Recovery Blvd, Milemarker 1: Psoriasis Rd.

Hello, and Happy Spring!

This journey to healing is what I plan to begin posting in an effort to see if others have had a similar journey. I’ve constructed a few ‘pillars’ in my journey to improving my health that I will reference as decision points or “milemarkers” where I made a turn on Recovery Blvd – six to be exact: Psoriasis Road, Gut Service Road & the Gut Health Highway, Depression/Anxiety Lane, Thyroid Street, Joints Turnpike, Highway to Obesity, and Longevity Drive. (The actual healing journey that I am taking is separately documented using a daily journal and will be published at some point.)

Now, when you hear the term “psoriasis”, what comes to mind for you? Used to be that, for me, psoriasis is what people got in their hair. Dandruff. Purchase the appropriate hair shampoo and you are cured. When my psoriasis appeared as a little spot the size of an ingrown hair on my left leg, my inclination was to slap some cream on my really dry skin, quit whining, and move on with life. As you can see, the little red dot on my leg has turned into quite the situation.

My first ‘milemarker’ in my journey is healing my psoriasis. This process is the most confusing and is driving my trip to Longevity Drive. The realization that that this part of my journey is to be a major cornerstone for my own longevity and bright future rests well with me for it is my main obtacle to overcome. I’d like to also help others with similar situations with is why I’m taking my time to really sort this out. I have found that my focus needs to be on improving my health and not just ‘losing weight’. This is the first photo I took of my legs (red sock). I sent the photo to my mom to have her see what I kept referring to as my dry legs. This was after over 10 years of trying to get rid of the lesions. It is a very slow moving disease with me.

Yes, my psoriasis began – or so I thought – with the appearance of a small and barely noticeable lesion that would not heal. Determined I had skin cancer, I made the first of what would be rounds of dermatology appointments. However, later in my journey, I began to realize the my psoriasis was the result of something much more, and began much earlier than the presentation of a small dot on my leg. This journey was fraught with misinformation or just ill-informed medical professionals who are to geared to a drug prescription pad solution. Here are a few ‘shocks’ I discovered along the way which really shaped my treatment plan…or lack thereof.

Left Leg circa 2017

Shock #1 – Medical Treatment of an Autoimmune Disorder. When my psoriasis lesion presented in 2003, I was told to just watch it. I’ve since come to realize that this advice was very bad. Because the lesion was too small to be treated and, with my history of cancer, no one would prescribe really strong drugs for such a small issue. (Good, because I didn’t want them anyway.) I also had a severe Vitamin D deficiency; where normal was 40, I had 10. This factor was overlooked by my dermatologist.

While the guidance of ‘do nothing’ was bad, this doctor could have prescribed strong drugs to kill my immue system when, in fact, my immune system was working as expected. My doctor just didn’t view psoriasis that way. I hope that the past 20 years have helped to educate him.

What I didn’t know is that I would hear this phrase for the next 20 years: Too small, not severe enough, etc. When did this little skin issue become “severe enough” to be treated? Surely, there was some cause, wasn’t there? More little spots began to appear looking like a little scrapes or knicks. Again, too small to be given oral medication (Again, Thank You!), and too much to be totally ignored. Yet, I did just that with one exception: I began to document my journey in pictures. This is the same leg, about a month later, right after a flare up. A few things to notice here. While the lesions look about the same, the redness surrounding them indicate a flaring of the wound. During a flare, everything becomes inflamed. Swollen legs and feet. My joints would ache. Towards the end of whatever would exacerbate the lesions, I would observe that the red areas now became part of the whole. Like the spread of ooze, my psoriasis crept into the healthy skin. This photo is at the end of a flare when my legs became normal again and I could see the psoriasis become larger as a result of the flare. Also, I noted the difference in leg size. This was when I realized that there may be a correlation of swelling to flare ups. My legs would swell for about two days and, then, become really thin. I could not correlate to any cause but knew there was something else, something more insidious that was part of my daily life.

I also noted that the lesions became larger within the inflammation itself. While swollen legs, feet and hands had afflicted me pretty much my entire life, I had always discounted this as just part of being me. Instead of deciding that I just skulk off into the corner, I began to become more proactive about whether or not everybody suffered as I did with swollen legs and feet. (I learned they didn’t.) Then, I began to question the treatment plan and considered this question: What if the treatment plan that has been proposed was inappropriate? (It was, for it did not search the cause but offered BandAid solutions.) During this time, I began to test certain things and looked for a dietary correlation. Changing my perspective a bit, I wondered if there was another ’cause’ for my brand of psoriasis and is there any role of bodily inflammation in a skin disorder? Inflammation is my name; disease is my game. More on that in another post. The journey was very long, windy, and extremely helpful…which lead me to shock #2.

