Saturday, November 28, 2020

Healthcare in America for the Chronically Ill is Broken.

    I was just reading an article in The Guardian, about eating disorders, and it got me thinking. They mentioned things we with chronic illness are familiar with - misdiagnoses, being diagnosed with a psychiatric disorder we don't have, being told we're drug seekers, feeling like you're applying for the job of your illness just to get care, being told you're lying, being told you're not sick, being told your test results are normal so you must not be sick, dismissive "care", rushed "care", rude "care" - and we have very little power, or recourse. 

Plus, if we don't know what's even wrong with us yet, what can we do but make more doctors appointments, miss work for them, pay for them - sometimes out of pocket, creating a snowball effect that can lead to being disabled unnecessarily, homelessness, and even suicide.

There are times when it's so hard to go to another appointment - whether due to mental or physical health, money, time off issues, transportation etc. Doctors are treated like clergy, insurance plays games. If you complain, stick up for yourself, or change doctors too often, you can get black balled, a family member put in charge of your care, you can get treated badly because the doctor you're trying to get away from is the head of the department and you have no other options but that medical facility, etc. Etc. Etc. 

It looks like healthcare in the UK is very very messed up too, but they do have this one bit of patient advocacy I was impressed with, a "care quality alert, a report of a systematic failure to care for a patient". I've not gone through all of the horrors above, but many. Many. And it's beyond disappointing, when your entire world is crumbling, you can't get the care you need, and there's not a single person taking responsibility for the cascade of failures. 

I've talked to my other chronically ill friends - whether mental or physical, about how it would be SO NICE to just go back to your past doctors and tell them what you have! (If it's ever figured out.) 

If I hadn't have been doing constant research, and creating community with my chronically ill friends, and on social media talking to people all over the world, would I now know my diagnosis? No. I wouldn't. Because I have a rare disease. And so do many many others.

Even if I did get the chance to go back to all of my doctors to tell them what they missed, they'd have to remember me- and some of them wouldn't, much less the details of my case.

Plus, here's what happened when I went to my last rheumatologist. I was still "under her care" at the time. I told her I'd been diagnosed (Correctly. Though I wasn't snarky, or rude in any way. She had helped me, even though she'd misdiagnosed me.) and her reaction was all ego. She basically fired me on the spot. "Well, I guess there's nothing we can do for you here! Nice having you as a client.",  exit stage left. I've since found a very good rheumatologist that actually knows about my condition. I think my doctor just didn't know about my condition, and instead of helping me find someone who did, that was left up to me. I found my doctor through my support system/online community, which not everyone has. 

Most, to all of the time, it's not that the doctors don't care, it's that they don't know. Bodies are complex, dynamic systems. There is no way most doctors are going to understand an illness that spans rheumatology, neurology, immunology, surgery, gynecology, physiotherapy, etc. The way that the American health system is set up, from school to care, is in wheelhouses. If they don't know, and they can admit it without throwing the blame back at you, they'll refer you forward. Right now, it's your primary care doctor that gets to try and put that puzzle together. So they have to understand all of these bits and bites, AND know about all possible conditions it could be. And that's unreasonable to expect of anyone. So we're expected to have a "team" of specialists. Which can get expensive, fast. 

I realize that I'm a long term user of the system, not a care provider, and I *know* I've got blind spots, and am  misunderstanding parts of why care is failing us. But when it comes down to it, doctors are humans. They can only know so much, they have families, lives, only so much time, egos, mental and physical illnesses too. We're all fighting some seen or unseen battle.

It's the system. Insurance is broken, healthcare systems are fractured, and it's often left up to the patient to figure it out themselves or go undiagnosed. Which is impossible for many to do. It's a system that's set up for us all to fail. (Sometimes it works fantastically and smoothly! But that's not often the case for us rare disease, and pain centric, pan-specialty cases. And there are a LOT of people falling through the cracks.) 

It would *really* help if there was a better patient advocacy system. If there was a flag for doctors to get more training - and be paid to do so. And a flag for doctors who are mistreating and being unkind in big ways, and in the smaller ways - by gaslighting and dismissing patients complaints.

