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- Dakota’s Story
- Charlie’s Story
An update August 2021 – A little history with new update understanding.
The Psoriasis Odd Couple Story and Video Chats
Dakota (Dak) and Charlie (aka thepain/headless)
Dakota’s Story
DAKOTA’S PERSONAL HISTORY OF PSORIASIS
I was 20 years old. Like many young people in the late 60’s (that’s the 1960’s) I’d stuffed a backpack and headed for Europe. The plan was to go to Spain but I ended up in Paris and fell in love with the city. And the food. And the fact that French people were short. Always being the shortest person in every class in a small town in Northern Canada, this was definitely a bonus!
Toward the end of my two-year stay I noticed some spots on my legs but didn’t pay much attention to them. Just spots. But when I got home to Canada, the spots increased. Then more. And more.
I went to the doctor who sent me to a dermatologist. He said it was psoriasis. Never heard of it. Thought it was just a question of finding the right cream or pill and it would be gone. That was wishful thinking.
I still wore shorts. Well, until a friend I hadn’t seen for several years looked at my legs and asked what it was.
“Psoriasis,” I said.
“Eeewwwh!” she said.–her face twisted into a look of disgust. And that was the end of shorts and skirts for me. I started to hide my body. I didn’t want to ever see that look from anyone again. I was ashamed.
By my late twenties I was hospitalized for a month of intensive treatment. UVB every morning. Coated with tar. Anthralin at night, which stained everything. By the end of that month the psoriasis was pretty much gone—just weird looking blotches of white where the plaques had been. And dark stains from the Anthralin. It took a while for that mess to go away.
And then the years went by, and then they were decades and decades. I tried all kind of remedies. The usual doctor prescribed creams. Painful cortisone injections. I even drove a thousand miles to meet a First Nations healer. And, like many psoriasis sufferers, I fell for some snake oil remedies. Hundreds of dollars led to thousands of dollars. All in the hope of healing this awful disease.
I eventually settled on UVB treatments as the most effective. Once every year I’d be standing in a light box at the clinic. Three times a week. A towel wrapped around my head to avoid damaging the skin on my face. Turning to avoid burning.
After a couple of months the psoriasis would be under control again. And I’d become more social again. Nobody knew I had psoriasis. Not even my closest friends. I couldn’t even say the word. If I didn’t say it, maybe it would lose its grip on my life. I’d found ways to dress to hide the evidence.
But I guess, looking back, there were some positives as well as negatives. The long periods of solitude lead me to reading a lot of novels. And then to writing. And painting. Solitary activities. I avoided beach parties and any kind of event where clothing was skimpy. When “leggings” came into fashion I thought I’d died and gone to heaven.
When I woke up in the morning, the first thing I did was check my skin. Was it getting worse?
How long could I tolerate the plaques, the itching, before I succumbed to more UVB. And would I develop skin cancer as a result of these treatments?
And the worst fear—would it get as bad as it had been, when I was hospitalized those many years before? Always, in the back of my mind, the fear that my psoriasis would become uncontrollable.
And then it did. The spring of 2014 my psoriasis took a turn for the worst. I went back to the clinic for more UVB but this time it didn’t work. In fact, after every treatment the spots and plaques got more inflamed until 90% of my body was covered. To say that I was in a panic would be an understatement.
I was waking up in the middle of the night, so tortured by the itching that I’d be standing in a cool shower in order to get back to sleep. I finally realized that something new was happening. This flare-up was not normal.
It took weeks before I realized that I’d changed my laundry detergent (for a brand that claimed it was 99% natural). This had caused my skin to get inflamed. The UVB was only making things worse. I couldn’t tolerate even a few minutes of sunshine. I was trapped in my apartment.
My dermatologist saw me and said I’d moved from mild/moderate psoriasis to severe. He said we’d have to consider more intense treatment. Methotrexate. A chemo drug. Now I was scared. Would I be one of the people whose liver was adversely affected by it? I went home, defeated, to make my decision about the next step.
