Hopeful Ramblings

I'm alive...I'm alive!  Of course, you simply must read that in your best Mary Shelley's Frankenstein voice to get the full effect!  Don't forget to raise your shaking fist in victory while muttering the words.

 

 

Sorry, it's been a while.  I've been busy with the kiddos, school, dance, summertime fun - LIFE!  Today I have a little "I'm-bored-must-write" time, and while I should be working on a larger writing piece I found myself here instead.  I know I've touched on this before but I felt compelled to do so again.

 

 

Today I read another blog about being chronically ill and how one deals with it/what one's life is like because of one's illness.  One thing which struck me, regarding her article, is that she said we rarely have hope.  I include myself in this 'Chronic Illness' category, because for anyone who isn't already aware I have a chronic, at times debilitating, illness called Myasthenia Gravis.  My-uh-what?  I get that a lot don't worry, just smile I nod.  (That's what I do when someone tries to sell me on the fact that "if you just exercise more you'll be okay", or "if you try this diet you'll never have My-uh-whatever it's called again".)

 

 

I also have hope.  Maybe I'm the rare chronically ill person who clings to that short yet heavy word: HOPE.  I have the word dangling from my 'ultra cool, you wish you had one too' medical alert bracelet.  I have the word bedazzled on a pair of nice comfy sweats (Hey, don't hate!  They one of my best pair of stretchy waist pants!)  More importantly, I have hope in my heart.  Not the organ, thump...thump...thumping away, squishing and swishing the good stuff (no, not boxed wine!) around.  My gushy, lovey dovey, all my hopes and dreams lie here, heart. 

 

 

Right now, I'm on an upswing on the MG roller coaster.  While I'm riding the roller coaster being pulled up to the crest of the drop, I hope the drop is slow, shallow and not as harsh as the last.  I don't dwell on the fact that few of us secure a permanent remission.  Instead I appreciate that today I'm okay.  I hope tomorrow I am.  If I'm not, I'll keep hoping.  I'll pray for the cure, I'll believe in the fact that there are some who are completely in remission, not relying on medicines to keep MG at bay, and I'll hope for that too. 

 

 

I hope that I'm around long enough to see our kids grow into beautiful, caring, overall wonderful adults (as they're all those things, and more as children).  I hope that I'm around long enough to see them graduate from school.  After I surpass that, I hope to see them graduate from college.  That as they grow with their own partner in life they are happy and welcome their own children into this mad world - and I hope I'm around to witness it. 

 

 

Hope. 

 

 

We should all hope.  Hope for the cure to our antagonist: MG, but appreciate the journey we're on, because after all, we are still on a journey.  Without hope, I fear one may become depressed.  Feeling as though you're treading water only to be pulled down deep into the murky waters below, weights clasped onto you pulling you yet further, forcefully into the deep darkness - that's what I fear a life without hope may be like.

 

 

As an aside, my husband got a glimpse of what MG is like when he had surgery recently.  He came back from getting a nerve block and said he couldn't raise his arm the whole way though he tried very hard to do so.  Later he got choked and was unable to swallow (gave the nurses a bit of a fright also!) and had to spit out the liquid they had him try to drink.  As the nurse went over possible side effects:  choking, unable to swallow, drooping facial muscles, muscle weakness, fatigue, etc, I laughed and said "Oh, honey!  You're becoming a Myasthenic!"  The nurse just looked at me a little perplexed (I get that a lot) as he and I laughed. 

 

 

Hope - don't lose it, whether you have a chronic illness or not.  Thanks to those who read my ramblings.