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August 19, 2013

Advocate For Yourself...Who Else Will?

To be honest I'm not the type of person that likes to complain about how I feel. For most of my life I've dealt with some type of pain or problem and always kept it to myself. I never spoke up because I always felt like people would think I was just complaining. I began to think these pains I felt each day were normal and started to accept them too. If there's one thing I've learned over the past 6 years it's that speaking up about your health and how you feel each day is the only way you're ever going to feel better. You have to be your #1 advocate because no one else knows how you feel unless you tell them! That's one thing I really had to express with my visit to the hospital this time and is one thing that's literally saved my life multiple times in the past.

Why I went to the ER (8/12/13):
I've been dealing with a lot of problems for the last couple months that's only gotten worse over the last couple weeks. Celiac Disease is one thing that I thankfully have under control which took 3 years. My Adrenal Disorder is something that I'm still getting under control which has taken about 2 years. Both affect my life in a HUGE way as a 16 year old and have already made my life far from normal. One thing that I've had to realize is that my life and how I feel each day is not normal. I haven't had a week where I truly feel 100% back to myself even after getting diagnosed with my Adrenal Disorder. Over the past few weeks I got to the point where I couldn't walk, couldn't see right, had constant dizziness, irregular heart beats, and just tons of problems I could go on for. I knew I was at the point where I couldn't even function or get through a day without feeling like I was going to pass out. It finally took the convincing of my girlfriend to get me to go to the hospital. She made me realize that if I sit around and wait any longer to get better that I'm only going to get worse. I couldn't be more thankful she got me to go because what I learned in the hospital made me realize I couldn't of continued on without some help.


After my first 2 days in the hospital I began to feel misunderstood and not taken seriously. I stayed in the hospital for 4 days and of course got every test run possible. I had to explain each and every symptom countless times and explain what was wrong more times than I could count. After a while, most of my tests came back and appeared normal. I was beginning to think that I was going to be sent home once again without any answers. Luckily after so long, they found out that I had some problems with my heart and vitamin levels that I could hopefully begin to treat. The first thing discovered was that I was deficient in Vitamin D and B12 which is very common with people that have Celiac Disease. This was one thing I knew I could easily fix and was happy to just learn in the first place. After discovering this, I knew that it couldn't be the only problem! That's when they discovered that there were some rare irregularities with my heart. My heart rate would apparently beat too many times when it should beat once causing some of my symptoms. The main thing I got diagnosed with though was secondary POTS that was brought on by my Adrenal Disorder. Learning about this disorder and figuring out how to manage it is already proving to be hard enough. My girlfriend, Breann, who has been diagnosed with POTS for 1 year has already been a huge help to me! I can't thank her enough for all the support she has given me and all the advice she has given me as well. I know dealing with these problems is going to be hard. But I'm at least excited to know I can finally start feeling better and am blessed to know I have someone like Breann to support me along the way.

As much as I hate hospitals, for once in my life I actually felt like I wanted to go and needed to go if I was going to get better. I honestly didn't care what I was going to be diagnosed with because whatever it would be, I knew I would see it as a challenge. I knew I would just use it as something I can get better at with the reward being better health. I hated not being able to live a normal day and was at the point where I honestly just wanted answers. I didn't care what the answer would be or how long it would take. I just wanted to get better and I knew that wouldn't happen unless I advocated for myself. I'll admit, being in the hospital sucked. It's cold, you never get left alone, you hardly get any sleep, it just sucks. But if there's one thing I learned, it's that it's much better to go through a couple crappy days in the hospital than to feel crappy each day for the rest of your life.

Me with the Tampa Bay Ray's Umpires and Mascot!



While I was at the hospital for a couple days, I actually had a pretty cool experience while I was there. I got a visit from the Tampa Bay Ray's umpires and actually got on the news for it too! It was very cool and unexpected since obviously you don't get to experience something like that every day. The picture above was used in the news story that you can read, here! It doesn't really have to do with advocating about your health but I thought it would be cool to share!

