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Michelle L. Torigian

Tag Archives: Endosisters

A Prayer for the Flare

07 Monday Aug 2017

Posted by mictori in Life, Pop

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chronic fatigue, chronic illness, chronic pain, Endometriosis, Endosisters, fibromyalgia, Prayer, prayer for chronic illness, rheumatoid arthritis, spoon theory, spoonie

battery-1049668_960_720

For my friends in the “Spoonie,” or chronic illness, community…

God who rides the roller coaster of life with us,
There are times we endure a flare of our subpar health.

Sometimes the flare lasts a day or an hour.
But during that time we experience our own agony-
Our own hell on earth.

Twinges and spasms and aches and overcoming pains keep us silent and still
When all we want to do is move.

Just last night our bodies were cooperating,
And today they revolt against us.

God, our bodies have driven our lives to the land of unpredictability.
We no longer have “spoons” or battery power or energy to keep moving throughout this day-
But we’ll keep pushing as long as we need.

So we turn to you.

If you can refill our cup so that we feel strong again, fill the cup.
If you can rearrange our schedule so that we don’t feel guilty about resting, rearrange the schedule with a touch of your grace.
If all you can do is sit with us in our pain, we are grateful for your presence.

We look forward to the time when our batteries are at 100% again and we can move about our days.

Amen.

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Ash Wednesday and Human Fragility

02 Thursday Mar 2017

Posted by mictori in Church Life, Current Events, Health, Pop

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Ash Wednesday, ashes, Clergy, clergy self-care, dust, Endometriosis, endometriosis awareness month, endoperson, Endosisters, fragility, Grace, Healing, laparoscopy, mortality, post laparoscopy, post-laparoscopy reflection, progressive Christianity, recovery, self-care, stage 2

imageToday, I was reminded of my fragility.

It didn’t happen at an Ash Wednesday service.  I wish I could have led one today, immersing my thumb in oil and ashes, looking into the eyes of fellow humans, and reminding them that we come from dust and we will head back there again later in our lives.

Instead, I got my own Ash Wednesday lesson in the form of pain, shots, and a nod to my human frailness from a nurse practitioner.

As I’ve mentioned on this blog a few times recently, I had surgery for my endometriosis.  While I was expecting the recover to go much like it did last time (SWIFT!), unfortunately, the amount of endometriosis and adhesions were greater so more tissue needed to be removed.  That usually means that recovery will reflect the heightened intensity of my endometriosis and what needed to be done during the surgery.

I didn’t return to work on Tuesday.  The pain was bad.  I had a low-grade fever.  And because of all of the discomfort, I met with the nurse practitioner in at the doctor’s office.  Tarodol shot #1 happend on Tuesday, but it didn’t help much.

Sleep was restless, but I was going to be a delusional hero and push through.  Even as late as Wednesday morning, I was intending to go to the Ash Wednesday service.  Earlier in the day, I was still in pain, having problems sleeping and then needing to sleep.  I called back into the doctor for a third day in a row.  They urged me to come back in for my second Tarodol shot in two days for the pain.

While in the office, I saw the nurse practitioner.  Reflecting on our conversation from Tuesday, she noted that I needed to take the extra time to rest.  “For the first surgery, taking one week off to recover makes sense.  For your twenty-fifth surgery (she meant third), you need a couple of weeks.”

Noooooooooooooo!

Laparoscopic surgeries for endometriosis aren’t like knee or shoulder surgeries.  You don’t have wraps or slings or crutches.  Under my shirts and comfy stretch drawstring pants are three fresh scars.  That’s all I see, and others don’t see any of that.  So I don’t look that bad.  And I still don’t know what my insides looked like during the surgery.  I’ll see pictures next week.  In the meantime, I just see three healing scars.  And what I forget is that I may have healed well on the outside, but my internal cells, tissue, and organs are trying to achieve full restoration. .

I look back at my previous laparoscopic experiences.  After my first laparoscopic surgery for endometriosis at the age of 30, I had a long weekend to recover.  Thursday was the surgery, and I was back to work on Monday.  Frankly, I wasn’t ready to return to work, but I mastered the art of pushing myself even when I was sick.

For the second surgery at 39, I took a week – maybe a week and a day.  Like the first surgery, I was still stage 2 endometriosis.

This surgery at the age of 43 – We are going on one week and two days.  I’m not 30 anymore, and based on the report of many adhesions, I’m probably beyond stage 2 endometriosis (the stage diagnosed during the first two surgeries).

