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Crystal Beach

07.22.14
Day 6 Crystal Beach in Destin
Crystal beach

Of course with a name like that, we had to spend our last day sea side at Crystal Beach. What started off as a quite afternoon by the shore soon broke into mayhem with one word “shark”. In an instant, sleepy beach goers jumped to their feet, parents scooped their children out of the water and ran for the safety of the beach. All eyes were on the ocean tying to get a glimpse of the famous dorsal fin. People huddled together sharing information and pointing to vague areas of azure blue water. It was something straight out of a movie script. In true movie fashion there two guys who seemed oblivious to the dozens of people yelling at them to get out of the water. The dark shadow under the water twisted and turned as it made its way toward the men. It was as if everything was happening in slow motion. The men in waist deep water finally noticed the crowds on shore facing them. As one of the men strained to hear the chanting crowd, the look on his face went from confusion to sheer terror. The dark figure was headed right for him. At the last moment the shark turned slightly toward the shore and the man attempted to grab its tail. Unable to be captured, the 2-3 foot creature continued its path along the shore. It was an entertaining way to end our week at the beach.

Girlfriends

One thing I was really glad we were able to do was to see one of my very favorite girlfriends, Cheryl, and her daughter Anna. It was a highlight of the trip! Are those tiny palm trees cute, or what?

Here I am wearing my TPN backpack.

Update

  • Face swelling significantly better- barely any divots under eyes but that is probably from the steroids
  • No lip swelling or numbness
  • No swelling in eye lids, hands or ankles
  • No abdominal pain
  • No joint pain
  • No headaches
  • No nausea
  • Hair has stopped falling out
  • Tried consealer make up- no itching burning or swelling. Mineral Fusion available at Sprouts
  • Tried a new Lip balm- no reaction-yippee! Pacifica Natural at Target
  • Going for broke… Tried a new sunscreen California Baby Super Sensitive – no reaction but I only did one arm to start with. Target again
  • Able to regulate body temp better. Had to turn the A/C up to 72 because I was cold instead of 68 I normally keep it on.
  • Very little redness in the face
  • No sensation of my face burning or feeling on fire
  • Nearly normal energy level
  • Throat wide open- swelling about 90% gone
  • Able to be outside all day
  • No need for a mask when outside

I am thrilled with how well I feel. We were concerned that July, being the hottest month of the year, might not be very helpful for me. Those concerns are put to rest. I am so thankful for this unexpected week at the coast and even more excited to return this fall to see how much progress I will be able to make after an entire month.

Christal

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Filed in: Life with Masto | relapse | Road trip | TPN
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Miramar Beach

07.19.14

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

 

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Beachside Down Regulating

07.18.14

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

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