Disability

I'm so frustrated..need to vent.
Does anyone of you fellow Chronies have any experience with Disability....here's my story:
I filed right after my first re-section. My sister who is a nurse in oncology suggested I better start making my paper trail...so I did. I think she knew better than I what this terrible disease will eventually do. She gives infusions to Chronies all day long. The part of my intestines they took out....well I don't absorb to much anymore. With no values..I go to the bathroom 4-6 times a day and on bad...non stop cramping.

2 years ago I was denied. At that point I went from working full-time down to part-time and a year ago...only able to really do 15 hours a week...with occasionally 20 during holidays...if I pushed it .Of course this ment....sleep rest and don't do anything just so I could get through 6 hours of work.. Social life...what social life? The type of job I do is physical and I'm on my feet the whole time. My fatigue just continues to get worse. Some days I know I should even drive because of being dizzy, feeling nausea, and my memory. However, the last people I worked for had a real heart for me. They always scheduled another person with me so I was able to use the bathroom at any time. As of last spring I was denied diability a second time. I cried. It's so frustrating. I've always been on top of my game and in authority at my job. Now, instead of the leader....I'm the one who calls in sick. I get left behind....not able to socialize or go on scheduled trips etc. Pride is hard to swallow.
All I want is my career and health back. I don't want to be at home crapping all day long! Feeling fatigue and depression...and Jthe JOINT PAIN.( which now they want to test me for RA in 3 months)
Anyway, had another appt via phone with lawyer today and now they want me to appear in court. They want me to call all my Docotor and tell them I'm applying for Disability and get them to approve. They told me it looks bad that I haven't lost any weight in the past year. Even though I'm going to the bathroom 4-6 times a day. I said the phenomenon is interesting to ME too! Would help if I could MOVE like I used to!!!
Anyway, could use some words of experience in this matter. Some support. Some days I just want to crawl in a hole and not come out. It's difficult to explain to people / lawyers/ public about my butt habits alllll the time.....
Thanks

ok this may sound mean, but its true. when your filling out the forms for you disability, you must spell the names of the disease's and conditions correctly.. if some paper pusher is looking at your paper work and looks up "chrons" in the manual, they wont find it and they aren't going to look very hard to find it. when you say 'stomach herniation" , do you mean abdominal hernia along the incision? they wont find stomach herniation in the book either. "same for "gullbladder" etc.. you have to be precise and lead these people by the nose to what you want. maybe you would have a better case if you based your claim on the back problems? i doubt your going to succeed with only 2 crohn's surgeries and so little bowel removed. the reason you not loosing weight is that your absorbing more than you think. the loss of that small amount of intestine , your body really would not even notice. i wish you good luck, and dont let the lawyers suck you dry.

flowery
Please don't feel alone. I too have applyed for disability after my GI told me I could no longer work. The doc is actually the one that filled out the papers. I have been rufused 3 different times.It's been 2 years I haven't work, now really feeling it finacaly. So the third time, the gov wanted me to see one of their doctors. No problem. Except the visit took about 15 minutes. He touched my stomach, said my crohn's is under control. My thought: I was going to the hospital for 10 years atleast 3 times a year with flar ups but they could never figure it out untill 6 years ago.So how can he look at me and tell me my crohn's is under control?!?!?! He said remicade was doing me good. My thoughts:Why then have I got antibodies from the remicade, now suffer from horrifing arthritis pain. Unable to move,walk,sleep, eat, open things. Hardly able to make it to the bathroom, so much pain.So how is remicade helping? when I have an ER visit once or twice a month. He stated I was able to do gain full work on a regural basis. My thoughts: Most days I can't get out of bed the pain is so bad and crippling.

I'm at a lost, and frustrated because I need the sad $500 they give for disability. On top ,the money I spend of meds a month!!

Where do you live?

Montreal, Canada here.

 

flowery, im sorry, but im just saying you have to watch out for yourself. ill be the first to admit im a lousy speller and gramatically incorrect. but experiance has proven that these things matter. any lawyer or dr familiar with these forms and applications should tell you this, and that you need to be very specific about your problems. for instance when someone says they go to the bathroom alot, they want it spelled out. as in i wake up and go, i get to work and i have to go, 1 hour into work and i have to go, in the middle of this work procedure i have to go etc... they want to know exactly when and where your pain is, dont just say 'my belly hurts. you say - i have unrelenting 10 scale pain about 2 inches to the left of my bellybutton- or for your back, - i have extreme sharp pain in my lower back whenever i .... stoop, bend, lift- i require pain medication every x number of hours which makes it dangerous for me to drive, work on machinery, or use dangerous tools.= again im sorry it sounded mean, it was not meant that way. sometimes im just a little blunt :o)

I live in massachusetts and was denied the first time on my own--second time hired a disability lawyer and contacted my state representative and was awarded the disability. It took me a little over a year before everything was done. The first time I was denied because i was not mentally disabled--they stated I was physically disabled but that I was not mentally disabled so they said no. When I contacted my state rep he was appauled. I really think I got it because of him!! Don't give up-you will get it and when you do they will go back retroactive to the first date you applied. My husband and I were able to put a deposit on our first home with my retroactive check!!

RA & CD, and others

Thanks for your reply. I live in Minnesota.

I'am starting  to realize I need to be more specific about my disease... become more informed.  To be honest, I didn't even look up anything on it because of pure fear and denial. Been sick off and on my whole life. Didn't want to deal with one more thing.  I've always been the type of person who deals with changes slowly. It was just easier for me to believe (aside from taking lots of meds) that it wasn't going to affect me like the others. Well that's changed.

