life post surgery. it's pretty fricking sweet. but also a little bittersweet.

So surgery was about a week ago. well, not quite. It was Monday at 3:45pm, and now it's Friday evening.

Going under anaesthetic pre surgery is one of the most brilliant feelings. Often the preceding hours/days/months are filled with some amount of fear and anxiety, but when you get asked to start counting back from 10, and you only remember barely reaching 8, and then it's all gone: the pain, the fear, the stress, the depression, the anxiety about what could go wrong. It's blissful. I don't really know how else to describe it. You're left there, lying on a very stiff table, covered by warming blankets, and surrounded by nurses and doctors who are smiling at you, and even, sometimes, holding your hand until you drift off.

The experience of this surgery was like night and day compared to the last one that I had to help with my endometriosis. Maybe because I'm actually a full fledged nurse now. Or maybe because I was so much more honest about my fears with my nurses and doctors. And more likely than anything it was because I finally found a doctor who listened to me, and felt WITH me. I think I'll remember her exact words during our first appointment exactly. She trusted me. She knew my body. She believed me. And she wasn't going to let me continue to live the half life that I had been living for months. When I started to cry during the appointment, her Resident looked surprise, but even before I could catch my breath to explain, she told her that the tears were not of sadness, or because something had gone wrong, but tears of relief. Tears of being listened to. Taken seriously. Understood when I explained that at the moment I was barely living. She just knew. She got me.

So now it's 4 days later. Strangely enough, waking up from surgery with that pain was easier than the pain I experienced for months prior. Seems crazy. To have the pain of having your body cut into in 4 different places be less than the pain of your illness. But it was. And I worked so hard to stay awake right away after surgery because I was afraid that if I let myself sleep again right away that pain relief would all go away. I talked to my doctor. I talked to my nurse. I talked to myself or anyone around just to stay awake. But it wasn't hard.

Everything felt easy after meeting my doctor post op. She smiled this huge, beautiful smile at me, and explained that they were able to remove all of my "bad" tissue for now. It came out cleanly. I would likely have pain relief for a few years, at least, And my "baby makers" were clean. Totally. Completely. Beautiful Organs. I even got to see pictures. Like I said, she just got me, and knew what was important to me, and what scared me most.

So I'm getting back to "energizer bunny" status as my family calls it. I just call it getting back to me. I love the things I do again, I feel inspired to cook, craft, jog, hike, etc etc. I don't really know how to accurately describe that feeling of relief you get from all of a sudden being pain free. I feel like my life just renewed itself.


So I know I should be staying positive. And 98% of the time I am. But the rest of me know that endo can and likely will regrow, if not in the same place as before, it will find somewhere else to call home. But I don't care.

I love every moment of every day I have right now that is free from pain and constant stress about what might be happening inside my body that I don't see or really understand.

But until then, I'll raise a glass ( preferably of some really fricking awesome champagne) to my family, my friends, my doctors, my nurses, and selfishly, myself. I got through this one. This second surgery in what might be a lifetime of minor surgeries. But this is done, for now. And I'm relaxed, and happy.

Love to you all.

radio silence period over. real periods only here.

So it's been a while since I last wrote anything. Over 2 months actually. There are a lot of reasons for this, but really it's been such a difficult summer, mentally and physically, and I really didn't know how to talk about it. Even writing this now I feel the tears welling up in my eyes. It's not all bad though. There is some happiness in those tears. Anger too. Frustration. Exhaustion, both mentally and physically. But today,  I want to focus on the happy.

Surgery! It might seem like a silly thing to be happy about, but believe me, I am. I actually cried from relief when my new endo specialist told me that she was going to operate, and that it would be soon. I had this appointment on September 5th, and my surgery is September 26th. Like my doctor said, soon! There was a resident working with her when I had my appointment, and she is fairly new in that department, so we talked a lot. It was great. I think I scared her a little when I began to cry, but my doctor just laughed happily and looked at her resident and said "She's not crying because I said or did something wrong, she is crying from relief". It was perfectly explained. And so wonderful to have a medical professional get it. So, happy happy over here.

