The Pain

[LeslieP367]

Hi, my name is Leslie and I have recently been diagnosed with IC a couple of weeks ago, but have been dealing with IC since May. I am in tears everyday with the pain. My doctor is starting me on some pain meds, but they are not doing a thing.

I work in a physically demanding job, and I find that I cannot work, i am in too much pain. I am constantly moving around and lifting things that are about 40 lbs. I get to be in so much pain that I start to sweat. I try and stay still as long as possible, but it is hard seeing as I have a lot of customers to assist during my shift. there are many times that I would rather stay at home and just not move, but I have a lot of bills to pay and my husband cannot do it on his own.

I am currently looking into disability for this, at least until I can get the pain under control. I was wondering if there was anyone out there who has maybe applied for this and has succeeded. If anyone has any advice what so ever on pain control or Disability, I would really appreciate it.

I am just glad that there are people that I can talk to who know what I am going through.

[starflight]

This is exactly what I was thinking about just now, I myself don't have a paper trail of medical documentation so I'd need to begin there. I'll need to find a doctor and pay out of pocket for the needed tests, etc. Although my pain is under control for now it's simply unbearable when it does occur (and that's minor!) My real concerns are what exactly happens in the coming years should I choose to ignore it longer, being 28 it never surfaced as an issue until around August although microscopic blood was in my urine at every urinalysis I've had.

Advice on what one does when someone is starting out, not precisely interested in disability but if it gets bad enough I'll need it as an option.

[Glenda2]

Disability is Very Hard to Get for Many Conditions.

Social Security regards these type health conditions as > Treatable with Medication.

They are more apt to give benefits for conditions where folks are in a Wheel Chair , Paralised , Blind , Deaf , Missing Limbs , Mentally Disabled with Retardation. And Harsh Ailments like this.
Those cases go thru prety easy.

It's when you have cases that are like IC , and anything else that Could be treated with Medication that SS denies the claims.
You have to fight them , and prove your case , and Have Years of Medical Proof to show Why it disables you. It can't just be > I have to "P" 100 times daily.

I tried for Disability for a different Health Issue I have , and I fought them for 6 and 1/2 Years , and was Denied 3 times , and even went to Court. With My doctor in Attendance. I had over 20 + years of Proof showing I was disabled.

If you are going to try for SS Disability > Prepair for a Battle and a Fight*
They will Deny you ! Appeal every Denial. Keep records of everything.
Doctor visits , procedures done , medications taken.

[ICNDonna]

Some people do get disability for interstitial cystitis. You might want to at least look into applying. Another option is to see if you can find a job that doesn't require lifting. I know I can't lift anything that heavy without bladder pain.


Donna

[mary124]

I would get a note from one of your doctors stating that you can't left more than xxx amount of pounds. I have one somewhere in my file for this (not for IC) and for the most part it helps.

[Glenda2]

A Medical Doctor would have to prove beyond a shadow of a doubt you are flat out disabled by your IC to the Social Security Dept.

I fought those dirty buggers for 6 and 1/2 years due to my Tumor Disease.
I have Thousands of Tumors On and In my Body. My Spine is Riddeled with Dozens of them and I have leaking spinal fluid at every level of my spine.
With over 20 years of Proof , they still denied me 3 times , so I contacted one of our state Senator woman and pleaded for help.
She was my Best Buddy. She personally took on my case and contacted a SSA Law Judge Buddy of her's , and Got my Case on his desk , and I went to court with My doctor in attendance. He reviewd my file , thick as a watermelon is wide.

If your going to try for Disability , You need Proof , Years of it.
My 20 years was barely enough.

[123456]

Hey Leslie,

Look into the insurance benefits of your company. They may include FMLA and short term disability. These could enable you to miss work to get the treatments you need without getting fired. I applied for intermittant FMLA so that I could take off a couple days here and there if I have a flare. It also helps cover me if I have PT or a doctor appointment in the middle of the day. FMLA usually allows you to use your vacation/sick time until you run out. Then, you don't get paid. If you can go on short term disability, you can get 60% of your salary. At least that's better than nothing. Please really check into your benefits. I had to get all the old paperwork that I had saved and call all the numbers just to see what it all meant. It's worth the research.

[Mrs. Peel]

You're very brave to be working so hard with all that pain. I know, you do what you have to do, but it's still brave.

This is a really bad time for job-hunting, but a job change or temporary disability may be necessary in order for your bladder to heal.

I've had to give up my career at least until my symptoms are under control (Elmiron worked, but am still having nasty flares with hormonal fluxes) because the job is too strenuous. I have some financial support and can do other things, but I miss using my special skill.

Following the diet and avoiding physical injury (ie bike riding) have made a huge difference, so I'm going to start trying my old job a few days here and there. Much sooner than I'd expected to be able to.

Best of luck to you, whatever you do.

[Julie B]

I actually agree with Donna. If you get a doctor's note, they are required to accommodate you. You also have to exhaust your disability benefits that you may have through work before SSDI can kick in. FMLA is good if you need the time off, however, you do not get paid for time off with FMLA.

If you are still considering disability, we have a great educational section here at ICN:

http://www.ic-network.com/disability/

Although some people have had problems getting the disability, I don't want you to be too discouraged. Many people with IC ARE successful at getting it. Keep posting for information here on the boards. I am sure you will learn a lot about how to go through the system.

[crkshnks79]

I am currently appyling for disability . I got myself a lawyer who doesnt get paid unless I do and then he takes a certain portion of the payout from the months / years that I wouldve been receiving disability . It is possible to get disability for IC , I know some women who have received it in under 2 yrs ! SO dont give up ! Like the others said , be prepaired to fight and also document everything , ask for copies of everything , keep it all in one place . Is it hard to find a doctor who will agree to do it , but there are docs out there who will help , especially if you have been trying all the treatments and meds and nothing has really helped you ... I am totally unable to work , I tried to go back several times and I just couldnt physical handle it . One thing I am not a 100 % sure is , if you can work while waiting for the disability to kick in , which it makes sense that you wouldnt beable too .... Good luck ! and I hope you feel better !!!

[LeslieP367]

Thank you all for your kind words and support. As to the last reply, I work because I have no choice. Everyday that I work I am in absolute agony. I cannot stop working or none of our bills will get paid. I do not want to end up in debt, so I have to try to deal with this pain until I can get another job that does not include lifting or moving around a lot. This was in no way meant to sound defensive, I am actually greatfull for the responses from everyone. If this sounds defensive in anyway I apologize, that was not my intent.

Just because i am still working doesn't mean that I am not in agony. If i knew that I would get some financial support if I did quit my job then I would be more than happy to take some time off to recover somewhat.

I think that I will however see how much vacation time I have left and usesome of that so that I may just stay at home and not do anything.

Thank you all

[Mrs. Peel]

I didn't notice any defensiveness. Besides, we all know how crazy things are for you right now. You just go ahead and sound any way you want, darlin'.

You are not the first, nor will you be the last (unfortunately) who's been forced to continue working at job that hurts their bladders. There are people here going through the same thing. I'm sure they'd be glad to show their support.

Lots of love and best of luck to you, Leslie.

[LeslieP367]

thank you so much and the best to all of you too!