brain and pain, brain pain, Causalgia, children and pain, Chronic Pain, chronic pain treatment, Complex Regional Pain Syndrome, CRPS, crpskidz, depression, fibromyalgia, Living with CRPS, mitochondrial DNA, Pain, Reflexive Sympathetic Dystrophy, Reflexive Sympathetic Dystrophy Syndrome, Research, RSD, RSDS, scholarship, surgery, Treatment, video contest, widespread pain
I was reminiscing over what the summer brought us and wanted to share some of our blessings. Home school is back in session and his request for the summer was just minimal Doctor visits and relaxation. In writing about our summer, I am reminded of the song “Count Your Blessings”
“When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.”
- Griffin has had a wonderful close friend spend the night quite a few times and it has been a great distraction. I love hearing their laughter! It’s difficult for us to leave the house so we really have enjoyed the company.
- He was able to spend some time on his Xbox and chat with friends while they played games. Most of the time, the noise and the pain keeps him off so this is always a blessing when he has days well enough to play.
- He was invited to a birthday party at Pizza Hut where they migrated to Palace Point for games a movie and bowling. He wasn’t able to bowl but he enjoyed the time with friends.
- We spent an afternoon at the zoo with his cousins and aunts and we learned the value of pacing ourselves.
- He enjoyed the extra time this summer, playing with Sparky, Bleu and Pickles.
- Griffin loves to eat so he picked out his favorite foods when we went to buy groceries. We’ve been focusing on healthier eating habits and even tried juicing this summer!
- He reached another peak in his growth this summer and has reached 6’5″ with a size 16 foot!
“Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.”
- We had visits and calls from some wonderful church, family and friends over the summer. My Pastor and our church body have been there for me when I needed strength; some kept my mind active with websites and research; long-time friends visited the church this summer (even though we couldn’t attend); Griffin and I received some wonderful cards in the mail; their love offerings helped us keep up with some medical expenses; and, I even received wonderful information on nutrition! Thanks, Concord United Methodist!
- It rained so much this summer that we actually grew bananas on our banana tree and I turned the “koi pond attempt” into a nice arrangement for the babies that keep sprouting up. It’s still a work in progress.
- Keith visited for the day and we had a cook out and Griffin actually rode on the boat, for the first and only time in two years, taking his pets with him to play on the islands and Keith fixed his laptop.
- His aunts and grandpa visited and we enjoyed a nice day together with their homemade fried chicken, corn on the cob with Griffin’s favorite beans and crescent rolls.
“Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.”
- Great friends have kept our lawn trimmed this summer.
- Emily brought over her home-made potato salad!
- Friends brought us dishes of wonderful meals.
- A neighbor offered a spare wheelchair should we need it. Griffin is still restricted from too much weight-bearing for long amounts of time.
- His cousins spent Fourth of July weekend with us. They got the boat running and fixed up several things around the house that have been neglected over the past couple of years. Their visit was a huge blessing and we loved having them over!
- I am thankful for each and every one of you who have kept us in your prayers and kept in touch. That means the world to us!
- We’ve had many nights this summer of no sleep. The pain will finally induce enough rest to maintain. These nights and days have given us time to connect and to talk long and hard about how God doesn’t give us more than we can handle and how important our faith and hope are for recovery. His CRPS is in full bloom and it feels like lava running through every vein in his body.
“When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold;
Count your many blessings. Wealth can never buy
Your reward in heaven, nor your home on high.”
- We eliminated a bunch of items during our yard sale, raised some funds for medical expenses and were able to donate many items. We are focusing on eliminating the unnecessary clutter and direct our attention on the important things.
- We successfully eliminated two bills this summer, cable and the home phone.
- Griffin completed two YouTube videos for a non-profit organization for kids! Why Did This Happen To Me And How I Got RSD and There Is A Bully In The Jungle and has several more in the works thanks to KDT! Plus, he earned credit for community service summer assignment and many thanks of gratitude from the author, who contacted him through one of his on-line videos for CRPS Awareness, Pamela J. Tomlinson.
- We’ve met some wonderful new people in the process of promoting awareness for CRPS and we have had several wonderful friends that have been helping keep us updated on new trials and treatments.
- We received medical contributions from several more friends and acquaintances putting us up to 64% of our goal!
