for years that lead to the yes, you need bloodwork. We finished up and she sent me off to the lab.
I get at the lab and registered and ask if it is possible for them to do my vitamin D level testing at the same time so I could avoid another set of bloodwork but as I did not fast they said it was against their policy (We don't believe that I fasted at the other clinic so will call that lab on Monday to ask). I waited a while and was called back. Nurse #1 (We will call her N1) went over what needed to be done and I told her that I was a very hard stick and when she asked which elbow they usually used I just looked at her and said that they didn't, they use my hand now. For some reason my left hand was swollen (having wrist issues with it lately) so it couldn't be used so after feeling around all over both arms she settles on the right hand between my pointer and middle finger. She goes and gets out a butterfly and settles in to do the stick all the while apologizing for having to use my hand. I tell her that I am always told that but that my hand is a lot less painful than the elbow for me, I barely feel the hand most times. I sit there and feel it go in and then feel digging. That is abnormal because usually it is quite easy in the hand. Then Nurse #2 (N2) enters the room and I hear "Oh you are getting lots of practice today, using a butterfly now and you have a baby up next to learn on". My heart just dropped. She was a student. Now don't get me wrong, I know students have to learn but why on me? It's already hard enough to get me, she even knows that we have very limited areas to try and it was becoming obvious that there was no chance she was going to find a vein. N1 looks at N2 and says that maybe it would be best for N2 to try and did she want to keep that needle in or try a new spot. I spoke up then and said it was hurting so N1 removed the butterfly. Of course as N2 was bandaging me up (and of course I only brought one band aid I was going to end up with tape) N1 had to go and find more butterfly needles. N2 is talking to me and she checks my arms and then asks if I want her to try in the same hand (where else was she going to go????) and I said it was fine. N1 comes back and gives N2 the butterfly so I get another poke, this time between my middle and ring finger, and N2 comments that I have very thick skin to the point it's hard to get the needle in and how unfortunate it is for me to have thick skin and bad veins so I go into the little EDS spiel. I finally ask if N2 has it and she says yes but it is coming slow. Then N1 asks N2 is she needed something and I hear N2 say no, it's stopped now anyway. N2 takes the needle out and asks N1 to get the small 'baby' vials instead of 'adult' vials so not as much blood is needed. All while this is going on both N1 and N2 are apologizing (which is very awkward - I mean what am I supposed to say to that? That's okay I don't mind the torture?). N2 finally tapes me all up and as I am leaving the room she calls out "Sorry we had to poke you twice". I go back into the waiting room and mom is just shaking her head. "I had hoped that they weren't talking to you" she said as she heard the apology for the two pokes.
So we drive home and I go to change the band aid and tape (to get the tape off asap) and notice that the first hole is quite large so not sure what really happened there. I taped them up and went right to bed to sleep for a few hours. Slightly dizzy when I got up but not too bad thankfully. This is the first time that I have actually had two holes on one hand. Usually they try one hand and if they don't get it they go to the other one but because of swelling it was out so I thankfully am going to have one bruised and sore hand in the morning. Plus have to go back again next week to do it again to get my Vitamin D levels checked :S
After a short while I get called in to the interview room and must admit that this was the most thorough nurse I have ever come across in the PAC area. I was in with her for over 30 minutes! For some reason my file lists a lot more allergies than I normally write down (about 3 different antibiotics and one medication that neither of us has ever even heard of!) so we had to go through those and I had to go out and ask mom about some reactions to problems I had as a young child. We went through all of my medications and the reasons I am on them. She asked about all my prior surgeries (this is actually going to be my tenth surgery in my life) and all my experiences with anesthetics. She went through my listed disorders (What's EDS? What's Autonomic Dysfunction?) and gave me all of my paperwork to take home. She then was deciding what pre-op testing that I needed done. I told her that I had just had an echo by my cardiologist about a month ago and everything was fine so I didn't have to have the EKG done. She was going over the sheet as to which conditions and disorders warranted having to have bloodwork done. She was slightly stumped on the CNS disorders and whether my ANS disorder would have any similarities but finally it was because I was anemic for years that lead to the yes, you need bloodwork. We finished up and she sent me off to the lab.
I get at the lab and registered and ask if it is possible for them to do my vitamin D level testing at the same time so I could avoid another set of bloodwork but as I did not fast they said it was against their policy (We don't believe that I fasted at the other clinic so will call that lab on Monday to ask). I waited a while and was called back. Nurse #1 (We will call her N1) went over what needed to be done and I told her that I was a very hard stick and when she asked which elbow they usually used I just looked at her and said that they didn't, they use my hand now. For some reason my left hand was swollen (having wrist issues with it lately) so it couldn't be used so after feeling around all over both arms she settles on the right hand between my pointer and middle finger. She goes and gets out a butterfly and settles in to do the stick all the while apologizing for having to use my hand. I tell her that I am always told that but that my hand is a lot less painful than the elbow for me, I barely feel the hand most times. I sit there and feel it go in and then feel digging. That is abnormal because usually it is quite easy in the hand. Then Nurse #2 (N2) enters the room and I hear "Oh you are getting lots of practice today, using a butterfly now and you have a baby up next to learn on". My heart just dropped. She was a student. Now don't get me wrong, I know students have to learn but why on me? It's already hard enough to get me, she even knows that we have very limited areas to try and it was becoming obvious that there was no chance she was going to find a vein. N1 looks at N2 and says that maybe it would be best for N2 to try and did she want to keep that needle in or try a new spot. I spoke up then and said it was hurting so N1 removed the butterfly. Of course as N2 was bandaging me up (and of course I only brought one band aid I was going to end up with tape) N1 had to go and find more butterfly needles. N2 is talking to me and she checks my arms and then asks if I want her to try in the same hand (where else was she going to go????) and I said it was fine. N1 comes back and gives N2 the butterfly so I get another poke, this time between my middle and ring finger, and N2 comments that I have very thick skin to the point it's hard to get the needle in and how unfortunate it is for me to have thick skin and bad veins so I go into the little EDS spiel. I finally ask if N2 has it and she says yes but it is coming slow. Then N1 asks N2 is she needed something and I hear N2 say no, it's stopped now anyway. N2 takes the needle out and asks N1 to get the small 'baby' vials instead of 'adult' vials so not as much blood is needed. All while this is going on both N1 and N2 are apologizing (which is very awkward - I mean what am I supposed to say to that? That's okay I don't mind the torture?). N2 finally tapes me all up and as I am leaving the room she calls out "Sorry we had to poke you twice". I go back into the waiting room and mom is just shaking her head. "I had hoped that they weren't talking to you" she said as she heard the apology for the two pokes.
So we drive home and I go to change the band aid and tape (to get the tape off asap) and notice that the first hole is quite large so not sure what really happened there. I taped them up and went right to bed to sleep for a few hours. Slightly dizzy when I got up but not too bad thankfully. This is the first time that I have actually had two holes on one hand. Usually they try one hand and if they don't get it they go to the other one but because of swelling it was out so I thankfully am going to have one bruised and sore hand in the morning. Plus have to go back again next week to do it again to get my Vitamin D levels checked :S
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!).
Friday, May 25, 2012
Internist / Cardiologist / Gastroenterologist Appointment
(Note - This appointment happened on Tuesday but as this has been a very busy week (at least by my description) I am just getting around to typing it up tonight.)
This appointment was a follow-up appointment to go over the results and findings of the endoscope I had done back in January and the echo cardiogram I had done earlier in the month. I wasn't too happy that I had to wait so long for an appointment to go over the scope results (which I had already got from my GP) but the office manager / nurse there says she likes to have all tests done before follow-up appointments; and really since there wasn't much to go over from the scope it saved me an appointment.
We get taken back to the office and she comes in and asks how things are going (okay) then basically a 'what's this appointment for' type of question. I started with the scope results and was pleased to find out that she saw no sign of celiac disease (yay!) but I definitely had a motility issue going on. She asked how the dilation was and I told her that it does seem to help a bit in the fact that I can eat faster and take bigger bites now (which is a good thing compared to my old normal!) but that it also lead to a LOT more heartburn. She said that unfortunately that is common because they are basically taking some of the elasticity out of the esophagus so things could go down easier which leads to things coming back up easier as well. I told her that I am on a prescription medication (losec - it's not over the counter here) for the problem but it seemed to not be working as well lately and that I have had to use some over the counter antacids as well. She said that was fine and she actually preferred me to do it that way and only when the heartburn is daily and more severe would be when she would increase my prescription medication. She then suggested instead of using the medication (zantac) that because of my absorption issues, bone issues and EDS she suggests that I instead use tums as it would be broken up before swallowing and also has a calcium dose in it as well (mom told me on the way home that my grandmother actually used tums as her calcium supplement). She said the vitamin D deficiency that I have could be partly from malabsoprion but also because our weather but she suggested getting it rechecked to see if they are going up and for me to keep an eye on any vitamin deficiencies as they could occur. Mom asked her about medications and if the gastroparesis has any affect on them and she said that it could as it might take longer for the medication to get into my system and some medications could cause nausea if they are a more rapid release med that ends up sitting there until my stomach is ready to work. I then told her that I had to stop all of my vitamins in pill form as I would take them at supper, eat my supper and then be very very nauseated for a good couple of hours each night. I told her that I now get my vitamin D in drops, my calcium in soft chews and B vitamins in a gummy form. She seemed very impressed that I figured this out on my own and said that that is the best way for me. To use medications / supplements that are easier to absorb instead of just pill form. Okay that's it about the stomach issues.
So we then turn to look at the echocardiogram that I had done and she said that it was perfectly normal and that nothing showed up, the only thing of note was my pulse which we already know about and are dealing with. She talked about mitral valve prolapse as my old cardiologist said I had it but it didn't show up. She said that it is hard to catch in an echo because it is a dynamic problem and an echo is a static test. Meaning that the opening and closing (or backwards closing) of a valve could be missed during a test but that it was okay anyways because the only problem would be if it was regurgitating. I asked about getting dental work and she said that regulations had changed and even if you have MVP you don't necessarily need them any more. She then had me get up on the exam table to take my blood pressure and was slightly concerned because my top number was in the 90's (looking back I had been sitting for a long time then quickly got up and on the table - POTS) and that I should use our home monitor to take readings for an extended time just to see what it shows. Then the shocker - she doesn't think I need to be monitored heart wise anymore! Unless something comes up or my symptoms change she thinks I will be fine. I wasn't completely comfortable with that so she said that she can do an echo every other year or so if that would make me feel better (which it does!).
