As multiple sclerosis progresses, so does your assistive needs. The first thing I got was the handicap parking permit. I’ve had this for many, many years. I got this early in my disease when I use to work in NYC and had to take a train. The parking at the station was insane and even back then walking that long distance in a rush to catch a train was very difficult. I was never able to run or skip again…
Anyone that knows me knows I don’t cook. I just don’t like it but I know my way around the kitchen. As my multiple sclerosis worsened cooking became even more difficult. I have limited time I can stand on my feet, over a stove or cook top. I also have limited time I can cut and chop before my hands fatigue. Many times I will prepare a dish only to not be able to eat because my hands literally cannot…
I was 27 years old when I was diagnosed with multiple sclerosis. At that time MS had 2 therapy drugs available Avonex and Betaseron. The information on MS wasn’t what it is today because the Internet wasn’t what it is today. I can’t remember how but I joined a support group for multiple sclerosis. I’d say 3/4 of the group were in wheelchairs. At the age of 27, who had recovered 95% from her first attack, this was NOT what…
Anyone with a chronic disease can tell you that those 4 little words, “you don’t look sick”, is enough to drive them crazy on the spot. I’ve written many blogs about symptoms of multiple sclerosis you’d never see. https://multipleexperiences.org/2017/01/23/multiple-sclerosis-serious-symptoms-respitory-issues/ https://multipleexperiences.org/2016/12/04/multiple-sclerosis-silent-symptoms/ https://multipleexperiences.org/2016/11/28/lets-talk-about-sex-and-multiple-sclerosis/ https://multipleexperiences.org/2016/08/05/im-not-tired-im-fatigued/ Multiple Sclerosis, especially in the beginning, can look silent at first. For the first 8-10 years I had barely a limp when I walked. I would fatigue if I walked too much and by too much I mean…
I was driving and my iPod was shuffled playing random songs from my entire music collection. My favorite things when driving were music and smoking. I could drive for hours smoking with the music cranking, loud. I quit smoking years ago for the final time. I didn’t wait for the last cigarette of the pack, I didn’t even throw out what was left of the pack. I woke up one day and said enough. I can’t smoke anymore. It messed…
I was asked today by my physical therapist how are you? I am sure anyone with a chronic disease thinks this is a loaded question. Actually a good friend of mine called me the other day and said, “I’ve learned so much about you and what you deal with on a daily basis from reading your blog. I never knew. Some of it makes me laugh, some makes me feel so bad that I can’t help you, but I never…
On my way to visit my sister back in December, we stopped to eat lunch. I started coughing, had a little tickle in my throat. That coughing started to get worse and worse because it was making no progress. I literally started to choke. I was finally given some water and was able to produce the cough that moved the phlegm or whatever was in my throat causing me to cough to begin with. I was shaking by the end…
A few months ago there was this sound this clanking sound coming from the refrigerator. I must say I can follow directions put things together, tighten things when they seem loose, make minor repairs but major breakdowns, I’m not your girl. When I heard the clanking I knew it was the compressor or something, but that’s about it. I lowered the temperature of the refrigerator from 5 to 0 for a few minutes turned it back up and sound was…
Third time I’m being infused with Rituxan. I was able to change my infusion place back to my home town instead of NYC. Saves at least 3 hours of the day. I got here at 9am and it’s 9:57 IV is just beginning. Why an hour? Well they didn’t get the doctors orders. Now it is a federal holiday today so getting in touch with the doctor wasn’t going to be easy. Her office at Mount Sinai in NYC is…
I decided to go a little honest about our pharmaceutical world of MS. There has been so much press and promise over this new drug coming out for multiple sclerosis. Put Ocrelizumab in your web search and you’ll get article after article about the promise of this new drug. NEWS FLASH!!!! Rituximab is Ocrelizumab The patent on Rituximab expired in the US in 2015. Basically when they were doing the clinical trials with multiple sclerosis by the time they were…
