I have been the victim of a skin disease known as ‘psoriasis’, which I am dealing with for last 20 years. Psoriasis is a skin disease that causes itchy sore patches of thick, red dry (dead) skin scales. I was around 19 when it first appeared. What a dread it was! Besides its physical appearance, it had brought in so much of internal negativity back then to me, a young man trying to make sense of the world. I have psoriasis covering over 70% of my body at present. The only thing that has kept my sanity is that the problem is not very prominent in my face, so people do not notice at all. I am going to share with you how my journey has come about up until now, and how I got better at dealing with it. Yes, I say dealing with it, as there is no cure.
The starting
I was scratching over a small lump in my scalp right above my forehead. The lump had remained there since my childhood injury while playing with my younger brother, when my head had crashed on the sharp edge of my grandmother’s metal bed. I vaguely remember blood coming out of that lump after scratching and cleaning the wound that night before going to bed. Next morning, when I went to the bathroom, in absolute shock and despair, I saw the skin of my face, from forehead, eyebrows, and nose, was a bloody translucent red. The next two days, I did not go out of the house, hoping it would clear by itself. But, it did not. I had to put on a brave face to go out of the house, of course, not without covering my face with a scarf and a cap.
I went to the doctor, who did a skin biopsy, which confirmed that I was in early onset of psoriasis—some unknown DNA malfunction triggering my immune system to make my skin cell go into hyper production and destruction. Of all the organs in our body, skin happens to be the largest and very sensitive organ. So, this internal conflict within my immune system, medically referred to as “autoimmune disease”, was attacking my normal skin cells as foreign agent (antigens).
Right around that time, I also suffered another kind of autoimmune-triggered condition called “cold induced urticaria”, in which the body’s intolerance to cold stimulus caused my skin to turn red, followed by swelling of skin with itchy hives. In my case, I would get it in any exposed (not covered) part of my body. It could be caused by the cold air around, or cold water in contact, and most dangerous was when I drank a little too much of icy drinks, causing the skin around by throat area to tighten and swell. This condition led me to do different allergy tests, including thyroid function test for the first time in 1999. Soon after, I was advised to start taking thyroid hormone pill for life, due to hypothyroidism. As for the cold urticaria, I started taking antihistamine pills every day. So, at age 19, I was pretty much occupied with dealing with different health issues that were not curable, but rather, only manageable. I was busy managing an inventory of different medicines that started filling quite a space in my room and bathroom.
As for psoriasis, I used tropical treatment of different steroid creams/ointments containing coal tar and salicylic acid. At first, salicylic acid did control the fresh flare up of psoriasis, I was happy. But, the progress did not even last a few days without using steroids. The worst part of it was that, I was told not to get exposed to the sun, stop drinking, and even eating meat, all of which were my favorite things to enjoy. I was over-sensitive to all this, and to make matters worse, I was having to deal with people all the time, curious about my face, and even assuring them that it was not contagious. I was having low self esteem due to the physical appearance, which I believe invited self-caused mental stress and bringing in periods of depressive episodes. Stress just fuels autoimmune diseases even more.
After about 10 years of managing psoriasis on my scalp and forehead, it started appearing everywhere in my body. During this whole time, I went to several dermatologists, from old established names to the new ones; without naming them, I can still remember eight names. Most doctors recommended similar course of action when it came to psoriasis—steroid creams, coal tar and salicylic acid-based shampoo, and a few rounds of methotrexate, along with phototherapy (PUVA). At one point, cyclosporine completely made it go for two-three weeks. Fortunately / unfortunately, we do not have biologics, which is the latest in allopathic drugs being used everywhere, except in Nepal. I say fortunately, because when it comes to biologic drugs, from what I read, they are highly patented by a few multinational drug companies which have monopolistic distribution, thus leading to medicines being expensive. Many in the Western countries would not be able to have this without a health insurance cover. Besides, biologics have their own set of side effects and risk to one’s health. Nonetheless, of all the different biologics, one that seems to be most effective is called Cosentyx, which is made by Novartis.
My current approach
I have stopped almost completely going to dermatologists. I have not been to one in the last two years. I am currently taking a homeopathy course of treatment. I have finally found the right doctor who strictly follows classical homeopathy. Please note I have in the past been to eight different homeopathy doctors here in Nepal and in India. I have also tried Ayurvedic treatment, but have not completely followed through the course of treatment due to my lifestyle. I have also been to different spiritual healers and three natural hot springs baths in different places in Nepal.
Having lived with psoriasis for 20 year, dealing with all the crisis management, all the stress and sacrifices made, I am still hopeful that I will transform to, yet again, a different self as the journey continues. Part of ongoing work is listed below:
- I still catch up on my regular online psoriasis groups on Facebook and YouTube and there are so many other good online resources.
- Try as much of natural treatment as I can.
- Diet change, it is not something that I have not been able to give continuity to. Still balancing the acidic diet with more alkaline diet.
- Hydrate as much as possible.
- Get sunbath between 10 am -11 am.
- Yoga and meditation.
- I moisturize entire body daily. I use Himalaya baby massage oil and coconut oil in summer.
- Most importantly, I accept psoriasis as any part of my own body.
- I always remain positive.
Because of psoriasis I have had the chance to try out and give up so much that life has to offer. It has taken me to many new places. Life is an adventure, whether you are healthy or have health problems. I just want to make life just more adventurous. Talking about adventurous, I have survived high altitude sickness, and only last year, survived hypothermia. That is a whole other story.