Hard to keep going sometimes

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metallidart

metallidart

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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.
 
That is a heavy load to carry. It sounds like you will be a lot better off when you're away from the bad situation at work. As for the ulcerative colitis I hope you can find another way to treat it. I have Crohn's and thank God every day that it is manageable, but yes I know something of the pain and other symptoms.
 
I would tell your wife to get a better job until you get things sorted out in your life. She should understand what she got herself into and be willing to take the bull by the horns for a while.

Things are only going to get worse. So what you need to do is get a recliner and lay back with a couple of cases of beer for about a year and watch speed vision. Medical Marijuana is another choice you could look into.

Good luck with your problems. One thing you have to look forward to is life goes bye pretty quick.
 
metilladart,

dang sorry about your predicament. I will say a prayer for your strength and guidance!!

Matthew 19:26
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
 
Ernie, my wife, has an auto immune disease....not much fun. You mentioned disability. How old are you? It plays a part in how difficult it is to get thru SSD. http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm lists everything that they consider a disability. If you do apply, make sure you tell them about everything. Often times the big picture is what gets you thru. Be prepared for a long battle. If you have not been out of work but a month or two you will get denied. Everybody gets denied the first time around. And good luck finding an attorney that will help you if you have not been out for at least a year. Contact me and I can explain this to you. Depending on your age and what it is that is wrong with you you very well may need an attorney to get thru. I did not, even though I was only 43 or so. They look at your previous 15 years work history. I had that covered with the Post Office, and the PO said I had to go so SS had no choice.
My Dad got denied after having 5 strokes. The state took his driver license. He drove for a living, giving estimates for his business. If you figure that out let me know....
Wish there was something I could to do help with your issues. If you ever want to talk about the SSD process, or just vent a bit please do not hesitate to contact me....
Chronic ailments are one of the leading causes for depression.....
 
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!
 
When ever you are ready fire away. This is the kind of stuff that often times just talking about it helps....
 
Metallidart I am on SSDi also and ink is right check into it now before you get laid off. Some states will not allow you to draw unemployment while waiting for SSDI to make a decision. Sounds like you really need to go on it. I am a severe diabetic,along with a ruptured disc in my lower back (Dr. says I am too high of a risk to operate) ,degenerative disc disease, arthritis,high blood pressure, neuropthy in my feet and legs so I am in a power wheelchair. I am happy to add you to my prayer list and like Doug pm me anytime he is a great guy to talk to.
 
I wish I could offer substantial advice and thoughts, but I can't, other to say some of us are at the other end of the same leaky boat. Hang in there, change your doctor if you don't get cooperation
 
I know it doesn't make sense to say this but you need to find some way to hire a Lawyer to help you with the SSDI.We fought for 2 years on our own with my wife's disability claim and finally hired an attorney that specializes in that.Had it in 6 months.We struggled to come up with the money to pay her but in the end it was worth it.
 
i am so sorry to hear of your condition. my dad had ulcerated colitis, it made his life a living hell. he had his large intestine removed before it became intestinal cancer. at 75 years old he decided to get an ostomy. my wife is a geriatric nurse, so he talked to her, and she told him it would help his quality of life. he went thru with the surgery, had his large intestine removed, and had an ostomy. now he doesnt have to scope out the bathrooms, and the quality of life for my mom has improved as well, because now they actually go places without dad worrying about messing himself.

i am sure theres things to help your arthritis. but i dont know anything about that or your spinal problem. i have a friend who has stiff joints and gets disability from his past service in the air force, simply because they arent sure his job with the air force for 20 years caused it. he was a nuclear weapons tech for most of his service.

his doctor advised him to stay mobile, and doing things to keep his joints moving, otherwise he will stiffen up and become crippled.

i am no doctor, but i will surely keep you in my prayers.

matt
 
Back in Time said:
I know it doesn't make sense to say this but you need to find some way to hire a Lawyer to help you with the SSDI.We fought for 2 years on our own with my wife's disability claim and finally hired an attorney that specializes in that.Had it in 6 months.We struggled to come up with the money to pay her but in the end it was worth it.
Click to expand...
Chances are very slim of finding an attorney that will help you while you are still employed. You have to be disabled for 5 months before getting a check. SSDI attorneys get paid 25% of your lump sum. So if you are only out of work for 6 months when you get thru your lump will only be 1 month. No attorney will work for 25% of 1 months payment. So you having to pay her out of your pocket makes no sense.

http://www.ssdrc.com/disabilityquestions2-23.html

They do not get paid until you do, then they get paid automatically from SS out of your lump.....in another words you got ripped off......
 
