Monday, July 11, 2011

Looking up :)

Today - things are much better!
My mouth pain is gone for some reason, my eyes are better, but my ears are still pretty full of fluid.

I bought a $25 gift certificate for $3 a week or so ago, so we went out tonight to use it. I was able to eat some fried mushrooms and then I had half of a chicken hoagie (with most of the bread pulled off). I am actually hungry again, which almost never happens. It's usually a chore to try and eat, but my calories have been really low for the past week. I'm supposed to be eating 2200, and I am lucky if I hit 1000.

That said, I'm going to take this pain free moment and cook some cabbage soup and try to enjoy it before something goes wrong :D

I have a rheumatologist appointment Wednesday - he's supposed to change my medication but I was doing a bit of research and found out that I'm on HALF the dosage most people are, and then you take into consideration that I'm missing half of my intestine and not absorbing all of that, the 100 mgs I am taking daily compared to 200 normal people take, likely isn't doing anything.

I'm going to ask why I'm only on half the dosage and double check he understands I don't have full absorption of medications.
I believe the next medication of choice was going to be CellCept, but I can't recall for sure.

Sometime this week, I am going to post something I found on Aetna's website showing all of the tests and procedures I've had done since this started. It's mind-boggling, that's for sure!

Saturday, July 9, 2011

So, my mouth is pretty terrible right now.


I dared to venture out and eat something NOT soup and I'm paying for it dearly. My hands are swollen, my mouth is peeling, and my eyes are draining pretty badly.


Guess it's back to won tons for the next week so I can recover.


Ive pretty much only been drinking lattes for 2 days because I could use the milk calories, and because its just SOO soothing.


I've lost more weight, too - 5 more lbs making it 260 total, and 165 since I got sick.

Sunday, June 26, 2011

I just realized I didn't eat today. I was around food plenty - I cooked 3 meals for Jonas, a snack and dinner for Jason.

It's hard to explain - I just dont care about food anymore.

I could have easily gone to bed without eating (Im about to go eat some won tons) and slept happily. Its like a chore that I would just rather forget.

I don't think I'm anorexic - I don't fret over my weight or think "OH MY GOD I CANT EAT" - I just don't care and don't think about it.

Most days I DO eat. And make no mistake - never a day goes by without milk and multiple lattes (Starbucks, or home) so I am getting some calories even if they're crap. Can someone live on milk? Not sure. Pretty sure I do. At least it keeps my sugar from going too low.

How in the hell did I go from 400 lbs to food just being something else I have to find time for in my day?

Some days I do crave food - what I wouldn't give to make and enjoy my stroganoff right now. It's just not worth the effort to cook it and then not even be able to taste it. Coffee is the only thing I can really taste. I eat the won tons because they're soft and full of carbs and protein.

I didn't mean for this to be a bitchfest - its just weird how much things changed

Saturday, June 18, 2011

 I don't say this often enough, but my husband is an amazing, amazing person.

I see so many other people go through hard times financially, health wise, depression wise and their marriages fall apart.

Not one time, ever, has Jason made my life even a little harder because I'm sick. Not once has he complained about  picking up the slack. Not once has he complained about any of this. He goes out of his way to make my life easier most of the time. There were weeks he was working 60 hours a week and then coming home to do chores because I hurt too badly to get out of bed.

When I was at my worst, (and could barely get out of bed for 3-4 months) he would wake up before work, make Jonas breakfast and pack a lunch cooler with food for us so I wouldn't have to go downstairs until he got home - as if I could have made it anyway.

I do complain because sometimes he does things that normal people do, but it's never been because I'm sick/depressed/stressed out. 

I married a good man. 

Tuesday, April 19, 2011

zomg I ate cabbage soup and didn't get siiiiiccckk

I don't know how or why, but I accidentally used condensed tomato soup instead of tomato sauce and I suppose that's why. I also put sour cream in it right before I eat it so I assume that cuts the acidity, too. Not one single blister in my mouth this morning, yay

When our washer broke last year, I never got caught up on laundry.

I took it all to the laundromat today 25 loads, y'all. Yes... 25. 4 5-loaders and 1 4-loader. I am still folding.

Of all the seeds I planted, I think I killed all but my carrots, sadface.

Jonas is doing much better this week, he hasn't asked me if I am going to the Dr anymore.
I am seriously considering taking the pain involved in eating the cabbage soup I just made. This is torture, knowing my favorite soup ever is down there, calling my name.

