Monday, February 9, 2009

Snow weenies

Has it really been since November? I have been trying hard not to whine constantly about my weird medical issues so I figured it was one of those times that if I had nothing good to say, I should just say nothing. However, I feel a whine coming on.

First, to explain the title here - we have had SNOW this year. In addition to probably double our usual horrid snowfall, we have had unusually cold temperatures. Combined, that means snow that hangs around. I don't think we have seen our grass since around Thanksgiving. I am sure it's still under there, some where, just counting the days until our January thaw. Oh wait, this is February. Well, we are sort of melting now. Somewhat. It doesn't mean winter is over or we won't get much more snow, it just means a temporary reprieve with melt.
That picture is my front yard taken a week or so ago. My poor beagles, one blind, have had a horrible time finding a good place to pee. Today we were actually able to get to the backyard. They were very happy to be smelling the prints left by the local herd of deer that runs through our backyard on a regular basis. I was happy to have them pee in the back for once. Even so, the snow was frozen - in some areas even I was able to walk on top of the snow.
Now for my medical whining. After about a zillion doctor visits and enough co-pays to sink my financial ship, I think I know some of what is going on. I lost weight possibly due to silent gastritis. You don't even want to know some of the tests involved to get that diagnosis, but let's say biopsies were involved, so I was rudely invaded. The pseudomonas aeruginosa on my skin is probably always going to be with me. I was finally told, "You are very, very white with very extremely sensitive skin." OK, I can live with it.
The "thrush" turned out not to be thrush. How many doctors did it take to come to this determination? It was only tested once, and the test was negative. Even so, I was treated for thrush by at least 4 doctors. I finally realized that if I saw a doctor in the morning, I was told my mouth was normal. If I went later in the day, I mostly got a confused doctor, treated for thrush, or once told, "I have no idea what this is. Can I take pictures of it? I have never seen anything like this!" Eventually I saw an oral surgeon who told me it's an auto-immune disease and I should just get used to it. Sure, I am now used to the fact that the inside of my mouth is swollen and looks somewhat normal in the morning, then sort of deflates between 1-2 pm daily, leaving the inside of my mouth to pretty much slowly peel off. Usually it doesn't hurt, but it is very, very dry. It could go away for years at a time, but would probably return.
Which auto-immune disease? Oh, one of three. No biopsy needed, he said, because it's not terminal and it doesn't matter which one it is. We can't treat it.
OK. I can live with this, too.
Meanwhile, I was still not hungry, but not really losing more weight. I have been given a new medication for that, but so far we aren't getting along very well. I have cut the dosage in thirds, but probably won't be able to continue with it. I think it's like trying to put out a candle with a fire hose anyway. There was talk of h pylori, but the biopsy must not have shown that. Darn. That is fixable.
Since last summer I have been noticing my vision in my right eye is deteriorating, so I figured I was going to have to give in and get glasses. I had Lasik done 10 years ago, and haven't needed glasses except maybe some readers if I am tired. I can read without them, but I don't ever want to strain my eyes. I went to my ophthalmologist. I do not need glasses. I need cataract surgery.
My reaction? I said NO and left. Within a few days I was laughing at myself. Was I expecting this to heal? I don't think so. When I finally decided to return to get measured for the surgery, my doctor was called out of town that very same morning for an emergency and would not return for almost 2 weeks. She should have been back today. I will get at least the right eye done soon. The left can maybe wait a while, but it also needs to be done. I knew I had a small cataract years ago, but did not even consider that was my problem now. Both eyes? Surprise!
My postponed trip to see ST did happen in January. It was very nice to see him and have a whole weekend together. He did still manage to find some time to use his computer for work, but it wasn't an issue. We have never had that much time together before, and it was great. I learned not to use bubble bath in a jacuzzi.
We are going to meet up again this coming weekend in DC. Last time was just before the inauguration, so we went to a different city in Virginia to avoid the crowds. I had hoped to get my right eye fixed before the trip, but it wasn't to be.
So you snow weenies can stop complaning about a few inches of snow. I admit, I haven't been able to keep up on journals for a long time, but I can just guess that many of you have been upset over a few inches of white stuff on your lawns.
Sorry to be absent so long. Time just flew by! I don't feel poorly so much any more. Just tired. Very, very tired. I can't take my Xyrem for sleep now, but that is a whole separate story. I have vague hopes of being able to use it again, because it's the only thing I have ever taken for sleep that has allowed me to really get deep sleep. I have had to depend again on my old sleeping pills. They at least allow me light sleep.
Let's get ready for my PreTravel Freak Mode Dance that will be starting any moment now. You know I haven't done anything to get ready for this trip yet, and I leave in 4 days.
I have missed all of you and I thank every one of you who took the time to inquire about my health and WTF I have been!


Melanie said...

welcome back!!!


Paula said...

I was just thinking about you today and I get online and here you are. Good to hear from you and know you are semi okay.

Myra said...

Glad you're ok...or at least finding out what the heck is going on! Have a fun trip!

Anne said...

Welcome back my dear. I have missed you. Just now getting back to journaling myself. I sure hope your health improves. Now, go do the "happy dance" and have a great weekend. Just so you know it's been raining here in AZ since Sat. and I've had to turn the gas logs on. We've had inches...only it's rain. Anne Cassie) said...

I am glad you are ok. I worried about you. Sorry you have had to deal with so many quacks. Don't give up there is some good Doctors out there.
Hope you guys get a break from all that snow.
My crocus are budding and coming up here.

IndigoSunMoon said...

Dont stop blogging just because you aren't feeling well Suzy girl. We love you, sick or well...and don't you forget it!
Cataract surgery isn't that bad. My Mom had it done and she was just fine in a couple of days. I hate that you are going to have to live with some of the other things, but we all have our crosses to bear, ya know?
I've missed you!!

Remo said...

Just make sure you put a condom on that snow weenie.

You don't want any snow-transmitted diseases.

I'm mostly known as 'MA' said...

I am so glad to finally see an entry from you. After your last post I was quite concerned. You deserve to whine for sure. What alot of misery you've been through. It makes me really afraid to ever see a doctor. I just seem to be muddling along and getting so tire of winter. Your snow looks alot like ours. We are melting down big time here. I have seen several patches of grass showing through now. Winter will return, but at least some is gone to make room for the next piles of snow to come. Enjoy your travels and write again soon! 'On Ya'-ma

Lazarai said...

Awww, Suzy, I'm so sorry you're still having so many mysterious medical ailments!! I hope you get your eye worked on of my friends just had both eyes cataracts removed and new lenses implanted (one eye at a time, I believe).

I know you're used to the snow. Seeing pictures like that one, though, reminds me why I moved to Florida 26 years ago. Do me a favor and whip it out again in August when I'm melting and wondering what the heck I was thinking....ROFL.

Ever since AOL journals stopped, and I get no alerts except on private journals, I haven't been keeping up. :( I just pop in when I can, when I think about it, just not as often as I used to.

Have a GREAT time with ST, Suzy, and stay in touch!


Rose said...

Seriously I have missed you. I did not get to go to Florida, because my husband's job, which he lost than got it back again. life is weird...

But if he keeps the job and does not go back to construction he will have a 401 K plan and holidays, so then we can go to Florida and get paid! wow, what a concept!

Seriously, feel better!!!

Coy said...

Then there is always South Florida ... 78 degrees not a cloud in the sky.
Seriously ... it sounds like you've been dealing with a lot these days but it's great to read an update. feel better Suzie
*** Coy ***