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Mast Cell Beach Experiment Nearing the End

Newton’s Third Law states for every action there is an equal and opposite reaction, the same can be said of Mastocytosis and mast cell diseases. When you make a change to one area there is often an equal or bigger reaction in another area, since we are dealing with hypersensitive cells. Think of it as cause and effect. I picture myself standing in the middle of a giant teeter totter trying to balance both side…. while juggling. 😉

Ups and downs

Over the last several days I have been able to successfully reduce the dose of steroids, yippee! The effect has been low blood sugar, very low. I normally have low blood sugar but steroids can raise sugar. Over the last year my body has compensated but with the reduction in steroids I have really experience that equal and opposite reaction. While decreasing the steroids my blood sugar has routinely crashed into the low 50’s three or more hours before the next TPN dose is due. This has been problematic as I typically run 16 hours on TPN and only 8 hours off. Three hours really cuts into those 8 precious hours of untethered freedom. If a normal person was struggling with some low blood sugar they would eat a snack or drink some juice but I don’t have those options available to me. I tried to put some sugar water in my feeding tube and although that did work to raise my numbers for about an hour the reaction was I was very sick for 2 days. I know they make sugar pills but that is essentially the same thing as sugar in the tube. So my remaining option, directed previously by my doctors office, was to extend the amount of time that I am on TPN to 18 hours on. It was disappointing but over the next few days my body adjusted and I was able to reduce the running back down. Additionally, I was able to reduce the time even shorter than I had been able to do over the course of the last year. I’m currently running 14.5 hours a day and with the direction of my doctor I hope to be able to get to 12 hours on and 12 hours off.

Nicole left today and Lee flies in tomorrow. We will go back home in a few days. Once he is in town I will try some formula again. The time has passed much quicker than I thought it would but I miss my family tremendously. They have all worked very hard completing tasks that can’t be done when I am around to prepare our home to put be on the market. I have pretty new floors in about half my house (with help from Steve Boxberger) The floors are formaldehyde free, low VOC, a green product and look beautiful. My family has also restained the window ledges, painted baseboards, held a garage sale (with a lot of help from Kayla Thompson, Cyndi Lackey, Twyla Roe, Caryn Adams, Lindsey Foster, and Nita Smith) and completed a host of other projects. They are looking forward to some well needed rest.

One Year Anniversary of Mastocytosis Relapse

As much as I miss my family I am also nervous to return. The mast cell patients who live in the area have really been struggling this fall flare season. It has now been a year ago that I experienced anaphylaxis that sent me to the ER after a photo shoot, life has not been the same since. That is not an anniversary I want to celebrate. I can think of a least six nights over the past year that I honestly did not expect to make it to see the sunrise. Memories like these are still too fresh. The suffering has been real and I don’t want to suffer like that again especially after feeling so much better.  I know how many of you love the music videos I have posted in the past. This one sums up my past year, it is at the end of the post

Redemption

The problems have been ever present but so has my Savior and Redeemer. Since being here at the beach I have made progress in the following areas

  • I don’t have to wear a mask outside
  • Throat, lip, and tongue swelling is gone
  • No numbness or tingling
  • No flushing or redness- except a mild sunburn:-)
  • No night sweats
  • Hand and feet swelling is gone
  • I’ve reduced my steroids
  • Face and abdominal swelling is reduced- probably from the reduced steroids
  • I’ve shortened my TPN running time – meaning my pancreas is regulating insulin better
  • No nausea or headaches
  • Abdominal and back pain greatly reduced
  • Energy is increased to a normal level
  • I am able to exercise every day and regained some muscle tone
  • Food is smelling good instead of making me want to gag
  • No itching or hives

I have to go home to get more TPN, without it I have no food. We are praying for the best and preparing for the worse. This month has given me a glimpse of how my condition will likely improve after our move. There is no cure for Mastocytosis but God has shown us a place that will help me improve long term, LOVE that guy!.

