We are so thankful! No pictures of us celebrating, not yet- I pray and hope that will come soon. There is more work to be done.
Here are some things we’ve experienced in the last few days- and some surprises:
I asked Kathryn and Dave to give me a few adjectives describing how they feel at this point- you may be surprised… drained and tired are first on the list. Then comes thankful, hopeful and strung-out.
Joe was the first one I called after infusion #4 was over (honestly, that was the only call I had the energy to make.) He cried with joy, relief and hope, and in response to the loving support from VCU mentors and friends. Perhaps we can get his thoughts onto this site soon- I love to read what he writes!
I am so thankful that while undergoing treatments #1 and #2, we were able to stay at a room that was minutes away from Dr Kirkpatrick – Kathryn needed to “get home” quickly after each treatment. Indeed, during Ketamine treatment, Kathryn had two resounding pleas…. first on the list was “please take me home!” second was “how much longer?”
Thursday night, we thought we had the hang of things a bit so we used some points and moved to a cute little Best Western on the Gulf (it has a kitchen- YEAH, real food!!) It is an hour away from the treatment center but we’re getting familiar with Tampa. UNFORTUNATELY, within moments of arriving (all of us very overwhelmed with the latest treatment- Kathryn still very woozy and out of it) Kathryn turned her right ankle (her good ankle.) Any of you familiar with CRPS are CRINGING BIG TIME right now because this is the kind of injury that can flair RSD/CRPS- BIG TIME! Kathryn (and family) had been through too much at this point, so we considered losing it. (I’m not sure how that helps things but we had reached that point.) Instead, WE PRAYED! We followed Dr Kirkpatrick’s medical advice AND THEN we prayed some more! Two days later, no complications from the sprain- praise God!
Have I mentioned previously that I am thankful for your prayers!? 🙂
Sooo, now to what you surely want to hear the most about- Kathryn’s pain. A huge part of CRPS pain is what’s called Allodynia pain. It can make falling rain feel like road burn or knives stabbing –a skin rash on her left side can raise Kathryn’s pain so high that she can’t concentrate to do school work. After Ketamine treatment #3, Kathryn’s Allodynia pain was greatly decreased and after treatment #4, it has practically disappeared. Yes it can come back, most people with CRPS have to be retreated with Ketamine. How soon- we don’t know- but Kathryn is more relaxed and happy than I have seen her in some time! Her left leg still has pain- how that will level out we do not know. We see Dr Kirkpatrick for one more consultation before leaving on Monday. Dr Kirkpatrick wants her to continue to take her pain medicine and to exercise 3 times a week in a heated pool for the next 6-12 months
We’ll eat some greasy food on the way (sorry!), and hopefully even create some good memories –despite the fact that our destination is not a resort or vacation.
Kathryn's Pages 