An Open Letter to the Teacher that Destroyed My Confidence

Hi y'all!

So I haven't blogged in a few weeks because I've been so busy, but I'm baaaack! As many of you know, I have participated in theatre ever since I've been in high school. Acting is a way for me to creatively express myself all while having a great time! I've also made some amazing memories in the last three years on the stage of Thomson High School, from being the Coroner in "The Wizard of Oz", to being in my tower as Rapunzel in "Into The Woods". I've also met many friends that will be a part of my life for years to come.

However, this year is different. I have made the decision to not participate. Not because of health concerns, but because of the director. (For confidentiality reasons - I'm not using her name)

Dear Teacher that Destroyed my Confidence, 

For the last three years, you've watched me give my best effort, bring a positive attitude, and successfully participate in multiple shows all while battling many health issues. You've continually bashed me by saying things like "You cannot do this." or "You won't fit into this cast." all because I have a VISUAL IMPAIRMENT. You've left me feeling disappointed when I'm constantly proving that I CAN do something, and you still inform me that it's impossible. You've pushed me around the stage, shoving me into a spot, assuming I can't see well enough to walk by myself. But, you've never given me a chance. I was destined to fail, because of your unkind words and actions. You've yelled in my face, asking me why I'm here, when all I want to do is be included. Is that too much to ask? You've put me down in front of the entire cast, just to embarrass me. You've told me I was "useless". So, I've had enough.

You always say "this year's our year", but I'm tired of the false hope. I don't want any part of a group that makes me feel excluded and I certainly don't want to be in a place where I am told that I "don't fit in". I don't have to be shouted at for having water, sitting down, or needing a restroom. I don't want to be afraid to ask for help anymore. I want to go back to truly believing in myself, and feeling like I can do anything. I quit. No more being blamed for things I have no control over, no more useless tears, and no more being told I'm not worth the effort, because I am worth it. No more limiting me. 

Lastly, if you're reading this, I just want to say thank you. (Stay with me here, I'm not crazy). Thank you for showing me that there will be obstacles and challenges in this world, but there's always a way to overcome it. Thank you for teaching me to do what's best for me. Thank you for making me dig down deep in myself and realize that I am important, and that I mean something. Without this horrible experience, I would've never truly understood my worth. However, before you bring someone down because of a disability, imagine yourself in their shoes. What would you do if someone told you "you're not worth it"? I honestly hope no other child has to feel the way I did, when all they want is to be a part of the group.

Sincerely,

Johna

Thanks so much everyone, I hope this post was inspiring. Remember, no matter what anyone's ever said to you, you are worth it, and I love you. Please find it in you to love yourself as much as I love you. Don't let anyone destroy your confidence! 

FIGHT LIKE A SPOONIE!

xoxo,

Johna 

Diagnose Me

Hi all!

Yes, I know this title is cliché and it was sort of stolen from a television show but it's relevant I promise! As a spoonie, I've come to the realization that chronic illnesses and their diagnoses are a lot like Pringles, "you can't have just one". When the diagnoses begin to pile up, it is quite easy to become overwhelmed and begin to lose hope. However, a diagnosis is the first step to treatment, and potentially getting better (at least partially). I will share with you all my recent experience with strange symptoms, a new diagnosis, and the effect it had my course of treatment for several conditions.

It started one day at school. I grabbed my "Heart of Darkness" novel from my bookbag as usual, but something was different. I scanned over the pages frantically, because I couldn't read one single word. I looked for Mrs. Murphey, my teacher, who came to my aid. With tears streaming down my cheeks, I explained to her that I couldn't see anything except light. She stayed with me and took me to the assistant principal's office. I immediately got an appointment with my optometrist, with the help of my vision teacher, for that afternoon. He was at a loss. He made a rush appointment with a retina specialist -- WORST experience ever. When I saw him the next day, he was beyond rude. He proceeded to tell me that I was "faking" and "seeking attention" just because I stated how helpful my school was being. He shouted for me to "hold my eyes still" which is impossible for me since I have nystagmus (involuntary movement of the eyes). I left the office broken-hearted.

