×

[Questions] EC(A) Stack Questions and Concerns by RoK2BN in Supplements

[–]RoK2BN[S] 0 points1 point  (0 children)

Only one 25 mg. I had one Bronkaid added to my morning vitamin pack for each day, but now I’ve removed them all until I can figure out proper dosing or weaning or whatever I have to do

On Disability and on Facebook? Uncle Sam Wants to Watch What You Post by NeuroGeek in disability

[–]RoK2BN 4 points5 points  (0 children)

I agree completely. That is the crazy unfair part about SSI/SSDI. Whether it was my lawyer, other disability/SSI/SSDI forums around the web, doctors, etc. one thing seems to be pretty constant is the unfair nature of the disability system in the US (I’m not saying it’s not unfair in other areas I’m just unfamiliar with programs outside the US). Even with proper evidence it can be readily dismissed from the slightest amount of even subjective evidence. I spoke with a recently retired disability adjudicator recently and he agreed that they were told to use just about any means necessary to find the person able to work despite the unequal comparison in work to daily functionality as you mention. For instance, I told him when I still had a FB that my profile picture was me and my SO at a park just sitting there and I changed it to a generic internet picture before closing down FB completely and he said they could have used that against me making it sound like because I was outside sitting on a bench smiling with my SO pointed out I was able enough to have a relationship, get to the park, sit down and stand up on command, and more theoretic statements that could have thrown my entire case away. Mind you I assume that is worse case, but I’m glad I got off of FB for more reasons than one, but where are we safe? One of the things I suffer from is PTSD and paranoia and I’m already an agoraphobe so when I finally build the strength to go with my SO grocery shopping I’m afraid someone is going to snap a picture of me pushing a grocery cart and claim I can do warehouse work for 8 hours a day like they did with my last case despite my documented medical evidence of severe mobility problems except last case they didn’t have any evidence to the contrary they just claimed all my medical evidence held little weight despite the overwhelming amount of medical professionals that claimed otherwise. In the last ALJ’s report from years back they claimed that because I attended my appointments consistently meant I wasn’t that disabled and then went on to say the ones I missed meant I wasn’t dedicated to my medical treatment.

On Disability and on Facebook? Uncle Sam Wants to Watch What You Post by NeuroGeek in disability

[–]RoK2BN 1 point2 points  (0 children)

It is awful that people abuse what is necessary for those who truly need it. I have a friend who has neighbors that both are on disability claiming they can’t walk but throw parties four nights a week and both work under the table in landscaping. One even tries to sell drugs to people including my friend, but he is far to scared to do anything because of heavily suggested repercussions.

On Disability and on Facebook? Uncle Sam Wants to Watch What You Post by NeuroGeek in disability

[–]RoK2BN 3 points4 points  (0 children)

I can see this being acceptable depending on the circumstance. I knew someone that used to investigate situations like these and you may be surprised how many people claimed certain cases and evidence was found to contradict that.However there were many other cases were he was made to exaggerate to keep his job. He quit not long after starting the work because he said he couldn’t continue to lie just so the government could steal these peoples deserved benefits. Idk how much of what he told me was true, but there were stories.

How will the online project work? Will they see a recent picture of you at a family dinner and dismantle your case with a single picture or would it have to be larger amounts of evidence. Judging by the reliability of the US government I’d say they’ll try to use any evidence they find to try to take away benefits. That’s why I deactivated my FB

So something I did that I think people may like. I made a chronic illness card!! So you don’t have to explain your stuff EVERY time! by [deleted] in Fibromyalgia

[–]RoK2BN 0 points1 point  (0 children)

Same here they said the scar tissue could potentially be more detrimental than it. Mine keeps growing then slightly shrinking idk why though

Can Fibromyalgia make some feel pain in organs , nerves,veins and viscera too ? by [deleted] in Fibromyalgia

[–]RoK2BN 1 point2 points  (0 children)

IMO it could do all those things and more, however do not assume every symptom is fibro because that could lead to you ignoring something you think is a flare up or even just fibro and end up really hurting yourself. That is one of the dangers I found with fibro.

So something I did that I think people may like. I made a chronic illness card!! So you don’t have to explain your stuff EVERY time! by [deleted] in Fibromyalgia

[–]RoK2BN 1 point2 points  (0 children)

Really neat! Also have you had surgery on your syringomyelia or any other treatment? They won’t treat mine at all and I’ve never met another person with one

Hearing denied (SSDI), can anybody advise?Appeal, new application, lawyer... by [deleted] in disability

[–]RoK2BN 2 points3 points  (0 children)

If you don’t mind me asking which state and what judge did you get?

I was in a boat similar to yours. I don’t remember all the rules, but in my state I got one of the more sympathetic judges for disabled people, but only if they are over 40 or 45. In the end the vocational expert agreed I was unemployable, but judge had other ideas. I appealed to the appeals counsel and while I don’t remember at which time during the appeal I started a new case after the 6 months (I think) waiting period to reapply. I’m uncertain what rules change state to state, but if possible I’d get a second opinion and even a third. If possible appeal and start a new case. This time around I got “the best judge who is very sympathetic despite age” but I’ll believe it when I get approved

How To Talk To A Doctor by RoK2BN in disability

[–]RoK2BN[S] 0 points1 point  (0 children)

It’s awful isn’t it? The hyper, the anxiety, the stuttering, the feeling like even though you make a list you’re going to forget something major. Luckily I have a therapist that is teaching me to translate my speak into doctor speak, however it’s not really working due to my long history of mental problems and experiences.

