Sunday, July 27, 2008 goes

Alright, let me take a few deep breaths here. In....Out...In...Out...

Oops, forgot the Xanax. \_/ o ----- A few more breaths... now I'm ready.

Some of you know that my sister has been sick for a number of years(4+) with a progressive "muscle" disorder that a gazillion doctors could not diagnose. We've been calling it 'the disease with no name', for lack of anything better to call it. She has been through useless and unnecessary surgeries; treatments from A to Z including one where they infuse a blood component called IVIG (and charge her insurance $5000/month); diagnosed with ulnar nerve compression, carpal tunnel syndrome, herniated disks, ms and various other muscle disorders, arthritis, lyme disease, tumors, a number of different autoimmune diseases and everything around, about, and in between except for what they have now decided she really has (and what she says she knew in her own mind that she had all along and had asked MDs several times about).

ALS, sometimes called Lou Gehrig's disease. And now that they took so long to come around to giving her the correct diagnosis, she is near the end stages of the disease where it has started progressing faster and we will be lucky if we have another 18 months with her.

It is never easy to hear about terminal illness of a loved one, but this is a particularlarly insidious disease. I have provided a couple of links above in case you don't know much about it.

She does have a live-in boyfriend, but she will be requiring an enormous amount of caregiving. I am not really in a state of mind to make major life decisions, but I am 99% sure that I will be moving to Seattle to help him care for her AND to spend as much time as I can with her, for however long she has. Besides being my sister, she is truly my best friend, and if it were me who were ill, I would want her near me.

I'm worn out, and the Xanax is kicking in and I'm falling asleep. I'll post more when I can.



Anonymous said...

You may want to make sure that she sees a Speech Language Pathologist so that she can get a communication device if she loses the ability to speak. They are normally paid for by Medicare or private insurance. Companies like DynaVox Tech can help with the funding paperwork.

Cat said...

Thank you. I was wondering what kind of communication aids are out there. As a lawyer, it would really depress her not to be able to argue her twisted logic with us.


Anonymous said...

Cat - I posted something here yesterday but maybe it didn't post for some reason.

I'm so sorry to read about this. This is a very tough time for you and your sister. My thoughts are with you.

Jos said...

Hola Cat-

Sorry to hear about your sister.