I have Mast Cell Activation Syndrome, and it creates a condition called chronic urticaria or hives disease. These fancy words can be boiled down to one sentence: I itch..... bad.
Last night at 3 AM, I woke to full blown burning itching under my chin that my body had hinted at before I went to sleep. Fully awake and with a chin on fire with the need to be itched, but where itching makes the fire worse. I took two Benadryl and went to the TV Room to hide, hoping my husband could get some rest. My hands look like the picture attached to this blog post: red, splotchy, itchy, and burning. So this morning, I saw myself taking two more Benadryl, but the rash and itch simply spread up my arms and on the lower part of my legs. I have employed Clobetasol cream under my chin and onto my legs and the back of my hands. This cream is a topical steroid, which I suspect will do little to alleviate my symptoms.
What makes this condition so unbearable is the lack of relief. When I first had this illness, relief was only available to me in the form of oral steroids. I weighed 235 lbs on my 5'6'' frame when I typically weighed 150 lbs; on top of that, the hives still happened.
Now we have Xolair. An injectable that attacks the root of the problem associated with chronic hives or urticaria - the mast cells. The mast cells create histamines. It is theorized that my body cannot properly dispose of histamine or makes too many mast cells, which produce an overabundance of histamines,
Only as I am writing this blog do I realize that my monthly medicine for this condition is late by five days late. It will be nearly ten before I can get back on it because of the holiday delivery schedules. This means I may need to contact my primary care provider and/or allergist about prescription oral steroids if my itching doesn't subside today. Xolair is a new drug, and I have been taking it for about a year. I missed my refill window, so I suffer from my lack of organization. Staying on top of one's health is difficult at the best times, but adding stress makes it exponentially harder.
So here I am,, trying to stay busy so I don't rip off my chin and lower legs and fight with my husband. My husband is a fixer and when he sees me suffering, he goes into fix-it mode. Sometimes, this is helpful as the stress of the condition and my life makes it likely that I will forget something that could be helpful. However, when I have thought of and done everything possible, it leads to bickering, as already short tempers from lack of sleep and stress pop off like this current bout of hives.
Additionally, I came into my office to publish my daily geomantic drawing and found the "new old camera" we owned had died from a bad port. This camera took pictures of my desktop and showed figures most people have no context for. This means I cannot show figures for which people have no reference, so the second camera is pretty important.
Now I am Cyber Monday shopping for a new camera while trying to manage all the other problems that this bout of hives creates... everything from severe diarrhea to indigestion and upset stomach. One could hardly call my broken camera anything but a mild blip on my day compared to my challenges
I have to be judicious about using over-the-counter medications because my body might develop an allergy to them, sending me into anaphylaxis.
As I enumerate these issues, I am struck by the privileges I have.
I have a diagnosis
I have not one doctor but two doctors who will respond to me.
My husband knows enough about my condition to suggest things I might have forgotten to try.
I have a toilet with running water, hand soap, and toilet paper.
A powerful drug that is coming by week's end is paid for already and being delivered to me at no cost because...
I have health insurance that doesn't exclude me from the lifelong battle I had with neurocardiogenic syncope, MCAS, and Chronic Hives Disease.
I am on disability, so I don't have to have a full-time job and can go to bed if I need to
Besides, I have two partners who wouldn't see me destitute or struggling to pay to get what I need.
I am clearly aware that even as I struggle. I am far better off than others. What makes you better off than others?
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