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Posted 8/13/2012 4:11 PM (GMT 0)
Lady, you have a chance to list this in section that asks for your disabling conditions and then the list of your doctors who treat them and any medications or medical devices (wheelchair!) needed on the Adult Disability Form. Hang in there! My depression started a million years ago but is still a major contributor to my disability today. It helps, too, if you have been seen in the last two years for your ankle situation. If you can get a thorough check-up for that by the doctor who saw it originally or a similar specialist, and have him/her list on your chart the problems you are having with it and how it affects you today, it might help. As always, go over this with DH to get a second opinion. :)

Snowbunny, we are in a similar situation. I went on SNAP in May and it's still hard to pull that card out at the grocery store. It stings every time that my life has come to this.

I am also divorced and signed off my half of the house, but was able to also get my name off the loan. However, I cannot get any credit either as I had a bankruptcy two years later. Not long after the Fibro diagnosis. Things have been falling apart for awhile. I've been trying to "fix" my situation for the last 5 years (starting after being asked for a divorce).

I'm worn out. Deep in the soul, not just physically. Being here is helping a lot, though. As is finally getting the history of my deteriorating health down on these forms, daunting as it is. This is more therapeutic than my shrink, even.

Okay, venting over. Thanks for listening!
Posted 8/13/2012 8:58 PM (GMT 0)
LWF...That's good that your Dr. will include the info for your ankle.

Karona...It sure does sound like we have a lot in common with our situations...This website is such a blessing to not feel so alone..

I had my 3 month PM appt. today. He's such a sweet man...when I told him that I had fallen and hurt my knee as well as irritated my lumbar herniation...he was saying, "Stop...I hate hearing about how you are hurting as I can't fix you:("....

So we went over the functional capacity (can't think of the exact name...but the one that SS sends to the Drs.) I am thankful that my Neurosurgeon is in the same office and they told me they would send in all my records together in the next week or so.

I just have to make sure the other two Neurosurgeons who did my previous surgeries send in their info.

The plus side is that I have been going to this PM since 2006 and he can show that we have tried literally everything for my pain for all these years from injections, steroids, PT, pain meds, etc.

I'm still keeping my hopes wayyyy down since it really does seem a lot of people get denied the first time around so I would rather plan for the long haul even though it's going to be very tough...

How are things with you all and any news on anyone else reading this going through the process? Come join our journey:) Thanks to Karona for starting this..
Posted 8/14/2012 9:18 PM (GMT 0)
I am have the worst time with this section. sad It's the one section that I feel could really hurt my case if I mess it up. I don't know the best way to answer without getting the wrong idea across. Please help!!!

14. HOUSE AND YARD WORK

a. List household chores, both indoors and outdoors, that you are able to do. (For example, cleaning, laundry, household repairs, ironing, mowing, etc.)

My house is very small (900 sq ft.) I am somewhat able to do the minimal cleaning, vacuuming, and small loads of laundry when needed. My yard is very small, so when I am able, I mow it myself. Most often I am not able to mow for weeks at a time.

b. How much time does it take you, and how often do you do each of these things?

Chores happen very sporadically and cannot be planned for. If am able to, I can vacuum for about 20 minutes but will be unable to do anything for the rest of the day, so I often skip for weeks at a time. The same for lawncare. I am only able to mow very rarely and for about a half hour. It completely debilitates me for the rest of the day and the day after. Smaller chores like laundry do not consume as much energy if I am able to do small loads every few weeks or longer. I do other chores like ironing, windows, and small repairs only a few times yearly, or sometimes not at all.

c. Do you need help or encouragement doing these things?

YES

If "YES," what help is needed?

I often have breakdowns where I need emotional support from friends to help me through the very bad days, which are most of the time now. I cannot keep the house up nor the lawn. I live in a state of constant disarray with a dirty house and overgrown lawn. I feel very isolated, lonely, and useless. The depression worsens when the symptoms worsen making the smallest tasks seem impossible.
Posted 8/14/2012 11:32 PM (GMT 0)
I think you have answered these very honestly. That is what is expected as we should never try to make things worse or better than they are, especially on the off chance they ever have someone coming out to look at us and see you doing the lawn one time if you say you cannot do this ever.

I would only tweak the last answer a bit more on what type of help is needed. I would leave out the one sentence of feeling isolated and lonely as they are asking for a specific answer on what type of help you get to handle the tasks listed previously. I would leave in the part about the constant disarray as that is describing the state of things to give them a picture so that is good.

Does anyone (friends or family) ever come to help with your lawn or clean your house? Have you ever paid for someone to do this?