Advocating isn't always easy...especially not for me:
Managing my health is one of the hardest things I have to deal with each day. Advocating for myself and accepting that I do need to get help is something I struggle with on a day to day basis as well. I try and power through everything and be a trooper when I know that it's only going to make me worse. I've done this in the past and I still do it now. This time though I got to the point where I couldn't walk or function without feeling like I was going to pass out. Luckily I have such a supporting family and girlfriend that's always been there for me along the way. As understanding as they are, they still make me realize that speaking up about my health instead of keeping it to myself is really important. It's not easy for me to speak up about how I feel because I feel like if I'm still conscious and functioning, then I don't have anything to speak up about at all. (Also keep in mind that I'm pretty stubborn..lol my girlfriend says that all the time)

If I could learn anything from this experience it's that you have to be your #1 advocate and you have to speak up about how you feel no matter what the situation may be. Don't worry about what others will think because no one will think you're complaining unless you actually are! Keeping these things from doctors, friends, or even family members can only lead to terrible consequences. I really learned from my hospital visit this time around how important it is to speak up about your health. If I would of waited any longer, who knows what would of happened! For me, speaking up about how I feel isn't easy at all. No matter how hard it is, I have to be my #1 advocate and continue to advocate for myself! The same should always go for you no matter what situation it is. If you don't advocate for yourself while you're dinning out, talking to a friend, or speaking with a doctor, who else will?

How do you handle your health? Do you advocate it and let others know about how you feel? Or do you keep it to yourself and stay pretty reserved about it?

8 comments:

Pamela DuBois said...

I advocate loudly! Doctors have failed me so I am my own practitioner for the most part and I treat myself with vitamins and supplements as well as remaining gluten free, plus I do what I can to teach others.

Jennifer Stohr said...

I advocate constantly - for myself and my children. I research CONSTANTLY, and bring my findings to my doc and my daughter's allergist - who take it seriously and often add to my research and share it with other patients. Two of my three kids have been diagnosed celiac, my oldest is observed intolerant. I've never been tested, but have all of the nutrient deficiencies, most severe symptoms, etc. to even trace amounts or inhaling crumbs/cracker dust. We all also have asthma, eczema, and life threatening allergies to foods, stings, latex, meds, chemicals, and environmental allergens.... If I don't advocate for us (and also my husband), the world is an even more scary place.

Taylor Miller said...

That's definitely worth advocating for! When I was younger my mom would always advocate for my health too because no one else could. If she didn't, the world would of definitely been a lot scarier of a place for me and I probably would of never gotten diagnosed with Celiac Disease when I did in the first place. Thanks for commenting btw!

Anonymous said...

Great blog, Taylor! I agree, of course. I grew up with a very strong minded mother who was also a nurse and my father had serious medical issues. I guess I grew up exposed to my mother pushing and probing to figure out solutions to my Dad's and all of our issues. It was my Mom's self-advocacy that found her cancer when doctors couldn't. (Unfortunately, it didn't save her.)
So anyway, I have grown up getting the message that you have to speak up for yourself. I must admit that it took me until I was about 30 to finally feel comfortable speaking up for myself. BUT my self-advocacy also found my medical conditions. And I keep on advocating for myself, my kids and anyone who needs the help!

Taylor Miller said...

That's great that you realized how important it is to advocate for yourself! I'm sorry about your mother though..at least you learned from her too how import self avocation is. It will probably take me a while to feel completely comfortable with self advocating for myself but it is definitely something we can all work at. Thanks for commenting!

Casey Cromwell said...

Thank you so much for this post, Taylor, and it couldn't have come at a better time for me. Celiac disease has been whipping my butt lately so I have to do some medical procedures a few days before leaving for college. Reading this post made me feel grateful for what I have and hopeful to get your same positive spin on life! Sometimes it's hard to put your health first and be advocate, but I know it will be worth it in the end. Hope you're feeling better and good luck! :)

Angie said...

Thank you so very much for sharing your story. I have been a research hound as well and catch grief from it from those around me some. I know that if I am as informed as I can be I have better chances for better health. I have gluten ataxia and intolerance, mitral valve prolapse with regurge and pvc's. I have been experiencing a lot of what you are talking about too. Proud of you, someone so young who is grabbing the bull by the horns and looking forward. You are well on your way to a healthier existence. Awesome Job!:)

Taylor Miller said...

You're welcome! Glad to share my story and offer some positive influence to others Hopefully both of you start to feel better too and figure out some things to feel better. Thanks for commenting!

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