I have a panic attack every other Friday morning at approximately 7:00 a.m. It’s short lived, about 60 seconds. Here’s why:
You might be asking yourself what this is that I’m holding. It’s a pen syringe containing a life-saving medication used to treat ulcerative colitis (UC), among other medical conditions. I was diagnosed with UC, an autoimmune condition, four years ago. After a terrible flare in spring of last year, I ended up in the hospital unable to stop the amount of blood and mucus I was expelling. I became anemic, dehydrated, nutritionally deficient and generally hated my life for a period of months because of this disease.
Before I was hospitalized, I had been on oral medication that worked well for a time. I had my first flare of symptoms return a couple of years ago, which were treated with steroids. I won’t bore you with my treatment protocols, but long story short I did what they call “step therapy.” Just like a pyramid, by the time I was hospitalized I had reached the top of the options list and had to go on this biologic medication. It’s some serious s&h#.
Hyperhidrosis and Needle Safety
I have to self-inject twice per month. The first time I received the medication it was a large dose – four injections – and then it tapered down to one injection every other week. Those first four I had to have a nurse do for me. Now I can do it myself, but each time I have to psych myself up while simultaneously try not to psych myself out.
Just thinking about injecting gets my sweating going. I have to wash my hands several times under ice cold water to help cool them down. Then, I rub the alcohol swab over my stomach two inches away from my belly button, making sure to rotate the injection site each time I dose. Once the alcohol is dry, I take a clean kitchen towel and use it to pinch my skin in my left hand. Ever try holding your stomach skin with wet hands? It’s near impossible.
With my right hand, I’ve already removed the lids on each end of the pen. I grasp it firmly, place the needle end on my stomach and push the top of the pen. As it makes a deafening click, I hold my breath for the next 10 seconds until I hear the sound of the syringe being emptied.
Once the injection is complete, I lean back in my chair and take a deep breath, thankful that I’ve managed to inject without the syringe slipping from my sweat-ladled hand. If it were to slip, I’d lose a precious dose of medication that keeps my body functioning.
There is no backup plan. I’d have to call my pharmacy and wait for another replacement dose to be drop shipped, delaying my dose as I watch the half-life of the previous dose I injected slowly wane.
Why This Matters
We need better (and more) treatment options for hyperhidrosis. This isn’t just Oh, I have an annoying sweating problem and wish it would stop. There are serious medical problems and risks associated with having hyperhidrosis, as I’ve just explained above.
So what do we do? We MUST share our stories and raise awareness about a condition that can be socially, emotionally, professionally and medically debilitating. Some days I consider it a downright disability.
My goal is to share my story with the FDA and lobby Congress for more clinical trials and research funding.
Hyperhidrosis affects 367 million people. That’s 5% of the global population. Think you’re alone? Think again. The FDA needs to become more aware of the excessive sweating epidemic.
So, if you happen to think of me on Friday mornings around 7:00 a.m. Mountain Time, please send me some good vibes for a dry injection. My next dose is July 14, which also means I will be traveling with my syringe and dealing with airport security and extra screening. Yeehaw.
Also, this is not the first time I’ve talked about my butt (see #4), so there you go. #Brave
What about you? Are any of my sweaty friends out there also dealing with another medical condition concurrently where it becomes a safety problem having HH? Insulin-dependent diabetics, anaphylaxis, multiple sclerosis, arthritis, etc.? Please share your story in the comments below. I will take them with me to the FDA.