Strong Inside. . . & Beautiful?!, Part One

A few years ago a very dear friend was sending me a text message, and my name 'Stephanie' kept coming up at Strong Inside which at the time i was dealing with my dad's demise and ultimate, somewhat unexpected death was just what I needed to hear. It was amazing and I think back on that message that ultimately I believe came from my dad. Lately with the recovery process I've been in I've felt I needed to draw more upon my inner strength which sometimes I doubt I even have.

One of the biggest aspects of my femininity that has been taken from me for far too long is beauty, both looking it but most importantly FEELING it. Kinda funny that my oopherectomy, which removed my final female reproductive organs has made me feel safer, more proud and almost ecstatic to explore, discover and play with my femininity, most specifically speaking: beauty.  The two contributing factors of my life that have led me to this place are endometriosis and sexual abuse.  I've decided to break it into two blogs, so tonight, in part one we will discuss endometriosis and the following blog will deal with the sexual abuse aspect of impacting beauty, femininity, etc.

A few years ago my friend and I discovered an amazing hiking trail up in the mountain so Ojai. (We used to hike on a weekly basis and once my health is back in order I hope to again). We found the most amazing trail that led to a 300foot waterfall! It was so incredible. We also, more incredibly, ran into a couple that taught us how to crawl up into and under the waterfall. We could feel the water rushing over and while taking pictures with the flash of our phone cameras we realized the caves looked JUST like ENDOMETRIOSIS. I had some very special and sacred meditations and realizations in those caves and I treasure those moments and memories. However special theses times, because of how severe my disease was at the time I felt almost at my ugliest. 

I find these caves amazing and once I'm fully healed I cannot wait to go back to these caves. I feel like I will need to do some type of special sage smudging, probably among other things there to just signify my separating myself from that part of my life, another sign that my true life might be getting ready to begin! Exciting (and kind of scary) thought.

This concept of beauty and femininity is yet another aspect of my life that endometriosis has taken from me.  When the endometriosis began (nearly 19 years ago) which is when I was 13 years old caused me to have even less respect for my body and femininity.  How did endometriosis impact my desire to look pretty or girly, you ask?  Well, actually in several ways. Most simply endometriosis takes an indescribable amount of energy with the severe pain, numerous medications, night after night of restless painsomnia, countless emotions which can be absolutely exhausting. With this exhaustion, I've not had the energy to spare on accentuating my femininity.  Endometriosis resulted in so many emotions, such as: sadness, confusion, worry, frustration, hopeless, scared, angry, etc.  Sometimes that anger had been turned inward on myself, anger towards myself for simply woman.  For yet again if I weren't a woman I wouldn't be suffering in this very painful, overwhelming way.  Further with the symptoms of somewhat frequent abdominal bloating, dark as coal under eye circles from frequently getting little to no sleep I felt it useless to even attempt to look any better than I did because I was beyond help so to speak. So celebrating or reveling in my being a woman with cosmetics or putting effort into my appearance has not my priority. 

I had experienced incredibly painful, if not excruciating, experiences connected to my being a woman. In regards to both the sexual abuse and the endometriosis, I blamed myself and my body. With that mindset the last thing I wanted to do was that was to enjoy, celebrate or emphasize my femininity. I simply didn't deserve to feel good, especially since I was to blame in the first place for the above issues. 

These bloat pictures in particular touch me because the one on the right was while I was getting ready for work, andthe other is when I got home: the difference of 3 hours!

DRUM ROLL PLEASE......................

Well today I am just a few days over a month from having  an oopherectomy and excision of endometriosis and adhesions. It has been one hell of a process I'll tell ya that. Sometimes I feel pretty darn good, lately I've been having some pain and other issues which hopefully will be rectified soon. 

After my surgery and Katie (for those of you that do not know the bloat I severe bloat I experienced I named Katie) moving out I had a photoshoot done with the daughter of a great friend of mine, I wanted to reconnect with, or maybe connect with for the first time, my femininity. I wanted to share some of the photos that were taken. I love them all so much which is something I never would have been able to say before so that must be some type of progress.

