Posts by feralridge3

Edward Sanchez72 said:nobody actually needs a psychiatrist... I have friends who work professionally in this exact field... they act as nutrition consultants. They've helped me through quite a few things... even issues similar to this one... so if you want some expert assistance, I can give you their info via DM.

Look, you can hire ten different nutritionists if you want, but that isn't going to do much if you're binge-eating because of underlying psychological issues. 😉
There was an episode of the Oprah Winfrey Show earlier this year specifically focused on the theme "What Are You Hungry For?"
People who overeat are using food as a coping mechanism for something deeper. In my view, they might be aware of the issue, but they simply lack the strength to confront it head-on, so they turn to food for comfort instead.
Seeking help from a psychologist or a specialist at the Mayo Clinic is nothing to be ashamed of.

lonedriver123 said:I totally forgot to mention that you'll need to attach the receipt from the exam itself.😉

Regarding the MRI, I highly recommend the Neuron clinic over in the Šalat district. You can get seen pretty quickly there, and their rates aren't any higher than the other places. Plus, they actually have a 3T machine—it's the only one of its kind in the whole country. Most other facilities are stuck using 1.5T machines.

With a referral, it takes about five months, and once you pay, you're in within two days. 🙄
I went through this process myself about six months ago.

Kimberly Wright said:@feralridge3/">@@feralridge3
you have the email 🙂

Yeah, yeah, you have it too. 😉
Now that I've actually gone back and reread my notes, I realized I was looking at the MRI results
which doesn't really change the situation regarding the request I sent over to your email.

Kimberly Wright said:I read somewhere that some people have actually been trying to get refunds from Medicare...
If anyone happens to have any insight regarding this option, please reach out. I really need to pinch every single penny right now; this therapy is going to be a long haul, and heaven knows how many other unexpected expenses are going to pop up along the way.

I actually requested a refund, and they went ahead and gave me my money back. 🙂
There was a strong suspicion that the cancer had returned, so there was absolutely no way I could sit around for six months just waiting for my turn through the Medicare referral system. 😲 I've officially thrown in the towel. I'm done. $1100 I finally managed to get my appointment scheduled, though it took two whole days of waiting around just to get in line.
Sure, you can wait nearly six months if that's what it takes, as long as the money actually hits your account in the end.
I initially headed over to Medicare to meet with their legal counsel. She advised me that I shouldn't bother with any of those standard pre-printed forms; instead, she told me to just draft a formal request on plain white paper. The plan is to attach copies of all my medical records to that letter and then hand everything back to her directly.

I actually have the request saved in my archives, so if you want to take a look at how I drafted it, just shoot me a PM with your email address.

The moderators could probably rename this thread to something like "How to Raise Funds for Expensive Medical Treatment or Medications."
I truly believe a dedicated thread like that would be beneficial.

In this current economic climate, raising funds isn't easy, especially when you aren't dealing with a child—though, naturally, everyone feels more sensitive when children are involved.

I can offer you a few pieces of advice.
Draft a single, comprehensive document that includes the full name of the individual needing the medication, their home address (so people can verify they are a real person), the specific diagnosis, a summary of previous treatments, the name of the prescribed drug, and an explanation of why insurance companies like Blue Cross Blue Shield won't cover the costs.
Finally, make sure to include a bank account number—preferably a checking account, since savings accounts can sometimes be subject to different tax implications. You should also attach copies of the medical documentation; there will undoubtedly be someone who wants to see proof before they commit any money.
Once that's ready, post it on Facebook, use the help threads here on the forum, or even start a blog to keep people updated on the fundraising progress and the treatment itself.
If the mother is currently employed, she should check if her employer offers any kind of assistance or hardship programs.
There are also non-profits like the American Cancer Society that assist patients fighting malignant diseases and their families (I suspect some women might reach out here as well).
That document you prepare can be sent out digitally or even hand-delivered to local businesses in your town. Get some friends or family members to help spread the word.
Don't expect the money to just roll in; you’re going to have to scratch and claw for every cent. 😢

Good luck!
If anything else comes to mind, I will write it down.

I see the moderators have merged everything into this thread, but I still maintain that it ought to be its own separate topic with a more appropriate title.

Olivia Gomez67 said:It was the exact same story for me, except I ended up retiring... and honestly, I would love nothing more than to get back to work, but unfortunately, my health won't allow it, even though I'm still quite young. It's a shame... now I'm just trying to adjust to this new reality.

I am truly sorry to hear that. 😢
I certainly hope I don't end up following in your footsteps. 😢
I suspect you might be dealing with some issues regarding your spine.

Noah Thompson said:Also, one more thing—were both of your claims approved?

In my case, my primary care physician referred me to IBM after I had been on medical leave for six months, simply because the law required it. To be clear, I didn't go in there asking to be transitioned to disability retirement.
Oh, and yes, my claims were approved. 😉 They haven't declared me unfit for work; I am still currently on medical leave undergoing treatment, and I am hopeful that I will eventually be able to return to my position. 🙂

Olivia Gomez67 said:There’s only ever one doctor on that board. They aren't there to perform a physical exam on you; they just want to walk through the history of the illness—how it started, how things have progressed since then. Basically, their whole focus is on the lab results and the medical records you provide. No one is actually going to examine you personally during the session... You should receive the official decision at your home address within about three weeks of the evaluation. I know this because I’ve been through it myself.

