30 Day invisible illness challenge: Day 30

Day Thirty 

The fact that you're reading this list makes me feel... 

Loved and supported

Thank you so much, to all of you who joined me in the month of March for the 30 Day Invisible Illness Challenge. I am humbled and blessed by your care and support. 

It was hard to do this challenge, harder than I thought it would be. Through the challenge I felt a bit excited, a bit scared, and at times, I couldn't bear to hear myself talk about it anymore. 

I am so happy that I was able to contribute to endometriosis awareness. You too, all of you, you are making a difference, simply by reading this blog. 

Although the challenge is over, my struggle with the disease is not. I use my blog to vent about my daily struggles with the disease. All of you are invited to continue checking my blog at your leisure.

If you missed some posts, or would like to read my challenge from start to finish, you may click the "30 Day Challenge Tag" on the right hand portion of my website. You may also explore the "Endometriosis" or "Surgery" tab for more on life with this incurable disease. 

Once again, thank you so much for your support. It means the world to me. 

I would also like to extend a special thank you to: 

My beloved David. I love you so much and you support me every single day. Thank you for coming to doctors appointments with me, thank you for carrying me to bed, thank you for waiting for me to get out of surgery, thank you for making my hot water bottle. Thank you for loving me. 

You are my person.

Spencer. You're the best brother a girl could ask for. It touched me deeply when you said "If I were a doctor, or a scientist, I would study endometriosis and I would find a cure." That still makes me tear up. You wear yellow every Thursday in support of raising awareness for this disease. I love you, Spence.  

We are so obviously related.

Steph. Thank you. You have proven to be such an amazing friend. Your unwavering support and care makes me feel supported and valued. You even put up with my needle stories, and we both know that's a big deal.  You invite me into your home, make me feel comfortable, and I'm always happy to return the favor. I have really grown a love for you, Steph. I'm thankful for our friendship.

Brad. We don't ever talk about my disease, and I like that. But you and I chat about surgery sometimes and it' nice to have someone that I can relate to. Plus, you call my hilarious and that makes me feel good. Then you share the story about me running into a glass door and make every one laugh and it makes me blush.  

My Mother and Father. Both of you are supportive and loving and for that I cannot say thank you enough. I love you both. 

Bruce. You care, and I can tell. You've been supportive and for that I cannot thank you enough. You didn't need to be supportive, you didn't have to listen, and you sure as hell didn't have to read my blog. Thank you for caring about me and reading through this challenge.

Shaun. Your simple "I love you Danie" comment made me instantly cheer up. You're like a brother to me, and you were the best coworker. I miss you lots,  Aussie boy. 

You're the best, Shaunathan!

Dominique. Thank you for reaching out to me on facebook even though I neglected you for over  a year. I really do love and miss you. I'm jealous of your talent on horseback and I can't wait to ride with you again. 

I love you even after you tried biting my horse's ear off LOL

Rachel. You also reached out to me, despite my neglecting you. I've been missing my gorgeous girlfriend since you moved to the east coast. 

You're amazing!

Doc. You're not reading this, but thank you for all you've done for me. Thanks for being a complete goof. Thanks for saying dumb crap that makes me laugh, like that time you patted me on the shoulder and said: "I'm your drug man." Thank you for squeezing my foot before surgery and saying you would take good care of me. Thanks for holding my hand until the anesthetic took over. Oh, and thank you for assuring me that I'm not crazy. Still laughing that you prescribed sedatives on the down-low. I missed a shift at work because of that, by the way. You're the best, doc.

Clancey

Thank you for protecting and guarding me when I'm sore. You always know when I'm not feeling well. I love you, Clancey. You're the best friend a girl could ask for.

Scooter 

You knew I was sick long before even I know it. Thank you for being so gentle and protective. You really truly are the love of my life. I love you, Scootie. 

30 Day invisible illness challenge: Day 29

Day Twenty Nine: 

I'm involved with Endometriosis Awareness Month because... 

