My Other Other Disease

Unlike the campaign for Pork (‘the other white meat’), I would never suggest you acquire another chronic condition if you already have cancer. Or actually eat pork since I’m vegan. Maybe that was a bad analogy…

Anyhow, I went into cancer with another disease already in place. My name is Karyn and I have Psoriasis, another fickle ogre of a disease. Mine is minor compared to some. It has various forms, varying degrees of severity creating various levels of disability, and it’s ever changing – occasionally carrying with it new ailments to attack the body or becoming resistant to treatment.

Like cancer, Psoriasis needs constant attention to keep it under control. It can become resistant to treatments. It can affect your mobility. It can land you in a hospital bed. It can create anxiety, pain, and depression. It can spread to new areas of your body. It can create associated health issues. Psoriasis can trigger Psoriatic Arthritis. It has a relationship with heart disease, diabetes, and depression. Medication used to control severe cases carry multiple risks which have to be weighed, just like cancer treatments.

Psoriasis has no cure. Cancer has no cure. There are multiple research projects to determine the cause(s) and develop new treatment options, just like cancer. There are theories about what triggers it – aside from genetics. Common triggers are viral infections, stress, injury, and some medications.

There are six different forms of Psoriasis. It can attack a small area of your skin or your entire epidermis. It can be annoying or extremely painful, leaving you desperate for relief. Each psoriasis patient can have multiple forms of the disease, though it’s usually limited to one. Psoriasis is not contagious, though people often think it is because of the appearance.

With Psoriasis, you have to hit it with big treatment, then taper it off for maintenance. At least until that strategy stops working. Then you start all over again. Because Psoriasis is so fickle, it requires a constant rotation of drugs, ointments, soaps, lotions, shampoos and experimental dietary changes. I can almost guarantee that every Psoriasis patient has a small in-home pharmacy made up of rotating treatment options.

Unlike most cancers, Psoriasis is a visible disease. It can freak people out and cause them to worry about what you might give them if they touch you. It makes getting a haircut an anxious experience. Massages are out of the question for most sufferers. It changes the way we dress. It creates social anxiety. It prevents us from getting jobs where we’re interacting face to face with the public. Even if it’s debilitating, insurance companies deny coverage of medications. We are denied disability even if we’re confined to a wheelchair or spend days in a hospital each month. We can feel isolated, alone, and depressed.

Ironically, chemotherapy can offer respite. Psoriasis is an auto-immune disorder. Chemotherapy attacks the immune system. Because of the impact chemotherapy has, some Psoriasis sufferers are now taking chemo to get that relief. Can you imagine someone without cancer CHOOSING to take chemo? Well, that may give you some idea of how badly they’re suffering.

As I said, my Psoriasis is mild – largely limited to my scalp. It’s always been more annoying than anything else. But so many people experience the worst of what I’ve described above and it’s more than annoying. Mine disappeared while I was on chemo, so I understand the appeal of that treatment route, side effects and all. The risks associated with other biologic treatments are not worth it for me and my doctor would never offer it as an option. If my Psoriasis was life altering, I’d probably change my mind about adding another pill to my treatment rotation.

Want to know more? Visit the National Psoriasis Foundation.

I finished this post and then realized I wrote one similar to it in May of 2013. Thanks Memory. Well, maybe my new readers will appreciate it since they won’t have to go digging through my archives.

One thought on “My Other Other Disease

  1. hi karyn
    thanks so much for your message about psoriasis. i am really struggling with my psoriasis. its on my back, in my ears, on my face and all over my scalp. you are so right, i have so many different medications in my cabinet ! i am also concerned about taking a biologic med, as there are so many risks. i have been going to Stanford for tx for my psoriasis and other skin cancer issues (multiple melanomas). and ive been seeing Dr. carolyn Lee and i now see her at the cancer center in PA.
    the only thing that has been helpful is dermasmooth or fluocinolone acetonide topical oil tx that i use on my scalp. and i leave it on for 3 days, and then wash my hair and i usually have 1 day that is flake free. then the process starts all over. i have also tried xtrac therapy which did not help. i just tried to renew my RX for the fluocinolone and discovered that when i got it last time, it was $5.00 bucks, and now it is $250.00. !!! so im trying to find an alternative, or get my dr to write a letter. i am on disability for my back injury so paying that much is really out of my reach.
    i met you a while ago at lauras house, and have been a friend of lauras for a long time. we used to work together as therapists in los gatos.
    i used to pet sit for them, as well as take care of rex and leah occasionally. my name is kimberly horton. ive been following your everydayleft messages for a while. you are such a good writer and always have something interesting to say.
    any ways, i wanted to respond to this message, as it meant alot to me. i was wondering if the chemo cleared your psoriasis up ! and yes, just getting a haircut is traumatizing. you can contact me any time if you wish.
    kimberly

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