Just another manic Monday...and Tuesday, and likely Wednesday.

Well, this has been one of the longest weeks of my life. Anxiously making my return to work after nearly a week off AND I have my consultation appointment at UCLA tomorrow afternoon!  Physically this week has been rough. Nearly endless nausea, vomiting, chest pain, shortness of breath, severe pelvic and abdominal cramping, insomnia-- sounds like fun, eh?

Well this is what a sleepless night, filled with puking, cramping and sharp chest pain looks like:

But with a little make up, redheaded determination and brushed hair and this is what it looks like when the above monster goes out in public, or in this case, to the office.  This was my best attempt to look like a "normal", working, healthy woman instead of the sickie I feel like.

After several trips to various emergency rooms and seeing, also telephonically consulting with a few doctors it is FINALLY tomorrow that I will be going to UCLA to meet with a surgeon to discuss my symptoms and DEVELOP A PLAN OF ATTACK. My goal of course is to get back to a normal life as soon as humanly possible.  I am so exhausted physically from being ill and emotionally am extremely distraught from the devastation resulting in this painful relapse after my last surgery in June; I mistakenly thought that I would be "cured" after that and have been just absolutely overwhelmed by the emotions that have accompanied this physical relapse and increasing of symptoms.  I am sooooooo incredibly nervous and excited about this appointment.  I am nervous that the problem will be really bad, as I have already been given some possible diagnoses from various doctors thus far and none of them are anything that I want, and I am excited.  As I am trying to relax to get a good night's sleep before what will no doubt be a long day, I am trying to feel calm and rest in the fact that UCLA is a renowned medical and educational conglomeration and I have complete faith in their medical expertise and know that they are on the cutting edge in treating complex issues and diseases.

Below are some images I've collected over time online. They each speak to me for various and likely, obvious reasons. Just wanted to share some that feel pertinent at present.

Signing off, in hopes of health and healing to be mine shortly.

Regardless of whatever happens at my appointment tomorrow at least I know I will be indulging in some cat love with my boy Tink- that makes everything easier and more tolerable.

namaste, in health.

H O P E (my *LEAST* favorite 4-letter word)

The past few weeks have been so freaking scary and intense.  I've been excitingly some new and very uncomfortable symptoms.  I've had several ER visits and checkups.  I'm terrified by the working diagnosis we have tight now,  unfortunately each doctor I've seen so far has agreed.  I will be seeing a UCLA specialist this coming Wednesday.  Fingers crossed that if nothing else,  a plan of action is made.

Above is from the ER visit.  The is nothing more uncomfortable or disconcerting than coughing and vomiting blood,  aside from having the taste of blood in my throat at all times.  It really makes me sick just thinking about it.  I've had a lot less bloating,  but below is a very bloated day.  

And aside from the taste of and coughing/vomiting up blood,  I'm also unable to take a sufficiently full breath.  I'm constantly tired,  unable to fully relax due to fear.  I'm terrified about what is wrong.  The symptoms are so scary. 

My cat is such a love and takes such great care of me when I'm not feeling good.  He gives me massages and some he's so big they actually feel really good!!  He and his brother Wilby have been cuddling me together,  rich is definitely not their norm.  They just know how severe and overwhelming the symptoms I've had have been.  They take their care very seriously, at least one of them is with me at all time,  if not both of them! ♡  They're very special!!

He's very very handsome.  I feel very blessed to be his human. 

Nothing really makes me feel better,  sometimes though it is less severe than others.  Loves and kitty kisses are exactly what I need and they help take the edge off of my symptoms.  They make it hurt not as much.  

Cat love is the best love.  

♡♡♡

Below is the incredible difference I experienced in one day,  the morning,  or the before picture is on the left and after work, 8 hours later is on the right.  Pretty amazing!  That is a pretty significant change! 

The thing that has been on my mind lately is H O P E. I'm scared of hoping.  I am terrified of this relapse.  I don't want to be hopeless,  but I also don't know how many more times I can take having such hope in a treatment or whatever I'm trying,  just to be dashed by a relapse.  I'm trying to find the balance between being realistic and realizing what is possibly going on right now,  hoping it is something simple...Hoping the diagnosis I'm given doesn't have the word endometriosis in it.  I think the phrase is: 

CAUTIOUSLY OPTIMISTIC.  

I'm still trying to figure out what this place looks or even feels like.  But I'm trying. 

I think I'm gonna try to write my way through this process.  I think that'll be the way I can process what is going on. 

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. ♡

what is it like to have an endo flare up?

People have asked me what it is like to have a flare-up. So I'm going to share the nitty gritty here about what it is like, and no I'm not

 going to censor myself. 

Unfortunately right when I started this posting I began a three-day, and STILL going strong, flare-up. So I'm writing this from current and past experience. I've also decided to include pictures because I feel like pictures can say things words cannot.

This first picture is me RIGHT NOW. Yes, I'm crying, in a ball on the couch. It hurts too much to sit up and for some reason being in a ball position helps, or is the common position in which I find myself during a flare.

I experience a wide variety of symptoms

 during a flare:

Nausea, like not able to move nausea

Vomiting, I've spent many a night on 

the bathroom floor

Increased bleeding, sometimes large clots pass

Hot flashes

Chills

Excruciating pain

(Some types of pain: 

pulling, squeezing, stabbing, 

squashing, pressure...)

Back pain

Leg pain

Bloating

Crying

Moodiness

Sometimes, but not always a flare can be accompanied by a far along pregnancy type bloating. I was bloated yesterday and am not today. I cannot find any triggers to my bloating but it is quite uncomfortable as you can imagine.

The following picture is from one of my hospital visits this year. For some reason, for me anyhow, nighttime is the most painful, 

whether home or in the hospital. 

Though various parts of flare-ups change from time to time, the only constant is my kitty. He is ALWAYS there to support and love me. He will frequently cuddle with me when I'm crying and if it gets really bad he'll lick my forehead to try to help. He is such a great kitty cat. He knows when I don't feel good and tries with all his might to make me feel better.

In 11 days I will be undergoing excision of endometriosis and lysis of adhesion surgery with the AMAZING Dr Cook of Vital Health Institute. 

A note about Vital Health Institute:

After years of being ignored and blatantly mistreated by the medical profession, I contacted this office with low expectations. The first person I came in contact with is one of the most incredible, caring, compassionate, kind people I've met, Margaret. She's one of those people that always leave you feeling better than before you talked. Truly amazing. With her being so amazing it should've come to no surprise to me that Dr Cook would be so amazing, but it did, it truly took me aback to be so cared about by a doctor, even after he learned I have endo. Normally that is the point where doctors label women as weak, drug-seeking, mental, exaggerating, etc. But Dr Cook has dedicated his entire career to the health and welfare of women with endo. He is so gentle, respectful and truly wants to help me to feel better.

I just can't say enough about this man and his entire office staff. I'm greatly looking forward to surgery day and to this all becoming a distant memory. I'm also looking forward to writing my first post-op blog, which will likely be written from my hospital bed.

Thank you ALL for reading and wanting to learn what endo REALLY IS. I hope this blog serves as a vehicle of awareness, no matter how small. It is important for people to see how much this disease truly impacts and changes every aspect of our lives and the lives of those around us. 

~namasté.