Pain

Pain, vomiting , pain, doctors, pain, diarrhea, pic lines, loss, pain, tests, needles, doctors, living in the bathroom, surgery, frustration, let down, tears, loss, vomiting, hospital, reading of others with the same struggle (tragically some giving up and taking their lives).  More tests, doubt, feeling like a am a guinea pig, passing out, traveling, severe pain, questioning myself, drugs, doctor visits, tragic loss of my dear mother, discouragement, pain, bed ridden (at times), trying to find answers ,any answer.  Trying to find a doctor specialized enough to help, vomiting, pneumonia, 13 long hospital stays, doctors, numerous surgeries, hope deferred, discouragement, grief, pain,…..That is how I remember the last five years.

But I also remember..
Prayer, fantastic family, awesome friends, supportive church, incredible neighbors, generous people, unmerited favor, words of encouragement, loved ones (too many to name) fighting the fight with me - writing letters, holding my hand, researching, giving me a place to stay, wiping away the tears..not giving up).  Able to keep my house, answered prayers, writing and playing music, my amazing dog, long talks with my brothers (who live all over the globe), family visiting, people donating time – cleaning, mowing, providing food, building a deck, etc.  Enjoying a movie, a hug from my Dad, laughing with friends, a foot rub etc. 

I have been diagnosed with a severe intestinal disease - invasive endo (stage 4) with complications.  If is extremely painful and difficult at times.  However, it is so important to keep a flicker of hope, look to God, be peaceful and try to keep your spirits up.

Letters to Survivors - EndoCenter

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~The Sentiments of Millions of Endometriosis Survivors Around the World~

- written by the EndoCenter

Dear Parents, Partners, Friends, Families, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer.  We are asking - again - for your understanding.  We are not responsible for failing to live up to your expectations, the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities.

We are not "lazy," we are not "whiners," we do not make the pain up "in our heads."

We have Endometriosis.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our every day appearance. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our emotional well-being.

When we call in sick, it's not because we need a mental health day or to "go shopping." It's because we can't get out of bed from the pain.  Do you think we like letting our careers suffer?  Would it be easier for you to understand if we said we had cancer and looked the part?

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are "flaky women."  It is because we are taking drug therapies to stall this incurable disease, or perhaps it's because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.

When we can't have intimate relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.

When you, our parents, can't understand that since you are healthy, we should be too, but aren't - try harder. We don't understand it either. We need your support more than anyone's.

When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free.  We can't have a nice time with our children (some of us); because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our genetics onto our daughters?

When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of Endometriosis than even we are. You are appreciated more than words can ever say.

Don't give up on us now.

As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is "normal for a woman to hurt." Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down.  We want answers and it is your job to provide them. You were the ones that took the oath to heal - why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families?  We're not drug seeking; we're answer seeking.

Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with some days. We face a society daily that doesn't even know the word "Endometriosis," much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us "it's all in your head", and "have a hysterectomy, it will cure you", or "get pregnant, it will cure you", when we know that it won't and have been dealing with infertility for the last however many years.  Can't you see that?

We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves and travel thousands of miles to the rare specialists that are few and far between.  We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why.

Endometriosis is a disease that affects all of us.

Take the time to learn about it and understand. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, pain-free life. We can have healthy relationships with our loved ones. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again.

Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.

Whatever doesn't kill us makes us stronger, someone once said. While Endometriosis may not kill our physical body, it tries like hell to kill our spirit. It tries to kill every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...and we are holding our heads high in spite of Endometriosis and fighting it every single day.  We are asking you to take part in that battle and work with us beating it.  Wouldn't it be nice to have back the daughter, wife, friend or loved one you once knew?

Think about it.

http://www.endocenter.org/

The Pain...

I don't think anyone can really understand what Maria has been going through the past five years with intestinal endometriosis.

Endo....is a disease.  Tissue normally found in the uterus is growing IN the body OUTSIDE of the uterus where it does not belong!!!!!!

I worked with Maria.   I showed her the ropes and office procedures when she first came to work for the same company that I worked at more than ten years ago.

I recall there was one company event where Maria passed out in the bathroom - unconscious - from severe abdominal pain - God knows how long she lay there all alone. None of  us knew about the incident until many, many, many months later.  How embarrassing and humiliating that must have been.

Even though I took a different job in another town in 2002 Maria and I kept in touch.  I moved back in December 2004 and  we re-connected in the summer of 2005 with lunch on several occasions to "catch-up".

