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Thank You All So Much
Wow, I could probably never quite express my gratitude to all of you here. Simply the fact that so many of you have read my posts brings enormous comfort. I write my journal entries here as much sometimes to clear my head as to inform other people. And I didn't hardly expect so many would read it. And never in my wildest dreams would I have ( Read more... ) -
Up And Down
So, I was feeling actually pretty good since my last bronch which I believe was the 15th of February. So for three weeks I was pretty good until this past Thursday, the 8th when I had my first bronch at Mary Washington in Fredericksburg, VA. It went good. Friday I was kind of grumpy and noticed breathing was harder. Usually my breathing is really ( Read more... ) -
Goodbye?
So, since last post I've gone through the high-dose cyclophosphamide protocol at Johns Hopkins with Dr. Brodsky, an oncologist who pioneered the treatment for SAA (severe aplastic anemia, medical term for bone marrow failure often caused by autoimmune disorders).
You can read about the treatment here or here. It's a promising new protocol for all ( Read more... ) -
More Sickness News, and Stem Cells
I think I've had about two hospitalizations since the last post. The first from Oct 24-26th and the second most recent from Nov 6-18th. You might think I just love the hospital! The second one, I spent a week and a day waiting to have a bronchoscopy. The OR kept getting emergencies and not having time to do me. My rheum docs were about to strangle ( Read more... ) -
Eternally Unhealthy?
Two Fridays ago I went into the hospital again. Got out a week ago on the twelfth. I wasn't that sick. I had been achy all day and so I thought maybe I had the flu. I had had another bronchoscopy on Wednesday. Thursday night I started coughing up a lot of stuff and feeling very junky. At first I thought I was coughing because I was trying albuterol ( Read more... ) -
!
Another bronchoscopy yesterday. That brings the count to... 30, 40? Who knows! My doctor was able to inject some steroids, but otherwise unable to help at all. The two stents are pretty much stuck in there. It's not very good to have that "temporary" metal in one for so long. But he says it looks like it is encased in silly putty. However he does ( Read more... ) -
Hospital
I haven't updated in a long time. Two reasons. First, I was in the hospital. Second, getting over the most horrifying experience of my life ( Read more... ) -
Apitherapy
Monday, Mom and I visited the Bee Lady of Waldorf, Maryland for some good old-fashioned apitherapy. This is a fancy word meaning "getting stung by bees." I got six bee stings. It really wasn't so bad. Each sting burned quite a bit for the first five minutes or so, and then I forgot about them. The lady herself, Pat Wagner, has MS (multiple ( Read more... ) -
Instant Messenger
I just found this on the screen, my mom sent it to Ian ( Read more... ) -
At the Grocery Store
Ian: What are you getting a basket for?
Mom: To carry things, retard.
Giant Employee: What else she gonna use it for!