Friday, March 27, 2015

And down the rabbit hole I go...

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I preface this post by stating I'm finding it difficult to paint a clear picture of the past 12 years of my life. I have so much to share. I ask that you please embrace the chaos in my writing as it is a reflection of my experience; my inability to catalogue these series of events exposes just how utterly confusing and overwhelming this all has been. Had I known the importance of questions and documentation I would have saved myself years of unpleasant experiences but that's life. Each experience renews our mind, it's quite lovely really. I feel refreshed and empowered each time I reflect on how far I've come.

My introduction briefly stated that I have been diagnosed with hypothyroidism. That was a pivotal time in my life, a time where everything changed and my health became the dominant element of my existence. I affectionately refer to this as my ticket down the rabbit hole.

At 17 I remember consistently feeling tired and cold, no matter how little I ate and how often I exercised I could not loose weight or gain muscle. I had numerous visits to my family doctor as I was frequently missing morning class because I could not get out of bed on time. My body felt heavier, it took more effort to complete daily tasks and I was doing everything in my power to increase my energy. I was exercising, eating clean and healthy foods, sleeping (a ton), abstaining from alcohol and drugs.

After testing for iron levels I was told quite convincingly by my doctor this is just a phase, you're a teenager, this is normal. Months went by. I endured lectures from my teachers about attendance, about how being lazy is not going to get me far in life. My friends noticed a change in my behaviour, my best friend K brought to my attention that I was being quite the bitch and right then I knew something had to change; I felt powerless. I continued to gain weight (30 pounds in two months) and could not understand what on earth was going on with my body. I begged God to please help me. I started getting depressed, secluding myself from family\friends and stopped enjoying the things I loved most. Life became overwhelming, I cried a lot. I was told I'm not a child anymore, to control my emotions, but how could I? My body was failing me and nobody seemed to show any concern.

After a candid conversation with my dad he suggested I ask to have my thyroid tested for hypothyroidism. He said that he has been diagnosed and although I don't fall within the typical age range that it is something to rule out. And so I convinced myself to set up one last appointment with my doctor explaining how my life had been impacted and firmly asked for the blood test. My doctor was a little hesitant because of my age but agreed. The test was preformed and I was officially diagnosed with hypothyroidism. I was told that this is a common condition, that it is easily regulated by medication, a prescription was provided and off I went.

Now you have to understand at this time home computers were just becoming standard and my parents fear of cyber crimes were the deciding factor in postponing this purchase. There were no smart phones with google and I was raised with the societal norm to respect and not question the doctor's word. As I understood, this would be as simple and routine as taking my one a day Flintstones vitamin.

After a month or so I did notice a slight change in energy and I began to loose weight but I still had some symptoms:

•I was chronically cold
•My hair and nails were brittle
•I was constantly hungry and unsatisfied after meals and..
•My depression never really corrected itself

After four months I voiced my concerns and was placed on antidepressants. Months after months went by without any improvement, drugs were changed and the symptoms remained constant. I decided that I no longer wanted to experiment with antidepressants because I was unable to truly feel. I had a muted sense of emotion which took away from my quality of life, and I questioned if depression was the right diagnosis. (I have since learned that depression can be a result of an underactive thyroid.)

So after watching a few episodes of Dr. Phil (ridiculous I know) I secretly started researching counselling at school and I felt that that may be a better route to treat depression. I was initially sent to a counsellor at the recommendation of my dad's insurance company, who after our session I firmly believed needed a change in career. After reading my file she told me that I must have been beaten as a child and she had me listen to a tape about an abused princess before I was even able to speak. Let me make this clear I was never beaten and this lady's a quack. I begged not to go back but my mom explained that insurance will only cover certain professionals. I refused and with some pushback I had the opportunity to attend sessions with a few more of their recommendations before I said enough is enough; at 17 I knew that the advice these adults were providing was absolutely insane. In fact I'm confident if I had stuck with some of these characters that I would be worse off. After that experience I truly question the validity of the screening process for these insurance companies. I wanted help so I worked hard at two jobs and paid for my initial sessions with a wonderful lady who was professional and treated me with respect. She explained how therapy can help change the brain and improve my life, that it isn't all about her telling me what to do and that I had the ability to change. It is through her I fell in love with healing through cognitive therapy. I worked hard and things improved.