Put the fiance' to work or tell her to look for a better job to help out. If she's in it for the long run she can suck it up. (sorry don't mean to sound crass, but it dosen't sound like she's helping you) Prayers sent.
 
inkjunkie said:
Chances are very slim of finding an attorney that will help you while you are still employed. You have to be disabled for 5 months before getting a check. SSDI attorneys get paid 25% of your lump sum. So if you are only out of work for 6 months when you get thru your lump will only be 1 month. No attorney will work for 25% of 1 months payment. So you having to pay her out of your pocket makes no sense.

http://www.ssdrc.com/disabilityquestions2-23.html

They do not get paid until you do, then they get paid automatically from SS out of your lump.....in another words you got ripped off......
Click to expand...

Maybe I misunderstood....thought he was looking at permanent disability.
 
I almost hate to say this but I have to.
The MOST diturbing part of the whole post was this part,

"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."

Ok, here I go.
Dump the inconsiderate *****, go on full disability and find something you can do on the side.
Not trying to be an *** or anything but she is just going to get worse, and more abusive as you get worse and less able.
Next you'll find out she is going out with someone else and talking **** about you while she's doing it.
Sorry, I know this isn't what you need to hear right now, but what makes you think she's going to be better with it later?
Selfish and inconsiderate of the situation now, worse later.
Just a fact.
Note what I underlined in what you said.
It's a BIG clue to what you have to look forward to with her.

Sorry
 
Sure sorry to hear this Metallidart. I too deal with a lot of physical ailments. Arthritis, multi level degenerative disc disease, migraines, diabetes, really high blood pressure, and a nerve disorder that they can't seem to identify (my brother has it also) they call Myoclonus. I've had to back surgeries in the past year and half and have lost 2" in height. The pain is somewhat lessened but still pretty bad a lot of the time. 9 yrs. ago I turned 40 and could barely do my job anymore (mobile forklift mechanic) due to severe back pain and chronic migraines. My boss rode me like an old wet horse. If it weren't for work being real slow I would have lost my job sooner but I stuck it out another year when they told me I had to either go on disability or quit. Thank God I had a good insurance disability plan through them that paid if I couldn't do that type of job anymore. They did require me to sign up for SS disability that got approved after the 3rd go around with a lawyer. Like someone said tell them about every little issue. At first I didn't mention the migraines but as soon as I did the judge approved it. I still get out and do some things in the garage and around the house but it takes all I can muster most days along with taking 3-4 vicodin to keep the pain down to a level I can tolerate. Sorry to get so long winded. When I see another young guy going through what I've been through I relate. I will keep you in my prayers and those aren't idle words, I do pray a lot as it's the only thing that keeps me going. Tried the dope and booze when I was young and found out it's no life. Gave God a chance and found it to be very rewarding and fulfilling. Hang in there little brother and PM me anytime you want to shoot the breeze
 
Back in Time said:
Maybe I misunderstood....thought he was looking at permanent disability.
Click to expand...

I believe he is...but you made mention of having to scrape the $$ for YOUR wife to get thru. A SSD Attorney does not get paid up front. Click the link I provided and it will explain how it works. The attorney does not get paid until they win......and they get 25% of the lump sum.......this is the law......you do not pay up front out of your own funds.
 
inkjunkie said:
I believe he is...but you made mention of having to scrape the $$ for YOUR wife to get thru. A SSD Attorney does not get paid up front. Click the link I provided and it will explain how it works. The attorney does not get paid until they win......and they get 25% of the lump sum.......this is the law......you do not pay up front out of your own funds.
Click to expand...

I read the link and now you got me thinking I effed up things in my mind.Will have to ask the wife exactly what went down.I know we paid $500.00 up front for something.Not unusual for me to screw stuff up in my head, this was back in 1985.:banghead:
 
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.
 
