I think the most important thing when dealing with difficult things is being able to stay positive. I’ve learned over time that it’s one of the most absolute hardest things to do. So I’ve decided that it’s time for me to tell you a story. Prepare yourself for something inspirational (just kidding). Okay so there’s this girl and she’s 15. She has these two “enemies” One of them is 7 years old, blue, and eats only sodium, and drinks only water (we’ll call him Nicholas). The other one is 9 months old, green, and loves to jump (we’ll call him Patrick). So basically this girl goes on this strenuous,stressful, exhausting battle. She fights these 2 enemies every single day and not a minute goes by when she doesn’t forget about them, unless of course she is with her amazing group of support! (her family and friends) Throughout this journey she realizes lots of things. 1. Tomorrow is ALWAYS a new day. 2. No matter how low you feel at times there’s always someone there for you. 3. If you can make it through the day that’s all that matters. 4. NEVER NEVER lose hope. Let’s just say these two monsters have been a constant nuisance to this girl. They’ve stopped her from doing many things and thrown things her way she never thought she could EVER handle! These two monsters are my Chronic Illnesses Nicholas-NCS and Patrick-P.O.T.S and the girl is me! Now I can’t say I don’t have my days because that would be a total lie. I definitely do have my days where I just have to cry, and as much as I wish I could just give up and quit sometimes I realize that I can’t. Because if I did so I would be letting Nicholas and Patrick win the battle and that’s something that will NEVER happen. I have learned that the most important thing I can do right now is take everyday as a new one, wake up with a smile on my face, and just breathe. I never thought I’d get something so stressful and exhausting thrown my way but I guess I can only make the best of it. I realize that I’m going to have to rely on other people for a while (something I HATE to do!) But I’m going to have to. I’ve also learned that there are many other things I’m going to have to adjust to but that’s just a part of life. So like usual I must end this blog and story with a thank you too all of you. I appreciate all of your time and the fact that this blog has over 1,500 views! To me that’s pretty amazing.
The Spoon Theory. I’m a Spoonie. Oh and a big THANK YOU!
So one of my fellow “Spoonies” named Daisy finally explained the Spoon Theory to me the other day and I can’t wait to share it with all of you so maybe you are able to understand what it’s like. I’m totally baffled by it as I have been asked what it’s like to have NCS or P.O.T.S many times and quite honestly I never know what to say other than “eh it’s no fun”. So check out the Spoon Theory, it’s kind of long but trust me IT’S WORTH THE READ! I will link it somewhere on this blog post. Next is my giant great big THANK YOU!!! To all of you; wether you’ve just taken the time to read my blog or if you’ve sat by me in the hospital. It means so much to me, I know for a fact that without all of the support from everyone there’s absolutely no way I would be where I am now; On the road to recovery. I wish I could take all the time to personally list all of your names out on this but it would take me hours to do so because I have such an amazing support system. SO THANK YOU ALL SO MUCH!!! I can’t tell you enough how much I appreciate and love all of you!!! (: Have a fabulous weekend.
The title of this blog most definitely fits how I’ve been feeling lately. I’m not sure where I left off exactly at the last blog post so I will do my best to pick up where I left off. So most likely last time you read I had just gotten out of the hospital after my crazy experience well I ended up back in the hospital (Riley this time) the very next day. So that would have been on Saturday, I had a pretty major seizure so the E.M.T’s were called and they transported me to Riley. I stayed at Riley until Monday and was released just in time to go to the Bruno Mars concert (something I had tickets to since May, my birthday). While at Riley they did the basic work up (EEG, EKG, Potassium check, etc.). My Potassium was up to 3.6 since they had given me the Potassium pills the night before when it was 3.2. We were able to come to the conclusion that we are 90% sure that these aren’t epileptic seizures. WOOHOO! That’s great news because seizure medicine is something we don’t want. So all was good the concert was very fun I went with my sister, mom, and best friend, however we have figured out that the strobes and I are not best friends (lol). They made me pass out 3 times, but it was still such a blast!!! Tuesday was a good day, but it had a couple episodes, one where my mom could literally feel my heart racing. I think it was just a little bit of a struggle because I was pretty drained from the hospital. Today wasn’t much of a good day though…….I passed out at lunch at school and hit my head and then went into a seizure. The school called the paramedics and they took me back to Riley. ): However I got to leave 5ish hours later. They checked my Potassium and it had dropped back down again to 3.3! The doctors at Riley talked to my doctor at Cleveland and we’ve decided to finally start my new medicine. We’re hoping for the best with this and that it will do its job!!! Now that I’ve caught you up I can get to the point of my blog today! I wanted to introduce you all to someone who has recently become an important person in my life! His name is Nathan!!! Nathan, is a cancer survivor and has been my inspiration for the past couple of months. Nathan has been an amazing friend to me and more than helpful. It’s tough ti understand what someone is feeling if you haven’t been in their shoes. Now granted Nathan and I haven’t gone through the same thing but he’s definitely been encouraging and makes me laugh. So that’s Nathan and I’m glad you could all meet him. (; I think it’s important that everyone has a good support system through their journey of life and I am more than lucky to have met so many amazing people that understand things. I also am so thankful for all of my friends and family because I’m pretty sure if it weren’t for them I’d be in a full body cast by now! 😛 Last but not least if you’re interested in helpful things for dysautonomia or just wanting to learn more about it check out one of my fellow Potsie Angela’s blog! It’s http://www.thatonesickkid.wordpress.com
