Vulnerable

Anything on your mind that isn't about RLS/WED? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
badnights
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Re: Vulnerable

Postby badnights » Sun Oct 01, 2017 6:10 am

It used to be said that most WED specialists started out in psychiatry, pulmonology, or neurology. The last one because WED/RLS is a movement disorder, the first two because it's a sleep disorder. Physicians interested in sleep tend to come at it from either the psychiatric side or the sleep-disordered breathing side.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Vulnerable

Postby ViewsAskew » Mon Oct 02, 2017 3:48 pm

leggo_my_legs wrote:
I am feeling some hope today. Tulsi tea seems to help a bit. I also bought 2 hepa filter machines for my house and began a deep cleaning dust bunny purge today, mainly of my bedroom first. Didn't realize how incredibly dusty my house was.

Tomorrow I will try to change the cabin filter in my car too. Being generous with the benzos temporarily to help me not be so agitated and rest better.


YAY! All wins, small or otherwise, are good!
Ann - Take what you need, leave the rest

Managing Your RLS

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leggo_my_legs
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Re: Vulnerable

Postby leggo_my_legs » Wed Oct 04, 2017 5:07 am

Thanks Ann. I also finally found a pcp who will see me this thurs for my lungs. My pcp semi retired. She was worth her weight in gold but alas. ☹

I hope it's an ok visit. I hate getting harped on about my weight when I go. It's actually become a barrier to seeking medical care for me which is bad.

I have to say, being so exhausted and desperate, I actually am beginning to understand how people accidentally OD on meds. (Don't worry I'm safe. Just understanding how it's possible.)

In news of the happy, my first kratom order is en route!

And my schedule at one of the jobs is lighter the next 2 weeks. Hopefully I can get some answers from the doc and some good rest

badnights
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Re: Vulnerable

Postby badnights » Wed Oct 04, 2017 5:16 am

It's actually become a barrier to seeking medical care for me which is bad.
I wish that I could change the curriculum and teach budding doctors all these things that are so obvious from this side of the fence. EDITED: Meaning, teach them to back off, to understand the possible negative effects of their words.

You sound a lot more positive, I'm happy for that. I hope this new PCP is GOOD.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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!

Postby ViewsAskew » Wed Oct 04, 2017 5:46 am

badnights wrote:
It's actually become a barrier to seeking medical care for me which is bad.
I wish that I could change the curriculum and teach budding doctors all these things that are so obvious from this side of the fence. EDITED: Meaning, teach them to back off, to understand the possible negative effects of their words.


YES!!! While I imagine there are a few overweight people who have no idea about calories, everyone that I know who is heavy could just about recite calorie count, nutritional theory, and similar concepts. If it were that simple, no one would be heavy.

To add to your curriculum change, I would teach that the body - all of it - is not a collection of systems, but an integral one. You cannot change things in one area without impacting another. We break it up and have these silos of treatment - the kidney doc, the muscle doc, the skin doc, the heart doc, etc. - and while it is obvious it is one big system, they tend to focus on ONE subsystem and not really see how it works together. No one is heavy by calorie count alone.

badnights wrote:
You sound a lot more positive, I'm happy for that. I hope this new PCP is GOOD.


I agree - definitely you are coming from a different place and that makes me feel better, too. I have little issue with most change, but changing doctors tends to terrify me. Such wildly erratic results. Here is hoping you have an excellent outcome.
Ann - Take what you need, leave the rest



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Re: Vulnerable

Postby Polar Bear » Wed Oct 04, 2017 10:46 am

"""YES!!! While I imagine there are a few overweight people who have no idea about calories, everyone that I know who is heavy could just about recite calorie count, nutritional theory, and similar concepts. If it were that simple, no one would be heavy. """

I so agree with this. There is very little that I could not tell you about calorie values.
It is also my understanding that lack of sleep encourages weight gain - our hunger hormones increase, and then there are the adrenalin and cortisol spikes.
Cortisol speaks for itself, I was on prednisone for 18 months. 60mg daily for 6 months and then a taper over the next 12 months. In that time I put on 28 lbs.
Betty
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Rustsmith
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Re: Vulnerable

Postby Rustsmith » Wed Oct 04, 2017 1:37 pm

To add to your curriculum change, I would teach that the body - all of it - is not a collection of systems, but an integral one. You cannot change things in one area without impacting another. We break it up and have these silos of treatment - the kidney doc, the muscle doc, the skin doc, the heart doc, etc. - and while it is obvious it is one big system, they tend to focus on ONE subsystem and not really see how it works together. No one is heavy by calorie count alone.


