So I started my meds Friday, like a good patient. By Sunday, I was running to the bathroom just to run my hands under cold water to stop feeling the itch. By Monday? I had an eruption of blisters on both hands to the point that made them completely unusable for work. As each day went on, more blister clusters would show up. Then they started to go down my arms, on my torso, and the top of my thighs. I could only sleep if I had ice packs on my hands to numb the itch. My PCP added Hydroxyzine to the mix, but the blisters kept coming. Is not only were the meds not stopping the massive flare, but I can only guess at what the trigger was this time so I don’t actually know what to avoid.

I haven’t eaten any new foods. It has been warmer than usual here, so maybe it was the high humidity and heat of outside? I got some plants from a friend a few days before the flare started, but nothing I’ve not handled before. Was it the soil? Was it the canna lilies? Was it the mexican petunias? Was it the papyrus? Was it just the fact I was sweating? Was it the pennywort I was pulling up? Did it have nothing to do with the new plants? Was it stress from being busier than normal at work? Was it one of the soaps we just got in at work? I honestly don’t know for sure. I’ve assumed it has to do with the gardening at this point because it is something I can act on. I can wear fabric gardening gloves and just choose not to actively participate in gardening….as much as that’s a heavy blow to my soul.

But That’s Not All Folks!

All of that is incredibly frustrating. But that’s not the whole of the story either. Because while this is going on, I don’t feel sick. I’m not running a fever. I’m not vomiting. I’m not delirious. I’m not overly tired (except for now I’m on Benadryl instead of the hydroxyzine, so I’ve only got moments of functionality in between doses).

Despite that, I can’t wash my hair on my own because the pressure on my hands sets the itching and pain in the blisters off. Showering at all is….uncomfortable. It’s got to be cool water, and I can’t stay in there long but it also is hard to hold anything to scrub with. Even getting dressed isn’t something I can do easily because bra’s are terrible to try and put on with hands that aren’t functioning well.

And of course stress makes any mast cell flare worse, so you’re not supposed to stress about all these things while the mast cells are attacking your own system FOR NO GOOD REASON.

Okay…so…the reason is that I’ve got Ehlers-Danlos and it often comes with Mast Cell Activation Syndrome and that means that the mast cells get over ambitious after being triggered and start attacking healthy tissue because that’s how auto-immune disorders work. I know this. But I still don’t consider that a GOOD reason for this nonsense.

Add to this mix that it’s difficult to find a doctor that is easy to get an appointment with during a flare AND knows about mast cell diseases? I am lucky to have friends that are knowledgeable as well as doctors that are willing to listen to me when I suggest something. But they aren’t specialists with mast cell issues, so as amazing as they are, they’re shooting in the dark a bit as well. The last time I had a massive flare like this? I was sent to a dermatologist that was supposed to be the top of her game. She looked at me and told me it was poison ivy and that she could tell I don’t have mast cell issues by looking at it, then proceeded to insult the rest of my team and tell me I just wanted to be special and needed to accept it was just run of the mill poison ivy. It wasn’t poison ivy. Despite the fact I react to the most benign things…I don’t react to poison ivy, and wasn’t around it anyway. Despite the fact I had a steroid injection that should have helped a poison ivy rash go down…and it did nothing. Despite the fact none of the blisters were weeping or anything like a poison ivy rash. Which just adds to the mountain of stress as you’re just trying to find some relief and get back to a life.

You Are Not Your Productivity

And this last one, is the fight against my own mind. That because I don’t feel like I’m on death’s door…I should be more productive. I should be able to work. That falling asleep because of taking Benadryl is somehow a sign of weakness. That I’m letting everyone down by being in the middle of a flare and not knowing exactly what caused it and how to fix it immediately. Like I’m somehow a failure for this.

Yet, in a small moment of clarity, I recall a recent interaction. I met a wonderful woman at work that was wheelchair bound. She was telling me all the things she used to do before her failing health stripped it from her. I shared a bit of my own story and things I’ve lost. She looked at me with tears in her eyes, and asked if I ever feel like a terrible burden and useless. That if she couldn’t do things she loved and make gifts to bring smiles to people, what good was she anyway? That if she had to rely on her husband to do everything for her, wasn’t she just a burden that he’d be better off without? (Now, her husband was also shaking his head and giving her the stink eye during this, bless him. And you could feel the love from him)

I had told her, fully believing it, that she wasn’t worthless. She made my day. She still touched the lives of people, and that mattered. People she made things for in the past, I’m sure still look back and are touched. The fact that she touched so many lives is incredible. So just because she’s not doing the same things she used to, she was still a bright light that was needed in the world.

I’m not one to say that the universe has everything planned, but I think we needed each other. Because as I’m facing all of the frustration from my mast cells not being able to fully calm down from a tantrum, and feeling utterly useless…I remember this shining light of a woman. I still have to fight my mind, because it’s an ingrained thing that I’ve had beaten into my head. But it has helped.

But What About Solutions?

Well…I’m just now, over a week later, looking like I’m turning a corner with a shift in my medicines. I’ve also been in contact with a company that is run by an incredible couple called Dirty Unicorn about making a hand salve for me that may be better than the bar lotion I have currently. I’ve just ordered some soap from them because I love the scents they use.

I let my cat cuddle me and act like a fuzzy nurse. Just having him around to pet, feeling his weight against me, is soothing.

I talk to friends that have an understanding of what I’m going through. We talk about the problem, touch base, and then have a conversation unrelated to medical things.

I keep my primary care doctor informed of the progress or lack thereof as well as any changes I’ve done myself.

I have alarms set on my phone so I make sure to take my medicines on time and so they are apart enough to not interact with each other.

I put on meditations to help me rest. Even if the meds are making me sleep, they help my mind go to a better place while drifting off rather than focusing on the depression downward spiral.

I let my other half help me with tasks that I’d rather be able to do myself.

I try my best to be kind to myself, and reach out to friends that can give me a mental slap if I need it. Because this is stressful enough without my own mind making it worse.

I don’t respond to calls or texts unless I feel up to it, even if I can do speech to text. Because I wouldn’t ask anyone to stress themselves out and make their flare start back up, I won’t let anyone else do it to me.

And I just try to do whatever I can in the moment. Because there’s no way around it…the situation sucks. It’s horrible itchy, incredibly painful, and utterly miserable. I accept there’s nothing I can do to make the situation not suck. But that doesn’t mean I have to beat myself up over it at the same time.

I take the time to speech to text something like this just in case it reaches someone that needs to hear they’re not alone.

Also….I made some memes out of spite…because if you can’t make it better…make fun of your situation and spread the dark humor.