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.
Monday, July 11, 2011
A week long 'vacation' and a new toy
K passed into grade 5 next year, out of 19 marks he got 13 B's and only 6 C's which is amazing for him and we are all so proud of him. He has been wanting an iPod touch for quite a long time now (almost a year) and had been saving up his money and had got to $100 on his own. So my parents told him that they would pay for the rest of the iPod since he did so well saving his money and so well in school (and Karate - he is now a green belt!!!) and I told him that I would pay for his first iTunes card and to put an extended warant on it. He got his on June 30th. I had some troubles getting it all set up and working because of the strong protection I have on our WiFi network and the fact that we never knew that you had to have either an iTunes card or a credit card on file to set up an account. Got those figured out though and that evening he was able to play it. We kept looking for free games for him but as it was getting late, I had him write down 10 games that he wanted and I would work on downloading them as he had to go to bed.
Well I downloaded those games and then went searching in the App Store to see what else there was. After a lot of looking and drooling over Apps and songs that I would love to have, on July 2nd I went in to town and bought myself an iPod as well (July 1st was Canada day so all the stores were closed). I have already downloaded a few CD's, a bunch of games, a bunch of really cool medical type applications and lots more :) So K and I have both been pretty much glued to our iPod's the last few weeks.
As for the 'vacation', it was really only my mom, K and I going up to visit my grandmother and some other family. My one cousin has some serious issues that she needs to work out for herself as she is really getting not only herself, but the entire family up there, into problems and just way too much drama. My grandmother is so stressed out that we are all worried that the issues that my cousin is going through is going to end up giving my grandmother another heartattack or other serious health complication. And of course somehow I got roped into the drama and feeling so guilty myself and feeling so horrible that something I did innocently caused a big scene and a lot of yelling and crying.
As a bit of a back story, one of my cousin's has two children, both boys: D1 is 13 (he has ADHD and is on medications because of this) and D2 is 10. While I was growing up we always played this one game of cards (not sure where it came from as I have heard no one else that has played any type or version of this game) basically on most nights the entire family is together. We got out of that as my generation got older and while K's generation was too young. Well D1 loves to play games and had been asking relentlessly for a few days to play a game of cards. I managed to get my mom to agree to play (more on that part later) and she was too 'tired' but myself, K, D1, D2 and their mom all sat down to play this game. We were playing cards while 'America's Got Talent' was on and I gave up watching the show to play the card game
We hadn't all even sat down yet when D1 said he would be right back. He comes back to the house with a drumstick and some chips and sat back down to play cards. I wasn't too pleased about this as I had been telling K that if he wanted some of the taffy I bought him, and the boys were around, he would have to offer to share his candy. To be telling him this and then to have D1 bring over not one, but two treats didn't leave me too impressed. After that something else came up with him running home to get his own pennies (we 'gamble' with pennies in the game) instead of just using some of his moms. A few times while we were playing I had to ask Kyler to pay attention to the game instead of watching the show and asked D1 and D2 a few times as well. I had got up to get myself some Doritos and D1 was again relentless in asking for some. I pointed out that he had already had some of his own but then gave in and told him that when I opened the bag I would give him some. I had just opened the bag and it was my turn to shuffle and deal. While doing this he asks again for chips and I asked him if it looked like I was busy doing something (yes) and that maybe he should wait until I am not busy to ask. After I was done dealing I poured him a bowl of chips. After a good half hour or so of having to repeatidly ask D1 to pay attention to the game I finally said "D1 are you playing this game or watching TV, you can not do both" and he mumbled and got back to the game. We finished up shortly after and all just kept our 'winnings' out so we could play the next day. I thought it was a good night and had enjoyed playing a game with the kids.
About 30 minutes after they all left (My nan and both of my cousins and their familes all live in the same small townhouse complex that is maybe half a block big in total, so it takes about 30 seconds to get from one place to the other) Kyler and I were cuddling on the couch and watching the news (this was while William and Catherine were in Canada and my nan was just fixed on the news). Nan answers it and then tells me that the phone is for me. I answer it and it is D1 informing me that I had really hurt him and that K isn't the only one with a disability, he has one too and can't focus on things and it wasn't fair to call him out and on and on about how hurt he was and his disability. I calmly told him that he had been bugging us for 2 hours to play the game, we agreed to play it because of him and that I didn't yell at him or get mad at him I simply asked him to choose between watching the television show or playing the card game. He mumbled okay and hung up. That really pissed me off and got me very upset. I was crying at the time while telling nan and mom what happened and then got really mad because out of everyone in that family, I have been the one to show him the most respect and patience that last few days and didn't appreciate that and I got up and went to my room and shut the door. That's when it all went crazy.
