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Why the beach?

Mastocytosis Flare Recovery Month 9 Day 18

Why the beach

Day 3 Beach Side

Today started off raining so we plan B’d it. We drove around getting the lay of the land.We traveled along the famous 30-A, a highway that connects 16 different beach side communities. We picked a few of our favorites to go back and visit later in the week. Afterwards, we checked out the place I will be staying this fall, did some shelling, and hung out on the beach.

Why the beach
As I was taking the top photo, this guy walked out from the grass and scared me to death. He was about 8 inches wide and was only about 12″ from me.

The rain rolled back in for the evening so Brit and I went back to the condo and watched some TV and played some games. It was a very relaxing night.

An Unexpected Surprise

Most of you know Brittany has a mast cell disease too. Her condition is vastly different from mine as she was diagnosed and treated with in a year of symptom onset while it took more than 20 years for me to be diagnosed. Obviously she lives in a mast cell friendly environment, she modifies her diet during the spring and fall flares and avoids chemicals such as preservatives, dyes, etc year round. Back in February she caught a bug of some sort and had a huge lymph node on the side of her throat. I mean huge, like a golf ball. She woke up this morning to find it was completely flat. It was a little sore but it was flat. As the day went on the soreness went away. I know mast cells often gather in lymph nodes and I know they cause inflammation. Regardless of why, I’m glad she is feeling better here as well.

Why the beach?

Several other mast cell patients have told me how much better they feel at the beach. I’m not sure why but I never put two and two together thinking this place would probably make her feel better as well. So what is it about the beach that seems to be helpful for so many? I’ve come up with a few theories but really that is all they are. I have done better in Florida, Hawaii, Southern California, & Texas Gulf Coast.

  • Sand = less grass
  • Palm trees vs. cedar, cottonwood, and other heavy pollinating trees
  • Fresh ocean air blows away all sorts of allergens
  • More Consistent temps. Here the hottest average month is July with highs in the 90’s, the coolest month is January with highs in the 70’s. Oklahoma highs in the summer typically reach over 100, some years in the 110’s winter highs may be in the 20’s or less. The swing in temperature is very challenging.
  • Less agricultural use of chemicals
  • More rain helps keep the air clear

Update

  • Feeling better, not great yet but better
  • Effects of recent reactions slowly resolving
  • Loving not wearing a mask outside!

Christal

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Plan B

Mastocytosis Flare Recovery Month 9 Day 17

Plan B

Second Day Beach Side

  • Brain fog is better- I am able to recall information better and have more clarity.
  • Tolerated the extra exercise of schlepping beach stuff- something my man usually does for me 🙂
  • Went down on my steroids this morning.
  • Tried formula tonight… Sadly, it did not go well. My throat started swelling and became smaller than it has in a long time. I am disappointed but it was probably too much too soon. It wasn’t until day four I was really feeling well and we have been here less than 48 hrs.

Plan B

Once you have an allergic reaction your body becomes flooded with over 200 chemicals. All those chemicals floating around in your body makes it much easier to have another reaction in the days to come. It takes time for your body to get rid of all that stuff. Meanwhile, it is very important to avoid any potential triggers during this time. I won’t be trying any more formula while I am here. I’m going to focus on getting some vitamin sea and letting my body heal.

Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails. Proverbs 19:21

Control

One thing this disease has taught me is to be very flexible. Control is something most people like to have, myself included. We want to choose what happens to us, where we will go and what we will do. We choose where we will live, what we will wear, what we will eat, and who we hang out with. When faced with a crisis of health, finance, etc. those choices become a luxury that may not be obtainable. Having an incurable chronic disease takes away a lot of choices.

I can not choose for myself…

  • what I eat
  • how my body responds
  • where I go
  • what I am able to do
  • If I am able to work
  • When I will sleep

I can’t:

  • Clean my own house
  • Wear perfume or cosmetics
  • get my nails done
  • Go out to lunch with girlfriends
  • Pet my dog
  • Go out on a date with my husband

I don’t say those things to complain. My point is that much of what we see as control is an illusion. It is an illusion because it can be taken away in one brief moment. The loss of a job, someone hurting us, a car accident, a life altering diagnosis, or the death of a loved one for example. In Oklahoma, our community is all too familiar with tornadoes. When these things happen to us it rocks our world. The wake of destruction that is left behind can be overwhelming. There are very few things we can truly control.

The Secret

Want to know a secret to happiness that is not dependent on your situation? It’s about getting down to the basics and not getting distracted by everything else.

  • I can control how I respond to the situations this broken world lays at my feet.
  • I can control where I put my faith and trust.
  • I can control where I spend eternity.

Joshua 24 says: “If it is disagreeable in your sight to serve the LORD, choose for yourselves today whom you will serve: whether the gods which your fathers served which were beyond the River, or the gods of the Amorites in whose land you are living; but as for me and my house, we will serve the LORD”

I have been given a gift, we all have. The gift is life. Life with my family and an opportunity to serve the LORD.  I am very thankful for the gift everyday! Tenaciously hold on to the things you can truly control and be flexible about everything else. Then you will find happiness and joy that is not dependent on your situation.

 

Christal

 

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This is where the healing begins

Mastocytosis Flare Recovery Month 9 Day 16

Road Trip

After two days on the road, we finally arrived in Florida. I don’t like sitting for so long but really enjoy seeing new and different things along the way. I find America is pretty interesting and it’s people are very diverse. One of the best parts of a road trip for me are all the strange and funny little things you see along the way. This was a Dallas restroom that had an honest to goodness old-fashioned metal prison door on it- yikes! I knew no one would believe me so…

You ask yourself “Did she really take a photo of a bathroom door? ” Yep, that just happened! When I sent this image to my hubbie he said they just didn’t want anyone to steal the TP- lol!

Progress

I have been struggling with this latest round of severe allergic relations since fall 2013. On a recent family vacation to the beach nearly ally my symptoms went away. In May it took about 4 days to really get the full effect of feeling better. You can read about that here if you missed the original post. I have been here about 24 hours and I have started to see some improvement.

  • I am able to go outside without wearing a mask. Other than our beach trip in May it has been months since I could do that. I tried on the road yesterday in both Louisiana and Mississippi and it was no bueño.
  • I have been unable to wear any make up of any kind, including lip balm, for more than nine months. Today, I was able to use a tiny amount of coconut oil. My lips were very happy!
  • Sunscreen has been a huge problem for many years. Today I was able to use some California a Baby Super Sensitive stick without being sick.
  • We were in town just a few hours when the girls mentioned how much better my color was. What do you think?
Healing begins 1
This was in the beginning of May
Healing begins 2This was yesterday
Healing begins 3 This was today
Having only arrived here last night, I think that is a lot of progress. I am excited to see what happens this week and also this fall.

On the agenda

In the days ahead I hope to reintroduce formula, decrease the steroids, and get a little vitamin sea. It will take weeks or possibly months to increase the formula enough to get off the PICC line. Recently, I have been very hungry. Last go round, the hunger returned  just as couple of months before I was able to start trying new foods. I pray that is true this time!

Healing begins

Many of you have told me you love when I post a song or lyrics. In our family we joke about our Soundtrack of Life because it always seems there is a song or verse that fits the situation perfectly. I have been thinking of this chorus all day, it’s Healing Begins by Tenth Avenue North.

This is where the healing begins, oh

This is where the healing starts

When you come to where you’re broken within

The light meets the dark, the light meets the dark

Hope and joy to you,

Christal

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