Sunday, April 10, 2011

Moving on

Well, it's been awhile since I've posted.  In case you're wondering, I'm still alive.  I didn't go jump off a cliff after my last overly depressing post.  In fact, I am doing much better.

Today I got some excellent news for a change.  It's been awhile since I've known what really good news feels like.  Granted, I was relieved when I finally got a diagnosis.  However, that may have taken a huge weight off of my shoulders, but it was far from good news.  So did you want to know what the good news is?  I didn't think so.

But I'll tell you anyway, because I want to.  This morning my husband came in and woke me up at 7am.  For the old Robin, that was not early.  However, for the mito Robin, who doesn't sleep well and usually doesn't fall asleep until 12 or 1am, that's very early.  BUT... I was okay with it because he woke me up to tell me that I had a large amount of money deposited in my account yesterday!

I was approved for social security disability income (ssdi)!!!!!!!!!!!!!  Hale-fucking-lejah!  That's my version of the religious song "Hallelujah".

So not only does this news lift a HUGE weight off of mine and my husband's shoulders, but it is excellent news.  And, to make it even better, they paid me back pay.  That's why there was a large deposit made to my account. (I had given them my info so I could use direct deposit if I was approved.)  Since ssdi is still no where near what I was making prior to becoming sick, the back pay will help us tremendously with whatever bills we still need to pay after my husband's paycheck and ssdi.

I am so freaking happy!  I think I deserve to celebrate.  What do you think?  I think that I deserve a massage.  Sound good?  Yeah, that's what I thought.

I would think that that would be all the good that will come to us for a year or more.  (I hate using two of the same word right next to each other in a sentence.  It looks funny, but it's right.)  However, I was actually happy about something else yesterday.  I know, right?  Two things to be happy about in two days!  It's just not possible!  You would think so, at least, based on my recent history.

In order to tell you the other good thing, though, I will have to start with the typical bad.  Sorry, just bear with me (or, if you're my husband reading this, then bare with me).  Anyway...  My pain has been unbearable (there's that word again) over the last week.  I don't know what triggered it, but I have been having excruciatingly sharp pains in my left leg and right chest.    I called my pain management doctor to make an appt.  They couldn't get me in for 2 weeks!  That would be fine if I was just going in for my standard appointment, but I needed to get in quickly because nothing I was doing was helping my pain.

I decided to call someone else.  My mom recommended someone to me and I got in within 2 days of calling to make the appointment.  So that's part of the good news.  When I went in to my appointment on Wednesday, I was overwhelmingly pleased.  This doctor actually knows what mitochondrial disease is!  And not just from learning about it in medical school in 1918.  He has actually done a study, or presentation, or something on the effects of Propofol in patients with mitochondrial disease.  Not only is he knowledgeable, but he's kind as well.  Double bonus!  He changed my pain medication to something sustained release (slowly released into the blood stream over time), in addition to something for breakthrough pain.  He is going to start me on a different medication to help me with my myoclonic twitches as well (muscle jerking/twitching).  Those have been really bothering me, especially at night when I can't sleep because of them.   And instead of throwing a prescription at me and saying "come back in 3 months", he discussed many different options for almost an hour and told me to come back in 2 weeks so he can assess how I'm doing with the new medications and change something if need be.  After being in excruciating pain for the last week or more (I've had a lot of pain for a long time, but this last week has been awful), I'm so happy to have hope that someone is going to help me get it under control.


You might notice some things on my blog changing over the upcoming days/weeks.  I am currently working on a few changes.  I am adding some additional pages for more information about what mitochondrial disease is, how you can help, and others.  They are currently under construction, but please visit those other pages on occasion as I will be updating them soon.

I will also be getting back to you all soon as I am in the beginning stages of organizing a fundraiser.  I would love your help!  More information coming soon.

Spring is here!  Get outside!  I have.  :o)

3 comments:

Bibliotekaren said...

Robin,

A bittersweet congratulations on the ssdi. I know I was very relieved yet simultaneously it was a bit of a head trip.

Oh, your pain doc sounds like a dream. As pharmaceutical intervention is always a delicate house of cards, how nice that he wants to follow up early before things stray. Hope the med change works well. And, for the myoclonus too. Mine doesn't keep me awake just adds to my conspicuousness.

A little over two weeks for my Texas neurometabolic trip!

Take care,
Donna

Todd said...

Wow, finding a doctor like that is one in a million.....by far the best news you could get. I'm so glad things are working out for you now. The blog looks very cool.

Brad Post said...

After a long and overwhelming process, you finally received the approval of your SSDI claim. This was great news indeed! With this, you can finally rest easy knowing that you''ll get all the medical care and treatment you need. Plus, it can definitely help with your other expenses. I hope you’re doing well now!

Brad Post @ Jan Dils