Not much going on except I now have a cold, after the flu, after some infection that turned my finger purple & twice it's size. We also have bed bugs in our house, they eluded me for a long while & they are disgusting. Getting them treated next week... For a small fortune.
I am going back to my primary next week & going to ask her for a second opinion from a rheumatologist & see what she says. Still don't have my aquatic therapy referral, pretty disappointing it takes so long for something so simple. I have learned to keep my expectations low lately, not as many choices here for doctors. Oh well, I have suffered all my life, why stop now!?!
Feeling pretty terrible this week & this weekend we have to clear the attice for the bed bug treatment :(. Going to be SUPER sore after that...
E-bates
Friday, March 27, 2015
Tuesday, March 24, 2015
Tired of being lied to...
I never claimed to have proper grammar, btw. I have had too many head injuries & have spelling issues now, so I do my best...
I was allotted an hour at the rheumatologist, but got less, of course. He brought out a little piece of paper that listed the Beighton scoring & I score a 7/9 as always. He verbally told me EDS type III. On my paper & my chart it now says "hypermobility of joint" not even jointS!!! Not even hypermobility syndrome or whatever else they want to call it. He also put fibromyalgia. What makes me even more upset is the fibro was added after I life, it is not on my summary, just online. He lied to me basically, typical!
He told me to exercise & gave me an anti-depressant medication... this sounds all too familiar... at least it's not an hour of weight training like crazy lady told me to do.
Like I said, I did not have high hopes. One day when they do figure out how to diagnose EDS III using genetics, I would really like to pay a few previous doctors a visit. Maybe I can make a bunch of custom balloons that say "you were wrong" or "Thanks for the misdiagnosis." Maybe a cake with my genetic results on it... I have some time to think about it.
I had to drive almost a state over to find out nothing. I am achy, tired, sore, popping, and now aggravated. Didn't give me an answer for why my finger swelled & turned purple. Didn't run any new tests because the ones from last year were ok with him & the one's last month while I was on steroids are apparently also good enough.
Medical bills, time, energy, gas, etc all wasted, that's how I feel. I have a follow up appointment with him, but doubt I will keep it. I don't know if I should even bother going back to my regular doctor. I guess I will get my referrals for therapy & just be done with this. I might as well go back on the other insurance & stop wasting all this money.
I was allotted an hour at the rheumatologist, but got less, of course. He brought out a little piece of paper that listed the Beighton scoring & I score a 7/9 as always. He verbally told me EDS type III. On my paper & my chart it now says "hypermobility of joint" not even jointS!!! Not even hypermobility syndrome or whatever else they want to call it. He also put fibromyalgia. What makes me even more upset is the fibro was added after I life, it is not on my summary, just online. He lied to me basically, typical!
He told me to exercise & gave me an anti-depressant medication... this sounds all too familiar... at least it's not an hour of weight training like crazy lady told me to do.
Like I said, I did not have high hopes. One day when they do figure out how to diagnose EDS III using genetics, I would really like to pay a few previous doctors a visit. Maybe I can make a bunch of custom balloons that say "you were wrong" or "Thanks for the misdiagnosis." Maybe a cake with my genetic results on it... I have some time to think about it.
I had to drive almost a state over to find out nothing. I am achy, tired, sore, popping, and now aggravated. Didn't give me an answer for why my finger swelled & turned purple. Didn't run any new tests because the ones from last year were ok with him & the one's last month while I was on steroids are apparently also good enough.
Medical bills, time, energy, gas, etc all wasted, that's how I feel. I have a follow up appointment with him, but doubt I will keep it. I don't know if I should even bother going back to my regular doctor. I guess I will get my referrals for therapy & just be done with this. I might as well go back on the other insurance & stop wasting all this money.
Anxiety over rheumatology appointment today
I have anxiety over everything...
My appt with my new rheumy isn't for a few hours. I don't have much in terms of expectations because I am highly doubtful I have any other conditions that would require him. The last one I saw, about a year ago, said he would not send me for any further testing to determine EDS type. He said it's all the same & won't change anything. He gave me Cymbalta & said that was all he could do for me.
