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July 5, 2013

My Struggle With An Adrenal Disorder As A Teenager

Out of all the things I write about and express on my blog, the thing I talk about the least is my Adrenal Disorder. I know that my blog is called GlutenAway and is meant to be about the gluten-free lifestyle, but I feel like maybe you could get to learn a little more about me and my lifestyle each day as a 16 year old. I'll admit that most of the things I'll explain aren't easy and probably will seem hard to deal with. The fact that I'm physically unable to go to school, play sports, or go to a friends house any time I want may seem like my life wouldn't be enjoyable as a teenager. But really I've just learned to change my priorities over time and still find a way to be truly happy by the end of each day. Hopefully I can give you a better idea of my life as a 16 year old with a rare type of Adrenal Disorder and show you what it's like to live in my shoes each day.

Me in the Hospital When I Got
Diagnosed 10/21/11
Some of you may know what my adrenal disorder is from reading my story and other adrenal posts, and some of you may have no clue. Either way it's all very hard to explain and can really only be explained best if you saw how I acted each day. My adrenal gland which produces the hormones we need, to live and function each day, does not produce any what so ever. These hormones regulate stress, both mental and physical, and it's what keeps you living when you go under stress. Without them all your bodily functions would start to shut down which would eventually lead you to death. I'm actually the first person discovered to have 100% non working adrenals which makes my condition and disorder very rare. You may be wondering how am I alive today or how did I even discover I had this disorder in the first place. Really I learned this all when I was 14 years old and pretty much on my death bed. The doctors told me I would of had only 3 months to live and would die at age 14 which was something most people wouldn't take lightly, especially as a 14 year old.

I used to be a normal kid. I could go outside, play sports, hang with friends, go to school, and eat pretty much anything a teenager could eat. But now my life has changed 100% where even the simplest tasks can be difficult. I am physically unable to go to school because of my disorder or be around friends which I loved so much. I can't ever play sports again or do any activities which I very much missed. I can't eat sugar of any kind (natural or refined) and I pay the price the hard way when I do. But really out of all this I think the most annoying thing is that I can't even go to the beach which I can physically see out my window when I wake up every morning. All this has proven to be way to stressful on my body and there really is no way I could live happily if I tried to do these things, no matter how much I want to. A lot of this I've just learned to accept but it really just makes me realize how different my life is from most teenagers and how hard it is for most people to understand. 

My Medicine I Take
Each thing I do comes with a challenge and even the simplest things can be made hard because of my disorder. To keep myself alive and functioning I have to take many different forms of medicine multiple times a day. There's never really a specific amount I take because I have to judge myself based on how I feel every hour. Any physical or mental stress could mean I need to take more medicine if I want to function normally that day. If I don't take the right amount then it can affect my vision, memory, muscle movements, heart rate, breathing, and pretty much everything you can think of. I always wondered, "Why can't I just take high doses of medicine each day?" But apparently if I take too much of my medicine it can cause many problems later on in life and cause some of my vital organs to fail. So finding the right amount of medicine to take every day is something I have to take seriously. I mean sure it's a lot to think that one dosage of medicine can be so critical to how my day will play out, but hey I've been doing it for 2 years so by now it's just every day life for me!

To be honest I think one of the hardest parts I have to deal with is my memory. I feel like almost all my memory is gone from when I was younger and that I've only been living a few years of my life. When my friends would bring up funny moments from our past, I would be left there not having a clue what they are talking about. I had a girlfriend which I dated for 9 months..I can hardly tell you 1 moment we spent together because I truly cannot remember. Trying to write this post was a struggle because I couldn't remember if I've had my disorder for 2 years or 3 years. (I find that funny though) Even now if I'm under stress one day I most likely will not remember what happened the next. This is one of the hardest things to deal with but like everything else, I get through it and don't let it keep me down.

Lastly the thing that by far bothers me the most is how I appear to others when I'm going through symptoms of my disorder. 90% of the time I'm not "normal Taylor" and people don't see who I really am. Not being able to talk correctly or appearing awkward in some social situations because I can't mentally comprehend what someone says is something that happens all the time with me. We all get brain fog and feel like idiots sometimes with celiac disease. But to me when i'm talking to someone, I feel like an idiot almost the entire time! Ha, it's just hard to deal with when meeting new people, and just imagine what it's like with all the judgmental teenagers in high school. I don't care what people think about me and how I appear to them, especially people in high school. But I do care about giving the wrong impression of who I really am to people I would really like to know.

A Healthier Me
Everyday I wake up and have 1 main goal set in my head. To get my health better. I've had this one goal for 2 years now and will probably have it for the next 2 years until I actually do get better. I don't let one disorder and celiac disease define who I am and ruin my whole life. Sure it changes the course of where I'd like to go in life, but hey it's been pretty good to me so far. I know without celiac disease or my disorder that I would not at all be the person I am today. I never look a day back and wish my life was different or that I didn't deal with all the crazy stuff I do because that's who I am! I believe everything happens for a reason, and to actually be alive today compared to 2 years ago when I was told I'd only have 3 months to live..that's enough reason for me. 

