Ability to lift 20lbs = loss of disability, Crohn's irrelevant

Hi all,
For those that don't know me or my story, I've had Crohn's disease for 39 years. Symptoms at the age of 7, not diagnosed until an appendectomy, which revealed having Crohn's disease at the age of 13. There was nothing wrong with my appendix btw.
As a child I spent up to 2 weeks at a time in the hospital just for tests, this happened many times. Seen a Psychiatrist as it was believed it could have been a mental issue, the Psychiatrist said I was a normal child.

At 7 years old I knew I needed an outlet from the pain and studied martial arts. By the time I had been 15, working out, lifting weights were incorporated, cardio such as jogging, bike ridding, Etc. I have also been working since the age of 15. Attended Vocational school early in the AM, once finished there, off to high school, then work after school.
Joined the military until I had a flare up, section 8, medical discharge.

I've seen and been in that very dark, painful side of Crohn's for 22 years until my first lower bowel resection. That had been 16 years ago and my Crohn's has returned, which forced me to disability through my employer's provided insurance. For those that don't know what that means, you fall under a law called ERISA (Employee Retirement Income Security Act).
To see why this is a bad law, please read this link-
www.avvo.com/legal-guides/ugc/what-is-erisa-and-how-does-it-affect-my-long-term-disability-insurance-claim

I saw my PCP and he had indicated my cholesterol had been way out of sorts, gave me a prescription for Crestor. It may have been by the 2nd evening (I honestly don't remember) of taking it that I went to an ER. Extreme bloating, painful bloating, relentless gas, diarrhea and an inability to control my bowels. My commute to work had been 3 hours of driving, 9 hour work day, 50 to 60 people on the floor with a men's room with two stalls. Before the Crestor issue and essentially causing a flare up, I had numerous close calls, post flare up, I couldn't make it to the bathroom at home.
I seen a GI, the usual, Prednisone (60mg blast to start), Pentasa, Welchol and after a year, no real changes with the urgency, bloating (distended stomach), pain and gas. My cholesterol eventually had been corrected, due to meds and continued exercising but blood work revealed I didn't pool B12. I was running on empty for who knows how long, I require bi-weekly shots for B12.

The GI wanted to bypass Humira and go directly with Remicade after a colonoscopy revealed inflammation and ulceration. I wasn't comfortable with taking TNF blocker as I'm a chronic sufferer of sinus infections. I notified the GI of this and he still pushed for me to receive infusions while I was suffering from such as severe sinus infection, puss was coming out my tear ducts. I saw my PCP for it, an ENT and an Ophthalmologist. Over the course of a month I took 10 different meds to get over the sinus infection.
My attorney informed me the GI said he advised me to take 6MP, which he never did, at least verbally to me.
So both 6MP and Remicade while suffering a massive sinus infection, thanks but no thanks.

Having Crohn's for 39 years, conservatively speaking, I'd say at least 10 years exposure to Prednisone. My spine is destroyed. (MRI results showed disc desiccation, more significant at L-4, L5 and L5-S1. At L1-L2, L2-L3 and L3-L4, facet hypertrophy. At L4-L5, there is diffuse disc bulge with bilateral inferior foraminal narrowing, asymmetric to the left. Also impingement of the left L4 nerve root and small annular tear. Mild facet hypertrophy. At L5-S1, asymmetric right-sided bulge/herniation extending towards the neuroforamen. Probable impingement of the right S1 nerve root within the canal).
I have worked out over 20 years, which has included lots of stretching and core exercises. I knew what Prednisone was capable of doing and still suffered from the exposure.

I received disability for nearly 2 years, never lost employment with my company, I was considered on leave of absence. The insurance company had one their representatives call me to offer retraining and an offer to call my employer to check my status of employment. Which I originally said no.
Then I agreed to consider retraining if it were to be online classes. At the point of consideration, I didn't know if there was a cost involved yet but it didn't stop the insurance company representative from calling my manager. He advised the representative I didn't have a position to return to.
The very next month I lost my disability claim, terminated as a nurse I never met or spoke with deemed I could lift 20 pounds and it meant I could do sedentary work. The insurance company noted that I do core exercises and they're strenuous.
Which is subjective, if you have never worked out, depending upon which core exercises you're doing, they could be. Core exercises can be done with one's body, an exercise ball, which is what I used and again, working out for over 20 years, they sure weren't strenuous for me to do.

I lost a very good job because I couldn't sit in bumper to bumper traffic, I pleaded to work remotely but unfortunately, my manager wouldn't allow me to. I did try to explain just a bit of what was going on, what Crohn's is like and provided a link for him to read. Doubtful he ever read it.

