July 30, 2012

Recovering From My Adrenal Disorder

My Mom and I!
Living with this rare type of Adrenal Disorder is something I have to manage and deal with every hour of every day. Looking back there are so many things in life I took for granted before I found out I had this disorder. Being able to breath, being able to see, being able to move, being able have your heart beat steady, and most of all being able to remember memories. These were all things that were almost taken away from me in those 3 months and I never realized how a broken gland so small can take all that away. Most people that have an Adrenal Disorder have their gland still working but not working well enough to live normally, this is called an Adrenal Deficiency. But with me, my gland is completely dead and doesn't work at all, which makes it physically impossible to live without medicine. My disorder doesn't officially have a name since I am the first discovered to have it in this form. But the only reason I am somewhat glad to be the first is that I know I have a chance to help the 2nd.

How life has changed since discovering I have an Adrenal Disorder
Since I was diagnosed with this type of disorder my life has greatly improved on how I feel every day. I do have more energy but still find myself unable to do the things most normal teens can do. There are many things I have to do every day to get and stay healthy. I have to wake up at 6:00 AM every day to take medicine and have to take many different types of medicines throughout the day. There are many foods that interact with how I feel each day and foods I have to limit along with being on a gluten and dairy free diet. Often times my adrenal levels can be thrown off from the simplest things. It usually takes days for me to recover and I am usually unable to communicate, move, or go anywhere outside the house. These are just some of the things I deal with every day and am still learning to manage. Through all of this I have always found a way to be positive, keep fighting, and never give up. Although this disorder is very hard to live with I feel like it has definitely made me who I am today. Overcoming this obstacle has made me feel like I can overcome anything. All I want to do is help others so they don't have to go through what I did with either Celiac or this disorder. I couldn't be more grateful and happy to be alive today and I'm very happy that I could share this other half of my story with you. Thanks for reading and I hope this helped you learn a little more about me!

Learn about how Celiac Disease impacts your Adrenal Gland each day and learn more about my disorder Here!

16 comments:

  1. Very interesting... I came here from Gluten Dude after reading your kind comments for the girl with celiac. I'm an adult with celiac and adrenal insufficiency (and also had a terrible time getting either diagnosed--doctors!). I just wanted to say that you have a great blog here! And that I sympathize with your problems. It's been hard enough dealing with such things as an adult. I can't imagine if I'd gone through this while still in high school!

    You must've felt horrible! (People have asked me before how I know when my cortisol level is too low. I say to imagine the worst sick you've ever felt--it's worse than that.) And you had absolutely no adrenal function? Wow. I can't believe they kept saying there was nothing wrong.

    Thanks for sharing your story--it is indeed helpful to read about others going through similar things.

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  2. I'm glad my story was something that you could find relatable. I have rarely come across anyone with celiac disease and with an adrenal insufficiency as well. I think only 2 others actually. And I can completely relate to having a terrible doctors experience. I got told forever that I was completely fine and healthy but got diagnosed with this disorder by a miracle. It obviously proved that I was not healthy at all. If you want to contact me sometime I'd be happy to share some things I've learned about ways to help adrenal health.

    millert123123@yahoo.com

    I'm sure you've learned some things too, so maybe we could help each other out? Email me anytime if you'd like and I appreciate you commenting!

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  3. Thanks so much for sharing your story - I and both of my daughters (age 9 and 12) have Celiacs. We also have dairy and starch intolerances - and adrenal fatigue, which has changed our lives. We live much more slowly now, but happily ;) If you ever want some recipes, you can find a lot of ours at www.dunebythesea.com (always trying to share info ;)) mimosagrace@gmail.com

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  4. Thanks a bunch Heidi! Will definitely check out your recipes and appreciate you sharing the info. Hope you and both of your daughters stay healthy and well!

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  5. I rather enjoyed this long, truthful and touching story of yours, Taylor. And I believe the same thing happened to me (involving coeliac). I'm 17, but my symptoms just randomly came on one day when I was almost 13. It's been exactly 5 years, if not a little more, and I'm still getting symptoms. My mum always used to say that it was all perfectly normal. I realised it was not normal about a year ago. However, in the past 4 months, more symptoms are showing now, and all symptoms are more intense.
    I did have a blood test for coeliac. Despite coming back negative, I don't believe a word of it. I'm almost certain I'm coeliac. One of the reasons I know this is because I did a gluten free diet for one day (it's really hard haha) but even just for one day, I was getting much fewer symptoms and the pain was eased, and I felt better, and more lively too!