I won't even start on how that medication affected me, except that I only lasted a few days on it & the withdrawals were just as horrible! I also took Lyrica, in the past, another one that I just could not tolerate. I have been trying more natural remedies, things like essential oils & making my own daily products naturally; has not been helping unfortunately.
I asked my orthopedic doctor for a referral to aquatic therapy, he said he doesn't think it will help & that I need to do regular PT to strengthen my muscles around my knees. I have done PT many times & I always end up in pain & stop going. Well, the place he sent me to is not a provider. I checked my insurance account online & it changed to another facility, that I did not see aquatic therapy offered. Then a 3rd place popped up instead. It was the same place I went before, that he sent me in December & I never went. They don't offer aquatic therapy either. I called my insurance to get it changed & they said they can't change it. I was very upset, I said you had changed it twice already & now you can't????
Luckily I got an e-mail reply from my ortho office saying they had changed it to the place I requested. I don't know what I should do or who to see really. But I have to start somewhere & my thought is that aquatic therapy will be a good start & shouldn't hurt me enough to cause me to stop, like PT always has. This facility also offers physiatry, I am curious about that. I am also asking for the hand therapy place.
I feel like that's about all I can do. Bracing, low impact exercise, specialists. Now that I have changed my insurance & have more choices & freedom, I think I need more people that specialize in specific parts of the body. It seems like pills don't bring much benefit for me. I am on temazepam for my TMJ disorder, temporarily, to help me relax at night. I still have pain, so I don't think it is helping much. The one difference I have noticed is that I am dreaming. I have had multiple head injuries & lately, for a few months, I have either not been dreaming or not remembering at all upon awaking. So it is interesting to be dreaming again.
My appt with my new rheumy isn't for a few hours. I don't have much in terms of expectations because I am highly doubtful I have any other conditions that would require him. The last one I saw, about a year ago, said he would not send me for any further testing to determine EDS type. He said it's all the same & won't change anything. He gave me Cymbalta & said that was all he could do for me.
I won't even start on how that medication affected me, except that I only lasted a few days on it & the withdrawals were just as horrible! I also took Lyrica, in the past, another one that I just could not tolerate. I have been trying more natural remedies, things like essential oils & making my own daily products naturally; has not been helping unfortunately.
I asked my orthopedic doctor for a referral to aquatic therapy, he said he doesn't think it will help & that I need to do regular PT to strengthen my muscles around my knees. I have done PT many times & I always end up in pain & stop going. Well, the place he sent me to is not a provider. I checked my insurance account online & it changed to another facility, that I did not see aquatic therapy offered. Then a 3rd place popped up instead. It was the same place I went before, that he sent me in December & I never went. They don't offer aquatic therapy either. I called my insurance to get it changed & they said they can't change it. I was very upset, I said you had changed it twice already & now you can't????
Luckily I got an e-mail reply from my ortho office saying they had changed it to the place I requested. I don't know what I should do or who to see really. But I have to start somewhere & my thought is that aquatic therapy will be a good start & shouldn't hurt me enough to cause me to stop, like PT always has. This facility also offers physiatry, I am curious about that. I am also asking for the hand therapy place.
I feel like that's about all I can do. Bracing, low impact exercise, specialists. Now that I have changed my insurance & have more choices & freedom, I think I need more people that specialize in specific parts of the body. It seems like pills don't bring much benefit for me. I am on temazepam for my TMJ disorder, temporarily, to help me relax at night. I still have pain, so I don't think it is helping much. The one difference I have noticed is that I am dreaming. I have had multiple head injuries & lately, for a few months, I have either not been dreaming or not remembering at all upon awaking. So it is interesting to be dreaming again.
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| I used to lock both my thumbs like this is middle school, during typing class, just to mess with my teachers. Something must be going on with my right hand because I can't do it to that thumb anymore |
Monday, March 23, 2015
I guess I should have started this sooner
Hello all you zebras! Or maybe you are here because you were searching to learn more about EDS, Ehlers-Danlos Syndrome?
I have unsuccessfully blogged about a few things... crafts, wrestling, vegetarian recipes, etc...
I thought maybe I should blog about something I am more familiar with since I have lived with it for over 3 decades!
I still have yet to get a diagnosis of what type of EDS I have. Back in 2004 I saw an orthopedic doctor that later called me at home asking if I had ever heard of Marfan syndrome. He called me a loose jointed gal & told me to avoid sports & be careful...
