Hello. My name is Kathy and I live in Scottsdale. I, too struggled with denial letters from SS. Finally, a friend gave me the name of her attorney and I had SUCH success. They are located in Phoenix but practice in the entire state. Caldwell and Ober on 20th street and Camelback. I know I am sending this late but it’s my first time on this site and I love it. Thanks for all the articles and wonderful perspectives. Just reading them made me feel “sane” again. To all of us who suffer often in silence……KG

Hey Mama you are a passionate writer i guess i got my writer skills from u from the play i wrote to Life With Lupus ( speaking of which can u post that to i will e-mail it to u later cuz i wanna be heard just like u)

KIT MAMA(not that u have a choice[giggle])

To Diane…don’t wait to file for permanent disability! It took me 3 years to get approved, and I have a laundry list of qualifying ilnesses with well-documented, tested, doctor-approved back-up. Got denied twice…that’s just the nature of “the system”. Get an attorney that specializes in disability claims…don’t even think about getting one that can’t prove a long history of success. They know how to manage within the system, what needs to be filed, what experts are required in addition to your physicians, etc. I had letters and back-up documentation from 4 orthopaedic surgeons and 2 additional physicians, and still got denied! But in the end, my attorney got me approved. There are so many “fake” applications submitted, lots by people who are out of work long-term with the economy like it is and feel that’s a way of getting income, that it really sets back those of us who truly are disabled…thus the long waiting & processing period. Good luck!

I admire your change in thinking. I always try to be positive, but it gets hard. My husband is permanently disabled with heart problems and much more, and I am just so weary. He’s been sick for about 7 years, and his health problems will likely kill him within the next 10 years. I’ve been sick for 38 years, and while my fibromyalga, osteoarthritis, chronic migraines, and utterly all-encompassing fatigue aren’t likely to kill me, they do negatively affect my life. Worst of all, fibrofog is turning my brain into swiss cheese. I can’t concentrate long enough to read a chapter in a book; Something I always loved. But worse than that, my memory is a mess. My train of thought literally derails sometimes as often as every couple of minutes. My psychiatrist was going to run some cognitive tests, and then suddenly quit his job and left town. My long-time doctor also retired recently and moved away, so I’m starting all over with another provider. I have been unable to find a job in about 16 months and my unemployment is a couple weeks from being depleted, and after my husband urging me for the past couple of years I’ve finally decided it is time to file for disability as soon as the unemployment runs out, but I have no clue how to start and whether I’ll have doctors to support my claim. I couldn’t even find fibromyalgia or migraine on the list of diagnoses, so what do I do? File under chronic pain? I had hoped to work for a couple more years, but that isn’t working. I’m on a host of prescriptions, from morphine to xanax just so I can get out of bed, and often sleep for 16 hours at a time. Any suggestions from those who have been through the disability gauntlet with invisible diseases? I usually make my way through life with a positive attitude, but right now I feel totally lost and useless.

Twenty years ago, in a group therapy session for pain patients, the question of whether the glass is half full or half empty came up.
Unable to control my anger any longer, I blurted out, “It was just another dirty glass! Probably left in a room other than the kitchen and I’ll bet they didn’t even use a coaster!”
It was then I received my (obviously very correct) diagnosis of being OCD.
Whether the glass is half full or empty, sometimes you just have to let the glass be. I’m very slowly learning that the glass doesn’t matter. But I also know how the stress of obsessing over it can affect my health.
As far as ‘playing the hand I have been dealt’ – I fold!
RSD, Sjogren’s Syndrome, IBD, Hypothyroid, Fibromyalgia, etc.

One of my heroes was historian and author Tony Judt who recently died of Lou Gehrig’s disease. I have this quote hanging over my desk: “There is something to be said for simply doing the thing you would do anyway, doing it as well as you can under the circumstances, and getting past the sympathy vote as soon as possible.”

I’m not there yet… but reading that someone is, gives me hope. Thanks for this one. It really struck a chord for me.

I live by the motto, ‘Hope for the best, but plan for the worst” and try to be the best sick person I can be.

I know I had something else to say but I can’t remember now and my body says it is nap time. Great article, I loved it.

Ah, what a pleasure to encounter this piece! Thanks, Steph, for articulating what I couldn’t.