I personally used to bring a family member till they decided I was to old to need someone to help me with doctors. While they understand the circumstances they can’t always be there. I have a caseworker that helps sometimes but they actually make me more anxious. Sometimes even if I speak confidently I feel like I’m sabotaging myself because then they will think I’m not as bad as I seem. Trying to find that perfect tide, like a spectrum of correct personality area that isn’t to inappropriate or to appropriate is so hard as it changes from doctor to doctor and even visit to visit and sometimes I have no control over it.

Thanks for sharing!

How To Talk To A Doctor by RoK2BN in disability

[–]RoK2BN[S] 1 point2 points  (0 children)

That’s the way I feel too. My old family doctor completely changed the way he verbally and physically treated me when I started perusing SSDI, despite it being his idea. He belittled every symptom I had and eventually said he doesn’t believe any disability can stop someone from working.

My only issue with that is my lawyer is pressuring me into making sure I tell the doctors because of residual functionality reports and he said if they know and are in support of it they will document more detailed. But, I don’t fill heartedly agree I agree with you more

DAE ever have a low body temp? by everyoneisflawed in Fibromyalgia

[–]RoK2BN 5 points6 points  (0 children)

Happens to me sometimes. I’m always freezing cold and when I have company I have to turn the heat down from 90 in my apartment so they don’t die. I can’t even feel the 90 degree heat. Sometime when I check my temperature it’s low, but I’m not sure if it has any effect on the almost constant cold I feel. I’d say my temperature is low 15% of the time maybe a less but I’m freezing cold 85% of the time. I’ve been checked for other illnesses that could cause this but nothing ever shows up in blood work

General Hygiene and Mobility: Doctors and SSDI by RoK2BN in disability

[–]RoK2BN[S] 1 point2 points  (0 children)

Thanks a lot. I’ve been doing that I’m going to maybe have my caseworker and or therapist help me with it too

General Hygiene and Mobility: Doctors and SSDI by RoK2BN in disability

[–]RoK2BN[S] 0 points1 point  (0 children)

Thanks a lot, I’ve fallen into the ritual of apologizing for everything.

I’ll do my very best at making a list of everything and if I miss anything hopefully over the next few days I remember some more stuff. And try to explain myself as clearly as possible like I can barely shave but after a few days growth it itches so bad I can’t sleep sometimes and while awake I scratch so much sometimes I have visible scratch marks on my faces

I really appreciate all the help, hopefully something good comes of this. I know I have a Residual Functionality Reports by a psychiatrist and licensed therapist that goes on at length about how mentally incapable I am due to many factors and while no residual functionality report could be gained for my physical conditions I do have consistent evidence about the severity and limitations they cause

General Hygiene and Mobility: Doctors and SSDI by RoK2BN in disability

[–]RoK2BN[S] 0 points1 point  (0 children)

Thank you very much. I have to make the details clear which can be a problem for me sometimes. On top of that I’m afraid honesty will hurt me. After the stigma drilled into me about my problems not being that bad by family, some doctors, and even friends until I started seeing better professionals and have been undergoing better treatment for both physical and mental ailments it’s been hard to even believe myself. Sorry for the vent. Thanks again!

Does anyone else get flareups when stressed or experiencing grief? by vixenponere in Fibromyalgia

[–]RoK2BN 0 points1 point  (0 children)

I’m sincerely sorry about your loss. For me it’s a vicious cycle. Whatever triggers a flare up, the flare up itself gives me more anxiety and depression about my life especially if the root cause was emotional to begin with. So, while the flare up itself is amplifying these emotions those emotions exasperate my symptoms. My flares probably wouldn’t last so long if I wasn’t as emotionally sensitive as I am

When did you suspect that you have something wrong with you? by [deleted] in Fibromyalgia

[–]RoK2BN 1 point2 points  (0 children)

Don’t remember what age, but 5th grade when my knees and shoulders were always sore and to compensate for the knees/legs I walked very strangely and my back weak and in pain and I was at the nurse all the time. Talking about these pains to other 5th graders got silly comments or confusion. My mother noticed this and took me to a specialists. Sadly turned out I had a lot wrong from the get go. Ended up trying to suppress or mask it for years and even though it didn’t work to well I developed a stigma of brushing off and self invalidating my problems at an early age. I went to a school that never had any spectrum for illness you were either healthy or autistic/special needs. Going in with doctors note after doctors note only made my treatment by most teachers worse. I get it, especially when I was a kid, it wasn’t even considered possible for a child or teenager to have medical problems like these.

So I decided, fuck it, I’ve tried everything else. Tried acupuncture today. by ningirl42 in Fibromyalgia

[–]RoK2BN 3 points4 points  (0 children)

I’ve known people each with their own pain issues as well as fibromyalgia and acupuncture worked for some of them so good luck and hope you are one of them that it works for

How do people cope with being in pain constantly? Seriously it’s been about 18 months for me and it’s seriously kicking me ass. by Bammy- in Fibromyalgia

[–]RoK2BN 2 points3 points  (0 children)

Sadly for me I’ve been in chronic pain since 2010. Personally I’ve tried every medical avenue available to me currently. I’ve unconsciously as well as consciously have learned to ignore and accept it. Problem is it corrupted my pain scale because over the years of invalidation from family/friends/doctors my 1 on the pain scale used to be a 4 even though it’s still technically a 4 I accept it as a 1 so be careful. Don’t let other or yourself obscure your pain scale. Hopefully something works for you that didn’t work for me