Well, for some reason I can not post replies to any comments on this blog. I know a few people had this problem a while ago and if they can let me know what they did to fix it I would be very very happy :D So, since I can not post the replies directly to the comments, I will post them here. Both comments are from Em so here are the replies:
Reply to: "Starting to Get Depressed"
AAAHHH I feel horible! For some reason I didn't get an e-mail telling me that you left this comment! I would have responded a lot earlier if I had of!!!
There are sites to get looking for doctors, I know a few of them and actually got the name of the geneticist who diagnosed me off of one (but I had to travel 4+ hours for it). The problem right now is that my parents are getting just as frustrated with doctors and my care as I am. They get their hopes up that a new doctor might be able to 'fix' me but when nothing happens they don't get to be upset about it becasue I get upset about it and they are trying to cheer me up. (I know I am VERY lucky to have two supportive and caring parents!). So after years and years of doctors (I have had bad health my entire life basically) and having literally only 2 out of like 20 doctors help me, they just don't want to have to travel the 4+ hours to get to the next biggest city.
The county I live in (about 5 towns) has a population of 15,000. The city closest to us has 70,000 and we have to travel 1.5 hours to a city with a teaching hospital that we have already seemed to 'outgrow' the departments that I need. So the next two biggest cities are "H" that is about 3.5 hours away (but has the added benefit of having family about 1 hour away) or "T" which is about 4.5 hours away (again though we have family about an hour away). However, my dad is also 'medically retired' and has had his neck fused twice and has a bad back and shoulders and he is the one that would have to do all the driving so it's hard on him too.
I did actually find one piece of info that might actually be good news. However, I need to talk to my GP about if he feels I do have lupus on top of EDS before I start that journey. It is a rheumy clinic in the town 1.5 hours away but that just might be able to help and has a bonus of NOT being attached to the teaching hospital (have had a few 'divisions' of the hospital tell me nothing can be done).
Wow sorry for the long comment! I still have to reply to your other one too! However, you did give me a good idea for a blog post as I realized I have never posted how I went about getting diagnosed in the first place!
Okay I promise the next reply won't be as long!! Was just trying to explain the problems of living in small town's and having to do so much traveling to even get to see a doctor that might be able to help.
Reply to: "Things Going Pretty Well"
I did get your reply the night before the test luckily so didn't stress too much about the liquid. It was horrible but I was able to get it down at least. Apparently I ended up having a Barium Swallow as well as a Barium Meal as I had to do a lot more than you did, including the table going from vertical to horizontal and back to vertical. I thought I was just having the Barium Swallow (no table movement) but got everything done by the sounds of it. Not much to say here as you can read what happened here. I am slightly worried however as I am not sure that I am 'eliminating' it properly as last night (a week from the test) was the first time I noticed any changes and ended up with a fair deal more blood than normal. I know TMI right lol
Well that is it, will be posting a new post today or tomorrow to go over a few things. And again, if you know how to fix the comments issue please let me know!
Tuesday, August 30, 2011
Tuesday, August 23, 2011
Barium Swallow Study
So after a few weeks of nerves and being scared about what I would actually have to do (and drink!), I went in this morning for my barium swallow study. I was unable to eat or drink anything after midnight last night and was up bright and (really) early so we could be at the hospital for 8:15am. Like normal, my mom got up early as well to take me in for the test (I don't go to tests alone anymore, just in case I feel too yucky to drive the 20+ minutes to get back home).
