Friday, April 10, 2015

Throwback Thursday on Friday

I know it's Friday, but after discovering Facebook's new "memories" feature, I'm having a throwback Thursday. Because apparently Thursday is the designated day of the week for reminiscence. I'm poking through ancient Facebook albums, from my University of Calgary days and beyond. 
Care to join me? 

Who is Ross and why are there library books on his project shelf? 


That time my alarm clock told me to have a good day


When I drew Klaus the Nazi goldfish in my German Language textbook...


Patrick and I were toy car shopping at Toys R Us when we found this beaut:


The day I joined the Porn Industry: 


When I went loopy for fruit loops


The worst photo shoot in history...


The day we set up Brad's 80 inch TV


Humiliating Scooter. Again.


When David had to lift the hood of his car and do mechanic things at the worst time


Tuesday, April 7, 2015

This blog is my diary (and I need to vent)

I saw my specialist last Thursday. He said that he was very concerned that I have a blood disease (I can't remember the name exactly) and he ordered a number of blood tests to see what was going on with me. After the dreaded closure time test, I waited a few weeks to see my specialist, all the while avoiding the bottle of Cyklokapron leering at me from inside the pantry. 

The blood tests confirmed that there is nothing abnormal about my blood. So my bleeding is a hormone issue. My specialist said to take 2 500mg tablets of Tranexamic Acid 3 times a day. It's taken a little over a week, but finally finally, my bleeding has stopped. The only downside is that the Cyklokapron (which I call the "Horse Pills" (because they're huge)) makes me very nauseous. 

I've been having a very, very hard time being productive lately. I have been absolutely exhausted these past couple weeks. I have been bleeding so much, and my blood pressure went from being 90 (which is considered abnormally low and the marker for hypotension) to 82. I've been feeling faint, nauseous, sore, light headed, cranky, and poorly. I have a ton of work to get done for my internship with a local magazine, but I'm struggling to concentrate. I'm only comfortable when I'm laying down, and when I'm laying down, I fall asleep. My biggest problem lately has been feeling exhausted. It doesn't matter how long I sleep or nap for, when I wake up, I feel just as exhausted as I did when I went to sleep. I feel like I haven't slept for ages, when all I've been doing is sleeping. What the hell. 

Yesterday I cooked an Easter dinner for my family. When everything was finally served and on the table, this was me: 



Thursday, April 2, 2015

I don't like this hospital.

I see my specialist today, and it's an exciting day because we find out if I have a blood disorder or not. As it turns out, 500mg of Tranexamix Acid won't control my bleeding. So this appointment should be a curious one. 

But I don't really want to go. 

I'm just being a great big baby, to be honest. I just don't like going to see my specialist because he works out of a hospital and it's the same hospital that my grand mother died in when I was 13. Then my beloved papa died there in 2013. And when I'm waiting around for my specialist, there's almost always a "code blue". So I'm just sitting there all glumly and then... someones dies. 


It's no fun. That's why I like having my boyfriend go with me. The support is nice.

Monday, March 30, 2015

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. 


Sunday, March 29, 2015

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

Saturday, March 28, 2015

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.

Friday, March 27, 2015

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.