Allergic to the World

Mastocytosis Flare Recovery month 9 day 15

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.

I wonder if I’m the first person to be running TPN at Duck Commander.

Blessings,

Christal

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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