Hard to keep going sometimes

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Oldmanmopar said:
You don't need an attorney. It is your state reps job. Had my SSD in my hands in one month. They can push it through the red tape. With a attorney its always denied for at least one time and takes almost two years.

Been there and gave others this info and it worked for them.
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Very true. The longer it takes to get thru the more $$ the attorney will make. I have not been keeping up on this stuff since getting thru but some states were going to start an electronic system. If you have certain things wrong then you would sail right thru.

I posted a link to a page on the SS site that details what they deem a disability. My doc listed what my diagnosis was and than just cut & pasted the info from the ss site word for word. Depending on what is wrong with you, and what state you live in has a lot to do with if you need an attorney. But as I said earlier, most of them will not take on your case until you are out at least a year, 5 months of that you are not entitled to any ssd income anyway.

The system is pretty effed up, in my opinion. Since being out I have only gotten a letter from them once, asking my doc if he thought I was still disabled. It can indeed be a royal pain in the *** to get thru, depending on what ails you. IU have a former neighbor who fought with them for over 3 years before he finally saw a judge. Got denied at that level. I believe he appealed it, now he is waiting for his day in court. Of course he has not had any income in close to 6 years.

Anyway, to the OP of this thread, I will be waiting to hear from you when you are up to it. If you would like to speak to my wife about the auto-immune stuff, please just say so. We will gladly give you our phone number. One of the things that is helping both of us out is just being here for each other.....and talking about everything.
 
Trailbeast-I have worried sometimes it would come to that, but I guess I will find out how she really feels when the time comes for me to apply for ssi. I told her that her attitude really bothered me, and that it isn't like I just called off work because I didn't want to go. I think she felt pretty bad, and has been trying to make it up to me. On the other hand, she does the same thing all the time. I guess I will do whatever I have to do.

66mopar77-Thank you! What you have sounds really rough. Especially with your job. Those immune system suppressants seem to work pretty good with getting the bad stuff under control, but they open up a whole new can of worms. I hope you are able to find some way to make it more bearable.

Rani-Made me smile! Lol. Thank you. I try to keep it together, I just make myself remember that it could be much worse. Sometimes it gets to me pretty bad though.

Goldfish65-Thanks for the advice! I try to watch my diet, no fried food, no spicy stuff, no brownies, pizza. Anything else is just hit and miss. The biggest thing that has helped is keeping a schedule. Eat at the same time every day, medicine same time, etc. I will check that book out, I love to read.
 
I hope you are having a better day than I am having.
 
inkjunkie said:
Very true. The longer it takes to get thru the more $$ the attorney will make. I have not been keeping up on this stuff since getting thru but some states were going to start an electronic system. If you have certain things wrong then you would sail right thru.

I posted a link to a page on the SS site that details what they deem a disability. My doc listed what my diagnosis was and than just cut & pasted the info from the ss site word for word. Depending on what is wrong with you, and what state you live in has a lot to do with if you need an attorney. But as I said earlier, most of them will not take on your case until you are out at least a year, 5 months of that you are not entitled to any ssd income anyway.

The system is pretty effed up, in my opinion. Since being out I have only gotten a letter from them once, asking my doc if he thought I was still disabled. It can indeed be a royal pain in the *** to get thru, depending on what ails you. IU have a former neighbor who fought with them for over 3 years before he finally saw a judge. Got denied at that level. I believe he appealed it, now he is waiting for his day in court. Of course he has not had any income in close to 6 years.

Anyway, to the OP of this thread, I will be waiting to hear from you when you are up to it. If you would like to speak to my wife about the auto-immune stuff, please just say so. We will gladly give you our phone number. One of the things that is helping both of us out is just being here for each other.....and talking about everything.
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Works...I can't say how much I appreciate this. I was alot busier tonight than I thought I would be, but I thought about this stuff all day. You have helped give me some direction, and hope. You, and everyone who has posted.

I would like to talk to you both about the system, disorders, and how you guys manage it. I really do look forward to talking to you.
 
metallidart said:
Works...I can't say how much I appreciate this. I was alot busier tonight than I thought I would be, but I thought about this stuff all day. You have helped give me some direction, and hope. You, and everyone who has posted.

