A journal of healing

Archive for the ‘ACE study’ Category

What is PsA and P?

Psoriatic Arthritis: PsA is an insidious disease. It is very misunderstood even by the medical community. It is hard to find a specialist who can really guide you. There is no cure and it is progressive. PsA has a partner, Psoriasis or P. They are not mutually exclusive. Each has their own issues and pathology. It is rare to have PsA without P but you can have P without PsA. Both are considered auto-immune diseases and often have other co-morbidities. All this is evidence based information.

And much like other diseases, they are triggered by stress and trauma. If you understand the ACE Study, it all makes sense why diseases like this are becoming more prevalent. It seems lately more and more people are being diagnosed with some form of chronic auto-immune disease. Is it because so many of the baby-boomers are of an age where disease is a common part of life? Or is it because there are more studies done and better research as to causes of crippling diseases in senior citizens.  I think it is both.

I have been involved in two research projects. One was for P and the other for PsA. The one for P was fascinating. They were looking for the correlation of outbreaks on the skin and stress. We were divided into two groups. One was given only exercise and nutritional information and asked to make lifestyle changes. Fortunately, I was chosen to go into the other group. We were going to be trained on Mindfulness Based Stress Reduction techniques. MBSR is now a more common approach for people dealing with issues such as pain. Back then, it was pretty new and out there. Jon Kabat-Zinn developed the program for people with cancer and pain.

The program was several months long. We met once a week. We talked about our week, our disease, anything we wanted. Then we meditated. Sometimes we did yoga. This was a several years ago. The instructor was the Chief MD in charge of the Oncology Department at the Medical Center. He was very progressive for the times. Now, there is a requirement that all med students take MBSR. Everywhere you look they are courses on Mindfulness and stress reduction of some kind. This is progress. But I live and work for a very large medical center that is also a teaching hospital, a university and a research institute.

But with all that, they still do not know much about PsA and P. We do not have a lot of doctors who are rheumatologist in the area. I am fortunate to have a good one. But even he will admit it is trial and error. And we have had some egregious errors. The course of action is to put the patient on a drug regiment which often includes steroids and progressively stronger biologics. Even the manufactures say there is high risk associated with their drugs. It is also known that they only work for so long and the body becomes immune to the drug. Then you have to start over.

In North America and Europe, between 18 and 42 percent of people with psoriasis, an inflammatory skin disease, also have psoriatic arthritis. In the United States, psoriasis affects about 2.2 percent of the population (7.5 million people), making it the most prevalent autoimmune disease in the US. (http://blog.arthritis.org/psoriatic-arthritis/psoriatic-arthritis-psoriasis/)

Nothing is more terrifying than knowing there is nothing you can really do to stop the progression of a disease that is ravaging your body. And there is nothing more frustrating as seeing the deterioration of your body and your ability to be independent. The medications all have side effects and some of them include cancer.

I have always had this disease. It got much worse when I went through my divorce. I believe the stress triggered the eruption on my skin. Doctors, including a dermatologist, could not diagnose why I had this rash everywhere because it did not look like “normal” psoriasis. It was though. I had always had issues with my joints, but was told it was because I was fat. But when my hands curled into claws and I could not hold on to anything, I finally was sent for testing.

PsA is possibly genetic. I had psoriasis as a baby but they called it eczema back then. You cannot catch PsA and P is not spreadable. There is no cure but you can put it into remission. I have been blessed to do that several times including right now. I have only a few skin lesions.

But from all the drug switching and the use of such powerful drugs, I have diabetes. My pancreas is whooped. My insulin levels are normal in the afternoon, but in the middle of the night they drastically peak. I am on medication now for it that adds a lot of weight….. Makes no sense because as you gain weight, you insulin resistance goes higher. The shot I am for the PsA also puts on weight and also increases your glucose levels significantly. It also causes high blood pressure, which is also not good.

But the main comorbid with PsA is actually coronary issues and kidney issues. The inflammation that causes the P and PsA also attacks the heart, arteries and other organs, especially the kidneys.  So far, I do not have coronary issues. However, my kidneys are in imminent danger of failing. Diabetes also impacts kidneys and so does high blood pressure. It is a circle of what is worse. Much like most auto-immune diseases, you do not die of the disease, but of the comorbidities.

I wrote this blog this morning because of a couple of reasons. One, people need to fight for better testing and more awareness of the PsA and P. The symptoms can vary as much as the way the rash presents itself. Two, we need better treatment that does not cause more issues than the disease. Three, we need more research as to see if there may ever be a cure for PsA and P and further studies related to trauma like the ACE study.

