Thursday, December 31, 2009

My visit today

The good:

He LISTENED to me and didn't blame my weight. He said it would help, but that he didn't think it was causing it.
He does not know if its fibromyalgia or something else Auotimmune. Hes going to treat me for Fibro, and see how I feel in 3 weeks.

He gave me Flexerall for night, Cymbalta and Celebrex and a ppi (proton pump inhibitor) to protect my tummy.

The bad:
My prescriptions cost more than my mortgage. There is a chance the Dr can get them approved and I wont have to pay but $40 each next time, but if not we'll figure it out.
A NEW rheumatologist I called that couldn't see me until April had a cancellation for today (Maybe because Ive been calling daily)

Wish me luck.

May Dr. Flinkenstein have the magic he needs to fix me!

Tuesday, December 29, 2009

Self-diagnosis attempt #3214213423

I was told 2 years ago I could stop taking b12 injections. (I was taking them because people who had gastric bypass can no longer absorb b-12 properly.

I just found this little gem:

Pernicious anemia is a type of autoimmune anemia that is caused by the body’s inability to absorb vitamin B 12. The body produces antibodies that attack the intrinsic factor and the parietal cells. Parietal cells are found in the stomach lining. They produce intrinsic factor, which is a glycoprotein that enables the small intestine to process vitamin B 12. This anemia is the most common blood disorder. 

Symptoms of pernicious anemia are due to the lack of B 12 and include sore tongue, mouth ulcers, mental fogginess, fatigue, joint pain and tinnitus.

Tuesday, December 22, 2009

Wut? No answers again? Who saw that coming?

Saw rhuematologist. No answers. No new meds. No treatment for mouth. He wouldn't even TRY to treat me for pmr or rhuematoid arthritis. Even though treatment is same. 

Blood test were normal but they can be for years after onset. Oh and he told me about 30 times to lose weight. Like I didn't know or didn't hear him the 30 times he told me LAST VISIT. The whole I CANT EFFING WALK THING isn't helping either. He actually told me "I can not do anything for you until you lose weight!"
If I need to use the bathroom, I need help. If Jason isn't home I use crutches or lay on the wall and try not to fall.
Going downstairs? LOL ok.

Jason is pretty much packing Jonas and I a picnic every day so I can feed Jonas from the bed while he's at work.

I'm pissed, depressed and in pain. A semi almost hit me earlier and for a second I wished it had. I don't want to feel like this. I want to be just a little normal again. I want people to stop telling me it will be ok or asking if I need help. I want to be left the hell alone until I'm not angry anymore.

I know that's not fair and people want to help but offering to do everything for me... Doesn't help. It just makes me feel helpless. I know I need help, so why can't I just accept it and be glad instead of pissed off?
So, i think this would explain the mouth and eye thing. I think I might also have something called Sjögren's Syndrome.

The bad thing is that it's usually a secondary condition caused by another autoimmune disease.
Fun times.

Friday, December 18, 2009

Mouth Sores?

We're back from vacation. We took a trip to Gatlinburg to let Jonas see the christmas lights. 

Pain is about an 8.

Naproxen isn't helping and it taste like POOP.

My mouth!
My lips are sore all over, and my tongue and throat, too. Not sick hurt, just painful. I do not have any sores in my mouth but the corners and where my lip meets my gum have a few spots where they are cracked.

I can't eat much, everything burns. Even water.

Sunday, December 13, 2009

Dr called. My SED rates are through the roof. He thinks it's some type of autoimmune disease. Fun.

So I ran out of medrol about 4 days ago, and I started hurting a little that night.

Today is pretty bad but tolerable. I'm going to go to the store and get a space heater, and pray tomorrow they can put me on something long term before the pain is intolerable again. 
I had secretly hoped I wouldnt hurt again, that whatever it was had shut off somehow :(

Monday, December 7, 2009

Feeling better - thank you steroids!

Still feeling pretty good. Like Ive worked out too hard, but ok. Couldnt sleep last night. 

In fact, I didn't sleep any. I think thats the medrol. I have 2 amben, Ill take one tonight.

Going to get Jonas from my moms. Poor guy asked me yesterday when I called "Do your legs hurt?"

I almost cried.

I love him.

Saturday, December 5, 2009

Health Timeline

Sept - Double Ear infection and sinus infection. 2 rounds of antibiotics.

Oct 4th: Slight knee pain and jaw pain
Oct 12th: UTi and kidney infection, protein 4+ = more antibiotics
Oct 19th Still blood in urine and protein 4+ More antibiotics
Oct 15th Orthopedic surgeon and xrays = said to be arthritis in knees
Oct 20th Pain spread to other leg, hips and ankle
Early Nov = Nephrologist Protein still 4+ = pain spread to shoulders, elbows
Same week = 24 hour urine test and blood work + kidney ultrasound
Thanksgiving week = Nephrologist said all tests were normal = Cleared by him
Suggested I find a new PCP and get a second opinion
First week Dec - Went to a Dr I used to see - is doing more tests and started me on Steroids
I have been crying all day. 
I know a lot of you haven't been following healthgate 2009 but here's an update for the rest :)

Since Oct 15th my pain level has been an 8, every day. SOme days a 10. I'm not joking when I say that child birth and gallstones were less painful. The only thing that ever helped was Ibuprofen but I can't take it because of the gastric bypass, and kidney issues. Alas, Ive been taking 800 mgs a day, anyway. Sorry kidneys and tummy, I need to function and get out of bed some days.

