Confessions

I have to confess something.



I hate this time of year.



The holidays are hard for me.



I don't care for the Halloween costumes, candy, buckets and decorations.



I hide out alone on Trick or Treat night.



I get sick of seeing and hearing "I'm thankful" everywhere.



I even hurt, seeing stores stock up with Christmas trees, twinkly lights, colored papers and toys for every child's wish list.



I hurt going to the mall and seeing the line of squirming children waiting to see Santa.



I dread going to events, get-togethers, and even just family dinners... and putting on a plastic smile, because I'm not really happy.



I wasn't always that way.



I used to love going to the pumpkin patch.

I used to wait anxiously for Trick-or-Treat night.

I used to have so much to be thankful for.

So much that words weren't even enough to describe it.

I used to love setting cookies and letters out for 'Santa' (even when it wasn't for me anymore).

I relished in creating the perfect scene for 'Christmas morning'.

I even loved the post-Christmas mess left in our living room every year.

But now it's all a painful reminder.


I don't have anyone to take Trick-or-Treating.



There's no one to watch playing at the pumpkin patch.



I lost those for whom I was once most thankful.



There's no one to write letters to Santa or pose for photo ops.



No one to appreciate the culmination of my efforts on Christmas morning.



Not much point in really making an effort at all.



When everyone else talks about their kids' costumes, handprint turkeys and mile-long wish lists...



I think about my wish list.



And there's only one thing on it.



I just want to see them again.  It's killing me to miss them growing up.



So I'm sorry, in advance, for my plastic smile.



I'm sorry for the times I'll excuse myself to go cry in the bathroom.



I'm sorry I can't be excited with you when you tell me your holiday plans.



This time of year is just too painful right now.



Maybe someday it won't be.



Maybe.

Surgery... and a plea

Tomorrow I go in for surgery to excise the endometriosis that causes me such extreme pain each month.

This is the same type of surgery that almost killed me two years ago... but the same type that was successful three years before that.

It is a new doctor... a man of God who has helped a dear friend of mine get her life back.

I come to you humbly asking for prayer

...that I will get through this surgery without complications

...that it will give me my life back

...for a smooth and minimally painful recovery.

I also come to you asking for your blessings for some dear friends of mine while I am 'out of commission'.

This is "Annie".

Remember her?  Remember those eyes that reminded me so much of my A when I saw them for the first time this Spring?

Annie is being adopted!

It absolutely thrills me to tell you that God used me and my precious A to help her find her family.

I "met" Amanda shortly after I posted about Annie in May.  She and her husband have committed to adopt her.  It makes me grin just thinking about how it all came about.  A total God story.

Amanda is an amazing and generous person and has launched a fundraiser to help not only her family, but another family bring home their child(ren).  It is a 50/50 wherein you get to vote on which family will receive the other half of the funds.  Amanda and her husband put up the first $100, because they are wonderful, selfless people committed to helping ALL orphans.  Their donation was finally matched yesterday bringing the fundraiser total to $200.  With the donations divided in half, Amanda and her husband would just break even if the fundraiser ended today.

But it doesn't.  There are a little over five days left of this fundraiser.  Still plenty of time to donate for your favorite child or family...

...or just to make your friend Katie smile.

It is my dearest wish that I will come home to a significant bump in the Jones' family's fundraising efforts.  Please check it out here.

Just $5 earns you a vote.  Little more than a bag of potato chips.  Think of the difference it would make if we ALL just chipped in $5.

You can also find their tax-deductible Reece's Rainbow FSP here.

Pretty please?

Time Flies

Sometimes I just can't get over it.

This feels like it was just last week.

It wasn't.  It was years ago.  Those handprints aren't so little anymore.

Those little girls have grown so much.

My baby isn't a baby anymore.

He's probably starting Head Start this year... when it seems like just yesterday his sister was graduating.

She's ten whole years old and going to be in fourth grade this year - I can't believe it.  When I took the above picture, she had just started Kindergarten.  (The date is wrong)

My 'Little A' is older than my M was when this sweet picture was taken.

M started high school last week.

This trip to the zoo was over four years ago.

My babies.  They were so beautiful.

They are so beautiful.

They wouldn't even fit in these car seats anymore.

I love them.

I miss my little boy... my trouble-maker, who will be four years old this year.

I miss my little girl... the one who has seen more than any child should have to... and who finds a reason to smile anyways.