Thankfully, my wonderful ecumenical colleagues in ministry were able to lead the service tonight without my presence.  This came in the form of a group email giving me grace and the permission to rest.

Ash Wednesday in pain.  And so I thought to myself out loud in a Tweet:

Feeling weakness & pain as I recover from surgery are all the ashes I need to remind me of fragility & mortality. #AshWednesday

— Michelle Torigian (@mictori) March 1, 2017

My pain and my inability to live fully on Ash Wednesday were more symbolic than any ash could give me.  I’m limited.  I’m mortal.  I’m fragile.  I can’t keep going the way I normally do right now because my human body is healing.  I need help.  God knows this.  Other humans know this.

Why can’t I accept this?

Sigh.

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Waiting to Heal

16 Thursday Feb 2017

Posted by mictori in Life, Pop

≈ 3 Comments

Tags

chronic illness, chronic pain, Endometriosis, Endosisters, Healing, Hillary Rodham Clinton, laparoscopy, Lena Dunham, pain, Surgery, Susan Sarandon, Whoopi Goldberg

teddy-teddy-bear-association-ill-42230The endometriosis has returned.  At least it’s what I think right now.

Next week, I have my third surgery for this disease.  Now, most of the time I’m fine.  And I’m the type of person who works diligently through my pain a it doesn’t stop me from being a productive person.  But eventually I get to the point that I need to have a procedure as the pain reaches a distracting level.

Have I mentioned how much I hate pain – how I would rather endure surgery than experience daily agony?

I’ve written about my experiences with this illness here, here and here.  Of course, I’m always doing what I can do educate others about the illness.  It is believed that ten percent of people with female reproductive parts have endometriosis – and this includes some transgender men.  Many women are told that pain with periods is normal, so women will go years before they are diagnosed.  People like Lena Dunham, Susan Sarandon, and Whoopi Goldberg have had the disease.  It is also believed Hillary Rodham Clinton and Marilyn Monroe suffered with it as well.  While doctors try various pills and medications to treat the illness, it often feels like there are few good treatments besides surgery.  The other treatments I’ve tried were spoiled by the side effects.

While most of my energy is dedicated to work and healing, little time has gone to writing. Which is why I’m giving what I can tonight to my craft and calling as a writer.  In the next few days I hope to write more here about my experiences with endometriosis in the pulpit and as a woman.

I’m very fortunate that I’ve gone years between each of my surgeries – unlike many women.  My hope is that in a few weeks I will be back to my normal self – blooming with energy and gaining momentum to become active again.  This is what happened after the first two surgeries, and I pray that it will happen this third time.  All I want is to feel human once again, to savor the joys of life with friends and find myself outside under the sun instead of on the couch and in bed during free time.

Netflix is nice, but there is so much streaming one wants to experience because there is an entire world to see, hear, and taste.

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March Forth… Along with a Million Other Women

04 Tuesday Mar 2014

Posted by mictori in Life, Pop, Pop Culture, Religion

≈ 2 Comments

Tags

advocacy, birth control pills, Endometriosis, Endosisters, laparoscopy, lupron, March Forth, progressive Christianity, United Church of Christ

march forthToday, March 4th, the United Church of Christ and other denominations ask us to take a stand and march forth in body, mind or soul in an effort to bring justice to our world.

I march for Endometriosis.

Now, some may think this isn’t much of a justice issue.  To many, it’s another health issue to which only half of the population is susceptible.

Isn’t it just another painful period?  Aren’t periods supposed to be painful?

No.

Wait, didn’t God say that this is a punishment for Eve eating the forbidden fruit?

No.

Endometriosis is an illness when the lining that is usually found in the inside the uterus migrates  outside of the womb.  It can be found on the outside surface of the uterus, the Fallopian tubes and the ovaries not to mention the bladder, bowels and a variety of other organs.  The tissue has been found on the brain and in the lungs.

There is so much mystery surrounding Endometriosis.  They’re not sure if it’s genetic or if tissue is regurgitated into the abdominal cavity.  There is nothing we can do to prevent the disease from starting.

So besides not knowing how it begins, there is no know cure.  Doctors will prescribe birth control pills to control the growth.  If the pain continues, a laparoscopy is performed.  This is the only way Endometriosis is truly confirmed in a woman.  While they are performing the minimally invasive surgery, they will remove much of the tissue growing outside of the uterus.  Often, this will alleviate the pain, but for many of us, the growth begins again, and the pain intensifies.  Doctors will also prescribe Lupron, a drug that will place a woman into menopause for a few months.  The hope is that the Endometriosis is greatly reduced when the periods return.

