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Starting the process for my next infusion-changing from Ocrevus to Rituxan

Starting the process for my next infusion-changing from Ocrevus to Rituxan

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I am due in March for my full dose infusion of Ocrevus. A process that has never run smoothly and has caused a lot of aggravation. https://multipleexperiences.org/2018/09/13/no-ocrevus-infusion-today/ https://multipleexperiences.org/2018/09/21/no-ocrevus-infusion-yet/ Those blogs were only my issues with the last time I had the infusion. I had issues every time my infusion was scheduled. Now I’m going back to Rituxan at the full dosage. Rituxan which is technically not approved for MS but I’d prefer to be on for safety reasons. I’ve explained…

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Stomach bugs with MS bladder/bowel issues

Stomach bugs with MS bladder/bowel issues

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Ok warning I’m going graphic here because I need to be honest and there is no other way. I have bladder and bowel control issues. For my bladder I take Toviaz which helps me not have accidents but when I have to go I have a very short window of time to make it to a bathroom. Without this medicine I have NO window of time. My bowels are completely different. I can’t take anything and have no control over…

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Spiritual Session Saturday-Being Happy

Spiritual Session Saturday-Being Happy

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This week is about being happy in the place you are in today. I wrote a blog this week entitled my life today. https://multipleexperiences.org/2019/01/29/my-life-today/. When I’m writing a blog sometimes I don’t know exactly where my blog is going, the words just flow themselves. This was one of those blogs. I had a comment on the blog from someone that simply said “This blog brought me joy”. My reply was, “me too”. When I was writing the blog about my…

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A sleepless night

A sleepless night

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I’ve been up since roughly 4 AM. I couldn’t even tell you why. I think I’ve watched an entire season of friends before I finally gave up and got out of bed. I suffer from headaches all week this week I’ve been home for three days because my aid’s son was sick. I’ve watched a lot of Netflix including part 2 of Making a Murderer, the Staircase and the Ted Bundy Tapes. I worked out every single morning even with…

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Tony Horton P90X, here I come

Tony Horton P90X, here I come

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It’s been a while but I’m coming back to my P90X workouts from Tony Horton at Beachbody. https://www.beachbody.com. I have been a fan of Beachbody and their trainers for a long time but my favorite was always the P90X routine. I had these great bowflex adjustable weights These weights were great you could dial them from 5 to 52 pounds each. This was wonderful when I could lift a 20lb press or do squats with 30lbs in each hand, not…

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My handicap van update

My handicap van update

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I thought I’d write a blog on the update on my van. Unfortunately, I did not get as much in grants as I was hoping for which was somewhat disheartening. It was my own fault because I just got a number in my head that was delusional. I was able to secure $5,300 in grants from the MS Foundationhttps://msfocus.org/ and the MS Hope Foundationhttp://www.mshopefoundation.org/. I was denied from the Chive Charity https://chivecharities.org/ and the National Multiple Sclerosis Society doesn’t do…

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My life today

My life today

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I never thought at the age of 47 this would be my life yet I remember being scared when I was diagnosed of being in a wheelchair. I knew what multiple sclerosis could bring about and I feared that when I hit the 10 year mark everything would go downhill rapidly. That wasn’t the case because there were medication developed that helped to slow down the MS progression and more and more have been developed. My life took on a…

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Monday madness

Monday madness

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First time back in physical therapy today. I should get double activity points on my Fitbit from this and it registers as nothing. I was there for almost 90 minutes and it’s all exercise that it so difficult to do. I mean I’m struggling doing leg lifts with a 2lb weight on my ankle. My sit to stands needed assistance from the therapist so I could either get up from the chair or not fall over once I’m standing. Then…

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Multiple sclerosis set to mild for the week

Multiple sclerosis set to mild for the week

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I’ve had a week to rest since my vacation and I have to say I needed it. I did do my Beachbody Cize workouts every morning. I did get food delivered and cooked. I did reorganize myself,but other than that, I rested. Today I’m going to occupational therapy. This is the easier of the therapies for me because it doesn’t normally wipe me out for the day. I can’t complain my MS symptoms have been somewhat mild this week. Yes,…

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Ocrevus, Rituxan not new drugs

Ocrevus, Rituxan not new drugs

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I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news? I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That…

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