Chronic Pain Lifestyle

Endo Awareness Month

This topic was brought to my attention by a lady who just signs herself as "M". She sent a comment to one of my posts here and asked me to share this with those who read this blog. I have done a copy and paste of the post she made about Endometrosis which can be a disabling as well as very painful disease for women. It is Endo Awareness Month. You can contact her at cottoncandypink.blogspot.com.

Wanda

Thursday, March 15, 2007

March Is Endometriosis (the illness I suffer from) Awareness Month 

March is endometriosis awareness month. I don't write on here often or in much detail about my struggle with endometriosis, but I do want to take this opportunity to bring attention to this disease at least among those who read my blog.

Unfortunately, few people are even aware of endometriosis and fewer still have a real grasp of what it, what it does, and what it can do. Sadly, those who are assigned to treat the illness are almost always among those with a weak understanding of it. Since endo manifests itself differently in each patient, even those who do have some awareness of it often tend to view the illness in terms of its symptoms in the patient(s) they happen to know. But endo can affect its victims in many ways, from simply being present but causing no noticeable symptoms, to causing infertility but nothing more, to causing disabling pain and other serious symptoms. Similarly, treatment varies based on the patient's symptoms, and no one approach works for everyone. Even worse, there is no cure for this chronic illness and though some do manage to experience relief from it, many suffer from the symptoms for a lifetime.

Endometriosis is basically a series of growths that grow inside the body, usually in the pelvis. In some cases, the lesions actually travel out of the pelvis and into other body parts, such as a leg, the lungs, an eye, etc. The lesions often cause pain (some don't), especially if they are on sensitive areas such as nerves, ovaries, etc. They are often surgically removed, but because this is a chronic condition, very often they grow back, thus making surgically fairly useless. Oftentimes, as has happened with me, surgery (or even the endo itself) causes adhesions to grow inside the body. Adhesions are scar tissue that stick like gum and pull on the areas they are stuck to like a rubber band. If adhesions occur on sensitive areas, such as an ovary, they can be quite painful. Imagine a rubber band sticking to your ovary and pulling on it as hard as it can. It hurts!

Often symptoms of endometriosis are progressive. They usually begin as abnormally painful periods in adolescence (the kind that keeps in you in bed for days and require prescribed narcotics, not the kind that is uncomfortable or treated with Motrin or Advil) and often evolve to daily pain over time. The hormonal and surgical treatments regularly used to treat the symptoms of endo frequently cause further problems and in many cases do not control the symptoms.

Recently, studies have shown that endometriosis is more than the gynecological illness it's been thought to be. Immune connections have been shown and it is thought that endo acts like an autoimmune illness (where the body's immune system attacks itself) and those who suffer from endometriosis often suffer from immune disorder symptoms (such as joint pain, recurrent infections, chronic fatigue, etc.) as well.

Depending on where the lesions grow, endo can become quite serious. Endo on the bladder, bowel, or other sensitive organs can lead to a lifetime of problems. Often bladder surgery or bowel surgery (which is risky) is required and some end up with catheters and colostomy bags. There is so much more I could write about endo, but my main point is: endo is much more than the strong menstrual cramps it is often thought to be.

It is not cured by birth control pills (though you may know someone who experienced relief from it through that method, it doesn't mean they are actually cured--symptom relief does not mean their endo lesions are gone or that pain relief will continue long-term--nor does it mean this method works for all endo patients; in fact, it doesn't work for most of us which is why we go on to get surgery after surgery and see doctor after doctor) or pregnancy (same qualifier as info contained in parentheses above). Endometriosis is not cured by hysterectomy, though that does give some sufferers relief. Hysterectomy can also cause further problems, and all surgery can cause painful adhesions, and many women do not experience relief from any surgery including hysterectomy. I am one of them.

