The Struggles of Endometriosis and Chronic Pain (as Explained With Buffy GIFS)

I'm here to walk you through the life of person living with chronic pain and/or autoimmune issues. I will warn you I am feeling a little angry and sad today. 

You've been warned. 

About three weeks ago, I had an appointment with a new pain specialist. It's safe to say I've been struggling with health issues longer than he had been practicing medicine. Regardless, I tried to be open minded with the new guy, and not let my mind think the worst. 

The past fifteen years, I've encountered many a doctor, family and extended family members, and friends that had a limited view on what it means to be in chronic pain and have autoimmune conditions. 

Surgeons and specialists can be a particularly tricky bunch, when they don't have experience dealing with your ailments, surgeries, and pain. I've internalized a lot of the hurtful comments and opinions all these years, and tend to surface when meeting a new doctor, or someone is asking a whole lot of questions.Now that I'm aware this, however, I remind myself, "This person is just coming from their point of view, experiences, health, cultural and societal beliefs, and is not meaning to be hurtful. Check yourself."  

Lately, (and especially this last year) it has been very stressful, and I have been taking more to heart than I need to. WHICH IS NONE. 

Most of the time, when they are coming from ignorance, and a general lack of understanding, I can be like:

and let the person share their opinion on, say, Fibromyalgia or Chronic Fatigue Syndrome (both which I was diagnosed with). 

It doesn't help to get all heated, when faced with someone that doesn't understand what you and your body is going through. I think more than anything, I look for empathy in a doctor/friend/significant other. Honesty is number two. 

When a doctor/friend/idiot says things like, "I've never heard of period cramps being so bad. Maybe you just have a really low pain tolerance." 

And it's particularly annoying when a MALE doctor tells me just to ignore the mind-numbing, fetal position, every*part*of*my*body*hurts*SO*DONT*TOUCH*ME-type cramps,while advising to just get pregnant, then it will stop. 

Oh, but the particular doctor didn't discuss it with me. Only with my ex-boyfriend. While I sat at the same table. 

No, really. 

Besides that pregnancy is NOT a cure for Stage IV Endometriosis, it is and should be MY decision whether to even try or not. I am the one dealing with the pain, yes? 

Okay. 

Also, I am a person, not a 50's fictional Stepford wife. 

Please acknowledge me. 

To his credit, though, my ex was upset and fully supported my choices regarding my health. He knew it wouldn't improve my symptoms, nor 'cure' endometriosis. 

It can be a really frustrating thing; that basically you have to educate these doctors stuck in the 1960's, friends, family, or partners that don't understand why you suddenly cancel plans,  or leave early. 

*OR*

People can be particularly hurtful and clueless, saying how much better they would handle it than I. ''Just ignore the pain, it's that simple," they say. 

"There's no way it could have lasted this long."

"Wait, didn't you have that hysterectomy??" (said with disbelief/anger/confusion) "I don't understand why you still are having pain!!"

"Don't you want to have a family, and kids? I had (symptoms X), and I just ate better, and it went away."

Because I certainly DID NOT. 

No way did I choose this. I had lots of things planned. 

Since she said it, it can get very lonely when you are literally too tired and in too much pain to get dressed. 

Or you do, and are in too much pain after to ride/drive in the car. 

Or too tired or the spasms are too intense to even carry on a conversation. 

I can be lonely when you are in a room full of family, and you are in too much pain to speak, and you just manage a half smile. 

"Everybody gets tired; maybe you're just not trying hard enough."

That's not really how it works, but thanks for weighing in. 

Some have a complete wall; a lack of empathy to someone who struggles day to day with sometimes crippling pain. 

It's especially disparaging when it is your Doogie Howser doctor. 

Sigh.

I admit sometimes I let their ignorance linger in the back of my head. The comments of me just being 'lazy', or I can't be in as much pain as I say, and still function.

If  I could just work harder to forget it, and work through it, etc. Many times I can keep the attitude that their experiences, beliefs, faith, family, etc stops them from fully understanding my situation. 

Inside, I am:

Especially, when I'm already having a high pain day.

And here you might be like:

Well, let me tell you. 

If you know and love someone suffering with any of the issues I do, or the myriad of other chronic ailments, education is the key. 

Compassion. Understanding. Offer to help around the house/with the kids/shopping. 

OH, GOD THE SHOPPING. 

Please do all the shopping, and I will pay you. 

Send a text, or pick up the phone for a few minutes. 

Let us know you didn't forget about us. That just because we missed the last two dinners, doesn't mean you love us any less. 

Above all: For me, anyway, all I want is for someone to actually listen. 

Even if you don't have a solution. Even if you cannot fathom how I feel. 

In fact, the most helpful for me is when someone says, 

"I'm really sorry you are having such a bad flare. I'm hear to listen, and hold your hand, if you wish.     

I'm here for you."

Find out about the Spoon Theory

Endometriosis and The #ENDENDOMARCH 2015

I registered for the EndEndoMarch2015 in Washington D.C today, and though it seems like something I cannot physically handle, I am telling myself, indeed, I will be able to when the time comes. I will march for myself, and those that can't. I will march for the children I wasn't able to carry in my womb. I will march for my future children, that they will not see a sick mother, not able to play or take care of them. I will march for the seventeen years of missed or incorrect diagnoses, and missed opportunities. I will march for every woman that has to have a hysterectomy at 28, like I did. 

I will march for my college years cut short; for the teaching job I had to leave. 

I will march for everything endo took from me. 

I will march for my mom, who worked her tail off with Endometriosis growing inside; three jobs, including taking care of three growing girls. 

