#but i've never been diagnosed with any form of anxiety by a doctor or anything like that so I don't know if i even have an anxiety disorder | Explore Tumblr Posts and Blogs

pcos-uno-reverse · 11 months

Text

Hey pcos, fuck you!!!

Starting this blog (and a tiktok) to document my pcos journey. So here's the beginning, for those who are interested or also struggling:

In eighth grade (2012ish), I woke up for school like normal. Took a shower, did my makeup, etc. After I got up from sitting down, a stabbing pain radiated from my left lower abdomen. I told my mom I feel sick, and laid down. My mom is a nurse, so her immediate thought as I pointed to my right side was that my appendix had ruptured. Every bump we went over in the car had me crying out in pain. She hauled ass to the emergency room.

The doctors also originally thought my appendix had ruptured. Until they did an ultrasound.

I had 3 cysts on one ovary, 4 on the other. One, about 5cm, had ruptured, which is what was causing my pain. It took them 8 hours to figure this out.

At my follow up doctors appointment with my pediatrician, he told my mom I can't possibly have pcos because I don't have hairy nipples. I remember this conversation vividly. This was also the day I got on birth control. Apparently, it could help stop new cysts from forming.

I recieved no education and no diagnosis.

Years later, senior year of high school, debilitating periods were second nature to me. Throwing up, and then passing out on the bathroom floor were regular occurances. That was IF I got my period. Even with the placebo week on birth control, I still had very irregular periods. I just kept being told that it's normal. Switching birth controls. I ended up on depo Provera.

I originally attributed my 80 lb weight gain to the depo. So I switched back to the pill. Lost 0 weight. I eventually found a nurse practitioner who actually listened to me, ran blood work, and diagnosed me with pcos. This doctor has since left my state, so I am once again without anyone who will listen. Searching for a new one as we speak.

I remember being SO angry, because this was something I could've been diagnosed with in 8th grade. The painful periods, the cysts, the weight gain, all might've been able to be prevented if that original doctor knew what he was talking about. I was able to get my medical records about that day. They KNEW. And yet they didn't diagnose me, because my nipples weren't hairy.

Fun fact: you don't need to be showing signs of hirsutism (excessive hair growth) to have pcos. But that doctor didn't care or didn't take the time to research.

So now, I'm 25.

I've been on and off metformin, diagnosed pre-diabetic. I work out, daily, and do not lose weight. 800 calorie diets do not work for me. I've learned that this is very common for those with pcos. I am no longer on birth control. I was able to conceive and have a healthy pregnancy, which resulted in my daughter.

However, I still struggle. The biggest struggle I have is the fatigue, and painful periods. It got worse after having a baby. I was able to go from 250 lbs (post pregnancy) to now about 190ish. I am not certain what the exact number is, because I've given up on the scale (that bitch). I have not lost any weight in the months since then. I think breastfeeding benefited my weight loss more than anything.

The depression and anxiety have also been debilitating. Once again, all things that could've been prevented. I wonder how much different my life could've been if I'd learned about this in 8th grade.

I've also been diagnosed with Binge Eating Disorder. Caused by dieting or starving too much. I am currently recovering from that, and am now many months binge free. Did you know that if you have pcos, you're far more likely to have an eating disorder? I had no idea.

Well, tomorrow I'm beginning my PCOS journey. I had a 90 minute appointment with a dietician who specializes in pcos. And I'm going to share all that info with you.

I'm tired of finding website after website, promising free help with pcos but then "Hey, spend $300 if you actually want any info"

I pledge here and now that if this works, if I'm able to reverse my symptoms, I will NEVER sell the information. And shame on those who have.

My end goal here is to help people like me, who have struggled for years with no help.

My tiktok is active, search pcos.uno.reverse. The first video will be posted tomorrow (6/20).

Tomorrow, my life changes for the better. Follow along with me.

#pcos #weightloss #weightlossjourney #polycystic ovaries #polycystic ovary syndrome #healthy #recovering

2 notes · View notes

myownjadedpieceofmind · 2 years

Text

An *aha* moment.

And scroll by if you don't want to hear about it, but my health has been a huge concern over the last year or so.

The thing is, I was relating it to my back, my spine, and then they found the chiari malformation and so, we've been trying to understand that. Knowing that cutting my head open is the "treatment" for the problem, well, it's not my favorite bit of knowledge.

Let me go through a timeline- At the end of June, 2020, I was diagnosed with c-19. I had symptoms and low grade fevers that lasted nearly 5 weeks. I didn't go back to work until August 2020. It wasn't like I was deathly ill with it. It was an annoying cold, and reminded me alot of what it was like to have mono. The worst part was the headaches. Week 4 of c19, I broke down and went to the er in salina. They gave me a cocktail of medications to kill one of the worst migraines I'd ever had.

Since then, I've had daily headaches. Neck pains and lower back pain that feels like fire burning through my spine. My legs change colors when I'm standing up for longer than 15 minutes, I have crazy brain fog. I lose track of my place in a conversation easily, and have a hard time coming up with words sometimes. My vision is affected, and I have constant ringing in my ears. I could go on....but thats not the point.

I've been reading alot about the effects that c19 have on underlying viruses. If you had chicken pox, you carry antibodies for it, along with remnants of the virus, which is what causes shingles later in life. If you've ever had streptococcus infections, you carry antibodies for it, and carry the virus. If you've ever had any sort of herpes simplex (cold sores), or staphylococcus.... you get the picture. C19 has an effect on some people, activating parts of the immune system that starts to attack the body. Spurring on autoimmune diseases that people aren't aware they have. There are ALOT of people reporting issues like mine. Some are diagnosed with long haulers. Some are told it's anxiety or some form of depression. And, then others, like me get told things that have always been there, just never caused a problem til c19.

I was 14 when I had my tonsils removed after repeated strep infections. I was in middle school when I had the chicken pox. And I can remember when I was babysitting for a family, one of the kids I was watching had drank from my cup, and unbeknownst to me, had hsv-1. The number of times I've been bit by ticks, it would be crazy if I didn't carry some sort of tick borne illness. All of these things stay in your system for life, and are affected by c19. When you put your genetics into the equation, well...who knows what kind of monsters c19 might have awoken.

I'm not saying I've figured anything out. But, I'm saying I know how to approach my doctor and what I need to ask more questions about. I've been diagnosed with occipital neuralgia and chiari malformation, neither of which I've gotten much relief from. There is a list of tests they want to run to find out why my legs turn purple and I lose feeling in my arms, imaging of my spine to be sure there's no spinal fluid pockets causing the pain, or if there are places where my spinal cord has fused to my spine, blood tests and genetic tests to see if there are other underlying problems.

I really don't want to get my head cut open.

https://www.modernhealthcare.com/safety-quality/coronavirus-deranges-immune-system-complex-and-deadly-ways

15 notes · View notes

spacefoxy · 3 years

Note

I just read both The Eric Carr Story and Carrie Stevens book aswell and I noticed a pattern of behaviour with Eric. He seemed to have some type of Anxiety and it was social. Do you think he may also have had a disorganised attachment since how he and Carrie would break only for Eric to beg her to stay or do you believe his cancer may have been affecting his later behaviour?.

I feel like I need to start this one with a disclaimer too: I'm not a doctor or a mental health expert or anything of the sort so don't take anything I say as a fact or as me pretending to know the truthful answers. This is all just my own speculation and conclusions I've personally gotten into.

About the anxiety part, I have mentioned that on and off on my other blog so if I'm repeating myself, sorry! I believe he did have some form of anxiety which was fueled on by insecurity. He never felt on par with other celebrities and turned down invitations to parties etc. He felt more at home with the fans for sure because they were just "normal people" you could have a beer with and chat. To my knowledge he was never diagnosed with anything but he has acknowledged "an anxious energy" inside his mind which he got rid of by drumming himself to exhaustion. So he was prone to getting.. tense and nervous according to his own words.

About the dysfunctional relationship stuff... I don't know what exactly happened behind closed doors but from what I have pieced together he had a string of failed relationships where from what I have heard the women ended up hurting him in some way, was it use him for his connections and just flatout cheat on him with everyone possible. He had stated many times he was tired of getting his heart broken and was going to give up on relationships. Perhaps some of this past hurt contributed to his erratic behavior of calling off the relationship at the first sign of trouble to protect himself. Which he then later saw as unreasonable behavior and went back on it. As I'm not a doctor I don't know how cancer affects the mind or behavior of a person so I can't say anything about that. It can be possible I guess since ... well he was definitely sick at the time without knowing it.

I can't say much about if he did or didn't have disorganised attachment style because there isn't really any evidence one way or the other to form an opinion.

