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Category Archives: TPN

Crystal Beach

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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Catching Up and Duck Dynasty

Mastocytosis Flare Recovery month 9 day 15

Happy happy happy

Lots to catch you up on.

Month long trip

Many of you have ask me if we are moving to the beach. In short, we don’t know. At this point we are going to follow my doctor advice and I will take a month long trip this fall during the most dangerous time of the year. The hope is to avoid the backsliding that usually occurs at this time of year but also to heal and get better.

Beautiful flooring

In an effort to do everything in our power to make Oklahoma work out for us, we spent the last month identifying potential mast cell triggers. This week my loving hubbie took the carpeting out of the rooms that I spend the most time in. To avoid the dust and odors associated with installation, the new floors will be put in while I am gone this fall. This leaves a gap with only the bare concrete floors. A couple of weeks ago, my balloon on my feeding tube broke and I had to have it replaced. Thankfully anesthesia was not needed. When the tube was removed I commented on how disgusting it was. Dr. Miner said ” this is your lifeline, it is beautiful”. His seven simple words have caused a real change in my outlook. He was right, my image of beautiful needed shifting. My concrete floors are helping me to eliminate triggers, they are reducing my allergen exposure, they are helping me get better. They are beautiful

Formula test

My last post to you detailed my adventures of trying my new formula. I am happy to report there were no major side effects. It took my body a really long time but it did process the formula and with out any allergic reaction! PTL!

Medicine test

On the other hand, I recently tried another new compounded medication and it did not go as well. It was a good reminder of how far I have come.

Last minute trip

Many if you know my daughter just graduated this May. She planned a Florida trip for her and three if her girlfriends. At the last minute one of the girls was unable to go and wanted to gift the trip to someone to bless them. I was so excited they invited me to tag along. As I write this, I am in the car in the middle of Mississippi. I will be posting about my progress in the days ahead. Here is a little selfie.

Duck Dynasty

Last night we spent the night in Monroe, Louisiana, home of Duck Commander and the popular television show Duck Dynasty. Before we left town we made a little pit stop to check it out. No Robertson family sighting at the shop but we had a fun time.

Us with si from duck dynasty

I wonder if I’m the first person to be running TPN at Duck Commander.

Blessings,

Christal

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The Gift of Leaving our Comfort Zone

The gift of leaving your comfort zone

The Comfort Zone

We all have a place we feel comfortable. Perhaps it is where we shop, go out to eat, buy groceries, it can be anything really. We like things a certain way, it makes us feel comfortable. There is a huge component of my disease that is environmental however, my doctor believed there was more to the story. Suspecting we were missing a trigger in our home, my mast cell specialist suggested I spend several days at my parents home to see if any of my symptoms would be better. I wanted to do everything possible to make a positive difference in my health but with such an obvious difference the environment made I was not convinced that our experiment would find too much. I love going to my parents house but I also like my house, it’s comfortable, has all my stuff there, and it’s where my hubbie and kids hang out. Since I was diagnosed with Mastocytosis in 2007 we have literally made hundreds of changes to our house and lifestyle to provide a mast cell friendly home for our family. My house is my comfort zone.

Doc Was Right Again

After four days at my parents house we found I was about 30-35% better. Although it was not the stark night and day difference I had experienced in South Padre, it was progress. I was surprised. After two hours back home, the familiar zingers in the lips and throat began to return.

The Hunt is On

At that moment the hunt began. What were the differences between my house and that of my parents? We brainstormed several things and have been working wildly to make those changes.

  • Allergy mattress encasement. At my parent house I slept in my fav spot… the leather sofa. I have always found leather sofas so cozy but not too hot. In some online mast cell forums participants have mentioned they had increased symptoms when sleeping on memory foam. An encasement covering all six sides provides a barrier from the foam.
  • Vacuum. We had a popular allergy vacuum but found every time it was used I needed to be out of the room to avoid sneezing. We recently got the Dyson DC41 animal control and it has been amazing! I can’t believe the great job that it does. I do not sneeze when it is being used and I can do the vacuuming myself without getting sick.
  • Vents professionally cleaned. Mike and his great staff at Allergy Control have always done a great job for us. It had been 2 years since we had them out and it was well overdue. They can show before and after videos of your ductwork with a tiny video camera on wheels. We had them clean the system and also do an anti microbial fogging. The smell was pretty strong and I could not stay at the house. Off to my parents house to escape the aroma.
  • Granite counter tops. What do counter tops have to do with health? I had no idea but some reports show unsealed granite emits radon and other forms of radiation. Lee sealed our counters again but the fumes proved to be too much for me. Thank The Lord for my parents house. After a day the odor was gone. I don’t know if granite really emits anything but I do know we are trying everything possible to make it better here before considering a cross country move.
  • Carpet removal will take place next weekend. We looked into stained concrete but we will be replacing the original carpet with wood floors.
  • The dog. Our last thing to try has to do with our dog. Chance is our 13-year-old chocolate lab. We adopted him shortly after moving to Oklahoma. Although I did test for positive for allergies to dogs, my allergist said he was more of a danger from the grass, pollen and outside allergens that he brings in on his coat than to him. We did try keeping him outside for several days and that did not seem to help my condition. He has been an inside dog for 10 years. Even with him outside there is likely evidence of him in the carpeting throughout our house. So for now we are vacuuming his fur almost every day (he loves it) and bathing him weekly with a mild moisturizing shampoo as my allergist recommended. We will see what happens after the carpet is replaced. We hope we don’t have to look into other options for him.

The Biggest Difference

Almost every change we have made has been helpful. The most significant was having the vents cleaned and fogged. My swelling has gone down about 20-25%, I have a more energy, less pain, and I have been able to decrease the steroids, which is a huge accomplishment after nine months!

Humility and growth

It is easy to do what we have always done instead of seeing the gifts that moving from our comfort zone might bring us. Humans are creatures of habit. Setting aside my own preferences and getting to out of my comfort zone has played a big role in being able to move forward with this little experiment. My doctor was right again, did I mention that man is brilliant? It turns out there were unknown triggers in our home that needed to be addressed, even after 7 years of elimination. If I had been stubborn about what I, thought I knew, I would not be making progress. I would not be experiencing the gifts of better days if I had not gotten out of my comfort zone, literally. This can certainly be applied to every area of our lives. For example, we may never discover a new fav restaurant if we first don’t let go of the one we are comfortable with. We may never have our dream job if we don’t first step out in faith. God longs to give His children good gifts but sometimes it requires us to humble ourselves and let go of something first. Maybe it’s a bad habit, an attitude, thought process, or the way we see others. If we truly want to walk the talk we will let God lead us, even to places we are not comfortable. This reminds me of a verse in Deuteronomy. I have often referred to my TPN as manna. I love how God provides everything we need, he is awesome!

Deuteronomy 8:2-3 And you shall remember the whole way that the LORD your God has led you these forty years in the wilderness, that he might humble you, testing you to know what was in your heart, whether you would keep his commandments or not. And he humbled you and let you hunger and fed you with manna, which you did not know, nor did your fathers know, that he might make you know that man does not live by bread alone, but man lives by every word that comes from the mouth of the LORD.

Peace and Joy,

Christal

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