Thursday, November 25, 2010

So I did some more research into the hearing thing:

Today's Hearing Classification Hearing Threshold

Normal hearing-10 to 15 dB
Slight hearing loss16 to 25 dB
Mild hearing loss26 to 40 dB
Moderate hearing loss41 to 55 dB
Moderately severe loss56 to 70 dB
Severe hearing loss71 to 90 dB
Profound hearing loss91 to 120 dB
Deafbelow 120 dB

One ear was 60 and the other 90. I wasn't joking when I told you I couldn't hear you, lol.

Wednesday, November 24, 2010

Just some notes so I can keep track for my next Dr appointment. (The 8th)

Tongue hurts but its not terrible. Its got the white film again, but everything doesn't taste HORRIBLE anymore. I still can't taste fully, I would say Ive lost 90% of my taste since I got sick. I'm okay with this as long as that oily taste is gone.

My eyes started leaking green shit again about 2 days ago. They're a little red but I'm not getting "OMG  PINKEYE" stares yet.

Other than that I have felt okay for about 4 days. No joint pain, no lightheadedness. Just general fatigue.  Putting clothes up yesterday wiped me out and I needed a nap.

Ive been reading up on other treatments for what I think it is, which is oral lichen planus. 
The most promising is a plant called Purslane. I need to find out if eating it is ok or if I need some kind of extract.
The other promising thing is an anti-rejection drug for transplant patients called tacrolimus.
 Went to ENT.

He has no clue what's wrong with my mouth.
My hearing test showed severe hearing loss (threshold was 90 dbs in right, 60 in left)
he was going to put tubes in but the drum is so inflammed the tube wouldn't stay in with the mild pushing he was doing - he tried harder but it was too painful I will have them put in under general in 2 weeks
I can hear out of the one ear he did try since he put a hole in it, and it drained.
Sucky thing is it will heal in a few days and I'm screwed again.
My mouth is sore again but I have a rheumy appy on the 8th so maybe it won't get too bad before then.

Sunday, November 21, 2010

This was really annoying but I swear I heard about 10 times today

"Wow you look great!"
"God keesha! Youre disappearing!"

I mean Im happy Ive lost weight. Don't get me wrong.

But I wanted to scream at them "IM SICK, ASSHOLE. IM NOT ON A DIET"

But instead I just smile and nod.

My favorite quote?
"Give me whatever you've got, I could lose 150 lbs, too!"


Monday, November 15, 2010

 I had an appointment with the new rheumatologist and lets' just say my $20 and 3 hours would have been better spent scraping paint off the park bench.

She told me she didn't know why I had come to see her.
Um, because you saw me in the hospital, and my discharge papers said I HAVE to see you for a follow-up within the week?

She told me she was upset I got into her office as a new patient, when others have to wait MONTHS.
Uh, again. My discharge papers told me to see you.

She told me she could not see any sores in my mouth. I took a q-tip and showed them to her. She told me they were bite marks LOL

She then told me there was absolutely nothing wrong with me. She told me I was wasting her time. She told me I needed to stop taking any medication I was on because I shouldn't be on it.

I suppose I spent a week in the hospital for nothing.
I suppose my sed rates and blood work are screwed up for no reason.
I suppose this white film in my mouth and sores are nothing.
I suppose the barium swallow test in which I almost choked to death on an eraser sized pill because it got stuck in my throat due to inflammation was fake.
I suppose my kidneys are screwed up for no reason.
I suppose my eyes, ears and lady parts are inflamed, and draining for no reason.

Let's not forget the months I couldn't get out of bed due to joint pain!

Let's forget that when I am on steroids, I am marginally better - which almost IMMEDIATELY indicates some sort of autoimmune disease.

eff you dude. Just... ugh.

I don't know whats worst honestly.

Not being able to eat because I'm in so much pain, or not wanting to eat because everything taste like oil and dirt.

I tried to eat a egg and it was gritty and horrible. I tried to eat blueberry loaf. Dirt. Toast? Dirt. It all just tastes terrible.

i think it's the solu-medrol from the hospital:

Solu-Medrol (methylprednisolone) side effects

feeling short of breath;
severe depression, unusual thoughts or behavior
sleep problems (insomnia), mood changes;
bad taste in mouth, dry skin, thinning skin, bruising or discoloration;
increased sweating;
headache, dizziness, spinning sensation;
nausea, stomach pain, bloating; or

Im depressed. I'm sick of being sick. So many of you knew me before I got sick. its been so long. SO LONG. 

I cant do this anymore. I am done being sick. I can't do it. I just don't have it in me. Some days I wake up angry that I even woke up.

I'm going to snuggle my boy and sleep and hope I feel better tomorrow.

Saturday, November 13, 2010

13 months.

Thats how long I've been sick.

I've not had one single day in 13 months where I've felt ok. 

I had to go tot he Dr yesterday. Whatever this in my mouth is - Thrush, Oral Lichen Planus - whatever - I can't swallow. My throat is swollen. My eyes run green shit out of them all the time. I can't talk because my mouth hurts SO BAD. My lips have blisters. MY ears - I have so much fluid build up that all I can hear all day is SWISH SWISH SWISH when my heart beats. At least I can hear that because I can't hear anything else. Jason has to repeat himself 10 times, I dont even ask strangers to repeat themselves anymore. I just nod and smile and hope for the best.

I can turn the TV to 100 and I can't hear it. I have to use CC.

So effing over this.

I'm on Gentrex for my eyes, Septra, Diflucan and something else I forget.

The Septra is liquid and has the added bonus of raising my pulse and blood pressure for about an hour after taking it. its super fun, I tell you.

On the plus side, I DID get an appointment with infectious disease for the 11th.

Sorry. Emo post is emo.

Tuesday, November 9, 2010

Can't edit from phone
I went to the Dr again because the antibiotics made my mouth worse. I can't drink or eat and lost 10 lbs since Friday and haven't peed since Sunday then while I was there the labs from Friday came back and its staph in my eyes. Again.
So they had me admitted.

I tried to contact my rheumy, but he's out of town for a convention. Now I have to see the same one who wouldn't see me because I had fibromyalgia  (which wasn't true) because she is the only Rhuematologist still in Atlanta not at that convention, apparently.