At the very least, we need understanding

Endometriosis isn't taken very seriously by  many. I asked my surgeon why that is, and she explained that it's because there is very little known about the disease. 

Did you know... 

The prevalence of endometriosis in women with infertility is as high as 30–50%1

Some women have extensive endometriosis and experience very little pain. The disease may be discovered when said woman isn't able to conceive and is looking for answers. Some women have very little endometriosis and they're in incredible pain. It's a very odd disease. 

Did you know... 

On average it takes 7.5 years from onset of symptoms to get a diagnosis 1

Nobody knows what causes endometriosis. There are theories and guesses as to how the disease comes about, but no one knows for sure. I personally think that endometriosis is an autoimmune disease, and lately, research has been pointing in that direction too. If it is indeed an autoimmune problem, it means the body is attacking itself, almost like a cancer. 

 Did you know...

 Annual healthcare costs of endometriosis are estimated to be $70-110 billion in the U.S. alone 2

Indeed, endometriosis is similar to cancer in many ways. Luckily, endometriosis is very rarely fatal. Unfortunately, women with endometriosis have a significantly increased risk of developing ovarian cancer. 

So I am involved in Endometriosis Awareness Month so we can get the word out there. I want doctors to know, so we can be treated properly. I don't want other women to be faced with why don't you just get pregnant now? or organ removal as possible treatments. Um, hello, do you see a ring on my finger? That's why I'm not having babies now. And, uh, organ removal?!?!?!? HELLO!? 

It's time to end the silence. Let's all get over ourselves and make it ok to talk about female reproductive problems.  

#EndoThePain

30 Day invisible illness challenge: Day 28

Day Twenty Eight: 

The nicest thing someone did for me when I wasn't feeling well is... 

David gave me a stuffed Koala Bear.

 I have been a very lucky girl, and I have been spoiled. Endometriosis is gloomy and lonely, so it's nice when my loved ones show their support. I'm blessed with their patience, words of encouragement, and, occasionally, gifts. One thing that people do that I love is send flowers. I love flowers. They are so bright and beautiful, and they bring joy. You feel loved when you receive flowers. 

Just recently, after my appointment with my surgeon, I became depressed. She suggested having children now, and the whole appointment acknowledged and confirmed that I was quite sick and surgery is necessary for both feeling better and having children. It was a rough appointment, and the next day I spent with the lights off in the house, the curtains closed, and I just wanted to sleep. I felt awful. I called my mother for support, then called my dear friend Steph. I bawled my eyes out on the phone with her. I cried and I cried and she listened and spoke. She offered fantastic advice, and I felt a bit better after our talk, but I didn't feel cheery. You may imagine my surprise, then, while I was making dinner and heard a knock at the door. A lady stood on my doorstep, but I couldn't see her behind this giant bouquet of beautiful flowers. They were a gift from Steph (and of course from Brad too). These beautiful, joyful flowers were so cheery. I suddenly became excited about the dinner I was cooking, I pulled open the curtains, and felt better. Don't underestimate the healing power of flowers!

The bouquet from Steph & Brad

The bouquet brought a lot of joy and cheer into our home!

#FlowerPower

I was very fortunate in my previous job at Pet Land. I had such wonderful, supportive staff. All my coworkers were so supportive and kind. Before my surgery in August 2013, Niina and the other girls at work pitched in and bought me a beautiful bouquet of pink roses. Even after surgery, if I was having a pain day, my dear Shaun was always so nice and he always said to me, "Danie, go home. You're not feeling well, let's see if we can get you home." Though I worked with puppies, so Shaun was rarely able to convince me to go home!

My old job had some serious perks!

I didn't choose the scrub life. The scrub life chose me. Just kidding. I chose the scrub life. And it's awesome.

After my first surgery in October 2011, my then-boyfriend flew from Ontario to Calgary to visit me two days after my surgery. I had to stay overnight at the hospital after that surgery, and I was very drugged and out of it for his visit. While I was sleeping upstairs, he and my father watched hockey downstairs. Even though I didn't have immediate company, I felt so much love and support. It really helps in the healing. 