I would like to talk to you both about the system, disorders, and how you guys manage it. I really do look forward to talking to you.
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Ink is right look everything up and copy and paste it, also get your doctor to help too. I was son SSI for 3 months and then SSDI from then until now. The only reason was my Doctor pushed it because everyone thought I was going to die so I fooled them. LOL
 
metallidart said:
Thanks guys, for even taking the time to read the novel I wrote. Each response made me smile little.

Goldfish65, sorry to hear about the Crohns, you are right, they are alot alike. I too am thankful for ever day that is manageable, and the days when I get to feel like a normal person are great.

Oldmanmopar, yours sounds like a good idea lol. But, I can't sit still! Believe it or not, some people are saying that the medical marijuana puts uc into remission in a high percentage of people tested. My dad swears it helps his arthritis, probably why he has stuck with it for the last 43 years or so! Haha. I think alot of my time unemployed will be devoted to doing what I need to do to feel a little better, make sure I have a future, and enjoying the kids.

Aengineguy, thanks a bunch for the prayer. My family isn't very religious, and I think that is the first time anyone has said something like that to me. Made me feel pretty good.

Inkjunkie, I will be getting ahold of you. Feel a little out of it at the moment, or I would right now. I checked the sight out, and all 3 of the disorders are ssi eligible, depending on severity, etc. I will be 34 in a week, so it will probably be rough for me to get it. But, I have had the diagnosis of all of them for at least 6 years, multiple hospital stays, and a family history of the same things. I really appreciate the help, and like I said, I will definitely get ahold of you.

Thanks again guys!
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Tell Dad to roll one for you. It might help the UC and it helps arthritis! (Cannabis is an anti-inflammatory.)
 
Jarlaxle said:
Tell Dad to roll one for you. It might help the UC and it helps arthritis! (Cannabis is an anti-inflammatory.)
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Funny thing is, I'm sure I wouldn't have to ask twice lol. He would probably do it in a heartbeat. I have heard that it was an anti-inflammatory, and I know the uc also involves inflammation. I have never done it, but if the doc says I should... Lol
 
metallidart said:
but for the sake of my kids and the people I care about, I don't have any other choice. Gotta keep pushing on.

I have to vent to someone, so maybe someone on here can relate. I know that there are people much worse off than me, and that is another thing that keeps me going. Keeps me trying to stay positive and happy.

I had to call off work again today. The place is already shutting down, and I know I will be getting laid off. Not a big deal, as I work in Pennsylvania, and the unemployment pay is decent. Besides, after only a 25 cent raise after 5 years, I don't really want to stay. I can do anything in the building, and anytime anything is a rush and needs done fast, and right, they put me on it. But because of my health problems, they feel that they can hold them against me. My boss has an attitude towards me non stop, talks to everyone but me, and flat out ignores me if I say good morning, etc. The first 2 years, I went from $8 an hour to $12 an hour, and now I am at 7 years and $12.25 an hour. Hard to raise 6 kids, have a house, etc on that. But I manage, and regardless of how depressed I am, I am always the fun guy to work with, the kids love hanging out with me, I just like everyone happy and smiling.

Anyone know what ulcerative colitis is? I have that, and it is severe. I take prednisone for it every day, can't seem to get below 10mg a day or I have a flare up. When it flares up, I have intense pain, blood, and I don't dare go far from the bathroom. I generally get a flareup every 2-3 weeks, which means boosting the prednisone up to 60,then tapering it off slowly. That stuff isn't supposed to be taken long term, but it is the only thing that works. I have to get bone density scans, blood work for sugar and chlorestorol levels, etc because of the med. The pain is horrible, feels like either a knife in my stomach, or like my body is trying to push my intestines out. I sometimes even let out a scream, if I know the kids aren't home. Don't want them to worry about me. I have vicodin for the pain, but it is pretty much useless. To make things worse, my cousin, same age as me, passed away a couple years ago. She had UC also, and developed colon cancer. She was 31.