Mast cell beach nearing end

At the moment I have all I need—and more! …. And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus. Now all glory to God our Father forever and ever! Amen.Phillipians 4:18-20

Hope and healing,

Christal

Stephen Curtis Chapman Long Way Home

I set out on a great adventure
The day my Father started leading me home
He said there’s gonna be some mountains to climb
And some valleys we’re gonna go through

But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper
And the mountains are steeper than I ever would have dreamed

But I know we’re gonna make it
And I know we’re gonna get there soon
And I know sometimes it feels like we’re going the wrong way
But its just the long way home

I got some rocks in my shoes
Fears I wish I could lose
That make the mountains so hard to climb
And my heart gets so heavy with the weight of the world sometimes

There’s a bag of regrets,
My should’ve beens, and not yets
I keep on dragging around
And I can hardly wait for the day I get to lay them all down

I know that day is coming
I know its gonna be here soon
And I won’t turn back even if the whole world says I’m going the wrong way
Cause its just the long way home

When we can’t take another step
The Father will pick us up and carry us in His arms
And even on the best days, He says to remember we’re not home yet
So don’t get too comfortable
Cause really all we are is just pilgrims passing through

Well, I know we’re gonna make it
And I know we’re gonna get there soon
So I keep on singing and believing
What all of my songs say

Cause our God has made a promise
And I know that everything He says is true
And I know wherever we go
He will never leave us
Cause He’s gonna lead us home

Every single step of the long way home
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)
(We’re just taking the long way home)
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)
(We’re just taking the long way home)
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)
(We’re just taking the long way home)
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

 

 

Christal

Mast Cell Beach Experiment Day 20 Clean Air

Today I took my parents to airport and picked up my friend Nicole to be my next babysitter 🙂 Update on a couple of weird new things going on. The smell of food cooking over the past year has either been neutral, meaning not good not bad, or has instantly made me start gagging, usually depending on the exact food. Over the last few days food has started to smell good to me. Then today , for some reason, I am craving Reese’s Peanut Butter Cups. Although I know good and well from past experience what will happen to me should I give into these temptations I think it is a good sign that my body is beginning to see food a little differently. Hopefully it is preparing itself to start working again.

Prednisone update 14.5mg/day

Travel Accessories

I have received many questions about a couple of the items I brought with me to the beach, specifically about my air purifier, the masks I wear, and my vacuum. I am completely aware of how strange it sounds to most people that I travel with an air purifier but I live with a strange disease that make it a necessity. Many of the questions I have received are from others who have a mast cell disorder and have been unable to travel for years or from people who just want to live a healthier life. Many of you are planning trips to the beach and other locations to see if it improves your health. I will be doing an end if trip review and FAQ post at the end of the beach experiment so send me your questions and I will try my best to answer them. For today I will talk about these products that make travel possible for me and I hope in sharing this that you too will be able to travel soon.

Triggers

We have already talked about the importance of clean water in our first in an ongoing series on reducing chemical exposure. You can read about that here if you missed it. As a mast cell patient I need to control any and all known triggers. Triggers are anything that can cause the mast cells to dump their hundreds of chemicals into the blood stream. Everyone has mast cells, they are part of our immune system. When you come in contact with something that you are allergic to or your body thinks is an invader, your mast cells get agitated and that is when the chemicals are released. Once the chemicals like histamine, heparin, tryptase, and prostaglandins flood your system you have allergic type responses such as sneezing etc. When you have too many, like I do, or they are hypersensitive this chemical dump can make you very sick and it can even be dangerous; think peanut allergy. Avoiding triggers is of primary importance.

Mast cell triggers
What looks like this to some people….
Mast cell clean air

Feels like this to come one with a hyperactive immune system.

Clean Air

Last year, after experiencing anaphylaxis for no apparent reason that did not resolve, my doctor ran all sorts of tests. Something like 13 vials of blood were taken. Among the tests various environmental allergies were tested. A couple tests came back positive only one of which is a problem in Oklahoma, the dreaded cedar! Cedar is unusual as it pollenates in the winter, typically November through March where I live. As Cedar season was approaching and knowing how bad the preceding years had been, we knew a change needed to be made. We needed to order an air purifier but which one.

Types of Air Purifiers

I researched and read reviews until I thought I would go cross eyed. I knew from the past that there are several types of purifiers.

  • Ozone- not so good for myself or other mast cell patients I know.
  • Ion- very expensive but quiet and had good reviews. I ordered one of this type first. From the moment I turned it on it made me sick. Literally, I became very nauseated. After repeated attempts with the same response, we sent this one back.
  • UV lights- mostly designed for whole house central air and heating but some small portable units. I found inconsistent reviews as to their effectiveness.
  • Filtration- These varied greatly from standard air filters, HEPA, HEGA, charcoal, and so on. This is what has really worked for me and my family.