For nearly my whole life being a woman has resulted in indescribable pain; however following this most recent endometriosis surgery, these feelings of negativity I have held toward my own body and my femininity have begun to dissipate.  Not only that, those feelings have changed into feelings of almost freedom, a desire to explore my femininity, and expressions of it, and this really excites me. That is why the photoshoot was so significant to me, especially at this time.

My photographer was absolutely amazing and truly made me feel so very comfortable as I was incredibly nervous. I would highly recommend her and I look forward to working with her on my next project, whatever that may be ;)

 Then I have some photos of my own where I feel beautiful. It is a process to even be able to say that. It is exciting to wear dresses and not feel like I need to select clothes on what while hide things the best. I mean one day I went out and I cannot tell you how many compliments I had on my "outfit" and "style" which is something I've never been able to focus or put any energy towards before so it is truly a whole new world!

And another really exciting announcement:

I have started a video blog on YouTube, I even began a channel, called Brave Healing. It is meant to be an extension of my written blog. I thought I would not enjoy it and wasn't sure I could do it, but I DID and I LOVE IT. Below is my first video, my introduction to my disease and I will include the link to my channel which can be accessed by clicking here.

Thank you for taking the time to read my blog and to even now watch my video blog! I am SO dedicated to AWARENESS AWARENESS AWARENESS and to helping fellow endosisters truly know they are not alone and also to help others who do not have this disease to understand how this disease impacts our lives; I have yet to find an area that is NOT impacted by this disease!

WE NEED A CURE!!!!!

These final pictures are from the most recent Endo March up in Palo Alto I attended, I just love raising awareness.

I would like to end this post with an important meditation from Inner Wisdom: Meditations for the Heart and Soul by Louise Hay.

I heal myself on all levels

This is a time of compassion and a time if healing.  I go within and connect with that part of myself that knows how to heal.  It is possible.  I know that I am in the process of healing.  During this time,  I discover my healing abilities- abilities that are strong and powerful.  I am incredibly capable.  I am willing to go to a new level to truly heal myself on all possible levels.  I am spirit,  and being spirit,  I am free to help myself- and the world.

Photo Collective: SO what does endometriosis LOOK like?

***DISCLAIMERS***
First, I'm on a lot of heavy duty meds tonight, I will re-proof in the morning but tonight this could really say anything lol. Second there are some surgical pictures here, both internal surgical camera pictures and scars so if that bothers you, don't look.

I've written a lot of super personal, somewhat heavy blogposts lately about the emotional components and frustrations that accompany endometriosis.  Tonight I'm going to mix it up with a photo collective of various pictures and images that will describe what ENDOMETRIOSIS in a way that I feel words will never be able.

I wanted to be both actual in my pictures, that are pictures of MY endometriosis belly, some surgery pictures, and some images that express what the feelings are that accompany the physical manifestations of this truly all encompassing disease.

I figure it makes sense to start with my very first picture of my dreaded endometriosis bloat, which is named Katie, for those of you who do not already know.

This is the very first picture of Katie that I ever took!

That is a heating pad and a BE band, a brilliant pregnancy/maternity
product from Target that I use to hold my heating pads where I want them to be

Pretty severe bloating I would say!

So on top of the physical symptoms of this dreaded disease
how do you look like this and not become more depressed and upset
and have a constant, visible reminder of the war that is being waged in there 

I also wanted to share some pictures I have from surgeries, these include operative pictures, and then some post-op incision pictures and then some general hospital shots:

These are my excision surgery scars two days post op, the day
before we were given the green light to go home!

Before my consultation with the excision surgeon I decided to use a Sharpie marker the day before and mark specifically where I had pain. It was very useful and the nurse was grateful I had done it. With all the pains we have, it can be hard to remember!