I thank God I still have the privilege of spending time with my big girl... who is turning into such a wonderful young lady.

Time flies.

Kids grow.

Enjoy every minute you have with them.

Endometriosis: Facts You've Probably Never Heard

As my struggles with my endometriosis have worsened over the past few months, I've found myself thinking - if people really knew the facts about endometriosis, would they still treat sufferers with such indifference?  I think not... which is why I'm launching this new awareness campaign:  Things You Didn't Know About Endometriosis.  Today I'm going to list a series of facts about endo that most people who don't have the disease (medical practicioners included) probably don't know.  After that, I'm going to highlight each fact in its own blog post, including personal testimonies from endometriosis sufferers, medical research, case studies, surgical reports, and anything else I can gain access to.  I encourage you to share these posts with your family, friends, and doctors - both endo sufferers and non-sufferers.  Maybe, together, we can increase understanding of this disease in both the general population and the medical community... and maybe, if we can't bring an end to our suffering, we can at least decrease it.

Before I get into the little known facts, I want to give a brief overview of what endometriosis is, for anyone who might not know.  Endometriosis is a chronic disease of the female reproductive system for which there is no cure.  Endometriosis occurs when the endometrial lining (which normally grows inside the uterus to allow a growing embryo to implant, or is shed during a monthly period) actually grows *outside* the uterus.  Endometrial tissue can commonly be found on the uterus, fallopian tubes, ovaries, bladder, and pelvic cavity walls of endometriosis sufferers.  It can also travel to more distant organs.  Occasionally, endometriosis causes cysts - fluid or semi-solid sacs - to form on the ovaries.  This abnormal tissue can cause a variety of issues in the pelvic cavity, as it is actual, solid tissue that is not meant to be there.  Endometriosis can cause severe pelvic pain, abnormal and heavy periods, and infertility, among other things.

Normal uterus vs. Endometriosis

Here's a little something to help put this into perspective.

The definition of Endometriosis, from the National Library of Medicine:  "Endometriosis is a female health disorder that occurs when cells from the lining of the womb (uterus) grow in other areas of the body."

The definition of Cancer, from the National Library of Medicine:  "Cancer is the uncontrolled growth of abnormal cells in the body."

There is certainly one main difference between the two:  Cancer cells are malignant, and will grow uncontrollably until they take over healthy cells.  They grow at an unsually rapid rate, which is what causes this disease to be fatal.  Endometrial cells are not malignant.  They grow at a normal rate, thus the disease does not usually result in death.  But look at the similarities.  Abnormal cells, cells that don't belong where they are found, that can grow anywhere in the body... on healthy organs... encroaching on the space they need to perform their life-sustaining functions.  Malignancy.  That's the difference.  Not so different after all, it seems... especially when you consider the following:

• Endometriosis can grow anywhere in the body.  It is most commonly found on pelvic organs/in the pelvic cavity, but it has also been found in previous surgical scars, on the bladder, ureters and kidneys, on the bowel (intestines, colon, appendix, rectum) and even rarely inside the vagina, inside the bladder, on the skin, in the lungs, on the spine and even in the brain.

Possible sites of endometriosis

• Endometriosis can be fatal!  Endometrial tissue can cause internal hemorrhaging, undetectable by a CT scan, and result in death.  Don't believe me?  Read one sufferer's account here.
• An estimated 10% of women are affected by endometriosis.  That means that, if you think of yourself and nine female friends, chances are that one of you has endometriosis, whether it has been diagnosed or not.
• On that note, endometriosis often goes undiagnosed because women think they are just having painful periods.  Because it can only be confirmed by laporoscopic surgery and biopsy, many women suffer without ever knowing what is causing their pain.
• Though up to 10% of the female population is affected, not everyone suffers from endometriosis to the same degree.  In fact, endometriosis is diagnosed in stages (once again similar to cancer) from I (minimal) to IV (severe) based on the extent, location and depth of the abnormal tissue.
• Contrary to what society and some doctors will tell you, extremely painful periods are not normal!  If your 'cramps' are so severe that they interfere with your life and ability to function normally, something is wrong.  It is not normal to suffer so severely that you can't even get out of bed for several days each month - seek help!
• Endometriomas - ovarian cysts caused by endometriosis which do not usually resolve on their own and require surgery to remove, can range from sizes smaller than a pea to sizes larger than a grapefruit.