Just my thoughts and hopefully others will chime in...
Posted 8/15/2012 3:57 PM (GMT 0)
I GOT IT! I had a "eureka" moment while lying in bed this morning!

POST-EXTERTIONAL MALAISE

THIS. This is what I have so much trouble explaining to friends and family and doctors and total strangers. This is the root of my frustration with this $&%! disorder and my own self!

Debilitating fatigue ruins my life even more than my pain does. I've always had pain, since I was a little girl. I didn't even know that others didn't have pain all the time until my 20s when it started interfering with work. The pain is much much worse now, but the fatigue dogs me day and night and is so intense I ended up in the ER for it once after not getting out of bed for three days.

I need to explain precisely how this fatigue causes post-extertional malaise, and how post-extertional malaise has cost me everything: work, my marriage, my social life. I need to explain how it effects my ability to do daily activities and why it's so random and unreliable. Why some days I can even mow my own lawn and yet the next day not be able to stay awake enough to read a book.

HOLY CRAP I FINALLY FIGURED THIS PART OUT. The Function Report has been the monkey on my back for months because I couldn't adequately explain why I can do some things and not others, not just on the form, but to anyone.

Thank you for sharing this moment with me. XOXOXO

links:
chronicfatigue.about.com/od/cfsglossary/g/malaise.htm
www.cfidsselfhelp.org/library/post-exertional-malaise
chronicfatigue.about.com/b/2011/07/19/chronic-fatigue-syndrome-basics-post-exertional-malaise.htm
Posted 8/15/2012 4:05 PM (GMT 0)
I tell my husband that no one can understand what this is like unless they live it. He has understood more as time goes by since he has started to have health issues. How do you tell someone yes, i can go do xx with you but , if i do i can not do yy the next day with someone else. So give me a minute to weigh which or who is more important.
I do not like people visiting my house, cause some days it is an absolute mess. No, I am not lazy, but today i might not have been able to use the broom or vacuum. How do you tell someone on paper what it is like? I figure that social security has heard it all. But that means they have read papers where people have exagerated. Yes, it will sound terrible but it is the truth.
Posted 8/15/2012 4:13 PM (GMT 0)
Lady, I have the exact same problem. I cannot do xx one day and then yy the next day even though everyone does that day after day with no problems. I, too, cannot have guests because many days I never make it out of my pajamas, much less straighten up the house.

I am going to make a point of answering all the questions about how far I can walk, how long I can stand, etc, by explaining how it would go the first day, then the next, and then the the third. I don't care how much room it takes up, they need know asking me how I get through a single day does not give an adequate snapshot of my life with fibro!

Good on your hubby for understanding. I have a best friend who finally "gets" it after getting sick one year and it lingered for a few months. Thankfully she explains it thoroughly to the rest of our friends whenever they ask about my health. Now, if I could get my dad to understand, I would cry tears of joy.
Posted 8/15/2012 4:22 PM (GMT 0)
" Now, if I could get my dad to understand, I would cry tears of joy."

with me, it is my daughter. She has grown up (born in 1986) seeing me not doing somethings or laying around. Hubby has always spoilt me. Mostly due to my health. I pray she does not get this, but at the same time, I want her to understand. Make sense?

I am not going to lie on the forms but how do i put i spend a lot of time on the computer and not have them say i can work in a job with a computer? I live with pain every day. I have not taken pain pills because i get so sleepy i could not drive to work or even concentrate on mundane things. I was told to take tylenol as that does not effect the blood thinner. Afraid to ask for something stronger, that they will think after all this time, i am "wanting " drugs or just want it for the application.
Posted 8/15/2012 4:22 PM (GMT 0)
I certainly have my moments of fatigue....but for me, when I was put on Ambien after my last fusion surgery...it was literally a miracle medicine for me!

As I've written on other threads, my Rheumy who diagnosed me back in the mid 90's always thought that Fibro (and some other illnesses like CFS, Gulf war syndrome, etc) has a lot to do with not getting to stage 4 sleep. This is the deep sleep where our bodies/immune system will repair themselves. So day after day, month after month, year after year, for those of us who don't get to that deep sleep, our bodies begin to rebel.

I used to sleep for 10..12 hours when I was a teenager and early 20's and never felt rested...Always exhausted...that bone weary...can't think...can't function fatigue.

And obviously there are many non medicinal ways to help someone sleep first...but I had tried them all so Ambien was our last resort.

It has made an incredible difference in my fatigue levels where I do not nap during the day...(which I learned anyway is bad to do regardless as that would defeat getting good sleep at night) As well as keeping my bedroom nice and cool...below 68 degrees. I turn off all electronics...and all the lights...and lay in the dark with my eyes closed listening to a book each night. This has helped me fall asleep easier as well.

