Getting an Upgrade to My Diagnosis
Upgrades are usually welcomed in life. I not-so-patiently await the announcement of the newest iPhone each year and covet each shiny Playstation that is released. But what about when you get an additional type of psoriasis to your diagnosis? Not so exciting…
New type? I can wait to get my hands on it!
It all started with my latest clinical trial appointment. I have been on my mystery oral medication for a few months now, and the results are a shrug. There is clearing in some places, but not in others. I’m not completely covered anymore, but I’m still pretty textured. Once they got to my hands she asked about the large spot on the inside of my finger. I told her it had come on with the cold weather and seems to be growing. I didn’t think much of it, because getting new spots is nothing new to me. To my surprise, she said it appears I may be developing palmoplantar psoriasis. The doc said we would keep an eye on it, but all signs are pointing to this new-to-me type of psoriasis.
Hands and feet are hard to treat
I didn’t think much of it during the appointment. I would have three out of the five types of psoriasis, and I was glad that it wasn’t pustular or erythrodermic. But that is what we do, isn’t it? We compare our disease to others and say it isn’t “that bad” or that “it could be worse”. The fact is that psoriasis on my hands and possibly my feet could mean big disruptions to my life. It’s well known in the psoriasis community that for some reason the psoriasis on these areas of the body are notoriously stubborn. They don’t respond to treatments as well as the rest of the body and often require a combination therapy.
The other side of it is that having painful lesions on your hands and feet can make daily tasks exponentially more difficult. I only have one large patch now and I already feel the sting of pain when I use a public bathroom sink that doesn’t have gentle soap. Since it is on a joint, whenever I go to grab something the skin cracks. Because it is cracked, I have to be careful what I touch since the patch now doubles as a wide open door to germs. If I later develop it on my feet that could impair my walking, which would jeopardize my work and ability to play with my kids. Suddenly I was reminded again what a serious disease this is.
A diagnosis with no return policy
I’ve lived most of my life with two chronic illnesses, but it’s still hard to come to terms with the fact that I will have another layer to my disease that will follow me around the rest of my life. My fingers are crossed (gently) that it doesn’t develop further, but I also know it’s part of this journey. Until a cure is found, the possibility of my disease worsening is always looming. I could dwell on it, but instead, I have taken some time to process and am moving forward with what I can control. I don’t know what the future will hold, so I am choosing to not get down about it. Instead, I am using my hands and feet as much as I can and never taking them for granted again.
How often do you experience brain fog?