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Author Topic: My story  (Read 19335 times)

concerned

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My story
« on: July 06, 2014, 07:23:00 am »
I'm lucky in a way to meet a listing, and probably will continue to, am 51, but, should roll into retirement,on ssdi, decent ck., worked 25 years, but, would rather if i never got ANY of my disabilities!! That said, "I am totally grateful that ssdi exists, at least I am able to get a check because what would I do without it". During the time I have been on ssdi, I have worked a little, for a while up to 16 hours a week. I can't do full time and at times, can only do 3 to 6hrs a week. At one time i was going to quit because i couldn't do the work and the ladies i work for said no! They want to keep me on, if i can't work they work with me. I feel very fortunate about them. It is possible to feel better(not 100%) but better and at other times totally not able.Maybe, at some time, I won't be able to do anything at all, but, for now I am grateful. When I was reviewed, I was up front with ssa, had all my stubs, and explained my situation! Things went well. I was re-approved. I have been on ssdi, 12 years, didn't work the first 7years., but tried a few jobs. after that, 3 failed, then i got with this company, worked up and down about 3 years with them. I can only stand for 3 hours per without needing to get off my feet. Diabetic neuropathy is bad. After being off them for hours, the pain subsides, so shifts r 2.5hrs to 3hrs. I know this is long, but, want to show, true disability,gets approval........Be honest!!.......Concerned
« Last Edit: July 06, 2014, 10:46:10 am by Tippy »

Just Me

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Re: My story
« Reply #1 on: July 06, 2014, 12:27:03 pm »
concerned, Thank for sharing. Some of us won't ever be 100% again and that is very difficult to accept. But, we do have good days and we have a new appreciation for them. We also need to remember that on the bad days, that there will be more good days. We can't truly appreciate the sunny day until we've had the rainy and stormy ones.
Nerve damage in upper and lower extremities. Degenerative Disc Disease, RA.

Hope the size of a mustard seed can produce Faith that can move mountains.

concerned

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Re: My story
« Reply #2 on: July 06, 2014, 06:32:26 pm »
Hey Just Me, Thank u very much! I know that a lot of people want to get on disability very badly! As we know, It's not all it's cracked up to be, but, is a great thing that it exists. What would some of us do without it? It is not the end of life, however, and I will continue to try my best to get better and who knows? At least trying keeps us living life, not that depression isn't always lurking in the background! I also have come to love this site! I feel like I have a whole group of friends that r always there to help and am very happy when I think that something I have to say, may help others! Thanks again to everyone..........Concerned

jimmyj

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Re: My story
« Reply #3 on: August 14, 2014, 03:29:29 pm »
Diabetic neuropathy is bad !  I hear you on that !! I have the same thing and it is bad ! and it seemed to get very bad after I was in the hospital with a nasty infection that ran up to my knee you could see red streaks up my leg , I think the infection really screwed things up for me ! or maybe the heavy duty antibiotics' played a role in it , because within months of that I ended up with a charcot foot luckily my arch didn't fall because it was caught early . I am still left with a ankle and foot that has serious edema to the point I cant even put a shoe on and now I am in a crow boot which really stinks but at least I can move around with it a little .
so I know what your going through and it could be worse that's for sure ! does yours wake you up in the middle of the nite?
what are you taking for it ?

concerned

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Re: My story
« Reply #4 on: August 15, 2014, 08:09:11 am »
Hey, Jimmy, Yes, Diabetic Neuropathy, does suck, doesn't it? I have been taking Gabapetian(Neurotin)800mg/3 times/day but lately it has been bothering me more and more, also lately my arms have been bothering me, from my hands up to my elbows! I was just at the neurologists on Monday and he called in another drug for it but I am picking it up on Friday, so I will let u know the name of it when I get it.
      I am still working, currently, 5 hours a week, 2 shifts! I was hoping when school goes back to maybe pick up one or two more at one of the Catholic schools my company services. I'm sure my company will let me give it a try and let them know how it is working out, but, still a few weeks to see how the new medication is working! I do like to work a little, but, I'm not sure how long it will be possible. I like to tell people that ask me what I do, I work for company x, instead of I'm on ssdi! What they don't know, won't hurt them! Some people r so hard to deal with, they either give me the OH, I feel so sorry for u, or, U r on disability, crap! Most of all the little bit of extra money comes in handy, but, at the end of 2 or so hours, my feet feel like they r on fire, they burn terribly!
      It is also funny, Jimmy, it could be the middle of Summer, on a 90 degree day, and my feet r very cold, so I get both, hot and cold. It is very frustrating!.......Concerned