#asks

14 notes · View notes

myfootsonfire · 3 years

Text

My family has this really bad habbit where when I ask them for help with medical stuff, like talking to doctors about furthering my treatment and needing help with appointments and shit they go "but it's your body and your appointments and you need to take charge of them, no one knows what's going on with you better than yourself and you need to take charge or else you'll never get anywhere in life." But then they turn around and tell everyone else about how great they are for helping me while I'm in so much pain and can't take care of myself. And if as by of my symptoms get in their way, like if they ask me to do something I can't do, or if I get frustrated for not being able to move it's always "you're so selfish and only think about yourself, you never think about how your behavior affects me, and you always make up excuses to say no to do what I want you to do, you're terrible and abusive and your exaggerating everything to be lazy and you're never going to do anything with your life ever." Like yeah that's totally what familial support looks like. Especially since recently the family member in question went in and told my therapist a bunch of lies about me to have a Crisis counselor come see me ( I had an anxiety attack while she wasn't even in the house and she told them that I was behaving violently and hurting myself and others, when all I did was take a shower and watch Netflix in bed while I calmed down) and then she decided to diagnose me with bi-polar disorder (she isn't anything resembling a medical professional) and is now using it as an excuse to use "tough love" on me wherein she's neglecting me and purposefully triggering my trauma from years of severe child abuse because I apparently "live in a fantasy" and "don't know what the real world is like." Man idk maybe I really am growing crazy but it's almost like I've been in online spaces for mentally ill and abused people for nearly a decade, and I've been the only person in the family to legitimately study my numerous severe medical diagnosis's because I'm the only one that actually wants me to get better instead of being used my entire life, hmm maybe I'm wrong here but this to me sounds like a severe form of gaslighting and a severe cry for attention as well as victimising yourself against a disabled family members who is in your care because they currently can't take care of themselves. Man idk dude as someone who has had to be very introspective about their mental health and had always been very open about their experiences it's almost like if I actual had bipolar disorder, and it wasn't some tool you were using to try and discredit the fact that you're manipulating and abusing me, I'd have been diagnosed with it already, considering that I've been processed and screened for many things so far, and have been medicated and treated for all of them. Man, that's also a hugly disgusting way to demonize people that have bi-polar disorder, like of that's what you think all people with bi-polar disorder are like and that's what you need to do to then, then you should never be around a person with any mental illness ever! Sucks that you're literally my only relative I have left considering my mom is a homeless drug addict and lives in a trailer in the middle of the woods and my dad has decided to disown me because he is also a peice of shit that doesn't think any of my diagnosed medical issues are real and has literally threatened me and severely neglected my health because if that lol, and I literally have no where else to go because no one is fucking taking me seriously and I can't fucking move lol! This is so much fun I love this isn't life super great I love alive and being surrounded by so many supportive people in my life that are very considerate and caring of the fact that I am disabled it's so much fun yes sir the world is perfect and the only reason things are wrong is because I'm an asshole that has fucked up everything else on purpose because I want to do nothing with my life! Yeah makes perfect sense!

#venting #abuse #abuse mention #neglect #neglect mention #ahah sorry for venting here im alctually starting to go fucking insane with whats been happening with these people

1 note · View note

dangan-happy · 3 years

Note

To any of the DR1 characters (except Junko, sorry), I've really been struggling with talking to people. I want to be friends with people and I like talking to them, but I don't want to speak to them. I don't know what's wrong with me, the thought of talking to people makes me feel ill but I don't want them to think I'm ignoring them, because I love my friends. I don't know what to do. I don't want to be replaced. Can I have a head-pat and some advice? Thanks - sorry if I'm being a bother. - 🍬

Hi, this is 🍬 anon. I forgot the password but "HARK! That sounds like an ask that has just come in!" Sorry.

Hi anon, is it alright if I try to help? I have a lot of the same feelings, so I understand what you're going through. Nothing is wrong with you at all, I promise. Some people just need more time to recover after social situations. I would make it clear to your friends that you have a harder time socializing, and tell them that you do care about them, and you're not ignoring them. I know it's scary to put out there, but that can relieve any anxiety about that, since this will let them know what's going on.

Talking to them, even texting if that's easier for you, will help a lot, I promise. I don't think you're going to be replaced if you tell them how you're feeling. If they care about you, they'll understand. Sometimes, you just have to push yourself out there even if you feel ill. You don't have to do it often, or for too long, but make sure you do it enough for your friendships to stay strong. Afterwards, make sure you take the time you need to unwind and recharge and recover emotionally. I would also maybe look into having anxiety, if you haven't been diagnosed already. For me, it's an anxiety response, so maybe it's the same for you, and you can get some more help on that. I can't tell you enough that nothing's wrong with you. Lots of people go through that, so you're not alone, I promise.

Is virtual conversation easier for you? Like texting or talking over the phone? If it is, you might want to rely on those a little more so you can still get your communication in, even if it's in a different form. Yeah, I'll be happy to give you a head pat! You're probably taller than me, so you might have to bend down a little, but I'll try my best!

You’re no bother Anon, I’m glad to lend a hand in this case. In fact, Fujisaki has done a great job covering all grounds, but I’d like to input my thoughts.

Struggling to talk to people isn’t a bad thing, in fact, I go through the same thing in a similar way. I don’t normally go out of my way to speak to someone because of how much I keep to myself, but there are times where I am willing to do so on my own terms. I suggest seeking help from a professional, it sounds like you have potential social anxiety, but since I am not a doctor, I don’t wish to give you a false diagnosis based on something I’m not trained in.

It would be good to look into however, social anxiety can prevent you from engaging in social situations, even with people you’re already familiar with. If there’s a way you can tell your friends that you’ve been feeling afraid of replacement or explaining how you feel, I would go ahead and do that. But I would definitely say getting help from a doctor, just so you can have a insight as to if you have anything going on involving social anxiety or not.

A head pat? Interesting, you Anons never cease to amaze me with the things you request.

Of course you can have a head pat, I hope things look up for the better.

#danganronpa #danganronpa roleplay blog #ask #chihiro fujisaki #kyoko kirigiri #mod chihiro #mod kiri

5 notes · View notes

lena-in-a-red-dress · 5 years

Note

oh gosh. oh gosh. I've been thinking about getting evaluated for ADD/ADHD myself recently but I'm scared & anxious. I don't know who to go to - is any regular psychiatrist/psychologist ok or would I need to find one who specializes?? What if I'm diagnosed but they can't do anything about it?? What if I'm MISdiagnosed so they can make money?? What if they tell me I'm just an attention-seeking narcissist and there's nothing wrong with me at all?? 1/2

All I can share is my experience, which is unique to a) me, b) my area, and c) my country’s healthcare system. I mentioned my frustrations with my concentration/focus (or lack thereof) with my primary care physician-- the person who does my annual check ups. They should be your first stop, if you’re in the American healthcare system, as insurance companies often require referrals for specialist appointments, and even if you aren’t in the American healthcare system, your PCP should be able to point you in the right direction of where to go next.

I have a really great relationship with mine-- she’s been treating me for my entire adult life. She referred me to a neurologist for ADD/ADHD evaluation. When I arrived, the cute intake girl asked me a shit ton of questions about my symptoms. And in talking to her it really hit home how much and how long I’ve been struggling.

And the neurologist took one look at my intake form and said “you definitely hit the markers for ADD.” (and maybe adhd? It kinda blurred at that point, because ha-hey guess who’s having focus/attention issues?)

Next step? Medication.

Medication is where the stigma kicks in again. Picture this: I am at the neurologist looking for help. There is literally no other reason for me to be there. I am struggling, I need help, and still-- STILL-- when he mentioned Aderall my brain and my heart immediately wanted to bolt. Like, what the hell else did you think he was going to suggest, numbskull?

So next steps are getting a brain scan/EEG, to make sure I don’t have any other brain issues they need to worry about, and then I’m starting a low dose of Adderall, which is faster acting than some of the other options. By the neurologist’s words, I could be seeing improvement by the end of next week.

Your questions in your first ask are all anxiety, plain and simple (and guess how ADD can sometimes present in adult women? Ding ding ding! Anxiety).

A specialist will be the best person to help you, so even if they can’t a) they may at least be able to tell you what it isn’t, b) can point you in a new direction, and c) at least you’re taking steps to help yourself-- which is huge.

Lately I’ve come to suspect that the school fear about “overmedication” is an early split from what eventually became the anti-vaxxer movement, and fuck those guys. And keep in mind-- our conversation here is not about the virtues of forcing kids to sit still in a classroom for 7-8 hours a day, and the need for medication to help them do so. We are adults, struggling to exist as adults. If there is a tool out there to help us function more easily, we are entitled to use it, just as we are entitled to use anti-depressants or pain-relief.

(And PS if you’re wondering if you’re an attention-seeking narcissist, you’re not a narcissist, because narcissists don’t think about that sort of thing. I’ve had similar concerns seeking therapy and that came straight from my therapist’s mouth, so)

If you do seek help for it, I can warn you right now that it’s going to be a mixed bag of emotions. Yes, it’s a relief, to have a name and reason for why you/your brain does X, but at the same time? I had a cry session last night because if the diagnosis is correct, then-- I’ve been fighting it for twenty-plus years. Twenty years where my potential has been throttled by a condition I wasn’t aware of. Twenty years I’ll never get back.

And that’s heartbreaking.

The one thing about my appointment with the neurologist that sticks in my craw is something he asked me towards the end as we were wrapping up. He asked me “Why did you wait so long to get help?”

He meant it good-naturedly, and I was still reeling and dealing with the anxiety of everything suddenly happening quickly, so I didn’t claw his eyes out right then and there. But it still rankles even now.

I’m sorry, how in the world was I supposed to know that my wandering brain and hyperfixation on writing and skating (the only two activities in my life I can focus on with zero distraction), wasn’t NORMAL? My doctor asks for my weight every goddamn visit but at no point has she ever asked me how my focus is. No one ever asked me how many times I need to go back to my apartment in the morning to get the keys/sunglasses/breakfast I keep forgetting.

No one ever asked me how many times a week I forget my wallet in my other bag. Until my visit yesterday, no one ever asked me how often I talk over someone before they’re finished speaking, or finish their sentences for them. No one ever asked whether I fidget in meetings or if I can hold a goddamn conversation without my brain spooling out to think about that one story/movie/figure skating program/”if I have my protein bar early and skip the late session at the rink I can go to that one place I like for dinner tonight I think I’ll get the fish”.

