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. :angry-banghead:

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.

@*&%@*#$%*&@$#*@#!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :ymad: :ymad:

(I can sense cyber hugs pending)

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

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.

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!

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))))))

Thanks Isla and Jan, it means a lot.

I'm eager to look back at this in a different world.

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!

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).

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.

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.

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.

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.

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.

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))

My body may be fighting for me, but my immune system has performed an act of mutany! :lol:

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.

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.

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.

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.)

Good luck to day Benson with all of your phone calls.

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.

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?

Click to expand...

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.

Benson, keep us posted. Thats what we are here for!

Thinking of you...

sorry to hear your troubles Benson...the sunrise always comes after the dark though. Hang in there.

>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!

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.

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!

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.

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!

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.

Still thinking of you Benson. Still walking each day step by step with you. Keep talking to us and keep chipping away!

It's a new week, and hopefully will render new results.

Yes, in this case the new info is I got the letter that the doc sent a couple weeks ago for my appeal. It's a couple paragraphs, and in it the doc states my symptoms, my agony (that I wear depends all the time and attempt to lead the best "normal" life I can), and also that "I feel very sorry for this young man that he has such as severe illness and I think the least thing his employer can do is to continue his disability".

I applaud this letter and my doc who wrote it, despite the recent difference I had with him and that catastrophic phone call. I still feel like I've lost a friend and hope to recover my patient-doctor relationship I previously had, as I very much dislike not having him there for me (or at least feeling like I severed his alliance with me, I'd venture to guess he's "still there for me").

Thanks Crohnies (and associated relatives thereof)

I wonder if this letter will make a difference in your quest for disability... keep us updated

I hope things turn around for you Benson. I had to go through all the same BS with the disability claims only to be told by my employer when I started raising hell that the insurance company had gone above and beyond for me?! I'm sure you're doctor will be there for you. Hang in there man and in lieu of a hug I offer a manly fist bump.

A fist bump works well Drew. Thanks buddy.

Well, not a decision on the appeal, but the doc from the disability department called and wants yet MORE info on my symptoms, to be exact, he wants blood work showing the severity, I was under the impression the picture that was taken of MY COLON BLEEDING showed severity from May 9, 2008? WTH? What more do they want? They keep getting info, and saying "what else you got"? My doc and I are both fed up with this hoop jumping, can I finally begin to mend my innards?! I had my Secondary doc from Rush fax over 16 pages today, including lab work showing some markers and notations about my lack of response from Remicade, and a go for Cimzia next. He'll call me (I'm calling him, again) Monday if it's not sufficient. When does this end? I'll find a cure for Crohns before they're satisfied I'm not in working condition.

I also found out my office somehow (I have no clue how) set up the June 5 Remicade appt as just an infusion and no "office visit" with it...I've never been told any different when I set up my infusions, they look up when the doc will be there and schedule it within the infusion scheduling window, so I don't get it too soon/late...and suddenly one isn't recorded as an office visit?! HOW?! I was NEVER told any difference, as the infusion finishes up, the nurse sets up the next, and only when the doc is in there. Now they tell me it was different (insurance EOB concurs this too, no "office visit" billed)...he saw me that day, but it didn't "count" as an "office visit". I got a visit....in the office....just like the other times....but it doesn't count. :ymad:

Hell will be raised if this goes bad even more. I can promise people. :ymad:

I am guessing the lack of an office visit is somehow hindering your case?

Benson hang in there man.

But in the meantime where are the pitchforks and torches. I think it may take a crohn's forum of people to settle this. I'll give them a piece of my mind if you want. I take everything that happens to one of my peeps on here personally. This crap just pisses me off.

Anyways I got off topic there for a second. I hope you get something soon. Now I need to get off the phone and the computer and get some sleep.

Thanks Jeff, but hold on the angry mob for now. lol

Yeah Isla, this meant the most recent official office visit was April 18 (my birthday) and this was a bad one to use (don't ask, you can see the history earlier in this thread)...June 5th (and May 9th sigmoid scope) was more recent and would have had notes on how bad this is getting (that's what was discussed) and how I'm even being sent to a top doc in Chicagoland for answers/solutions. But according to records now, all that happened June 5 was an infusion, which is misleading and problematic. Luckily I now have the June 13th appt from the Rush doc to use, which hopefully will pull the weight.

