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Posts by Angela Wright

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How to deal with swelling? in Health ·
urbanviper3 said:Hey there.
I’ve got a MASSIVE problem on my hands: facial swelling. It’s pretty bad right now, though I've been throwing ice and cold compresses at it all morning, so it's slowly starting to recede. The catch is, New Year's Day is tomorrow, and I can't show up looking like this.

Does anyone know of a more effective way to deal with swelling?
Boric Acid?
I did a little digging on Google and actually stumbled upon some weird advice involving onions... Does anyone here actually know what they're talking about regarding this?

Thanks in advance.

p.s. Sorry if I posted this in the wrong section.

What kind of swelling are we even talking about here? Was it a hit, a sting, an acne breakout?
slywalker4 said:Hey to everyone staying active on this thread...

If I’d known this community existed even two years ago, my life would have been so much easier.
Basically, about nineteen months ago, my mom lost her fight against a Grade 3 oligodendroglioma brain tumor after battling it for eleven months. It all happened with terrifying speed—one day she was perfectly healthy, and the next, she was terminally ill. She actually went into her first brain surgery with a smile on her face, only to wake up the next day paralyzed and struggling to speak because of a medical error at the hospital.
I had to stay strong through all of it, refusing to break, trying to remain positive and optimistic... mostly for her sake, and then for my dad's... even though I was falling apart inside.

Kudos to you all; we need spaces like this where you can just vent everything weighing on your heart and find a little comfort...even if it won't change the outcome for your sick family member, it really helps those of us left standing behind them.

We absolutely can help ensure that those who aren't going to recover can pass away with dignity, surrounded by nothing but love and family care. We can make things as easy as possible for people in that position.
I am so incredibly sorry for your loss. If you feel up to writing, please share your experiences with us from time to time. The whole point of this is to pass on what we've learned so we can lighten the load for everyone else.
brightangler18 said:Thanks for the link. Does anyone here actually have firsthand experience dealing with this illness?

You could check out the forum over at the "For a New Day" Association website; a few people have posted there, though traffic is pretty thin. Honestly, just post an inquiry yourself—you might actually find someone willing to share their direct experience if you ask.
brightangler18 said:Please, just answer the question! 😢

Right here you’ll find an incredibly detailed breakdown covering the diagnosis, treatment options, and prognosis.
No one can look you in the eye and guarantee exactly how this disease will play out or what the final outcome will be. Dealing with cancer is a lifelong battle. Even when someone hits remission, there is always that lingering shadow—the possibility that it might come back.
What you actually *can* do is show up for her as the same person she’s always been. Don't drown her in fear, pity, or panic; that's the last thing she needs. Remember, she hasn't changed into a different human being; she's just a person currently facing some massive hurdles. Just be her rock.
Sophia Ross53 said:Thanks. I don't think I fully grasp the gravity of it all yet, though I know she wouldn't want to see me suffering like this. Life can be such a bleak, unforgiving place sometimes. It always seems like the decent people are the ones who get hit the hardest.

Trust me, you don't get to pick how life unfolds. There isn't some grand scoreboard where everything is categorized as strictly "good" or "bad." We’re all just small, fragile beings navigating this chaos, but the difference is that the good people actually realize how precarious everything is. It’s much harder for the rest of us to wrap our heads around it when we lose someone truly kind—that's exactly why it hits us so hard.
It was a huge comfort to me when my mom passed knowing she lived a life that was short but incredibly meaningful. She was deeply loved, and she knew it too—she wasn't alone. Even though her illness dragged on, she didn't suffer the way someone else with her diagnosis might have, and being able to pass away in her own home, held in our arms... honestly, for anyone facing death, that’s a massive blessing. I'm just profoundly grateful for that.
Look, honey, given how much she suffered, you really ought to be grateful her agony didn't drag on forever. At least she lived life to the absolute fullest right up until her final breath. Take that as a lesson for yourself—try actually living every single day you're given.
Hang in there and just know that you’re going to be okay—even if you feel like a completely different person right now.
Living with Tourette's syndrome in Health ·
hiddensailor14 said:Can you please walk me through how you distinguish between a "disorder" and an actual disease in a practical sense? I’m asking because I practically got lynched by the folks over at NORD just for referring to Down syndrome as a disease—apparently, that's a huge no-no and technically isn't considered one.🤔😕 I assume the explanation will be just as similar when it comes to Down syndrome.
Are all illnesses considered disorders, or just some of them? And conversely, are all disorders actually illnesses, or is that only true for certain cases? Or am I overthinking it—do "illness" and "disorder" even have anything to do with one another?😕
It would actually be pretty helpful if you could lay out a few of those specific disorders and illnesses; it would give me a much clearer picture of what we’re actually dealing with here.
Thanks.🙂

