Loss of control

I need someone to talk to - I hope you all don't mind listening:o)


My whole life feels controlled by others right now - I am in the process of waiting for a hearing from SSDI - they turned me down the first two times, so now, to the judge. The private disability insurance that I have has hit the two year mark - at two years, they re-review your case, and decide whether you merit it for another X years until you're 65. So now, on two fronts, I am trying to convince people that I am sick enough. My friends and loved ones know how bad it is, they see it all the time.


So I just got all of this paperwork from the ins co that I need to get my doctors to fill out. It is usually the medical secretaries that do it, since the doctors are so busy. I took the chance, and asked my neurologist to actually fill the form out himself, and he said "yes", bless his busy heart. So I just mailed the forms to him.


And I am feeling paralyzed with fear. All of these people carry my future in their hands. If they deny me, then we lose the house. I can't believe that we could lose the house. I can't stand this feeling!!! I am afraid that my husband's family privately feels as if I am the noose around his neck. God, I don't mean to complain, but it is just spinning around in me right now. I initially wrote this privately to one person, because I don't like to complain, but then I realized that that wasn't fair to put it all on him. So here it is, I don't know what to do. I'm spinning in the wind.

Thank you for bothering to read this. I am grateful.

Lily

i’m right there with you dear. i have no insurance, and no doctor! a husband that loves me to death and would never say ANYTHING! but i feel bad he worries about me so much! i wish i had answers for you! but sometimes its nice just to know your not alone

I know of your struggles, Lily.

Your neurologist filling out the forms should be a good thing : )

My doctors filled out mine. Though I, meaning BOB, didn’t have to…when push comes to shove…

LILY will get an Academy Award, for her performance in convincing people!!!

My humor aside; you twitch, tweak, shout, swear, laugh, cry, pee your pants…do anything and everything in your power.

Remember, dear Lily, Social Security is part of our government, we pay their salaries.

And the Best Actress in a Rare Disease or Disorder goes to…envelope, please. love, bob

Thanks Melissa, Gloria, Bob, you really helped me feel less alone- when I logged on I thought no one would answer. Bob, you are eternally my favorite buddy - you are amazing, considering all that you endure. You know you’ve always got me.
Matt,
I just started crying when I read your post. I understand so well the longing to have things return to normal. To be able to work that stressful career that I used to complain about - now the loss of it is huge. I had made my way up in a guy’s world, and was so proud of where I had gotten. I was a construction project manager, and as the condition progressed and I became more and more medicated, my work started failing. When worse came to worse and I found out I would need the MVD, I worked till 2 days before it, and was certain that I would be back to normal in 6 weeks. I would be one of the lucky ones, and it would fix me. Many complications later and another 1-1/2 brain surgeries, and I am still broken. OK, so be it - I can deal - I always do.