Well good news today, the appeal was approved but only through this Friday, the reason being I have an appointment that day and they want all documentation and labwork etc...from this to continue to document further severity etc...So, big news, but I'll have to see how this Fridays appointment goes, I'm not really any better than the June 13th appt I had, in fact I've had numerous horrid days a couple times where BM's numbered into the 20's...I hope this goes smooth.

I'm expecting pay now too, since I've been approved for almost 5 more weeks, so I can finally do something with some $$ and continue paying debts instead of keeping it frozen in case of a lost job.

aw that is good news Benson - well done!

i hope things turn around symptom-wise as well, & good luck with the appointment.

Good news Benson hopefully .. friday going forward is good as well. I had a bitch of a time with the disability company too.

Well, I know it's odd I'm updating my war in the Support forum and not the General IBD or treatment forums where disease notations are generally found, but I've got a good progress flow in this thread......

I saw the Rush doc yesterday, and made sure to talk about the bads and omit any good so that the disability people can't twist something around if I state "well on July 6th I had a good day and felt less like sh!t than normal"...as apparently that translates to "Patient is having good days and feels less diseased than before"....I'm sick of the situation getting painted and shaded into something it's not, one positive means things are positive to these people. The nurse from disability actually asked me yesterday "so when did he say you can come back" Ummmm, how about I say nothing so I don't say something I'll regret. I said they're still playing the guessing game trying to get something to work, and until anything works, nobody's going back to any job. I just don't get it.

The GI gave me a script for Actose, and said it addresses inflammation differently than the chimeric and TNF stuff, and that he's had decent success in Crohns lately on those who didn't do as well as hoped on other stuff, namely 5ASA meds, which just seem to make my colon laugh at me.

I also am getting finalized for Cimzia, and in 5-6 weeks will get my first instruction on getting it injected, either as a home nurse will come to me, or I have to go down town Chicago to his main office, only places he can do it, but I'm afraid a home nurse visit will look like I don't have an appointment in the future, and the disability folks don't like when that happens because it doesn't give them a timeline for more updates, and they get itchy for that, and get confused and give me a hard time, thinking that means I'm "all better" because I don't have an appointment scheduled.:ymad:

Also he mentioned that because there were some signs I was responding from Remicade very mildly, but barely, that's a better case than if I had absolutely no response whatsoever when looking at Cimzia's prospects for working.

Then the final drug he's willing to try would be the Tysabri like Mike is on, after that he said a Colectomy is his next choice....great, a damn sh*t bag fanny pak hooked up, that's just what a lean and trim sexy bodybuilder at 220 lbs of six-pack, bulging bicep and massive cobra lats would look good with in a couple years when I'm better. He says there's an NFL kicker with a bag (stoma) and he plays and asks the opponents to make sure they don't go easy on him. He's trying to reassure me you could live a active normal life. I beg to differ, but that's another debate...

I asked about Rifamixan or whatever it's called, along with LDN whatnot, and he said in his opinion he wouldn't try anything else, as I'd have had everything thrown at this disease he thinks would work, and that anything else is more for milder cases. I don't know what to think though, still digesting the appoinment.

Had all notes and a recertification form directed to be filled out and faxed to the disability people so they can go ahead and recertify an extension to the 7/18 end date to keep it going.

My heartrate and BP were much better than the spring and winter (pred f*cked with my cardiac numbers badly)...114/63 BP...and a heartrate of 68 BPM....closer to my normal from when I was fit N healthy.

Thrush is decided to be gone, and my dermatologist is eager to try me on Acutane because I have some acne still, but it's much better than March before treatment began with all the lotions and creams and the Doxycycline. I don't know about that though....all this Crohns stuff is enough to go through, and the creams are holding their own right now...maybe later.

Had my first rectal exam at an appointment (had hospital ones before), the lubed finger thing....not fun when you're so worn out down there and tender....odd that I've never been propositioned before for this at any other office visit, they just did the abdominal presses and interviewed me on symptoms.

