Month: December 2013

2013 was a blessing, a rough blessing indeed.

As I wrote this blog and then re-wrote it I realized just how hard it was for me to physically put it all into words.  The first time I wrote this I found myself typing out a month by month overview of my year medically and then read it and realized that wasn’t what I wanted to say at all. If I tried to sum 2013 up I guess you could say it really just wasn’t my year but you could also say it was a year full of little tiny miracles I will cherish forever. If I’ve learned anything this year it would be that “tomorrow is always a new day” and “be careful what you take for granted”. I can easily say that this time last year I NEVER expected I would be sitting here 1. typing a blog 2. with a chronic illness and 3. just how blessed I truly am. I’ve never been one to rely on others but this year taught me that family, friends, and most importantly a good relationship with God are such a necessity in being able to keep strong. I can’t say this year hasn’t been rough or that I haven’t wanted to give up because quite frankly I’d be one of the biggest liars. After being told for 3 months that I had an illness that was all in my brain, and a total of 6 months undiagnosed there most likely wasn’t a day when I wasn’t frustrated or felt defeated, but I truly believe those 3 things Family, Friends, and God are what kept me going. I have to say I’ve been blessed with so much this year but Dr. Moodley from the Cleveland Clinic has got to be one of the biggest blessings. When all other doctors failed to diagnose me with something, Dr.Moddley came along and turned things around. He gave my family and I hope and provided us with comfort that I did in fact have a chronic illness that wasn’t in my brain and was indeed real and fixable. To my family and I he is a true saint. I say it all the time that I believe prayers can do far more than any medicine will ever be able to so I must also include that I am blessed with all of you amazing people who have prayed for me and sent letters, care packages, etc. it means so much. I think the hardest part about writing this blog post is the realization that this is my life now, and it’s something I have to accept. For so long I tried to push it out of the way, pretend it didn’t exist, and run away from all the feelings that came along with it. I think thats what was the hardest, learning to accept it, to make the most out of it, and to keep on going. I value the most in people their ability to make the most out of what they have. 2013 wasn’t easy and I laugh at myself as I sit here typing this with tears running down my face. It wasn’t easy but I got through it and in the end that’s all that matters. Not necessarily how we accomplished it but rather that we made it through and learned something along the way. I will never be able to fully explain to you what this year was for me because it was so much; it was beautiful, it was heartbreaking, it was happy, it was sad, it was funny, it was lonely, it was loud, and it was quiet, but in the end it was a blessing. I say all the time I wouldn’t trade my illness for the world and at times I look myself in the mirror and think what are you talking about you would give anything to be healthy, but then I think again and realize I’m happy where I am. I’ve met some of the utmost strongest people, I’ve learned so many things about living, and I’ve realized what it meant to become strong.  POTS is something that will never define me but it’s something that will have always impacted me today. Thank you to absolutely everyone who has built me up, and been there for me this year I love and will forever be thankful for all of you. 

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Tears can’t be held in forever.

