What I dealt with each day:
As many of you know, I already deal with Celiac Disease and a rare adrenal disorder. I have to take many different medications to function each day because without it I could not live! It took 3 years to get to the point I am at now but in the end I still knew something was not right. I always felt like there was more to the problem than just Celiac Disease and my adrenal disorder. If I decided to take a walk outside or spend a day at the beach, it would leave me pretty much crippled for the next couple days and unable to move. Simple tasks were hard for me to do and when I could do them it would ruin me for the rest of my week. Even though this happened every week I just put up with it. I never knew what it was like to be able to do a simple activity like going to the pool without having to deal with terrible consequences to my health. I dealt with this for a long time and eventually slowly progressed into making it worse. It got to the point where I couldn't walk or even get out of bed each day. When it got that bad I knew something else had to be wrong with me because that is just not normal. I already took many medications to help and was told by doctors that there should be nothing in my way that would keep me from going to school or even playing sports! Yet here I was, stuck in a bed, unable to walk, and being told I should be able to live a normal life.
What the problem was:
I've always thought there was something else on the side that I was dealing with. You could ask my mom, "what's the one thing Taylor says after every visit to the hospital?" And I guarantee her response would be, "I still think there is more than 1 wrong with me." For the past 3 years I've been saying this and I knew for a fact that there had to be something else! Finally, after all this time I'm proud to say I was right. About 2 months ago I got diagnosed with something called POTS which you may or may not of heard about before. POTS stands for Postural Orthostatic Tachycardia Syndrome and causes many different symptoms that makes it impossible to live a normal life without the right life changes. The problem was I wasn't treating POTS or taking medication to make it better! I was going through a normal day and trying to do normal tasks which may seem easy to most people, but they felt almost impossible to me. I was lucky to get diagnosed in the hospital and given a couple medications to help. Nadolol, which is a beta blocker, has been the biggest help to me and has helped with almost all my symptoms each day.
How I feel now:
The difference now compared to how I've felt the past 3 years is unbelievable. For the last couple years I honestly did not go one week without having an "off day." I would have to increase my meds that keep me functioning day to day only for me to still feel bad in the end. But now, I have tons of energy, can do activities without crashing the next day, and I can even work out! I've gone almost a full month without having a single bad day which is the first time for me. Before, I never had a full month where I felt healthy and well which leads me to believe I am finally starting to get back to normal. I'm finally "normal Taylor" and can do most of the things I would normally do. Even though I am pretty much better now, my lifestyle will always be different. I am still limited from a lot of different things. I currently can't go to school, play sports, fly on planes, or workout as much as I want to. Even though I still can't do the normal things teenagers do, I'm at least happy I can finally go a week without feeling awful. I'm very happy to say that POTS was the final answer to all my health problems and that I am now feeling much better each day!
Who I couldn't do it without:
There's so many people I could thank from the last 3 years but by far the person to thank the most is my mom. She never stopped advocating for me and she always did everything she could, day in and day out, to get answers. She never gave up from the day I first started getting symptoms. It's been an extremely long and difficult road but 3 years later, we finally got our answers. I am finally starting to improve for the first time ever and I know I am on the road to better health. She's been there for me through everything and there's no way I would be here today if it wasn't for my mom in my life. Another person I have to thank is my girlfriend, Breann! She came into my life earlier this year and has by far been the person who has made the biggest impact in my life. Even though she hasn't been in my life as long, she's made a bigger impact in my life recently than anyone else. She's helped me in so many ways by being supportive, giving me advice, and just being an amazing girlfriend. She dealt with POTS for over a year without the support of someone her age. I luckily have the support of someone else my age right now and I couldn't be happier that it's my loving and caring girlfriend. She's someone I'm able to talk to when I'm having a hard time...and someone I'm able to be myself around with when I want to have fun. I couldn't be more grateful to have her in my life and I'm thankful each day to have the support of her by my side!
Final thoughts:
This is something I've tried to get across a lot through my blog and is something I couldn't stress enough. If you ever feel like you are still dealing with some other health issue and do not feel 100% normal each day, then don't accept feeling this way! I got told countless times for years by doctors that there was nothing wrong with me and that I was a perfectly healthy kid. Just because a doctor says that does not mean it's true. You know your body best and if something is wrong then you should fight for it to get answers. You shouldn't have to accept feeling awful each day if you do like I did. Always advocate for yourself if something is wrong because you never know how much better you can feel if you just advocate for yourself in the end.
Did you go through a period of time with Celiac Disease where you just couldn't get answers for your diagnosis? Share your story below!
Oh My Gosh, I'm so happy that you are feeling better and didn't give up on finding an answer. I'm sorry it's one more thing but glad that you feel better. Way to be an advocate for youself and teach many others along the way!
ReplyDeleteThanks Tracy! It feels great to finally feel well again after so long. I'm glad to teach others along the way with what I learn if it helps benefit others.
ReplyDeleteI just happened upon your page and saw that you also have Celiac and POTS! I was diagnosed with both recently, too. But thankfully I only had to search for answers for 5 months, although it took many many drs and lots of out of pocket $$. Have you found that there is a link with POTS and Celiac disease?? So good to hear you are feeling better!
ReplyDeleteThank you! Glad you are able to feel better too! I have found that research shows being gluten-free helps POTS! I think there is also some research that shows a slight connection between Celiac Disease and POTS but I'm not entirely sure. Glad you could find my blog and be someone else I can relate too!
ReplyDelete