The sad thing is that this GI yesterday said he'd have no problem with me saying "I've had enough of this, I've suffered long enough, I want the colectomy"...says that he'd understand because of all the failures I've endured and how hard this is. I want to try the meds, you cant reverse a colectomy, and I'd always wonder for the rest of my life if they'd have worked if I didn't try them first. He says because so far all signs point to just the colon and rectum being involved, I'd have a good chance of being "healed" and nearly all better (except for the damn ziploc of crap that'd hang on my side for eternity) if they just removed the colon....This is a lot to digest and sort through, and the fact that I've got an army of lemmings asking why I can't work is making the sh&t hit the fan that much harder.

Yes Pen, I always attempt to recollect the worse off than I for added consolation....and even though once in a while it helps, I often have a hard time because at the end of the day, the shoes I walk in are my own, nobody elses.

Thanks though.


Reminds me of a comic or joke I once heard, maybe even here I don't know lately..."if you walk a mile in someone elses shoes, you've got new shoes and you're a mile away from the owner."

Comedy helps me so much.

Well, been approved for 6 more weeks following the July 18th or so date, I now have until Aug 31, good news again, but the catch is I need another appt and corresponding notes to provide further disability (in all honesty I hope I don't need more, and the Cimzia does it's thing), but Cimzia doesn't start till the week of Aug 11, and I have a home nurse coming to "show" me how to inject it. Well, we'll discuss symptoms, but it doesnt' count as an office appt. And I think the end of Aug is too soon to know if Cimzia will work, and even if it does, I don't think I could have like 1 or 2 or even 5 days good, and think I'm in remission just yet, I've had the rug pulled from under me during this flare several times like that during this last year of flaring. I've already started Actose this last Tues, and the reason for the lag in Cimzia commencement is GI doesn't want to start up 2 new drugs right on top of each other (I think)...but if I improve and don't know what did it, I wouldn't give 2 sh!ts what made the improvement (you're right, no more diarrhea, I'd be giving ONE sh!t instead, HA).....

Also, the doctor said something about me being the first one ever he's used Actose on who failed completely on 5ASA drugs, all others he's used it on (with decent success it sounds) were simultaneously on 5ASA still, but just not getting that great of a response, so the Actose was added. Great, I'm a guinea pig.

That's it for now on the Benson Saga....

Look at the positives of a bag though Benson. You wouldn't have to buy coffee table books. Just slap the bag on the table as a conversation starter. No need to interrupt things with the whole I gotten run to the bathroom thing either.

On the downside you do lose the whole "I gotta pinch a loaf" excuse but hey I think the positives far outweight the negatives.


:

Actose - never heard of it. And maybe the Cimzia will give you good results.
I'm not sure is a colectomy bag is the same as a colostomy bag, but my grandmother-in-law did have a reversal. She didn't have Crohn's so I don't know how much a reversal would help us, but it may just be possible.
Good luck - keep us posted on the Cimzia.

a "colectomy" is just terminology for the "removal of the colon"...like appendectomy is removal of the appendix.....it would still leave the patient with a "colostomy" bag...so in essence, a "colectomy" and a "colostomy" are essentially the same thing. I don't think there's any hope for any sort of reversal, the doctor mentioned why the solution of a colostomy bag is the last choice for him, not because it's the least effective, but (and he used this word) the 'finality' of it....meaning he wanted to allude to the permenancy of it. Who knows if it's later possible though, in the future, if science found a way for a reversal....

I think your grandmother in law had it reversed because from what I heard it's reversable (and temporary) in some patients because they still have enough colon left to form a J pouch (makeshift colon)...if I had a "colectomy" it'd be the entire colon coming out, because my history shows the entire colon inflammed, and a J pouch didn't sound possible.

Actose is closer to an experimental Crohns treatment, but it's established for hyperglacemia already (diabetes)...it's not too widely used for IBD, but this GI has had decent success from it I guess.

Thanks guys....I still would rather be on meds for the rest of my life than have a bag....so that's my first option to test.

I've been on Actose for 6 days, they say that'd take about 3 weeks to make a difference if it'll make one. Then the week of Aug 11 I've got a home nurse coming to demonstrate the Cimzia shots. If both those fail, just Tysabri is left to try from this doc. That's not to say that LDN or some antibiotic regimen wouldn't work, it's just that Tysabri would be the last resort of this GI.....the surgery would most likely involve a bag, there's no healthy colon to leave intact or make a pouch with. Sounds like I'd have one last scope done though by this GI to ensure the state of things before they slice me.

