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 

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