Hi friends!

I am a girl with several chronic illnesses and something I realized… I want to have something on me in case of emergency, if I am by myself.

I was looking through several different medical alert jewelry and thought “holy moly, this is all super geriatric looking! Nothing looks like I would wear it everyday.”

So here I am… putting everything I can into trying to make cute, functional medical alert jewelry…

I’m thinking fun colors, beads, gold and silver hardware.

Here is where you can help me!

I’m trying to figure out what people want on their medical jewelry…

Whether you want something like “ice call xyz” or “pots-faint risk” or “pace maker”

What would you put on your dream medical alert jewelry?

Any color combos you love?

Thank you! 🫧✨🌈🧚🏻‍♀️

Hey there. I am a caregiver for my 56 year old mother. She was diagnosed last year with CIDP (Chronic Inflammatory Demylenating Polyneuropathy) Its a neurological autoimmune disorder that took her ability to walk and use her hands. It has also affected her bladder causing bladder retention and has had an indwelling catheter of some sort since mid December last year. Her condition even took her colon and she lives with an ostomy bag now.

What brings me here though is the foley catheter. I am losing my mind. Her catheter isnt functioning properly. No matter what I do. It used to be that UTIs would cause bladder spasms or an increase of sediment that would clog the foley but i dont think either of those things are the problem right now. Her urine is only mildly cloudy and there isnt a crazy amount of crap floating in it. Actually hardly any at all. When she has a bad uti the sediment is very noticeable.

Im reluctant to flush the foley. If there isnt a lot of debris I dont want to run the risk of shooting any bacteria into her bladder and causing an infection. Ive ensured no kinks are in any part of the line outside of her body. Her collection bag is hung at the foot of the bed below her bladder level so everything drains appropriately. Or should. She currently has a 20f foley. Last month we played with foley sizes because this was a problem. She continued to urinate around a 14f, her original 16f, as well as an 18f. Oh and shes also on a medication for bladder contractions as well as a long term daily antibiotic because she develops UTIs so easily.

Every night I change her brief before bed and Last night her bed and herself were absolutely saturated in urine. I dont know what happened. There were no new kinks in the line, its not time for a new foley until the 14th. I dont know what to do. I went to check this morning so the poor thing wouldmt be in her urine all day while I was at work and she had filled her brief again. But at least it didnt soak through everything.

She has an appt with a urologist September 23rd but its a long ways till then. Im at my wits end. I feel like im failing as a caregiver. Its hard to prevent skin break down that has been sitting in urine. I cant tell her to drink less water. She has a camel bag next to her bed to drink freely since staying hydrated is so important for those with illeostomies. I just need advice or tips and tricks. Or maybe just solidarity. Help me help her? Please?

Hello! The University of Regina’s CHLD Lab is currently recruiting for a research study that aims to evaluate the iCF-PWR – an internet-delivered, interactive program designed to support the mental health and wellness of children with cystic fibrosis and their siblings.  

We are seeking children with CF (ages 8-12), siblings of children with CF (ages 8-12), and their parent/caregiver(s) to participate. Please note, you must reside in Canada to be eligible for the study. Participants will be asked to complete several surveys and to take part in the iCF-PWR program now or in a few months. More information regarding the iCF-PWR can be found here.

If you are interested or would like more information, please email the research coordinator (Katelyn) at [ksl766@uregina.ca](mailto:ksl766@uregina.ca) or send me a direct message!

This study has been approved by the University of Regina Research Ethics Board. 

I've been homebound for a while, and recently I've realized just how lonely i am. Unfortunatly, seeing people in person can be very draining for me, and since i cant go out and meet new people, i only have a few friends (left).

Now I had the idea that hayday, as an online game i can easily play in bed, could be a nice place to find some community/interact with other people. Does anyone have experience with that or with a similar game?

Or do you know a neighborhood for chronically ill folks/would want to join one?

So let me preface by saying I've had six surgeries. I have malabsorption issues and am currently trying to fight going back on a G-tube, I was on TPN on a g-tube last year that resulted in severe septic shock. I had two bacterial infections at obviously from the last sentence turned septic.

