Monday, April 9, 2012

An anniversary beyond my wildest hopes...

This Saturday was no different than any other Saturday that I can recall these past few years. I awoke to drink my coffee outside, enjoying the coolness of the morning and the sun on my face. I listened to the birds singing, and watched the squirrels scamper around. My cat sat smiling and blinking contentedly beside me on the top step of the porch.

I spent some time with my new hobby (read: obsession) sewing, and whipped up a couple things.

Later I ran errands, ran around Super Walmart and got a few last minute things for Easter, and later took a stroll up the dirt road we live on, just to enjoy the day.

What's so amazing about all that you ask? Sounds like a normal Saturday to you, doesn't it? Well, five years ago on April 7, 2007 you couldn't have convinced me I would EVER have another Saturday like that. A Saturday where I may not even think about having MS if it weren't for remembering to take my Gilenya. A Saturday that felt *normal* in every way possible.

Five years ago this past Saturday was the day I awoke to numbness and burning in my legs. I stood up and the room was spinning. My brain was fogged. I had one panic attack after another. That was the day of the start of my last MS relapse.

For the next two months I would continue to be miserable. I remember lying on my back in my bed, home alone. My son was at school and my boyfriend was at work.

I wanted to die.

I was so sick of the unpredictability of my disease and the random way I'd have symptoms so odd even my doctors gave me strange looks. I think this was also the MS attack that had me feeling like my left hand was on backwards. When I would think of my hand, I could sense it was palm up with thumb on left. I looked down and it was knuckles up with thumb on right. Being left-handed was not an added bonus at this time while I tried to get used to my hand feeling so weird.

I drove myself to the ER twice the first week of that MS attack. Both times I was certain I was having a coronary, only to discover that while I waited to be seen by the triage nurse that all my feelings of distress subsided after 30 minutes or so.

These were the first of many panic attacks I would suffer during the MS relapse. I saw my primary care doc who prescribed Xanax for me. I carried them around like a binky. Like a favorite old teddy bear that I couldn't even part with long enough to wash. This was my life line to sanity. All I had to do was feel my scalp start to crawl and my breathing get fast and shallow while  my pulse pounded and my hands glistened with sweat, and I took a quarter of one of those pills and it brought me back to the safety of a calm place without any other obvious side effects.

Heck, it could have been a sugar pill and as long as the doc told me it would rescue me from a panic attack, I bet it would have worked.

Anyhow, I remember laying there on my bed, looking up at the ceiling and telling myself why it was a bad idea to kill myself. All the people who would be hurt. All the people who loved me. All the people who needed me...

So I didn't. But I was THAT close. I remember.

I'm sure a lot of you MSers who read this who have had this nasty disease for any length of time have probably had that same discussion with themselves. The silent reasoning about why we should continue to keep our chins up and endure.

That was my last MS attack (KNOCKING WOOD FURIOUSLY!!!) and I have finally quit holding my breath and cringing, waiting for the other shoe to drop. I'm sure I will have another attack.Don't know when, but I'm not naive enough to think I'm cured or anything like that. When it comes, and I'm sure it will, I will accept it, deal with it, and move on. Hopefully it won't be a doozy like the ones I used to have, and hopefully I can weather the storm with grace and patience.

I am just SO GLAD that I chose not to give in that day.

I made that choice at the fork in my road. To look behind me that day, all I saw was frustration, pain, misery and hopelessness. Ahead, at the time, all I could see was more of the same. What I didn't see was that just around the bend there was the most miraculous of opportunities.

That was the MS attack that sent me to my primary care doctor who finally got fed up with the fact that I had been on autopilot with no neuro for two years and he chose his own fork in our intersecting roads. He chose to get proactive and insist I see a neuro and made me an appointment with one before I left the office that day.

Turned out the neuro was the one who got me into the TRANSFORMS clinical trial for FTY720 (aka Fingolimod aka Gilenya) and I have never for a single moment regretted it since.

To me, that trial and most of the last five years have been nothing short of miraculous.

I feel so much better today. I lost my canes for several years -- since I didn't need them I didn't know where they were -- and only rediscovered them when I went deliberately in search of them to aid me in air travel. Anyone who has gone through Atlanta will agree it might be a good thing to have your hiking gear.

I haven't had a panic attack since that time, although I admit I've come close on occasion, and my legs feel normal. No burning unless I overdo it.

I am active, I am happy, and most of all I can take care of all the family members who so depend on me.

So Happy Fifth Anniversary to me!! Get out the party hats and blowers, people! It's a big celebration and you're all invited.


  1. HUGE congratulations!!! This post put a big smile on my face. Because I do know exactly how you feel. Huzzah for Gilenya!!

  2. Mega congrats of the yay and WOW kind and excess abundance of exclamation marks to mark such an impressive occasion !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Ta for sharing

  3. I loved reading this!!!! I am currently waiting to start a Gilenya trial. It should *fingers crossed* start within a month. I'm currently on Copaxone and it's worked great, however, I'm running out of places to inject because of lipoatrophy. I've seen your comments on the Gilenya facebook page so, between that and your blog, I'm way excited to start Gilenya!


Note: Only a member of this blog may post a comment.