My mother brought me roses and chocolates post op, which was very sweet. It's nice to feel doted on every once and a while. Everyone wants to take care of you after you've had surgery. You can get away with just about anything. And eat whatever you want. Ginger ale, soda crackers, and ice cream are post surgery staples. It's kind of awesome.

I come out of surgery and I'm like:

 More than anything, my Davey Boy knows how to make me feel loved and doted on.

For my surgery in 2013, my beloved David woke me up at 4 in the morning. He made sure my hospital bag was packed with the essentials: jammies, clean undies, and a stuffed bunny. But then he revealed something special to me: the cutest stuffed Koala Bear. I love that thing. I still have it. I have a thing for stuffed animals, and koalas are one of my most favorite critters. The koala was a perfect present and it accompanied me to the hospital. Thank you, David. 

ITS SO CUTE AND FLUFFY OMG.

Obviously I'll get well soon with this cute thing hanging around.

While the gifts are all so nice and sweet and unforgettable, the nicest thing is the way David treats me every damn day. He always listens to how I'm feeling, he always asks, and he always knows when I'm hurting. Some days he carries me to bed, he always helps me to my feet, and he sometimes makes my hot water bottle for me. David is amazing. He makes this disease bearable.

30 Day invisible illness challenge: Day 27

Day Twenty Seven

What's it like having a pelvic laparoscopy? 

Surgery is scary

I modified today's question, because surgery is almost inevitable if you have endometriosis. Hell, you can't even get diagnosed with the disease until you go under the knife. Nowadays, endometriosis can be treated with a pelvic laparoscopy. Laparoscopy refers to the use of a laparoscope to perform the procedure. This is leaps and bounds from the old use of a pelvic laparoptomy, where the patient receives a large incision, or "open surgery". Pelvic laparoscopies are "minimally invasive" the surgery is performed with usually two to four tiny "keyhole" incisions.

Still, surgery is surgery and there are many risks involved in pelvic laps. In a pelvic lap, you're put under general anesthetic, which has its own associated risks. To me, surgery is terrifying, and I am so thankful for minimally invasive surgery. I have had two pelvic laps, and I found them to be very painful. After my second surgery, I awoke in the recovery room in so much pain. I remember there was a sassy nurse that told me I was maxed out on morphine, but I was still so sore. I was pleased to have lost consciousness. The pain killers I take on a daily basis (like T4s and Tramadol) are "heavier duty" than the ones I was given in the hospital (I was given T3's which have half the amount of codeine than T4's) so in-hospital recovery from surgery #2 was paaaiiiiiiinfulllll. I couldn't imagine the pain following open surgery. 

A pelvic laparoscopy. No fun, but better than a laparoptomy.

I want to share with you guys what it was like to have surgery for endometriosis. It's kind of exciting, in a horrifying potentially life threatening kind of way. 

Before surgery, you have to fill out some forms. Mostly consent forms. Surgery, even the minimally invasive ones, have risks. Pelvic laparoscopies have a mortality of about 0.05%, according to surgery.com. Those are some good numbers. Though hemorrhaging is always a big risk in surgery. 

Before you go in for an op, your surgeon explains all the risks. They also talk about recovery, and what to expect. In all honesty, I get a bit overwhelmed at this point. In August 2013, my boyfriend took me to the Foothills Hospital for my 2nd surgery. I was in a ridiculous hospital gown and I met with my specialist (who was performing the surgery) pre-op. He put a hand to my knee, and we went over the procedure. Again, so scary, and so overwhelming.  

Surgeons always ask if you have any questions, and this is me, every time: 

As I said before, surgery is scary to me, and there are a lot of things that make me nervous. First and foremost, my biggest fear about surgery is "anesthesia awareness". What is this? Let the mayoclinic explain. 

