Wednesday, September 26, 2007

Look Ma, no autoimmune disorder...

The past couple of weeks have just flown by. OK, who am I kidding here?! This year, since late March, has whizzed by at the speed of light. Not only have I been kept occupied with graphics work, tire store work and just life in general while living in a house with two racers, one horse rider and our menagerie of animals but there have been a couple of medical developments as well.

I'll go first. As I've mentioned before, I have Meniere's Disease. I'm not going to go into the stats of a person having this except to say that it's not found on every street corner. I've been going to a fancy-shmancy ear clinic in a not-so-close really big city for the past several years but decided due to insurance changes to go to one closer in Big City, which is just a couple of hours away. The doc there was highly recommended by a friend (Thanks Asim!) who is highly knowledgeable about this condition. I was very impressed with the staff there and would recommend them to anyone who's looking for this type of doctor. This doc, Dr. House, (and just how cool is that to say you see Dr. House?!) did the typical hearing tests to check for changes. Apparently, while I'm not having many of the "fits" associated with this disorder, I have developed rapidly progressive hearing loss in my left ear. Now, my MD was diagnosed in my right ear. So, of the .2% populace that has this, I've entered the realm of the "bilateral" section, meaning it's now in both ears.

Blood tests were done to see if it might really be AIED. While noone I know really wants an autoimmune disorder, at least there are treatments, often with some reversal of the loss. I found out yesterday that I do not have AIED. Where does this leave me? This leaves me with no real treatment options to stop the loss of hearing. This leaves me, after a week of researching the treatment options and terms like "possible reversal" feeling pretty sorry for myself. And that sucks. I don't like feeling sorry for myself and expect that this nonsense will end shortly. I don't have time for this kind of energy drain.

However, I'm going to let this rant out. Then maybe I'll be done with it. Do you know how much it sucks to be 36 and be losing your hearing at the rate of an 80-year old construction worker?? Do you know how much I want to grab whomever came up with the "reduce stress and nicotine" theory to keep the fits from happening?! WTF? I am barely hanging onto my sanity as it is right now, and most likely my stress level will not decrease anytime in the near future and you want me to stop smoking. Yes, I'm planning on doing that again this year, but not right now. I feel it's safer for everyone involved if I don't attempt to put them down at this moment. I know that there are hearing aids to assist with hearing. I've tried them and they drove me CRAZY. Can you imagine having tones, rushing noises, ringing, etc with something stuck down your ear? It sucks. Yes, I know that they also have implants that will improve hearing should I lose it to that degree. And yes, should it come to that, I'll give it a go. But none of this information makes having this shit any easier for me right now. No, this is not new news that I have this disorder. But to have the hope that there could possibly be other options, other solutions, ripped away is tough for me to take today. It always sucks when hope is taken out of your reach.

Anywho. Mother's oncology office called and told her she needs a CT scan ASAP. It seems they got the tumor marker back. We don't know the official number yet, we'll find that out Friday, but we've found it's not a real good sign when they call to tell you they've moved up the scan schedule by more than a month. Her number has gone from 55,000 after surgery to 38,000 after a few rounds of chemo to 45,000 to 83,000 to 103,000. The trend doesn't bode well for finding out the newest number.

I'm tired of typing now. I'm sure you're tired of reading. I promise to try to make the next blog entry something a bit more lighthearted. I just didn't have that in me today.

Take care - Me


Lo said...

I know you are busy with seeing the dark side of life right now, but have I lost track of time? I realize that you are MONTHS older than I am, but aren't we still several weeks away from you being able to call yourself 36? You are usually so vague about the identifying details about yourself- wouldn't this be a good place to go with "mid 30s"?

Just for the record: if you think that I'll stop calling you to bitch and moan about my life just because you stop being able to hear - well, you couldn't get so lucky! I'll make sure that we both have webcams and chat software and whatever else we have to have so that you can STILL be the best listener I know!

Anonymous said...

I'm sorry to hear about the Menieres. There is a community of menieres sufferers here:

All of the friends on the friends list have menieres. It is interesting to go to their myspaces and see how they are coping, as many of us have had Menieres more than 10 years (13 years for me and I can still hear pretty well - so there is hope!). I was 32 when first diagnosed. There are also links to rehabilitation videos made by an ear doctor showing exercises that can be done to reduce dizziness, and lots of links to research sites.

Hope it helps!

cindy said...

Hang in there, girl! Love ya.