I think for anyone that has had a chronic illness for any length of time has sat and remembered what it was like before the illness. Or at least what it was like before it got really bad. We remember when we used to dance, run, or have any exorbitant amount of energy. We remember when we taught our child maybe to ice skate or ride a bike. Maybe you remember Sunday afternoon hikes up the mountain. All these wonderful…
Woke up to my phone ringing at 6:45. Thinking that it could be my daughter, I rolled to the floor instead of fighting with my stomach and arm muscles to put me in a sitting up position. By the time I got to the phone the answering machine picked up but my phone announces who is calling so I knew it wasn’t my daughter. They didn’t leave a message but by the name, I realized it was the aide they…
There’s a reason I have an aide for eight hours a day. There’s a reason I don’t work anymore. Sometimes I feel like I’m running a scam, that I should be working or I don’t need an aide eight hours a day. Especially when someone says lucky you. Let me explain something to you and myself, I’m not a lucky girl. I’m not a lucky girl that I’m on full disability and don’t work. I’m not a lucky girl that…
If you’ve suffered through this disease for any amount of time, something strange will happen in your body and you’ll ask yourself this question. It’s normal. Eventually the answer stops making you crazy and you just deal with it. However, I believe that the longer you have the disease the more you know what is or isn’t the disease. Even better you know what symptom is making other problems of yours worse. Like today, I realized my shoulder tendonitis has…
Yesterday I wanted to write a post about which medicines are working. I woke up yesterday feeling great, great as far as a good MS day. I worked out Saturday, Sunday and Monday having no pain in my arm or shoulder. What was more amazing was my stamina. I was able to get through each workout. Even though I napped all three days, I’ve been napping most afternoons when I haven’t worked out Anyway. What I noticed is my legs…
I have this wonderful woman that comes to my home every week to work me out. She is an MS fitness trainer. She doesn’t have me doing weights or cardio, she has me working with kickballs and rings and my own body weight to work and move muscles that are weak and damaged. Muscle movements I would never go near because they are hard. Lots of core work. My very first attack back in 1998 left my left leg with…
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…
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…
Except my morning coffee, I’ve had no issues becoming vegan. I actually like it. It definitely has its challenges though. I was at a graduation party yesterday, of course, I couldn’t eat a thing. I always prepare beforehand when going on these ventures though, so for me it doesn’t become an issue. Yesterday, I ate before I went so I wouldn’t be hungry. At other events, I’ve brought my own food to heat up or brought a vegan veggie burger…
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…