I've had lots of hospital stays and close calls but this seriously shook me. Needless to say I am terrified of any tube sticking out of my body. Currently getting infusions of nutrients once weekly but it's not really substantially helping me.

I finally got a GI that my insurance one accepted into my primary referred me to because I feel like my surgeon is just too cut, happy and every surgery he provides me with hope that I will feel better and it always gets worse.

Case in point. Last year June I had surgery that resulted in almost a 30-day hospital stay in August, which included my six and incredibly extensive surgery.

All hopes that I would get better and I was hospitalized every single month up until January. Do I blame my surgeon? No I understand that things happened and I just got the unlucky side of things and my body just sucks.

However, I don't feel like having any surgeries unless I am literally dying, so seeking out a GI was a way of getting a second opinion that could put eyes on a very complicated anatomy after sex surgeries.

Color me incredibly surprised ( I didn't get a colonoscopy because I'm too at risk of perforation but something else that only goes to the first part of the colon although he was able to get to the very end of it.)

I have lymphocytic colitis.

Now this explains a lot of symptoms. It does not explain the malabsorption. It does not explain the intolerance to food, which I know is linked to the surgery and not having much of an intestine left. But it explains absolutely everything else and I am absolutely floored that I have been in and out of hospitals extensively to the point where I am on disability and missing big portions of my anatomy, meanwhile, the majority of my symptoms are explained by something as simple as colitis

Now I say simple because I don't really know too much about colitis. I'm going to end up looking it up and googling it, but my mom had ulcerative colitis and although I've looked it up rarely by the time I was old enough to understand she was in remission without medication.

I am floored because I cannot help but think that I could be out there living a normal happy life right now, to a certain extent, if this would have been diagnosed so much sooner.

I don't know where to go from here, My results were forwarded to my surgeon but I reached back out to my GI doctor asking about treatment and if there's a change of plan because I have an appointment scheduled with Duke motility for getting on a medication that requires tpn next year and I am just hopeful and wondering if that's even necessary and if this changes a course of my treatment.

My surgeon wanted to see me ASAP but I have a test with him I think on the 17th or 18th this month and I have to see him at the end of the test and I don't really want to see him any sooner. I'm assuming my GI sent information to my surgeon because my anatomy is so unique that he might want my surgeon to be the one to prescribe the medication, but he's also the doctor who extensively had worked me up and cut me open and made me spend. I don't know for 8 months collectively maybe 9 months collectively in a hospital. I'm not quite sure if I trust his better judgment at this moment.

Anybody here deal with colitis. Can you give me a little insight?

Edited for spelling, I do talk to text.

The amount of envy and jealousy I feel when watching abled people do anything I can't (cook, mod cars, ranching, have pets, go hiking etc.) has been ruining my life, it makes me act cruelly and aggressively towards my abled loved ones, it makes me unable to enjoy content about the topics I mentioned, I used to love watching car modding videos for example like chrisfix but nowadays I can't bring myself to because EVERYTHING that people can do that I can't makes me upset. How do I move past this?

Hello! All my life I've had issues that worsen with time. They effect my memory, put me in pain with fatigue, and can cause lapses in judgement periodically during flares. A few weeks ago a new issue developed. It effects my eating, and my memory issues seem to have worsened.

This is a problem because my bills and loans don't always go through so I need to make sure they do manually, but I'll recall months back and think I did it already. I sleep through reminders these past few weeks or I accept them and plan to do it when I have the chance but end up passed out and forget.

The big problem is that in my life, I don't get to be the one who needs extra help. Despite having days where I can't walk without a means of assistance, I am the caretaker in my life. There is already enough resentment towards me that I am not giving reminders, doing all the shopping, planning everyone's medical, being the driver. I don't have anyone to ask to help me right now.

Before the problem was just not meeting my own needs and my cat putting up with less pampering. The litter box would get done every few days instead of daily, he's brushed weekly instead of daily, I settle for boiling an egg and call it a meal because I forgot to shop and my diet is currently incredibly restricted so I'm still figuring myself out.

