Wednesday, May 17, 2017

My Final Diagnosis

September 2016

It was the 13th day of the month when I got my firm MS diagnosis. My husband went with me and was patient as I asked a billion questions. See, I'm an education seeker. I want to know all the facts about everything before I jump in with both feet. I ask, I get answers, I compute, and I ask other things about what I was just told.

Before my doctor even told me it was MS for sure, I'd already gathered as much information as my brain could handle. I found an amazing website called My MS Team. Clicking the link will take you there. It's a plethora of educational resources.

Anyway, as we sat there in her office, I felt the dark cloud move over us.

When she said, "You have RRMS." I was kind of relieved. I was worried she'd give me really bad news and say it was SPMS or PPMS.

There are 5 kinds of multiple sclerosis: 

  • RRMS - Relapsing Remitting
  • SPMS - Secondary Progressive
  • PPMS - Primary Progressive
  • PRMS - Progressive Relapsing
  • Pediatric
You can do a quick internet search to see why they differ. You'll also see why I was somewhat relieved.

Of course, now we're going to talk about treatment, and this is where I got rather squeamish.

You see, I'm flat terrified of needles.

Guess what the primary treatment (as of right now) is for MS?

Yep. Shots.

I was assured that I'd never have to see a needle coming at me. They were right about that. I'll tell you now what meds I take every week (and for someone who was loathe to even take a tylenol when needed, this was a huge lifestyle change).
  • Vitamin D - daily
  • B12 - 5x per week
  • Vitamin B1 - daily
  • Folic Acid - daily
  • Copaxone - 3x weekly (M, W, F) - this is the injection
So, I cowered in fear for about twenty-four hours while I waited for the nurse to come and show me how to use the tools the company provides.

I'm not sure it's really sunk in, still, that I have to do this three times a week EVERY WEEK until I die. Like, I hear it, and I type it, but I don't think the enormity of it has hit me yet. I mean, shouldn't I be in a corner somewhere bawling my friggin eyes out?

Yet, I've forged ahead.

As I progressed through trying to get the depth setting for my shots figured out (I've had a few pain issues with the injection sites as well as other things), my husband continued to go to the doctor and have blood work, and he kept getting scans monthly.

December 2016 was a month for the record books, and everything has gone kinda nuts since then.

This is where his journey leaps off a cliff and screams, "Geronimo!"

I'll get into that tomorrow.

If you're an MS warrior, what medication do you use? Is there a reason you chose it?

Until then.

Heat + MS = BLEH

June 2017 We had a fantastic five days in Florida, but let me tell you what, 96 degree weather and MS are NOT good bedfellows. I was kind ...