Mast Cell Beach Experiment Nearing the End

Newton’s Third Law states for every action there is an equal and opposite reaction, the same can be said of Mastocytosis and mast cell diseases. When you make a change to one area there is often an equal or bigger reaction in another area, since we are dealing with hypersensitive cells. Think of it as cause and effect. I picture myself standing in the middle of a giant teeter totter trying to balance both side…. while juggling. 😉

Ups and downs

Over the last several days I have been able to successfully reduce the dose of steroids, yippee! The effect has been low blood sugar, very low. I normally have low blood sugar but steroids can raise sugar. Over the last year my body has compensated but with the reduction in steroids I have really experience that equal and opposite reaction. While decreasing the steroids my blood sugar has routinely crashed into the low 50’s three or more hours before the next TPN dose is due. This has been problematic as I typically run 16 hours on TPN and only 8 hours off. Three hours really cuts into those 8 precious hours of untethered freedom. If a normal person was struggling with some low blood sugar they would eat a snack or drink some juice but I don’t have those options available to me. I tried to put some sugar water in my feeding tube and although that did work to raise my numbers for about an hour the reaction was I was very sick for 2 days. I know they make sugar pills but that is essentially the same thing as sugar in the tube. So my remaining option, directed previously by my doctors office, was to extend the amount of time that I am on TPN to 18 hours on. It was disappointing but over the next few days my body adjusted and I was able to reduce the running back down. Additionally, I was able to reduce the time even shorter than I had been able to do over the course of the last year. I’m currently running 14.5 hours a day and with the direction of my doctor I hope to be able to get to 12 hours on and 12 hours off.

Nicole left today and Lee flies in tomorrow. We will go back home in a few days. Once he is in town I will try some formula again. The time has passed much quicker than I thought it would but I miss my family tremendously. They have all worked very hard completing tasks that can’t be done when I am around to prepare our home to put be on the market. I have pretty new floors in about half my house (with help from Steve Boxberger) The floors are formaldehyde free, low VOC, a green product and look beautiful. My family has also restained the window ledges, painted baseboards, held a garage sale (with a lot of help from Kayla Thompson, Cyndi Lackey, Twyla Roe, Caryn Adams, Lindsey Foster, and Nita Smith) and completed a host of other projects. They are looking forward to some well needed rest.

One Year Anniversary of Mastocytosis Relapse

As much as I miss my family I am also nervous to return. The mast cell patients who live in the area have really been struggling this fall flare season. It has now been a year ago that I experienced anaphylaxis that sent me to the ER after a photo shoot, life has not been the same since. That is not an anniversary I want to celebrate. I can think of a least six nights over the past year that I honestly did not expect to make it to see the sunrise. Memories like these are still too fresh. The suffering has been real and I don’t want to suffer like that again especially after feeling so much better.  I know how many of you love the music videos I have posted in the past. This one sums up my past year, it is at the end of the post

Redemption

The problems have been ever present but so has my Savior and Redeemer. Since being here at the beach I have made progress in the following areas

• I don’t have to wear a mask outside
• Throat, lip, and tongue swelling is gone
• No numbness or tingling
• No flushing or redness- except a mild sunburn:-)
• No night sweats
• Hand and feet swelling is gone
• I’ve reduced my steroids
• Face and abdominal swelling is reduced- probably from the reduced steroids
• I’ve shortened my TPN running time – meaning my pancreas is regulating insulin better
• No nausea or headaches
• Abdominal and back pain greatly reduced
• Energy is increased to a normal level
• I am able to exercise every day and regained some muscle tone
• Food is smelling good instead of making me want to gag
• No itching or hives

I have to go home to get more TPN, without it I have no food. We are praying for the best and preparing for the worse. This month has given me a glimpse of how my condition will likely improve after our move. There is no cure for Mastocytosis but God has shown us a place that will help me improve long term, LOVE that guy!.

At the moment I have all I need—and more! …. And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus. Now all glory to God our Father forever and ever! Amen.Phillipians 4:18-20

Hope and healing,

Christal

Stephen Curtis Chapman Long Way Home