Genetic conditions aren't exactly "illnesses" in the traditional sense; they’re more like fundamental coding errors. Take Down syndrome, for example—it’s just what happens when an extra chromosome gets bundled into the mix during cell division. You're looking at a structural defect that occurs right at the developmental level. It isn't something you can go in and "fix" later because the blueprint itself is different. It’s not a disease; it's simply how the biological foundation was laid down.
Take PTSD, for example. It’s a disorder triggered by extreme stress, something that can be managed through targeted psychotherapy to eventually bring a person back to a balanced state of mind. But here’s the kicker: with these kinds of conditions, there is no clear explanation as to why one person walks away from a traumatic event unscathed while another develops a debilitating disorder from the exact same situation.
It’s a straight line from one disorder to another. Take PTSD, for example—you see this pattern where people dealing with that kind of trauma end up facing cancer diagnoses down the road. It isn't some random coincidence; it’s likely because they’re still carrying that intense, crushing stress inside them, reliving the psychological trauma long after the actual event has passed. Stress doesn't just disappear; it stays in the system and wreaks havoc.
Kids living with Prater Will syndrome face some pretty brutal uphill battles—take their lack of appetite control, for instance. Because they don't really feel that "I'm full" signal from their bodies, they end up overeating uncontrollably, which acts like a fast track toward serious health crises like diabetes or cardiovascular disease.
Most illnesses are things you can actually tackle head-on—you throw medication at them, tweak your lifestyle, and aim for a cure or at least some real management. But when you’re dealing with disorders or syndromes, the playbook changes entirely. You aren't really "treating" the condition so much as you're trying to rehabilitate the person to function within the reality of their situation. It's less about fixing the problem and more about adaptation, especially since most of these conditions are irreversible.
It’s also worth noting that various illnesses can leave behind permanent damage, even after the initial condition is fully cured. Think about how polio used to be—people could beat the virus itself, yet they were often left with lifelong physical impairments, like struggling with mobility or dealing with legs that just never regained full function.
I don't know how much more clearly I can put this, but these are the nuances we have to be aware of. We’re talking about real people whose lives depend on these distinctions, yet politicians are all too happy to manipulate those very details just to serve their own agendas.
Living with Tourette's syndrome in Health ·
Casey Wood39 said:Whether you call it a disorder or a disease—honestly, the terminology doesn't matter much when doctors themselves struggle to pin down an accurate diagnosis. I know from firsthand experience that people dealing with this face massive hurdles. Everything I know about Tourette's comes from real-world practice, not some textbook. I’d really appreciate it if you could advise me on the exact steps needed to start an association and who specifically I should contact. I know you need at least three members, but does it have to be exclusively people living with the condition?

There is actually a significant distinction between a "disorder" and a "disease," and that’s a nuance that should always be highlighted. It’s the people directly impacted by the diagnosis who need to lead the charge in educating the public and, quite often, the medical community itself.
In the States, the National Organization for Rare Disorders can also help advocate for rights and lobby on behalf of people living with Tourette's.
To start a non-profit organization, you need at least three people; it doesn't matter whether they have a formal diagnosis or not, as long as they share the same vision and goals.
You can find everything regarding the formation of a non-profit here:
On our organization's website, you can find our bylaws and use them as a template to draft your own. That’s exactly how we handled it.
Once you have your own organization established, you can join the National Organization for Rare Disorders, which serves as an umbrella federation for all groups representing the rights of those with rare diseases or disorders. For instance, my cancer advocacy group is part of that federation specifically because we represent patients with rare tumors. Working through a national federation makes it much easier to fight for rights and dismantle discriminatory policies, because those issues often affect everyone with a rare diagnosis. Frequently, once a single precedent is set and one group secures a specific right, other organizations can more easily achieve similar results. A federation creates a critical mass that politicians and bureaucrats simply cannot afford to ignore.

