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Twenty Seven Years with Multiple Sclerosis

It’s always about Boomer

Hello my overseas friends

#daily life with ms #living with multiple sclerosis #ms china #ms life #ms overseas #ms Singapore #ms symptoms #Multiple sclerosis

I realized in my day to day life, regardless of my monotony, I am pretty happy. My multiple sclerosis has come to a point where my disability has limited my life participation. I spend most of my day watching television from my bed. Currently I have been watching old seasons of Law and Order SVU. When you watch as much TV as I do, you run out of current shows. I spend the day cuddling with my two…

#Amazon #coma inducer #daily life with ms #difficulties with ms #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms accommodation #ms challenges #ms difficulties #ms fatigue #ms life #ms over 20 years #ms symptoms #Multiple sclerosis

No MRI changes but MS Worsening, Pool Theory

I wrote this blog a long time ago. I am reposting it because I just had my annual MRI. My doctor was happy to report that my MRI had no changes. No changes but my right side disability has not only caught up to my left side. It usually is worse. My right side that has overcompensated for the last 27 years with the weakness to the left side. The rest side where enabled me some form of mobility. My…

#daily life with ms #diagnosed with MS #difficulties with ms #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms difficulties #ms life #ms over 10 years #ms over 20 years #Ms progression #ms symptoms #ms treatments #Multiple sclerosis #Rituxan

New Year, New Post

I made two simple resolutions this coming year; to join the Marianne Williamson daily workshop on both A Course in Miracles text and workbook and post blog posts again. Two very simple things that are easy to do. Plus two things that ultimately make me happy. So here I am with my first blog post of 2025. I have to say 2024 went really fast. I achieved a long time goal of mine. I hit every…

#daily life with ms #difficulties with ms #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms difficulties #ms fatigue #ms life #ms over 20 years #Ms progression #ms symptoms #Multiple sclerosis

Crazy Spasm

For anyone that has pain with your multiple sclerosis or pain with any other disorder, I honestly have a lot of sympathy for you. I experienced a spasm that caused so much pain I couldn’t even move. It started as what I call an indigestion bubble. You ever get that gas bubble that travels trough your body and it can be painful. I always have to try to move or stretch for it to go away. Lately it…

#daily life with ms #diagnosed with MS #difficulties with ms #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms difficulties #ms life #Ms progression #ms symptoms #Multiple sclerosis #so asticity #spasm

Hello

I’m still here. I have kept the blog. I know it’s been a long time since I have written anything but I have to admit I haven’t had much to say. My life is very quiet now. I choose it to be that way. I find it easier. I still workout in the mornings but I now do it only 5 days a week. I’m still obsessed with Bionic Gym. However, I spend the majority of my day in my bed watching tv. I can’t really…

#daily life with ms #diagnosed with MS #difficulties with ms #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms difficulties #ms fatigue #ms life #ms over 20 years #Ms progression #ms symptoms #ms treatments #Multiple sclerosis

A Jamie update

I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my…

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#daily life with ms #diagnosed with MS #difficulties with ms #ivig #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms fatigue #ms life #Ms progression #ms treatments #Multiple sclerosis #Rituxan #steroids

Do We Continue MS Disease Therapy Drugs?

I’m faced with a major decision coming up soon. Do I continue taking Rituxan? Not only Rituxan but any disease modifying therapies. I’ve been plagued with infections. I do believe that all of these infections have not only been difficult for me mentally but have played a significant part in the worsening of my symptoms. It’s the age old question, is the MS medication doing anything for me? Are…

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Could Diet and Holistic Medication Cure MS?

Hello, yes, I’m still here. I’m actually doing ok. Nothing has changed. I’m still dealing with UTIs and GI issues but they’ve been improving. I have season 2 of Alone playing in the background. The episode I am on has 4 people left. One of the participants is a woman with multiple sclerosis. I didn’t start watching because of this woman, just dumb luck. Anyway she is 45. She said 15 years ago she…

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#cure multiple sclerosis #diet and multiple sclerosis #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms life #ms over 10 years #ms over 20 years #Ms progression #ms symptoms #Multiple sclerosis #Terry Wahls

My beautiful Mary

I want to dedicate this blog to a friend that recently passed away. My heart is broken that this girl will no longer be around. Mary is the sister of my ex-boyfriend. Over the twelve years of knowing her, she became a sister to me. Mary was always my dog babysitter anytime I went away. She has been with all my dogs Boomer, Marshmallows, Zoey and Minx. She was just as heartbroken when we lost…

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#dog sitter #loosing a friend #loss #sadness

Stopping Disease Modifying Therapy Drug

I had a conversation this morning with my neurologist. This was my specialist in NYC however I did have the conversation with my other neurologist last month. It is on a topic we have been questioning with every UTI I’ve dealt with since April. Is it worth continuing suppressing my immune system anymore? I have certainly not been stable on Rituxan. Part was due to the pneumonia, can’t blame…

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#daily life with ms #diagnosed with MS #difficulties with ms #disease modifying therapy drugs #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms challenges #ms difficulties #ms fatigue #ms life #ms over 20 years #Ms progression #ms symptoms #ms treatments #Multiple sclerosis #Rituxan

Wheelchair Isn’t Only For Transportation

So I have to say I’ve never been so happy to have my chair. Who knew that I would have missed my chair so much. I am not one who usually spreads love to Kit, my main wheelchair. I probably spend more time cursing at some misfunction or slow maneuver. However, I never realized how much this chair did for me until I didn’t have it for 2+ months. I don’t think I’ll be cursing my chair anytime soon.…

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#daily life with ms #diagnosed with MS #difficulties with ms #living with a chronic disease #living with MS #living with multiple sclerosis #MS #ms accommodation #ms challenges #ms difficulties #ms fatigue #ms life #ms over 20 years #Ms progression #ms symptoms #Multiple sclerosis #wheelchair

Finally Getting My Wheelchair

I’m finally going to pick up my wheelchair today. Only took two and a half months. I have already placed a call to my physical therapist. I now will have a lot of work to do trying to rebuild the strength I lost. I don’t have any physical therapy days left for the year so this is now going to be paid out of pocket. It is extremely unfair and extremely unacceptable that it took this long to get my…

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My Other Issues

Today my wheelchair is supposed to be picked up. They will be taking my chair back to the shop to fix. I find it amazing that they can afford to send a courier to pickup the chair but can’t send a technician out to repair the chair. The company is so short staffed that the cost of the courier service outweighs sending a repairman. I have my wheelchair evaluation on July 25th. It is at this…

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Broken Wheelchair

I have the same routine every morning. I’m up at 7am to be changed by my aides. I always get out of bed so I could feed my dogs. I like to be the one that feeds them so they know I’m still mom. I workout as soon as I am back in my bed. I always workout first thing in the morning. My workouts have been just my Bionic Gym with weighted bars because I can’t do my resistance bands. I need my sit up…

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