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Tag: living with a chronic disease

Kesimpta was approved

Kesimpta was approved

I broke my glass coffee pot this weekend. This seems to happen every two years if not yearly. I do have to say the last time I wasn’t the one who broke it but I shouldn’t brag because I’m pretty sure every other time it was me. I don’t buy expensive coffee pots for this precise reason but I really hated my last purchase. I always put cinnamon in my coffee grinds and this basket constantly caused the caused the…

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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…

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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….

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Distended stomach, possibly the MS Hug

Distended stomach, possibly the MS Hug

My Firestick is set up with a photo album called puppies. It is the random pictures that are used on the screen like a screensaver. I have over 300 photos in that album and yet the same pictures would appear every single time. It has been this way for 6+ months. All of a sudden this past week it is showing some of the older photos in that album. I’m seeing pictures of my Boomer and Marshmallow I haven’t seen…

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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…

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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…

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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…

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The energy graph

The energy graph

I was taking it easy this morning with exercise because physical therapy starts today. Yet I’m huffing and puffing as I sit down to write this. I wanted to be in somewhat a stronger state because unfortunately he is coming late today, at least late to my MS body. He won’t be here until 3-3:30. This is the point in the day where my energy level starts to decrease at a rapid pace. I always say from the time I…

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My view on exercise

My view on exercise

I was watching a show about the Amish in Pennsylvania. I think what shocked me the most was some of the county’s names. I knew of Intercourse, PA but was amazed there is a place called Blue Ball, PA. It starts to make something innocent like Mount Joy, PA to maybe be not so innocent. I mean who came up with these names??? Sure you go from Blue Ball, PA and suddenly you enter Mount Joy. Happily moving to Intercourse,PA…

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I made lemonade

I made lemonade

I feel better than I did after writing Monday’s blog. Going to the neurologist can definitely take its mental toll on me. Hearing my doctor tell me I’m worse, even though I knew this without him, still doesn’t make things better. Especially when the answer to what can be done is somewhat nonexistent. That is always the hardest part, at least for me at my stage of MS. I’m secondary progressive in every textbook sense of the word. I continue…

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