So, my dreams of making it to February 16th, seeing the infectious disease doc and then getting to start the Humira was dashed. I have a new appointment with him now on March 16th and there is a possibility I will get to start it after that.
I have to tell you, even though I hate waiting, I am so impressed with my doctors and their thoroughness. Dr. Omarro seems to know as much about Humira as Doc Petterson. He asked how long ago I was diagnosed, I said 6 years. He asked if I had ever went 12 months without prednisone: no, I'm on it right now. He said, "then it is time to try this." However, I have already been on Imuran for 3 years, so I have basically no immune system. I take lots of vitamin C and avoid touching others when I can keep from it. Right now, getting sick with a cold, or anything could set back the timeline so I am avoiding pretty much everyone when I can. Tuesday, I got a flu shot, and was told I now needed one every year; I got a tetanus shot and told to get one of those every 5 years. I was tested for Histoplasmosis,Coccidioidomycosis, and Blastomycosis. Apparently these are bacteria that can be found in the area I live. I was tested last week for Hepatitis and TB, both came back negative but this week I was tested to see if I am immune to Hepatitis. If the answer is no, I have to have vaccines for that before I start the Humira. And I was warned that we could jump through all these hoops and start taking the Humira only to find out it doesn't mesh well with my system and I can't take it. Having to be on prednisone yet again right now makes it worth it to me to try. I have lost 11 lbs and gained 16 since the first of the year. That is what prednisone does- and it doesn't matter what I eat, I gain weight. 3 1/2 years ago, I was almost 80 lbs lighter. Not being able to go a year without prednisone has made it impossible to even get a good running start on losing the weight again. Friends of mine who are on Humira say I will feel better, a lot better. I am looking forward to feeling like exercising and being in remission to where I can actually keep something going long enough to see results.
The more I read about Humira, the more I think I should be worried but I am just not. I am just afraid it is not going to work but I am trying to just have faith that it will. You see that thing going around Facebook about the diseases that you don't "look" sick. This is one of them and somehow I think the UC goes hand in hand with type A personalities who are bound and determined not to let this rule them. My doctor is constantly telling me to slow down and this time I actually have. I do feel guilty about it though. I am hoping a few months of "sitting on the bench" pays off here in another month or so. I am trying to hurry and get over the flare I am having ( the worst is over, just can't get it to stay gone without the prednisone yet). I am living for this coming Saturday and a much needed girls day out with friends.
That's where we are at right now. I took Mom for an EEG and MRI of her head yesterday, hopefully we will find some answers for her soon too.
I Reread the above post and feel like it looks like I'm complaining, please don't read it that way. I am not, just trying to get all the facts in one place for friends and family who want to know what is going on. I thank God that I still get to go to work and that I am not in the shape I was 3 years ago. Right now, this seems to be the only health issue I have and compared to what some of my friends are dealing with- this is not a big deal.
Thanks for the prayers though, they are always appreciated!