At one point, when she was going over any changes she asked about weight changes and I said that no there were none even though I was actively trying to lose weight. She then looked at me and told me to stop. She said we already know most of your weight issue is solely a medication issue and a malabsorption issue and as long as things were stable I should just let them be. She said that is the key word for you - stable. If everything in my body is stable then I shouldn't do anything to upset that balance. Mom and I talked about it and realized she is right. We know that my excess weight is not of my doing (did a full month of eating only 1200 calories a day which should have seen my lose 6 - 8lbs and I didn't lose any) and that my body is holding on to it for some reason so I shouldn't try to upset the boat.
Then the final surprise..... I was 'dismissed'!! She feels that we have got things to were they are stable and good and don't really have any active problems going on that haven't been addressed. Of course she will still do the echo's and if ANY things comes up health wise with me she is 100% still going to be there if I need her. Surprisingly I am completely fine with that. She was able to get a lot of questions answered for me over the last few years - the autonomic dysfunction, a few medication changes, all the new gastro type of disorders and a lot better heart monitoring than my last cardio! The only bad part about the appointment was when she told me that there is no new rheumy coming to down and that she truly feels that I need to be seeing doctor's in teaching hospitals and big cities.
Another new post should be up soon about my positive appointment with my GP (and information from the report that I just got back from the ortho!)
This appointment was a follow-up appointment to go over the results and findings of the endoscope I had done back in January and the echo cardiogram I had done earlier in the month. I wasn't too happy that I had to wait so long for an appointment to go over the scope results (which I had already got from my GP) but the office manager / nurse there says she likes to have all tests done before follow-up appointments; and really since there wasn't much to go over from the scope it saved me an appointment.
We get taken back to the office and she comes in and asks how things are going (okay) then basically a 'what's this appointment for' type of question. I started with the scope results and was pleased to find out that she saw no sign of celiac disease (yay!) but I definitely had a motility issue going on. She asked how the dilation was and I told her that it does seem to help a bit in the fact that I can eat faster and take bigger bites now (which is a good thing compared to my old normal!) but that it also lead to a LOT more heartburn. She said that unfortunately that is common because they are basically taking some of the elasticity out of the esophagus so things could go down easier which leads to things coming back up easier as well. I told her that I am on a prescription medication (losec - it's not over the counter here) for the problem but it seemed to not be working as well lately and that I have had to use some over the counter antacids as well. She said that was fine and she actually preferred me to do it that way and only when the heartburn is daily and more severe would be when she would increase my prescription medication. She then suggested instead of using the medication (zantac) that because of my absorption issues, bone issues and EDS she suggests that I instead use tums as it would be broken up before swallowing and also has a calcium dose in it as well (mom told me on the way home that my grandmother actually used tums as her calcium supplement). She said the vitamin D deficiency that I have could be partly from malabsoprion but also because our weather but she suggested getting it rechecked to see if they are going up and for me to keep an eye on any vitamin deficiencies as they could occur. Mom asked her about medications and if the gastroparesis has any affect on them and she said that it could as it might take longer for the medication to get into my system and some medications could cause nausea if they are a more rapid release med that ends up sitting there until my stomach is ready to work. I then told her that I had to stop all of my vitamins in pill form as I would take them at supper, eat my supper and then be very very nauseated for a good couple of hours each night. I told her that I now get my vitamin D in drops, my calcium in soft chews and B vitamins in a gummy form. She seemed very impressed that I figured this out on my own and said that that is the best way for me. To use medications / supplements that are easier to absorb instead of just pill form. Okay that's it about the stomach issues.
So we then turn to look at the echocardiogram that I had done and she said that it was perfectly normal and that nothing showed up, the only thing of note was my pulse which we already know about and are dealing with. She talked about mitral valve prolapse as my old cardiologist said I had it but it didn't show up. She said that it is hard to catch in an echo because it is a dynamic problem and an echo is a static test. Meaning that the opening and closing (or backwards closing) of a valve could be missed during a test but that it was okay anyways because the only problem would be if it was regurgitating. I asked about getting dental work and she said that regulations had changed and even if you have MVP you don't necessarily need them any more. She then had me get up on the exam table to take my blood pressure and was slightly concerned because my top number was in the 90's (looking back I had been sitting for a long time then quickly got up and on the table - POTS) and that I should use our home monitor to take readings for an extended time just to see what it shows. Then the shocker - she doesn't think I need to be monitored heart wise anymore! Unless something comes up or my symptoms change she thinks I will be fine. I wasn't completely comfortable with that so she said that she can do an echo every other year or so if that would make me feel better (which it does!).
At one point, when she was going over any changes she asked about weight changes and I said that no there were none even though I was actively trying to lose weight. She then looked at me and told me to stop. She said we already know most of your weight issue is solely a medication issue and a malabsorption issue and as long as things were stable I should just let them be. She said that is the key word for you - stable. If everything in my body is stable then I shouldn't do anything to upset that balance. Mom and I talked about it and realized she is right. We know that my excess weight is not of my doing (did a full month of eating only 1200 calories a day which should have seen my lose 6 - 8lbs and I didn't lose any) and that my body is holding on to it for some reason so I shouldn't try to upset the boat.
Then the final surprise..... I was 'dismissed'!! She feels that we have got things to were they are stable and good and don't really have any active problems going on that haven't been addressed. Of course she will still do the echo's and if ANY things comes up health wise with me she is 100% still going to be there if I need her. Surprisingly I am completely fine with that. She was able to get a lot of questions answered for me over the last few years - the autonomic dysfunction, a few medication changes, all the new gastro type of disorders and a lot better heart monitoring than my last cardio! The only bad part about the appointment was when she told me that there is no new rheumy coming to down and that she truly feels that I need to be seeing doctor's in teaching hospitals and big cities.
Another new post should be up soon about my positive appointment with my GP (and information from the report that I just got back from the ortho!)
Sunday, May 13, 2012
What A Tuesday!!
So last sunday I was chasing our little jug (half pug and half jack russel) and went to get something from him when he was under the stereo. I got down on my stomach and reached my right arm out under neath like I have done so many many times before. This was different. I felt almost like a tearing sensation instantly. I some how got up and sat back down on the couch. Mom did the normal "Oh now what did you do" until she looked at me. I had the hallmarks of bad pain - sweating, pale, dizzy, and clutching my shoulder. We instantly put ice on it and mom asked if I dislocated it. It didn't feel like that type of pain though. I took pain killers and iced it the next day but by tuesday it was getting worse. I have actually lost ROM (range of motion) which I have never ever done - even after surgery or bad dislocations. My collar bone is sticking out quite a bit further than the other side and I can stick my thumb in behind it. Mom then decided that we needed to go and get it checked out. As we had another appointment that day we stopped off at my GP's office to ask if they could order xrays or if they thought I should go to the ER. The nurse said they would write up a request for it and as I already have pain meds it was decided that the ER wasn't necessary.
That would have to wait though as I had to go and get my yearly echo done on my heart. The test went by with no issues which is great but the doctor doing the echo was interesting. He made small talk for a bit and found out the town that I used to go to school in and wondered how often I go up there. Then he seemed really interested in my EDS and specifically the type of pain that I had, what areas, what treatments I have tried and on and on. Near the end he goes to write something down and then hands me a post-it note with his name and phone number on it and asks that the next time I am in the other town that I give him a call because he would be very interested in seeing if we could get my pain under control! I was absolutely stunned as was my mom. Very greatfull as well that he has taken this interest and actually wants to work WITH me and tackle the chronic pain in my body! When we got home later I, of course, googled him and found out that he is at a clinic called natural drugs & accupuncture therapy.
After the appointment for the echo it was off to the hospital to get xrays done on my shoulder. Thankfully it was not that much of a wait and I was back getting them done in no time. I go in and they ask whay are you here (injured shoulder) and underlying conditions (EDS) and when it happened (sunday). The one lady then goes to line me up but couldn't get one shot so the other lady had to come out to do it. However, this lady was NOT gentle with my shoulder and dug her fingers in all around the front of my shoulder because my collar bone was not 'right'. This lead me to remember that a few years ago when I got my first cortisone shot in that shoulder my rheumy remarked that I had really strange collar bones and that they were hard to 'pin down'. They also did a shot that just about had me in tears which really really sucked! Thankfully I had a few pain pills in my purse that I was able to take right after before the pain set in really badly!
Mom was getting concerned with my shoulder so we tried to make a sling for it that didn't work that well so my mom decided to call my brother as he had shoulder surgery about two months ago (long long story!). He brought the sling over and said I could have it as he didn't need it anymore. He asked me if I dislocated it and I kinda laughed and said no, I do that every couple of days. He had a look of pure shock on his face and I think it kinda is starting to really realize just how bad the EDS can be. I have used the sling a few times just to make it so I can't use my right arm. It is very hard not to as my bad wrist is my left one so I can do most things strictly right handed but not visa versa. The sling also takes a bit of the pressure off of the shoulder but I still can't just 'rest' my shoulder. I can not 'release' the muscles to rest it. I can't do that with any of my joints anymore as I have to always have control or they will go out. Strange thing is that my shoulder hurts the most when I am lying down (which I have read is indicative of a slap tear but I dont know).
The nurse at my GP's office told us to call on tuesday to see if the xrays showed anything (most likely not, they generally dont show up on xrays) and to go from there. Unfortantly my GP is out of the office for two weeks so not sure what the next step will be. Just hoping I dont have to go to the ER to get a referal to an OS quicker as I despise two out of the five or six OS's in this town. One of which just told me a month ago that the only thing wrong was tendonitis!
