Him and his mom are both after me for a few things, and they WON'T understand when i try to explain to them. Can you all please help me?

To refresh you....I have TOS in my left side, and rsd in both hands, my right arm, right shoulder, right chest area (exacerbated by the right side TOS decompression surgery).

I'm currently working full time (with the help of duragesic patches changed every 2 days, percocet every 8 hours, topamax at night, magnesium every night for spasms, effexor for the burning pain, and other stuff I can't think of right now), but the office is VERY slow, and my boss VERY tolerant. I've been here 9 years, he's like a second father to me. Most of my typing is on the net, so it's very slow paced. I CAN do this! And, my pain doc says that ppl who work, normally do BETTER, so I don't WANT to stop working. Although, yes, by the time I get home, after the long work day, the long drive, etc, I do hurt like H - E - Double toothpicks and generally can't do anything AT home - but I'm working. And that's a GOOD thing, right?

But...these two are trying desperately to get me to file for disability. Their "thinking" is that, even though I'm working, since it takes so long to get, I should "start the process now and at least get it dated." But I don't understand that. I mean, we KNOW I'll be turned down, right? And then, they say to resubmit it and just KEEP resubmitting it (SO's mom used to work at social services, and if she had a client who should have been receiving disability, that's what she would do is just keep resubing it until it was approved). Cuz their thinking is that "one day" I won't be able to work at all, and at least the process would have been started. Does that even make SENSE to you guys/girls?????

Secondly, they want me to go to the mayo clinic, to try and find someone who can help me better. Now...I keep trying to tell them I'm not as bad off as MANY other people are. My RSD is contained in my upper extremeties, hasn't started to spread anywhere else, is controlled well enough by my pain doc that I can at least get my **** out of bed, and make it to work, get thru the day, and yes, I may be in PAIN, but I'm not as bad off as many of, say, you guys are. I hurt like he!!, but I am VERY sure, having heard so many stories, that I could be worse. So, I don't believe the mayo clinic is for me. Plus, you have to be REFERRED to the mayo clinic, right? And isnt that place for the "lost causes" that 25 other doctors can't help? My SO and his mom say I've already seen many doctors, but that was mostly for my TOS, and not for the RSD. My RSD was dx'd RIGHT away. I KNOW I have TOS, that's been dx'd...I just can't do anything about it except have the surgery on my LEFT side...but I won't cuz the right side surgery didn't go so well, and also made my RSD much worse. So, I'm NOT going to thru with the surgery on that side.

Anyway, neither one of them will listen to me. They want to know what we can do to "make me better." I tell them NOTHING can be done. There is no cure for this. It's just "pain control" at this point. They said my pain ISN'T being controlled. I tell them we can't expect me to have NO PAIN....just TOLERABLE pain. And that's what we're working towards. They say but I cry in pain every day. I say yes, after WORKING AND DRIVING, or doing too much at HOME, not when I've spent the entire day relaxing though. Not when there isn't a "front" moving in. Not when the temp is "just right." LOL! Okay, so there aren't many days I DON'T cry. But sometimes thosse are PITY TEARS! I can't go to the mayo clinic. I can't file for disability. But they DON'T understand. They just don't. Yeah, I may hurt. But it could be worse. Right now, I think I'm tolerable....but obviously THEY DON'T think I am. Maybe THEY can't tolerate me. LOL!

Or do they, and I'M the one who doesn't?

I'm tired of battling with them. Is there a website, or soemthing, that will back up what I'm saying, or what THEY are saying??? Something to prove one side or the other, or even BOTH of our points????

It seems I battle this at least twice a week, and it's tiring and frustrating and I don't want to battle it anymore.

Well - I kind of side with them-to a point - don't shoot me now- LOL

I'm thinking they just want you to feel better, maybe not "fixed" but as good as you can feel.

And the working at a desk postures and driving that far is a major flare cause for TOS . {could you move closer to your work??}

But if you like your job -moving closer might be a good compromise or working every other day and use the day off to do your rehab/rest/ recuperate??

I don't know the ins and out of ssi or ssdi -or how "disabled" you would have to be to be approved.

I can totally understand you being sick of going to doctors I didn't need to go to very many but I got tired of the circles and repeating things all the time.

I guess I don't have any websites or links - I did post some good video links on the TOS forum - posture and exercises for women and some other deep tissue massage video {upper body}.

