Time to ENDO the Silence

This post will NOT be pretty, but much more importantly it will be a completely accurate description of my experience at present.

I woke up this morning quite tired and in moderate pain,  but feeling way better than my status quo as of late.  As my day in the office progressed so did an overwhelming wave of nausea and severe pelvic cramping.  Luckily,  if you can call it that, I made it to the bathroom in enough time to puke, which I did several times before my coworkers offered to drive me home -- well to the hotel that is my temporary home (another loooooooong story).  They brought me here,  got me checked in and helped me get comfortable.  I slept really soundly and deeply for about an hour and a half.

When I woke up I warmed up my glorious heating pad,  changed into comfy endo-appropriate pajamas,  put some essential oils on and laid back down with my laptop, watching some shows on Hulu and writing this blog.

So I've been home lying down for nearly 5 1/2 hours now and here is a list of the symptoms (going to include both physical AND emotional) I'm currently experiencing:

Excruciating pelvic spams and cramping
Overwhelmingly strong nausea
Frequent bouts of diarrhea
Shakiness and weakness (hence my not driving)
Exhaustion and restlessness at the same time
Excessive vomiting
Moderate blood loss while going to the bathroom
Sadness
Confusion
FEAR
Anger
Loneliness
Hopelessness
Overwhelmed
Frustration

I guess that about covers it.  I assumed,  stupidly apparently,  that my excision surgery less than a year ago (June 17, 2014) was going to be my miracle.  Well folks,  I'm still searching for my miracle,  hoping to stumble across it soon.  I have a feeling it is coming to me in a variety of ways: I'm  exploring Chinese medicine,  herbs and acupuncture and yet another new doctor who can hopefully help me take care of this once and for all,  or at least give me more than an 8 month reprieve from this out of control suffering.

It is my mission to not remain silenced about my condition and experience: one motivation is to help raise overall awareness but another is selfish in needing a place to vent,  cry,  sort things out and share my story without censoring and helping myself to remove the cloak of shame, guilt,  and embarrassment that truly taints my experience.

Thank you all for taking the time to read this. 

Going to try to take a bath and rest tonight. If it gets worse I'm heading to the emergency room.  Either way I'm likely doing either urgent care or the er tomorrow morning.

namasté and love ♡♡♡

        Vicious nausea and pain

Finally laying down in bed, not feeling much better at all but it does help to be able to lounge.

Here's my Bengal nurse,  Tink,  who takes such excellent cate of me.  He seems to always know exactly what I need.  He is just a big ball of healing,  purry loves.  Missing him tonight,  wishing he were with me,  instead of being all alone. 

In March We Wear YELLOW

Yesterday I had the amazing experience of traveling up the gorgeous coast, up to Palo Alto for the WORLDWIDE ENDOMETRIOSIS AWARENESS MARCH!  And the only way I was able to go is my best friend was willing to take a day off of work to drove me up there.  I think with doing this event together we've grown even closer.  She's been such a source of support throughout the years of ineffective medicinal treatments, when I had my diagnostic lap, my hysterectomy, my countless er runs and hospital stays. Thank you,  Karines,  for being such a great friend.  I love you ♡♡ ♡

It was my first time going to this event.  I had the pleasure of meeting so many beautiful, strong, supportive endometriosis sisters who I had previously only known on our Facebook groups and chats.  It was indescribable to be surrounded by other women who understand exactly what it is that I've been and am going through.

While it was great to be there, it has cut me to a deeper level to hear more than once that there is no cure - even though I've known that all along.  I'm not sure why it hit me so much more this weekend, but it did -- significantly more.  I find myself experiencing a barrage of emotions tonight as I reflect on this powerful experience: sad, scared, angry, frustrated, loved, hopeless, lonely, disappointed, confused, devastated,  overwhelmed, taken advantage of, let down, and possibly most importantly grateful for the support I DO have.

My current struggle is this: ok, so there is no cure, but there are things that can help offer relief from symptoms.  I have tried countless things along my journey with this disease.  Knowing there is no cure, and already having my hope devastatingly crushed more times than I can remember: I need to find MY right balance in still having hope for some relief but not being foolishly accepting of people or treatments,  surgeries, medications, that may make claims that they are unable, or unwilling, to deliver.  It is hard to balance the HOPE with the FEAR.

I do not know how I will get to this place. This place being of peace and acceptance but to be mindful, conscious and aware of it not sinking into resignation.  I'm going to use this blog and my journal to try and sort this out (writing is such an incredible resource for me).  I know I will eventually get to this place and I hope by my sharing I can help any other sisters struggling in this or similar ways.

I'm hoping that by sharing my journey and not only the devastating physical issues but the emotional aspects, I'm doing my part to help end the silence and lift the veil of shame and secrecy that has long been shrouding endometriosis, and really women's overall reproductive health, as a while for way too long.