That would have to wait though as I had to go and get my yearly echo done on my heart. The test went by with no issues which is great but the doctor doing the echo was interesting. He made small talk for a bit and found out the town that I used to go to school in and wondered how often I go up there. Then he seemed really interested in my EDS and specifically the type of pain that I had, what areas, what treatments I have tried and on and on. Near the end he goes to write something down and then hands me a post-it note with his name and phone number on it and asks that the next time I am in the other town that I give him a call because he would be very interested in seeing if we could get my pain under control! I was absolutely stunned as was my mom. Very greatfull as well that he has taken this interest and actually wants to work WITH me and tackle the chronic pain in my body! When we got home later I, of course, googled him and found out that he is at a clinic called natural drugs & accupuncture therapy.
After the appointment for the echo it was off to the hospital to get xrays done on my shoulder. Thankfully it was not that much of a wait and I was back getting them done in no time. I go in and they ask whay are you here (injured shoulder) and underlying conditions (EDS) and when it happened (sunday). The one lady then goes to line me up but couldn't get one shot so the other lady had to come out to do it. However, this lady was NOT gentle with my shoulder and dug her fingers in all around the front of my shoulder because my collar bone was not 'right'. This lead me to remember that a few years ago when I got my first cortisone shot in that shoulder my rheumy remarked that I had really strange collar bones and that they were hard to 'pin down'. They also did a shot that just about had me in tears which really really sucked! Thankfully I had a few pain pills in my purse that I was able to take right after before the pain set in really badly!
Mom was getting concerned with my shoulder so we tried to make a sling for it that didn't work that well so my mom decided to call my brother as he had shoulder surgery about two months ago (long long story!). He brought the sling over and said I could have it as he didn't need it anymore. He asked me if I dislocated it and I kinda laughed and said no, I do that every couple of days. He had a look of pure shock on his face and I think it kinda is starting to really realize just how bad the EDS can be. I have used the sling a few times just to make it so I can't use my right arm. It is very hard not to as my bad wrist is my left one so I can do most things strictly right handed but not visa versa. The sling also takes a bit of the pressure off of the shoulder but I still can't just 'rest' my shoulder. I can not 'release' the muscles to rest it. I can't do that with any of my joints anymore as I have to always have control or they will go out. Strange thing is that my shoulder hurts the most when I am lying down (which I have read is indicative of a slap tear but I dont know).
The nurse at my GP's office told us to call on tuesday to see if the xrays showed anything (most likely not, they generally dont show up on xrays) and to go from there. Unfortantly my GP is out of the office for two weeks so not sure what the next step will be. Just hoping I dont have to go to the ER to get a referal to an OS quicker as I despise two out of the five or six OS's in this town. One of which just told me a month ago that the only thing wrong was tendonitis!
Monday, April 2, 2012
Journey to Becoming a Zebra - The Facts
This list covers everything that has gone on since the day I got my Ehlers Danlos Syndrome diagnosed. I am probably missing a bunch of things but these are what I have been able to remember just by memory.
Doctors:
Doctors:
- 6 Orthopedic Surgeons
- 5 Physiotherapists
- 3 Rheumatologists
- 3 Dentists (2 were Oral Surgeons)
- 2 Pain Clinics
- 2 Cardiologists (and one is also my internist and gastroenterologist)
- 2 Neurologists
- 1 Allergist
- 1 Dermatologist
- 1 Podiatrist
- 1 Geneticist
- 8 Echocardigrams
- 8 MRI's (that I have remembered)
- 5 Cortisone Injections (1 right knee, 4 right shoulder)
- 4 Holter Monitors
- 4 Dental Surgeries (1 widsom tooth extraction, 1 molar extraction & 2 fillings)
- 3 Bone Scans
- 3 Dexa Scans
- 1 CT Scan (right knee)
- 1 Joint Ultrasounds (right knee)
- Numerous - > X-Rays, EKG's and Bloodwork
- 8 Breakthrough Pain
- 5 NSAIDS
- 4 Off Label Uses
- 3 Long Acting
- 3 Anti-Depressants
- 3 Beta Blockers
- 3 Topical Pain Killers
- 2 Migraine Prevention
- 1 Stomach
- 1 Osteoporosis
- Numerous -> Vitamins and OTC (Over The Counter) Medications
- Other non- EDS related medications (anti-biotics etc)
- Dislocations - Knees (both), Wrists (both), Thumbs (both), Elbows (right) & Shoulder (right)
- Tendonitis - Ankle (left), Knees (both), Wrists (both) & Shoulders (right)
- Bursitits - Ankle (left) & Shoulder (right)
- Osteoarthritis - Knee (right) & Shoulder (right) (confirmed)
- Carpel Tunnel - Both Wrists
- Degenerations - Shoulder, Neck & Back
- Bone Spur - Neck
- Disc Herniation - C5-ish
- Stenosis - Cervical Region
- Reverse Lordis - Lumbar Region
- Ganglion Cyst - Ankle (left)
- Physio - Ankle (left), Knees (both, pre & post-op), Wrists (both) & All Body Assesment
- Bracing - Ankle (left), Knees (right), Wrists (both) & Thumb (both)
- Ultrasound Therapy - Same as Physio
- TENS Therapy - Same as Physio
- Contrast Baths - Wrists (both) & Thumbs (both)
- Accupuncture - Knee (right)
- Accupressure
- Massage Therapy
- Hydrotherapy
- Orthotics
- Chronic Pain
- Chronic Fatigue Syndrome
- Fibromyalgia
- Depression
- Anemia - Iron & B12
- Severe Vitamin D Deficiency
- Sinus Tachycardia / Possible Mitral Valve Prolapse
- Local Anesthetic Allergy (and they do not work)
- Sedation Does Not Take
- Tylenol & Asprine Sensativity / Latex Sensativity
- Severe Chronic Headaches
- Fallen Arches / Flat Foot
- Autonomic Dysfunction / POTS / Dysautonomia
- Osteopenia / Osteoporosis
- Probable Autoimmune Disorder
- Gastroparesis / Gastritis / GERD & Bile Reflux
- Osteoarthritis
Tuesday, February 28, 2012
Good doctors appointment!
Last week I had a very surprising doctor's appointment. Everything went well, we found something that when corrected most likely will make a great improvement, and I was able to check almost everything off my list (and the one not crossed off was addressed). So here is what went on:
1) Rheumy I hated from a few months ago had never sent anything at all regarding our appointment. Probably because he has disappeared. Literally disappeared! The College of Physicans and Surgeons has no clue where he is, his website has been taken down that the dr who shared a building with him has no clue where he has gone and rumours are he had no clue he was even leaving town. The local newspaper even did a full story on it and complaints are being lodged against him. When I told my GP (Dr. B) what he had told me about my weight and acrobatic activities he just shock his head and called him an idiot. We have never ever heard my dr bad mouth another one, and we have been going to him for 35+ years!!
2) About the scope and the results from that. Among what was foun was non-ulcer dyspepsia (upset stomach or indigestion not from an ulcer); Atypical dysphagia (difficulty swallowing for an unknown reason); gastritis (inflamation of the stomach lining); no strictures were found (nothing physical causing the swallowing problems); acid and bile reflux (we knew of the acid before hand but not the bile); delayed gastric emptying (gasteroparesis - just as the name says, food stays in my stomach too long) and that she believes that my swallowing problems are from a combination of autonomic dysfunction flares coupled with oesophegus spasms. Good news was nothing was biopsied, no 'bad germs' were found and basically nothing bad like tumours or bleeding. She suggests that I try the medication called domperidone in the report. Dr B didn't think that it would make any difference but when I looked it up later at home I realize that she is wanting to try it because of the delayed gastric emptying and not the GERD or swallowing that I assume he assumed. I did call her office to make a follow-up but because I go for all my annual cardiac testing in april and have a follow-up in may, the office said she prefers to wait until all the tests are in before a follow-up is made. I tried to tell them that these tests were for my stomach and the other tests are for my heart and totally unrelated so the office told me that they would talk to my dr and see if she wanted me in. Still waiting for that.
3) I needed my pain meds changed which was actually pretty easy. He was happy to get me off of the breakthrough med that I had been on as he didn't like it. He even asked who perscribed it last and I had to tell him that he did. I dont think he was completely convinced that rotating the meds helps so I don't build tolerance, but he did change them around for me.
4) Obviously even if I did like the last rheumy, he is no long around to go to. Dr. B says he has heard through the hospital that a new rheumy will be in town within the next few months so he wants me to just wait for now and get into this new doctor. As things are pretty stable (except for one joint - more later) and Dr. B is willing to handle my medications, I am okay with this.
5) My shoulder has been really bothering me lately. If my old rheumy was still around he would have done a cortisone shot months ago! When I asked Dr. B about this he asked where I had had the injections (two in the AC joint, one for tendonitis, one for bursitis) but says he does not want me to have any more cortisone in ANY joint becasue of the osteoporosis. He feels that the risk of more damage is too high to chance a few months of relief. Because of this he is sending me to an orthapedic surgeon in town. I dont have a appointment date but I will keep this blog updated.
6) Finally the last item was the bloodwork I had done the week before. All the autoimmune came back okay this time so he is thinking that it whatever I have is dormant right now and that when I get into the rheumy he wants this investigated further. The C-reactive protein is still quite elevated but we do know that lately with my joints being more painful that there is some more inflamation going on. Again, it's something to keep an eye on, but nothing serious at this point. However, there was one test that completely scared him, it actually scared my doctor!! My vitamin D levels are very worringly low. I am very deficient in Vitamin D for some reason. This, coupled with the osteoporosis are pretty dangerous. However, he has never seen levels this low so itsn't too sure what to do to treat it. He just had me get some vitamin d drops and take at least 3 times the daily dose. I am hopeful that this is the reason for the problems I have been having in my legs. They have been so painful and weak. I avoid stairs at all costs and have been having a lot of restless leg symptoms again. I have most of the symptoms so am keeping my fingers crossed that when we get the D levels back to normal, my legs wont be so bad in certain ways. After the appointment I asked the secretary for copies of the report (scope) and bloodwork and when she looked at it she was shocked too and looked at me and made a note that it was a good thing I had thought to test it as no doctor has ever suggested it tested.
7) Just as we were about to leave mom mentions that she thought we actually had something to show him this time as my wrist had been sliding in and out all morning. Then we were absolutly shocked!!! He says "I dont need to see that, we know that she dislocates as that is what goes along with the EDS, no one is doubting that"!! Well, a few years ago, HE did actually doubt that. Shows the ground we have gained with him and that he is finally starting to fully get it!
