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. Â 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. Â I was shaking by the end…
Should I say Happy Anniversary to myself? It was an after work doctors appointment January 21, 2016 when he said “ENOUGH”. He knew since the summer before I was getting worse, I was the one in denial. On January 22, 2016 I called my job and said my doctor is putting me out on disability and I never was back. Â I kept pushing and pushing to continue to work. I was working part in the building and part at home,…
As expected I was extremely tired after. It’s because of the large amount of Benadryl that is given. I was in bed asleep by 9:00. I’d love to say that was unusual for me, but during the week that’s my normal bed time. Â I woke up with a little stomach ache. That can be a number of reasons but it is listed as a side effect of the rituxan. I don’t remember it from any of the other times I…
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…
