Swimming-water therapy for multiple sclerosis | Multiple experienceS

I’ve have a MS fitness trainer that I’ve been working with for about a year and a half now. She would come to the house and get my body to move in ways I personally wouldn’t willing force my body to…

Source: Swimming-water therapy for multiple sclerosis | Multiple experienceS

My disabling MS attack in 2014 | Multiple experienceS

It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom…

Source: My disabling MS attack in 2014 | Multiple experienceS

My bedroom equipment | Multiple experienceS

My accessory equipment, is far from limited to walking. I’ve been having problems in the bedroom to, and I’m not talking about sex. I’ve been having issues getting on my bed because I can’t get my…

Source: My bedroom equipment | Multiple experienceS

For the Love of Food: Foods That May Be Helpful For Fibromyalgia Week 3

Reclaiming HOPE

This week, we continue re-visiting the For The Love Of Food posts….

Collage of food with text overlay: For The Love Of Food: Foods That May Be Helpful For Fibromyalgia (And Are Good For Us All) https://reclaiminghope.blog

For the last couple of weeks we’ve started taking a look at some foods that may be helpful for fibromyalgia. If you missed the first two posts, you can find them here and here. I’m highlighting some foods because of the specific nutrients they contain that may help with fibromyalgia, but these are definitely just some of the foods we may want to include in our diets (and whenever I reference diet, I’m just talking about what we eat, not a specific diet). A healthy diet should include a variety of foods. As I mentioned in For the Love of Food, we don’t yet understand how food works synergistically in our bodies to give us all the nutrition we need, and our best bet for getting those nutrients is to eat an array of real foods, foods…

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Circulatory issues possibly Raynaud’s Syndrome

Circulatory issues possibly Raynaud’s Syndrome on Multiple experienceS | So I went to the podiatrist. As soon as he looked at my feet the first words he said…

Source: Circulatory issues possibly Raynaud’s Syndrome

Pictures of what makes me happy | Multiple experienceS

I’m happy to say I’m all done with Ocrevus for six months. I just have to deal, of course, with the side effects from the steroids. I have to be honest too, these medicines and these infusions mess…

Source: Pictures of what makes me happy | Multiple experienceS

No Ocrevus infusion again more insurance issues

I have no words. I’m so frustrated that the only thing I could do was cry. My insurance made some error and terminated me on one of their systems. I knew…

Source: No Ocrevus infusion again more insurance issues

If There Were Olympics For Chronic Illness

Being Lydia!

The Winter Olympics are just about over and I have been enjoying many of the events from the relative comfort of my recliner.

In a few weeks, Korea will be hosting the Paralympic Games for athletes with various physical abilities. These games are just as challenging as the original games and the athletes are just as talented as their able-bodied counterparts.

I got to wondering what the games would look like for those of us with chronic health problems. I am not talking tongue in cheek here so please bear with me for a bit.

First of all, each participant would be given a gold medal for taking part in the games. After all, that is sometimes more than we can handle. All medals would be gold because of the great effort competing would take.

Secondly, there would not be a host city as few of us can travel any…

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Swollen extremities…now what?

Swollen extremities…now what? on Multiple experienceS | Going to the doctor tomorrow. Let’s see what this is all about. My whole weekend I was away my feet…

Source: Swollen extremities…now what?

My Daily Observation – An Update: 2/3/18

It has been quite a while since I have given an update on my life living with MS so I thought I’d share how things are going.  I know for most of your this type of update does impact you, but I do have followers who live with the disease and I want to encourage and support them in any way I can.

Danny's iphone 696

My first day hooked up – 2011

Danny's iphone 698

The infusion happened over 5 days and they leave this in your arm…

Danny's iphone 700

Finally leaving the hospital – 2011

I have an appointment with the neurologist at the end of March to follow-up on a new medication I am beginning in April.  The medication is called Ocrevus and is an infusion I’ll take every six months in the hospital or doctor’s office.  The initial treatment is administered in two sessions, two weeks apart. At each of these sessions, I will receive 300 mg of Ocrevus over an at least 2.5-hour infusion time.

All following infusions are given as a single 600 mg infusion, lasting for at least three hours, every six months. If I have any ongoing infection, the treatment will be delayed until the infection is gone, then the next dose is rescheduled for six months after the last.

This is quite an advancement because the last time I took an infusion it was Solumedrol IV and I had to the infusion at the hospital for 5 straight days every 6 months or so.

As for my symptoms, they are creeping up on me.  Each day I notice something new and it can be a little difficult getting around, but not impossible.  Honestly, I bite the bullet so to speak and put on a good face in public, but most of the time I am experiencing a relatively high level of pain when I walk.  I don’t really say much to anyone except Evelina simply because everybody has problems and I hate making excuses.

Lately I’ve had issues with my right hip and it makes me wonder if the Solumedrol has something to do with the pain.  One of the most frustrating things of dealing with MS is I never know what is medication side effects and what is a MS symptom.

The issues with my hands still exists and like all other pain I am accustomed to hurting so I just keep my mouth shut and keep trudging ahead.

I have noticed lately that I am forgetting things a little more; absent-minded is how I describe the mind issue.   I’m not sure if it is because I’ve been more distracted lately or if it is a cognitive issue related to MS so I’ll keep an eye on it and report to my doctor in March.

Other than that all is well and for the most part I am focused on what I can do instead of what I cannot.  I learned a long time ago that focusing on what MS takes can be depressing and I make certain to keep my mind focused on finding things I can do and then DO those things until I can no longer.  Then I’ll find something new I can do and move forward positively from new adventure to new adventure.

This fight is a marathon not a sprint and I try to approach it as getting better every single day.   Eating better every day.  Walking the dog every day.  Exercising my mind every day.

Always focusing on the positive….the race to the top begins every morning when I wake up.

Danny