Browsed by
Tag: ms treatments

Still exhausted

Still exhausted

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…

Read More Read More

A week off

A week off

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…

Read More Read More

Rituxan Infusion Successful

Rituxan Infusion Successful

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…

Read More Read More

Multiple Sclerosis symptoms worsen

Multiple Sclerosis symptoms worsen

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…

Read More Read More

Multiple sclerosis vs pneumonia

Multiple sclerosis vs pneumonia

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…

Read More Read More

One day at a time

One day at a time

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…

Read More Read More

Not a happy New Year

Not a happy New Year

Hello everyone, Happy New Year. I know it seems like I disappeared but unfortunately I had legitimate reasons. I ended up in the hospital last Thursday with Covid and a UTI. It wasn’t really the Covid that put me in the hospital it was the combination of the two infections. I was so weak I was having difficulty sending a text message. I spent New Year’s Eve sleeping in a hospital bed. So much for 2022 being my year. I…

Read More Read More

Remaining hopeful it will help the spasticity

Remaining hopeful it will help the spasticity

Inconclusive. My bladder test was inconclusive. They said that the sample contained bacteria in their that couldn’t have come from the urine alone. I was thrilled I got urine in the cup. That was a challenge in itself for someone with multiple sclerosis and bladder issues. I even was able to use the little handy wipe they give you before you give the sample. I was so proud of myself that day. So much for that gold star. Thank goodness…

Read More Read More

Who am I without multiple sclerosis?

Who am I without multiple sclerosis?

I was thinking the other day, what if there was a magic pill to cure multiple sclerosis? What if I can take something that not only stops future disability but cures current disability? What if tomorrow I could actually walk again? I have spent half my life with MS. It is part of my identity, even though I pretend it isn’t. Who am I without my disease? I have this recurring dream that I’m working but still collecting disability. In…

Read More Read More

How do you feel?

How do you feel?

I had a really good birthday day. I woke in a very cheery. I just stayed that way all day. How could I not? Every second I was either on the phone with someone wishing me the best or answering a text. I felt so loved. I was exhausted by the end of the evening from talking. However, I just felt enveloped in a gigantic heart bubble. It was pretty amazing. Worth turning 50. On Tuesday, my aide was off…

Read More Read More

%d bloggers like this: