2004 started out pretty good. I remember feeling pretty ok and happy with being me. We seemed to have the Sclero under control. Oh, how quickly that can change ...
In March I made my first trip to Hawaii for work. I went to work one Monday morning and my boss said, "you need to be in Honolulu by next Monday morning."
Ok. Break my heart! I made my last minute emergency trip to HI plans and off I went. I went alone because my husband couldn't take time off from work to go with me. I still had a great time. I made sure to work my butt off during the day so I could get out early and go explore the island in the afternoon and evening. Which I did.
From March through July, I traveled non-stop for work. I went to St. Louis, MO; Ft. Gordon, GA; twice to San Antonio, TX; and back to HI. With each trip, I started feeling worse and worse. My body ached. I remember that some days, everything but my hair hurt.
Now my muscles were getting weak too. Hello, Myositis. I was walking down the stairs at home and when I stepped off the last step, my leg muscles gave out and I fell. In the process, I bruised the bone in my ankle so badly that I could barely walk. But, I did. It took us 2 weeks to discover the bruised bone. In the meantime, we were trying drugs and pain killers left and right and I was STILL in agonizing pain. After 2 weeks of drugs, cortisone shots and a crap load of tests, the bruised ankle bone showed up on scans and I was fitted for a fracture boot. The day BEFORE I was leaving to go back to HI. I spent 2 weeks in HI, hobbling around with that fracture boot, but I managed to still have a dang good time.
That was the beginning of July. I returned home from that trip, to be home for a week and then jetted off to the upper mid-west with my husband and in-laws. We flew into Casper, WY where we rented a car and set out on our 2 week road trip. We visited Yellowstone and the surrounding area in WY. We drove through the Beartooth Mountains in south western MT and all the way north into Glacier Park. We drove through he Bighorn Mountains. We drove through the Black Hills and Badlands of SD. We saw a lot. This was my 3rd or 4th trip out west. My ex and I used to take 2 weeks and drive from MD to MT and back see those spots along the way.
This trip was different than any of the previous trips. My body hurt every day. All day. My feet were constantly swollen. My hands were swollen. The skin on my arms was tightening. The skin on my face and neck began to tighten. I couldn't put my own socks on. Couldn't tie my own shoes. I couldn't do the hikes I had done before. I still went. I still saw. I put on a brave face as much as I could, though my family knew I was in pain.
When we returned from the trip, I was home in bed for the next 2 weeks. Maybe longer. I canceled my next work trip to TX.
I saw the doctor often, we ran lots of tests. My pulmonary function began to decrease. I had a bronchoalveolar lavage test done, where they stick a tube down into your lungs, squirt some saline solution in there and then retrieve the cells for study. Thank goodness the knock you out!
Somewhere in there, I developed acid reflux or GERD from the Sclero. The esophagus and sphincter muscle at the top of the stomach become scarred and weak from the disease, allowing stomach acid to back up into the esophagus. Yuck! This can cause a choking hazard in the middle of the night, trust me, I know! Fortunately, there's a wonder drug called Nexium. I can't live without it. Literally. If I don't have my Nexium, I can't even drink water without reflux. Hell, I don't have to eat anything and get reflux. Nexium has saved the day there!
We began discussing a list of options. One of which, the high-dose Cytoxan study, was very drastic and aggressive. But if the disease was moving this quickly and if the test results came back showing it was scarring my lungs ... shouldn't we be just as aggressive?
Test results soon came back confirming our fears ... lung involvement.