jimmyj

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Re: My story
« Reply #5 on: August 15, 2014, 09:35:29 am »
Hey, Jimmy, Yes, Diabetic Neuropathy, does suck, doesn't it? I have been taking Gabapetian(Neurotin)800mg/3 times/day but lately it has been bothering me more and more, also lately my arms have been bothering me, from my hands up to my elbows! I was just at the neurologists on Monday and he called in another drug for it but I am picking it up on Friday, so I will let u know the name of it when I get it.
      I am still working, currently, 5 hours a week, 2 shifts! I was hoping when school goes back to maybe pick up one or two more at one of the Catholic schools my company services. I'm sure my company will let me give it a try and let them know how it is working out, but, still a few weeks to see how the new medication is working! I do like to work a little, but, I'm not sure how long it will be possible. I like to tell people that ask me what I do, I work for company x, instead of I'm on ssdi! What they don't know, won't hurt them! Some people r so hard to deal with, they either give me the OH, I feel so sorry for u, or, U r on disability, crap! Most of all the little bit of extra money comes in handy, but, at the end of 2 or so hours, my feet feel like they r on fire, they burn terribly!
      It is also funny, Jimmy, it could be the middle of Summer, on a 90 degree day, and my feet r very cold, so I get both, hot and cold. It is very frustrating!.......Concerned
ahh I was on gaba it really made me weird confused dopey more then usual LoL  yes let me know what they put you on always looking for something that works . I take lyrica and muscle relaxers oxy and perks for the break through pain. and I can still see my leg muscles twitching its like they have a mind of there own. my feet kill me ! I am not sure if yours wak you up in the middle of the night ? its like a tooth ach man! pacing the house at 3.00 am wanting to cry . and my right leg is so sanative to the point where I cant have the sheets from my bed on it , strange hu? my lower back is the same thing one of my buddys gave me a slap on my back and I mean more like a pat but it felt like he whipped me with a fly swatter very odd its like the nerves are very close to the top of my skin .
the last year or so I can feel it in my hands tingle I guess you could say , and again sanative I smacked my wife on her but and dang it stung my hand ! do you have these issues or maybe someone on her with diabetes has these issues ? just trying to figure this crap out . I found out I was diabetic when I was 30 and I prolly had it way before then because I was young and never went to the doctors . and I abused alcohol pretty bad even when I found out I was diabetic and I didn't stop until I landed in the hospital and the doctor said  with a a1c at 11.7 and what I am doing I will be dead in 5 years so I gave up the booze and got my a1c down to 6.8 or something which is great for me . But I think the damage was done and the only thing I can do is keep it from not getting worse .
I still smoke cigs which isn't good but I am trying to cut them back also I wish I could give them up as quickly as I did with the booze its just working out like that yet .. sorry to high jack your thread seeing your post made wonder if you have these things also ..

and hey I get it about people feeling sorry for ya and I will be honest I do feel sorry for myself at times it really gets you down , and then when I am out I see other people and think wow it could be worse .

how are the pulses in your feet ? I have very strong pulses  and my feet seem to warm all the time I haven't seemed to get the temp changes like you do. when I have my compression sock on my leg sweats like a mofo .
and hey at least you are getting out of the house and moving around which is a good thing

concerned

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Re: My story
« Reply #6 on: August 15, 2014, 03:05:02 pm »
Hey, Jimmy, I just got back from the pharmacy and got the new drug, it is called topamax, 50 mg, 1/8pm. Wow, Jim, the side effects look bad, but, I will try anything, My neuro Doc. knows his stuff, so, tonight is the night!
     Jimmy, I have type 1 diabetes, and need insulin to control my blood sugar, I am on an insulin pump! I used to have to take injections, 3 times a day, a long acting and short acting kind, but, since I got the pump it is a little easier. With the pump, it is only short term insulin, because it is set to constantly give me a certain amount every six minutes and then when I eat, I push buttons to cover that. My last a1c was 7.2, but, I do get a1c's in the 8's so it is not always the best! I also, have to watch because I get low blood sugars! It is hard to work but fortunately the people I work for allows me to take care of it and rest if needed. Still, I have a hard time doing it and like u said at least I do get around.
       Neuropathy, absolutely came from the diabetes and everything will only get worse in time, but, the reason for disability in the first place as I see it, is so that we could get some quality out of our lives, and that is what I intend to do. If I could have a magic wand and get rid of all the problems I have I would do it in a second. Many people I know think disability is wonderful, but, it is not, but , thank God we have it.
       I am also on pain medication for back and neck problems, which I believe is all caused by everything combined! I will continue to take my meds. and live my life to the best I can, God intends for us to all do our best and take our medicine and live a full life, disabled or not, u do the same Jimmy. Good to talk, look forward to it in the future.......Concerned