I cry when I think about the future because it scares me. I cry when I think about the past because it upsets me. If this was Gods plan to place this illness in my life I can learn to accept it but it’s often so debilitating as I have to stop and restrain myself. To sit back and say to yourself this isn’t the safest thing for me. If you know me then you know I’m a crazy, bubbly, energetic person. I’m an outgoing busy body that doesn’t like to stop. POTS however has changed a bit of my living. I haven’t blogged or shared my feelings lately about how I stand medical wise as I’ve tried to “push it out of the way” and ignore it as much as possible since it’s the holiday season. The Holiday Season however just hasn’t been the same for me. I absolutely love gift shopping for people. It’s my favorite part of Christmas. I love picking something out that’s just right for that person and then wrapping it all up. This year however was different as I found myself having to do mostly all of my shopping online because I no longer have the physical energy to do it. Same with wrapping I can only manage to do a few before I have to be done for the day. I went to see one of my beautiful friends dance in the nutcracker as I did last year as well but this year I found myself reading a text from her saying there were loud sounds in certain scenes that might cause me to pass out so to be prepared. I can’t help but be so thankful for all I have but I also can’t help but lose it at times. It’s so devistating when you do something as simple as throw your arms up in the air from excitement of getting shirts in that you’ve made for a fundraiser but then you find yourself lying on the ground barely able to talk with paramedics all around you a few minutes later. I’m so thankful I have such a wonderful family that takes care of me and worries so much but I absolutely hate seeing their faces as they sit next to me helpless in an ER room. It sucks so much that illnesses like this exist and I’m told that “with the right combination of medicines my symptoms can be controlled and that it’s all a chemistry”. I’m also told that people grow out of POTS as they get older and that it should provide me with comfort that there is hope but I can’t help but lose sight of it often as I struggle to keep up with everyone as we walk around downtown. I’m so thankful for the doctors that have helped me and provided me with the care and support I need, that give me the hope and paint the picture for better days ahead of me, however right now they just seem so far away.  I’m just 15 yet I rely on a handful of pills in the morning, afternoon, and night just to function properly. I look at people as they spring out of chairs and just quickly get up and my jaw drops as it’s something I used to take for granted, something so silly that we do so effortlessly yet it’s something I can’t even do now without ending up on the floor. I hate to complain but there’s so many thoughts that loom inside of my head that often overflow my mind. I’m just a 15 year old girl I barely know anything but I do hope that this isn’t all living is for me. I hope someday I can take a shower without having to sit the whole way through it and I hope someday an apple a day will help me keep the doctor away. I am forever thankful as I sit here and think back to all POTS has brought me this last year; unbreakably strong friendships with girls I will forever be thankful for, amazing doctors who have made living a bit easier for me, my absolutely wonderful family who have been by my side every step of the way, and a new outlook on life and just how precious it is. I don’t usually ever share my thoughts on how I feel like this, I like to keep it on the inside as I hate to burden others with my dysfunctional body but I’ve learned over the year that it’s important not to keep everything in. And after all, you non-potsies wouldn’t understand POTS if we weren’t here to explain the not so bright sides of it. So as I end this blog I thank absolutely every single one of you who has ever read it as it has over 3,000 views (truly amazing). I thank you for supporting me as without it I would be lost. We always think of illnesses as awful things, which they are but I still believe somewhere there’s some reason why they are placed in our lives, and although I might not have it figured out yet I do have hope that I someday will, and for that I will be forever thankful. I wish you all a holiday full of good health, friends, and family and I wish you the very best in the new year. 

Going home. For you and me.

There’s something about going home and although it’s not the same as it used to be going home makes me feel so free. There’s something about being where you were when you were little. Maybe it’s remembering what it was like being little; so new to the world we live in, so much to learn, just little. There’s something about going home. maybe home for you and me isn’t the same as it used to be but going home is so comforting. Maybe we don’t all have the home we wish to have. Maybe some of us come from a broken home. In the big picture though we all share a home, a home we call earth. We all often get so wrapped up in life (even myself) and we tend to forget the beauty of the home we all share. I find that the times in which I truly feel the most peace are those in which I spend exploring our home. There’s so much our home has to offer us. Years and decades worth of new adventures. Sometimes we tend to get wrapped up in the media and how our home is turning into a place many of us are ashamed to call our home and I think that’s where we tend to get lost. We spend all our time stressing, and getting angered, worrying what our future holds that we often forget to live in the moment. The here the now. We consume so much time and energy planning for our future to make sure it’s good that we often don’t even enjoy the now. What’s the point in preparing to be happy if you aren’t even happy now. But what even defines happy, nowadays happy is having all the riches. What ever happened to making the best out of what we have. And as I sit here laying a hammock with the slight breeze, looking over the lake, with Bon Iver playing in the background I can’t help but reflect and realize how much I take for granted on my home. I can’t help but not notice the ENDLESS beauty that surrounds our home and stop to realize that in the end this home is all we have, and if we don’t take care of it the beauty fades, and the reason to call ourselves so blessed tends to lose its value. 

Support The Potsies; A silent auction.