Here, here!! A number of years ago, my wife was experiencing a vague abdominal pain. It started as an occasional pain that wasn't always in the same spot, but the frequency was increasing. Her PCP didn't offer much because the pain moved around. She went to an endocrinologist, who was positive that it was a hormonal imbalance and had her on a custom med that we had to travel across town to a compounding pharmacy to pick up. But the intensity and frequency of the pain increased to the point that I got a call at work to come home and take her to the ER because the endocrinologist was too busy to fit her in that day and she was in too much pain to drive herself. The ER doctor was adamant that it was constipation because of what he saw in an x-ray, even though the problem had been an ongoing issue. Fortunately, one of the ER nurses knew that the doctor was very wrong, even though he was so adamant that he refused to do anything more and told us to go home. The nurse admitted her to the hospital and arranged for a consult from the gastroenterologist on-call. Turned out that she had several ulcers and one of them had started to bleed. The gastro put her on meds to fix the ulcer and a year later she was fine.

The moral of all this is that the specialists all saw in her vague symptoms what their training biased their view to see. If not for the nurse, we would have gone home and a day or two later would have been back in the ER, probably for yet another incorrect diagnosis. I think that this is because the nurse was the only one who was a generalist and was willing to think outside a specialist's viewpoint box.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Polar Bear
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Re: Vulnerable

Postby Polar Bear » Wed Oct 04, 2017 3:51 pm

Rustsmith - that's actually quite frightening. We trust doctors because we have little other choice. And yet we don't trust them.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: Vulnerable

Postby badnights » Thu Oct 05, 2017 2:13 am

Horrifying story, Steve, but sadly not uncommon.

views wrote: I would teach that the body - all of it - is not a collection of systems, but an integral one. You cannot change things in one area without impacting another. We break it up and have these silos of treatment - the kidney doc, the muscle doc, the skin doc, the heart doc, etc. - and while it is obvious it is one big system, they tend to focus on ONE subsystem and not really see how it works together.
Ann, what you suggest is what functional medicine is supposed to be. Not what it actually is, because it has attracted all sorts of wing-nuts. I really like the premise of functional medicine, it makes intuitive sense. That approach is what gave me the improved quality of life I've had the last few years. I might have waited a lifetime before a regular doctor advised me to try changing my diet to help a neurological disease.
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: Vulnerable

Postby leggo_my_legs » Fri Oct 06, 2017 1:32 am

Thank you. It has been so nice to see the nonjudgmemtal comments after outing myself as fat lol.

MD said my lumgs are not inflamed. It's reactive airway disease and he thinks I'm on the mend tho I did tell him I feel awful. It was reassuring. He put me on a long acting inhaler powder breo ellipta. He took me off the aerosol inhalers.

He stopped in his tracks when he found out I take norco 5 mg and what it's for. My god, this is just 5 mg! They really have drummed it into these MDs that we pain patients are lepers.

I told him he didn't have to prescribe it and so he agreed I can be his patient. He had a poster in his office that said 'shorten your fat or shorten your life.' which I was not a fan of. He does some medical wt loss stuff and sells bars etc.

Personally for me anyway I think that stuff is BS. Sensible eating, exercise, and perhaps the help of a good nutritionist is where it's at.

I feel the medical weigjt loss industry is a profiteering scam for docs and weight loss industry. Lifestyle change, not special bars or meal replacement shakes.

ViewsAskew
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Re: Vulnerable

Postby ViewsAskew » Fri Oct 06, 2017 6:08 pm

badnights wrote:Horrifying story, Steve, but sadly not uncommon.

views wrote: I would teach that the body - all of it - is not a collection of systems, but an integral one. You cannot change things in one area without impacting another. We break it up and have these silos of treatment - the kidney doc, the muscle doc, the skin doc, the heart doc, etc. - and while it is obvious it is one big system, they tend to focus on ONE subsystem and not really see how it works together.
Ann, what you suggest is what functional medicine is supposed to be. Not what it actually is, because it has attracted all sorts of wing-nuts. I really like the premise of functional medicine, it makes intuitive sense. That approach is what gave me the improved quality of life I've had the last few years. I might have waited a lifetime before a regular doctor advised me to try changing my diet to help a neurological disease.


Agreed - was so happy when I first heard of it - functional medicine. Yet around here, those practicing are not science-based at all.
Ann - Take what you need, leave the rest



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Re: Vulnerable

Postby ViewsAskew » Fri Oct 06, 2017 6:10 pm

leggo_my_legs wrote:Thank you. It has been so nice to see the nonjudgmemtal comments after outing myself as fat lol.

MD said my lumgs are not inflamed. It's reactive airway disease and he thinks I'm on the mend tho I did tell him I feel awful. It was reassuring. He put me on a long acting inhaler powder breo ellipta. He took me off the aerosol inhalers.

