Endometriosis

You are currently browsing articles tagged Endometriosis.

Happy Friday, dear readers!  Hope you had a lovely week.  Mine was up, down, and sideways, but mostly down, to be honest.  Even though I stopped taking the post-surgical hormones two months ago, I still feel funny, not to mention heavy.  I gained fifteen pounds and have not been able to shake it, despite my pretty rigorous routine.  A serious bummer but all part of my endometriosis education.  It goes a bit like this:

1. Suffer serious pain

2. Suffer mental anguish at the fact that the pain is disregarded by a couple doctors (NOT Petra Caruso – she’s the tops), and, despite myriad efforts over ten years, does not lessen.

3.  Deliver shock and awe over the severity and complexity of my case to a specialist dealing in these problems for more than thirty years.

4. Have fallopian tubes, the right ovary, uterus, and innumerable adhesions removed in a 6 1/2 hour surgery that was only meant to be two.

5. Lose so much blood in the process that standing for more than a minute on my own will be an event weeks in the making.

6. Take massive doses of progesterone to keep the endometriosis at bay while suffering through eighteen unpleasant side effects, including uber moodiness, headaches, sleeplessness, and the aforementioned weight gain.

7. Realize, holy smokes, this suff is hard, and depressing, and crappy, a real emotional roller coaster, and it isn’t over yet.  I’m really ready for it to be, really, really.

On top of this, one of my great pleasures, as you well know, is going to the movies.  Unfortunately there’s been a serious dearth of good films to see at the theaters I frequent.  I can’t even remember the last time I was at the Academy.  So, with all this in mind, imagine my delight, more like giddiness, when I saw that the Hollywood Theater had not one, but THREE movies this little lover of cinema was pining to see.  I went into paroxysms of glee people.  Glee!  I would have my friend Bridget attest to this fact, for she was on the other end of the phone at the moment of my great discovery, but she is a little shy of the blog, so you will just have to take my word for it.  I’m as honest as Abe.

One more bit before the movie, and yes, I do know I’ve gone on.  The hubster was going out of town for a couple of days on business (to Napa! Fine food, wine, and learning), so we decided to make a little date night of it.  We tried the new Foster Burger and enjoyed it quite a bit.  I had a ginormous wedge salad with fresh herbs, apples, blue cheese crumbles, and a crazy piece of pork belly fried in duck fat, light as air and oh my, my, ooh la, la!  The hubster had the expected burger, fries, and a chocolate milk shake, which he shared (I shared too).  All was good – the food, convivial service, and music on the hi-fi.  We’ll be back, definitely.

Of course, the movie was the icing on top.  It follows Jenny (a girl who reminds me an awful lot of myself at that age), a sweet, smart, and occasionally sassy girl on the verge of turning seventeen.  She’s a Francophile with a serious love for music, art, literature, and cigarettes.  Though she has someone who is sweet on her, she finds him boring, and is swept off her feet by a man who is probably twice her age.  He possesses everything she desires: culture, intelligence, good looks, and an impressive car to boot (a gorgeous Bristol 405, gulp), as well as some other dubious characteristics she is willing to overlook.  He delights her, spoils her, and takes her places no one else can.  All with her parents permission, I might add, for they are just as smitten as she.  As their romance progresses, Jenny questions the worthiness of an education over spending her life married to someone so worldly, raising some pretty interesting questions in the process.  Very well done.

Tags: ,

Hello all.  I hope you’re having a good day.  This chum is feeling a little glum, can’t really say why either.  I felt pretty and inspired by this outfit and took a photo that I like;  I’ve been dancing up a storm with Yoga Trance Dance and Nia; and the weather’s been mighty fine too, a nice combination of sun and rain (rainbows, too), good for walking and raking and being inside for my Monday top-to-bottom housecleaning and laundry extravaganza, followed by my 4:00 appointment on the sofa, switching between The Newshour and Oprah at the Texas State Fair.  Darn it all, if this weren’t the week the hubster and I are eating vegan, as well as wheat, sugar, and alcohol-free, I’d be chowing on a corn dog and frying up some PBJ sammies with a whiskey chaser.  Mmm-hmm.

