That is right folks – I have an official diagnosis!!! No more Meganitis, I have been diagnosed with Stills Disease. Now, all of you are probably saying to yourself, what the heck is Stills disease?
“Adult Still’s disease is a rare type of arthritis that features a sore throat, a salmon-colored rash and a high fever that spikes once or twice a day. Joint pain tends to develop a few weeks after these initial signs and symptoms”
This is a disease that is ruled in once everything else is ruled out. I am also happy to report the Humira that I have been been on for a little over a month is working wonders! It has been such a long road, but it looks like I am finally in a place with a treatment plan.
I was so excited, I had to go tell my mother. Yes, I drove from Boston to her grave to tell her. I mean, I know she knew already , I feel her around me all the time, but I had to go tell her myself. It was my routine , go to Boston , then leave , call my momma. Tell her the good, the bad, the frustrating,the infuriating, just the way I was feeling and what the next step was or what the plan was. It is hard to leave these appointments now and need to call her and know that she will never be on the other end again.
In fact, it blows. Hard.
The reason I chose Brigham and Womens Hospital for my care is because of my mother. For 30 years my mothers surergies, transplants , ( yes transplants, plural) and several of her doctors were all at Brighams. I was very familair with the hospital due to all the visits over the years, and the fact that it is a world renound hospital didn’t hurt either. It was something I trusted due to the fact that my mother was so sick for so long and I feel , besides her larger than life spirit, that this hospital had a part in that .
When I moved a coupl of years ago, we are only about 20 minutes from the hospital, barring traffic. I would go see her during her various stays at the luxurious ” Brigham suites ” as we would call it. It sucked that she was in the hospital butit was closer to me than her home was so, I took it.
Now that I am starting to feel better and have an answer, I owe it to her to Be Better. I need to get back into my routine, which seems like I am forever saying . But I really need to. Need to get some consistncy. I am also anxiously awaitng my sleep study results.
So, onwards and upwards.
I am getting in a much better frame of mind. Trying to figure out who I am , what I want in my life, who I want to be – for me and for my family. I want to actually achieve some goals in the next year.
Gotta just keep swimming and don’t stop believing