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…

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

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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

 

Danny’s World: Disney’s Right Around the Corner!

DannyIn one week Evelina and I will be putting the final touches on packing and getting ready to head to Florida for her birthday Disney trip.  To say we are excited is an understatement!  For me the holiday will be well earned as I have busted my tail to hit some of my goals before the end of the year.

For those of you who might be new to Dream Big, Evelina is from Poland and dreamed of going to Disney since she was a little girl.  So in 2012 I proposed to her in the rose garden (no longer exists) at Magic Kingdom beside the castle during the fireworks show.  It was incredible.  We then honeymooned at Disney, spent our first anniversary at Disney and family vacation at Disney.  We are a Disney family to say the least.

It will be nice to get away for an extended time and I cannot wait!!

DR

Meet Multiple experienceS!!

E1DE85C4-CEF2-40D1-AEC3-48D70EDB20D4

I needed to try new recipes this week now that I joined weight watchers again. It is difficult to be vegan on weight watchers and staying fully vegan might come to an end, but that’s for…

via Coconut Bean Sprout Curry-Plant Based on a Budget | Multiple experienceS

Danny’s World: Medicine Can Be Scary

DannyToday I have an appointment with a big client so I’ll be getting ready for that.  On an unrelated note I had a really bad reaction to a medication last week that was scary.  While I was driving home from an appointment I developed a shaky eye that wouldn’t focus properly.   The issue lasted for about 5 minutes and then went away.

My doctor has now called in a new medication to help me with a little anxiety issue I’ve developed due to the MS.  It is funny that a lot of the people I know who live with MS develop anxiety issues.  I guess it has to do with the sensitivity to noisy environments and/or the stress of constantly being in pain.

At any rate I’ll start the new medication today.

When Your Visible Illness is Also Pretty Invisible

Tripping Through Treacle

It’s Invisible Illness Awareness Week! Well, only just – it runs from the 15th to the 21st October 2017, so it’s ending today and I’ve almost left it too late to write anything. I’m back atworknow, so it is much, much harder to keep to writing a weekly blog post, which is what I strive for.

The past couple weeks have been full of work, taking the kids to their after school activities and… well, that’s it. But that isenough. I’m done in – and don’t I know it. I have come down with a cough and ongoing headache and I’m back to falling asleep on the sofa as soon as the kids are in bed. That’s work when you haveSecondary Progressive MSfor you. But you know what? One of the most frustrating things is that, on the outside, people see my dodgy leg…

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Monday Musings

Jo Ann Maxwell

“We need never shout across the spaces to an absent God. He is nearer than our own soul, closer than our most secret thoughts.” — A. W. Tozer

“I have held many things in my hands, and have lost them all; but whatever I have placed in God’s hands, that I still possess.” — Martin Luther

“God will not look you over for medals, degrees, or diplomas, but for scars.” — Elbert Hubbard

“I know God won’t give me anything I can’t handle. I just wish He didn’t trust me so much.” — Mother Teresa

“Peace if possible, truth at all costs.” — Martin Luther

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Cutting the cord meditation

Cutting the cord meditation on Multiple experienceS | Back in June, I went to the Spirit Junkie Masterclass which was the most amazing spiritual high I was…

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I Am Enough

Tripping Through Treacle

‘You’re really good at taking care of us, Mum’. A simple sentence, but when my little boy said it to me after he fell and cut his leg, I felt absolutely amazing.

The number of times I’ve felt like a crap Mum, because I can’t run around with my children any more or because I’ve made them pasta for tea yet again because it’s the easiest thing for me to make, is in its hundreds. I guess it is all part and parcel of being a spoonie parent, due to my Multiple Sclerosis. But my son’s comment just goes to show that the simple act of having a pack of baby wipes so that you can easily wipe off dirt and gravel from your child’s scuffed leg is what really matters to them.

I think every parent feels the ‘guilts’ and I have written about it before. But…

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