Kathryn's Pages

  It helps to keep busy while waiting.

Kathryn is in Forsyth Medical Center in North Carolina for a week receiving Ketamine.

  The hospital puts all patients receiving Ketamine for chronic pain in the ICU.

The last four months have been tougher than usual for Kathryn, so we are so thankful to be here!

Thank you so much everyone for all your prayers, support and love!

Kathryn Update:

Kathryn has another UTI (not good!) This is the 3rd since December- ANY sickness raises her pain severely- a Kidney Infection is what flared her so drastically in December- antibiotics and drug changes are making her nauseated.

Even with infection, alternate meds are helping Kathryn tolerate all and sleep- Kathryn has an amazing attitude filled with an over developed sense of humor and joy!!

PRAYER PUNCH LIST:

1. For God’s help as Kathryn goes without pain medicine for the next 7 weeks

2. For Kathryn to be protected from all illness and injuries that would flare her CRPS pain

3. For continued mental health and strength despite pain and strong medications

4. For treatments to be successful: long-lasting/permanent

5. For our continued trust in the Lord

THANK YOU ALWAYS FOR YOUR CARE!

When we last updated our website, we were looking ahead to a journey that seemed unimaginable!

Seven weeks ago, Kathryn was taking 40 mg of a strong pain medicine daily. This week she is taking only 5 mg daily. Next week is the first week that she must take absolutely no pain medicine — and she must be able to tolerate that for 7 weeks.

During January, February, and March, Kathryn has spent most of her days unable to be up for long.

Making the best of the day with a lesson in cookie baking!!

In early February, Kathryn made her decision to take this journey and she began the slow change in her meds in preparation for alternate treatment. (Slow change is necessary for this to be effective and for her to come off the medications gradually to minimize side affects.) We have not seen her mental strength and determination waver once through these past 7 weeks. Her attitude has amazed us!

While missing out on school, friends, and much of a normal teen’s life, I have not heard Kathryn complain once. And then there is always her humor – what a funny kid!

Many with CRPS simply cannot do what Kathryn has already done because of the extreme difficulty of stopping the use of pain medicine. It is unimaginable for many… Kathryn has almost done it! I know that God has answered our prayers and He has helped her through this difficult time.

Please pray for her as she attempts (through a foggy brain, constant pain, and fatigue) to begin to do school work again as a homebound student.

You are the best!! We love you guys!!

The bad news:

During the last month, Kathryn has been the sickest that we have seen her since she was first diagnosed with CRPS nearly 5 years ago. Her pain has spread into new regions, particularly her back. We initially saw a decline in her health in November and December, which was probably brought on by an undiagnosed Urinary Tract Infection. This UTI then became a Kidney Infection which was finally diagnosed on Christmas Eve.

With chronic pain,  “normal” or “routine” illnesses like UTIs  often get missed or even misdiagnosed. In the tangled muddle of CRPS symptoms and meds, missed symptoms can have devastating results!

Kathryn has been trying to deal with the horrific pain moving into new body parts. She is much like she was when she was a crying, suffering, fearful child of 10 years old first dealing with this monster. When the brain first tries to process this level of pain, the body can go into seizure-like spasms. Kathryn has spent most of the last month horizontal and out of school, with activities and outings extremely limited or impossible.

Each night Kathryn prepares as if she is going to school tomorrow. She plans her medicine, chooses clothes, and does as much school work as her pain racked- body and drugged brain will allow. Then she plans around mom’s work schedule in hopes…. “Maybe if I go in late… maybe I can go for a little while and leave early if I just can’t make it through the next class…”

But every day for the last month her body rebels and will not cooperate. She misses friends, teachers and she simply misses experiencing a teenage life. Dealing with excruciating pain daily and handling the daily medications is all she can manage many days.

Some hopeful news:

Kathryn traveled to the NC Pain Institute on January 28, 2013, where she was encouraged to start the long process of discontinuing her current pain medicine.

I KNOW, I KNOW!

How can she stop her pain medicine now while she is this sick with pain? And why is this information under our “HOPEFUL” section?

Because some of the alternative medicines are having some hopeful results and, most importantly…. Kathryn is more hopeful!

Kathryn and Dr. Kahn (her Richmond doctor) were originally planning to start this process in May to avoid missing as much school as possible. However, both Dr Kahn and Dr North (her North Carolina doctor) agreed that now is the time to move on with these difficult medication changes. The time is right due to this recent severe flare-up, and Kathryn has been too sick to attend school or even do her school-work from home either.

And we need to move as quickly as possible toward new treatment for Kathryn! Seeing her in pain every day is painful for all of us and we cannot begin to understand the pain she feels.

So, for the next 17-20 weeks, our only focus for Kathryn will be to help her make these medication changes and keep her as comfortable as possible during the process. We know her pain will be almost unbearable at times, but we know this is the right thing to do and again, Kathryn is hopeful.

These will be difficult weeks/months ahead, but medical evidence supports the approach. Medical research has proven that it can ultimately lead to better results from future treatments.

We are so thankful for each one of your prayers! God is faithful and he makes His help evident every day!

Please remember Kathryn and pray for healing, comfort, and peace as she embarks on yet another journey filled with difficult days and uncertainty.