Scared maybe a little too. It's an easy surgery. I'll be done in less than an hour. Can go home a few hours later. Recovery in less than 10 days. Laparoscopic surgery is great. I'll have 4-5 small incisions ( adding to the ones I had last time, i'll be at a count of 8 small ( 1 inch) scars on my abdomen.) Scars are an interesting thing. I used to hate mine, both from my first endo surgery and from my back surgery. I felt they represented weakness. Failure on the part of my body. I realized recently that they represent strength, experience, suffering and powering through. I wear them proudly now. Just as I feel I am learning how to wear this disease. With happiness? definitely not. But pride is there. Writing this blog and talking about it more openly has been huge for me.

Just a warning that this part might get a little graphic and detailed for those that are not medical professionals. Endo is a lot of things. There are studies to suggest that the 4 stages of endometriosis and their varying effects on your life and overall health can be directly compared to the 4 stages of cancer. I'm at stage 2.
I take about 30 pills everyday. Not all of them are prescription, but some are. Of the ones that are prescription drugs, all have the same 2 annoying side effects. Weight gain and acne. Well great. As if I wasn't already feeling self conscious in different ways about my body, the 2 most visible things are negatively impacted as well. Thanks. I also have to do weekly b12 injections. Those, coupled with my 2xday iron pills, and drinking lots of water and eating healthy, ensure that I stay relatively healthy and stable despite my daily blood loss.

That's the other recent fun thing. I have been bleeding continuously since August 20th. And with endo, any external bleeding means there is some internal bleeding as well, which is what the spread of endo is. Also great. I mean, who doesn't love month long periods? Oh and the crazy hormones are fun too.

Moving past what is currently happening, I'm trying to look ahead and focus on the surgery. Like I said earlier, it's laparoscopic surgery, so just a few small incisions. Basically they will go in and cut out any damaged or "bad" tissue that they can, and on areas like my bladder, bowel and ovaries, they will burn and scrape off as much as they can. In the areas they can cut out, the chance of regrowth is about 10%. In the areas they burn off it is about 70%, and then of course there is the likelihood of growth on any other reproductive organs, as well as further spread into my abdominal organs. But the last time I had this surgery I had just over 2 years of relief. And right now, the thought of even one day of relief is amazing, I can't even say how much 2 years of relief would mean.

So yes, emotions are mixed, and running rampant. Like I said, hormones are fun. I can't tell you how many times I have cried at stupid things on the internet or in movies lately. And I'm really not a movie crier. Ever.

But today I choose to focus on the happy. I've even started making plans of activities, parties, travel! for after surgery. I almost feel as if life begins again in a couple of weeks. And I couldn't be more ready.

the sun always rises again the next day, no matter how dark the night gets

Standing on my patio last night watching the sun setting gave me a flurry of emotions. I could go into details of the sentimental thoughts that crossed my mind, the ones that brought tears to my eyes- both of happiness and sadness- but instead I want to focus on the sense of balance that watching the sun go down and fade into darkness gave me.

I haven't written anything on this blog for a while. Things got a little dark for me I suppose. Flare up doesn't even begin to describe some of the intense symptoms of pain and fatigue I have been feeling. The inability to get the energy up to even leave my bed for more than 15 or 20 minutes at a time, for a maximum of about 3 times a day. Total social seclusion for days on end. The only tie to other people being the constant stream of posts and updates that come in through facebook, instagram and snapchat. Say what you will, but honestly, thank god for snapchat. anyways, that was a bit of a tangent. back to the sunset.

Standing there, watching the sun go down and fade into the darkness really made me feel like I have been sitting on that side of a days rotation for weeks, months. And yes, sunsets are beautiful. Sunsets can be extremely happy times. I'm not one to turn down the chance to sit somewhere lovely, watching the sun go down, surrounded by people I love, potentially with a glass of wine in hand. It's the thing that comes after the sun finally does set that is important here. The darkness. You could almost call in the absence of life. You don't hear birds chirping, kids playing, or just the standard background bustle of people moving about. That is really where my head and my body have been at lately. And it's actually fairly easy to settle into the darkness, despite what many may think. And being a nurse who is used to shift work, it's easy to keep the darkness all day long. Just pull the blackout blind down to shut out the light and the rest of the world.

