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This is where the healing begins

Mastocytosis Flare Recovery Month 9 Day 16

Road Trip

After two days on the road, we finally arrived in Florida. I don’t like sitting for so long but really enjoy seeing new and different things along the way. I find America is pretty interesting and it’s people are very diverse. One of the best parts of a road trip for me are all the strange and funny little things you see along the way. This was a Dallas restroom that had an honest to goodness old-fashioned metal prison door on it- yikes! I knew no one would believe me so…

You ask yourself “Did she really take a photo of a bathroom door? ” Yep, that just happened! When I sent this image to my hubbie he said they just didn’t want anyone to steal the TP- lol!

Progress

I have been struggling with this latest round of severe allergic relations since fall 2013. On a recent family vacation to the beach nearly ally my symptoms went away. In May it took about 4 days to really get the full effect of feeling better. You can read about that here if you missed the original post. I have been here about 24 hours and I have started to see some improvement.

  • I am able to go outside without wearing a mask. Other than our beach trip in May it has been months since I could do that. I tried on the road yesterday in both Louisiana and Mississippi and it was no bueño.
  • I have been unable to wear any make up of any kind, including lip balm, for more than nine months. Today, I was able to use a tiny amount of coconut oil. My lips were very happy!
  • Sunscreen has been a huge problem for many years. Today I was able to use some California a Baby Super Sensitive stick without being sick.
  • We were in town just a few hours when the girls mentioned how much better my color was. What do you think?
Healing begins 1
This was in the beginning of May
Healing begins 2This was yesterday
Healing begins 3 This was today
Having only arrived here last night, I think that is a lot of progress. I am excited to see what happens this week and also this fall.

On the agenda

In the days ahead I hope to reintroduce formula, decrease the steroids, and get a little vitamin sea. It will take weeks or possibly months to increase the formula enough to get off the PICC line. Recently, I have been very hungry. Last go round, the hunger returned  just as couple of months before I was able to start trying new foods. I pray that is true this time!

Healing begins

Many of you have told me you love when I post a song or lyrics. In our family we joke about our Soundtrack of Life because it always seems there is a song or verse that fits the situation perfectly. I have been thinking of this chorus all day, it’s Healing Begins by Tenth Avenue North.

This is where the healing begins, oh

This is where the healing starts

When you come to where you’re broken within

The light meets the dark, the light meets the dark

Hope and joy to you,

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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