I may have paraphrased a little, but these are some of the actual “truths” we have been told by professionals, that is, people with specialized training, regarding Cee’s situation.
-Mayo isn’t as great as everyone thinks. The people in Rochester choose to go to the local hospital instead of Mayo. That says something.
-Mayo is the best place for specialized care.
-Whatever you do, Cee should not get cold. Use heat when she’s in pain. Cold will make it worse.
-Cee should only use ice on her painful joints, heat will make it worse.
-If Cee is in pain, she should use ice for the first 24 hours, then heat after that.
-Steroids will bring her inflammation down. In small doses the side effects aren’t as pronounced. It would be crazy to not start steroids.
-Avoid steroids at all costs. The effects are not worth it. It would be crazy to start steroids.
-Chiropractic care can make a difference for Cee’s wellness.
-Do not take Cee to a chiropractor ever again.
-Avoid canola oil. Use coconut oil instead.
-Avoid coconut oil. Use canola oil instead.
Basically the only thing everyone agrees on is that Cee is not doing well, and she should drink plenty of water. And get sleep. Thanks for coming, you can pay your co-pay on the way out, and Cee can pick out a sticker.
One of the biggest stressors for David and me is to figure out what to pursue, continue, or abandon with Cee’s treatment.
As far as the progress we’ve made, seems like we would have been better off going to Target, buying a bunch of stickers, and using all those co-pays to take a 3 month-long vacation to Disneyworld, staying at the resort and eating $10 hot dogs off of Mickey Mouse napkins. Princess themed ice cream cone? Yes, please! We could have come back and been right where we are now. Except David and Cee would have tans. (Elle and I would just be slightly pink.)
Lest I sound too bitter, I know everyone genuinely wants to help. It’s just frustrating to have spent 6 months floundering. We had a few weeks in there where things got so much better, but the memories of those days are already fuzzy.
Sometimes I forget that our life isn’t normal. We’ve sort of adapted to where we are right now. When we go places and people see Cee, though, I see them react. I see their faces change, and I see her through their eyes. And I remember how un-normal this is.
At this point we would give anything to make Cee better. Anything. The hard part is figuring out what “anything” is.