Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Wednesday, December 15, 2010

Serving the Lupus Community One Click at a Time!

My New Year Bash with CNS inflammation, Solu-medrol, and espresso!
February 06, 2011
I did have that brain MRI on December 22nd. It showed active lesions, which had me rather disgusted to say the least. I was feeling like my brain tissue was defeated. I decided not to focus too much on the news and turned my attention to my family and the holidays. Do know that I spent a few mornings weeping tears of frustration into my pillow. I just didn't weep in front of my family, and I did not take my frustrations or anger out on my loved ones.
Unfortunately, and to my dismay those familiar neurological sensations were upon me the first week of January. My CellCept® dose had been titrated to 2 grams daily, recently my rheumatologist increased it to the maximum dose of 3 grams daily, that is 1500 mg twice daily. Unfortunately, he wants my neurologists at UCSF to consider what "other" medication can be added to the mix. That bums me out, to say the least. I was hoping that the CellCept® in and of itself would be sufficient to slam the disease activity!
The 3 grams have made marked improvement within a week. Namely the pounding and searing headaches from hell have almost vanished, and the right leg numbness is resolving steadily, and the truncal ataxia (seated and standing) and in-coordination reducing daily. I guess I won't be riding a skateboard anytime soon! Bummer (this is sick humor- sarcasm, I haven't used a skate in near 25 years! hahaha!). I must discuss with Dr. Cree these strange and annoying chorea types jerks 24/7 - very annoying when your in a very peaceful state, such as laying down and reading a good book by Dorothy Allison or Anne Lamott!
I'm currently brainstorming a few new ideas for this blog, without spreading myself too thin and without over committing myself to too many commitments. I am at least mindful to the concept of time management for the chronically ill, and even more willing to apply it. I'm still writing for The Lupus Magazine. I talked with my friend Tyler M. recently, and he pointed out that I should write more technical things for the magazine. I like a challenge, so long as my brain and cognitive function are up for organizing the details!!! I will be announcing the additions to this blog soon!
I have two layperson survey's regarding ANA testing, I hope that you will take a few moments to participate. Your answers will be used in my March article for The Lupus Magazine, but most importantly, your answers will be beneficial to both the scientific and medical community- as many of them do read The Lupus Magazine as well as this blog. Education crosses all sectors and we can assist the medical community to serve other zebra patients through sharing our own experiences.
Keep kicking ass,
“The most powerful weapon on earth is the human soul on fire"

Ferdinand Foch (1851-1929)
French Soldier, Theorist

Yuletide Greetings
It's one week before the Winters Solstice and the Wigilia (Christmas Eve). I've been laying low for over a month. My CNS issue's were pounding me to the point of aphasia. I didn't even submit my December article to The Lupus Magazine. My rheumy and neuro doctors are finally in concert with my "Complicated medical treatment." I was titrated up to two grams a day on the Cellcept since my last post. I'm still not up to snuff. My doctors want to try me on monthly IVIG infusion therapy along with the Cellcept. I've heard of people getting great results on it. Last year on December 22nd, I was informed that I had multiple sclerosis by a neurologist who neglected to take into account my connective tissue diseases, and medical history. Eventually, I was vindicated (which for the record, no one should ever have to be vindicated with their health) by one of America's top neurologists at UCSF. I am a overlapping patient. I never present with any classic signs with any medical issues that I've experienced. I'm not a boring patient.
One neurologist on my Big Kahuna neuros team at UCSF, actually told me, that he was sorry for all that I have gone through! (I should have made a video to send to some of my former doctors! ha ha!) My kick ass Big Kahuna primary doctor jokes with me
about my crazy medical issues. She said that when I go to the hospital, one doc will step out of the room and return with five more. I have been told that I fascinate doctors. But, that in and of itself does not define my reason for being alive. I'm here to help other zebra patients get the recognition and treatment that they need and deserve. Next week, on December 22nd, my overlap neurological auto immune anniversary, I will have yet another MRI of my brain. I will continue to have these every six months for the next several years. I will have my daughter, father and sisters with me for the Yuletide. I will do my best to pace myself during the next few weeks.I'm rather tired now and will post a few more before Christmas. Stay strong! Don't get defeated between your ears! Remember that acceptance is a process, not an event.