How to find the energy and motivation for endless bureaucracy?

[Gingergrrl]

I am usually asking you guys how you cope with guilt, jealousy and other feelings but now am curious how you deal with finding the energy and motivation for literally endless paperwork and bureaucracy?

I am dealing with bureaucracy from my employer, private disability company, soon-to-be social security application and finding a disability attorney, insurance company and Covered CA (Obama Care health exchange office), trying to get a new medication (Valcyte) and soon-to-be applying to Genentech to get financial assistance/approval of this medication. And this is just the bureaucracy related to my medical and disability issues, not to mention other issues like that we just found mold in our condo (rental) for the second time and the last time they remediated it, I had to move out for a month during the process.

There are times if it were just me and I were alone, I would give up b/c I don't have it in me to go through the constant battle with all of these issues while feeling so sick. I asked my husband tonight if I still bring more positive to his life than negative and he said yes so this is the one thing that motivates me to move forward and push through all of this stuff. That and in the end when my long term disability is approved and if the new medication (Valcyte) helps me get better than it will have been worth it. But in the interim, there are moments when I feel like I just don't have the strength to do it .

I know everyone has gone through this stuff, and there is nothing special or unique about what I am asking, but would love any support or feedback!

 

[taniaaust1]

how you deal with finding the energy and motivation for literally endless paperwork and bureaucracy?

Good question, its not something Ive worked out how to yet. From my experience the more one has to deal with this kind of stuff, the less capable one becomes of doing so. I only have to think about it nowdays and its like energy starts to drain out. I nowdays avoid so much paperwork due to this as I literally cant cope with it.

My focus can only be on one thing like this at a time and I have to leave all the rest. I only have the health to focus on one dept or one problem at a time....

My current focus has had to be solely now put on preparing for a pretrial court hearing due to ME/CFS discrimination.. so many letters Ive got to get together and find etc,its overwhelming.

Since Ive had this illness, as long as Im capable of doing so (there has been periods where Ive just been bedbound long time so I couldnt do a thing), there hasnt been a time in which I havent been able to get a break from having to basically fight a dept over this illness...

I'm possibly going to have to go throu court stuff for the next year (if the disability services dont get their way and get my discrimination case against them thrown out of court) then next I'll probably be hit with a disability pension review. I was told it would be due to be reviewed 2 years ago but that didnt happen (guess I could say Im getting lucky so far there).

 

[Kati]

i think we just go through the motion. It is stressful, it is daunting, but it has to be done. It's just another step. First time arounds can be tougher, but you get used to it. Sort of.

 

[Gingergrrl]

My focus can only be on one thing like this at a time and I have to leave all the rest.

That is very good feedback and I try to tell myself that I just need to choose one thing and give it my full attention and focus and try to forget all the other things. In general I am a pretty organized person but the physical limitations are daunting b/c I can no longer lift up a stack of folders or do what I would consider pretty basic tasks which impedes my ability to move forward.

I also get very frustrated with people who say they will call me back or just don't do what they promise and then I am in limbo on very important things like switching from short to long-term disability. I also find it very difficult to deal with the disability company when I get someone on the phone who makes me feel like I am not really sick and should be working as if they are questioning my integrity. They have no idea how much I loved my career and that I would work for free for the rest of my life if I could trade it for being well again.

i think we just go through the motion. It is stressful, it is daunting, but it has to be done. It's just another step. First time arounds can be tougher, but you get used to it. Sort of.

Thank you and I guess this all gets easier with time or you just compartmentalize it and not let it upset you?

 

[taniaaust1]

I also get very frustrated with people who say they will call me back or just don't do what they promise

That's one of my biggest frustrations as it seems to happen to me almost constantly and I dont have the health to keep ringing and get on peoples backs.

For example.. Friday.. i needed urgently to sort out several things to do with my home support. I rang and got told the person I had to speak too was at lunch (sighs, that happened to me other day when I rang too). Im told she'd ring me as soon she gets back.

2hrs later no phone call, so I ring for the third time that day. Told that time, she's on phone to another so she'll ring back once she's finished dealing with other person. I wait and wait (staying out of bed as if I head to bed I could fall asleep and miss phone). No call back, I ring again as Im worried now she may of left or be about to leave. Only to be told "she's gone for the day".

That sucked as I was trying to get permission for my support worker who was at my house (I rang before she even arrived) to take me down to the local doctors clinic to sort out a mess they've made with my paperwork and another specialist wanting some letters and then sending wrong ones. So I need to go throu the file and get them to fax the letters the other is after seeing they seem to be confused (my doctor has left that clinic).

So that got left along with an appointment I was trying to give notice about as if I dont give enough notice I end up missing my appointments and now it cant be sorted out till Monday. (I should of put that in my journal as I always forget the phone calls Ive tried to make). This issue with phones keeps happening!

