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What’s happening.....

Okay i’ll admit I got caught up in all the 5sos stuff last night and forgot to do this. Sorry. Lots has happened in the last two weeks! I’m finally getting answers to questions for once! Shall we? Basic Routine things..... DENTIST: -got all of my fillings done (thank god!) -FINALLY got fit for my night guard which i pick up on Tuesday THERAPIST: -mostly the same - we have picked back up the discussion on diagnosing my PTSD Now on to the important things....... CARDIOLOGIST: So i told you the CT of my aorta came back normal and that i had to go through a Tilt-Table test next, right? But what is a Tilt-Table test? Essentially it’s a test trying to get you to pass out. (About is fun as it sounds). Basically they put you onto this table, hook you up to an EKG, an automatic blood pressure cuff that goes off every 2minutes, and a manual one, as well as an iv. Then they strap you in and stand the table up to about a 70-75° angle. Almost as if you were standing like normal. And then they just watch you. If you start to exhibit symptoms at some point they mark it and then give you the medicine that supposed to induce a black out (if you have the disease), if you don’t you basically just stand there for an hour. Now a normal person will get through the entire hour of this test and medicine with out any changes. Me however? My result was a Positive test aka. I blacked out... hard. Quick little rundown if what i went through: -went in (at 6 fucking am) got hooked up and strapped to the bed and stood up -spent the first 15ish minutes talking to the techs in there while listening to music -around 15minutes in i get really hot and nauseated (typical symptoms) -so they went ahead and gave me this pill they called nitro(?) -dissolved under tongue and tasted like absolute shit -was told it would work really fast (they weren’t joking) *they make you talk through the entire thing to them so they can judge when you fully collapse and which illness is correct* -in less than 3 minutes i could very obviously feel my heart rate climbing, i felt like i was in a sauna sweating buckets, nauseous, my hearing got fuzzy, and the last thing i can remember is sing-songing “And there goes my vision”. Next thing I know im laying down and my legs are in the air (trendelumburg) -spent an hour getting fluids and went home But what does this mean? CARDIOLOGIST pt. 2: - official diagnosis is Vasovagal Syncope -that basically means my blood doesn’t like gravity and my blood pressure fails at compensating for changes in positions. -Unfortunately this does not answer the Sinus Tachycardia issue but at least now I know the two are definitely not related (speaking of, I actually clocked a heart rate of 75 twice in twelve hours on Wednesday so everyone’s freaking out now because that is much too low for me(didnt feel great either tbh)) -no cure, all i can do is increase my salt intake and keep hydrated to help it not be too bad. RHEUMATOLOGIST: -with the combination of my retinal, cardiac, and blood work results it is confirmed i do have Ehlers-Danlos syndrome -current on a 6 month wait list for a neurologist for those test and some other things -have to start doig PT to help stabilize my joints a bit better -other than that i am now on a 2 year wait list for a geneticist in Baltimore to determine specifically which type of EDS it is -eventually have to see an allergist for the Mass Cell Activition issue we think i have. Overview: -eyes are great -i dont have POTS -i do officially have Vasovagal Syncope and Ehlers-Danlos Syndrome -still have a lot further to go but we’re finally making headway -still gotta figure out where the Sinus Tach is stemming from and how to reduce it -Gotta start PT soon and just make sure i stay hydrated and eat lots of salt And yeah! It’s nice to finally be getting answers that explain ALOT about me. Excited to keep making progress and get more answers. I will keep you updated as i can, told you a lot has happened the last two weeks lol! -JT

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Update coming!

I see both the Rheumatologist and Cardiologist on Tuesday and Wednesday respectively so i should have a more cohesive update on all the test ready on Thursday. -JT

