Endometriosis

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All Clear!

I love that there have been so many Atlantic poppies in the garden this year, that the seed heads are as lovely as the flowers, that there will likely be that many more this summer. Summer, who is super early or maybe just delivering the biggest Portland sneak peek I can ever recall. I also love that, while attempting to take this photo with my own hand, the hubster jumped in to offer his own. He’s cool like that.

Now, for my last endometriosis related post for a while. I had my final appointment with my specialist and was, ever so gratefully, given the all clear. No more waiting to exercise more vigorously than a walk. No more hollering for help whenever I need to lift anything heavier than a gallon of milk. No more waiting for a bath! I am a soak in the tub not sing in the shower kind of gal, and seven weeks of lathering while standing was frustrating and depressing. My systems are for lying down on the job: scrubbing, shaving, conditioning, letting the face mask dry. Boy is it good to be back.

But wait, there’s more! I guess I should have warned you first.

I am also going to tell you about my fab specialist, because everyone who does a fine job deserves a shout-out, I think. My former superstar endometriosis doctor left the business a couple of years after my surgery, but I was very lucky to find Dr. Brendan Carroll after learning about the DaVinci Robot (that’s even him using it!) and deciding I wanted someone to use it on me.

And for those who might do a double take at the thought of having a male doctor as a gynecological specialist, let me assure you that Dr. Carroll is the tops! Way better than the highly rated woman who treated me some seven years ago, before I got decent help. When I described my pain to her, how it felt like I was sitting on a railroad spike all the time, she replied, “You just need to learn to relax.” So, I went home, humiliated, thinking that it was in my head, when, as I would discover later, it was real and generated by my uterus being attached via adhesions to my bowel. Food for thought.

And what really sold me on Dr. Carroll was the fact that, when I mentioned my high tolerance for pain, he, in his kind voice, said, “But you don’t have to. We can make you feel better.” Gosh. I don’t have to be in pain. I don’t have to lie stoically on the sofa, not crying or uttering a word while my insides are yanked like taffy.

There is something curious about it, this sitting with pain. For me, it was not suffering, not quite. Yes, it hurt like the dickens. Oh bother, did it ever. But the reason it was not suffering, the reason for my high tolerance for it, that was in my head. Chronic pain cannot be escaped. There is no easy button or emergency hatch. It is there, morning, noon, night; bright, sunny days; through holidays (Christmas!) and vacations (France! New Mexico! New York City!). A permanent resident. So, I realized that I had a choice. I could be that gloomy and sad woman who wouldn’t let a single soul forget she is always in pain, or I could be me: silly, quick to laughter, adventurous, gregarious, slightly mischievous and unpredictable. Me, immensely more fun, hilarious even. I chose me. I like her best. More food for thought.

Sometimes I wonder about that, too, whether if I cried it would have taken so long to get my diagnosis. Someone so kindly and cheerful cannot possibly be in the pain she’s describing. A person must be doubled over and weeping, maybe with a side of histrionics. It’s not like I was asking for drugs, either. Save the ibuprofen I swallowed in massive doses from time to time (usually to little or no result), I was weary of them, what they would do do my already precarious health.

So, thank you Dr. Carroll, for being the kind of doctor who recognizes pain, even if the patient is laughing through it. You do great work!

 

 

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Loss

It is spring, truly, with the whole of Portland dressed in dewy emerald and swaths of effervescent flowers, all happiness and wonder and so very much pink. All is happening under spectacularly swift skies, rolling and roiling with clouds one minute and bright beams of sun the next.

I watch from the window mostly, bound to my bed. The pain is easier now, eleven days post surgery, but it is still wholly present, a dull, quiet insistence. It is bossy, too, and gives directions. I may not move too quickly, nor may I stretch, nor lie on my side with the hubster spooned to my back. Simple pleasure, that, but I must wait for it. I am patient. So we kiss and lace our fingers together and press our limbs in parallel. I smell the sweetness of his beard. I smooth his hair when I cannot sleep.

And I ponder this body of mine. It is not perfect. It does what it pleases, despite my occasional pleading, diligent exercising, and imperfect efforts to eat wisely and healthfully. Gratefully, I no longer blame myself for all that has happened, for all that is wrong, for all that I cannot change. But there are times when I see a pregnant woman, a wee babe in someone’s arms, or, better yet, smell that sweet baby scent, and I crumple a little inside. My body, and her organs of femaleness, could never make this wonder that is life, heart pumping, with fingers and toes and silky soft skin. I didn’t ever want a child or to be a mother but did want to know that I could. To feel that the choice was mine. The loss is acute, but luckily, the pain waxes and wanes.

