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September 16, 2013

Living With Illnesses As Teenagers (A Boyfriend & Girlfriend's Story)



As most of you know, I'm 17 years old, have Celiac Disease, an adrenal disorder, and many other diseases and disorders. Most people would look at me as a normal teenager and would never guess anything is wrong. I know I'm not normal and have a lot of things wrong with me, but at the end of the day I'm a pretty positive guy! A lot of what I do is not on my own and couldn't be done without the support of my girlfriend, Breann, who also has Celiac Disease and many other illnesses like me. It's crazy to think that at this age we found each other and both share the same illnesses. But honestly if I got to choose, I wouldn't ask to deal with it any other way! In this post my girlfriend and I share the illnesses we deal with together and what many people wouldn't know about us from what they see on the outside.


What illnesses we deal with together:
Just last month I got diagnosed with a condition called POTS (Postural Orthostatic Tachycardia Syndrome) and was lucky enough to have someone in my life who's been dealing with it as well. Breann and I have been dating since April but she had POTS long before we started dating! On the outside we would probably seem like a normal couple (even though we are far from it..lol). But truly on the inside, it's a complete mess. Even the simplest things are activities we can't do! Because of POTS we are currently unable be able to ride roller coasters or fly on airplanes. Because of Celiac Disease we will never be able to enjoy gluten-filled foods or drink alcohol on a date. (which isn't a big deal to us for now) Right now, we aren't really able to do the normal things most normal couples would do but that doesn't really matter! To everyone else we look like a normal couple but we will always have illnesses that any normal person on the outside wouldn't notice. We both deal with the same illnesses and are luckily able to go through it together each day. I'll admit, in the past I always worried about how I would manage in a relationship since I obviously can't do a lot of the things a "normal" girlfriend would want to do. But since meeting Breann my whole life has turned around and I no longer have to worry about those things again! At the end of the day I'm just very fortunate to have met Breann who can understand my illnesses and look past it to see who I truly am on the inside.


My illnesses as a teenager:
For a lot of you that follow my blog, you probably already know about some of the illnesses I deal with. I won't share too much on my illnesses since you know a lot about me already. But my girlfriend, Breann, was happy to share a lot more about her story since you don't know too much about her! As a teenager I deal with a lot of different illnesses. I have more than just one which a lot of you may or may not know. Obviously Celiac Disease is the first one I deal with and is one that hasn't actually been that big of a challenge to me. Most of us share this one since we all can't eat gluten and know how it feels to deal with this throughout our daily life. Unlike most teenagers, I actually enjoy the way I eat and would probably choose to eat gluten-free even if I didn't have too! Many people my age wouldn't know I'm gluten-free because it's almost impossible to notice from the outside perspective. As hard as most people make gluten-free living out to be, I honestly find it to be the least of my problems with all the illnesses I deal with but definitely the one I'm most passionate about!

Another illness I have that is also hard to see from the outside is a rare type of adrenal disorder I got diagnosed with 3 years ago. I always look like a normal teen and I hardly ever express how I feel in the inside. Even through my blog I don't express it that much which I need to do more. I'll admit, what I feel each day is much more different compared to the average teen and much more difficult to manage too. I'm unable to ever have caffeine, alcohol, or even sugar. It's extremely easy for me to do something wrong that would set off a laundry list of symptoms. Even laying out in the sun or having a sugary snack can cause me to have extreme fatigue, brain fog, migraines, and many other problems. I'm physically unable to attend normal school which is something I really miss. I especially miss playing football and Lacrosse which was something I really loved. It's easy to think on the outside that I'd be able to play sports or attend normal school but I physically cannot because of my illnesses. The simplest tasks can stress my body which I know a lot of people would never know from what they see on the outside. My adrenal disorder is definitely something that has been very difficult for me to deal with over the years. But luckily I have gotten much better with it in time and am happy to say I'm almost fully recovered from it by now.

Dealing with Celiac Disease and my Adrenal Disorder have all been things I've been able to overcome. But now there is something new I have to try and overcome which I know is going to be a hard challenge. My recent POTS diagnosis has made me unable to do a lot of the things a normal teenager can do. Going to school and playing sports is one thing I will never be able to do again. Right now even getting out of bed in the morning has been a challenge because I just don't have the energy or don't feel well enough. A lot of it has to do with my new diagnosis of POTS which I know will get better! Every illness I deal with has been something I've been able to overcome so I know this will be something I can overcome too. Things like walking or even getting up and sitting down have become a difficult challenge for me. I've been unable to workout because it gives me the possibility of passing out or being unable to walk. These are all difficult things I'm dealing with right now but I know with the right attitude they will get better in time. Luckily I know all the stuff I do because my girlfriend has POTS as well. 3 years later, she is almost 100% better! I wouldn't at all be where I am today if it wasn't for her and I can't express enough how much it means to have the support of her each day!