I have appealed the termination of my disability claim, which falls under that federal law, ERISA. It has been 6 months without income. It has taken me 4 months to receive general assistance, yes, 4 months.
I have received Medicaid which after calling 18 GI's, I haven't found one that accepts it. I've lost the insurance on my car, so I have no means to get around, to anywhere.
My GI refused me appointments, medication refills, B12 shots, Etc. because I had a balance I hadn't been aware of. A balance that went back to 2011 of $151. I encountered numerous issues with the staff, couldn't keep track of PCP referrals. So the balance wasn't a shock to me, no more appointments, no med refills and so on, did surprise me.

An ERISA appeal typically lasts 6 months, in the words of my attorney, "Once the appeal is submitted the ins. co. has 45 days to make a decision but under ERISA may ask for an additional 45 if they notify us."

I can only feel so extremely frustrated, infuriated......
The insurance company has brought up depression because I occasionally took Alprazolam (Xanax) for anxiety/stress. I some times take .25 to .50 per day, they've even brought up suicide.
This goes back to many posts I've seen, the posts of, "they just don't understand unless they have Crohn's."

I feel penalized for working 30 years, exercising, being "well developed," dieting rather than feeling sorry for myself, rolling up into a ball, using drugs, whatever.
It doesn't matter the pain I go through with my back, numbness, chronic fatigue, unbelievable urgency (to the point I cannot make it to the bathroom at home), anal leakage, relentless gas, distended stomach/bloating that is painful in itself, Crohn's pain but guess what? A nurse I never spoke with, never met says I can lift 20 pounds and this means I can do sedentary work.

So yes, this is a post of they just don't understand and venting to people who do understand.
Now it gives one an idea of what can happen if you have Crohn's disease, the invisible disease, the disease people don't speak about and get your insurance through your employer.

I wish I had made a post sooner for me to show the link to my attorney, she said she likes to hear it "from the horse's mouth." I explained to my attorney that not even a GI understands where we're at, how we're feeling until we explain it to them. I'm speaking beyond the inflammation, ulcerations and strictures.
I wish there was a sticky compiled over the years for everyone to post their experience with Crohn's and how it effects them.
"They don't understand." I could send my attorney links like this all day.
www.healingwell.com/community/default.aspx?f=17&m=2593105
www.healingwell.com/community/default.aspx?f=17&m=2565476

Though our commonality is Crohn's disease, even then, we all are still different in tolerances to meds, foods, Etc. I will be sending this link to my attorney, even where I'm at with the appeal and all that's on the line, I still haven't told her everything that effects me, daily. It's very difficult for me to do, having been quiet about my Crohn's for so long. With the things I have opened up about, very often it still feels empty or that I can't completely explain it.

Post Edited (Datawraith) : 12/27/2012 4:48:03 PM (GMT-7)

Hi Ides,

The insurance carrier hired a 3rd party vendor (from what I was told, the cheapest bid) that forces you to apply for SSDI or you lose your disability benefits from the insurance carrier. Yes, I was advised to do this or lose my benefits. It is an offset of payments for the insurance company if you happen to get SSDI.
The vendor doesn't fight for you, just sign papers and you cannot hire an attorney at this point.
I was denied, appeal time is 18 months. The firm I have for the ERISA case is also handling this case.

Long Term Disability Insurance Carriers Faulted for Forcing Claimants to Apply for SSDI
www.ssdanswers.com/2008/04/02/long-term-disability-insurance-carriers-faulted-for-forcing-claimants-to-apply-for-ssdi

Insurers Faulted as Overloading Social Security-
www.nytimes.com/2008/04/01/business/01disabled.html

Insurance is big business and all about profit.

I was certainly very moved by your post. I wish I had some advice for you, but just want to offer my support. Do you have any idea of what you're going to do next?

I really hope that things start to go your way very soon. I have an old friend who used to say "what a difference a year makes". With a new year upon us, I hope it's a much better one for you.

I really don't know what to say. I think the most important thing to address is the crohns. The disabilty and the other stuff is secondary.

You mentioned you had a resection at one point and you were good. You can't have another one now?

I'll tell you a story. At my remicade infusion place there this young bus driver. He has crohn's and a pouch. He has a bad case of crohns, but ever since he removed his colon and has remicade regularly he can drive the bus, play hockey, do what he likes. This is what he told me.

If you "fix" your crohns. one way or another, you probably be able to get back the job you lost and do what you liked again.

I'm just throwing thoughts in the wind here

To Datawraith: My story is similar to yours, first started on short term disability from work, then long term disability, after about a year my long term disability insurance told me I have to apply for SSDI via 3d party company or risk loosing long term. But, in my case, that 3d party company DID very good by me – they filed all the forms, collected all the documents from all of my docs – and I was seen by a LOT of doctors and on a first application I was granted SSDI. In my opinion, what really made the difference for me in getting approved for SSDI is that all my doctors were on board and agreed and supported via long paper trail that I am disable. Find a doctor that will back you up and contact that 3d party company again, or look for an experienced SSDI attorney.