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Hello! It’s been a while! Thank you so very much for all of your kind words of support and love about my surgery. I am one lucky gal, surrounded by the most marvelous and caring people, including the hubster’s mom, Martha, here for the week to help out. I’ve gotten flowers, a lovely plant, spectacular meals, texts, sweets, and every manner of treat, in person and from afar. Boy howdy, does it make my recovery a little less difficult to be bouyed by so much love! A million thanks!

As for the surgery, it went swimmingly. So much so that I was released from the hospital that day! Compared to my last surgery, this is a piece of cake. I have spent the majority of the last six days incredibly sore and in bed, and for the first couple of days only able to get out with much help from the hubster. Now, I am fully mobile, and as of yesterday, without pain medication, able to get dressed by myself, go up stairs, and leave the house without complications, though not without major fatigue. Errands are hard work, peeps!

And so is blogging! So forgive me for my brevity while I take a s l o w stroll around the block to clear my head.

My care giver extraordinaire, taken while I was in bed, of course. He is truly the best!

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Greetings, peeps! Oh my goodness, if you are a Portlander, do you have the windows open right now, to let that warm breeze in? Hoot and holler! It’s sunny! I have sheets and clothes hanging out on the line. It is a good day, great even.

And then there is the title to this post, which is not so great. Not at all. If you’ve been here a while, you know that I had surgery nearly five years ago to rid myself of the constant and very debilitating pain of endometriosis and the majority of my reproductive hardware it destroyed. If you haven’t, here is a brief recap: in one very long surgery, for which I am grateful to have been under the deep sleep of anesthetics, I lost nearly half my blood, one ovary, my fallopian tubes, uterus, and scores of scar tissue and adhesions caused by years under the wrath of some of the worst endometriosis my specialist had ever seen. If you’d like to read about it, use the sidebar or the tag at the bottom of this post for a fancy search. Much was written! There is also a picture of me looking dorky in farmer hat and nightgown. I have no shame!

But, I digress. I’ve spent the majority of the last five years pretty happily pain-free, which was fucking fantastic, as you can imagine. But it’s come back. Bit by bit, inch by inch, and the pain is constant again. Double drat. I knew it was likely, and my specialist told me that I might have to have surgery again in five to ten years. I would have preferred ten. You can’t always get what you want.

So, next week, I’m going under the knife again to rid my body of the insidious tendrils binding my insides and giving me such exquisite pain. I might lose the last vestige of my internal female-ness, too, that little left ovary that could, which saddens me some. But I am smart enough to know that if it’s hurting more than helping, I will be better off in the long run.

As one would expect, I am hoping for the best. I hope you will, too. If you are willing and open, please say a prayer, send good juju, jump up and down while laughing, pick your pleasure. The hubster and I would be most grateful.

And in the meantime, get out there and enjoy life. It is marvelous and precious, truly!

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I’ve been thinking all morning about the past year, the 365 days since I had my hysterectomy.  So much of what I feel is a jumble, of memories, and emotions, and wonder.  Did all of that pain and suffering really happen, and to me?  Despite the fact that I have four scars to prove it, it is hard to fathom that I ever was different from the woman I am now, one glorious year later.

For right now, all I feel is gratitude and a deep in my bones feeling that all is right, utterly and perfectly so, with the world.  Part of it is the physical progress I’ve made over the past year.  I feel so much better.  I am not in constant pain.  I’m on a very minimal dose of hormones (soon to be none, I think), and I’ve lost the weight I gained on the awful ones.  I no longer need to take iron to cope with the massive surgical blood loss, not to mention the huge deficit every time my period came calling.  I am a healthy woman, inside and out.

Most importantly, I feel an immense sense of gratitude for the ways I took care of myself by letting go.  I let go of the notion that my pain was okay, that it wasn’t interfering with my life.  Sure, I had innumerable ways of coping, of managing, but, looking back, I can’t honestly say that I was truly living.  To be even more honest, I didn’t believe I deserved to experience that other life – the one where I was a good and valuable person, one who didn’t need to suffer.  What a difference a year makes!  Now I know, and in this moment, the only moment that I have, feel truly deserving of a joyous post surgical life.

In this life, I don’t have to fix myself to be a success.  I can ask for the help of doctors, nurses, and the people I love.  In this life, I am not ashamed of what I cannot do and very proud of what I can (Write! Bake! Garden!).  I matter.  I am important. I am worthy of all that is good, great, and spectacular!  So are we all.  Thanks for being part of my journey.

Happy Birthday Buddy!  I love you!

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