In terms of physical heath things only got curioser and curioser. My immune system became hyperactive and thus overburdened and ineffective. I was hospitalised numerous times for unknown viruses, I was one of the first to contract swine flu at my university, I had numerous painful episodes with my bladder, at times my vision became blurry with black specs, I contracted weird conditions such as pityriasis (an uncommon skin condition), my asthmas became an ongoing battle,  I developed stomach ulcers and my list of allergies became extensive.

This is what I refer to the rabbit hole; take this pill to make you better, and this pill to subtle the side effects. I truly felt like Alice in that the potions were never quite right. And my understanding of this new world was just so confusing. I felt powerless, scared and very alone. You see at this time in my life my dad lived in Afghanistan and my mom had enough on her plate, I chose not to worry either of them until I was provided a solid diagnosis and treatment plan.

I attended appointments with neurologists, allergists, cardiologists, urologists, infectious disease specialists to name a few. I endured countless MRI's, CT scans, ultrasounds, blood tests, urine tests and spinal taps. One doctor told me he believes I have multiple sclerosis, another declared this is just allergies, another said it's my DNA, that I am missing a protein and there is nothing I can do but treat the symptoms and start a regime of zinc supplements. I was barbarously told by an infectious disease specialist that he believed I had bladder cancer. He said that after he reviewed my online medical history that not one of the urine samples came back positive for cultures (meaning I had never had a common bladder infection) and that it was my responsibility to check back with the doctor before I took the antibiotics. I sat there in shock as he shamed me for not taking control of my health. It took all I had not to lash back with harsh words and in doing so I was unable to explain that for over a year I had been searching for a competent doctor, that I had spend hours upon hours researching and calling available physicians but those who were available seem to be incompetent in regards to my body. That I felt overwhelmed by the negative side effects of their mistakes. That I had been hospitalised several times for allergic reactions to antibiotics prescribed, ignoring the list of drug allergies provided on the countless new patient forms I filled out. That my work didn't support my need to take time off to pursue my health because they were short staffed and that I dependent on that income. That finding an employer who supports schedule adjustments is difficult and although the law may be in my favour that it doesn't always prevent discrimination. That I can't afford a law suit every time the law is not followed. That reporting employers generally results in a he said she said and I can't risk being let go. That being young and new to the workforce I have no credibility behind my name regardless of the truth. I was furious, who did this ignorant man think he was?  I stewed about how I was going to write him a letter explaining just how fucked up our health care system was and that assholes like him have no business telling me how to live my life. He didn't know me .. but then a flash back of Jerry Springer popped in to my head (which often happens when I fly off the deep end) and I decided to let it go an move along.  After all he was partially right, I did have to take my health in my own hands, however a little guidance would have gone a long way.

After a mild melt down I booked an appointment with a urologist and underwent some pretty uncomfortable tests. The results came back, I was relieved to hear that I did not have cancer yet I was concerned that they could not determine what was causing my bladder to become so inflamed. I was placed on a concoction of antibiotics chased with an antihistamine in an attempt to heal the inflammation and prevent an allergic reaction. I have since learned that this treatment has depleted my gut of essential bacteria and the long term use of antihistamines reduced the effectiveness of my thyroid medication and did nothing to improve the state of my bladder. In fact I'm in the process of being tested for leaky gut (intestinal permiability) which could very well have been caused by this overuse of antibiotics. Please note that I firmly believe there is a time and place for drugs, but unfortunately this was not one of those times. I am also very passionate that if antibiotics are prescribed that it should be standard practice to also prescribe a treatment of probiotics; antibiotics rid your body of both harmful and essential strains of bacteria.

From here I have developed debilitating migraines, one in which I almost lost vision in my left eye because my retina was detaching from the pressure. The treatment for migraine has been a prescription for highly addictive narcotics and a referral to the headache clinic. It has been two years and I'm still on the waiting list...

I desperately needed help and conventional medicine was not working so I stepped out of my comfort zone decided to take a leap of faith with something a little more natural. I booked my first appointment with a Naturopath and this doctor told me everything I wanted to hear: this is common and very treatable and I would be healed in less then 6 months. I eagerly bought all the recommended medicine that came in little glass vials and preserved in what I believe to be rubbing alcohol. So for months I followed this painfully disgusting routine of drops of alcohol infused with natural healing several times a day. I accompanied this with spouts of acupuncture, cupping, yoga and meditation (well I sure tried to tame this mind of mine). And at the end of all this I had an empty savings account and over $5000.00 of credit card debt and..  I was still sick and tired.

