I was thinking this weekend about when I worked. I’ve read a few MS blogs where people discussed when, if ever, do they disclose their disease to their employer? If you are new to my blog, I was diagnosed with multiple sclerosis when I was 26. I’m 50 years old now. I became disabled when I was 44. That left a lot of years when I worked. I held my last position for 13 years with the same company but…
Happy hump day. Another day, another week. This week was a little different for me because my daughter is home for a visit. I love having her home. I love her energy in the house. I love how she climbs into my bed when she wakes up and is always in my bed before I go to sleep. I miss her when she leaves until I get use to her being gone again. Right now I get to enjoy her…
Ok a new MS research blog brought to my attention by my dad yesterday. It has to do with the Vagus Nerve (pronounced like Las Vegas). The vagus is a major nerve that runs throughout the body and controls crucial functions, like heart function and blood pressure, digestion, breathing and immune response. It also conveys sensory information to the brain about the current status of internal organs; a process termed interoception. The vagus nerve is a major therapeutic target for…
Some days are better than others. I walked the hallway again yesterday and it was so hard. Ok, it was hard the first time I did it but it was so much harder yesterday. My right leg, which is normally the leg that gives less issues, was very difficult to move. It was difficult from the hip flexor. I had problems moving the leg forward. My left leg, which normally drags, has difficulty clearing a step without my foot impeding…
I woke up yesterday and felt really good. I got up, into my wheelchair and I finally was able to stand on the scale. I held my my balance for a split second allowing the scale to actually show an accurate number. I was 138, fully dressed. I never weighed myself dressed. That is 3lbs from my ultimate weight goal. A goal I never even thought was going to ever really happen. Well I guess there is something to say…
I’m not grey anymore. My daughter dyed my hair yesterday. A grueling experience. Not because of her, but I had to sit in my wheelchair for an hour. I have been really tired this week. On Monday I wrote I blogged I wasn’t having any reactions to my Rituxan infusion. Today I have to admit I might be having a reaction to my Rituxan infusion. I am definitely feeling run down. What is really worse is my hands. I’m not…
Well I finally was able to take my MS meds again. Last time was January 19. That was Kesimpta. I made the decision to go back to Rituxan after using Kesimpta for six months. I had 3 UTI’s, Covid and a pneumonia within that 6 months. I didn’t think it was the drug for me. I have had issues with Rituxan in the past, skin issues. I can’t say all my infusions have been smooth sailing. I just never needed…
I’m better. No more fevers. My breathing is back to normal. I’m completely done with antibiotics. I have no more signs of the pneumonia. Great news. Yes it is. Yet the aftermath is as I expected. I was weakened from being in a bed for 1 1/2 months on top of my multiple sclerosis symptoms worsening. I had no time to adjust to my new body because I was so sick. I wasn’t focusing on my MS while I had…
I last took a Kesimpta shot on January 19. It is now the beginning of March. I had this dilemma of being behind my shot date in January. After Covid and a UTI that put me in the hospital the first time, I needed to be well before I took my shot. That ended up being about 6 weeks after the last shot Kesimpta dosage instruction is every 4 weeks. I’ve never not taken a disease modifying therapy from the…
I am still here, barely. I got home from the rehab last Wednesday. It has been rough!! I fell 4 times within the first 12 hours. My strength was significantly worse than I realized. My legs couldn’t hold me up. I realized they didn’t have the strength to push from a seated position to a stand. I was bed bound. This dark cloud came over my world. I refused to talk to anyone. I cried. I am always fighting multiple…
