the aftermath of diagnosis

It's now been 3 weeks since I was diagnosed. I can sum each week up as such:

Week one: Spinal headache hell.

Week two: Emotional wreck.

Week three: Happily married.

It took me a few days of complete agony to learn that caffeine was the cure to end all spinal headaches. I've never had a migraine and I have a great pain tolerance, but this kept me flat in the bed, unable to focus even on watching TV most of the time. My only saving grace was that, somehow, my higher power (yes, I'm starting to believe) knew I was struggling and decided to air two of my most favorite TV shows - ALF and 3rd Rock from the Sun. It was one of the few things that could bring a smile to my face, and maybe even a chuckle. Lame, you say? Well, I'm quickly learning that it's the little things in life that make it all worthwhile. Georgi and I went to the beach later in the day after all the testing was over.

It's hard to know what to do or think after being told normal progression is 2-5 years. 2-5 years? Are you kidding? So maybe I'll make it to 30, but probably not 35? What. The. Fuck. My first thought was, ok, wheelchair confinement for life. I can handle that. I glossed over the part about eventual respiratory failure. I broke down in tears reading it, and Georgi quickly followed. Our relationship is just beginning. We had plans for babies and late nights working homicides together. Having grandbabies one day and having sex in a nursing home when we're 80. Now they're telling me I won't even see 35? How can this be? They must be wrong. They have to be. Fortunately or unfortunately, the spinal headache kicked in the following day and I could no longer focus on anything in my life save for the feeling that my brain was going to explode. Dr. Paschall equated it to "brain sag," by reducing the amount of fluid the brain floats in, instead it just sinks and sags. I was able to spend a few days in complete oblivion about my diagnosis, and about everything else going on around me. Yay, brain sag!

I was itching to go back to work. And quite a bit scared. My emotions had been bubbling at the surface and it didn't taken much to send me over. Still, I needed to get back to work. Money was tight and I couldn't spend my life dwelling on what may be to come. The first night was ok. I only cried once. No one knew, other than my boss, but everyone was aware that I had missed a bit of time and that something was going on. I don't trust people easily, and while I view my many of STICU colleagues as a sort of extended family, something like this drastically changes the way people view me. I confided in only a few, but even that felt like too much. I don't handle coddling well, I don't always know the proper way to accept sympathy or offers of prayer, and I don't like being treated like I'm already handicapped. In reality, I was having a lot of trouble talking about something that I haven't yet completely accepted as reality. To top it off, everytime I wasn't able to do something, whether it was lift a patient's arm or help to turn, I was instantly depressed. Whereas before I just thought it was strange that I couldn't do things the same way I used to, this time was different. I now knew why I couldn't do these things. Knowing the reason reminded me what the reason ultimately meant for me. And then came the waterworks while simply trying to put a patient's arm on a pillow. I started longing for ignorance.

The most difficult part of all was, and is still, waiting. I'm given a diagnosis, told that it's just too devastating for the neurologist to finalize, and then am expected to wait until I'm eventually called with my appointment for a 2nd opinion. Wait and do what? Go on with life? How? How do I go on with life when life is what I've just been told I have in limited quantity? What do I do? What do I tell people? Yes, fellow nurse, I'm crying because I've been told I probably have this terminal illness but no one will tell me for sure for another 2-3 months, yet in the meantime my function continues to worsen. I'm usually pretty good with math, but lately I've become lazy, so I haven't tried to equate what 2-3 months means for someone who's been told they have 2-5 years left. What I can say is that it's a pretty long fucking time.

Once again, at the point I had reached ultimate despair, my beautiful live-in social worker came to the rescue. Georgi called the ALS clinic at Duke, where I would be getting my 2nd opinion, and explained to them everything that I had been going through and asked a lot of questions. They gave her a lot of information that was eventually able to put me at some ease. My appointment is scheduled for December 2nd, and I'll spend a day in the clinic meeting with a variety of specialists to confirm my diagnosis and give me treatment options.

At least then maybe I'll know whether I should be coming or going or staying or flying or diving or whatever else this disease wants of me. Or what I want of myself.