Read the rest of this entry »

It is past time to give all who love Kathryn an update. She is experiencing a severe flare-up!

Last night I held Kathryn for several hours as she cried in severe pain; she was no longer able to be strong and to forget The Beast that is CRPS. (Distracting herself and ignoring the pain has always been Kathryn’s strong suit.) I have held her while she screamed in pain many times in the last five years, but very seldom since her last Ketamine treatment. My highest priority at this time is to find and schedule another Ketamine treatment for Kathryn and to find the funding for it.

Over Christmas we discovered that Kathryn had a kidney infection. As you have heard me say before, we wish that we could put Kathryn and all those with CRPS in a bubble, because the smallest illness or injury can flare their pain intensely. This infection affected her pain from the beginning but did not seem to take her down into a full flare-up at first. However, it has now! How illness and injury flares CRPS and other similar Autoimmunes is predictable by observant clinicians, patients, and care-takers, but why it does so is not truly understood.

In March, I hope to speak to a group whose ministry is care-giving. I’ll attempt to tell them Kathryn’s story and to tell them the story of CRPS as I know it. It came to me this morning, by inspiration I hope, to ask each of you who sees Kathryn out of the house in a vertical position when she is putting forth her strongest effort, to share a few of your most honest words about this odd thing called CRPS. Simply share your thoughts as you understand CRPS or as you do not understand it. You can send your thoughts to me through email at macdonaldrz@gmail.com, or you can leave comments on this site. This will be extremely helpful as I share more about CRPS and how it is understood and misunderstood by friends, family, teachers, and others in the community.

As I speak to others about CRPS, I will attempt to address how invisible and lonely chronic pain can be. I know that people who make it a part of their lives to minister to those who are suffering see many frequently repeated themes and, no doubt, will hear in Kathryn’s story much that is familiar. But I also know that CRPS has many aspects that are an unknown nightmare to most, with characteristics that are sinister, hard to hear, and hard to understand.

We continue to thank you from our hearts for your prayers. God shows his help to us every day of our lives! We praise him for His goodness and His love!

Hi Everyone,

Kathryn has toughed through a very difficult medicine change, but is managing better than expected.

Kathryn’s Teachers and Guidance Counselor at school are a big help to her and their support is amazing!

Despite all her challenges, she is driving with a Learners licence and doing an amazing job (since she was a very young missy, we let her practice in parking lots, so she drives like she has been driving her whole life.)  She continues to push herself to do many things that are normal for her age.

Please pray (continue to pray) that we find a local doctor who will do a Ketamine treatment with in our insurance network; she needs another treatment.

WE HAVE A SPECIAL PRAYER REQUEST for our friend Apryl who we told you about on the Oct 19 Update. She has gotten very sick and has been in the hospital. She had a much needed surgery, but bodies that have CRPS generally DO NOT LIKE SURGERY! She is NOT doing well right now and so I am asking all to pray for her as you pray for Kathryn: confidently, for God’s ever-present help, given to us in perfect love.

We love you and hope that your Christmas preparations are easy and full of Christ’s light!

As we were leaving Kathryn’s first Ketamine treatment at Dr Kirkpatrick’s, a lovely young women-Apryl, and her amazing mom-Toni, were just coming in for Apryl’s first Ketamine treatment. Toni and I have stayed in touch and communicating with her has been a true blessing that I am so thankful for!

Apryl, like Kathryn, experienced some relief from her CRPS pain through Ketamine treatment, but she is in need of prayer today. Her pain has flared again to an excruciating level. Please pray for Apryl today, and for all those who suffer with chronic pain!!

When I first met Apryl her pain showed on her face so clearly, she has been a part of my heart since.

We have seen some very tough pain in Kathryn since the last POST. We are beginning to think about Kathryn’s next Ketamine treatment, although Kathryn is not ready to go through that again yet!

Please pray for me as I continue the difficult process of investigating CRPS treatment possibilities.

LOVE AND BLESSINGS  -Rita

Hi Everyone.  A local Jewelry Artist named Heather Morgan created and donated this amazing Fundraising CRPS Awareness Bracelet for us! All proceeds will go towards Kathryn’s medical expenses. Heather was inspired to highlight a “fire” bead dangling from this bracelet in recognition of the vicious pain, often like fire, that is RSD/CRPS. These bracelets have raised $120 in only three days! Thank you so much for all your love Heather, as you stir hearts to care about CRPS!

Kathryn’s Fundraiser total is much higher than the total listed on the “You Caring” site due to generous donations given directly to us. The total raised since the second Ketamine treatment is $4,465! We are humbled, thankful and awed by your generosity! Thank you so much EVERYONE!!!

Kathryn’s attendance at school is averaging about 4 days out of five each week. Sometimes she needs to go in late or miss a full day of school but she is giving it her all. She has been able to keep current with all her school work so far. She often takes a crutch with her now, but does not need to always use it. She walked 4 blocks today and walks all the long halls at school. School teachers and administrators were very helpful in preparing a 504 this year to ensure the accommodations needed. Kathryn’s attitude always amazes us- we see that she is sick with hurting and meds, but she is most often the brightest light in the room.