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| Blurry photo of me because my hands won't stop shaking. |
The video shows a young woman, like me, going through her daily life and talking about it as the roller coast it is.
Some days are great. Some days are not. And the days that just suck don't just suck - they are horrific.
Last week and this weekend I started breaking out in hives for no reason. The doctors think I have Mast Cell Activation Disorder (MCAD) where my body has a histemic reaction for no particular reason - resulting in hives, red spots, and rashes (in my case); in extreme cases it causes anaphylaxis.
Sounds fun, right? By the time I got into work yesterday I couldn't stop itching and scratched the shit out of my shoulder.
When I got home, I had little energy left to do much except take a bath and go to bed. Then I could barely sleep.
Are we having fun yet?
On good days, I can play with my kids, clean the house, cook as much food as I want to, and even meditate. On bad days, I will struggle to get out of bed so I can get to the office (I have to feel supremely awful to stay home). On days like today (and yesterday), I'll wear a hat to work because the lights bother me and I'm fighting a headache that's going on for days. I'm lucky if the slight dizziness doesn't make me vomit at work (it's happened on more than one occasion).
I'm exhausted and the heat in my office isn't helping. I'm not hungry despite trying to eat earlier (that was a bad idea). Starbucks iced black tea is a g-d send for me right now. It's helping to settle my stomach while giving me a caffeine boost that might dull my headache.But it's not all bad. My life is a roller coaster. When it's bad, it's really bad. When it's good, it's really good. My kids keep me sane (sometimes) and they push me to provide for them fully. They push me in a good way (usually) and I find myself happier around them even when I feel sick.
Right now, I feel like I'm collecting medical conditions like some people collect baseball cards. The difference? My medical conditions are insanely expensive. Maintenance means scans, blood draws, scopes, visits to specialists that last about 10-15 minutes a session, and medication. These things are done monthly, quarterly, every six months, yearly, or every two years. I'm constantly being poked and prodded.
Many people are worse off than I am - so please don't view this as me complaining. I'm eternally grateful that my parents and siblings "get it". I have a great support system and my husband should win an award for being amazing. I wish I could clone him and lend him out to others. Not everyone is so lucky. Other patients have told me about their divorces because spouses couldn't handle this; parents who assume their child is making it up or is being lazy despite having doctors tell them otherwise; and bosses who have let them go because they didn't understand how wretched these disorders are.
Again, I'm lucky. I've never missed a deadline - even when I'm at my slowest. I rarely miss work due to being sick (I don't really take sick days) but I will work from home where I work longer and harder without distractions because it's hard for me to be off my couch or because I really need to be situated near a bathroom. Trust me, I'd rather be in my office but what good am I when I feel crummy and I push myself to come in rather than taking time to recover?
Still, I'm grateful. I'm beyond grateful for the good days - probably more appreciative than most. And I'm grateful for having the ability to be more compassionate - these disorders taught me to be kinder to people.
So, if you're reading this and you're in great health - pat yourself on the back because you're doing something right. Keep at it. Even if you've got an invisible illness like mine and you're having a good health day - get excited about it!! Enjoy it.
As for me, this is just another steep hill on the roller coaster that is my life.
