Allergic to the World

Hello all! It has been several weeks since my last post. I know many of you have contacted me and wondered what happened after the Mast Cell Beach Experiment. First let me say thank you for your well wishes and notes of inquiry. Sorry I sort of left you hanging 🙂

My husband flew rom Oklahoma to Florida and helped me gather up all my stuff. We left and began the long trek back home. We made our first pit stop at around mile 150. After we got back in the car I began to feel the familiar pin pricks and hot swelling in my lips. It had been so long since I wore a mask I forgot to put it on when we stopped. I would not make that mistake again. The closer we drove toward home the more itching I experienced. Gradually the nausea returned and about an hour south of the Texas/Oklahoma border I got a couple hives. Two days after being home all my previous symptoms had returned and a few new ones. I had to go back on all the medication I was able to get off of or decrease while I was gone.

Back home

It was good to be with my family but physically I was miserable. By day three I was bed bound again and felt like the life was draining out of me. It became apparent there was no hope of eating or even using a feeding formula any time soon. My husband looked at me and said “we’ve got to get you out of here.”. With cedar pollinating season fast approaching (my worst time of the year traditionally) and my peanut-like allergy to it, we knew we needed to act fast. We had been planning for all of us to move at the end of the school year but we had also planned for many possible outcomes upon my return. My need to move sooner was one possibility we had anticipated. The saddest part would be knowing my family could not join me for several months. Selling the house, getting new jobs for my husband and daughter (not to mention all it takes to be licensed in a new state), and my son finishing high school were all things that would keep the rest of my family in Oklahoma while I made the early move. Thankfully, I knew I had a place to go and that was one of the biggest obstacles. After nearly 21 years as an Air Force wife, I can say I thought I was well prepared for a move with only a few weeks notice but this move presented with several new challenges.

Get Ready…

There was much to do in a short time, I was feeling pretty rough and had very little energy to accomplish my daunting tasks. We needed to get all the normal moving things accomplished but also a whole list of medical considerations due to my condition. Step one: finalize my Florida medical team. I would need my lifeline and only source of nourishment, my TPN. This required a new medical team including a primary care doctor, a mast cell specialist, a hematologist/oncologist, an allergist/immunologist, a compound pharmacy to make my special medications, a home health agency to change my dressings, and an infusion pharmacy to make my TPN and deliver my accompanying supplies. I had done much of the leg work while in Florida but more work was still needed to finalize all the details

Get set….

I met with our realtor and got the big picture of what needed to be done to list the house. She loved the floors my hubbie and his uncle installed in half the house. We needed to pack some things for me to take, some to go to storage and some we could get rid of. I froze some meals for the freezer when I was feeling up to it, left lists of where to buy all their favorite gluten free foods and simply tried to spend as much time with my family as possible.

Go…

When the day arrived, we loaded up my “mommy van”, as the kids like to call it, and began the journey back to the sunshine state. We were officially on the road to healing. We had no idea a year ago how many times we would make this trip. Along the way it was good to have quiet time with my husband and to walk through detailed plans for the coming 6 months. We finally arrived at my temporary home. We were so blessed to be greeted by my girlfriend, Cheryl. Lee worked hard to get me all moved in and then flew back home.

The new reality

As a former military wife when you get the word of a move you get into a mode. You sort of disconnect and do what needs to be done. Very little emotion is involved simple because there is no time. When you are settled in your new place then the flood gates open. Leaving my children behind did involve quite a bit of emotion, as you can imagine, but with the very real possibility of not making it through another winter in Oklahoma, I knew I would be able to be a part of their lives better from afar. Standing at the airport holding onto my husband as tight as I could, the reality of the situation hit me. Together for the last time for many weeks we just sobbed. I was ugly crying for sure. We will see each other for Christmas we told ourselves but that was of little consolation at the moment. We said our last goodbyes. As I looked into my rear view mirror for one last glimpse of him before I drove away it hit me. I am insane! This makes no logical sence. I am a sick wife and mother who has just left her family and moved across the U.S. by herself. Of course I will have Cheryl and her family and my occasional friends we have become affectionately referred to as Christalsitters. But a hole was left in my heart that would not soon be filled.

Now what?

In the days ahead I would begin to enjoy a slow return of energy. I was happy to say goodbye to my masks and it was good to be able to get out more. I made the trip into Gainesville, with the help of my friend Lisa, to see my new mast cell specialist. My new doctor is pretty amazing. My new home health is on the ball as well. These things coupled with the beach give me reason for hope for the months to come.

Finding your bubble

I understand that the Great Mast Cell Beach Experiment has helped many of you reconsider your environmental surroundings. Many of you are taking trips of your own and some planning moves to other locations where you typically do better. These are drastic measures for a drastic disease. Perhaps you do not have a madt cell disease but are being lead to something that is bigger than you can handle, something that is not logical. My best advise is to do what you need to live the life God gave you, pray unceasingly, and do your research.

Many people have said to me if you are allergic to the world maybe you need to live in a bubble. Most diseases are the same from one place to another, mast cell diseases are not always like that. For a disease that has no cure, avoiding your triggers becomes number one priority. If the house you live in or the part of the country you reside are part of the problem, you may have to consider all your options. If you are heat triggered then Florida, other tropical places and the desert will not likely be a good place for you. Transversely, if cold activates you don’t look north. Consider both what we call true allergies, ones where your body had made antibodies, and also those things that cause a mast cell response. You may be able to find your bubble or that little place that works just for you. On my recent trip to see my new doctor, who is located many hours from the coast, I did experience a return of several symptoms. So for me it is not Florida but rather the beach. While gathering all my records to move, I was reminded that I tested very high positive to all trees, grasses, and weeds. It occurred to me the beach is pretty much absent of those things, coupled with the ocean breezes and the healing properties of the salt water, my seaside retreat has become my bubble.

The Promised Land

All of this is to live the life God has given me, to be able to serve Him, to accomplish the opportunities He has given to me while I wait for the ultimate Promised Land. This may seem strange to us, insane in fact, but in some ways but it is just the way we should live. We have been given many examples in the Bible of people who did something in faith when it was not always logical. I will leave you today with some of my favorite verses from Hebrews that speak of this very topic.

Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for. By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible. By faith Abel brought God a better offering than Cain did. By faith he was commended as righteous, when God spoke well of his offerings. And by faith Abel still speaks, even though he is dead. By faith Enoch was taken from this life, so that he did not experience death: “He could not be found, because God had taken him away”. For before he was taken, he was commended as one who pleased God. And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. By faith Noah, when warned about things not yet seen, in holy fear built an ark to save his family. By his faith he condemned the world and became heir of the righteousness that is in keeping with faith. By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going. By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise.For he was looking forward to the city with foundations, whose architect and builder is God. And by faith even Sarah, who was past childbearing age, was enabled to bear children because she considered him faithful who had made the promise. And so from this one man, and he as good as dead, came descendants as numerous as the stars in the sky and as countless as the sand on the seashore. All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. People who say such things show that they are looking for a country of their own. If they had been thinking of the country they had left, they would have had opportunity to return. Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them. ~ Hebrews 1.1-16

If you are a follower of Christ, what are you doing today to live illogical faith?

Hope and healing,

Christal