Kathryn's Pages

Kathryn is feeling better!! How fun it is to write those words!!!!!!!

Less pain, less fatigue, less headaches and chronic nausea is gone at this time!!

Only a few weeks ago Kathryn’s CRPS pain was a 7+ and climbing; it had again spread to her entire left side and to some areas on her right side as well.

Her body was following the same pattern it has followed for years. It’s been 4 months since her hospital Ketamine treatment so she has been due for a Ketamine booster for some time. Kathryn decided to delay Ketamine because she was trying to push through some school work and school activities. The rising pain and the crippling fatigue and nausea were fighting against her every day.

Then, about a week ago, Kathryn’s health made what looked like an overnight turn after we changed some things in her environment! We have added several changes in the last few months including food, supplements and purified water that we suspect may play a part in her turn-around as well.

Today her pain is averaging a 5 and it encompasses only her left leg. This reduction in pain intensity and area occurred without a Ketamine booster and without any additions or changes in traditional medicines or treatments.

These changes are breathtaking for me as a mom -I don’t have words to describe it!

You see, there has not been a lowering of pain (without a Ketamine treatment or nerve block) in my daughter in more years than I want to think about. Since April 1, 2008 Kathryn’s pain only wanted to go in one direction, AND THAT IS UP!

  Daniel: Praise the name of God forever and ever, for all wisdom and power belong to Him. He sets in motion the times and the ages; He deposes kings and installs others; He gives wisdom to the wise and grants knowledge to those with understanding. He reveals deep truths and hidden secrets; He knows what lies veiled in the darkness; pure light radiates from within Him. I recognize who You are, and I praise You, God of my ancestors, for You have given me wisdom and strength.   Daniel 2:20-23 THE VOICE

Here is more information about what we have been doing for Kathryn that is most likely responsible for her feeling better. In this blog I’m including more detail than usual. This detail isn’t included for friends and family as much as for those searching for answers as they (or their loved ones) suffer with similar chronic illness.

About six weeks ago Dr. Cathryn Harbor, Lexington Va., told us that she believes mold has been a culprit in Kathryn’s illness for a long time. We considered moving Kathryn to a newly constructed apartment for a while as a test and to decrease her exposure to AC mold. As a less extreme alternative, we allergy proofed her bedroom. The thought was to give her body a 10 hour a day rest from what doctors speculate is making her sick. If we continue to see improvement in K, we will most likely do home remediation in our present house or in a new construction.

Before committing to the extensive work, expense and disruption to our lives that mold remediation or moving can bring, we decided to start with some relatively minor changes. Again, these changes have been made so far only to Kathryn’s bedroom.

*Changes are listed here in the (slightly random) order we did them in:

• remove all wall hangings, posters, books etc
• removed all carpet and all upholstered items out of Ks room
• wiped all wipe-able surfaces with bleach/water mixer -floors, walls, furniture, shelves
• put clothes in plastic tubs after being washed
• use air purifier with HEPA filters
• use sealed/zipper vinyl bag on mattress and box springs (Bed Bath and Beyond -$18.00 for Q) MARKED RESULTS FOLLOWED THIS CHANGE!!!   [In July 2014 we replaced Kathryn’s mattress and box foundation with an easy to clean metal foundation and foam mattress. We chose a foam mattress that was tightly sealed after manufacturing. Standard mattresses may sit in a warehouse for months loosely sealed and that warehouse may have air-conditioning mold similar to our house. We have continued to see this help Kathryn!!! -updated 8/25/2014]
• new pillows with vinyl covers
• wash linens and blankets frequently
• closed off central AC duct into Kathryn’s room and installed a new window AC unit
• purchased new HEPA filters for vacuum

*Additional changes and treatments introduced within the last 2 months could be part of helping K feel better, but her health turned better quickly and immediately after mold remediation to her bedroom. These other changes and treatments include:

• Avoid Canola or other GMO’s in diet
• Semi-organic foods
• Nutramedix Cowden support for Lyme disease
• Whole house water treatment system (we love the way our water tastes now!)

Additional Taglines: RSD, multiple autoimmunes, chronic fatigue, Lyme disease, chronic nausea, migraine headache, muscle pain, joint pain, air conditioning mold, duct board

We are very concerned that mold in our AC system may be a culprit in Kathryn’s health issues.  Please pray for our wisdom as we decide how to proceed.

LOVE YOU GUYS!!!

Ok Pastor, here goes…. this is one of those times that I will trust that I lack nothing, that He makes me lie down in green pastures today in the midst of all this muck, that He leads me beside quiet waters today and refreshes my soul for His name’s sake and therefore that my cup overflows. CLICK AND READ MORE→ Ps23_2014

For God is with us, and surely God’s goodness and love will follow us all the days of our lives.

I am very delayed in getting an update to you and I apologize!

