As usual, I have not posted on here in a very long time!  I get so caught up in my life that I forget to stop and take review of it every once in awhile.  I suppose I did post for my birthday but I still feel like taking things back a bit further, to the beginning of the year (with a little added backstory). Things have changed for me big time since then (and also not so much).

Some of you may know that I have fairly severe endometriosis, if you didn’t know, now you do.  I have been dealing with it since shortly after I turned 14, but wasn’t officially diagnosed until I was 21.  This fact tends to make me a bit angry, since I wasn’t being properly treated, for all that time, and I was also seen by my teachers, and even sometimes my friends and family, as a lazy slacker and a hypochondriac.  I am neither of those things, I am insanely passionate about life, learning, and have never claimed to be sick when I wasn’t.  There was no point in faking sick.  During the rare times I have been truly healthy in the last 9 years, there was no way I would take it for granted like that!  People don’t realize how much my endometriosis affects my life, It causes me to be pretty much constantly exhausted, easily susceptible to illness, damages my internal organs causing bleeding, scaring, pain, and loss of function.  I missed between a third to a half of all of my high school classes, have been to the hospital more times than I can count, feel like I spend most of my life in doctors offices.  It’s even taken me close to 4 years to finish a 2 year diploma program.  When I had my first surgery in October of 2010, it was discovered that my left kidney had lost some of it’s function, due to scar tissue kinking off my ureters.  I had been complaining of pain on my left side for 2 years before this, and it was pretty much ignored.  I had so much damage to my bladder and intestines, that they too were no longer functioning properly either.  My complaints of these pains were always explained away as irritable bowel syndrome, and my frequent bladder infections, and never further investigated.  I also had a  mass on my right ovary that was sent to pathology and proved to be benign (thank God).  During my surgery, there was uncontrolled bleeding that couldn’t be explained, foam packing was finally able to stop it but I needed to stay overnight in the hospital, due to the blood loss.  Recovery was hard, I even had to re-learn how to pee, as ridiculous as that may sound.  Since I had so much work done on my bladder and kidney, those organs and my muscles were kind of in shock.  It took me 2 weeks to be able to voluntarily pee again (I’ll never take peeing for granted again after that experience).  Also, every time I would get up to pee, or move, shower, etc, my blood pressure would bottom out and I would collapse, so lucky me, I got a bathroom escort, I know there are much worse things.  Overall, it took me 8 weeks to get back to my ‘normal’ life.  I didn’t share much of my experience with anyone, even family and close friends, I was embarrassed.  I had always been mocked for talking about my pain and illness, because it was perceived to be exaggerated or just all together fake, I couldn’t take having this experience being reduced to that as well.  I kept it to myself and let it give me strength instead.