Maybe if I water it down a lot, the tomatoes won't bother me. I've read that adding a little sugar can make it less acidic so I shall try that. yuummm

Wednesday, April 13, 2011

Saw the rhuemy - changed meds. On prednisone still - off the others and onto immuran (a chemo drug).

Monday, April 4, 2011

Yesterday started out well enough.

I woke up at 10, and Jonas has already eaten an apple, banana and wanted me to cut an orange.  I did that, and ate part of it with him along with some of his leftover apple. (this is important later)

I made Jason steak and eggs and homefries (steak and potatoes were left overs) and then Jonas and I decided to go to the Olympic Park to play in the fountain. We got ready and headed there, only to find out parking in downtown Atlanta was $20 because of Wrestlemania. (Philips Arena is next door)

After an hour of traffic and looking, I FINALLY find $5 parking, and we head to the fountain. Only the fountain is closed for maintenance. 

I ended up buying Jonas some Italian Ice and we sat in the park and took pictures then he found 2 guys to play Frisbee with, and then we headed to the playground.

I got home and Jason and I went outside to cook dinner which he'd already started, since it was ribs and they need about 3 hours. I made egg boodles with asparagus and poached eggs and I KNOW I have trouble with tomatoes so I skipped the ribs.

Jonas didn't finish his rib, so I took 3 bites. THREE! That's it. I also had some of his apple juice.
Within an hour my mouth was full of sores, on fire, my lips were swollen, my eyes were running and to show me they're in charge, ozzing discharge. My mouth hurt so badly, I was barely able to talk. 
Around 8 PM, I got an email from the Behcet's support group and they were talking about a list of food that was pretty newly released, that should be avoided.
On the list?
Every thing I put in my mouth yesterday.
Tomatoes
Apples
Oranges
Basically anything with any acidity. Nuts are included, but I don't really eat those.
Its better today but I was doomed from the minute I woke up.

Tuesday, March 8, 2011

Warning for language

First - Friday I got a voicemail from the Dr's office. Here it is. The voice mail basically says "Hey, I'm calling about your appointment on the 8th! The OTHER Dr you originally called about has some openings before June, so if you'd like to reschedule to see him, call us!"
Well, I was fine seeing my old Dr and I was out of meds, so I didn't call to reschedule.

----
I didn't sleep good at all because I was so anxious. I got up and left the house at 7:30 and then sat in traffic for almost 2 hours. 

I had lost my insurance card but my regular Dr's office was going to fax a copy over, so around 9:15 I called the new Dr's office to make sure they have it.

Except the chick tells me my appt is the 22nd.
Keep in mind I dont do confrontation because I get really freaking upset when I think someone is rude.

Me: uh no, its today and I have the voicemail to prove it
Her: No, it's the 22nd

Me: NO! It's really not.
Her: Well, that's what we have. Our receptionist left you a voice mail rescheduling!

Me: I've had to keep my son out of school today, my husband has to miss work if I'm not home in time, and I've been in my car for 2 hours. You need to fix whatever you've screwed up, because I can't do this again on the 22nd. I'm out of meds and I need to be seen.
Her: Well, I can't help you. Your appointment is the 22nd. Dr Flinkenstein isn't even here, he had to push his start date back to May.

Me: Well, surprise! I'm at your door so someone is going to find an answer for me because this is freaking ridiculous. The voice mail says NOTHING about rescheduling and when I come in you can hear it yourself. /hangsup

I go in and tell them I want to speak to the office manager. He comes out and I ask him if we can step outside, and I tell him there is ZERO CHANCE he wants the other patients to witness this.

I get outside and I basically lost my shit. I was crying, I was angry and I apologized to him, too. I told him I knew it wasn't his fault but I went through a lot of bullshit to get here, and he can listen to the voice mail himself - but this was NOT MY FAULT and I was sick and tired of being dicked around for the past 18 months and I was DONE. And on top of that I'm being told this is somehow MY FAULT by the scheduler and NOTHING can be done to help me? No f---ing way.