The only thing that we did not get discussed was a medic alert bracelet. We did mention the issue I had with the sedatives and my past issues with local anesthetics so they do know about it, we just didnt ask about whether I should get a medic alert bracelet. However both my parents feel that it would definitly be a good idea to have, not only for that but for many other issues. I have asked around and looked into it and now all I have to do is figure out which bracelet I want.
1) Rheumy I hated from a few months ago had never sent anything at all regarding our appointment. Probably because he has disappeared. Literally disappeared! The College of Physicans and Surgeons has no clue where he is, his website has been taken down that the dr who shared a building with him has no clue where he has gone and rumours are he had no clue he was even leaving town. The local newspaper even did a full story on it and complaints are being lodged against him. When I told my GP (Dr. B) what he had told me about my weight and acrobatic activities he just shock his head and called him an idiot. We have never ever heard my dr bad mouth another one, and we have been going to him for 35+ years!!
2) About the scope and the results from that. Among what was foun was non-ulcer dyspepsia (upset stomach or indigestion not from an ulcer); Atypical dysphagia (difficulty swallowing for an unknown reason); gastritis (inflamation of the stomach lining); no strictures were found (nothing physical causing the swallowing problems); acid and bile reflux (we knew of the acid before hand but not the bile); delayed gastric emptying (gasteroparesis - just as the name says, food stays in my stomach too long) and that she believes that my swallowing problems are from a combination of autonomic dysfunction flares coupled with oesophegus spasms. Good news was nothing was biopsied, no 'bad germs' were found and basically nothing bad like tumours or bleeding. She suggests that I try the medication called domperidone in the report. Dr B didn't think that it would make any difference but when I looked it up later at home I realize that she is wanting to try it because of the delayed gastric emptying and not the GERD or swallowing that I assume he assumed. I did call her office to make a follow-up but because I go for all my annual cardiac testing in april and have a follow-up in may, the office said she prefers to wait until all the tests are in before a follow-up is made. I tried to tell them that these tests were for my stomach and the other tests are for my heart and totally unrelated so the office told me that they would talk to my dr and see if she wanted me in. Still waiting for that.
3) I needed my pain meds changed which was actually pretty easy. He was happy to get me off of the breakthrough med that I had been on as he didn't like it. He even asked who perscribed it last and I had to tell him that he did. I dont think he was completely convinced that rotating the meds helps so I don't build tolerance, but he did change them around for me.
4) Obviously even if I did like the last rheumy, he is no long around to go to. Dr. B says he has heard through the hospital that a new rheumy will be in town within the next few months so he wants me to just wait for now and get into this new doctor. As things are pretty stable (except for one joint - more later) and Dr. B is willing to handle my medications, I am okay with this.
5) My shoulder has been really bothering me lately. If my old rheumy was still around he would have done a cortisone shot months ago! When I asked Dr. B about this he asked where I had had the injections (two in the AC joint, one for tendonitis, one for bursitis) but says he does not want me to have any more cortisone in ANY joint becasue of the osteoporosis. He feels that the risk of more damage is too high to chance a few months of relief. Because of this he is sending me to an orthapedic surgeon in town. I dont have a appointment date but I will keep this blog updated.
6) Finally the last item was the bloodwork I had done the week before. All the autoimmune came back okay this time so he is thinking that it whatever I have is dormant right now and that when I get into the rheumy he wants this investigated further. The C-reactive protein is still quite elevated but we do know that lately with my joints being more painful that there is some more inflamation going on. Again, it's something to keep an eye on, but nothing serious at this point. However, there was one test that completely scared him, it actually scared my doctor!! My vitamin D levels are very worringly low. I am very deficient in Vitamin D for some reason. This, coupled with the osteoporosis are pretty dangerous. However, he has never seen levels this low so itsn't too sure what to do to treat it. He just had me get some vitamin d drops and take at least 3 times the daily dose. I am hopeful that this is the reason for the problems I have been having in my legs. They have been so painful and weak. I avoid stairs at all costs and have been having a lot of restless leg symptoms again. I have most of the symptoms so am keeping my fingers crossed that when we get the D levels back to normal, my legs wont be so bad in certain ways. After the appointment I asked the secretary for copies of the report (scope) and bloodwork and when she looked at it she was shocked too and looked at me and made a note that it was a good thing I had thought to test it as no doctor has ever suggested it tested.
7) Just as we were about to leave mom mentions that she thought we actually had something to show him this time as my wrist had been sliding in and out all morning. Then we were absolutly shocked!!! He says "I dont need to see that, we know that she dislocates as that is what goes along with the EDS, no one is doubting that"!! Well, a few years ago, HE did actually doubt that. Shows the ground we have gained with him and that he is finally starting to fully get it!
The only thing that we did not get discussed was a medic alert bracelet. We did mention the issue I had with the sedatives and my past issues with local anesthetics so they do know about it, we just didnt ask about whether I should get a medic alert bracelet. However both my parents feel that it would definitly be a good idea to have, not only for that but for many other issues. I have asked around and looked into it and now all I have to do is figure out which bracelet I want.
Tuesday, February 21, 2012
Avoiding disaster! (and the normal blog update)
First - I have changed my mind and decided that my 100th post is actually going to be my journey to eds-ville as I realized that since I have moved to this blog (did post before on a different blog site) I haven't really delved into anything in my past. I will soon put up links though from my followers so if you haven't replied or emailed please do so if you want your link posted. If you are a follower who has a blog, I don't feel comfortable just automatically putting up your link and would like to have your permission before I link you. I know that seems kind of odd as you can just click on a persons name, but that is how I feel more cofortable in doing things (it's the computer programmer in me lol).
Things have been pretty good around here for the most part. No big issues or anything like that which is nice for a change. Also it seems like we avoided what could have been a MAJOR problem! My brother's fiance's daughter (I guess my step-neice? call her 'J') is sick. My nephew was at their house for about 30 minutes last tuesday and also had a visitation at their place on sunday for about 4 hours. Thankfully, for some reason, J was not at home while K was there on sunday. I say thankfully because we got a frantic call sunday night saying that they had just got home from the ER with J and she was diagnosed with........ Scarlet Fever!!! Thankfully she isn't too sick and they gave her antibiotics and had her fever gone by the time they left. Apparently it is not a serious disease anymore and is in the same range as strep throat which we found out is going around our community (my family and my brother's family live in the same small town of about 7000 people, but K and J go to different schools). As we read that it can take between 12 - 72 hours for signs to start showing and since K was home from school on friday with a sore thorat and no rash or fever has appeared on K (or me!) we seem to have avoided it completely! No visits will be done though until she is completly off of all antibiotics as my immune system is so low and I can get real sick, they know that we have to take more precautions than most (like no visits here during any chicken pox outbreaks in town).
Medically I have been having a lot of problems with two of my joints. My right shoulder is not feeling stable at all and in quite a bit of pain, but nothing compared to my right hip. I can not sit or lay down in a comfortable position. Late at night when I can't sleep because of it, it is bad enough that I get tears in my eyes. I have been doing breakthrough meds a lot more regularly that normal but thankfully have a GP appointment on thursday so I can get my medications switched over as it seems I am reaching my tolerance levels (I usually try not to change long-acting and breakthrough meds at the same time but I don't think it can be helped this time). Unfortnatly, as he is just my GP and I have no rheumy or joint doctor, nothing will be done unless I can convince him to do some scans or think about cortisone shots in one (or both) areas.
I did get bloodwork taken last week which was absolutely shocking. For the first time in many many years it only took one nurse, one stick, in my left elbow (normally only hands work) and no digging! They know me there and groaned when they saw how many vials they would need (did a complete autoimmune work up, even the tests that insurance doesnt cover!, my iron, B12 and vitamin D levels - total of 6 vials!). Originally it was only going to be for the autoimmune stuff but on the day I went to the office to ask for the other three tests and since I didn't know I decided to fast that night just in case. The lady took me into the room, joking away with me and my mom and got me settled in and the vials out. Now, for those who dont know me generally I have to have a heat pack on my hand before hand, butterfly needle into a vein on my hand between my fingers, two nurses basically using gravity to get the blood out, using a syringe because changing vials tends to make the vein collapse, lots of painful digging and anywhere from 1 - 3 attempts to get the blood. She has even told me that I am to always tell her to stick to my hand and not attempt the arm because she always feels a good vein but after digging she loses it and ends up going to my hand. So, like normal she starts feeling around and checks my arm and says she feels a really big vein there. After a few words exchanged I told her she could try the arm if she felt confident in it, which she did. She took the needle, stuck it straight in and as I was waiting for the digging to start I hear a noise. I opened my eyes and see that she wasn't digging because she was changing the vial to fill up # 2!! She got all six vials done in half the time it usually takes to just get a half full syringe! With no pain (and no bruising!). We were all very very shocked at how well it worked and mom joked that we should head right to the tattoo parlor and get a bullseye on it!!
Well I have a doctor's appointment on thursday where we will be discussing a LOT of different topics so I will post this weekend with what goes on.
Things have been pretty good around here for the most part. No big issues or anything like that which is nice for a change. Also it seems like we avoided what could have been a MAJOR problem! My brother's fiance's daughter (I guess my step-neice? call her 'J') is sick. My nephew was at their house for about 30 minutes last tuesday and also had a visitation at their place on sunday for about 4 hours. Thankfully, for some reason, J was not at home while K was there on sunday. I say thankfully because we got a frantic call sunday night saying that they had just got home from the ER with J and she was diagnosed with........ Scarlet Fever!!! Thankfully she isn't too sick and they gave her antibiotics and had her fever gone by the time they left. Apparently it is not a serious disease anymore and is in the same range as strep throat which we found out is going around our community (my family and my brother's family live in the same small town of about 7000 people, but K and J go to different schools). As we read that it can take between 12 - 72 hours for signs to start showing and since K was home from school on friday with a sore thorat and no rash or fever has appeared on K (or me!) we seem to have avoided it completely! No visits will be done though until she is completly off of all antibiotics as my immune system is so low and I can get real sick, they know that we have to take more precautions than most (like no visits here during any chicken pox outbreaks in town).