And that’s when I started scouring the Internet and found the National Psoriasis Foundation discussion groups (Inspire). And a thread (discussion) called “Real Hope!!” by Flintchick. I ordered the supplements she was taking and had them UPS’d to my apartment. I sat at my window for two days, waiting anxiously for their arrival. When they finally arrived I couldn’t get the first supplements down my throat fast enough.
Four days later I was looking in the mirror and doing my best not to be too hopeful. But I couldn’t deny that there was something radical happening. My skin (previously so inflamed that my neighbor wanted to take me to Emergency) was calming down. By two weeks there was no escaping the fact that my spots were vanishing at an alarming rate.
At week 5 I went back to see my dermatologist and his eyes got wide and his jaw dropped and all he said was “wow!!!” By the end of the sixth week I DID NOT HAVE ONE SPOT OF PSORIASIS ON MY BODY!
Today, July 1, (Canada Day!) 2015, I have been 274 days free from psoriasis. That’s over 9 months!!!
Now, I wake up in the morning and the first thing I look at is my little dog, Lucky, (not my skin). I’ve bought my first pair of shorts in decades. I go to the public swimming pool and no longer watch to see if people are looking at my legs and recoiling.
And I’ve learned that “There’s Something About Dairy”. If I consume even a little, I get a few tiny spots. They clear up quickly but they are the red flag. (See the updates on the role calcium plays in psoriasis!).
And every day feels like a miracle. Will it last? I don’t know for sure but I’m optimistic that it will. I’ve seen too much evidence from people who’ve tried this protocol and who’ve had success. Not everyone healed as quickly as I did—but those who stuck with it (and did the complete protocol) got results.
So now I’m onto a new and exciting stage of my battle with psoriasis. I was given a gift–freedom from psoriasis. And it is a gift that is worth passing on to others who are suffering from this incurable disease.
At the age of 68 I’ve found something truly worthwhile to do with what was “supposed” to be my retirement.
I want my final word, on my deathbed, to be:
“We beat the demon psoriasis!!!”
Dakota, July 2015
Charlie’s Story
NOTE: Sadly, my buddy and cohort, Charlie, passed away from cancer in 2021. He was a unique human being—a man who was a real inspiration to so many who suffered from this disease called psoriasis. Go to “Blog” where you can read the post written in his honour. https://freedomfrompsoriasis.com/r-i-p-charlie-aka-the-pain/
As I remember I started with psoriasis when I was about 20 years old. It started on my lower shins as a dry rubbed looking area. I had attributed it to working on a ladder, thinking that it was rubbing on the same area all the time, and I did not really concern myself with it. Shortly after noticing this, maybe 2-weeks.
It had the same look on my knees, elbows, and stomach. It started getting really inflamed, flaking tremendously and the Itch! …oh the Itch. I thought I had cancer and did not want to go through the life struggle that I thought I was in for. This went on UN-noticed by anyone (I kept it hid) for about a year.
Finally I went to a dermatologist. As soon as he saw my condition, his rubber gloves went on!. I got the bad news that I had Psoriasis–Severe Psoriasis in his words. But not cancer ….(Yet)…. the Doctor advised me that I have a high risk of getting skin cancer because of the severity of the Psoriasis and that there is family history of melanoma, so the long process of trying all the drugs to see what would work was on. As many of You well know, like most I had tried everything I could get my hands on that was not Prescription. Well, it was no better with prescription drugs, in fact I ended up in the hospital once getting pneumonia from an over taxed immune system that was getting worse from using Enbrel.
Don’t get me wrong! I think medications work for some, but the side effects, for many, are as bad as the disease from my experience.
I was taken off of all medications because nothing was working, and my Insurance was not covering most of the medications I was taking. My doctor even said that he really did not have anything else to try, and that maybe including a tanning bed might help. I bought one! Didn’t help. I worked outside all the time and got plenty of direct sun (had a Tan that was like a movie star) but it had no effect.
