Squeeeeeeee!

Some mornings I wake up and think, oh fuck, I hate my life. I was up having esophageal issues again, waking up not able to breathe, throwing up bile. I don't think I aspirated this time. I know I'm being a whiny baby about this and the feeling does pass quickly. After a night of throwing up and trying to soothe my stomach, lungs, throat, mouth, I went next door to my amazingly talented neighbor/stylist and got a fabulous hair cut. I have a pink streak right now, by the way.

Today also brought some truly remarkable and joyous news for an internet friend who went through the stem cell transplant. It isn't my news to share so I won't post it here; suffice it to say, I cried tears of overwhelming happiness for her when I read it. That treatment is more than revelation and blessing. Actually, I don't have words for what it is.

I did have good news this week: I found a periodontist who does gum recession surgery with donated tissue. This is a big deal for me since bleeding is a serious concern and this will minimize the cutting/bleeding. Oh, and it will be far less painful. Usually, they scrape tissue off of the roof of your mouth for this surgery. Yeah, no thanks. I also found out that gum recession can be associated with scleroderma. Oddly, I may need the official diagnosis to get this surgery covered completely. The only reason I don't have one now is because we were waiting as long as we could for insurance reasons. A less thoughtful rheum would have diagnosed me long ago. Funny how you have to twist things to play by insurance company rules. They twist their end? we'll twist ours. In the end, they can all kiss my pasty white ass.

More!

My friend Kim read the blog and said I could share all of her news. It's just so wonderful! It has now been a year since she started the stem cell transplant process and her platelets are normal! And then, there is this: "my lupus anticoagulant remains negative. This was the auto-antibody that was responsible for my repeated blood clots, so that was absolutely wonderful news to get. Dr. Burt gave his approval to stop the blood thinner injections and Dr. Yetter agreed so no more daily injections." L.A. is one of the clotting factors I have, it's part of APS. This is HUGE for her. Just to give you a sense of how much her life has changed, she wrote this in an email to me:

"I am more then willing to share with anyone who might be considering transplant, so just let me know who and an email and I’ll email them if they would like. I want to share this great news with the world…it’s been way too long a haul and too many years for me to keep quiet about it. 25 freaking years of illness…my entire adult life. Now I’m really living. You should have seen me kayaking and swimming with the fish while snorkeling. Not an easy task, but so fun and adventurous. I want more! So, watch out world."

Isn't that amazing?? Can you imagine feeling that burden of a lifetime lift off of you and free you to live? I am so freaking happy for Kim I'm crying!

With the sweet comes the bitter, of course. Her insurance company approved the transplant before it was begun. When they finally tallied the bills (she had complications), they decided that $1,000,000 was too much to pay and revoked their approval. She's fighting it with an attorney and will win, of course. I mean, come on! We approve your procedure. Psyche! Yeah, um, no. My god, I hate insurance companies.

But squeeeeeeeeeee! such good news!