This morning I was watching people get in their cars and head out for work. There was a part of me that was jealous. Jealous that their life was easy in a way mine wasn’t. I stopped working three years ago. Since then I had to get an aid to assist me 5 days a week, I’m in a wheelchair when I leave my house and I now drive a handicap vehicle. That’s a big change from the days when…
You’d think a simple game like mahjong would be easy for someone with a chronic illness. Any game card or tiles. After all you are just sitting at a table all day how hard is that? Well now add in a weakened core muscles and for some a hint of cognitive difficulty and the simple task isn’t simple. For me, it’s the core muscles. It’s those muscles that hold your body up helping you sit at that card table. It…
Another beautiful day in NY. I love watching the sun glistening off the waterI’m sorry my picture doesn’t do this any justice. I had a long day yesterday getting back to my normal life post infusion. It started with a double therapy. That was physical therapy followed by occupational therapy. I thought putting them together might make my week easier but it didn’t make my day easier. I followed that 2 hour of exhaustion with an eye exam because why…
I had my infusion Friday and today is Tuesday. I woke up not feeling well. I have a bad headache. My body just feels heavy. I am so thankful I had nothing on my schedule because the thought of going out is overwhelming. I’m even taking today as one of my exercise off days because I just can’t. This is the feeling I was concerned with post infusion. Yesterday I felt pretty good although I got very tired very easily….
I had my full dose of Rituxan Friday evening. The weekend was fair. Yesterday, which was Sunday, I didn’t feel well but I think that was more steroid related. Today I woke up and I felt better. I find I fizzle faster. I have gone into bed before 9 both nights and slept well. Even waking up to use the bathroom has been minimal. I have worked out each day refusing to give in to the fatigue but I do…
I had my full dose infusion of Rituxan yesterday in my home. Definitely the way to have an infusion. Got my dogs with me for some puppy love, relaxing in my chair and catching up on DVR. The infusion was started very late which was a downside. My nurse had an issue with a prior patient and an infusion that was already scheduled late was now started at 6:30pm. Rituxan, like Ocrevus, is a 5-6 hour infusion so you could…
After I spent hours on the phone getting my van taken care of, they finally came to tow it to a place on Long Island instead of New Jersey. I was mentally exhausted. As I am coming back into my condo the phone is ringing. It was my infusion place. The authorization for Rituxan isn’t going to be overnight and my infusion scheduled for Wednesday was canceled. All I could do was laugh. One problem solved another one starts. This…
So my infusion is coming up and I’m waiting on authorization. I’m switching back to Rituxan hopefully because I personally feel slightly safer on the drug. However I can only imagine what this will do with the authorization of the drug. Ironically my last infusion my pharmacy had Rituxan on the approved list but not Ocrevus. It took my a while to get Ocrevus approved. Now that I’m switching again to a drug that is technically not approved for MS…
I went to my neurologist this morning for a wheelchair assessment appointment. I have an electric wheelchair plus my travel scooter already. My electric wheelchair isn’t in the greatest shape. I bought it online and it is so much better than the scooter but it doesn’t go exactly straight. It goes to the left. I’ve learned how to navigate with this issue but it is slightly annoying. The tires also need some help. Needless to say that’s why I was…
I received a call early in the morning that my aid’s son was sick she wouldn’t be making it to me for the day. However, yesterday was mahjong and I wanted to go. This is why I got a handicap van for my independence, right? So I decided I was going to go. I was more worried about getting out of my house without my dogs running out the door on me. I decided to be very proactive. My word…