CPA-Kim

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Re: My story
« Reply #7 on: August 15, 2014, 03:13:55 pm »
I take Topamax for migraine.  It does help with the pain but turns your brain into mush.  You're on a low dose (I think the lowest is 25.)  Hope it helps you.  Don't let the side effects scare you until you give it a good try.
Kim - 58
Bi-polar II, Meniere's Disease, Herniated c-5/c-6, TMJ dislocation and dysfunction, Panic Disorder, Classic Migraine, Post-concussion syndrome, Hashimoto's, Supraventricular Tachycardia, Fibromyalgia, Chemical Sensitivity.

jimmyj

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Re: My story
« Reply #8 on: August 15, 2014, 04:42:10 pm »
ahh I heard of Topamax keep me posted on that !
brain into mush sounds like gabapentin did to me , I think my cousin was taking that helps for weight loss also correct?
my doctor said an insulin pump was prolly a good idea for me but I lost my insurance so I never got to try it .
they let you work on pain meds? or what they don't know wont hurt them lets say
I was working on pain meds and you gotta do what ya gotta do, but looking back i shouldn't have done it god for bid someone got hurt because of me what a mess that would be ,i don't even drive no more unless i can hold off and taking them which pretty much is never , my daughter drives me around now ,good for me bad for her hahaha

and yeah man i feel bad for the people back in the day where they didn't have what we have now i really don't know how they did it
so yeah take your meds and enjoy yourself ! you only get one life and you gotta live it ! 

diamonds1.5

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Re: My story
« Reply #9 on: August 15, 2014, 08:28:17 pm »
ahhhh Topamax....on my list of drugs for migraines that did not help (I have a long list )..becareful with taking it it could cause mood changes/ dreams etc.....if so call doc ASAP

concerned

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Re: My story
« Reply #10 on: August 16, 2014, 09:09:57 am »
Hey Guys, So, I took the Topamax for the first time last night, I'm a little groggy this morning, but, I'm a little groggy every morning! I guess I will have to give it a few days, maybe a week  to see for sure. My legs and hands don't seem to be bothering me as much as normally do, but, could be my imagination, don't know! It seems that from what I have heard of this drug, have not heard it used for neuropathy, but, the neuro. should know, right?......Concerned

jimmyj

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Re: My story
« Reply #11 on: August 16, 2014, 11:18:24 am »
oh good news man! hopefully it works for you ! yeah give it a few days I know we all wana think its better soon as we take stuff hopes and dreams ,but we can only hope! and yes watch the side effects my cousin was on that stuff I remember her saying soda tasted funny or something and had problems eating maybe I forget ,she went off of it because of the side effects be careful bud .
thanks for the update and please keep us posted for sure !

concerned

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Re: My story
« Reply #12 on: August 16, 2014, 07:22:08 pm »
Yo Jimmy, I took that new pill for the second night tonight, I don't feel a thing rite now, but, I doubt it from the new pill in any way!
     My other medications probably may mask out this medication somewhat, too, ya know, but, thanks, man! Have u ever taken this junk, bro? What r u in 4, man, or u tryin to get in, my memory is not quite there now, Jim?......Concerned

concerned

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Re: My story
« Reply #13 on: August 16, 2014, 07:27:25 pm »
So Jimmy, U just applied rite Man? Just last week, r u in that part where u introduce yourself.......Concerned

jimmyj

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Re: My story
« Reply #14 on: August 16, 2014, 08:28:40 pm »
yeah like I said my cousin was taking that stuff and was getting weird side effects , and my wife said said she tried it to help her lose weight and it really was messing with her head, and it made her feet tingle go figure maybe it works different for people who don't have feet issues . and as we all know it effects people different , I was taking vicodin and I was getting sick to almost throwing up  and dizzy , but yet Percocet seems fine, but like I said I would try anything that works but its a horrible pain for sure!
I endend up getting charcot foot or I should say ankle from the nerve damage and just pray you don't get that man! I had 6 different casts on for 5 months and now I am in a crow boot which is basically a removable cast , and the swelling is crazy I couldn't put a shoe on if I wanted to.
and yes I just applied enough is enough and sometimes you gotta swallow your pride man if you know what I mean.
and yes I did do the introduce thing when I signed up , this is a great site to find information out and it also is scary to read some of the stories , so I been off and on so I don't get all upset , its a hard time for me and I never thought id be going through all of this .
your from pa yes?