I’m not vocal about my condition because I want attention I’m vocal about it because it needs awareness. While in Cleveland I learned that my doctor there (Dr.Moodley) published something on how to deal with syncope patients in the E.R. He distributed these to Emergency Rooms everywhere. Out of all 5 E.R’s I’ve ever been to NONE of them have ever followed what Dr. Moodley has published. Dr. Moodley is one of the most experienced WORLD WIDE in syncope so if any one know what to do best it’s him. So what I’m trying to say is this blog is not here for attention it’s here for awareness and to inform. I think it’s extremely important that P.O.T.S and NCS are something that get more realized and people become aware of because out of the 5 hospitals I went to before Cleveland NONE of them were able to diagnose me properly and they should have been. Yes, don’t get me wrong P.O.T.S and NCS are not anywhere near as extreme as Cancer but they are still pretty serious and do alter every minute of your life when they aren’t under control. NOW TO LAST NIGHT. I must first mention I didn’t pass out at all on Thursday!!!! 😀 (big accomplishment) Yesterday I passed out only once at the end of the day until late last night. I was walking out of the movie theatre with Caleb and I fell face forward and smacked my forehead on the concrete. (I got a lovely bruise and scrape) I guess I was out for a while because then I started seizing and was in and out of it for 15 minutes….. They called 911 because I wasn’t very responsive at all. They put me on a backboard and in a neck collar and shipped me off to IU Saxony. (Huge thanks to them because they’ve been the most amazing E.R. here in Indiana.) When they got me there they drew a bunch of labs and did a C.A.T. Scan and some X-Rays of my neck. Those came back negative which was really good. However, my potassium was low AGAIN so they made me take 2 GIANT potassium pills. They were all more than kind and I appreciate it SOOO much. Last night was pretty scary. I did seize when I got home and then again this morning but hopefully after I finish eating this gross banana my day will be A-Okay 😛
Well I haven’t blogged in a little bit of time. Hmmm well I have a low potassium level and it’s been a week since it was last checked so we’re going to get it tested again later today! I’ve still been passing out multiple times a day. Today was my last day weening me off of my beta blocker so it will be interesting to see how that goes. I also have been wearing my compression socks and taking 2 salt tablets in the morning and 2 at night. I also have been drinking 3 LITERS of water a day with gatorades throughout the day. Hopefully all of these things will start to work. I’ve begun to form a little online community of friends that are going through the same thing as me and let me tell you it’s such a helpful thing to know someone else understands what it feels like. Apparently we’re called “potsies” :p School starts tomorrow so it will be interesting to see how this upcoming week goes, hopefully it will go well. I guess I shall inform you when we find my potassium levels!
Gaaahhh this is probably the most exciting moment of my life. For the longest time people have looked at my mom and I like we are absolutely crazy. After countless emergency trips and a handful of is diagnoses, an absolutely amazing doctor has been able to diagnose me. I have Postural Orthostatic Tachycardia Syndrome (P.O.T.S) I am still beginning to understand myself what this is but I will try my very best to explain it to my understanding. “Postural Orthostatic Tachycardia Syndrome is a condition of dysautonomia, to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate called tachycardia.” “In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs.” “POTS patients use about three times more energy to stand than a healthy person.” As I myself begin to understand this moreI will share my knowledge with you. So I guess this isn’t NCS after all. 😛 A HUGE thank you to everyone at Cleveland Clinic because this wouldn’t be possible without their help. And a huge Thank You to all of you for your support and prayers.
I’m lost in my thoughts after another 2 hour Neurology appointment. Yesterday I saw cardiology and he said the same thing he’s always said…. “Your heart looks good, you need to be doing things every normal 15 year old would do……” I guess that kind of put a smile on my face after all I’ve spent the last 3 and a half weeks of my summer completely surrounded by my mom and by completely surrounded I mean COMPLETELY SURROUNDED. He cleared me to get back to cheerleading which is exciting but of course that’s only one doctor out of the whole handful that has cleared me. I had my MRI yesterday as well, however it hasn’t been read yet so we don’t know wether there is a Chiari Malformation or not, granted it is not likely that there will be one but I guess you never know with me. I had another Neurology appointment with a new doctor today. Keep in mind that last Friday when I had a neurology appointment it was questioned wether I had a Chiari Malformation that was his “idea”. Todays Neurology appointment brought up Conversion disorder. Something I’ve only heard of once and thought for sure there was no possibility it had anything to do with me. If you don’t know what Conversion disorder is I guess it could be best described as a condition where a person experiences blindness, paralysis, or other neurologic symptoms that can’t be explained by medical evaluation. People are at risk for Conversion disorder if they have another illness. (I guess this could make sense because I also have NCS.) From what I understood there really is no outstanding “Cure” or “Medication” for Conversion disorder, you just have to live the most normal life as possible. I’m not exactly sure what I think about this as a diagnosis. I’ve never met anyone with this and since there is no medical diagnosis to REALLY CONFIRM one has it I’m just extremely confused. I guess until we see what Cleveland clinic has to say it will all be up in the air. I’m just thoroughly confused and don’t know what to think as this definitely wasn’t my intention to spend my summer in hospitals and doctors offices. I feel as if they all look at me like I’m completely insane, but they’re the doctors after all. Well I guess I shall keep on praying and hope for the best in the next week or so.
Tomorrow is a huge day for me…..I have an MRI to determine if I have a Chiari Malformation. A Chiari Malformation is a structural defect in the cerebellum, the part of the brain that controls balance. I have an MRI to look at this and rule it out as a possibility, however if the MRI comes back and shows a Chiari Malformation I will need brain surgery. I have a cardio appointment at 12 and my MRI at 3 tomorrow. On Monday I am going to the Cleveland Clinic to hopefully put an end to this and finally get some answers. I had an amazing Neuro appointment last week with a doctor I absolutely loved. At this point I’m just hoping something shows up somewhere so that tis can be stopped. So yep it all just depends on tomorrow. I could update you on everything else but it’s all the same. I pass out and some days I don’t all my symptoms are the same and it’s all still happening.