• There is no cure.  All treatments for endometriosis are aimed at reducing the pain and impact on other internal organs, and sometimes preserving fertility.  No known treatment effectively cures endometriosis in all patients.  It is a common misconception that pregnancy, menopause, or a hysterectomy will 'cure' endometriosis.  They will not.  Once the endometrial tissue has begun to grow outside the uterus, removing the uterus or the hormones will not always make it 'disappear'.  Many women suffer their entire lives.
• Some of the treatments are brutal.  First line treatment includes hormonal birth control, which can have serious side effects for many.  Second line treatment is surgery.  Other treatments include other hormonal medications with even more serious side effects, which often require other medications to counteract.  For some, the treatment is as bad or worse than the disease.  This starting to sound like any other disease you've heard of?
• In advanced stages, endometriosis tissue and adhesions can actually cause the abdominal organs to fuse together!
• No one is too young to have endometriosis.  Many women begin to experience their symptoms in adolescence (as I did)!  In fact, upon my diagnosis (at age 18), my doctor told me that one of the worst cases he had ever seen was in a fifteen year old girl who had only been menstruating for about two years.
• Endometriosis can cause infertility in 30-40% of sufferers even if the fallopian tubes are not compromised.  The reason for this is still largely unknown, but it is a very real issue for many women who try... and try... and try... and fail... and fail... and fail... to get pregnant.
• Endometriosis goes hand in hand with any number of other conditions.  Pelvic Inflammatory Disease (PID), Irritable Bowel Syndrome (IBS), sexual dysfunction, as well as other digestive, urinary, bleeding and even psychological conditions are often caused or impacted by endometriosis.
• Endometriosis is, in fact, referred to by endo specialists across the country as "the benign cancer", because it acts so similarly to cancer without being malignant.

Saying this is what it feels like is an understatement.

So, dear doctor who felt the need to tell me it was "not necessary to admit endometriosis patients for pain control" in the emergency room tonight, perhaps if you educated yourself a bit on the disease you are supposed to be treating, you might understand that even though it doesn't kill in as huge numbers as cancer, endometriosis can be devastating, your tests can be wrong, and your judgment is harmful.  Next time I see you... I will be armed with information.  And to you friends and family of someone who has endometriosis... remember the quote:  "be kinder and gentler than necessary, for everyone you meet is fighting some kind of battle."  Your friends and family members may not be fighting cancer, but they are fighting a disease, and it is a brutal disease with brutal treatments.  They need you now more than ever.  And to my endo sisters... take a moment just to reflect on this sentence... you are not alone.  Imagine if, when you walked into the ER for the umpteenth time because your pain was out of control, you were surrounded by other women also suffering from endometriosis.  Imagine how supported you would feel.  Well, sisters, we may not always be able to be there for each other in person, but we ARE here for each other, in spirit, in support.  We know how it feels.  You don't have to go it alone.  Reach out to those who understand, and arm yourselves with information for those who don't.

Sources:

1. National Library of Medicine.  Retrieved August 14, 2013, from http://www.google.com

2. Facts About Endometriosis.  Endometriosis.org.  Retrieved August 14, 2013, from http://endometriosis.org/resources/articles/facts-about-endometriosis/

3. About Endometriosis.  Endometriosis.org.  Retrieved August 14, 2013, from http://endometriosis.org/endometriosis/

4. Myths and Misconceptions in Endometriosis.  Endometriosis.org.  Retrieved August 14, 2013, from http://endometriosis.org/resources/articles/myths/

5. Endometriosis:  A Guide for Patients.  American Society for Reproductive Medicine.  Retrieved August 14, 2013, from  http://www.asrm.org/Endometriosis_booklet/

6. Endometriosis In-Depth Report.  New York Times.  Retrieved August 13, 2013, from http://health.nytimes.com/health/guides/disease/endometriosis/print.html

Endometriosis REALLY sucks.

It's official:  I'm having surgery, probably in about two weeks.  This will be my second biggest surgery, and my first with a new doctor.  It will include cauterization and excision of endometriosis, nerve ablation/neurectomy, possible bowel resection and/or ureter repair, and perhaps a gortex device to stop my right ovary from getting stuck off in the middle of nowhere as it is want to do.

Until then, I am in such unbearable pain, constantly, that I have to be on medication nonstop.