Unfortunately, this opinion piece is as much as I know what to do to fix this huge out-of-control beast of a disjointed system. But I'll keep doing research. And I'll keep putting my voice out there for those who can't. But I only have so many spoons. 

Am I being petty by wanting my past doctors to know they misdiagnosed me? Or would it, perhaps, help them spot my condition in another person coming to them for advice? What do you think?



Thursday, March 19, 2020

3 contraindicated common herbs for Cv-19

Okay, so Covid-19 creates a cytokine storm, which is one of the primary ways it kills people.

 *Elderberry, Echinacea, and Astragalus* can raise the cytokine levels. Which could make a mild case of the virus worse. Possibly deadly.

Researchers are still working on how to control cytokine storms caused by coronavirus related illnesses:
https://tinyurl.com/qs9lm8c and not everyone getting seriously ill is going to the hospital, for mostly financial reasons. So they take what they can get at the store. 

So in the meantime we can at least keep from exacerbating the situation with common herbal treatments, where we could use other herbs instead. 

ELDERBERRY is a great immune system builder. You can usually take it to boost your immune system, but if you get Cv-19. It can trigger a cytokine storm.
https://pubmed.ncbi.nlm.nih.gov/11399518/

"Elderberry possesses immunomodulatory properties through stimulation of cytokines."
https://www.sciencedirect.com/science/article/abs/pii/S1756464619300313

The two together can create too many cytokines. Which can cause a worsening of symptoms, and possibly death. Why risk this, when other herbal treatments are available? 

ECHINACEA https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3205674/

ASTRAGALUS https://pubmed.ncbi.nlm.nih.gov/18655554/) 
 
Since you won't know you have the virus until *at least* 12 hours after you catch Cv-19, just hold off on these herbs while the pandemic is here. 

Additional article. 
http://www.naturalmedicinemamas.com/nmm-blog/cytokine-storm-and-herbs-life-or-death-information

As much as I use herbs myself, I'm going to believe doctors, and chemical & biomolecular engineers, over Stephen Buhner. Who's apparently digging in his heels over this. 
https://www.stephenharrodbuhner.com/wp-content/uploads/2020/03/coronavirus.txt.pdf

He's the author of twenty-one books on herbal medicine, in depth belief in Gaian functioning and plant ecology. I understand where he's coming from, but I don't support his stance on elderberry. 
https://www.chelseagreen.com/writer/stephen-harrod-buhner.

I'll stick with scientific journals. I'm not a doctor, or any certified medical professional, I'm not licensed to give health advice. Just sharing what I'm learning. Consult a physician if you're feeling ill. Y'all stay healthy now, ya hear?

Image credit: jaye19

Tuesday, December 18, 2018

I don't know 12/17/18

 Sometimes I think of living alone in the woods with just books and animals. Maybe that's how I'll die, alone in the woods. That would be fine. As long as I'm comfortable.
Right now, I'm cold, which hurts. Kiddo is awake and has been for the last half hour. It's 3am.
Cedar is high. But isn't bothering me as much as last year. Though this year *is* 3 weeks early.

Wednesday, November 14, 2018

New life?

So I started taking Cymbalta, and stopped taking 5 other drugs. Yeah, I've been on a barely working cocktail for years. So now I'm feeling way way less pain. Like, it's nuts. Both how good it feels in my body, and how much pain I was in before.

So now what? I'm trying to figure out what being functional again even looks like. I've been swimming. And the Cymbalta is really suppressing my appetite. So I see being in shape, and slimming up being a part of this.

The MRI said I have spondylosis of at least the cervical vertebrae. And really the only thing I can do for that is the backstroke. Which I'm already doing. The doctor suggested it, and then laughed, like but no one does that. And I was like, no, I do! And she was surprised and said I was ahead of the game! So that's awesome.

And I've upped how much I'm doing it. And swimming longer. Hunter's class is 40 minutes. I'm trying to swim the entire time. Sometimes pausing to get my breath between laps.

Doing this regularly is changing my swimming. Like, I feel less like I'm flail-panicking through the water, and more like I'm stretch-moving along. Paying attention to how my legs and feet are moving, how full rotation of my arms is impacting my shoulders. How I'm holding my head relaxes my whole body etc. I asked Hunter's swim teacher for a tip on the back stroke. It was hurting my shoulders. And she showed me a completely different way than what I was doing. So now I get to incorporate that...