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Sunday Quick Update

-Storm is fine -Anemia is gone - started stress grinding in my sleep. Have to get a night guard. But first have to get all the fillings my dry mouth has caused fixed -insomnia is relentless -started seeing new rheumatologist -shit ton of testing to do for EDS, Dysautonamia, Mass Cell Activation, and POTS -Had a CT scan of my aorta. Cardiologist says he doesn’t see any thinning so we’re clear there - psychiatrist still believes it’s all anxiety related (don’t even get me started here) - have an appointment tomorrow to get my eyes dilated and a test done to check for retinal tears - on a 2 year wait list for a specialist in Baltimore - 6 month wait list for the neurologist i have to start seeing - also have to have an mri to check for aneurysms and trigeninal(?) neuralgia -still haven’t heard from judge on my disability - Tachycardia continues to keep me basically bed ridden (i think it’s actually getting worse again but I don’t see the cardiologist again for a few weeks) Overall it’s honestly not as bad as it seems. Feel like were finally making progress and as annoying as these test are, if it gets me closer to answers then I don’t care. Mentally i can start to feel myself slipping though, kinda in limbo about what to do there. All in all my life mainly just sitting on a plateau for now until all these test are finished. It is what it is and im here, so yeah. -JT

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For as much as hate the trial and error that comes along with seeing different specialis, i am so fucking grateful for being referred to this one.

-Right as she walked in the door she says what I already know, that i most likely have Ehlers-Danos Syndrome (EDS)

-she also agrees with the Dysautonamia

-and she even suggested i may have Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS)

-so now i have to add a retinal eye doctor and a neurologist to my specialist roster but honestly if this finally starts getting me answers i dont care.

Started seeing a new rheumatologist today

Hopefully we finally start getting answers

[beyondthebarricadephotos]

Started seeing a new rheumatologist today

Hopefully we finally start getting answers

[beyondthebarricadephotos]

Open letter to time itself......

Oh 2017, where does one begin.......... You know what I hate the most about you? I hate that it is literally impossible for me to hate you. I hate how you SHOULD qualify as one of the worst years of my life and yet you don’t. But more than anything I despise how hard it is to try and get anyone to make sense of that. You try explaining to people how in less than four months you go from a human who runs at warped speed all the time to a human that can barely leave the house or even get out of bed most days. How you start a year off at the very peak of one your hardest battles with depression you’ve ever faced. Or what it’s like to think you have TMJ for nearly a year to find out ‘oh! Actually, your jaw just kept dislocating itself but now it fixed it on its own so your good’. Then to think the lack of eating you’d been doing caused you ulcers to act up again only for that to change to your gallbladder only to find out you ACTUALLY have Auto-Immune pancreatitis. And then trying to let that sink in and all the uncertainties involved with it. Then finally getting to a point where you think you should be doing better yet you’re still stuck in bed. Spending your days thinking it’s just an anxiety issue only to find out you have actually have a progressive heart condition of Sinus Tachycardia that chose now to start getting worse. And even more so turning around to find out not only do you have all of that and no one knows why yet but you’re also anemic now thanks to all the stress. Then finding out you’d actually been this way for a long time but nobody said anything. But try explaining to anyone that the hardest part of all of this is actually finding a rheumatologist to test you for EDS and Dysautonamia, I promise you they won’t get it. They’ll just look at you not sure of what to say next because in their mind you’ve just become this tiny fragile porcelain doll who’s one breeze away from completely breaking. You finish telling them all of that, and they completely miss the bigger picture here. Because that’s just it: I’m not fragile. If anything im stronger than I’ve ever been. I can’t hate you 2017 because despite dragging me through hell and back and then some, reality is, this isn’t even the first or the second time my body’s revolted against me. This probably won’t be the last either. This isn’t even the worst my anxiety or depression has ever been. And a lot of this actually goes hand in hand with not only each other but having autism/adhd/ and anxiety as well. I can’t hate you even though so much of this is beyond my control because,2017, you’ve taught me more self awareness in the last 365 days than I’ve had in my entire 23 years on this earth. You showed me how strong I actually am. You showed me its okay to be broken, because even then you can still be a beautiful masterpiece. You’ve shown me how beneficial it is to actually talk to people and try to sort out what’s in my head. You showed me how to start identifying all my anxiety and sensory trigger points. You’ve shown me that even my breaking point, isn’t ACTUALLY my breaking point. You put things into a perspective i will be damned if i ever take for granted. You showed me what it’s like to prioritize importance and health over materialistic desires and concerts. You showed me how my own actions whether i can help them or not can affect others. You’ve shown me the baby steps to start recognizing manic and sensory episodes and learn techniques to calm myself down from there. You’ve shown me how to start refocusing my anxious energy into caring about others. You’ve shown me the first steps to actually start communicating with people so that things im going through or things they’re trying to explain to me don’t get lost in translation. But most importantly you’ve shown me that just because i may be down right now doesn’t mean i should count myself out. There will come a day where i can pick my camera backup, stand tall, and face my dreams. And just because i have to lay low right now and just kind of exsist, doesn’t mean it’ll always stay like this. I can’t make people understand what it’s like to be me. And I certainly can’t make people understand what it’s like for doctors to tell you a human cant function like this yet they don’t know how to fix it. But i can hope anyone who reads this (myself included) sees the the bigger picture. I missed out on a lot this year and im dealing with it. But I can’t hate you 2017, i can not hate you because the only thing i can truly say is Thank You. Now if you could be so kind as to GET THE FUCK OUT OF MY WAY, me and 2018 have a lot knots to detangle and lose end to sew back together. Happy New Year you bastard -J.T.

