One of Us

Someday, the light will shine like a sun through my skin & they will say, What have you done with your life? & though there are many moments I think I will remember, in the end, I will be proud to say, I was one of us.
-Brian Andreas

I attended my first scleroderma support group this past Saturday. It is a strange and comforting and disturbing experience: I see around the room the old me, the present me, and the future me. Kind of "A Christmas Carol" moment. :) But, more importantly, I enjoyed just meeting new friends and laughing about some of the unusual shared issues faced by those with this disease.

I am also a week away from the answer to the question that seems to be most concerning to me of late: what is my pulmonary artery pressure? I will celebrate Valentine's Day with my cardiology team in the cath room and hope for good news there!

Just hoping the weather's not too ugly in Chicago next week... we have enjoyed, as my friend Marcy says, Chamber of Commerce weather the past few days in San Diego. Gorgeous, sunny, crisp and clear. I had a wonderful ride on Xander this morning and was even able to sneak in a little trip to Disneyland with my children, husband and parents last week!

I feel my arthritis slowly but steadily creeping back up on me. I didn't miss it while it gave me a brief respite. Just hoping the big news is good news. Wish me luck!

Bad to the Bone

I spent the last couple of days meeting with my medical team here in San Diego.  I saw my wonderful pulmonologist, cardiologist, and rheumatologist, and spoke at length with my primary internist.

I like what my cardiologist said... he, like most of my doctors, didn't want to sway my decision.  But, as we discussed my options, he determined that I had a bad option and a worse option.  "The trick," he advised, "is to pick the bad option."

I'm here to tell you honey, that I'm bad to the bone.

I have decided to proceed with the stem cell transplant, off study and fully aware of the risks of a transplant with PAH (pulmonary arterial hypertension).  I'm pretty sure that's the bad option, and I embrace it with optimism.