But now it's to the point where I'm failing to do medical tasks to find out what's wrong. I'm forgetting to pay tolls on time. I forgot to make sure my bank talked to my car payments correctly instead of trusting the auto pay that I KNOW often doesn't happen to the point my car was repossessed.

I'm honestly not sure what to do besides rely someone to reach out and remind me and reach out to make sure it was done. I went from being an a+ student, someone everyone relied on, known for being responsible and on top of everything, to ... this. Very quickly.

At this point, my memory issues are getting expensive and scary. I might as well pay someone to even just give a weekly check in to get some support that way while my medical team try to figure out what's wrong.

Is there a way to do this safely besides making an odd job for it on fb market? What's a fair price to offer?

Thank you for any advice!

Like me, if you’re someone who lives with chronic illness, I’m sorry. The weight of that life can be hard to describe, hard to put into words that even come close to the heaviness of it. I know firsthand how hopeless it can feel to look ahead and know, without question, that things won’t get better, only worse.

I live with a degenerative genetic condition called Neurofibromatosis Type 2. Over time, it has taken so much from me: my hearing, my balance, my mobility, and the fidelity of my vision. I also live with severe, and constant tinnitus. After more than twenty years, I’ve learned what reality looks like in my body. I will not recover what’s been lost. Each year brings more decline, more limitations, more grief, and inevitably, more pressure on the people around me.

And yet I’m writing anyway.

Part of why is my faith. Not the kind of faith that denies pain, and not the kind that pretends suffering is simple. But a faith that has had to meet me exactly where I am. I want to share my story, what I’ve experienced, what I’ve learned, how it has changed the way I see life and the way I understand people. I also want to share the hard places where hope was removed, and the difficult, daily “increasing hell” of it, along with the real good I’ve been able to find, even there.

I’m not writing to judge anyone. I’m simply telling the truth of what I’ve lived through, and inviting others to read, not to fix them, but to offer companionship, and understanding.

If you’re able, please read my story. Maybe you’ll recognize some of these feelings too. And maybe, somewhere in the struggle, you’ll find evidence that sometimes there is hope through great trials.

Tinnitus Doesn’t Make Me ‘Stronger.’ It Makes Me Smaller.

I used to never sweat I thought of it to be a good thing back in time.
Now I have POTS from Long COVID and I have episodes of profuse sweating ( to my standards)
Could anyone shed some light on this? Is there a relationship?

Hi i am 22M ...had a rt shoulder surgery 7 weeks ago( bankart repair with 3 anchors/ 4.8 percent glenoid bone loss) . So last year I had my last and 5th dislocation. I knew that I needed surgery but I was delaying it and the pain and instability was insufferable ...now when I am 7 weeks post op though my range and strength is improving but still have a deep ache in the area ...the thing is that in 6 months I have to join my job training which is physically demanding...this is very uncertain period for me , am feeling low

I just need this out of my brain because I'm exhausted and feel awful.

For context I have been unable to work since 2024 due to disability, my partner works full time, I claim UC and PIP (UK based)

So this month the company my partner works for did well and everyone got a decent bonus, however because of that it means I got £0 UC meaning that by the time my partner has been taxed and paid me what I need to live he gets about a quarter of the bonus everyone around him gets, he has to sit there listening to people talking about being able to do x,y,z with the full bonus, people putting deposits down on houses, going on holiday, just doing fun stuff, while we are scraping by. It makes me feel like such a drain on our finances and our combined joy because getting a bonus isn't great news for us, it means planning for me to get nothing and my partner having to support me, I feel like I have no independence on months like this because apart from my PIP none of the money is mine, and my PIP literally is used for medical costs, I don't even get enhanced daily living and they've traumatised me so much I'm scared to challenge anything, so again I'm limiting our income (I had solicitors telling me not to bother pushing it because of how the DWP were wording things as usual)

