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
Showing posts with label Meniere's. Show all posts
Showing posts with label Meniere's. Show all posts
Wednesday, September 26, 2007
Monday, February 5, 2007
Hindsights...
Yesterday when I woke up, I felt great. I was looking forward to the day and had a great disposition upon waking up. That should have been my first clue that something was not quite right. You see, I am by no means a morning person. Even my children know this. They know to wait until after my 2nd cup of coffee before attempting to get me to comprehend something. So, anyway, the morning was great, we even decided to go to the backyard church.
Now, I'm not a big fan of the backyard church, or any church of that denomination really, but it's literally in our back yard. Convenience is a hard thing to break. Especially when the church I'd like to attend is about 15 miles away. So, we walk to church, the sun is shining, birds are singing... I was expecting a little cricket to jump in and break out in song. The message of the preacher was pretty good, and the kids were behaving... CLUE 2. (life's just too good at this point, I really should have paid attention to the signs more)
It's getting to the closing part, you know, where the congregation stands & sings and the preacher is standing up there just praying for someone, anyone to come down front and the people are already thinking of what they're going to eat for Sunday dinner when IT HIT.
Shooting pain from my ear up my head. Loud roaring and pain. What a way to finish up a spiritual moment. Though I must admit, my prayer level was kicked up a notch. Then of course, the dizziness started. Not too bad, just enough for Speedy to look at me and ask if I was OK. Um... nope, not OK, but I think I can make it home.
So, back through the yard to the house. Moosie kept me steady as I walked. I took the meds I have for just such an occasion & sat down. This "fit" (as I like to call them) was not too bad. I was nauseous this time, which is not normal for me, but the overall dizziness wasn't too bad. I was able to remain sitting so long as my feet touched the floor and I stared at one spot on the wall. You see, my mind knows that the walls and floors don't move and I can reason that I'm not actually moving, though it may seem like it. The noise in the ear, the pain and the apparent spinning do not make for a beautiful day, let me tell you. Luckily this all only lasted about 30 - 45 minutes. Not too bad. I've had it last for hours before.
Afterwards, well, I'm tired. Bone tired. Not really sleepy, though I did do quite a bit of that, but just worn out. And I will be for a few days. The good news is I only have one of these "fits" about once a year, so I figure I'm good to go for another 364 days. :)
The bad news is that I don't know when they will come, there is no cure, and most likely at some unknown point in the future it will get worse. I take daily meds for it and they've helped alot, but it's no cure. Even the specialists don't know much about this thing and can't tell too much other than what someone who has it already knows. Another sucky thing about this condition is that there are no outward signs. And there is not much information out there about this, so you just wind up telling people you don't feel good and they look at you like you're a weakling, a person that just doesn't want to "deal" with life. Well, screw you buddy.
Today, the day after, is the pissed off day. Yes, I normally have those after a fit. It's the day of saying WHY? Why in the world did I end up having this? Why am I one of the 615,000 in the U.S. to have this bestowed upon them?
Today is also the thankful day. I only have the reminder of this disease about once a year. Most days I go through life not even thinking of it. Some, in fact, many with it are not so blessed and have to go through severe procedures and take heavy prescriptions. So really, I just need to shut up about the why me and start saying thank you to the Beings that Be. Thank you.
So, the modal sheets didn't get cut into strips for knitting, I got to lay on the couch and hold my beautiful daughter, hear her tell me she loves me and have my son come in and rub my sholders, sit with me and give me hugs. I got to have my hubby tell me to not do anything but take care of me. Maybe the day was a great one after all. Much to be thankful for, and I am.
Now, I'm not a big fan of the backyard church, or any church of that denomination really, but it's literally in our back yard. Convenience is a hard thing to break. Especially when the church I'd like to attend is about 15 miles away. So, we walk to church, the sun is shining, birds are singing... I was expecting a little cricket to jump in and break out in song. The message of the preacher was pretty good, and the kids were behaving... CLUE 2. (life's just too good at this point, I really should have paid attention to the signs more)
It's getting to the closing part, you know, where the congregation stands & sings and the preacher is standing up there just praying for someone, anyone to come down front and the people are already thinking of what they're going to eat for Sunday dinner when IT HIT.
Shooting pain from my ear up my head. Loud roaring and pain. What a way to finish up a spiritual moment. Though I must admit, my prayer level was kicked up a notch. Then of course, the dizziness started. Not too bad, just enough for Speedy to look at me and ask if I was OK. Um... nope, not OK, but I think I can make it home.
So, back through the yard to the house. Moosie kept me steady as I walked. I took the meds I have for just such an occasion & sat down. This "fit" (as I like to call them) was not too bad. I was nauseous this time, which is not normal for me, but the overall dizziness wasn't too bad. I was able to remain sitting so long as my feet touched the floor and I stared at one spot on the wall. You see, my mind knows that the walls and floors don't move and I can reason that I'm not actually moving, though it may seem like it. The noise in the ear, the pain and the apparent spinning do not make for a beautiful day, let me tell you. Luckily this all only lasted about 30 - 45 minutes. Not too bad. I've had it last for hours before.
Afterwards, well, I'm tired. Bone tired. Not really sleepy, though I did do quite a bit of that, but just worn out. And I will be for a few days. The good news is I only have one of these "fits" about once a year, so I figure I'm good to go for another 364 days. :)
The bad news is that I don't know when they will come, there is no cure, and most likely at some unknown point in the future it will get worse. I take daily meds for it and they've helped alot, but it's no cure. Even the specialists don't know much about this thing and can't tell too much other than what someone who has it already knows. Another sucky thing about this condition is that there are no outward signs. And there is not much information out there about this, so you just wind up telling people you don't feel good and they look at you like you're a weakling, a person that just doesn't want to "deal" with life. Well, screw you buddy.
Today, the day after, is the pissed off day. Yes, I normally have those after a fit. It's the day of saying WHY? Why in the world did I end up having this? Why am I one of the 615,000 in the U.S. to have this bestowed upon them?
Today is also the thankful day. I only have the reminder of this disease about once a year. Most days I go through life not even thinking of it. Some, in fact, many with it are not so blessed and have to go through severe procedures and take heavy prescriptions. So really, I just need to shut up about the why me and start saying thank you to the Beings that Be. Thank you.
So, the modal sheets didn't get cut into strips for knitting, I got to lay on the couch and hold my beautiful daughter, hear her tell me she loves me and have my son come in and rub my sholders, sit with me and give me hugs. I got to have my hubby tell me to not do anything but take care of me. Maybe the day was a great one after all. Much to be thankful for, and I am.
Subscribe to:
Posts (Atom)