That is spot on. 😉
I went through my evaluation back in June. There was just one female doctor present, and she was incredibly kind. She reviewed all my medical documentation, asked me two or three quick questions, and then I had a couple of questions for her as well 😁 and we wrapped everything up on good terms. 😁
The decision arrives at your house very quickly. In my case, it showed up in just two weeks.

Sam Hayes said:I wasn't entirely sure which subforum would be the best spot for this—and I really didn't want to clutter things up by starting an entirely new thread—but I’ve been giving some serious thought to organ donation after I pass. I was wondering, does anyone know how one actually goes about getting that official donor card? I suppose I should probably reach out to someone to register, or maybe there's a specific way to sign up online?

I suspect this might be slightly off-topic for this particular discussion. 🤷

Generally speaking, under American law, if you haven't explicitly opted out, you are considered a donor by default.

We’re getting a bit off-topic here.

I just wanted to add that finding actual information is such an uphill battle. It feels like my doctor barely scratches the surface, giving me nothing but the bare essentials. Meanwhile, everyone in my circle is just telling me, "Oh, you should ask more questions." But how am I supposed to know what to ask if I don't even have the baseline info to begin with? 😁

That being said, despite all the frustrations, I still think our healthcare system isn't a total disaster. Honestly, if I had to pay out of pocket for everything, I would have gone bankrupt a long time ago. 😢

jadesailor14 said:vineyard
well, I actually put this together myself
this is just a perfect little snapshot of how our healthcare system operates
unfortunately, there are people out there who simply cannot navigate all this bureaucratic nonsense—nonsense that nobody bothers to explain to them—and they end up stuck without the cash to pay for their prescriptions upfront while waiting for a reimbursement check that might never come.

It’s rare to find anyone willing to walk you through the labyrinth of health insurance, which is why forums like this exist. 😁
Still, you learn the most from your own mistakes. 😍
Very few medical professionals are actually going to sit you down and list everything you're entitled to.
That’s why you have to dig, snoop, and do your own homework. 😉

jadesailor14 said:And yeah, I’ve been sitting on an MRI appointment scheduled for April 30th, 2010, for a whole month now. 😁
Thank God I have MS; if I had a brain tumor instead, I could have kicked the bucket six times over by April 30th.

So, where did you book if the wait time is that long?
At Medikol, you're looking at a two to three-month wait.
Earlier this year, I actually ended up paying out of pocket for my MRI, but then Medicare reimbursed me because the scan proved the neurosurgeon was right all along.

Anyway, back to the medication issue.
I pay for my own meds because they aren't covered under Medicare.
From what I’ve gathered, if a specialist prescribes a drug that isn't on the Medicare coverage list, the hospital is supposed to shoulder the cost. The catch is that you'll rarely find a specialist willing to prescribe anything off-list, especially when the price tag is astronomical.

Once upon a time, right in the middle of the day, I was suddenly struck by this intense vertigo. It is a truly terrifying sensation—that disorienting feeling where you're convinced the cabinets are actually flying around the room. The spinning was accompanied by severe nausea. I eventually managed to find a specific position that lessened the sensation enough for me to drift off to sleep. Once I woke up, everything seemed to have returned to normal.
Over the course of five years, I dealt with four separate episodes like this, though the most recent one lasted for two full days.

I sought out medical specialists, and they informed me that the issue lies within the vestibular system located in the inner ear. They asked if I suffered from motion sickness while riding in a car. I told them yes, particularly when the driver is heavy on the gas while navigating winding roads. They confirmed that this is directly linked to the balance center.
I recall the specialist mentioning that many people suffer immensely from this; some experience dizziness for days on end, accompanied by constant vomiting and nausea. He noted that while there are medications available, they are typically reserved only for the most extreme cases.

Since that time, I have been fortunate enough to avoid that particular brand of misery; I haven't had another bout of nausea or vertigo in years.
However, I still struggle with motion sickness in vehicles, especially if the driver is aggressive with the accelerator or slams on the brakes unexpectedly...

Nancy Hernandez43 said:Just try to believe that everything will eventually fall back into place. Honestly, with that level of humor, it's clear you're a strong person—you'll find a way through this even if your hair doesn't grow back thicker! 👍

Hair loss is the least of my worries. 😉
Right now I'm actually reading that book, Against Cancer, the one the girls from the Association are always recommending.

quietraven0 said:feralridge3, I honestly really appreciate you being so candid with us.
I can’t even begin to wrap my head around what that experience is actually like. I assume the recovery window after radiation might be a bit longer than it is following chemo before things start growing back, but eventually, it happens. It seems to me that losing your hair hasn't managed to dampen your spirit at all, and honestly, that's what matters most.👍
How have you been holding up lately? Is everything staying under control?