I know this all sounds rather dreary and sad. At times it was, for sure. No denying that. But I think I really believe in darkness as a healthy part of healing and recovery. I'd fallen into a pit of hopelessness for my symptoms improving. A pit of hopelessness for my life ever being something more than just month after month of medication changes, blood tests ( I actually had a lab tech tell me I broke her record for most vials drawn in one visit. Can you feel my joy?) and visits to various doctors offices, with many uncomfortable tests to be done. And hopelessness is kind of easy too, you know? It sounds hard, and it's definitely not all sunshine, lollipops and rainbows, but it comes easily. Fighting is the hard part.

So, once again, standing on my patio last night, watching the sun go down, I started to think about the sun rising again, instead of just the darkness that rests in between. ( Unless of course you're lucky enough to get to experience the midnight sun of northern places). But really. The world has this funny way of rotating and moving and changing, and in the end, the sun always rises again the next day. So I'm going to focus on that for a while. I'm going to choose to fight for the possibilities. I'm going to choose to believe my doctor when she gave me a hug yesterday and said, very pointedly, "this is not your life, this is not your forever."

So, there it is. The sun rose this morning and so did I. I got up, got out of bed, made myself some tea, some breakfast, cleaned up my garden, bonded with my roommate, and started to fight for better, for more, for different. I hope you'll fight with me.

How did you enjoy the intense over used metaphors in this post?
I sure had fun. Cliches all the way.

Recreating Normal

Let me just begin by saying I really hate the word normal. That being said, it does have it uses, and sometimes, when explaining what it's like to live with endometriosis, it is the only word that seems to work.

I mentioned in my last post that diagnosis was both satisfying and overwhelming. While I felt like it should have come with many answers and solutions, the past 3+ years have proven quite the opposite. I feel as though each time I visit my gynaecologist's office I enter with a slew of questions, leave with new prescriptions to try, and a new list of questions that I continue to add to for the next 8 weeks that it takes to get another appointment with her. I suppose I am happy that my questions at least have a direction, as does my own personal research and reading into the disease and its many possible suggested treatments. The problem with doing this reading and discovering so many people's stories or research about possible solutions and treatments means that I begin to get hopeful for a change, a change that has yet to come.

Now I realize this all sounds rather dire. Poor little privileged girl has a diagnosis of a non fatal but non curable chronic illness. I get it. And pitying myself or having pity from others doesn't solve anything either. But this is my new reality, and even though I've been living with it for over 3 years I don't seem to be getting any better at the functioning part of living with a chronic illness. Or maybe my recent weeks are clouding my ability to see just how functional I've been.

In the 3+ years since I was diagnosed, and the 4 years since I began feeling strong symptoms of endometriosis I have graduated from nursing school, started my first incredible job, increased my volunteer work locally, nationally and internationally, done some personal travel, learned to surf, taken up and given up long (ish) distance running, and had periods of time where I was working 2-3 different part time jobs ( sometimes even while going to school). Of course there are more things that could be on this list, but those are some of the most notable. Sounds pretty normal, right?

What's missing from the above list of accomplishments and milestones are the days of intense struggle. The days that I came so close to quitting so many of the little things that make me happy. The weeks or months that I scraped by to pay rent and other bills because, despite having at least one and often 2-3 jobs, my illness made it impossible for me to work.  And of course the days that I was in so much pain, both physical and emotional, that I could barely manage to get out of bed and away from my heating pad to eat, get more water, or even make the short walk to the bathroom to take more painkillers.