- Griffin’s story “A Son Like Griffin” was featured in the Sussy Project. We both received some encouraging emails from the promoters of this Project and they are awesome! They even sent Griffin an award of Microsoft Points to put an extra smile on his face.
- Thanks for Patrick Walters, at Triangle Variety Radio, Griffin’s story was featured on Rogers Weekly news
- His website was featured in Definitive Library for Reflexive Sympathetic Dystrophy (CRPS) Chronic Pain and Similar Conditions, to help promote CRPS Awareness for Kids.
- He entered a summer scholarship video essay on “The One Thing That Changed My Life“. He didn’t win but the distraction of putting together the video was a good for him and he is grateful for the wonderful votes he received.
“So, amid the conflict whether great or small,
Do not be disheartened, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.”
- Griffin may qualify for a new stem cell injection to rebuild the cartilage in his knee. We’re waiting on more tests he will have to do in order to determine the extent of the knee damage. This procedure is less invasive than knee replacement and more suitable for his age and disease. Here is another video explaining the process. We are so thankful for this new option and for God giving us the patience to wait for it. The X-Ray results showed left leg bone density reduction and he needs to strengthen his hip muscles.
- We both have a multi-disciplinary team set up to help us conquer our pain. This involves the Primary Care Doctors, Rheumatologist, Orthopedic Surgeon, Psychiatrist, Counselor, Chiropractor, Water Therapist, Podiatrist, a Urologist, and, Griffin’s Pain Specialist is working with him on the coping skills and coordinating his care through The Children’s Hospital at Duke for occupational therapy and physical therapy and overcoming sensory issues. There is research underway to examining “the mitochondrial DNA link on the maternal side of families” which links Fibromyalgia and CRPS. The two diseases we suffer from.
- TCAPP (The Coalition for Pediatric Pain) organized the first “Think Tank” weekend involving many Doctors (including one of Griffin’s Doctors from Boston Children’s Hospital) to brainstorm ideas on CRPS treatment and cures. One of the Founders has also provided us with several encouraging emails to which I am very grateful.
- Griffin’s understanding more about why the other kids with CRPS are choosing the Ketamine 5-10 day Infusion Therapy and has had two friends already try this out. (This has just recently been offered to teens with CRPS)
- Another blessing has been the positive results patients have been receiving through Calmare Scrambler Therapy. There are a few Research Centers that specialize in this option for pain control. There is a Doctor in New Jersey and specializes in CRPS patient treatment through this therapy.
This summer has been spent praying for the right decisions and the “moments of normalcy” in our days are our blessings. We are so thankful for each of them because they distract our minds from pain. I’ve spent a lot of the summer putting Griffin’s curriculum together. It’s a blessing to be able to home school and this year Griffin is taking Chemistry, Geometry, World History, World Literature, Religion and Fine Arts. Pray for a successful and enjoyable new school year!
The biggest lesson we learned this summer is that you can meet many doctors, professionals and people and the one’s that make you feel good are the ones you need to treasure. It is very hard to live with chronic pain and any toxic communication can set your recovery back by months. Please pray that we “learn the art of being wise and the art of knowing what to overlook”. Please pray for our multi-disciplinary team and that we can maintain the physical stamina required to keep up with the goals, that our vehicle continues to provide reliable transportation, for the financial ability to budget for the gas and co-pays, for patience and motivation, and, for safety in our travels.
Dear Lord, thank you for a wonderful summer filled with many blessings and memories. We don’t always want to spend our money on treatments and we pray for a cure very soon. I am always so concerned about details and so focused on finding the underlying causes to things. I don’t like to move forward without answers. I know I analyze everything too much. Please help me with this. I know that you have a purpose for everything. Please let me understand and trust in you more. Please let me learn to listen to you and to understand the reason behind this dreadful disease. I don’t want my son to go without restful sleep, I don’t want him to be in pain 24/7, I don’t want him to doubt his purpose in life. I want him to have quality in life during his teenage years and throughout his adulthood. Lord, I know that you are here for us and that everyday you send us a new blessing. Please continue to stay with us because we cannot do this without you! I love you Lord. I know I don’t always have the same plans as you, but, I trust in you and need you. Amen.