I’m still here!!! By that, I mean I’m still in Philadelphia. Looks like we aren’t leaving for Denver until the end of the month. Also, I’m still here in the blogging world. I apologize for my absence. I have mostly been sleeping. Since I got the chemotherapy last (in mid March) I have been terribly fatigued. I guess that is part of life with lupus. “Chronic fatigue syndrome.” The past few days I have actually been awake for most of the day though. So hopefully that bout of fatigue is over. I believe today is the first day I will have gone without a nap in at least a month! Sad, but also exciting.
Meanwhile, a lot has been going on. As you know, I live with my parents right now in Philly. They are moving to Denver for my mother’s job- my mom actually moved out there a few weeks ago. My dad and I are stayinig out here until we get packed up- in about two weeks. They already found a house in Denver and close on it at the end of the month! It’s pretty nice, I’m excited though to customize my bedroom and stuff.
It’s hard to believe SUCH A BIOHAZARD that has to be handled with such carefulness, is what they chose to put in my body:
But good news…On the subject of LUPUS… I am officially finished with chemotherapy!!! Now I am on a medication called CELLCEPT. Which interestingly enough is an organ transplant anti-rejection drug. “It works by weakening the body’s immune system so it will not attack and reject the transplanted organ.” In my case, the ‘transplanted organ’ it’s trying to save is my WHOLE BODY. Because the very nature of my disease is that my immune system IS attacking my (good) organs. I’m only about a week into it, but it seems to be working well so far.
I also started a medicine called Cymbalta. It is 1) for anxiety, and 2) it treats my kind of pain!!! (i.e. bone, muscle, and osteoarthritis pain!) The good part is that it’s a non-narcotic that works by “stops the movement of pain signals in the brain.” I’ve been on it for a few weeks and so far- it’s generally working better than the morphine! So now that I’m out of my sleeping spell, I think things are going pretty well for me.
I have one last Philadelphia appointment with my neurologist and one with my rheumatologist next week… then I’ll have to find the same in Denver. I think I already found a set of rheumy’s in Denver at University of Colorado Hospital. Luckily my rheumatologist here offered to talk to a doctor I found in Denver. I say ‘luckily,’ because I ordered my medical records from Hannemahn Hospital just since November… and they came in a box in the mail. The stack of paper is literally 2 feet tall. I think the doctors I hand that to might get a little frustrated/ or just laugh at me. Anyways, I’m feeling pretty confident that it will work out and I will be in good hands (not to mention at one of the leading lupus research hospitals!)
I think I may have my dad take me out to my favorite sushi restaurant tonight… and that’ll be out Easter celebration. Haha. Sounds like a good excuse to eat some sushi to me!
I plan on uploading a bunch of pictures soon, hopefully in the next few days I’ll be adding stuff! So be sure to check it out! For now, I’m going to check on some sushi! Happy Easter!