Friday, January 29, 2016

The Whole Story..

Update and Overall Story of what the heck is going on with me these days: Over the past month or so we have been looking into the possibility of Lyme Disease. It seems to be the only thing that actually covers all of my symptoms and unfortunately, 5 years ago I was bit by a tick and didn't notice it for a few days. I did end up very sick afterwards but because I didn't have the bulls-eye rash that Lyme Disease is often recognized by, no one suggested to me that it could be Lyme Disease. I now know that the bulls-eye rash only shows up on approximately 30% of people who become infected. Since that summer when I ended up having to leave the camp I was working at because I was so exhausted and sick all of time, I continued to worsen. On and off I experienced stomach problems, joint aches, fatigue, cramping and general pain. My doctor's blamed this on the fact that they thought I had Endometriosis. Once the surgery was performed to remove the endometriosis, things improved a little with a combination of continual birth control to balance hormones and the sucess of the surgery. I was still tired and sore, but nothing compared to what I had experienced before. After about a year and a half of mostly pain-free living, I began to experience all sorts of symptoms that we couldn't find an explanation for. I was tested for everything under the sun that my doctor's could think of. Again, they came back to blaming Endometriosis. They assumed that a flare had been causing my problems and another surgery was booked. I had this surgery last year in April. This time, they decided to biopsy the tissues they were removing and it turns out that I didn't have Endometriosis at all, but instead I have a rare disease called Endosalpingiosis. Either way though, it caused me pain but it did not cause the pains that I had been experiencing specifically. I had hoped that just like after my first surgery, things would let up and I would start to feel better again; but things took a turn for the worst. I ended up with multiple post-op infections and was put on antibiotics that made me sick and weak. I couldn't regain my strength after surgery, still haven't. And since then I've gotten infection after infection. The following summer (this past summer 2015) I experienced a boat-load of new symptoms such as muscle spasms, twitching, hand and arm tremors, this awful pinching headache on the left side of my head right at the front, short term memory loss, trouble focusing and concentrating, problems with word-finding, stuttering and jumbled speech, bladder problems, continued digestive problems, muscle aches, joint pain, stiff joints and extreme sudden jolts of pain that had absolutely no explanation. Upon hearing of all these new symptoms, my doctor began to consider the possibility of Multiple Sclerosis. Multiple Sclerosis causes the demyelination of the nerves in the brain and spinal cord causing the symptoms that I had been experiencing. An MRI was booked and fortunatey we were able to rule out the small possibility of a tumor but not fully rule out MS. We are still waiting on a Neurologist consult to run more tests to either completely rule it out, or possibly diagnose it. Through all of this, I had tried to refrain from googling symptoms and making up my own opinions as to why this was happening to me. I no longer had any hope that my doctor was going to figure out what was going on with me. Someone suggested to me that I be tested for Lyme Disease. As I began to research Lyme Disease and how it happens and what it causes; it felt as if I were reading the story of my life over the past few years. I had no idea that something as small as a tick could change someone's life so drastically and cause a chronic illness. After researching and reading countless articles and getting in touch with some people who live with Lyme Disease, I began to seriously consider the possibility that this could be what has been causing my problems all along. I went to the doctor and requested to have the ELISA test (enzyme-linked immunosorbent assay) and the Western Blot Test. Now, because of the research that I had done, I found out from a naturopath that I had been in touch with that the Canadian testing for Lyme Disease is very inaccurate. The Western Blot test is only done if the ELISA test comes back positive (The ELISA test uses a change in colour to identify antibodies and is only technically reliable a few weeks after you have first been infected). The Canadian Western Blot Tests tests for something called Borrelia Burgdorferi which is the bacteria that causes Lyme Disease, the problem is that the Canadian test only tests for ONE strain of the bacteria, strain B31. Which is just ridiculous. So, of course my Canadian Lyme Disease Test came back negative. You should also know that this test very often comes back with a false negative. Thankfully there is an American Lab that offers a chance for Canadian's to have the real testing done for Lyme Disease. Unfortunately though, it comes at a cost. These tests are very thorough and expensive. This is where I am at now. Unfortunately since the worsening symptoms occured back in the summer, I had to quit my job, I haven't been able to work since September. Because of the cost of perscription medications and my lack my medical benefits, I've had to use my savings to pay for meds and supplies that I need to remain comfortable through the pain and keep up with my regular bills and student loan. I don't exactly have hundreds of dollars laying around to pay for these tests. I have a very amazing and generous friend who has offered to pay for half of the test and I am so grateful and thankful to her for being here for me throughout all of this. But there is still a remainder of funds needed. My awesome cousin Emily has offered to create some chronic-illness themed Valentines cards that will be available for purchase online and the proceeds will go to cover the remaining cost of the tests. There is a chance that the test could come back negative and I am working on preparing myself for the possibility of that, but there is also a chance that we will finally find the answer we have been looking for all these years. In the case that we do get our answer, we are going to require a lot more funding. Because Canada does not want to accept Lyme Disease for what it really is, a chronic illness, the treatment costs are extravagent and often times Canadian resident's who have the disease need to travel to the States for doctor's appointments and treatments which all cost a lot of money. Hopefully, in that case, I will be able to set up a fundraising campaign and fundraising events to help out. I just want to say that I appreciate every single one of you who has taken the time to check out my blog posts or read my updates or just simply ask me how I'm doing. This has been a long and stressful couple of years and especially the last few months things have been very difficult. But I remain hopeful that I will find an answer and that I will be able to work towards improving my quality of life.

