Throwback Thursday - Gallbladder Removal

Hello everyone! This is a #tbt to about 2 years ago when I was getting ready to have my gallbladder out! The meds had JUST kicked in when this pic was taken. (Thanks mom) Haha. Around this time, I was having so many issues/complications from my gastroparesis but docs still decided that my problem was my gallbladder & they wouldn't listen to anything I told them (not much has changed). Well, that was only a tiny portion of the issue. The surgery made my POTS symptoms much worse & triggered NDPH (persistent headache)... Also the surgery was dangerous because at this time we did not know I had Ehlers-Danlos syndrome. Honestly, it was a miracle I made it through this surgery because of all the complications. I thank God that I was able to fight through everything, but even then with all the problems that I was facing, I would've never imagined my health declining to the point it has recently. I'm still working on getting so many things diagnosed and stabilized, but I do not have a great support system to help me through this. The spoonie community is really all that I have & I thank each of you for always being there for me. I'm fighting, & I am determined to hold on until I can get this figured out. I love you all so much & please continue to send prayers/good vibes/spoons my way during this trying time. ❤️ If anyone has a question for me, I'd be glad to answer! Just click that snazzy "add comment" button & ask your heart out! 

FIGHT LIKE A SPOONIE!

xoxo,

Johna

Busy Week!

Hello everyone!

As some of you probably know from my Instagram (@chronically.amazing), I went to Sibley Heart Center Cardiology on Monday for a second opinion on my POTS. Well, the staff checked orthostatic pressures incorrectly, so that wasn't a good start. Then, the doc came in & told me I didn't have POTS, but plain dysautonomia... That is impossible since there is no such thing as "plain dysautonomia". You have to have a type of dysautonomia such as POTS. So I'm kinda back where I started with all this. "Drink more water and exercise & these symptoms will go away". Doctors say that but I know too many people who's symptoms only worsen, just as mine are doing. It seems like I am going to have to travel outside the state of Georgia to find a decent POTS doctor that will actually do something, anything to help me. I need answers. 

Today, I am having a slightly better day. I am spending the day with my mom doing some shopping & relaxing a bit. We stopped by Starbucks, my favorite place! We also went in this shop that has lots of essential oils & herbs, so I am definitely going back to try some things for my migraines. If doctors won't help me, I'll do it myself. I'm going to try the natural, no medication route & see how that goes, so wish me luck!☺️ 

Oh, & I have exciting news: I was chosen as the student counselor for Georgia Academy for the Blind's summer camp!!! This is my second year as a student counselor & my sixth year going to camp. I absolutely love it there because everyone is so nice, & no one gets made fun of. It is truly amazing. Well, I hope everyone has a great day!

FIGHT LIKE A SPOONIE!❤️

xoxo,

Johna

Painsomnia Adventures

Hi all! 

I did a lot of shopping today, which was so fun! I went to Marshall's, Ross, Target, & more. I got the cutest stationery to write to my pen pals❤️. Also I scored the prettiest dress ever. (Pictured below) 

 

However, I am definitely paying for my shopping trip as of now. My POTS is acting up & my heart is deciding to be stupid. Also, I ate some cheese fries (bad me) & gastroparesis says no. So I am currently lying in bed at 1:08am as I'm typing this in way too much pain to fall asleep. My migraine is worse tonight also... Ugh I swear I never catch a break. I'm watching Rocket Power though & I literally haven't seen this show in forever. It used to be my absolute favorite! 

On another note, I have a REALLY important cardiology appointment on Monday and I am sooo nervous. I always forget something or have terrible brain fog on appointment days. I'm praying that this one will be different, & they will finally give me some real answers. Prayers would be greatly appreciated. 

I hope everyone who is reading this has a great day (or night in my case). If you have any questions for me, scroll right on down to that little "add comment" button & ask away! 

FIGHT LIKE A SPOONIE! 

xoxo, 

Johna 

Forensics Fling!

Hi all!
     I hope you guys are doing well. Lately, I've been down with a nasty chest cold, but I still attended the National Speech and Debate "Forensics Fling" yesterday. Even though I woke up nauseous, I still took the 3 hour bus ride - emesis bag on hand. ;)
     When we arrived, Ms. Robinson (our coach) explained how everything works, since this was our very first debate competition. I was competing in the areas of dramatic interpretation and duo interpretation with my friend, Michael Myers. (Yes I am aware of the funny name). She also told us that we were all signed up for student congress, which I had never even heard of. Anyway, I competed in 3 rounds of each competition... When I switched from duo to dramatic, I went from a nagging mom to a psycho killer. So I got a tad confused. haha. However, I did a great job if I do say so myself!
     Student congress was amazing also. You have to give speeches on bills and I actually got up and talked - I even received a superb (6 out of 6) points on both my speeches!!! At the awards ceremony, they called out my & Michael's name for 2nd place duo interpretation. We were so excited... Then came dramatic interp scores. 3rd place - not me... 2nd place - not me... Everyone kept saying "JOHNA, you got this!" & sure enough, 1st place - Johna Wright! I legit cried because I was so happy (and surprised).

After we left, we made a trip to Chick-Fil-A, where I got to check out my scoresheet. I was ranked 1st by all three judges in dramatic interp! One judge even said "chilling!" at the end of my sheet. Score 1 for the crazy murderer! We also went to my favorite place, otherwise known as Starbucks for a coffee. :) Ms. Robinson and I have started a Starbucks picture tradition. 

I am looking forward to the next speech and debate competition! I had sooo much fun! In other news, there are only TWO WEEKS OF SCHOOL LEFT. Junior year is almost over with... & you know what that means??? No more physics!!! Hallelujah! 