Nan was upset because I was upset and then his mom called saying that she had told him not to call and to just talk with me in the morning but that D1 took the phone and ran off to call me. Then nan made the mistake by saying that she was embarassed because of the behaviour and it being around mom and me. Well that then set my cousin off as to oh they are embarasements now and just on and on. Nan talked to my cousin and D1 and then my cousin hung up. Mom then called to talk to my cousin and said basically that she was sitting right there and heard the entire thing and no one was yelled at but yes I asked D1 to pick one thing to focus on and that he has been asked many times. Mom then goes on to tell her that we have been watching the show since it came on and that I would have really liked to see what was happening but I chose to play cards with the kids. My cousin and my mom talked breifly and hung up and then D1 called back to talk to nan and then nan basically snapped and said 'She has a disability too (D1 saying that I don't) yes she does, and a lot worse of one than you have, did you ever think of that?' and then he was told that there would be no more phone calls that night and surprisingly they listened to it. As a side note I should say that my bedroom up there, the window looks right across the small parking lot (3 card lengths total between doors) and I could hear a LOT of screaming going on during the time of these phone calls as well as after.
Nan was upset at all this but mom held her ground surprisingly. She told my nan that I had spent many hours alone those few days talking with D1 and that I always showed him respect. She said she was upset about it as well because it upset me and I don't take those situations easily with my health problems. She went on that the part that no one was saying was the worst part. D1 is a child and I am an adult and under no situation at all should a child talk to an adult like that. That D1 honestly has no respect for adults and should never been allowed to say anything along that line what-so-ever. However the next day was, in a way, worse. D1 apologized to me and gave me a hug and I told him that he had really hurt my feelings and that I probably wouldn't be playing games with him for a while. My cousin however never emerged the next day at all. When the kids came over they told nan she was in bed. We sent the kids home for supper as mom was taking nan, K and I out for her birthday supper and my nan sent food over for the kids to eat for supper. She later called around 8:30 and talked to mom breifly to say that she probably wouldn't see us before we left the next day and that she was going to go to bed now as she wasn't feeling well. However, D1 later told me (not knowing what his mom had told my mom) that she was up watching TV that night.
We didn't leave the city until almost 11am and still there was no sight of her at all. That was really worrying my mom and I as we both caught glimpses of how she was when she was taking opiods. She was really shouting in her talking, just really loud, she was slurring her words a lot, anytime we heard from her it was she 'was going to lie down for a bit' or 'I have to go have a nap' or 'im going to bed early' which when she was really deep in her addiction you never saw her out of bed. She was also slightly paranoid and just really off. It scares us because she has no motivation at all to get off of methadone and until she realizes that she is on the med for drug abuse and not for pain control, nothing is going to change. Mom and I both sensed that she is back on some other drug again or has managed to get her methadone doseage increased, either way not a good thing at all. She thinks we are all attacking her but all we want her to do is to get some serious help and get better before she does serious harm to her children (they are already showing signs of mental problems involving their mom).
Well I downloaded those games and then went searching in the App Store to see what else there was. After a lot of looking and drooling over Apps and songs that I would love to have, on July 2nd I went in to town and bought myself an iPod as well (July 1st was Canada day so all the stores were closed). I have already downloaded a few CD's, a bunch of games, a bunch of really cool medical type applications and lots more :) So K and I have both been pretty much glued to our iPod's the last few weeks.
As for the 'vacation', it was really only my mom, K and I going up to visit my grandmother and some other family. My one cousin has some serious issues that she needs to work out for herself as she is really getting not only herself, but the entire family up there, into problems and just way too much drama. My grandmother is so stressed out that we are all worried that the issues that my cousin is going through is going to end up giving my grandmother another heartattack or other serious health complication. And of course somehow I got roped into the drama and feeling so guilty myself and feeling so horrible that something I did innocently caused a big scene and a lot of yelling and crying.
