Saturday, January 28, 2012

answers are sometimes not what you actually want...

So I went to the rheumatologist yesterday and I LOVED him. He is very young (literally the same age as me basically) and so he is up to date on everything and still passionate because he is not burnt out yet. Basically, everyone at the office was super nice from the check in person to the nurse to the lab people to everyone...especially the doctor. I have seen my fair share of doctors (see last blog post) and the only doctor I've ever really liked a whole lot is Dr. Brown who was my general physician in Salisbury. I didn't like him all the time though, at the beginning he was like all the others and didn't believe me and blah blah...but once he believed me he was like my best friend. He really tried hard to help me, he never didn't believe me about anything again, he trusted what I told him I was feeling and what I thought I needed to do for me, and backed me up when he wanted me to quit and I wanted to keep working. He supported me and you could tell he truly cared for me. One of the reasons leaving Salisbury was so hard was because I couldn't believe I would find another doctor quite as amazing as Dr. Brown. I may have come close yesterday though.

I mentioned to the nurse yesterday (when she mentioned my blood pressure was sky rocket high which is really abnormal for me since it is usually near rock bottom) I was nervous about the appointment...which is also a little abnormal for me because I've basically done nothing for the past 2 years but go from doctor to doctor and test after test. But when he came in and asked me why I was scared to be there and I told him I wasn't nervous about tests or anything but that I was scared he wouldn't believe me. I gave a little of my background and how I had not been at all supported by the majority of my dr's and I just wanted someone to believe me and figure out what was wrong with me. He assured me that he would believe everything I told him unless I gave him a reason not to and that I could ask questions at any time and he would figure out what was wrong with me. At first, I didn't care what was wrong with me, I just wanted answers. Well, after spending 2 hours with me (yes a specialist that spent 2 hours with me in one appointment...unheard of I know)...I got answers. And let me tell you, I'm so grateful that I was eating dinner and hanging out with my small group last night because it helped me not think about it last night, because know I am getting pretty upset about it.

So we knew I had celiac, we knew I had ulcerative colitis, orthostatic hypotension, and we knew that I had tons of symptoms of some pretty other nasty chronic illnesses. But they weren't officially diagnosed. I found out yesterday officially that I have fibromyalgia, which is not autoimmune but is very common in people with automimmune disorders (which celiac is). I have known that I had fibromyalgia in my gut for a while, but honestly I was really hoping and praying I didn't have it. It is just another chronic illness that I have to deal with that has no cure that I have to deal with for the rest of my life. I have been in intense pain every day for the past 2-5 years and while yes it is nice to be able to say I have this illness, it's not in my head, there is someone who believes me, there is a name for this...I really wish it was something fixable. Something I could just have surgery for and it would be better...something they've missed on one of my MRI's or CT scans. But no, I have fibromyalgia. The only "treatment" he said there is for fibromyalgia is to exercise for 1 hour a day (which I can't do very well because of my other problems) and to sleep for 8 hours a night. There are fibro drugs out there, but he doesn't like medications and he doesn't think the fibro drugs really work. He did give me a med to help my nerves be less stimulated at night to curb the pain some so I can sleep at night and get my 8 hours in.

So after he tells me I have firbo (which is diagnosed by pushing trigger points all over your body and seeing the response to pain from this) he says he's going to do TONS more labs because he thinks I have several other problems too. These range from vitamin b12 and vitamin d deficiency all the way to he is pretty sure I have lupus too. I swear if I have lupus too, I almost want to give up. Literally every body system and organ in my body will have been attacked if I get lupus too. I am so over this. I know I said I wanted answers, but I want cureable, fixable answers. I know I should count my blessings because they aren't saying cancer and I have 3 months to live...but seriously a lifetime of chronic pain all over your entire body...and diseases that attack your organs one by one until they all fail eventually (not that this would happen for a long time, but still faster than healthy people)...and specialized diets...and exercising...and etc etc that I have to deal with already. Why can't I have a cold or the flu? Something that comes for a day or two and then leaves your body alone. My fingers are in so much pain right now from typing I can't even explain that...from typing...and I have that to look forward to for the res of my life. Walking through walmart today almost killed me because there floors are too hard...for the rest of my life I have that to look forward too. But I have a rest of my life to look forward to I guess.

This week in small group the "respectable sins" we studied were ungodliness and unthankfullnes. And let me tell you, the thoughts I have had today are pretty ungodly and unthankful. I am thankful I have an answer, I am just not thankful for the answer. I will get over it though, I always do. When I first started this blog, I talked about how it would be a beautiful, peaceful journey. Right now I feel like I am falling off the edge of a cliff. I am exhausted, irritable, in pain all the time, can barely make it through the school day and still have homework when I get home...but I know it will still be a beautiful journey. I also know that I am thankful that I have met some awesome girls here that I can hang out with to help me stay focused so that I don't get discouraged as easily. Anyways, know both my arms are going numb so I really need to stop have a good night..and I will blog again soon.

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