     I'm feeling pretty bad today after having so much fun yesterday; but hey, that's just the life of a spoonie. It was so worth it. If anyone has a question or comment, make sure to click that "add comment" button, and say anything you want! 

FIGHT LIKE A SPOONIE!

xoxo

Johna

     

That Bad Doctor

OMG, so I had the most horrible doctors appointment this week. My cardiologist (4 hours away) referred me to a cardiologist much nearer to me so I could get a tilt table test to definitively diagnose POTS. His staff was amazing, but as soon as he walked in, "Why do you travel to see a cardiologist when you can see me?" Then he asks me "What do you know about POTS?" & I told him that it means your heart rate goes up & for me, blood pressure goes down upon standing. He tells me I'm wrong, then asks if I have frequent panic attacks. When I said no, he asked "well why do you have fainting episodes?" I'm just sitting there like WHY DO YOU THINK IM HERE?! But then he starts questioning everything I said as if I was lying, & distorted what I was explaining about my symptoms. He also was rude to my grandmom, so I had enough & walked out. I was beyond upset. I had to actually take a break before going back to school because I couldn't calm down. I am still angry. But, when I told my amazing cardiologist about what happened, he apologized & said he was going to call the head of cardiology there immediately. He then set me up at his hospital to have ALL my tests done at once! I absolutely adore him! 

Also, I'm still battling a chest cold & playing it doesn't turn into pneumonia or bronchitis cause AINT NOBODY GOT TIME FO DAT. haha. I hope everyone reading this had a wonderful day, & if you have ANY questions, just ask by clicking that "add comment" button!☺️

FIGHT LIKE A SPOONIE!

End of Course Blues

Well, it's that time of year again. Time for the Georgia Milestones End of Course Tests. BLEH. 😖  I get horrible testing anxiety which makes my heart do crazy things & then I become severely ill. Especially when the dumb school doesn't tell you anything & you're walking in imagining every worst case scenario... "What if I go to the wrong class?? What if they stare or laugh at me? What if I faint?" etc etc etc. I got to my first period & thank God she read out the schedule. I went to 209 which is my math classroom! I was so happy because I actually knew where I was going & didn't have to attempt to read the door numbers when I'm legally blind. haha.

When I went in, it was my math teacher who was administering! I was relieved because I hate explaining my "medical conditions" to new people who look at you like you're speaking French or something. It was the Lit exam parts 1 & 2 which was multiple choice & short answer. It was a breeze! Essay is tomorrow and I'm a little nervous but not too much. It turns out our whole class had to start late because they forgot my large print test when I had already reminded the vice principal twice. Oh well because I wasn't going to take that test on regular print & strain my eyes/give myself a migraine. I got my extended time though, but I only needed like 15 minutes of it. After that was over, I was feeling quite poorly, so I chugged some smartwater. lol.

After tomorrow, I won't have to worry about tests until Monday when I take the U.S. History End of Course (which is being administered by the art teacher who doesn't know about my illnesses). Oh well, I'll deal with that at the time. I'm working on a monologue now for debate (yes you can do monologues at debate competitions), & I'm a crazy killer who murders girls who are prettier than me. By looking at me, you'd never expect me to pick a piece like that haha. But I think it gives me a good chance of winning!☺️

I hope everyone is having a fantabulous day, & if you have any questions just click that "add comment" button below this post!

FIGHT LIKE A SPOONIE!

xoxo,
Johna

My First Post

Hi everyone!!!

I am so excited to be starting my very own blog! The purpose of my blog is to bring awareness to chronic illnesses & those who suffer from them. As my intro states, I am diagnosed with a few illnesses of my own & I would like to teach others about them. I mean - you know awareness is an issue when you tell someone "I have POTS." & they reply with "isn't that illegal?" or even the occasional "can I have some??" I LOL every time this happens! I will also be featuring other spoonies in order to share their stories.

Well here's how my battles with chronic illness started: I was born blind, due to a lack of optic nerve development (nerve that runs from the back of your eye to your brain). I gained some sight around age 1. One of the first things I saw was a butterfly & now I am utterly terrified of the creatures. I had stomach & kidney issues as a young child also. I suffered from cyclical vomiting syndrome (CVS) as well as abdominal migraines (yes that is actually a thing!) between the ages of 3-5... I vomited at least once a day during this time period. Around age 6, my health stabilized & remained fairly good until age 9 when I hit puberty. I began having migraines, shortness of breath, constant fatigue, chest pain, joint pain, dizziness, & a load of other symptoms... Then one day in February of 2014, shortly after a kidney drive removal & gallbladder removal, I woke up with a headache. It lasted 2 weeks before I finally went to the ER, where they treated me horribly (actually the night shift was okay but the day shift was terrible). I had a lumbar puncture, ultrasound, MRI - normal, normal, normal. Then they gave me Haldol. They said it was a "trial medication" for migraines but I later found out it was an ANTIPSYCHOTIC. It made me just that, except without the "anti" part. I thought I was going absolutely insane & no one seemed to care. I was discharged in that condition & haven't went back to that hospital since. Weeks later, I saw 3 different neurologists & I was diagnosed with POTS. I have since started Botox injections for my constant migraine but have had no relief.

Recently, my health has been declining. I have no energy & force myself to go to school everyday. I participated in the spring musical, "Into The Woods" this year, & almost had to drop out, which would've shattered me. I made it through, though & I will keep pushing through all my symptoms. I really hope you guys find that my blog is helpful in living with a chronic illness, & I look forward to hearing from you!

If you have ANY questions, go to that conveniently placed "add comment" button & ask away!

FIGHT LIKE A SPOONIE!

xoxo,
Johna