I definitely encourage you two to connect, get to know each other, and launch this together. The "Good Morning America" group was actually born out of similar connections and shared goals found on forums just like this one.
Good luck, and stay brave in fighting for your rights! You can do this!
Sophia Ross53 said:My mom passed away this morning at six. She didn't even get to see Christmas. Just a few days ago, we were walking through the city together, picking out gifts. She was so full of life that day, and then everything just took a sudden, sharp turn for the worse. We rushed her to the Mayo Clinic at three in the morning on Tuesday, and she fell into a coma she never woke up from. That last smile this morning was it; after that, she was gone. I find some comfort in knowing she didn't suffer much. I won't even get into how inhumane the doctors were when we brought her in, but honestly, that's just typical for a hospital in a big city like that. Right now, I just feel numb. Everything is a blur. The funeral is tomorrow.

Honey, please accept my deepest, most sincere condolences.
Just do what you can; we’re all so small and our time here is so fleeting. I hope you find some peace in your heart, even through this Christmas season. Let her rest now, and carry her memory with you with pride. You did everything you could for her. She spent her final days surrounded by hope and love, and that is a massive blessing, both for her and for all of you.
Hang in there, dear.
Anyway, I sent over an official inquiry to the Hospice Friends Association, and they promised to get back to me once they wrap up their general assembly happening this week. It sounds like they’re gearing up for some organizational shifts, so they'll reach out with the full scoop once everything settles down.
Doctors are such a perfect microcosm of this entire country—everyone is constantly at each other's throats. There’s way too much ego and petty jealousy floating around, and don't even get me started on the political maneuvering and the power trips within the medical field. I’ve lost count of how many times I’ve felt the sting personally just by mentioning one doctor in the same breath as another when discussing collaborative projects. It honestly feels like high school drama, where everyone is nursing some inexplicable grudge against one another for absolutely no reason.
What a total joke!
Maybe it’s finally time for everything to boil over and force their hand. When people are pushed into a corner, they crack, and that creates a chain reaction that could end in anything. Honestly, a complete meltdown might actually be better than staying stuck in this stagnant, pathetic mess we're currently drowning in.
ironsailor22 said:Angela Wright, you don't need to thank me, and honestly, double-checking facts is always a good move.
I've officially stopped trying to help through channels like this because I just don't see the point. What's the utility in waiting for some doctor to swing by for a home visit when you're dealing with painful bone metastases and can barely walk? It’s all right there in three kilos of medical records—you need a wheelchair right now, not in a month or two. Even if my bank account is empty, I'll find a way to make it work without relying on volunteers.

Look, Goldie, I totally get where you're coming from, but I think you're aiming your anger at the wrong target. This mess we're stuck in isn't actually a failure of volunteer work; it's a fundamental failure of the healthcare system. People turn to these types of initiatives and local Associations just to scrape by, but the government should have had these services streamlined and running like clockwork ages ago. By nature, we Americans tend to be pretty stubborn and principled, but unfortunately, watching my mom go through her illness taught me that sometimes you have to swallow your pride and bite the bullet just to help her—even if the person you're supposed to be getting help from is someone you'd rather hit with a nail-studded club.
That's just how it played out for me. Life is a rigged game.
ironsailor22 said:Come on, people, I'm not making this up.
It was laid out for me perfectly clearly: first, you have to register with the Association, then a doctor will come by for a home visit—whenever they can make it, of course, since she's a volunteer and they’re juggling somewhere between 130 and 160 patients (I didn't catch the exact count)—and only after all that can the request be approved. We're talking about a wheelchair for a woman dealing with bone metastases; right now she can still sit, but she likely won't be able to for much longer, at which point the chair won't even matter anymore.
Let me say this again: everyone is quick to offer "generous" help, but the second you actually ask for something concrete, they brush you off with a bunch of excuses and red tape. Honestly, I am sick to death of these empty promises.