anyway, yeah, the loss of the career was SO HARD to get my head around. I figured out just how type A I was when I got sick - the idea of stopping, of not pushing through pain, or resting and doing nothing are so %$%&ing foreign to me. But I am learning.
I’ve got a binder of records as well, and I am dumbfounded that they have turned me down. My next door neighbor has SSDI. he has cancer. It is in complete remisssion and he is out doing everything he wants. ,enjoying the lovely days. I am fighting tooth and nail for it, and am stuck in my house trying to deal with incessant pain, losing day after day of my life. I mean, I would never want cancer, and it is horrible, and I so feel bad that that is his course. But he gets to thrive a bit in between, lucky him. It doesn’t seem fair all the same. WE paid for SSDI by working all of our lives - you’re right! Damn them for denying us.
OK… geeze, I HATE looking at the denial letters, they incense me so much to read them - I will abrieviate to shorten: first denial: U said that U are unable to work because of TN, and Trigeminal Neuropathic pain. The medical evidence shows that u have TN and assoc nerve pain. While this condition does limit your function, it does not prevent all work activity. You are able to freq lift 10 lbs; Stand and walk bout 2 hrs in a normal 8 hr work day, and sit for about 6 hrs in a mormal work day. U should never climb ( ladders ropes) but may climb (ramps), balance, stoop, kneel, crouch and crawl frequently. U should avoid moderate exposure to extrm heat, cold, fumes and avoid expos to hazards (machinery, heights) We also evaluated your mental health. Tho u may be anxious or depressed at times, your records show that you are able to think, communicate, and act in your own interest. (then some more about being able to act like a human), and then we realize that you can’t do your past work, but your condition does not preclude you from all work activities… further down it says…U must meet certain rules for SSDI, you’re required to have the required work credits and your health problem must keep you from doing any kind of substantial work, nd last, or be expected to last, for at least 12 months in a row, or result in death
The appeal denial says We have determined that your medical condition is not severe enuf to keep you from working. We considered the med and other info, your age, educ, training and work exper in determining how your condition affects your ability to work. You said that you are unable to work becuase of TN, Hydrocephalus, Vision. We reviewed your claim to see if our decision that you are not disabled was correct. In addition to the evidence already contained in your file, addt’l reports were considerd. After reviewing all of the information carefully, we again find that your condition does not preclude you from performing all work activities. All though you may not be able to perform your past work, based on yr age, education, blah blah blah. Again, the statements …You must meet certain rules for SSDI, you are required to have the required work credits and your health problem must: keep you from doing any kind of substantial work, and last, or be expected to last, for at least 12 months in a row, or result in death

So again, apparently, if I swallow enough magic pixie dust (which I am still waiting to receive from them), I should be fine. No problem. I used to get migrianes pretty regularly. I mean diagnosed, vasodilating, real migraines. Not headaches. And I would work through those until I dropped. Those shifts I only stayed 8 hours. The rest were 10, 12 hours long. I was TOUGH. But jeeze, how can they say these things - how can they hide behind an official letter. I want them to come and say it to my face. On a bad day. Which would be most of them, really. WE DO NOT GET BRAIN SURGERY TO TREAT “HEADACHES”. Oh my god - every doctor I meet reacts like one should…they feel genuinely bad for you. Becuase they have learned about TN. On the flip side, I made a comment to an aunt in law, saying that TN is worse than migraines - she said “REALLY?”. No. I get brain surgery for the fun of it. OH, and one day, she and my mother in law saw me trying to deal quietly with a bad pain day (i didn’t say it was, I was just sitting quietly in an armchair, waiting for them to leave), and they thought that I was on the nod from too many drugs.
Sorry, Matt, you opened that door. And now all my frustration is coming out. And I am hurting today, and that doesn’t help. In fact, it is really past time to go lie down. I hope that you never have to read those words from SSDI, it really hurts to get those letters. I hear that they always turn you down if you are in your 40s or younger. But that is just heresay, I hope. And as a woman, there is always the assumption that we are being frail. Or overreacting. Ughh.
I am going to go lie down. Thanks Matt, Bob, Gloria, Melissa - I need to get that stuff off my chest every once and a while. I am a good natured person, but this is just too much.
Love and peace to all here,
Lily

Lily, first thing’s first, if I can ask a stupid question, but are you our Lily from BT?
And secondly what an absolute nightmare you have going on.I feel a rant brewing but I don’t want to offend so I will control my outbursts as best I can but the language appropriate for this would make any sailor I know blush, and having worked as a barmaid in a fishing port that’s no small feat let me tell you.

I can not believe that this is the report you’ve had, or what in Gods name they expect you to do for that matter!

Okay from a practicality point of view, and please don’t think I’m trying to rule out things you could consider if YOU ever felt in a position to be able to return to work, my point here is about their arguement, not about our needs or desires to be employed.

So you can walk around for 2 hours a day, and sit for 6, what type of employement would enable that? The only thing I can think of is shop work, sitting at a till, but where are the tills? Beside the doors, for the 2 hours not on the tills, in most shops you would be stacking shelves, often shifting boxes heavier than you are able to do, in addition to that, in any store I’ve worked in if you are stacking shelves, you have to climb steps to retrieve and replenish stock.