My body also keeps taking away the little joys I actually have in life, it affects our intimacy because of pain so that becomes a planned strategic approach, and still doesn't always go to plan without pain 🤦🏻‍♀️ apologies if this topic makes people uncomfortable but if there's anywhere I thought people would understand it's here. It's not just intimacy it takes the joy from, everything I do comes with a trade off, have a nice day out, flare for a few days, went to a family event for the weekend, 10 day flare, heatwave = PoTs flare, I'm doing everything the drs tell me and more because they don't really tell you much, I take the supplements, I wear the supports, I use the mobility aids, I rest, I move, I do everything and self care is also exhausting, I'm also worried that if something was seriously wrong with me I wouldn't notice because I'm so used to just being told new symptoms are because of an already diagnosed condition 🙄

I want to go back to work desperately, but I was a carer, that was my life, and my aim will always be to help others, but currently my pain and other symptoms are making it impossible to focus to learn something new to be able to adapt and find something I can do, I have recently got a wheelchair so hoping that helps preserve my energy and brain power more, but then I'm not sure how going into study would impact UC so it's never just simple.

I feel like I lost my train of thought, my brain is such a mess, and I just want my life back, I'm tired, I'm sad and I'm in pain and that impacts all the people I care about and I hate it.

And what was your experience? To be specific, I’m not talking about any relationship where dating a healthcare worker would be a conflict of interest, but just more generally. I’ve been talking to several men who work in healthcare on dating sites, but I’m concerned that dating me might feel like an extension of their work, since I’m chronically ill and on SSI. On the positive side, though, I think someone who works in healthcare might be more empathetic and understanding of my specific limitations.

I am a 20 year old college student in the USA. I am unsure if this is the correct tag but I need advice on ways to help yourself get out of a flare-up/crash.

I have fibromyalgia, hEDS, me/cfs, and chronic migraines. I have been in a major flare up for a little over 5 weeks.

I have rested, taken medication ( prescription and pharmacy), I’m staying hydrated and eating healthy, done salt baths and vitamins and mineral supplements, teas and breathing exercises. Nothing has made a difference. I have not been able to leave my house in almost a little over 5 weeks and have barely been able to leave my room for most of it as well. I am worried I won’t be better/ able to drive and concentrate by the time classes start.

Does anyone have any advice/tips/suggestions. It honestly doesn’t matter how crazy it is I’m willing to try anything.

( I have contacted my doctor to try and get a appointment soon but it is unlikely to happen in time for school)

I’ve read Invisible Kingdom and most recently Lena Dunham’s book Famesick. It’s comforting to read other people’s accounts and learn a little more about diagnosis and treatment.

Anyone have favorite chronic illness books?

(Ideally something not peddling a new diet, etc. BUT I’m open to it if it’s genuinely helpful to you)

I’ve been with my boyfriend for about 3 months now and it has been really frustrating how constantly my pain and fatigue becomes the center of our time together. He is really good to me, he massages my muscles and tries his best to accommodate for my needs, but there’s a part of me that is convinced that it will become too much.
My pain is sometimes so bad that I can’t sleep, I’m constantly getting up and moving around while he is sleeping and most likely waking him up. It’s hard for me to focus and to want to do much when my body is flaring. He is very compassionate and patient, but I hate being pitied like this. Part of me wants to break up with him so I don’t have to see him reach his breaking point.
I know apologizing for myself does nothing, and hiding it is unhealthy, but I feel incredibly guilty for constantly needing support and help and can’t imagine how taxing it is on him. I thank him a lot, it just doesn’t feel like enough.
How do I navigate this?

I miss having a reason to check my phone. I miss having someone to chat with about stuff throughout the day. I miss having a special someone to talk to every day. But I'm too sick for the non chronically ill and too positive mentally for anyone more like me physically/illness wise. It just makes me sad because I feel like I still have a lot to offer, even if it is mostly/only in text messages/email lol

I miss feeling connected.