Soon after, I made an appointment at Emory with their ophthalmology clinic. This was a much more pleasant experience, not still not very informative. I was told I'd have to "get used to" my episodes of blindness, which wasn't an option for me. I refused to think this was going to be a part of my life forever.  Maybe that's selfish, or maybe that's what led me to my diagnosis.

I tried to cope as best as I could while waiting for my next appointment. I attended the region One-Act competition with no vision, which wouldn't have been possible without my amazing director, Mrs. R, as well as each of my castmates, who literally led me around everywhere that day. They all made my senior One-Act unforgettable, still I longed to have vision.

As my appointment approached, semester exams came and went. I had to take each one orally, which was a challenge (especially with Calculus)! However, Mrs. Crocker, now Mrs. Murray :), was exceptional! She traced each graph on my palm and slowly went over each problem with me. I somehow managed to pull a 101% on that exam. How? I'll never know. Ok, the moment you're all waiting for... my appointment: It was life-changing. I walked into the exam room, nervous as usual. The doctor, Dr. Morgan - movement specialist, walked in and got my history. He looked me over, turned to his students, and said "You know what's wrong? It's okay, you'll never guess. Septo-Optic Dysplasia". Septo-Optic Dysplasia. Once he explained it, everything began to make sense. The optic nerve underdevelopment, repetitive movements, obsessive compulsive behavior, and the weirdest piece of the puzzle - my missing septum pellucidium, something every other doctor has ignored. I cried tears of joy right in that exam room. He said "You don't want anything for those movements do you? Please don't say yes just because people say mean things to you, because if people make fun of you, screw them. You're you and you're perfect." He even got his student (who looked strangely similar to Peeta Mellark) to videotape me for a national conference because my condition is so rare. I am not scheduled with neurosurgery to begin my journey of treating several conditions that coincide with Septo-Optic Dysplasia.

I am finally getting treatment for the vision loss, as well as my constant migraines and craniocervical instability. Also, he is finally investigating the hydrocephalus and Chiari Malformation issue, which will hopefully set me up for a pain-free (sort-of) future. I am no longer able to participate in any sports but I can still be on stage. I have to constantly monitor my vision with bi-monthly appointments to my specialist, but I am so full of hope. Hope for a semi-normal college experience in spite of my other illnesses, hope for a future, and hope for getting better. I am eternally grateful that Dr. Morgan took the time to get to know my case and didn't make assumptions or pass me on to another doctor. Even with this diagnosis, I am me, and I am perfect. Well, not exactly...

Thanks for reading and remember --

FIGHT LIKE A SPOONIE!

xoxo,

Johna

Laws of Life

Hi everyone!




Wow... I've been MIA for a while (I'm so sorry)! I hope you're all doing well. I just finished writing an essay for the Georgia Laws of Life competition, and I finally got up the courage to write about my illnesses. I thought the topic really needed to be discussed, and the essay turned out a LOT better than I expected, so I thought I'd post it here for you lovelies to read if you would like. I really hope you




Basically, you can write about anything for Laws of Life, but you must include a quote that serves as the "law of life" that taught you a lesson about a certain experience in your life. You'll find my quote at the end of the first paragraph :-) Feel free to share the link to this post but the essay itself CANNOT be copied! Here it is:

Diagnosis: POTS

            It was three in the morning, and I was lying in an unwelcoming hospital bed with my tachycardic heartbeat pulsating through my entire body. I had a migraine like I’ve never felt before. The hospital staff ran a myriad of tests, but nothing they could do abated the immense pain that I was experiencing in my head. As the nurse slowly pushed the next course of medicines into my vein, I immediately know something was quite wrong. My chest became tight, with the weight of one thousand elephants simultaneously bearing down on me. Monitors began screaming at me, I felt a rush of pain, then I was completely consumed by darkness.  My heart had stopped. When I awakened moments later, an incalculable amount of doctors, nurses, and emergency technicians were at my bedside, staring at me with judging eyes. One of them informed my grandmother that I was suffering from nothing more than hypochondria, or another mental illness, and that I would be fine with therapy. As I was being discharged, I was overwhelmed by sadness. I began sobbing; I couldn’t understand why no one believed me. Something was wrong and I just wanted to be normal. Suddenly, I felt a tap on my shoulder. When I turned, an elderly woman handed me a folded up piece of paper, and walked away without uttering a single syllable. The paper read: “‘When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure’ –Peter Marshall”.  This woman had indefinitely altered my life, without her even realizing it.

            In the weeks following my emergency room visit, I went to a countless number of appointments with what seemed like every doctor in the area. My case was passed on to so many doctors, but to no avail. I was told that nothing was wrong with me, or that I should change my diet and exercise more often. Each medical professional treated me as if I was exaggerating the severity of my health problems, and told me that I would just have to cope with my headaches. However, one neurologist uncovered one piece of the puzzle that would eventually lead me to a diagnosis. She checked my blood pressure as I lied, sat, and stood. She then explained that I was orthostatic, but that I could solve that by increasing my water intake.

            Each treatment the doctors suggested failed, and my health only seemed to decline. Even drastically increasing my fluid intake did nothing to quiet my continual migraine. Eventually, I was referred to a neurologist who performs Botox injections in the base of the skull and forehead to alleviate chronic headaches. While I was there for my visit, he took one look at my records and informed me that I have a rare condition called Postural Orthostatic Tachycardia Syndrome (POTS), a malfunction of the nervous system that affects the heart. I was immediately scheduled for a consult with a cardiologist as well as a rheumatologist. I endured three days of testing, numerous IVs, and a total of twenty separate blood draws. Soon after, new diagnoses were thrust upon me almost daily. Postural Orthostatic Tachycardia Syndrome was ravaging every system in my body, and I was told that there was currently no treatment for this disease.

            Presently, over a year after my initial diagnosis, I am being treated for an excess of ten chronic illnesses, including Ehlers-Danlos Syndrome, Gastroparesis, and Craniocervical Instability. My digestive muscle activity has slowed to a crawl, my joints are unstable, and I occasionally lose my sight due to my illnesses. Overall, I am very accepting of my limitations, and I live a happy life, but periodically I wonder why I had to become ill, and why I cannot participate in all the things other teenagers can. Whenever these thoughts cross my mind, I think back to the woman who tapped me on the shoulder in the hospital, and I thank God for her. That simple scrap of notebook paper and the quote scribbled on it make the thought of enduring another day of pain so much more manageable.

I really hope you enjoyed reading my essay - thank you for reading and supporting me! I'd love to hear your thoughts, just click the "add comment" button.


FIGHT LIKE A SPOONIE!
xoxo, Johna

Let's Talk About IC

Hey everyone!

Long time no post. Sorry about that! I've been so busy with doctors appointments, school starting (senior year, whoop whoop), and many other things but I'm back! Anyway, this post is a serious one, and it's also a topic that's really important to me. 

Interstitial Cystitis. Interstitial Cystitis (also called IC or PBS) is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild discomfort to severe pain. Symptoms of IC include:

• Pain in your pelvis or between the vagina and anus in women or between the scrotum and anus in men (perineum).
• Chronic pelvic pain.
• A persistent, urgent need to urinate.
• Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60 times a day.
• Pain or discomfort while the bladder fills and relief after urinating.
• Pain during sexual intercourse.

Many have not heard of IC, and that makes me quite sad. However, a truly amazing fighter (@rainbow_girl_x on Instagram) has started an awareness campaign for IC, which I am happily participating in. If you have time, and an Instagram, you should definitely check out her posts and help her out. 