I'm told all the time, "You must have grieving and crying sessions with all your dealing with!" or "I can't imagine how difficult it is to deal with what you are going through at your age!" Honestly, it is hard to deal with and I know it's not normal compared to what most teenagers do. I realize I will never be able to drink alcohol, I can never go to actual school, I can never play sports and do normal things with my friends. But does this bother me? Of course it does. To the point where I decide to just give up and mope around about it? Not at all. I've learned over the past 3 years that setting your own priorities straight and figuring out what's most important in your life is everything. Playing football and hanging out with my friends used to be 1 of my top priorities, but that changed. Now I set new priorities to take each day to get better with my health and to try and change the lives of others. I'll say even though it seems crazy to do at 16 years old, I truly am happy by the end of each day no matter how different my life may be from others. It's a constant struggle, it's an every day battle, but I don't at all let any of this define who I am and I never will.

9 comments:

cubicalpanic said...

I commend your strength, humour and tenacity in dealing with this day in and day out...you are mature beyond your years! Keep up the great blog and always smile...even when having a brain fade with someone, it confuses them! :)

Taylor Miller said...

Ha, thank you very much. I appreciate it and I guess confusing them is a good way to look at it!

Anonymous said...

Hi Taylor, thanks for sharing your story. I am so sorry for the ways you suffer and can not imagine how difficult it is. You are an incredible human being to have your positive attitude, tenacity to get better and still at the end of the day desire to help make things better for others. While I am not able to relate completely, I can empathize. I have lived with Type 1 diabetes (autoimmune) since I was 11. Our pancreas makes zero insulin and we are completely dependent on insulin. We too have to try to guess what our day will be like and everything changes how much insulin we need- stress, the weather, the amount of sleep we got, how much we eat, what we eat, if we are healthy or sick, if we exercise and how much, how long and what kind, etc. Make the wrong decision and it can be life or death for us as well. I also live with multiple severe food sensitivities - most likely Celiac but not officially diagnosed. Along with a few other autoimmune conditions I also struggle with adrenal insufficiency/fatigue. Nothing near as serious as yours of course but I know what it is like to not have adrenal glands working as they should. Although I look well to others, my life is anything but normal. I have not been given drugs to help control it, but use herbs, rest, and limiting my stress and schedule. I write a blog too, Diabetes Light: My holistic journey to health & it's how I give back and help others. I truly am sorry. Please know you are not alone in managing multiple conditions that are so life-changing. I'd love to have you join the Facebook community for my blog if you are interested - just look up "Diabetes Light" on FB and you'll find it. Take care and keep up the good work. You are an inspiration and a true light. Blessings.
-Cynthia (www.diabeteslight.com) *from my iPad, it is not letting me comment w/name and URL..

jade said...

Hi miller ... Hope u get better very soon .. I'm 31 and one year back I got diagnosed for celiac. I know even after strict compliance its really hard to deal with this situation. It really affect you mentally and physically. So, try to spend your life with your close ones and even make strangers your friends. Laughter is the best medicine, so try to be happy always. Hope for everyone's good health. God bless all of us.

Taylor Miller said...

Thank you both! Really appreciate the support and kind words. I'll also check out your blog Cynthia! Thanks again!

ARA said...

I read your story and I applaud the way you are dealing with the changes in your life. With your attitude I am sure you will regain your health.

I am a mother of a 10 year old who is Non Celiac Gluten Sensitive and he is having the hardest time staying on the diet. He has delayed reactions to the gluten. I have showed him you blog and we have read your story. So thank you for sharing your story.

Anita

Taylor Miller said...

Thanks so much for the kind words, Anita! Dealing with being gluten-free at such a young age is really hard to do but honestly I think adapting to the lifestyle earlier rather than later is better. I'm sure he's having a hard time now but over time it will definitely get better. Plus your son has so much more of his life to live and be healthy since he got diagnosed so young. I take it one day at a time and each day does get a little better. Best of luck to you and your son! If you ever need anything or have any questions feel free to message me anytime. Thanks for commenting!

james said...

Hi friends .. I have a query for everyone - you may feel it very stupid. I had very smooth and straight hair in my childhood. when I was only 12 it started to become very curly and ugly. And from that day to the age of 30 I'm still having the same problem with my hairs. Only recently I have been diagnosed with celiac. Is all this related to celiac? Anyone have the similar story to share or any suggestion to improve my hair? - thanks in advance.

Anonymous said...

Wow your story is so inspiring. I too have celiac and adrenal disease. I do make cortisol but I don't make aldosterone so I'm on Florinef for it. It's difficult to manage and there are many struggles. One thing that confuses me is that when I went on forums for Cushings, something else I had which actually mysteriously went away (I think it was a miracle healing) there were people who had both adrenals removed who lived pretty normal lives. They had BLA- bilaterial adrenalectomy or something like that. I hope that your docs can find a way to get you outside and moving again. Thanks so much for this great candy list!

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