Medically I have been having a lot of problems with two of my joints. My right shoulder is not feeling stable at all and in quite a bit of pain, but nothing compared to my right hip. I can not sit or lay down in a comfortable position. Late at night when I can't sleep because of it, it is bad enough that I get tears in my eyes. I have been doing breakthrough meds a lot more regularly that normal but thankfully have a GP appointment on thursday so I can get my medications switched over as it seems I am reaching my tolerance levels (I usually try not to change long-acting and breakthrough meds at the same time but I don't think it can be helped this time). Unfortnatly, as he is just my GP and I have no rheumy or joint doctor, nothing will be done unless I can convince him to do some scans or think about cortisone shots in one (or both) areas.
I did get bloodwork taken last week which was absolutely shocking. For the first time in many many years it only took one nurse, one stick, in my left elbow (normally only hands work) and no digging! They know me there and groaned when they saw how many vials they would need (did a complete autoimmune work up, even the tests that insurance doesnt cover!, my iron, B12 and vitamin D levels - total of 6 vials!). Originally it was only going to be for the autoimmune stuff but on the day I went to the office to ask for the other three tests and since I didn't know I decided to fast that night just in case. The lady took me into the room, joking away with me and my mom and got me settled in and the vials out. Now, for those who dont know me generally I have to have a heat pack on my hand before hand, butterfly needle into a vein on my hand between my fingers, two nurses basically using gravity to get the blood out, using a syringe because changing vials tends to make the vein collapse, lots of painful digging and anywhere from 1 - 3 attempts to get the blood. She has even told me that I am to always tell her to stick to my hand and not attempt the arm because she always feels a good vein but after digging she loses it and ends up going to my hand. So, like normal she starts feeling around and checks my arm and says she feels a really big vein there. After a few words exchanged I told her she could try the arm if she felt confident in it, which she did. She took the needle, stuck it straight in and as I was waiting for the digging to start I hear a noise. I opened my eyes and see that she wasn't digging because she was changing the vial to fill up # 2!! She got all six vials done in half the time it usually takes to just get a half full syringe! With no pain (and no bruising!). We were all very very shocked at how well it worked and mom joked that we should head right to the tattoo parlor and get a bullseye on it!!
Well I have a doctor's appointment on thursday where we will be discussing a LOT of different topics so I will post this weekend with what goes on.
Monday, February 6, 2012
Rough week
First off, to my two new followers, welcome to my blog and I hope I don't bore you to death lol. I don't update my blog near as often as I should and hoping to get back into blogging regulary again. Thanks to all my other followers too! I am nearing my 100th post and was wondering if each of you could either e-mail me (if you know the email) or comment and tell me how you found the blog, why you are interested in it (do you have eds? family member? just random searchig?) and most importantly the link to your blog if you have it. I haven't put links along the side bar yet because I can't find out a layout I like for it so going to create a seperate page with info of my followers if you let me. If you have EDS you know that we need to stick together throughout all that we go through.
Secondly, why I haven't posted since the scope. Thankfully my dentist appointment got cancelled (wasn't looking foward to someone working with stuff in my mouth after what happened!), sadly though it was because I ended up with an infected throat as well as a build up of blood behind my left ear drum. I went to my GP first becasue I figured the returning throat pain was more likely to be a cold issue (especially as K missed school that day because he had a sore throat and cold) and didn't want to bother my specialist. When I called and explained what was going on the receptionist told me to get to the office asap to get it looked at. My GP ended up giving me a new anti-biotic (Biaxen - I never want to take it again!!!) and we breifly talked. I asked if I could get a blood requeistion form done up so we could have the results during a follow-up appointment. He asked why and I told him what the internist and rheumy said about the autoimmune and he just shock his head and said that they were not a fluke and that there was definitly something auto-immune going on, he just does not know what it is. He wrote up for a lot more tests than last time, any test that could point to autoimmune. Personally I am thinking it may be one of three - Sjogrens, Rheumatoid Arthritis or Lupus. I don't know what would actually happen if / when I am diagnosed as the medications for the auto-immune and what I need to take for the EDS don't seem to mesh well. My GP did write to send copies of the lab work to the rheumy I saw and I just said that I wouldn't be going back to him but he wanted to keep him in the loop. As I felt like crap and knew that we were going to discuss it at the next appointment I just let it slide. As of now I have one dose of anti-biotics left and have to go and get the bloodwork done tomorrow becasue my appointment with my GP is for the 13th. As a side note - I have not contacted my gastro / internist / cardiologist yet regarding the scope. Going to get the reports from her from my GP and go from there.
Secondly, why I haven't posted since the scope. Thankfully my dentist appointment got cancelled (wasn't looking foward to someone working with stuff in my mouth after what happened!), sadly though it was because I ended up with an infected throat as well as a build up of blood behind my left ear drum. I went to my GP first becasue I figured the returning throat pain was more likely to be a cold issue (especially as K missed school that day because he had a sore throat and cold) and didn't want to bother my specialist. When I called and explained what was going on the receptionist told me to get to the office asap to get it looked at. My GP ended up giving me a new anti-biotic (Biaxen - I never want to take it again!!!) and we breifly talked. I asked if I could get a blood requeistion form done up so we could have the results during a follow-up appointment. He asked why and I told him what the internist and rheumy said about the autoimmune and he just shock his head and said that they were not a fluke and that there was definitly something auto-immune going on, he just does not know what it is. He wrote up for a lot more tests than last time, any test that could point to autoimmune. Personally I am thinking it may be one of three - Sjogrens, Rheumatoid Arthritis or Lupus. I don't know what would actually happen if / when I am diagnosed as the medications for the auto-immune and what I need to take for the EDS don't seem to mesh well. My GP did write to send copies of the lab work to the rheumy I saw and I just said that I wouldn't be going back to him but he wanted to keep him in the loop. As I felt like crap and knew that we were going to discuss it at the next appointment I just let it slide. As of now I have one dose of anti-biotics left and have to go and get the bloodwork done tomorrow becasue my appointment with my GP is for the 13th. As a side note - I have not contacted my gastro / internist / cardiologist yet regarding the scope. Going to get the reports from her from my GP and go from there.
Friday, January 27, 2012
Horrible experience!!!
***** I am going to apologize in advance because this is going to end up being a LONG post. There were just so much going on and so many emotions and I am still trying to get over the 'trauma' (my mom's words that the nurses told her) that it still feels kinda all jumbled up and still trying to make sense of some of it.*****
That was one of the worst days of my life, and I am not being overdramatic in any way!!! After being reassured by everyone (well except for one person who was great to tell me that her mom would rather having her hip broke than having a scope again!) that it was no big deal, I wouldnt remember anything and would be perfectly fine afterward. Well surprise surprise I was the "1 in 100" as my doctor would later tell me. Well I better start at the beginning so this actually makes sense.
Background - As I wrote before, I had a barium swallow done before Christmas that showed that there was 'something' in my stomach that they could not identify. Because of this it was highly recommended that I have a gastroscopy to see if those were left over food particles or some type of polyp. When my GP read this, he told us that I should ask my internist / cardiologist (Dr. C) about it because she is also a gastroenterologist (which was confusing but I wont go into it here). When I went to see her next she quickly dismissed the report and said that I had gastroparesis (still can't remember how to spell it!) which fit wiht many of my issues and said the swallowing problems were probable from my 'extreme acid reflux'. However, after a bit of discussion she agreed to do the gastroscopy and we scheduled it. There were a few extra notes that she wanted - like we decided for me to NOT take my beta blocker the night before, I was not to have solids for supper or any time after (you can usually eat a normal supper, then liquids til midnight then nothing else - I had liquids from supper to midnight), obviously the no locals and that I was to 'get a good nurse' for IV.
Night Before - I slept in that day and then got up later and had a treat (figured I wouldnt want anything for a few days so got in one of my favourite treats lol) around 2ish. Wasn't too hungry so the next thing I had was some beef broth around 6ish. Had some watermelon Jello (amazing!!! If you like watermelon you have to try this!) around 8 and just flavoured water for the rest of the night. Went to bed 'early' around 11 so I could get some decent sleep, which of course did not happen! I just could not get to sleep and didnt manage to fall asleep until close to 2am! Then I woke up from about 4:30 til 5:15 before going back to sleep and finally waking up at 7am (alarm was set for 7:45 but I couldnt get back to sleep). I had everything I needed packed and clothes laid out from the night before so just played on my laptop until it was time to go.
At the Hospital (Pre-scope area) - I was supposed to be at the hospital for 8:45 so we left around 8:10 and ended up getting there at 8:30ish. Went in and got registered and were directed up to the third floor to the day surgery unit. Registered there and was eventually taken back to the endoscope unit and given a cubicle and told to get changed (I was disappointed that I was not allowed to keep my PJ pants on, had to get in a gown, could keep underwear on and my socks lol). Once I was dressed and settled in my bed a nurse (call her Prep Nurse) came in and went over my forms and checked about all my meds and conditions and stuff like that. She then took my vitals but kept my BP cuff on as they keep it on during the procedure. She got everything out for the IV and mentioned that they were going to keep the saline going a bit faster than normal because Dr. C suggested it (I assume because I had no liquids which could lead to autonomic issues). I then asked to go to the bathroom and went and the BP cuff moved around so I told Prep Nurse this once back in bed and she said it didn't matter (???).
I told Prep Nurse that I was a hard IV start and she just kinda looked at me. I told her where they usually get bloodwork and IV's so she said she would try that spot first. As she is getting prepped another nurse called through the curtain that they had a student on the ward to learn about IV's and that maybe she could start on me. Prep Nurse immediatly said that was not a good idea as I was not an easy patient and she wasn't even sure she could get it. The other nurse must of thought she was being funny because she then goes that maybe the student should come in and watch 'the amazing job' that Prep Nurse does. Prep Nurse kept saying no that it wasn't a good idea and the other nurse finally gave up. Prep Nurse apologized as she had to keep 'flicking' (tortureing was her word actually) the area to try and get the vein to come up and thought she was pretty confident that she could get this start. I closed my eyes, clenched my fist (thats what I was told) and tried my best to relax. After some digging I hear her move and ask if it is in. She tells me she HAD it, notice she said HAD and not have. I relax and could see she was visably frustrated / upset and she kept apologizing for hurting me. She then said that she would not try again and that she was going to get some one of the nurses from the back to come out and do it. So Prep Nurse left and a few minutes later and Unit Nurse came to look at me.
