Monday, December 27, 2010

I'm feeling better, I started a new med, my mouth is still jacked up but I dont have sores in it right now. I'm still tired about 100% of the time, but thanks to the ear tubes, I can hear now so thats a major, major improvement.

Thanks and <3 to everyone who asked how Ive been. I love you guys :)

Wednesday, December 15, 2010

 I had the ear tubes put in today.

I was told it would be painless.

They lied.


My throat is so sore from the tube they put down it. its seriously a 20 on the 10 scale. I would cry more but that makes it hurt worse.

any suggestions on relief?

I cant believe I ever let them do this to Jonas when he was almost 1.

Saturday, December 11, 2010

http://www.orthop.washington.edu/uw/tabID__3376/print__full/ItemID__23/mid__0/Articles/Default.aspx

It fits so well I have almost all of these symptoms.

It just... fits.

I googled "behcet's mouth sores" and the pictures - yep. White film that looks like thrush? yep. Vag sores? yep.
Skin rash? yep. (its dry and itches and looks like ezcema)

fml

Wednesday, December 8, 2010

Where do I even freaking start.

Monday, I got a call to schedule surgery. (It was for ear tubes. If you're new enough you are lost, I will explain, just ask)

When I was talking to Jason and said "I have to be at the hospital at 6 am) Jonas LOST IT. He was certain I was going away, and I was going to die, and he just lost his mind.

For the next 2 days, he would not let me go. He wouldn't go to school. He wouldn't let me out of his sight.

Wednesday morning, the plan was for me to drive myself to the hospital, then Jason was taking Jonas to school and coming to pick me up. We'd go back to get my car that night.

Well, lol. Jonas wakes up, realized I'm not home, got upset. He kept saying I went to the hospital to die. Refused to go to school. He told Jason to take him to the hospital because he needed to check on me, and he needed to take care of me.

So, I have surgery. They said it wouldn't hurt and let me tell you internetz, they lied. I woke up with a sore throat from where my throat has been inflamed, and they messed it up shoving the tube down it. Then my ears felt like someone was stabbing them with a searing knife. They gave me some fentanyl and let me sleep for a bit, then we came home (Jonas saw me and screamed MOMMY YOURE NOT DEAD!) and I slept pretty much all day.

We got up at 7 to go get my car and half way there had to turn around because the roads were blocked due to ice. We ended up going to IHOP where I tried to drink coffee and failed.

We came home, and I got up the next morning to take Jonas to school, and Jason was supposed to get up and take me to get my car, except he wouldnt wake up so I took Jason's truck. Jonas only stayed at school because he found out they were having a party.

At 2 we went to get Jonas and then we went to the hospital to get my car - where Jonas promptly freaks out again. 

I mean, I get it. He's 4, he sees us at the hospital and sees me getting out of the truck, and he thinks I'm sick again. I get it, but I certainly didn't expect him to be so traumatized by the stay last month.

Jonas spent the next 2 days, AGAIN, stuck to me without letting me out of his sight, complete with nightmares waking up screaming about how I died.

a+ life. a+
So.

Dr today. He was very, very open about the idea of Behcet's




My current Dr was at some convention, and saw the Dr I saw 2 weeks ago ((the lady rheumatologist I met with 2 weeks ago who told me nothing was wrong with me) and he took the opportunity to tell her how he felt about the way she treated me.
Regardless, she admitted she needed to write to me about the way she acted, she was frustrated because she couldn't figure out what was going on. 
Anyway, point is, they got to talking.


Remember, Earlier this year when I had the endoscopy and colonoscopy.
Apparently they didn't check at the time or thought it was no big deal, because I didn't have the symptoms I have now, but there was evidence of Sarcoidosis. The ONLY reason it was even brought up is because when I was in the hospital, the GI Dr came to see me and he was the same one who did the biopsy. GI Doc apparently told the other Dr (the lady rheumatologist I met with 2 weeks ago who told me nothing was wrong with me) "Oooooh this makes sense now!" and explained it to her  and she told my current Rheumy.