I also have rheumatoid arthritis, and ankylosing spondylitis. All 3 things are autoimmune disorders. I'm sure you all know what the rheumatoid arthritis is, and I have it in pretty much every joint, but it only really hurts in a flareup. The ankylosing spondylitis sucks. Discs in your spine deteriorate, and your vertebrae fuse together as on peice. My dad has it, he went from 5'11" to 5'4". Ribcage fusing to his spine so he can't take deep breathes. Can't move his head, twist his body, etc. I have nerves that pinch all the time, randomly, that knock the wind out of me, and without the prednisone, my sciatic is so bad I can't walk.
Not only is all of this painful, but it causes extreme fatigue. And it's embarrassing. Especially the ulcerative colitis. Always got to scope out the location of the bathroom wherever I go, just in case.

Knowing all of this, my boss has told me multiple times that I "need to suck it up and make it to work. " He stands near my work area and stares at his watch until I get back from the bathroom, when everyone else does the same thing, but less work. He even had a coworker write down when I came back from the bathroom once, which also made my coworker, my friend, really uncomfortable.

Two of the disorders are basically disabilities, according to the us government site. I also have adhd, and I take medication for that, and it has helped me start to get my life on track.
Anyone have any similar issues? I don't know if I should try to get disability if I get laid off, because I know that I am not ever going to get better, just worse. Or should I go to school? It's hard with 6 kids, a house, etc. My fiance doesn't really understand, she gets irritable and jealous if I am not working, even if I am so sick I can't get out of bed. I would like to get a degree in mechanical engineering, but I don't think I will have her support in it. Even today, she is upset that I am not working on the new house since I didn't go to work.

Just wish I knew what to do.
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Praying for you. Hope things work out and your fiancé becomes more understanding of your problems
 
Update this week:
Horrible week for flareup, I went into work late on Tuesday. I almost went to the Er, the pain was unbearable. I took enough med to be able to go in half a day, but still got a HUGE attitude from my fiancé, and a nice little argument. All because she doesn't want me to complain if I am broke. Since I have control over my colitis, I guess. Grrr. Next 2 days were spent not so happily.
Once I get to work, my boss proceeds to voice his opinion about my "tummy ache", which almost led to a huge loss of temper. Instead, I asked if he wanted to try to be at least somewhat intelligent and and I would explain, once again, what is wrong with me. He said no. So, I stepped into his office, slammed the door shut, and said too f---in bad. I proceeded to tell him in detail everything I know about my disorder. To my surprise, he listened, and sounded somewhat apologetic. That was Tuesday.
Well, yesterday was my birthday, and I actually felt a little better. The place is going out of business, and I have been hoping for a layoff. Well, talk about a birthday present...I got laid off! I was the last one called in, and they kept just a skeleton crew. I still get my profit sharing, etc. I am happy about it, because I can finally either go to school, or start the trek towards disability. I think I am just glad to have what feels like a new beginning.
 
It almost sounds like you have crones in stead of UC. I have UC but don't have the pain like you do. You might want to talk to your Dr about the medicine Lialda, I take one pill a day and it has really helped me. Hope this helps.
 
Still praying for you. Good to hear things are looking up. As others have said, having a bitchy fiancée in your life can't be good for your health.
 
Moparguy1, I will do some research and ask me dr about that medicine. Thanks for the info! As for it possibly being something other than uc, like Crohns, unfortunately I've had so many colonoscopies, etc that they are positive that's what it is. From what I understand, my pain comes from the severity of the ulcers, and something called tenesmus. I've heard and read that that pain is comparable to being in labor (actually read from some women they would rather give birth than deal with the uc pain!) but I don't think I will ever know (or want to know!) I know it drops me for a while after it passes. The tenesmus, which is when your body basically tries to push something out that isn't there, has actually started 3 small hernias in my stomach. I have no control over the pushing and strain. Right now, that's the worst part of the disorder.
But, regardless, I am determined to pull through it!
 
Well I hope you get it under control, I know it is hard to deal with sometimes. Unless you have it you have have no idea what it's like.
 