It's like trying to learn a dance without a teacher.

Anyway, today was the first time I've gotten to swim since I got on Cymbalta. It felt much more comfortable. I hurt right now, from the effort. But I'm hoping I won't flare from it.

I'm relearning how to live without constant massive pain. It's...still very confusing. It's been like 8.5 years of it. And even before then, I wasn't very good at consistent exercise. So yeah, change. A lot to process.

Friday, May 11, 2018

It hurts

Flare. Skin like bruises, fire, ripped, road rash, nettles, sunburn, needles, so much pain. There was a spot on my leg that I thought would have marks it hurt so badly. My shower was like a rain of glass.
My toes each feel like fire. My bones hurt.
How will I live with this for the rest of my life? How will anyone depend on me to be able to do anything? How can I be a good mother and wife? How will I live?
I've been in pain, and migraines, and flared since I don't know, this weekend some time. I know it'll end, or ease up. But it only feels like forever.

Monday, March 19, 2018

End of the trail

We hiked slowly down the trail, pausing to pick up trash, or strewn articles of clothing.  Chasing the little paths that animals make, down to streams where we walked over the fallen trees that become bridges.

We kept going downhill, because that's what you do. The trails ended, but I knew down there was the river. So we followed the little animal trails through the trees, the deep grasses, the Smilax, the Dewberry, the grasping bedstraw.

We got down to the banks, my little boy and me, we found a way to get down into the water. We didn't take our boots off, we just waded through the shallow rushing waters to the little islands of sand, or stone, mud, or algae that looked like islands. We threw rocks in, skipped rocks over, waded up and down the river. So fun and carefree.

Right then, I felt that feeling. You know that feeling, when your hair stands on end, the chills radiates down your arms and your legs from your heart. And then I heard it, steps. In the trees above us. There's no way they couldn't have heard us. But maybe I was wrong. So to my tiny, beautiful as sun, seven-year-old, I said, "get down!" he hesitated. I said, "get down. If I ever say get down, you get down immediately." He asks why, as you would. I said, "I heard steps. We're near the prison. It could be someone who's escaped, or someone looking for them. Or a hunter. Either way we need to get down."

I heard a few more steps, and then nothing. I peered over the little sandbar island, covered in detritus from floods come and gone. I only heard a few more steps and then nothing. I kept watching and waiting. There wasn't really anything I could do but watch. So I just looked.

I've lived in the country most of my life, I can spot a bunny twitching it's ear, a football field away. So I crouched and watched the leaves dapple, the wind bend to the trees, the shadows against the bark, I looked everywhere. And then I saw movement. Just a small one, the tiniest - of a human head ducking behind a tree so as not to be seen. *shit* One of those ducks that a hunter knows. One of those swift silent movements that you make when you've been trained to make one. Trained. So. We're dealing with someone trained. Someone. I'm squatting here, behind this tiny island, with my 7 year old son. I have nothing. Not my phone, my knife, no way out, and far enough of a hike that no one would wander through here any time soon.

Isn't it always the times when you're least prepared, that the most fucked up shit happens? Like the time I got caught in a flash flood, and I was wearing slip. All my years of constantly carrying knives, and survival gear just randomly in my pockets, and the one time I actually might need to use something like that I'm wearing a slip. Universal morbidity.

But here I am, behind this island. I'm wearing normal clothes but I don't have my knife. I'm in boots, my kid's in boots. But nothing else. How do I get us out of this? I'm watching them, hidden down as far as I can be, and then I see the glint. Just the tiniest moving reflection catching on a scope lense. One pointed in our direction

Tuesday, February 13, 2018

Flare day

Pain. Like, woke me up. My skin hurts. Pressure hurts. Like the pressure of my pants around my legs. The hair on my legs hurts. My tongue fucking hurts. My bladder hurts. My freaking organs hurt. What the hell.

My arms and hands hurt. I need my hands to paint. Holy crap. I'm terrified that my body won't let me keep painting.

I got pt today. It hurt. But I'm walking better.