When I went for my initial interview at the law firm that represents me, the attorney advised me that in many cases, physicians simply check off boxes rather than take the time to properly fill out these forms.
For example, the GI stated he listened to my abdominal area and there weren't any abnormal sounds. In two years of seeing this GI, it would be a miracle for him to know since in those two years, he never touched my abdominal area.
I reminded the GI on each visit how imperative it was for him to fill out the paper work being sent from the insurance company, that is was my income. 60% of one's base salary but nevertheless, it's your income when on disability.

I didn't have any real problems receiving my monthly benefits besides the issue of, "we didn't receive the forms back from the doctor's office." I call the doctor's office, "we faxed over the forms." This was the norm every month to every other month.
It wasn't until the insurance company representative called my manager, heard exactly what they wanted to hear, that I didn't have a job any longer and at that point, my claim was immediately terminated.
When I spoke with my manager about my position, he continually stated it up was up to HR if I could come back. HR turned around and said it totally up to my manager. When he spoke to me, I don't think he had the courage to say to me that I no longer had a position to return to. The insurance representative gave him an easy out and he took it.

exit 4 (thank you for the response btw), I understand what you're saying and I did have four doctors I had been seeing for numerous issues and I explained my situation to each and everyone of them. None of them had a problem with me being on disability. What they all sent to the 3rd party or what the 3rd party gathered, to this day, I still don't know.
There was minimal interaction, I spoke with the 3rd party a total of four times. Signed papers for them to receive paper work from the doctors and that was it.
Right now I do have the attorney part covered for SSDI but no means to see any doctors. The only way for me to do so, is to go to an ER.

Hi scifigal, sorry I haven't been in touch, I'm not very good company and haven't been for a while.
It is rough, the insurance companies know this and it's an additional reason people's claim are terminated. It's extremely difficult to manage, having to endure nine months with pretty much, nothing.
I hope you're doing well and big hugs to you.

Thank you for understanding Scifigal. :)
I'm old school, I am very used to keeping to myself about Crohn's. Being diagnosed before Al Gore invented the Interwebz, I had no one who could possibly understand or talk to about it.
Oh how I don't miss the days of tubes inserted here and there in me. Best was always a tube down the nose, then it being removed, "don't sneeze!" Yeah, sureeeee.

What do you mean it's the job of the insurance company to deny my claim (ill or disabled people's claims)?

They should be honoring their end of the contract rather than seeking any means to deny or terminate a claim. That is why we pay these premiums for insurance or our employers do in this case, so that we are covered in times of an illness or disability. I've been paying into systems and insurance for 30 years.

In the end, it comes down to money, this is the world we live in and I get that. The insurance companies with terminating a claim, wait the sick or disabled people out. Nine months of no income, being ill, many people are forced to work while being ill. Nine months is the total time it can take for an ERISA appeal.

I have also been on the side of working while extremely ill with Crohn's and then being a patient at my place of employment. An 18 day stay and a lower bowel resection. Unfortunately and my manager apologized about this, he formally had written me up twice while I had been very ill. After my recovery and return to work, one minute late of clocking in at the time clock, meant my termination by that employer with a third write up.

I wish you the best Crohn'snme, I do hope you receive what you deserve. Then are able to treat your ailments and feel much better.
You're right, it is easier to receive disability if you're depressed but no surprise, it's gauged by dollar signs. If someone gets disability due to a mental issue, they receive less in disability payments.

Hand in there.  I hope it works out.  I agree the insurance companies are part of the problem.  I have been out on STD from my company three times in the last 3 1/2 years, ranging from 2 months on the first to 5 months on the last.  what irks me is the Dr writes the note of why I am out, how long i will be out, how many times i will be seen while out, fills out all the paper work and then the insurance company approve the claim for 2 weeks-meaning the Dr has to do all the paper work over-like things changed that fast.  she wrote me out for 5 months!!! 

 

mirowpl said...
Hand in there. I hope it works out. I agree the insurance companies are part of the problem. I have been out on STD from my company three times in the last 3 1/2 years, ranging from 2 months on the first to 5 months on the last. what irks me is the Dr writes the note of why I am out, how long i will be out, how many times i will be seen while out, fills out all the paper work and then the insurance company approve the claim for 2 weeks-meaning the Dr has to do all the paper work over-like things changed that fast. she wrote me out for 5 months!!!

Thank you mirowpl, I am doing my best to hang in there, don't have much of a choice at this point too.
I believe the insurance companies intentionally attempt to inconvenience physicians, the physicians get frustrated filing the paperwork time and time again. The insurance companies looking for any means of denying or terminating a claim. Just about every month to every other month while out on disability, very often there would be issues of not receiving faxed paperwork. Insurance company saying they didn't receive the paperwork, the GIs office saying that they indeed faxed the paperwork.