#chronic migraines
I’m getting an iron infusion tomorrow then again a week later. Hopefully that will help with my constant need to nap. But the pressure in my head is getting worse. I can’t get an MRI until this Corona shit calms down. In the meantime I’m fucking dying. I don’t know what to do. I need something to help with the pressure and pain. And I’m told to “hang in there”. Fuck you and fuck everyone for punishing me and trying to make me feel bad for attempting suicide.
When I was in partial people kept telling me how brave I was. Telling me that I’m one of the bravest people that they’ve met. What they don’t understand is that I’m not brave at all. I just don’t care about anything anymore. When you don’t care then what would you have left to fear?
I had such a rough day today. I’m in partial hospitalization (a temporary day program) right now and some other patients there really pissed me off. Talking about how they think “psychos” shouldn’t be kept with other patients when being hospitalized. “There should be another ward for people like that.” I don’t know why it bothered me so much. Shit like that usually doesn’t get to me. I haven’t suffered from psychosis since early 2018. But the way they were talking about it… Like they are so fucking superior. It just got under my skin. Then they were talking about smoking weed, doing shrooms and lsd at festivals. “Not like bad drugs. I don’t consider that stuff real drugs.” Neither do I. But what exactly are “bad drugs”? Huh Karen? It’s getting hard to think again. Fuck my clouded mind! I need help. I need to make this feeling go away. My head is starting to hurt again! I need some “medication”. I don’t know where to get it anymore. I’m starting to feel myself fade again.
I just want some fucking drugs, man. Just need to forget the reality of my situation for a while.
Midnight Prayers & Meditations Volume Two
The Lord has blessed me with much music for His glory through the risen Lord Jesus Christ in me. But He only directs me to publish what He wishes according to His plans and purposes.
It is as if the Lord uses each song or composition to teach me that not
Album 28 of Music Inspired by the Holy Spirit since 2013
Original Keyboard Instrumental Prayers Featuring the Various Instrumental Voices of Guitar, Strings, & Piano Solos Performed by Suzanne Davis Harden, through the Risen Lord Jesus Christ, Inspired by the Holy Spirit, to the glory of God the Father, In Jesus’ name, amen.
Midnight Prayers and Meditations, Volume 2, is the second chapter of…
I’ve been to the hospital many times, and I’ve had bad nurses and doctors and good nurses and doctors. My recent overnight stint had pretty decent doctors and nurses. As patients we will certainly remember the more unpleasant experiences and be rightly angry about them.
However it’s important to remember that not all nurses are the bully from school. Many are genuinely nice and caring people, like my aunt who was a maternity ward nurse for many years. Many of these people are put under pressure of a for-profit medical system that forces more patients on less nurses. We should be outraged at genuinely cruel medical professionals, but if we want to be acknowledged as human too, we should do the same for them and advocate for better working conditions for nurses.
Yeah they’re supposed to be professional and not be rude but is anyone truly perfect at the end of a double shift with double the work? And some nurses are disabled too. I’m not against venting against terrible nurses but when we act like the problem is just the wrong people going into nursing we ignore a large problem about the state of nursing jobs and overworked underpaid caregivers that ultimately hurts and potentially kills us. I personally don’t want to do that.
I had some GREAT nurses when I was in for my colonoscopy. After, in recovery, my nurse went so far as to spend 10 minutes using alcohol wipes to gently remove my IV bandage, because I told her it rips my skin because of my fragile EDS skin. Did she have to do that? No. Did she have other stuff to do? Yes. Did I really appreciate it? SO MUCH YES
When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.
No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.
FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.
DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
It’s 4am and I’m up because my stomach is not happy. I don’t know how I’m supposed to wait until December for my colonoscopy when every time I eat I get cramping and diarrhea. My health is still going downhill very quickly, and my meds don’t seem to be helping much. I’m going to email my EDS doctor and let him know what’s going on, because at this point. I feel like we need to re-evaluate what we’re doing to treat my condition.
I dislocated my middle finger and it feels like my hEDS is trying to tell me something.
I once dislocated the top of my middle finger whilst wiping my ass. No joke, I’m 100% serious. It hurt so much, and I don’t have splints for those joints because they really aren’t an issue for me (usually)
Sup zebras, I’m starting an EDS YouTube channel. It’s called Braced For Impact (because this bitch is buying new braces ever other week it seems). No videos yet, but I just got my new phone, so let the filming commence!!!
What makes you vulnerable makes you beautiful…there’s a word for it: authentic
Vulnerability is a scary thing. We don’t want to look weak. We don’t want people to pity us or judge us. We know we can’t be perfect, but we don’t want to seem too imperfect.So often, we think our imperfections are our flaws. However, we shouldn’t confuse the two or make them interchangeable. Because our imperfections…
The Reasons I Sometimes Don’t Practice What I Preach
Why is it that we can urge people to take control of their health when sometimes we aren’t even taking control of our own?
Do you ever catch yourself doing this?
This is me calling myself out on doing it.
Recently, I have been ignoring new symptoms or pain and procrastinating making new doctor appointments because I’m afraid of hearing a new diagnosis, or having a doctor tell me I that I need…
Warning for Starkid fans planning to watch Episode 3 of Nightmare Time for the first time tonight
There are a lot of flashing images in Killer Track! If you are prone to seizures or migraines, please take caution!
Migraines are evil, sometimes you’ll feel like you took several knives to your face and it’s because it’s windy out.