I quietly gave up, I threw my hands up and said I'm done. I decided I'm just going to have to live with the body I was given. And so I did, I got through the day and crumbled in pain each night. I was numb and uninspired until I fell in love with a man named Nick.

We met through mutual friends. I was dragged out of my house of pity and happen to sit beside him. He asked about me and I said was "complicated", he smiled politely and continued our conversation. I had no intention of dragging him in to my mess but I was intrigued, I mean I said the one thing I knew would send a guy running and he just sat there without reaction and politely smiled. It took some time and a lot of tears before I opened up about my health and without hesitation he built me up with unwavering support. We quickly grew inseparable through sports, through food and through laughter. We then slowly grew apart through insecurities, egos and lack of communication, but there was something about our connection that we decided to work through the mess and build a life together.  This man of mine has helped transform all of my failures in to lessons, all of my suffering in to life and all of my limitations in to opportunities. He has taught me to take back my power and I have taught him to be vulnerable. Our synergy is alchemy. Without him I'm afraid that I would still be accepting what I believed to have been my fate. And so I've resumed with my responsibility to heal and just in time, you see in the past few months my body has reached its weakest point and now more then ever I need the strength and resilience to continue.

So, here I am with an underactive thyroid, chronically fatigued, an unhealthy gut and a side of migraines. My symptoms have been confirmed through countless tests as legitimate but there is yet to be a consensus of a diagnosis or a treatment plan. I struggle to communicate to others what I am going through as I'm still in the process of understanding my reality and I really don't expect anyone to understand; I "look" healthy and I don't have a scary name associated with my illness. All this said I am so so thankful. I have a plan, a doctor who specialises in my condition and an abundance of love from family and friends. I can't wait to complete the required testing so I can begin to fully understand my body and start the process of healing.



Be The Change You Wish To See By Accepting Responsibility For Your Life xo

 I have had the privilege to interact with many health care professionals among many different designations and as a whole through my considerable experience as a patient I have this message:

Doctors, you have the ability to improve our health care system. Through education, communication and the desire to understand all contributing factors you can improve our lives. In fact, as a profession, through collaboration you can improve standards and through this can improve our society and diminish unnecessary suffering. Every day you have a choice, you can either be someone who gets by and earns a desirable income or you can start questioning standards and progressively making modest changes in an attempt to drive a movement of improved health care. Again through my experience, I believe the majority of you do not enter this field to achieve status quo but I suspect you feel your hands are tied by limited budgets and legislation. I understand this and appreciate change is gradual. I ask that you speak up and do what you can. Question the use of drugs over nutrition. Seek education in health not medication. I am blessed to have such a tenacious and resilient soul but I fear that if this is what I am going through how many hundreds of thousands are suffering through a life with no hope. Be their hope!

Please note I do not believe the responsibility for change is limited to our health care professionals/ our government, it is our responsibility to come prepared with all required information. We must document symptoms, look for patterns and possible triggers for our ailments. Challenge ourselves:

Are we eating the right foods?
Are we exercising?
Are we abusing our bodies in any fashion that would contribute to our illness?
What is our environment like? Is it clean? stressful?
Have you recently made any changes?

Awareness is key. Gather this information and present it to your doctor, have candid conversations, ask questions.

We must be realistic in our expectations of others, doctors do not know everything, they are human. If something they prescribed is not the answer speak up immediately, there are an infinite amount of variables and we cannot expect one person in a limited conversation to be able to heal something as complex as your body with certainty. Just as we can be a subject matter expert in our field we understand that information changes daily, that advances are always being made and although we do our best to interpret the knowledge based on education and experience we too can make mistakes.

Invest in your health, it is your responsibility to invest the time and effort it takes to heal. Research alternative treatments, ask for second opinions, do not put anything in your body before researching it. Not all drugs are bad and not all drugs are necessary. Make this decision for yourself. You have to deal with the consequences either way and the consequences can be costly so I repeat, invest in your health.

Be kind, do not take your frustrations of your illness out on anyone trying to help. You are going to suffer, embrace this, fighting it will only cause more pain. Accept help, we were not created to self sustain. Even the most successful people will agree they got to the top with a lot of hard work and a lot of support.

It shows strength to be vulnerable and in sickness vulnerability is inevitable. Accept that their are those who do not understand and their words and actions will hurt you. Forgive them, they may be battling something we cannot see and if they are not, if they are truly malicious, forgive them anyways. Holding on to anger only increases the difficulty of this journey and I can tell you from experience it's not worth it.