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This country is falling apart but ‪In other news today IM NOT ANEMIC ANYMORE! ‬ ‪That should be comforting yet knowing we have no idea why it ‬happened in the forst place or if it will last is kindaaaaaa..... eheheh But im fine right now in that department! Now i just gotta figure out why I can’t sleep and when i do i grind my teeth so bad i can’t eat🙃🙃

[beyondthebarricadephotos]

Don't say I didn't warn you

I told y'all I'd be bad at updating this stuff, and to be honest still pretty much just sitting here at square one so...:/ Seeing as it's Friday and I'm far too tired to scroll back right now and see what I've already written, I think I'm just going to do a sort of comprehensive general update instead. Lets get started shall we!! STORM: - Fortunately that death scare with him was caught fast enough. Turned out to be a complication between two medications but hes good now. - Well, okay 'good' might not be the apt term at the moment. He was actually doing really well the last few weeks but the last couple of days he seems to be reverting back to before via stuck hairball so guess who gets to take him back to the vet to be flushed out AND shaved this time!!!! (Im losing it over here) COUNSELOR/THERAPIST -same weekly appointments -ptsd digging into has semi-sorta been put on hold at the moment -anxiety meds raised(again) - starting to look into dysautonomia as possible explanation to my strange reactions to the weather *ill adress this section at the end. Its complicated. * GASTROINTESTINAL DOCTOR -upper gi/colonoscopy were fine -biopsies taken were negative -ulcers are fine but my stomach lining is inflamed -biggest problem right now is lack of BMs but the unfortunate reality being this side effect is caused by a couple of meds and the iron infusions. Will fix itself eventually but for now i have to take Linzess to counterbalance it all so I don't end up in the ER RHEUMATOLOGIST - potentially going to start seeing a new one under Hematologist recommendation to actually get a definitive answer on whether i have Ehlers-Danlos HEMATOLOGIST -so this is a new one -one of the very first things he had to say about me: You are very underweight for your age (no shit Sherlock) -shit ton of blood work was done -the GI had found i was anemic (around 10) - apparently i have been for at the very least a year but since 10 is technically the low side of normal no one brought it up -given the sense of urgency he had on the phone im going to guess my hemoglobin is significantly lower now (8-9) -started iron infusions. Have second one on monday and then its just a waiting game to see if my system is capable of absorbing enough anymore -this past week has been absolute hell with side effects from the first infusion which is unfortunately for me, a highly common occurrence with the first round CARDIOLOGIST -Saw him on Wednesday actually. Everythings still the same -Metoprolol has helped to tone my heart rate from 115 to ~87 -but it doesn't hold like that all day, which is partly due to the anemia -Sinus Taccychardia is still present. Always has been always will be. -it's actually looking like the reason it got so intense this last year wasn't anxiety but the anemia getting progressively worse -so odds are this might actually go back to how it was when i was a teenager if we can get my internal system back in balance and my hemoglobin back to normal ORAL SURGEON -Lucky Me! Looks like i get to start seeing him again -Between obsessively eating ice and being stressed in general I've started to develop a habit of grinding my teeth in my sleep - bad enough on my jaw as it is because its started getting stuck out of place again -also bad for my weight because it's exhausting to eat even more so right now SIDE EFFECTS -honestly not even going to try to get into this list because so many things overlap and are nearly impossible to explain IN CONCLUSION: To be quiet honest as bad as all of this sounds it's really not. I have gone through significantly worse health wise before, and that was when it took people ages to figure out what was wrong. At least with all of this we know what the components are and how each piece interacts with each other. Its just hard to fully solve the rubiks cube without messing up some sides a bit worse for a little bit. The difference right now i KNOW whats wrong with me, the hard part is unwinding this ball of lights without breaking any bulbs. But its not like were going in blind we know what's causing what and interacting how its just unfortunately a marathon to get everything back in proper working order not a sprint. My biggest problem right now is more so a mental tug of war between my past medical experiences and my current state of functionality (lack thereof really). The harder part right now is just keeping a level head. I can't stress how demoralizing and aggravating and exhausting it is to live like this because it's not really living and it's barely even existing. To go from being a human that runs at mach 10 all day long to one who can't even get out of bed most days or make through going to town for appointments simply because there's no engery left to muster. Its defeating in a lot of ways and trying to keep some sort of grasp on the knowledge it's not something i can help, it's not something that will last forever, and it's not something I can make move any faster and do anymore than I already am, like I said it's all complicated. I'm just trying not give up on everything at this point. Even if seeing my body fight itself and being helpless to stop my mental state from cracking and deteriorating is all i can see in front of me here. (Granted the holidays and season changes probabllyyyyu isn't helping right now) If I can make it through 7th grade and I can make it through freshman year, I can get through the current hurricane im sitting in. Still doesn't make any of it any easier but I know it's not impossible either. Im trying, I promise. -JT

