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07-01-2008, 11:03 PM   #1
BWS1982
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Feel like snappin? "What could have been"

[edited out for personal reasons, to summarize: Disability has been a major pain the ass and are continuing to give me problems all over, currently I'm fighting with an appeal]

Someone needs to die.

Anyways, other than that debacle, I recently also have been upset by the fact that I'm still living at my parents place, I've done the math and I'd have moved out long ago (financial math). My brother 1 year ago got a decent teaching job, moved out, and has a large chunk of debt eliminated from college. He as well is probably getting married to his long time gf next year. Those four life-stage steps are ones I should have been able to accomplish by now and was close to, as money's the only deterent for a proposal in the near future for my gf and I (of almost 4 years). He's my younger brother, and I'm 26 now; this disease has crippled my life and I've taken steps backwards not forwards. I am extremely happy for him, especially if he's looking at marriage, but it's a bitter cold reminder of how decrepit and shattered my life is....I could have done so much by now if Crohns never entered my life (not like you guys can't relate).

I was training to become a cop or a firefighter too (that's why in my Crohns poem I mention wanting to save lives), and now my gf's younger sister started a degree in criminal justice. I have all these pics of Arnold Schwarzeneggar from bodybuilding for motivation, a gym membership I put on hold, unused (temporarily) bodybuilding supplements (legal), and even progress shots when I had lots of muscle all over the place to remind me that I can get it back, only sometimes it's simply depressing, reminding me AGAIN what could have been!

Everywhere I look, grim reminders of "what could have been", meanwhile I'm stuck here in my room, which doesn't smell too good, constantly on the phone with nurses, disability representatives, doctors, admins, etc.... trying to explain to half of them why the other half hasn't relayed the severity of my condition properly.

@*&%@*#$%*&@$#*@#!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!

(I can sense cyber hugs pending)
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-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

"Chuck Norris can kill two stones with one bird."

"Men with Spartan lives, simple in their creature comforts, if only to allow for the complexity of their passions." -The X-Files, S4

Last edited by BWS1982; 07-02-2008 at 07:57 PM.
07-01-2008, 11:13 PM   #2
Jeff D.
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Hugs man

Man that's terrible. Hopefully soon this whole thing gets straightened out and you can get on disability. It's terrible what a sentence can do to one person's life.

You're in my prayers

Best of luck
07-01-2008, 11:43 PM   #3
BWS1982
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Thanks Jeff, it's just everything at once man, my parents are being supportive for virtually the first time in my life (in some sense, they still increased my rent I pay them to $300/mo which is a lot when you're not working). My parents are rarely supportive, and the other day my mom saw how distraught I was and how big of a mess this is and it ISN'T my fault (much of my life in their eyes is my own mess), and she said "Hang in there kido", it meant a lot because how rare that is.
07-01-2008, 11:43 PM   #4
Isla
 
Makes me wanna cry (ya I am overly emotional, get over it.) I can't even imagine what you must feel like even though you explained it very well. I know it is horrible fighting for what you deserve but please know that your perseverance will be worth it in the end. Just think all the shit >pun intended< you have gone through will have helped you move out of your parents house, become more committed to your girlfriend, and help give you the time and motivation to work on your body. It will be worth it, it's just totally awful to have to drudge through it.

This IS taking years out of your life that you could have been doing something else, but at the same time without this you wouldn't be who you are today. I wish there was more I could do to help... and seriously, I think I live like an hour or so away from you so if you need something holler at me!
07-01-2008, 11:51 PM   #5
soupdragon69
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Awww Benson this just isnt on at all!

I am fighting at the minute with housing bods and also with my uni because I just couldnt physically submit my last assignment. They want written proof from my GP because at the time I literally couldnt type hardly never mind a 3,000 word assignment or concentrate I have been so exhausted so yes I totally understand where you are coming from.

I told the Rheums reg I had watched my health slide during my 20's and 30's and I will be 40 next March and I am damned if I will lose them too! Despite everything I managed to complete my nurse training in the late 90's and now have a job I never dreamed possible working with folk who have had heart and lung transplants because I never thought I had the brains for it never mind the physical stamina. Yes most days I end up in bed when off but I love what I do.

My gastro cons reminded me yesterday how he "knows" what I do as he came to see a patient of mine and scoped them a few weeks back and told me I must not over do it etc etc and that stress was a big factor.