We get to the hospital and I get registered in for the test and told to take a seat and wait for my name to be called. I motioned to mom to move over to the other side of the area so I could hear my name being called and had barely sat down in the new seats when they came and called my name. Mom got up to go with me but the lady told her she could stay in the main waiting room and that I would be back in about 20-30 minutes. I get back to the area and am told to change into a gown, the old gowns where you put one on with the opening in the back and then another on like a housecoat with the opening in the front. Thankfully I have learned through all these years of testing and had worn yoga pants with no metal in them so I was able to leave those on. I then went and waited in a second waiting area but had only read a page or so in my book and I was being called into the testing area. (Note: There were two ladies in the room with me. There was the lady that was at the computer and handling all of that stuff, I'll call her the 'tech' and another lady that prepared all the mixtures and physically got me into the different positions, I'll call her the aide as she aided me lol and I have no clue how else to describe her)
I go into the testing room and they have me read this laminated sheet that stated what the test was, what was going to occur and what to do following the test. I then had to fill out a form with the normal questions but wasn't sure what to put for heart condition. I told them I was on heart medications and that my heart is structurally fine, it's the way my brain tells my heart to work that is the problem. Tech said that was okay because they just needed to know as they sometimes give an injection if your stomach empties too fast but if you are on heart medications or have any heart problem, they do not do the injection (yay a positive to dysautonomia :D). I also had to explain said dysautonomia and go over a breif description of what EDS was and what exactly my swallowing problems were. They seemed to be more interested in how I was with fluids more than how I was with solids for some reason. They then tell me how I would be starting standing up on this device and that it would then slowly be put into a horizontal position then after a few scans it would be put back into a vertical position. I mention then that because of the issues going on that I might get dizzy so tech said she would make it stand up as slow as she could.
So I go over and stand on the little ledge at the bottom of the table. The aide brings over a cup and a package. She tells me that this is a gas producer and that I need to swallow it down as soon as possible and that it will make me want to burp but I needed to try my hardest not to. She then dumps the crystals in the cup and I can hear fizzing and the amount getting larger in the cup so I gulped it down as quick as could be. The not burping was the hardest part (imagine guzzling 4 cans of pepsi and being told you can't burp!). A few shots (well special xray scans were done - I will just refer to them as shots as it's easier) were taken and then she brings over another cup. This is the barium and I had to hold it in my left hand and when the tech told me to start I had to drink it down as quickly as I could. Well this was the tricky part. It was so thick that I could only take very small little sips and I managed to gag a few times before managing to actually get it all down. The aide came over and took the cup and wiped me mouth off. I had to stand there and then turn to the left and then move this way and that way etc while they got all the shots they needed. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally.
Okay now the horizontal part. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally. Strangely this made my stomach feel bettter (probably because of the gas crap). I then had to do a 'log roll' from my back -> left side -> stomach -> right side -> back again. A bunch more shots were taken in different positions and then they put me in the main position (there was a specific name for it but I can not remember at this point). I was lying on my right side with my left leg bent up with me resting on it (like my body was at a 45* angle), my left arm up above my head and my righ arm straight down at my side. I did get a pillow for my head and do wish that I had of asked for one for my leg but didn't. A bunch more shots were taken and aide emerges with yet another cup. She gets this one ready with a straw and tells me not to move and that she would put the straw in my mouth when it was time. This was a thinner dilution of the barium. Tech wanted a few more shots and then aide put the straw in my mouth and I had to drink it down as fast as I could as well. I guess I was taking longer than normal as she kept asking the aide if I was almost done to which I almost wanted to ask her if she wanted that crap in my stomach or on her floor, because that is where it would be if I drank it any faster! Thankfully no gagging on this one! The aide did come over and wipe my mouth as I had some of the liquid on my lips and it turns chalky really quickly (and I was having a good ol' sweat so she wiped my face off as well which was nice). A bunch more moving around and rolling and shots and we get started on the last phase.
Horizontal -> Vertical! I was very nervous about this and even though I told both of them about the dysautonomia issues, I am pretty sure that they didn't really understand them. Aide made sure that I was lined up and had my feet planted properly and tech then started tilting it up. They got about half way up and the tech quickly had the aide come over and pull out a handle on the side for me to hold on to. When they had me all the way up they asked if I was okay or dizzy and miraculusly I felt fine! For about a minute and then everything started closing in and got very dizzy. The let me rest agains the bed for a bit but then we had to get on with the test. The last thing I had to do was take a mouthfull of the thinner barium drink and hold it in my mouth. Then the tech would count to three and I would have to gulp it all down in one go. We did three of these with different angles of my body for the shots and finally they told me I could go sit down. The aide got me a washcloth to wipe off my face and hands and I was surprised at how chalky and dry the liquid already was! A quick check of the shots and I was good to go. They made sure to tell me that I was to drink lots of liquids for the next few days (and that I would probably have white poop and to not be alarmed lol). I quickly got changed and went out to find mom.
