Prednisone, Swearing, and the Olympics

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.

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

4 thoughts on “Prednisone, Swearing, and the Olympics

  1. Okay, I am now just getting up to speed with your situation and let me just say, Wow! What a nightmare you have been enduring! I myself, am extremely familiar with what the pulse treatment is (1000 mg Solumedrol a day x 3 days) and 60 mg of Prednisone/day and i know how fun that is! How is the bouncing off the walls going, anyway?! And swearing more?? How about becoming a total psycho?! (that would be me!). I can so relate! I will call you when I return from Hawaii next week…I think we need to chat! For now, you have my love, my undying support and understanding. I had no idea that you were going through all of this and I always find it is nice to talk with someone who has a clue of what you are experiencing. No pressure, but I’m happy to chat if you’d like~

    XO,
    Barb

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  2. Barb has always had such a positive attitude and most people would never have guessed the challenges that she has endured. You are both strong, amazing women! Hang in there, Joselyn, and I hope you feel the love and support of your friends. xo

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  3. Joselyn – I never knew that you were such an entertaining writer. Brother’s Lombardo just got the memo about all of this so just getting up to speed. Having said that, I’m surprised that with all of the Olympic viewing we did not get a shout out in the form of “Greco Roman Wrestling – check, Brother’s Lombardo Spotting – check, etc.” I know that you are an international Don Juanita and probably recognized many people in the stands but were any of them better dressed than us!?!
    KUTGF(Keep Up The Good Fight)

    Fight On – Brother L #1

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    1. Brother L #1 – We definitely saw you guys in the crowd at the various events around London! Looks like you had a JOFGT (Jolly Ole F-ing Good Time)! There was no competition as far as your USA fashion! You all get the gold medal 🙂 Thanks for the KUTGF encouragement – it means a lot! I miss hanging with the Brothers L! Please send my regards to #2. Hope to be back in SAS shape soon so we can continue our adventures with you crazies 🙂 XO

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