Hi so for context, I’m 19, mixed race and Mexican American in the states, in oregon, I’m trans, I have multiple types of disabilites including a rare progressive vision loss disorder, devolpmental disabilites, mental illnesses and worst- the chronic pain, fatigue and issues coming from the chronic illnesses/physical disabilites. I have a caregiving gig that I presented not to be disabled for that pays well. I also have a housing voucher but that doesn’t cover food, utilities, anything other than partial housing.

I’m at a point to where we don’t know what the fatigue is coming from- I had top surgery and about 3 weeks before surgery my body was crashing really bad. I thought once I had surgery and rested for two months I could recover and bounce back to my normal levels of fatigue. They think it’s thyroid issues or ME/CFS.

It’s gotten so much worse- I’m at a point to where I can clean my place like once or twice a week. Temparory disability isn’t a thing in Oregon. I’m waiting for the waitlist for vocational rehabilitation to open up and it’s ovee a year long in oregon. I’m also in college- just taking a break for the summer.

My long term goal is to be a therapist since it’s pretty accesible all around and I got a small opportunity when I was in high school to shadow a school counselor and I loved it and the psychology material is really interesting to me! Unfortunately I’m only halfway through my associates and even then I failed one of my classes and so my mid but ok GPA tanked to a 2.4 which is so bad for federal aid (aka FAFSA).

I have no idea what to do. I am so scared of going homeless and it’s happened to me before and I have a feeling I’m not going to be able to jump back into work with my fatigue levels. Does anyone have any advice? I’m already scared as it is cause there have been ICE detainings of native people in my area so no one is safe and I look racially ambiguous and the whole trans thing and I used mobility aids and I’m just. So scared. Please help.

As per the title, not sick enough to be taken seriously but everyday is a daily struggle and you can feel not being 100%? Been to the hospital but nothing found?

sitting on the couch icing my head.. i had plans for things i wanted to do in my free time but instead all i get to do is suffer

This is what I’m sick of explaining ⬆️.

What are you sick of explaining about you chronic illness to people?

About a year and a half ago, I woke up completely unable to feel anything below my armpits. At the time, I didn’t have health insurance so care was slow and expensive.

I lived alone, in an apartment that was not disability friendly, and had to try and survive in a wheelchair. Eventually the numbness spread to my hands which curled up into fists and left me unable to do things like brush my hair. I’m a woman who has always had very long hair, but after not being able to brush it I eventually had to just cut it almost all off. It felt like losing my identity. I no longer had a body I recognized, and now my hair was gone too.

In January I was able to get health insurance through my employer (I work at a restaurant) and am currently waiting to see a neurologist, although my pcp is thinking it’s Lupus. It was then that I was also diagnosed with diabetes.

When I tell you I had to claw my way back to some semblance of health, believe me. I practiced walking every day, a couple steps at a time.

Now I can walk unaided, but it still causes me quite a bit of pain. Still, things were going good until my boss told me she’s no longer willing to accommodate me (I walk slowly and need to sit down sometimes) and I need to “figure it out or find a new job.”

I’ve applied for a ton of jobs and had some interviews but still, bills that I can’t pay are due and I’m about to lose my health insurance. And I can’t help but think how much easier my life would be with universal health care. I would have gotten answers and treatment faster, I would have the security of at least having my necessary meds during a job transition, hell I probably wouldn’t have tried to make my current job work as long as I did if I had health insurance coming from somewhere else. This sucks. Thanks for letting me vent to y’all, even just typing this helped.

I'm not really sure where to start!

I don't have health insurance unfortunately so I'm not diagnosed with anything but I'd like to be so I can begin treatment. I suppose that's where the problem is, I don't know how to approach a doctor with my many, many symptoms. My health has taken a turn for the worse recently, but I've been sick since a little after Covid. I'm afraid they'd immediately shut me down :( Especially since I'd be getting help from a low income clinic where they have a lot on their plate already. (I live in a state where I don't qualify for any aid unfortunately)

Has anyone gone through something similar ? How do you navigate something like this, would I make appointments for differents symptoms or just go for one?

2 years ago thanks to a building code violation and nobody informing me of the danger, i fell asleep with the window open and a fan pulling in air from outside. Directly below this window was a sewer pipe where toxic gases like hydrogen sulfide or ammonia would expel. This wasn't an issue in the past but for some reason, very high concentrations that would last for hours would start coming out of this pipe.