My girlfriend's illnesses as a teenager:
Hi! My name is Breann, you might of heard about me from my boyfriend, Taylor. I wanted to share with you guys my story of Hyper POTS, Celiac Disease, and how I deal with it as a teenager. I first got diagnosed with Hyper POTS on February 14th, 2012 and it's been an extremely rough road since. You may not know much about Hyper POTS or regular POTS but I can help explain it more! Both types of POTS all have to do with your heart. With regular POTS it causes you to have low blood pressure and a low heart rate. But with Hyper POTS it causes you to have high blood pressure and tachycardia which makes it much more rare. The symptoms with this disorder can go on and on since every single POTS patient is different. Some of the symptoms include brain fog, dizziness, blurred vision, loss of balance, cold hands and feet where they turn purple from not getting enough blood flow, loss of feeling in the arms and legs, fluttering in your chest, heart palpitations, etc… With Hyper POTS I had some vitamin deficiencies but got it fixed with a simple blood test and supplements which eventually helped! Supposedly going gluten-free is supposed to help with POTS symptoms. But for me, it didn't do anything at all.



With Hyper POTS, it also brings on many other disorders. One of them would be a sleeping disorder I got diagnosed with called restless leg syndrome. What it means is that it feels like I have bugs crawling up my legs but I was luckily able to take medicine for it! I began to realize didn't feel like I needed the medicine anymore so I slowly took myself off it. Ever since then I haven’t had a sleeping disorder and it has luckily gotten 100% better! Something else I do deal with though is a bone tumor in my left calf. It's located on my growth plate and when I started to grow, the tumor grew as well. As soon as I stopped growing though, it stopped too. Luckily it is a benign tumor and I don’t have to get it removed unless it causes pain or continues to grow. 











To sum up my POTS story, I was homebound for my Freshman and Sophomore year for a couple of months because I completely lost my balance and had to be in a wheelchair. I eventually got my balance back and am now back to normal school! The whole reason I lost my balance though is because I have something called a conversion disorder. With this disorder any little stress my body gets causes my body to lose it's balance.
 Compared to most teens I have to do a lot of things differently to keep myself healthy. One of those would be working out daily and making it apart of my daily routine. With POTS, the number one treatment is working out since it helps get the blood pumping throughout the whole body. I work out every single day but mainly in the mornings. It helps a lot by getting the blood in your body pumping early in the morning allowing you to feel better for the rest of the day. That's one thing I will have to do for life that I will never be able to stop. Another thing I can't have is caffeine. A lot of people with POTS can’t have any caffeine because it gives them palpitations like it does with me. Every POTS patient is different though so everyone just has to experiment and see what works for them. As hard as this has been, I am so much better than I was a year ago! When I was going through my diagnosis, I turned to God and he turned my whole life around. I see things in a whole new light now and am so blessed and thankful every single day that I am were I am now. I know through all this if it is something I can overcome, you can overcome anything too.


Even though Hyper POTS is one of the hardest things I have deal with, it isn't the only thing I deal with as a teenager. I got diagnosed with Celiac Disease at the end of November of 2012. I was constantly getting sick, I couldn't keep anything down, and really I was just miserable for a month. After feeling this way for a while the doctors ran a blood test and all of my levels came back extremely high for Celiac Disease. They did an upper endoscopy and the test confirmed I had celiac after all. Since I was already gluten-free for a little bit with POTS, it really wasn't that hard for me to start back up again! The doctors suggested I see a nutritionist to get help and they did help a lot! She talked about cross contamination and just being safe when going out to eat. It was a BIG change but I started to feel a whole lot better within a few weeks. Since being gluten-free I have been very good about not getting glutened. Over the past year I have only gotten glutened twice and really this whole experience has been a lot easier than I thought it was going to be in the first place!


How I met Taylor:
Now I’m going to brag a little bit about how I met Taylor and how we deal with this together. :) I met Taylor through his blog back in April and emailed him to tell him more about my story since we both had Celiac. At first we thought we would just be friends, but since then it has turned into so much more because of our health conditions and all the things we have in common. :) We have been dating since April 2013 and I am head over heels for him. :) I’m really glad we both met since we have so much to relate with Celiac Disease and now POTS! (Which is crazy!) It's nice when we go out to eat since we are both gluten-free and can choose something safe to eat we without having to worry. We get to cook and bake a lot of gluten-free things together which just makes it very easy for us since we are both gluten-free! Through all this I can say that I think it's very important to have someone to relate to whether it be friends or family. Either way it's really helpful and it feels great to know by the end of each day that you're not alone. Thank ya'll so much for reading my post and I’m always here if you want to talk about POTS or Celiac Disease! Take care!

-Breann :)


My final thoughts:
Even though Breann and I both deal with so much stuff as teenagers, we never really let our illnesses get in the way! In the end we are still teenagers, we are still a couple, and we still have so much of our life to live and possibly spend together. We both know how important it is now to have someone in our life to relate to in some way. Dealing with Celiac Disease or any other illness isn't an easy thing to do on your own! That's why having support whether it be a friend, family member, boyfriend or girlfriend, whatever it may be, is something you should always have no matter what the situation may be:)


That's Breann and I's story of how we live with our illnesses as teenagers..feel free to share yours and what you deal with each day too!

