Thursday, November 06, 2014

My Life Affected by Endometriosis

Wading Through Chronic Illness 

My personal experience with endometriosis: the hills and the valleys.

I usually try to stick to an overflow of arts, crafts and home decor stuff here on my little blog - with the occasional sprinkle of light hearted personal stories. Today is a little different so beware if you aren't much of a TMI (too much information) kind of person, click to close your browser tab now and I will not be offended, promise. Because today I'm outing myself as someone who has suffered with an incurable chronic illness for the greater part of adult life. Someone who sought answers for years and years and when I got answers, I didn't like the answers, but was grateful just to know. 

Below you'll find an article that I wrote to myself for myself a few days before having a hysterectomy. To be brutally honest with well, the entirety of internet land, I wrote it while stooped over in my bed, crying, my husband rubbing my back in silence. It was a hard night.

Today, I'm exactly 3 weeks post-op and feeling quite spunky. I have no regrets (so far). My recovery has been manageable. Most importantly, I am hopeful. I am no longer seeking answers and hope never to have to go down that road again. My decision is not for everyone, and as you'll read in my article below, it was not an easy or comforting one, but I'm glad, so glad and thankful that I made it. 

I hope for you, well "HOPE" - that is what I want you to get from reading a glimpse of something that I never planned to share with anyone, but feel that my hesitancy and feeling of societal taboo on this subject, and honestly overall pride, need to be shoveled aside so that I share this bit of my soul for today. 

Don't worry though, tomorrow there will be more craft tutorials and the next day probably even more :-)  Heartfelt TMI is not for every day, promise.

FROM: the thoughtful mind of Shalana a few days pre-op hysterectomy
TO: all those with endo & chronic illnesses (or any valleys in life to contend with)

When there's no "out" and no good decision.

Looking back on the mixed bag of experiences in my life, there's been a lot of high points and deep valleys. Not exactly different than many of your own circumstances I'm sure. When you hit a certain age - different for everyone - you sum it up with a "Well, that's life." Matter of fact statement. It is not only easier on the ego and emotions that way, but also has a common understanding for those in the same club who have experienced much, maybe not the same roller coaster, but certainly the same feelings. There is just an understood sentiment. Everyone gets there at some point - hopefully.

Those deep valley circumstances, in my past experience, many times come with an "out." Whether it ends up being a family member or friend who intervenes, a personal choice that, although hard, allows you to exit the situation or the gracious hand of God that scoops you up from the mess, it seems like at some point the fog breaks and you hopefully get an "out" or a way to move on. Definitely not unscathed. Hopefully wiser and more aware for the next valley because there will always be a next coming.

One thing I love about the aftermath of the "out" is that feeling of relief and renewal - like that exhilarating feeling after a good  physical workout or taking a mega exam and laying the pencil down with a click. Sometimes though, those deep valleys, seemingly have no truly good out. No good solution. No ideal outcome. And no relief and renewal aftermath to look forward to like in overcoming past circumstances.

This unique situation, where there's really no good decision, no definitive "out," can be different for everyone. I can imagine it could involve just about any predicament because, as humans, we are prone to ailments, temptations and failure. To each their own and there are many to choose from here on earth.

My personal predicament involves health issues and has for several years. If you've kept up with my blog, you might have read about my weight struggle and resolutions to change my self-image and habits. There was more to the story though. That story was also about me trying to foster my own "out."

Backstory confession:
I was finally diagnosed with endometriosis in 2006. Prior to that, I had multiple symptoms, along with multiple misdiagnosis by several different doctors. My endo journey since then has included surgeries, chemical medications for resolution and radically changing my lifestyle and habits to improve my overall health. I have read extensive articles, books and other resources on the disease. I have done my very, very best through several roads to create an "out" for this disease for myself.

Only to discover there is no self-imposed "out" for my chronic illness. And, no good decision to move on from it as there is no real cure.

For many years, I wanted an "out" so badly that I ignored the reality of my disease and then treated my disease with problem solving logic. When surgery, medications and doctors couldn't fix it, then I decided to fix me. I have no regrets in that decision, for learning to value myself and appreciate a fascinating, functioning body was good for my health overall but even more so good for my soul. Yet, it was ultimately no "out" for my disease as I had always thought it would be in the recesses of my mind.

No. My most recent surgery revealed that the endometrial tissue had grown with a vengeance. It didn't care that I exercised 5 days a week or ate more fruit. No. Because, for the first time, well ever, I realized my disease was not a circumstance or experience that needed a standard "out." No. It is a part of me. However undesirable, there is no "out" for that.

