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Category Archives: Life with Masto

Great Mast Cell Beach Experiment Day 11

Day 11
My son is a high school senior this year and my daughter just graduated college. I’ve not been able to get out and do many shoots this past year so last night the kids and went out at sunset. The photo above is a picture of the back of my camera so the quality is not very good. I didn’t bring my computer with me so it all the images will have to stay on my memory cards until I get home. I am dying to get my hands on these! I am so excited I was able to capture my handsome son with this purple and orange creamsicle sunset!
While taking some pics in the water I got stung by a jelly fish. All three of us were pretty nervous as even normal people can react violently to jellies let alone someone who literally reacts to tap water. I did have a bit of a reaction. My throat swelled, I had a raised red welt where the little guy got me, nauseated, swollen upper lip, dizzy, etc. I was thankful my throat was much bigger to start with or it could have been a much bigger problem. We put vinegar on the welt and the redness got much better and the swelling went down but then I started reacting to the vinegar, that smell just sets me off! Anyway, we did not need to use the Epi pen or go to the ER and after a few hours felt much better. The next day I felt like I do most days back home. My throat is smaller than it has been the last couple of days, upper lip is numb and swollen, abdominal pain is back, I have a killer headache, and just feeling drained in general. I think I will feel better in a few days.
Today the kids fly home and my parents fly in. I’m really going to miss my kiddos! My daughter is my constant side kick and makes sure I don’t embarrass myself with any fashion faux pas. My son is beyond helpful and makes us laugh like a bazillion times a day. I have no idea what I’m going to do with out them! I’m looking forward to chilling on the beach with my parents, visiting, doing some photography, watching movies and M*A*S*H reruns. I am blessed with a great family!

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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

Great Mast Cell Beach Experiment Days 9 & 10

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

Great Mast Cell Beach Experiment Days 7 & 8

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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Christal
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