Estimates vary, but about 1 or 2 people in every 1,000 may wake up briefly while receiving general anesthesia. The person usually doesn't feel pain, but is aware of his or her surroundings.
In very rare situations, some people experience excruciating pain in spite of general anesthesia. In this situation, because of muscle relaxants given prior to surgery, people aren't able to move or speak or make others aware of their distress. Some people may develop long-term psychological problems, similar to post-traumatic stress disorder.

This is terrifying to me, and it was on my mind before both surgeries. It's on my mind now, and I don't even have my next surgery booked yet. To me, this is more terrifying than not waking up at all. 

So surgery. What's it like? 

When you're admitted to the hospital, you have to do a blood and urine test. They're testing for pregnancy, etc. You can't eat or drink for about 12 hours prior to the procedure, so you're hungry and thirsty, and it's hard to provide a urine sample at that point.Then they put a stack of fancy hospital bracelets on your wrist, and you're taken to day surgery. Then you get even fancier when you put on the backless hospital gown. 

so fancy.

You're put into a bed, then a porter takes you to pre op. I got lucky and had a flaming gay porter take me to pre op for my first surgery. He was awesome, and we chatted flamboyantly about hospital stuff or whatever.

For my first op, the experience was a bit terrifying. Pre Op was a dismal room with sick patients laying beds waiting for their surgery. Everybody is terrified. You answer so many questions in this room. All the staff asks you the same question repeatedly: what are you having surgery for. And it's not because they're clueless-- even the surgeon asks you this. It's to make sure you're in for the right op, and to make sure you know what's going on. 

The operating room is the worst part. Operating "theaters" are extremely cold. It's like being in a meat locker (ok, not a meat locker, but it's so cold in operating rooms). There's always a lot of staff in there too. For my first surgery, I had to get out of the hospital bed and get on this super narrow stainless steel table. Above you are these huge lights, and all around you is strange and unfamiliar equipment. 

For my first surgery in 2011, the surgery prep was done by this wonderful granny nurse. She was old and so kind. She made me feel a bit less nervous. She put electrodes on my chest then she put an IV line in my wrist, and then the surgeons and doctors started coming in and milling about. I find operating rooms to be terribly scary. The metal table was cold, I had needles in my arms and electrodes on my bare skin. And then the granny nurse (bless her heart) put an oxygen mask on my face. She explained that it was just oxygen and I should relax. I cry before I go under. Both times, and even during my ear surgery as a child. Going under is scary and I dislike it. You're in a big, cold, scary room with beeping machines and doctors in masks are milling about. Then, a mask is on your face. The anesthesiologist injects a drug in your IV line, and for a moment, a very brief moment, you feel yourself slipping away.

After surgery #1 I awoke in the recovery room like a wild animal.  I awoke to a nurse trying to put disposable underwear on me. I kicked fiercely, trying to kick her. She got angry (I suppose I can see why) and said she just wanted to get some underwear on me. I passed out. I'm always in and out of consciousness in the recovery room, and never remember getting to day surgery. I pass in and out of consciousness there, until family arrives. After my second surgery, I awoke in the recovery room with a number of doctors looking down on me. The intern that had screwed up my IV line pre op was there, and doctors were saying "Danielle, we need you to breathe." I was confused. "Danielle, we need some big deep breaths from you." My legs were wrapped in these odd devices that squeezed and released, like blood pressure cuffs. I think they're used to prevent clotting in your legs post surgery. Again, "Danielle, breathe. She's not breathing." I remember thinking what are you talking about? I'm fine. I fell out of consciousness and awoke later to the recovery room staff talking about the Honey Badger youtube video. They were laughing and it felt like a dream. I saw one of my customers from the pet shop, who I had helped just the night before! He was part of the recovery room staff. We smiled at each other and he asked how I was feeling. He called me the Pet Store Girl (the name stuck, by the way).  

Waking up in the recovery room and seeing doctors surrounding you, fussing over you, telling you to breathe...

