I need your ear... near to panic | Arthritis Information

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Be warned: it’ll probably be a long post; I’m so full up, I’m spilling over.

 

This morning I went to SS to bring in the latest 15 page-packet . The gal at the window said "You wrote all this?". I thought to myself "no, my dog did it" and "no, I wished it onto the paper".  What I did say aloud, was that in my last efforts, the brief way didn't work, so this time I tried to be more clear.  Judging by my previous denial, I wonder if they even read it.  For one thing, I had to repeat all info of every doctor, hospital, clinic, lab, Xray, physical therapy and medication in the past year.... a lot of pages... again.

 

I tried to explain "how your conditions affect your daily activities" in layman language even though a doctor supposedly reads it.  ....................My denial said:  

---we see that you can move your arms satisfactorily

---you can walk

---we acknowledge you cannot reach up with left shoulder

---you should be able to carry 20lbs

---we do not feel your diarrhea is frequent or severe enough to interfere with work 

---we feel you should be able to sit 5-6 hours

---we feel you should be able to walk & stand 5-6 hours

***No mention of severe fatigue,  difficulties with fingers, hips, feet !

 

Argggh!  I'd like to see that analyst to try to keep his employer happy if he had all my stuff going on!

What if he……..…

---arrived late… because of difficulty dressing that day, or painful diarrhea took time to ease off

---then once there… he couldn't type or perform other finger-tasks long, sit long, stand long, walk long-or fast, and he couldn't carry more than papers with his left arm (bad shoulder) but his better shoulder was busy with the cane!

---maybe that's a day he gets hit with such a bad bout of diarrhea at work that he's stuck in the bathroom, in pain and nausea, for hours followed by abdominal/back aching + exhaustion ...knowing that happens 1-4 days/week -unexpected times, suddenly

---then, if that didn't happen that day, so he was still at work, what would his employer think about his absolute need for an afternoon 3 hour rest period, 2 of which are a deep sleep? …knowing he cannot avoid that level of fatigue, it just happens every day and sleep is the only cure. .. and that it feels like a high-fever with all-over body pains & such tiredness and real inability to think clearly.  His employer would be alarmed at his decreased mental concentration & be concerned for errors. 

---I bet  he would not have his job.

--then he would be like me, trying to convince someone he cannot hold down a job (though he’d probably know all the tricks to get disability approved). 

 

I told them before about the RA fingers/hips/shoulder/feet and utter fatigue as well as the unpredictable severe and frequent diarrhea from UC/IBS.  I have tried job trainings but end up leaving midway to sleep in my car or stuck in bathroom+lobby(back&forth).

 

I mean really.... what does it take to convince these people?  Talk about living a day in someone's shoes... he should try mine... oh, wait...my orthotics might not fit him. 

 

It's in their ballpark now, so I'm back to waiting mode, I hope for not too many more months.

 

My family is really angry about it too and I don't always want to talk about such negative things, or at least not for long. One daughter told me I’ve changed this year, which alarmed me. So now, I make an effort to always, with anybody, have the last half of a phone conversation and all evening show interest in the other person’s day/week and end on a happy, sweet or funny note (luckily, I laugh easily even to tv commercials). It requires The Great Denial of our dire circmstances, temporarily, to maintain sanity. My husband’s income has decreased to only ½ of 18months ago + mine, for 12 months, is gone, yet expenses are up (mostly medical even with insurance). We are selling our furniture, never go out, have not bought even socks in over a year, luckily I was able to make each daughter, sister, mom a small quilted landscape for Christmas for free, and we are losing our 3 bedroom home of 20 years. We need me to contribute income to afford even a tiny apartment. So, every evening when my husband comes home from work, in his 60s, exhausted, I need to be loving & cheerful. Of course that doesn’t mean he doesn’t have to make dinner!  It’s the only thing he likes to do around here and knows he does it better than me and some days it is a bad time for me. I always let him know how I appreciate it. This routine started during my first hardest flare-up when my hands truly did not function. We’ve kept it up because things change day to day for me. I can postpone cleaning up, but at a reasonable hour, we need to eat! 

 (He isn't home yet, good time to do this.) 

 

OK, I can let go of this for now. I still don't know proper protocol. I'm kinda concerned about posting this. Is it OK that I vented so much? I promise I won’t do it often.

 

Thank you for listening,

CathyMarie

Oh man, you have so much going on! I don't have any personal experience with applying for disability but I've heard it gets to the point where lawyers get involved. I think I may have heard here or on the news, with the unemployment rates being so high there are tons of folks lining up for checks. So that also makes it more difficult for you to get the help you desperately need. I think we have several members here who have been through the process that might be able to provide some insight. I'm sorry you're having such a rough time and hope it gets better quickly. Vent all you want!!
Cathy Marie,

It is such a struggle. My advice for the disability filing is to tomorrow morning call an ATTORNEY, get one that specializes in filing disability, they will be able to take care of all this for you. The stress of worrying about your home and husband and family and disability income is just to much. It is sweet your husband cooks, it is obvious he loves you. Be good to yourself, call the attorney.