I have been trying to find the words to explain my frustration with this disease and those that deny how entirely heartbreaking it is. Because of the way I was raised, (by a Vietnam Veteran. A Marine, no less), I have a tendency to hide the pain I feel. I know a lot of chronic pain sufferers do the same. 

Please say that you will just listen. That is all we really need. Let me cry. 

There is struggle with it, that effects the WHOLE body, not just reproductive organs. 

Extremely painful. Yet I have those that doubt me, and my strength. You have no idea. 

It is. If it isn't the cramps, it is body pain. It is the fight to get your physical strength back that the cramps depleted. It is the lack of sleep, trying to function while in a pain fog. It is the pain of losing friends and partners that do not understand or support our diagnosis. 

This was one of my favorite lines from one of my favorite episodes of Buffy. You cannot get stuck in the pain cycle, instead we must find hope and LIVE. Find answers. Find support and reach out when you are feeling alone, scared, frustrated, at your wits end. It is in this way that we will heal ourselves and others.  

Call me selfish, but I am marching for me. For all that I have been through the last sixteen years. 

For the doctors that want to help. I want to find a cure, a cause of this disease. I don't want anyone else dismissed, or made to feel less than. I don't want any other woman to feel the crushing loneliness I did, or still do. I don't want anyone else forced into choosing to conceive or have a total hysterectomy, like either will be the cure. THERE IS NO CURE. 

Please show your support. 

If you cannot make it to the march, consider wearing yellow for your endosister, your friend, mother, sister, or woman you never met. Consider wearing yellow for us. 

More info here : Why We March

More info on EndoMarch

Basic Info on Endometriosis

Thirty-Something Crone

Thirty-Something Crone

 A woman goes through three stages in her life-Maiden, Mother, and Crone. The maiden is the young girl, waxing toward maturity. The mother is obvious, akin to the full moon. Full of love and pregnant with life. The crone, matured and absolved of her motherly duties, and void of the 'moon cycle.' So, what happens when a woman matures to the Mother stage, but her body is unable to give life? She mothers herself. At least, for the time being...

   I bounced seamlessly between girly-girl and tomboy as a child. I would ride my mini quad through puddles in the morning, then play dolls in the afternoon. It never occurred to me that I need to choose. My best friend and neighbor at the time was a very girly-girl. One of our favorite things to do was play house with our Cabbage Patches. Having been the daughter of a Marine, I never was one to half-ass anything. So, in my mind, that meant having a 'wedding' with a boy in the neighborhood first. Come to think of it, I think we are still married...

     After the very short ceremony (we were five years of age, with limited attention spans), best friend and I simulated being pregnant by stuffing pillows up our shirts. No, we had no idea how they got there, if that's what you're wondering. Then, as if by magic, we had a little swaddled bundle of Xavier Roberts joy. If only real life was that easy.

   
     It never occurred to me that I wouldn't be able to have my own children. As I said, I am the proud daughter of a Marine Vet, and as such, a used to be somewhat of a control freak. A planner. I always planned to finish school, attend college, get married and start a family young. But, that was not to be.  Did I not mention I had a total hysterectomy a year and a half ago due to severe Endometriosis at 29yrs old? Yea, there's that. 
     I used to catch myself gently caressing my scarred belly, like I did as a child pretending to be expecting. Why? I detached myself from that part of my body, all dissembled and broken. I caressed it, as if I felt sorry for it, and what it had went through. I regretted having to put my body through such an ordeal. I am sitting here with hot flashes as I write this. Thank you, menopause. 
   No, not everyone that reaches the 'mother' stage will choose to be a mother to a child. I fully support her decision. It's the fact that I always planned that, and until the choice was taken away, I never knew how much I really wanted it. I obsessed over the Celtic view of the three stages for months...What was I? Where did I fit in? I hasten to mention all of my health issues, and refrain from making it THAT blog. But, it's true. I have been dealing with quite a few serious health issues, and barely unable to care for myself at times. Stage IV Endometriosis, Painful Bladder Syndrome, Fibromyalgia, Adhesion Disorder, just to name a few. It was all of these that forced the hyster hand.
     So for now, I'll follow in the footsteps of my heroine, Gloria Steinem, and mother myself. And my two dogs. For me, it's about accepting my body and its limitations. And gifts. As for the triad, I guess I have qualities of all three. For the maiden, I love some cartoons too much, and am still scared of thunderstorms. One of my closest friends is about 17yrs old. The crone in me is very knowledgeable about my health conditions and tries to accept new information, surgeries, etc as they come. She tries to listen to the body and its needs. I started researching adoption, for when the time comes. But, I still cannot go past the baby section of a store without pausing, or attend a baby shower. So don't ask. Just because I was not actively trying to conceive doesn't mean I don't have moments where I completely break down. Did that sound angry? I'm sorry, I'm working on that. 
   I just wonder if I am the only one struggling with my body's limitations and the choices I need to make in order to better my health. I can't be the only one that feels betrayed in some way. The hyster didn't cure the symptoms, by the way. I suppose it didn't hurt, though. I know carrying a child would have made my symptoms worse, and I couldn't stand the heartbreak of finding out that I passed these genes to my daughter. I can't imagine the complications and risks of someone like me.  I know there are many brave women that chose and were able to have a child amidst all sorts of complications and syndromes, but I accept that is not my path. 
 Final thought, I have not let go of the dream of having a child. It just won't be as I always pictured it. All  of the pain, surgeries, scans, and tests have just made me stronger and more self aware. My mom says that not everyone is equipped to handle what I've gone through. She says that not everyone can accept and deal with the difficult process of adoption or uncertainty of fostering. But, that's what the health issues have prepared me for. Difficulty and uncertainty. And then the Crone comes in with acceptance and peace. 
    
 Brightest Blessings, and see you soon...