Friday, March 13, 2015

TED talk from Nadine Burke Harris


How fortunate am I stumble across this TED talk from Nadine Burke Harris to start my day?
This is such an inspiring sign of hope for change.




How childhood trauma affects health across a lifetime

I was never in an abusive household but I did live through adversity and her explanation of how the adrenal glands react as an adult in consequence to childhood experiences echoes my Dr.'s interpretation of what is happening with my body right now. I cannot wait for all this testing to be done!

Check out her bio @ Nadine Burke Harris - Bio

Thursday, March 12, 2015

Every heart has a story to tell, let me introduce mine

To my Core:

I'm writing this blog in hopes that you can understand that although my body is not well and I am struggling that I am happy. I'm writing this to give you the opportunity to understand my experience and in hopes that maybe I can influence yours. My journey has taught me to remain resilient when fairness and kindness are meek and to kindly push boundaries when you feel that something is not right. Life is so extraordinary if you develop the right approach. xo








On paper, I'm nothing fancy but I have an extraordinary desire to give life all I've got. Despite being diagnosed with dyslexia and dysgraphia at the ripe old age of 17after begging to be tested, I have a degree in finance with honors. How did I get through 12 years of school without being diagnosed? It was easy really, I moved almost every 2 years as a child and I was very outgoing and happy. An earlier test had diagnosed me with poor vision and social life that distracted me from completing my work aka I talked to much. I made up for not being able to understand what I was reading by asking my friends questions, copying their answers so I could complete my work on time and then going home and figuring things out for the exam. I had not read a complete novel until grade 8, it was the Outsiders , I remember begging my mom to let me stay home so for once I could finish the reading and complete my homework before I knew the answers. She allowed me after many tears and to this day I remember how proud I was.

Fast forward many years of fighting for the right to attend university without prejudice ( a few professors needed to understand that the accommodations provided were not a choice, it was in fact a legal matter of discrimination should they choose not to comply). I now work in IT as an analyst and I live in a beautiful tiny apartment with my wonderfully supportive boyfriend. To most I'm free spirited, polite, and soft spoken. To those who know me best I'm cheeky, opinionated and amusing. Internally I am struggling to define who I am, because all that defined me has recently been taken away by an unrecognized yet wickedly debilitating medical condition. I have very little energy, I can sleep an upwards of 16 hours, my muscles are week and I am prone to fainting. I've had to postpone most things I enjoy in life. I had to drop out of night classes (I was taking events management for fun), I can no longer play soccer or snowboard, run or do yoga, I can't drive long distances which has prevented me from visiting my friends and family. I've missed out on birthdays, baby showers.. a social life. I'm not able to stay up late so the Friday nights out with friends are just too exhausting.

My 20's have been a roller coaster. I've done more than I could have dreamed of by way of internal growth. I've accepted that I am in control of my life; I control my thoughts, I control my actions. This being said I can't help but to feel a little inadequate in my achievements at 29. I do not have wild stories of travel, I am not married, I don't own a home, I do not have children or a wonderful career. By today's standards I am pretty undistinguished. But I don't feel this way. I have worked so hard my whole life, I'm the real life version of the little train that could; I've consistently been a top performer at whatever I put my mind to.. my job, my studies, my volunteering. I've stayed out of trouble (for the most part) but that doesn't always produce the desired result because we're not all dealt the same hand.

I have been provided with a body full of opportunities beginning with the delayed diagnosis of a learning disability, progressing in to hypothyroidism compounded with anxiety and I am now being tested for adrenal fatigue among other possibilities. I have been struggling with my health for the better part of a decade and I'm here to publish my story in hopes that I can give hope to others going through something similar. Deep down I hope that this story of mine catches on and that it inspires our young doctors to question why they are not being taught more about the thyroid and adrenal glands. To inspire our researchers to put time, money and effort into something that has been recognised by other first world countries as a treatable illness.  I question why something so vital is provided so little consideration by our health services?  I may look healthy and through standard medical testing they cannot diagnose me, but they have acknowledging my symptoms as real and have tried to treat me with the little knowledge they have. The struggle and pain I go through almost every day is incomprehensible yet without spending a small fortune for a private doctor (whom I adore) there was no hope for healing. I'm lucky to have found her and to be able to afford her premium. But the fear behind the pain, the confusion, the hopelessness that I have felt deserves attention because I'm confident that I am not the only one going through this. And so here I am ready to share with you my intimate journey with hypothyroidism and the possibility of adrenal fatigue.



With Love- Cait