page contents
Masthead header

Category Archives: Life with Masto

Miramar Beach

Mastocytosis Flare Recovery Month 9 Day 20

Miramar beach

 

Today we continued our quest for the best beach in the Florida panhandle at Miramar beach. This was defiantly one of our favorites. White sugar sand, clear water, and the crowds were not too bad. The color of the water was more like Hawaii than some of the surrounding area. It was such a relaxing day.

Miramar beach
Miramar beach

Britt had a sunset cruise so in the afternoon we went back to the condo. I walked (yep, getting more exercise) to Seagrove beach to catch the sunset and listen to the surf. It was beautiful!

Seagrove beach

Update

  • Getting more exercise
  • Energy level is way up from the first day, it’s almost normal 🙂 I was worried after such a long day yesterday I might be dragging today but thankfully no.
  • Feeling much better
  • Effects of recent reactions resolving
  • Color looking almost normal
  • Loving not wearing a mask outside!
  • Thrilled to be able to spend time doing outdoor photography. I have really missed it!!!

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17 NIV

 Blessings,

Christal

 

Did you enjoy this post? Have future posts delivered via email

* indicates required



Email Format


Christal

Beachside Down Regulating

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.

   Down regulatingAfter 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.
This is a dress made of bark and wood. Doesn’t seem like it would be very comfortable 🙂

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.

We made it to the Panama City Pier in enough time to see the sunset.
After the sun went down we made our way to Miracle Strip at Pier Park, a vintage style amusement park. We are not much for rides but we had a lot of fun playing with night photography and long exposures.

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

Did you enjoy this post? Have future posts delivered via email

* indicates required



Email Format


Christal

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

Did you enjoy this post? Have future posts delivered via email

* indicates required



Email Format


Christal
M o r e   i n f o