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Chronic Disease/Disability & Poverty
9 years ago

Iambeatle asked a very pertinent question that I feel needs to be thoroughly discussed by us because it effects us all. It is not right that just because our bodies may not function optimumly or have the more standardized appearance/ abilities (by whose standards anyway??!?!?!) that we are also subjected to crushing poverty, to inadequate/unavailable medical or other resources, to disrespect or outright hatred/bigotry, etc. We are people, too. We deserve dignity, respect, and access.

Here in this thread, let's be respectful and mindful of other's often extremely sensitive feelings... who wouldn't have hypersensitivity when having to face agony on a constant basis or even on a regular basis?! But, we will try to be gentle even as we rant, rave, weep, moan, and lament together.

Then let's see if there is more we can do to change things together.

Shall we?  

Oh, and thanks, Iambeatle for raising the issue.

Anonymous
9 years ago

THANK YOU!!!!

THIS IS A GREAT IDEA, WILL BE BACK TOMORROW!

s

DiXie

Anonymous
dang....
9 years ago

when this thread gets rolling I want to crosspost on Homeless group

this would be great information, that is perfect for our stress relief, stories, greetings, hugs, networking ~ yes, I love it!

DiXie

9 years ago
Part of the problem is that people see poverty and most chronic disease as something those affected could control "if they really wanted".

I remember when I was pregnant with my second child, I had gotten a mall job and heard a client come in and talk to the manager...just chit chat you know, and it happened to come out that one of her employees had become pregnant and all this woman could think of was how it affected her.  What an inconvenience!  And then she went on to say that this employee would probably further become a drain on society by going on welfare.

I kept quiet and did not mention at the time that we had just been approved for food stamps and medicaid.

The only chronic thing I've been diagnosed with is depression.  It's a bugger at times.  Especially now that I don't have medication.  Friends and faith get me through, but I wouldn't mind having the med back, y'know?

When I was getting job search assistance from a Women's Center (where I lived at the time), I tried to explain to the counselor about my depression and she was like "Well, you just have to decide not to be depressed."  It must be nice never to have had to deal with a chronic problem.  Too bad some people can't have a little more compassion.
9 years ago

Hear! Hear! LuAnn!! Exactly... why cannot people have more compassion? When someone has not experienced pain... I mean, real pain that goes beyond anything they can control or get over, that person really has no concept or frame of reference to begin to understand what we live with each and every minute. It is so easy to tell a depressed person or a fat person that we could get better if only we'd ____ (fill in the blank.) That is called "blaming the victim."

People are afraid of us because we represent sickness, decline, and even death to them. We represent the things they fear and, therefore, hate the most. So, they take it out on us. It is not right. It is not fair. It is wrong-headed of them. But, it is the current state of affairs in our world. Alas.

(But, of course, I never give up with that. I am just too ornery and fiesty to allow abuse anymore... or at least not for long. I try to have a strategy for how to demand and expect respect. But, that is another thread, I think.)

Dixie, you are on the money that this is especially important to homeless folk. Btw, gang, Dixie co-hosts a wonderful group here for the homeless.

omg
9 years ago

to all three of you--my heart goes out to you for your valiant struggles; not with pity, but with empathy.  you are right, in the sense that our society is set up with cracks that allow people to fall through; there are times that it seems that you are so far down that there is no way to pull yourself back up.

luann-i don't know if this is true in your area, but in california, county hospitals are linked to clinics where you can be treated for depression.  the service is poor and the waits are long, but they can probably provide you with generic prozac for next to nothing.  please see what's available in your area.

i had a patient about a year ago with fibromyalgia, and she was taking guafenisin (the same stuff found in cough syrup) in massive quantities (endorsed by our pain management specialist) and swore it made all the difference.  i have also read that ssri's (prozac, paxil, etc.)can be of some help with chronic pain.  the chemical messengers for chronic pain are different that those for acute pain, and supposedly these drugs partially block them.

ok, i didn't come here to advise, but hope this helps all of you a bit. i think it stinks when something beyond your control puts you in a position that makes it worse.

Losing your family
9 years ago

girl

The hardest thing about chronic pain, or disease, that results in disability is the rejection by family and friends as your resources dry up and they become fearful that they may become responsible for you.  They get tired of you never being able to make ends meet, not to mention extra for fun and games like them.  They get bored or disinterested in your symptoms that are increasingly a part of your life.  The gap widens.

I blame this largely on our government as they have made it impossible for us to provide for ourselves in many cases.  No one planned on becoming disabled.  If it happened to you before you were able to purchase insurance supplements to provide for yourself, or invest for your future, you are at the mercy of the government.  They make many treatments or meds unavailable if you are on Medicaid, or Medicare.  They scare anyone who is related to you that they will be made to pay your bills until their resources are depleted too if they get too "involved" with you, as more and more of your benefits are retracted or reduced.

Given that, when you have disesases like fibromyalgia, or even arthritis, you can appear to be quite healthy during "good" periods.  You may even convince yourself that you are capable of doing prohibited things.  But, your "good" days are never guaranteed.  This dissonance leads to disappointment and depression on our own parts, and suspicion and impatience from others.  None of this misery and drama is necessary in many cases, it seems, if disabled people had adequate income capabilities, and benefits.

line

9 years ago

Yes, absolutely true. And, those in power need us as object lessons to keep their workers afraid and in line. It's the threat of "do you want to wind up like them?" And, we are all made to believe that if we only follow "the rules," then we will never have to face whatever them does because they had it coming for not following the rules or they were born defective... some reason why they deserve the poverty, the disease, the disability, and the pain... and that the good we folk who obey the rules don't.

It's a divide and conquer tactic that works only too well, alas.