Hormones have many side affects and no one really wants to have surgery.  I can tell you that it’s difficult to choose between the two.  Yet knowing how hormones wreak havoc on my body, I tend to choose surgery when the pain is consistently intolerable.

I’ve had two laparoscopic surgeries: one in 2003 (when I was diagnosed) and one in 2013.  I feel fortunate that I went over nine years without another surgery.  I seriously doubt that nine years will go by before my next one.

It’s incredible to see this great fight over the coverage of birth control when people with Endometriosis find it as a temporary solution.  Unfortunately, birth control is a “sinful” substance to many, but for a multitude of others, it returns their lives.  It should be widely available for women to use for a number of reasons.

There is one other thing: not all doctors are willing to face Endometriosis.  I’ve had a couple of wonderful physicians who were willing to take my condition seriously.  But women are told that extremely painful periods are normal.  By gynecologists.  And then they are told pregnancy and hysterectomies will cure the disease.  Yet nothing is curative.

So it’s time to stand up, to march and to let women know that painful periods aren’t what we as women should be experiencing.  It’s time to be like the woman with the hemorrhage in Mark 5 and advocate for ourselves.  We’re not willing to have these pains decade after decade when it could have been diagnosed in our teens or early 20’s.  We’re not willing to stand by as this disease takes over our bodies and robs us of our lives.  We’re not willing to let this tissue grow like weeds so that we experience defeating infertility.  It’s time to use everything we can and let our health care providers know when our body isn’t right.

And it’s time for us to stand up to our legislators and let them know to allocate more money in funding for research.

As we march forth today – most of us virtually – let us support one another in our common pain.  Let us support those we love whose pain overcomes their lives.  And let us stand up to the powers that be who can make fiscal decisions, making this disease a thing of the past.

I plan on sending a to my senators and congressional leaders.  Others will be marching in Washington D.C. and other cities all over the world on March 13.  What will you do?

Find contact information for elected officials in the United States HERE.  For more information on the Million Women March for Endometriosis, check out the website: http://www.millionwomenmarch2014.org/.

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Surgery beyond television dramas

15 Tuesday Jan 2013

Posted by mictori in Life, Television

≈ 3 Comments

Tags

Church, Clergy, Endometriosis, Endosisters, God, Grey's Anatomy, Healing, Jesus, Prayer, Surgery

I’ve watched every episode of Grey’s Anatomy multiple times.  And many episodes of ER.  And a few episodes of St. Elsewhere.  I love medicine, and visiting hospitals absolutely does not gross me out.

That being said, facing surgery tomorrow is freaking me out.

I have endometriosis, a condition of migrating tissue.  Through laparoscopic surgery, I am able to get some relief from the pain and discomforts of my condition.

I had this surgery in December 2003.  With the exception of a little reaction to the anesthesia, I recovered fairly well and the results of the surgery delayed further growth.  I am fortunate that I’ve gone nine years without another surgery.

However, during the past six months, I’ve experienced horrific pain and other abdominal health issues.  My fatigue has been worse.  My life has been limited by my condition, and I want to live fully again.

So often, I visit people in hospitals immediately before their surgeries and in the days following.  As I’ve had to go under the knife, I remember the fear that people face when they, too, must have surgery.

Now it’ s my turn.

I don’t believe God is making me endure this surgery – – either because I’ve done something bad or because I need to learn a lesson somehow.  Instead, God goes with me into the surgery.  God sits with me as I freak out on my couch tonight.  God stands next to the operating table, stands with the doctors and nurses, gives wisdom to the anesthesiologist and gives peace to my parents in the waiting room.  God is in all of these places bringing strength and peace.

So I value your prayers, my friends.  If you are not a praying person, I value any thoughts, energy and love you send my way.  To me, all of these things sends a peaceful and healing energy into my life.  I am blessed to know that the people in my church, my clergy friends from around the country and my endosisters (women with endometriosis) all over the world are thinking about me.  Because of this energy and God’s constant presence, I know that I’m not alone.

Loving God,
Thank you for your gift of medicine,
Your doctors and nurses,
For family and friends who care.
Guide the hands of medical professionals,
Bring wisdom to their minds.

I pray for all others having surgery tomorrow and this month.
I pray for all caregivers,
And I pray for those who struggle with the same medical condition I have.
In the healing name of Jesus the Christ I pray, Amen.

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