Long Term Disability - A Little Freaked Out...

[hholmes13]

So today I got a form in the mail from my work to fill out an application for long term disability. My short term will run out very soon and then if I'm still not working, I have to switch to the long term. My supervisor said to get it going now so that it will be ready to go if I need it. I just never envisioned that I'd still be this bad after all this time off from work. I was reading the policy from my workplace and it says you can be terminated while on long term disability. I'm definitely worried that will happen because my poor boss has been in a huge time crunch for grant submissions and it's been rough having his lab tech out. Luckily, there is someone filling in for me but I just wonder how long his patience is going to last.

I'm only 29 and never thought I'd have to worry about something like this. Long term disability would cut my pay down to 65% (which is way better than nothing for sure) but I am the primary earner in our house. This would mess us up big time. I've already been in contact with our mortgage company to discuss options in the event this happens. I want to be prepared so we can handle this. The thing is, money has been tight for awhile and this will really make it bad. I'm just stressed out and get mad at myself that I can't just "get over" this stupid illness. I've always been able to just suck it up and push through most difficulties and I get annoyed that I can't do that with POTS.

The Mestinon hasn't done too much for me yet, but I keep hoping it will help soon. (I've been on it about a month now.) I found I can work out in the water without feeling too horrible, so part of my work rehab is doing water aerobics most days of the week. I swear the worst part is getting to and from the pool. The dizziness hits me like a ton of bricks shortly after getting out. It also completely wipes me out but it feels good to at least be getting some exercise. Plus with the whole EDS thing, it's been great to do something easy on my joints. I'm still having problems with my stupid left hip subluxing, so it's nice to have something that doesn't aggrevate it too much.

Anyway...I just needed to vent. Sorry for the length! When I got that paperwork today, it just hit me that life may be in for some big scary changes soon. I know many of you here are in similar situations. I am thankful for our supportive families though. I know they'll help us in any way they can and that is a source of comfort for sure. Thanks for reading if you made it this far. You all are great!

[corina]

HHolmes, don't worry about the length of your post, I know how you're feeling. When I received those papers years ago I got so mad I threw them in the dustbin thinking it was SO not me. Fortunately my hubby got them out and kept them in a safe place without me knowing I had a great job which was perfect to combine with raising our kids, I had great collegues and a disease I thought I could overcome. In the end it turned out that I couldn't overcome and couldn't work either so I was happy my husband kept the papers. I'm on disability for years now and come to terms with it, or so I think . .. . . . I'm thankful for the (little) money I can call my own and use it mostly on my hubby or our kids which makes me happy.

Loosing your job is a big deal and it takes time to get over that. But you can keep hope, as I do. You just never know. Meanwhile I called myself the manager of our household, I am in charge of our family agenda and am always here when my kids and husband need a listening ear. I've found out I'm still important!

Sending warm thoughts your way!

[Relax86]

POTS is a very disabling illness. I'm sure it feels surreal to have to entertain LTD. That's why those policies are in place and our symptoms pretty much take over every system in our body. I did have to walk away from a job in Feb - I didn't love that position but POTS forced me to have to resign. Once I was able to work I found something else and I'm at peace. I don't have the option to worry or waste emotion on feeling like that job loss was a failure. I was able to improve my symptoms and find work when the time is right. Take care of you. The rest will fall into place. I don't blame myself for my POTS but we are all very driven people. The long term disability is the time you'll take to find some solution for you and your body. Good luck.

[Dizzysillyak]

I completely understand your feelings and I hate hearing that you're going thru this. Hugs ...

I'm now 56 but I've been on disability since I was 34. I had a great job with great co-workers

too.

Please don't take this the wrong way as I'm only trying to help .. But I see you're trying meds and pt, I respect that as I tried that too, but IF I could go back the first thing I'd do is change

my diet to a paleo / wahls diet. Then I'd go see an integrative / functional doctor who would look at possible root causes.

There's a chance that changing my diet alone back when I first got sick would've helped me regain my health

like most gluten sensitive people do.

However, it looks like not addressing this has complicated my illness to

the point of no return. Not that I'm complaining or whining, I'm just trying to make my point. In my opinion, more than likely, further damage will occur if you don't look for the root cause. These can be gluten sensitivity, Lyme, candida, nutritional deficiciecies, hormone imbalances, bacteria, parasites, heavy metals, etc ..

Tc .. D

Edited July 19, 2012 by MomtoGiuliana
medical advice

[Zap]

I know exactly how you're feeling - I'm in the same boat at the moment, except that my small company didn't have LTD, so I was lucky to have lots of savings. Not to freak you out, but I'm actually in the midst of appeal at the disability company, as the first line of claims didn't seem to understand anything about my claim. Since you have short term, and have been receiving it, that will likely help you quite a bit as grounds for long term.

I'm also the primary earner, and 29 too. It is scary to think that life has changed so much in such a short time. In some ways, I can still do some of the things I used to, but just on a much slower and more inconsistent scale. That said, it is probably time to recognize that I've hit some limitations, too.

I've always been a fighter - and I'm not used to this inability to suck it up and push on. It almost seems surreal. Looking back, I'm glad that we started our own business a while back, as a side thing. It may end up being an answer for how I can continue to do something of value in spite of my erratic schedule.