Look, ironsailor22, nobody is suggesting you're spinning tales. But as an Association that publishes this data on our official site, we are obligated to verify everything ourselves rather than just printing hearsay.
We are just as fed up with the empty talk as you are, which is exactly why we’re going to follow through. Our primary goal is to ensure the information on our pages is vetted and reliable. So, thanks again for bringing this to our attention!
brisksurfer said:hmmm... I used to go to them to pick up oxygen and nebulizers for my dad. They were incredibly kind, and we never ran into any issues whatsoever... I’d just give them a call, set up a time to swing by (either the same day or the next), and everything would be ready and waiting for me. No need for referrals, doctor's notes, or anything else.
The only thing they did was copy over the medical history for their own records.

And honestly, the ladies there were more than just polite... I'm really grateful to them for that. 😍

It’s obvious that their operating procedures have shifted. Up until now, they’ve requested medical histories, which is perfectly reasonable, but they never forced anyone to join an association or sign up for home visits. That feels completely wrong to me. It’s like if we suddenly shut down this forum and stopped sharing information with everyone except our paying members, essentially lobbying only for our own group instead of all cancer patients.
We'll see where they actually stand, though. I’m going to reach out to them on Monday and ask for a brief summary so people can get the facts straight.
ironsailor22 said:Since things in this country almost never work out the way they're advertised, here’s some verified intel just in case anyone needs it.
On another forum, we spotted a post from a John Doe claiming that an American Association for hospice friends provides all the necessary oncology care supplies for free; apparently, you just call them up and show up with your medical history and ID.
I actually went ahead and checked, and turns out that's total nonsense—it isn't nearly that simple.
First off, the patient has to be officially admitted to a hospice program, then you have to coordinate a home visit with a doctor, and only after that evaluation can the doctor decide if the requested equipment is actually necessary. And keep in mind, that specific rule applies to patients in terminal stages within the Washington, D.C. area.

Well, thanks a ton for the heads-up. We'll give our colleagues there a call to see what's actually going on, because since those posts were originally written by their own volunteers, it's pretty obvious something has changed.
shadowsurfer54 said:I’m right there with you!
Is anyone actually willing to volunteer their time to drive some kind of actual reform?

Activists carry much more weight than simple volunteers. Volunteers just carve out free time to knock out specific tasks handed down by activists. Real activists need to be embedded within the community—among the patients, their friends, and their families. They should be the ones directly or indirectly feeling the sting of the problem, though that isn't always how it works in practice.
My association will definitely step up, providing both boots-on-the-ground volunteers and public support, especially since we have people in our own ranks who developed diabetes as a result of a cancer diagnosis or its treatment. This kind of waiting game for appointments is unfortunately standard procedure for oncology patients too, where time is even more precious—every single day wasted is ten steps forward for the disease.
Rachel Ruiz94 said:I really want to know how your loved ones reacted during that period of uncertainty while waiting for a diagnosis. Did they actually open up and share their fears and anxieties with you? I’ve been waiting over three weeks for my biopsy results, and honestly, I’m convinced it’s melanoma that has already metastasized and progressed. My reasoning? It started growing vertically, it developed nodules, more colors, and became asymmetrical—all of that was happening six months ago. When I was pregnant, I saw a dermatologist who told me not to have it removed before giving birth, that I didn't need follow-ups or even to monitor it. I did what anyone would do and just trusted the doctor. But after the baby came, it changed drastically: it turned soft like a grape, faded, started stinging intensely, and developed white patches. Then came the pains in my groin that spread through both legs down to my knees and hips. Less than a month after giving birth, I finally went to get it removed, but even a month after that, I still don't have the pathology report.

I know what an advanced melanoma looks like. I know that surgery is the primary way to handle it, and in a case like this (if that's indeed what it is), chemo isn't going to be the magic bullet. How am I supposed to face my family while spiraling through these thoughts without a confirmed diagnosis? I had one breakdown in front of my husband, and today I finally laid out all my worst doubts and fears...

It's a shame there isn't a dedicated thread for those who are actually sick.😢

I know about your Association and thought about posting there too, but it doesn't seem like much gets written there... should I just copy and paste my post over there?