I lost my job today because of issues related to my medical condition.  That hurts, I'm not going to lie.

This puts me searching for a job with surgery in just a couple weeks - and who's going to hire me knowing I'll be out for at least a week very soon?

But if I wait until after I recover to get a job, I won't be able to pay a very important bill and it could have dire consequences for my future, for years.  Could even affect my ability to adopt.

How's that for irony... the disease that causes infertility, that causes many people to choose adoption, has become so complicated that it may actually indirectly prevent me from adopting as well.

So I'm having a down day.  If you have any extra prayers, I would really appreciate them.  I need this surgery to get here fast and I need it to work.

In fact, I'm counting down the days.

I really just want to live a normal life.  Everything was going to be okay after this surgery and once again, my life has come crashing down around me.  Sometimes I really have no idea what path God wants me to be traveling down...

Endometriosis sucks.

That's it.  It just does.  There's no other way to put it, it just flat out SUCKS.

Imagine being in pain... ALL THE TIME.

After FIVE surgeries in as many years, intended to reduce the pain.

Pain so great that sometimes, all you can do is curl up into a ball and cry.

Pain so great that sometimes, you *choose* to spend a beautiful evening in the Emergency waiting room rather than outside, because you just can't stand it anymore.

Imagine living all, or almost all of your days, in that pain.

Going to work in that pain... trying to be productive... trying to forget how much it hurts.

Spending time with friends in that pain... unable to fully enjoy yourself because it hurts every.single.minute.

Attending special occasions in that pain... trying to smile and chat when all you can think about is curling up with a heating pad.

Harder still, attending things like baby showers, births, children's parties, mother's day lunches... in that pain.

That pain that constantly reminds you that you may never have the privilege of giving birth.

Praying you can still be glad for others who don't have to struggle in the same way you do.

Praying that the pain doesn't make you bitter.

Imagine thinking you were doing so well, having a good day... and then breaking down crying at the smallest thing, realizing you were really just holding it in all that time.

Imagine heading into another surgery... and looking forward to it, because it just might make the pain better.

Imagine being dependent on doctors and medications - often ones stigmatized by one group or another (birth control, pain medications, anti-depressants)... just to live a semi-normal life.

Imagine not knowing if you'll *ever* feel better...

Or knowing that you may have to have a premature hysterectomy just to gain some relief.

And that in doing so, you open yourself up to a whole host of other possible issues.

Imagine realizing you're lucky in so many ways... this disease is not usually fatal...

But the pain makes it so easy to forget... or not to care.

Imagine that this whole time, it seems like no one understands.

They label you:  Whiner.  Addict.  Downer.  Liar.  And so many more.

Sometimes, they even abandon you.  Your struggles are too much for them.

This is not a disease for which people can easily have sympathy.  There simply isn't enough understanding yet.

Google doesn't even recognize it as a word.

Imagine knowing that THIS... is your life.

There is no escaping it.

That's where I am, right now.  And I'm trying hard to push on, to be okay...

But sometimes, I just need people to understand... that they don't understand.

And that that's okay.

But be patient with me.

I'm fighting a battle you do not know.

Anniversaries

This summer has been full of anniversaries for me.  Not so much joyous ones as painful ones, unfortunately.  I'm doing pretty well staying in the present despite these strong memories, but I also think it's healthy to respect the past and the feelings these anniversaries bring out in me.  For that reason, I'd like to take a moment to reflect on them tonight.

The first anniversary I faced this summer was an old one, a wound that has healed over and instead become a scar - one that has changed me and that I will have with me always, but no longer so fresh.  June 13, 2001, was the day my parents split up.  It always falls within a week or two of another day in June that causes me distress over the things my family has been through in the past 12 years as well.  But in the past few years I've been okay.  This year, that just so happened to also be the anniversary of the day A and I left for the best vacation of our lives.  So yes, I looked back on and felt the depth of how my life changed on that day 12 years ago, but I no longer thought only of how it changed for the worse - I looked at how it shaped me as a person and even changed for the better.  Would I have ever become the person I did and left for that vacation a year ago if it weren't for the events of my adolescence?  Would I have the empathy I do for teens who are going through similar things to what I did?  Probably not... and for that I wouldn't change a thing.

