Some of you have probably noticed I’ve talked about my struggle with arthritis on this blog, but not so much about my psoriasis. Psoriatic Arthritis is, in fact, a combination of both arthritis and psoriasis. Sometimes I feel like those of us who have psoriatic arthritis got a bonus with our arthritis. Score… psoriasis too, YES!
Okay, I’m being totally sarcastic.
Truthfully, I’ve been trying to work up the nerve to write about my psoriasis. Who really wants to openly admit they have a “rash” on the back of their head and wakes up to find blood stains on their pillow? I don’t. I have a hard time talking about it sometimes, depending on the circumstances, but I’m going to write about it anyways in the hopes of raising awareness for other psoriasis sufferers who have it worse than I do.
I don’t consider myself lucky – I consider myself blessed. I am blessed to have the majority of my psoriasis on my scalp. Others have it on other visible areas of their body – face, neck, arms, legs, etc… The general public can be so discriminating to these people for fear of catching an unknown contagious disease.
Just so you all know, psoriasis is NOT, I repeat, NOT contagious.
A friend told me once about her daughter, who is in her early 20’s, and without medication can have about 80% of her body covered in psoriasis. They were shopping at a very well known clothing store and the daughter decided to buy something. The sales clerk went out of her way to tell the daughter that normal policy didn’t apply to her and she would NOT be able to return any of her items. Ouch.
If you have a question about someone, please ask them. 9 times out of 10, that person probably won’t mind you asking the question.
I really don’t mind answering questions about my psoriasis when people ask me about it. It’s just an honest question looking for an honest answer. Normally, people are concerned and want to know, “Megan, what in the world did you do to the back of your head?!”
My psoriasis first made its appearance on my scalp when I was 14. I had just started high school and was the normal teenage girl I suppose. Other itchy rashes also started appearing on the rest of my body. Living in a small town like Kodiak, Alaska, the doctors didn’t know what it was. They ran blood tests, did a biopsy, and still couldn’t tell my mother what was going on with me. I was prescribed some sort of topical liquid and cream steroids. Mom would rub them in to my head every night before I went to bed. They stung my open sores.
It wasn’t until we moved to Anchorage in 1998 that I would be told I had eczema. Little did we know at that time it was a misdiagnosis. It wasn’t until I saw a Rheumatologist in 2009 I was actually diagnosed correctly.
High school kids can be so mean and I was very insecure back then. I had really long hair and I used to hide behind it. Everyone always asked me why I didn’t wear my hair up or in a pony tail. Truth is I didn’t want to, because why would the kid sitting in the desk behind me want to stare at a bloody, scaly mess? I didn’t want them to stare, I didn’t want them to gossip, and I didn’t want to be embarrassed. So I always wore my hair down.
Now, I don’t care. My hair is short and the back of my head (where my psoriasis patch is currently) is shaved.
My psoriasis on the back of my head used to be really bad. Thankfully, the diet I am on has helped control my psoriasis TREMENDOUSLY. I only use a topical steroid cream if I’m having a flare up and generally the only time I have a psoriasis flare up is after I have some sort of cane sugar. In general, I’ve cut all cane sugar out of my diet. Although, once in a great while I have some. Like my birthday. Namaste Foods makes an awesome brownie mix that’s gluten, wheat, potato, and corn free. The one drawback is they use evaporate cane sugar as their sweetener. Hence the flare up shortly after my birthday.
So, there you have it. It’s a blunt end, but that’s my dreaded psoriasis story. I hope that putting this into words has helped someone out there in blog land.
To learn more about psoriasis, check out the National Psoriasis Foundation.
Hi Megan: I saw your post on the NPF site and read your story – best of luck – we run a website http:\www.phototherapystore.com and our patients tell us of similar stories to yours – you are certainly not alone – I hope that your psoriasis is in check.
Megan- have you looked into yeast overgrowth at all? When I was researching it for Rylee, psoriasis came up a lot, especially in The Yeast Connection. You should look into it if you haven't already.
Thanks, Breanna. My psoriasis is in check right now, unfortunately it's the arthritis that's giving me fits. Yeast doesn't seem to bother my psoriasis. It's cane sugar that gets me. You know I should get your email address so we can trade emails or are you on facebook at all?
Hi Megan, I stumbled to this site in hopes of helping my children with the psoriasis. I have done the creams, prescriptions etc. Any info you could give me would be appreciated. My oldest has it the worst, elbows, knees, scalp!!! THe rest are mostly scalp. I want to keep them from the embarrasment they feel every time the flakes are on their shirts People can be so MEAN… If diet is the answer, I would do whatever it took… Thanks Beautiful site by the way!!! good luck with your cook book … Donna New Jersey 🙂
Donna!! Thank you so much for your nice comments! 🙂 I'd be happy to trade emails/info with you. My email is [email protected]. Megan
I have to tell you that I love your hair. Love the highlights! And you have your head shaved where you have psoriasis. You go, girl! Awesome. Our symptoms are so similar. Started in my foot as well. I have crazy sausage toes now. Now my other foot has come under attack a year and a half later. My achilles tendon on rt. foot is a killer! And my thumb too! But these are just the joints that top my list.
Megan @ MAID in Alaska says
Thanks, Kelli!! I decided to grow my hair out again (my husband loves my hair long). It's in the in-between stage now… Gotta love sausage toes!! LOL!! Fat feet are totally going to be the new fad. ;p
Personally, I love the rants! I just started my own food blog, no particular restrictive diet, just things I really like that won’t make me feel sick (and some things that my family love), and the 2nd, private blog where I can have my own rants. I do have psoriasis, on my feet, along with some joint pain. The joint pain, is often much worse than the psoriasis, which is pretty mild, relatively. Adding a large green juice for a week or two each month has helped reduce the swelling in my feet, and the overall joint pain…and the fatigue, foggy head. Right now, I’m in an upswing, actually ran for 10 minutes on thursday for the first time in 14 months! It was great, until my toes went numb. 🙂
Thanks for sharing this! I have had psoriasis for 42 years, and it’s still a pain. Funny thing is when I stopped sugar for a year, it went away… but I could only last a year. I wonder if cane sugar triggers mine… that’s the kind of sugar I use. Thanks for sharing again. There are a lot of us out there. And yes, the arthritis with it is ugly.