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...

First iron infusion down! Going to try to type a quick rundown update tomorrow then do more details after i see my cardiologist in a few days.

[beyondthebarricadephotos]

Sup,

I am wholly convinced square1 doesn't exsist. Ive been trying to figure out all day to word this stuff. A lot's happened the last week- week and a half. Uh, first and foremost, i went back to the GI doctor. They weren't sure if my ulcers were agitated again or if my pancreatitis had flated back up causing the other problems so they decided to do a shit ton of blood work and a CT AND schedule a Colonoscopy. CT went fine also got a call telling me im anemic now (weeeee) so they decided to go ahead and just do both an upper and a lower GI Found out that APPARENTLY you're anxiety can stress your pets out to the point they make themselves sick. No joke, anemia has always been a fear of mine and hearing that sent my mind spiraling. And to make things even better it stressed my cat to the point HE became completely impacted. Im genuinely not exaggerating when i say i thought he was dying on me on Sunday he got that bad between being flushed out and refusing to eat or drink anything. Had the upper and lower yesterday. Essentially my colon is fine, my ulcers are still good, small hernia still there, and my pancreas is a-okay. Cat had to go back to the vet today because he still wouldn't eat, found out he fell into ileus (basically his intestines forgot how to function) but its easily treatable and honestly he looks so much better than he did Sunday which has been a huge help since he's practically a therapy cat for me. As for everything else; we did find that my stomach was quite irritated and has been for a while it seems(don't know why though) but im not bleeding internally so we still don't know where the anemia is stemming from. So still kind of sitting here at square 1 although we have ruled out a lot of whats NOT wrong with me so that's pretty decent progression and they're also referring me to a hematologist since its not an internal gut problem as well as testing for H. Pilori and Celiac. As for how im handling all of this: well i had two panic attacks within 3hrs of each other today if that tells you anything. Other than that honestly at this point I feel like im trapped inside a sound dampening box where i can SEE everything happening around me but its not even going in one ear and out the other, it's just flat out not registering anymore. Kind of like being cemented in place but still having a plexiglass window in front of you where you can see your dreams just sitting there waiting and being helpless to reach out to them. I honestly don't know when I'll have more to update since we're waiting on a lot of test results but yeah, its been a funnnnnn two weeks over here im just gonna keep moving forward as best i can considering i cant do much else🤷🏼‍♀️

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Lesson learned:

Never ask the universe if things can get worse, they can and will. And if that doesn't give you a headsup to just how fun my life has been for the last week or solet me give you the rundown • the attempt to just adjust the meds i had failed meaning i did have to add metaprolol to everything • it actually has worked wonders in lowering my heart rate though so thats a plus • it has been becoming increasingly apparent that we need to test for PTSD and that it also applies further than we thought (aka. Not just from the bullying) • sparing some details the cherry ontop here is me getting a phone call this morning saying that i am now anemic but no one knows why so guess who get to have a CT scan AND an upper/lower GI 👍🏻THIS GIRL👍🏻 Yeah my life has been funnnnn........... and even funnier is i don't even care. I can promise you i am significantly more bothered by the events in Vegas than my own body fighting against me right now. And honestly as much as i want to say something about Vegas there aren't any words or paragraphs I could type to do this tragedy justice. Its hard enough as a fan to process seeing people lose their happy place like that and their family members but to put it into words, there aren't any to do it any justice. But honestly if you come across any of the numerous go fund mes by all means please donate. This country has enough wrong with it already, the best thing we can do is band together and support these families and get our shit together so this doesn't happen again. But yeah, ain't life just grannnddddd🙃 -JT

[beyondthebarricadephotos]

I have found true hell on earth....

