Allergic to the World

Mastocytosis Flare Recovery Month 9 Day 19

Down Regulating

Mastocytosis is a disease where your body makes too many immune cells called mast cells. Most people  think of disease as a weakened immune system but in this case people have to high of an immune response. Your body thinks everyday benign things are dangerous invaders. Mast cells release a bunch of chemicals and send out the message for reinforcements signaling the body to make even more cells. It is a real war zone on a cellular level. This is a great thing when faced with something like snake bite venom but for people with a mast cell disease too much of a good thing is very bad. Down regulating is a fancy term used by mast cell specialist that simply means the process of allowing your immune system to calm down by avoiding any triggers for a long period of time.  Literally, you are decreasing the number of cells.  Often this process takes many months. This week I am down regulating by just hanging out at the various area beaches. Usually down regulating occurs bed bound or housebound, and basically living in a bubble. I feel so very blessed! Not only am I in a beautiful place but the symptoms are going away so quickly.  Thank you God for this amazing gift!

Day 4 Beach Side

Today we decided to head to Seaside on 30-A. This is such a cute little town. The town square is lined with beautiful little shops and a row of vintage air streams that have been converted to food trucks. We stopped at the famous Meltdown, which reportedly has the best grilled cheese of your life. Brittany can eat some wheat but not much so a grilled cheese was out of the question. Fortunately, we discovered this little gem the day before while exploring 30-A and were prepared with some gluten free bread. They did in fact make her the best grilled cheese sandwich of her life.

   After lunch it was off to the visit some of the unique shops and boutiques before heading to the beach where picturesque cottages line the bluffs overlooking the gulf.

We packed up and went to explore Panama City and stopped off at the quaint little town of Rosemary. It looked a little like a movie set.

We took the afternoon at a leisurely pace and stopped for an impromptu photo shoot. I didn’t bring my “big” camera with me but it is pretty amazing what you can do with an iPhone these days.

Update

• Swelling of the face going down slightly
  
• Increased energy
• Very little pain
• Feeling better overall
• Effects of recent reactions slowly resolving
• Loving not wearing a mask outside
• Spending all day outside… not since May vacation on the beach
• Brain fog lifting
• Redness in face almost all gone

Mastocytosis Flare Recovery Month 9 Day 18

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.

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

Mastocytosis Flare Recovery Month 9 Day 17

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