The more I was walking the more lightheaded I was getting and I just really wanted to go to the car where I could sit down. I didn't even say a word to mom until we were out of the parking lot! It was then I realized I should have got a drink at the hospital's Tim Hortons so on the way home mom stopped and we both got Ice Cap's (figured the sugar might help a bit). Got home and curled up with K on the couch for a bit then downed a glass of chocolate milk and went back to bed. I got up and really didn't feel good at all. I kept drinking steadily but just felt 'yucky'. Went up for supper but couldn't eat much as I was having pains in my stomach. However, I now know that the strange pains I have been getting in my abdomen are from digestion issues as they have been very significant in those areas tonight. I have also been having autonomic issues. I haven't gone in to full sweats at all (except at the hosptail) but have been 'clammy' all day and night. Have been feeling pretty shakey as well and very tired. So with that all typed up, I am off to bed! My parents have to go out of town tomorrow as a friend's mother passed away so it will be just K and I all day tomorrow so I am hoping that I am feeling better in the morning!! Even if I am not, K is a great kid and it will be okay. We can just cuddle on the couch and watch movies :D
Side Note: Mom got a nice surprise today. While she was waiting in the main waiting area for me she noticed someone she hadn't seen in years. She used to be best friends with a lady that had a severly handicap son that was about 6 months older than me. M, the son, was always over at our house with his mom and mom was the only one he would ever let cut his hair. The mom passed away about 12 years ago and my mom hadn't seen M in about 10 or 11 years. Well she looked up at one point and saw M in his wheelchair with his worker. She was looking to see if it really was him when their eyes met and M started clapping his hands and laughing and just getting all excited. So my mom went over to them and said his name and he started laughing and giggleing all over again. The worker said that M obviously knew my mom from somewhere and was just as amazed that he recognized her after all these years. Mom was very happy to see him and to see how he was doing as we had lost touch over the years. Unfortnaly when I came out of the test I had one mission in mind (to get to the car asap) and didn't properly get to see him or see if he recognized me but it was still good. It was like mom was meant to go with me and today was the day I was meant to have this test (spent a good deal of telephone tag setting this appointment up) so mom could see M and know that he was okay.
We get to the hospital and I get registered in for the test and told to take a seat and wait for my name to be called. I motioned to mom to move over to the other side of the area so I could hear my name being called and had barely sat down in the new seats when they came and called my name. Mom got up to go with me but the lady told her she could stay in the main waiting room and that I would be back in about 20-30 minutes. I get back to the area and am told to change into a gown, the old gowns where you put one on with the opening in the back and then another on like a housecoat with the opening in the front. Thankfully I have learned through all these years of testing and had worn yoga pants with no metal in them so I was able to leave those on. I then went and waited in a second waiting area but had only read a page or so in my book and I was being called into the testing area. (Note: There were two ladies in the room with me. There was the lady that was at the computer and handling all of that stuff, I'll call her the 'tech' and another lady that prepared all the mixtures and physically got me into the different positions, I'll call her the aide as she aided me lol and I have no clue how else to describe her)
I go into the testing room and they have me read this laminated sheet that stated what the test was, what was going to occur and what to do following the test. I then had to fill out a form with the normal questions but wasn't sure what to put for heart condition. I told them I was on heart medications and that my heart is structurally fine, it's the way my brain tells my heart to work that is the problem. Tech said that was okay because they just needed to know as they sometimes give an injection if your stomach empties too fast but if you are on heart medications or have any heart problem, they do not do the injection (yay a positive to dysautonomia :D). I also had to explain said dysautonomia and go over a breif description of what EDS was and what exactly my swallowing problems were. They seemed to be more interested in how I was with fluids more than how I was with solids for some reason. They then tell me how I would be starting standing up on this device and that it would then slowly be put into a horizontal position then after a few scans it would be put back into a vertical position. I mention then that because of the issues going on that I might get dizzy so tech said she would make it stand up as slow as she could.