For me, when I got my lupus diagnosis, the whole Kubler-Ross grieving process got triggered. As we all know, it is hard to come to terms with the fact that you’re not going to get well again, that your whole healthy, overachieving life is over. Fortunately, I recognized the process, so I tried hard not to get stuck in the anger and denial phases. What helped me was the mantra “There’s something to be learned here.”

I don’t have enough gas for passion (a previous addiction of mine) any more, so I have tried to do something along the lines of listening — it’s clear to me that I don’t have the answers, nor do doctors or anyone else as far as I can tell. And when that’s the case, the smart thing to do is shut up and pay attention, IMO.

Here’s an example: Of course I had the usual demanding job when I got diagnosed, so my first task was to figure out what would let me have enough juice to do it. I found that something I came to call “observing the Sabbath” worked. If I took a day completely off — no to-do lists of any kind, no cooking, no errands, no direction, no activity that didn’t flow naturally — I could work the week without getting too sick to function. If I didn’t, I couldn’t. And when I “listened”, I remembered the whole notion of the sabbath, and felt like I’d rediscovered something we were told long ago that humans need.

I am still trying to pay attention, to see how to live my life with this big change at the center of it, and still learning. I’ve gotten used to the fact that even my closest friends still don’t really “get” it that I’ve got something un-fixable whose effects I can’t predict day to day — *grinning* I remember how hard it was for me to learn to understand that, and I was the one going through it!

Of course it’s always hard, and it feels lonely, and when a friend who’s been inconvenienced again gets mad and announces that I really have to DO something about this!, I do feel indignant and whiny. It isn’t fair, but I’m still a middle-class American with a pretty nice life — it’s not fair how much worse the lives of most people in, say, Haiti, or the Congo, or China, are either. But I figure God doesn’t make clerical errors — there’s a purpose to a Haitian life, and there’s a purpose to my diminished life too. I just need to pay attention.

Thanks for a well written article, Stephanie.

I think optimism or pessimism might be one of those random genetic traits. I’ve had little or no reason for optimism in my life if I stand back from it objectively. Yet I’ve got a tendency to look at the glass as half full if there’s anything in it at all, sometimes too much so if I’m in really deep trouble.

I can see what you’re saying. I don’t get mad if other people get sick and complain about it, even if it’s something as temporary as a cold or flu. They’re not used to it, that’s got to be its own shock to have so much to lose and wham, suddenly lose it all. A lot of spoonies here had extremely healthy lives before their diseases threw them down, in many ways that’s worse than what I went through being sick as long as I can remember.

I still see red if anyone accuses me of malingering, but that’s much more rare especially since I got on disability. People don’t doubt it now. I get more respect as a professional cripple – now if I accomplish anything people are genuinely impressed and do have a better idea of what I went through in order to get it done.

But to me there’s a difference between responding to a personal attack like being accused of laziness or malingering – or that hideous Tea Party phrase “living on the government teat.”

I never found it comforting the idea that “everything has a purpose.” I don’t understand why people think of that as comforting. My being this sick all the time is not a willing sacrifice. It’s not doing anybody any good my being sick. I would still be a good man if I was healthy, but I’d be a good man accomplishing a whole lot more for myself and others.

What that idea led to was people looking down on anyone unlucky as if they somehow deserved it. These things happen, life has hardships and some people have to face more of them than others. It could be worse – I could be this sick and live in a war zone where I couldn’t even run away from the soldiers like most sane people would. Someone dying in slow agony might envy my getting shot that quick in that situation.

My grandfather was never sick in his life. He bragged about that as if it was an accomplishment when it was just his genes and luck, like height or eye color or any other trait. He never had to deal with not being able to do things anyone else could do easily until he did finally get injured at work and get cancer from the injury. The last year of his life was pure nightmare because he couldn’t even understand it, that cancer shattered his view of who he was as much as it tortured his body. He might’ve been better off if the injury had just killed him outright.

But that’s also what taught me to feel for people who are usually strong and healthy but then get a cold or the flu. They have no practice dealing with it, no reserves, no expectations, no awareness of just how much a pill can help or getting enough rest can make it easier.

