Happy NYE

Just wanted to wish a happy, and more importantly pain-free and healthy 2014 to all of my endosisters and dear friends.

We've gotta keep faith. Faith that eventually there will be an effective treatment. Faith that our doctors truly want to help us feel better. Faith that education, support and knowledge will replace the widespread ignorance regarding endometriosis. Faith that people will begin to understand what we go through day in and day out and withhold their painful, and usually incorrect, judgments. Faith that WE WILL GET BETTER. . . Now I'm writing this at the end of my third day in a row of being in excruciating pain, so I'm fighting to hold on to mine.

I'm planning on writing a longer post tomorrow...as for tonight, I'm completely medicated, covered by my kitty, my Lulu savasana sweater, tons of blankets, ugg boots and heating pads.

Let's all hold onto or Faith as we step into 2014.

Love, love.

Katie: a collective

Well it's been a very long week and didn't have much time to write. My endo is causing me such incredible bloating, nausea, pain, blood loss, exhaustion and sleeplessness. 

For some reason I'm being pulled to share some of my bloat pictures. Do any other endosisters out there experience this?? 

It's becoming more and more difficult to get through the day(s) without crying. At times the 

emotions that accompany all I'm going through, and have been through physically, is super overwhelming. 

It is even more difficult for people to understand what this is like. I'm blessed to be surrounded by a group of supportive people in my life, which helps more than words can say, but don't have people that truly get it from .

their own experience.

I've received all kinds of completely insensitive comments like:

- You just have a low pain tolerance

-You use it as an excuse to get out of doing things

- It can't be thaaaaaat bad

- You just need to toughen up

These comments just show how insensitive and ignorant our society is in a disease.that impacts one out of ten women in America

Next week I'm scheduled to begin hormone therapy- called Lupron. This treatment is super controversial. Something within me right now is telling me it WILL help. I am going to give it a try.

Every morning I take a picture of Katie, my bloat-- yes, I named her. The bloating is one of the symptoms that none of my medications do anything to help. I've had to buy maternity leggings because sometimes I cannot even fit into my clothes.  I've lost 12lbs since I went and saw my specialist like two weeks ago... but the bloat is still there.

Well, thank you all for taking the time to read this... if you have comments or questions or want to share your story, please do not hesitate to do so.

 

Wishing you all a steady path of BRAVE HEALING!!

BRAVE HEALING

°°° please note: For some reason I cannot get the bold or underline to get right, so it is what it is...

This afternoon I had the most amazing healing and reiki session with my teacher. She knows a lot about my current issues and the infamous return of the bloat. She also writes Sharpie mantra messages on me if she feels so inclined. This afternoon I asked for BRAVE and then she did the HEALING one right on my bloating.

Seeing these two words together has really stirred something deeply within myself. Several people in my life call me brave on a somewhat regular basis, which always makes me look around to see of whom they could be referring... I have never considered myself brave, ever ever ever. But after seeing these words together it came to me, you MUST be BRAVE in order to experience true HEALING. My goal is to have a true, heart-opening, physically internal, soul expanding HEALING as I conquer, truly conquer this vicious disease.

Just writing this blog is helping me with that. I'm trying to destigmatize not only endometriosis itself, but the taboo-ness of women's health in general...I mean c'mon, we each came from a woman, their health is kind of vital to future generations. Time to get our act together people, really, and save our women.

Personally I experience a lot of shame with my disease and feel it is time to put that shit out. The fact that my body is not doing well, and has seemed to have turned on itself, doesn't make it my fault, or mean that I am in any way bad...this is an idea I'm completely working on now, as I still feel the punishment/shame that goes along with this. Like this evening was one of my favorite events within my meditation community, the winter solstice. I'm so ashamed and embarrassed of Katie that I seriously contemplated not going. I went, and was instantaneously glad I had done so. I was literally surrounded.by massive, big, high LOVE. Because endo takes over and even ruins parts of my life, I forget sometimes that I am NOT endometriosis, it is simply something I have and it is NOT my identity.

At the solstice event I found my intention for 2014 to be BRAVE HEALING. Though I'm feeling pretty stable and steady, there is a myriad of emotions running through my body and mind at any given moment. 

I have a lot more to say but am absolutely exhausted, gonna hit the sack and do the part 2 tomorrow!

namasté all. Happy Winter Solstice!

Salt to the womb

I'm finally on all of my meds that the Dr suggested. Still not feeling good, but there was a small improvement.  However my bloating (aka Katie) is continuing to grow.

It seems the latest theme of my endo discussions and personal experience is the highly painful irony that this disease that can either cause directly or indirectly (like my having to have a hysterectomy at age 28 because of my symptoms) infertility...then the same disease gives you bloating that looks like pregnancy...you have to walk around, everyone assuming you're pregnant, while you're unable to ever have children, or at least bear your own  and are likely in excruciating pain that accompanies a bloat that big. It really hurts, really. It is like pouring salt into an already gaping wound, or pouring salt into the womb, I suppose in this case. As if the physical symptoms alone aren't torturous enough, the emotional issues that stem from endo make this disease unbearably painful- in every way. I am struggling to hold onto hope...really struggling. It just hurts so much and causes major discomfort. The nausea adds to it and has returned also.