9 years ago

You are so right Daphne.  And, this is a "devide and conquer" administration. 

Besides, it's so much easier, and more personally gratifying, to blame victims than it is to help them.

Anonymous
don't shoot the messanger
9 years ago

I know this sounds bad yet I agress we are looked down at  we're the people in America people do not want to know and be.  To me they see the fact they to could be here

I for one have more problems, and family problems and money problems due to illnesses  all auto immue  and pain that it is hard to do anything every day and well I have in this week and started daily pain meds to function

yet, I was easier to ahve cancer it came I fought I won it's over

I had both breast gone in 1984 then I was only 34 years old yet I did have a few sets of implants  and yes they broke and yes I THINK it is not proven to the makers yet I KNOW I WAS NOT SICK BEFORE THEM

and the funds for my treatment could pay for one BIG BIG house !  yet my hubby has to work is is at 40 % in the VA system just to keep us going and it is not fair

the middle class is going most due to medical  we need something changed

so great to have people who understand

OH ADD SUGAR now to my list  I've not given full list I was afraid no one would beleive me,  yet from the steroids I've used to keep fluids off lungs heart  over the years and the flair ups when I was in bed for months at a time . . . well now sugar just this week

so I've a lot to learn on this and how to eat right

9 years ago
Barb You are definitely among friends here. You are very brave and strong to have survived all that and still have the courage to share here with us. Hurray for you!!! And, of course, we believe you. Many are in the same boat... or similar boats. Hang in there. And, we'll all try to hang in there together. Thank you for sharing.
Disability and Poverty
9 years ago

Well, today i found out that the dr is gonna do a TH(total hysterectomy).That is she will after she talks to my gastroenteroligist to make sure that the dramatic increase in my viral load from the Hep C isnt affecting my liver so bad that my blood wont clot.That would be After i stop the coumadin that i take for the mechanical heart valve that was put in during open heart surgery in 99.Oh and i have a mamogram tomorrow for the lump in my right breast.... All i can do at this point is shake my head and laugh.And they ask why i dont go to the doctor!!!..I am so grateful that i have an understanding family that has taken me in for the past year while i was waiting for my disability to be approved..I think I qualify...LOL...Actually it was approved in Dec. so now I am waiting for them to start payments so I can pay some(many!) debts...Anyway the Lamictal seems to work for the bi-polar syndrome and the Cymbalta for the depression...Or am i just manic???? probably not....thats just the very addictive Vicodin talking..I guess my point is that what the hell ya gonna do??Make the best of whatcha got and the heck with the rest!!! Thanks for this spot...it really does help

Sally

barb-
9 years ago

i agree, cancer is easier, though the medical community tends to regard it as chronic, since it likes to come back......if you are lucky enough to get the curable kind. and just try telling a life insurance company that it was ten or fifteen years ago!!!  magically, your calls just never get returned....

but....i'd love to hear from all of you on alternative pain management.  my husband and i have had some success with his acute episodes with whirlpools, yoga, massage,  (blue emu) and so on.....he generally won't try to do them as maintenance, because, as he says, then his entire life revolves around managing his pain.

9 years ago

OOPS!!
9 years ago

OOPS!
9 years ago

Sorry guys...im trying to figure out how to set this type...Not too good at this computer thingy yet.....

Sally

8 years ago

I get so sad and frustrated at times over the lack of resources we have - and of those resources we do have, they usually lack dignity and respect. I feel we live in a culture that validates only those who are healthy - a culture that not only invalidates those who are sick, but punishes them as well.

Medicaid has such poor coverage - for example: my teeth can rot out of my head for all they care - professional dental care is a luxury item to them. So I brush, floss, and mouthwash dilligently - and pray fervently that my teeth will somehow manage to last. As for any kinds of holistic healthcare - unless we can afford it, we can forget it!

When I was still able to afford it, I regularly saw a chiropracter, accupuncturist, and attended yoga clases. I saw and felt better results with these methods than I ever have with the healthcare that Medicaid provides. Ever since I could no longer afford the holistic healthcare options, I've been stuck only with whatever Medicaid will allow, and my health has deteriorated considerably.

And worse, I know that all of us on Medicare and/or Medicaid suffer in this way. This saddens me immensely.

8 years ago

I had this posted in another group for weightloss support - but I think it fits in here with this topic too - how quick our culture judges and blames - and in many cases judges and blames the victims.

Here goes...cut and paste...

This is what I find frustrating for me: I seem to only have to look at food in order to gain wight - and if I actually eat it, then I gain even more weight!

I usually eat very little and I am a strict vegetarian - so how is it that I managed to gain almost 100 pounds in less than a year's time? I admit that since 2001 - when I became sick with lupus, psoraisis, and other health problems - I don't exercise half as much as I used to exercise. However, so much gained weight...how? Has my metabolism really slowed down so much that everything I eat automatically turns to fat? Is that possible?

What upsets me, saddens me, and depresses me the most is that when people - even doctors and other health care professionals - meet me, many of them immediately assume that I gorge myself fast-food and junk-food all day, every day. I admit that about once a month I get hugely intense cravings (sweets, chocolate, cheese, and/or ice cream) and have a binge of sorts - but is a monthly binge enough to make me gain this much? Apparently so.

 I thought that by eating right and exercising I would never have to worry about becoming obese - overweight maybe sometimes but never obese - but then since 2001 all that has changed. Over the year 2002, I gained almost 100 pounds - and I haven't managed to lose any of it since - so now I am obese - with all the shame and embarassment that I feel along with it.

Does anybody else go though all this stuff that I've just described? If so, how do you deal with it? Is there any hope for me? I feel so discouraged right now - any encouragement would be most appreciated. Thank you so very much.

Best Wishes and Brightest Blessings!!!