My lawyer is a qualified disability lawyer. I've seen "their" doctor's and like you said RA&CD my appointment was about 15 minutes! I think if you can carry any kind of conversation with the Dr. he's like your fine. They don't realize that you haven't even talked to another human being outside of your home for weeks that maybe it's just nice to SEE someone! but, seriously I'd love to go back to school to learn something I can use more of my brain in...I may have to. I don't know. My career now has been impossible to do.

I haven't been diagnosed with RA yet...My Dr. wants to see if my flare continues (joint pain) gets better or worse over the next few months. He gave me some non-narcotic pain meds.  I agreed to wait.  I don't want another diagnosis. It took me a year to believe the crohns one. My rhyme had me all set up for remicade and my GI dr. said no...not yet. Meanwhile, I've been in too much pain to work, do anystairs, or even sleep in the same position for a lone period of time.My thumb joints catch and swell and I can't move them.  My feet and ankles swell and my back is in alot of pain. crippling me at times.

I knew that this was going to be a touchy subject. I appreciate the support and experience from you all.

It is my understanding that you cannot get disability unless you have not worked for more than 6 month. So long as you work you are not disabled.

 

"It is my understanding that you cannot get disability unless you have not worked for more than 6 month. So long as you work you are not disabled."

I'm not sure where you live.

I'm in NY. I applied only 1 month after I was out of work for SSD.

SSI maybe different but there is no 6 month waiting period for applying to SSD.

 

I can vouch for you not having to wait 6 months before getting paid here in Canada, Or Montreal atleast. My dad fell very ill over the past winter. And he was able to get it right away. He got paid right away. I think it end up being about 3 weeks after he fell ill at work. I really beleive each state has it's own rules. Nothing like Canada

Flowery the one thing I want to ask you, has any of your drs stated that you are unable to peform any type of employmen?t If the drs do not have this in your medical records you are are going to have a difficult time proving you are disabled. My gi is the one that told me no more work, you need to take a medical retirement, I will send them any kind of report they need.

I was awarded benefits within 6 months. NoGuts is so right, you do have to spell everything out for those people. You must be specific, they do not read between the lines.

Its my understanding that if a person was employed they could not file for disability, but I may be wrong. So do not take my word for it. 

Why is your atty asking you to contact drs? He should have been getting your medical records all along, including all updated medical records. SS does request copies of your medical records, however, they are not that great in getting updated info. Many claims for disability are denied because of not having complete medical records. They base their decision on records at hand.

I do hope your hearing goes well for you . Good luck.

FitzyK23 at keast here in the states your understanding is the same as mine. Also, was told you cannot be actively working and file for SSD. I am sure other countries are different like the person from Canada responded.

Congrats on last year in law school.

I have been on SSD now for over a year for my Crohn's disease and thought that maybe there is some advice that I can give you. BE HONEST. This disease sucks and we are all going to have to live with it for there rest of our lives, but please do not sensationalize or dramatize your symptoms inorder to get on disability. It will not work and the judge or person that is handling your case will see right through it. The disabiliy process can be a long and diffecult road to go down. They make it that way to weed out those that are trying to take advantage of the system. about 9 of 10 people will be denied atleast 2 times before they are approved. It can take years to be approved and you should prepare for the worst but hope for the best. If at all possible, I recommend hiring a good law firm that has expertise with the disability field and they will do the majority of the dirty work for you. Here are some of the guidelines that I tell everyone that is applying.:
1: Talk to all of your doctors first before applying and make sure that they are all onboard with you applying and will support you 100%. A huge part off your being approved depends on the reports that they right and the tests that show that you are disabled.
2: Be very thorough in all of your paperwork and make copies of everything that you send and receive.
3: Print off and save any emails that you send or are sent to you
4: Document the time, date, and length of every phone call that you have with them. Keep notes about what the call was about and who you spoke with including employee numbers. If at all possible I even recommend taping the call
5. Make sure that you fill out every form with the same exact answers. Many of the forms are reduntant and they want to see if you are really telling the same story each time.(hence making copies of the forms that you send in)
6: do not be dramatic when describing you disease, but also do not hold back about your symptoms. Be honest and tell them the truth about what your day is like. Tell them the good things that you can do when you are feeling good and how the bad days stop you from being able to do them.
7: They do ask what your hobbies are and you need to tell them so that if they ever investigate you later, this will not come back on you. For example, I told them that I am a big hunter and fisherman and love to still do them when my body allows me to. I explained that now instead of hiking I have to use an Atv to get around and that I now require the use of a RV instead of tenting due to the fact that I need a bathroom(of couse I like the added comfort too) By telling them this and being approved with this information on record, I am now able to still do these hobbies when I am feeling good enough without having to constantly be looking over my shoulder in fear that I am going to get in trouble.
8.Do not get discouraged when you get denied the first few times. For some like myself you may be approved right away( i was approved the second time in a 3 month span) Many of the people that do the initial reviews of your case probably do not know much about Crohn's disease and they will find any reason to deny you. My first time that I applied I nearly was in tears when I read the denial saying that they felt like I did not even have bowel problems let alone Crohn's diease. This being after multiple operations and my being on Remicade for nearly 4 years at the time. My lawyers laughed at their response and said that was so typical and that they were trying to intimidate me into stopping the process and to make sure that I was not a hypocondriac.
Good luck and I offer any help or advice that I can to those applying

Just one quick thought, I took colestid and after a year it made my cramps and diarrhea worse, so my doc stopped it and things improved. Best wishes and prayers