A Jamie update
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
3M ago
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 immune system we are once again hoping these infections will stop. The day before I had the IV I got one of my migraines. I can’t explain why, but ever since the IV was given, my migraines have been bad ..read more
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Do We Continue MS Disease Therapy Drugs?
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
6M ago
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 the side effects, lowered immunity, and damage from the intense medication worth the benefit I’m receiving from the drug? Actually, am I receiving any benefits from the drug? That’s the real question. In ..read more
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Could Diet and Holistic Medication Cure MS?
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
6M ago
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 couldn’t walk, was on all this medication and decided that this doesn’t work for her. She became a naturalist and used herbs and tincture to cure herself. I always have issues with people like this fo ..read more
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My beautiful Mary
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
6M ago
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 Boomer, crying on the phone together. I will never forget having to tell her that he passed. Boomer was with her that weekend and passed away the night I came home. It was just awful. Marshmallow loved her ..read more
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Stopping Disease Modifying Therapy Drug
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
8M ago
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 Rituxan on that decline. However, over the last year, I have not stabilized. I got better from leaving the hospital and then continued to get worse from that point. I’ve dealt with so many obstacles over th ..read more
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Wheelchair Isn’t Only For Transportation
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
8M ago
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. Sitting in my chair again I had such relief. I wasn’t so amped up anymore when I was with the therapist and the home medical nurse evaluator. I did explain how it should never have been this long for t ..read more
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Finally Getting My Wheelchair
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
8M ago
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 chair fixed. Today is where I start my next fight. I’m meeting with the occupational therapist that does wheelchair evaluation and the home medical equipment specialist. It’s the specialist that needs ..read more
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Broken Wheelchair
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
8M ago
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 in my wheelchair to do the resistance exercises. I am completely fatigued after I do that exercise program. I can barely get up from the my backup when I have done nothing but fed the dogs. I’d never be ..read more
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My Other Issues
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
9M ago
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 appointment I will find out how I can fight this from ever happening again. Is this the only place that repairs my wheelchair or the only one I was given? The wheelchair is, unfortunately, only one of the th ..read more
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Broken Wheelchair
Multiple experienceS | a day in the life with multiple sclerosis
by Youtwohearts
9M ago
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 in my wheelchair to do the resistance exercises. I am completely fatigued after I do that exercise program. I can barely get up from the my backup when I have done nothing but fed the dogs. I’d never be ..read more
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