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+

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.

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.

I am so.freaking.sick. of trying to eat more. Eating makes me hurt. it makes my mouth hurt. it makes my stomach hurt. It makes my gums hurt. I feel like I ate all day today.
I am in tears over this. I will never meet 1200 calories. I'm just so sick of it. maybe I will have a yogurt in a bit and IDK what else. 


Have I mentioned my hair is falling out? It is.  Assuredly because I can't eat anything.

My throat is swollen and I can barely swallow. I woke up feeling pretty bad today and headed out anyway because I had some stuff I needed to do.  Jonas and I went to Wendy's and got Jason some lunch because I didnt want to pack this morning. Jonas, as always, got a chocolate milk. We get to Jasons work, and Jonas spills it EVERY.WHERE. I made him strip naked and ride that way. I stopped at a thrift store, made him wear my hoodie and got him more clothes. I also scored a ton of vintage crochet thread for $5.  I also got 2 books, The Perfect Storm and Storm of the Century for .50 each. We then went to Walgreens to get my NEW antibiotics since the others didnt work. Again.  Then we headed to Mcdonalds to steal use of their playroom without buying anything.  buy a bottle of water. Before we went in I took this enormous antibiotic called Septra. HUGE. I have to eat with it, so it says, so I decide to buy myself a chicken breast plain. I order and before I can even sit down, I'm feeling like I gotta puke. And boy.. did I ever. I have never puked so violently in my life. Not even when I started taking Cymbalta. So, luckily I was wearing baggy sport capris so it didnt get on my clothing much and I cleaned up, and went to wash my face to find out I had busted blood vessels in both eyes and petechia all over my face, including several large ones around my eyes. I look like a freak. Jonas played for a bit, and we headed to kroger where I found Skyline Chili in a can. it seriously took all of the restraint I posses to not buy it all and hoard it. I only didnt because I wasn't sure how it would taste. I have a homemade recipe but it takes 5 hours (Not counting overnight) to make it. Of course, I couldn't taste it to tell how close it was to mine, which I think is the most perfect food ever. But, Jason says its close enough, but mine is thicker. I can add cornstarch so I'm just psyched I dont have to invest half a day next time I want to make some.   I ate as much as I could, cut the septra in half and took it AFTER food and I still want to vomit, but I havent so ok. I'm going to crochet some bookmarks and try to sleep. Bleh.

I've spent 4 weeks trying to get into the new rhuematologist's office. They have a million hoops to jump through and I did, then I get a letter in the mail today that they won't see me because I was diagnosed with fibromyalgia. IT WAS THE WRONG DIAGNOSIS DICKHEADS. They don't care, they still won't see me. 

I couldn't sleep sunday night, so Monday morning I went to the Dr because my eyes were runny, blurry and pouring green stuff. My ears, too. She said the same thing, it looks like Rheumatoid Arthritis, but was going to put me on cipro anyway just incase. Of course, I'm not any better. This has been going on since October and I'm so effing sick of being sick. I'd been feeling better lately but today my legs and body hurt so bad and I just KNOW I'm about to flare up again. My wrist and ankles are swollen. Fun times. 

So last month I stopped taking Lyrica and Celebrex. I noticed NO change in pain.

I lost my bottle of cymbalta 4 days ago and I am having severe withdrawals. Sick to my stomach, pain, I am in such a foul mood that *I don't even want to be around myself right now. I was having suicidal thoughts but thankfully I knew that was a withdrawal symptom so I told Jason immediately

I finally found them so I hope I will feel better soon..

I decided to just stop the Celebrex, but I ran out of Cymbalta 4 days ago and my Dr's office is closing* so it took forever to get a refill. I am going through insane withdrawals, too. I am depressed and bitch and cloudy and I hate it.

*No notice at all. This is the only Rheumatologist who helped me at all and i just got a letter last week saying he was closing, (in 2 weeks!!) and good luck.

The bad thing about medrol? I have an appetite. I'm eating grilled cheese like craaaazy

The good thing? Now that I'm eating more than 500 calories a day, I dropped 5 more lbs! lol

Thats 55 lbs down, a LOT more to go. I'll be happy enough with another 50ish but I should really lose about 85 more.

I am SO EFFING SICK of being in pain all of the time.

I hate to admit this but sometimes I find myself thinking it would be so awesome if I just didnt wake up.


These medications and Dr's etc are killing us financially. We've gone from a nice savings to nothing in just 6 months because of this mystery illness. I just realized I never posted: The GI doc called yesterday. I do not have Chrohns but I have pretty nasty inflammation in my bowels. My rheumy is scheduling a nuclear scan next month.
http://www.ucsfhealth.org/adult/adam/data/003834.html
That should find out exactly what is going on, so thats good I guess.

The bad part is the test costs about $6000 and insurance may not pay it. But make no mistake; if they dont pay it, I WILL find a way to pay it.