Unit Nurse kept reassuring me that if she didn't feel confident that she would not even attempt the IV start (I didn't ask what would happen after that). After a bit of her looking around and what not she said she thought she saw a good vein. As I noticed her feeling around my wrist / thumb area I got real nervous and asked if there wasn't somewhere else and she finally just said that if I was that nervous about it she wasnt going to attempt it. That is when I told her that while at university I had a blood draw from there and the nurse hit the nerve and I was in a splint for a few weeks. Unit Nurse than assured me that she would not try there. She then was confident that she found a vein in my elbow area and asked if it was okay for her to go there. I said yes (what else was I going to say???) and after some poking and digging around she got the IV in. Because it was such a hard start she taped the crap out of it so it wouldn't move. Unit Nurse then proceeds to tell me that I was over the worst of it now. I said as long as I am knocked out during the procedure I will be fine. Unit Nurse then proceeds to tell me that they don't knock you out persay but sedate you and give you medications so that you don't remember anything. Unit Nurse then proceds to tell me that I am very lucky because they actually had an anesthesiologist on the floor that day and he gives the good meds (Propofol) which are even better than the sedations and that I wont rememer a thing. She tells me that she has had two scopes and dosen't remember a thing. My next nurse (Jody) then came and introduced herself to mom and I and said that they were ready for me and she was going to take me to the room. I said good bye to mom, Prep Nurse told her where she could wait and we were off.
Procedure Room (Pre-Scope) - The wheel me into this small room and I see that Dr. C is in there. I mention to Jody that my BP cuff had come off and she thanked me for telling her and as they had some more prep stuff to do she just took it off for the moment while everything else was done. I look over to the desk area and see that Dr. C is talking to a man in blue scrubs that I assume was the anesthesiologist and they were talking about the cases that they were doing that day. Jody gets me ready by putting electrodes on my chest and getting me to sign another form (to approve the dilation and biopsys) and Dr. C asks if I was noticing any differences with the new beta blockers. I told her we could really see a difference which she was surprised about. I then mention to her that I forgot to mention to her that I have blood in my stools and wondered if she could see anything that day. She tells me that if the blood was from the stomach that I wouldn't be able to see anything and that we would probably have to do a colonoscopy in the future. Jody then gets the BP cuff back on, puts a nasal cannula with oxygen on, has me turn on my side and get positioned where I needed to go. She then proceeds to tell me that she is going to spray the back of my throat to which I quickly replied "NO" and she nodded and thanked for reminding her. I tell her than what my dentist usually does (removes all locals before I get in the OR) Dr. C tells someone (the nurse taking report I assume) that she is going to give 4mg of versed and 75mg of Fentanyl and asks the other nurse to keep an close eye on the IV because she is concerned that amout going in through a small needle could make the liquid pour out under the skin. Jody puts on the mouth guard and straps it on while this is happening. I see Dr. C coming close with the scope and then....
During Scope - Yes I said during the scope. I didnt wake up for the actually swallowing portion but I did wake up in time to feel the scope going down my throat. I could feel it moving around and hear Dr. C saying what she was looking at and then she started to do the dilation. It was during this time that I completely panicked. The nurses had to hold me down and one nurse kept telling me to relax (!!!) and the other kept telling me to breath through my nose. Once the dilation was done I felt her bring the scope out and tell me that I was okay and it was over. I dont remember the next few seconds (just having the electrodes and mouth guard removed) but then I remember Jody moving me to the recovery bays.
Post-Scope Recovery Bay - I didnt even realize I was crying but Jody kept telling me it was okay and it was all over. She kept hitting the button to take my BP quite often and I was never left in the bay without a nurse (the other bays I could see nurses coming and going every like 5 minutes). Jody handed me kleenex and kept trying to get me to turn over on my side but I wanted on my back. She told me I would have to burp but I guess I was crying too much for that sensation. A new nurse, Recovery Nurse, came in at this point and Jody went back to the procedure rooms I guess. Recovery Nurse then said that the IV was very agitated so she quickly removed it thankfully. Dr. C came in and asked if I was okay. I don't quite remember what I said (apparently I was in shock) but I told her I was awake, it hurt badly and that I was told the anesthesiologist was going to give me medications. She looked confused and told me that she never told me that and it was never part of the plan. That upset me even more! She kept telling me it only took two minutes for the entire thing and it was all over and done. Then she comes out with "When we do the colonoscopy we will do it under a general anesthetic"!! I couldn't believe her!! Like that was my biggest concern at the moment and like I would agree to any type of procedure after what I just went through! She mentioned that she thought that my tachycardia is causing my problems. She thinks that the heart spasming is causing the esophagus to spasm (or something like that, not 100% sure). She then left and I just kept repeating that it hurt and I felt the entire thing and I just wanted to go home. Someone went and got my mom at that point and she walked in to me crying and so upset and assumed that they had mistakenly given me the local anesthetic and said she couldnt figure out why I was so upset. She said to the me then "Well we will just have to see what happens", Recovery Nurse kinda said something along the lines of it was done and that is when I told mom that I was awake through the entire thing and that I just wanted to go home. That was my only thing - I wanted to leave that place and just go home! Unit Nurse than comes in the room and apparently looked very upset and kept apologizing. Apparently she got sidetracked and never told Dr. C that she said she would get the anesthesiologist to give the propofol. She felt horrible about it and went to Dr. C to tell her what had happened. I think every nurse on the unit came in and out of the room at some point to apologize to mom (and me but I wouldnt look at them) and check on me. Dr C then came back in and talked to mom for a bit and just kept telling me it was only two minutes (like that mattered) and that she gave me the same dosages of meds as they normally do for the colonoscopy and that the man in the bay beside me was still sleeping for him and he went before me. She just said that I unfortunatly was that 1 in 100 person who didn't react properly to the medications. She didn't know what else to say but to apologize again and that she would leave it up to us to call and make any other appointments and would understand if I decided not to see her again (which is so helpful as she is not only my gastro doc but my internist and my cardiologist as well!). After she left Unit Nurse came in once again to apologise and mom asked if they at least found anything. Unit Nurse looked it up and said they found out that I had gastritis and some sort of reflux disease similar to GERD (mom cant remember what she said) and that no strictures were found and that they did do the dilation. She didn't mention anything about a biopsy so we aren't sure about that. After I calmed down enough and my vitals were normal the nurse told mom that she could take me home. They gave us some discharge papers (food and drink as tolerated) and sheets about gastritis and GERD and left. I got dressed quickly, and still crying, we left the hospital.
Immediatly Post - Scope at home - Mom asked if I wanted to get an ice cap on the way home but I didnt want anything, just wanted to get home. We drove home, me still upset and crying and asking questions and telling her (again) what happened. We got home and mom just told me to take a pain killer and go lie down for a while. I had some chocolate milk to take my morning meds (as I had nothing on my stomach and thought that might be bad with my meds) and then wanted soemthing more to drink so went upstairs and could hear mom talking to my dad in her bedroom (so I couldnt hear) about how things went and how I was so upset. I got some flavoured water (carbonated felt good) and went back to bed to try and sleep for a bit and did eventually fall asleep.
That Afternoon & Night - I got up shortly after Kyler got home and curled up on the couch. I showed him my IV wounds (hand swelled up and brusied, elbow did surprisingly nothing, couldnt even see the entry point!) and he asked what they did and I told him that basically they put a balloon in my throat and blew it up to try and make me be able to swallow better. He then asked 'What kind of doctors are they? That is so stupid!" which made me laugh. Mom had to go out and get a few things so I went with her. We didn't know how sore my throat would be so didn't get too much stuff but after having it done I knew it was going to hurt. Went out and got some popsicles and yogurt and went home. I had spiral macaroni and cheese (they are thinner and smaller) for supper and then some watermelon jello after that. When we sat down to watch American Idol mom was surprised and told me to look at my arm. I asked at what and she said exactly. I had no reaction at all to the tape from the IV!! No read marks, no rash, no tearing nothing! Something that my body produced when I panicked counteracted what every produces the rash apparently. I was so tired that mom 'sent' me to bed at 10pm.
Following Day - I slept was awake and slept and was awake and slept and got up around 1pm. I felt like I had been hit by a truck!!! Everything hurt so bad! My throat hurt at the top (like when you get a sore throat) and further down where the did the dilation; my right arm hurt from where I was tensed up because of the IV and just everything hurt. I came upstairs and took some pain meds and told mom and she said it was no wonder I hurt after the trauma I had been through. All afternoon I kept yawning and was just exhausted. At around 4 mom suggested I go down to bed until supper as I looked so tired. I said that I didn't know why I was so tired and she said it was from all the stress. I had spiral mac and cheese for supper again and sucked on some of the milk chocolate werthers and caramelts (they are so creamy it felt nice to swallow it).
As of now (Friday night) I still can not eat solids. I have had mac and cheese every night for supper, sticking with lots of popsicles, jello and werthers. Mom is concerned that it's not the pain that is keeping me from eating more solid types of food but that I am scared to. I dont really know which it is. Just thinking about it still upsets me and I am actually scared and worried about how I am going to react to my dentist appointment next week. Mom keeps telling me that we knew it was going to take me longer than normal to heal from the procedure becasue of the EDS and then now with the physical and emotional trauma it is going to take even longer. She wants me to make an appointment with my GP about getting it in my file that any procedure has to be done under a general anesthetic since locals dont work and apparently sedation doesnt work. She also wants me to get a medic alert bracelet saying that becasue if I was ever in an accident or something and they had to do anything, the sedation wouldnt take and just cause more problems. I will have to bring it up to my doctor as this is now a few items that she wants me to get a medic aleart bracelet becasue of and this one actually does scare me that if I dislocate something badly and they sedate me thinking I wont feel or remember anyhting when actually I will feel and remember it all!
That was one of the worst days of my life, and I am not being overdramatic in any way!!! After being reassured by everyone (well except for one person who was great to tell me that her mom would rather having her hip broke than having a scope again!) that it was no big deal, I wouldnt remember anything and would be perfectly fine afterward. Well surprise surprise I was the "1 in 100" as my doctor would later tell me. Well I better start at the beginning so this actually makes sense.