So, someone please tell me how I was supposed to recognize any of this as not normal.

Long story short, here’s my takeaway: If you are struggling with anything that impairs your ability to function on a basic level, you deserve to seek treatment. If you read something online about a condition that rings true to you and your experience, you have every right to mention it to your doctor.

You deserve to live at your full potential.

28 notes · View notes

xhold-on-tightstay-stongx · 5 years

Text

I have another rant... sorry

So... I have been off my meds for a while... and it's been causing problems between me and my family... I'm not off of them by choice... I lost my insurance and have been having problems with the insurance company. So anyways, I baby sit some little kids that live next door to me and I do it so I can have some extra money and be an overall good person and maybe even be a good mom someday... but, the thing is, my mom and I have been doing nothing but fight the last few days and I often find myself wondering if it's because I haven't had all the medications that keep my brain functioning like a normal persons... even more, I know that it in all reality is my fault we're fighting so much. I spend a lot of time on my phone and doing stuff for other people that it's like I dont do anything for my mom. But I would do anything for her if she wanted me... I dont know if I am intentionally trying to build up walls around myself to make it less painful for when I leave or if I am trying to distance myself because I don't want her to see how shitty I've been doing lately. I love her with my whole heart that every time we fight I end up crying and thinking she hates me... which I know isnt true and I know that she loves me and supports whatever I do in my life. But we still fight and argue and everything is a mess because I cant function like a normal adult because I can't control my moods or emotions or stay focused on something. And that's the major problem for me... I get distracted and then I end up going into my own little world of whatever and forget what I'm supposed to be doing. I try to be a good daughter... I've been trying to be better than I was yesterday for the last 5 years. Some days I'm good at it... some days I utterly suck at it... I've only had one big achievement in my life and that was getting past the ideation and the self harm and made it to the next day. All my other achievements were pretty minor... I graduated on time... I started college... I turn 20 tomorrow... but honestly... what I really want is to be able to make my mom happy and it not be a constant fight between her and I anymore. I dont like fighting with her and I don't like knowing that it could have been avoided if I was just able to function normally. I would love for a day where it could be just me and my mom without her feeling bad or me feeling bad and for us to get along and for us to have fun together again... I miss being able to go do things with her and not stressing out about if things got done at home or if my dad will be in a bad mood when he gets home or anything like that. I want to be able to have my mom back to where we used to be... before I was fucked up and had to rely on my medications to make me feel normal and for me to feel like I wasn't on the edge of a mental explosion constantly or waiting for something to go horribly wrong. I miss the days when things weren't bad and when it was ok for us to argue about something and then we would make up with an "I'm sorry" and a hug. Now any more it's an "I'm sorry" and it gets twisted around into something even worse than before.

I know it sounds prolly stupid to alot of people and like an excuse for my actions and why I've been such a shitty person and lousy daughter but I have been dealing with Bi-polar type 2 for the last 5 years, anxiety, different forms of depression, insomnia and, constant migraines, I was also diagnosed with ADHD at 12 and have been on medications for all of this since the diagnosis. 5 years ago, I wanted to kill myself it was for reasons that I don't want to get into at the moment. I spent a week in the hospital getting the help I needed and my mom was always right there with me saying that we would get through it together. And we have, but lately it's just felt like she's tired of my shit... I try and get things done for her, but I either don't do it right or I start one thing then move to another then another and then another and one project never gets finished before another one starts or I get distracted by something and I forget to do what she asked...

I know that she feels under appreciated and like she does nothing but clean, but without her being the amazing woman she is I would never have gotten as far as I am now and I wish she would understand that.

I feel like such a horrible daughter because I can never do things the right way or I inevitably start a fight for something minor. And I was even told by one of my doctors that I tend to lash out at the people I care most about and trust the most as a defense mechanism and because I know that they wont leave me for it... but I still feel like I am the one who is the problem when I have little control over things that I do...

I hope people reading this will understand that I am not just some entitled little brat that is bitching because her mommy yelled at her.

I am writing this because I need to get what is eating at me out and hopefully someone will care enough to check in on me but if not that's ok too.

I also want people to understand something. I've almost lost my mom 4 different times. The first time was the night my little sister was born... my mother almost died that night along with my sister. She was in an accident and was taken to the hospital by ambulance and was really hurt for along time. Third time was an accident that should have killed her, it is a honest miracle that I still have her to this day. She was rear eneded at 55mph while she was at a dead stop and she suffered from head trauma amongst other things. The fourth was right after she was in the last accident. She had a severe allergic reaction to the nerve pain medication that they gave her. I said that I wouldn't be as strong as I was or where I am in my life without her. And that's why.

I am a total mommy's girl. And I can't imagine a world without her in it.

I wish she knew that though. I wish she knew that she is my entire world and my heart stops every time I hear sirens and that she is my hero. My mom is my best friend and the woman I look up to most in the world and some day I hope to be just like her. Strong and resilient. She's been my rock when my world was being swept away and she held my hand and told me that everything was going to be ok when I wanted to die. I wish she could see the amazing woman I see when I see her.

I know that this rant was a bit all over the place but I really needed to get everything out...

#possible triggers #trigger warning #rant #sorry i needed to vent #anxeity #bipolar #adhd #depression #my thoughts

2 notes · View notes

all-gods-children · 7 years

Note

(1/2) For the anon message thing - I've been following you a while and I know you have a health condition. I was wondering what has helped you deal with your health and if your physical conditions have also impacted your mental health? Do you ever get depressed and think "Why can't I be normal?" and feel upset at your circumstances? I'm sorry if this is a weird ask but my physical health has ruined my mental health.

(2/2) Everything went downhill after I was diagnosed with a physical health condition. I have severe trauma surrounding my surgery and sometimes regret having had it because it’s been a mess of pills and feeling mentally + physically like trash ever since then. I feel like trying to fix things ruined things more. If I had just died like I thought I was going to I wouldn’t have gone through the suffering I’ve been undergoing the past years. I don’t kill myself because I’m Christian but it’s hard.

Hey there! This isn’t a weird question at all. I’m actually gonna get really real with you for a bit! Sorry if this ends up being a super long answer!

So being sick isn’t easy. That’s just a fact that’s part of my every day life. Quite frankly, being sick absolutely 200% sucks. Hands down. I wouldn’t wish a physical health problem on anyone in this world. But personally, I have an outlook on my heart condition that I’d like to share with you in the form of my testimony if that’s okay.

When I was in middle school, that’s when it really hit me that I was sick and that I would have to have another heart surgery. And as soon as I realized that, I became very depressed. I couldn’t see a way out of it. I wanted rid of my body and everything that came with it. I wanted to be done with it all. I didn’t want to face what would inevitably come in my future. So throughout middle school and high school, I struggled severely with depression. I ended up cutting myself, and I got to the point where I just wanted to die.

Then I got to my senior year of high school, and the call from my cardiologist came that I would have to have my second surgery during the summer between high school and college. Because of that and a few other things that were going on at the time, my best friend all but dragged me to church with him. I’d been out of church for a few years, and the few years before those I hadn’t really been going regularly. Long story short, God used that church (which is now my current home church) to break me down and enter me into His presence for the first time in my life. And no, that didn’t magically take the pain and fear away. That didn’t magically fix my heart and make the surgery pointless. But it strengthened me in the knowledge that the One who created me was by my side and would never forsake me. It strengthened me in knowing that God shared my pain and His heart was breaking along with my heart. It strengthened me to know that He cared and loved me even when I felt worthless and tired and hopeless and even when I wanted nothing more than to be done with life.

Fast forward over 2 years after my surgery, and I still have anxiety over my health problems. When the littlest thing feels wrong with my body, I freak out. I still have days where I want nothing more than to be normal and healthy. I still have days where I just want to hide my scar and run away from what has happened to me in the past. I still have days where I never want to go to the doctor again or take my meds again. I still have days where I ask God, “Why me?” which is the question I started asking in middle school.

But you know what God did during my senior year of high school on that night my best friend dragged me to church? He answered that question for me, as He continues to answer it to this day. You know what His answer was? “I want to use you.” It was as simple as that, and yet it moves me to tears even as I write this.

I am currently a pre-med student, but my career path/plan is to become a pediatric cardiologist, the kind of doctor I’ve wanted to be since I was about 6 years old and I was able to understand that I was different from most kids. And in that moment God simply whispered into my heart a gentle reminder of what I wanted to do with my life. He reminded me that I want to do that with my life because that’s what He has placed on my heart. So if I want to go on to help those who are born with heart conditions like me, then who am I to question the single reason that makes me want to do that with my life?

If there’s one thing I’ve learned since that day that the news of my surgery came, it’s that God uses our pain and our testimonies for those around us. Sure, we grow from our pain and our trials, but God also wants us to use what we’ve learned to turn and help our neighbor as well. If I hold on to what I’ve learned through my trials and pain then what’s that doing to bring God glory? God used Jesus’s pain and sacrifice to shake the world to its foundations, and I plan to try to use mine to at least shake the world of my future patients.

Fun little side fact! When I was going through all the anxiety over my surgery, I often felt like God couldn’t possibly know/understand what I was going through. But did you know that the cause of Jesus’s death was most scientifically likely that his heart literally burst due to the increased physical demand on his heart and because plasma and fluid gathered around his heart which wouldn’t beat in the correct rhythm after so long on the cross. Here I was, thinking that God couldn’t possibly understand what I was going through, and here Jesus was, saving me from my sins while his heart was bursting. I’ve never been so humbled by any single piece of information in my entire life.

