Friday, April 24, 2009

I am so sick of being sick.

I don't think of myself as a big complainer and I always thought I had a pretty high tolerance for pain but this post is going to be a big whining session about my health. I'm hoping it will be cathartic to get it out and I am totally open to any ideas anyone might have to help me.

I don't even know where to begin. For years and years I have had these weird bouts of symptoms. I get this weird migrating joint pain. The affected joints get hot and red and swollen and I never know if it will last for half a day or weeks. Usually its in my hands and feet but sometimes it gets into my knees and elbows too, and there are times when I feel literally crippled for days on end. The weird thing is that I also get these big horrible open sores on the joints and sores in my mouth too. There's a whole list of other things like insomnia and randomly occurring numbness, but I won't bore you with all of the details. The flair ups used to be just annoying but now they have gotten more and more frequent and more and more severe and its starting to overtake my life. Its painful but its also really scary. I have always taken my good health for granted. I never will again.

I have been to literally dozens of doctors and specialists. I have had every blood test, x-ray and analysis you can think of. I have been to Rheumatologists, Allergists, Internists, and Neurologists. Everyone is stumped. All the tests always come back perfectly normal. Its not Rheumatoid arthritis, its not Lupus, Its not an allergic reaction, I have no deficiencies in my blood. I have had MRIs and brain scans and full body X rays and everything looks perfect. They always tell me this like its great news and I guess it is, but I start to feel like I'm losing my mind. I have been on prednisone, percocet, antibiotics, etc. etc. and nothing makes anything better. at all. I have always said I would rather have a diagnosis and a game plan than a medical mystery. After the doctor's appointment I had this week, I would like to officially take that back.

Vasculitis. Inflamation of the blood vessels. The doctor looked at my newest rash and my swollen hand and said shrugging his shoulders "I think you have Vasculitis, and I want you to try Methotrexate." It was said casually and sounded a little like he was making a wild guess. like, "I think its going to be cold tomorrow so I want you to bring a sweater."

My response: "What is Methotrexate?"

His response: "Its Chemotherapy. We'll try you on that for maybe six months and then we'll have a better idea of what will work for you."

Chemotherapy? What in the hell? There is no way in the world I am going to take chemotherapy without a second opinion first. Wait a minute, scratch that. There is no way in the world I am going to take chemotherapy. period.

If I do have vasculitis, something has to be causing it, right? Can we please try to figure out what is making me sick? We discussed it for a few minutes and the bottom line is they have no idea what causes it, not treating it is a dangerous choice because it gets worse and worse until it is affecting large blood vessels and you end up with aneurisms and crap like that. I walked out of the office feeliking dazed and holding half a dozen perscriptions. Oh, and I don't want to forget my favorite part, when I told him that I'd like to have another baby soon and he told me that I would be crazy to even think about getting pregnant.

Okay, so thats my sob story. I'm glad I got it out there. I know there are far worse trials in life and I feel indulgent and ungrateful to spend even one minute complaining because I have been blessed with SO MUCH. And it could be so much worse too. My good friend Julie's two year old baby girl is in the hospital recovering from one of a series of heart surgeries. I looked at her blog yesterday and she had this picture of her precious child hooked up to breathing machines and fighting for her life and I thought, Thank you, God, that my problems are so trivial.

I have some research to do and some decisions to make and I have an appointment with a Naturopathic doctor. I have been feeling guided by the Spirit in my search and I am actually feeling like things are going to get better and I am going to get it all figured out soon.

Tonight Jack's prayer was great. "Please bless Daddy to be strong and lift really heavy things and play clone troopers with me. Please bless mommy to feel better and not hurt anymore. And bless me to not pee the bed." I love his prayers and his faith. I think it might even be better than Methotrexate. In fact, I'm feeling better already.


Alice Jane said...

I take methotrexate. It is a miracle drug for me. The only downfall--you can't have a baby while you're on it. I sure hope you get it figured out. Is it the Haws blood in us that is making us so sick. Blah! I hate it.

Anonymous said...

Our thoughts and prayers are with you and your family. What can we do to help?

Stacia said...

I am sorry you have to deal with this. It's not trivial. It's difficult when your quality of life is taken from you and you can't do anything to help it.

I will pray that you will find answers soon that will help you recover.

Anonymous said...

hi staci, did you call raina? she didn't take methotrexate it was something else, remicade, have you heard of it?

Mom said...

Hi, Stacie. Brenda's mom here. Just checking your blog from Brenda's. Sorry you are so darn sick! It is not whining to share such life wrenching difficulties with people who care. I would not know where to begin to deal with any of that. Our prayers include you. Hope you find answers and relief soon. Thanks for all your help and support to Brenda. One good thing in all of the last several months has been meeting you and your family. Thanks again!

Courtney said...

Yikes...this doesn't sound fun! I am sorry...let me know if you need to play or drop your boys to play or anything.

email me and we'll exchange numbers!


Anna Arnett said...

Oh, Staci, what a bummer. It's not what I'd have chosen for you, either. But don't give up. Your trust is in the right place, and out there, somewhere, is help. We'll just have to find it. (I'd better stop now. I feel a sententious phase coming on.)

And I absolutely love Jack's prayers.

And all of you, too.


Tara said...

I will definitely be keeping you in my prayers. I'm sure everything will turn out right. You are so amazing and I LOVE your attitude. It's ok to have a little pity party every now and then. Get well, and tell Jack good luck with the bed wetting situation :)

Alexandria said...

That seriously sucks Staci! I'm so sorry you having to go through this. I'll ask around work to see if any of my doctors have had any experience with treating AV.

I loved Jack's prayer. He is such a sweetheart.

Hang in there!

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Kramer Boys