Tuesday, May 12, 2015

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

Saturday, May 9, 2015

The Only Thing More Disturbing Than my (used to be) Precious Kitty's Demented Idea of Gift Giving

Any of my readers that have met me or likely read any other posts, probably knows that I love my kitties more than I can describe.  However, tonight my mother and I experienced, YET AGAIN, the most disturbing, and truly the only disturbing, aspect of being a kitty mommy: FELINE GIFT GIVING. Unfortunately this refers to little furry animals, that used to be alive (God Willing) or are some level of dead, that are brought INTO our home by our precious little Wilby. Here is his guilty, yet undeniable cute, mug now:


Doesn't exactly have the killer look in his eyes; but trust me:
I just wiped a piece of tail from his lips.

LOL I'm totally kidding.

I can say with complete assurance that I am right, when I say that the only thing that disturbs me more than my precious kitty bringing me dead animals he's hunted is the bloat tat can be associated with Endometriosis!

This has been an intense, in terms of pain AND bloating, week, but specifically a particularly intense day.  Normally my kitties offer me ton of support when I'm not feeling well.  I will admit that I look at them a bit differently after I've received a gift.  It is disturbing to think my cute, cuddly cats are cold-hearted killers. YUK (super grateful one of my best friends of the past 30 years was only one house away and once I convinced him we DID need his help that he came and got it!)  Unfortunately this morning I had to cancel yet another day of living  and fun I had planned with a friend because of the pain I've been trying to chase unsuccessfully now all day-- actually to be honest for several days.  The strong narcotics I take are not even taking the edge off the pain I'm experiencing.  My surgery is three weeks away from yesterday; fingers crossed that this will be exactly what I need!

All woman are accustomed to some bloating, either due to water weight, super fun hormones and then of course PMS or menstrual-related bloating, but I truly believe the bloating that accompanies endometriosis is on another level of severity!  It is crazy how our bellies can vary even within the period of one day, or like today, in the span of just a few hours.

Here is an example of how I was this afternoon, absolutely NOT bloated at all,
 to extremely bloated a mere 3 hours later!

What an insane difference!
I cannot believe the difference in these pictures this afternoon! So crazy.  The bloating is not necessarily related to the level of pain, I was in just as much pain earlier as I was when the second picture was taken.  I have also been incredibly enormous and not had significant pain.  It is kind of mind-blowing and I have not been given a satisfying explanation of what it is related to or why it happens so intensely in endometriosis.  Here are some crazy enormous bloating pictures!



Bloating like this just makes the already overwhelming pain, nausea, insomnia, etc. incredibly more noticeable.  People approach, and happily so, to touch, congratulate and give well wishes to me, the young and apparently happy looking, pregnant woman.  Since I've been fighting this disease for 18 years and I've undergone surgeries that have made pregnancies or even being related to my own children (effective 3 weeks from yesterday) is no longer possible.  Random people approaching to give me what I assume are genuine well wishes have no idea what they're triggering, but it also isn't exactly socially polite to assume young, abdominally bloated women are pregnant.  In my whole life I have never approached anyone I didn't know and said anything like that ever, much less reached out my hand and touched an unknown, hopefully pregnant stomach.  Even though it has been several years I've been dealing with this dreaded disease and stressful, painful symptom, people approaching me in this way still triggers and upsets me in the same way it did that very first time.  I don't even have a worked out, generic response to give out when this happens.  

Sigh, I guess after a day of flat belly to a few months pregnant has resulted in a strong urge to vent!

I've also decided that I'm going to end each post with an endomtriosis fact, an inspirational quote and possibly a cute Tink the Bengal picture:

This amazing Facebook group called Eno Warriors posts
various factoids about Endometriosis every in March
which is Endometriosis Awareness Month, so I decided
to start off this new closing tradition with one of their most
poignant facts!

A friend posted this to my Facebook a few months ago and
I was deeply touched by this quote;
it is partially why I even blog in the first place!

SUCH a handsome boy! 

Here's to hoping that we endoSisters catch a break tonight and the pain starts to dissolve, we can all get some deeply restorative rest tonight and enjoy a relaxing Sunday before a new week begins!

In peace and love,

Stephanie

Sunday, April 26, 2015

My Best Friend, Tink the Bengal



I'd like to introduce y'all to the most magical,  sentient,  healing,  loving,  dedicated,  amazing, smart,  kind,  compassionate,  helpful,  overall incredible cat, Tink the Bengal. 

Tears are streaming down my face as I write this.  My baby's 11th birthday is this coming June 3rd- I've been his mommy since he was old enough to leave his kitty mommy.  Yesterday at the vet we were informed he has cancer.  I'm still in the information gathering/decision-making stage of what I assume will be nothing but a gut-wrenching process.  


He has been there without hesitation for me during some of the biggest events of my life: my graduating from jr college,  college and graduate school,  my broken leg and subsequent surgeries,  endo and my hysterectomy,  the illness and loss of my grandpa, the illness and loss of my dad. . . Countless other things.  
♡ ♡ ♡

He's my best friend.   When you have a chronic illness, you lose a lot of people in your life.  When you have to cancel plans so many times,  eventually the incited stop coming,  and so do the phone calls.  But Tink has always been there and has just been a source of overwhelming love and support in my life.  I love him more than I knew possible. 

He loves a good chin scratch! 


Here we are at the vet yesterday.  I literally had absolutely no idea that we were looking at something so serious. 





Still feeling overwhelmed and wanted to share some of my treasured Tink pictures. 

Below is Tink's brother,  Wilby,  and I grieving yesterday afternoon.  


In peace and love.

Stephanie and Tink