I am a woman in pain. I have lived with trigeminal neuralgia, a facial pain disorder, for over 30 years.
I am very lucky, the worst part of the pain, severe constant and sporadic, lightning sharp pains, is gone but I remain with severe eye usage and movement pain.
I have experienced firsthand the discrimination women experience when they go to a doctor complaining of chronic pain. Pain is invisible, making it hard for some to believe/accept but doctors are there to help not to judge. Sadly, too many women, and men also for that matter, find they have to justify and defend their pain when they go for help.
I started Women In Pain Awareness Group on facebook but also hope that this blog will be a place for all to tell of their pain experiences, and life experiences while living with pain.
We have a choice: the pain can control us or we can take control of the pain. We can become victims of the disability pain causes or we can become the boss.
Subscribe to:
Post Comments (Atom)
Hi there carol nice job How so i join??
ReplyDeleteHi Cathie, Thanks. ((*_*))
ReplyDeleteFor facebook you mean? Here is click:
http://www.facebook.com/group.php?gid=111961795481256
Easter and Passover are here. Time for time with family and friends.
ReplyDeleteBut it is also a time when our pain can be made worse. The weather has changed, that often causes upswings in pain and now we are in places and positions where we may or will be called on to do things that we know will make the pain worse.
If we are lucky the people we spend this time with, or any time as far as that goes, accept our pain, and the disabilities and limitations that are a part of it. If not the holidays, sometimes a time of stress just on general principles, can become a time of nothing but stress and pain.
You know the saying, you can pick your friends, you cannot pick your family. The same is true for being with people who accept you and that includes your pain.
If you know the people you will be with do not "accept' your pain, prepare yourself beforehand.
Arm yourself with not only enough medication but also stress relieving exercises, such as slowing your breathing or meditation(s). If you are physically able practice muscle relaxation exercises, tightening as hard as you can for as long as you can then quickly letting go of the tension.
There is only one person who can truly take care of us when we are in pain. Others who do believe us, who accept, us and hopefully, even love us, can give us all the support we need but we alone are in charge of our bodies and giviing them what they need.
Now is the time for reflection for Jews and Christians.
ReplyDeleteWhat does this have to do with being chronically pained? I think of it because recently I heard someone say they saw their pain as a 'blessing'. I am not sure in what context they meant it but it made me think about how I feel about my pain.
I will never see my pain as a blessing but strangely many people think it is, in a way, a blessing for them. "Compared to what you have", they say, "how can I complain about my pain (or my cold, or my sprained toe, etc.)?"
I hate when someone says that but really hate is too strong a word; I understand when people say it. It makes them feel better, 'my situation is not so bad, not when you consider what she has gone through'.
I have to admit I think it when I hear someone say they are or will be going through cancer surgery, radiation, chemotherapy, or is paralyzed and so on. Compared to that, my situation is nothing.
I remember a time when someone told me about a person they knew who had gone through 13 surgeries for cancer. "Oh My G-d," I replied, "I cannot imagine someone going through all that."
"But you have had 11 brain surgeries for your pain." my friend replies.
Yes. I have. But that is different somehow, my thinking goes. It was only for pain. Somehow my truly awful experience fades in comparison to the other person's travail.
Almost everything in life is used as a yardstick. The expression 'keeping up with the Joneses' embodies the idea. I am only poor if I compare myself to the rich, I am rich when I compare myself to the poor. I am ugly compared to that supermodel. I am pretty compared to that person over there with the crooked nose.
I just found out I have a small area of skin cancer. A friend died a few years back from major cancer in a number of areas of her body. Skin cancer is nothing, not compared to what my friend endured.
Do I do nothing because my comparison with her makes it seem less - insignificant even? If I rely solely on the comparison, probably. If I accept my cancer as an important issue for me, if I accept the pain as a part of my life, not worse or better than someone else's problem, it is still not, for me, a blessing. It does, however, becomes mine to own, not a yardstick by which others or I decide how bad my situation is.
