Friday, January 11, 2008

Okay. Bullshit.

If you've seen the movie, "How to Lose a Guy in 10 Days," you're familiar with the game the couple played with his parents at their Staten Island house. If you haven't seen it, the game is called Bullshit and basically was a call-your-bluff kind of game. Well, I'm calling bullshit on myself. The list of 10 Things on My Mind Today had only a surface acquaintance with what's really on my mind.

I'm thinking of starting another blog that can morph into a book about what life has been like for the last 10 years, since I first learned that my daughter was hearing voices, cutting herself, and seeing things that weren't there. If you read Poetic License you will see very little of what has really happened in my life to bring me to this point, because I'm not yet ready to open my private life to the world. What you have and will continue to see here is my wry wit (when I'm in the mood), my poetry (when I feel like posting it), surface marks of what's going on under the surface that are so minor that you could buff them out with a chamois and very little elbow grease, and my personal trials with trying to get to the bottom of what is wrong with me. Based on my own feelings, observations, and symptoms (along with a fairly conclusive MRI report), I'm pretty satisfied that what I'm dealing with is MS. More about that in a minute.

To conclude what I was saying, I am going to move my feelings about my daughter into another blog. I'll provide a link to my regular readers only briefly in order to protect my daughter's privacy, since we have the same last name. At some point, though, I'm fairly certain that the blog will become a book that may help other parents feel not-so-alone. I've heard lots of horror stories from other parents, which rival my own. I feel lucky when I hear their stories. I want to give them a place to talk to me outside my all-over-the-map blog here.

Now about the MS. I'm having my EMG tests on my legs next Tuesday. I considered canceling or rescheduling, but no. I'll go ahead with the tests. I know they are unpleasant, but I also want to complete what this neurologist feels I should do before going to an MS specialist. This neuro still thinks the lesions are from a migraine condition. I disagree, particularly because the recent pain treatment procedure (rhizotomy) that I went through all but proved that the head pain was coming from the facet nerves in my neck - not from a migraine condition.

Last night I had a very scary moment. Well - it seemed like hours. I had to drive myself over to the chiropractor's office, where I am getting therapy to help avoid having any procedures done on my lower back. Normally driving myself somewhere isn't a big deal. My husband and I bought a Saturn Aura last spring so that I wouldn't be stuck at home without a car all the time. He was going to buy a new Mini Cooper, but it was going to take 3 months or more to get the model he wanted, and he was getting ready to start traveling, taking the car with him. So he decided to continue to drive my Honda Accord and just get me something else. I love my car, but I have very few occasions when I really need it right now. Seems like a silly expense sometimes, unless I have a doctor's appointment or something (which does happen more than I'd like to admit). He wouldn't hear of me taking the bus.

So he was late getting home last night due to a late meeting and grueling traffic. He called and said, "You'd better just drive yourself on over there, and I'll meet you there." He had an appointment, too. I didn't know it was raining, and it was already pitch black out there. I wasn't too worried, but then again, I don't drive much.

It isn't so far to the doctor's office, but I do have to get on a stretch of I-70 where they are doing construction. That time of the evening, it was a free-for-all on the highway. I couldn't see the lines, I couldn't see who was in what lane. The raindrops all over the side and back windows were picking up all manner of light from the headlights around me and were reflecting it into prisms. I know I cut at least one person off. I know that I had a couple of near misses with the jersey wall. I couldn't remember what exit I was supposed to take, and then when I took that exit, I couldn't get into the correct lane. Then I nearly missed the turn.

By the time I got to the doctor's office, I was trembling. I felt like an old woman. My eyes haven't been so good for a couple of years now, and the optometrist can't seem to find anything wrong in the eye. He confirmed, though, that one eye can't be completely corrected anymore. It's just bad. And my eyes have become so dry and easily irritated that I have to wear my glasses most of the time. Contacts were easier, but not so much now.

We ended up leaving the Honda at the doctor's office overnight so that I could just ride home with hubby. I drove him over there this morning to pick it up. Such is my life now. I feel like I'm losing my independence little-by-little and I H.A.T.E. it. I was always Ms. Independent. Now I feel frightened.

Next stop, Lowe's. I am going to have to ask my husband to install a couple of handrails in the bathroom. My balance isn't so good, and I find myself having to be ultra-careful getting out of the shower, which is in our garden Jacuzzi tub, so I have a long step out. Not working for me. If he doesn't want to do that, for whatever reason, I'm going to have to start sitting on the side of the tub and easing myself around to get out. If I fall and no one is home, it could be bad. I already have had to slow down on the stairs. Can't go up and down without holding the rail, especially down. Really feeling like an old lady here. I'm 45, by the way. Not old. Just wobbly.

Things I Can No Longer Do:
- Wear high heels
- Run up/down stairs
- Walk on my toes, which isn't a huge deal, since I'm past my ballerina phase
- Take my footing for granted
- Get out of the shower without fear
- Drive at night (esp. in bad weather)

There are lots of things I can still do, though, but I'm feeling like maybe I should become a daredevil. I would surpass my own expectations, and if I die trying ... well, I wouldn't die trying.

I'm done whining.

Look for my note about the other blog in the next few days. My daughter's 24th birthday is tomorrow. When I delivered her, after a long, painful labor, I never dreamed she would be spending her 24th birthday in a big, fancy psych hospital. I hope she's getting the best care possible. She won't even admit to us that she's there, but we found out. Most people with her condition die by their own hand. If you pray, please pray for her. If you are into something else, please send good energy her way. I am not ready to lose my only daughter. I want her to get well or at least functional. She deserves to do that. She's brilliant and reminds me a lot of John Nash in that respect. A beautiful mind...

Peace - D

1 comment:

Heather said...

I don't have the words. But, I have the energy and the thoughts and the hope that I will certainly send your way and the way of your daughter.

Getting old sucks.