I remember feeling just awful after my first surgery. I had been in surgery for a little over 4 hours. It was a long operation. The tennis ball sized endometrioma I had in my left ovary had ruptured during surgery, so it took a lot of suction to clean the blood out of my pelvis. The surgeon didn't touch the endometriosis in my pelvis (which she described as being extensive) and I've been told that her not doing anything to treat my endo while I was in surgery is medical negligence.

When I come out of surgery, I drift in and out of consciousness for a couple hours. Then I wake up in day surgery, and it's time to investigate the damage. It's like inspecting yourself after a horrible accident. You take inventory of yourself and assess the damage. After both surgeries I had a tender, bloated tummy. In surgery they inflate your abdomen with Carbon Dioxide. The inflation makes room for the surgical tools and gives the surgeon a good look at your insides. After both operations my tummy was not only bloated, but bleeding. The incisions bled through the steri strips, gauze, and hospital gown. Not a pretty sight, considering the iodine stains your tummy yellow and there's usually bruising around the incisions.

After op #1, I vomited when I tried sitting up in bed. I was on constant heavy pain killers and I grew faint and sore when I was sitting up or on my feet. My father took me for a "shuffle" around day surgery. I leaned heavily on my IV line and I was pale and green in the face after a round. I had to stay overnight after that surgery. And let me tell you, overnight stays in hospitals suck. I had a grouchy nurse that night, and I was waking up every hour or so. Op #2 wasn't so bad, and I was anxious to leave the hospital as soon as possible. 

I discovered that I get a sore throat after surgery, and it's actually very common post op. When you're under general anesthesia, they insert a tube down your throat. The tube is called an endotracheal tube and it's necessary for the patient's breathing during surgery. They insert the tube before surgery, when you're deeply sedated. 

It's a really flattering look.

One thing that I learned that's kind of freaky cool is that your eyes are taped during surgery. My eyes were taped shut!? Why is that? It's to protect your eyes from drying out, and to protect them from any damage. Even in the case of a pelvic lap, there's a lot going on around your face. When you're in surgery, you're given some serious muscle relaxants. When you're paralyzed like that, you won't blink and your eyes will fall open. 

I feel you, bruh.

Surgery is weird. Right before you go under, you're suddenly so aware of how vulnerable you are. You look at your anesthesiologist and think oh christ my life is literally in your hands. Don't fuck up. You know that you're naked and vulnerable on a little table, tubes in your throat, eyes taped shut, and your vitals on a beeping screen. It's..... scary, to say the least.

My Stupid Surgery Album 

My bloody incisions are healing a couple days post surgery, 2011.

Post-op in 2013. I was really high on morphine. Like, blitzed.

Yeah, my boyfriend gave me a hickey right before surgery. The doctors found that a bit funny.

I had only 3 incisions for my 2013 op. I had 4 for my first.

My bloated, bruised, and tender tummy post op 2013. The X shaped scar is still very visible.

For some reason, I got a lot of bruising around my incisions in 2013.

Now, I have 7 surgical scars on my tummy. I'll be having a third operation soon, but the surgeon mentioned reusing old entry sites, so hopefully I won't get any new scars. Surgery is very scary, but it's worth it. 

The operating room, named “Theater 612”, is cold. I lie on the narrow bed, staring up at the large, bright lights meant to illuminate me; the patient. The only sounds I am aware of, in my state of fear, is the air-conditioning and my own pounding heart. I feel a lump rise in my throat as a nurse comes to my side and takes my blood pressure. It is so cold in this room. I am self-conscious because my breasts are pointy beneath this thin hospital gown and my hair is standing on end.  I can’t bring myself to further explore this room with my eyes. I stare at the enormous lights, far too bright, and focused on calming my pounding heart. Another nurse, an older woman, is by my side and warns me that “this will be a bit cold.” I don’t watch as electrodes are placed on my chest. I’m sure she can feel my heart pounding wildly. How can she not? I’m sure all my arteries will burst, my heart is beating so hard.

