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HIV/AIDS Blog Central

The Pain Blog

By Shana Cozad

November 8, 2011

What is the last pain you felt? Was it physical or emotional? Pain is dually a physical sensation and an emotion that has the ability to exist for all of us humans. Thus it is in many ways normal. I have never met a human that feels no pain. And it seems our reaction to pain is what separates the ones who cope well with pain from the ones who need help.

Me, "Hello pain. I see you are paying a long visit this time."
Pain, "Yes dear."

I have tried for decades to find validation in my pain. I have been in emotional pain with my parents for decades. I have been in pain at my teachers growing up. I have been pained by people who caused deliberate physical abuse, sexual violations ... and the list goes on and on. And much of my life folks have either said, "Stop feeling that way," or "Just feel differently, it's a choice." In my wee 40 years on this planet I have had three surgeries, live with chronic back pain, and have endured through many side effects to meds which include various levels and regions of the body for pain, have had spinal meningitis and a slew of opportunistic infections that are uncomfortable to say the least. Oh, and I birthed three children "au naturelle" and without pain medication.

Me, "And I see that no matter what I have tried to get you to go away or suppress you, you are still evidently here."
Pain, "yes dear."

I attempt to tell pain to go away. I'll even ignore it from time to time. I occasionally turn my back on it when I have no patience ... but in the end when I dare to peek, it is completely still there. Like dust bunnies that dwell under the couch; just because you can't see them, does not mean they are not there.

So I have come to the conclusion that my pain needs validation another way. I simply want to put this issue on the table in a new way. Pain clearly links many of us together in a multitude of ways. Perhaps the better we are able to talk about it the better we are at coping with it. True to my core, I'm very much anti-violence, anti-war, anti-confrontational all together, yet I am all about wanting my "being" to be heard, seen and acknowledged.

Me, "So even if I tried to be frightfully angry at you or just pretend you are not there, you would not leave, is that correct?"
Pain, "I am not leaving soon, that is all I can say. I am simply here."

For the purpose of an example of pain, I'd like to talk about physical pain. Recently I have had leg pain and night sweats return. The leg pain seems to be characteristic of "Myopathy," the type of deep muscle pain associated with new medications. Yet none of my HIV meds have changes in over 11 years and side effects haven't reared their ugly head in some time either. Night sweats don't actually hurt, they're just annoying. So what's up with this Myopathy? Why does it feel like my thighs have been run-over by a truck? Why, on active days, does one calf muscle hurt and not both? So the journey begins ... why pain? How to relieve it? How to make it go away?

First pain meds were in order. I don't take anything heavier than aspirin or ibuprofen for fear of harming my liver and kidneys. Sometimes they work. Sometimes they do not. Either way, I find that remembering to take aspirin for a headache isn't even on the priority list until it gets so bad that trying to get through cooking dinner is a total impossibility. Then I pop two pills in the middle of making the salad and steaming the veggies. If it works great, if it doesn't, it's an Order in Pizza night.

Me, "Ok, then, I see you are taking up residence in my thighs and sometimes you travel to my calves and you may be caused by my meds but nothing has been determined as of yet. My doctors are totally stumped as to where you come from. That being said, I acknowledge you. I feel you with my every walk and climbing of stairs, I feel you when I sit and I feel you when I lay down. I still feel "most" of you when I take aspirin to try to suppress you.
I wanted nothing more when I was growing up than to be acknowledged for who I was.
Perhaps you need to be acknowledged too.
I see you.
I accept you.
And I would like to call you Lucille." I chuckle.

Perhaps dealing with pain is like the five stages of grief. First there is denial. "I'm not in pain. Not real pain." Then there's anger, " !!%$# and !&^*& and @!$^&*!!!" Then, of course there is the bargaining stage, "Ok pain, if you just let me get through today, you can have me ALL day tomorrow." Then there is the feeling stage, and one feels and releases the range of emotions about having pain. So here I am now at the acceptance stage. I sit down and contemplate how I am going to approach this new found friend of mine who has come to stay. Lucille has come to live in my legs for over three weeks and none of the bargaining, anger and waiting for it to leave has made it go away. In addition, aspirins aren't helping.