He said he understood, and I would be seen. He said he would also find out what happened etc etc

So, since I had to be worked in I basically say in the office for 3 hours waiting to be called back.
I finally see the Dr, and without me even mentioning it, because I wanted to see what his first impression was - he said "Ma'am, you have a disease called Behcet's" 
"Yep, I pretty much already self-diagnosed myself with it since no one else could figure out what's going on"
Anyway, we talked about it for a bit and we're starting me on a cocktail of mylan, cholcrys (double last time's dosage) and double the prednisone and a steroid eye drop. (which is all $300 with co-pays but that's another rant)

I drove home and brought lunch and spent about 10 minutes with Jonas and Jason and went to go pick up my prescriptions - which the Dr had called in. 
I get to the pharmacy and they don't have them. So, I sit around and wait and they keep telling it will be just a few more minutes so I say screw it and read. 2 hours later they have all but one ready, so I get them and go.

I get in my car and need to go to Target and I just broke down.

I am so grateful to know what's wrong

But I had hoped I was wrong.

I was hoping he would tell me it was something that could be fixed or would go away. Behcet's has a high risk of Coronary/pulmonary arterial aneurysm and the mortality rate if that happens is exceptionally high.
Blindness is a huge risk, too. Thrombosis is a huge risk.
There will almost certainly be neurological involvement within 10 years.
I'm not a walking time bomb by any means but it doesn't help me NOT feel like one. I just wanted it to be something - not severe. 

I am so f---ing mad it took this long to find out because some of the damage is likely irreversible. I am just angry as hell in general.

I spent the next 2 hours in my car basically sobbing like a baby. I feel better now but I just have this sense of impending doom or something. Idek. I just feel broken and devastated and done.

Monday, March 7, 2011

Thou hast been warned - I am feeling super posty today

So remember when I made a post about how rheumatologist number #734 was one I liked and then stopped taking my insurance?

Well, I found a new one. An hour and a half away.

They didn't have appointments for 4 months but! They had a BRAND NEW DOCTOR IN THE PRACTICE who could see me March 8th!
I'm like ok - whatever. I don't have a choice.

The new Dr? is the same one I liked who closed shop in the middle of the night and mailed me a "Oh hai, we're closed. Good luck!" letter.

Saturday, March 5, 2011

So I've got a real problem. Not a REAL problem but a real problem to me.

I pretty much exist on these.

I eat them 2 if not 3 times a day. (I boil them in chicken broth and then save the chicken broth for a day or 2 and re-use it)

My store stopped carrying them. They have the sticker there but they've not had them in weeks.

I just ate m y last box.

/cry cry cry


Monday, February 28, 2011

I just realized I haven't taken a tramadol (Pain pill) since October.

This is so major - one year ago I was basically bedridden and could not even walk down the stairs or get up from my chair without help. I was using crutches, and Jason was having to bring up a days worth of food for Jonas before he went to work so I could feed him while he was gone.

I still am not 100% but the prednisone definitely a step in the right direction.

Saturday, February 19, 2011

I ran out of medication for a few days and JESUS CHRIST MY MOUTH HURTS. First time since November. I did not refill the chlocrys, because they reformulated it and and instead of $5 it's 100. NO THANKS. I decided to not fill it and see if just the prednisone helps, and after just one day, its already getting better so I guess the Cholcrys wasn't working.

meh

Sunday, January 30, 2011

Most of you know but some don't-

When I got sick almost a year and half ago, one of the first things I lost was taste. Everything is a drastically toned down version. Most things have almost no taste at all.

The exceptions are sweets. I can not eat anything with sugar in it. It burns my mouth to the point of tears. Chocolate is the worst - idk but I can live without it. Obviously. Soda burns my mouth, too which is fine because I never liked it.

The one thing I miss terribly? 

Fruit. OMG I miss fruit. I was some pineapple so badly right now I ache. 

Ironically, sugar in my coffee or latte doesn't bother me. Go figure.

A lot of things hurt my mouth, too. Bread that's too toasted, filet's of meat. I've gone almost completely vegetarian. The few exceptions are seafood and meat thats teeeeny like in chicken potstickers, or wontons. I eat alot of those two, though. Probably a bowl of each a day. 

I'm still only managing about 800 calories a day which is another reason I'm still only going 2-3 miles a day on the bike. I simply can't afford to burn the calories. I wish I could get the exercise this disease needs without burning calories. 

Thats another reason I drink so many freaking lattes - in my warped mind it makes up for the calories I'm losing. ha.

Monday, January 24, 2011

FMFL.
The last rheumatologist that I liked closed up practically in the middle of the night, remember?
I love the one I am seeing now. 15 assholes later I was desperate when i found him.
Just got a letter in the mail. No longer on my insurance.

Effective immediately.

Its going to take months to get into a new one.
F- It all

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.