As the hubster would say, “Some days are diamonds, some are cubic zirconias.”  I seem to be making a cubic zirconia bracelet.  Maybe it’s the hormones.  I’d like to blame everything on them.  I’m still taking a high dose and have every side effect listed on the warnings: zits, headaches, dizziness, sleeplessness, drowsiness (don’t ask me how both are possible – it’s scientific!), weight gain, moodiness, and confusion.  I’ve been getting lost in the middle of a sentence.  I also have occasional night sweats, too.  I wake up soaked through, but not hot or cold.  Weird.

The upside: now that the I have recovered from my surgery, I am in hog heaven.  I can’t remember the last time I went this long without being in dire pain in the lower regions, probably twenty-five years.  This is good news and reason to smile.  I’m smiling, at least.

In other news, I had an awesome bird sighting in our back yard.  I was going downstairs and as I walked past the window I saw something bigger than my usual bird friends on the move.  I stopped and realized it was a hawk,  just a bit larger than a crow, with a red breast and a beautiful striped tail.  With the help of my friend at the bird shop, we determined it was a young Cooper’s Hawk (aptly named – we’re big Cooper fans around here).  I wanted to take a photo of it, but the batteries in the camera were dead at the time.  Thankfully, I had the good sense to stop and just enjoy the moment rather than run around like a nut and miss this special visitor.

Finally, some ethereal visitors, growing in the side yard with the kinnikinnick.  We got up early on Saturday and raked leaves in the brisk morning air.  These were glowing magically in the light.  Pretty neat, huh?  Gosh, with all of this in mind, maybe it’s a diamond day after all.  I think I’ll take a bath and think about it!

Tags:

My friend Kelli asked me this question recently.  I thought, in my very blogger way, I’d answer it publicly.  First off, let’s get physical, tee hee.  I feel like a broken record saying this, but, here goes, I’m t-i-r-e-d.  With the heavy blood loss sustained during my surgery, I am struggling to keep up, energy and oxygen-wise.  To put it into perspective, when I was a blood donor at Children’s Hospital in Denver, I was eligible to give one pint of blood every fifty-six days, the length of time to fully replenish it in my body.  I lost three times as much during my surgery, so I think I have quite a while before I’m not tuckered out performing normal activities.

Thankfully, my incisions are feeling better by the day (though still very Frankenstein-ish), and the only times I experience serious discomfort are when I sneeze, a cat jumps on my tummy, or I jump or jog, even a little bit (like power walking/dashing down the street to get to my dentist appointment on time).  So, I still have a bit more time before I can exercise like I used to.

Now for the emotional.   I am pissed!  I am pissed that I can’t do what I want when I want.  That window needs to be opened or cleaned or whatever, but I can’t do it.  Same goes for the laundry, mowing the lawn, sweeping (I made a mistake by doing this too early), and vacuuming.  I hate dust bunnies!

I am grateful.  I am grateful for my good health, all considering, before the surgery.  Had I been out of shape and overweight, my very complicated surgery would have been made much more so, as fat in the belly makes it even harder for surgeons to do their work in a safe and precise manner.  Also since I was in shape before, I am not suffering nearly as much as I would have to recover.  Oh goodness, I can’t imagine it being worse than it already has been.  Seriously people, it’s been HARD.  I am also grateful for all of the wonderfully kind and supportive people on my block, across the country, and here in blogland.  I don’t think I have ever written so many thank-you notes or shed so many tears of wonder at how tenderhearted and caring people truly are.  You are amazing!

I am irritated!  I am irritated that people have criticized me for having my uterus, fallopian tubes, and right ovary removed at such a young age, even though they were utterly deformed, absolutely useless, and a source of tremendous pain.  I shall never make an apology for this.  I am in charge of my body.  I am irritated that I have gross pimples, headaches, and sleepless nights from taking all these hormones.  I am irritated that I can’t go to Nia class, lift weights, or spend a morning practicing yoga.

