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!