Hugs to you,

Tink

Thanks,  I forgot to say that I have gotten a lawyer who specializes in disability.
 
I met him at a colitis conference. I pushed myself to stay until the lunch break just so I could talk with him. I love it that he believes these invisible diseases are disabling.
Unfortunately, he's been little help until now that I've been denied. This big packet I brought in today is a formal request for a hearing before a judge... in person.  The form says it could be 6-9 months from now. The lawyer says when we hear back, he will ask for them to expedite my date due to dire circumstances.  I'll believe it when I see it.  In case, you are wondering, the payment to this lawyer will be from my retroactive check that pays me for all the months since, I think, when I applied. His fee will be 20% or ,000... whichever is less. If I get a final denial, he takes no pay. I'll be having a big meeting with him close to the hearing date. He told me the hearing is more personal than court; it's done in a conference room, at a table.
Anyway, it the meantime, my life's kind of a mess. I don't feel well and I'm supposed to pack? and for what... a 1 bedroom apt? our funky little RV in a campground? and when.. April? May? June?  It had better not be April, or even May as it will take a very long time to deal with our belongings.  And every month that goes by, our previously great credit score goes down, so what apartment will accept us? See what I mean? It's a mess. 
Anyway, yes, I already have an attorney on board.  He called the denial "improper". I don't know whether to call it ignorant or shameful.
CathyMarie  

Glad you have a lawyer. He can expedite it by a few months, depending what state you are in. If you are losing your home and such, these are reasons to have it expedited. Please don't give up hope, hang onto it. I know it is hard not to worry about things, especially when they are wrapped all around you, but worry will get you know where, do what you can and know you have done what you can. hang in there girl............I wish I could say something that just would make it all ok. Hugs to you

Tink

 
sTinkerBell2009-03-11 19:20:55Of course it is OK that you vented! That is what we are here for!
I have absolutely 0 experience and/or knowledge in the subject but I wish you a lot of luck with your attorney. What gets me is I know people who really are able bodied who are somehow collecting disability. I don't know how it can be so hard for some and no problem for others! Maybe it has to do with the state you live in?
Prayers going up for your health, help with this claim and help with your finances. Hope you see some changes for the better soon.
I think you are doing everything right, and just need faith and patience for it to all fall into place.  Keeping an upbeat, positive, attitude that everything will work out is so important.  Just focus on all the good things, push the scary negative thoughts out, and embrace all that is good in your life.  Cling to it, look for positive things that happen each day and comment on them to yourself and others.  Thinking negatively and worrying is not good for you, your health, your family, or your life as a whole.  And it doesn't accomplish a darn thing either!  You have to believe with every fiber of your being that things are improving, life is turning the corner, and this is the start of something new, but positive.
 
It is very easy when you have constant pain and illness to turn inward, to focus primarily on the pain, or the newest symptom.  But try to focus outward on those around you, on the love you have for others, and the things that bring you joy and fulfillment.  Yes, you are sick, yes you need to acknowledge all that you struggle with each day, but make a decision that your illness is not you.  You are still a woman, a wife, a mother, a friend, and those are the parts of you that are important, not the illness.  The pain and illness is not your identity.  Allow yourself bad days, but don't let them become bad weeks, months.  Your life is too important to waste.
vent away!!  we understand.. no one understands better!!
 
Take care of you and I wish you much luck w/ this.. I have no experience to help..
Oh disability...so fun to try and get help...NOT.

I should have remained in Indiana first time around cause I was on disability, now they will not let me back on it...like i have been cured or something since I was able to move..excuse me...I was being pushed out my house what the H was I to do?

No jobs here, few jobs anywhere and no insurance for me and no matter how much I try to apply and get help, nothing.

Good luck on this, wished I knew ohow to fill one of those out to where you get the disability, I would surely help others in that cause this disease is so devestating.

oh yeah, lawyers do not help unless there is a huge pay at the end or upfront....nice huh?
Good Luck!
CathyMarie, You just go ahead and vent any time you need to, as much as you need to. That's what we are all here for, support, encouragement and sometimes if even all we can do is listen but even that can be a help. I am so sorry for what you are going through. Our social security system is certainly appalling to say the least.  I truly hope your lawyer can help you.  I will be keeping you in my prayers. God bless.

Edited for spelling of course mom2threeinaz2009-03-12 06:57:04Thank you so much... you are all wonderful.  I just came home from RD. While waiting I read an article in an arthritis magazine about how talking about your difficulties can be very benefitial, that if your family can only take a little of it, to go seek professional help.  I thought to myself... I have that already, with my RA forum friends!
CathyMarie

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