Unicorns, Zebras, and Steroids. Oh, My!!

It's been a tough week. Medically, emotionally, and physically. I've been meaning to blog all week and haven't had the energy. So this is a long one!

Monday started with some sad kindergarten friends. Apparently, they thought that after the weekend we didn't have to come back to school. ;) Preschool and Pre-k are wonderful things! Please send your kids!! I have quite a few kindergarten friends who are having a hard time adjusting to life at school because they've never been anywhere with such structure and routine. 

Monday afternoon I went for an appointment with my regular doctor. It's been such a crazy week that I can't even remember why I got the appointment. I'm not seeing any results from the cyclosporine. And it causes extreme joint and muscle pain. I had some blood work done to make sure that I didn't have a muscle related autoimmune condition. My immunolgist thinks that I may have an underlying condition since all of my angioedema swelling is "atypical". No one seems to have any answers as to what that underlying condition might be. 

My regular doctor explained his reasoning for more blood work with this story: Three people are sitting in a doctors office. They hear hooves outside the door. Two people assume that it is a horse, but one thinks outside the box. They open the door and see a zebra. All of my doctors are trying to figure out the what else may be standing outside the door with "the unicorns". Ugh. Very frustrating. 

Tuesday and Wednesday were long days with meetings after school both days. That meant late naps (6:00pm), waking up to take nighttime meds, and then back to bed. Wednesday night I went out to dinner with my church friends! It was so nice to be normal and catch up with good friends. 

Thursday was a repeat of the other days this week. I had lots of über swells, clothes not fitting, and just plain feeling terrible. 

Friday morning I was feeling like I was getting a cold (thank you gooey kindergarteners). Feeling bad on top of feeling bad is pure misery. I was too sick to eat breakfast. I take two lunch bags to school. One for lunch and the other for my snack and my caffeine boost. Well, it helps if you take the right lunch bag to lunch. It worked out okay because I didn't feel like eating. Was way to swollen anyway. I was walking out of school and saw our custodian, Mr. J. I must have looked as bad as I felt. He told me that he wanted the old Katie back. I told him I wanted her back too. :(

I got home at the same time as my mom did from school on Friday. I got out of the car and burst into tears. I felt horrible. I was exhausted. I was over it. Stood in the driveway crying. My mom (who is the best!!) did her usual thing, getting me ice packs, cold cloths, and emergency meds to try and make me feel better. I felt so swollen on the inside and outside. I ended up throwing up. I despise throwing up. I would rather be sick so many other ways than throwing up. With the throwing up and knowing that a bad side effect of cyclosporine is high blood pressure, we were both concerned. I normally have low blood pressure, so when our home blood pressure cuff had a sky-high reading it was off to the doctor. It was 4:30 on a Friday. Thankfully they said we could come in and see my regular doctor. I scare the people at urgent care and the ER with all my meds, symptoms, and things they've never heard about so going there is a last resort. 

My blood pressure had settled down by the time we were seen, but my doctor still said that I was "puffy" and he wanted to put me back on prednisone (the steroid) for a few days to try and control some of the bad swelling. 

He put me on 20 mg twice a day. That's a pretty high dose for me. I haven't been on 40 mg since probably around January.  It's only for 6 days until my appointment with my immunologist. We left the doctor and when we got back home and I took the prednisone, I started throwing up again. Not sure if since I'm immunosuppressed that I caught something or if I was so über swollen that there was no room for anything else in me. I took a nap and woke up around 9pm to try to take my nighttime meds. Thankfully, they stayed down! Then my mom woke me up around 11:30pm to take the prednisone again since the first round didn't stay down. They stayed down too! Then back to sleep until morning. 

I woke up feeling weak but a bit better. I've been sticking with crackers and coke zero today. Just in case! My mom was watching the Today Show this morning and yelled for me to come see something. It was my Vanderbilt doctor!! He was talking about allergies caused by ticks. It was so bizarre to see someone I know on the Today Show. 

I've been resting a ton today. But my hives have been acting up. Go figure. I think the salt in the crackers makes them worse. Ugh. Going to try a baked potato for dinner. 

This coming week at school is busy. Lots of testing, probably a bit of crying, and Open House. Whew, I'm tired just thinking about it! Oh and I forgot the immunologist appointment Thursday after school. I'm praying for some serious improvement before then. If not, we are running out of options and don't know where to go next. 

Actress Angie Harmon posted this on Instagram yesterday:

I needed to see it! God has a plan and is in control of all that I am going through, but it is still a tough road. Thanks for traveling down the road with me. It's easier knowing that so many people are praying for my healing!