Sure, that doesn’t make the pain and the anxiety and all the suffering go away. Like I said, I still have rough days. I still have days where I’d give anything just to be healthy. But for the most part, I now wear my scar with pride and dignity in knowing that God is going to use it to bring Him glory. So even on the roughest days, I can look at the cross and say, “I’m hurting Jesus, but you used your pain to bring healing to this world, and my only prayer is that you do the same with mine.”

I really hope this helped, and please know that I am always here to talk about this kind of stuff (and just about anything in general really)! I’d be more than happy to talk about being sick and the struggles of it and my Christian outlook on it. I will be praying for your peace through Jesus. Please come talk to me if you need anything at all! I will always be here!

Much love and many blessings,~Haley

#haley answers #personal #religious #Religion #jesus #Jesus Christ #God #Walk With God #Christ #Christian #Christianity

20 notes · View notes

lyraeon · 7 years

Note

Hi! Sorry for intruding, and you definitely don't have to answer if this too personnal or invasive, but I've been wondering if my depression might be a bipolar one for a while now, only I don't always see myself in the way people talk about mania/hypomania, only sometimes I do? And the way you described mania being /straightforwardly frustrating/ sort of spoke to me, so I was wondering if you could explain what you meant by that? (or direct me to posts where you have?) Huge thanks!

Hello friend!

I’m sure I have other posts about it somewhere, but short of digging through my whole relevant tag, I wouldn’t know where to look for them. But I don’t mind explaining overall.

First of all, if your depression seems to come and go, but not necessarily be replaced by hypomania or mania, it may be something else. Seasonal Affective Disorder is the most common alternative, but Cyclothymia is also a thing, and should especially be looked up if your depression also never hits a bottomless pit level. Don’t fall into the trap of thinking “well, it’s not THAT bad, so I guess I’m ONLY cyclothymic and I shouldn’t worry about it” or whatever though!! That’s just the depression talking and trying to keep you down. Ignore it.

I don’t know if I get manic or hypomanic, doctors have consistently disagreed about it. But, I know I have two main modes of mania, though they can bleed into each other.

There winds up being talk about hallucinations, self-harm, and graphic nightmares in this, so if that’s gonna bug anyone reading this, J on past it

Hyperactive mania:

What is sleep? This is not me procrastinating sleep or being distracted by other things, this is me flat out not needing more than 3-4 hours of sleep a night and having trouble getting to sleep to begin with, not in an insomnia “I’m so tired but can’t settle down” way but in a “I don’t feel tired unless I drink or take sleeping pills or otherwise really wear myself out” way.

Zero focus - I have little to no attention span most of the time to begin with (I suspect I have ADHD but most doctors will be reluctant to diagnose that in addition to bipolar, since mania has a lot of overlap). This typically gets worse during mania; I will repeatedly get up out of my chair to walk laps around my house, often gesturing wildly and definitely talking out loud to myself if no one’s home. I’ll sometimes try to play music to get the energy out to that, but rarely get through a single verse before skipping to the next.

Hyperfocus - and when I do manage to focus on something, (which has to either be something I’m REALLY ENJOYING or something social) I will get dragged into it for 14 hours and only snap out of it if I need a bathroom break or something. The Sims is a common one, not just for me but for a lot of people from what I hear. I always know something was a hyperfocus and not a thing I really wanted to do in general because after 3 days - 2 weeks of the thing I won’t touch it again for months or years. My last manic fit involved playing a sim city phone game for 6-7 hours a day and binge watching multiple people’s entire hermitcraft 4 season. The one before that had me playing rollercoaster tycoon constantly.

sex drive - suddenly characters and celebrities I had not previously regarded as hot are hot. Suddenly I have 15 AO3 tabs open. I feel like people who know me well can notice my mania just by how often and what gets reblogged to my NSFW blog.

poor decision making - I’m far more likely to buy ice cream or alcohol or other things I don’t need to be spending my money on. I’m far more likely to give in to the whole not sleeping thing, or to take sleeping meds despite cutting it way too close to when I have to be up the next day. I lose my verbal filter. I still don’t know if the fact I don’t do anything life-ruiningly stupid is evidence I’m only hypomanic, not manic, or just my anxiety keeping me in check.

Intense emotions - I cried at a University of Phoenix ad yesterday y’all. I also in general am not one to cheer or yell at something happening on TV/in a video, but get more invested when manic and react on a level closer to when I’m actively playing a game or something.

But there’s also the frustrating side (not that the above isn’t often frustrating, just that the above are more associated with positive emotions or at least not a pervasive Stressed Out feeling)

Easily frustrated - I am not one to get mad, normally. I actually get criticized for just letting things slide that obviously upset me/”you keep saying it’s okay right after saying it’s not okay”. I don’t know how to handle getting mad due to gaslighting issues growing up that I won’t get into right now so when I do start getting mad, it tends to build up until I find myself tense and literally stomping mad and sitting in the car screaming in frustration (because if I scream in the house someone might hear me). I also snap at people far, far more often when manic, losing any patience I would typically have and sometimes going for passive aggressive gouges if what they’re annoying me with has built up over a couple days as opposed to instantly. For example, yelling at people who are in my raid group.

nightmares - dear god the nightmares. I will do things in them that I find barely or completely unquestionable in them, then wake up freaked the fuck out because I just - well, we’ll go with today’s example, which is that I fuckin shot my dog in my dream, and for no apparent reason! Death is a pervasive thing in these, including me getting jolted awake by my own death in them, but unstoppable torrents of water are also common as is things just not making any sense - an object I’m holding turning into something else the moment I try to give it to someone else is also something that happens a lot

tense - dear god do my shoulders and back hurt, and not my normal everyday chronic arthritis pain, because that’s in the joints. This is every muscle pulled as tight as it will go and locked, and often carries a sensation of “the only way to fix this is to literally claw them off the bones”. Upper back is the most common but my forearms come next (especially near my elbows) and every major muscle can feel that way if I’m far enough gone. This used to lead to self-harm in the form of me scraping at those areas trying to make the sensation stop (and has lead to weird masochism stuff), but it’s something I consciously avoid now. I’ll usually try to rub at them or stretch to relieve the tightness, but often sleeping it off is my only real recourse.

really, really, REALLY unable to focus - I can’t get through two minutes of a video without pausing it. I skip every song 4 seconds in and instead of just feeling like they don’t fit quite right, each song feels like it’s personally offending me by not being the right one and I eventually give up and take off my headphones in a huff. I’ll forget I was loading the dishwasher halfway through. I’ll keep doing one more little task and one more little task for hours to procrastinate simple things like eating or walking the dog. I always in general have trouble finishing my sentences sometimes, because I’ll lose words or I’ll wind up reading/hearing something mid-sentence, but it becomes every third sentence.

Itchy - everything feels wrong. My hair has to be pinned up as thoroughly as possible so it can’t touch my skin, my glasses have to be perfectly clean because the smudges will piss me off, my clothes have to be just right so they don’t touch my skin in ways that will make me jump/itch like if my hair touches me, any rough edge of my nails or cuticles has to immediately be chewed off, if there’s a weird hair or a zit or a scab anywhere on me I will be picking at it instantly, whatever I’m sitting or laying on is too lumpy, etc. My scalp itches regardless of when I last washed my hair, but washing my hair sounds dreadful because the sensation of wet hair weighing me down is even worse (vs it normally being a soothing sensation to me). My ears itch!! it’s maddening and distracting.

noise and light sensetivity - everything is too bright and too loud! I’ll have as many lights off as possible (sitting in the dark, showering in the dark, screens all as dim as they will go; I’ll often close my eyes or blindfold myself if I really need to concentrate on something I’m typing or listening to). I try to get white noise because background sounds like the dog walking around will drive me batty, but white noise will give the same “wrong one” sensation as music, and if I notice ANY repetition in the white noise (obvious bird loops for example) unless I have deliberately chosen a repetitive melody because it feels right, I will snap and have to turn it off and probably just cover my ears for a while.

The sensation that shit would suck less if I was drunk right now, because that would either “at least give me something to do” or “make all of this funny instead of annoying” (but alcohol only intensifies what I’m feeling, so if I’m “good” manic it makes me super happy and if I’m frustrated manic I just get angrier)

just an overall sense that everything is wrong and there’s nothing I can do about it and unlike when I’m depressed, wherein I feel like it’s all my fault and I probably deserve to die because of it, it all just pisses me off more and makes me need to get up and wander around. in the less extreme of these moments, I end up trying to figure out lists of what needs to be done, but getting frustrated trying to think that hard. In the worse ones, things will be blown out of scale and I’ll be plagued not just by the problems in my own life but by how fucking frustrating it is not to be able to fix, oh, our broken government, or how frustrating it is that I don’t have the money to just buy us a house right this second, etc.

hallucinations - this is top floor mania for me. The only thing above it is the roof that I will sometimes lay on at 2 in the morning, limbs spread as wide as possible for minimal skin contact, laughing uncontrollably on the inside while feeling paralyzed. My hallucinations are “mild” ones - I’ve only had one or two visual flashes in my life, everything else has been sounds, and it’s rarely been even words, let alone more. it’s usually alarms and sometimes music. I’ll hear my boyfriend’s alarm going off, or the fire alarm going off, or my own alarm going off, or my family’s burglar alarm going off, etc. This is one that meds have been royally good at keeping under control and I’ve only had breakthroughs of it when I’m also sleep deprived.