Its all very well saying that and yes we have to take it into account BUT at the end of the day WE HAVE TO LIVE OUR OWN LIVES!! I understand totally how you feel about the firefighting aspect as it is something you have to WANT to do and is part of our genetic makeup in some respects to be able to cope with that kind of role.

Benson trust me when I say despite the ruddy beurocrats and despite the crohns you WILL get there in the end. It can be an uphill battle every single day but you will make it!! Keep fighting and keep kicking ass until you get the help and answers YOU want. Remember we are with you every single struggling step of the way.

On the mum front mine has either had it, got it from you, or getting it from you and all much much worse than you so you can imagine the support I get there! Its why I live over 500miles from my parents as I would end up supporting them and hiding my own health issues to my own detriment which is one of the reasons it took me so long to get sorted. My brother for years kept throwing it in my face that I was becoming just like her if I said I wasnt well so thats another reason I hid what was wrong on all fronts. Now he cant cope with the fact I have major health issues and never asks how I am but I make a point of telling my sister-in-law from time to time so they both know how much I have to fight some days. Its why I am so independant now and find it very hard to turn to others for support because there has never been anyone for me when the chips are down. Your girlfriend is a very special person and so are you Benson. Dont ever give up, lean on us and on her and let us help ok? Dont bottle it up and hide it from those who CAN help you.

And you were right here come the hugs! ((((((hugs))))))
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IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.

Last edited by soupdragon69; 07-02-2008 at 12:13 AM.
07-02-2008, 12:10 AM   #6
BWS1982
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Thanks Isla and Jan, it means a lot.

I'm eager to look back at this in a different world.
07-02-2008, 12:20 AM   #7
soupdragon69
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You will honey you will. Just dont take it out on you and let it be to your detriment. Thats how to fight back!

Take each day as it comes. You KNOW Benson what you are capable of so allow your body the time it needs to pick up again once you have the right treatment.

I used to hurdle, sprint 4x100 and swim distance and butterfly. Dont have the strength to butterfly now, will never hurdle again but hey I sprint to arrests and can swim a mile now on a good day so I am getting there even if they are rare still! lol

Your different world will come Benson and so will your time. Hang in there. We will always be here remember that!
07-02-2008, 12:32 AM   #8
BWS1982
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I feel this is an even better place than any 'in-person' support group could be-not only is it 24/7 but it provides too much of a unique environment.

My mom and my girlfriends parents say that if this disability thing goes any further south I should get a lawyer, because it could cost me my job (in fact if this appeal is denied that's essentially the end of my job unless some higher ups fight for me).
07-02-2008, 12:41 AM   #9
Jeff D.
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Yeah this place is great.

I think a lawyer would probably be a good idea if this appeal doesn't go through. If your higher ups won't fight for you we will.(: I'll go put on my steel toe, one inch thick soul Tim's and put on my fighting gloves, as to keep bodily fluids from touching my hands. Then we will all be out for a night of good ol' fight club and taking craps on everyone's yards. Yeah I think that would work.(:
07-02-2008, 12:43 AM   #10
soupdragon69
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Yes I agree you could go down the lawyer route Benson but you also need to take into account the stress and the impact that would have on you. Maybe its better to have legal "advice" so you can formulate your own plan rather than persuing a course that would take more out of you and add to financial worries too?

Remember last year and earlier this year the stress I had with bringing the union in over the possibility of losing my job and my registration so finally my career ( I realised my back was against the wall and my employer would win). Are there any other options that you could take? Try and take a step back and have a think on this one. Only you know your work situation etc.

I jumped ship and went back into clinical practice as you know. My GP totally understands where I am coming from and keeps picking me up off the floor. My current boss knew me from before and her and her deputy really try to keep me at work. Yes I work 12hr days and they are exhausting, especially when I end up with a patient arresting, no time for theatre and opening their chest in the bedspace and sometimes scrubbing with the surgeon because there literally isnt time to wait for the rest of the crew. BUT I dont work nights, I dont work more than 2 in a row and if my shift pattern becomes to much we review it.

I KNOW Benson you are in no physical shape to return to work yet but there HAS to be a way round this that results in less stress for you!!! If putting it into a lawyers hands is the answer as in someone else helps you to fight then do it. If there is another option bite the bullet and do it no matter how hard. Things will work out in the long run.

