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Category Archives: Life with Masto

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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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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