Also, many are misinformed about endo because they think they know someone who had it or think they themselves had it but that it got cured by ____________ (fill in the blank). But often those who think they had endo are wrong. The disease cannot be diagnosed by symptoms only. Nor is it diagnosed by ultrasound, pelvic exam, or CT scan. The only way currently to diagnose it is through a pelvic surgery (usually a laparoscopy) and to send the lesions to a lab for analysis. Many who think they have endo or have been told they have it have never had a surgery to confirm the diagnosis. New diagnostic tests are being developed but currently surgery is the only known way to identify endo.

I have occasionally been contacted by others who have endo or who think they do. If you or someone you know has or might have endo, I recommend checking out the Endometriosis Association. The organization has chapters across the country and support groups in nearly every state. If there isn't one in your state you can contact the Endo Association about starting one of your own. I have an extensive history with this disease and have tried treatment after treatment, from Western medicine to "alternative" treatments, to lifestyle changes and diets, to numerous surgeries.

I don't have any answers on how to get better since I am no better myself after all these attempts (in fact, I am worse as time goes on), but I am able to share my experience and knowledge for those who might need it. I don't know everything, but I know a good amount, and I have plenty of personal experience that somebody else might be able to learn from.

Please don't hesitate to email me (It might take me a while to respond, but I will respond, just make sure to put something about endometriosis or this post in your subject line so I don't delete your email as spam. You can find my contact information is in the sidebar.) or comment if you have any questions.

For everyone else, please try to spread the word about this disease and encourage others to get educated about it and to support the people in their lives who might be suffering from endometriosis or other pelvic pain (such as that which is caused by adhesions) and need support. You can learn more through the Endo Association Web site (link above) and you may also order wristbands to support the Association and to help get the word out about this misunderstood disease. Thank you for reading.

Things to Do with the Body He Gave You

    Special moments occur daily in my life.  Just today for example:

• I went to the Burke Rehab Hospital; I go twice a week, and "worked-out".  What that means is that I broke a sweat, burned some cal's, yacked with some of the folks, learned some new Tai Chi excercises that I'm able to do, and continued to make new friends.  My feet and ankles burned like the devil's own anvil.
• Did some small errands, like going to the bank and the store.  I caught my reflection in a mirror at the supermarket.  I was smiling.  My toes went from numb to super-sensetive.
• I paid some bills.  laughed at myself when I put a stamp on an envelope upsidedown.  Wrote a coumple of thank you notes and sent an apology that was long overdue.  The arches of my feet hurt; it felt like someone was jabbing me with knitting needles.  My lower back was aching.  I'd been sitting too much.  I put on a Lidocaine patch.
• I went to the shrink.
• I checked my calendar, the one one my Treo.  The whole thing was blank.  Kids, again.  At one, I was tired and lay down.  I nap every day.
• I woke-up and sent some emails.  The stimulator in my back is a God-send; I cranked it and fell back asleep.
• Didn't watch any TV today, but I did have a tuna sandwich and smoked a few butts.  My ankles and toes were kicking (ha,ha) up a fuss.
• I read. I'm a voracious reader of eclectic taste.  I'm reading history.
• I'm posting.  I stopped for a while because I'd gotten bored, now I've got all of these bottled-up thoughts.

     I wrote this in this style just to see what it would look like.  When I think about it, I could fill-in many more interesting things that fill my days.  This happens to be a boring day.

  Despite the incessant pain in my feet, legs, back and the overwhelming exhaustion I feel every day.  Now, unlike before when I was too busy feeling sorry for myself to do anything, I do things every day.

   My body's pretty messed-up, but He gave me one and I smashed it up.  I expect that he still want's me to do something with it.  For crying out loud, it's the model made in his image; I better get busy.

   After all, He knows my name.  God bless, Colin

Get Ready for Christmas

    I notice about this year and the past couple, when I became disabled, that this season although unseasonably warm, brings to my life good cheer, beauty, and hope for the new year.  Not much of significance changes from Christmas to Christmas.  Every Christmas is festive.  People are nicer.  Everyone seems to make an effort to spruce things up, and decorate.  Heck, even my local newsstand looks pretty; lights are blinking along the top of the Instant Lottery scratch-off tickets display.