And now I am faced with no good decision.

Live with the pain (and I mean intense daily pain) and other side effects like fatigue, tremors, swelling, back and joint pain, rashes, etc. Etc. Etc., they grow daily, as it grows daily, waiting 20 or so years until menopause, and treating it with chemicals and whatever else comes along. That's one choice, if it can be called that.


Eradicate it. Not just with the occasional laparoscopy to laser it away (been there, done that, and it comes back). No. I mean cutting away the source. The root. A full hysterectomy. Really think about that please. Fellow women? And men - think about your equivalent. Think. Now think some more please. And some more. Day and night. That is what I have done for ages now.

This is where I sigh a defeated sigh.

This is where people, family members, friends, get happy for you. "Well there you go, your pain will be over, it is what's best, you can get on with your life.........blah, blah, blah, blah, blah, blah." Because that's what it sounds like after a while. And, I say the same thing to myself all the time in my head and out loud. Yes, I look so forward to the pain relief and hopefully myriad of crazy symptoms going away and really do appreciate their joy and concern. On the other side, no, it doesn't feel good or right or even logical to sacrifice all my God-given female parts to do it. And, we are back to...there is no good decision.

This is where I sigh a disgusted sigh.

Yes, it will help "fix" it for many of us with the disease, but do not ever assume it is an "out." Taking almost everything from me that I both physically and mentally associate defining me as a woman is not an ideal solution logically and emotionally. I understand and fully accept the necessity in my individual case, but alas that doesn't change my whole reality.

"But you don't need those parts to live well." True enough. That could be said for a lot of parts though. However, I'd gladly trade my appendix and not shed a tear. This, though, has made me shed rivers. And on the surface, I can't always explain why, nor do I show it very often to anyone.

Perhaps when this is all past, in several months, maybe a year, two or three, I'll think "Geez, wish I had done that sooner!?" As many women in a similar circumstance have told me. I really hope so. I yearn for that. I do however always think they'll be a little sadness in me though that I couldn't find the perfect or any real "out" for this. Or that there wasn't one provided that looked ideal to me.

And I'll still have the disease, hopefully fewer, hopefully no, symptoms, but I'll still have it. Little tissue deposits embedded within me here and there.

What have I learned from a no "out" circumstance with no good decision?

I should probably say "being more compassionate" or "learning to deal with things with more patience." Yes, probably. Or even “learning to share my burden and rely on others more.” Yes, probably….and I have honestly learned all those things and much more.

But mostly I have learned to "Suck it up Buttercup." Honest to goodness that is the exact phrase I say to myself when I'm in crazy bad pain or too tired to think. (Go ahead, laugh a little or a lot, I have come to terms with my ridiculous and awkward nature. I can laugh with you now.)

Why that silly phrase? Because there isn't always going to be an "out" or even an idyllic good decision to be made when you hit a valley. You will have to suck it up, take a deep breath and keep going, keep on going. There may not always be a clear "out" and you may have no control over creating one either. Accept it, but remember where there's a valley, there's a hill so suck it up like you are always on that hill. Remember it is just ahead of you. Don't let the valleys bully you. You are worth more than that - to yourself and to God.

Through all the immense pain, doctor visits, medications, procedures and trying like an obsessed beast to fix it myself.....I have always known I am worth sucking it up for one more day. That's enough. This is not a “get over it” mentality of dismissal I'm recommending but rather a get on with it mentality. I recognize the pain and suffering is very real and often carried in silence, but please keep your eyes on the hills ahead of you!

And for those who don't what endometriosis is, check out this resource at the Mayo Clinic online to understand the disease and symptoms. You can also read an excellent article on endometriosis by Emma Watts here - much of her personal experience I can relate to. Also for those suffering with chronic pain, anxiety or depression because you've had to continually suck it up or don't ever see your "out" coming -  TELL SOMEONE RIGHT NOW, or multiple someones if needed until it is understood, ask for help and keep going, keep going, keep going! 

You. Are. Worth. It.


Disclaimer: Hey, all readers who made it to this point, first of all, thank you! Please remember, I’m not in any way a health professional - just sharing my personal experience and opinions about it all. I can not answer questions or give advice. If you have physical or mental health issues, please seek the help of an appropriate health professional in your area.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.

Related Posts Plugin for WordPress, Blogger...