I hope this holiday brings blessings to you all.
Very interesting reading. Looks like your Blog is working for you - good job and keep it up. Spread your link through organizations, etc. Google people and organizations & associations to get your link visibility.
ReplyDeleteHere's my blog: http://oakmanheadhunting.blogspot.com/
ReplyDeleteHey Steve, thanks I'll head over there (oh sry, no pun, ah what the heck...)
ReplyDeleteI hope so, having trouble getting folks to come. There are a bunch of chronic pain groups etc that seem to be fighting for people over on FB. Im hoping that at least after the holidays this blog, and my group, will continue to grow and get some people really contributing.
Ive never heard of google people. Ill have to google it.
Thanks for the advice. You are most definitely more internet savvy than I.
You have a great site. Very professional (so I didn't want to add personal comment on it.)
ReplyDeleteI was invited to friend's home for Easter. Actually i do not know them well, only slightly from Church but they are a lovely couple who has 'adopted' another church member who is without family and has held out their hand to me also.
ReplyDeleteIt is a wonderful thing and yet, as I contemplate
going over there my pain worries get in the way.
My face was paralyzed during one of the brain surgeries. (A microvascular decompression or Jannetta procedure, named after the doctor who somewhat invented it and who was the one who paralyzed my face.)
I am uncomfortable eating with new people. I keep a mirror by my side and am always checking to see if food has gotten on my face. As a result I enjoy myself less not only because of that but because i take less food, worried about the process of eating.
The left side of my face has tightened, as a result of the muscles not working properly, and that makes eating and talking for any length of time unpleasant for me. It pulls on my eye as I use the face and that is where the main pain resides.
I face this lovely invitation with worries, can I eat comfortably, will other people (total strangers to me) be there, will it be messy food and the biggie, will I have to take a lot of narcotic to get through the day?
I have a choice. I often forget that I do.
I can worry about what the day will bring; will it bring pain? Or I can put that concern away and look forward to the kindness and enjoyment of the day, looking at the pain as a part of me, not something about which I need fret way before time but something that, if it happens, I can deal with. At the best it will be negligible, something I can handle and in the background. At the worst it will still be something I can handle, maybe not in a way I want; I hate the feeling of the drugs, but still having control over it, by taking medication, by changing what I am doing - stop talking, just listen and nod for instance (or if it was a body pain - move to a more comfortable chair, stand, walk about, excuse yorself and lie down for a bit if that is what will help)or if necessary, leaving early.
Bottom line - I have to learn to enjoy being in the moment, another way I can be in control of the pain and not the other way around.
"The most intimate emotion two people can share is neither love nor desire but pain."
ReplyDeleteWhen I read that sentence in the novel THE SURGEON, by Tess Geritsen, I was stopped in my tracks. The character was referring to emotional pain but those words have an interesting twist when used in the context of chronic pain.
Too many people have told me, "My spouse doesn't get it." "My boss refuses to accept that I have limitations because of the pain that was not always there." "My (sister, cousin, aunt, friend, coworker) doesn't understand/refuses to accept when I say "I can't" do whatever it is that my pain stops me from doing.
For some reason chronic pain is not the kind of pain that two people are able to share. It is invisible and every sensation is unique to the person experiencing it.
My family was never there for me and never accepted that my pain was real, even after the 11 brain surgeries. It is a strange thing. Do they think that a neurosurgeon operates just because a patient insists? Do they think being disabled, having pain day in and day out, being unable to work is fun or a way out of life?
I do not know, just as I do not know why other people with chronic pain have to fight being believed about their pain and disability.
I would never wish on anyone the pain I had, or have now. I think none of us would ever want another to feel the physical pain we experience on a constant basis; but I think many, most, of us with chronic pain wish that we did not need to explain ourselves.
My friend, Jennie (pseudonym) who had the lung cancer had an interesting experience with her doctor.
