History of the Suffering and Relief – Psoriatic Arthritis
This blog is about as personal as I would ever want to get with a close loved one, and here I am telling the world! Why? I want as many people as I can contact through this tool to know that — “Hey, you 2 to 3% of the populace, you can most likely get INCREDIBLE RELIEF”.
The Early 70’s –Fingernails go, Unable to run
My level of embarrassment over this condition has gone on a graph like line similar to a wildly-gyrating stock market graph. But that’s starting with the present and going backwards. Let’s go back to the early 70’s. When I graduated from college, I was the school handball champion. I was in the handball courts day and night and on the weekends. I was a fiend for exercise and upperbody weight lifting. In the early 70’s it was free weights and flexing in the mirror. Arnold Schwarznegger would come by and get training from our Eastern European Coach – (actually from Minnesota, but he LOOKED like a Russian coach) Harry Schneider. In that weight room you could bulk up. That’s what I did for my chest and arms. But mostly I played endless handball. I say this only to make sure you understand I was a MANIC exerciser. I could never have foreseen that in just a few short years my body would SEIZE UP, and my fingernails and toenails would separate from the quick on the end of my digits and look LOUSY for the rest of my professional life. (more on that later).
It was a matter of about 4 or 5 years and jogging would freeze me up for days. It felt like the phrase of the day “lactic acid form over exercising”. It was not lactic acid from over exercising, but I did not know what it was. I would awaken with pain and stiffness. I would become exhausted at the end of the working day. I would lie down on the couch and watch TV at the end of the day because I needed the rest. It felt strange, but there iit was. I had a DEBILITATING AND EXHAUSTING condition and my joints, (lower back, hips, knees and ankles).
Then my fingernails and toe nails started separating from the ends, forming large luminous yellow spaces that stood out like fog lights on the ends of my hands. This filled me with despair. I fought the feelings and tried to talk myself into not thinking about the fact that people would be pitying me and squinting and be disapproving and laughing at me for the rest of the next 35 years. After awhile, when new jobs would happen, I would go through this period where I would think about it, and then try to NOT countenance it in my brain, while people WERE countenancing the condition on a daily basis. There were questions. I answered them: “Its a genetic condition. Its not contagious.”
Yes there are those types of people who squint and look at your with displeasure as if you have done something to yourself, as if you are not hygienic, as if you are trying to disfigure yourself, just so they can hate you. ALL THOSE THOUGHTS go through your head and then you try to get philosophical and detached. And over the decades interesting things do happen to your head when you walk around mildly disfiigured everyday. So for the 70’s I was stiff, unable to run, disfigured in my hands and feet and very EXHAUSTED. But no psoriasis and I could still move around and WALK a great deal.
The 80’s and the Patches –
In my 30’s I began to develop psoriatic patches on my legs and waist and elbows. I would bathe and use topicals and try not to become alarmed. With this condition, you are always bargaining with yourself. You say: “It will only go this far and no more.” But it doesn’t. Its progressive and it gets worse and worse. At least it did for me. I have been told that I have had a very severe case and these comments do not apply and should not be thought to apply to others who you may know who say they have “psoriasis” or “psoriatic arthritis”. I am communicating my level of suffering to let you know how UTTERLY TRANSPORTED I am by my HEALING. So, we go on.
I am not really as lazy as my kids probably think I am. I did not sit them down and say: “Your Dad is completely exhausted at the end of the day, and when he walks at night on the hill, he comes back as stiff as Frankenstein”. Maybe I should have said that, but I have an unfortunate STOICISM that may not have served me well over the decades. It was not a manly thing, it was a stoic thing. At any rate, I would estimate that I was in lower back pain ALL the time (degrees of variance up and down). Any kind of physical activity over 10 to 20 minutes would just put me down. I could get up again and go at it, but sustained effort was not do able. I am glad I was not a blue collar guy because it just would not have worked.
