Browsed by
Tag: ms difficulties

Bike for MS

Bike for MS

Once again my brother is training for his 50 mile bike ride for multiple sclerosis. Each year he does this fundraiser in my name. Raising money riding a bike, something I’ve been unable to do for at least 8 years. Please help us find a cure for all of those who suffer daily but are still warriors. https://www.facebook.com/donate/157731676220745/?fundraiser_source=external_url Why We Want to Create a World Free of MS It’s now 13 years ago when I said I wanted to ride…

Read More Read More

The week ahead

The week ahead

It was a non existent hurricane in my area yesterday. Not just non existent but after the rain in the morning we didn’t even have rain. My mom, who lives 13 minutes from me, had rain on and off all day. My friend in the town next to me also had rain all day on and off but not me. It was so strange. The sun even started coming out while my mom was experiencing pouring rain. She didn’t believe…

Read More Read More

I don’t recommend Physical therapy during the summer

I don’t recommend Physical therapy during the summer

Before I start my blog I want to wish my dear friend Hindi a Happy 50th Birthday. I love you. Have the greatest day. I’m melting. I am fully inside with the AC cranking but I feel the heat inside my bones. I was trying to transfer to my comfy chair this morning and it took me 10 minutes. I didn’t fall but my legs were like jelly. I kept having to repositioning myself to get the right stance to…

Read More Read More

MS won this time

MS won this time

I had a very disappointing physical therapy session yesterday. I walked about a hallway and a half. The second full hallway still being my goal but once again escaping my grasp. I got tired and tried to sit for a second or two before I started my trek home. That was probably the beginning of the bad decisions. The upright walker isn’t easy to turn around with but even harder when you are trying to turn around to sit. There…

Read More Read More

Positive quotes for multiple sclerosis

Positive quotes for multiple sclerosis

I had a lousy physical therapy session yesterday. Actually pathetic was more like it. Lousy multiple sclerosis day and I have no idea why. My physical therapist says he wished he had a manic pill to cure MS. I would settle for a pill that gave me the day off or even an hour off. I miss being able to dance. I’m watching this tv show about dancing and I could never move the way they do. However what I…

Read More Read More

Kesimpta was denied

Kesimpta was denied

My neurologist and I decided we were going to switch to Kesimpta by my next infusion date. https://multipleexperiences.org/2021/04/26/possibly-switching-to-kesimpta/. My doctor wanted to start the process in July although my next infusion date isn’t until September. We entered the prescription into the pharmacy to start the process. It was less than 24 hours later that I received the denial from my insurance. The denial reason was that this medication wasn’t necessary and there may be other medication that can met my…

Read More Read More

Determined to walk

Determined to walk

These weeks are going by super fast. It’s Friday again already. Obviously, guess I didn’t really need to point that out. I just feel like things have been on hyper drive lately. It’s bizarre. I mean we are already through half of the year 2021. Didn’t we just celebrate the New Year? Does time speed up as you get older? I turn 50 this year, in November. I remember throwing a surprise party for my mom when she turned 50….

Read More Read More

Purging out the dresser

Purging out the dresser

I slept in today, didn’t get out of bed until 9am. It’s 11:15 and I just finished an hour of exercise. I’m drinking my first sip of coffee. I had a good weekend. I watched the entire season 4 of the Handmaids Tale. I am still processing my thoughts on that one. I also took my daughter to the train really early Sunday morning. She went to visit her boyfriend who is moving to Maine. NY to Portland, Maine is…

Read More Read More

Walking again

Walking again

I did good this week, despite the heat. I walked the hallway in my first real Physical therapy session on Thursday. I love the upright walker. It has made such a difference for keeping me straight when I walk. I do walk slowly. I am paying very close attention to my hips moving and my feet picking up. I do what Trevor, in the MS Gym, calls pause walking. I take my step, PAUSE, regain balance and alignment and take…

Read More Read More

Neurologist retirement

Neurologist retirement

My neurologist has joined one of the big group hospital networks as most of the doctors on Long Island are forced to do. I’ve been with him for 23 years. Everyone in his office knew me. It was originally his first wife, who unfortunately passed away, and another secretary. They added an additional bookkeeper when his wife got sick about 15 years ago. It has been the same staff all these years. I could call up and say hi it’s…

Read More Read More

%d bloggers like this: