Saturday, March 3, 2012

Just existing and watching time go by.

Thank you for all the kind comments left on my blog. Sorry that I haven't written or updated in quite some time, I know how frustrating that can be when you've invested time in checking for updates. I've fallen into a bit of a depressing routine as of late. I wake up, check my SSD status, take my meds, eat something, fiddle around on the computer until it hurts too much and then nap until dinner or until Steven gets home at 1 a.m.
I know it's because I'm depressed. I know it's because I'm in constant pain and I don't know what to do about it. I do have hope. I have a new doctor in Syracuse who seems to be a bit better and more responsive than the dipshit I saw in the hospital. She does have some doubts on me taking cellcept though. She said if I ever plan on having children (which is something I can't even fathom at the moment) we will have to consider an alternative treatment. She has agreed to continue the rituximab treatments or at least until she can talk me into taking tysabri. I don't care which drug so long as I'm not the one doing the injecting.
I do have to have another treatment of solumedrol because she thinks my face and bladder issues are due to some inflammation. If that's the case, if it's a home infusion at least I can watch TV or something while they do it.
I also started therapy. No, not physical therapy. Therapy of the mind, folks. That's right, the hospital determined I'm a wee bit crazy and that I need psychological help. But can you blame me? Look at everything I've been through!
That's all that I have to say because my life has become boring and mundane and sometimes stressful.

Friday, January 27, 2012

I gave up.

I gave up and moved back home. So many relapses, so much illness, just so much. So here I am. Here I am back in New York, living in my parents house and under their rules. At 28-years-old, after being independent for 10 years, I'm trying to let it all sink in.

Since leaving Portland I've had a few stints in the hospital, my most recent being this past week. It left me depressed and untrusting of doctors. The doctor I was forced to see pretty much told me it was all in my head and that I just needed to make sure I was making sure I was breathing correctly. This was to avoid the full-body spasms I was getting. Then they discharged me. Meanwhile, I continue to have leg, back and arm spasms which are worse at night when I'm sleeping. They are so bad that I wake up in the morning and am unable to walk. After all of this, what's not to be depressed about?

The good news is that I have an appointment with a SSD neurologist, which means my case is moving along. Hopefully soon I'll know whether I need to appeal or if I get it. I've been talking to my mother about the possibility that if it's approved, of getting a very small dog to keep me company during the day when no one is home. I have a very hard time getting around lately, mostly due to the spasms, so it might benefit me to have an animal companion here. Although, it might be a better idea to look into an actual service animal. I don't know, it's all up in the air.