So I go over and stand on the little ledge at the bottom of the table. The aide brings over a cup and a package. She tells me that this is a gas producer and that I need to swallow it down as soon as possible and that it will make me want to burp but I needed to try my hardest not to. She then dumps the crystals in the cup and I can hear fizzing and the amount getting larger in the cup so I gulped it down as quick as could be. The not burping was the hardest part (imagine guzzling 4 cans of pepsi and being told you can't burp!). A few shots (well special xray scans were done - I will just refer to them as shots as it's easier) were taken and then she brings over another cup. This is the barium and I had to hold it in my left hand and when the tech told me to start I had to drink it down as quickly as I could. Well this was the tricky part. It was so thick that I could only take very small little sips and I managed to gag a few times before managing to actually get it all down. The aide came over and took the cup and wiped me mouth off. I had to stand there and then turn to the left and then move this way and that way etc while they got all the shots they needed. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally.
Okay now the horizontal part. The aide then came over to make sure that my feet were firmly planted and that I was lined up properly and then the tech made the bed go horizontally. Strangely this made my stomach feel bettter (probably because of the gas crap). I then had to do a 'log roll' from my back -> left side -> stomach -> right side -> back again. A bunch more shots were taken in different positions and then they put me in the main position (there was a specific name for it but I can not remember at this point). I was lying on my right side with my left leg bent up with me resting on it (like my body was at a 45* angle), my left arm up above my head and my righ arm straight down at my side. I did get a pillow for my head and do wish that I had of asked for one for my leg but didn't. A bunch more shots were taken and aide emerges with yet another cup. She gets this one ready with a straw and tells me not to move and that she would put the straw in my mouth when it was time. This was a thinner dilution of the barium. Tech wanted a few more shots and then aide put the straw in my mouth and I had to drink it down as fast as I could as well. I guess I was taking longer than normal as she kept asking the aide if I was almost done to which I almost wanted to ask her if she wanted that crap in my stomach or on her floor, because that is where it would be if I drank it any faster! Thankfully no gagging on this one! The aide did come over and wipe my mouth as I had some of the liquid on my lips and it turns chalky really quickly (and I was having a good ol' sweat so she wiped my face off as well which was nice). A bunch more moving around and rolling and shots and we get started on the last phase.
Horizontal -> Vertical! I was very nervous about this and even though I told both of them about the dysautonomia issues, I am pretty sure that they didn't really understand them. Aide made sure that I was lined up and had my feet planted properly and tech then started tilting it up. They got about half way up and the tech quickly had the aide come over and pull out a handle on the side for me to hold on to. When they had me all the way up they asked if I was okay or dizzy and miraculusly I felt fine! For about a minute and then everything started closing in and got very dizzy. The let me rest agains the bed for a bit but then we had to get on with the test. The last thing I had to do was take a mouthfull of the thinner barium drink and hold it in my mouth. Then the tech would count to three and I would have to gulp it all down in one go. We did three of these with different angles of my body for the shots and finally they told me I could go sit down. The aide got me a washcloth to wipe off my face and hands and I was surprised at how chalky and dry the liquid already was! A quick check of the shots and I was good to go. They made sure to tell me that I was to drink lots of liquids for the next few days (and that I would probably have white poop and to not be alarmed lol). I quickly got changed and went out to find mom.