The electrodes are secure on my chest, and a young man is at my side and tells me he’s here to insert my IV. I watch as a long, thin needle is pushed onto the top of my hand. The pressure is painful and I roll my eyes to the side in an attempt to avoid tears leaking from my eyes. He withdraws the needle, and slips it instead into my wrist. This is more comfortable, and I am calm as he tapes the tubes to my arm. My surgeon stands at the foot of the steel bed, a tired smile passes over his face. He puts his hand on my cold foot, gives it a squeeze, and asks if I’m ready.

“Take good care of me” I say, my chin trembling pathetically. He smiles under his gruff grey mustache. I notice the deep lines in his weathered face and I try to relax.

“Of course” he says, and then the anesthesiologist puts a mask over my face.

“Breathe deeply” she says, and tears leak from my eyes. My surgeon is now holding my hand, and I give it a squeeze. Deep breath in, concentrated oxygen, and now I’m light headed. I squeeze his hand, I think of my boyfriend, of riding my horse, I think this will be over soon. My head is light. I’m dizzy. I’m floating.

30 Day invisible illness challenge: Day 26

Day Twenty Six 

When someone is diagnosed I like to tell them... 

Well good luck. 

In all seriousness, I haven't been around for anyone's diagnosis with endometriosis. However, when I was working as a supervisor for a pet store, I remember this one day this girl walked into the store. She had a walker, and there was just something about her that I recognized. I had no clue who she was, but I knew she had endometriosis. Do you ever get those funny feelings? You have that 6th sense and you can just feel something? Well I talked to the girl, and perhaps I was a bit rude because I asked her what her health problem was. When she said "it's a pelvic problem called endometriosis" I wanted to cry, and told her that I had it too and I had an odd feeling that she had it as well. There's something about endometriosis, perhaps it's the constant, lingering pain, or perhaps it's what it does to a woman's confidence, whatever it may be, I saw it in her and we bonded over our illness.

If you're reading this and you suspect that you may have endometriosis, or you've just been diagnosed with endometriosis, I offer you my sympathy, but also some hope. Endometriosis is an odd disease, and it's different for every woman. Some women have a miserable time with it, and can't get their pain under control. Some women, however, aren't effected by it much and find it to be a minor nuisance in their life. If you're diagnosed, it's not the end of the world. It poses some challenges and some problems, but it won't kill you (though some times it may feel that way). My advice would be to build a strong support group, and keep yourself healthy. Love your body, even though you may feel like it's torturing you.

30 Day invisible illness challenge: Day 25

Day Twenty Five: 

My favorite motto, scripture, or quote that gets me through tough times is... 

Well I can't pick just one...

I have a board on my pinterest specifically for endometriosis. It's filled with quotes, sayings, and snarky comments that help me through the loneliness of a chronic illness. 

My favorite is probably this one: 

Tramadol is my painkiller of choice and I have a deep rooted love for ice cream.

Then there's this one: 

And this one really cracks me up 

(I feel like this often, primarily during physical exams) 

Lately there's been research done to determine if endometriosis is an autoimmune disease. I certainly think it is, so I find this image to be rather funny: 

Funny images aside, my favorite quote (or poem, rather) is from a movie called The Grey, starring the lovely Liam Neeson. The poem goes: 

Once more into the fray

into the last good fight I'll ever know

live and die on this day

live and die on this day

I cannot properly express why I love this poem so much. It makes me think of war, of bravery, of love, and of acceptance. For some reason that I cannot understand, this poem is beautiful and touching and I love it. It was on my mind before surgery, and it gives me the strength to pull myself together and soldier on.

Last, but not least, are Freddy Newandyke's words in my favorite movie Reservoir Dogs. 

"Don't pussy out on me now. They don't know. They don't know shit. You're not gonna get hurt. You're fucking Barretta. They believe every fucking word 'cause you're super cool." 