As a bit of a back story, one of my cousin's has two children, both boys: D1 is 13 (he has ADHD and is on medications because of this) and D2 is 10. While I was growing up we always played this one game of cards (not sure where it came from as I have heard no one else that has played any type or version of this game) basically on most nights the entire family is together. We got out of that as my generation got older and while K's generation was too young. Well D1 loves to play games and had been asking relentlessly for a few days to play a game of cards. I managed to get my mom to agree to play (more on that part later) and she was too 'tired' but myself, K, D1, D2 and their mom all sat down to play this game. We were playing cards while 'America's Got Talent' was on and I gave up watching the show to play the card game
We hadn't all even sat down yet when D1 said he would be right back. He comes back to the house with a drumstick and some chips and sat back down to play cards. I wasn't too pleased about this as I had been telling K that if he wanted some of the taffy I bought him, and the boys were around, he would have to offer to share his candy. To be telling him this and then to have D1 bring over not one, but two treats didn't leave me too impressed. After that something else came up with him running home to get his own pennies (we 'gamble' with pennies in the game) instead of just using some of his moms. A few times while we were playing I had to ask Kyler to pay attention to the game instead of watching the show and asked D1 and D2 a few times as well. I had got up to get myself some Doritos and D1 was again relentless in asking for some. I pointed out that he had already had some of his own but then gave in and told him that when I opened the bag I would give him some. I had just opened the bag and it was my turn to shuffle and deal. While doing this he asks again for chips and I asked him if it looked like I was busy doing something (yes) and that maybe he should wait until I am not busy to ask. After I was done dealing I poured him a bowl of chips. After a good half hour or so of having to repeatidly ask D1 to pay attention to the game I finally said "D1 are you playing this game or watching TV, you can not do both" and he mumbled and got back to the game. We finished up shortly after and all just kept our 'winnings' out so we could play the next day. I thought it was a good night and had enjoyed playing a game with the kids.
About 30 minutes after they all left (My nan and both of my cousins and their familes all live in the same small townhouse complex that is maybe half a block big in total, so it takes about 30 seconds to get from one place to the other) Kyler and I were cuddling on the couch and watching the news (this was while William and Catherine were in Canada and my nan was just fixed on the news). Nan answers it and then tells me that the phone is for me. I answer it and it is D1 informing me that I had really hurt him and that K isn't the only one with a disability, he has one too and can't focus on things and it wasn't fair to call him out and on and on about how hurt he was and his disability. I calmly told him that he had been bugging us for 2 hours to play the game, we agreed to play it because of him and that I didn't yell at him or get mad at him I simply asked him to choose between watching the television show or playing the card game. He mumbled okay and hung up. That really pissed me off and got me very upset. I was crying at the time while telling nan and mom what happened and then got really mad because out of everyone in that family, I have been the one to show him the most respect and patience that last few days and didn't appreciate that and I got up and went to my room and shut the door. That's when it all went crazy.
Nan was upset because I was upset and then his mom called saying that she had told him not to call and to just talk with me in the morning but that D1 took the phone and ran off to call me. Then nan made the mistake by saying that she was embarassed because of the behaviour and it being around mom and me. Well that then set my cousin off as to oh they are embarasements now and just on and on. Nan talked to my cousin and D1 and then my cousin hung up. Mom then called to talk to my cousin and said basically that she was sitting right there and heard the entire thing and no one was yelled at but yes I asked D1 to pick one thing to focus on and that he has been asked many times. Mom then goes on to tell her that we have been watching the show since it came on and that I would have really liked to see what was happening but I chose to play cards with the kids. My cousin and my mom talked breifly and hung up and then D1 called back to talk to nan and then nan basically snapped and said 'She has a disability too (D1 saying that I don't) yes she does, and a lot worse of one than you have, did you ever think of that?' and then he was told that there would be no more phone calls that night and surprisingly they listened to it. As a side note I should say that my bedroom up there, the window looks right across the small parking lot (3 card lengths total between doors) and I could hear a LOT of screaming going on during the time of these phone calls as well as after.
Nan was upset at all this but mom held her ground surprisingly. She told my nan that I had spent many hours alone those few days talking with D1 and that I always showed him respect. She said she was upset about it as well because it upset me and I don't take those situations easily with my health problems. She went on that the part that no one was saying was the worst part. D1 is a child and I am an adult and under no situation at all should a child talk to an adult like that. That D1 honestly has no respect for adults and should never been allowed to say anything along that line what-so-ever. However the next day was, in a way, worse. D1 apologized to me and gave me a hug and I told him that he had really hurt my feelings and that I probably wouldn't be playing games with him for a while. My cousin however never emerged the next day at all. When the kids came over they told nan she was in bed. We sent the kids home for supper as mom was taking nan, K and I out for her birthday supper and my nan sent food over for the kids to eat for supper. She later called around 8:30 and talked to mom breifly to say that she probably wouldn't see us before we left the next day and that she was going to go to bed now as she wasn't feeling well. However, D1 later told me (not knowing what his mom had told my mom) that she was up watching TV that night.