I go to bed at the exact same time each night and get up at the same time...That's one of the only things that I can control myself as my pain levels have a mind of their own...LOL

The other thing I did was switch to eating all Organic 2 years ago. Getting rid of all the preservatives and chemicals has also changed my fatigue levels as well as digestion...although I have to use Miralax a few times a week because of my pain medicine.

And then lastly...I eat 6 small meals a day...so pretty much every few hours I eat something that contains both a protein and a complex carb as it helps process the carbs better and turn into energy longer.

Obviously I still have my bad days as when the pain levels are high this can make me exhausted...But the difference in fatigue from before Ambien and after has been quite amazing.

I have just learned to tell friends or family that I have good days and bad days and that I unfortunately can't know which it's going to be:(

Thankfull with the new SS regulations on disability regarding Fibromyalgia they will know what you are meaning when you talk about the fatigue and the good days and bad.

As I mentioned...just be honest and descriptive as you can be to answer each question.
Posted 8/15/2012 5:13 PM (GMT 0)
Lady I know exactly how you feel! I have not had good luck with many of the meds used to treat Fibro mostly because they make me so tired I'm useless! My ex-husband admitted recently that he was extremely frustrated with my constant "laziness" and now he finally understands what that was all about. I didn't know what it was all about either, I just felt like a failure a lot of the time. It has caused me to believe that I am a bad person, and that I don't try hard enough. Something that is very hard to undo even as an adult.

I feel so relieved to have a NAME for this particular symptom of Fibro that really explains my situation.

Snowbunny, THIS: I used to sleep for 10..12 hours when I was a teenager and early 20's and never felt rested...Always exhausted...that bone weary...can't think...can't function fatigue. THIS WAS ME. Sleeping through my morning classes, never had energy to dress nicely or do my hair, made me feel self-conscious. Couldn't explain it.

I loved Ambien! It was amazing. It worked perfectly for 3 weeks but stopped working for me entirely after 6 weeks and by then I had developed restless leg syndrome and very disturbing daytime symptoms of visual trails, tingling, shakiness, and rapid heartbeat, along with severe fogginess from the daily withdrawal, so I did not want to increase the dose. In fact, I have very similar stories of problems with Lyrica, Neurontin, and even Welbutrin (much as I loved that med). I mostly end up with shakes and rapid heartbeat that gets overwhelming and makes me feel like I can't breathe. (Ambien was extra weird for me.) And I was on some of these for a long time. If I were dealing with just pain, I think some of these would be wonder drugs for me!

I am very glad to hear you do not have as intense of an issue with fatigue. Especially that you can regulate your sleep schedule like that! I'd had conversations with two acquaintances with Fibro who both mentioned that they regulated their sleep and their Fibro went into remission very quickly. I was crushed when I tried it myself and only ended up completely crashing hard time after time. That was 3 years ago. I now sleep when I feel the need to, which is often 12 hours at night and with a 4 hour nap during the really bad days. I hope some day that I can be regulated like you are now. I'm still not sure why the fatigue is still getting worse. It does make me paranoid that something else is going on but the doctor's never find anything.

I would like to get my diet straightened out someday, but I barely get up to eat so I am stuck with easy-to-make foods and such for the moment. I do eat 6 small meals a day, and I love it. I recommend to everyone, healthy or sick.

I have a very sneaky suspicion about the chemicals we put in our foods and I very much cannot wait to see what information we find about the link to our health in the future. Either way, I truly believe they WILL figure out what is happening to us, and we WILL be taken seriously!!!

Post Edited (karona) : 8/15/2012 11:24:14 AM (GMT-6)

Posted 8/15/2012 7:37 PM (GMT 0)

karona said...
Lady I know exactly how you feel! I have not had good luck with many of the meds used to treat Fibro mostly because they make me so tired I'm useless! My ex-husband admitted recently that he was extremely frustrated with my constant "laziness" and now he finally understands what that was all about. I didn't know what it was all about either, I just felt like a failure a lot of the time. It has caused me to believe that I am a bad person, and that I don't try hard enough. Something that is very hard to undo even as an adult.

I feel so relieved to have a NAME for this particular symptom of Fibro that really explains my situation.

