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beach experiment

Mast Cell Beach Experience Day 17 Storms

Storms of Life

Right before we arrived here in Florida the remnants of a big tropical storm pounded the shore leaving behind broken shells and an uneven shoreline. The evidence that something very violent happened here was evident. Over the past few days we have had several big storms blow in including a really bad one overnight. I know it was bad because the sound woke me up. That is not unusual In Oklahoma but here the Florida the condo I’m staying in has big heavy hurricane windows and doors and the building is solid concrete. It can be storming like mad outside with ten feet of visibility but you won’t hear a thing inside. So for this storm to be so bad that it woke all three of us from a dead sleep, it had to be quite a storm. The next day it continued to rain all day and into nightfall.

Today you can say it is the calm after the storm. It was nice to wake to today and see the sun poke its head up after so many days of rainy and stormy weather. The water is a beautiful aqua and so clear I can see through the waves. The shore line has been smoothed. It’s a nice gradual walk into the water, and all the broken bits of shell have been whisked away leaving only soft white sand under the surf.

This reminds me of our lives and the trial we go through. Sometimes the storms in our lives produce brokenness. The evidence can be seen all around us. If the storm continues for an extended period of time or if it is particularly strong or devastating there may be no area of our lives that goes untouched. It may seem overwhelming. As the battle rages on, it appears as though troubles will never end. Then there are times when wake to see the storm has purify or prune us of the unnecessary junk in our lives. What seems painful in the heat of the battle actually helps to remove the obstacles between us and living a healthy, balanced, and purpose filled life. What is left behind is a simplified peace, a new normal.

Genesis tells us we live in a broken fallen world. There will be troubles and trials, there is no if about it. Jesus was the only perfect man and he had more than his share of troubles. If Jesus experienced pain and suffering in this world, why are we surprised when we do? This is not Heaven. Jesus tells us in John 14:30 that this world is ruled by Satan. BUT he does not have the last word. We have a Redeemer who uses everything, if we let Him. The storms of this life will not have the last word. Hold on tight to The Rock and be encouraged by theses words:

There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

Romans 5:3-5The Message (MSG)

Hope and healing,

 

Christal

 

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal

Great Mast Cell Beach Experiment Day 16

Medication Decrease Day

Mast cell medication

In the last year, I have literally been on more medication than food. The most helpful and more problematic medicine has been prednisone, a steroid. Long term steroid use can be very hard on your body causing a lot of health complication, however sometimes it is unavoidable. People with a mast cell disease and many other chronic or autoimmune diseases, rely on these meds daily. In my case the steroids kept the swelling in my throat, lips, and tongue at a life saving level. Even with medication the swelling never completely went away. Being at the beach has significantly helped with the swelling, it is the best it has been in over a year, although still not completely normal. Today we start to taper down. This is no easy task as my body has quit making its own steroids. We are prayerful the adrenal glands will turn back on. The longer a person is on prednisone the more slowly the taper need so to be to avoid other serious problems. I’ll keep you posted on how it’s going. This day is a big day for our family. Anyone who has been on this drug knows how it is a blessing and a curse. It will be a joyous day when. It is no longer needed.

Philippians 4:19 ESV

And my God will supply every need of yours according to his riches in glory in Christ Jesus.

Hope and healing,

Christal

 

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal

Beach Experiment Day 14 Genetic Testing

Not much to share beach wise today, it was rainy and gray. We spent time on the balcony and we hung out around the condo just taking it easy.

Genetic testing

I thought I would share something that I did before I left. Over the last several months the idea of genetic testing has repeatedly come up seemingly everywhere I go; in conversations with several unrelated people, online, and with various medical people I know. You can get extremely detailed information. By simply ordering a kit, spitting in a tube and mailing off to the lab you will receive raw data about your DNA and a variety of family ancestry information. This data can then be run through various apps, some free some paid, to receive an interpretation of the raw data for things like diseases, supplements needed, drug metabolism, how well (or not so well) some of your body processes are working, and all sorts of mutations. Since it is your DNA you only need to do the testing once in your lifetime.

If you or your doctor are looking for something specific, the blood testing through their office will be a better fit for you. If you want to see a host of information from all those areas I spoke of previously, then a kit like this may be for you. I will do another post in the future about the results, but I will say, I found the them to be very accurate.

23 and Me

The kit I uses was for a company called 23 and me. The kit is $99 but if you have been diagnosed with Mastocytosis or another Myeloproliferative disorder and agree to let them add your DNA to a data base to help find drug treatments or a cure, it is free. The first thing you do is go online make a free account and order your kit. You fill out some questions online and then wait for a few days. You will get an email when your kit is on its way to you.

This is what it looks like when it arrives in the mail.

Don’t forget to go online and register the kit to your specific account or the sample will not be processed.
The instructions are very good.
The kit contains everything you need.
You don’t have to fill up the whole tube, just the amount between the lines. When you are done, snap the lid closed. Place the tube in the plastic bag and seal the top closed. Box it back up and pop it in the mail.
The kit comes with prepaid postage already applied.

Now comes the hard part, waiting for the test results. In about three weeks you will know more about yourself that you ever thought possible.

To order your kit you can go to www.23andme.com

Or to participate in the Myelopoliferative Neoplasms Reasearch Inititive and receive a free kit go to

https://www.23andme.com/mpn/

Hope and healing,

Christal

 

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
M o r e   i n f o