Fighting Pain

The last couple of days are the ones that remind me that no matter how much meditation, exercise and sleep I get, I have a chronic illness that causes me great pain. I went to a seminar a couple of days ago and the presenter talked about accepting pain. I thought I would put out a request from my fellow bloggers for their opinion and what they do about their pain. I know several writers have issues with reoccurring pain.
The worse thing is the condescending attitude some people (not you guys) can have about dealing with pain. I have been told by well-intentioned idiots that all my pain is in my head. Yes, of course it is. But I only recognize it there, it stems from my body. I have been told that if I lose weight I will not have pain. Ah, yes I will. It has nothing to do with being big. Yes of course, losing weight will take the pressure off the joints, but it will do nothing for the destruction on my organs and joints.
I thought I would take a moment in this blog to do an awareness of Psoriatic Arthritis. That is what I was diagnosed with back in 2004. The results of having to wait for the medical field to catch up with being aware of this disease resulted in permanent damage to my feet, one ankle and lower back. My hands were starting to curl up and I had great difficulty in any movement. But, laying still was just as problematic. This disease is caused by….and this is where it gets dicey…. They are not sure. And because of that lack of knowledge, I fight the fight with everything I have to see if it is something totally manifested from within. I am not going to get into all that. The end result is pain. And to try and explain the pain is ridiculously hard. It was for this reason I started this journey last year
A brief explanation of the etiology of PsA ( psoriatic arthritis) is that the immune system is on hyper drive and produces inflammation that attacks healthy cells like the joints and skin and yes, organs. It does not destroy the bone. It attacks the supporting tissue and ligaments causing the joints to collapse, which is where the disease “looks” like an osteoarthritis. It comes and goes with flares that are asymmetrical, meaning they can attack anywhere. Quite often, the skin which is the largest organ in the body reacts by producing scales that look like leprosy. I was going to say just kidding, but most people including the medical field react that way. My skin does not present the “normal” way which was another cause for delay in the diagnosis. I get measle-like rashes. They gave me creams for a couple of years which caused worse reactions because my skin is very sensitive. It attacks quite often the scalp. I have very long hair which is a personal love of mine. I love hair. Unfortunately I have a terrible scalp and I am often embarrassed with terrible white flakes which are NOT dandruff. My skin sheds. I keep it as best as I can under control. What people do not get is that the rashes burn and yet itch and when you itch, they bled…and who is on Coumadin???? Yup, I take it for another hereditary issue which I have written about. So I bet you have the picture. I am a limping, bleeding rash covered cripple. NOT!
That is my point. I could go there very easily. They actually now allow this disease to be classified for disability insurance. There is no cure. It will only progress. And oh, I forgot to add two things. There is an incredibly high mortality rate with this disease, especially with comorbidities. And the cure will kill you eventually too. Because this is one of those new diagnoses, and it only touches 3 percent of the world population, it is not going to get help anytime soon. There is only one famous golfer who has stepped up to the podium. (He looks totally stoned in the commercials.) So if you have seen the ads, it is for a ridiculously expensive shot you are supposed to take weekly. I take it monthly and it is at the end of the month right now. There is a high probability of lymphoma with extended use. I am on year 7 with this drug. I loathe taking it.
So I am always looking for alternative methods of dealing with the pain. And a brief description of the pain is in order. It is twofold. There is the flare, which for the past two days is in my right foot. That is brand new. It usually presents in my left foot and ankle. And my lower back and right hand are flaring this week. I usually wait it out as it will dissipate and shift to somewhere else. I am never pain free any more. One of the brilliant requirements from the sages of medicine is that they want you to exercise. When I exercise, or for that fact do a new move…. I offer myself up for a flare. My body reacts to the use of new movement with “it’s an injury.” It has caused me to be fearful of going to exercise classes. But I am anyways. The Tai Chi classes are not high impact exercises. Actually this week, I recovered from the Monday night class quite quickly which indicates to me this is going to be a safe exercise for me. The flare in my right foot has nothing to do with anything….which just makes it more frustrating.
The other pain is very hard to describe. This is not so prevalent this month as last month. My body literally fills with inflammation and it does swell in some places. But the feeling is more like have thick goo in your blood that is molten. Not that it is hot to touch, but more like burning and irritable….which is what happens to my mood. I become very irritable. I am very uncomfortable in my own body and there is no getting away from it.
So to circle back to the lecture I went to, the Dr. presenting talked about accepting the pain. I do not accept this concept let alone the pain. But I do understand what he is saying. I would normally say something like he has no idea, and of course he is not me and would not have the same feelings. But the poor man was clearly in pain during the lecture as he explained he just had knee replacement. Pain is so subjective. No one can clearly comprehend what another person’s pain is. I can only deal with mine and you have to deal with yours. I do think that there are lessons to learn from sharing coping mechanisms, however. On a personal note, I do not want to end up in a nursing home pinned to a bed being fed drugs just to stay alive. So I fight the fight.
I am adding the website for the National Psoriatic Arthritis Association


6 thoughts on “Fighting Pain

  1. Please remember the good dr. Did not understand or appreciate the concept of bottom up processing into the brainstem from the senses as it relates to threat assessment. This coupled with a commonly held “belief” that pain needs to be managed not resolved leaves a person in limbo without direction. Life should not be a series of goals to be achieved but a direction to be traveled. Pain is inevitable in any direction but, if you continue in a direction you do not not have to circle back to re-experience the pain again and again. Try to think in your daily decisions this way does this decision go in the direction that I want to live my life. If it does not, there by definition be regret with regret comes pain. Pain can be physical, emotional or and spiritual in nature or as you well know a combination. Cheers j

  2. Sending hugs. Although my illness isn’t the same I totally understand the difficulties you are dealing with, including the attitudes of others. Illness is a very tough path to tred but you’re not alone as you no doubt know.

  3. I have no answers. I hurt every day in varying degrees – totally invisible to most people. I simply have to live through whatever the day brings. As thoughtsalone would say, “It is what it is.” That may sound as though there is no compassion, but I don’t think so. There are facts that cannot be changed at present, and that is that. Being alive has a 100% mortality rate and, with that in mind, I take advantage of what relief is available while I am here, (though I do take the minimum in medication that I can get by with). We keep going, knowing that there are people that care and understand. Sometimes that’s the best we can get. I hope that your pain lessens quickly. Peace . . .

  4. To “Like” this is only to show support for you and compliment the well-written expression of your thoughts. One big problem with situations such as yours is that we hope for an answer, but there isn’t always one. Some things that have been mentioned to you surely are adding to your troubles and the suggestions would help, but you’re certainly right in that they would not solve the problems. Your condition sounds like the result of a number of factors from heredity, to lifestyle to bad luck and the great unknown. Unfortunately, also as you well know, cure-alls don’t exist. I feel for you yet have nothing more I can offer beyond a sympathetic ear and a positive outlook. Rising Hawk is right, life is what it is and none of us get out of it alive. We don’t get the life we want, we get the life we have. All we can do is make the most of it and try to appreciate the beauty and love we find in ourselves and in the world. Thank you for sharing your journey with us and some of your inner beauty. Sending love and peace to you.

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