The Dr on Wednesday gave me Medrol (a tapered steroid pack) and he's testing my thyroid and wants to look into Rheumatoid Arthritis and Polymyalgia Rhuematica, (PMR) as well as fibromyalgia.

He told me not to take it until he called me friday. Well, on Friday I started having some numbness in my hands so I called him. He said my tests weren't back. He wanted me to take the steroids, anyway. So I took the first 6 yesterday.

I took Jonas to my moms last night, since Ive not really had much of a break with him since this all started, and then I had to go get groceries last night.

I went to walmart and I PLANNED to use one of those motorized carts, but I sucked it up and managed with my crutches and cart because I was too embarrassed to even consider using the motorized cart once I got in the store.

I woke up today, and I feel amazing. My pain level is a 2, and I didn't even need help getting out of bed. I didn't need help getting off the toilet. It didn't take me 10 minutes to go down the stairs. I am so.. relieved.
So this is what I think:
1) It's not fibromyaligia, imo. Steroids don't help this disease and I feel much better, so ... I'm very thankful for this because I know some people who are basically crippled by this and its sometimes not taken seriously.

2.) The things Ive read about PMR say that the pain isn't THAT severe. And it is mainly in the neck and shoulders, and sometimes the legs, but I have it the other way around. I HOPE I have this because it goes away on its own in 2-4 years. But, the symptoms dont match because I'm in severe pain, and my lower half hurts drastically worse than my top half.

3) I don't think its gout. My toes and feet are ok.

4) Lupus was negative which doesn't mean anything, but I dont have a lot o the other symptoms.

So, I think its going to end up being Rheumatoid Arthritis, which sucks but its apparently a lot more treatable now. 

That scares me most because it's an autoimmune disease and it can affect joins but other organs like your liven/kidneys/heart/lungs.

So, I don't know what IS wrong with me, but I think I know whats NOT wrong and I think the Dr (and rheumatologist) will agree when I see them.

I, right now, only care that i feel good today. And I'm very sad and wish Jonas was here so I could share it with him. Poor guy has taken the brunt of this illness because I havent been able to play with him or take him to the park/playdates.

Maybe I'll feel good until the Medrol runs out next week.

Wednesday, November 25, 2009

Went to the Dr to get test results. Nothing shows up.

Makes no sense, because something is obviously wrong with me. I can't even get out of the bed without help. My entire body hurts. My kidneys are still not functioning. The Dr is talking about dialysis.

Something is wrong.

Thursday, November 12, 2009

Still in the hospital.

So they still think its rheumatoid arthritis but now have reiters syndrome as a strong possibility. 
I had a barium swallow and my esophagus is so swollen nothing can pass. 
The pills just stuck there on the xray but there is no tumor or throat cancer. 
You can see the whites in my eyes again. 
My blood sugar is normally low.. 60-70 but the pat few days its been 200-300's so I'm getting insulin.
They don't think I'm diabetic. They just think my body is so weak and stressed that its affecting my sugar.

The golden question every doctor and nurse has asked me?

Come on. Throw a guess out there.

Why haven't I been getting treatment.
Yes that's right.
Man you should see there face when i tell them I've been to over twenty specialist including ent, Gastro, 5 rheumatologist, nephrologists, dentists and others including a shrink because at one time I thought I was just nuts.
Clearly I'm not.
Oh I might be getting stuck with a g tube if i don't start eating. Fun times. Fun times.

Monday, November 9, 2009

Late September I had an ear infection and cold, I went to the Dr and was given antibiotics.

Oct 4th my leg started hurting, but we went to the fair and I walked around a mile and it was still sore but didn't get any worse, until a week later when I woke up and couldn't walk

it progressively got worse, I went to the Dr and they said to give it a week

Then my ear infection came back a week later. My jaw started hurting. I can't open my mouth still, a month later.

That same week I had food poisoning.

A week later I got a UTI, and went to the Dr 4 days later
It had moved into a a kidney infection. They said I had blood and protein in my urine. They measure protein from 0 - 4 and she said mine was waaay over a 4. 

They gave me antibiotics, and I got the urine test back in the mail with a note fro the Dr. When I had food poisoning, it was E-Coli which can damage your kidneys.

I went back 2 weeks later, and it was not any better. They said I have kidney damage, and want me to see a nephrologist. 
They also sent me to an Orthopedic surgeon. 

The ortho said I have arthritis. But, not both knees hurt, my hips, my ankles, my back and elbow. Plus my jaw from above.

The ortho blamed my weight, and at the time I accepted it, but now I think its bullshit.

Why NOW? Why not at my highest weight 150 lbs ago? 

I'm starting to think this is all somehow connected. I'm thinking about making a list of everything bothering me now, and going to a new Dr and asking what could be wrong with me that DOESN'T include my weight.
That list of right now is:

  • Sores inside my mouth
  • hip pain
  • back pain
  • shoulder pain
  • elbow pain
  • ankle
  • jaw pain
  • clicking in my ears when I move my mouth or swallow
  • headaches
  • protein and blood in my urine
  • eye infection that won't go away
Besides going to a new Dr, any suggestions?

I find it hard to believe I have been healthy my entire life and suddenly I'm falling apart all at once and none of it is related.