He stopped in his tracks when he found out I take norco 5 mg and what it's for. My god, this is just 5 mg! They really have drummed it into these MDs that we pain patients are lepers.

I told him he didn't have to prescribe it and so he agreed I can be his patient. He had a poster in his office that said 'shorten your fat or shorten your life.' which I was not a fan of. He does some medical wt loss stuff and sells bars etc.

Personally for me anyway I think that stuff is BS. Sensible eating, exercise, and perhaps the help of a good nutritionist is where it's at.

I feel the medical weigjt loss industry is a profiteering scam for docs and weight loss industry. Lifestyle change, not special bars or meal replacement shakes.


So much I want to share, so little time. I spent years dieting - dieting up to my current weight. I stopped dieting and stopped gaining. Imagine that. In a capitalist economy, it is always about the money...
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Vulnerable

Postby badnights » Wed Oct 11, 2017 5:07 am

My son lost a lot of weight a year or two ago. He told me it was simply a matter of taking in less calories than he burned. But there are more things to consider - a healthy diet is paramount. Various things we eat can affect the way we eat, oddly enough - eg. eating sugars and simple carbs can grow the bad bugs in our guts, causing bug-poop to enter our bloodstream (ok I'm being silly, bacterial metabolites), which causes cravings for more sugars.

The thing that amazes me is how those of us who grew up being brainwashed that fat is bad have such a hard time making ourselves eat fat. When actually, there's mounting evidence that fat is good - well, trans-fats are bad, modified & hydrogenated fats are bad, but saturated fats from good sources are healthy; indeed, necessary. Our myelin sheaths are made of fat, our brains are fatty, we need fat especially if we have a neurological disease. For some people, a high-fat (that's very insanely high fat, for those of us who were brainwashed), low-carb diet is the best bet for losing weight. Which might explain why Ann stopped gaining once she stopped dieting - I'm guessing the diets were low fat.But it's not for everyone. I bought this little e-book, I think for $1 or something, by Nate Miyaki, The Truth about Carbs, it's a great summary of food knowledge and very readable. His website is full of free info too.

I am nervous about your doctor selling weight loss bars, that seems self-serving if not misinformed, either is scary for a doctor. At least he seems to know his respiratory stuff ??
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: Vulnerable

Postby leggo_my_legs » Sun Oct 15, 2017 8:29 am

I have appreciated all these replies. What an intelligent and well educated group.

I saw a dietician who said that too low or no fat diets are not good...the fat in food creates the feeling of satiety, ie fullness.

Beth, I agree with you regarding the food bars. I won't be buying any from him. I've lowered my expectations for PCPs...I just need someone to prescribe my ongoing meds.

Sadly, I was summarily rejected from new patient care by some other MDs for taking antidepressants, the occasional benzo, and norco.

I was voted off the island at the initial phone call inquiry stage...I literally could not find an MD! Now I think I am becoming suspect for having changed doctors too often, or am being noted as a problem patient. I liked my last doc but she retired.

I'm really starting to hate these doctors...especially the skinny young rich fit type like this guy...Can they just have an ounce of humanity to them?! Can someone see me as something other than a fat middle aged woman on multiple "no-no" meds?! I sound ridiculous but it's true lol.

I saw an ad on the internet with a picture of a "distinguished-looking" middle aged male MD. The ad said, "Women with breast cancer, take control back." Or something like that. It made me quite angry on behalf of women with breast cancer...it's like if you're sick YOU'RE somehow out of control, how sloppy of you to have become ill, etc. Maybe it was meant to be empowering in a society where control is everything, but I found it very offensive.

You know, life is messy. People get sick, people recover or live with it, or die. This is actually part of the normal state of things. I think it's all the drug companies marketing directly to patients; it's in their best interest to make people feel like crap about themselves. Yes, all comes down to money.

leggo_my_legs
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Re: Vulnerable

Postby leggo_my_legs » Sun Oct 15, 2017 8:38 am

Oh and the other thing he did...he gave me samples of the respiratory med. I was following him down the hall, and when he got to his drug sample cabinet, he literally asked me, "Can you step back please?" :lol: He didn't want me to see what he had in his cabinet! I wasn't even close enough to see it, and I had no plans to look over his shoulder; I just didn't know where we were going.

Plus he has a $100 new patient administrative fee. Never had that before. He wants the money and he wants to weed out people who can't pay it, is my guess.

I'm telling you, finding a non-HMO doctor in Sacramento is ridiculous. At least with the HMOs, they have to take you. With the PPOs, they can be extremely choosey. My job only offers PPO.


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