As you may or may not know over the past 2 months I’ve started a fundraiser called “Support the Potsies” it is a 100% all money earned gets donated fundraiser designed to raise money for further education and POTS research! If you’re new to my blog and have no knowledge whatsoever you can look through some of my previous posts to get “in the know”. To sum POTS up quickly though it is Postural Orthostatic Tachycardia Syndrome, a malfunction in the autonomic nervous system that is characterized by an increase in heart rate by 40 bpm or more with a change in position, most often going from the supine position to standing! Anyways now that you’re in the now and all caught up lets get to the fun stuff! LIke I said I’ve started this fundraiser and have been raising the money through selling shirts! However I made 6 different ornaments/wall decor that we have decided to silently auction off here! All of the money made through the silent auction will be donated to Dysautonomia International, where my shirt money is donated as well! To read more about them you can click on this link here: http://www.dysautonomiainternational.org The way this silent auction will work is by bidding in the comments! To do so you would do it like this for example if I wanted to bid $5 on the 2nd ornament you would leave a comment like this: Your Name, Ornament Number #, Bid Amount!Your comment must be posted on this blog entry or it will not count! You can check back to see if you’ve been out-bid/to place a new bid throughout the week! Bidding will close on Sunday, December 22nd at 7 pm Eastern Time. Thank you so much for all your help and BID ON! (:

In a world of BILLIONS you are just ONE.

I had 100 people in a room, and I blind folded each and every one of you and gave you a piece of food. I instructed you to eat it but didn’t tell you what you were eating and I then had you describe it to me. I listened to each and everyone of you as you all described it differently; maybe the concept was similar but the wording was different, did you stutter in between your description, were you quick to react, did you use multiple words or just one? In a world of BILLIONS you are just ONE. Your opinion is just 1 small percent of this whole earth. I once saw a quote that said something among the lines of “We all try to change the world but none of us ever think about changing ourselves”. I still myself am only beginning to understand what the author of it exactly means and quite frankly I will never know exactly what he/she meant. It’s crazy true to me though; we all plan to go to space, or be doctors, or invent the cure to cancer or something else marvelous but we never think about changing ourselves. Nowadays our generation is so swayed by society, we’re molded into this human being that waits in hour long lines the day after a holiday created to give thanks (even though it’s something we should do every second of our lives) so we can buy the newest version of a game in which you control a character who goes on a shooting spree and kills people. We spend hundreds of dollars on phones so we can keep in touch with our friends every minute of the day yet we don’t even know half of the person because all we care about is wether they liked our picture or not or if they saw so and so’s status update. We sit in a living room with our family and claim we’re bonding yet each of us is on a seperate social site/piece of technology and barely a word is spoken. It’s insane to me how we base our political beliefs and religious views off of what we hear on the news or read about in the paper but who even reads the paper anymore because most of us just read news on the internet and base our facts off of wiki pages, anyone can edit them but that’s okay because it’s on the internet and anything on the internet is true. What ever happened to the library and reading, now it’s just reading what Sam did with Sally. I’m guilty of probably all of these things yet I still try to change the world to support POTS. I haven’t even realized though that in order for me to change the world for POTS I have to first truly know myself and change myself for the better. If you asked me what I wanted to be right now and what I wanted to study in college I would tell you I wanted to be a “creative director at an ad agency” how do I know that? It sounds cool. Quite frankly I have no idea what I want to do, I am just beginning to understand myself as a person. I say all the time that this past year has made me realize so much but I will never even be able to begin to explain my experiences to you. I wish I had the chance to travel this world and talk to each and every one of you to hear what your life has thrown at you and what you’ve done with what you’ve been handed. I believe so strongly that we are all placed here on this earth for a reason; to influence others in some way but to do that I believe we must truly know ourselves first. Living in your body and truly Knowing your body are two completely different things. In a world of BILLIONS you are just ONE. ONE mind, ONE heart, ONE soul, ONE body. That’s all you are but that’s not all you have to be. 10 years from now when I’m doing who knows what with my life and I look back on my life who knows what I’ll see but I hope whatever it is I’m satisfied and I feel pleased with it. I’m just here living, in this body, on this earth, in this universe. I’m not living in your body and ultimately I can’t change you, or tell you what to do. I may not know anything at all, and anything I may know might be completely wrong. We only know what we’ve gone through and to go through anything is just an addition to your story as a person of who you are in this world. After all you are only ONE surrounded by BILLIONS.