I always feel a little better to have a name for whatever is bothering me. You put into words how i feel. I kept trying to tell myself i was not lazy, something was actually wrong. But it gets to you. I keep telling my husband he might have been better off not marrying me, or if i had not made it through this last bout of illness. He reassures me but it is always in the back of my mind that he deserves a better help mate.
Posted 8/15/2012 7:55 PM (GMT 0)
Unfortunately I didn't start using the Ambien until we already filed for divorce as my ex couldn't handle my pain or the fatigue or understand why some days were better than others. Sympathy was not his strong suit! LOL

So, I can truly empathize with you all. And I'm sure part of my fatigue levels getting better is that I am not working so that is more time to just be "resting" per say...even if I'm not sleeping.

LWF...I'm sure your hubby loves you!! Can you get him to come with you to Dr. appts? This can be very helpful...
Posted 8/15/2012 8:24 PM (GMT 0)
I am also in the process of filing for ssi. I will be checking in on this thread often. I hate going through this process. I did it once before and was denied. I hope to get better results this time.

Hugs, Karen...
Posted 8/15/2012 8:36 PM (GMT 0)
Dh goes sometimes to the dr with me, though he hates medical offices. He has a week vacation coming up, told him he is going to take 1 day for me to see the dr. so we can talk about meds.
Posted 8/16/2012 1:09 AM (GMT 0)
Hi getting by. So glad you joined us. I fully expect to get denied but wanted to do the initial application myself, so here I am.

I am not at a stage where I can relax yet. Even if I get disability right away (ha ha ha), it's not enough to pay the bills so I need to figure out what I'm going to do. I am already on the tightest budget possible without giving up phone and internet and, god forbid, my car (that I'd get nothing for). And even then it wouldn't be nearly enough to help.

xoxo
Posted 8/16/2012 1:33 AM (GMT 0)
I hear ya there Karona....I won't breathe a sigh of relieve until the day I am absolutely approved, and money is in the bank! I've been reading up on here and a few other places just how long it takes so many people....years and years! I mean...I know there are a few people on these boards that go it quickly...but that is not the norm.

So I am like you in wondering what I am going to do if time drags on too long about how to survive financially.

And because I don't know when they will consider my actual disability date...I don't know if I'll have enough credits for SSDI, but I know I would for SSI if they approve me. But that is only $698 a month in Virginia and we are one of the states that doesn't have a supplemental fund that also gives money to those disabled and in need. Make sure you check and see if your state is one of the good ones!

So I don't know how I will do it physically...but I will have to drag myself to a part time job if I only get SSI as that won't be enough to live on:(

Getting by...we are happy you have joined our thread! Do you feel like sharing more about your previous time applying and what happened. And what illnesses are you applying on this time...both Fibro and depression?
Posted 8/16/2012 3:06 AM (GMT 0)
I filed for SSDI and SSI last May and was denied. That was before I was diagnosed with fibro. What steps would I take to get my new diagnoses submitted. All of the other Drs. that I have seen were clueless. I am not even sure if the new Dr. is on board with not working when having fibro...............Any suggestions.
Posted 8/16/2012 1:34 PM (GMT 0)
The first time, I went through all the hoops, getting their doctors to look at me and say nothing was wrong. I applied for fibro, arthritis, and depression. But it was hard to get it then, I have heard it is easier to get now that we have different people in office. I don't know if it really makes a difference or not. But I do believe at the time I applied, that nobody was getting it. So I am hoping that they will be a little more understanding this time. I had a mean judge too though. One of the worst. He said I could sell tickets at a ticket booth or work in a toll booth. Which there are none around here. I really hope I get it this time, if I do, in two years I will be able to draw social security. I really want to be able to work though. It breaks my heart as I am sure it does all of yours. We'll see what happens this time around. I already have tried to call a lady at social security office for two days. She told me to call her, but never returns my calls. Oh well, that is the system for you. I hope it is easier this time around. Thanks for welcoming me to this thread. It is very interesting. Thank you to whoever started it. I already forgot. Fibro fog...

I hope you all have a great day.

Hugs, Karen...

Thank you Karona...

Posted 8/16/2012 4:48 PM (GMT 0)

getting by said...
The first time, I went through all the hoops, getting their doctors to look at me and say nothing was wrong. I applied for fibro, <nobr><a id="FALINK_2_0_2" class="FAtxtL" href="#">arthritis</a></nobr>, and depression. But it was hard to get it then, I have heard it is easier to get now that we have different people in office. I don't know if it really makes a difference or not. But I do believe at the time I applied, that nobody was getting it. So I am hoping that they will be a little more understanding this time. I had a mean judge too though. One of the worst. He said I could sell tickets at a ticket booth or work in a toll booth. Which there are none around here. I really hope I get it this time, if I do, in two years I will be able to draw social security. I really want to be able to work though. It breaks my heart as I am sure it does all of yours. We'll see what happens this time around. I already have tried to call a lady at <nobr><a id="FALINK_1_0_0" class="FAtxtL" href="#">social security office</a></nobr> for two days. She told me to call her, but never returns my calls. Oh well, that is the system for you. I hope it is easier this time around. Thanks for welcoming me to this thread. It is very interesting. Thank you to whoever started it. I already forgot. Fibro fog...