Background - As I wrote before, I had a barium swallow done before Christmas that showed that there was 'something' in my stomach that they could not identify. Because of this it was highly recommended that I have a gastroscopy to see if those were left over food particles or some type of polyp. When my GP read this, he told us that I should ask my internist / cardiologist (Dr. C) about it because she is also a gastroenterologist (which was confusing but I wont go into it here). When I went to see her next she quickly dismissed the report and said that I had gastroparesis (still can't remember how to spell it!) which fit wiht many of my issues and said the swallowing problems were probable from my 'extreme acid reflux'. However, after a bit of discussion she agreed to do the gastroscopy and we scheduled it. There were a few extra notes that she wanted - like we decided for me to NOT take my beta blocker the night before, I was not to have solids for supper or any time after (you can usually eat a normal supper, then liquids til midnight then nothing else - I had liquids from supper to midnight), obviously the no locals and that I was to 'get a good nurse' for IV.
Night Before - I slept in that day and then got up later and had a treat (figured I wouldnt want anything for a few days so got in one of my favourite treats lol) around 2ish. Wasn't too hungry so the next thing I had was some beef broth around 6ish. Had some watermelon Jello (amazing!!! If you like watermelon you have to try this!) around 8 and just flavoured water for the rest of the night. Went to bed 'early' around 11 so I could get some decent sleep, which of course did not happen! I just could not get to sleep and didnt manage to fall asleep until close to 2am! Then I woke up from about 4:30 til 5:15 before going back to sleep and finally waking up at 7am (alarm was set for 7:45 but I couldnt get back to sleep). I had everything I needed packed and clothes laid out from the night before so just played on my laptop until it was time to go.
At the Hospital (Pre-scope area) - I was supposed to be at the hospital for 8:45 so we left around 8:10 and ended up getting there at 8:30ish. Went in and got registered and were directed up to the third floor to the day surgery unit. Registered there and was eventually taken back to the endoscope unit and given a cubicle and told to get changed (I was disappointed that I was not allowed to keep my PJ pants on, had to get in a gown, could keep underwear on and my socks lol). Once I was dressed and settled in my bed a nurse (call her Prep Nurse) came in and went over my forms and checked about all my meds and conditions and stuff like that. She then took my vitals but kept my BP cuff on as they keep it on during the procedure. She got everything out for the IV and mentioned that they were going to keep the saline going a bit faster than normal because Dr. C suggested it (I assume because I had no liquids which could lead to autonomic issues). I then asked to go to the bathroom and went and the BP cuff moved around so I told Prep Nurse this once back in bed and she said it didn't matter (???).
I told Prep Nurse that I was a hard IV start and she just kinda looked at me. I told her where they usually get bloodwork and IV's so she said she would try that spot first. As she is getting prepped another nurse called through the curtain that they had a student on the ward to learn about IV's and that maybe she could start on me. Prep Nurse immediatly said that was not a good idea as I was not an easy patient and she wasn't even sure she could get it. The other nurse must of thought she was being funny because she then goes that maybe the student should come in and watch 'the amazing job' that Prep Nurse does. Prep Nurse kept saying no that it wasn't a good idea and the other nurse finally gave up. Prep Nurse apologized as she had to keep 'flicking' (tortureing was her word actually) the area to try and get the vein to come up and thought she was pretty confident that she could get this start. I closed my eyes, clenched my fist (thats what I was told) and tried my best to relax. After some digging I hear her move and ask if it is in. She tells me she HAD it, notice she said HAD and not have. I relax and could see she was visably frustrated / upset and she kept apologizing for hurting me. She then said that she would not try again and that she was going to get some one of the nurses from the back to come out and do it. So Prep Nurse left and a few minutes later and Unit Nurse came to look at me.
Unit Nurse kept reassuring me that if she didn't feel confident that she would not even attempt the IV start (I didn't ask what would happen after that). After a bit of her looking around and what not she said she thought she saw a good vein. As I noticed her feeling around my wrist / thumb area I got real nervous and asked if there wasn't somewhere else and she finally just said that if I was that nervous about it she wasnt going to attempt it. That is when I told her that while at university I had a blood draw from there and the nurse hit the nerve and I was in a splint for a few weeks. Unit Nurse than assured me that she would not try there. She then was confident that she found a vein in my elbow area and asked if it was okay for her to go there. I said yes (what else was I going to say???) and after some poking and digging around she got the IV in. Because it was such a hard start she taped the crap out of it so it wouldn't move. Unit Nurse then proceeds to tell me that I was over the worst of it now. I said as long as I am knocked out during the procedure I will be fine. Unit Nurse then proceeds to tell me that they don't knock you out persay but sedate you and give you medications so that you don't remember anything. Unit Nurse then proceds to tell me that I am very lucky because they actually had an anesthesiologist on the floor that day and he gives the good meds (Propofol) which are even better than the sedations and that I wont rememer a thing. She tells me that she has had two scopes and dosen't remember a thing. My next nurse (Jody) then came and introduced herself to mom and I and said that they were ready for me and she was going to take me to the room. I said good bye to mom, Prep Nurse told her where she could wait and we were off.
Procedure Room (Pre-Scope) - The wheel me into this small room and I see that Dr. C is in there. I mention to Jody that my BP cuff had come off and she thanked me for telling her and as they had some more prep stuff to do she just took it off for the moment while everything else was done. I look over to the desk area and see that Dr. C is talking to a man in blue scrubs that I assume was the anesthesiologist and they were talking about the cases that they were doing that day. Jody gets me ready by putting electrodes on my chest and getting me to sign another form (to approve the dilation and biopsys) and Dr. C asks if I was noticing any differences with the new beta blockers. I told her we could really see a difference which she was surprised about. I then mention to her that I forgot to mention to her that I have blood in my stools and wondered if she could see anything that day. She tells me that if the blood was from the stomach that I wouldn't be able to see anything and that we would probably have to do a colonoscopy in the future. Jody then gets the BP cuff back on, puts a nasal cannula with oxygen on, has me turn on my side and get positioned where I needed to go. She then proceeds to tell me that she is going to spray the back of my throat to which I quickly replied "NO" and she nodded and thanked for reminding her. I tell her than what my dentist usually does (removes all locals before I get in the OR) Dr. C tells someone (the nurse taking report I assume) that she is going to give 4mg of versed and 75mg of Fentanyl and asks the other nurse to keep an close eye on the IV because she is concerned that amout going in through a small needle could make the liquid pour out under the skin. Jody puts on the mouth guard and straps it on while this is happening. I see Dr. C coming close with the scope and then....
During Scope - Yes I said during the scope. I didnt wake up for the actually swallowing portion but I did wake up in time to feel the scope going down my throat. I could feel it moving around and hear Dr. C saying what she was looking at and then she started to do the dilation. It was during this time that I completely panicked. The nurses had to hold me down and one nurse kept telling me to relax (!!!) and the other kept telling me to breath through my nose. Once the dilation was done I felt her bring the scope out and tell me that I was okay and it was over. I dont remember the next few seconds (just having the electrodes and mouth guard removed) but then I remember Jody moving me to the recovery bays.
Post-Scope Recovery Bay - I didnt even realize I was crying but Jody kept telling me it was okay and it was all over. She kept hitting the button to take my BP quite often and I was never left in the bay without a nurse (the other bays I could see nurses coming and going every like 5 minutes). Jody handed me kleenex and kept trying to get me to turn over on my side but I wanted on my back. She told me I would have to burp but I guess I was crying too much for that sensation. A new nurse, Recovery Nurse, came in at this point and Jody went back to the procedure rooms I guess. Recovery Nurse then said that the IV was very agitated so she quickly removed it thankfully. Dr. C came in and asked if I was okay. I don't quite remember what I said (apparently I was in shock) but I told her I was awake, it hurt badly and that I was told the anesthesiologist was going to give me medications. She looked confused and told me that she never told me that and it was never part of the plan. That upset me even more! She kept telling me it only took two minutes for the entire thing and it was all over and done. Then she comes out with "When we do the colonoscopy we will do it under a general anesthetic"!! I couldn't believe her!! Like that was my biggest concern at the moment and like I would agree to any type of procedure after what I just went through! She mentioned that she thought that my tachycardia is causing my problems. She thinks that the heart spasming is causing the esophagus to spasm (or something like that, not 100% sure). She then left and I just kept repeating that it hurt and I felt the entire thing and I just wanted to go home. Someone went and got my mom at that point and she walked in to me crying and so upset and assumed that they had mistakenly given me the local anesthetic and said she couldnt figure out why I was so upset. She said to the me then "Well we will just have to see what happens", Recovery Nurse kinda said something along the lines of it was done and that is when I told mom that I was awake through the entire thing and that I just wanted to go home. That was my only thing - I wanted to leave that place and just go home! Unit Nurse than comes in the room and apparently looked very upset and kept apologizing. Apparently she got sidetracked and never told Dr. C that she said she would get the anesthesiologist to give the propofol. She felt horrible about it and went to Dr. C to tell her what had happened. I think every nurse on the unit came in and out of the room at some point to apologize to mom (and me but I wouldnt look at them) and check on me. Dr C then came back in and talked to mom for a bit and just kept telling me it was only two minutes (like that mattered) and that she gave me the same dosages of meds as they normally do for the colonoscopy and that the man in the bay beside me was still sleeping for him and he went before me. She just said that I unfortunatly was that 1 in 100 person who didn't react properly to the medications. She didn't know what else to say but to apologize again and that she would leave it up to us to call and make any other appointments and would understand if I decided not to see her again (which is so helpful as she is not only my gastro doc but my internist and my cardiologist as well!). After she left Unit Nurse came in once again to apologise and mom asked if they at least found anything. Unit Nurse looked it up and said they found out that I had gastritis and some sort of reflux disease similar to GERD (mom cant remember what she said) and that no strictures were found and that they did do the dilation. She didn't mention anything about a biopsy so we aren't sure about that. After I calmed down enough and my vitals were normal the nurse told mom that she could take me home. They gave us some discharge papers (food and drink as tolerated) and sheets about gastritis and GERD and left. I got dressed quickly, and still crying, we left the hospital.
