At first I responded that before it was more difficult because I remember how scared I was not knowing what was wrong. You know something is wrong because it affected every area of my life- every area on a daily basis. How do you put a name on something that doctors aren't sure of? The gazillion tests they run, all normal except CRP and Sed Rate. You feel like shit, a million thoughts running through your mind of what it could possibly be, the Googling your symptoms (yes I was one of those people even though I disliked the people who came into the clinic telling me what they had because they Googled it), the overall just not knowing...
It wasn't even the simple not knowing like What's for dinner tonight? What's your next project going to be? It was the How much longer do you have to live? Is my body going to shit out before we find out what's wrong? What are my loved ones going to do without me?
Then I pondered over the question and decided it was a trick question because to me, the answer is both are bad.
Once you get your diagnosis, you're happy it's finally been given. What no one prepares you for is the fact that it's still going to affect your life in every possible way, usually worse than before due to new symptoms. (At least in my life it has) Yes, there are those lucky enough to continue working, find a combo of meds that work or at least make their life somewhat livable. Then there are those of us who try meds without success, are bed bound many days, have new symptoms spring up, etc. - I could go on and on and frickin' on... Someone (you know who you are ;) ) recently explained it as a hamster wheel and that really sums it up well. You are in and out of the ER, doctors visits, etc.- it's a never ending cycle that's destined to repeat itself with you as the star hamster.
So yeah, tricky question...
Today I have the pleasure of seeing a vascular specialist at Abbott Hospital in Minneapolis. This is probably long overdue. For the past month I've been having left arm pain that came out of nowhere and ranges from a dull ache in the entire arm to straight out painful throbbing. After an ER visit, a normal doctor visit, they have ruled out a blood clot or muscle issue. The last doctor I saw said it's probably something vascular related to my Behcet's- he was stumped as he's never had someone with this quite this issue. Imagine that, my body stumping another doctor. Freak of nature my good ol' body is. Thank you body of mine ;)
With that, I'm off.
UPDATE: The vascular doctor I saw was very nice, knew about Behcet's- he's from Turkey. Long story short, I'm in for more testing most likely- he says it's either neuropathy or something related to the Behcet's because it responded to prednisone, either way it's to neurology or my rheumy and if they can't figure it out I will be asking for a referral to the Mayo clinic. I don't think I ever spoke about my experience with the Mayo. When I first got sick after two shitty rheumatologists I thought perhaps if I went to the Mayo they would know what's going on- they are the best right? My PCP referred me but they just don't accept you, they enter your symptoms into a computer and you have to see what department they recommend first and they will refer you on to the correct department once they rule out everything. I wasn't as sick at first and had limited symptoms so they suggested I see infectious disease first. I had just had 12 tubes of blood drawn plus the gazillion other tests so I was not happy with their answer. Plus at this point my first rheumatologist had said it was atypical Behcet's. I decided not to follow through because it is a far drive for me and I just didn't want to be a guinea pig anymore. My friend says the Mayo is really awesome and they were super nice when I went to visit her, so hoping my experience this time around (if it comes to that) will be much better. Most days however, I just wish my body would behave and fix itself instead of attack itself.
“Better never means better for everyone... It always means worse, for some.” ~ Margaret Atwood
Ha, ran across this one too.
"Yes, life could be better. But it could also be worse. Don’t believe me? Allow me introduce you to my mother-in-law. ” ~ Jarod Kintz
Hi Chrissy, woohoo luckily I joined that 15k club with you! Never even heard of Behcet's till last month but I'm still convinced someone has a voodoo doll out there with a lock of my hair on it's head :).
ReplyDeleteNow the serious stuff... I get something similar to what you described with your arm dull ache/stabbing kind of like my headaches. Never had any complications other then massive pain stopping me in my tracks, low dose of prendisone for 30 days (I'm on Rayos now) put's it in remission for me. I may have not had a legit diagnosis from the time i was 20 to 31 but i did find out I would swap the sprinkles on my ice cream with prendisone. :D
Steve
nice article… simple and useful :)
ReplyDeleteTOSHIBA PVM-375AT