The more I was walking the more lightheaded I was getting and I just really wanted to go to the car where I could sit down. I didn't even say a word to mom until we were out of the parking lot! It was then I realized I should have got a drink at the hospital's Tim Hortons so on the way home mom stopped and we both got Ice Cap's (figured the sugar might help a bit). Got home and curled up with K on the couch for a bit then downed a glass of chocolate milk and went back to bed. I got up and really didn't feel good at all. I kept drinking steadily but just felt 'yucky'. Went up for supper but couldn't eat much as I was having pains in my stomach. However, I now know that the strange pains I have been getting in my abdomen are from digestion issues as they have been very significant in those areas tonight. I have also been having autonomic issues. I haven't gone in to full sweats at all (except at the hosptail) but have been 'clammy' all day and night. Have been feeling pretty shakey as well and very tired. So with that all typed up, I am off to bed! My parents have to go out of town tomorrow as a friend's mother passed away so it will be just K and I all day tomorrow so I am hoping that I am feeling better in the morning!! Even if I am not, K is a great kid and it will be okay. We can just cuddle on the couch and watch movies :D
Side Note: Mom got a nice surprise today. While she was waiting in the main waiting area for me she noticed someone she hadn't seen in years. She used to be best friends with a lady that had a severly handicap son that was about 6 months older than me. M, the son, was always over at our house with his mom and mom was the only one he would ever let cut his hair. The mom passed away about 12 years ago and my mom hadn't seen M in about 10 or 11 years. Well she looked up at one point and saw M in his wheelchair with his worker. She was looking to see if it really was him when their eyes met and M started clapping his hands and laughing and just getting all excited. So my mom went over to them and said his name and he started laughing and giggleing all over again. The worker said that M obviously knew my mom from somewhere and was just as amazed that he recognized her after all these years. Mom was very happy to see him and to see how he was doing as we had lost touch over the years. Unfortnaly when I came out of the test I had one mission in mind (to get to the car asap) and didn't properly get to see him or see if he recognized me but it was still good. It was like mom was meant to go with me and today was the day I was meant to have this test (spent a good deal of telephone tag setting this appointment up) so mom could see M and know that he was okay.
Tuesday, August 16, 2011
Things going pretty well
Making some pretty good progress around here. Some of it for me, some for others. For me, as my nephew is my number 1 priority in life, the most important part is that my dad has decided that maybe we should try medications for his 'inattentive adhd'. Mom agreed and has made an appointment to see the doctor about it next week. Mom does want to ask a bunch of questions as she is worried because K is a very very poor eater and one side effect is lack of appetite. Secondly it can cause problems sleeping and K wakes up most nights in the middle of the night and is wide awake for an hour or so (he reads his book while he is awake). We are going to try a few things about the sleeping issues and as much as I don't want K to have to go through bloodwork, I really think he should get checked out vitamin and health wise to make sure he isn't missing anything important (he does take a daily multivitame and does eat a bit from each food group except meat, but he eats eggs for protein). I think dad changed his mind as he has seen just how frustrated and upset K gets when he forgets things and how he gets really down on himself for forgeting things or not grasping what you are trying to tell him and none of that is his fault. We won't lose anything by trying the medications route. If it doesn't help him it's no big deal and we just stop giving them to him but I would rather do that than look back in ten years time and go through the 'what if's' of what could be done for him.
Secondly, I go in next tuesday for a Barium Swallow Test. Really really not looking forward to this but am hoping it will provide some answers. I am having issues eating certain items. Any meat with an ounce of fat on it, I can just not swallow. Breads are another no-no. Certain textures just won't go down either. I can eat only very small quantaties between the horrible heart burn (already on omeprazole for this) or the intense nausea I get once I start eating. I am having problems with feeling like I am getting something stuck in my throat all the time. Feels like I have no gag reflex at all. I take a pill and can feel it still in my throat and have to take another drink of water for it to go all the way down. I 'choke' on water when drinking so stick to a straw 90% of the time as that seems to help. I have also had the feeling for a very long time that my esophagus (I am horrid at spelling) gets kinks in it that are semi-painful that I have to rub my throat and try to get it realxed before things feel better. However, I am also very nervous about this test. From what I have read it sounds basically like a tilt table test to check what you are drinking. I can have nothing to eat or drink from midnight the night before and thankfully I am an early morning appointment slot. I am assuming that I should stop the omeprazole before the test so that the GERD will show up but I am not sure how long before hand. Als I am worried about the autonomic stuff if this test is in fact like a tilt table. One the one hand I am thinking that maybe I should skip my dose becasue I will be fasting and don't want a repeat of what happened after surgery but on the other hand I am thinking that I should take an extra dose to counteract the possible POTS flare up from the movement of the test. I am going to call my GP tomorrow as I have to make an appointment anyways and ask them about the medications, sadly though they have really no clue as to the autonomic issues to truly understand.
So basically two good things progressing around here which I thought I would share with all of you. I am glad that my parents have finally opened up to the possibility of medicating K. Don't get me wrong, I hate the fact that K might have to take medications but if it helps him to truly reach his potential I am all for it. He is above average in intelligence but tests way below that level. I just want him to get some self-confidence in himself and have him realize and accept that he is really one smart kid.
