Allergic to the World

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!!

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It has been a while since my last update. It was great having some of the Boxberger clan in town for the OKC Memorial Marathon. Everyone did a great job! Plans are already in the works for next year 🙂

After the marathon, hubbie had a conference in Dallas. We thought we would attempt a road trip to see how feasible it is to travel with IV nutrition. It went pretty well but we did learn a few things to make it easier in the future. The pollen counts were lower in Texas and with different types than in Oklahoma. This was really good for me, not only for a change of scenery, but because much of my throat, lip and face swelling went away while we were gone. Most of my face redness and abdominal pain went away. My hair quit falling out as well. It was hopeful to think that in a few weeks perhaps our counts will be that low here.

The kids and I spent most of out time in the room but we did manage to get out two afternoons for one of my favorite activities…. shopping! Brit introduced me to my new favorite store, H&M. As we pulled up to The Container Store, just for a moment, I thought I heard a heavenly choir singing. 🙂 Hubster and the kids got to eat at two of their favorite places: Dairy Queen and In & Out.

Because there is no cure for Mastocytosis, the signs follows us wherever we go.  We can never be rid of its complications in our lives but we have a new “normal” now. You just have to do the best you can with what you have right now. You can’t let the memory of the past or the uncertainty of the future hold you back from today’s joy. This trip would have looked differently several years ago and will likely look different in the future. But today we rejoice for what we have. It was refreshing to sleep in, hang out, just spend time together as a family, and take a little break from all the medical stuff. I was pretty tired by the time we got home but overall we had a good trip.

I am so thankful for my extended and immediate family! Great people who I would choose to spend my time with even if they were not related to me 🙂

Children are a gift from the Lord; they are a reward from him. Psalm 127:3 NLT

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