-basically, mania is fUCKING FRUSTRATING AS ALL GET OUT because you have all this energy but nothing FEELS RIGHT so nothing gets DONE, 99.94% of the time.

The additional problem for me with breakthrough mania - that is, symptoms that happen despite my medication keeping me mostly “normal” - is that it rarely brings any of the positive aspects that make being manic at least fun in the moment, if not sometimes genuinely worth it. I can get a LOT done when manic if I can take advantage of it before the bad symptoms set in, and I suspect a lot of my current writer’s block issues are because I’m not getting the same kind of hyperfocus days that I used to. But boy do I still itch sometimes, boy are my shoulders craving for me to go rub on a tree like a bear, boy is my stomach cranky because I’m so hungry but eating food sounds like a horrifying chore because what if it doesn’t taste right, etc.

I don’t really know how to explain exactly what I mean by the emotions feeling stunted, but it’s sort of like trying your hardest to find the can opener because you know it’s got to be somewhere, but it’s not anywhere you’re looking, except the can opener is your ability to be excited about this thing you wanted to do, or is your ability to be mad about something you know for a fact you’re pissed about, but you get stuck sitting there just dully frustrated instead because you can only read the label of the can, not actually experience the contents? Or maybe like opening it and finding store brand, “no sugar added” peaches instead of the really good del monte overly sweet stuff; your emotions themselves just feel lackluster compared to what you know they can be.

If a lot of this sounds familiar - if you’re like, yeah I get really annoyed easily and get sensory issues etc but I thought I didn’t get mania because I’ve never been pulled over in vegas going 110 in a 45 and all the media presents of mania is that and crazy chicks putting themselves $12,000 in debt overnight and waking up with no recollection of it - then you probably have hypomanic bipolar. If little bits sound familiar but they always are accompanied by existential dread and/or the pervasive sense you’ve gotta keep moving Or Else, it could be some sort of anxiety disorder. Parts of this list also overlap with autism, or with ADHD, or with BPD, just depending on which symptoms you have.

By my understanding, the one cornerstone of any form of mania is that you feel like you have more energy than normal; not more energy than depressed you, but an actual excess. That energy can fade fast/turn out to be just a sensation and not actual energy, but the sensation is still there, and usually fucks with your sleep.

Hopefully that helped. If it didn’t, or if it did but there’s something else you want to know, feel free to shoot me another anon or a message. I might be slow to respond because my sleep schedule is currently fucked to three more hells than normal, but I will definitely do what I can to help.

#bipolar disorder #mania #bipolar #mental health #lyra's gone full on spazzbucket #tw self harm #tw hallucinations

4 notes · View notes

swiftiesupportgroup · 7 years

Note

my anxiety has been really bad lately. No one knows about it and I've never been actually diagnosed, but I know I have it. The last 2 weeks I have been really struggling, especially with just starting uni this year. I've not been to one of my classes for the 3rd week in a row now because my anxiety has been so bad. Today I couldn't even leave my house. I know this is bad and avoiding it is only making it worse but I don't know how I can get through it. Do you have any tips for me? Thank you

Hi sweetie,

I’m sorry to be answering this only now. Unfortunately our members have been dealing with their own issues and handling their own work/school/life so most of us haven’t exactly been in a state of mind to give advice. I just reblogged some posts about coping skills for anxiety. I hope you’ve been able to find ways to cope with yours, but to answer your question, here are some tips for dealing with anxiety.

First of all, I’m so sorry hear you’re having a hard time. Sadly, most of us have been through it and it’s never easy.

So now for the practical advice:

I know it’s way easier said than done to let go of things and focus on something else, something positive. But if you can manage, it might be good for you to try.

*Though it’s important to know that if you’re at a point where absolutely anything is too much, this is not gonna work, I’ve been there too. In that case I’d suggest you see your doctor and ask for a referral for a therapist who can help you cope and manage your stress.

Something that has worked for me is creating distractions for myself. I’m really good at procrastinating, and I’ve learned that you can actually procrastinate your stress. Whenever I’d get overwhelmed and on the verge of a panic attack, I say to myself: ‘NO. STOP. Think about something else. NOW.’ Then I actively distract myself with music/ tv shows/books/cooking/organizing/tumblr/anything that occupies my mind fully. And in a matter of minutes I’m preoccupied with my new activity and actually not thinking about whatever is stressing me out. So I procrastinate my stress right until I have to do the thing that’s giving me anxiety. And this way I’m only fully stressed for a few minutes/hours in stead of actual weeks. So weeks of misery can turn into only hours, which is pretty good if you ask me.

Another thing to help you think about something else or feel a bit better is to spoil yourself. Don’t save that yummy treat for the moments you ‘deserve’ it, have it cheer yourself up. Use that fancy lotion or shampoo, get dressed for a glamorous night out (especially if you’re staying in), grab a hair brush and jump on your bed and sing your heart out to your favorite song, watch some videos of baby goats (that one works for me). They’re all small things, but when you find that little thing that always puts a smile on your face, do it.

If you can, squeeze in some more sleep. I know that can be very difficult but more sleep is always good, you’re less susceptible to be affected by hormone level changes through out the day if you had a good night’s sleep. It’s like, if you start off the day after a good night’s sleep, you have more back up energy to help you manage your triggers. Naps are also good, but not too late in the day because that will in turn disturb your sleep at night.

Nature can do wonders to manage stress. Exercise as well. Taking a walk, seeing beautiful nature stuff can be very relaxing, and again, whatever you like most. A walk on the beach, a walk in the woods, a hike, a run, a dance class, whatever you’re in the mood for.

And for all of these goes: Even if it doesn’t work, it’s more than worth the try to spoil yourself a little bit and treat yourself and show yourself some love in the form of self care.

If you find yourself doing these things without any results, or you maybe can’t even bring yourself to do any of these, I’d really suggest getting professional help. It’s not shameful to see a therapist, nor is it shameful to take meds for your illness.

Therapy and meds. From my own experience I can tell you that sometimes, when we live with mental illnesses or even high levels of anxiety for a while, we get to a point of no return. Brain wise. Your brain chemistry just doesn’t work the way it should when you’ve been subjected to prolonged periods of anxiety, stress, depression, ocd, ptsd and many more. Your brain chemistry changes and it cannot change back on it’s own. Not always of course, therapy can work wonders on it’s own, but sometimes at some point it really just is a matter of brain chemistry that needs help working like it should. I’ve been on meds for a while now and the difference it has made is unfathomable. Honestly I feel like a different person. I no longer get stuck in these negative thought spirals. Things that sent me into a blind panic sometimes no longer even phase me? It’s beyond anything I could have hoped for. And I could have gotten the meds sooner if I hadn’t been so scared of getting a diagnosis and actual treatment. It has been life changing and I’m in no way ‘cured’, I still have relapses and am nowhere near the energy levels of a healthy human being, but I also no longer feel like absolute crap all the time. My perspective has changed, it’s really unbelievable. And I would absolutely recommend asking your doctor about it to see if it would be something that you could benefit from.

So what I’m trying to say, there are things that can help, and the only way to find out is to try. And if you can’t, don’t be afraid to ask for help.

We all need help sometimes. And issues like these, well we’re not meant to deal with those on our own. Reach out to someone you trust and feel comfortable with, a friend, a parent a family member, a school counselor, and share your worries and your feelings and let them ease your mind. And if you need to, let them help you find the help you need to be able to manage your stress and live a happy life and be your best self.

So please know that you matter, you’re worth the effort, your joy is worth the effort. And there are so many people out there who want to help you, and actually can help you. There is no shame in reaching out to get better.

I love you, I know you can do this. And if you feel like you can’t, we’re always here if you want to talk and we’re always rooting for you.

Love,

Diana @coffee-midnights and everyone at Swiftie Support Group

#swiftie support group #anxiety #coping skills #755 #anon #answered

1 note · View note

putris-et-mulier · 7 years

Note

so I don't have an official diagnosis or anything but I know I've got depression (possibly other mental illnesses I'm not aware of), so I was wondering if that counts me into the disabled spectrum in your opinion? I never really know what the answer to this is because I relate to both the disabled and abled "side" concerning slurs, my way of thinking and other issues regarding ableism

The disabled community is split over this.

One group believes that you can only be considered disabled if you’ve been diagnosed with something. They do not agree with self-diagnosis and don’t want those with self diagnoses speaking for the community because they might not actually be disabled. Neurologically typical people, for instance, will constantly give themselves fake diagnoses and we often have to deal with people just claiming that they have anxiety or OCD or depression don’t talking over disabled people.

Another group believes that self-diagnosis is a valid form of diagnosis both because disabled people tend to do far more research on their disability then any doctor they’ll ever come into contact with and the most vulnerable in our community are black women because POC tend to go without diagnosis because of neglectful healthcare and women in general share that discrimination if they are below a certain income level, which if you actually are disabled will inevitably be very low because you’ll have been paying for your own health care.

How you identify yourself is up to you. Considere these thoughts of different disabled people and use them to help you think critically about your identity but in the end these are opinions and it’s up to you.

#Anonymous #Signal Boost™ disability #ableism #actually disabled #civil rights #cripple punk #Dear Christy

11 notes · View notes

not-poignant · 7 years

Note

pardon this question, you definitely don't have to answer it, but how did you learn or realize you were autistic? I've been researching symptoms and experiences and i know a few people who are on the spectrum, and i've been wondering if i am even though it doesn't present conventionally in some ways? My psychiatrist shut it down v quickly

Hi anon, :)

Okay, I have a long response so I’m putting it under a Read More. The first half is basically my journey to where I’m at now, and the second part is my thoughts on where you’re at, and how self-diagnosis is pretty cool in a world where a lot of the system is against adults getting diagnosed on the spectrum. Feel free to ignore the first part.