I totally get why you're scared, but when life hits this hard, you can't just jump to conclusions and assume the worst without any proof. Even doctors won't do that.
Hormonal shifts likely caused the mole to change, and those pains you're feeling could easily be the aftermath of childbirth and your pelvic bones settling back into place.
Don't sit around waiting for them to call you with the final pathology report; pick up the phone and badger them! If things are as bad as you fear, waiting a whole month for a lab result is an absolute joke.
Post on the other forum too. People read it, and I'm sure someone will reach out. The forum probably isn't as active because there aren't as many melanoma patients compared to people dealing with lung, colon, or breast cancer.
And please, stop mentally treating yourself as if you're already sick. You simply don't know that yet.
shadowsurfer54 said:Exactly. You've got a point there.

By the way, this isn't just someone shouting into the void on a message board; this is a public service announcement, and those two things are worlds apart.

Of course steps are being taken, but if the general public doesn't grasp the gravity of the situation, they aren't going to lift a finger.

Unfortunately, for all of us, diabetes is essentially a pandemic.

Think about every major disease that wiped out humanity in the past—the plague, cholera, typhoid—they all followed the same pattern: an initial phase, a massive escalation, and then they eventually subsided.
Diabetes, however, has been on a relentless upward trajectory for the last twenty years.
There is a very high probability that within the next decade, the number of people struggling with diabetes will jump from the current 10% of the US population to somewhere between 25-30%. That is a staggering amount of people.
You can find a few documentaries here that dive into this, so give them a watch.

The number of diabetics in America is massive, and they have a very active association, but this isn't some overnight crisis. The issue with the general public is that they tend to ignore anything that doesn't hit them directly in the face. Based on my own experience working with a cancer support group, people are incredibly passive—even those who are directly impacted by the crisis. That’s what gets under my skin the most: people taking the path of least resistance, convinced that nothing can be done, even though nobody has actually bothered to try.
Diabetes is a condition that can be managed exceptionally well today through the right lifestyle adjustments and consistent, balanced therapy. Because we know this disease is expanding, we need to cut through red tape—like these endless waiting lists for checkups—right at the starting line.
I noticed this thread was started by someone from the American Diabetes Association, and I sincerely hope that informing the public doesn't stop with this one post. I’d suggest launching an initiative through the coalition of associations in healthcare to draft a single press release to be sent to every relevant news outlet. We need a lot more assertiveness in how we present these issues.
shadowsurfer54 said:Doesn't most of what happens in America just hinge on how we treat our most vulnerable?

Exactly. The only difference is that being "vulnerable" in this country is often a choice people make.
It’s exactly the situation we allowed to happen.

The mess likely started when they began consolidating hospitals and, in the process, slashing budgets left and right.

Shouting into the void doesn't work; you can't fix this on a message board. You need organized civil society. When it comes to actual rallies or town halls hosted by advocacy groups tackling these issues, you can usually count the participants on one hand.
mellowpilot93 said:small towns

I can't speak for the local vibe there, but if you don't have some kind of inside track in Washington, D.C., landing that transfer is going to be an uphill battle. Everyone's facing budget cuts right now, so the folks in D.C. are doing everything they can to reject anyone who could just get treated locally instead.
Give Rib a shot regardless—though Vineyard is also a solid option.
Carl Morales48 said:Glioblastoma multiforme—those two words alone are enough to make anyone's stomach turn. Looking through these threads, I’m seeing quite a few cases popping up. People, please, share what you know; we need to learn from each other's experiences. Over the last month, my mother has been taking something called Todoxin from Belgrade—or so Angela Wright tells me. It’s technically a dietary supplement, but it operates under a slightly different philosophy. While it hasn't stopped the tumor from growing, it has visibly helped her feel better lately. Angela, have you come across any new info? Let's hear it, everyone...

Hey,
I mostly update you on glioblastoma based on what I pick up from the association forums, since that's where you get the most movement from people facing the same diagnosis.
The latest news I've gathered involves that clinical trial in the USA involving stem cells on the first patient. I posted a link to a video on the forum.