I also want to take this opportunity to spread a little awareness of Lyme Disease, because even if Lyme doesn't end up being my diagnosis, it is a horrible disease that I believe deserves to be accepted in Canada. Please, if you live in a wooded-are or spend a lot of time camping, hiking, or in the forest -- make sure you take the time to check for ticks and practice tick prevention by wearing bugspray with deet and when you can, long sleeves and pants to avoid bites. I had no idea all the years that I worked at camp and living in a forest literally my entire life that a tiny insect could cause such turmoil in someone's body. If you do encounter a tick bite, don't hesitate to go to the doctor immediately to properly have the tick removed and to be tested and given antibiotic treatment immediately. The sooner it is treated, the less likely you are to become chronically ill.

Thank you again for all of those who have supported me finanically, emotionally and spiritually during this time. I appreciate it more than you will ever know and your prayers and well wishes mean the world to me.

Tuesday, January 19, 2016

I'm Better! Wait, Nope.

I am just seriously pissed off right now. Except I'm also kind of laughing at myself. 

On Friday I came down with a horrible strep infection and it hit me so hard and so quickly. One minute I felt alright, the next I was in agony. Swollen, red, bleeding throat. Neck pain. Head pain. Body aches. Fever. It sucked. But then I started antibiotics on Sunday, which still suck because they make me nauseous BUT my throat and body are feeling a lot better. Here's the thing, if you have chronic pain I think you'll understand this: When you go through a bad flare whether that be from infection or seemingly random and it finally ends, sometimes you feel like "Oh I'm better."

Better. Ha. Except for the fact that we are chronically ill. But we feel better for a moment because we're no longer at a 9 on the pain scale. 

Because I was feeling soooo much better today after a good sleep, I had a nice long shower and was suddenly inspired to clean my entire bathroom. So I scrubbed the shower from top to bottom, washed out the tub and all the bottles in it, cleaned the toilet inside and out, washed the sink, counter and mirror. I did it all. 

After all the cleaning, I figured I should take a break. So, I sat down and did some Pinterest-ing, had dinner and listened to music. I got back up to get my bedding out of the dryer (because yes, I also stripped my bed and washed all of my bedding) and I just about fell over. This pain developed started in my left hip all the way down to my foot. It's been two hours now and it still hasn't let up, it's just getting worse. But I need a bed to sleep in tonight, so I went back downstairs and made my bed and got my duvet cover on (which is not an easy task). I ended up putting away my laundry too and tidying up my room. Which makes me now just want to die.

Yeah.... I'm not better. Haha. Which is why I'm laughing at myself. As I was showering earlier I was listening to my new favourite song and singing along and feeling so happy, like I was on top of the world. I was thinking about all the things I want to do this year and pretending like I actually had a life and friends to hang out with. And now I'm just in the middle of this rude awakening, wrapping my leg in a heating pad and popping muscle relaxants; wondering if it would be worth the cost to buy another two heating pads so my entire leg and foot could be wrapped up in the soothing warmth. 

Ahhhhh, the life of us chronic illness folks is just such a strange adventure. *cue my laughter at my dumb self for thinking I was better*

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. 

Friday, January 1, 2016

What I've Learned..

Happy one year anniversary to my blog!

I keep seeing all of these statuses on facebook about how great 2015 has been, but for me 2015 has a really hard year. Going into it, I thought that 2015 would be the year that I got better and as we all know, that is definitely not the case. And that's okay.