It’s a strange journey to how I got here. My folks actually suspected I had autism as a child, but because Asperger’s wasn’t a thing in Western Australia back then (early 80s), I had some borderline traits and then was tossed back without a diagnosis, and that was that.

I had an idea about 8-9 years ago, but never did anything about it, because I was wary of treading into a community I didn’t think I was a part of, and I didn’t want to offend anyone.

Then I had a friend who is also likely Aspie’s, tell me that she thought I very strongly fit the symptom profile of AFAB folks with Asperger’s (people who are women, or assigned female at birth, often have a different autism symptom profile to men, for a lot of reasons, and are often dismissed, because misogyny and a patriarchal medical system). Those symptoms were spot on, but again, I kind of ignored it.

About a year after that, I was having some massive communication troubles, and I ended up with a book on ‘how to communicate with your Aspie partner’ (or something like that, I can find it for you) and it was way more helpful than any book I’ve ever gotten on communicating. Like, way better than my ‘living with a PTSD partner’ better than ‘living with an X chronic condition partner.’ Like, scary accurate. After that, I started self-identifying as neuroatypical. I already knew that it is extremely hard for adults to be diagnosed on the spectrum, especially AFAB folk. It’s one area of self-diagnosis where I was like ‘the material is helping me and my life improve, therefore, I’m going to self-diagnose as having this thing.’*

(*I actually think this is one of the best reasons to self-diagnose, which is if the materials improve your quality of life once you engage with them.)

Some time after that, maybe two years ago now, my current psychologist didn’t do an official screening, but said I met all the core markers for high functioning autism, and had been treating me as a client that was neuroatypical for some time (with some success) even though she hadn’t told me that (she just assumed I knew I was on the spectrum) and we started talking about it.

I’ve never had an official screening, beyond what I had as a 3 to 4 year old. Recently - last year - my Mum found out in a weird weird way. A friend of hers met me twice, her son’s autistic (he’s low functioning) and said to my Mum: ‘I think your daughter has Asperger’s.’ Mum was like ‘haha no, she doesn’t.’ And then apparently this friend showed Mum sites on autism and Mum came to me and was like ‘ahhhhhhh I don’t want to offend you buuuuuut this seems, a lot like - this explains a lot.’ And I was like ‘oh yeah, totally, I’m totally with you, your friend is right.’ And Mum was like: ‘O.O’ and that’s the story of how we get along a bit better now and how she understands me a bit more, lol.

But here’s the thing about getting diagnosed as an adult, particularly if you’re AFAB (I don’t know if you are, but anyway) - it’s really hard, and it’s often really expensive. Currently, in Western Australia, a place known for having very high standards of public health access, it costs $1300 for most to get the official screening done, and most doctors / psychologists don’t offer it, and it’s not covered by almost all forms of insurance, nor is it covered by disability/health welfare. A lot of adults literally don’t have the privilege to afford diagnosis - it’s things like this which make me a big proponent of self-diagnosis, especially in cases where I know the western medical system is really bad at supporting adults with whatever thing the thing is. (ADHD is another, it’s really tough for adults to get diagnosed with this, and get appropriate treatment, especially based on country - it’s possible in Australia, it’s basically impossible in Italy because of cultural biases).

I don’t want to say your psychiatrist is wrong, I don’t know your situation, or your history with them, I’m not a professional of anything remotely medical or psychological. At all. Plus I feel it would be remiss of me if I didn’t say that there is a huge overlap between some high functioning autism symptoms and mental illness symptoms, and a psychiatrist is in the best possible position to know the difference.

I will say it’s worth looking around on Facebook for groups that might look at adult folks with Aspie’s or similar, and ask them what doctors or psychs they saw for diagnosis. We have to do similar here in Western Australia for Fibromyalgia, because even though typically you go to a rheumatologist (at least here) to get diagnosed, a lot of rheumatologists here refuse to even acknowledge/touch Fibromyalgia (it’s notoriously difficult to treat) - so I wasn’t diagnosed for 10+ years, despite actively hunting down a diagnosis for what I had (and I’d even ruled out Fibromyalgia for myself, because I’d been conditioned to accept my chronic, intense pain as ‘normal’ and ‘untreatable’).

Now I have a rheumatologist that diagnosed me, and I have a medication that helps me. That’s a miracle. And I got a referral to this rheumatologist thanks to a Facebook group / friend that were on the ball with this stuff. So I think it would be good to search around online. I actually hate Facebook, but god, it can be really good for putting you in touch with the right doctors, or the patients who see the right doctors/psychs/psychiatrists/counsellors etc. Like I said, I don’t know if your psych is right for you or not, but this is a world where second opinions count, and not all doctors are supportive of every thing. If I’d known I had Fibromyalgia 10-15 years ago, I could have been placed on Amitriptyline early and I may not have ended up on Disability via destroying my life via ignoring illnesses until my body literally couldn’t take it anymore.

My thoughts are…you’re looking for something that helps you, right? That’s why we need labels sometimes. Sometimes the medical profession won’t help us out with that, but that doesn’t stop you from accessing those books, articles, how-tos and so on in the meantime. There are a lot of people, regardless of age, who self-diagnose as neuroatypical in part because the social anxiety of getting diagnosed (a facet of being neuroatypical, among many other things) is just too damn intimidating. You can start looking up ‘how to communicate in relationships if you’re X’ now. You can really start testing all of that stuff out now. If it helps you, if it improves your quality of life (that’s the biggie), that’s like…the most important part imho.

Also, finally if you’re AFAB or a cis female, and haven’t already, google the presentation of Asperger’s in women. You may find the symptom profile fits you better than what you’ll find on the standardised Wiki page. Finally, even if you don’t have Asperger’s, that doesn’t mean you can’t be neuroatypical, or don’t have neuroatypical traits? I’ve had synesthesia all my life, that alone makes me neuroatypical. So it’s worth… remembering that no matter what the final label is that you end up with for yourself, in the meantime, it’s okay to validate those parts of you that don’t seem to fit into the norm of neurological behaviour. It’s okay to seek help and support for it, and it’s okay to give yourself permission to look further.

I wish the path to diagnosis was easier, no matter what the diagnosis ends up being. I have lived what it’s like in a medical system where doctors miss things or ignore things because it’s more convenient for them to do so. It sucks. Trust me, there are a lot of self-diagnosed people on the spectrum, who are right to have self-diagnosed. You’re not alone (I bet there will be other people reading this who can relate to you, anon), and I think it’s awesome that you’re reaching out / putting out feelers about this stuff. *offers hugs*

11 notes · View notes

eds-zebra-warrior · 3 years

Text

Ehlers Danlos Society Awareness Month (Day 31 Community)

Not all health conditions have what they call a community or a group of others with the same condition coming together as a group to be with, support and help one another. Let's be honest, most conditions don't need a community. There's a lot of conditions that are very cut and dry and easy to understand. There's a group on Facebook for everything but I can tell you right now there's not going to be a ton of people in a Hemorrhoid support group. The EDS group is a very close knit group with much value and importance to those who are part of it and I'll be explaining some of those reasons.

Of course one of the most obvious with having a rare disease is to be able to meet someone like you. To know others exist and to share similar experiences with. You know you can always find someone there that truly understands what you're going through having a condition so disabling you tend to lose most, if not all of your friends, some even lose family. Rather it be due to lack of understanding, lack of belief, fear, or any other list of reasons it seems to happen to all of us. So this is a way to make friends just like us. Friends that won't resent us for the physical abilities we have lost or the lifestyle changes placed on us by this syndrome.

Another reason is well because it's rare. It's surprisingly difficult to find any good information about EDS on the internet when you first get diagnosed unless you know where to look. In addition to this being a condition that lacks studies and research it's also extremely complex. In fact before being diagnosed, even with going to nursing school, I had no idea something this complex existed. If you are ever trying to find reliable information about a specific aspect of EDS it may be really hard to find, especially if the topic you're looking for is very specific. You can go into groups. A lot of individuals have certain documents bookmarked or saved in a word document or spreadsheet and can lead you in the right direction. If we can't find a study done in something we can also use support groups to do our own informal studies. Just simply create a pole and let everyone chime in. Before you know it, if posted in a larger group you'll go check out your pole and may have two or three hundred answers to your question.

Next, with EDS pretty much any body structure is a free game which means lots and lots of comorbidities. A good number of comorbidities are common amongst us which means we always have someone to relate to and ask questions to. In addition to this you can expand your groups to include groups for people with those comorbidities further extending your knowledge and possibility of friends. Most doctors don't know anything about these conditions so that leaves it to us to learn everything there is to know about it. When you finally think you have read everything there is on the web, others read thousands of sites or journals you haven't come across and ones you have read they didn't know existed so it's all about learning together and having people who understand.