We didn't leave the city until almost 11am and still there was no sight of her at all. That was really worrying my mom and I as we both caught glimpses of how she was when she was taking opiods. She was really shouting in her talking, just really loud, she was slurring her words a lot, anytime we heard from her it was she 'was going to lie down for a bit' or 'I have to go have a nap' or 'im going to bed early' which when she was really deep in her addiction you never saw her out of bed. She was also slightly paranoid and just really off. It scares us because she has no motivation at all to get off of methadone and until she realizes that she is on the med for drug abuse and not for pain control, nothing is going to change. Mom and I both sensed that she is back on some other drug again or has managed to get her methadone doseage increased, either way not a good thing at all. She thinks we are all attacking her but all we want her to do is to get some serious help and get better before she does serious harm to her children (they are already showing signs of mental problems involving their mom).
Friday, June 24, 2011
Updates are done - as well as a new update lol
Well I have finally got all the posts up that I needed to do (I think I did at least) and believe I am now caught up. For those of you who have been trying to follow this but got confused I apologize. I had a lot of different topics that I wanted to blog about, if only so I have it as a 'record' for myself and to also try to explain why I have been quiet for so long. So, I wrote seven posts over the last few days to update on all that has been going on. I will list those seven along with a link to get to that post, and they will then be in order as I did not write them in any particular order. Here they go:
My nephews doctor's appointment regarding learning difficulties and how we can help him
My own doctor's appointment with my GP and what we learned and decided to do
The report that my internist / cardiologist wrote up and sent to my GP (who then gave it to me)
A great K moment, by his amazingly proud Auntie (Note: We got his grade back and he got a B+!!!)
K's 9.5th Birthday Party
An unsettling conversation with my brother
Reply from a letter that I send to a very informed EDS trained Doctor
And those are the entries that took me forever to finally finish but I believe each one of those entries are important and needed me to tell about for some reason or another. Now on to the current update :)
The increasing of the elavil is kicking my butt! When I started on it years ago most doctor's were shocked as it did not make me tired at all and did not contribute to a good sleep. Apparently I fell into the 5% of people who do not get tired from it. Well adding this itty bitty little bit extra (I was on 100mg, now up to 110mg) is making be absolutly exhausted! All I want to do is sleep, I can sleep for 12 hours a night and be ready for a nap just two hours after I wake up! I do know however that when I started this medication my health and body were not as badly affected by the EDS where nows there has been a lot of changes. It has only been a week and I know I have to give it plenty of time for my body to adjust to it so going to give it another week at minimum, probably more like a full month before I decide anything. I just want these headaches gone!!
Been having more and more joint issues. My right shoulder has been really acting up lately. I went back to taking the neurontin twice a day instead of once a day as the burning nerve pain was getting way out of hand. Unfortunatly the increase hasn't seemed to help too much. I now basically have that burning pain 24/7. I am honestly a little nervous putting ice or heat on it as I am not sure how good the skin is there and I don't want to end up doing more damage than there already is. Add to this I am now also getting basic pain. If I try to reach in front of me to get something (like sitting on my couch and reaching forward to get a drink) I get a horrible stabbing pain right into my back that sends enough of a jolt through me that I have already been modifying stuff to stop this even though it's not been that long. And then add the basic 'tired' feeling and you have a really great shoulder pain trifecta!
My hip is also causing issues. Last night I went to bed and read for a while. When I tried to roll over to turn the light out I got a shooting pain into my hip area that took my breath away. I then noticed that the way I was laying, my left foot was in the position that the entire arch side was right on the bed so I had my entire leg turned a little over quarter of the way in. I finally managed to get the leg to go straight only to find that I could now no longer bend my leg. It got to the point that I almost called my mom upstairs to come down to help me. However, after a dose of advil and breakthrough meds as well as the warm waterbed and me gently massaging the area and I could move again. It is defintly not something I want to experience again that is for sure!!!!
As I mentioned in one of the posts, I only noticed tonight that I have a positive ANA factor on my recent round of bloodwork. I had mistakenly thought that the 'Postive' was part of the C-Reactive Protein test until I looked further. At this point I honestly don't know what to think. Going to google for a while and let it sink in and will post soon about where I am at and what my plans for the future, medically at least, are.
My nephews doctor's appointment regarding learning difficulties and how we can help him
My own doctor's appointment with my GP and what we learned and decided to do
The report that my internist / cardiologist wrote up and sent to my GP (who then gave it to me)
A great K moment, by his amazingly proud Auntie (Note: We got his grade back and he got a B+!!!)
