Sorry for skipping yesterday's update! Yesterday and this morning were better days, thanks to IV Steroids. We decided to keep things status quo for another 36 hours to give my body a chance to rest and the Gleevec (oral chemo) to kick in. This evening, we are giving oral steroids one final try. If I "fail" this trial in the next 24 hours, we have decided that it looks like it is time to start the continuous Benadryl infusion. However, this requires admission to the ICU for monitoring If I pass, we will try to continue to ween the medication, and see if I will be able to come off of IV Benadryl. Fingers and toes are crossed.
As many of you know, Mast Cell Activation Disease causes symptoms which mimic food allergies, in which foods are triggers for these episodes of Anaphylactic shock. My known food triggers are peanut and coconut, potentially Almond as well. We refer to them as food allergies since it is food that causes allergic reactions, although it is not through the typical food allergy process. May 14th to the 20th is Food Allergy Awareness Week, and I have two favors to ask you all, and ways that you all can help an individual who has personally saved my life. My friend Madeleine Camille was the individual who reached out to me and told me about Mast Cell Activation, Ehlers Danlos, and POTS. When she first reached out to me, I honestly thought she was crazy, all of this was just a food allergy. But, she was right-- about EVERYTHING. And right now, she is in desperate need of help. Madeleine Camille has the same conditions I do, but more severe. She is currently in such a tight financial situation that she is being forced between health insurance, her prescription/compounded medications that insurance won't cover, safe food, and a wheelchair. She has two campaigns going to help her keep her home. One is called "Ninja Nuts" for food allergy awareness week- she hand designed these shirts, and are available to order:
https://www.booster.com/ninja-nuts
Madeleine Camille is also triggered by peanuts like myself, hence the "Ninja Nuts" design. She has more info on that page.
In addition, she has a YouCaring set up as well, which explains her full story. I know its weird for me to be asking for help for a friend on here, but Madeleine Camille has truly been my rock, and I hate to see her suffering as well. She is also in the hospital right now as well. The second favor is that if you don't want a Ninja Nuts shirt for food allergy awareness, to contribute anything you can to her YouCaring. https://www.youcaring.com/madeleine-684635
It would mean a lot to me to have my friends and family also help out Madeliene Camille. I am fortunate enough to have all of you, as well as the financial support of my family, but not everyone is quite as fortunate in that regards. Please let me know if you have questions that I can answer or pass onto Madeleine Camille herself.
I will keep you all posted on the steroid trial.
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