BWS1982 said:

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.

Click to expand...

Benson I was looking into the job changing thing at one time and what I found is apparently you can request a form from your current insurance company basically stating that you are or were covered and you can take this to your new employers insurance provider and by law they have to accept you based on your previous coverage. My understanding is this is a recent change to US law. At the moment I can't remember what they were calling the form but it had a distinct name. I think you should look into this in the event that you lose your job for some unfair reason.
Best wishes and good luck.

Thanks Kim, I'm hoping to end this.

Thanks Miles (if that's your first name?)...that's groundbreaking news if it's true, I'd hope that my current insurance company would know what I'm talking about if I can't find out the name of this form. I'll begin research though, that's a BIG relief.

Yay, I am glad to hear that something ANYTHING is being done to progress you in your saga of doctors, insurance companies, and annoying people in general. I hope that you do not have to have a bag - I think that is the one thing we all fear or at least want to put off for a long time to come. When I think about the possibility of having a bag - I think in the terms that is just one more thing "against" me that would make me a less desirable person for love and career.

You are lucky to have in the least one person who supports you as am I - even if it really is only one person. It is hard to remember the positives in life when there are so many negatives beating and weighing us down. Thanks for keeping this saga updated - I have a vested interest in how you do because you and the others on this forum are important to me.

Thanks Isla that means a lot, and your exacting description of the "one more thing against me" puts it into words I have yet to put it into. That is how I feel, I feel the Crohns is bad enough, but at least visibly you cannot see I have it (more like when I'm in remission, as of now I probably look worn down)...but as egotistical as it may sound, it is extremely important I don't have an external appliance confirming my ailment, even if it's usually well hidden, we all would like to look good nude (I have no clue how that's going to come across)

About the insurance, the way I experienced it is that you must have continuous coverage in order for your new job insurance to accept you. If you have a gap between jobs you must have COBRA during that time or until your new insurance takes effect. I changed jobs at the beginning of the year and had to wait 3 months before my new insurance took effect and had to have COBRA during that time. It is ridiculously expensive. Mine was almost $500 a month. With some jobs, though, your insurance takes effect on the date of hire. If there is a new law that changes all this, that would be great.

Anyway, hang in there. It's a crime that people w/chronic diseases have to worry about all this in the midst of their illness. I remember when I was in the hospital last year that was what was most on mind instead of getting better. I couldn't sleep at night worrying about my job situation, finances, etc.

You should definitely ask your doctor for some Questran. I take Humira, but I must have Questran also. I take Questran in the morning to get me through the day and then 1 immodium before I go to sleep to prevent urgency in the morning.

Sojourn, your taking of an Immodium the night before helps you through till the morning? That'd great, all my Loperamide pills last at max about 5 hours. Do you take an extra strength of some sort or what?

Thanks for the input, I get more piece of mind each time I hear other experiences in these matters.

If it helps.... I'm 22 moved away from home (different state all together), leased my own place, and got married like 2 months ago to find a few weeks later I have Crohns and had a serious flare-up sending me out of work for over a month now..... I sorta hate life at the moment, went from way up to rock bottom. Take care man and stay optimistic. I wish I was at home right now

Sorry to hear that SB286, we're all in it together. Staying optimistic can sometimes help more than what we think but it's easier said than done sometimes.

BWS, it varies depending on how much I eat, but the Questran is fairly strong so the 1 immodium usually gives me time to get a restroom in the morning. I try to void my bowels in the morning and then take the Questran. I eat maybe a couple of dry cups of cereal and some graham crackers before noon. At midday I'll have a sandwich, turkey usually. Lately I've been eating it on corn tortillas. Then I may have some rice and cheese tortilla chips in the evening.

I usually go once more during the day depending on how well I got my bowels voided in the morning before taking the Questran. And this is much less than I was eating at the beginning of the year since I've deteriorated somewhat.