 

And then of course there is all of the fun included in both operative related hospitalizations, as well as ER trips, ambulance trips when being transferred to a better hospital, and then the actual fun hospital things like visiting doggies!!!

One thing in particular I loved at Cedars is the pet visiting program they offer. I wish it was not my last admission they offered it to me. But each day, sometimes more than once these lovely, peaceful, healing animals will hop on your bed, if you would like, which i always love having and they just love on you and you on them. Animal love is truly the best medicine.

Yes, several tattoos, piercings, hospitalizations and I still cannot handle the needles well!

I don't remember which surgery this was either, but getting up and walking after abdominal, even lap surgeries is EXCRUCIATING. Once I'm up I'm good but the act of getting up nearly kills me. My nurse was shocked when we went for my first walk and I wanted to kick up my leg!

and not such a good moment

Must have been pretty drugged here, looking pretty comfy and stoned lol

Lovely hospital bracelet collection

Can't forget the delicious contrast you drink with ER visits for scans and stuff. YUK as a chronically nauseated person it is very difficult to get much less keep that stuff down!

Super sexy pre-op legwear, to avoid blood clots while on the table, I hate these things sooooo much and always beg to take them off. But when they bargain with taking away the morphine pump, I give in lol

MY WORST ENEM: The pelvic/transvag ultrasound machine....ouch

Defintely before pain meds kicked in!

YUK and OUCH

Going in for surgery!

This was after my excision surgery in 2014 and when I met my new bff the morphine pump! 

For some reason during this particular hospitalization I had to have my iv replaced several times, the least fun iv place, well second least fun, to me anyways, is the hand. 

Last year I endured several, six I believe, admissions that each resulted in a few days of being in the hospital and I'm not even sure when this specifically was, but I will never forget the misery I was feeling in this moment. It was the moment you wake up in the middle of the night, after hours of having your last pain meds and when your body wakes up and the pain rages back.

And then the dreaded ambulance ride. I actually had really cool, young EMTs taking me on our nearly hour long transfer drive, so loud music, good laughs and of course the morphine drip helped ;)

And then there are the images I've found online that to me just express the epitome of what endometriosis can feel like, in an almost hybrid type way, both physically and emotionally.  Each of these images truly moves me in a somewhat major way, but believe it or not, lol I'm not feeling very write-y tonight, so its all about the pictures, this next batch here I'm going to leave, intentionally, caption-less

This is the one that always catches a lump in my throat, considering I'm having the rest of my hysterectomy performed in a little over two weeks, this gets me quite teary right now

I am going to end with some HOPE tonight. I know I need an extra dose of it myself right now, desperately so. So I have a special selection of images and some quotes (Again no captions):

“Endometriosis affects women during the prime years of their lives, a time when they should be finishing an education, starting and maintaining a career, building relationships and perhaps have a family. For these women to have their productivity affected, their quality of life compromised and their chances for starting a family reduced, is something society can no longer afford to ignore. It is time we see serious investment in preventing this debilitating condition in the next generation of women”,
- Dr Stephen Kennedy, WERF trustee

Also I found this quote, as a food for thought thing, to throw out there... I think its interesting, and possibly what we must do when we with endo grow sick and tired, of being sick and tired:

The thing women have yet to learn is nobody gives you power. You just take it.
- Roseanne Barr 

These above quotes really help me to realize I can, and am taking an active part in the process of my healthcare decisions and plans...That I truly believe is a VITAL component to health, especially when you add in the factor of having a complex, life-changing medical (oh yea and incurable) condition.

I want to sign off tonight with what I call an ohmism. I'm working on a book about my endometriosis experience. It is very personal but will be publishing it, if it ever gets finished. Anyhow I thought I'd close tonight by sharing this particular message that I definitely needed to see again!  Thank you for taking the time to read and peruse, I hope you learned a little something, or if you're an endosister yourself, I hope you realize YOU ARE NOT ALONE.

Signing off with wishes for y'all, and myself, of a healthy, easy night of sleep and restorative rest!

~namaste