Monday, January 11, 2016

A New Era

Well, well, well; onto another testing period.

This time though, we may have things figured out. At least I hope we have things figured out cause I'm ready to start feeling better. After some research and some help, I've been learning about Lyme Disease. Not many people are educated on Lyme Disease and the effect in can have on one's life. The diagnosis is very hard to make and many people, including some doctor's, believe that you cannot contract Lyme unless you've been bitten by a tick and get a bullseye rash surrounding the bite. That, is completely inaccurate. The thing is, I didn't even know about Lyme Disease (what it could do) until recently. I had heard of the condition, but had no idea what it entailed or even how it was contracted. Crazy thing is, Lyme Disease would literally cover every single symptom I've ever had in the past few years and even CRAZIER thing, I was bit by a tick back in 2010. I experienced a wicked flu and stomach pains, etc. a few weeks later that continued on throughout the year. That was when I first started feeling pretty bad. But, the pains were mainly blamed on my menstrual issues at the time. I had a diagnostic laproscopy and endometriosis was confirmed (although it is now confirmed by biopsy that I have Endosalpingiosis, not Endometriosis). After the laproscopy and a new regime of medication and continual birth control to better control my menstrual cycle; the pain receeded quite a lot. I had about a year and a half of solice. The best year of my life. I was able to travel, make tons of amazing friends and meet great people, spend three months volunteering and adventuring around Africa, hiking mountains, skydiving, bungee jupming. Seriously, THE BEST TIME OF MY LIFE. I long for that year to come back to me. I am so nostalgic about it not only because of the amazing memories I made but because it was the one year that I felt okay. There were the odd pains here and there but it was nothing compared to what I had experienced in the past, and nothing at all compared to what I feel now. 

When my symptoms started up again, they came fast. Aches and pains in my joints to the point of limping and needing wrist and knee braces. On and off headaches and light sensitivity. Stomach pains that have been diagnosed now as Irritable Bowel Syndrome. Menstrual pains came roaring back to life requiring another surgery. In order to figure out why I was in so much pain I went through a surgery, a colonoscopy, an endoscopy and a million other tests from heart monitors, to EKG tests (electrocardiogram), to countless bloodwork readings. SO many tests, so many hoops to jump through; all to end up with absolutely no answers as to why my body was being ravaged with pain. 

Going through all of that and coming out with no answer was really disheartening and frustrating. Some of the time you start to believe when people say "Maybe it's just in your head," because you haven't been able to find a reason so far. But then a wave of pain hits you so hard that you can't breathe, speak or move and you know, this is not all in my head. It could never be all in my head. Throughout this struggle of looking for an answer, I've learned the importance of being your own advocate. Anytime someone who is facing an illness, big or small, and asks me for advice that's what I tell them: BE YOUR OWN ADVOCATE. You are the only one who will ever know what you feel and how it feels to live in your body. Be honest and real about your pain and your symptoms. You never know how serious something could be, or on the other hand, you could be living with serious pain that could have a simple treatment that would correct it. Always, always, always speak up if something feels wrong in your body. Pain is a sign that something is wrong.

Okay, back to the testing era. After the tests and the disheartening results; I tried to push myself through and start living a normal life again. I got a new job (full-time, 10+ hours on my feet each day, busy work, social interaction, etc.). Let me tell you, this was by far the biggest wake up call I have ever experienced. After only a few training shifts (only 4 hours at a time) I would come home with my legs shaking and cramping, my head pounding, anxiety-ridden and ready to collapse into bed for a week. This brought on a huge wave of anxiety that I hadn't experienced in quite some time. Anxiety is a scary thing and we all cope with it in our own ways. My anxiety tends to build up and up and up and then just blow into a full-blown panic attack. I can still vividly remember collapsing on my bathroom floor, sobbing, my entire face drenched in tears. Crawling into the bath so the heat could soothe my aching body, and continuing to cry and hyperventilate and just thinking "Is this really what my life is? Is this how it's going to be for the rest of my life?" That night, I finally was able to open up to my mom about my struggles with anxiety, depression and how serious the pain and fatigue was that I had been experiencing. She assured me that I had been trying hard this whole year and continuing on as usual through the pain and it was okay to take a break for a while. This was the most relieving thing I had ever heard. But also, the most terrifying. That night, I quit my new job and cried a lot more and tried to accept my new normal. 

Since then, I've been working hard on controlling my anxiety and keeping my depression in check. Which is a full-time job in itself. I've been working with my councellor to learn to find my identity amongst my pain; which is a million times harder than it sounds. The thing with chronic pain and chronic illness is that literally every minute of every day, you are experiencing symptoms. Your symptoms become a part of you. Your pain and fatigue are a part of you. And as much as I wish it didn't, it becomes who you are. It determines if you're going out with your friends later or spending the night in pajamas with your heating pad. It determines the course of your life. Working through this without an answer has been incredibly difficult. But I'm doing it. I am finding my identity even in the pain.

Now, about Lyme Disease. Here is the thing, you would think that out of all the medical professionals I have worked with over the past few years that one of them would mention the one disease that covers all of my symptoms. But no, no one ever mentioned it. Which really frustrates me because, if I had known two years ago about Lyme Disease, maybe I would feel better by now. I'm just going to clear this up, I am not diagnosed with Lyme Disease. There is a chance that I don't have it. But it would make a whole lot of  sense if I did. The thing about Lyme is that it is extremely difficult to diagnose. The Canadian testing of Lyme is way behind and only has 2 tests that are very inaccurate and give a false negative 55% of the time. My next step is to have the Canadian tests done, and see what the result is. But if it comes back with a negative result, we will need to do further testing through an American lab. Which will end up costing about $4000 for a complete Lyme Disease panel. Which clearly, with me not working, is money that I don't have. So, that's an issue for another day; but that's where I'm at now. In another era of tests and questions. 

After all of this new research, the people in my life have been SO supportive and helpful. To finally find something that could actually be the real answer has been surreal. Friends have reached out to family members and other friends who have experience with the disease and given me loads of info. My aunt has gone out of her way to get me info from the Lyme Disease Foundation and use her hospital contacts to help me out. Everyone has offered very encouraging words and information. I know this is still a long road ahead but I'm ready to tackle this next challenge and hopefully come out on the other side with an answer. 

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