(From @rainbow_girl_x Instagram)

Here's my personal experience with Interstitial Cystitis: (also on Instagram at @chronically.amazing) 

"All right guys, let's talk about Interstitial Cystitis (IC), or Bladder Pain Syndrome (BPS). I have this illness, but I rarely discuss it due to the "social conventions" that are broken by openly talking about bladder issues. I was diagnosed a year ago, my mom 8, and my grandmother some years before that. We all suffered in silence for so long, but it's time to speak out. @rainbow_girl_x's #rainbowICawarenesscampaign has finally given me the courage to talk about IC, and we all need to team up to bring awareness to this painful, incurable disease. This card pictured is a medical alert card that I, along with many others with IC, carry in order to gain restroom access. If you have IC (or if you just want to help raise awareness) feel free to screenshot this picture and repost! I would like for as many people to see this card, so that someone who really needs it can see this. Thank you all so much for all the support, and for helping give me the courage to share this. Also, check out @rainbow_girl_x's page for more awareness posts on this topic! There are prizes and shout outs available for some posts during IC awareness month. For details check out @rainbow_girl_x'd page! Fight like a girl! #IC #ICawareness #InterstitialCystitis #PBS 💖"  

Here's the card I was referring to in my post: 

If you have IC, and would like to share your story please email me at johnawright98@gmail.com. I would love to publish it here as well as on Instagram. Also, if you have any questions, you can email me, dm me on Instagram, or leave a comment here. I'll be sure to get back to you as soon as I can. Thank you all so much for the endless support! 

FIGHT LIKE A SPOONIE!

xoxo,

Johna

Migraine 101

Hi all!

A headache or migraine is a common symptom that comes along with many chronic illnesses, and it is possibly one of the most painful and annoying symptoms. Also, it seems like headaches/migraines are the hardest darn things to get rid of!! I have several illnesses that cause migraine, and it has been very hard to get a doctor to listen and diagnose these headaches.

I got diagnosed with POTS, and my first neurologist told me that all my headache/migraine symptoms are caused by this. Then, he tried Botox which he KNEW would work. Guess what? It didn't. Then he said "ok well you have chronic migraines". If you know me, you also know this answer wasn't good enough. I got diagnosed with Ehlers-Danlos soon after, and I was told that could also cause headaches... Well, now we are looking into Craniocervical Instability as a result of EDS, then could explain the headaches also. On top of all this, I have been told I might have Chiari Malformation, another probable cause for the headaches! And the worst thing? They're all treated differently. It sort of leaves me with this stupid constant headache, and nothing to do to relieve it. Well, over the past few years, since a doctor won't even attempt to relieve the pain, I've come up with a few ways to help, and I have compiled them in a nice little list for you all! 

1.) Heating pads are your friend. I have found that a heating pad set on low heat across my head for 20 minutes at a time can help lessen the pain drastically.

2.) Ice pack are your friend too. An ice pack across my forehead for 10 minutes at a time helps also! Try heat (see #1) then ice, alternating back and forth. 

3.) Lay flat on the floor, with your legs up the wall. This returns blood to the brain, thus relieving migraine symptoms for many people. 

4.) The Migraine Rescue Cocktail. Drink a Coca-Cola (not diet), take 3 Motrin, and take a Benadryl. I know you've probably heard this one, but it does help! 

5.) Take an Epsom salt bath with some lavendar and peppermint essential oils. I used to hate when people said "try this oil, it will cure blah blah blah." True, it won't "cure" you, but it really can lessen your headache pain. 

6.) Gently massage the temples and the space in between your thumb/forefinger. This is a pressure point exercise. It relieves some of the common symptoms of migraine: head pain, nausea, and vertigo. 

7.) Sit with an ice pack on the back of your neck, & put your feet in lukewarm water. This is like #1 and #2 on steroids, in case they didn't work for you. 

8.) Keep well hydrated. Dehydration can cause a load of symptoms, including migraine. Many people with chronic illnesses suffer from chronic dehydration, so it is important to always have a drink nearby when you're feeling bad! If you have electrolyte tablets such as Nuun, this would be even better. 

