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Great Mast Cell Beach Experiment Day 16

09.25.14

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
Filed in: beach experiment | Life with Masto | relapse
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Beach Experiment Day 14 Genetic Testing

09.23.14

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
Filed in: beach experiment | genetic testing | Mast Cell 101
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Mast Cell Beach Experiment Day 13 Photography

09.21.14
Mast cell beach experiment

Fun

Today was photography day, yay! My dad just got a new camera and we had fun tinkering around with it. God provided many opportunities for us to capture His creation. We spend hours out on the balcony in the morning. We saw a large pod of dolphins. They were very active and a few of the younger dolphins would jump out of the water twisting and flipping. They put on quite a show. In the late afternoon a big lightning storm blew in and my dad got an amazing shot of lightning striking the ocean. My mom was not left out of the action, she displayed some mad IPhonography skills with these sunset shots. It’s good to have them here, we had a fun day.
Mast cell beach experiment

Not so much fun

Meanwhile, back at home, my hubby and kiddos  have not has such a relaxing day. They have been working like crazy on many projects that can not be done while I am around due to smells, dust, or other triggers.  They are working to get our house ready to put on the market. Some of the projects include staining the window ledges, spackling the walls, touching up the paint in most of the house, reprinting Brittany’s room,  removing more carpet, repairing and staining the fence, putting down wood floors, holding a garage sale, oh yeah and going to work and school. Please pray for them as it is hard enough having momma gone but especially when I would normally coordinate and organize all things moving. It will all work out and be sooo worth it after we move and they have a wife and momma who is able to do more than just be bed or house bound.  I am doing so well at the beach we just can’t wait to see the long term effects.

Romans 8:26-28The Message (MSG)

Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.

 

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 personal experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: beach experiment
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