Pain, "Yes, Lucille would be fine! I am merely pain, I am not pain and anguish, pain and anger, pain and pride...I am ONLY pain.
I serve many purposes, and as ironic as it sounds, I am not here to hurt you. I am here to help you grow.
It is good you see me.
It is good you feel me.
I will not stay forever.
One day I will leave.
Until then, we cohabitate this body of yours and examine each other in all our beauty and purpose."
Me, "Ok Lucille, greetings and welcome to my body. Examine me if you will, and thank you for the opportunity for me to examine you. I used to fear you, resent you and use you as an excuse to hide in my bed. Walk with me today. Help me to understand the importance of taking care of this body, this soul of mine. Help me to appreciate this body which isn't invulnerable. Help me to learn when and how to rest without feeling resentment."
Lucille smiles and is just herself.

I learned how much I love my legs. They carried through so many circumstances, events, runs, walks hikes in the mountains, walks on beaches. My legs helped me ride my bike when I was a kid, helped me roller-skate and bounce through gymnastics and ballet. I rode horses, climbed trees and could do 1,000 kart-wheels in a row without throwing up!! Perhaps it was time to lovingly say "Thank you!" to my legs which had carried my body through so many days ...

And here is where it is amazingly spiritual or perhaps just simply weird, because just like that, Lucille went on her way. She disappeared slowly at first and returned for brief moments only now and then. Good-bye Lucille. Until next time dear. And thank you for everything from the bottom of my heart. I will never look at my body the same way or take it nearly for granted. I enjoyed my opportunity to reminisce on how much my body has done for me. I will say thank you much, much, more often.

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See Also
More on Pain Management and HIV/AIDS

Reader Comments:

Comment by: kratom (Bacolod, Philippines) Thu., May. 9, 2013 at 9:32 am EDT
It certainly made my day. It is such a pleasure to look forward to your blog. Excellent ideas and valuable inputs is what I always look forward to from your end.I am sure all the readers are going to find this extremely helpful and come back thirsting for more of this.
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Comment by: Kaposi Sarcoma (Trinidad) Fri., Apr. 6, 2012 at 6:51 pm EDT
Dear Mrs. Cozad,
You seem like a nice person, with a strong desire and will to live. I admire your battles, but conversations with your "pain"? You scare the living daylight out of me. Are you experiencing peripheral neuropathy?
I've been experiencing possible symptoms of acute hiv infection for almost 5 weeks now. I took bloodtests and i'm awaiting my results. I am a nervous wreck, and have been having dreams, visions, and other revelations which spell doom and gloom. I am not hopeful of a pleasant result, and I have no one to talk too. Please, I need some advice from someone who has been through this, and even a support group would be nice.
Reply to this comment
Replies to this comment:
Comment by: Shana (Tulsa, OK) Mon., Apr. 16, 2012 at 9:20 am EDT
Hi there!!
Please email me at motherearthblog@yahoo.com
I'll be happy to share with you what I have gone through.

Don't be afraid. Fear is the beginning of the end.
Smile at your challenges.
It will all be ok!!

Shana


Comment by: Mike (DC) Thu., Nov. 10, 2011 at 4:58 pm EST
I think I was crazy because of this pain. Some days, it is worse while at times, I can know it is here, but I'm controlling my reaction to it. The drugs given, put me to sleep and makes it hard to think. It's good to see pain is being seen as part of HIV, whether on meds or not, whether the HIV is controlled or not.
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Comment by: Larry Estrada (Wichita, ks ) Wed., Nov. 9, 2011 at 1:42 pm EST
You inspire me to be a better person every day every time we talk every time I read your Blog You are my true inspiration and I thank you appriciate and love you Big Sister I thank Creator for you everyday
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Mother Earth


Shana Cozad

Shana Cozad

Shana Cozad is a full-blooded Native American enrolled with The Kiowa Tribe of Oklahoma. She is also of Caddo, Delaware and a smidgen of French decent. Shana has been a noted, recognized public speaker, HIV/AIDS prevention educator and CTR counselor since 1994. Shana has spoken at numerous schools, universities, AIDS memorials, AIDS Walks and World AIDS Day events. Highlights include POZ Magazine, Keynoting for the 3rd Annual Circle of Harmony Conference and (Keynote for) the Mississippi State Department of Health HIV/STD Service DIS Conference and Update. Shana's story is also among the women's voices in River Huston's book A Positive Life. Shana is currently married to a wonderful lawyer and together they are raising three children in Tulsa, Oklahoma.


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