Undiagnosed

Been struggling with different symptoms for 3 years now. First diagnosed with chronic migraine, then ebv, then pcos. Lately things hadn't been adding up. We're suspecting pots, perhaps lupus, or other autoimmune. It's been kinda tough... the anxiety is the worst:(

#PolycysticOvarySyndrome #POTS #AutonomicDysfunction #ChronicEpsteinBarrVirus #Migraine #ChronicVestibularMigraine #Undiagnosed #Lupus #ChronicFatigue

What's hardest for me as an undiagnosed patient is the feeling that I have no place. I'm too healthy for the sick but too sick for the healthy. I'm expected to do everything everyone does, keep functioning, in a body that is just broken. I don't have a valid medical ticket to validate and excuse myself

#Undiagnosed #POTS #AutonomicDysfunction #ChronicFatigue #Migraine #ChronicVestibularMigraine

Been trying to prevent the er with communicating with my docs and being assertive. Even when admitted into the hospital I was being assertive with them. With the lack of availability of staff and budget cuts it has been hard trying to get home health covered by my insurance. I can’t afford private pay. I have been disabled for a long time. I only get Medicaid and SSI because my disabilities happened at age 23 not before age 22 and I haven’t worked enough prior to qualify. I was working prior to Covid. I got a lot worse since then but I’m still trying to finish my bachelors degree so I can work again. I need help at home with everything right now. When I was getting discharged and finally able to get dressed I hurt myself in the bathroom. I still need help with everything and am just almost as bad as I was coming into the er.
I reached out to my brothers saying dad and I are very stressed and need help. He can’t keep up with everything around the house ontop of taking care of me 24:7 with everything. It’s very overwhelming and fustrating handling this all by ourselves.
They told me I should went to rehab facility and demanded it and I need to move out. I told them I have been trying to get help before it got this bad. I get passed around. Even my docs and the social workers couldn’t find anywhere to go or have home health come in. Their is no other options.
They told me to hang in there and will call me tomorrow when have a chance. My anxiety is through the roof. No one has been listening that things are very bad bc I can’t get help. I need help right now. I don’t want to keep going back to the er. I’m doing everything I can to not crack. I have been pro active assertive and persistent. Things haven’t gotten better. They’ve gotten worse. I’m trying not to sink. I just keep treading water not moving forward. I’m exhausted physically mentally and emotionally. Nothing is working. I’m not a major priority when I should be.
Even in the er I had true serious emergency and didn’t get attended to fast enough when the er wasn’t even super busy nor had life or death situations that every second counts comes in. What not being able to move nor being able to not have bladder and bowel control with that much pain doesn’t count as an emergency when I was able to walk and even pee that morning? Having ptsd flashbacks with this all doesn’t help either. I’ve literally been screaming for help demanding it and not getting it. Our healthcare system is getting worse instead of better.
Government services for people who need them are getting taken away or changing their qualifications for people not to receive it who desperately need it. I’m scared for what America is turning into and will become in my future. Will I even be able to survive down the road? I should have accessible healthcare that’s affordable for all my chronic conditions but I don’t. Things literally changed overnight for me 15 years ago and slowly got worse. Before then I was a very healthy 23 year old. I’m now 38 years old needing the most care I have ever needed in my life and not getting it. I have lost friends over the years due to my health. Don’t want to lose my family as well.
I don’t see any light at the end of this tunnel anymore. I don’t want to be in a nursing home for the rest of my life with not getting proper care there due to lack of staff. It happens every day bc not enough help and staff don’t want to do something that’s not their job. What happened to people being decent kind caring and hardworking wanting to help others? #CheckInWithMe #MentalHealth #IfYouFeelHopeless #Anxiety #Undiagnosed #ChronicIllness #ChronicPain #Depression #FamilyAndFriends #Trauma

I’m here, trying to do better, to hold it all together under relentless pressure of life, moving through a world fiery in beauty, that I can now comprehend in multiple levels.

My intentions are not to dishearten or put down but to encourage and provoke deep thought, to uncover the buried emotions, face the reflection in the mirror, rub some dirt in the wound, and move on - in kindness.

I aim to be as transparent as possible about my own mental health journey as I experience life, as difficult as that may be. I want those who read and/or relate to what I write to be confident knowing everyone is different, everyone is going through something, and it’s okay that you’re going through that something. What matters is how you handle it. (not me trying to pep talk myself also.. 🥴)

I’m writing solely for the sake of swapping stories and sharing knowledge and helpful tips.

These notes are put in words to the best of my ability in hopes to give readers a ticket to ride on the literary emotional roller coaster that is my life as I live it (when I am quick enough to document it before it disappears from my mind forever).

^^ I attempted to write a bio, but it turned into info dumping and over sharing 🤦🏻‍♀️, so now it’s just this post..

enjoy. 🫠
m_o

#MentalHealth #AutismSpectrumDisorder #ADHD #Anxiety #depression #neurodiversity #Undiagnosed

I’m here, trying to do better, to hold it all together under relentless pressure of life, moving through a world fiery in beauty, that I can now comprehend in multiple levels.

My intentions are not to dishearten or put down but to encourage and provoke deep thought, to uncover the buried emotions, face the reflection in the mirror, rub some dirt in the wound, and move on - in kindness.

I aim to be as transparent as possible about my own mental health journey as I experience life, as difficult as that may be. I want those who read and/or relate to what I write to be confident knowing everyone is different, everyone is going through something, and it’s okay that you’re going through that something. What matters is how you handle it. (not me trying to pep talk myself also.. 🥴)

I’m writing solely for the sake of swapping stories and sharing knowledge and helpful tips.

These notes are put in words to the best of my ability in hopes to give readers a ticket to ride on the literary emotional roller coaster that is my life as I live it (when I am quick enough to document it before it disappears from my mind forever).

^^ I attempted to write a bio, but it turned into info dumping and over sharing 🤦🏻‍♀️, so now it’s just this post..

enjoy. 🫠
m_o

#MentalHealth #AutismSpectrumDisorder #ADHD #Anxiety #Depression #Neurodiversity #Undiagnosed

Hi!

I'm new here. My name is Lynn and I'm 17. I deal with #EhlersDanlosSyndrome and #POTS along with #PTSD #BulimiaNervosa #Anxiety and #Bipolar1Disorder . I also have some sort of unknown #Undiagnosed stomach condition that's flaring up really badly right now and making me vomit and have a lot of pain.

I'm starting college at the end of the month for psychology.

Once I'm out of my mother's house, I'll have full control over my medical care and she can stop telling me I can't go to the doctor for certain things. That will definitely be nice.

I'm supposed to get mobility aids from one of my #Spoonie friends soon.

So yea! Feel free to AMA!

Hi, my name is MadAsAHatter.

#MightyTogether #Anxiety #BipolarDisorder #Migraine #ADHD #OCD #HidradenitisSuppurativa #ChronicPain #Depression #Undiagnosed

Hey! I am here to support you on your undiagnosed journey! I have Epilepsy and Cerebral Palsy so if you may have any questions or want to know more to figure out if you have these conditions feel free to reach out!

#MentalHealth #Undiagnosed #yourjourneymatters