Flash forward to January of this year.  I had only been back living in London for a month, after working traveling as a nanny for my cousin’s 2 year old daughter.  I did this to take a break from school and re-group.  I e-mailed my program director to set up an appointment to get me back on track. I waited 2 weeks and got no response.  Being me, I got on a bus, went down to the school, up to the human services offices where she works and camped out.  I informed the secretary that I was there to see the director and I was not going to leave until I did.  I waited 4 hours, but I got what I wanted (I often do, I am very persistent).  I was doing so well for the first 2 months, barely missing classes, feeling good, getting my work done, I was so happy.  I had even started seeing someone who wasn’t put off by all of my illnesses and pain and general life shit. Then the end of february came and the first hospital visit since the end of November.  I was throwing up, shaking violently, heart rate and blood pressure through the roof, having major GI problems in a tone of pain and so dehydrated it was scary!  All the doctors could do was give me iv morphine, ondasatron (an anti-nausiant typically given to patients on chemo), and fluids.  When I had stabilized, I was discharged.  I saw my family doctor 2 days later and heard what I’ve been hearing for as long as I can remember, that I probably had a flu bug or it was my “irritable bowel syndrome”.  2 weeks later, I was in the hospital again, same symptoms.  I had 2 different types of ultrasounds (I’ve had dozens of those).  1 is essentially like being object raped, I really hate those!  Both were inconclusive.  Next I got to go for an abdominal CT, not my first of those either.  It showed damage to a few of my organs, which was expected due to the endometriosis so everything was just attributed to that.  They sent me for an MRI of my head, just to be sure it wasn’t something neurological, and when that came back clear, and I had stabilized, I was again discharged.  By this point I had lost 12 pounds in 2 weeks. I made an appointment with my OB, who specializes in endometriosis and who performed my first surgery.  She told me there was really nothing she could do, that it was still to early for more surgery, that she had tried everything she could except send me to a nutritionist, to see if a specially tailored diet could help lessen some of my symptoms and stop the rapid weight loss.  She also took me off continuous birth control, because although it stops my cycle, the estrogen feeds the endometriosis causing it to grow and spread faster. I went to see this nutritionist a few weeks later, by then I was down another 5 pounds and seriously flunking all of my classes.  The nutritionist told me not to eat dairy, eggs, soy, red meat, or any insoluble fibre.  A week later, another hospital visit, same general results.  I lived on that horrid diet for 2 months and the GI problems and vomiting finally did stop.  I lost a total of 22 pounds in  2 months and lost almost a whole semester of school (and my financial aid). It was now May.   On May 11th my neighbour had to bring me to the hospital yet again,  This time I was there for 2 days.  I had double antibiotic resistant kidney infections.  More weight loss, the symptoms returned.  My family doctor took me off the crazy diet, it didn’t appear to be what had stopped the symptoms the first time, was making me extra miserable, and I couldn’t keep loosing weight so fast.  I was down 26 pounds.  Once the kidney infections had cleared up after a month of treatments, I was doing better.  I celebrated my 23rd birthday, went out with friends for the first time in months, and was happy.  I even gained back a little weight. I went to Ottawa mid July for 10 days, to house sit for my cousin for the 3rd year in a row (I was sick for the first 5 days).  

On August 4th, I left with my parents on a trip to Europe for 15 days.  Sitting for long periods of time aggravates my symptoms so I got sick on the plane ride over, but I didn’t care, I was so excited!!  We arrived in Barcelona Spain, rented a car and drove to Marseille, Cannes, and Nice France, then to Monaco (my all time fav), then to Milan and Venice Italy, then to Vienna Austria.  After that we drove through the Czech Republic to get to Germany, where my sister Madlen (not blood but she’s family) was getting married.  The wedding was on August 11th and was incredible.  Her children Johannes (5) and Frida (3) were the ring barer and flower girl and looked beyond adorable.  We stayed in Germany for 5 days, then went to Munich and Dachau where we toured the concentration camp.  That experience will be a whole different post. We went to Zurich and Lucerne Switzerland, Lyon France, then back to Barcelona for 2 days before heading home.  I was mildly ill for the entire trip, but it was beyond worth it, memories that will last a lifetime!  

On August 13th, while I was in Germany, I was reading one of my heros, Maya Thompson’s blog and she had just posted about a marathon and half marathon, being held in Phoenix on January 20th, to raise money for The Ronan Thompson Foundation.  I instantly knew I would run.  I knew this would be a game changer for me, that training to run would give me strength to deal with my daily pain.  That the half marathon it’s self would give me a goal for recovery after my next surgery, which will happen sometime this fall, unless I feel I can wait to have it at the beginning of February, after I run.  Either way, I know this will be so good for me, and I am going to raise so much money for Ro’s foundation!  Reading Maya’s blog has saved me in a way.  Knowing what Ronan went through, what his family went, and continues to go through, is and was so much more than I have to deal with, and Ronan was so much stronger than me, his mom is so much stronger, I aspire to their strength.  Ronan is one of a kind, he makes me love and appreciate my life so much more, he is the ultimate, my hero. I love harder, live better, try more, aspire to greatness and have a fire in me that I never had before reading Mays’s blog.  I can’t wait to kick ass in that run!!

So I am currently training my behind off, and trying to get myself back in school.  So far, it looks like I will have to be my crazy persistent self again and do another camp out as I am not getting a response.  I will also have to figure out how I will pay for said school, seeing at my financial aid was cut off when I failed all those courses in the spring, maybe a bit more of my craziness in the financial aid office could be helpful ;)  I have not missed a training days in 3 weeks, until saturday, yesterday and today.  I have been feeling really rather shitty and am trying to keep myself away from that damned hospital at all costs.  I think I may be loosing that sensibility however, as I am tempted to put on my running gear and do the 4 miles I missed out on yesterday.  Ro give me strength, you always do!