Snap out of it!!! I was telling myself that for a week. I spent a week in pjs because I didn’t have the energy to get up and get dressed. I’ve been lethargic and tired and just morose. I was off of the steroids and knew it could be a side effect but it was bad. I saw the specialist that Tuesday and when we got to the list of my medication and Prozac she asked for the very first…
I have to admit, I never expected the handicap vehicle to be quite so much money. I’m glad at least when I started this journey I did start at the dealership first. I have a foundation from multiple sclerosis that is helping me but they certainly didn’t have enough funds for the entire van, or anywhere near it. The multiple sclerosis foundation only helps with the purchase of the conversion and they certainly don’t cover the full cost. I’ve done…
I went to get my nails done yesterday and was so happy seeing a few snowflakes. I wasn’t so happy an hour later when my car was covered and the streets were covered in this wet heavy snow. It came down super fast. In that hour a few inches had fallen and was continuing to fall. I now had to drive home. Wasn’t the greatest ride home. Took me about 20 to make a 7 minute drive. This morning I…
Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…
It is tough. I go to the doctor and my neurological tests aren’t so bad from my last visit. My timed walking was increased by only 2 seconds. No big deal. My range of motion was pretty much the same range as it was last visit. My MRI shows no activity. Yet I’m worse. Everyone who is involved in my daily life knows I’m worse. It’s frustrating. It’s not like my doctor doesn’t believe me. It’s not like my doctor…
Why? I had to be in the city today for an early morning doctor appointment. Of course today it’s pouring. That means extra traffic and slower conditions leave earlier. That was my intention as well as my step dads wish but of course that isn’t what happened. This was all thanks to me and my wonderful multiple sclerosis issues. I got up fine. Got dressed took care of my dogs, all good. It was my shoes. I can’t wear my…
I have an appointment tomorrow morning in NYC with my MS specialist. I’m coming off a 3 day round of steroids to see if it was at all possible I could be having some type of relapse. I personally didn’t believe that’s what was happening, however I believe steroids can you give me a little bump up in the energy. My thought going into tomorrow is if I’m still deteriorating so much, why am I taking such a heavy duty…
I’m Jamie. I was diagnosed with Multiple Sclerosis in 1998. I have been lucky that I’ve been able to be on my feet for many years but my time to be in the wheelchair is here. I have been a single mom since my daughter was 7. She was born with a progressive hearing loss. She received bilateral cochlear implants. I dedicated most of my years to getting her the help she needed in school both academically and socially. My…
I am not feeling good. I expected it following my steroid infusion. My skin almost hurts. I’m happy to say I slept in which was needed. It’s a beautiful day here in New York and I am happy to be in my pj’s looking out at the water. I’m accompanied by my fur babies and I’m good for the day. Wishing everyone a lovely Saturday. Please visit my Go Fund Me page. Any donations are greatly appreciated. https://www.gofundme.com/6c89ruo?pc=ot_co_dashboard_a&rcid=58dcd35905d2429dab618754ee799669
Well when I took out the stint my hand was swollen. That would explain the pain that was going on during the infusion. I got a call at 8:00 last night from the nursing staff about coming today to do my discharge. They said they were going to take out the stint and do my paperwork. I laughed, as soon as that infusion was done I ripped out that stint. I wasn’t leaving that in my hand a minute longer…