What I don't understand is why she didn't tell ME - and furthemore why she insisted nothing was wrong with me when she knew this information.


So now, unless they have the biopsy tissue still (doubtful) I have to have that done again and a whole host of other tests that I've ALREADY HAD DONE.

The kicker? It's so rare in America that they never even thought to check it. Only I would catch a rare disease.

If it's not that, next on the list is Behcet's. Everything fits, and this is where he would have gone first without knowledge of the biopsy.

I've read up on both, and both fit. 

He does not think it's Reiters because that would have cleared up on it's own by now unless it's chronic.
I'm on prednisone daily indefinitely and I'm starting something new called Clochorine.
Anyway, there's the plan for now.


Edit:
Sarcoidosis is an autoimmune disease disease that causes clusters of cells to go bad and it affects multiple organs and causes them to become inflammed, and can be life threatening if the lungs are affected (Ive had a dry cough for 6+ months)

Beh├žet's disease is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies' own tissues.

Sunday, December 5, 2010

Being the detective I am, I found a disease called Behcet's. it fits, man. EVERYTHING FITS. I'm going to talk to the Dr about it on the 8th.

Thursday, December 2, 2010

I made homemade chicken wonton soup and ate it for 2 days. Now I'm out and it's all I can think about.

Now this is where I start thinking I'm nuts.

My mouth is not better, but its not worse. This is the first time in I don't know how long that it's not progressed to OMGCANTEAT in days.

Am I crazy for thinking that him poking a hole in my ea drum, and it draining is somehow related to my mouth? It makes no sense that I can find, but google isn't the know all if medical conditions, either.

IDK

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!"

LOLOL IF ONLY I COULD DOUCHEBAG

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.

Monday, October 4, 2010

Jason had strep

Then Jonas had it

Now I have it.

And a raging ear infection. My ear is so filled with fluid I can't even open my mouth.

A+, life. A+

Saturday, August 14, 2010

Saw the new rheumatologist - Dr Singh.


I'm taking 10 mgs prednisone 3x daily for one week, then 2x for a week then 1x daily after forever?

I'm on day 3. My Mouth, eyes, smell taste - etc are SO MUCH BETTER already.

My mouth pain is almost completely gone. My lips are still dry, but eating doesn't hurt. They also gave this stuff called Magic Mouthwash which is lidocane, benadryl and other shit, I swish and swallow. It helps a lot.

I smelled my coffee this morning. Only right when I was drinking it, but wow. It was great. 

My eyes are still draining, but instead of wiping gunk out of them 50-60 times a day its only 4. When they tear up its still green tinged but I don't have massive snot in them.

My ears are barely draining. I can hear everything now, I think. I certainly don't have puddles on my pillows and when I turn my head I don't have shit pouring out of them.

I'm really angry at my old Rheumatologist right now. How in the hell he thought everything I had going on was fibromyalgia is beyond me. 

Now only did he pretty much not listen to me, I ALLOWED IT because I was so happy that SOMEONE WAS PRETENDING TO LISTEN that it didn't matter that he wasn't really HEARING me.

When he surprise! closed his office, they referred us to a new Dr. Except the new Dr took a month to write me a letter saying "HERPDERP WE DON'T SEE FIBROMYALGIA PATIENTS" So, I had to find a new one which took until August because they are so backed up. I had no care or medication from April to Aug. It just pisses me off how freaking hard it is to get health-care in what is supposed to be the best nation evar.

Sunday, August 1, 2010

Effing Rheumatologist.


When he closed his office with no notice, it left me pretty much with no Dr. Because all of the other rheumatologist have 3-4 month waiting lists.


I developed this lovely white film in my mouth and what appear to be sores or ulcers. I thought it was thrush and wento to get some gentian violet.
Did nothing.
So, what I thought was thrush isn't I guess? Its all over my lips, too.
 I have white patches all over my mouth and my tongue is white with bumps. And omfg the pain. Luckily I have some oral lidocane left over from when this happened in December. I have an appt with my new rheumatologist Wednesday, so hopefully he can figure something out, though I'm not hopeful.