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beach experiment

Great Mast Cell Beach Experiment Days 9 & 10

09.16.14

Day 9

This morning I woke up and it was as if a light switch had been flipped. I had a clear mind and lots of energy but my throat was very painful so I wondered if it was badly swollen . When I looked, not only was the swelling down significantly but I could move and flex the back of my throat and tonsils. As a singer this is normally a pretty easy thing to do but something I have not been able to do for almost a year. It has been so swollen it was as if the whole area was paralyzed. I just chalked up the sore throat to muscle spazems and by mid day the pain was gone. Praise The Lord!

Day 10

Woke up this morning at 5:30. Although I am more of a night owl than a morning person, this has been the trend here in Florida. I was out on the balcony watching the sunrise, thinking about how much better I am finally feeling, concerned about what it’s going to be like when I go back home, and doing devotions. This was one of today’s verses from Jesus Calling: “I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you. ” Genesis 28:15

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. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: beach experiment | Life with Masto | relapse

Great Mast Cell Beach Experiment Days 7 & 8

09.14.14

Day 7

I’m officially 1/4 of the way done with the experiment. I have been outside every day with out a mask and it feels great. I no swelling in my feet and less swelling in my hands than normal. I got a little too much sun on my cheeks so hard to tell if my redness is better. I have no lip swelling and all numbness is gone too so that is wonderful. I still have some brain fog and my energy is not quite where it was when I came in July. I have been really sick the whole month of August, pretty much since leaving Florida last time. It could be that I started off significantly sicker prior to coming this time so it is just taking me longer to turn around. I also started off more tired than in July. It takes so much more energy to prepare for being gone a month than it does a week. I’ve just been napping, chilling out, and basically doing a whole lot of nothing. I spend a lot of time on the balcony. When I’m hooked up to my TPN I’m usually in the condo or on the balcony. When it’s time to disconnect we get ready run errands or go to the beach. I sit in the shade with SPF 50 on for a couple of hours and then shower off or take a nap. I am surprised my throat swelling is about the same but I had some reactions the first few nights to the neighbor smoking. I will just keep doing what I know has worked in the past and see what happens.

Today we took our aunt and cousin into Destin to Crystal Beach for a day of fun in the sun. It was beautiful. The water was perfectly clear and just the right temperature. Hanging out in the tubes are always a big hit for floating on the waves. The kids love to snorkel and look for shells and fish. Brad thought he would like to learn skim boarding while he is here. He is getting pretty good and it looks like fun! We finished up the day at Shake’s frozen custard and then everyone indulged me with my hunt for the perfect soft boyfriend cardigan sweater. I was victorious with gray and plum 🙂

Debbie took this beautiful sunset photo while they were here.

Day 8

Today we took our aunt and cousin to the airport for their trip home. It was good having them here. The five of us did a lot of laughing and you know what they say about laughter.

It has been kind of rainy here so the kids and I ran some errands while we were out. Brittany took me to a cute little specialty store they found called Emerald Coast Olive Oil, it is just different olive oils and balsamic vinegars. According to one of The Mastocytosis Society’s YouTube videos, Olive oil has mast cell stabilizing properties. Obviously I’m not able to try any yet but it will be good for the kids with their conditions and for Lee too. Just an FYI…. vinegar, as well as any aged product, are usually activators. I heard from many of you about how helpful the links have been so here is a link to the store. You can order online from them. http://www.emeraldcoastoliveoil.com/

After our little shopping trip, we just hung out at the condo watching the storms. The colors in the water are so vibrant under the cloudy skies it almost hurts your eyes.

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. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
Filed in: beach experiment | Life with Masto | relapse

The Great Mast Cell Beach Experiment

09.08.14

Mastocytosis flare recovery 11 months 11 days

Mast Cell Beach Experiment

To the Beach

Well, I am officially in Florida for my nearly month long beach trip. I know many of you are cursing my name right now at the thought of that but truely it is for medical reasons. My doctor is hopeful by skipping the dreaded fall flare season back home and recovering at a place that has a history of making my symptoms go away, I will be a new woman. His hope is that I will be able to attempt to eat when I get home. I think that might be a stretch. I will be here for the one year anniversary of when it all came crashing down again. I have not used my GI track and jumping from TPN to food would mean skipping all enteral formula, which is supposedly less reactive. I trust him though and he is usually right so I will do what I am told and spend the next several weeks chilling by the beach trying to let my mast cells calm down.

My family loaded up the van and we began the two day trip to the coast. I’ve never been big on road trips but I am starting to see the charm. Being a military family, It used to be that road trips were for going home to see family for the holidays. Packing up the kids and all the needed equipment, clothes, snacks, and entertainment was exhausting. We needed a vacation just to recover from our vacation. Anyone been there??? Now It help the kids are not babies and able to pack and entertain themselves. It’s nice having everyone all together making memories. I will really miss them when they go home. On the way we encountered a beautiful full rainbow right at sunset. I felt like it was God’s promise to me that everything was going to work out fine.

Mast Cell Beach Experiment

Packing

So what does packing for a trip of that length look like? The logistics have taken me a little while to figure out. I’ve never been gone that long before or known anyone who has. I found a great post on the internet for a capsule wardrobe. It’s a mix and match kind of thing where you take 16 pieces of clothing and can rotate them to make 40 outfits. I knew my condo had a washer and dryer so I was game but I had to take a couple of extra pieces… just in case.

Mast Cell Beach Experiment

I ended up packing 1 large suitcase, 1/2 with clothing, 1/2 with things I knew I would want to make the condo seem more like home. I took soft sheets, towles, and that sort of thing. I had a small suitcase for things like my hair dryer, toiletries for a month, beach towel, my amazing little shower water filter, more on that tomorrow, and those sort of odd shaped things. I packed my pillows in a space bag to keep them clean and to take up less room. I took my air purifier, I never travel with out it these days, it’s a life saver. Of course the family needed to take some luggage as well. However, the things that took up the most room in my van were all the cases of TPN and medical supplies. Lee came home from my home health company where he picked up 8 coolers plus a huge box of all the accompanying supplies I require. It was quite a sight.

Mast Cell Beach Experiment

Beautiful Florida

We made the trip in two days and finally arrived at my girlfriend’s house. Beautiful place! Anyone wanting to stay on the beach near Destin, you have to check it out. This was the view from my bed. www.vrbo.com/474240 or www.youaremysunshinedstin.com

Mast Cell Beach Experiment

Blessings

We had the best time just visiting, catching up, and watching our families meet. Cheryl and I meet through work probably 12+ years ago. We used to travel together and work on various projects together and then became great friends. Although we have never lived in the same state, we used to exercise every morning together. We would get up at 6am, or crack of black as we like to call it, and walk on our treadmills together while we talked on the phone. This trip we walked on the stunning Miramar beach together. We may live in a broken world with things like disease but God is in the business of redemption. He specializes in restoring and healing, God is good!

Whatever is good and perfect comes down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow. James 1:17 New Living Translation

 

Christal

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Filed in: beach experiment | Life with Masto | PICC Line | relapse | Road trip | TPN
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