I am in awe.  I am in awe of my dear, sweet, funny, and talented doctor.  When faced with the mess that was my insides, she did her best to fix me laparoscopically.  When the blood loss was too great and my life was at stake, she completed the surgery in the safest manner possible and rid my body, for the most part, of the source of the excruciating pain I’ve endured for years.  I am in awe of my superstar husband.  He has been so tender, patient, loving, funny, and kind through what has been a VERY difficult time for us both.  Bless his gigantic heart, I love him so.

I am ready.  I am ready to start anew, to experience a life without so many limits, in boundless joy.

That’s it.  Really.  How are you?

p.s. The dog pictured above is not ours but a friendly guy we met in the forest.  He had no collar (fear not, his owners were nearby), so I named him Angus.  Good boy!

Tags:

Have you ever been at a Chinese restaurant and played the game where you add the words “in bed” at the end of every fortune?  For instance:  Something good come your way…in bed.  It is a silly way to get a laugh, made better by the often poor English translations.  I ask this because I feel like my life has been turned into a bizarre version of this game.  The photo shows just a few of the activities I’ve engaged in (in bed) since coming home: sleeping (lots and lots), painting, reading, and writing.  I’ve also listened to music (Radiohead at the moment), given myself a manicure, eaten (oh the crumbs!), watched A LOT of television, movies, and lucky for me, entertained visitors.

Despite enjoying some of the Queen-like aspects of such an existence, I must admit that it’s been rather hard on me, and, sometimes, the dear hubster.  I am a homemaker by trade.  I think this is the first time I’ve admitted it so honestly.  Though I love to write, this is my bread and butter.  I receive great pleasure from keeping house: gardening, cooking, cleaning, sweeping.  To say it has not been easy to hand over all of these duties is putting it mildly.  At first it sounds good, and really is, because there’s no way anyone should engage in such activities after a surgery like mine, but then the reality of not being able to do it sets in, and it gets depressing.  I have shed quite a few tears over not being able to make the bed, water the garden, or do the laundry entirely on my own.  I have also been a little wicked and expressed my distaste at how the hubster doesn’t do things like me.  Bless his GIGANTIC heart, he has taken it all in stride and forgiven me my cruelty.  Oh, do I love him so.

However, I have a BUT for you, dear readers!  This morning, I actually had enough strength to water the garden, sweep the main floor, tidy up the TV room (which is upstairs!), and clean the kitchen.  Though it took twice as long as it normally would, and I did much of the cleaning while sitting down, I did it!  Progress!

Here’s a bit more, too.  This is a photo Gregory took of me on Friday (on his Blackberry – we haven’t graduated to taking the camera everywhere).  I am wearing the Office Tiara (maybe I am a queen – tee hee!) while waiting for my specialist and my first post-operative check-up.  She removed the remainder of my steri-strips (ouch!) from the incisions and was pleased as punch at the rate of healing (I still feel a bit like Frankenstein – more emotional work to do there).  I was given the all-clear for another two weeks, as well as a new hormone prescription that we hope will, as Liz said, “Keep the endometriosis on the run.”

Speaking of being on the run, I still can’t drive (lack of mobility + narcotics consumption= bad idea), but haven’t really wanted to anyway – there’s no place like home.  I’ve walked to the neighbor’s house with the help of my cane (watch out Kramer), and that seems plenty far to me.   Same goes for this post.  It’s been a busy day.  I think it’s time for a nap!

Tags:

Hello my friends!

Gosh, it feels so good to be back in blogland!  Now if I could just be in the land of the fully mobile and conscious, that would be grand.  I am not complaining, however.  I feel better with each passing day, requiring smaller doses of narcotics to keep the pain down, while gaining more strength and mobility.  When I first got home, I was popping pills like crazy and had to use my walker (remember that?) every time I wanted to go anywhere, though my trips were mostly limited between our bed and the bathroom.  Going all the way to the kitchen was considered a big feat!

Now, I only need the walker about half of the time,  moving  quite freely on the first floor of the house.  I don’t know when I will muster up the strength to go upstairs, but, thanks to my superstar hubster and guest blogger, I have practically everything I need in our bedroom: a borrowed air conditioner for this hellish weather (107 today, ugh), a boom box, television, lap top, watercolors, books, and snacks!   It’s pretty darn cool, pun intended.

