Well, I'm starting a new cocktail. Not exactly the kind of cocktail I'm really craving, but hopefully it'll do the trick regardless. It's the Mast Cell Activation Disorder cocktail. That's a mouthful! Why can't these conditions have nice short names. Now, when a doctor asks if I have any known conditions I have to rattle off Postural Orthostatic Tachycardia Syndrome and (if these meds work) Mast Cell Activation Disorder. That mouthful will be shortly followed by a dumbfounded expression from the hypothetical Doc as most have never heard of either condition.
The cocktail consists of Cromolyn, Pepcid, and Allegra. The Cromolyn is a liquid that I will mix with water and take four times a day (30 minutes before each meal and at bedtime). It is used to prevent the mast cells from degranulating which is a fancy word for spilling their nasty toxins into my system. The Pepcid and Allegra are just your regular old H1 and H2 blockers. They block the histamine that the mast cells release as the Cromolyn won't be able to completely stabilize things.
I'm praying this will help as these past few weeks have been miserable. The shortness of breath has still been better and I'm thanking God for that! I didn't even realize how much of an issue it was until it was gone. Amazing and so thankful for that! The rest of my symptoms are being more stubborn. The nausea, brick in gut feeling, muscle weakness, tinnitus, puffy eyes, tachycardia, extremely dry throat and skin, etc. has all been terrible since I've been back from Arizona. I think it's probably a combination of seasonal allergies along with all the other things I have going on. Whatever it is, it's miserable.
For Mother's Day we took our kiddos to the zoo. Our toddler LOVED it! She didn't want to leave the Prairie Dogs which makes sense since her best friend is her stuffed Prairie Dog named Baby Jack. He's the ugliest stuffed animal I've ever seen, but she adores him! We were only there for a couple of hours but I felt as if I had walked for days! I had a migraine, my heart rate was through the roof, extreme muscle and joint pain, terrible nausea, and lots of pressure in my head and ears. It gets frustrating! Shouldn't a mom in her 20's be able to take her girls to the zoo without feeling like she's been hit by a truck? I'm sure it will take me a week (or more) to recover from that little outing. It was completely worth it for the memories made and time spent with my little family, but frustrating nonetheless. One of these days I may need to swallow my pride and use the train tours or (gasp) use a motorized scooter, but that's a topic that deserves a post all it's own. When you appear healthy on the outside, it's hard for people to understand you might actually be disabled! I'm afraid if I cave to the scooter concept I would ride around with a middle finger in the air in response to the dirty looks ignorant bystanders might give me. I should mention that I'm normally fine walking. I only struggle when it's excessive (such as at a zoo or shopping). Considering this new cocktail is going to work, I won't need to worry about a scooter! The power of positive thinking! :-)
"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28
Amy
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