Sometimes it is overwhelming dealing with a chronic illness and navigating through daily life. I know I’ve lived there. I use to unleash it all on my mom. She has so much empathy and I adore her but she doesn’t have multiple sclerosis and she didn’t, she couldn’t, fully understand. I was sad for a long time until I changed my thinking and changed my perception on life. I have a life coach that helps me stay on track and…
I see my neuro who I’ve been seeing now for over 20 years. These appointments always seem to upset me. Not the doctor, the reality of my disease. It isn’t that I don’t understand multiple sclerosis or I don’t know the current research, I like to think I am somewhat current on the disease. It is more going to a doctor and leaving with the knowledge that your not going to get better. It’s very silly actually because I know…
Good morning. I’m happy to report I am finally feeling better. I actually started feeling a little better on Saturday. I went swimming and was able to still get around my condo without having that bone feeling fatigue. So it took about 6 days for me to start feeling better. By Sunday I was good. It was a tough week but I don’t have to worry about the infusion again until March. I can handle that. I remember when I…
I love the quiet of the mornings and watching the sun sparkle off of the moving water. My daughter is home for the weekend and she’s happy, loves her school, it is all I wanted for her to experience. Even with my severe fatigue this week, I’ve swam in the pool and have a new appreciation for the repetitive nature of the exercise. I love my condo. This place was made for me from accessibility to my view. I am…
Fatigue!!!! That’s the only word I could use. I’ve been exhausted but it’s been in my muscles too. It’s been hard just getting around my condo because of the muscle fatigue. I almost went into my scooter last night. Every step is difficult to take not only in my legs but in my arms holding me up with the walker. I don’t remember feeling this way last time but last time they messed up and split my dose. This was…
I’ve been really tired. I have gone to sleep by 9:00 since I had the infusion done. However one of those days was because of the Benadryl given with the infusion. I went to physical therapy but I was fatigued easily. Plus my face has a lovely rosey red cheek blush that cane on as soon as I moved. My therapist decided at the 1/2 point that it was enough. It wasn’t my greatest appointment but I’m glad I made…
I received a call of alarm from my primary physician on Saturday night at 9pm that my thyroid number was extremely high. Showing evidence of hyperthyroidism yet none of my other tests or symptoms showed any evidence of this. Since I was due to take my Ocrevus infusion the next day, he felt I should possibly put it off. He wanted me to repeat the blood test first thing Monday morning and they were going to get me an appointment…
I had my physical yesterday and brought up my favorite topic, weight. Once again I put on a couple of pounds. This has been a very frustrating year for me when it came to weight. My doctor finally made some sense as opposed to just saying it’s your multiple sclerosis. He explained why. Yes, I do swim which is great, but I also sit around quite a bit. As my symptoms have gotten worse, my muscles have atrophied to a…
You just can’t make this stuff up. I think the last problem has been finding an agency to come to my home for the 5 hour infusion. The reason I say I think is because I’m not even 100% sure that is what the issue is about. If that is the hold up I told them I could do it there but now that might not be an option. I’m very confused. I’m still not sure if I’m getting the…