Exactly one year ago today I had my first signs of a second flare. I wasn't aware of the torment and agony it would yield, but am now. Thousands in debt, and so much grief, as many of us are aware of. I know I've seen so many people talk about the devastation of the disease, and it's medicines, only to end up STILL WITH CROHNS, and a bunch of sides and owed money. I understand this is all science has as of now, though. I know I'm not the worst one off, and not the one with it easiest, but I know the demon of Crohns very intimately. I also know many have flares for years upon years long, but this is my oath to win, and my vow to victory. I will beat it, but I cannot tell you when....it's the if that isn't in question.

Happy anniversary flare up.




(my new poster in my room for inspiration)

Yes that is me, I took that pic in March, and never had the intention of showing a soul, because it's so upsetting to me. That's all moon face, I didnt' gain more than a couple pounds, whilst looking like that. My moon face has finally gone away so I resemble my current avatar or the small pic in the lower right of the poster, when I was wearing a suit. I don't have that body anymore, I lost it mostly from the 40 pounds or so lost between about October through December, when I ended up looking like that "weightloss" picture, weighing about 150 lbs (@ 5'11"). That is partly why I state "I will reclaim what is mine". I created the poster for myself for motivation to push through, to show me what I can have again, the bliss of having control over yourself. One of my friends who's a female strongwoman and weightlifter wanted me to model a few years ago, could that guy in the top left model? I wanted to show the night and day that the medicines and Crohns can do to a person, the decimation of appearance, because as we all are, I'm sick of people saying I don't look unhealthy, or that my moonface made me look "fuller" again. That thick black stripe of a bar vertically seperating the two left shots from the rest is to just make sure that it divides the 2 ideas. I saw Skinzdogg post his moonface shot and thought of my poster I made, and decided it'd help to show what the disease is capable of on the outside, because so many times we see shots of ulcerated innards etc...

Thanks Kim, the best thing a person close to a Crohnie can do at times, is to know the horrors of the disease, and be aware. Mike's lucky.

It can be so emotional what it does to your body. I am tired of everyone trying to loose weight while I struggle to stay at 95lbs. I wish I could get over 100, but it seems impossible!

Pen-I too hid for a while from friends and family. I was so thin I was embarassed to go out in public. I felt like everyone was staring at me all the time thinking I was an anorexic....honestly because if I saw someone looking like me I would have thought the same thing.

Benson-I love the poster you made. It is a great representation of what it can do to the body. You are right we usually only see the damage it does on the inside. It is just a shame that it has to be so drastic on the outside for people to even understand a tiny bit what we go through. I don't think anyone at my job really gets the pain I am in. They keep saying "cramping like if you have gas...I hate gas pains" I try to explain to them that it is more painful than any gas pain I have ever had, but I think they just can't understand...they still think "tummy ache." Frustrating isn't it?

Very frustrating. I too, struggle to be a higher weight, but not because I am at an unhealthy weight as of now, more of a preference. What gets me irritated is when they try to ask me for my "normal weight" when trying to gauge my condition at appointments or whatnot. I don't have a "normal weight" per se, so just tell them I have a spectrum of 60 pounds that has been traversed since diagnosed, and I keep bouncing around it. Thanks.

Is your constant weight loss more from the disease than a higher metabolism? Hyperthyroid at all, or all Crohns?

No thyroid issues. I had a fast metabolism when I was in high school (10 years ago) and then when I was about 22 it slowed way down and I had gained like 30lbs. In January of this year I began loosing weight. At first I thought it was just stress but then when I kept loosing weight and then started having terrible cramping that is when I finally broke down and went to the doctor. At that point I could lose almost 10lbs in a week. I honestly was avoiding food because I felt better when I didn't eat until I was so thin I was tired all the time. So, anyway I think it is all Crohn's at this point.

Really hard to just gain more weight which frustrates me. I would love to put on 10lbs but just can't. I am eating 3 times a day and drinking 3 350 calorie ensure shakes a day and still not really getting anywhere! Seems what really kills me is that I flare every couple of weeks for a few days and that always sets my weight back again.

I just really don't want to buy a whole new wardrobe! I really liked how my body looked when I was heavier. I have lost my boobs and butt! It totally sucks!!!!

