Relapse

Although the seasonal cycle here in Oklahoma usually provides a slight reprieve for mast cell sufferer in summer and winter, that did not happen in 2013. It may have been the May outbreaks of tornadoes or the fact we never really saw the HOT temperatures but, like most things mast cell related, there is usually more than one contributing factor. It’s more like a jigsaw puzzle, every piece plays its part. For me those pieces  fit together to create a perfect storm which has caused a major relapse.  A bug bite, inadvertently eating some food I am intolerant to, lack of a summer down regulating time, and the famously dangerous fall flare season all played their part. On September 24th I ended up in the ER with some symptoms of anaphylaxis, included my throat swelling partly closed. It was very painful and very scary!

No one ever wants to be in the ER but for a mast cell patient it often means not only seeking urgent medical attention but also having to explain your rare condition to people who have gone to school for many years but have never heard of what you have. It is a very fine line to walk. How do I explain what I have, my extensive drug allergy list, without making this very educated person feel like they don’t know what they are doing, that I am not trying to tell them how to do their job, without sounding like a crazy person, and in an emergency that may make it difficult to speak. I have written before about the glories of the Mastocytosis Society’s “Emergency Room Protocol”. You can read the article here.   No matter how you prepare, you still never really know how your doctor will respond.

This was a pretty good experience, as ER trips go. My doctor really didn’t understand my disease but he recognized an allergic reaction when he saw one. Due to the high allergic response of Masto patients, trying new medication is typically not the best decision when already in a crisis unless there is no other option. There was some discussion over giving me alternative medication, instead of what we knew had worked in the past, but it all came together.  I left with in a few hours with orders for high dose steroids and Benadryl. The swelling never went completely down but I was no longer in an emergency situation. When you experience an allergic reaction of that level, it is easier to have another one in the coming days. Medication for a week is generally the standard of care.

For me, the problem came when the swelling was not better many days later. From time to time, the swelling would actually get worse and there was no chance of getting off the medication. I made a trip to my specialist, who takes care of all my mast cell issues. He ran many specialized tests and scheduled me on October 9th for some biopsies.

In the coming days eating became increasingly challenging. The severe pain and swelling attacks were back after eating. I was now having allergic reactions to my safe foods. My already tiny food list was shrinking by the day. Soon I was down to only lamb and rice. I mean ONLY lamb and rice, no seasonings of any kind. Another week and lamb was the next to go, leaving only rice.

I was now losing weight at a fast rate. The swelling and my limited diet prevented me from eating a proper calorie load. I became increasingly dizzy and weak. All activities on the schedule have now been canceled, driving was definitely out of the question, and now with the increased need for Benadryl ever 4 hours round the clock, I spent most of my time in bed. I am not really very good at asking for help. I’m not sure why that is, probably because it is so very humbling. I am happiest helping others all day long but I don’t like being on the other side of things. Between the pain, being drugged up, and not being good at asking for help, I haven’t really shared with many people about what has been going on.

As family and friends began to hear about what was happening, my very own prayer Army begins to spring up. I am so thankful! It starts out with my family and about 7 of my best friends from high school and the various places the military has taken us. My church pastoral staff commits to lift me to The Lord. My choir family hears the news and begin to pray relentlessly, and let me tell you what, that group can pray! My aunt’s Bible study group in California joins. This is overwhelming to me as I have never met any of these great prayer warriors but they begin a fervent endeavor and check-in often with my Aunt. My Sunday School class comes along side me as do several other friends. In the coming days over 100 saints enlist in the prayer army and are serving at various times throughout the day and night. I am blessed beyond words. This amazing outpouring has taught me two things.

• When you humble yourself and set aside your own pride, you make room for greater things that God has in mind
• No one can come together like the Family of God.

Thank you all so much! Words can never express how much I love you.