Tuesday, April 28, 2009

pictureless post

My camera's battery ran out. This is the first time. Now I know how the camera rolls. He's not into friendly reminders like my courteous iphone. He doesn't warn you that the battery has 10 percent remaining. He uses the tough love approach and seizes up unexpectedly, flashing the words REPLACE BATTERY PACK for about 20 seconds and then goes black forever. The problem is, I can not find the stupid recharger. It must be at my parents house or packed up in a box. The charger is waiting for me to go spend money and replace it before it will show itself. Its all a conspiracy and my poor pictures are being held hostage.

I guess it doesn't really matter because all I have been doing lately is obsessing over my new diagnosis. I have read and read and read and am becmoning an expert on Autoimmune Vasculitis and all of the associated diseases. Its pretty depressing. Its so rare and its uncurable and next to impossible to find a doctor who has seen it before let alone treated it. I found a girl this week through a friend who has a form of AV and she was treated in the midwest with a drug called Remicade. Her disease is in full remission for two years and she says its a miracle drug that I should try. Except that its not FDA approved for AV and probably never will be because its so rare. Also, don't let me forget to mention that it is administered by IV and you need three intravenious treatments in the first month alone and each one costs $12,000. I'm sure you can imagine that our insurance is going to be pretty excited to fork over hundreds of thousands of dollars for a treatment that is not FDA approved for my diagnosis before I try chemotherapy and all of the other things people usually try first. Assuming I can even find a doctor who knows anything about it. Its frustrating.

I'm convinced that I can find an alternative treatment or get my body healthy enough that it can balance itself out. I have a hunch that the source of all of this may be a Candida imbalance. Doctors don't really believe in that but I'm just going to keep plugging along down every road I can think of. I have an appointment this week with an MD who does believe in Candida and I have an appointment with a Naturopathic physician as well. I can't wait to see the look on the rheumatologist's face when I tell him that I didn't take the Methotrexate and that I have been seeing Alternative medicine practicioners. I can see his eye roll and condecending smirk. Oh well. Actually, I think if I go to a rheumatologist again it will be a different one anyway. I need a fresh start. Anyone know a fabulous Rheumatologist who won't think I'm lame for refusing Chemotherapy?

On a brighter note, We had a really nice Family Home Evening last night and at the end John game me an amazing priesthood blessing. He told me that through My faith in Christ I would be healed completely sometime soon. The spirit was strong and I know its true. It was a relief and I was blessed with comfort immediately.

Jack gave the closing prayer and once again prayed that Daddy would be strong and able to lift heavy things. After the prayer I said, "What about me, Jack? Don't you want me to be strong and lift heavy things?"

He thought about it for a minute and then asked "What heavy things do you need to lift?"

"Uhhh....giant five year old boys."

This made sense to him. He winked at me and said "I'll get ya next time."


Lisa said...

In the meantime, you could probably come over and use our battery charger, assuming that they are the same. Heath most likely has backup batteries and backups for the backups. And 2nd and 3rd chargers. . you know how he is.

Stephanie said...

Staci this is all awful! I can't believe it! I hope that something promising happens quickly. There is nothing worst than not knowing how it's all going to play out. That's cute about Jake. Now that kid has it all figured out doesn't he?

Chelsey Howard said...

K 1st off, I love his prayer:) That is adorable. Your boys do the cutest things ever!! 2nd, I've never heard of that disease before? I'm sorry your not feeling well, but I'm glad that you got such an amazing blessing. Let me know if there's anything I can do for you:)

Alice Jane said...

Hey Staci! I know I need to call you. I've been so busy though. First off, I've been on a medication almost just like Remicade, called Enbrel. I've got a 3 month supply (over $3,000 worth) in my refrigerator that I'm not going to use. If you end up taking it, I'll mail it to you. It's a pretty awesome drug. Second, Methotrexate isn't what a lot of online sources make it out to be. I have ZERO side effects from it. I get my liver tested every 3 months. Liver damage is one of the biggest risks. However, if you don't drink alcohol and stay on top of your testing,you'll be fine. At the end of the day, you'll have to weigh the risks to the benefits. Personally, I could either be like Josh, or take Methotrexate. Autoimmune diseases suck. I am pretty much in remission right now. It is nice to feel 30 something again instead of 70 something. I've changed my diet (no dairy or sugar) which seems to be helping too. I'm also exercising tons. I wish you could see my rheumatologist. He is amazing. I hope you can find a good support system too. That really helps. Let me know what I can do to help you out. E-mail me and I'll try to get back to you. alicejane33@gmail.com

Megan said...

Wow. Like Chels... I wish I could help but I don't have a magic wand! I can add you to my prayers and keep that faith that you'll find something! Good luck!

And seriously? Could Jack be any cuter with the wink?? Love him.

teamscow said...

Hey, you should talk to Sister Reynolds. She has a "medicine woman" in Snow Flake that does miracles. Cheryl even says she can cure cancer. It is definatly something to look into. Good luck!

Dani said...

Okay...sorry I've been bad about keeping up lately! I am so sorry that you're not feeling well. And it sucks, huh, when you think nothing is worse than not knowing...and then you know and it turns out to be your worst nightmare!!! I don't think I've been on that chemo drug...but I've been on a few others. Not fun! Good luck in all your decisions and just know that we're praying for you! Keep us posted...it is SOOOO not complaining to blog about it! It's completely therapeutic and good to get it all out! Love you!

Kramer Boys

Kramer Boys