I ended up going to a doctor in genetics at the university & being told I do not have Marfan syndrome, but may have a type of EDS. I had knee surgery on my right knee that year, while I was under my doctor hyper-extended my knee 15 degrees, cleaned up my knee & I was off! About a month later, after the swelling, it went back to how it was before the surgery.
I can sublux everything except my elbows. I can dislocate my patellas. I was told by previous doctors that I have arthritis & need surgery. We just moved & now that I see an honest doctor. He told me that I am not a good candidate for surgery because of my connective tissue disorder. He said my right patella can move 4 quadrants & he stopped because it showed no sign of stopping. I have never been told that before, never said that in my records. In fact, the doctor that wanted to do a lateral release (DON'T DO THAT BTW!!!) on me said I have normal stability & ROM.... obviously I never went back to that quack!
I wish I could say that I have found things that help, but I have not. I am allergic to SO many medications. I have adverse reactions to even more. I have done PT SO many times to no avail! I have been told I just have fibromyalgia. I was also sent to behavioral health for dietary counseling & weight management. I am 5'7" and 135 lbs... she asked why the heak I was sent there?!? But she proceeded to tell me that I should be weight training for an hour daily.... I think she was trying to kill me or severely injure me... and of course, she had no idea what EDS is or what it causes.
I hope to learn more & find some relief. I am looking in to getting finger splints and apparently doing PT again... although trying to get in somewhere else, insurance is NOT helping me there! I feel like I am constantly searching online for validation or answers to what is happening. I never find anything more than what I already know. I really hope the EDS clinic that opened in Maryland last year will find answers, share what they learn with doctors & find a better way to diagnose EDS, especially type III. I hope awareness will spread, especially in the medical community. I am REALLY tired of hearing nurses & doctors say "I have no idea what EDS is" or "I heard of it, but don't remember anything, never seen it."
I have unsuccessfully blogged about a few things... crafts, wrestling, vegetarian recipes, etc...
I thought maybe I should blog about something I am more familiar with since I have lived with it for over 3 decades!
I still have yet to get a diagnosis of what type of EDS I have. Back in 2004 I saw an orthopedic doctor that later called me at home asking if I had ever heard of Marfan syndrome. He called me a loose jointed gal & told me to avoid sports & be careful...
I ended up going to a doctor in genetics at the university & being told I do not have Marfan syndrome, but may have a type of EDS. I had knee surgery on my right knee that year, while I was under my doctor hyper-extended my knee 15 degrees, cleaned up my knee & I was off! About a month later, after the swelling, it went back to how it was before the surgery.
I can sublux everything except my elbows. I can dislocate my patellas. I was told by previous doctors that I have arthritis & need surgery. We just moved & now that I see an honest doctor. He told me that I am not a good candidate for surgery because of my connective tissue disorder. He said my right patella can move 4 quadrants & he stopped because it showed no sign of stopping. I have never been told that before, never said that in my records. In fact, the doctor that wanted to do a lateral release (DON'T DO THAT BTW!!!) on me said I have normal stability & ROM.... obviously I never went back to that quack!
I wish I could say that I have found things that help, but I have not. I am allergic to SO many medications. I have adverse reactions to even more. I have done PT SO many times to no avail! I have been told I just have fibromyalgia. I was also sent to behavioral health for dietary counseling & weight management. I am 5'7" and 135 lbs... she asked why the heak I was sent there?!? But she proceeded to tell me that I should be weight training for an hour daily.... I think she was trying to kill me or severely injure me... and of course, she had no idea what EDS is or what it causes.
I hope to learn more & find some relief. I am looking in to getting finger splints and apparently doing PT again... although trying to get in somewhere else, insurance is NOT helping me there! I feel like I am constantly searching online for validation or answers to what is happening. I never find anything more than what I already know. I really hope the EDS clinic that opened in Maryland last year will find answers, share what they learn with doctors & find a better way to diagnose EDS, especially type III. I hope awareness will spread, especially in the medical community. I am REALLY tired of hearing nurses & doctors say "I have no idea what EDS is" or "I heard of it, but don't remember anything, never seen it."
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