Yesterday was the second part to my Ocrevus infusion. My next appointment is February 26, 2018. The all the headaches that it took me to get on Ocrevus and then all the headaches it took getting the infusion site, I’m happy to say I am done with this infusion. As expected, the infusion was smooth I had no allergic reactions of any sort. Other than being extremely tired from the Benedryl that goes through the IV line, I felt fine….
OK, maybe this is a little too premature. I mean this is only day two of being home without my daughter. I had to run the first errand today that normally she would run for me. Needed money at the bank. To take my walker out to go to the ATM that’s just way too many steps. So I wrote a check out to myself and cashed it at the drive-thru teller window, it worked. I have to be smart…
I’ve had my travel scooter I use for years. It’s very light, folds into three parts and is perfect when I need to travel somewhere. However it is nothing like my electronic wheelchair. That one is much heavier, turns on a dime, but isn’t portable because each part is extremely heavy. Yesterday was day one with my daughter in the city. Her and I took my travel scooter by train. When I get into Pennsylvania Station, it’s always busy with people…
This will be a crazy week. My daughter just came home yesterday. She went up to my sister for a long weekend with her boyfriend that went really well. All I know is it’s 9:00am and she’s already out of the house to hang with him before driving him to work. She moves into her NYC dorm this week and by dorm, I mean the New Yorker Hotel. This “dorm” comes complete with tv, refrigerator, fitness room, 24 hour doorman…
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…
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…
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…
I’m pretty sure I had a MS long before I was diagnosed . I had many strange things happen even as a child. When I was in the fifth grade, I got it rash. The rash was only on my hands and my feet, like gloves and socks. The day my mom took me to the dermatologist, I threw up in the bathroom. The dermatologist said I was having an allergic reaction to the virus. My body was literally allergic…
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…
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…