If anyone has had a barium swallow test and has any ideas / suggestions about the medication issues I am dealing with (mainly the beta blocker) I would to hear them! If you have done this test and have suggestions let me know too please :)
Secondly, I go in next tuesday for a Barium Swallow Test. Really really not looking forward to this but am hoping it will provide some answers. I am having issues eating certain items. Any meat with an ounce of fat on it, I can just not swallow. Breads are another no-no. Certain textures just won't go down either. I can eat only very small quantaties between the horrible heart burn (already on omeprazole for this) or the intense nausea I get once I start eating. I am having problems with feeling like I am getting something stuck in my throat all the time. Feels like I have no gag reflex at all. I take a pill and can feel it still in my throat and have to take another drink of water for it to go all the way down. I 'choke' on water when drinking so stick to a straw 90% of the time as that seems to help. I have also had the feeling for a very long time that my esophagus (I am horrid at spelling) gets kinks in it that are semi-painful that I have to rub my throat and try to get it realxed before things feel better. However, I am also very nervous about this test. From what I have read it sounds basically like a tilt table test to check what you are drinking. I can have nothing to eat or drink from midnight the night before and thankfully I am an early morning appointment slot. I am assuming that I should stop the omeprazole before the test so that the GERD will show up but I am not sure how long before hand. Als I am worried about the autonomic stuff if this test is in fact like a tilt table. One the one hand I am thinking that maybe I should skip my dose becasue I will be fasting and don't want a repeat of what happened after surgery but on the other hand I am thinking that I should take an extra dose to counteract the possible POTS flare up from the movement of the test. I am going to call my GP tomorrow as I have to make an appointment anyways and ask them about the medications, sadly though they have really no clue as to the autonomic issues to truly understand.
So basically two good things progressing around here which I thought I would share with all of you. I am glad that my parents have finally opened up to the possibility of medicating K. Don't get me wrong, I hate the fact that K might have to take medications but if it helps him to truly reach his potential I am all for it. He is above average in intelligence but tests way below that level. I just want him to get some self-confidence in himself and have him realize and accept that he is really one smart kid.
If anyone has had a barium swallow test and has any ideas / suggestions about the medication issues I am dealing with (mainly the beta blocker) I would to hear them! If you have done this test and have suggestions let me know too please :)
Tuesday, August 2, 2011
Starting to get depressed..
I know it has been a while, yet again, since I posted. Last week my family went away to a gorgeous cottage about 3 hours north of us and it was a very nice, quiet and pretty relaxing vacation. Until wednesday... Anyways I will write about that a little later (I wrote up a 'diary' of each day we were away and will get posted up here as soon as I get it off of my iPod Touch). The main thing right now though is I can feel myself starting to get depressed again but there is nothing I can really do. There are a few reasons for feeling like this:
1) After a couple of months in limbo waiting to see when my rheumatologist would be coming back from his absence, we read in the paper just before we went away that he was in fact retiring and that we had until August 5th to contact the office about getting copies of your files. I really honestly have absolutely no clue what to do about all this. This is the ONLY doctor that actually appears to give a crap about my quality of life and not just into drugging me up. He is the one that has listened to me, done all my referals, order all my tests, given me all my cortisone in my shoulder. The only one who has done anything really productive in my health and actually understands the concept of preventative medicine before we have a major problem. This comes when we were in the middle of a lot of different ongoing issues - my knee and the OS's at the clinic not wanting to operate and claiming my knee is stable (the dislocation last week says otherwise), the strong feeling that something autoimmune was going on (which now I have blood tests to show that he was right but can't go over them with him), the ongoing shoulder issue, the osteoporosis and wrist injuries issue and just keeping up on new treatments and medications and keeping my life having some quality to it. He is (was) the only rheumy in my town, the best in the next town (1 hour drive) already told me she wouldn't take me way back when I was diagnosed and my parents don't want to drive the 4+ hours to the other medically large towns. My GP just doesn't get EDS so that isnt an option either so it's going to be a lot of trial and error until we find a doctor that will a) take me as a patient, b) listen to me and treat me as an equal in knowledge on EDS c) willing to keep up to date on all things EDS, d) willing to try things to make things better and e) interested enough to have me as a full time patient in many different areas. Which leads me to:
2) When am I going to get something medically to help me? My right knee is messed up even though the knee clinic deemed it stable and not needing surgery yet I am still in considerable pain and not able to fully use the knee. Having to baby it or end up in severe pain. At the cottage last week I had to be driven to the beach even though it was only a 5 - 10 minute walk from our cottage as my knee just wouldn't make it. Right now my entire left arm is in trouble. I made a grab to catch a big beach umbrella / sun shade and managed to hurt the fingers, thumb and wrist initially but am up to the shoulder even being in bad enough pain to take a breakthrough med because. My left ankle just gets weaker and weaker as the days go by and I am seriously considering asking for cortisone in my hips. So many things that I would love to get fixed, through surgery, procedures or whatever but there are no doctor's willing to even attempt this as they will most likely not succeed 100% so they don't want that on their record. Even if I had a 50-50 chance of improvement in some areas, I am willing to risk it at this point. It is so heartbreaking to read of all these people going in for surgery, or having a doctor suggest a procedure etc knowing that there is no doctor that I have found that will do a damn for me.