In the meantime take the route of least stress but more likely to bring you decent results. I know its easier said than done but dont forget YOU get to rebuild your life how YOU want it to be and that part is fun!! Bit like redesigning a house to your own specs after levelling it eh?

And you are very right about this forum being better than anything else - it is unique! Great place to have as a sounding board.

Last edited by soupdragon69; 07-02-2008 at 12:47 AM.
07-02-2008, 01:57 AM   #11
BWS1982
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Heh, I like the leveling house analogy. Only this one was leveled by an enigmatic disease that fights dirty (and smelly).

I do know that I was given a number a week or so ago, for a department that's called "Employee Relations" and the idea from the sound of it is that it's almost like a union in that they'll "stick up for you"....It would remain to be seen just how much sticking up they'd do when the fight bell dings, though.
07-02-2008, 02:03 AM   #12
soupdragon69
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Yeah that might well be the case but they can give you objective info and support you where they can. Just like the union did for me even though I didnt like the answers! Having said that the union also prevented my boss from taking me down a "formal" route as she wanted to and forced her to take the "informal" route first as they hadnt given me appropriate info from the go.

My GP and gastro cons were both up in arms along with my Occ health cons at the time but what it boiled down to for me at the time was I was in a "lone post" and no else could do my job. The ironic thing was when I did leave they advertised and wanted TWO to replace me. Sorta says the workload I was carrying eh? Made me feel tons better too! I laughed too when they only got ONE person for the post AND my old boss keeps asking me to meet with the new bod to support them settling into the job. Hilarious or what!

Thing is Benson sometimes we are our own worst enemy because we see it as OUR battle and forget others may help just with some ideas like the "employee relations" guys you mention.

Have a ponder and see what you come up with. The more info you have the better.

Just dont keep fighting it on your own. We are here and there is more help out there than you maybe realise or are willing to let in. Sometimes we feel its down to us and yes it can be but get as much as you can around you to help. It will ease the strain if you "chip" away at it rather than take on a giant you are not physically ready for yet. For me returning to clinical practice was a dream come true but I wasnt sure I could cope and maintain it physically. So far I have managed and love being back and long may it continue.

Last edited by soupdragon69; 07-02-2008 at 02:17 AM.
07-02-2008, 02:13 AM   #13
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Good perspective Jan, I have to find a balance I guess, fight for 'me', but not so much I take more steps backwards.

I guess what concerns me the most about possibly losing my job is not just the income, but even more so my insurance. I know there's a public system in some nations but here I'd be worrying about "pre-existing conditions"....I've heard the government is trying to dismantle that some though, because it's highly unfair. You enter with a new insurance company and anything you're diagnosed with prior to your new "friends" is off the table as far as coverage...meaning Crohns related expenses would be a no go.

....though there is "COBRA" coverage, but it's expensive I've heard.
07-02-2008, 02:23 AM   #14
soupdragon69
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Yes that is right Benson but balance is different for each and every one of us and only you can decide what works for you. Some folk think I am crazy doing what I do workwise with my health problems and working 12hr shifts but I physically find it easier than working 5x8hr days. Once I am in work I can generally pace myself and the days I am in charge - yes its for 8/9 cardiac ITU beds (one of 3 teams running) but I have more control over my day in some respects. So it is very much swings and roundabouts.

I can see your issues with insurance being a huge concern Benson and I truly dont know how you guys cope over there! Take my hat off to you all every single time on that score.

Know this though. There is ALWAYS another option. Sometimes they are temporary stepping stones to longer term goals and its important to remember that.

Arm yourself with the info YOU need, stop beating yourself over the head and stop kicking your body Benson for the things it cant do right now. Sounds tough and easier said than done but your body is fighting hard for you. Least you can do is help it honey.

You will get there I know you will!

((hugs))
07-02-2008, 02:29 AM   #15
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My body may be fighting for me, but my immune system has performed an act of mutany!

Thanks Jan, I am tired and need to get to bed, I have a day of pivotal phone calls ahead tomorrow, the errors need to be cleared up before it's too late.
07-02-2008, 02:38 AM   #16
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As I said hang in there Benson. I know the feeling oh so well. Thinking of you.