* Read at own discretion, mildly NSFW. * ........Thank fucking god it has cold floor tiles. The amount of times i've layed on that bathroom floor whether it be from nausea to trying not to pass out, none will ever compare to the last >12hrs of fighting a borderline impacted colon. And yes I know this is weird and gross and y'all probably don't wanna know but I said i'd keep you updated as possible so here we are. First things first, one thing you to understand about me is i have an almost inhumanly high pain tolerance, so if something hurts me most people would probably be screaming bloody murder in a ER by then. Im dead serious. As someone who's broken 20+ bones, had bleeding ulcers, has pancreatitis, and god only knows how many concussions i have more than baffled my fair share of doctors with lack of reactions to most things. Now the unfortunate thing about pancreatitis is its unpredictable when it may flare up again. And you have to add in EDS which has a very common symptom of causing extreme intestinal muscle spasms. And i mean your organs are already constantly moving in spasms and these both just exacerbate it. Basically think of a charlie horse only in your intestines not your leg. Yeah, exactly. FORTUNATELY [read: i hate everything] there are these meds called Anti-spasmatics, which help reduce the rate and intensity with which things move. Which is great except for the one blaring side effect of near constant constipation. And what happens when have a high tolerance and cant tell your backed up? IMPACTION Weeeeeee. Which leads me to how fun my night/day has been with laying on a bathroom floor trying not to pass out while it feels someone tries to rip my organs out with their bare hands. I will say i haven't ended up in the hospital (yet) because i think I caught it just before it became something unfixable on my end, but dear god if this is how most girls feel on their periods (i never experience the cramps part) then by god am i glad for my pain tolerance because im going insane here feeling like im dying. Like I said I know this may seem a but TMI and weird and gross, but its an unfortunate reality of living in my body and if im gonna be open about all everything im not gonna sugar coat some stuff just because human body processes are downright disgusting sometimes. Anywayssssss, im going to try to take a nap now. -JT

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Catch 22:

So it is currently 3:16pm as i am typing this and i have just finished the doctors appointments i mentioned in my last update. *I need to backpedal here for a second; In my original update i had briefly mentioned how it's hard just to get out of bed somedays. I don't mean that in the depressive sense that i just don't want to or lack motivation (trust me i've been there and done that). I mean in the physical context where my body genuinely doesn't have the energy reserves left to do more than get up and go to the bathroom or go to the kitchen for food.* So, do you want to know what literal Catch 22 in life feels like? First of all mentally I actually feel the best I have in ages. I really and truly have a lot of plans for several things I want to be doing right now. And being a 23year old logically what runs through my brain a lot of days is "Why am i not doing these things? We got the pancreatitis figured out, whats the hold up here?". Honestly a good bit of the time my mental state tells me I should be out there doing this, this, and this but realistically my body says not just "no" but "Oh H. E. L. L. FUCKING NO". See what I mean by catch 22? Where you're literally caught between mentally wanting to do everything and physically being incapable of doing anything. And you know its bad when even you're cardiologist and both therapists can recognize that it's practically impossible for anyone to be a functioning human being when you're heart rate runs like a never ending roller coaster continually jumping from around 110-180bpm on its own and you have ZERO control over it. What makes it even worse is when everyone (myself included) can agree that a lot of it is an anxiety problem but then the question is 'Well, what is this anxiety stemming from?' Let me answer that for you, NOBODY KNOWS. Because nobody has looking in the place they should have been or they've been blocked of in my head until now. Like, imagine your decorating for Christmas and you finally get to that box of light thats basically just a tangled wad. So you sit there for ages untangling it and you finally think you're getting close to having all of the light strands sorted, right? NOPE. All it take is untangling one more strand for you to get a glimpse and see that the normal lights that go out in the yard arent the only problem here, there's actually and even tighter wad of white icicle lights in the center of all of this. [If you cant tell by now i've been working through a lot of stuff in my head the last couple of weeks.] So what are those icicle lights? Well, let me put it this way: there has always been some sort of stressor going on in my life whether it be my health, outside family problems, school or otherwise, and it wasn't really until right around when I graduated highschool that things started to settle down. It didn't last thought. The thing is i've actually already gone through two other instances in my life where it took doctors forever to figure out the problem. But, each time it was either that, or a broken bone, or just a basic sinus infection it was still something that is fixable, something preventable in the future. But you can't prevent/cure EDS, Sinus Tachycardia, or Auto-Imunne pancreatitis you can only mange symptoms as you get them. Now imagine a human with really bad anxiety in general and severe trust issues from bullying and add in what feels like a cursed immune system. Sounds pretty traumatizing doesnt it? So, without going into details right now, today was both kind of a small breakthrough and a giant leap backwards. What it basically amounts to is those icicle lights........ are PTSD. And those other strands that we've unraveled are just my everyday anxiety problems. Yeah i know, "how could you have PTSD and not know it?" The thing you have to understand with Autism is a lot of emotions and daily occurrence gone unprocessed for me. Its not that im oblivious, my mind is simply not wired to comprehend a lot of social constructs so it just kind of shoves in the back to be dealt with preferably never. And when its something that's progressed and transpired over a lengthy amount of time, digging through all the sticky notes to find the research paper take, well it takes how ever long as it takes. And when you're worrying about other thing digging through old stuff get put on the back burner. This genuinely a new concept for even me but actually just from the little bit of looking into ive been doing it would explain A. LOT. And as for what happens from here honestly, i have no idea. But i can say that while right now it feels like another goddamn traffic standstill in my life, at this point if it is PTSD it's kind of a comforting concept. Which i know sounds weird but it means theres something tangible i can work through with help and hopefully start to get a handle on some of to help ease everything else happening right now. Only time will tell and im in this for the long run, i swear. -JT

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Welp.......

Something i should probably mention for starters, ya know that LinQ system i briefly mentioned in my update? So its basically like a mini computer that constantly records my heart rate, blood pressure etc and everytime i have an "episode" (its different for each person) i have to press this button that looks kind of like the key fob for a car. Long explanation short that button puts a time stamp on the data and so that when (its not an every night thing) I upload the the stuff after calling them theyre not sorting through a shit ton of info. When we started all of this my average heart rate (bpm) was about 115 which is bad enough in itself buttttt...... Okay one thing you have to understand is im very weird about taking meds between mixing them with everything and then a sensory issue with then ontop of that. Well after several conversations we had agreed to just try some adjustments on everything I already take to see if it would help so i didnt have to add more stuff to my routine. Guess what? Found out today that not only is it NOT helping my average has jumped from 115 to 150bpm and no that is not a typo. I promise if you saw me right now you'd understand. No clue whats going to happen from here but i see the two people handling my adhd/ austim (meds included) on Wednesday but yeahhhhhhhhh just thought id put this update out there Aint life just grand🙃, JT

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Personal Update

Hiiiiiiiiiii……….. iiiI have absolutely no idea how to start this, but i guess the beginning is a pretty good start.

(Im not gonna lie i am absolute shit when it comes to talking about things in my life especially my health but im trying to work on that and hopefully use it to help educate in the future)

Il'l be honest this last year and a half-two years has been rough, no one ever tells you the sheer difference between just knowing about something and coming to terms with it being reality.

Growing up we always knew i had ADHD and even got that tested/medicated very quickly. But we also always knew i had Autism to some degree, unfortunately living in the south in the late 90s there weren’t many people willing to test/label a girl with that (things are ass backwards down here what can i say). What they don’t realize is its essentially social suicide by not getting me tested then because being the outcast of the outcast and not be able to offer explanations that does thing to people. But, At least we knew about it early on because i was able to do my own research over time and even found ways to work with people on the spectrum to better understand my own problems.

Now flash forward to the summer in between my 2nd and 3rd year of college, i can’t explain it but its like reality was playing catch up to the point that the DAY before my junior year was supposed to start I dropped out. Although i will admit at the time my reasoning was because of my mom having surgery and someone need to keep an eye on her for a bit. What I didn’t know however was giving my mind room to breathe finally would start sort of a domino effect of problems.

