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.