Note: I am not a medical professional. The contents of this blog are my opinions and experiences. Always consult your doctor before making any health decisions, and always educate yourself about your conditions and their treatments.
From the Winter 2011 NMSS Greater New England Chapter MS Connection:
"Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster--which usually shows up as the skin rash known as shingles--were more than three times as likely to develop MS over the next year than individuals who did not have an attack."
I didn't write this Chronic Illness Cat submission, but I could have. Every three months a nurse from my specialty pharmaceutical provider calls to ask about my chronic illness. She has a list of questions about symptoms I may have and I generally answer them by saying "yes, but it's nothing new." If someone isn't asking me about them I'm generally not paying attention to them, because these symptoms are my new normal.
So how do I know when something warrants medical treatment? How much pain is too much? How many extra muscle spasms? How much fatigue?
The answer for me is I don't know, and I probably won't know, so I have to place my trust in someone else. That someone for me is my MS Nurse. She's such a valuable part of my team, maybe one of the most valuable parts. She listens to my concerns, gives me information, and, most importantly, tells me when something requires an appointment with my neurologist. I couldn't do it without her.
Register with MS Active Source to get your free MS Workout or MS Yoga DVD. Note: They are affiliated with Biogen, maker of Avonex and Tysabri. When you register you agree to receive information from them. (Of course, you can type anything you want in the email and phone fields.)
Several inches of informational and educational brochures and presentations, three water bottles, a giant cup, five bags, pens, magnets, and more cooling pads than I can wear at one time. There was a mini chocolate bar in there, too, but sadly that did not last until the picture.
The event was more fun than I expected. Because I am my mother's daughter I chatted with a bunch of people and made a friend. (There is something wonderful about being able to speak to people who get it because they're living it.) I attended a workshop on pain and pain management and one on fatigue and learned some things. (Big note to self: arrange to see a physical therapist!) And I ate a truly nice piece of carrot cake with cream cheese frosting.
I'm tucked away at home safe and warm before the snow comes and I am exhausted. Time to file all my information before I lose it and then relax; tomorrow is soon enough to look through it all.
Hmm I wonder. How many people in the chronic illness circle on Tumblr currently attend college? And how do you feel about it? And if you’ve dropped out because of an illness, what are you doing now to make a living? (via leoncillo on Tumblr)
I'm one class away from finishing my BA. One class. One horrid quantitative reasoning (statistics) class. The plan was to have finished it this past Spring. I was taking it and everything was going according to plan until I had another MS exacerbation.
The fatigue was terrible. The pain, the difficulty walking, they were all hard. But what made it impossible for me to finish that class was the cognitive difficulties I developed. Since then I had a neuropsych evaluation and realized why this was all so hard for me. While my ability stayed in the 95th to 99th percentile, my recall speed was in the 21st percentile. I can no longer multi-task, something I used to excel at. Not only can I not multi-task, I can't have any distractions at all when trying to learn something. I have to work extremely hard to commit things to memory and even harder to pull them out of my memory when I need them.
Yeah, it's a blow. I build a lot of my identity on my intellectual ability and on being able to help people, and now I don't have that.
The Neuro-Psychologist was great. She gave me so many tips that will hopefully help me take and finish that one last class that stands between me and my degree. She also wrote something for my college, telling them the accommodations I need and why.
So here I am right now, trying to get SSDI after working more than half my life then having that ability taken away from me by MS. I don't know if I will ever be able to work again but I have to hope.
Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age. The GEMS (Genes and Environment in MS) study is led by primary investigator Philip De Jager, MD, PhD, a Harry Weaver Neuroscience Scholar of the National MS Society. The study is privately funded.
There is no cost to participate in the study, and participants can reside anywhere in the United States because no travel is required to enroll in the study. Some travel may be required for the optional MRI portion of the study and the participant will be reimbursed for travel cost.
Get more information here.
The theme for this year's Invisible Illness Awareness Week is "deep breath, fresh start." Boy, do I need both of those.
But after a while it all began to wear on me. Managing chronic illness is hard and it takes all my resources just to do that. I don't have a lot left for anything else. This year's IIAW theme comes at just the right time for me. I hit a crisis point and I took a deep breath. Then I made a plan so I could make a fresh start.
This post barely skims the surface of my life, but right now it's all I have to give. It's also part of my fresh start, which is really me getting back to the basics of who I am.
Deep breath.
Fresh start.
