I'm Sick...

As you may know from previous blog posts, I have been battling endometriosis. I was officially diagnosed in 2015. I have had 4 surgeries in less than 5 years related to the disease. My last surgery was in December of 2017. Unfortunately, all of the symptoms and pain point to the fact that despite an 8.5 hour excision surgery, the endometriosis is back.

It's an invisible illness, which means I look normal, but on the inside, I feel like I'm being ripped apart.

I wrote this post on Facebook and have been meaning to get it up on this blog as it IS related to infertility. (But it also goes along with the theme that this page is no longer JUST for infertility - still working on changing up the description, main photo, etc.). And now - with the pain back in full-force and feeling judged and shamed for my invisible illness... I have decided I really need to get this out there.

Awhile ago, I joined a couple of endometriosis support groups on Facebook. After seeing more than one post from fellow warriors wanting to just call it quits... I'm angry and sick. At the time I wrote my original Facebook post about this in June, I was at that point, too. The point where I felt there was no end in sight and death was a better option than living one more moment on this earth with the pain.

I'm sick... that for these 1 in 10 women, it comes down to the thought of suicide or enduring another day of this highly misunderstood illness.

I'm sick... because the sad thing is that it isn't always the pain that pushes endometriosis patients to the dangerous edge of wanting to choose death over life. The pain that has us begging for death - not caused by our own hands, but just begging God to let us die.

I'm sick... sick of the pain that lands us in the emergency room - knowing full well we could be treated like someone seeking pain-killers to get a high and not a patient in so much pain that we take that risk of being treated poorly in hopes of being treated like a human being in so much pain, the ER felt like the only option.

I'm sick... of the real world situations we face. Like being told to "suck it up", "it's just bad cramps", it's in your head", by friends, family, and even worse - doctors.

I'm sick... of seeking medical care and being brushed off time and time again by doctors who aren't educated enough about the complexities of endometriosis. Many women go 7 or more years before receiving a diagnosis. And I'm sick of this being acceptable.

I'm sick... of finally finding a doctor I like and having insurance deny the procedure that is needed.

I'm sick... of being unable to work due to the pain.

I'm sick of feeling judged for not being able to work - whether it's just in my head or I'm truly being judged.

I'm sick... of worrying about whether or not this disease is going to prevent me from providing for my family.

I'm sick... of missing events and not being able to commit to anything due to the unpredictability of flare-ups.

I'm sick... of feeling anxious and depressed or seeing my existing depression and anxiety worsen because I'm unable work, socialize, or make plans.

I'm sick... of the exhaustion I feel from being in constant pain.

I'm sick... of not being able to be intimate with my partner because of the pain it causes.

I'm sick... of feeling like a constant burden to my family, to my friends, and to my coworkers.

I'm sick... of feeling like I owe the world an explanation. Whether it's an explanation for why I can't do something or explaining for the millionth time my pain.

I'm sick... of feeling invalidated by so many people - including doctors.

I'm sick... of constantly having medical debt.

I'm sick... of letting down my bonus daughter because I sometimes can't do things or be at things because of the pain.

I'm sick... of missing events with family.

I'm sick... of using all  of my time off from work not for vacation, but for doctor appointment after doctor appointment and time off due to the worsening of my symptoms.

I'm sick... because we could do better about education and treatment - but we don't. Endometriosis is so misunderstood. It can only be definitively diagnosed through a surgical laparoscopy. Hormone suppressants like birth control, Lupron, and the new drug Orlissa, only mask the symptoms. Certain treatments used long-term, like Lupron, can cause long-term damage, including osteoporosis. It's not JUST retrograde menstruation. A hysterectomy is no certain cure - in fact, the only time you might find relief is if (1) you have adenomyosis where there are growths INSIDE the uterus or (2) your surgery was performed by an excision specialist who ALSO excised any endometriosis in your body. Endometriosis feeds off of estrogen - estrogen which the disease itself can create (interesting, huh?). Endometriosis doesn't always just involve the uterus, ovaries, Fallopian tubes. It can impact your bowels, and bladder. In more rare and severe cases, it can involve your diaphragm and/or lungs (thoracic endometriosis).

I'm sick... sick and tired of screaming (not literally... yet), begging for help, only to be brushed off over and over and over again. To me, that's worse than the physical pain, even on the worst of days.

And I'm not the only one who is sick of endometriosis.

If this speaks to you - or if you think it may speak to someone you know - please share this post. Help validate your own feelings or someone else's.

I'll share my latest Endo journey in a future blog post.

For now - to my fellow warriors, please reach out to me if you need support and validation. <3

Love,

K

The Beauty of the Lotus

I fell in love with the Lotus flower and the concept of the Lotus when a fellow warrior shared her story. The story about how the lotus blooms and grows out of murk and mud. There are many stories about the lotus flower and I know it is symbolic to many people around the world, especially in Buddhist culture.

While certain colors of lotus flowers have special meaning, to me, the beauty comes from the fact that these flowers blossom out of seemingly impossible conditions. While they are gorgeous flowers when they bloom, you cannot see what's beneath the surface. What is visible to us has roots in something dark and dreary.

This blog has served as an outlet for me to share our infertility story. To talk about our particular journey and share what has helped or hurt. To bring light to the topic that is still pretty taboo in our society even though 1 in 8 couples face it.

However, I believe we are at a place where our ongoing journey to add to our family has come to a close. We have a couple of options we have discussed - but none of them involve treatment to try to achieve biological children.

For some time now, it has become a vision of mine to expand and evolve what the Little Lotus Project represents. I want it to represent more than infertility. I want it to include more than just my personal stories and invite guest bloggers to the page.

The hope - and increasingly major dream of mine - is to help encourage and facilitate having open dialogue about the "muddiness" in our lives that is currently or already been overcome. I want us to talk about the difficult situations life brings - both the battles that have been overcome and those that are still being fought before you can "bloom".

While it's TERRIFYING to share our stories, doing so has the potential of not only providing hope, encouragement, resources, and education - but it could also give someone else who reads our stories the much-needed validation they are looking for.

Mental health disorders, death, divorce, illness, chronic illness, loss of a job, and more - these are the things I hope we can share here.

I will be looking for guest bloggers. You don't have to be a professional writer. You just need an open heart and mind and a passion for sharing your journey in hopes of helping others.

If you would like to be a guest blogger, know someone who would want to be a guest blogger, or have a topic you're interested in me covering, please email me.

You can also find us on Facebook and soon you will be able to find us on Instagram.

It is my dream to see this project grow into something beautiful. To see the ultimate lotus. The lotus born from the murk of our collective struggles. The lotus born from our collective strength and perseverance. The lotus born from us coming together to bloom into beauty.

I am so excited to see where this blog goes. And I am even more excited you're along for the journey.

Love,

Kristy