Shulman’s Accessories are all the rage!
Immediately following surgery, I started my Prednisone (steroid) treatment in an attempt to get my muscles and blood counts to return to their former glory. I continued seeing the docs on my team, averaging 2 appointments per day. My platelets were still on a free fall, so I had transfusions every 4-5 days at the Hoag Hospital Cancer Center. I always make sure the platelets are from donors who are highly intelligent and strikingly good looking 🙂 The nurses reassure me every time.
After a week on Prednisone, I could straighten my arms, bend my wrists and lift my arms overhead! It was difficult to measure progress on my legs, since I had a painful wound that the Prednisone was not allowing to heal. I was walking with a cane at this point, because my leg hurt like a m f-er. (Did I mention that one of the side effects of my taking Prednisone is that I now swear more than usual?) BIOTP (Blame It On The Prednisone) At my post-op meeting with Dr. S2 (surgeon), I told him that there was a 4″ x 6″ area, wrapping around the side of my knee that was numb. He told me that he must have hit a nerve. Groovy! He also said that he may have to go in and re-suture my incision, since it was not appearing to be healing normally. Uh, that would be a huge F-No to that plan! I became an even more diligent leg rester, only leaving the couch to go to a doctor’s appointment, a transfusion, or one of the thousand pee breaks I had to take per day. BIOTP (Blame It On The Prednisone)
Oh yes, I also went up to USC to attend Rex’s orientation. No way in hell I was going to miss that. I cruised campus all day in my spiffy purple wheelchair that Rex had rented for me, completely focused on all the handicap ramps that I otherwise usually ignore. With my immune system compromised, I stayed away from the crowd as best I could.
My team was concerned about my platelets being dangerously low, so I received 3 infusions of Solumedrol at my HAFH (Hoag Away From Home). Solumedrol is like steroids on amped up steroids. I had been taking 60mg of Prednisone a day, and these infusions were 1,000mg each. I was told I wouldn’t sleep during the 3 days of infusions. Thank God for the Olympics, which coincided with my treatments perfectly. I am a sports freak, and I watched every single event. Synchro trampoline – check. Greco Roman wrestling – check. Fencing, Judo, Modern Pentathlon – check, check, check. I’m proud to say I was also quite civically minded this week – I served jury duty in the middle of all this. I called in each day and dodged the bullet of having to appear.
The diagnosis of Eosinophilic Fasciitis (Shulman’s Syndrome) was officially made after the open muscle biopsy was examined by pathologists. Through some precious connections (Robin and Scott Venturelli), and Todd working diligently, I was able to see the nation’s #1 doctor (Dr. W, neurologist #2) for this disease the following week at Cedars Sinai in Los Angeles. He has actually treated multiple patients with EF, so we were eager to hear what he had to say. He has been phenomenal with his communication and immediate recommendations for me. He ordered a few more gallons of blood to be drawn and a chest x-ray to rule out a few other possible complications. We were relieved to receive all negative results from those tests.