I hope you all have a great day.

Hugs, Karen...
Thank you Karona...



I was also told that i could work taking tickets in a movie theater when i went before the judge on my ssi appeal. One of the issues the drs had said i had was that repetitive movement of my arms would be impossible due to pain. I got lucky, the atty for social security was doing one of her first cases. She would say i could work with a computer, then turn around and say i had no technical skills. She kept condriticting her self. Even my lawyer said she screwed up several times and i was lucky. I was in my late 20's or early 30's at the time. That worked against me i was told. I am now 48 so i am hoping being older will help some.
Posted 8/16/2012 5:34 PM (GMT 0)
Thank you so much everyone for sharing your experiences with us! I am glad to see examples listed: tollbooth, ticket-taker, computer work, etc. I have answers for all but need to make them more concise:

With physical work I cannot stand for more than 20 minutes without needing to sit down. BUT, I cannot sit for more than 20 minutes without needing to lay down! I spend most of my time in a reclined position or flat out in bed.

With computer work I am not able to consistency meet deadlines or fulfillment requirements. I cannot concentrate for more than an hour or two a day, or for more than 3 days a week. Even with that much, it is not a reliable occurrence. I could not choose, say, Monday, Wednesday, and Friday (I've tried). I have flareups for unknown reasons several times a month. During a flareup I am unable to sit up, stand, or stay awake to do work for at least 3-5 days in a row. As an example, this 10-page Function Report has taken me four months to fill out, even with extensive help.

(I'm sure I'm missing something, or could use better wording. If you have any suggestions, I'm open!)

xoxo
Posted 8/16/2012 7:58 PM (GMT 0)
The more I keep reading about it, the more it's about making sure we have the Drs. that are saying the exact same thing about our abilities. Whether it is the ones that we have now, or the ones that they may send us to from SS.

So, we may say that we can only sit, stand, or use are arms for x amount of time, but they only weigh this with a certain percentage. We have to have total back up from the Drs.
Posted 8/16/2012 8:03 PM (GMT 0)
Snowbunny I'm glad you said this, because now that I think about it, it makes a lot of sense. I think I may have to sit down with my Rheumy. I'm guessing there's a form they are going to send him. I'm going to call his office.

Great tip!

Edit: Well, the very helpful nurse (ahem) said their office will call me for an appointment to over the forms when my Dr. gets them from Social Security. So... I am kinda nervous but I made sure to ask that they will definitely call me, and she said they will.
Posted 8/16/2012 8:12 PM (GMT 0)
This is what I just did with my PM as we were talking about the process. He said that people should be honest about their limitations but make sure it lines up closely with the function report that the Dr. will do. As well as what you have shared with your Dr. over the time period...as in all the things at home that you can/can't do so that your Dr. truly understands how limited you have been.

The other thing they (SS) wants to know and what they will find out from your medical records is if you have tried literally every treatment there is for the particular illness.

They will definitely call you because they have to do the testing on you in person and write it all down:). They will test what you can do with your arms, legs, range of motion, etc.

 

Post Edited (Snowbunny21) : 8/16/2012 2:15:37 PM (GMT-6)

Posted 8/17/2012 12:12 AM (GMT 0)
I really like this thread, I am learning a lot. Thank you all...

When I filled out (or I should say my doctor at that time, who was a physicians assistant, so they wouldn't use any of her reports in my favor) forms, my doctor (pa) said that when they ask you questions, think of the things as eight hours a day, five days a week. Such as you were saying repetative motion, can you do that eight hours a day, five days a week? No... It all comes down to whether you can continue to do these things. They make it as hard for you as they can. I still question myself as to whether I deserve to get disability, or should I continue to try to work... This is really hard for me.

Thanks for all the comments. Like I say, I am learning a lot.

Hugs, Karen
Posted 8/17/2012 2:45 AM (GMT 0)
I can't remember if it's on the other thread we started...but are we allowed to post a link to the site Disability Secrets? Or you can Google it. It explains a LOT of things in detail. Especially about what are considered "treating physicians" and how important it is to get their comments and function report. It also talks about not bouncing around from one Dr. to another as they need to see a clear cut treament over time of one's illness.
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