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

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)


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+

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.

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.