It’s Been a While. But, I Have a Good Excuse! I’ve been pissy!

I know … it’s been a while since I’ve written.

I could tell you “I’ve been very, very busy.” But, that would be a lie.

I could tell you “I just don’t know what to write about.” There’s some truth in that, but mostly a lie.

I could tell you “I’m pissed off! I’m so aggravated I don’t even want to think about it”. Now, that would be the truth!!!!

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* * * * * * * * * * * * * *

The end of July I traveled to Tampa for a week’s visit with my mother. I was due to go on to Dallas for Mary Kay Cosmetic’s annual Seminar.

Getting through the airports was relatively easy as I requested wheelchair transport.

After being in Tampa Bay for just a few days, I found it extremely difficult to accomplish most tasks. Complete exhaustion ensued if/when I pushed myself. Pushing myself really wasn’t an option because I didn’t have the strength or energy. I didn’t even get to shop at my favorite stores!!!!

I questioned continuing on to Dallas as the weekend approached. By Sunday, I knew I would not be able moved forward with the remainder of my trip.

Even though I didn’t play outside, the heat was overwhelming. Temperatures in Dallas were 10˚ – 20˚ higher. I couldn’t risk complete debilitation being over 1500 miles from home. I cancelled the Dallas portion of my trip and returned to New Hampshire. It took every ounce of energy I had and several days to regain stability.

Let me tell you … It was very frustrating to experience this! Since being back, I honestly haven’t felt like doing anything! I haven’t done anything other than grocery shopping and doctor visits. Truth be told, I haven’t wanted to talk to anyone either! I’ve been in a pissy mood!!!

Pissy because I’m not able to do the things I used to do! Pissy because I have this stupid disease!

Why …

Why …

Why … is there not a cure for this disease?!?!?!?

It’s just absolutely ridiculous there isn’t a cure!!!!

Cancer can be cured, yet MS can’t because there isn’t one! [Please don’t get me wrong, it’s absolutely amazing cancer can be cured. I’m very happy many patients are fortunate enough to be cured.]

Yes, there are drugs that can greatly diminish MS progression. But that’s it.

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After being on drug #2 (via IV infusion) for six months, I am still experiencing difficulty with balance and walking. Sure, I can walk throughout the house and to the mailbox without assistance. Outside of home, though, I must have some sort of support – shopping cart, rolling walker or my husband’s arm.

Alright … I’ll say it …

I WANT TO WALK NORMAL WITHOUT ANY ASSISTIVE DEVICES!!!!!! It should go without saying … I WANT TO DANCE WITH MY HUSBAND!!!!!!

I’ve been in physical therapy for several months working on balance. Sometimes I think I’ve improved but then I run into walls or stumble, almost falling. Then I feel like I’ve taken 10 steps back – figuratively and literally!

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At my last appointment with Dr N (MS doctor), we discussed changing to a new MS med – Lemtrada (IV) or Gilenya (oral) – due to diminished strength, balance issues and walking difficulties. He’s concerned my current med – Tysabri – isn’t working because I have antibodies. We’re waiting for lab results.

Thinking about a new med is mind boggling! There is so much information! There is so much to weed through.

I have another appointment with him in a couple weeks. I still don’t know what to do.

Okay … okay … I admit stopping for a few minutes to think about what’s been happening and writing about it has helped.

I guess I should be more diligent about writing!

Thanks for reading!

V

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