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 finally woke up feeling better today. I feel like me. I got up and exercised first thing this morning and it felt really good to sweat. The headache is gone. It has been a full week but I think I’m through the side effects. It is my beautiful sister’s birthday today. She is 50 which I can’t believe because she looks younger than me. She is a kids music and movement teacher. https://m.facebook.com/barikoralfamilyrockband/She has her own YouTube channel with…
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…
Today my van is getting delivered back to me. It seems that the circuit breakers under the floor were water logged. I can’t explain how but the switches needed to be replaced. They kept the car for an extra day testing everything out and hopefully this won’t be a problem again. I am doing my Rituxan infusion later this evening but I am doing at home. That makes a five plus hour infusion so much better. I get to be…
It was actually approved for my Rituxan infusion. I will be taking it like the Ocrevus and in a full dosage. I know that my doctor has lowered the amount of steroids I need to take prior to the infusion and I will be taking 250mg. Still a high dosage considering prednisone, the oral steroid pill most people take, is normally issued in a step down pack where the highest dosage is a 10mg pill 6 times a day. Just…
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…