As Kathryn’s mom and advocate I “hit a wall” after her last treatment. Kathryn’s experience during the last Ketamine was truly horrible. Add in that during treatment we received news of my brother’s sudden death, and that since the last treatment Kathryn has not had a morning free of disabling nausea, headache and extreme fatigue, for which her doctors have not found a solution.

Her CRPS pain returned at 6 weeks post treatment, but not at full force. So at this time pain is usually not the main symptom that is keeping her away from life at times, but it always adds to the fatigue.

Kathryn has had many times of feeling well enough to enjoy and be very thankful for the relief from pain that the last treatment brought, and the extreme difficulty of the last treatment need not be repeated as it was due to a medicine error.

She is seeing new doctors for the unexplained nausea and fatigue and this Monday May 5^th we travel to Lexington Va. to see a specialist there.

Kathryn is pulling on all strength and hoping to attend 2 “normal kid” High School events this weekend that are very important to her! She hopes to be able to take the SATs and to attend Prom.

Her nausea is most disabling in the morning and so, the SATs starting at 7:45 on Saturday morning presents the biggest hurdle. She is trying to remain low key/ low stress about these events, but I am asking all those who care for Kathryn to pray for her this weekend and in the coming weeks as we continue to seek help from new doctors.

Always in thanks and love for all of you!

“Be strong and courageous. Do not be afraid or terrified…, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

This was supposed to be an easier time for Kathryn, the sweet spot after treatment when she is CRPS pain free. These are the weeks after treatment when lowered CRPS pain means higher function…. life should be better and fuller now!

But Kathryn has been sick much of the time since treatment. As we mentioned earlier, this treatment was VERY DIFFICULT on her body because of a mess-up in medication.

Kathryn’s pediatrician examined Kathryn this past Monday and felt very confident that the medication mistakes that happened during treatment are easily the reason that Kathryn still feels so sick at times. She also warned us that Kathryn’s body will still take more time to recover. But it is hard for me to be patient right now! I want my sweet daughter to be able to enjoy her lowered pain and that is hard to do when yucky symptoms often force her to be horizontal!

The most disabling symptoms plaguing Kathryn since treatment are nausea and migraine-like headaches. Sometimes these symptoms are mild and sometimes they are crippling; mornings are often the worst.

Some days Kathryn’s health seems to be declining and she is sick the whole day. Other days we see improvement and she goes to school with her usual bright attitude and sunshine self. She is missing classes often, yet these first 2 months after treatment are supposed to be catch-up time at school.

I thank you all for your many prayers over the years and today I ask that you please pray for Kathryn again! Love and blessings to all!

“Hear my prayer, Lord;
listen to my cry for mercy.
 When I am in distress, I call to you,
because you answer me.” Psalm 86:6-7

How precious it is to know that Kathryn is going to school without pushing through intense pain!!

She had to go in late today due to nausea and a medication taken for nausea (nausea can be a common symptom after treatment and is probably due to the extreme medication changes that occurred before, during and after treatment) Even though she is going in late, today she is walking into her school with only muscle pain, NO CRPS PAIN!!

Recovery from this treatment is slow, due probably to an error that occurred in Kathryn’s meds during treatment and to Kathryn grieving along with her family over the sudden loss of her Uncle Paul.

Today is her second day back to school; yesterday she did a full day in school, YAY!!

Teachers and administrators have been amazing!! This CRPS monster is so odd and hard to understand, yet they have struggled to understand, care and support through a situation that makes their work more difficult as well.

It’s with great emotion that we again thank you all for your precious prayers and support!

Our hope for Kathryn is permanent remission from CRPS and good health.

Our trust in is God and His love for His children and His Kingdom.

Praise God, from Whom all blessings flow!

My son, if your heart is wise,
then my heart will be glad indeed;
my inmost being will rejoice
when your lips speak what is right. Proverbs 23:15,16

We are so thankful to tell you that Kathryn is feeling SO MUCH BETTER and having a much easier time with treatment!!

Once we discovered a crucial change needed in her medication, we quickly got our Kathryn back, even though she has one more day of Ketamine left to go.

Kathryn’s pain has gone to ZERO which is expected on day 5 and 6.  We pray again that zero pain levels will hold after treatment and that she can have some normal life.

Last night, after we had adjusted meds and Kathryn could think more clearly, she got on Facebook without our knowing and discovered that her Uncle Paul passed away. Of course we hate that she found out that way! Her reactions were strong but normal and her mind and heart are now refocused on Judy, Chris, Thomas and all the family.

We love you guys!!