     Getting ready for Christmas...lots of shopping...crowds at the mall. Last minute plans to visit my folks.

     Although it looks more like March than December, I can visit the snowy Christmases of the past.  This is my 47th.  I'm at or past that midpoint, now.  Forty seven more will mean I lived into my mid nineties; if I make it 'til then, God willing, I'll be a Great Grandfather and probably waiting for my Red Sox to match the heroics of that great team of '04.  The year will be 2063.  My wife will ask me if I remembered to pay the phone bill.

     I'll have a new home.  I hope it will overlook the ocean and that I'll have a porch.  I'll drink coffee and read the paper in the morning. Before lunch, I'll sit in my rocker and shoot my hunting rifle at the whales.

The Worst Day of My Life, by Zac, age 11

      These are my son's words.  He's eleven years old.  This is how he remembers what he considers the day I hurt myself.  He didn't give this essay to me; he passed it in at school.  He gave me permission to show it to you.

     "It was a cold December day...the day that ruined my life.  My mom had just left with two of my three sisters to go see a Broadway play.  It was about two o'clock and I was home with my dad and my sister Molly.  'Zac get over here,' my dad barked.  I had no choice but to obey.  "We're cleaning off the roof,' he informed me.  That's where the real trouble started.  My dad started leaning out the window whacking away at the cold frosty icicles.  I wish I was one of those icicles being whacked to my death so I wouldn't have to experience what is now me my dad and my family's painful life.Just as I was daydreaming about sports I heard the first groan.  I quickly rushed over to the window where my dad was. 'Are you okay dad?' I asked.  'Yeah, I just felt a sharp pain in my back but I'm fine.'  Dad don't do that anymore I thought, but I didn't have enough courage to say it.  About an hour went on and the roof was almost clear except for the icicles my dad couldn't reach.  So he went outside and threw the broom at the roof for about ten minutes, then he fell over in pain.

     "For two months after that my dad was in horrible pain.  When I asked him what the pain felt like he said, 'It's like having a migraine headache every day, and on your good days it's like just having a bad headache.'  He had trouble walking and getting around to places, so he lay in bed as soon as he got home from work every day.  We helped out as much as we could.  Then suddenly his hours at work got shorter and the pain started getting worse drastically.  He started seeing doctors and they gave him medicines that did zip nada zilch NOTHING.  Then he had two failed back surgeries which did not only not work, but they made things even worse which I personally couldn't see happening.

     So this was pretty much the worst thing that ever happened to me.  The thing that made me want to quit life and burn in hell.  It was like this for two years until my dad had to quit his job because he couldn't sit down for twelve hours a day and he was in too much pain so now he is home on disability and can only do a few things.  He tries to go to all my sports games because that makes him feel better, and it makes me feel better too.  But what happened to my dad is not all negative.  The positive things, although not many, are that it has brought our family closer together.  Even though we can't travel, we spend more quality time together than you could even imagine.  Second, I look up to my dad now because even though it feels like he is getting stabbed in the back (literally) every second of his life he still does stuff with us and I look up to him for that.  My oldest sister is applying early decision to Columbia University and she wrote about my dad in her essay, and how he was the most important influence in her life, even though he has so much pain.  That was a thing that made him feel better.  I really love my dad."

     I really love my wife and kids. God bless, Colin

Words Won't do Much for These People:

     Did You happen to read this comment:

          I AM TRYING TO FIND MEDICAL COVERAGE THAT IS AFFAORDABLE. I CANNOT PAY THE COBRA FEE. I AM 61, A
NURSE, 31YEARS. WORKED FULL TIME THROUGH 9/06. I CAN'T FIND HELP. I FALL THROUGH THE CRACKS. I AM TOO OLD, TOO YOUNG, ETC. ETC.

