Progress and Pain

Both of my boys have birthdays in January, so it has been a very busy month!  Jake chose to have his party at a Laser Tag spot, and Luke chose to have his party at home.

For Luke's event, the kids participated in a photo scavenger hunt, wandering the neighborhood with cameras (and adult supervision) to try to find a number of unusual items on a long list.  :)  The photo here is one of my favorties.

Progress: the kids are another year older, and they're doing well.

Sadly, I was not able to walk along with the kids.  This week in particular, my pain has been quite brutal, especially in the afternoons and at night.  I am having trouble walking, navigating stairs, brushing my hair or teeth, opening my pill bottles, pushing buttons, and so on.  It's kept me from writing in my blog (although I have voice recognition software, just using the mouse has been trouble).  I feel particularly hypochondriacal when I see how much I can do between about 9 am and noon.  I am still able to exercise, type a bit, shower and wash my hair, and so forth without much difficulty.  My joints are stiff and sore in the mornings, but I feel like a cripple later in the day.

My doctors are on the case.  They plan to change my meds and I am going to try a new rub-in joint cream. I head to Chicago on March 2 for a review in the trial, and to see where I stand with respect to the lung and skin issues.  I had hoped to gain at least a couple of years of trouble-free existence after the Cytoxan infusions, but my optimism is fading in that respect.  Dr. Burt (who runs the Chicago trial) was kind enough to call me on Friday, however, and discuss my situation.  He is open to allowing me to take just about any immunosuppressant medication that my local doctors recommend, so that is a relief and my local rheumatologist is already seeking approval from the insurance company for a new injectable.

Progress:  Dr. Burt visited San Diego this week and gave the Grand Rounds lecture at Scripps Clinic.  I am told he was very well-received, and generated a great deal of enthusiasm for his work doing stem cell transplants in autoimmune diseases like MS and diabetes.  Let's hope we see equally good results in systemic scleroderma.

*This is my second post on the new blog, so be sure to check out January's news!  I just got everything up and running, though... sorry that you didn't get a chance to see it earlier.