Shock #2. Psoriasis has an internal causation. My own research showed me that psoriasis is not a skin disorder. While it presents on the skin, the ’cause’ is internal and psoriasis is labled as an ‘autoimmune’ disorder. And, do you think the medical doctor EVER told me this? No. I had to research this myself. Why would I not have been sent to an autoimmune specialist? Well, because psoriasis is labeled by the medical establishment as a skin condition because that is all people see.

We need to look past the presentation and, like obesity, challenge that these disorders are reflections of personal behavior because, frankly, they aren’t. That viewpoint, then, impacts one’s treatment options when your medical doctor believes that you are the cause of your own disease. Our medical establishment treats results because that is monetized and can be clearly justified. So, in a cut, we treat the result by using stitches and bandages. However, if the person endured their cut during an argument or violent fight, treating the injury does not solve the problem, does it? While this is an extreme example, it clearly highlights that disease may be a result of something else and not necessarily just my body going bad. Bodies don’t go bad, they are mistreated and have an unexpected result from the mistreatment.

Shock #3 – There is no treatment that will “fix” my psoriasis. Let’s fast forward now so that all of the boring past, trials and tribulations, can serve as my ‘road to recovery’. This is my psoriasis on June 19, 2021. I really believe the worsening of my symptoms was exacerbated by the Pandemic and being confined to the house. This, too, is the subject of a series of prior posts so I won’t go into this right here in any detail. Just know that I gained a siginficant amount of weight and leaned into anything and everything I ate from my childhood. This is also where I learned that I used food to soothe my anxiety and depression. The back of my leg is equally as inflamed with these sores. I’m showing only my left leg in comparison just to save and limit the yuckiness of my legs. My right leg is a bit better but shows the same progression. (The original lesion from 2003 was on my left leg so I call it ‘my older sores’.) Each spreading was denoted by small red spots or blotches that just became larger and larger. Today, this has spread to my elbows, hands, face, and nose. All of this spreading is after light treatment, oral therapies (yes, one doctor presribed one where I got extremely ill), topical therapies, and various different diet options. Nothing helped.

Shock #4 – The medical establishment does not provide prevention tips; they treat the disease. This may not always be the best course of action. This was not a new idea to me but I always just wondered more like a “What if” scenario. What if this skin disorder wasn’t caused by my body deciding it was breaking? Throughout my entire psoriasis experience, I would wonder about this and actually asked a few times about dietary correlations or other environmental causes. The answer of your body is just broken made more sense to my doctors when, in fact, I later discovered that my psoriasis IS the reflection of some underlying cause. This, I learned, by researching medical journals and SCIENCE. Yes, SCIENCE. Then, I took a step back and really looked at medical treatment and if I even received adequate treatment. Up until that point, the thought would just pass in and out, like a fleeting image. And, just recently, life gave me my answer.

This is one of those moments where you are just stunned into the truth of the matter. Sort of a ‘stunned to silence’ situation. I have a few of them in my life and this most recent experience was definitely one of them. It was this experience that solidified my hypothesis that is Shock #4. My GP/doctor is monitoring me for high blood pressure. In my most recent appointment in 2023, I was congratulated for losing 30 pounds. My weight, however, was incorrectly recorded for I had only lost 6 pounds. These 6 pounds, however, were and still are a monumental achievement for I lost them not through restriction but through conscious choice. Looking confused, my doctor read my recorded weight taken just 10 minutes prior – and I had to correct her because the last two numbers were transposed. A slight error? Well, in this same visit, I was asked if I wanted a dermatological referral – a full 20 years after my initial psoriasis diagnosis AND after I discussed in depth with this doctor during prior visits. Horrified and stunned, I just clammed up and that was that. This event was also when I realized that I needed to, once again, be my own counsel for the medical establishment was ill-equipped and unprepared to handle more complex situations of multiple symptoms that do not appear related. I needed a medical establishment that supported proactive healing and not always a pharmaceutical “solution”. And, after this recent visit, I don’t believe such exists…in this country anyway.

I began to consider my non-pharmaceutical options and once again began my research but with a new focus. You see, one of my GPs about 10 years ago muttered something about ‘vascular’ and told me to continue to see the dermatologist but we may want a vascular referral. (She has since left that practice.) I really had no idea what she meant. The only ‘vascular’ doctor I was aware of were surgeons and I certainly was not going to waste a surgeon’s time without a formal referral.