I am just getting so sick of going to new doctor after new doctor only for those doctors to declare I am too risky and they don't want to try something because it could make it worse. I am sick of the doctor game and am being thrown right back into it at this point when I just don't want to do it anymore. I don't even know what to do anymore.
1) After a couple of months in limbo waiting to see when my rheumatologist would be coming back from his absence, we read in the paper just before we went away that he was in fact retiring and that we had until August 5th to contact the office about getting copies of your files. I really honestly have absolutely no clue what to do about all this. This is the ONLY doctor that actually appears to give a crap about my quality of life and not just into drugging me up. He is the one that has listened to me, done all my referals, order all my tests, given me all my cortisone in my shoulder. The only one who has done anything really productive in my health and actually understands the concept of preventative medicine before we have a major problem. This comes when we were in the middle of a lot of different ongoing issues - my knee and the OS's at the clinic not wanting to operate and claiming my knee is stable (the dislocation last week says otherwise), the strong feeling that something autoimmune was going on (which now I have blood tests to show that he was right but can't go over them with him), the ongoing shoulder issue, the osteoporosis and wrist injuries issue and just keeping up on new treatments and medications and keeping my life having some quality to it. He is (was) the only rheumy in my town, the best in the next town (1 hour drive) already told me she wouldn't take me way back when I was diagnosed and my parents don't want to drive the 4+ hours to the other medically large towns. My GP just doesn't get EDS so that isnt an option either so it's going to be a lot of trial and error until we find a doctor that will a) take me as a patient, b) listen to me and treat me as an equal in knowledge on EDS c) willing to keep up to date on all things EDS, d) willing to try things to make things better and e) interested enough to have me as a full time patient in many different areas. Which leads me to:
2) When am I going to get something medically to help me? My right knee is messed up even though the knee clinic deemed it stable and not needing surgery yet I am still in considerable pain and not able to fully use the knee. Having to baby it or end up in severe pain. At the cottage last week I had to be driven to the beach even though it was only a 5 - 10 minute walk from our cottage as my knee just wouldn't make it. Right now my entire left arm is in trouble. I made a grab to catch a big beach umbrella / sun shade and managed to hurt the fingers, thumb and wrist initially but am up to the shoulder even being in bad enough pain to take a breakthrough med because. My left ankle just gets weaker and weaker as the days go by and I am seriously considering asking for cortisone in my hips. So many things that I would love to get fixed, through surgery, procedures or whatever but there are no doctor's willing to even attempt this as they will most likely not succeed 100% so they don't want that on their record. Even if I had a 50-50 chance of improvement in some areas, I am willing to risk it at this point. It is so heartbreaking to read of all these people going in for surgery, or having a doctor suggest a procedure etc knowing that there is no doctor that I have found that will do a damn for me.
I am just getting so sick of going to new doctor after new doctor only for those doctors to declare I am too risky and they don't want to try something because it could make it worse. I am sick of the doctor game and am being thrown right back into it at this point when I just don't want to do it anymore. I don't even know what to do anymore.
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