I finally worked up the courage to talk to my doc about disability. He said that with 3 different autoimmune disorders, the fact that I was laid off because of my UC and the way my former bosses handled it, the family history of the same disorders, and my long-running medical records, he has no problem with doing what it takes on his end. Made some appointments with some specialists, and even my psychiatrist said that he would do what he could to help. Also, the fact that I was also diagnosed with adhd and take med will helpwith the decision, according to my dr. He advised me to get an attorney just for the fact that it will be less likely to have any "little mistakes or set backs" and I won't have to wait as long. I guess in the back of my mind I was hoping the dr would laugh and say, nah you will be fine. Reality sucks sometimes.

On a better note, I got my super cheap springs/retainers in the mail today for my 5.9 mag.
 
metallidart said:
I finally worked up the courage to talk to my doc about disability. He said that with 3 different autoimmune disorders, the fact that I was laid off because of my UC and the way my former bosses handled it, the family history of the same disorders, and my long-running medical records, he has no problem with doing what it takes on his end. Made some appointments with some specialists, and even my psychiatrist said that he would do what he could to help. Also, the fact that I was also diagnosed with adhd and take med will helpwith the decision, according to my dr. He advised me to get an attorney just for the fact that it will be less likely to have any "little mistakes or set backs" and I won't have to wait as long. I guess in the back of my mind I was hoping the dr would laugh and say, nah you will be fine. Reality sucks sometimes.

On a better note, I got my super cheap springs/retainers in the mail today for my 5.9 mag.
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Thats a great start. Your doctor knows his business and gave you great advice. Good Luck.
 
Thanks! Actually, thanks to many on here for the help and ideas. You guys helped to point me in the right direction, and gave me things to watch out for.
 
Hope the path youre taking works out well for you.Not much to add but that sometimes we dont have much choice in life but to move ahead to whats in front of us. Good luck to you.
 
Thank you. I've decided thats all I can do, try to change what I can change, make the most of what I can't, and try to enjoy everyday as much as possible.
 
Man, you have alot on your plate. I have a bad back and always will now. Not bad like yours, also depression. Its good to talk/vent here because alot can relate and help. I feel for you to the extent of pain. Sure no one knows exactly how others do but they can come close at times. As for Pot.....I dont do it now but being in the Medical field i know it works for people....Not all. You have to do what you need to and as far as im concerned..........If your not hurting anyone do what you can to be pain free. I wish i could do or say more to help you but i cant, other than thinkin about you and hoping all gets better soon. Keep your chin up and all the best
 
When your at the bottom, and seems no way out, sometimes you have to dig your own steps toward the top. Seems you started this, and I'm glad. I'm no doctor, but all of us has felt pain and it isn't very fun. The FABO friends can offer support, but none like in person. Along with the steps you've already taken, I would find a Christian church that will pray WITH you (and not just for you). You may have to visit a few, but the church is made up of people from all walks of life. I don't like to say "dump" your fiancé. She may not know how to handle this either, and may actually feel worse than you think. Some people are poor responders to situations. Perhaps church, pastoring, will help her too. "Faith is the substance of things hoped for, the evidence of things not seen". The absolutely best to you and your family
 
When you do file for SSD include EVERYTHING that ails you, no matter how insignificant it might be....as long as you have had the condition for a year, or it is expected to last at least a year. SS uses different guidelines, age defendant. The younger you are the more hurdles they toss at you. So don't be bashful. I found out that one of the things that SS takes into account is how many "down" days you have a month. Being that you were recently employed they will probably take into account how many days a week/month you were incapacitated. If I remember correctly I believe the number is 5 days. Recently read somewhere that SS has eased up some on what they will let thru. Keep in mind that when you get thru you they, the SS folks, will "check up" on you. They will send you a form letter with some simple questions, this is how they determine if they need to do a full scale review on you. In the five years I have been disabled I got a letter from them once. My wife just received one a few months back.. Not saying you would stop seeking treatment, but to keep the SS folks satisfied you have to keep seeing your Docs. Pretty sure if SS deems you disabled and you have dependent children that they will be entitled to some funds as well. Don't quote me on that, but you might want to ask about it. I wish you the best of luck in both your health and well being and the SSD process. My offer still stands about chatting with you about all of this....
 
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