The idea, however, of an internal vascular cause for my psoriasis stayed with me. My research considered this and I began to search for a vascular possibility as the cause of my skin condition and I found a more formal term for my swelling: inflammation. By this point, I had noted and correlated the severe swelling in my legs and feet that I had always had to my psoriasis flares. In fact, I was so concerned that I was screened for psoriatic arthritis as a result of joint pain. (Negative for psoriatic arthritis, positive for osteoarthritis. Again, I have since learned that this is textbook progression of our aging process.) In bringing inflammation up to my doctor, however, the idea was quickly dismissed and the steroid route was once again discussed. This was when I realized that my psoriasis would continue despite my use of steroid and vitamin creams; I just knew that there had to be some other ‘source’ or the ‘original site’ of whatever was resulting in my psoriasis. I began to conduct my own research on vascular issues and skin disorders. Then, and this is very random, I began to wonder if the ‘particles’ or whatever my body was interpreting as a skin or autoimmune disorder was ‘pooling’ in my lower extremities due to poor circulation. Could that be a thing? I witnessed my mother-in-law and my own mother dealing with water coming through the skin on their legs. In both cases, my mother-in-law and mother would have been helped with exercise. Could psoriasis be like this but not with water but with ‘body junk’ or the results of some environmental cause that was slowly killing me? Then, I began to ponder that, in this case, what was the one thing I could do to help myself?

And that single question, my friends, was when I stumbled on the beauty and adventure of my lifetime.

My road to healing began with an exercise bike and a manicure.

More to come. Be gentle and go in peace.

My Scorched Earth Proposal

When you hear of the term ‘scorched earth’, what comes to mind for you? To me, this is the very last “take no prisoners” kind of effort. An all-out, no holds barred kind of effort. Scorched earth is defined as a military strategy that aims to destroy anything that might be useful to the enemy. So, while I’m not destroying useful things, I am destroying my own beliefs in what is right or proper treatment for my psoriasis. My new approach may create some unintended consequences. These consequences are also goals but have to be mentally and closely managed to be successful. My definition of scorched earth is more to: This is it! And, my friends, this is the subject of this post: my health journey and a beginning.

I have written about my health struggles. After my mother’s death, I took a hard look at my own life and came up concerned. My own health was following in my mom’s path and I was not going to go down easy. My main concern besides my weight is my psoraisis. While I’ve had a weight problem since I was a child, the psoriasis is an adult problem. Or, a relatively new concern that is, now, 20 years old. I’ve been very encouraged by some additional data that I’ve accumulated, and I’d like to share this with you.

The medical community failed me. Truly. For my psoriasis, the prescribed remedies were steriod creams, powerful drugs or just a shrug of the shoulders. In one case, at a leading medical hospital in New York City, the doctor just shrugged without any real solution. I had been struggling with the psoriasis for about 5 years as it slowly got worse. Working in New York City, I realized that I had access to the top medical doctors. Making an appointment, I was once again given the psoriasis diagnosis and provided my next infusion of steriod and vitamin creams. This seemed to be the modus operandi for my initial visits because, of course, no other doctor did this. Right. When I voiced such to the doctor, she pretty much said that I would need to follow just her guidance so she could properly treat me. OK, I thought. Let me give this another try.

Determined, I salved myself up everyday, my legs becoming an oily, gooey mess under my slacks. The good folks at the hospital who shall not be named surely know their business, right? And, wouldn’t you know it? The psoriasis went away! My calf skin was so clear that I could not see any evidence of prior skin issues at all. My legs were clear, skin nice and solid, and my itching was gone. I found my cure! This doctor is a genius! Then, a few weeks later and out of the blue, I began to feel bloated and I retained fluids. My hands and legs were huge, and I felt miserable with problems walking on my huge feet and just feeling well. And, wouldn’t you know it? My psoriasis came back and with a vengeance for it was really angry that I tried to evict it from my body. (By now, I created my psoraisis into “a thing” independent of me.) My swollen legs had bright red patches covering 60% of my lower leg. Before, I had blotches – spots really – this size of dimes and quarters. After this event, I now had huge chunks of red, swollen flesh. My legs appeared to be chemically burned. Did this just get worse with all of my treatments? I was stunned, and called my doctor.

Time for another visit where the doctor just shrugged. She poked around a bit and had no other offerrings. The nursing assistant who processed me into the office for my appointment had more of a reaction for he actually gasped and recoiled when I pulled up my trouser legs. I was materially worse with bright angry red blotches that looked a second away from a bloody mess. Struggling to understand what happened, I asked the doctor why didn’t the cream continue to work? My friends, this was the FIRST time I learned that psoriasis was treated by steriods but that this treatment does not resolve the problem. What? How can that be? Why would I be given treatment but no cure? And, that is when it hit me: Steroid creams will not solve the problem. I asked if there could be any nutritional correlation or something I could be doing better in my diet? The doctor said not really. I pressed because I had always believed that good nutrition equalled good health. (Folks, just because I could not follow good nutritional guidelines didn’t mean I don’t know about good nutrition. Just sayin’. You may be surprised that most obese people really do know about proper nutrition. It is following these guidelines that is difficult…or so I used to think after I began to question said guidelines.) Then, the doctor said that there were some recent studies about nutritional implications in psoriasis. My thought then was this: Why did I have to ask you repeatedly to get this information? And my only answer to that question as I pondered the visit on my way home? My changing nutrition and healing myself does not sell drugs. Or medical visits. Or snake oil cures. I realized I was part of society that was sick and would follow that path. (Sociology studiers know about this.) I began staring down psoriatic arthritis and pictured myself tragically impacted by this debiliating disorder.