The next set of anniversaries was harder.  June 20 was the day our lives changed forever... the day my sweet A told me the one secret I couldn't keep... the day I set out trying to make things right for her... and ultimately failed.  The following day, the 21st, was the day we flew home and disaster struck.  They didn't believe us.  I couldn't keep my promise... the one I made to A that I would help her.  I couldn't keep it because the system wouldn't let me.  We parted ways in the most painful way possible... we said our goodbyes in sign language through a plate glass window... I... love... you...

June 20, 2012... the day the storm brewed up.

June 21, 2012... the last happy picture before everything changed.

June 27 was the hardest anniversary of all.  That was the day it had been one year since I saw my princess A.  That was the last time I laid eyes on her, our final goodbye.  I remember it like it was yesterday.  She was in the back of her grandpa's truck, no booster seat.  Somehow I bought myself time.  I spoke as quickly as I could.  I told her I loved her, that I had tried to help her, and that I was sorry for the things that were happening to us.  I told her I would miss her and that I would always be here for her.  I asked her if she remembered my phone number.  She said she did.  I told her to remember to tell the truth all the time, and to try not to get in trouble, to make good choices at school and to take care of her little brother.  Then I told her I loved her again.  When they drove away with her, we both waved until we were out of sight.  That was the last time I ever saw the little girl I raised for seven years... the little girl I love like she were my own flesh and blood... who I would give my life for.  Now it's been a year.  The longest I have ever been away from her by far.  Not a day, or even a moment goes by that I don't miss her... that I don't regret what happened a year ago... but I do believe she's coming home, one way or another, and that God will protect her until then.
This year the pain of that anniversary was eased by the joy of a coming birth.  I spent the night at my best friend's house helping her prepare to be induced the following day with her 4th little girl.  After a couple of crazy days with hospital policy, Rylee was born on Sunday, June 30.

Congrats, Shannon & Mike, and thanks for the new memories of snuggling your little ones!

Those days last year set in motion a battle we fought for the better part of a year... one that didn't end the way we hoped it would.  It makes the anniversaries sting all the more that we tried so hard to make things okay, and we just couldn't.  Those painful anniversaries shouldn't exist.  They just shouldn't.  We should be enjoying another summer together... but instead, we're both going it more or less alone.  I live for the day we have a happy anniversary to celebrate... a homecoming.

July holds a different set of anniversaries.  Tomorrow, July 15, will mark two years since my best friend Angie went to Heaven after a five and a half year battle with cancer.  She was only 20 years old.  It was a year ago, almost to the minute, that I last saw her... that we said, not "Goodbye", but "See you later".  We never said goodbye... we even talked about how we never would... because we knew it wouldn't be goodbye, not really.  We knew we'd see each other again in another life.  Instead, the last words I said to her were "I love you."

This may be the only two days of the year that I spend much time thinking about those particular hours two years ago that came at the end of Angie's life.  That's not the person she was and that's not how I like to remember her.  That's not how she would want to be remembered.  I spend most of my time focusing on who she was before that - the funny, silly, compassionate, beautiful, strong and amazing person who was my best friend for so long.  I remember how scared she was of 'losing herself'.  She didn't want a time to come when she didn't feel like herself, because she was so sick.  I thank God that she was able to maintain her sense of self right up until the very last week.  I thank God that when that time came, He brought her home quickly.  I thank God that He gave us time to say that one last "I love you".  And even in those last difficult days... I know she could hear us.  I know she knew we were there.  She became agitated when someone started to cry.  She calmed when we reassured her that we would be okay.  She heard us when we told her it was okay to let go.  Her pain ended two years ago.  In that way, it's a happy anniversary.  But it's a terrible one for the rest of the world, for we lost a beautiful, amazing person... one who I was privileged to call one of my best friends.

Angie and I, goofing off a little over two years ago.

At the end of the month, a day will come that marks one year since the passing of my precious one-year-old kitten, Boo.  A couple weeks later will come the happier anniversary that marks the homecoming of his younger brother, Marbles.  My kitty-babies.  This August will mark one year since a very dark time in my life.  But I'm better already and I'm going nowhere but up.

My Boo, when he was a tiny kitten.

My Marbles... this is about as tiny as he ever was!

As painfully full of anniversaries as this summer has been, I am proud of the way I have handled them.  I am glad for the happy new memories I've made, and for all the ones I'll make in the future.  And I know one day, just like the anniversary of the day my parents split up, the wound that those days have given me will be nothing but a scar - one that has changed me, and one that has made me who I am.