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Monthly Archives: June 2014

The Gift of Leaving our Comfort Zone

06.29.14
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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Christal
Filed in: Life with Masto | relapse | TPN

I Leave It In Your Hands

06.10.14

Mastocytosis Flare Recovery Month 8 Day 13

 

Should We Stay Or Should We Go?

Since we have been home from our trip it has been a whirlwind to say the least. While on a recent trip to the beach nearly all the symptoms went away. You can read more about that here. Many of you wrote to me saying we should move, others have encouraged us to get a vacation home on the beach to allow me to travel to seasonally. My mast cell specialist was very encouraged about my progress while away and not surprised symptoms returned after a few days. He said my seven-day trip was not long enough. He wants me to go away for a month during the fall flare time. In theory this will not only help heal my current symptoms but also avoid getting worse during the most dangerous time of year. We are working out arrangements to make that happen. Although a month-long trip to the beach may sound great, there are many details to work out. Add to that all the arrangements if you are on a PICC line and receiving home health care.

Hidden Triggers

Since I generally get better when going out-of-town, my doctor wants me to run a little experiment to see if I am reacting to something in my home that we are missing. This week I am staying with my parents. It has been good spending time with them. We will know more by the end of the week how it will turn out. The fact that my swelling started to return 93 miles from the coast tells me that it is likely environmental. However, like everything else with this disease, there are many pieces to the puzzle. We are going to be diligent and run down any possibility he suggests.

Leave it in His Hands

At this time our future us unclear. Our thoughts are filled with confusion and hope.  God is bigger! I want to share my new fav song that I have been listening to repeatedly. I’m so grateful for artists that write music that express what is in my heart and soul. I hope this song blesses you today.  No matter what you are going through God is bigger.

In your hands by Unspoken

The dawn is breaking and I can hear Your whisper in the breeze

The world is waking and I am here to meet You on my knees

When I’m with You my soul finds rest

Cause I can leave it in Your hands

The day keeps coming pulling me a million different ways

I’m always running but never seem to catch the things I chase

When I’m with You my soul finds rest

Cause I can leave it in Your hands

Every sorrow, I leave it in Your hands

Every sickness, I leave it in Your hands

All my failures, I leave them in Your hands

Amen, I leave it in Your hands

So I am laying the weight of all these burdens at Your feet

No more waiting, cause You’ve already won my victories

In Jesus my soul finds rest

Cause I can leave it in Your hands

Every promise, I leave it in Your hands

Every healing, I leave it in Your hands

And my future, I leave it in Your hands

Amen, I can leave it in Your hands

It’s Your hands that form the mountains

Your hands set boundaries for the seas

And in Your hands You hold tomorrow

The same hands that took the nails for me

Every sorrow, I leave it in Your hands

Every sickness, I leave it in Your hands

All my failures, I leave them in Your hands

Amen, I can leave it in Your hands

Every promise, I leave it in Your hands

Every healing, I leave it in Your hands

And my future, I leave it in Your hands

Amen, I can leave it in Your hands

I can leave it in you hands.

 

Christal
Filed in: Life with Masto | PICC Line | relapse

Vacation from Mastocytosis

06.02.14

Mast cell vacation on the beach

Mastocytosis Flare Recovery Month 8 Day 5

I have not posted an update recently because we were out-of-town. It was a great trip! It was pretty challenging getting everything ready to travel with I.V. Nutrition and all that goes along with it. It reminded me of traveling when the children were babies and all the extra stuff they require. Once we were finally gone it was very good. After 4 days of being gone almost all my symptoms were gone. It was the first time I have felt “normal” in a very long time. My hair quit falling out, my lip swelling was gone, throat swelling was about 90% better, abdominal pain was greatly reduced, lymph node and bone pain were gone, my face redness mostly went away along with face swelling. My face did not feel like it was on fire, I had energy, heart palpitations were gone, and I only had one night of insomnia. I was able to be outside in the sunshine and the sun felt fabulous on my skin. The temps were pretty consistent so heat was not a problem in fact we were able to set the a/c as high as 75 and I was perfectly comfortable instead of the usual 65 at home. I was able to walk on the sand and get some exercise, which is usually a trigger. I played games with the family and put together a 500 piece puzzle so cognitive dysfunction and brain fog went away. It was wonderful! I was able to decrease my steroid use with out the swelling returning and was able to add a medication I have attempted for several years. I felt like myself again.

When it was time to come home, I was sad. Of course everyone is a little sad when a vacation is over because it means it is back to reality. This was more than that. There is no cure for Mastocytosis. Living with an incurable disease means there is some level of suffering you must endure. Sometimes it is manageable and others it is life threatening but it is never absent. Although I have had some symptoms since I was 19, symptoms have been manageable with the exception of the last decade, most notably 2006-2008 and 2013 to present. The times I have done the best have been when I am on the beach. My family has sacrificed greatly to give me a vacation each year on the beach so I can feel normal for a little while. 93 miles from the coast my lips began to feel the all too familiar electric-like stinging in my lips as they began to swell. Fortunately, I had my new medicine I was able to take, which helped keep things from progressing. After 4 days of being back home all my symptoms have returned in spite of being maxed out on all my medication. Back to reality.

As we drove away from the coast I had a general idea of what I would be going home to. Speeding down the highway and moving closer and closer to what I knew was my reality I thought about the life of Christ. As he prepared for the Passover he knew what he would be facing and the suffering he would endure. He willingly continued on his road because he loved each one of us so much. Obviously the torture he would undergo was enormous and what I live with each day is nothing compared to him, yet he faced it willingly. Another major difference between those moments in the life of Christ and my drive back home is that I really had no choice and I am weak and powerless. I can’t hold a job, support or even take care of myself. Jesus was the Son of God, he could have done something about it. He could have called ten thousand warrior angels to fight for him but he didn’t. He laid down his life willingly for us, to allow us to have eternal relationship with God. As the miles passed and my symptoms returned one by one, I began to understand a little more and to truly appreciate what He did for me. This is one of the many reasons I love Him so very much! Thank you Jesus for loving me that much!!

 

Christal
Filed in: Life with Masto | PICC Line | relapse | TPN
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