I really hate phones nowdays to the point I wish they werent invented. So much effort goes into trying to get hold of people I need to get hold of but cant. They are another thing the more you have to deal with, the worst it goes.... I wish I was like Kati and got used to this stuff!!

 

[Gingergrrl]

Thanks, Tania, and in case my venting about this issue is upsetting for you in any way, please don't feel obligated to read or respond to this thread! I appreciate your help but don't want to upset you in the process.

I think part of my frustration is that I am getting so impatient b/c I see possible solutions for things but they take me so long to execute- both because I am so ill and b/c I am at the mercy of other people who do not follow through. I also know from working on the other side of things (never for an insurance or disability company!) but as a social worker, that I know how I treated people with respect and how I followed through with things so I hold people to a very high standard and keep getting disappointed. I need to lower my expectations of other people and also of my own ability- that my body literally cannot do what I did even one year ago but it is really difficult.

 

[Kati]

Thank you and I guess this all gets easier with time or you just compartmentalize it and not let it upset you?

i can speak about long term disability because I have been through it. It can get nasty with our disease, since they can claim it is poorly defined and that treatments are CBT and GET. They will try everything not to pay you. Do make sure you have good documentation of disability. Make sure your primary dr is documenting for legal purposes as well, amd that he/she is convinced you are unable to work. Be ready to be denied the first time. Be ready to be surveiled. Document through a personal journal your symptoms, activities and consequences of your activities. It could get useful one day in court. i hope it won't happen to you but it happens to folks with our disease. Remember you have paid into a policy and you are sick, therefore, they need to cover you. Do not give more information than what the insurance company is asking you to give them.

Once they approve you (and they will, no doubt about that), it gets a bit easier.

Re: Gen. Foundation, no big deal. It's a piece of cake.

 

[Gingergrrl]

Thanks, Kati, and sadly I am not even close to that point yet. I am in a weird situation where I have still not been medically separated by my employer even though it is approaching the one year mark (at the end of Feb) when I went on medical leave. I am being paid by a private disability plan that I purchased through my employer and was forced to apply for a second plan through my retirement plan. Next I am forced to apply for social security (haven't started this process yet) and in the end if I win, I will be paid the exact same amount of money as now but through three different sources vs. one source like now.

I have officially been cut off from the short term disability plan and in limbo while they decide if they approve me for the long term plan (the private company.) My understanding is that b/c I purchased and paid for this plan twice a month for 12 years of paychecks AND I have valid notes from three doctors saying that I am too ill to work, that they have to pay me. But they give you so much grief in the interim that it is really stressful. At this point, it has nothing to do with my diagnosis (and I have different ones from my cardio, endo, and ME/CFS specialist that are all true and myself and any of my doctors would swear to them on a bible in court if needed.)

 

[SickOfSickness]

I am also about so much!

With something like that, I try and break it down into small tasks, and do a little bit every few days.

Then I usually have to do a mad rush before the deadline, and rest for a couple days.

 

[Gingergrrl]

@Kati Did you mean that applying to Genentech for Valcyte is a piece of cake? If so, that is great news and this has been worrying me.

 

[Kati]

Yes @Gingergrrl no big deal.

 

[Gingergrrl]

@Kati when you have a chance, can you post in my Valcyte thread what your experience with it was like (only if you are comfortable of course or send me a PM?) I don't want to take this thread off track but want to hear as many Valcyte experiences as possible. Thanks!

 

[ahimsa]

I am usually asking you guys how you cope with guilt, jealousy and other feelings but now am curious how you deal with finding the energy and motivation for literally endless paperwork and bureaucracy?

I know you asked about bureaucracy *in general* but I'm going to focus just on the long term disability (LTD) insurance.

In my case, I was motivated to fight the insurance company to show them that they could not get away with treating patients like me as if we were dirt. I also thought (probably foolishly, in hindsight) that if I won then maybe it would be a little bit easier for the next person who had to fight for an LTD claim under the ERISA laws (which are horrible).

[Side note to anyone with an ERISA LTD claim who is reading this -- get a lawyer before they turn you down. There are legal reasons for needing to get as much evidence as possible (medical tests, letters from doctors, letters from co-workers/family/friends, etc.) into your claim file before they deny you]

Another thing which helped me was having a detached attitude. After talking with my lawyer a few times, and reading stories online, I realize that the LTD fight had nothing to do with me personally.

To the LTD insurance company I was not a real person. I was simply a large number of $$ in a spreadsheet. It was not that they did not believe me and my doctors, or that they did not understand my diagnosis, or that they needed more evidence of my disability. They cared about profit, and what they could get away with legally, not whether my claim was valid. That's it.