The other problem with shop work which you will find is the same problem as office work is that you will have to speak to people constantly, then there’s the fact that when there aren’t breezes coming in from the doors the air con is on constantly, which is not something a non neuralgian would ever consider, but something that can be crippling for us.

Oh there is office work, maybe a nice data entry position? Air con again, attention to detail for inputting information is not easy when you have vision problems and brain fog from the meds.

Over and above this due to your medical difficulties wouldn’t a lot of employers ( depending on the role obviously) be unable to cover you due to your condition due to health and safety?

I know you’ll have been through all of these things before, and I saw Sarah point out somewhere that disability is often declined the first couple of times you apply, but that’s not the point, the down right injustice of it is the point.

But surely to God these people realise what is involved with this, well obviously they don’t, get any one of these pen pushers to google TN and come up with Suicide disease, the most painful affliction known to medicine, and see if they change their tune then, B*$**ds.

I mean really, brain surgery? Of course it was elective, it wasn’t a last resort to save your sanity, because there is only so much pain only one person can deal with. It was just cause you wanted to have someone guddling around inside your noggin for giggles, you wanted padding and wires in there and you fancied a nice few weeks off work, Sheesh it wasn’t as if you had a tummy tuck and bl**dy boob job cause you’re off on your hols in the summer cuising for a nice young buck!!!
I’m not meaning to be disrespectful, or flippant about this, I’m not at all, I’m just horrified.

I reckon you should send them a list of the criteria that you can do as per their letter and list the things you can’t including the practicalities they’ve neglected to mention and challenge them to find you selection of suitable roles and employers within your area who would be able to insure you and make the necessary arrangements.
I bet they couldn’t do it.

Hopefully your neuro will be able to make the difference for you, the other thing I would suggest is maybe getting in touch with your MP, or is it senators that are the equivalent state side and see what they can do about it, In the name of creation there has to be something that they can do?!?

I’m so sorry to hear that you’re in this position, I wish that there was something I could say or do, but words just aren’t enough. Please just know that you are in my thoughts and prayers

Gracie x x x

Oh Gracie, nice to see you. Yes, same Lily. You are so sweet, and you always make me laugh. Damn, I am crying again today - guess it’s just gonna be one of those days. And of course the crying makes my simuses swell, which adds to the pain. Ughhh. I’ll pull out of it, though. Just a temporary slide into self pity.
God, I wish I could do all of the things that they say - then yes - of course - I WOULD work. But the hell of the matter is, I can’t - I am down with pain SO MUCH…
I want to ask these people - would you hire me to take care of and watch your children, on megadoses of meds and opiates? Would you hire me to drive you around? Would you hire me to watch your house, with all the drugs that I take, or stand guard over $1M of your money and jewels? Would you hire me to make financial decisions for you, or to make complex calculations with a head full of knives? Or even driving a forklift…
I cannot keep a schedule because when the pain comes I am down. Not by choice. If I try to “push through it” I end up in the ER. I drove half way to an appointment this morning. I had to turn back around and get home so that I could get the meds in ahead of the monster. And after I take them, I can’t drive.
God I hate this. I think that I need to get out of “anger” and “depression” and back INTO “denial” and “bargaining” where I tend to be happier. And maybe even “acceptance” again, where I can count my blessings, of which there are many.
Sorry for the drama. I just have to spew it all out every once in a while. It helps to maintain sanity.
Thanks.

Lily, it’s awful, I can only imagine your predicament, I am lucky in the respect that for now I can work, my employers are happy to make certain allowances for me like later start times etc, for now… how long they can sustain me however may change. Training up in a new job is a terrifying prospect in itself, when I started where I am now, everyday for months I was a sobbing wreck, I was in so much pain, doped to the eyeballs, and went from being top of my game in my previous job, to being in truth a poor example of a performing monkey, somehow I got through it though, ( a miracle in instelf) and thankfully with stopping a lot of the extra meds things got less foggy, and the atypical pain lifted for me,( how’s that for irony) so I can function to a reasonable level for the moment, although things seem to be getting tougher of late.