I'm absolutely terrified of my life becoming the nothingness it was for so long. This disease has taken away, or over, so many parts of my life and it is very scary,  frustrating, sad to have been diagnosed with the same disease.

Tonight I'm assisting with and attending a very special Winter Solstice celebration and I'm absolutely dreading going with how big Katie is... I don't have a standard response yet for the pregnancy comments so they still completely throw me off.

Hoping for an easy day for all of my endosisters out there, including myself.

and here we are again...

Even though it's been a few months now that my symptoms have returned that I am STILL somehow in a slight stage of denial. I simply cannot believe after all I've been through, physically, emotionally, spiritually, that I have found myself here. I look around and so much has changedsurgeryet so much has remained the same.

Lugging around this extra bloat makes days feel weeks long. I cannot believe I lived like this for so many years before; I do, however, know now that I cannot go on for that length of time in such misery and absolutely will not allow that to happen. As Roseanne Barr says, we are not given power, we must take it. I have got to dig deep to find wherever mine is hiding, but it must be hiding in there somewhere.

I have found myself, yet again, on several medications...luckily most of which are on a prn basis. 

  

Such a hard day today. Had to come spend my lunchtime with my baby, cried into him for a little while, that most definitely brought me some most needed comfort and LOVE. 

He is just the best, most sentient little beast out there and I'm so lucky to be his mommy. I 

love love love nothing more than my tinky cuddles and loves.

 

Aside from the physical and emotional stresses cause by endometriosis on a daily basis, I have a medical insurance snag that could possibly impact my proposed treatment plan, that really seemed my only non-surgical option. I was counting on the injections working, thus avoiding surgery. Fingers majorly crossed. Not even going to entertain this possibility.

Ugh, hoping these medications will offer some relief overnight and tomorrow.

After a hard, hard day. . . comes an already difficult night.

Today was a very difficult day, physically and emotionally. It was my first day back to work having to wear pregnancy pants, while not being pregnant. Of course because I'm completely self conscious about the bloat (aka Katie) I felt like everyone I encountered the entire day was staring at me, wondering, or worse yet, judging-- which alone is super exhausting.

It seems to me to be so unfair that while one of the most difficult to bear side effects of endometriosis is infertility that another side effect makes one look pregnant. It can easily become overwhelming when people ask how far along I am, simply offer congratulations, or even brazenly touch it/her. Sometimes I react in sarcasm, that honestly the person doesn't deserve, because they are truly wishing me well...but that sarcasm is a mask for the pain that accompanies the discussion that their comment has started. Goodness that is even difficult to admit in the safety and somewhat anonymous world of the blogosphere.

What makes me feel even worse but is somewhat related, is my reaction to pregnancy announcements, pictures, baby pictures... it strikes a chord of such a deep, dark level of sadness and loneliness that only as of late have I even admitted to myself of experiencing. That reaction, and the reasons for it, doesn't at all diminish the true joy I feel for my friends and even strangers who get to experience this amazing miracle in their lives. It just currently feels like my own wound.

Femininity (in our current culture) is nearly equated with, if not dependent upon, fertility. I feel like this has forced, or placed I suppose, me in this place where I must rediscover, redefine and relish in my femininity, my divine feminine. I'm not sure how I will accomplish this but I feel this completely uncomfortable place is where I'm being led, where I'm meant to be.

I feel like endometriosis isn't talked about nearly enough, or understood, or even accepted. The emotions I've shared in this entry in particular are incredibly shame-inducing and it is difficult to share them, but I feel called to write this. I hope maybe one person at least reads this and either feels less alone in their own feelings, or someone else finds a deeper understanding of what this disease does to women. I feel like this entry was kind of a downer but want to end on a positive note that my friend, a wonderful, true sister of a friend wrote to me, which of course left me looking around me to see who she could possibly be referring to:

You are brave.
You are resilient and you are conquering your shame.
Your body is healing, and you are a warrior for peace.

Signing off, yet again wrapped in a heating pad, covered in tons of cozy blankets, my lovely kitty cuddling, cramping to a whole new level, hoping for relief to find me at some point tonight.

Sending big loves to my endosisters, wishing you peace, comfort and relief.

Thanks for reading.

Namaste.

Living in my Maternity Leggings--and Happily So

Well, I actually slept last night and got up pretty early and went interesting and intense hike which included four miles of walking and a total of 1,117 stairs. Wow, my legs still feel like noodles. Below are some pics from my walk.

I'm still incredibly bloated and cannot fit into my normal pants-- going to be a long week -- wearing a lot of leggings, I suppose. Luckily I'm not in a lot of pain this evening, not close to comfortable, but have also been way worse.