I think I read a quote somewhere about "not letting someone live in your head rent-free." The point is that being angry with them, or feeling hurt that they don't believe you, etc., won't hurt them at all. But it can sap your energy. This was an important lesson for me.

I hope some of this is helpful! Sending hugs!

PS. Also, pace yourself. That's true about everything but these things that are emotional are even harder!

 

[ahimsa]

I thought I should add one more point. I got my social security disability on the very first try. No problems at all. I fought for 2 1/2 years against the LTD insurance company before I won my claim.

This was the opposite of what I expected back when I first filed for disablity. I thought to myself, "Well, SSA does not know me from Adam. Surely I'll have to work hard to prove my case to them. But I have been working for the same employer for 18 years (10 years after first getting sick, with many medial leaves, trying so hard to keep my job). So my employer will easily approve my LTD claim."

And it is true that my fellow employees believed me and supported me. My boss and one close co-worker even signed affidavits to support my LTD claim. They were 100% on my side because they had seen me trying to keep working.

But what I did not realize is that I was not actually getting LTD disability from my employer. Approval of my LTD claim had to come from the insurance company. And they have all these procedures in place set up to deny LTD claims. They want to do whatever is legally possible. My lawyer explained that many LTD ERISA claims are won or lost on procedural points of law, nothing to do with the evidence.

Social security may be bad but it is generally not as hard to get as LTD insurance if the claim is covered by ERISA laws. At least, that's what my lawyer said, and that's what I have read/heard from fellow patients in the USA (and not just ME/CFS patients).

 

[*GG*]

I know you asked about bureaucracy *in general* but I'm going to focus just on the long term disability (LTD) insurance.

In my case, I was motivated to fight the insurance company to show them that they could not get away with treating patients like me as if we were dirt. I also thought (probably foolishly, in hindsight) that if I won then maybe it would be a little bit easier for the next person who had to fight for an LTD claim under the ERISA laws (which are horrible).

[Side note to anyone with an ERISA LTD claim who is reading this -- get a lawyer before they turn you down. There are legal reasons for needing to get as much evidence as possible (medical tests, letters from doctors, letters from co-workers/family/friends, etc.) into your claim file before they deny you]

Another thing which helped me was having a detached attitude. After talking with my lawyer a few times, and reading stories online, I realize that the LTD fight had nothing to do with me personally.

To the LTD insurance company I was not a real person. I was simply a large number of $$ in a spreadsheet. It was not that they did not believe me and my doctors, or that they did not understand my diagnosis, or that they needed more evidence of my disability. They cared about profit, and what they could get away with legally, not whether my claim was valid. That's it.

I think I read a quote somewhere about "not letting someone live in your head rent-free." The point is that being angry with them won't hurt them at all. But it can sap your energy. This was an important lesson for me.

@ahimsa

I hope some of this is helpful! Sending hugs!

PS. Also, pace yourself. That's true about everything but these things that are emotional are even harder!

Did you happen to have the 2 day in a row exercise testing done in CA or NY or ?

GG

PS If you can comment, are you now on LTD?

 

[ahimsa]

Did you happen to have the 2 day in a row exercise testing done in CA or NY or ?

I filed for disability in late 2000. (hard to believe it has been almost 15 years) Those tests weren't done back then.

PS If you can comment, are you now on LTD?

It's a bit long (and off topic) so I'll send you a private message.

 

[Kati]

I know you asked about bureaucracy *in general* but I'm going to focus just on the long term disability (LTD) insurance.

In my case, I was motivated to fight the insurance company to show them that they could not get away with treating patients like me as if we were dirt. I also thought (probably foolishly, in hindsight) that if I won then maybe it would be a little bit easier for the next person who had to fight for an LTD claim under the ERISA laws (which are horrible).

[Side note to anyone with an ERISA LTD claim who is reading this -- get a lawyer before they turn you down. There are legal reasons for needing to get as much evidence as possible (medical tests, letters from doctors, letters from co-workers/family/friends, etc.) into your claim file before they deny you]

Another thing which helped me was having a detached attitude. After talking with my lawyer a few times, and reading stories online, I realize that the LTD fight had nothing to do with me personally.

To the LTD insurance company I was not a real person. I was simply a large number of $$ in a spreadsheet. It was not that they did not believe me and my doctors, or that they did not understand my diagnosis, or that they needed more evidence of my disability. They cared about profit, and what they could get away with legally, not whether my claim was valid. That's it.

I think I read a quote somewhere about "not letting someone live in your head rent-free." The point is that being angry with them, or feeling hurt that they don't believe you, etc., won't hurt them at all. But it can sap your energy. This was an important lesson for me.

I hope some of this is helpful! Sending hugs!

PS. Also, pace yourself. That's true about everything but these things that are emotional are even harder!

Well said @ahimsa I couldn't have said it better.