Random events of the last two weeks:
Wednesday before last, Josey fell again while I was at work. She thought it was funny but me, not so much. Sixteen-year-olds aren't supposed to fall regularly. This one left her sore and stiffer than usual.
Josey, Ally, and I went to the first meeting of the Tennessee Lyme Network support group. It was a good group and we plan to keep going. Thankfully, Josey had a good afternoon/evening and was feeling well enough to go. She met another teen with Lyme and the parents of two others, who hopefully will come next time.
All my patients who have a fibromyalgia diagnosis have now been contacted and given an opportunity to go over questionnaires/screenings for Candida, Lyme disease, hormone imbalance, and allergies/mold problems. No pretending by me that I can diagnose, but Jo's LLMD gave me lots of information and said it would change my practice. He was right and I've made several referrals for testing. Just today, I saw a woman who has been passed from doctor to doctor and dismissed repeatedly. She left my office crying happy tears and feeling hope for the first time in a very long time.
A couple Saturdays ago I spent the day volunteering alongside a teen who has a tentative diagnosis of Juvenile Rheumatoid Arthritis. This week her mom and I spoke on the phone and they will be requesting a Lyme test for her. Her symptoms and Josey's are almost identical.
The back, leg, and hip pain returned with a vengeance for several days but seem to be receding. Josey has had a hard time moving at all some days this week but gets some relief in the afternoon and evening. We are truly thankful to have the wheelchair when she needs it.
Suddenly we're noticing new symptoms and think it will turn out to be her thyroid. She has no appetite to speak of and instead of searching for recipes, I'm just hoping she'll eat an egg (egg white, actually), drink a whole glass of water, or something. Her hair texture has changed, too.
Jeffrey gave out "fight Lyme with Josey" bracelets to his regular classroom and to his APEX class. This gives him a way to participate, lets him share about Lyme disease, and tell people about his sister. Also, Josey's cousins have gotten lots of bracelets out there. She really does feel supported when she knows people are getting and wearing the bracelets. It's remarkable how that cheers her up. Thanks to all of you who help by wearing them and sharing them.
Just to rule it out, I've decided to encourage my older daughter to get tested for Lyme and Candida. She has gastroparesis, supposedly due to a near-fatal car wreck in 2012. She's also missing her spleen. For years she has had mystery headaches, numerous infections that were more severe than her doctors expected, fatigue, trouble concentrating, and sleep problems. She also has a lower than average body temperature. All those things could be due to something else but it's certainly worth checking.
Another of Josey's best friends is doing her junior-year research paper on Lyme disease and LLMDs. Jenna wants to be a doctor and has gone from interested to frustrated to angry. I think she mentioned "overthrow the government" as her next option. :) Hopefully one day she'll be an amazing LLMD herself. At least she will be personally aware of the reality of this disease and how it's been dealt with. What a cool way to show her support for Jo!
Til next time. - J