Living with psoriasis

“It's a hundred and six miles to Chicago, we've got a full tank of gas, half a pack of cigarettes, it's dark, and we're wearing sunglasses.”

To paraphrase Jake and Elwood, I’m on a mission from the gods. They were Catholic, I’m a polytheist, so I’ve got more at my back ;)

In my last blog post “Life altering consequences of undiagnosed celiac disease”, I told you how years of misdiagnosis led me to infertility and early menopause. In my lifetime, I have been diagnosed with 4 separate autoimmune diseases. First was psoriasis. I’ve had it since I was born, but I didn’t even know it was autoimmune until 5 or 6 years ago! Which is strange, considering it was known to be autoimmune since the 1960s, and I was born in ’67!

Living with psoriasis when I was a kid was tough. Heading into puberty and my early teens when it was at it’s worst, and I remember being outside in summertime, all covered up because it was embarrassing, and yet sunshine always seemed to help reduce the scales for me. One day in particular sticks out in my head, I think I was in grade 8 at the time (so, 13 years old?), I was playing in a baseball tournament, my Catholic school against one of the public schools. At the time I was Catholic, I’ve since recovered ;) I was standing near the batter’s cage, I’d be up next. I was sweating, and the psoriasis on my head and down my back were itching like crazy! I had my hair up in a ponytail because it was so hot out, and someone said “eeeewwww what’s that rash all over you?!” Kids can be cruel!

Years later when Deep Space 9 was on TV, and I saw Jadzia Dax for the first time, I thought, wow, that’s what my rash used to look like! Yep, it wasn’t far off!

When I was even younger, I remember my doctors telling me to use tar based shampoos, and to bathe in anti-itch stuff. I don’t remember what the bath additive was called now, but it was green, and it smelled funny, and didn’t work even a little bit. Neither did the tar shampoo. And it made my hair frizzy. I certainly don’t need help in that department!

Psoriasis is embarrassing, it’s one of the few autoimmune diseases that is visible to other people. Alopecia, vitiligo, dermatitis herpetiformis, and Reynaud’s Syndrome are just a few. Most autoimmune diseases can’t be seen by the outside world. Celiac, Grave’s, Hashimoto’s, Multiple Sclerosis, Lupus, Sjogren’s, etc etc. People look at someone with psoriasis and immediately think “eeeeewwww, what’s that rash!?”. They don’t want to go near you, they don’t want to touch you, and when you’re a kid, they certainly don’t want to be your friend, because you’ve got cooties, and you’re probably contagious with some strange alien disease.  So not only embarrassing, but also lonely and heartbreaking.

As I got older, the psoriasis migrated off my lower body, and now stays mostly on my scalp. BUT, when you’re a goth chick, flaky scaly scalp on black velvet can be tricky! *snarf* :) Occasionally I still get scales on my elbows, behind my left ear, INSIDE my right ear, and sometimes on my belly, and once, even all over my face for a few weeks, which was painful, and got me a lot of stares. It covered my eyelids and neck mostly. I thought maybe it was Lupus, but by the time I got an appointment with a rheumatologist, it had cleared up again. Damn waitlists for specialists!

My main trigger for psoriasis flare ups is stress. I had A LOT of stress when I was a kid. A LOT! Also, too much alcohol for extended periods of time can cause a flare up. I used to drink a lot when I was a teen, and into my 20s and off and on in my 30s. Recently I went through a few weeks that I was having at least one alcohol drink every day, some days more. I’d come home from work and open a can of cider, or pour a vodka and soda. Weekends, a lot more! It was summertime, and cider is so yummy and refreshing! Couple the alcohol intake with an extremely stressful situation, and BOOM, psoriasis flare. When it started it was so bad that every time I moved my head, I’d have a CLOUD of scales floating around me like Pig Pen on the Charlie Brown cartoons. It was truly horrifying! This is what started me on my recent return to AIP.

I have got psoriasis into remission once before with AIP, so I will do it again. Is it frustrating that it keeps coming back? Absofuckinglutely! I’m learning my physical limits to what my body will tolerate before it revolts and my immune system goes rogue. I’ve read from many sources that autoimmune skin disorders are the most difficult to find relief from. But it IS possible! I know because I’ve done it. At the moment, I still have some scales on my scalp, but the inside of my right ear is no longer clogged up with it, and it is NOWHERE near as bad as it was even just a few weeks ago. So, it is getting better. My hair is still falling out, but no longer at alarming rates. I have a bald spot on the back of my head, hopefully that’ll grow back in. If not…m’eh.

I do sometimes (very rarely!) worry that psoriasis will cause me to also get psoriatic arthritis. As many as 30% or more of people with psoriasis also have psoriatic arthritis. The pro golfer Phil Mikelson has psoriatic arthritis. He had to put his career on hold for a while until he could get it under control. He used a daily injection of an immunosuppresive drug called Enbrel. I’ve seen the commercials, and heard the long list of possible side effects. Because it suppresses your immune system, you become highly susceptible to infection, including tuberculosis. It, and other tumor necrosis factor blockers have been known to cause cancers like lymphoma. For me personally, I would rather deal with the itchy skin, thank you very much! But everyone is different of course, and you and your doctor should make the best decision for you. Please do make an educated decision.

Which brings me back to my mission. I’m on a mission from the gods, to help people with autoimmune disease so they do not have to suffer as I have for my entire life. I have survived everything that’s been thrown at me, and I’ve come out the other side healthier and stronger than ever! I want you to know that you’re not alone. I want to teach you how you too can take back your life from autoimmunity. Whether you just read my blog here, or we work together in my coaching program, whatever that looks like for you. We are all unique, your biology is different than mine, your diseases are different than mine, your health goals are different than mine. What works for me may not work for you. But I can help you figure out what DOES work for you. I’m a pitbull digging a hole…I will keep digging until we find what makes your disease tick. And we will squash it. Howz that for a visual? :D

“And remember, people, that no matter who you are and what you do to live, thrive and survive, there're still some things that makes us all the same. You. Me. Them. Everybody. Everybody.”

Join my mission. Contact me today to set up a one hour free health history consultation.

 

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