I can not imagine however what would happen if I weren’t able to, Disibility is so so strict here too, with criteria, like limited mobility, and requiring help dressing and help around the home and stuff, so I believe that to get it for neuralgia is very very difficult so much of it is things that aren’t really relevant, but the things that are don’t appear to be taken into account.

Crying has to happen hun, it’s all down to the moon, :beware the sobbing man myfriend when the moon is fat," or words to that effect ;o)

It pulls the tides, and it makes us weepy, I don’t doubt it for a second that we are all affected someway some how, I don’t care how much people dispute it, the moon affects us all. And on a side note we have a blue moon this month as my random fact for the day.

Anyway you are so right, the grief cycle is something we have to go through though, and I reckon folk think I’m melodramatic when I mention it, but it’s a very very real part of this disease, and it’s unavoidable, I liked your coin of “phrase spinning in the wind”, round here things aren’t quite as eloquently put .

We can all find a time to count our blessings, and they are many, there are always those worse off, and things that come and put our worries into perspective for a while, it doesn’t make our worries any less real, or make them affect us any less.

The things that affect us directly that affect our lives, who we are day to day, these things that have changed us to our very core, and changed our outlook can’t be ignored, and much as I wish it wasn’t, neuralgia is very much a part of who I am, it affects me, socially, proffessionally, in my marriage, my my fertility, there seems to be no part of my life that is unaffected, and I am saying that as someone who’s never been through the trauma of all the surgeries etc, you have been much more severely affected by this beast.

What I am trying to say in my clumsy cheeky way is that you are entitled to be pi$$ed off, what would be worrying was if you weren’t.
There aren’t many people who understand this just how far reaching the implications of this beast are, and even if you can’t take it to your relatives( or at least your inlaws) you can take it to your spazzy family.

So please feel free to vent as much as you need, and Bob and I will be free to try and make you smile ( but only a little, we don’t want to set you zapping)

Much love to you as always.

Gracie x x x x

Hello Lily,
I have TN and was just searching the internet for a support group and I found this one and your comment! I am going through the EXACT same things, starting from fighting for my $$ from my former employer’s insurance company (not at the 2-year ssdi horror yet) for the past 2 1/2 months without pay. I am in constant pain, with daggers being shoved through my ear (I had right parotid cancer surgery 12/08 which resulted in TN), sometimes the daggers turn into a relentless drill, but the pain level is never below a 5-6 on the pain scale. I, too, am a nervous wreck thinking this insurance company handling my long-term disability could deny me when I and my family know I am completely incapable of working. I just wanted to write back that you are NOT alone. Hang in there. Peace to you.

Dear Gloria,
There is an association, TNA or FPA, for folks with facial pain. They have a discussion board as well, and there is a thread about this, the disability issue. At least one person on that thread has won disability. He posted the name of the law group, and well as the attorney that handled his case. I contracted with them prior to the first rejection, because the SSDI folks were sending questionaires that I did not want to incriminate myself on. I am now at the trial stage, but luckily I will have the same attorney that this man had, to argue my case.
I am dumbfounded that they will grant it to fibromyalgia and not to TN! Not to say that fibro isn’t bad - I’ve seen it take down more than one friend - but TN is way up there also in terms of its disabling effects. Jeez, I just can’t find the sense in this! I know a guy with a pinched nerve in his neck - it’s bad, and he had his disc replaced, but they granted it at the FIRST STAGE for him, way before his disc replacement. That’s a nerve problem. This is a nerve problem. Where is the crazy line that these people draw in the sand, to differentiate between his nerve and mine?
Gloria, I’m so glad to read that you had the SSDI - thank god for that - but I am so sorry that you ended up in this miserable club. not that we are miserable, but this condition sure is :o)
You make me think that talking to my elected official is a good idea. I think of them as so busy, but they are, after all, paid by us to represent us. Thanks for that idea. What great luck to know yours personally. Will try to talk to mine.
Andrea, I’m so glad that you found us! I truly hope that you find a home here too, it is so awesome to have this kind of conversation, and can bond over our shared difficulties. This stuff is truly “crazymaking” ( a term that is used to describe irrational alcoholic behavior and reasoning) ! I am glad that you are here, and hope we can find the time to talk about good stuff too.
Hugs. We need em.
Lily

You’ve done all the right things, Lily. When I was at the same stage in the process as you are in right now, the BEST thing I did was … purchase a GOOD copy machine/printer! As nice as it is to have our doctors fill out some of the paperwork, and keep it on file, it is, after all, OUR medical files! They belong to US, the patient. What gets sent, and what gets placed in what order, that’s up to US.

