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Unexpected Friendship

Unexpected Friendship

I went out on a date with this guy 12 years ago and we’ve remained friends all this time. He took me to a Paul McCartney concert at CitiField, not a shabby first date. He was a pharmaceutical rep for another neurological disease. It was easy to make him fully aware I had multiple sclerosis. He understood these diseases and had relationships with many of the neurologist in the area. However, it doesn’t stop him from bringing up that I…

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Jumping from a plane

Jumping from a plane

Good morning. Another week starts again. It is grey looking outside. However the weekend was gorgeous. Open windows and fresh air, I love days like that. Having multiple sclerosis, I like when weather warms up but not when it gets hot. Unfortunately summer is right around the corner and that’s when the bad days will outnumber the good. I don’t have to explain this to anyone with MS, most people have this issue. That’s why I cherish those days with…

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Possibly switching to Kesimpta

Possibly switching to Kesimpta

Happy Monday to everyone. I’m hoping the weekend was lovely for all. I was hit with some kind of stomach bug that disrupted my Saturday. That was the first time in a long time I felt those crippling stomach pains. Good to know I could still feel things in my belly. I must admit, sometimes I wonder since I never do. I mean I can stub my toe and go into a spasm that locks my legs up for a…

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Important information for Ocrevus and Rituxan patients and the COVID-19 vaccine

Important information for Ocrevus and Rituxan patients and the COVID-19 vaccine

I had a phone conference with my MS specialist yesterday in New York City. We discussed many things but the most important thing she discussed was the Covid vaccination. She knows that I had already had received both vaccines and of course that I take Rituxan. Rituxan is the older sister drug to Ocrevus. It seems that for people on these drugs, the antibody production for SARS-CoV-2 was reduced compared to other multiple sclerosis drugs. In my doctor’s easier language,…

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Pain with Multiple Sclerosis

Pain with Multiple Sclerosis

I get these pains, sometimes on my back or my side, out of nowhere. Usually along my bra line. Since I wear sports bras, this is a thicker band area. It always feels like there is something wrong on my skin in a certain area. Like a cut, rash or irritation except nothing is there when you look. The area is fine. No red spot even to show something coming up on the skin. It is completely normal. It just…

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How fatigue affects life

How fatigue affects life

I’ve been so tired lately. I never really took in to account how my body would react to work being done in my place. I knew I would be shifted around slightly but didn’t think it was a big deal. I was clearly wrong. By the time the afternoon comes around I’m struggling to get myself to the bathroom. I’m back to dreading every time the need comes. Sometimes I’m so tired that the hesitancy I talked about recently Bladder…

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The Routine

The Routine

I’m sure I’ve blogged about this at some point because I don’t do well with disruptions. The days of spontaneous activities have long been gone. I could never just meet someone for dinner at short notice. My life, or I should say my activities, are planned both mentally and physically. Everything I do requires a tremendous amount of effort. Everyday is different as to which activity will put me over the edge. The activity might be the same and the…

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My magic button is broken

My magic button is broken

I’ve been chilling in my room as work has begun in my kitchen/living room area. Making things more handicap accessible. Hopefully I will hit less walls with the additional space but I make no promises. Let’s be honest here, my wheelchair driving hasn’t improved. I’m actually waiting once again on a wheelchair repair. This is on the button that was placed on the side that immediately lifted the chair up. My magic button that has been a true lifesaver. I’ve…

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Bladder Hesitancy

Bladder Hesitancy

I’ve written so many blogs about my numerous “accidents” but I never discuss the other way. I actually experience both of them which is why Botox wasn’t an option for me. I dealt with hesitancy long before I dealt with the urgency and the accidents. What is urinary hesitancy mean? If you have trouble starting to urinate or maintaining urine flow, you may have urinary hesitancy. If you ever experienced hesitancy you know how it feels. Your bladder is full,…

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Bluetooth sleep mask

Bluetooth sleep mask

I posted my first video blog yesterday. A beautiful day in the neighborhood. I think that may become my new way to blog. Hopefully I’ll become less nervous and stupid in front of the camera. I’m not one who likes photos or videos of myself so it was a little bit of an awkward position for me. But I did step out of my comfort zone and I did a blog that was much easier on my hands and a…

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