The appearance of my psoriasis helped me investigate and read and study. I concluded – “Aha, I have Psoriatic Arthritis”. I learned that only a few people have this condition in contrast to “simple” psoriasis. Being able to join the symptoms gave me a psychological kind of reference point. I started realizing I was really suffering and started getting very paricularly observant of ALL of my levels of pain and suffering. One time one night in Golden, Colorado I thought MAYBE I could run for about a half mile. WRONG. I stumbled stiffly for three or four days. Depression deepened. Sadness overcame me. I kept on thinking about the life sentence. I kept on worrying about how bad it was going to get. It truly affected my life, and I thank my Wife and sit in complete gratitude that she stuck with me with my grief and my condition.
The 90’s and More Stress – GLUCOCORTICOIDS
My positions became more high stress and more demanding. Glucocoricoids are bodily substances produced by the body’s stress fighting system that can also end up being quite destructive.
Let’s define “glucocoritcoids” –
A group of steroid hormones derived from cholesterol and produced in the adrenal gland. The majority of the activity related to glucocoricoids in humans is due to cortisol (also called hydrocortisone). This hormone is elevated in response to stress and has effects on many different aspects of human physiology including the ability to suppress the immune system.
The below quote academically and quite specifically describes the paradox of stressful responses in the body. While there are those responses in the body that actually benefit the body and help it through stress, there is a an inverted U involved. (That old inverted U of DIMIINISHING RETURNS that seems to permeate nature and behavior and science.) Well, when stress reaches a certain level, your glucocoricoids become more harmful than helpful.
Please observe the following quote:
…”most any kind of threat to homeostasis or stress will cause plasma glucocorticoid levels to rise. The increased levels have traditionally been ascribed the physiological function of enhancing the organism’s resistance to stress, a role well recognized in glucocorticoid therapy. How the known physiological and pharmacological effects of glucocorticoids might accomplish this function, however, remains a mystery. A generalization that is beginning to emerge is that many of these effects may be secondary to modulation by glucocorticoids of the actions of numerous intercellular mediators, including established hormones, prostaglandins and other arachidonic acid metabolites, certain secreted neutral proteinases, lymphokines, and a variety of bioactive peptides. These mediators participate in physiological mechanisms–endocrine, renal, immune, neural, etc.–that mount a first line of defense against such challenges to homeostasis as hemorrhage, metabolic disturbances, infection, anxiety, and others. Contrary to the traditional view that glucocorticoids enhance these defense mechanisms, however, it has become increasingly clear that glucocorticoids at moderate to high levels generally suppress them. This paradox, which first emerged when glucocorticoids were discovered to be antiinflammatory agents, remains a major obstacle to a unified picture of glucocorticoid function. We propose that stress-induced increases in glucocorticoid levels protect not against the source of stress itself but rather against the body’s normal reactions to stress, preventing those reactions from overshooting and themselves threatening homeostasis. This hypothesis, the seeds of which are to be found in many discussions of particular glucocorticoid effects, immediately accounts for the paradox noted above. Furthermore, it provides glucocorticoid physiology with a unified conceptual framework that can accommodate such apparently unrelated physiological and pharmacological effects as those on carbohydrate metabolism, inflammatory processes, shock, and water balance. It also leads us to suggest that some of the enzymes rapidly induced by glucocorticoids, such as glutamine synthetase, detoxify mediators released during stress-induced activation of primary defense mechanisms. These mediators would themselves lead to tissue damage if left unchecked.”
As I studied the PARADOXICAL effects of glucocoricoids, I looked at my own case for a subjectrive feeling of what I was reading in all kinds of literature and on the internet. My adrenal gland was BOTH carrying me and killing me. It was my adrenal gland that got me up, feeling full of energy even though I had not slept and then burning through the day, and as a result of all this, completely collapsing at the end of the day and tending to my horrid inflammatory state in my bath at night. For 5 years I lived like this, and came close to completely collapsing from it.