9.) Turn off ALL electronics and rest! You may be thinking "well duh", but many people still want to check snapchat, or post a selfie with a poked out pouty lip, saying "worst. migraine. ever" Well, maybe if you'd rest, you would feel some relief sooner. 

10.) If all this fails, which sometimes it will, and the ER is your only option: 

a.) Don't be tempted by the ER #hospitalglam selfie. (See #9). If a nurse or doctor sees you on your phone while complaining of a migraine, they will immediately jump to the conclusion that you are a "drug seeker", even though that's not true! 

b.) Ask for IV fluids (especially if you're a potsie!) instead of immediately asking for pain meds. They will jump to the same conclusions mentioned in step a. Plus, hydration is key (see #8). 

c.) Rate your pain accordingly. If your pain is much worse than normal, don't feel bad using an 8 or 9. But, if you go to the ER frequently for headaches/migraines, be sure not to go straight for a 10 out of 10 every time. Save your 10 for when you feel as if you're dying or if you're bleeding from some sort of orifice. 

d.) Don't let them treat you as if you're not in pain. If this happens, try and explain what illnesses you may have that cause migraines. Also, tell them what you've tried before coming to the ER. Lastly, try to be as specific as you can about the pain. (Where does it hurt? What kind of pain is it?) This can help the ER staff diagnose you properly if you don't know what's causing the pain, or to give you the proper pain relief. If you've tried all this, and the ER staff still isn't treating you properly, leave. You are better off resting at home in your own bed than sitting there arguing with a stubborn doctor/nurse who has no intent of helping you. 

I hope all this has helped you! If you have any questions, feel free to click that "add comment" button and ask away. Also, I'm on Instagram as @chronically.amazing if you would like to dm me any questions/comments!

FIGHT LIKE A SPOONIE!

xoxo,

Johna

Ups and Downs of Chronic Illness

Hi everybody! I'm so sorry for the radio silence over the last week or so. I've honestly felt so horrible that I didn't have any energy (or spoons) to spare to type a post. But now I'm slightly better! This time last week, & up until yesterday, I was on continuous oxygen due to severe POTS and Myasthenia Gravis complications. I couldn't even breathe well enough to talk in a full voice for about a day. It was so scary, but the spoonie community really helped me to power through it. I really appreciate and love each one of you! 

My sister came over to visit me, but she's a real go-getter (what ten year old isn't?) and I felt TERRIBLE about myself because j couldn't do anything with her. However, she was so mature about everything and played games with me in bed. It was actually a really fun time, and it took my mind off the pain. 

One of the things I hate most about chronic illness is the not-knowing. I feel like I'm walking aimlessly through the dark, and I can't find the light. Sometimes, I even feel as if I'm walking in circles. I always ask myself, "am I doing the right thing?" "Should I give up on doctors?" "Do I really need to research this & be told I talk about sickness too much?" It's the same things over and over and over. Every time I trust a doctor who promises to help me, he tells me something else that's wrong but doesn't try and fix it. I honestly feel like no ones in my corner, backing me up when I'm too scared to stand up for myself. My health is deteriorating and I don't know where I'll be in 6 months, a year... Will I even make it that long? That is literally the scariest thing that can go through my mind, but I am forced to think it every single day because no one can give me and answers. It's just like I've been thrown into the wind, with my health blowing me in every direction at once, and eventually I'll hit the ground. I'm trying to be positive, as new doctors say they are helping, but I don't see any progress yet. 

On the other hand, with chronic illness comes the "ups". They are few and far in between, but they're certainly existent. Today, I traveled 4 hours to see my endocrinologist, and also to get an MRI. The endocrinologist explained that my norepinephrine levels were crazy high, and that my adrenals are completely out of whack. He also found out I have Inflammatory Thyroid Disease, most likely Hashimoto's. This will eventually turn to Hypothyroidism, which is yet another diagnosis added to the list. But, I'm so thankful he found out so much and is willing to find ways to resolve each problem as it comes. My MRI went good also, & I'm hoping it will shed some light on my constant head pain issue. It's not that I want something to be wrong, but I just want the pain to stop. 

