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…
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…
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…
Good morning. Happy Monday. I’m not sure why I care if it’s a Monday, Tuesday or a Saturday. My day doesn’t vary all that much I need to keep track of the days of the week so I appear at the right activity planned. I mean Monday morning at 9am is occupational therapy. I’d prefer not to answer the door in a nightgown with bad breath. However, I’m sure I will one day sleep late convinced I didn’t need to…
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…
My daughter came home. Her health insurance is still in NY and she needed to see the “female” doctor. She decided to come home Wednesday evening because she was able to get an appointment for Thursday. Otherwise she would have had to wait until some time in December. She has to go for a sonogram before she leaves Friday morning. I am just happy I got an extra day to see her that was unexpected. I just love her face….
When your day starts off with an accident and a fall, you aren’t feeling so optimistic for a good MS day. Yesterday evening was my second Kesimpta shot. I decided to once again do my thigh region. I did my right leg this time. That might not have been the best place. As soon as the needle pierced the skin, my leg immediately went into a super spasm. I twitched and moved during the injection. It hurt. I know that…
I started getting freaked out reading other people’s first shot reactions on the Facebook Kesimpta group. I thank Sherry for commenting on my Kesimpta delivery blog and telling me about the group but it didn’t help my nerves. Thankfully, I had a video conference with my neurologist yesterday. She explained Kesimpta is nothing like the interferon shots that I took for the first 12 years. The shots that still give me those horrible flashbacks that are causing all this fear….
I got a call yesterday from the pharmacy about the delivery of my new medication, Kesimpta. I am being mailed 3 doses for my first month. I take a shot weeks 1,2 and 4. From there it will be once a month. The shot is recommended to be in my thigh, stomach or upper arm. All the memories of the years of Betaseron come flooding back. Betaseron was my main MS drug until Gilenya, a pill, came out. 12 years…
It was a non existent hurricane in my area yesterday. Not just non existent but after the rain in the morning we didn’t even have rain. My mom, who lives 13 minutes from me, had rain on and off all day. My friend in the town next to me also had rain all day on and off but not me. It was so strange. The sun even started coming out while my mom was experiencing pouring rain. She didn’t believe…