Being a condition that is so very painful and severely affects sleep as well as causing many of us great depression and guilt for what we've lost and the deterioration our body has been through as well as the feeling of loss. We feel guilty for everything we put out families through, for needing help, for canceling plans and letting people down. Not only as if what we once were has already passed away but also the loss of friends, many times every single one we had before this illness and sometimes family members. We grieve the loss and are angry to learn that people we thought were our best friends and would never leave disappointed in us like a used paper plate. This is also the time it dawns on us how many of these people used us when we were healthy to provide them with things we need. Most of us have OCD or are on the high functioning side of the Autism Spectrum so tend to take responsibility and do things right, including not letting down our friends and family very seriously. Most of us thrive on routine and rules and chronic illness often gets to a point that a lot of this is no longer possible forcing us to make decisions last minute, change them or cancel them last minute, not be able to complete things by a time we have set for ourselves etc and that's really hard. It's helpful to know others who are or have been going through the same thing and to know you're not alone, not the one letting yourself and others down and to be told it's okay and it's not our fault.

The majority of us also have Medical Trauma Induced Complex Post Traumatic Stress Disorder. We spent years of our lives rather you're lucky and got diagnosis in two years or ate 70 and have spent the last 55 years actively seeking a diagnosis we all have to fight for one, to see doctor after doctor and oftentimes the worst part of it all, be miss diagnosed with psychiatric disorders such as anxiety and Conversion Disorders. These are extremely dangerous and life threatening diagnosis for us because it essentially closes the door on even looking for a cause of what is going wrong with us. Conversion Disorder is a Diagnosis given after all other conditions have been ruled out the problem is, doctors use it as a crutch to not have to deal with us. We are also superstars, especially in the beginning at having beautiful results when it comes to basic blood tests such as a CBC. The problem is, again, doctors are known to cut corners because they like the majority of mankind are lazy creatures who tend to want to just get the job done. It doesn't matter if it's thoroughly done and done with utmost care to put as much effort into it as they can, it's just done and to them done is good enough so they do the common tests and call it done, close the book and slap a label of conversion disorder on us that follows us around for life for every other doctor to use as an excuse to say they are done too. It takes years to find a doctor who is in it for the better of the patient; one who is up for a challenge; one who is willing to do more testing and testing that is more advanced and most importantly, a doctor who believes us and is willing to go the extra mile. It's when these less common tests like a Tilt Table Study, Gastric Emptying Study, Urodynamics Testing, Upright MRIs instead of doing them in the prone position, Sweat Testing, a Sitzmark Colon Transit Time Study, a 24 hour urine test to measure histamine levels, skin biopsies and ultimately EDS Testing via either the Brighton score system along with a through study of the body and some questions used to determine a positive or negative diagnosis or Genetic Testing to determine a type of EDS that has a genetic mutation that has been discovered. Not all forms of EDS have had their genetic mutation discovered yet which is why the other study is so important. There are more tests that can be utalkzss than the ones mentioned but as you can see, none of these are tests that are done on a routine basis and a lot of doctors don't want to deal with them slapping the psychological, "all in our head" diagnosis on us prematurely.

This results in us without a diagnosis for what we have going on with our body. When this happens we aren't receiving treatment for the symptoms we are experiencing allowing them to escalate. To make things worse we are often given the wrong treatments, handed antipsychotic medications that cause even more adverse symptoms and don't work. When they don't work the doses are increased higher and higher resulting in more to go wrong with our bodies. This also closes the door to treatment causing doctors and hospitals to dismiss life threatening issues, sending us home when we are actually so sick we should be in the ICU. I myself was declared clinically dead at least 10 times before my diagnosis, four because my heart stopped and I went into cardiac arrest and the rest because my blood pressure would drop below 60/20 which in the medical field is a pressure that is considered legally dead. With all but one of these I was sent home within an hour to a few hours of it happening simply told that was weird and sent home on paperwork for Conversion Disorder, Hypochondriasis, or some other psychosomatic disorder and is I was lucky this would sent me discharging me with a diagnosis of low blood pressure and that was that. One of my codes my mom was in the room, thank God for her. When I code no one came. My mom went running down the hall begging for help pleading for a nurse to help because no one was running to my room. The nurse told her I'm probably faking it and just pulled my leads off and told my mom just to ignore me because people like me feed on attention. My mom ran back to the room and thank God had some medical training as a girl scout leader because she had to take first aid and CPR. My mom brought me back. The nurse walked in right after and checked my wires. They are still in place. My state as well as several others protect their medical personnel against malpractice suits so there was nothing we could do. I've been sent home with gastric ischemia which is a life threatening condition where the blood pressure increases to dangerous levels in the intestines. It can cause the pressures to get so high it bursts and dissects blood vessels in the intestines causing a person to bleed to death. I was sent home with a diagnosis of General Psychosis and Anorexia as well as treated for anemia and vitamin deficiency. They blamed it on anorexia, not the fact I physically couldn't eat and was having bowel movements that were nothing but pure blood that everyone. Refused to look at. I had an allergic reaction so bad it almost killed me and was sent home diagnosed with conversion disorder and sent to my doctor who wanted me in ICU but upon refusal from the hospital to see me again even with my vitals so poor my doctor had to take care of me basically sending me home with what I called a take home hospital and working with my mom over the phone to take care of me available all hours of the night. I had a nurse try to give me 50 times the dose of this same medication that caused this. Been sent home with intestinal blockages, hernias, extreme dehydration, a UTI after they said the results came back negative only to get them in the mail a week later to see they were positive and by that time my UTI was so severe I had a kidney infection and was in kidney failure. I've sat there days and nights in a hospital bed where nurses refuse to answer my call light saying I have a conversion. Disorder, don't need to be there and I'm wasting their time and resources taking up a bed for someone who is really sick and that they won't be coming anymore the rest of the night not knowing I was one of the sickest ones on the ward and just misdiagnosed. I've had nurses rip IVs out of my arm, ya know how they push you to your car when you're released? There are a lot of times they pull my IV, tell me I'm not sick anyway and can do it myself having to take multiple trips to get my personal belongings out of my room. When I lost the ability to walk I had multiple doctors tell me I could and would pick me up, put my feet on the ground and the. Let go of

dropping me on the floor. This happened a lot at OSU with their doctors. Again and again dropping me and seeing I didn't have that natural response to catch myself and went straight into the hard tile floor with my fragile and damaged connective tissue would they say hmm. You really can't walk then send another doctor in who would do the exact same thing. I got picked up and dropped four times by four different neurologists just in the first week of being paralyzed and it's happened time and time again after that at other neurology appointments. I could go on and on. This is the stuff a lot of us go through. It's extremely common with EDS, most of us have complex PTSD.

Most of us have an extreme fear of going to the hospital because that's when we are at our worst and at the same time, a time we get treated worse than anywhere else about our chronic illness. We go in knowing it's a game of Russian Roulette with a really high chance we will be sent home sicker than I came in. Worst of all, there's no way to treat our PTSD because it had to be treated by a doctor, the people we have the least trust in. Not only that but the cruel mistreatment never ends. Every hospital visit. I have had good nurses before but I have never gone to the hospital once where I can say everyone was good. I hear a lot of healthy individuals say endless good things about the hospital staff they had or they have some reason they have to go. When you have a rare invisible illness like EDS we aren't given that same care. The appalling lack of medical care never ends therefore it's impossible to even treat our PTSD. It's not like someone in the military who is in a war and when the war is over, it's done, they never have it go back and can get treatment and start to heal. It's like having to live the rest of their lives in that war as a POW who has been captured and imprisoned by the enemy and every time they get out they are found and imprisoned by another enemy and another enemy and then going to see a psychologist who happens for this only to find out the psychologist is one of those enemies from the other side who captures and holds others line you as POWs yet wants to try to help you get over everything that has happened to you even though you're still occasionally been tending by someone else and beat up before getting away again. Seeing a psychologist for us just doesn't work. We have no trust in the medical field and the gross mistreatment and lack of care is never ending. The EDS community can relate to this when one else can. While the healthy people we know, the people we grew up with, who became nurses and doctors themselves get mad telling us those doctors and nurses are heroes, they can do no wrong. That stuff doesn't happen, they are made up of the most caring and compassionate individuals. Those in our community and other rare or invisible disease communities know that degree of mistreatment all too well. We know the truth about the medical field.

We know they are no different than any other company. Identical to the people making minimum wage in a more trivial position such as a greater at a retail store. There are the good ones who take their job very seriously and want to do their job to the best of their ability truly valuing hard work and are highly motivated individuals but most people at a job are just working because they have to. They have bills but if they were multimillionaires there's no way they would be there now. They want to get the job done and go home. It doesn't matter how they get it done, it's just got to be done. These are quantity over quality people. They take working smarter not harder totally wrong, defining it in their mind as taking any short cut necessary to get it done. Ya know how at most jobs they would have, for example, 50 people but there are three of them that seem to pull all the weight. The three everyone thinks takes things too seriously because they hardly leave their desk or station. They don't take the time to walk around socializing and joking around with their peers. When things get behind they are the ones who stress and work really hard to get things caught up where others say I'm not getting paid any more, I'm not going to bend over backwards and stress about if they aren't paying me more. The three people first to volunteer for overtime and the least to grumble of the boss asks them to stay over another 15 minutes to finish something while on the other days a boss May say that if you get your work done you can go hike and everyone rushed to gst the job done to get out the door while those three are left sitting there at their desks to get the job done right whole also correcting others work that was hastily submitted so they could go home or start the weekend early. Just because someone is in the medical field doesn't make them any different from those who hold other jobs. If most of them won five million dollars they would be out of there. Forget the two weeks notice, heck they don't have to work anymore. Someone else can take their patients. If they're told its slow and they can go home when all the patients are out then one more comes walking in the door as they are packing up their stuff there are a lot if doctors will look to the people who are still working and say hey, I'm about to head out of here, do you mind taking this last Patient? It's human nature.