The oncologist mentioned that it takes about a year after radiation for hair to grow back, though there is a chance it might not return if the follicles were damaged. 😢
It’s been a year since I finished my radiation treatments, and my hair situation is exactly as I described earlier.
To be perfectly honest, I’m not holding my breath expecting it to fully recover. For now, it doesn't bother me, and I’m not even thinking about buying a wig yet. I’ll probably reconsider once I reach the stage where I'm heading back to work—though maybe I won't even need one then. With this look, I could probably scare off any animal in the woods.😁 😂

I’ve completed four cycles so far; I have two more to go, and I should be finishing up my Temozolomide chemo by mid-November. I had an MRI a month ago, and so far, nothing has popped up in my head that shouldn't be there.

There was a topic being discussed on The Oprah Winfrey Show recently. What exactly are you all craving? I find myself sitting here staring at an empty fridge, wondering if I should just order something from DoorDash or actually attempt to cook something that isn't toast. Honestly, the decision fatigue is real today. Anyone else feeling that mid-day slump where nothing sounds good but everything sounds necessary?
The guests were just a group of teenagers, around fifteen years old, all struggling with significant weight issues. We’re talking anywhere from 220 to 350 pounds.
It’s not that they were actually hungry, you see. It’s much more complex than a simple physical craving. They weren't seeking out calories; they were using food as a makeshift substitute for something else entirely—something far more fundamental. It was a way to fill the void left by a lack of affection, a deficit of attention, or that deep-seated need to simply feel accepted by those around them. Food became a proxy for the emotional nourishment they were starving for.

quietraven0 said:So, how is your hair doing lately? Has it started growing back yet?
I realize some people might think it's trivial to discuss hair—that it’s a superficial concern—but honestly, I think anyone in this situation would find it incredibly difficult. Even if there isn't physical pain, the psychological toll can be absolutely crushing. Still, we adapt. We try to look for the silver lining in every dark cloud, so that's the mindset I'm attempting to maintain.

Once a month, I just shave my entire head. It’s been a full year since I finished radiation treatment. In the spots where my hair didn't fall out entirely, it grew back flatter; along the outer edges of the radiation zone, it came back thicker and curlier, but in the areas where the radiation was most intense, it stays thin and patchy. 😢Can anyone actually even begin to imagine what that looks like? 🙄
I keep holding onto the hope that it will all grow back, but I've recently started considering getting a wig.
That said, I have become quite accustomed to wearing scarves and being without hair.
And, truthfully, there is a certain practicality to having no hair at all. 😁 Before my tumor was discovered, I had hair that reached halfway down my back. Think of all the time, the shampoos, the conditioners, the various treatments... all that effort. Now, I don't need any of that; a simple baby shampoo does the trick. 😍

quietraven0 said:My mom started losing her hair this morning. Even though we discussed this and tried to mentally prepare ourselves, seeing it actually happen was still quite a shock to her system. I’m honestly torn—maybe it’s best to just shave it all off right now? I don't know if I'm making the right call. I plan on getting her a wig, but does anyone have advice on what to look for when shopping? And what kind of price range should we expect?

Honestly, it is best to just shave it all off immediately.
If you let it fall out naturally, you'll end up with hair all over the house that you can never seem to get rid of. Besides, seeing a single clump of hair left in your hand or on a pillow is far more traumatic than just looking at a bald head; you eventually just get used to the sight of a shaved head.
There is simply no way to predict how someone will truly react to hair loss. I personally thought I would be totally unfazed by it, but when that first strand stayed in my hand, I spent the entire day crying like it was a torrential downpour. 😢

slysurfer14 said:There is zero chance she qualifies for an accessibility placard.

Actually, there is. 😉
My cousin just got everything sorted at the beginning of this year—the official disabled parking placard and that specific ID card for roadside assistance. For the longest time, her disability rating was sitting at 70 percent, and she actually just had her hearing impairment rating bumped up by another ten percent. Honestly, she didn't even realize she was entitled to any of these privileges; it was actually her primary care physician who finally pointed out what she was eligible for.

Amanda Gray77 said:Certain pills can be crushed into powder or split in half, but other types just aren't designed that way. So, how on earth do you swallow those kinds? Also, what's the trick for getting down those massive capsules that seem to take up the whole throat?
I suspect this is a struggle for quite a few people out there.

It has reached a point where just looking at a pill or a capsule makes me feel physically nauseous.
During my last round of chemo, I was forced to take 18 different tablets and capsules all at once, every single day, on an empty stomach. I can manage the tablets somehow, but the capsules are a nightmare. Honestly, that weird plastic smell from the capsule itself when you bring it toward your mouth is absolutely revolting.
I try to mitigate the issue slightly by washing them down with a thick juice, which helps mask that medicinal aftertaste, and frankly, it’s much easier on the system too.
And yes, they specifically warned me that I cannot open the capsules to mix the powder into a glass of water.
The plastic shell of the capsule is meant to dissolve gradually in the stomach to ensure the medication absorption happens at the correct rate.