I went in my pool yesterday for the first time in almost 4 months. It’s the first time I even swam since the middle of January when I was away. My elevator was broken for so long and it is my elevator that is attached to the building with the pool. For me in my wheelchair, I have to go outside to get to the pool when my elevator is broken because otherwise there are steps. Other people wouldn’t have…
I was perfect this week. I tracked my food each day. I was within my point range. I didn’t consume my weekly points. I worked out to the best of my ability 5 days this week. I stayed off the scale so I didn’t let it dictate how I ate. I was excited to weight in at the end of the week. My result…I gained 1.2 pounds. I kid you not. At first I was like WTF but realized this…
I’ve been plagued with these migraines for years and years. I remember when they first started. I was driving home from a meeting and was in heavy traffic. I started to notice my right eye blocking out part of the license plate in front of me. Thankfully I was in traffic because I started freaking out. I didn’t know anything about auras at the time but I knew optic neuritis. I thought I was having the start of an MS…
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…