2015 wasn't the year I got better, but it was the year that I got worse. Which sounds like a negative sentence but there were so many things about 2015 that made me into the kind of person that I am now. The kind of person that can handle a life of chronic pain. 

A life with chronic pain is tremendously difficult and isolating. Continuing to write this blog has provided me with a theraputic way to put my feelings into words and to be able to share them with the world. I have seen so much good out of this blog and I am so thankful that I started to write it one year ago today. Although 2015 was in a lot of ways the worst year of my life, it also was the year that I learned the most about who I am and what I've learned through the challenges of the past year.

Here are a few of the things I've learned because of chronic pain:

- I am now a much more understanding and less judgemental person because of chronic pain.

Chronic pain has made me realize that you truly cannot judge a book by it's cover. People say to me all the time "Well, you don't look sick," as if that has anything to do with the fact that my body is being ravaged by disease inside. Just because something appears to be a certain way, doesn't mean it really is that way. I am often judged on the fact that I am 22 and living at home and currently not working but what people don't know when they hear that is that I am in chronic pain and fighting debilitating fatigue. Realizing how hurtful the judgements of other's can be in my personal life, has taught me to withold judgement because you never know what someone is going through and what they are fighting.

- I have learned the importance of taking care of your emotions.

Before this year I was always the person who held her emotions in until one day they bubbled over and I got it all out. But I would hold it in for so long, and it would hurt so deeply. Because I didn't share how I was feeling, I ended up severly stressed, depressed and full of anxiety. This led to panic attacks, breakdowns and really low moments where it felt like I had hit rock bottom. When I learned that I still had a long road ahead of me post-surgery I felt like my whole world had collapsed. When I finally had to quit my job to take care of myself, I felt like a failure. The best decision I made this past year was to start seeing a councellor. Since seeing my councellor I have been able to express my feelings in a more controlled manner and state how I'm feeling, or my fears to others. I have learned that when you're holding back and trying not to breakdown, sometimes the best thing you can do is just let yourself feel. Let yourself breakdown and cry and get it all out because you'll feel better once you do. And then figure out what it was that made you want to let it all out. Writing my blog, as I already mentioned is theraputic for me, and it has been a huge part of my journey in taking care of my emotional well-being. We downplay our emotions all of the time and it sucks because our emotions effect our health more than we could ever imagine. Emotions are important. Don't stifle them.

- I have learned which people in my life actually care about me.

This one in particular has been a hard one. Let me just say this, if you suddenly got sick and found out that you were never getting better, you would be shocked at the amount of friends you would lose. On top of all of your personal losses and struggles, losing the people you thought loved and cared for you is so hard. But I can see now that I am left with the most supportive, caring and loving people that I know. Chronic pain weeded out the half-way friends and the fake-friends and the "friends" that were only looking for personal gain in our friendship; and I am beyond thankful that life has given me that filter for friendship. Someone with chronic pain doesn't have time for fake-friends or part-time friends. I have learned that those who have stood by me and been real with me from the beginning are the ones that I will keep close and cherish for the rest of my life.

- I can now see that God is working in and through me.

This one is something I struggled with a lot over the past couple of years. Personally, my relationship with The Lord felt forced and fake and I couldn't handle pretending anymore. For a while, I drifted away, hoping that soon I could feel the real connection again that I once had with God. That connection felt like it left me for a very long time. Since I had spent the last ten years of my life dedicating it to God, I was so concerned that I would never find my way back. You always hear that if you run to God, he will accept you with open arms. I do believe that, but it isn't always that simple. There were countless times that I prayed and cried and broke down in hopes that God would show me something or do something miraculous and restore our lost connection. But it never amounted to anything until I really hit rock bottom. Now, after a few intense weeks of coming to know God again and his love for me, I can see how much he's worked through my chronic pain. God has been able to use me, even though I'm sick and in pain. He has worked in me to change the lives of others. He has blessed me with the traits of being open and honest, and that has helped me to help so many others. I am continually wondering what God's purpose is for me with the state my life is in, but my faith has been restored because I now know that God can use me in whichever state I am in and I trust in His plan for me.

So, even though 2015 was painful, difficult, challenging and scary it brought about so much personal growth and spiritual growth that I all I can think to do is thank God for what he has taught me. There will always be hardships and tough times, but I'm trying to remember that tough times don't last, tough people do. And I'm learning that I'm tough and I'm strong and even though my pain may never fully go away, there are things that I can do even with this pain. There are people that I can help, even in this state. There are always things to be happy about. God is always on my side, cheering for me. And that means everything.