Lyrica is $250 a month out of pocket
Cymbalta is $40 oop
Celebrex is $40 oop
The blood work is usually %50 a month after insurance
Plus the $20 co pay every month

At this point I think we're going to have to refinance the house to finish paying off my gall bladder surgery and maternity. (for those who werent around for THAT fun, since I supposedly couldnt have children, my uncle didnt have maternity coverage and I had to pay out of pocket for Jonas birth and then they wouldnt pay for my gallbladder since they claimed it was caused by pregnancy)

I called and begged the rheumatologist to take me as a walk-in today., He is starting me on Lyrica (and keeping me on Cymbalta) AND... He gave me a shot of 80mg MEDROL OH MY GOD I was literally about to pee my pants with delight while I waited for the nurse to shove my needle in my ass. I felt like I was sitting at a crack house waiting for my fix. It isnt even working yet and I'm already feeling better knowing that I will wake up tomorrow feeling so much better. He was hesitant but i told him that I had a really big weekend planned (I'm taking Jonas to the ren faire Saturday) and  he agreed to give me the shot. In other news, I'm down 50 lbs as of today. I had to go buy some new clothes because my pants kept falling off. I got 1 pair of pants  and 2 shirts, and a pair of sneakers.  That's all for now, I guess.

The colonoscopy/endoscopy was a nightmare.

They gave me propafol and it made me siiiiick

I DO NOT have Crohns disease.

I do however have a hietal hermia.. annnd

My stoma is wide open. This is a crucial part of my gastric bypass surgery - it is supposed to be small to keep me full.
He said my pouch was very small, maybe 2 oz's. 

That explains why I gained weight. 

Beautiful. Except not.

Pain is back

The last 2 weeks I've been rolling about a 3-4 on the pain scale. I woke up this morning, easily 15 out of 10. I just laid in bed sobbing for about 2 hours until Jonas woke up. I fixed him some Chef Boyardee (Don't judge me. I could barely stand) and I had some coffee. 

I just don't get it. Yesterday Jonas and I were running in the yard playing, planting, painting. Today? I'm pretty sure I wished for death this morning.

I took 2 pain pills, and thankfully my wonderful son is having a blast playing on starfall.com I'm so lucky to have him. it's like he KNOWS when I don't feel good, and e takes a day off.

I slept for 3 hours last night, and then took a 4 hour nap. So.. Ive had seven hours since Wednesday night. I've emptied the tivo out so I tivo'd a bunch of cooking shows., If I can't eat, I might as well sit in bed , unable to sleep and cry about the good old days where food had a taste,

I made cornish game hens stuffed with onions and garlic, and roasted potatoes, deviled eggs, and stuffing. Jonas and Jason seemed to enjoy it. I ate... oh wait. A cup of tea. I'm trying to remember WHAT I had today but I think it was nothing but a latte. Oh I had half of Jonas' sausage mcgriddle. Maybe I'll try and eat an egg and pray my stomach doesn't try to kill me.

I went to a thrift store and bought a bunch of books since they were half off. I got a few Stephen King books, some Nicholas parks, and Harry Potter, and 2 sweaters for $9. yay.

Since October, I haven't been able to taste anything correctly.
Everything just taste... bad
I had a bite of a snickers today and it actually BURNED my mouth. I had to rinse it out to make it stop.

wth?

Also, saw the Eye Dr and Lady Dr. No infections. Neither knows what's wrong.

My diet stalled, so I had an off day yesterday, which was still not much to eat. I had some ramen noodles, grits and a chicken sandwich. I woke up this morning in so much pain I couldnt even go pee. I just laid in bed and cried until i went back to sleep. Someone pissed me off the other day and told me I was anorexic. I don't think thats true. I'm not obsessing with food. I'm just NOT HUNGRY. I am forcing myself to eat. It pissed me off pretty bad, but I don't think a loss of appetite = anorexia. I could be wrong, but blah. I'm going to drop carbs for awhile and see if that helps my pain. If low carbs doesn't help I'm going to try and drop all gluten. I hate this.

My leg is hurting again. This is bullshit.

I'm sitting in the grocery store bathroom crying like a baby wondering how I'm going to finish shopping. I am so sick of this . I've felt so great the past 2 weeks then bam. I wake up and can barely walk. Fml.

Kind of random, but I just realized none of my clothing fits.

I've lost about 50 lbs and didn't even notice.

I am battling some wicked insomnia. I havent slept in about 5 days.

I feel much better. Tired, but better. I'm still working on the kitchen, getting things re-organized and scrubbed. Tomorrow I'm going to reline the cabinets and drawers, and beg Jason to help me scrub the floor.

He gets aggravated with me sometimes because when I want something done, I want it done RIGHT THAT SECOND. If he won't help me right when I ask, I just do it myself.

But, right now, I dont know how long my pain will be gone. Steroid injections are dangerous, and I'm not sure how long I can take them or how long I will even WANT to. Or how long they will even work. So, in my head, I'm in "Everything must be done NAO while I feel ok"

Meh.

My vagina is broken

Without going into too much detail - I've got a nasty discharge going on. The same thing is coming out of my ears, and eyes. It's green, and gross.

Adding to the list - eye dr and lady dr.

Saw rhuematologist - I got cortisone shots in my knees and shoulder and WOOOOOW did they hurt. I actually almost passed out during the first one and they had to stop.

But, today I feel so much better. SO MUCH BETTER.

Stress

This  week a crazy man walked into Penske and shot 5 people. My husband and I knew 4 of these people personally. We've spent great amounts of time with them and their families at their homes.
2 died, and one who died was one of my husbands closest friends.
Another is paralyzed. Another is still uncertain, but as he was shot multiple times in the head, it's not looking great.

I do not write this to take away or diminish the families grieving or what they are going through, I know nothing I am going through can remotely come close to what they are going through.

That said, the stress of all of this is taking a nasty toll on me. I'm and worse than I have been since this started. I can't help but think whatever is going on stress induced or stress is somehow making it worse.