Monday, April 5, 2010

All Consuming

K. So anyone out there with chronic disease who has figured out how to live with chronic illness and NOT let it consume you when you pretty much can't do anything but sit on the couch, or lay in bed. Hmmm??? Anyone? Bueller?

Ug. So sick of this. So sick of judgement and people looking at me like I'm crazy because I'm ready to do some higher risk stuff in order to feel better. Obviously what we've been doing isn't working, so....what choice do I have? I will not sit by and let this disease take me away from my family without a fight. Because I WILL.NOT.LIVE.LIKE.THIS.ANYMORE!!! I'm not going to sit around while my son is at someone else's house 4 days a week because I can't take care of him. To he!! with that. I'm going to get better or die trying. I'm DONE.

I'm feeling a little better right brain isn't quite so foggy. (I'm getting my fiesty back, if ya hadn't noticed.) I'm tired though. Go figure. We ended up taking Jacob to the ER Friday night (after plasmapheresis) because he was screaming that his ear hurt. He NEVER complains about that. Got some antibiotics. Still has a yucky nose a bit, but his ear is "almost better."

So now it's a waiting game with the insurance company to see if they will pay for the Rituxan. If not, we have to think about the chemo/stem cell option, because the chemo is actually super cheap compared to the Rituxan. Nice.

So. Happy Monday. Whoo.


Jenxr77 said...

I just wanted to give you a big cyber hug and let you know you are not alone. I am having a rough go of it as well. I will keep you in my thoughts and prayers.

Margaret said...

I know what you are saying. I met huge resitance when I started on Tysabri but it is changing my life and I told everyone that I am going to do it and if they don't like it then get over it and don't talk to me about it.

Stay strong! You are in my thoughts and prayers!

Pam said...

you need to do what you need to do...your the only one who can decide how to be treated medically...get the help you not let others discourage you...I know it is easier said than done, but you need to take charge...Love you and praying...

Jamee said...

You poor thing! I can completely sympathize! Hopefully your insurance approves your treatments! (((hugs)))

Young Wife said...

I hope insurance pays for the best treatment, the one you and your doctors want. I'm always amazed at people with arthritis who try to tell David to just lose weight, eat organics, wear a copper bracelet, etc. It's like, do they just have mild arthritis in one finger? They can't possibly have what he has. However, I have been blown away by our chiropractor. He is so non-judgemental (even though I know he's very organic, non-traditional western medicine, etc.) about some of the higher risk meds David has to take. Praying for you!