Screw it! I gave up! I just decided that I will have to accept the fact that I will never get better, so on I went, still trying some things that were soothing for that super short term relief of the Itch!
The flake peeling never did stop. It became an every day ritual, picking and peeling until it was bloody and as red as Rudolf’s nose. …..ahhh! Relief again for a few hours.
The piles of dead skin that would be sucked up in the vacuum cleaner from the carpet gave me an Idea. I ripped out all the carpet and put down hardwood flooring to make cleaning up easier and quicker, and seeing piles of skin pushed up by the dust mop daily! was just the norm.
I had stopped most of my social life, except for a select few. The embarrassment from comments overheard or the stares I would get in public were too much for me to deal with. I was growing into a complete recluse.
No fishing! (that I love) No Hunting. No going out to dinner. Only going shopping for food when I absolutely had to. This is what I had become! A turtle in a shell, only coming out for food.
My parents passed away shortly after one another and I had received some insurance money that enabled me to purchase some land next to my place that included a pond. (yea! Fishing without going out in public!) When I would go work on the pond, I was inundated with Mosquitoes. It’s one thing to itch from psoriasis, but to amp it up with mosquitoes, was absolute torture (Torch-er).
While having a beer break with one of my only buddies one day, I noticed he was not getting eaten alive like I was by the mosquitoes.
“WHY? What are you using?” I asked.
He told me he had been taking magnesium (orally).
Well, I am quick to research it on the internet, and find little to no information about this claim. But one small article that I remembered reading talked about using magnesium as an Oil and spraying it on. Well I found info explaining how to make the oil from magnesium. I had some Ice Melt that was magnesium, so that is what I used , spraying it on my clothing and any exposed areas…..WHAAA HOOO!
It worked!
A couple of weeks into doing this every day I noticed my psoriasis on my arms was improving!
What the Hell! ….I have never had improvement of my Psoriasis in over 30yrs. Could this stuff be causing the improvement? …..well I had to find out.
I stripped down and sprayed my whole body. Son Of a Bitch!!!! I was on Fire!!!! Everything was burning….. I was dancing around for a good half hour wondering what I had just done to myself. I figure I’ll be sterile when this Burn stops …. if it ever does. You see, I also have Inverse Psoriasis in my crotch area that is extremely sensitive.
Well, the burning finally stopped, and being the way I am, I just figured no Pain no Gain so I continued this every day.
My Psoriasis was going through some kind of change–drying out with less inflammation, less flaking. It was improving! …. the more I used it the less I burned and the better my skin got.
So I continued for about a month …..the progress was now very apparent…. even family members were impressed, …… did I find the Cure…..I Thought I had! …… I am, by choice, a very non-caring of my fellow people type of person, but I would not wish psoriasis on my worse enemy, because of the life long suffering and lifestyle changes it causes. …….I must ….I feel …. like I need to tell and share this new found Cure with All Psoriasis suffers. Maybe, just maybe, I can help out a few people in this world and get some of this Karma I seem to have Reversed …..just a little anyway.
So I found the Inspire web site and took the name (thepain), Fitting for what I have been through. And I started a post called (Something That Really Works). After getting several responses from others also getting significant results, I was Pumped ……I was now on a quest to help others…..it felt GOOD, not like me at all …..but I was helping others.
One day I got slapped up side the head by posting in some lady’s post accusing me of Hijacking her thread. That would be who I call THE QUEEN! Dakota. Her own thread (“…and his jaw dropped!!!” ) was tremendously successful too. After a while we became mutual friends, fighting a mutual cause–a joint effort (thanks to dakota) to help others by following a really pretty simple protocol that (Really Works!!!)
I am almost a year in to doing this protocol ….and I now, for the first time in my life, have control of my Psoriasis ….at least what is left of it.
Charlie, July 2015
Hi Dakota and Charlie! Is “this” how I ask you a question???
Snax
Hi, Nancy: It appears to be the way to do it. I’m still learning the ropes. Anyway, hope this message gets to you!