And the Winner Is…

I chose the Austin Air Jr. as it was going to be in our bedroom. I love it!!! Filter costs were reasonable. This little guy is amazing and has made a big difference. We have taken it on trips with us “just in case” and have needed it every time. I won’t travel with out it. I love that it has 4 different types of filters including one for fragrances which had been a life saver in hotels where there was a heavy smell of cleaners, perfumes, etc. you can read more about it here

 

Or here

http://www.achooallergy.com/austinallergymachine.asp

Right now Achoo allergy is having 10% off with code fall14
T
They also offer a bigger unit if you have more square footage to purify.

Mast cell mask

Masks

I have a love hate relationship with masks. I love that I can get out more when I use them and I love that I don’t usually get additional swelling when I wear them but I hate that people point and stare. I just had to choose to let that be their problem. I try to use those moments as educational teaching moments when the times arise. Surprisingly, I get a lot of questions about if I am a prepper and it’s the end of the world or if I’m going to rob the store? What?? I need a funny ice breaker in those instances. I’ve thought about “No, I’m a superhero and this is my disguise”. I use these N95 masks they are rated as surgical, they have a vent which makes them TONS cooler on your face, and filter 95%.

Vacuum

I vacuum everyday at home. It really helps keep the allergens down. Here at the beach and with my pooch miles away at home I don’t have to vacuum everyday but every couple for sure. I don’t normally take my vacuum when I travel but being gone a month I knew it would be needed. The biggest thing about vacuuming, you need to make sure you are not just recycling the dust. By this I mean you suck it up, it goes through the filter, then it comes out of the back of the machine to simply become airborne again. I have had a lot of different machines specifically made for allergies over the years. My Dyson is the best, hands down, and I will never own another brand again! My family used to have to vacuum for me while I was gone or on the other side of the house. With the Dyson I can do it myself with out sneezing and it is very light. It is very powerful. When I got it, I did a test. I ran my old vacuum first and then ran the Dyson. In theory the floors were clean so I should not have picked much up. I filled the tank one and a half times. I was happy and grossed out all at the same time.

These products have been an investment in our health and my whole family has noticed a big difference. The first thing people say to me when they see the price of these items is that is too much money. It has taken sacrifice to make these purchases and we have had to go with out a lot of other things but we made the choice to try and improve my situation and it works. I use them at home and travel.

Hope and healing,

Christal

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal

Mast Cell Beach Experience Day 17 Storms

Storms of Life

Right before we arrived here in Florida the remnants of a big tropical storm pounded the shore leaving behind broken shells and an uneven shoreline. The evidence that something very violent happened here was evident. Over the past few days we have had several big storms blow in including a really bad one overnight. I know it was bad because the sound woke me up. That is not unusual In Oklahoma but here the Florida the condo I’m staying in has big heavy hurricane windows and doors and the building is solid concrete. It can be storming like mad outside with ten feet of visibility but you won’t hear a thing inside. So for this storm to be so bad that it woke all three of us from a dead sleep, it had to be quite a storm. The next day it continued to rain all day and into nightfall.

Today you can say it is the calm after the storm. It was nice to wake to today and see the sun poke its head up after so many days of rainy and stormy weather. The water is a beautiful aqua and so clear I can see through the waves. The shore line has been smoothed. It’s a nice gradual walk into the water, and all the broken bits of shell have been whisked away leaving only soft white sand under the surf.

This reminds me of our lives and the trial we go through. Sometimes the storms in our lives produce brokenness. The evidence can be seen all around us. If the storm continues for an extended period of time or if it is particularly strong or devastating there may be no area of our lives that goes untouched. It may seem overwhelming. As the battle rages on, it appears as though troubles will never end. Then there are times when wake to see the storm has purify or prune us of the unnecessary junk in our lives. What seems painful in the heat of the battle actually helps to remove the obstacles between us and living a healthy, balanced, and purpose filled life. What is left behind is a simplified peace, a new normal.

Genesis tells us we live in a broken fallen world. There will be troubles and trials, there is no if about it. Jesus was the only perfect man and he had more than his share of troubles. If Jesus experienced pain and suffering in this world, why are we surprised when we do? This is not Heaven. Jesus tells us in John 14:30 that this world is ruled by Satan. BUT he does not have the last word. We have a Redeemer who uses everything, if we let Him. The storms of this life will not have the last word. Hold on tight to The Rock and be encouraged by theses words:

There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

Romans 5:3-5The Message (MSG)

Hope and healing,

 

Christal

 

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The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.

Christal
M o r e   i n f o