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
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.
What the literal fuck is this nonsense? Who let this bitch practice medicine? Did anyone think to suggest putting some fucking medical evidence in this piece?
Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.
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.
Pic 1: A title card that says ‘basic respect for cane users’.
Pic 2: Not all cane users are: physically weak, slow, elderly. Some cane users can: run, lift heavy things, ride bikes, skateboards, etc. Cane users are not all the same.
Pic 3: Do: move out of the way for someone using a cane, give your seat to a cane user on public transport, offer to carry something for your friend or co worker with a cane, ask cane users what their access needs are, treat cane users with respect. Remember that not everyone with a physical disability uses a mobility aid.
Pic 4: DON’T: touch cane users without their explicit permission, make assumptions about whether someone ‘really’ needs their cane, give unwanted advice about someones disability, make a cane user feel bad or like they’re an embarassment. Remember: people might not use their cane full-time, you can’t know if someone is faking.
Lemme just say it again for the people in the back, GET OUT OF THE WAY OF PEOPLE WITH CANES/OTHER MOBILITY AIDS. I cannot even begin to count how many times people have made eye contact with me and then just. Continued to stand/walk into my way. Or shove me. I will hit you with my cane. And I will not be sorry.
Yesterday I was diagnosed with EDS type 3, and during that appointment my doctor said that it is likely I will develop further complications within 10 years. Currently I have chronic pain (joint and nerve), sublux/dislocations, migraines, sleep apnea, heat intolerance, intermitant gastric upset, and soft delicate skin, but no POTS or Gastroparesis, ect. Try as I may, I have found nothing on the progression of this condition, and I was hoping the vast spoonie community might have some insights.
This condition has already taken my independence, my college degree, and my active, pain free life from me, and I want to have a heads up if I’m going to lose more. The hope is obviously that I will not get worse, and that meds will help my pain so I can ditch my cane and get back to a semi normal life, but I’m a little too cynical for that right now.
Bringing this back, since I’ve been diagnosed with POTS, am looking for a GI because of worsening digestive problems and weight issues, and am getting a cervical and thoracic MRI tomorrow to look for structural issues that may be causing worsening migraines, skull pressure, and drooping during migraines. My tremors are also worse, and I may have periarticular osteoporosis (whatever the fuck that is, can someone enlighten me? My shit ass rheumatologist lied to me, told me I was fine, and then a year later I found out that she had lied and discharged me)
[ID: Illustration of a character with a pale white skin tone, brown eyes and long hair. She’s wearing a yellow sweater and a dark skirt and has deer ears and tail. Around her are items such as a cane surrounded by yellow flowers, an ukulele and painting palette, sunflowers, cake and drawings of dogs,duck and frog. There is a figure of a small character with long brown and white hair as and blue eyes in pink dress.]
As someone who has arthritis in the hips and is thinking about going from a cane to forearm crutches to support both sides, how would I walk with them?
I assume it would be like I was using a cane on both sides so left leg - right arm and right leg - left arm?