Living with a chronic illness means that there is no normal. well, maybe no normal except for the constant pain and discomfort I feel. I'm still optimistic that with enough medication trials and changes that some pain may be relieved in my day to day life. I strive to find a normal. a life in which it isn't a matter of if I can get out of bed and go to work, or meet friends, go for a walk, make a meal, but when all of these things can happen.

striving for normal is the hope that I hold onto on a daily basis. A cure would be great. Answers and stability in medication would be great. absence of illness would be fantastic. but for now, I strive for normal.

Why has my body turned against me?

It's an interesting feeling waking up one day and feeling like your body has begun to betray you in some way. Maybe interesting is actually the wrong word. Scary. Frustrating. Angering. Anxiety inducing. Beat. Run-down. Those are all better words to describe how I felt when I first began developing symptoms of an illness I could not identify. Stupid. Hopeless. More Scared. Sad. It was an evolution of feelings in the first few months that I began seeking answers to what was happening in my body.

Anyone who knows me is aware that I'm not exactly a stranger to the medical system and how it works, or at times, doesn't work. I knew that tests would need to be done. Referrals made. Uncomfortable procedures performed two, three, four times. I believe in the medical system. On most days I think it is pretty incredible. But finding myself on the patient side of things again, when I had more nursing education under my belt, and still feeling like I was swimming through yogurt was not at all what I had expected from this experience. Here comes the frustration. And the feelings of stupidity. Fear. Why is it taking so long for them to diagnose me? Why are my symptoms getting worse and nobody seems to be paying attention? Why can't I figure out what is going on with my body- it's not like I don't study this every day. And finally, more than 10 months after I started having symptoms and seeking answers- a potential diagnosis. But wait, because we will need to do surgery to confirm the diagnosis. It's only laparoscopic, so you shouldn't have to take more than 4 or 5 days off of work. No big deal.

Let me tell you, being in the medical system does not mean that I am immune to jumping to the worst case scenario when it comes to my health. That being said, I do know enough to know that webmd is not a good tool and more likely than not will tell you that you have cancer. But I was scared. What kind of potential diagnosis would they have to do surgery to confirm? Why haven't I been given access to the reports from my other tests? Why am I not privy to what they are thinking?

And finally surgery day. The nurses and administrators checking me in for day surgery were very professional and kind. They were systematic in the way that they asked questions, confirmed my date of birth, my full name, the fact that I had no known allergies. I knew this process. I understood it well. I just wanted to be on the other side of it. I tried to get comfortable in the scratchy hospital gown I was given, and the ill fitting hospital socks. I tried not to feel vulnerable and exposed as I walked out of the change room to find the nurses station and my bed. I tried not to think about the fact that I had just had to remove all of my clothing, top to bottom, because I was about to have surgery to confirm diagnosis of a problem with my female anatomy. I lay patiently while the nurse started my IV and asked me about school. I wanted to take back telling them all about being a nursing student. I wanted to be treated like everybody else. I wanted to be treated like a five year old, with every movement, every detail, every process being explained to me. And then my doctor was there. Introducing me to the other people that would be assisting her that morning. Marking my abdomen with X's in black marker to indicate the entry points for the laparoscopic tools they would be using. I just lay still. Tried not to think about any of the hard parts that might be coming, and focus on the fact that very soon I would be meeting an anaesthetist, who, at least for the next little while, would likely be my favourite person in the room, because he or she could take the pain away. They were going to take away all the thoughts swirling in my head and help me to drift off into the least restful but oddly satisfying nap.

I don't know why medical professionals seem to have a knack for picking the worst possible times to tell you information about your health. Waking up from surgery, being told I have endometriosis, that they removed as much of the scar tissue as they could, that I would need to stay on birth control somewhat indefinitely in order to hopefully stop any new tissue from developing or my symptoms getting worse. Saying its just about the pain management now, and we can work on that. We have time. This condition isn't going anywhere fast. Oh and fertility. About 40% of women who have endometriosis are not able to get pregnant. But you're only twenty two, so let's not worry about that for right now. Take a few days to rest, and then follow up with me in about four to six weeks.

Well, ok. Thank you body, but I don't really like you either.