It hit me a little deeper today that this is even happening again. While I was walking with my friend we were of course talking about all kinds of things, as we do every week. There are some upcoming activities and trips that I really will not be able to participate in and that is all to familiar.

I am working very hard at NOT becoming angry about being in this position again...or being mad AT my body. Being mad at my body will do nothing but make things worse, which is the last thing I need.

As my very wise teacher instilled in me yesterday as a new mantra:

I forgive myself, my body for everything.

Though this statement feels far away, I have been doing some meditation on it, with my hands lovingly on my ever so swollen pelvis/abdomen. My cat, lovely tink, has also been spending a considerable amount of time cuddling and kneading my pained abdomen. Hoping some kind and loving energy will help to soothe the craziness going on inside my body.

For tonight I'd like to end with an inspiring quote, with LOVE to each of you who took the time to read this and to each of you who trigger have our know someone who has endometriosis:

When all you know is pain you don’t know that that is not normal. It is not a woman’s lot to suffer, even if we’ve been raised that way.

It is not OK to miss a part of your life because of pain and excessive bleeding.

It is not OK to be bed-ridden for two-to-three days a month.

It is not OK to pain during sex.

It is not OK to have major bloating or nausea.

Susan Sarandon

P.S. the endometriosis-related images I did not create and am not taking credit for, they are simply images I found significant while surfing Google.

The Bloat has Returned

I have so much to say tonight:

First, I saw my gynecologist this week and have received the unfortunate confirmation that the endometriosis has returned. The treatment that was proposed is even more unfortunate. I heard the dreaded word: LUPRON and my heart sank. Yikes I was on a Lupron regimen a few years ago and all it did was (after a short reprieve from my endo) add the incredibly uncomfortable issues that accompany menopause (hot flashes, night sweats, insomnia, insatiable appetite, deepening of the voice, facial hair, the list goes on). I'm not entirely looking forward to this therapy to be completely honest, but because I've had a total hysterectomy (ovary sparing) the treatment options are limited. We will try a six month stint of the Lupron and if it doesn't work, we will approach ovary removal and surgery to either burn or scrape out my endometrial implants. I'm going to put all of my energy and focus on MAKING the Lupron work this time.

Then yesterday my bloating returned. . . I look about 7-8 months pregnant. In just one day I've had three people approach me and ask when I'm due-- which since I've had surgery to make fertility impossible can be painful for me. People mean well and truly wish me well in my pregnancy, but it is really difficult to go through daily. When I had this bloating years ago, my girlfriends and I named it Katie. In the past I have HATED this bloating, it's painful, embarrassing, inconvenient (clothes don't fit), expensive, shameful... My goal now, thanks to the support and suggestion of a very special friend, is to LOVE Katie, and my endometriosis to health... even though this disease does COMPLETELY SUCK (and trust me it does) -- it also offers an opportunity to grow and evolve both spiritually and emotionally.

I simply cannot believe that I'm in this place again. Deciding to have a hysterectomy wasn't an easy decision, but considering the pain and true agony I was in, it was the only option I saw fit for my survival... I think I used the benefit that I did enjoy for a year and a half of feeling so much better as a way to avoid grieving the loss resulting from the hysterectomy. The return of the symptoms has not only been a physical slap in the face with the myriad of painful, scary, and inconvenient symptoms, but also emotionally a completely unexpected grief-filled time filled with sadness, disappointment and wonderings.

Namasté. And I deeply thank you for taking the time to read my blog. My goal is two-fold:

For myself: to help process and express the emotions that go along with this process and to help rid myself of the useless shame I feel

For others: I'd really like to see a growing of public knowledge about how debilitating this disease is to girls and women across the world, and in some small way I feel like maybe my blog and and sharing my experience will help educate even one person just a little more on what this disease is

And tonight I find myself cuddled with my kitty cat, wearing my new pair of maternity leggings-- which are the best thing in the universe, by the way-- wrapped in a heating pad, covered in a bunch of cozy blankets, sending healing love to my dis-ease.

Sending LOVE to all of my endosisters out there.

The Ominous Return

I was pretty sure, hell I was completely sure, that having a total hysterectomy would offer PERMANENT relief from my endometriosis.

It is with utter disdain that I report that a year and a half after my hysterectomy that my symptoms have slowly begun to return and just about every symptom has returned. I'm experiencing pain and other symptoms just as I was before with no difference, which I don't fully understand since I'm missing a few major organs, but my understanding of this doesn't really matter.

Tomorrow morning I'm off to my new primary care physician to obtain my referrals back to my original surgeon from several years ago. Hoping to get in with him soon.

I must admit I'm absolutely terrified, to the point of tears, of my life returning to the painful, nauseating nothingness that it was for so many years.

But with ending on a negative feeling I feel I need to leave a positive quote:

The most important thing in illness is never to lose heart. 

~Nikolai Lenin