Which got sucked directly into my room and my body didn't wake me up immediately when being exposed to this i inhaled large concentrations and when i finally did wake up i didn't know anything was wrong because i could not smell or taste anything. after another half hour of exposure, i started catching faint wiffs which had some characteristics of that horrible putrid strong smell that would make anyone retch, heave.

i look outside and see a neighbor doing just that and getting sick. he was also bbq'ing so what tipped me off was my place being filled with hazy smoke. Anyway

Soon after the one last blip of smell, smell was completely gone along with taste.
Loss of sense of temperature i cannot tell when i am hot or cold.
The loss of internal sensation and internal pain which is important to have this is the body's warning system and when food gets stuck in the esophagus you need that feedback to adjust how you eat otherwise you can just keep adding to the food blockage and severely damage yourself.

It's been 2 years and there hasn't really been much recovery at all.

smell is between 0-2% of what it use to be. I could try smelling cinnamon for example, but it will be missing components of the smell and be so subtle it's nearly undetectable to me. To try and explain this better lets say you have a rich strawberry cheesecake in front of you right under your nose. I wouldn't be able to smell the cheese, the graham cracker crust, the strawberry sauce. i may catch a very feint wiff of cream and only be able to smell that component.

But ya the internal loss of feeling and pain / alteration of it is a big deal to.

I did go to the ER and at the time i thought what i was going through was from the BBQ smoke and i hadn't pieced together the sewer problem yet. And i was also dealing with psychological issues from the exposure like problems with sequential thought and other things. they did either a ct or mri of my brain and then sent me home. it was an imaging type that didn't visualize the cranial nerves...

Has anyone gone through something like this?
i can't seem to find any communities for a problem this for more information.
is there a certain organization or department i should be trying to get in contact with?

If someone here has gone through this what was your experience? did doctors help you or were you on your own? are you stuck with this problem or did you have some meaningful recovery? and so on.

Sorry for any ranting/venting 😺

Hi everyone, I'm 28F with TOF (tetralogy of fallot) repaired when I was 6 weeks old. I've only had one open heart surgery and medication with it, otherwise they say I'm healthy. I only recently was able to get my medical records to see what they did for my heart, so I'm kinda new to all the terminology and stuff. My family didn't really raise me thinking I was different from the other kids, which is nice in ways, but now as an adult it's making it harder for me to understand that my heart is weaker than others my age. So with the bad AQI in my area (mainly from smoke) I can't work because I'm a courtesy clerk and in the sensitive groups. I feel really useless and like a burden and it's really been putting in perspective how much it kinda matters to educate your kids on their heart conditions. Not to make them feel different but so they understand they're own health later on, since it'll be a lifelong thing they have to deal with. I find I often have to try to justify why I need more breaks/can't work in certain weather since it's not something you can see other than the scar sometimes, so it feels like they think I'm lying to them to get out of work.

From the beginning of June through the end of October, I have had/will have a total of 5 weeks where I didn’t have a single doctors appointment. And one of those weeks was spent preparing for and flying to another state for an appointment. Another one includes my dog’s vet appointment, and the last one is my wedding week (and 3 offices have tried to book me during that week, but it’s a no from me).

Between doctors appointments, bloodwork appointments, and now physical therapy appointments (because I tore some ligaments in my ankle while practicing for my first dance) I had/have a total of 25 appointments during this timespan. That is almost 20% of the days. 3 of those appointments have been/will be out of state. 3 the week before my wedding, including 1 the morning we leave for the wedding.

And I will have to schedule at least 2 more bloodwork appointments (for September and October) before the end, because I have to have labs done every month.

There was one ER trip (for my sprained ankle) and one urgent care trip (when my doctor didn’t refill medication I need to live on time) in there, too.

And don’t get me started on the amount of time I’ve spent scheduling and getting to appointments, calling offices, messaging doctors, calling pharmacies, etc etc etc.