     Or how about this one:

          I can relate to all these stories. My Daughter says that I've always been so independent that maybe this is Gods' way of teaching me to rely on others. I live on 940.00 a month disability and get 12.00 in food stamps. I have no insurance, so all my DR's visit's have to be cash. I have always worked, raised three kids without help from the Government. I take five medications a day ad those to are cash. I feel as though the Government is much more interested in helping people that have never worked and never will than those of us that have. God Bless you all.

     There isn't a word I can write that will make a damn bit of difference to these people, and the many others like them. 

     Action, not words!  First step: drop a line. God bless, Colin

Permission to Act Out...Permission to Insist on Your Rights

       How many husbands and wives escape the bondage of anger?  Any?  Normal children rebel against their parents; it's part of growing-up.  I fed-up with head-shots and body blows from my kids.  I see the cause, and understand it.  I'm bothered by the anger, no rage, that is an undercurrent within my family.  I think that if we were all just a little more concerned about what we're doing and how it affects dad, the guy in constant pain, the family would be happier.  Hell, I'm the one in constant pain around here.

     This truckload of self pity that I hoist around is among the more dangerous feelings I experience.  I've never done the one thing that might actually move us, the family, past this junk.

     As of today, I will look in the mirror and do the human thing.  This morning I said to myself "Why me?".  What did I ever do to deserve this life of chronic pain?  This sucks.  I struggle with my faith yet still have now given myself permission to say, "God's plan or not.  I don't have to like it.  It's not frigging fair.  Not only do I suffer, but my wife does , too.  My kids do, too."

     My family now has permission to be mad.  I had visibly suffered, then held their happiness hostage because I can't be fixed.  I told each kid that it's okay to be mad.  I told them that it wasn't their fault if I didn't feel well.  Lets get together kids and instead of feeling sorry for me or feeling pity, let's just get pissed-off.  Yell your head off.  See if you can scream louder than me.

     To my poor wife, of whom I expect complete and unconditional understanding, tell me this totally sucks, and that our lives are now indelibly changed.  Those great plans, well...put them to the flame.

     It has to be the case that until or unless we become completely honest about how we feel, we'll never get by this place, which is hell on earth.

     I think that once we stop pretending that everything is okay, nothing will be okay.

     My wife and kids must know that they are allowed to have expectations of me, and that I'll do everything in my power to meet those expectations.  How else could they ever respect their father.

     A saccharine life is no life.  Let's pretend it's real sugar.  This doesn't work.

     Heavenly King, I'm where I am for some reason I don't understand.  I don't like it.  Please give me the strength to do Your will.  Give me the wisdom to say the words You want me to say.  But dear Jesus Christ, don't expect me to like it. Amen.

     FYI.   Plans are moving forward quickly to create an action committee.  This committee is for each and every disabled American who believes that we need to have our special interests driven in Washington.  It's frustrating that so many of us accept the status quo as our due; it's not!  Please voice your support, unless you feel your interests are adequately represented.  A group of individual, action in concert created this great nation.  As individuals we have little power, as a group, we have a lot.  Drop a note, post a comment, get involved.  Whining on a chat board is a poor substitute for real change. WE WANT OUR PRIVACY PROTECTED.  WE WANT THE RIGHT TO RECOVER.

     God bless, Colin

The day God asked for my help, I said no, PART II...

      The story that I tell is of course me; it's not one that shows me to advantage, that's for sure.  It's a little story about a littler man.

Now having dropped my drawers, there's only one thing left to do: pull them back up.

Here's what I learned: God doesn't leave us alone when there's work to be done. He's right there with us, and when called upon by circumstances to speak or act his loving, guiding hand empowers us beyond our human capabilities.  Even when we can't do as he would, he allows that we do enough, maybe just enough, so what we see is that we feel filthy in his sight.  I remain filthy still but I've seen his love.

     If I just look closely, His love is there for me to see every day.  It is hard for me to believe that on that day, in that office, with me in the shape I was in, He tapped me to help another if his children, Billy.  Did I really say no.  I meant to hurt Billy, to shut him up. I had no intention to do any good.