So now lets jump to the spring of 2016. I’ve had a lot going on both mentally and physically my whole life (especially right now) but for some reason one night as im sitting at a music festival camera in hand waiting on the main act to start i look around and for the first ever I felt like i was at home. You’d think that’d be a good thing right? Almost but not quite. Following that little realization i FINALLY got someone to get me tested and sure enough right in the middle of summer not even a week after Warped Tour, i got the answers I’d been waiting ages for. Not only did we finally have definitive diagnosis of Level 1 ASD we also found several things that had been lurking in my minds shadows (i.e. More anxiety, depression, insomnia, bi-polar, slight manic) which was fine but also felt like the entire floor had ripped out from under me with no warning.

Now, Ive dealt with depression off/on my whole life but it is TERRIFYING to be in an all out mental free fall and not even be aware of it at first. Im not even joking when i say i felt like i was going insane. I can say now though that I completely get why people love New Years. After months of trying to understand things and recalibrate meds we’d finally found a combo that works, and even driving that point home with me having a huge mental break through happened on New Years eve. As im typing this right now i can tell you my mental state is miles better than it was at the beginning of this year, theres still a lot of work to be done on my end but my self awareness and recognition has increased exponentially for someone late to the show here.

Oh, But wait! Theres more……….

Remember me saying there were physical problems occurring too? Well, around late 2015-all of 2016 I started having intestinal issues again which as someone who’s had ulcers before thats not something you want to feel again, ever. Except it wasn’t ulcers and after a shit ton of test we did determine it wasn’t my gallbladder either (s/o to my genetics), in the end it just kind of got chalked up to anxiety considering i had also been dealing with what we had thought was the start of TMJ (thanks mom).

And really that was pretty much the running theory up until February of this year happened. When i tell you my body has impeccable timing im beyond serious because literally TWO DAYS before my umptienth visit with the oral surgeon my jaw……well long story short, my jaw had been partially dislocating itself for a year until it finally just decided popped back into place on its own. Which yeah great that answers that problem, but the gut issues han only gotten significantly worse at this point. Spareing some details and numerous appointments, about mid spring this year we found out I actually have what is known as Auto-immune Pancreatitis, Sounds bad right? Because it is. Sad part is it would’ve been found a lot sooner too if it wasn’t for my almost inhuman pain tolerance. Even funnier is both EDS (associate with my jaw problem) and Pancreatitis are fairly common in Autistic and ADHD people (Story of my life at this point).

Were, still not done though!

Ontop of ALL of this ive also been getting significantly more frequent migraines, again not new in my life but it is something thats finally being paid proper attention to (kind of). Migraines aside, another problem being that my whole life i’ve always had a higher resting heat rate than most people, again very common in adhd people and athletes. Whats not common about it, is for my average to be 115bpm while sitting perfectly still and then jumping on its own all the way to 170bpm without me having moved an inch (bare in mind 115 for me is what 60 would be for most people so 170 is probably more like 130 in normal people).

Which bring me to the last couple of months here. Technical jargon and process aside we(my cardiologist) have fortunately found that it’s not a valve and it’s not a rythm problem but it is an electrical problem known as Sinus Tachycardia or laymens terms; my heart beats way to fast naturally and randomly speeds up on its own without any outside prompting. At this point in time the main goal is to figure the why i have some sort short circuit in my system and then the migraines and other things i haven’t mentioned can be dealt with.

And that “self tanner” photo (on insta), that is from me havin a LINQ montir placed in my chest so that my heart can be monitored 24/7. No i can’t feel it, yes i was awake, yes i mean my boob, no it doesn’t stay in forever it only has a battery life of about three years……

As for what this means in terms of the future of my photography: I’m not giving up on Beyond the Barricade I actually even have several ideas to make it so much better than what i originally had planned. But for right now i have to raise the caution flag and take a step back from basically everything in music. As much as i dont want too my health comes first and even if mentally im in a much better place physically its hard to even just get out bed most day and getting this sorted is my number one priority. Yeah, I might be down at the moment but i will be damned if i let life count me out. I’m still here I promise.

-JT

Insta: https://www.instagram.com/thiggy_/