ReplyDeleteJennie went to her general practitioner complaining of a cough, fever, and generally feeling bad. Chest x rays showed she had a pneumonia.
The doctor ordered more films about 6 weeks later to see if the pneumonia was completely resolved. The spot remained but the doctor thought it was related to the pneumonia, maybe an area of infection or just a remnant. "I am sure it is not cancer so don't worry." she advised my friend.
Jennie returned to see her today for a follow up appointment after the cancer surgery.
"I do not see patients the same way anymore. I was so sure you did not have cancer. I will be paying much more attention."
I think too many chronic pain patients, especially women, have had this experience. The doctor decides we are making too much of our pain, it is not as bad as we say, the symptoms he/she can see do not mean all that much individually so the physician does not take the time to put them all together. It might not be a killer, like Jennie's could have been, but chronic pain can be a murderer all on its own, either just the pain itself, killing spirit and life day by day or a more insidious executioner that can be held at bay, such as lupus, rheumatoid arthritis and others that, the earlier they are caught, the better the treatments and treatment outcomes.
What saved Jennie was her tenacity. She refused to be placated by her doctor's reassurances and insisted on further tests and follow up. That may have well saved her life.
We need to be Jennies. We need to speak up loudly and strongly, fighting if necessary, to be heard and to get what we need from our doctors. And if they refuse to hear us or belittle us or treat us like children we need to have the courage of our convictions and find a doc who will listen, and act as healer.
Here are some other pain blogs:
ReplyDeletehttp://www.healthboards.com/boards/forumdisplay.php?f=100&gclid=CIP4grzT96ACFYGV7QodvBJWvg
http://www.everydayhealth.com/blog/life-with-chronic-pain/
http://www.howtocopewithpain.org/blog/
http://dolor.blogspot.com/
http://chronic-pain-nightmare.blogspot.com/
http://jackbauerdeclassified.typepad.com/
http://pain.about.com/b/
http://www.completechronicpainconditionorganization.org/articles.html
http://www.peoplearetalkingabout.com:8080/Blogs/index.jsp?subject=Chronic%20Pain
http://www.easingchronicpain.com/
http://fibroresearch.blogspot.com/2006/12/chronic-back-pain-linked-to-changes-in.html
http://chronicchicktalk.com/2010/03/chronic-pain-makes-people-desperate/
http://www.blogcatalog.com/blogs/dont-hear-i-shout-you-a-chronic-pain-blog.html
http://www.chronicpainsupport.org/
http://www.medscape.com/viewarticle/719677
Hope you found these sites interesting,
Steve Oakman
Steve, that's wonderful!! Thank you for taking the time to do this. M((*_*))M
ReplyDelete"How much does anyone really know about the person sharing his bedroom?" asked the district attorney in an episode of Law and Order I just watched.
ReplyDeleteThe remark was related to a defendant who turned out to be very psychiatrically ill, her paranoia resulting in her killing her college roommate.
What does that have to do with women in chronic pain?
It reminded me of the folks who refuse to believe us.
I am being somewhat redundant, coming back to a theme already used - but it is one I have no doubt I will be revisiting a lot.
It is an irony that our pain may teach us more about those we know than anything else we have every shared with them.
A husband so loving and caring, a cousin so sweet, sisters and brothers acting like good siblings. And then we become chronically pained.
The thoughtful husband grows quickly tired of his wife's complaints of pain, of the "I can't's", of the 'I am in pain, when will it stop?' The same for the other people in our lives.
It is hard for me to find positives in having the pain, in being alone through the majority of my fight. But positive there is. The positive is that the chaff is separated from the wheat, the caring from the 'I am here as long as it isn't hard.'
The pain can be the most defining moment for knowing who is that person; the one we trust, we share our bed with, our secrets, our lives.
The ones who remain are the ones who deserve not only to share our space but to have the pleasure of having us in their lives.