This, my friends, is what keeps me going.  

Backwards Latin

Yesterday my boyfriend took me to meet my new surgeon. 

I used to be relieved when a doctor would acknowledge that there was something wrong with my body. It was a kind of relief, this sensation of oh thank god, I knew I wasn't crazy! Yesterday after my appointment, I stood in a hot shower crying, wishing that everything was actually in my head. 

The appointment wasn't necessarily bad, but it was a jarring reminder that I am not healthy and there is something quite wrong. My blood pressure came back abnormally low. While a healthy blood pressure is above 110, mine was at 90. The culprit? Blood loss. I've been slowly bleeding out for months.

The surgeon was nice, she's this petite smart little Asian lady. She seems smart, and we discussed surgery. I thought that I could like her, but then she said she wanted to do a physical. I HATE PHYSICALS. 

Me when the surgeon said she wanted to do a physical exam:

(I wish I could have actually vanished in a cloud of smoke)

She performed a painful physical (when I say painful, I mean my body turned ice cold and I sweat so much the paper covering the examination table soaked through). She said she could feel what she thinks is endometriosis. This is odd, I've never heard of a physician being able to actually feel endometriosis in a physical exam before, but hey, whatever. 

We discussed surgery. She said, "surgery is definitely on the table, it's just a matter of when we do it." She doesn't want me to have numerous operations, which is fair. Surgery comes with so many risks. But I'm just sick and tired of being sick and tired. She said that while she would prefer to perform my operation right before we're ready to start trying for children, we'll make out decision after the results from my colonoscopy are reviewed... which will be after September or October.

Then she suggested I have babies now. 
I am embarrassed to admit that I had a full blown panic attack (complete with hyperventilation) in the car on the way home. Babies? Now? ....no. I'm not ready. 

I fear this is how I will be as a mother:

It was such a stressful appointment, I've been feeling pretty bummed out since. I can't seem to pull myself together. I've been feeling tired, achy, and mopey today. I need to pull myself out of this. I'm surrounded by so much love and support that I don't have much reason to be feeling a bit sorry for myself. I'm trying to cheer up. 

BUT BABIES. NO. NOT NOW. Terror runs through my body like an icy cold electric jolt when I imagine myself embarking on motherhood within the next couple years.  

When the surgeon suggested having children now, my mind turned to mush and I was like:

At this point, I realized, I think that perhaps an exorcism may be a viable treatment option for endometriosis. I'm not even kidding. Why not give it a whirl? An exorcism. Sure. Let's give it a shot. Surly it can't be worse than Leuprolide! 

30 Day invisible illness challenge: day 24

Day Twenty Four

...But I love it when:

You ask me how I'm feeling 

(and actually care about the answer) 

Far too often I lie when somebody asks how I'm feeling. I say that I'm good or ok when really I may be feeling really crappy or down. It's nice when a friend asks how I'm feeling and genuinely cares about the honest answer. Oddly enough, being able to talk about feeling a bit sore or bummed out makes me feel a bit better. When someone actually cares to hear about how I'm feeling, it feels like I don't have as much of a burden to carry. Telling you how I'm really feeling makes me feel less lonely and a bit lighter. So thank you, to those who ask and care.

30 Day invisible illness challenge: day 23

Day Twenty Three: 

Want to know a secret? One thing people say that gets under my skin is: 

"It's in your head"

This is a tough question. There are a number of things that people say that drive me absolutely crackers. Some of the big ones include: 

1. My aunt's cousin's sister's friend had endometriosis and she's cured after trying this homeopathic herbal tea. 
2. Endometriosis isn't a big deal and it's easy to treat. 
3. Just get a hysterectomy. 
4. You just need to get more exercise. 
5.  You should try this doctor 

I understand that most of these suggestions aren't malicious and they're said because the person genuinely cares about me and wants me to feel better. But here's the thing: 