Good documentation PLUS support from a Disability Attorney as well as cooperation from our treating physician is what wins cases. Since pain itself is not a criteria for receiving a full disability award, you need to show a constellation of symptoms and level of impairment that will merit the level they consider to be that of disabling. Whether we HAVE this level of impairment or not is mostly ascertained by: Good Record Keeping, Support from a Medical Doctor, and a well-put-together case by a Qualified Disability Attorney.

While it is true, that we do turn these things over into other peoples’ hands, these things actually begin in OUR HANDS as the patient. I wish you well. (jqt)

Well, some hopefully more positive news - I called my private disability insurance to be certain that I was supplying all the info that they were requesting, and asked to put a message through to my disability analyst. For a bit of backstory, my disability analyst was very cold, she would not give me her extension so I would always have to communicate by voicemail, and I felt like I was talking to someone that was either eternally jaded or eternally depressed. A few months ago, however, I was told that she was taken off of my case. I was sure then, that with a new person, they would not have my history and would fail me straight out.
Anyway, she called back within 5 minutes (!?!), told me she was the new person on the case, and that she just happened to be working on my case right then. She asked me a few questions, and then said that she had researched my condition, and that it sounds so awful to have. She told me that both my neurologist AND my neurosurgeon had completed the forms personnally, and she said that she has all the info that she needs. First off, my neurosurgeon, oh my gosh! He filled it out personally! Without me asking! So they have two physicians statements from my docs now. And, get this! The insurance company will make their decision within the next few weeks, so that I don’t have to wait till January!
I am now officially terrified, but the analyst seemed genuinely nice, and sympathetic (YAY!). Oh please, please, let them decide positively for me. Just this once. This has been such a hard road.
And John, what you say below is SO right. It’s all about the documentation. I sit and write down the conversations right after I have them, and I have 2 notebooks full. Thanks for your thoughts.
Lily

I am so thankful you wrote this. I found myself balling today from dealing with disability. Broke, completely confused and in severe pain. The “mourning” phase is hitting me, since its now been 5 months. They approved me in July for disability, I went back to work in September and had to stop working in November. Now, they say they are denying this new claim. Same condition. Nothing makes sense. If I has worked less than 30 days in-between, they would have just continued my old case. Going back to work and trying to function on this actually hurt my disability claim. Clearly, I couldn’t function on the meds or pain, thats why I stopped after trying. Clearly, I want and need to work. Being 30 with TN- no income, no social activites. I’m scared. I cried to the disability manager today- ‘Its not like I want this to be happening.’ I feel like I’m being tossed around in a cement mixer. Its nice to vent and see I’m not alone.

Does anyone have a financial/ insurance/ disability success story?

Well, I cannot give you a complete success story on the financial/disability/insurance side, since I am in the exact same boat. My insurance company is saying that since I had constant nausea and vomiting from TN and worked for a year with it, and now that I am medicated (180 mg. morphine, 60 mg oxycodone, among nausea meds and injectible compazine to stop the vomiting) there is no reason for me not to be able to work!!!!!!! I was and still am astounded. I was an executive secretary that could no longer do shorthand because I couldn't think fast enough anymore-just for starters. I haven't been paid since August and the financial stress is getting very serious; serious relationship bummer.

On the brighter side of things, my CalPers (a portion of my disability retirement, separate from my other claim) approved my Disability retirement today! Hurrah. It gave me hope and will give us a tad of money monthly.

I do hope you feel better and all works out for you.

And you're right-you're not alone!

Andrea