This is my step brother’s 11 year biking for MS. He bikes in my name and for so many others that suffer from the disease. I received his email this morning and as always he fills my heart with love because of his fundraising efforts and the fact he does this in my name every year. 11 years of hard work – and 7 years of top fundraising efforts. And all thanks to you. Every year, donors like you have…
You might think that’s great you had no active lesions on your MRI, no new lesions either. Yes, it is but that is a Relapsing Remitting MS signifier that my main MS drug, Rituxan, is suppose to prevent. It is working which is definitely great. The reason I’m not celebrating is because this MRI result is only part of my picture with MS. There is another part, it is thought of as Secondary Progressive MS. Secondary progressive MS (SPMS) is…
I had to get work done in my condo. I needed to make my bathroom handicap accessible. It is inside. I have a grab bar and a stall shower but the doorway was so small I couldn’t get my walker in let alone my wheelchair. It was on the list of things to do to make my life at home more accessible. I have two bathrooms in my condo. I usually use my daughter’s because I keep my bedroom door…
I have one of my neurologist appointments tomorrow. I have two neurologists. One is the specialist in NYC at one of the big hospitals. She prescribes my main MS drug, currently Rituxan, plus recommends anything in clinical trials like biotin or statins. She’s a great neurologist but I don’t consider her my main neurologist. That is the one I have the appointment with tomorrow. This is the neurologist that diagnosed me 21+ years ago and has been my doctor the…
The heat, the heat is here and it is not making life an easier. I played mahjong and I could barely hold myself upright by the end of the game and I was in AC. The heat finds it way into your bones and still manages to fatigue you regardless of where you are. I came home and collapsed. I was in bed by 9 and slept through the night until 4. I’m exhausted still. I sleep I’m exhausted, I…
It took me a long time to recover yesterday after swimming Back in the pool. I knew it would but my recovery time keeps getting longer and longer. I’m not looking forward to the day I don’t recover because I’m not planning on ever stopping exercising. I might have had to revise it drastically but I still do something to help myself move at least 30 minutes 5 days a week. Unfortunately the rest of the time I’m quite sedentary….
I saw this and had to share it with my readers. The is the MS Foundation https://msfocus.org/ which is located in Florida. I’ve used them for many things from information to grants. They are a wonderful resource to people with MS. Transportation Assistance Grant https://msfocus.org/Get-Help/MSF-Programs-Grants/Transportation-Assistance-Grant The Transportation Assistance Grant program was established to help members of the MS community remain as independent as possible, and ensure all people with MS have the transportation necessary to get the best medical care….
Right down the road from where I live now is a Boston Market. This restaurant has significant markers to the history of my multiple sclerosis. It was this restaurant that I was promoted to general manager. It was here when I was on the phone with my mother when she asked me how my eyes were. The question was about my optic neuritis which wasn’t diagnosed at that time. That was later figured out after my diagnosis. I remember when…
I haven’t blogged about it but I’ve had serious back door chute issues this week. It seems the door is open and people come through unexpected or it stays closed and I can’t get them out. I went weeks with it open and now I went the complete opposite. My stomach was so bloated causing physical pain. It was great for my diet because I couldn’t over eat if I wanted too. My stomach could only hold so much food….
I spent many years in denial. I would pretend it was all good until I had a relapse, well at least that’s how I appeared to the outside world. Those closest to me knew me better. They were witnesses to the tears from the shots or those horrible flu-like symptoms I suffered for the first 12 years of my illness. Those shots were a constant reminder to me that I was sick. I was terrified of needles yet I learned…