1. Good for your aunt's cousin's sister's friend.Wow. Amazing. She should write a book. Because there's no actual cure for endometriosis. 
2. Saying that endometriosis is no big deal and is easy to treat is a backhand slap across the face. It is a big deal because it's negatively impacted my life and I've been suffering for over 9 years. And it's not easy to treat- I've been on nearly every treatment, including a cancer treatment, and none have worked. 
3. I want to have children. And a hysterectomy isn't a guaranteed cure for the disease- it can still come back, even after the uterus and ovaries have been removed. 
4. Whenever I try to get exercise I'm reduced to a ball of tears and agony. Yoga literally provokes bleeding in my digestive tract-- I'm awaiting a colonoscopy thanks to a failed attempt at getting my abs back.
5. I hate switching doctors. I've been through so many, and in Canada, you get put on an enormous wait list and it takes months, even years, to see a specialist. I've swapped doctors so many times, I've had my files and referrals lost so many times.... unless this new doctor is Jesus himself I'm not interested in waiting over 6 months to see him.

But the biggest one, the holy grail of all the unsolicited opinion that I have received, is: 

It's in your head / it's a mental projection / an attitude change will heal you

I have, on so many occasions, truly believed that this disease is indeed in my head and I am actually making this whole thing up. I've bawled my eyes out in front of my specialist, crying about how I'm crazy and I've imagined this pain and it's ruining my life (he prescribed sedatives after that visit, actually. FML).

But here's the thing. 

When you tell a sick person (whether it be cancer, endometriosis, lupus, whatever) that if they change their attitude or that their pain is in their head, you are severely hurting them. And here's why: you're putting the blame on that person. 

You would never tell a person with a broken leg that by changing their attitude they will heal themselves. That's ludicrous! Yes, a positive attitude helps lift one's spirits, but it won't heal their broken leg. It's no different with an invisible illness. When you say that an attitude change will heal my disease, you are inherently saying that my current mental state is causing my suffering. This is an enormous burden. I'm already suffering with pain on a daily basis, and I miss feeling healthy and active. I am optimistic about my future, but I am also realistic about it. I know that I have an aggressive case of endometriosis. It has already grown back and spread with a vengeance after being removed in surgery. 

When you have a broken leg, you see a doctor and get a cast and you heal. When you have endometriosis, you see a doctor, have surgery, and in a year the disease comes back. 

That's the reality of it.

Yes, I believe that diet changes, physical activity, and positive thinking and emotional wellbeing contribute to a happy and healthy life. It does positively impact your body and helps you heal. However, positive thinking and a healthy outlook won't cure the disease. 

After a close loved one suggested to me that an attitude change would cure my illness, I made an appointment with my specialist. I was particularly disgruntled, as I had taken this advice to heart and I became convinced that it was my fault that I was ill. My doctor, this gruff, grey, mustached fellow, listened to what I had to say and dryly he replied "well kid, that's a tall order to fill." He explained to me that for an unknown reason, endometrial tissue was displaced in my pelvis. I experience severe inflammation, internal bleeding, and the binding of internal organs. A co-morbid condition causes tight muscles and constantly firing nerves. This is why I'm in pain. Yes, he agreed, that stress can worsen pain, so stress reduction and emotional health are important in pain management. What I can't do, unfortunately, is heal myself with a jolly attitude and a pleasant outlook on life.

I understand that I'm not doing anyone any good when I'm in one of these moods:

When my aches and pains have aches and pains, this is me.

It really gets to me when it's suggested that my pain is something that I'm imagining. I seriously wish to use a baseball bat to smack this person around a bit and then boldly and ignorantly inform them that the pain they're feeling is in their head. But, apparently, causing bodily harm to another individual is illegal, so I can't really do that...

I actually had a doctor tell me that my pain was made up. He was very old, and very arrogant, and he told me that my pain was a mental projection. He said that at 18, I was too young to have any gynecological problems. I actually believed this for a while, and I was convinced that I was crazy.

Then I was diagnosed with this.