Doctor-Palooza

Hi everybody!

As some of you already know, I just got home from 3 days in Columbus doing tests, blood work, & much more. The trip was so worthwhile & I even got to do a few not-illness-related fun things while I was there! 

The first doctor I saw was an endocrinologist. He did so much blood work on me I thought I was gonna need a transfusion afterward! In total, he took 22 vials of blood (some were the big vials) & I was poked 10 times. -2 veins were blown out in the making of this blood work.- However, I will hopefully get a LOT of answers because he suspects hyperadrenergic POTS. He was so nice & he even called us into his office to have a chat about my treatment. He is working closely with my cardiologist (main treating doc) to come up with a plan that will help me the most. 

After the endocrinologist, I went straight to a new neurologist. He was so knowledgeable on POTS & the co-conditions that are seen in many POTS patients. He immediately said that I have a movement disorder (not sure exactly what yet), and he strongly suspects EDS type 3 - hypermobility. I've been told I have this, but I was not evaluated properly. Finally, he suspects Chiari Malformation type 1 and ordered an MRI. I've also been told I have this but the doctor wasn't knowledgeable at all so I want to be sure. He was so pleasant and seemed genuinely interested in my case and concerned about treating me. He is also working with my cardiologist and developing a plan, which will hopefully include medication to treat my hemiplegic migraine and NDPH. 

I had a tilt table test also, which was not as bad as I expected & it was so very informative. My blood pressure dropped to 50/20, and my cardiologist could not believe I was conscious. He did not want to see me faint since this (& my heart rate of 128) classified as a definite positive for POTS. Everyone at the Midtown Medical Center was so nice and caring. They brought me warm blankets, cheered me on during the test, and walked me to the car. A special shoutout goes to Stacy, the lovely nurse who helped me through everything and was so sweet! Oh and to the guy who couldn't get a vein until 3 minutes of digging, it's not you its my veins! Haha. Anyway, every single person I met at the hospital was so pleasant, even though there was a slight issue with scheduling. I was so pleased with everything. 

My cardiologist scheduled me right after the tilt table test, so that he could discuss everything with me and my grandmother. He takes us back to his office, and the first thing he says was "if only that jerk would have done the test like I'd asked him to, it would've confirmed everything he was questioning. When I ask for a pizza, you don't need to tell me what I want on it, you just need to give me the pizza!" I love him so much😊. He explained how the test went, & how I definitely have POTS. Then, he asked me to try a gluten-free diet for 2 weeks, because he suspects Celiac disease. He then said that he was going to talk with the endocrinologist and neurologist over the next couple of days, then he would call us with everything they want to do. They want to organize a treatment plan that will address as many of my medical issues as possible without any inpatient stays or extensive testing. He actually cares about me & listens to me!❤️

I was beyond happy with everything that went on this week, and I finally feel like I am on the right road to feeling better in the future! I know my illnesses are "chronic", so I won't be cured, but that doesn't mean I can't have some relief, right? I hope everyone else is having an okay time, and if you have any questions, you can click that snazzy "add comment" button and ask your heart out! 

FIGHT LIKE A SPOONIE!

xoxo,

Johna

GAB Summer Camp

Well, yesterday was my final last day of camp. I cannot come back as a student counselor anymore, as I am graduating next year. All the teachers told me how much they'd miss me & how proud they were, and I cried a LOT. I couldn't even speak during the closing program because it was all sinking in. However, this last camp was so much fun & some amazing memories were made. 

(Me & one of my favorite teachers, Ms. Rushing)

(My friends Nikita, Jayla, & I)

(Rock wall adventures - I failed epically)

In addition, I have finally decided what I want to do with my life. I would like to be a teacher of the visually impaired and blind. I adore each of these children & they are so special to me. I am so excited as I move forward to the next chapter of my life and I look forward to teaching these lovely students. I am so blessed to have been able to attend camp & meet these great kids/teachers. 

Questions? Go to that little "add comment" button & ask me anything!

FIGHT LIKE A SPOONIE!

xoxo,

Johna

Senioritis

Hi everyone! I have neglected to post on here for a little while but I'm back! I took my senior pictures today and I was thinking how I only have ONE MORE YEAR of all this, then I'm done. No more annoying bullies that torment me in the hallways, no more begging to get my accommodations, no more Thomson High School. Thank God. School has caused me so much stress, but none of said stress comes from the actual schoolwork... I've always loved learning & I plan to go to college, but my school is just not used to dealing with a kid who's "different". 

Anyway, this isn't a pity party. I had a great time getting my picture taken today. I went to a beautiful home in my town that has a gigantic garden. Then, we went to the railroad tracks and got some shots there. Apparently, that is illegal but hey, I'm only a senior once. :-) Last, we went to the lake and I took some water shots! I think they turned out GREAT. The only bad part about the day was all the walking we had to do, especially since it was quite humid today. My POTS was acting up but the photographer was very understanding. Oh, & since I've just recently gotten my braces off, I was actually able to smile in the pictures! All in all, it was a great day.  

I am in quite a lot of pain now due to Ehlers-Danlos, but I've got the heating pad & it's all good, because I leave for camp tomorrow! AHHH!!! I am so very excited and blessed to serve as a student counselor for the second year in a row. Please send positive vibes & prayers that my pain isn't too bad so that I can fully enjoy my time with those lovely children! If anyone has any questions for me, feel free to click the "add comment" button & ask away. I'll post pics from camp!❤️

FIGHT LIKE A SPOONIE!

xoxo,

Johna 

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