As generations have gone on more and more people are lazy and the medical field is no exception. When you're chronically ill and have spent a lot of time in the hospital it gets really easy to spot those three people. The ones who if they were multimillionaires may cut back their hours but would never dream of leaving their job because their job means more than money to them. They take great pride in making people better, getting them diagnosed, saving lives and they can't see life another way. Those are the good ones. The good ones line any other job. They are far and few, they pull all of the weight, are walked on by other staff members, their managers usually fail to see their accomplishments as they don't spend a lot of time just hanging out with workers at a patient's expense. They are the ones who will advocate and fight for their patients to all ends but like any other job, maybe five percent or one percent or any other single digit percentage of the employees are these people so EDS patients my get one person on their care team that is amazing, maybe two but will never get a whole care team and it seems like the good ones get more far and few the higher the position. I've had more caring and compassionate house cleaning staff. STNA's, more good STNA's than LPN's, more LPN's seen to be there for the patient then RN's and more RN's. Doctors.

I don't think I've ever had a bad Volunteer at a hospital. The volunteers just love to be there for the patients, to put a smile on their faces and to know they made a difference in our lives. Rather it be to bring us a coloring book and crayons, their Emotional Support Dog around to visit us (which is my favorite) bring us a warm blanket or fill up our water containers. I've had one bring me a card and a flower in a small tube of water. The volunteers are there because they want to be there, not because they have to be there. It seems like the higher the person is on the pay scale the more people are in it for the money. Money talks even if it's at the patient's expense and usually if you have a complicated or invisible illness like EDS you are the expenditure. A community is important to know we aren't alone, to share their experiences, some in the group have become medical advocates and will fight for others in their area who can't get the help they need. These advocates, especially the ones with lots of training are invaluable to the EDS community. They may not be able to fix our problems but it's nice to know there is someone out there who tried. When you're at your worst advocating for yourself is extremely difficult and sometimes impossible and oftentimes our families don't do a lot of research on their own so aren't able to advocate for us so having someone who can is more beneficial than words.

As you can see there are so many different reasons community is important and vital to all of us. Some use it simply as a way to relate or a way to make friends like them after losing the friends they had before their health declined to the extent their healthier friends no longer could relate to them and left. Many are involved in the community to gather information and gain knowledge about their conditions. Support groups are also there to talk, especially with so many who have PTSD. We can't trust a psychologist, psychiatrist or therapist as they are medical professionals and talking to a live person is more fulfilling than writing a journal that no one reads. Sometimes it's as if these individuals, having gone through this themselves, know just want to say and how to help us. Some are there as a medical advocate in their area. Someone who can be there for them in medical situations or even just to give them advice as to what to say to make doctors listen, direct them who to contact if they aren't receiving appropriate care and what to do or ask for from our medical personnel. Some even use these groups to find names of doctors that work with EDS patients or places to go where they may be able to get help or even ideas of what treatments work for others with similar comorbidities. There's even a few groups out there run by people who were medical workers before EDS ravaged their body to an extent that they had to leave the field. It consists of disabled nurses, doctors, radiologists and various specialists. This group works to tell us if we need a second opinion. We can post test results or imaging onto the page and since legally they can't have a diagnosis since they aren't currently working they give what's called a "non expert opinion, telling us what they see or would suspect and if we need to see someone else. I find all of these viral and that's why I see the EDS community as not an invaluable and essential part of my life and wellbeing as an individual with Ehlers Danlos Syndrome.

#myEDSchallenge #myHSDchallenge

0 notes

myvelouri · 5 years

Text

I'm having a slight break down. This is going to be way too personal

If anyone is allowed to hate their life (trust me there's a lot of people who are) then it's definitely me.

I'll tell you why. First of all, why should I care about this? I say that to myself, but I care a lot anyway.

I've never really been able to have sex like normal. As in, my body just fucking sucks and does weird shit. So, I've said it before. If I have sex or masturbate for more than 2 weeks, my skin suddenly becomes really oily and I get these hard bumps that eventually turn into fat ass PIMPLES and often times cysts. And yeah, they have scarred my face permanently. I get this on my fave, my back, bottom and arm pits. If I stay abstinent and don't jerk off or ANYTHING, I have the most perfect skin. (The permanent scars are still of course there and many have accumulated). And I just feel like this isn't supposed to happen, this isn't supposed to be real, doctors say it's impossible, yet it's happening to me and it's dead ass real. I've done many experiments and changed the variables like a science project, and it WAS one. I can prove this happens to me. But it's not about you believing me. I'm extremely... Heart broken that this is happening at all. My heart starts to shake. Because this seems unrealistic. Still, 15 years later. I still have to deal with this. To cope, I tell myself, well, other people just have acne ALL the time without being able to stop it, but me? I know what triggers it, and I don't have acne at all, but if I don't have sex as much as I want to, then I'm good to go. But my god it's such torture. It truly is. All of my ex's and past FWB actually ARE aware of this "condition" I have. They seem to be totally baffled by it too, and how real it is.

And it affects not just my own sense of freedom and enjoyment... But my god, when your girl is horny and she wants to fuck your brains out and you have to say "I'm sorry babe, I just can't... I can't right now, it'll be bad for me" it hurts the relationship wether she says "okay babe, I understand" or not. It just does.

And on top of all that, my dick size pisses me off. I'm 6'2", my dick should be huge. But it ain't. And here's another kicker, I can't fucking get hard. Imagine a 20 year with a fuck ass dick. Yeah, hi, that's me.

Although I stopped any kind of masturbation and porn for months at a time and it totally helped my erection.. it felt so fucking horrible. Wasting months and years of my life unable to just whack off or have fun having sex with someone I like and likes me.

It's cruel. It's so fucking cruel.

But to make myself feel fucking better, I tell myself, "hey, at least I wasn't born a pedophile, imagine how much worse that would be." And yeah. That doesn't even make me feel better anymore

My heart is racing now, as I type this.

My face in scars, my body just awful.

There's also the fact that I have a condition, a oral one, so, my mouth and jaws never fully properly formed growing up, and my face grew elongated and basically gave me a perma-derpy face. Picture Napoleon Dynamite, but brown, and fat. That's what the fuck happenened to me. It's a common condition. And you can see my school pictures every year from kindergartner to 5th grade and watch my face degrade and retard. It's fascinating to see. But I used to be a beautiful fuckin kid. This condition made me so ugly. I remember before I had it. In kindergarten and before, I have memories of girls all over me saying I was so cute. Girls asked me to marry them in kindergarten. But a few years later, those same girls didn't recognize me. It was traumatic for me. Big time. In fact, my heart is racing even faster right now. I'm gonna take a sip of my alcohol real quick.

Okay. So, on top of all that, I was a heavy kid. Well, luckily for me I'm a smarty pants and I was able to lose all my weight by 14 years old. Super skinny. But guess what? I have loose skin. It's rather mild but my god I cannot wear tight shirts at all. It's awful. I never take my shirt off in public. I've been working out and I can look decent in pictures in a few poses. But it's still horrendous in real life. You can see stretch marks too. I don't mind those.

But yeah. I've never felt free. I still have that insecurity and I usually try to hide my body if the wind is pushing my shirt into my body. I get anxiety and start sweating. It's just mental. I can't stop it, I can't okay?

And here's another thing. I was always really intelligent, very quick, and extremely funny. I used to be the class clown in my classes and even in my family (I have tons of relatives) and I used to be so popular on both of those social scenes. It was incredible. Girls would like me for my personality but wouldn't date or fuck me because they said I looked too ugly and goofy. Yeah, let me tell you, that took a long time to be okay with. I'm not okay with it still, but I won't cry anymore about it. So yeah, my brain, the only thing I cherished. I was amazing at video games, above average in everything I did, I used to help out my friends and family in video games and they'd be so impressed, they'd love me so much. I'd play online and people would go nuts at my skills, even when playing multiplayer games with family actually, I'd do some crazy fast reaction shots in shooters that was fucking incredible. I used to play professionally with a team I had too. I was looked up to in many ways. I was told that too. And so I loved my brain. I remember the quality of life, being capable of joking around, and it was so much fun, what a great gift of life. I'd joke around nonstop, riff with everyone, and I'd always be the one to win and end up making everyone crack up. Wow. That was FUN. It made life worth living and is why I absolutely adore comedy. But... I suddenly was hit with depression. I isolated myself. And slowly, my brain started to deteriorate. I have lost all of my big personality, humor (most of it is gone) my quickness, I'm terrible at games, my brain functions very slowly, I'm terrible at socializing (I used to dominate) and I can't study or pass classes like I used to (I used to with ease) and I can't remember things or memorize things at all anymore. Depression is slowly killing my brain, year by year. It's even worse now.

And now I'm finally old. I have nothing, can't do anything. My depression isn't mild. It was originally diagnosed as "severe depression" and it has killed me, who I am. The real me ain't here. I try not to say that as it makes my sister cry. But I died a long time ago. I'm just a shadow of my former self trying to make the best of whatever is left for me here. I have strong opinions on things, and I can't fucking even care anymore.

The worst part is just waking up. Every day. I hate thinking. But it's all my brain makes me do. And it's not even good at it anymore like I used to be. I wish it would stop. I'm scared to buy a gun. I was getting one for sport. To shoot targets. Not to kill anyone. I mean, it's good for self defense. But I just wanted it for sport. But I'm afraid. Because I think I really would shoot myself in the head eventually. I am so scared of that.

I'm tired.

I'm so very tired.

#personal #depression #me #relationships #heartbreak #heartache

0 notes