In the 90’s the “U” tipped and my poor body went into an even more inflammed state than it had been before. From 1998 to the present, I was truly suffering everyday. Of course the most demanding professional efforts, the hardest longest work and the deaths of family members and increasing older age and stressful family issues all came together in a mighty kick in the butt. SLEEPLESS NESS started taking over. From 2003 to 2008, my sleep was slashed into little 2 hour packets and fitfulness. Everyday I started was a day driven by a wasting adrenal gland and a completely inflammed estate. My psoriasis over this time ended up covering about 65 to 70% of my body. (All my back, stomach, lower arms, upper arms, ALL my shins and ankles and most of my thighs). It was terrifying to me. Even after all these years, in the end it was terrifying to observe. Shamemaking to show the doctors. Just a devastating state!
Too Much Drama but Oh the Joy! –
This might appear to be too much drama, for there is great suffering set about on the planet, and I am still ambulatory and look on the outside like a regular citizen. So enough of the drama. But you had to know the secrets and the affective condition of my being to understand the JOY that I was about to experience.
The doctor (rheumatologist) and my wife both stared at me with love and disgust. “Just because this is incurable does not mean its UNTREATABLE – FOR HEAVENS SAKE!” I had just answered the question as to why I had not sought help earlier. I was properly put in my place. I had no excuses as to why I had not sought help with Enbrel earlier. That’s probably the question everyone is asking. Suffice it to say, its that Highland Scot Stoicism or something. I have no excuses and don’t want to try to explain. Let’s deal with what happened next!
Once I decided I wanted the injections, then there was the great waiting. I had to go get XRAYS and blood tests. Then after that I would have to wait for his next availability. THREE MONTHS I had to wait. My physical state was such that I could not walk a half block without seizing up and breathing very hard. I was at the bottom. I used to walk two to three miles like a breeze. Now I thought I was going to die. That was in November of 2008. I began taking my ENBREL shots in March of 2009.
The FIRST SHOT was remarkable. Not that it took away my psoriasis, but that my knee and hip and joint pain seemed to lessen. Two shot and three shot definitely noticeably affected my arthritic pain. Shot four and five started affecting my psoriatic buildup. Red went to pink, skin patches lessened and lessened. Shot 6 and 7 brought the psoriatic buildup down to 50 to 60%. Arthritic pain was turning into JOINT BUOYANCY. Energy was exploding in me. Vitality was not like it had been since my early 20’s. Positive GIddiness was pushing out of me. I was becoming insufferably happy. My stiff unmoveable neck was actually able to turn my head to each side. (Still with stiffness, but greater movement – and this was only SHOT 7)
#8 INJECTION – The Tipping Point –
Nott only is there an INVERTED U of diminishing returns — a point where what you have been doing just doesn’t work anymore and you are getting very little benefit — there is also the TIPPING POINT – a concept now very popular, in whcih a point comes when the boat starts taking on water and a real change starts happening with a minimum of effort. Imagine what it takes to turn a sail boat over when its just a few inches from its submerging moment. Very little effort. Well, SHOT # 8 was just one shot, but 3 to 4 days after I took it, my psoriatic buildup decreased to like 90 to 95%. My joints became buoyant and bouncy and my finger nails started turning back to 1978 conditions. It was like watching a movie backwards!
My daughter Kristen looked at my nails and said “Oh my gawwwd!” I said, “I know I know. And look at this.” I did a dance move I was famous for before she was born. I can jump around now with elasticity and verve. Now is this psychological, and perhaps adrenal driven? Sure. That’s the beauty of it! I feel alive again. I am downright insufferable right now. I will calm down EVENTUALLY, but I can tell you right now that if you suffer from the special immune disorders that apply, do not NOT check out Enbrel.
I have new goals now. New aspirations. New thoughts and plans that 4 months ago were noit even glimmers of coneptions, let alone dreams. At the end of 2008, I was ready to just early retire and pray for a level of energy that would keep me going at a moderately productive level. Now, I am seeiing a new world ahead of me. Boy is this guy excited? Yeah I am. Which only tells you how long a person can suffer with this condition. If you are reading this blog and know someone or are someone who can benefit, pass this joy along.