I do have some perks. There are a lot of good things in my life now – one of them is that being a professional cripple gets much more respect. Others are the good family I live with now, so much saner and more loving and gentle than the abuser that raised me. Or the things I can do, the novels I can write, the art I can create, the friends I have online. I love my cat. I’ve had him since he was six weeks old and he’s eleven – he is the world’s most amazing cat and I love him more every day. He borders on being a service cat sometimes, especially when he gives my bad hip Fuzzy Tummy Treatment and his warm little purring body does ease the pain.

I have good things in my life and I savor them to the fullest. But I don’t know whether that’s just a random genetic trait like being five five on my tall side and five four on my short side. It could just be random good luck against all the bad luck, so I won’t get as arrogant as my grandfather and think of my attitude as an achievement. Just be glad that I’ve got that twist of mind.

When I am objective, which is most of the time, this is exactly how I feel! What stands out the most is how pain is relative, and you never know what another has been through. Thanks for this!

Amen to that J. Elizabeth. W!! Someone accused me of being lazy today, just because I make light of my condition, and said at the moment that I was ‘doing nothing’. How can you explain the ups and downs, not having the spoons to deal with certain days? The fake ‘I’m fine’ smile you plaster on most days to get through, because you would never burden anyone with how you really feel and you know that if you did, your friends would fall away faster than a landslide?
I’m sick of being judged, just because I make a massive effort not to look sick when you see me, does not mean I’m all fixed!

Sorry. Bit angry today! Stephanie, your articles are inspiring, because of the reason stated above I try not to judge anyone, unless they do it to me first! Please keep posting, I love your sharp humour and realism, a real boost to my day! x

Amen sister!! I’ve got a good poker face too!! Hard to swallow a “you look so good today”, when you didn’t sleep a bit and you are in immense pain!! But we roll with the punches and keep going! Because in my opinion we are all here for a purpose and if I stop I can’t fulfill that purpose! I love what you have written here. It is wonderful, thank you!! I have intracranial hypertension, hashimotos, polycystic ovaries, budging discs and a pinched nerve in the neck…..but I AM a mom, a wife and a school social worker and a blessed child of God!

I don’t really get mad at people for complaining that they feel so bad, I just keep in mind that they are going based on what they have felt so far in their life. It may also be an accumulation of things that I don’t know about. What does fire me up is when people say that I’m faking, that I’m not sick, that I’m just lazy and faking it and a liar. How do you fake getting bronchitis, a UTI, or c-diff every time you go out in public? Even people who saw me go through chemotherapy have said I’m faking it and being lazy. I didn’t want to be too weak to go to the bathroom and wash my hands. You don’t fake chemotherapy and you don’t fake sleeping for a week straight because you’re so low on red blood cells. And, because I don’t look sick, I have trouble getting SSI. People anger me with that so much. Especially when the people who say everyone else who doesn’t look sick is faking it expect people to go out of their way to make THEM feel better and comforted when they’re hurting a tiny bit or feeling slightly weird because they ate something they shouldn’t have or didn’t take their medicine.

Thanks for this, it’s something I really needed to hear right now. I’ve been in such a funk with my stuff lately that it’s all I can think of and I can’t seem to dig out of my negative head. You’ve really given me a lot to reflect on. I really appreciate your honesty and I’m going to do my best to try and turn this around.

When you started talkiing about your poker face, now all I can hear is the Lady Gaga song. LOL! Maybe that can be my mantra! 🙂

Can we get a “Like” button here please!?!?!?! Love the honesty. This half empty person can relate.

Thanks for putting into words what I feel everyday! Prayers and hugs to you and everyone on the page!!!!

oh my god, there is someone else who has hashimotos??? i was beginning to thinkit was something my doctor had made up cos everyone since him just goes “hashiwhat?”. Hashimotos, great disease, basically im allergic to my own thyroxine so my natibdies destroy my thyrid gland. yeah, it rocks, really. and you know the worst thing???? my working tsh level was 2.6…yeah i know thats quite high but not outrageously so. my doctors surgery test range is 0.3 to 3.8 tsh as “normal”…normal for you aint normal for me guys!

I constantly check your twitter for a laugh, especially on the hard days. You’ve knocked another article out the ballpark! You’re awesome!

Nicely done. I like the honesty of the negative side of things you presented. And as hard as I try, sometimes, the glass IS just half empty. But I fight and I try to lean into the positive. I will take your words with me as I venture into the lighter side of living.