Moparmatt2000, thanks for the info! Sorry to hear about your father having it also. I have asked multiple doctors about having the affected parts removed, but they always shoot it down. They want to try every other avenue first, and the only thing left is the IV meds, like remicade, humira, etc. They bring your immune system down so it stops attacking your body, but then you risk having what would normally be a simple infection kill you because you can't fight it off. The same med would also help the arthritis, because it's my immune system attacking my joints and deteriorating my discs, and causing the inflammation. And making me feel like I have the flu all the time, without the runner nose lol. If it would help my quality of life, then I would have it removed in a heartbeat!

Fishy68, thanks for the prayers! Sorry to hear about your back. Another of people just don't understand pain like that. I know people stare at my dad, and it drives me crazy. They ask why can't he work? If he can mow his grass, or work on a car, or ride a Harley? They don't know how it makes it much worse if you sit and do nothing, nor of the pain you feel when you are done. His neck being stuck forward and hunched over makes him get stuck under cars, and it freaks him out. His bike is easiest for him out of every thing, because it takes the strain from his back from the position of his arms, and he can stand and turn his body to look for traffic at intersections. I never realized the pain would be that bad until it started happening to me. I talk to him about it all the time, he can always tell me exactly what I am feeling. I can definitely understand your pain, and it's comforting in a way to hear from people that understand mine. I also get horrible thumping headaches, starting at my neck, and it feels like if something would crack it would go away. I don't dare try to crack it. I can't, and it just makes it 10x worse.

Thanks everyone for the comments! I have to head to work now. Hope the boss just stays away from me. You guys put me in a better mood, and I hate having that ---- bring it down! 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.
Click to expand...
My friend I know how you feel I have physorisis which is auto aune disorder,my sister has rumotoid arthritis also, it very pain full mostly in fall winter and spring I clear up in the summer, hurts so bad I can't even take a shower I must take a tub bath, I can't take meds for it because it suppresses your amune system and with the work I do being in somebody's diffrant house every day several times a day I would sick as a dog and I know I wouldn't be able to work, so I elect not to take the meds, I'll be praying for you and your family I know it's hard but you can make it through it
 
wow, when i first met you via PM ....i had no idea any of this ....you definately seemed like you are holding it together very well as a first impression.

i cant relate to any of these problems but i do feel for you. i am a PM away anytime and sorry about my slow respsone VIA PMs ....im slow at stuff like that but i dont forget.

Prayers sent for you.
 
I don't presume to know your situation but a few things come to mind regarding your medical conditions...maybe it's time to make a renewed effort to improve your diet, drink plenty of water and identify and avoid foods that make your symptoms worse. Look for ways to reduce what stress you can. Have you tried probiotics and other supplements you read about online that have helped others? Also many people have seen improvements through reading books that show you how to change thought patterns and beliefs that contribute to your illness. Years ago, I found a book called "You Can Heal Your Life" by Louise Hay, while I'm still not convinced of everything she claims, it got me to believe that our thoughts do play a big part in our diseases and we do have the power to change our thoughts.

Just throwing this out there for what it's worth and you are in my prayers.
 
Ernie has ankylosing spondylitis along with psoriatic arthritis. SHe also has sjogrens disease. Her last blood test some other marker was triggered, but they do not want to worry about it just yet. They said that this one, if it sticks it's nose in any deeper may become a serious problem. These diseases truly suck. Ernie has tried several of the different meds. She was taking that home injectable one, Humara. It cleared up her finger nails but that was about it. She would have lumps that lasted weeks from the injection. Has been on several pills, all with no result. They now have on an orencia infusion. She would have had her fourth one of she had not come home sicker than a dog from her trip to AZ. One of the biggest problems for her is these auto-immune disease run your immune system into the gutter. So she is real susceptible to anything that comes her way. So far she has been lucky, other than a few colds and stuff it has not been to bad. This latest things is kicking her ***, she is on her second z pack, while she is getting better her recoverer is about half the speed of what it was prior to all this crap starting. Be prepared for a lot of folks to doubt that you are sick. The wife and I get it constantly. Could be because the only thing they see is the side of her that she forces, where she is smiling and laughing and joking around. What they do not see is that she spends 10 or so days a month in her pj's, locked inside the house, absolutely miserable. There are days when we are out and about and she literally groans with every step she takes.
 
inkjunkie...just to let you know I talked to my wife....I had it totally wrong and am going to stick to posting about cars...at least I know a little about that subject:banghead::D
 
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