Endometriosis

Since a lot of people have asked questions about the endometriosis that led me to my surgery and this cozy bedroom lair, I thought I’d give a little information about it, and why it was causing so much trouble for me.  In a nutshell, endometriosis is when tissue from inside the uterus migrates elsewhere in the pelvic cavity (no one knows why, when, or how).  It is problematic because it has hormones and a monthly period just like the uterus, only it can’t exit the body like a normal period does, so it stays inside a woman’s abdomen, where it creates adhesions, like scar tissue.  Think about it like this – you spill something on the counter without cleaning it up right away.  When you return in a few hours, you touch the spot and your hand sticks to it, and sometimes even creates a kind of gooey, taffy-like bond.  Only with endometriosis, you can’t wash it off.  The taffy just spreads, connecting tissue and organs that have no business being such close neighbors, and, at least in my case, causing some pretty intense pain.

This is why my surgery could not be completed laparoscopically, and I had to be opened up.  My insides were so thoroughly bound and twisted with taffy-like adhesions that my doctor needed to get inside and carefully cut everything apart.  Thankfully, she was able to do so.  In the process, she removed my uterus (complete with a large adenomyoma), my fist-sized right ovary, both fallopian tubes, as many adhesions as she could, and then zapped the remaining visible endometriosis with a really good laser.  It’s no wonder it took over six hours!

Waves

Being in the hospital was a very emotional experience for me, like I was out at sea and riding a series of waves to shore, to home, and with each wave came a different emotion: gratitude, release, sadness, disbelief, joy, and wonder.  Gratitude –  I survived my surgery.  I was alive, and the healing process was underway.  Release – I am a pretty independent person, but in this situation, I had to, quite literally, hand my body over to strangers.  They fed me, clothed me, bathed me, all with great kindness, compassion, and respect.  Sadness – Even though I had never wanted children, I felt sad that this definitively left that choice out of my hands, though I guess it never really was.   I am not driving this bus!  Disbelief – For my recovery, I was placed in the Family Birthing Center, as the staff there would best know how to treat someone in my condition.  Perhaps this seems a logical choice for someone who has already had children, but for me, it seemed a bit, well, odd.  The lady who can never have children, infertile Myrtle, chockablock with mothers and babies?  This same feeling of disbelief, however, was replaced by Joy – To be in the most precious place in a hospital, to witness those first days of life, the first tiny cries, each beautiful babe swaddled, hatted, and loved by all.  Finally Wonder – There is so much kindness in the world, so many talented people doing their best work, so much love, and I am a living, breathing part of it all.

Thank You

Now it is time for some shout-outs.  First and foremost, to my amazing husband.  Through our eighteen years of  my increasing pain and suffering, he has always been a source of great love and support.  I could not imagine a better partner or friend, no siree Bob.  During my hospital stay, it was the hours he was there that I felt most safe.  Listening to him type away on his laptop or hearing his whispers in the dark, it was almost as if I were home and not hooked to a catheter, pulse oximeter, and an IV.  I was free.

My fantastic doctors.  First, to Petra Caruso, Naturopathic MD.  One of the most kind and compassionate health care professionals I have ever had the privilege to meet, she has been on this journey with me for nearly two years, constantly striving to find new, healthy solutions to make my life more comfortable.  When she realized our options had been exhausted, she recommended my awesome specialist, Dr. Liz Newhall.  Oh goodness, I am ever so pleased to have found her way while on my own.  She is an amazingly talented woman, highly educated in her craft of women’s health, with a heart and humor to match.  After my surgery, when I asked her how bad it was, and she told me that it was one of the worst cases she’d seen in her thirty years of practice, she said, “You would have won a blue ribbon at the fair, no doubt about it.”

YOU, the people of cyberspace, across the street, across town, across the world.  Thank you so much for your prayers, kind thoughts, cards, meals, visits, everything.  I felt and continue to feel so bouyed by all the love being sent my way, so incredibly grateful to be alive!

Tags:

« Older entries § Newer entries »