Thank you from the bottom of my heart and soul for taking the time to read this. 

 

Please feel free to comment here or email me at acardiganlover@gmail.com if you'd like to connect or just need someone to listen or vent to, knowing I get it.

***I know first hand how dark and hopeless this process can feel, and I've myself contemplated suicide more than once over my 18 year battle with this disease, the never ending pain, the friends we've lost along the way and the medical mistreatment we frequently endure can feel completely overwhelming.  So I urge any fellow sisters to reach out. Nobody understands our plight more than other women in the same boat,  so please reach out.  If you find yourself in that dark, hopeless, lonely place,  please please please reach out.  I would do anything I can to offer as much support as I am able. ♡♡♡  I felt so alone for the first several years of my journey and I want to make sure other girls don't feel that way.  I would love to help in any way I can.

Sending BIG hugs, deep thanks to all of you who are reading this. 

~namasté

Please feel free to share this as well.  I want to really grow my blog into a resource of safety, love, healing, sharing, where everyone feels comfortable enough to share.

I've included some of my favorite pictures from yesterday's event, hope you enjoy!

 ♡♡♡

Getting ready in my tutu :)

My marathon number! 

Getting my make up on and ready to go!  Getting excited! 

Met an incredible new friend and I'm greatly looking forward to getting to know her more ♡ 

Was given the New Zealand ribbon to show support to our worldwide sisters.

Getting ready to march!

Marching around Palo Alto High School.  Got a lot of honks in support and acknowledgement.  Seeing these hundreds of women and their supportive, loving people who help them hang on was seriously heartwarming.  That is where my tears started!

Before we started marching we released some yellow balloons for our fallen sisters

This is the sign I used on our trek.  I really like it! 

Had to do tree pose in my endo tutu and my combat boots for some interest :)

Me and my bestie, so incredibly grateful to have her in my life xox ♡ 

Almost to the end,  holding up our signs: doing our part in raising awareness! 

Tree pose with prayer hands in the back -- Lemme tell ya, it is such an incredible chest opening yoga technique

But it came back. It just couldn't stay away.

       
So. . .  It has been a significant amount of time since I last posted, within this time most aspects of my life have undergone changes.  Physically I was feeling incredible and a relapse was not only the furthest thing from my mind but it didn't even feel possible.  I've moved about an hour away from my old life and childhood home and accepted a new job in December of 2014 in Ventura and I couldn't be happier- in that aspect of my life. 

DUN DUN DUN. 

Several weeks ago I had a quick twinge of pain while relaxing,  watching TV one night.  I ignored it believing that couldn't be this problem coming back,  it simply couldn't be, it must've been just a passing fluke.  Alas another week passes and every single symptom I previously experienced had returned, including an incredibly and uncomfortably bloated belly. So unfortunately my new life that was just beginning to feel more and more like home to me has been exposed to and poisoned by this awful disease and life-interrupting symptoms. Luckily my work has been incredibly understanding.  They've been more understanding about this than I have.  I cannot get over the shock that this is even really happening.  My surgery was not even a year ago and I'm experiencing the same level of pain. This was simply not supposed to be happening! 

Now I'm learning that it is more common than I knew for women to need more than one surgery due to adhesions recurring.  And unfortunately there are things to do to help with symptoms but the ONLY way to deal with adhesions is to surgically remove them. And guess what?! Adhesions are caused by scar tissue and surgeries.  

Compared to some other postings I've done,  this one is purely from an emotional place;  an emotional place feeling terrified,  scared, confused,  sad,  frustrated,  angry,  disappointed,  hopeless,  lonely. I'm nearly crying at all times.  Just can't get over the shock. 

This following picture basically encompasses how I'm feeling at present:


         

And here is my bloated belly. It hurts so bad. I've been yet again experiencing people asking if I'm pregnant,  or how far along I am,  and wishes of congratulations and wellness from people assuming because of my age and how bloated I am that I must be pregnant. It still hurts just as badly as it did when this happened  before.  I absolutely despise seeing people in public now because I dread the moment that people will approach me in that way. 

              

This weekend I'm going to the ENDOMETRIOSIS AWARENESS MARCH in Palo Alto, CA. I'm so very excited.  Looking forward to donning a yellow tutu with my best friend and raising some awareness at what I'm sure will be an inspiring and emotionally charged event. 

If you are planning on being at this event,  maybe we can connect,  my email address is acardiganlover@gmail.com shoot me am email and maybe wet can meet up :)  ♡

With love,  and determination,  I vow to work more regularly blog and to do my part in raising awareness of this paralyzing,  yet incredibly unknown condition. 

namasté. ♡