Sleep well and I hope you get things sorted a bit more tomorrow. Keep in touch.
07-02-2008, 03:18 AM   #17
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aw Benson, yes you have a massive cyber hug from me, and i got real tears in my eyes reading your posts just now. purely because you worded so well the massive frustration this disease and its limits causes us, & i feel what you're going through. sometimes logging in here & reading others' posts, is like looking in the mirror and seeing our own thoughts set in type..

what can i say in addition to what's been said already? just hang on in there, something will change for the better for you, and that first step forward i am sure will be the beginning of your regaining control.

i am usually terrible at taking my own advice, but have learned to in one respect. i often go on about relaxation - this has become a lifeline for me. just taking time out for me, to consciously relax my mind & body, let all the stress/anger/sadness lift up & away from me, even if just for half an hour a day, does wonders. right now, that is the only immediate-effect thing i can advise you - try it, if you're not doing already. and the more planning (like scented candles, soft music) you can apply to your relaxation times, the better. make it special, just for you.

& keep on unloading & leaning on us here - we all have a common bond, & we're here for you.
07-02-2008, 08:01 AM   #18
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I would say be really careful with a lawyer. You don't want to spend way more than yo have, or more than it's worth in fees.
So......... what else can you do? Sounds like you feel like you're at rock bottom - but that's not helping your health. Remicade is "the big guns" according to my GI doctor, so what else can you do??
No one wants surgery, but maybe that's your last resort. Methotrexate sucks I hear, but maybe you need to try it. Maybe you can try that prednisone alternative (entocort? or something like that?). What about that liquid elemental diet to give your intestines a rest? It would be hard to do, but maybe well worth the rest for your guts. LDN? There's got to be something that you haven't tried yet.
I know the work thing sucks, but you need to get your body better.

For some strange reason, I feel like bringing you a casserole.

We're here. Feel better. Good luck.
(This sounds snotty to me when I read it back. Not trying to be snotty or bossy - just trying to help by listing possibilities.)
07-02-2008, 09:29 AM   #19
Jeff D.
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Good luck to day Benson with all of your phone calls.
07-02-2008, 01:45 PM   #20
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Thanks everyone again, I woke up a little bit ago and made 3 different phone calls and really didn't get anywhere. The first I left a voicemail for the Appeals office, the second I spoke to a receptionist at one of my GI's office who could only leave a message for the doc to call me back (she said she has no authority to change the docs notes that are wrong), and the third I got voice mail but left no message because I want to speak to a live person now (I'll try later).

I have a few more pharmacuetical options before surgery, such as Cimzia, Actose, and Tysabri....as well as possibly LDN if I could acquire it. I'd try even an elemental diet before surgery. A resection or removal/stoma is one doodle that can't be undid home skillet.

As for my company (major bank), they've got a disability management services in charge of disability pay, and an RN was in charge of my case/denial, and she actually had to go to a higher up for the final denial a couple weeks ago that preceded the appeal. Well, that higher up, supposedly a doctor, was SUPPOSED to speak with my GI, which never happened she said. How could they deny me without speaking with my doc like they stated they'd have to do? Anyways, I have United Healthcare for my general coverage, and they've got nothing to do with this disability leave aspect, so it's not an issue of any insurance company.

While looking at the records used (the ones I requested for hard copies for myself) to deny me, it's becoming increasingly evident that this one page with 3 areas of false information sealed that fate. 1: the sentence about solid BM's and 5 BM's/day 2: medications listed still includes Asacol, which I've been off for 6 months almost now as well as a couple other errors (they see Asacol and might think mild Crohns) 3: the section entitled "Plan:" indicates to continue a pred taper as scheduled, and lists nothing about me not responding to Remicade or anything else. Simply stating continue pred taper sounds like I'm doing fine and things are under control.

I'll keep this thread posted, thanks again guys.
07-02-2008, 01:52 PM   #21
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Pen said:
Hey Benson, with your constant diahreah, I was thinking, have you considered trying Cholestyramine (Questran) I was on it after my surgery and it cut my D considerably and no accidents! Check it out, it could be for you and cant cost any more than the price of Depends??? Not sure ,what do you think?
That sounds like it'd be a miracle if it'd work for me, I'll ask about it. Thanks Pen. I've tried Loperamide (Imodium), Lomotil (Lonox), and Bentyl, and not really noticed much difference. I hate spending money on Depends and especially hate buying them, despite the fact that I'm guessing nobody suspects they're for me.
07-02-2008, 02:37 PM   #22
soupdragon69
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Benson, keep us posted. Thats what we are here for!

