Kathryn's Pages

Kathryn just finished 2 treatments of Ketamine in NC and we are headed home.

Her participation in the Neridronate drug study is rescheduled to October and unfortunately this is the last Ketamine that she can have before the study. We pray that she can hang in there until November on less pain treatment and we wish that drug companies would consider more carefully the daily life of a person with chronic persistent pain as they determine the disqualifiers for pain patients. One med that disqualifies her for the study is still in her body despite 6 weeks without it, but we feel confident that it will be out of her system in time for this scheduled participation in the Neridronate study.

Despite higher pain and lower meds Kathryn has gotten things rolling with college. This week on the way out of town for Ketamine treatments, Kathryn met her VCU Disabilities Case Manager who is very helpful, supportive and kind. We are so thankful for that! Because of CRPS she met an advisor in lieu of a 2 day VCU orientation, she’s taken her placement tests, signed up for a couple of classes and was able to get a parking spot close to class in order to lessen the pain of walking before class. This fall she’ll do fewer classes due to higher pain and traveling to NC for drug study.

Sending our love to you all; we’re so thankful for your prayers!

The unfolding of your words gives light; it gives understanding to the simple.
Psalm 119:130 NIV

We are so sad to tell that Kathryn is having a severe flare of CRPS pain!

She was feeling better June through October. Kathryn has been attending half days of school fairly regularly and she has really enjoyed consistent learning! She even found a little energy for extracurricular activities. She made it into Tri-M and has been preparing for All State guitar. She’s been able to attend guitar lessons twice a month and even had some energy left over to visit with friends. Its been such a relief and joy to see her have some normalcy in her life again!!

Please continue to pray my sweet friends; there are so many who live with chronic pain! Please pray for relief, strength, answers and wisdom for patients and families who fight to have a life in the midst of chronic pain!

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