Living the Ace Study

This past week was terrible. I did not get through it unscathed. I am wounded and in a bad way. Let me explain something about triggers and how simple things can dig so deep that it can immobilize someone. I again point to the ACE Study http://www.acestudy.org/index.html  about Childhood Trauma and the lasting effects of living in and witnessing trauma.

The effects of trauma are pervasive and unique. What triggers me may not trigger you. And how I react and for how long will also be different. The first thing that I learned when I became a Certified Trauma Professional is to allow the feelings. Never tell anyone what they feel is wrong, or over-reactive. What a person feels is their right. Trying to modify behavior by saying they are wrong to feel that way or try to change them can make things a whole lot worse. It is the same principal as working with grief. Time and reaction is unique.

Reaction to trauma is also a chemical and physically wired behavior. Neuropathways are developed as trauma is experienced or witnessed. When triggered, the body reacts out of protection secreting chemicals to produce energy for flight or arousal. Long time exposure will create a programed system reaction which often includes the shutdown of the body, anger and explosive behavior, and often a desire to stop participating in life. These are the three basic reactions of trauma: fight flight or freeze. A triggered person will resort to one or all of those reactions without a sense of doing it.

This prolonged constant flooding of chemicals like cortisol and other potent hormones designed for safety will affect the body and cause illness. It is proven. See Ace Study. And this reaction does not fade, but for many, it exponentially gets worse. And so in time, less creates more of reaction. For some it becomes over whelming and they cannot function. There is no actual cure for PTSD. The only hope is to learn to live with it and tame the Tiger so to speak. By exposure to more positive situations and learning to self-sooth and calm, many people learn to cope.

I learned that revisiting the trauma is not a good thing. The old method of recreating events and mollifying them does not work and is not healthy. You actually recreate a new trauma by doing that. I found that out too late for me as I spent a lot of time recreating my events in an attempt to grow past them. It did not work. It is enough to say that I spent over forty-five years in an abusive state caused by my alcoholic parents and an abusive husband. Forty-five years is a long time to be treated like shit; emotionally, physically and sexually mistreated. One does not get over that.

So back to this week: things at work are to the point that I am reacting by shutting down. It has progressively getting harder for me to be there. On Monday,  I was “in trouble” because I was being negative in a meeting. Supposedly I was grimacing and my body language was offensive. I swear this is what was reported. In the past I was written up for rolling my eyes. My boss is a terrible boss and the person who reported this is her mini-me. I understand the dynamics and I could spend a whole other post on how horrible it is at work. But let it suffice that my boss’s words to me were cruel and hurtful. She told me no one wants to work with me. In a previous accusation of misdoing, she told me no one likes me. She then said stop reacting like you’re the victim. If she only knew.

My Clinical Educator resigned after 27 years there.. I threw a reception for Margaret on Tuesday right on site. We had a fabulous relationship. She had my back, and I had hers. I would never have survived without her when I first started. Her leaving trigger all sorts of abandonment issues for me. She saw the mistreatment and the poor leadership. She left because she had enough.

One of Margaret’s favorite things is cake…. Well actually frosting. I had a special cake created for her. It was beautiful and fresh. I was sitting enjoying a small piece, minding my own business. The VP of Clinical was standing in front of me eating a large piece of cake as well. Then, totally unsolicited, he turns and says over his shoulder just as I was putting a piece of cake in my mouth, “should YOU be having that?” I was flabbergasted.

What happens to me when something triggers me is I shut down. I go into this place of protection. Unfortunately, I am unable to speak. I remained in the room until the end of the reception. I never touched the piece of cake again. When I left the building, I burst into tears and cried all the way home. (I actually cried again when I wrote this) I had my fill of painful criticism and hurtful remarks. This is continuing to affect me as I have not been able to sleep through the night. I wake up and perseverate on all the nasty comments.  This is physically causing some nasty flares and a lot of pain.

I am hyper aroused and anything sets me off like a loud noise or small issues. On Wednesday, Joe’s car had a huge malfunction with alarms and flashing lights going off when we were going somewhere and I completely flipped out. I was so upset I was hyperventilating and curled up. We got the car home as we were not too far way but I cannot explain how terrifying it was for those four minutes. I was so bad; I took the next day off. I had to lie because they would never have understood.

I know what I have to do and I am working on getting out. But it is not so easy. I am lucky there will be escape. But how many other people are out there who deal with this daily? No one knows the effect rude and nasty comments can make. We all agree a positive remark can make someone’s day. Why is so hard to see what a offensive, uncalled-for comment can do?  We need to learn to be more sensitive to people. Kids are killing themselves or becoming addicted to escape the effects of bullying which is extremely traumatic. Bullying continues in adulthood and some people are true experts at being bullies. I have met many. How many people suffer in silence only to get sicker and sicker because the effect of childhood experiences haunt them as adults?