I refuse to buy a new wardrobe, even when I cut down before, I didn't get this low or "straight", and still filled out my pants with a butt from heavy squats and working out, and a V taper torso from the rest, now I have little to no butt anymore, and I hate it. I have "girl arms" for the most part, which is humiliating, most shirts I end up "swimming in" because they're more fit for the bigger me. I almost feel like if I spend more money on new clothes then I'm accepting that Crohns will make me this way, and it "wins". I spend enough money on it already.

Have you spoken to a nutritionist or had your basal metabolic rate tested, to see what your maintenence level is?

BWS1982 said:

I almost feel like if I spend more money on new clothes then I'm accepting that Crohns will make me this way, and it "wins". I spend enough money on it already.

Have you spoken to a nutritionist or had your basal metabolic rate tested, to see what your maintenence level is?

Click to expand...

I totally feel the same way...I just can't accept that this is the size I will be forever.

I haven't talked to a nutritionist or had my metabolic rate tested. How do they test that? What would a nutritionist be able to do? Are there foods that could help me put on weight?

Hey Benson,
Very cool picture collage. I deleted all my moon face pictures because they disgusted me. I did find a pic of me before I started pred and really got some good treatment. I was down to 155 at the time.

And hope I'm not hijacking the thread.

Oh, now YOU'RE flirting Pen??
Isla's celibate = I win.
Actually, I already broke up with Drew, remember?

Now back to the topic. The time that I needed to gain weight, I was on pred and got a milkshake every day after work. Sometimes I got fries and mozzarella sticks too. For breakfast I had a carnation instant breakfast drink and added 1/4 cup of flavored creamer to it. I did gain weight quickly, though not a healthy way. It came on flabby in different places than I lost it.

Ya she broke up with him (smooth move butt groove!)

Drew vs. chocolate = chocolate wins!!

I'm currently eating my way through this:



Mmmmm...

o0o0 he took a picture of it on his desk.. I see wires and cds - they look like games or software... chocolate geekiness!

Swoon


:mademyday: Hahahahaha

Isla said:

o0o0 he took a picture of it on his desk.. I see wires and cds - they look like games or software... chocolate geekiness!

Swoon


:mademyday: Hahahahaha

Click to expand...

If you look reaaaally close, you can see a Windows NT Workstation boot disk sticking out of the floppy drive...

Pen said:

Calm down now Isla I think he is married? LOL...but then again he could a she cause you mentioned his last avatar looked like a bra LOL

Click to expand...

Married?!? Where did you get that idea? :tongue:

Hahaha married or not - I swoon for geeks

Geeks & Chocolate

There's several ways that a BMR, basal metabolic rate, can be tested, Teeny5....but most are just estimates. One way on your own is 10 times your bodyweight, I've heard this before, but it's very approximate. Remember though theres something called TCB, Total Calorie Burn, which is realistically how many calories you burn with not only your BMR, but also your activities and all added in too. BMR is just the basic necessities your body engages in, keeping your homeostasis active, heart beating, repairing cells/tisue, breathing, digesting..etc... but your TCB will have that, plus your sitting, running, walking, chores, exercise, etc...and is more accurate. Here's one article on it, sort of....

http://healthlink.mcw.edu/article/1031002604.html

Your BMR can be tested by trial and error too, and playing a guessing game, and seeing and noting results. Most nutritionists will test it via calcuations, as there's not really a blood test you can do for it. It will depend on age, gender, activity level, etc... They COULD help you gain weight subsequent to finding out this approx. #, by instructing you to eat accordingly, after figuring out the estimate(s).

Being anabolic (in a state of repair from damaged/micro-torn muscles) will make one often gain most weight in muscle when they eat excess cals, if you just eat 500 extra a day for a week, you'll put on a pound (3500 cals= lb), but depending on "you", that weight can vary, between muscle and fat. That's why you'll hear of fitness enthusiasts/athletes eating thousands of cals a day (I read once about a year or two ago that Michael Phelps eats nearly 10,000 a day when training just to maintain his weight, because he's burning through so many)...Bodybuilders will eat lots of excess calories but add mostly muscle if done right, because of the anabolic state the body is in with hormones etc...Rockclimbers for example, can easily burn 5000+ cals in a day from hours of strenuous climbing and exertions. Like you though, a situation where weight is borderline unhealthily low, you want to just go for lots of healthy food. Healthy fats will add up quick in calories, and be beneficial to your health (nuts and fish and healthy oils). Anyways, I'm kinda being overzealous with the info here....