Today was an "up" day for me, and for that I am so thankful. I was even able to walk on the RiverWalk for about 5 minutes (better than nothing!) and I had so much fun. Being ill has made me strive for these "ups" and enjoy them as much as I can. Having multiple chronic illnesses is definitely a roller coaster ride, but I'm learning to make this life worthwhile. I've learned so much about myself and the world around me, and I can honestly say I wouldn't trade my life for anything. 

Remember everyone, seek the "ups", power through the "downs", and be happy in the life that you live. This life is short - make it count. ❤️

FIGHT LIKE A SPOONIE!

xoxo, 

Johna

Beta Rocks '15

 Hello everyone!

I am so sorry I haven't posted in a while, but I've been feeling kinda poorly lately. I just recently attended the National Beta Club Convention in Nashville, Tennessee as some of you already know from my Instagram (@chronically.amazing). I had the best time ever!!! We did so many cool things, & I even met some very special people while I was there.

First, we took a trip to Opry Mills mall, one of the biggest malls in the southeast. There was an aquarium restaurant in the mall, I repeat, an AQUARIUM RESTAURANT IN THE MALL. my teacher, Ms. Proctor, and I were so amazed. They had something called a Guitar Fish, & they had named them Gibson and Fender. lol I laughed way too hard at that. I'm so mad at myself for not taking a load of photos, but I did manage to get one. 

Also, I attended some general sessions as well as the Beta Ball & the annual Beta Mixer Dance. I usually avoid events like this because of my migraines, fatigue, & introverted-ness, but I had a great time! I even met some fabulous students from the Missouri School for the Blind! They were absolutely awesome! I danced with them & we talked for a while. They were so accepting of me when usually I am the outcast. Ms. Proctor went crazy with her camera during the time when I was hanging out with them, but I haven't been able to get the pictures yet! I'll be sure and post them when she gets the CDs ready though. So in the meantime, here's a photo of the Smoky Mountains that I took from the bus window: 

Oh, and I cannot forget about our hotel. We stayed at what is possibly the nicest hotel in America, the Gaylord Opryland Resort & Convention Center. This place was huge - and by huge, I mean I-could-fit-like-5000-duplicates-of-my-house-in-there huge. The hotel had 17 restaurants, 4 pools, a hot tub, fitness center, spa, a coffee shop, numerous convention rooms/ballrooms, a garden, shops, & everything else you could possibly imagine. I kinda felt like a princess or something while staying there. That place was an experience in itself. 

We also did some not really Beta related stuff while we were in Nashville also. I mean, it's Nashville, how could you NOT do fun stuff?? Especially since I've never been to Nashville before. We did something called an escape room, where they lock you in a room and you have to find clues, unlock other rooms, & eventually escape in an hours time. The room we picked was "The Heist" which has the lowest success rate at only 27% of people getting out within the hour. Our goal was to save some stolen art. Well, we escaped! With 3 minutes to spare at that! & this blind, disabled girl found one of the clues and unlocked the padlock all by herself. I was so proud of myself, haha. The people even gave us free bumper stickers that say "I escaped" on them! If you've never been to an escape room & you're able, you should definitely try it! They're wheelchair accessible by the way. :) 

I am sure paying for my trip now, though. I'm hooked up to my home oxygen (shoutout to Tommy Battle from Southeastern Respiratory), loaded up on pain meds for my headache, & have been stuck in bed all day from POTS and EDS pain, but it is all worth it. I literally would not trade the experiences I had for anything in the world. I am already planning to go to New Orleans next year for the National Beta Convention! Next time, I'll be sure to remember my Nuun tablets & extra water though. 

I hope everyone is having a fabulous day, & if not... *internet hugs*. 

FIGHT LIKE A SPOONIE!

xoxo,

Johna