So I know some of this late news, but I've been slacking on trying to keep this thing updated--too much stuff going on. But, I was supposed to have my surgery on my hip done in Colorado on Oct. 21st. Well,the week before the scheduled surgery, I got a phone call from the doctor's office and they said that we needed to postpone the surgery.
The problem came down to the fact that we haven't been able to run all tests needed to check for the possible adrenal insufficiency, pituitary insufficiency, or thyroid insufficiency. So, as these could all be very dangerous--even fatal--with surgery...in not knowing for sure what we were going in with, the surgery was postponed until we can do the further testing needed.
So, as of now, we had to taper me off the steroid medications and then stay off of them for a few weeks, and finally, on Nov. 19th, I'll go have all my testing done for those things. Then, depending on the results and everything, we'll schedule the surgery.
Friday, October 30, 2009
Tuesday, October 20, 2009
Trip to Seattle...
On October 5th my mom and I flew out to Seattle, WA for a doctor's appointment. This appointment was one we--myself, my family, and all my doctors--have been waiting for and hoping to find answers! This particular doctor is a medical genetics specialist, does testing for ehlers danlos, and is doing research on ehlers danlos. So, this was going to be a big appointment! We figured that he'd be able to do any other testing for other subtypes of ehlers danlos if he thought I may have it, that he'd be able to tell us more about ehlers danlos, and, most of all, that he'd be able to give us some ideas on what to do (especially where my joints seem to be getting so bad so rapidly), what to expect, and help us have some more insight to what is going on with my body.
Well, I think--actually I don't think the correct word is think...it's more like I know--that I got my hopes a little too high because it definitely wasn't what I planned on having happen or what I hoped to hear. In summary, this is basically what the doctor said:
I definitely do have ehlers danlos--the hypermobility type--and it's effecting every single one of my joints (from my head down to my toes). He said he doesn't like to really put people into particular groups, because just like with my ehlers danlos hypermobility, there can be so many different levels of severity--for some people it may just effect their smaller joints more or there larger joints and for some it might just be kind of looser, but he said with me, for example, it's effecting all of the joints. He also said, though, that I have something else going on as well, but the problem is he doesn't know what it is, how to test for it, or what to do. The problem is that not only are my joints unstable (with the ehlers danlos), but when my joints come out my tendons, ligaments, cartilage, and everything ruptures. Most people, he said, with ehlers danlos, when their joints sublux or dislocate it may rupture the surrounding structures once in awhile but mostly they just stretch out (or one joint may rupture the surrounding structures at times but most of the other joints just stretch things out). Anyways...That is not the case with me--for example, just my left hip capsule has torn open about 3 times in the last year! Things tear constantly and easily! Also, when we asked if all of these other health problems that I've been struggling with--the possible adrenal and/or pituitary and/or thyroid insufficiency, possible pseudotumor cerebri, gastrointestinal problems, etc...--are related to the ehlers danlos, the answer was 'no'!
In the end, it just basically came down to these facts, I have the hypermobility type of ehlers danlos, something else is going on but they don't know what it is, I'm already doing everything possible that they know of to help my ehlers danlos, there's nothing else we can do, and I just need to be really careful, LISTEN to my body (when I start getting tired, stop and rest), and try to do some strengthening to help try and let the muscles help stabilize my joints (although in strengthening, I need to be careful so as to not let my joints come out while strengthening).
Anyways...needless to say, I was a bit disappointed after my appointment and having gotten my hopes that this doctor would have answers and be able to help me get/feel better! I cried and sometimes still do...I have good days and bad days! It's just frustrating to wake up some days (today for example), wake up in pain, take my medicine, lay in bed all day, the pain won't go away, I don't know what to do, the doctors don't know what to do, and it's hard! But, between my family, friends, and the Gospel in my life, I know that I can make it through anything!
Finally....My wonderful mom helped to make this trip still very fun and exciting! Since we had lots of other time in our 2 1/2 days besides my doctor's appointment, we went out and had fun! We went to the Space Needle, Pike's Market, to the shops along the pier, to the Old Spaghetti Factory, to two awesome museums--the Science Fiction Museum and the Experience Music Project--to the LDS Seattle Temple, and just sightseeing! It was great!!!
Well, I think--actually I don't think the correct word is think...it's more like I know--that I got my hopes a little too high because it definitely wasn't what I planned on having happen or what I hoped to hear. In summary, this is basically what the doctor said:
I definitely do have ehlers danlos--the hypermobility type--and it's effecting every single one of my joints (from my head down to my toes). He said he doesn't like to really put people into particular groups, because just like with my ehlers danlos hypermobility, there can be so many different levels of severity--for some people it may just effect their smaller joints more or there larger joints and for some it might just be kind of looser, but he said with me, for example, it's effecting all of the joints. He also said, though, that I have something else going on as well, but the problem is he doesn't know what it is, how to test for it, or what to do. The problem is that not only are my joints unstable (with the ehlers danlos), but when my joints come out my tendons, ligaments, cartilage, and everything ruptures. Most people, he said, with ehlers danlos, when their joints sublux or dislocate it may rupture the surrounding structures once in awhile but mostly they just stretch out (or one joint may rupture the surrounding structures at times but most of the other joints just stretch things out). Anyways...That is not the case with me--for example, just my left hip capsule has torn open about 3 times in the last year! Things tear constantly and easily! Also, when we asked if all of these other health problems that I've been struggling with--the possible adrenal and/or pituitary and/or thyroid insufficiency, possible pseudotumor cerebri, gastrointestinal problems, etc...--are related to the ehlers danlos, the answer was 'no'!
In the end, it just basically came down to these facts, I have the hypermobility type of ehlers danlos, something else is going on but they don't know what it is, I'm already doing everything possible that they know of to help my ehlers danlos, there's nothing else we can do, and I just need to be really careful, LISTEN to my body (when I start getting tired, stop and rest), and try to do some strengthening to help try and let the muscles help stabilize my joints (although in strengthening, I need to be careful so as to not let my joints come out while strengthening).
Anyways...needless to say, I was a bit disappointed after my appointment and having gotten my hopes that this doctor would have answers and be able to help me get/feel better! I cried and sometimes still do...I have good days and bad days! It's just frustrating to wake up some days (today for example), wake up in pain, take my medicine, lay in bed all day, the pain won't go away, I don't know what to do, the doctors don't know what to do, and it's hard! But, between my family, friends, and the Gospel in my life, I know that I can make it through anything!
Finally....My wonderful mom helped to make this trip still very fun and exciting! Since we had lots of other time in our 2 1/2 days besides my doctor's appointment, we went out and had fun! We went to the Space Needle, Pike's Market, to the shops along the pier, to the Old Spaghetti Factory, to two awesome museums--the Science Fiction Museum and the Experience Music Project--to the LDS Seattle Temple, and just sightseeing! It was great!!!
It's Been Awhile...
Sorry it's been awhile since I've posted...SO much has been going on and has happened. So, rather than have just one HUGE post, I'll make a few different posts that will explain the various things. I don't know if I'll get them all done today, but I will definitely catch you up to date over the next couple days. Hope you are each doing well!
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