Thinking of you...
07-02-2008, 03:19 PM   #23
ericajones80
 
sorry to hear your troubles Benson...the sunrise always comes after the dark though. Hang in there.
07-02-2008, 04:52 PM   #24
Isla
 
>Whoa go to sleep, and have a billion messages to catch up on!<

Benson I live in Illinois and I am on Public Aid's medical card (i.e. state Medicaid insurance) due to my income level. I have all sorts of medical problems, some I was born with so very pre-existing and I have never been denied by Illinois for the insurance or denied by their doctors for any kind of treatment I wanted. I think it is fantastic insurance (except the dental - very hard to find a decent dentist willing to take public aid.)

So don't worry about that aspect if it REALLY came down to it. But sorry to say, a disability claim can hardly be won without lawyers. I have known several people trying to get disability from their companies and the only successful ones were the people with lawyers. If you can afford it, I say get one as soon as possible.

Keep us posted!
07-02-2008, 08:01 PM   #25
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Well, spoke with the doctor who apparently wrote up the page that was used in the claim. I don't want to really talk about it at the moment, but I can say he was VERY upset that I implied he had false records on file, I had a conversation with him in hopes of clarifying what was put on that date's records, but he says I said what was written there, even though for the life of me I don't recall saying those words or anything similar. Said he realizes I got worse again but those were my words back in April, and he's written a letter 2 weeks ago superceding the page I'm speaking about and I should expect a copy soon for myself. I don't know what to think but I'm upset and I'll be on here later. This is a disaster.

I also edited out the original post with the details because this is just too upsetting to me, I feel horrible like I lost a friend.

Last edited by BWS1982; 07-02-2008 at 08:03 PM.
07-02-2008, 09:22 PM   #26
Isla
 
Not to add injury to insult but you REALLY should be collecting your medical records as you go along. That way you can read over the doctors notes and be aware of what is written >spoken in a nasally voice< in your permanent record.

I urge everyone to get their records from their doctors and hospitals. You don't want to have to try to correct something from months and months ago. Your doctor has seen hundred and hundreds of people by then and all he / she has is their notes. I wait a long while before getting my primary's records because he takes impeccable notation - hospital visits and specialists is always the same week.

BUT with those things said Benson, I suspect that you may already be an emotionally rooted person. Sensitive to nuances others may ignore or not notice. I suspect it is a lot of those nuances that are sending you over the edge. One by one they are not that bad but when you add up all them together they can send people over the edge. Not to sound rude, but you sound like you are on the cusp of that edge and I wish there was something I could do to pull you away from it. All I can say -

You inspire me on what a single person can handle and deal with. Hopefully you can gather the inspiration you need for and from yourself - because I am sure people gather it from you all the time!
07-03-2008, 12:50 AM   #27
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I have 25 pages of medical records from 2006 onward, containing everything up through this spring, actually around February or March, and due to the hecticness of this all, I just never got around to getting just the last few months. I understand your insights on my nuances and although I'm in the forest and can't see the trees like others can, I actually have to agree with what you stated Isla.

I'm still really upset about my conversation and still feel like I really let a friend down, all the time I've known this doc he's been superb and despite my disagreement with what that page said, I feel like I stabbed him in the back.
07-03-2008, 01:02 AM   #28
Isla
 
And maybe he feels like you did stab him in the back or maybe he can see your point of view. How you stated it, IS what matters... i.e. how you feel about it. Guilt is a powerful tool and you can chose to stagnate in it or you can chose to use it as a catalyst. I think you are trying to use it as a catalyst but are feeling rather overwhelmed - and no one could blame you. You are entitled to swim in any feelings that come across you. Seems like you just need to vent - to really give your feelings a good boost in volume. Unload on here, in a journal, to your girlfriend, to a friend, in a dark room -

in a box, with a fox, in a house, with a mouse, here or there or anywhere,

oh wait thats all the places you eat green eggs and ham, I suppose it would work for getting out your emotions too!

Chin up hun - we are all here for you!
07-05-2008, 07:52 PM   #29
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Thanks. I'm waiting for a copy of the "ultimate" letter that was sent for my appeal by my GI, he says it should supercede anything used in the initial denial....I was supposed to get a copy of this already, but never got one.

The bank and deposit analogy I like, it's true.
07-07-2008, 02:18 AM   #30
soupdragon69
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Still thinking of you Benson. Still walking each day step by step with you. Keep talking to us and keep chipping away!
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