I feel better than I did after writing Monday’s blog.
- My own discouragement rantI was determined to get into my comfy chair. Ok getting in isn’t the problem, it’s getting out. The chair is not only low but mushy. I don’t have anything very solid to push myself up to a standing position. I tried to angle the wheelchair in front of me, using the chair’s arms. Unfortunately, that didn’t help either. The end result was being lifted up by both my physical therapist and the aide. I was discouraged. Getting into, excuse…
Going to the neurologist can definitely take its mental toll on me. Hearing my doctor tell me I’m worse, even though I knew this without him, still doesn’t make things better. Especially when the answer to what can be done is somewhat nonexistent. That is always the hardest part, at least for me at my stage of MS. I’m secondary progressive in every textbook sense of the word. I continue to worsen without any relapses. I don’t know if Ocrevus or Rituxan has helped any but we are certainly not going medicine free to find out. My neurologist did agree with the specialist that maybe a change in medication is a good thing. Looks like I’ll be setting myself up for Kesimpta starting in September. Monthly self given subcutaneous shots, I thought I was done with this back in 2011 when I started Gilyenia, guess not.
Besides the confirmation I’m worse, the visit was not one of my better days. I was so overheated and wearing a mask did not help. We are having a humidity heatwave in NY and it’s killing me. It didn’t help that moments before I got to my doctor I hit the curb at a bank drive through. Popped out my bottom panel of my van. My wonderful aid was able to get it back in place. The sound unnerved me. I instantly had my adrenaline kicked up about 100 notches. Add that with my already lousy mood and my poor doctor definitely got a sour apple. However he was empathetic as he usually is. He definitely understands the plight if MS patients. Thankfully, that’s why he’s been my doctor for 23 years.
I did “snap” out of my mood the following morning. My dogs always bring a smile to my face and they were both exceptional cute that Tuesday morning. I forgot I was even upset. I decided I needed to spend five minutes remembering what I am thankful for. My life is extremely difficult at times but I have a lot of good things too. I just needed to remember that.