    As for your Adrenal disorder, as life threatening as it is, as you said, you were lucky to have had it discovered when you did. I can't imagine what living with Adrenal must be like, but as for coeliac, I know exactly what it is like to not be able to eat barely any foods. And just that is bad enough.
    We bless you Taylor, you've gone through a lot, much more than most others your age. To realise you're a very generous and brave human being, posting your stories to help others who may have coeliac and Adrenal, it puts a smile on my face :)
    Thanks a lot for sharing!
    I hope life is much better for you now. At least you accept you have these and live with them, that's the main thing, as well as still being alive and healthy in order to be reading this comment! :)
    Good luck to you Taylor, and god bless!
    All the best :)

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  6. You are an amazing person. It is so inspiring how you celebrate your diagnoses because they gave you information critical to your survival. I'm very impressed that you not only live a "normal" life with your positive outlook, but you go beyond normal by reaching out to help others. May you be blessed with a long, healthy and happy life!

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  7. Thank you Michelle! I'm just glad to use my story to possibly inspire others and use my disorder to possibly help others as well. Thanks for the kind words:)

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  8. What an inspiration you are to so many of all ages! So glad I found your blog while looking for information on being gluten free. Sounds like God has great plans for your life...look how He has already used you!

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  9. Thanks Kim! I definitely feel blessed with all I have even in the situation I was put in. I make the most of every day and I feel like helping others with my story is one way I can do that. Thanks for commenting!

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  10. How did you get it diagnosed, what type of doctor did you go to?

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  11. I got diagnosed by accident actually. I got some blood work done while in the hospital for a week do to GI issues when I had to get a colonoscopy and endoscopy. I had many terrible symptoms and was actually told I would only have 2 months to live. An endocrinologist is the type of doctor that diagnosed me though. They deal with blood disorders and many of the glands in our body like thyroid and adrenal. I would really recommend seeing one if you think you have adrenal issues! Hope that helped!

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  12. I really like your candor and your blog! Searching for gluten free recipes as I am gluten intolerant, I saw your adrenal connection and it floored me. I have a disease called Multiple Endocrine Neoplasia Type 2a. I've had both adrenals removed, thyroid and parathyroid as well. Keep up the good work Taylor, I've been adrenal gland free for 12 years now, and my mother for 35 years. It's not always easy, but worth it. God bless.

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  13. You are awesome Taylor! I am starting a gluten free diet to heal my left foot. I woke up one day and it's been swollen for six months.
    Celina from Canada

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  14. Does your adrenal disease have a name? My daughter was diagnosed with celiac 3 years ago and just recently i was tested again for it...going gluten free has helped so much but I have struggled daily for months witb adrenal issues. Steroids daily..timed at certain times of day, but now they seem to not work. I have been to sooooo many drs this year fir everyone to tell me nothing wrong. Slight adrenal insufficiency. One endocrinologist said after 6 months of testing. We are now driving 3 hrs to see a new dr but don't know how to get them to test more.. Do you have any suggestions? Addisons, cushings etc.. I totally understand the being sick for days pain and the most painful aches..memory issues and nit able to get my words out. As an active mom of 3 (used to be active)Thanks for any advice

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  15. Hi Taylor, I just read your story. Have you thought about seeing a a Holistic doctor (all natural) like you I saw countless specialist just to be put on more drugs. Until I was led to my current doctor. By the time I saw her my organs were shutting down, she nursed me back to health naturally.my friends and family say I look amazing! I have not taking any prescription or over the counter drugs the 3 years I've been with her.

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  16. Hi Taylor, I just read your story. Have you thought about seeing a a Holistic doctor (all natural) like you I saw countless specialist just to be put on more drugs. Until I was led to my current doctor. By the time I saw her my organs were shutting down, she nursed me back to health naturally.my friends and family say I look amazing! I have not taking any prescription or over the counter drugs the 3 years I've been with her.

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