K's 9.5th Birthday Party
An unsettling conversation with my brother
Reply from a letter that I send to a very informed EDS trained Doctor
And those are the entries that took me forever to finally finish but I believe each one of those entries are important and needed me to tell about for some reason or another. Now on to the current update :)
The increasing of the elavil is kicking my butt! When I started on it years ago most doctor's were shocked as it did not make me tired at all and did not contribute to a good sleep. Apparently I fell into the 5% of people who do not get tired from it. Well adding this itty bitty little bit extra (I was on 100mg, now up to 110mg) is making be absolutly exhausted! All I want to do is sleep, I can sleep for 12 hours a night and be ready for a nap just two hours after I wake up! I do know however that when I started this medication my health and body were not as badly affected by the EDS where nows there has been a lot of changes. It has only been a week and I know I have to give it plenty of time for my body to adjust to it so going to give it another week at minimum, probably more like a full month before I decide anything. I just want these headaches gone!!
Been having more and more joint issues. My right shoulder has been really acting up lately. I went back to taking the neurontin twice a day instead of once a day as the burning nerve pain was getting way out of hand. Unfortunatly the increase hasn't seemed to help too much. I now basically have that burning pain 24/7. I am honestly a little nervous putting ice or heat on it as I am not sure how good the skin is there and I don't want to end up doing more damage than there already is. Add to this I am now also getting basic pain. If I try to reach in front of me to get something (like sitting on my couch and reaching forward to get a drink) I get a horrible stabbing pain right into my back that sends enough of a jolt through me that I have already been modifying stuff to stop this even though it's not been that long. And then add the basic 'tired' feeling and you have a really great shoulder pain trifecta!
My hip is also causing issues. Last night I went to bed and read for a while. When I tried to roll over to turn the light out I got a shooting pain into my hip area that took my breath away. I then noticed that the way I was laying, my left foot was in the position that the entire arch side was right on the bed so I had my entire leg turned a little over quarter of the way in. I finally managed to get the leg to go straight only to find that I could now no longer bend my leg. It got to the point that I almost called my mom upstairs to come down to help me. However, after a dose of advil and breakthrough meds as well as the warm waterbed and me gently massaging the area and I could move again. It is defintly not something I want to experience again that is for sure!!!!
As I mentioned in one of the posts, I only noticed tonight that I have a positive ANA factor on my recent round of bloodwork. I had mistakenly thought that the 'Postive' was part of the C-Reactive Protein test until I looked further. At this point I honestly don't know what to think. Going to google for a while and let it sink in and will post soon about where I am at and what my plans for the future, medically at least, are.
Tuesday, June 21, 2011
Letter from EDS Doctor
So following getting the bloodwork results from my doctor I got thinking. I was thinking that I always thought that C-Reactive Protein was a test about inflamation. So I get on google and search for it and find out that yes, it tests for inflamation. I then get thinking because I was sure that EDS was a non-inflamatory condition. So I start searching for C-Reactive Protein (CRP for the purpose of this post!) and EDS and can only come up with people that have the vascular type having elevated CRP. I also start realizing that CRP can also be a test for autoimmune conditions. My rheumy suspects I have some type of autoimmune disorder but doesnt know which one, if any. My rheumatoid factor and ANA have always come back negative (except for this latest batch which I just noticed when typing up the post about my dr's appointment :S) so it has never been pushed farther. With no idea what could be causing the elevation and wondering if EDS actually would cause elevation, I got on facebook and sent a breif letter to an EDS doctor that is on there and who provides answers and help to those who ask it. So basically I asked if EDS would cause the elevated CRP or if we should be looking into auto-immune. Imagine my shock when only a few days later I get a reply!!
His advice is that it is not usually elevated in EDS but there are many reasons for it. He suggests waiting a month and then redoing the tests to see what those values are and if it is still elevated for me to follow-up with my rheumatologist.
So the plan is that I will call my GP's office (have to make a call there anyways) and ask for that bloodwork (and the ANA now that I noticed it is positive!) to be done again to see what those values are and then go in and talk with my GP about them as my Rheumy is still not back and most peolpe are saying that he probably won't be coming back :(
* Looking at the bloodwork sheet, my GP highlighted two numbers and the CRP test name so I figured that the number and the 'positive' both went with the CRP until I took a better look at it tonight to write up the entry I did about my dr's visit outcome.
His advice is that it is not usually elevated in EDS but there are many reasons for it. He suggests waiting a month and then redoing the tests to see what those values are and if it is still elevated for me to follow-up with my rheumatologist.
So the plan is that I will call my GP's office (have to make a call there anyways) and ask for that bloodwork (and the ANA now that I noticed it is positive!) to be done again to see what those values are and then go in and talk with my GP about them as my Rheumy is still not back and most peolpe are saying that he probably won't be coming back :(
* Looking at the bloodwork sheet, my GP highlighted two numbers and the CRP test name so I figured that the number and the 'positive' both went with the CRP until I took a better look at it tonight to write up the entry I did about my dr's visit outcome.
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