     God had different plans. I don't guess at God's plans any more.  Yes, I believe that God loves us, even in our filth and unworthiness--that was me, and that is me.  But he forgives and saves.  Did he speak through me? Billy thought so, I do, too.

     I should be careful not to dramatize, but I'll risk it for clarity.  He's in me, you too. As concerns the title...THY WILL BE DONE...would be more apropriate.  As clay before the potter, I didn't even have an opportunity to say no, any more than than the clay has an opportunity to say to the potter, "I think I'll be a vase". God Bless us all, Colin

The day God asked for my help, I said no...

      A preface:  as a young married man I lived hard.  I drank myself nearly to death, was resentful of everyone who I perceived didn't have to work as hard as I did; lived my life of rage and fear with a violent intensity. I'd trampled all of my friendships, pushed my trusting and loving wife so far from me that her next step would be back to the safety of her parents.  I drank to feel good, to celebrate, and I drank to drown my pain.  I'd broken a promise to my baby child, the last decent one I had to make, that at least I'd be a good father, and knew that I was just a husk of a man.  Bled out, and marking days until one of the inevitable occurred: death, an institution, or prison, I believed that God had marked me down on the damned list. I didn't even care.  That I still believed in God made the story you're reading possible.

     I worked in NYC, in a nice office, soon to go, and like many young exec's had perks. Everyday a man named, Billy, would walk the office floor shining our shoes. On this day, I was in the early going of alcohol recovery, which I don't believe I have the strength to ever experience again.  It's so brutal, that most people who are like what I was like, do it in a hospital under 24 hour watch, for several months.

     Anyway there I was sweating and twisted nice and tight.  Billy was shining my shoes and talking to me about his life, My head felt like it was split down the middle. Other times, when I'd already have had a half a bag on, Billy and I would have been chatting, most likely about the Bible.

     I studied philosophy in college and had done work on comparative religions, so I knew the Book fairly well.  We used to talk quite a bit about both the Old and New Testaments. He was a lay minister at Pentecostal church in Queens.  He knew his stuff, and I was respectful of his beliefs. This day, I didn't want to talk.  But Billy sure did. He was wearing a ridiculous tie because later that day he was going to be in family court.  My temper was getting shorter and shorter as he spoke, not because of what he was saying, but I wanted him to hurry-up and leave, just shut up so that I could be sick in my wastebasket.

      Billy continued to blab, on and on, about how the Good Lord, Jesus Christ would give Billy his child.  Billy was not married, except in the common law sense, and his wife was a crack whore anyhow, and according to Billy never home to take care of his child, one of God's children. He described his wife as evil. BILLY JUST WOULD"T SHUT-UP!!!!

      I'd finally had enough. Perhaps if I just gave him the benefit of some good common sense he'd shut up, particularly if I used the Bible against him.

     "Billy, You pray to Jesus so that He'll give you back your son?"

     "Uh huh",he answered.

     "And you think any right thinking judge will take a child from it's mother and give him too you. YOU'RE NOT EVEN MARRIED! YOU HAVE NO PROOF THAT THAT KID IS EVEN YOURS. YOU DON'T EVEN HAVE A JOB!!!!  BILLY, WHAT DOES THE PRAYER SAY?!!!"

      Billy looked sad. It was working, "What prayer", he asked.

      "The LORD'S PRAYER it says'...thy will be ,done.' It doesn't say Billy's will be done!"

       He stopped buffing my shoes. His big sad brown eyes cut my like broken glass through skin, "Brother," he said, "He's speaking through you."

      Then he hugged me.  "Colin, I know you hurt, and I know you don't really mean to hurt me. But you're right. 'Cause that's how He works, though people. Sometimes, even when we just bein' mean. He speak right through us. He spoke to me through you."

     I think I cried, too. God grant that some poor soul knows what I'm talking about.  I don't like to tell this story. I did pray that He might make me aware next time, so that I don't always have to be a jerk, God bless you all, Colin