Drew, I at first thought that object in your picture was the silencer end of a rifle, then realized it's a camera tripod and arm.

I find no problem with digression of topic, it's only natural and keeps things lively.

PS: Thanks for the support guys, I'd have deleted that moonface shot, but I kept it for proof of destruction, because words won't do to describe it. I don't know about anyone else here, but I've even got 2 stool photos filed away, for reference of what BM's looked like.

You amaze me Benson with all your knowledge! Thanks for the info!

Looks like I need about 1700 calories a day to maintain...if I have a moderately active day...which isn't every day so if I do the lower one with sedentary lifestyle it is closer to 1500 calories. Surprising it is so low. Makes me think I am really just not eating enough if 1000 of my calories are liquid already!

My Butt Hurts said:

Drew vs. chocolate = chocolate wins!!

Click to expand...

But but but .. :depressed:

teeny5 said:

Looks like I need about 1700 calories a day to maintain...if I have a moderately active day...which isn't every day so if I do the lower one with sedentary lifestyle it is closer to 1500 calories. Surprising it is so low. Makes me think I am really just not eating enough if 1000 of my calories are liquid already!

Click to expand...

Yes, sometimes I ramble about the health/nutrition stuff, so if nothing is germane to your needs, forgive me.

Anyways, I'd actually be inclined to think that a liquid diet would be the most absorbable form of food, because it's broken down already, and just needs to be taken in in the small intestine. Chewy and rough foods need to be broken down first (who here hasn't seen pieces of meals several hours later floating in the toilet and thought "I DO remember chewing that stuff....right?"). So, liquid calories are actually more efficient, I'd think, same with the nutrients contained within.

And you're welcome.

Also, try counting your calories, many times people who have trouble losing fat/weight are surprised by the high number of calories being consumed, likewise, and inversely, people having problems putting weight on, are often unaware of the small amount of calories they can be consuming.

BWS1982 said:

Chewy and rough foods need to be broken down first (who here hasn't seen pieces of meals several hours later floating in the toilet and thought "I DO remember chewing that stuff....right?"). So, liquid calories are actually more efficient, I'd think, same with the nutrients contained within.

Click to expand...

Isn't that the truth sometimes I think I should just cut out the middle man and dump my dinner right in the toliet.

Sorry what this disease has done to you and many of us. But I believe you can win. I believe there's a right combination of food/medicine/prayer and other factors that can bring victory for each person with crohn's.

"that these brutal forces besiege and often capture the citadel, does not prove that they are the citadel." --G.K. Chesterton

Thanks, on a religious note though, I'm having quite a hard time wrapping my head around the whole "God only gives you what you can handle"....gee, thanks, does this justify my acquisition of this demonic disease? Is He handing out afflictions like pamplets to people, going "you can take it, you can too, same with you, you... and you over here... you also can handle this atrocity....oh, and you can deal with the loss of your two parents in a horrible accident, so... BOOM!" I know religion isn't a smooth topic to bring up, but I'm just venting, having hard times with the whole thing the last while.

BWS1982 said:

Thanks, on a religious note though, I'm having quite a hard time wrapping my head around the whole "God only gives you what you can handle"....gee, thanks, does this justify my acquisition of this demonic disease? Is He handing out afflictions like pamplets to people, going "you can take it, you can too, same with you, you... and you over here... you also can handle this atrocity....oh, and you can deal with the loss of your two parents in a horrible accident, so... BOOM!" I know religion isn't a smooth topic to bring up, but I'm just venting, having hard times with the whole thing the last while.

Click to expand...

I know that it is really hard to hear God only give you what you can handle, but I guarantee you can handle this. it's hard but you're dealing, right, you're helping other people on this forum, you're doing what you can. I have to say that if I had not had Crohns I never would have met my husband. So I am a firm believer in everything happens for a reason. It might be hard to believe now but I always think things could be worse. I always tell myself that there is always someone worse off then me. So just hang in there.

