Kathryn's Pages

I have decided to share more of the story behind the story – to be more transparent (shout out to my sis.) Natural tendencies do not lean me toward “social networking” but this is for other RSD moms and families.

For the first three years after Kathryn’s diagnosis, I was on a roller coaster ride based on how Kathryn felt.

On a good day — when the pain is tolerable for the moment, no killer head-ache, there are friends with her who understand her need to rest and to take it easy, stress is low, maybe a summer day where there is no pressing school work — life is good. When all factors come together and Kathryn is beaming and bright enough to lighten the room and all in it (she can often manage this on the worst days) I used to get my hopes up “she’s getting better- God is working that miracle that we’ve been praying for.” Or I would go into denial mode – “All is well – she doesn’t really have RSD.”

Then inevitably, the crash — pain and illness hits as hard as ever, or she just runs out of energy to hide it and to pretend any more — reality dawns, “can my daughter really have this monster hunting her?” — day after day, relentless, straight out of the mind of Satan.

Kathryn’s goal (of her choosing or her knack for survival?) is to protect all those around her from the monster — ignore it and move on. Admirable no doubt, but at what expense to her? I talk to other moms of RSD children and this pattern is very familiar, particularly if their child is a girl. Did she learn so quickly that no one wanted to hear it, especially from a “hysterical” female?

God help us to forgive ignorant clinicians!

Sometime in year number four, I noticed that the roller coaster ride is rare. I mostly stay in a place of acceptance and non-denial now, but I can still forget how hard Kathryn has to work to hide the monster.

I remember to enjoy Kathryn and she is soooooo enjoyable — in the good times and the bad.

How does a young person get that clever and caring?

How strange that this menacing and excruciatingly painful condition often brings out the very best and brightest of Kathryn.

Hi Everyone,

It’s been a while since our last update because, honestly, we have been too discouraged to write. Kathryn’s relief from this Ketamine treatment was short-lived.

Kathryn has been using a crutch again for a week. She is still making it through a full day of school and she is swimming a little, but all is very hard, with lots of pain returning.

We think we know why her CRPS is flaring and why the Ketamine Therapy could not hold her pain down for long, but this is only an educated guess….

A person with CRPS has a “broken” pain response system. Something as trifling as an in-grown toenail or a thunderstorm can flare their pain. Also illnesses like pneumonia or other infections can play the culprit in raising pain.  

Kathryn has suffered with severe hives, rash and painful itching all over her body for 8 months now. We NOW know the source of the trouble and are treating it. Also, after 8 months of scratching, a staph infection, probably present and missed for months, is also being treated. Both the severe skin issues and the staph infection hold huge potential in raising pain in those with CRPS.

Will her pain lower when we solve these problems that have finally been diagnosed correctly? We simply don’t know- our past experience says no.

Should we try another Ketamine treatment when these other problems are solved? We don’t know.

This we know for sure… that God is in control, that he loves Kathryn dearly, (and you too) and that His help is never far away.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”   Jeremiah 29:11

You all hold a dear place in our hearts!!

Happy 15th Birthday to you Missy!!

We love you so much!!!

Kathryn’s pain continues to be more controlled than before Ketamine treatment.  We see higher and happier function… she is going to school all day and enjoying her teachers and  friends.  She went to the prom and danced and had a very fun night.  She appreciates the improvement with so much joy!  We are so thankful!!!

We had a huge jolt this week that required yet more time and doc visits- so please forgive the delay in updating this site.  We discovered that when Kathryn was diagnosed with a serious allergy to her pain medicine, the diagnosis was incorrect!!!  She has suffered with terrible itching and hives (and the elevation of CRPS pain that results) for 8 months NEEDLESSLY.   The good news is that the miserable hives and itching are very treatable and we should have this particular misery under control within the month- YEAH!! 

Kathryn is receiving some very special birthday gifts this year- gifts that can’t be wrapped in shiny paper- BUT INSTEAD ARE WRAPPED IN YOUR PRAYERS- THANK YOU TO ALL!!! 

 Jesus said, “You believe because I told you I saw you under the fig tree. You shall see greater things than that.”  He then added, “I tell you the truth, you shall see heaven open, and the angels of God ascending and descending on the Son of Man.”  John 1:50-51

Today was Kathryn’s second day back to school.  I’ll let her fill in more details later, but she has now attended two full days at school with NO CRUTCHES!  She is so happy to be back!  The first day back was very exciting, tonight she feels the fatigue catching up to her.  She receives a great deal of love and support from teachers, school staff and friends.  CRPS is hard to understand, but many at MHS have taken their valuable time to care and to learn.

Kathryn is excited to have the opportunity AND THE HEALTH to go to prom this Saturday- we’ll post pics and celebrate!

Here’s hoping for you to feel well and have fun……….. My Missy!!

There are some very special people out there-you know who you are- who need to know that we are so thankful for you!

You visited and loved our kitties while we were away, you ran errands, you mowed our lawn, you brought in our mail, you cleaned our house, you brought us amazing treats for the long ride, you offered to go with us, you remembered that we would need quarters to do laundry while on the road, you sent your love and encouragement, you offered help, you spent hours creating and managing this website, you gave money generously that made this trip possible!

You prayed and you continue to pray!

Kathryn’s treatment was part of non-profit research.  Done correctly, Ketamine Therapy is proving affective for those who suffer with chronic pain of many types- EACH ONE OF YOU HAS FURTHERED RESEARCH FOR CHRONIC PAIN WITH YOUR SUPPORT- YEAH YOU!!!

Yesterday we had the last meeting with Dr K then spent waaaay too long finding a Chick-fil-a in Tampa (old tradition after procedures are OVER.)  Then we drove home through the night- our beds never felt so good!  Dr K documented Kathryn’s improvement, gave more instruction concerning how to proceed from here, and just generally teased Kathryn mercilessly- yet again.

Dr Kirkpatrick points out, and we notice, that Kathryn’s brain, body and emotions are going through big changes!  She is supposed to take it slow… physically and emotionally. 

Kathryn’s pain continues to be lower than before treatment despite the LONG car trip home-YEAH!  (Dave struggled with the long car ride more than Kathryn did :))  Dr Kirkpatrick wants us as caregivers to note Kathryn’s FUNCTION and to let Kathryn try to decipher her own pain (deciphering pain is difficult and emotional enough for the patient- nearly impossible for others.) 

Sooo….we will switch gears right here– her FUNCTION is quite improved from before treatment.  We are to note Kathryn’s progress in warm pool exercise and in her ability to FUNCTION in all other aspects of life.  If her FUNCTION does not steadily improve, she should return to Florida for more treatment. 

You guys are the squeak to our cheese!!

“This is the covenant I will make with the house of Israel after that time,” declares the LORD. “I will put my law in their minds and write it on their hearts. I will be their God, and they will be my people.  Jeremiah 31:33

I want to be clear. Kathryn’s pain is not gone- it is lower.  She still has to take the same amount of pain medicine.

We are very very thankful for the improvement that we have seen so soon and we have hope that if this level of relief lasts, she can do rehab in a warm pool on a regular basis.

We are so thankful for the non-profit work and research being done by the International Research Foundation for RSD/CRPS and all the help that Kathryn has received! 

Of course we wish that her pain were gone!

We hope to be home and back to work by Wednesday.

LOVE AND THANKS TO ALL!