Best of luck to you, and remember, it could always be even worse!

[Crow]

I know what you're going through. I was at the top of my profession, graduate degrees etc.

Make sure as you go through the LTD process that you know what is in all of your medical records and that all your Drs know that you are in the process of applying/getting approved.

It's an overwhelming process, to be sure, but it is necessary for your future.

Honestly, I used the application process to help get through the grieving process for my former life. I got really anal with it and got my frustrations out that way. Felt like I was accomplishing something again.

xoxo

[ddschool]

I understand also. I've been out of work 2 yrs now on LTD since I got my pacemaker. I am 35 y.o., and I do feel embarrassed, but on the other hand, it is less stress on your body not having to work or worry about working. I also felt like I wasn't much use to my patients & co-workers if I couldn't function properly. I get 60% of my pay, & it is an adjustment, but like others said, it is important to take care of yourself.

[hholmes13]

Thanks for all of the support/advice everyone! The biggest worry right now is money stuff, but in the end we'll hopefully work something out. It's so nice to hear from others who have been through this.

[Stace915]

Hi all, I am 34 and have been dealing with POTS for 8 years. I was doing pretty well for years but health started declining in October. I was on Short Term Disability for 3 weeks and expected to be back to work but that ran out and my doctor still couldn't get things under control. I was waiting on an appointment with Dr. Grubb but it was canceled due to his wife's illness and passing. Since I did not see Grubb my local cardiologist was the one that submitted records for my Long Term Disability, the problem is since October I have only been seen by him once. The day I saw him my BP and HR were both "normal", but I still felt terrible, was shaking, and could barely stand up. I do call his nurse every few days and check in with her, but I found out yesterday that my claim for Long Term Disability was denied. I am waiting for the letter with more details but the rep said my medical records did not show the need for me being out of work.

I really wasn't surprised that my claim was denied, but I am still panicking! Luckily STD paid me 100% of my salary, but since that point I have missed 4 paychecks! I had money in savings to get by for the last 2 months but I was also, hoping that I would be approved and would be paid retroactively 60% of my salary.

My job is no longer protected by FMLA and when I spoke to HR about whether I needed to be concerned about losing my job, I didn't get a real answer. I was told that once I have medical clearance to return to work, they will look at the needs of my team and determine if my position is needed. If it is not, they will work with me to try and find a similar position...it sounded like he was reading from a book of how to cover his butt legally, and did not seem too promising.

So, I don't know if I will have a job when I am allowed to return to work. I am running out of money, and my LTD claim was denied. I have an appointment at Cleveland Clinic in a month, as well as an appointment with Dr. Grubb a few days after that. I am planning to appeal my LTD claim denial and was doing some research online regarding what I should include. Did anyone else appeal a LTD denial and have it approved? If so, do you have any suggestions or a version of the letter that you included with you supporting documents (doctors letters, articles, letters from family/friends etc).

Thanks!

[Stace915]

Checking in again. I spoke to a family member who is an attorney and he is going to help me put my appeal together. I have been reading articles and abstracts, does anyone have any specific info regarding what they put in their appeal for LTD (only if it was accepted of course ), or have any articles specifically talking about how symptoms can sometimes be under control/ "manageable" for years and then be exasperated?

[corina]

Hi Stace915, I don't have anything to add to your appeal, just wanted to wish you best of luck!

[Katybug]

Hi Stacie,

I didn't have to appeal, so I don't have that for you. Out of curiosity, what circumstance had disqualified you to be protected by FMLA?

I can say that my private LTD was approved from the get go. My docs documented my condition including changes in my symptoms but my primary care doc was very specific in his notes that I can not reasonably perform any sort of work either part time or full time. He updates that "line" in his office notes for every one of my follow up appointments with him which are every 3-4 months. I'm also religious about seeing each of my specialists every 4-6 months and I have been up front with them that everything needs to be documented thoroughly for purposes of SSDI and my continuing private LTD. This combination of things seems to have worked.

[gjensen]

To the OP, I wanted to comment because I can relate. I really struggled with giving my work up. I did not have a choice, so it was a matter of accepting it. I felt as if I was saying goodbye.

I was fortunate to have some savings, and the company kept me on the payroll for almost a year. Then short term, and long term disability. It bought me just enough time to get approved by SSI, which was another grieving stage. LOL.

A frustrating thing is this company would work with me, and put me in a different role. I cannot get there though. I cannot responsibly drive much of the time.

I am currently scheming what I could possibly do from home. I was the "bread winner", so I need to do something to help. Kids coming into the college age etc. There is so much that we need to do.

I wish you well on the process.

[gjensen]

Stacie, I do not have any answers. You need a doctor on board, it would seam. Even the little things add up. If you have migraines . . . that is something they look at.

Some research, and some legal assistance may be helpful.

[Stace915]

Hi Katybug, I was covered by FMLA but it only protects your job for 12 weeks and I have already been out longer than that, so I am no longer covered.

A family member who is an attorney is going to be working on the appeal with me. My local cardiologist is writing a letter for me, I am compiling articles from research journals/publications and I have an appointment coming up at Cleveland Clinic and with Dr. Grubb. I am hoping that the doc from Cleveland Clinic and Grubb will also be willing to write letters for me. I am fighting this appeal with guns blazing!