“But as for you, continue in what you have learned and have become convinced of, because you know those from whom you learned it, and how from infancy you have known the Holy Scriptures, which are able to make you wise for salvation through faith in Christ Jesus.” 2Timothy 3:14-15 NIV

Kathryn’s Uncle Paul and Aunt Judy with great uncle Msgr. Michael

This is such a difficult update to write. Our brother Paul died suddenly yesterday. His son Thomas wrote this:

“Yesterday February 13, 2014, my father left this world and is now with the almighty. He was the greatest father I could have asked for. I love him and miss him so much already. He was one of the kindest, smartest, musically gifted, and loving people I will ever know. He is so much a part of who I am and who I still will become. Being a teacher he not only touched his family’s lives but also hundreds of students. I know this great man will truly be missed by all who knew him. I love you Dad. Find peace with God. “

Our hearts are broken for Paul’s wife Judy and two sons, Chris and Thomas and for all of Paul’s loved ones who will miss him dearly. We are praying for our 97 year old uncle, Msgr. Chester Michael who lives in Charlottesville near Paul and Judy.

I cannot wrap my thoughts around my brother Paul not being alive on this earth anymore! My earliest memories are filled with waking up to Paul pouring out Beethoven on our piano at all hours, late night train trestles, and a house filled with bizarre cooking smells created by Paul let loose in the kitchen. Christmas and Thanksgiving without Paul’s piano and quiet presence (often hiding in the other room) cannot be imagined.

We are still with Kathryn in NC because we cannot stop this treatment in the middle. Kathryn cannot be told about her Uncle’s death while on this medicine nor can we let her see any disturbance in us; we have to stay very calm to help her stay calm and fight the horrible fears that plague the patient while on this drug.

This has been by far the hardest treatment that Kathryn has ever had to endure! We pray that she will not remember what she has gone through! It will be very hard for Dave, Joe and I to forget it.

I cannot describe the energy that we all, especially Kathryn, have had to muster to handle the side effects of this particular Ketamine treatment. As much as Kathryn needs the help it gives, we have come to loathe this drug!

Our Pastor and friend sent a much needed message from God’s word that expresses what we cannot.

Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.  Psalm 139 NIV

The last 30 hours of treatment have been a rough ride!

Docs decided to increase the levels of Ketamine as quickly as possible to try to get better pain relief for Kathryn. She is a tough trooper and we’re grateful that docs are willing, but this is a VERY TOUGH TREATMENT!

Snow here in NC is making travel between RM House and hospital difficult.

Love and safe traveling to all!!

He who takes refuge in the shelter of the Most High
will be safe in the shadow of the Almighty.
He will say to the Eternal, “My shelter, my mighty fortress,
my God, I place all my trust in You.”   THE VOICE Psalm 91:1-2

Kathryn in Forsyth Hospital getting treatment. YAY!!

An ICU room became available late last night. A PIC line was done at 5am so that treatment started around 6am. Despite the delays, we got good sleep and are doing well!

Kathryn’s pain is already inching down. She is at a 7 on a 1-10 scale right now. Her pain has been an 8+ during recent weeks.

Kathryn misses her kitten Melos, but she’s relaxed with no worries knowing that “Mimi” is in GREAT hands as she enjoys a visit with Aunt Anne   -THANK YOU AUNT ANNE!!!

We are thankful beyond anything words can express to be here and to have this treatment available for our Missy!!!!

Love and blessings to all!!!

Hi everyone! You have been on our hearts and in our prayers!

TODAY:

Kathryn needs your prayer! Kathryn had her wisdom teeth removed today because they were getting painful. CRPS often puts Kathryn between a rock and a hard place. Her body needed to avoid the pain of wisdom teeth becoming impacted but her body also needs to avoid the pain of surgery or injury. Her body has an extreme over abundance of pain receptors that want to register any pain she has as bigger and then to expand and multiply it. Please pray that her broken pain response system (CRPS) does not over-react to this mouth pain!

Also, on October 17th we will return to North Carolina for another one day Ketamine booster to address Kathryn’s increasing pain level. Please join us in praying for Kathryn that this treatment is successful in lowering her pain and that that pain relief lasts!

RECENTLY:

Kathryn’s pain has recently averaged a 6 or 7 on a 1-10 pain scale. It was averaging a 5 in August so as usual, we see an upwards trend.

Kathryn is still managing school well. Like others who are fighting illness, Kathryn’s energy is limited. Kathryn gives the majority of her energy to school because that is what is most important to her.

The ability to drive has provided many positive benefits for Kathryn’s pain management.  Driving herself to school gives her flexibility that relieves stress and pain by knowing that she can get home quickly if necessary.  She recently had to start using her handicapped parking accommodation due to pain. We are very glad for non-honors classes and know that we should have done this sooner. Teachers are aware of her CRPS and are very supportive.

When her pain was a 5 and below Kathryn could manage a few additional activities after school. With her pain recently averaging a 6 or 7 she is very tired after school. When her pain levels are 7 and up she misses more school. At pain levels of 8 and up learning and completing school work that requires higher cognitive skills becomes very difficult.

So we hope and pray that this wisdom teeth removal does not raise her pain and that the Ketamine booster on Oct 17 lowers it. Again, we ask for your prayers for the same.

With our love and God’s blessings to you all!