13 comments:

Kim T said...

Wow ... you both are such an inspiration, my daughter is celiac and struggles staying gluten free, actually she doesn't really even try so we deal with many of the symptoms, but nothing to the degree that the two of you do. I commend you for not only working hard to stay healthy/taking care of yourselves with such passion, but for taking the time to share your story to help others ... what a great testimony!

Taylor Miller said...

Thank you! We try our best because we both know we only have 1 body so we might as well make the most of what we have and try to get better. Glad to share and thanks for commenting!

Anonymous said...

You two are an inspiration to many others that may suffer from similar disorders. I have severe health issues with yeast intolerance and gluten and I just found out about 2 years ago at 53 years old. I have suffered from so many health issues ranging from lymphocytic colitis to severe migraines to fibromyalgia etc. So many issues stem from Celiac's & Candida Albicans disease's. I had been misdiagnosed for over 30+ years. As of today, I stay completely away from dairy, and I am working really hard trying to take sugar totally out of my diet. Each day is a new challenge but I try to keep positive. Reading your story was very inspiring. Thank you.

Taylor Miller said...

Glad we could share our story and inspire you! Sorry to hear you've dealt with so many issues for so long. I'm sure that's been really difficult but that's good to hear you are diagnosed now. Thanks for commenting!

Mostly teaching... said...

Taylor, I've written to you before to tell you what an inspiration I think you are for teens. My son (who is 18) has also dealt with his teen-aged "stuff" by equipping himself with knowledge.

I'm 52, but when plunged back into the dating scene, realized that my eating was very off-putting to many people. I met the "love of my life" a year ago at a bar gathering to watch a NE football game. As usual, everyone bought tons of appetizers to share. When he noticed I wasn't eating, I mentioned that I wasn't able to eat gluten, and said something about being weird. He said, "Well, it's certainly not weird if eating that way makes you healthy." Needless to say, he's been supportive of my eating, and never, ever complains about the way we eat.

Just wanted you to know that you are an inspiration for people of all ages.

Taylor Miller said...

That's so cool to hear that even at the age you are that you can find someone who understands! I think that's encouraging to a lot of people as well that may feel like they are alone. I'm glad our story could inspire you and I hope it continues to inspire many others too. Thanks for commenting and sharing your story!

SilvermoonWanderer said...

You guys are awesome! So amazing to see such maturity in two so young........but illness can do that to you. I am glad you have each other to lean on. It's hard going it alone. Great post!

Taylor Miller said...

Thank you! Glad you liked it and we were both very happy to share. :)

Anonymous said...

Thanks for sharing all this information. Your positive outlook and empowerment are inspiring.

I am also a teacher and I have to admit, I really enjoy reading your writing. It is authentic, genuine and your youthful voice really shines through in your literary style. Plus you post some delish recipes. That's how I first became a follower and what keeps me coming back for more.

Keep up the excellent job! We are counting on you!

Taylor Miller said...

Thank you for the kind comments! That means a lot to hear from a teacher! I really appreciate it:)

Nay said...

Thank you for sharing. I have a 15 yr old daughter who was diagnosed with celiacs a year ago. She started having other symptoms and was dianosed with POTS in August of 2013. She had severe migraines for months then in November stated having abdominal pain. We thought it was all Celiacs related recently whem she started having fibromyalgia symptoms as well. They got so bad she became bed ridden. I understand that this is symptomatic of POTS as well. I guess my question is have you experienced this level of pain and have you tried acupuncture for any of your pain or what has worked for you.

Sarah said...

It seems like there is some slight confusion between POTS and hyperadrenic POTS. POTS is defined as an increase of at least 30 beats per minute within 10 minutes of standing or an increase to 120 beats per minute in the hyperadrenic form. Both types exhibit an increased heart rate. "Regular POTS" isn't a low heart rate. Neurally Mediated Hypotension is the low blood pressure aspect that can go along with POTS. I have Ehlers Danlos Syndrome Hypermobility Type, POTS, NMH, gluten intolerance (but not Celiac), nightshade intolerance, food allergies associated with latex allergy, all of the digestive system issues that can go along with EDS and POTS, trigeminal neuralgia, glossopharyngeal neuralgia, migraines, anemia, low C3 and low C4 levels (but not Lupus), and a lot of other medical conditions. I first started exhibiting symptoms when I was 18 on August 2, 2004. Some people do "grow out" of POTS and I certainly hope that is the case for both of you, but for some of us, we will be plagued for life. I recently moved to Charleston, SC and I am currently seeing doctors at Medical University of South Carolina, but I have been all over the eastern seaboard seeing doctors over the past almost 10 years. mine is from chemical exposure in the Marine Corps. I wish both of you the best!

Luis said...

This is a touching story. Can I get advice? My girlfriend has pots, how can I help?

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