Immediatly Post - Scope at home - Mom asked if I wanted to get an ice cap on the way home but I didnt want anything, just wanted to get home. We drove home, me still upset and crying and asking questions and telling her (again) what happened. We got home and mom just told me to take a pain killer and go lie down for a while. I had some chocolate milk to take my morning meds (as I had nothing on my stomach and thought that might be bad with my meds) and then wanted soemthing more to drink so went upstairs and could hear mom talking to my dad in her bedroom (so I couldnt hear) about how things went and how I was so upset. I got some flavoured water (carbonated felt good) and went back to bed to try and sleep for a bit and did eventually fall asleep.
That Afternoon & Night - I got up shortly after Kyler got home and curled up on the couch. I showed him my IV wounds (hand swelled up and brusied, elbow did surprisingly nothing, couldnt even see the entry point!) and he asked what they did and I told him that basically they put a balloon in my throat and blew it up to try and make me be able to swallow better. He then asked 'What kind of doctors are they? That is so stupid!" which made me laugh. Mom had to go out and get a few things so I went with her. We didn't know how sore my throat would be so didn't get too much stuff but after having it done I knew it was going to hurt. Went out and got some popsicles and yogurt and went home. I had spiral macaroni and cheese (they are thinner and smaller) for supper and then some watermelon jello after that. When we sat down to watch American Idol mom was surprised and told me to look at my arm. I asked at what and she said exactly. I had no reaction at all to the tape from the IV!! No read marks, no rash, no tearing nothing! Something that my body produced when I panicked counteracted what every produces the rash apparently. I was so tired that mom 'sent' me to bed at 10pm.
Following Day - I slept was awake and slept and was awake and slept and got up around 1pm. I felt like I had been hit by a truck!!! Everything hurt so bad! My throat hurt at the top (like when you get a sore throat) and further down where the did the dilation; my right arm hurt from where I was tensed up because of the IV and just everything hurt. I came upstairs and took some pain meds and told mom and she said it was no wonder I hurt after the trauma I had been through. All afternoon I kept yawning and was just exhausted. At around 4 mom suggested I go down to bed until supper as I looked so tired. I said that I didn't know why I was so tired and she said it was from all the stress. I had spiral mac and cheese for supper again and sucked on some of the milk chocolate werthers and caramelts (they are so creamy it felt nice to swallow it).
As of now (Friday night) I still can not eat solids. I have had mac and cheese every night for supper, sticking with lots of popsicles, jello and werthers. Mom is concerned that it's not the pain that is keeping me from eating more solid types of food but that I am scared to. I dont really know which it is. Just thinking about it still upsets me and I am actually scared and worried about how I am going to react to my dentist appointment next week. Mom keeps telling me that we knew it was going to take me longer than normal to heal from the procedure becasue of the EDS and then now with the physical and emotional trauma it is going to take even longer. She wants me to make an appointment with my GP about getting it in my file that any procedure has to be done under a general anesthetic since locals dont work and apparently sedation doesnt work. She also wants me to get a medic alert bracelet saying that becasue if I was ever in an accident or something and they had to do anything, the sedation wouldnt take and just cause more problems. I will have to bring it up to my doctor as this is now a few items that she wants me to get a medic aleart bracelet becasue of and this one actually does scare me that if I dislocate something badly and they sedate me thinking I wont feel or remember anyhting when actually I will feel and remember it all!
Monday, December 5, 2011
Cardiologist / Internist / Gastroenterologist (?) Appointment Outcome
Hmm I thought I had already posted about this appointment but for some reason it didn't go up. So here it goes again (shorter version as I had to remember it all to type it up!) Well I headed back in to see Dr. C. to go over the barium swallow study and ask a few questions. Long story short -
- She says I have a 'lazy stomach' aka delayed gastric emptying aka gastroparesis. Basically food is sitting too long in my stomach and not passing through my system for way too long (this is probably also why it took a week for the barium from the study to pass through!). The barium study showed food particles left in my stomach and by taking that fact, the constipation issues, the severe heartburn, the very often nausea and the fact that I have absolutly no desire for food and can only eat items in very small quantities (like if I eat 1/4 of a hamburger at noon I am full for the day and don't feel any hunger except for slightly at bedtime which passes with very minimal food intake).
She doesnt seem to think that I need to have an endoscopy (based on the swallowing issues alone) but agrees that it is best to do one. She is also going to use a balloon to try and open up the esophagus to see if that will help with the swallowing problems. Going over the sheet that needs to be filled out, she wrote a pile of notes on it! Everything from "Get a good nurse - hard IV access", to "No beta blockers - keep check on pulse and bp" and finally "NO Xylocaine". There was a minute there that she was trying to argue giving me the local anesthetic anyways to help relax the gag reflux but finally relented when I told her about my history with locals. She seemed surprised when I asked about taking a beta blocker before hand and asked who told me that I shouldn't and then I had to remind her that she told me to stop them before surgery because the fasting messes up the autonomic issues and my bp bottomed out last surgery. Not only am I to not eat anything after midnight the night before but she also wants only liquids (salty liquids at that) the entire day before so she can hopefully get my stomach actually empty to do this test. She mentioned that she is a little concerned with the fragility of my body tissue especially as she wants to do a balloon to check for any strictures (I think that is what she said).
And finally, I convinced her to change my beta blocker medication but keep the same equivilant dose. It was a tough fight but I finally got her to acknowledge that I knew my body better than her and that I was coming up to tolerance with the one I was on and wanted to switch to a new one before I became tolerant to it so that dosage increases don't have to occur. She was firm that switching the medications wouldn't do anything but mom and I both told her that in the past it does. It's not necessarily the active ingredient but something makes them work better when they are rotated out (like all my other medications). On the autoimmune front she wants the tests re-done and seemed to just dismiss all the autoimmune issues I have been having and told me that I need to find a new rheumatologist (well duh!!!!).
But I got my meds switched, the endoscope ordered (not til january though, don't want to have it done around Christmas as there is so much traveling and I have enough eating problems to deal with as it is) and I got yet another pretty title to add to my evergrowing list of disorders. This is a very common issues in EDSers though so it's not a shocker at all. What sucks though is that she didn't give any suggestions at all at what I can do to help those issues. How can I get more food in when I don't want to eat (if I try to force myself I reach a limit where if I take another bite I literally throw up), how can I swallow food, is there something that can help with the digestive issues, is there possibilities that there are actually food allergies that are making this issue worse? All questions with no answers. Seems thats all I get anymore - Just more questions with no answers in sight.
My mom is slightly happy though that there is finally something we can tell to peolpe when I go for a meal and can literally only eat two bites. She looked it up and was surprised at just how many of the issues I actually was having (she used to question the 'severe' part of the relux that doctor's always tack on). It shows why I don't want to eat, why I CAN'T eat and more. And of course it is just my luck that the ONLY symptom I don't have is weight loss :( That's one side effect I wish I had (especially after the appointment I had today!!! But more on that later!)
- She says I have a 'lazy stomach' aka delayed gastric emptying aka gastroparesis. Basically food is sitting too long in my stomach and not passing through my system for way too long (this is probably also why it took a week for the barium from the study to pass through!). The barium study showed food particles left in my stomach and by taking that fact, the constipation issues, the severe heartburn, the very often nausea and the fact that I have absolutly no desire for food and can only eat items in very small quantities (like if I eat 1/4 of a hamburger at noon I am full for the day and don't feel any hunger except for slightly at bedtime which passes with very minimal food intake).
She doesnt seem to think that I need to have an endoscopy (based on the swallowing issues alone) but agrees that it is best to do one. She is also going to use a balloon to try and open up the esophagus to see if that will help with the swallowing problems. Going over the sheet that needs to be filled out, she wrote a pile of notes on it! Everything from "Get a good nurse - hard IV access", to "No beta blockers - keep check on pulse and bp" and finally "NO Xylocaine". There was a minute there that she was trying to argue giving me the local anesthetic anyways to help relax the gag reflux but finally relented when I told her about my history with locals. She seemed surprised when I asked about taking a beta blocker before hand and asked who told me that I shouldn't and then I had to remind her that she told me to stop them before surgery because the fasting messes up the autonomic issues and my bp bottomed out last surgery. Not only am I to not eat anything after midnight the night before but she also wants only liquids (salty liquids at that) the entire day before so she can hopefully get my stomach actually empty to do this test. She mentioned that she is a little concerned with the fragility of my body tissue especially as she wants to do a balloon to check for any strictures (I think that is what she said).
And finally, I convinced her to change my beta blocker medication but keep the same equivilant dose. It was a tough fight but I finally got her to acknowledge that I knew my body better than her and that I was coming up to tolerance with the one I was on and wanted to switch to a new one before I became tolerant to it so that dosage increases don't have to occur. She was firm that switching the medications wouldn't do anything but mom and I both told her that in the past it does. It's not necessarily the active ingredient but something makes them work better when they are rotated out (like all my other medications). On the autoimmune front she wants the tests re-done and seemed to just dismiss all the autoimmune issues I have been having and told me that I need to find a new rheumatologist (well duh!!!!).
But I got my meds switched, the endoscope ordered (not til january though, don't want to have it done around Christmas as there is so much traveling and I have enough eating problems to deal with as it is) and I got yet another pretty title to add to my evergrowing list of disorders. This is a very common issues in EDSers though so it's not a shocker at all. What sucks though is that she didn't give any suggestions at all at what I can do to help those issues. How can I get more food in when I don't want to eat (if I try to force myself I reach a limit where if I take another bite I literally throw up), how can I swallow food, is there something that can help with the digestive issues, is there possibilities that there are actually food allergies that are making this issue worse? All questions with no answers. Seems thats all I get anymore - Just more questions with no answers in sight.
My mom is slightly happy though that there is finally something we can tell to peolpe when I go for a meal and can literally only eat two bites. She looked it up and was surprised at just how many of the issues I actually was having (she used to question the 'severe' part of the relux that doctor's always tack on). It shows why I don't want to eat, why I CAN'T eat and more. And of course it is just my luck that the ONLY symptom I don't have is weight loss :( That's one side effect I wish I had (especially after the appointment I had today!!! But more on that later!)
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