Psoriasis cure?

Not wanting this for myself, I began a path that would take me to new heights, deep lows, meeting new friends (Hi Karen!), and ending up with a new focus: Education. I also realized that while searching for my own purpose in life, my obstacle is actually my purpose. For this reason, I plan to share my journey to healing with you in the hope that this message finds and helps someone else. What you will find out is that a kind person provided me with key insight that set me on my own path to wellness, a journey of insight, reflection, and change. Very scary but, if I can weather the storms, the results will be their own reward.

One thing I have learned is that there is a lot of information – and misinformation – available to us that is packaged up and looks really official. Check out this study on psoriasis here. To the layman, this looks really technical and must be legit because of all of the chemical notations. (This was my initial take!) However, the study has this language in its abstract section that had me wondering:

“Psoriasis patients often show unbalanced dietary habits such as higher intake of fat and lower intake of fish or dietary fibers, compared to controls. Such dietary habits might be related to the incidence and severity of psoriasis.”

Now, that is just – excuse my language here – fucking bullshit. I’m calling it. BULLSHIT. I have been on so many diets: Weight Watchers, Jenny Craig, NutriSystem, vegetarian, vegan, grain-free, AIP, liquid – you name it. I have never seen my psoriais improve with any of it. Now, most studies are reliable and probably okay. However, you needed to be really consider all of the possible issues within the testing to get the true picture. How are studies funded? What data was used? What preconceptions could there be? These are legitimate and valuable questions to be answered, too. Now, this study provided no scientific evidence for this statement, and the basis of this analysis may consider this unverified premise based on a societal viewpoint unfavorable to the obese. (And, if you don’t believe there is a bias towards people who are overweight, you need to buy the Brooklyn Bridge I’m now selling. Cheap.) I cannot tell you how many times my issues were discounted because my weight was seen as ‘the cause.’ (Hello, Endocrinologist, who told me my thyroid numbers were good only to find out – accidentally – that I had cancer of the thyroid.) Well, what if my weight is the RESULT of something else? What if our medical establishment actually focused on obesity not as a biblical failure or any type of failure of that matter. I would routinely sit with a group to eat lunch, gaining weight on my food which was half the volume of those around me. Yes, I think I gained their weight too!

Here is the dilemma for the average human: Any nutritional study is subject to interpretation because nutritional studies require very specific controls. Depending on the study, the data can be misinterpreted if the human factors influencing the measurements are not also considered. These types of trials are very expensive because you must provide for quite a lot of controls to really be able to assess the data. Therefore, most studies do not include this level of control or they are funded by large companies who have the currency to spend on biased studies to support their product. Additionally, each human is different and their bodies metabolize the same foods with different results. A lot of what I eat reacts differently with you as I described at my lunch table. Why is that? Well, my background – and genetics – are different. And, I then began to consider that I am a first generation American. My parents were German and immgrated in 1956. Therefore, they grew up eating very differently than we do today. I recalled years past and how different my diet and eating were…and when that changed, and correlated this to a specific point in my teenage years. I began to consider this approach.

First, I took on educating myself. Then, I experimented and measured success through my psoriasis healing. Then, I backtracked to clear my own journey, see what I learned, and deliberately used that learning to move forward to health. I’m doing a daily ‘check in’ on my journey right now and I’m seeing very positive results. However, time will tell if this path is one I can stay on, or if I will need to make a turn somewhere ahead. That is OK for progress – and marking progress – is extremely helpful. In the past, I buried my head to measuring progress for I didn’t want to acknowledge my own failures. (Area #1 that I needed to fix before beginning this new path.) I have many failures on my path to success. Just like dating, one has to meet many partner prospects before deciding the type of person you wanted to be with. I used to see my own struggles as failures. However, I now see these as little detours on my ultimate journey. Detours that gave me a two options: I could wallow in them, or I could pick myself up, dust myself off, bandage my wounds, and begin again. And, I remembered to bring lots of bandaids for this journey is not without injury.

To a new beginning. Peace.