Can’t believe it’s been 10 days since my last post. Good things are happening here in Cincinnati! At Alyssa’s last doctors appointment (last Friday) we were adamant that something different needed to be tried to address the swelling in her knees, ankles and feet. It was getting to the point where even 20-30 minutes on her feet was creating a ridiculous amount of pain and swelling that was then causing her to become immobile. To think that she was going to have to deal with that for 2+ months (until she was off steroid) was just not going to cut it. So, Dr. Nelson allowed her to reduce her weekly steroid taper by 20mg instead of 10mg and then put her on a different diuretic. With 24 hours on this diuretic, her swelling was noticeably improved. And for the last 3 days, her feet and ankles have looked completely normal. She’s still having pain, but nothing like it was before. She goes back to see the doctor on Friday, so maybe he’ll continue to allow a little bit faster wean off the steroid. One thing I have learned throughout this process is, you better take ownership of your illness/pain/recovery. I know these doctors have her best interests at heart, but they are not infallible and they do not have all the answers. Lots of things are trial and error and if something is not working, it’s time to try something else.
Now that she’s got this swelling under control she has become much more active. She does “mini” workouts here at the house and tries to walk a mile or two each day. It certainly helps that the weather has gotten better. Her PT schedule is a bit erratic...they were only able to get 4 appointments scheduled for this month (too many patients, too few therapists). Her first session isn’t until May 14, but she’s doing plenty of stuff on her own so I’m not sure that’s even a big deal.
Yesterday was her 23rd birthday. Her best friend from college (Jess Lucas) came up to see her and Jared is here for several days. So that made her VERY happy. We just celebrated by going out to dinner. She got a new bike for her birthday and is very excited to start riding. The last 8 months have almost become a blur. It’s easy to forget how much she has been through in such a short period of time. If she didn’t have her chubby steroid face and fuzzy head, there are days I wouldn’t even know how sick she was just 3 months ago. (Check that...1 month ago she was in horrible horrible pain from GVHD) The body is an amazing thing. But even more amazing I think, is how much someone’s will to get better can make such a difference. She’s convinced herself that this nothing more than a blip on her radar and she is going to move forward with her life. I know she still has a long recovery ahead of her and I’m terrified that a random exposure to someone sick can easily put her back in the hospital. But you can’t live your life fearing all the “what if’s”. I know first hand that Alyssa doesn’t and I love her all the more for that.