The appointment was called for 11 but as I’m walking out my door, I received a call that they still didn’t have the pre-medicine orders from my doctor. After that call was made, yet again, they informed me I can come at 12:00. I got there and it just took time to get things rolling. Except for a TV and a comfy chair, it was an institutional type of room. However, the people were very nice. I knew exactly what…
I got back from my sisters at close to 8pm last night. Whenever I go away and the trip ends, the highlight to coming home is seeing my dogs. No big shocking news there,especially if you follow my blog. I stepped out of my car and looked up at my window to wave hello to my marshmallow howling in the window. I do this every time I come home since his face started looking out for me. Well, unfortunately, last…
What do you say? Is it easy to imagine a different life? A life where you weren't sick. A life where walking wasn't difficult. A life where you can feel if your hair was dry or damp or your clothes are cotton or silk. Each year that goes by the image fades a little more. I've had MS for so long I can't imagine my life without it anymore. The girl who didn't need a walker passed away over 3…
Finally, after countless phone calls and so much unnecessary stress, my insurance approved Ocrevus. However in their approval, they didn’t approve me getting the infusion at Mt Sinai hospital where I was scheduled. I’m approved to go to a place on Long Island about 20 minutes from my house. Since I just got the approval at 5:30 on Friday evening, there was no way to get me scheduled at the new infusion site for Monday so it will be done…
After 8+ years, I have to give up my normal everyday workout routines. I need to find something else that works that doesn’t aggravate my shoulder tendonitis. My wonderful therapists over at physical therapy have started adding in arm exercises to help build up my arm muscles again. The plan is that instead of going 2 days a week to go to therapy 3 days a week. The focus is going to change to building up arm strength to better…
Years ago I participated in a multiple sclerosis activity sponsored at the same physical therapy office I go to now. My main physical therapist started the program 17 years back and became the multiple sclerosis therapist of the office. I attended this program he started once and only once. Why? Every person in attendance was in a wheelchair. I was only 2-3 years into my disease and couldn’t face that, wouldn’t face that, so I never went back. Instead I…
I’m hibernating for the summer. For most people with MS heat is very difficult. It causes fatigue and muscle weakness, spasms and it basically exacerbates all your current symptoms. They make a cooling vest but let me explain what this thing is. First it’s a vest that comes up to your waist so if closed will nicely accentuate your hips not very flattering. Second it’s this light brown/tan color that is just plain ugly. Third the vest has something like…
On December 13, 2016, I wrote a blog about Alpha Lipoic Acid and multiple sclerosis. On July 3, 2017 this article was published in medical news today. http://www.medicalnewstoday.com/articles/318225.php Ive been talking alpha lipoic acid now for 7 months. I still take 2 600mg pills a day. One in the morning and one at night. Alpha lipoic acid started about 3 months after starting high dose biotin. Another Vitamin shown that in high doses has stopped disease progression. Since both biotin…
I’ve been so involved with the transition to Ocrevus, that I haven’t talked about that I was approved for the nursing aide by my insurance.The evaluator put the request in for 7 days but I really didn’t want an aide 7 days a week. I wouldn’t even know what to do with someone here that many days. My caseworker told me, with the multiple sclerosis diagnosis, it is easy to get the increases if needed. I decided on 3 days a week…
Certainly didn’t envision this scenario when I was young. I wanted to be a baker. I wanted to go to Johnson and Wales culinary school and become a great baker, not a cook. I don’t know what when I changed that dream to going to school for Hotel and restaurant Management, but I did, since that was my degree I graduated with. I know if asked later in my 20’s I’d tell you I should have been an accountant. However…