Yes, I often try to remember that there are people worse off than me as well. I just saw a guy in the waiting room to give blood, and his arms were totally gray and he had some golf ball sized lumps on them. At least I can go to Target wearing a diaper and no one knows but me.
PS - I went to target today without a diaper! Yeah pred!

I know of many people in life and on here, worse off than me. Yet, I can't help but question the fact that it was "allowed to happen" to them, either. Does the life of an infant with SIDS have a reason for his/her demise after a few hundred seconds on this planent? Whatever "reason" I have Crohns for, couldn't the result be achieved another way? If it's an epiphany, why couldn't it just be implanted in my head, or by other less destructive means? I feel whatever the reason is I could guarantee easier ways. I really don't think it's a good place, nor a good idea to discuss it, I wouldn't argue with it per se, or get defensive, but would staunchly bring up questions I feel I wouldn't get satisfactory answers to, and should probably leave it at that.

No, I understand where you are coming from. You know that I have already stated that I don't believe in God. So I don't think I have been given anything for a reason or because of destiny. But I DO believe that every obstacle that has been put in my way I have not only found a way to overcome it, but in the end I am grateful for having yet another opportunity to learn and grow as a human being. Ya, sounds cheesy and new-agey - but I take my rights seriously: my inalienable rights to "life, liberty, and the pursuit of personal happiness" (for those of you that don't know it is a direct quote from the Declaration of Independence.)

I would never in a million years say that you deserve Crohns or that it is your destiny. That is all hogwash IMHO, but that doesn't mean you can't pull something meaningful and worthwhile out of it. Everything good and bad has shaped who I am, and I happen to like who I am. If I had never been born with or acquired any of my illnesses I wouldn't have the compassion I do. I wouldn't have my vasts amounts of medical knowledge (which I honestly hold dear.) I also wouldn't know what it was like to persevere through so much. It gave me the confidence to know that I could endure through just about anything. I have grown roots despite or maybe because of my health instability.

Seems to me you are unwilling to accept your life has changed and instead of working with and around your disease, you are fighting tooth and nail against it. All for this "formative" you - why go backward when you can go forward and beyond what you could have been. Think of the humility, compassion, and patience you have learned in order to deal with the disease.... people should be bloody impressed as all get up by you. But most of all, you should be impressed by how much you have grown as a person.

I will say this: I have a difficult time attributing good to this disease, despite being aware of existence of such good....*rolls eyes because he feels like he's thanking Crohns for something*....as someone who plans on overcoming this disease I can eventually state "yes, and I achieved all this, after going through this, this, this, and poop, and this, that, blood, and more poop..."

I also feel a sort of penance for this disease, almost a karma...because about 5 years ago, when I first entered the world of bodybuilding, and for about 2 years, I was cockier and more arrogant than Brad Pitt wearing a speedo, making fun of those who resembled my former sloth and sedentary ways...but making fun of my "old self" even more than anyone else, into a sort of self hate. I accomplished an immense bodily transformation from a pudgy nerd to a lean fitness freak and to "substantiate" the transformation I put down my old self, as well as anyone still living like that. I actually believed that all disease and bad health was the result of negligant ways and could be avoided (see the irony now? GENETIC, incurable autoimmune disease?) And I regret that mindset deeply, and can't escape a feeling of "penance" as I said, even though I have high doubts of any such entity. As if the ultimate would be if I ended up dying early due to an unavoidable disease.

You cocky? Gee I couldn't tell you were ever that way But NO you are not being punished for having a dick phase, especially since you have seen the error of your ways. Seems to me you acquired that mindset in order to deal with your own emotions - and it also seems even through your dick phase the person you were hurting most by doing that was yourself.

But honestly, it seems you are still hurting yourself. You see this disease as a punishment rather than a catalyst for something else, something better. It doesn't mean the disease is good or having a disease is good. Instead it gives you more of an incentive to achieve, to find a way to live productively. You focus too much on the things you cannot have. I have no lover, I barely can make it from month to month financially, I have gained a LOT of weight, and my health just keeps getting worse as I get older. But in spite of it all I am thriving in the most important way - happiness,

I just want that kind of happiness for you.