Thursday, June 6, 2013

What To Do When There is Nothing Left to Do

So a year ago I was laying in a hospital bed, on my iPad, typing my first official post of "The Sparkled Life".

A year later, I am now at home in my bed, typing on a computer, writing on my own The Sparkled Life domain, waiting to hear back from the same rehab if I'm going back.

What the hell has happened over the past year?  I cant even go into answering that right now.  Im what you would call "fragile" currently.

Two days ago my mom and I ventured up to Cleveland for a visit to Cleveland Clinic's Mellen MS Center- supposedly the top MS clinic in the nation.

We spent the first day chilling with my brother and his gf, very relaxing.  

That night as I lay down to sleep, I started to process the next day, my appointment.  What questions I wanted answered, what "out of the boxes" procedures I thought I might qualify for and the like.  

This is a process I do quite often: focusing on the day ahead and going through the events and expectations.  Its good and bad.  Good in that the days usually go more smoothly.  Bad in that expectations are often shattered, especially lately.  I should stop having any expectations in my life.

Because instead of "we can help", "this might do the trick", "there's a lot of hope in this procedure", I got "you have an aggressive case of MS" and "your symptoms are severe".  "Take this drug...try rehab...if want to meet again, call back in 6 months".  

A dead end.  No hope, no answers, nothing. 

It's not my fault that my case of MS is aggressive.  One day I was perfectly healthy and the next I was diagnosed with aggressive Multiple Sclerosis.  How the hell does that happen?  Why the hell does it happen?  

For MS awareness?  Well that's gotten me far in numbers on this blog but no where with doctors.  Doctors dont like cases they cant fix, they cant answer, they cant help.  Government controls the dollars to research and we all know that's going directly where it shouldnt.  

I can only hope that my story does something in this life.

Do I sound biter?  Perhaps.  Maybe because right now I am.  I dont know whether to try harder, just to have another doctor say they cant help me or whether to just give up and accept this is it.  This is my life.  

So thus we come to title: What To Do When There is Nothing Left to Do

1. Sleep.  This is a great way to not have to process what is happening currently while regaining your strength.
2. Provide a short update so that people dont think you're dying.
3. Focus on your life instead of being distracted by others'.
4. Do things that you love.  Listen to music you enjoy, drink a Starbucks.
5. Remind yourself that you still are the same person, just a little (or rather a lot) broken.  That yes, right now you are stuck between a hard spot and a rock.  But with some rain and wind, that rock might just move a little for some relief.  So wait for that day.  And if never comes, well, at least you tried.

Thank you for your continued support.  A friend reminded me that the amount of people praying and sending positive vibes for The Sparkled Life cant be for nothing.  

So though for now I question where exactly those prayers are going because I'm not seeing them, I "keep the faith" and freaking hope that eventually they will show up.