2 Months after DX

I am definitely feeling a little overwhelmed right now… just 2mos. since the Dx, at least 6mos. into a worsening exacerbation, and I took it all — MS, my chronic symptoms — as “just another thing” to be dealt with. I was confident that going back to work the following Monday was absolutely the right answer — I didn’t want to change a thing about my life. In my mind, my life would still proceed exactly as I intended, MS or not. I guess the IVSM made me feel invincible, gave me a little too much of that “Pollyana” outlook… of course, I’ve spent over a decade shrugging off symptoms like an optimistic, blonde child. But, as per the Wikipedia plot summary, Pollyana’s “robust optimism” hit a downward spiral.

Getting up from (yet another) fall and being blind? Yeah, I’ll call 911 but since my vitals were fine, I figured I just needed to sit it out. Someone said to me yesterday, “You know it’s not… normal… to get up after a fall and be blind, right?”

I realized it had felt normal to me. I’ve been living with this disability for so long without knowing there was a disability there, that I still didn’t really comprehend it until yesterday. Ten years of “oh-I-must-just-be-crazy” to things like horrible nerve pain and paralysis, five years, now, of blaming a bad ER doc’s misdiagnosis. And another three more years of seeing doctors who didn’t assume anything was wrong with that diagnosis. Dismissed by my ENT during the beginning of the last exacerbation with seasickness patches, despite every test for vertigo (nystagmus, etc) clearly showing I was not experiencing vertigo.

Of course I assumed life expected me to just go back to work. My job, where I didn’t even know what a terrible job I was now doing because of my vision and trembling hands. I wasn’t going to let MS change me — “I have MS, it doesn’t have me,” right?

This is the first time I just can’t take comfort in that statement. I’m scared, and I don’t know what to do with my life right now.


Catalogue #1 – The week of discovery

04:40 pm July 5th, 2008

I tried to mow the a\lawn,. Within 5 minutes I’d broken the weed eater and had falllen in the street, When I got up, my vision was so blurry that I barely made i t back into the huose. I am on Craigslsit now looking for a lawn service and crying because of course no doctors offices are open and I can baelly see the sccreen to \type this,. I don’t know what’s wronfg but I am not okay.

I’m scared.

09:12 pm July 5th, 2008

Thank you, thank you to all the well wishes I got today — especially for the call from Beth, too. I had to avoid calls while the paramedics took my vitals. Yep, I called 911. And then apologized profusely to the medics while they checked me out. I mean, I knew there was nothing they’d be able to do, nor anyone at the ER. My blood pressure medicine might be at too high a dose now that I’m less heavy — I’ll see my PCP on Monday to get that looked into. A friend came by after the medics left and drove me to pick up a dinner I didn’t have to cook (advice from one medic — “I’ve done weight watchers too, but maybe just today, don’t watch points. Just eat.”).

I have sworn to not mow any lawns, go outside, do much of anything but remain still with my head in one direction. I’d like to spend a lot of time doing that in froint of the computer, but I’m still reading/typing with one eye open. So… movies? I guess I’ll check what’s on Demand.

Again, thank you.

July 8th, 2008

I was admitted to the ER on Monday morning. I had an MRI, and was admitted by Monday afternoon. There are over 40 lesions on my brain, and I am experiencing (broadly) widespread demyelation. The most likely diagnosis will be Multiple Sclerosis. I won’t know for certain until the hospital neurologist looks at the fluid from today’s spinal tap. My parents have already visited me in the hospital (from Summerville), and my best friend is flying down on Thursday to stay with me over the weekend while Ang goes to ABW in New Orleans.

Since Monday night, I’m on a nightly steroid drip, which has already improved my vision (and earned me two insulin shots). It’s running through me now, and I’ll probably be asleep soon re: ambien.

It’s so important for you all to know that I am not upset — I’m happy to finally have a real diagnosis that was neither “psychosomatic” nor a death sentence (by any means), I was not particularly surprised, and more than anything am deeply, deeply humbled by the amount of support and love so many have given so freely, so soon. THANK YOU.

I will post more, openly, later… when I have an “official” diagnosis, and probably only pic posts from me until then. Or, at least until I have a real keyboard in fromt of me. 🙂

Again, THANK YOU. Truly, I feel grateful and am in better spirits than you might expect.

July 9th, 2008

MS is the official diagnosis, but my vision has gotten back to 100% (sans glasses) with the steroid drip. After three days of steroids, my exacerbation seems at an end, so I just signed my discharge papers a day early!!!!!!! I get to leave after I get dose 3 of steroids with/right after dinner. I GET TO SLEEP IN MY OWN BED TONIGHT!!!!!!!!

Ang and Trish will be here between 7:30-8pm to pick me up. W00T!!!!!!!!!!!!!!!!!!!!!!!!!!