On May 31st of 2006 my son died at the age of 26 years old.  His funeral was to be held on June 5th, 2006.

At the very same time Maria was on a business trip far away in California.   Maria became extremely sick with horrific pain, diarrhea and projectile vomiting....it became so bad that Maria took herself to the emergency room.  And was admitted with a small bowel obstruction and treated with a high doses of steroids, which dissolved the obstruction found in the scans. This hospital stay was for ten days.   And to top if off, she lost her job because she was hospitalizeed for soooooo long.

Despite the fact that Maria was hospitalized  in terrible pain,  she still sent me this wonderful, and thoughtful email: 

on 6/4/2006 Maria wrote:

R,

I can not believe it!!  

I AM SO SORRY FOR YOUR TERRIBLE LOSS! 

I am in S. Calf. right now otherwise I would be there tomorrow. (for the funeral) 

Please know I am praying for you and your family. 

I have asked my family around the world to pray for you all. 

I love you R, if I can do anything to help please call me.

Maria

The months after my son's death were a very dark, painful and depressed time for me.  The depression made my whole body hurt so much that I thought I was dying.

Maria was a tremendous friend to me at that time in my life
.........despite the fact that she was seriously ill, in and out of  several hospitals, having medical tests, getting no answers, in severe pain, frustrated, on pain medication and steroids, had many more tests, endured surgical procedures, became dehydration, had severe reactions to medications, was referred to yet another doctor, and had to deal with perplexed doctors that could not figure out the "why".   This was just the beginning for Maria.  She has been in and out of hospitals so many times that I have lost count.   Fortunately, she keeps a great medical history of all the things that she has gone through.

She has seen so many different doctors I don't know how she keeps their names straight.   And the latest being rejected by other doctor - wow what a low blow to the ego that is.  Yikes!!!  

But the pain continues............pain is very personal.  Some of us can tolerate very little pain and others can handle mega-does of it.   The pain is just the tip of the iceberg called endometriosis.

I was reading the Mankoski Pain Scale the other day.  And I can say from first hand experience on the numerous times I have visited Maria at home or in the hospital that her pain has to be a combined rating of 7 to 8 on the Mankoski  Pain Scale on an "average" daily day...

7.  Makes it difficult to concentrate, interferes with sleep.

8. Physical activity severely limited. Nausea and dizziness set in as factors of pain. 

And many times she has pain so severe (9 and 10 ratings) that she is

9. Unable to speak. Cries out, moans, and is near delirium.

10. Unconscious...the pain has made her pass out.

I know that I could not endure "her" pain day after day after day like she does.  I know that the painkillers help but the pain NEVER EVER goes away.    This is no way to "live".

Maria is so grateful to ALL of her friends that help her daily take care of  the "everyday" things that NEED to be done since she is bed-ridden with so much pain.

Maria can not do the daily things that you and I do.......get up, fix breakfast, get ready for work, drive to work, work for eight hours, drive home from work, fix dinner, etc. 

There are so many women in the United States alone that have this kind of debilitating endo pain.  Maria is not selfish in wanting to find answers for herself as she knows her answers will help scores of other women.

Maria's vision is to use her pain and suffering to help others have answers.   She does not want her suffering to be in vain.   Maria wants other women not to have to go through all the procdures that she has gone through these past five years.   I have read stories of numerous women that have been in pain with endo for five years, nine years, fourteen years, even twenty years.   That's unconscionable.  Edno needs to stop.

It pulls at my heart strings to hear Maria say "I want my body to go to research when I die".   This is a very noble thing for Maria to do.   Maria has been rejected by so many doctors because her disease is at such an advanced stage.   Her case will definitely be a major contribution to research journals; so I can understand her wanting to hep others by donating her body to research.

But all avenue's of help for Maria need to be exhausted first.
  

Maria has been referred to a Doctor in New York that might be able to help her.   She needs your help to get this Doctor to take an interest in her specific case and agree to see her...... as Princess Leia would say "it's our only hope"  at this juncture in Maria's plight.

Please keep Maria in your hearts and prayers ...Keep reading this blog, pass it on to others, and  believe in miracles!

It is my hope that this blog will get Maria's plight out to other readers, all woman, and doctor's in the endometriosis field so that advancement can be made to help all the women suffering from such a terrible disease.

Please pass Maria's blog along to others you never know who it might help.

RSD

  Montana

A fallen sister

http://www.livingwithendometriosis.org/category/suicide/