Are you able to do/get any body work or deep massage or other therapy for maintenance of the TOS? It might help if it doesn't aggravate the RSD {and if it's done properly}.

LOL! I won't shoot you! I asked for it. LOL!

I won't move closer to work cuz I LOVE BOTH...my home and my job. I live in the country, work in the (lower yucky) city, way too close to detroit for comfort. LOL! I USED to live close to work, but moved away from it cuz of the um, er, class of ppl - didn't feel safe if you kwim. Now, I'm on a lovely 5 acre parcel in the country with wildlife around, a private lake, and my five puppies. I couldn't picture myself living anywhere else. and there's no way any other employer would tolerate me.

I do know they are right about working aggravating my condition. BOTH conditions. It does. And so does driving. Whch is why when I get home, I'm just way too sore. Which iswhy they see me crying so much. It IS too much to work. But....I can't live on the money ssdi will give me. And, I keep hearing my doctor say, "ppl do better when they work." We all know how important it is to "keep moving" those areas where we have rsd. And my areas happen to be the upper extremeties which is what I USE when I work.

so....that's what keeps me arguing with them.

Working every other day, I may as well go on ssdi....it would be even LESS money to work eod. Sigh....

Thank you. See...I didn't even shoot you!

Lisa,

First, I am sorry to hear that you have the stress of your SO and his mom on top of all of your pain. I don't have RSD, but I do have chronic pain from other sources, and stress always makes me flare, so I hope that you can relieve the stress to prevent/stop any type of stress flare you may be having.

I am on SSDI - social security disability. When I applied for disability, I applied at the state level, was approved for state disability within 30 days, and continued to get state disability while my SSDI application was being processed.

From what I know about SSDI and state benefits for disability, I am pretty sure that you can NOT apply for benefits if you are still working. In the world of disability benefits (state or federal) the word "disability" is a legal term that essentially means that your medical problems are severe enough to prevent you from working.

Yes, there are people who receive benefits and then go back to work at a part time job, but in order to continue to receive their benefits they must work minimum hours and the must stay below a certain income level - if they go above a certain income level (I believe it is in the $800 a month range) then their social secirity disability benefits can be stopped or suspended.

When you apply for federal disability benefits the Social Security Administration has a rule that says something like - you have to be unable to work now and you have to be expected to be unable to work for the next 12 months. Your doctor has to fill out paperwork that says you are unable to work now, and that he/she predicts that you will be unable to work for the next 12 (or more) months due to your medical condition(s). If you are still working right now, then no doctor can say that you are unable to work, and no doctor can predict that you will be unable to work for the next 12 months. (that info should be on the social security website somewhere).

So, if you are still working, and you are earning a living and supporting yourself, I don't believe that you would qualify for any type of disability benefits, and I believe that you would be denied right away. Not because of your medical conditions, because RSD and TOS are conditions that are disabling, but you would most likely get denied simply because you are still able to work and support yourself.

Social Security looks at the way your medical problems affect YOU. RSD and TOS can and do prevent other people from being able to work and RSD and TOS are disabling midical conditions. But for YOU personally, they have not caused a disability because you are still able to work. They may cause a disability in the future, but right now they do not prevent you from working.

You said something above about your SO's mother who said to "keep applying" if you get denied because it will eventually get approved??? and you will eventually need to be approved??
Well, honestly, I believe that if you do something like that you would get labeled as one of those "fakers" who are just looking for "free money" and trying to scam the system.... and then if/when you really can not work anymore and you really do need to apply for disability benefits they would probably disbelieve anything you tell them if they had already labeled you as one of those "fakers".

You aren't a faker. You have real medical issues that could lead to you needing disability benefits in the future. If you do become unable to work, you do not want to have any problems getting approved for the benefits.... and applying for benefits over and over again while you are still working could cause problems in the future if/when you really do need to apply due to your medical problems preventing you from being able to work.

Here - I found the SS difination of disability-
*bold added by me*
I found it here-
http://www.disabilitysecrets.com/page6-2.html


I hope that helps,
Liz

Oh I knew you wouldn't shoot me.
your place sounds beautiful.

Do they think you will get as much income if you got ss??

Or do they think the less $$ is a worthwhile trade off- if you would feel better?? a little bit better maybe- and not so tired when you get home?

you didn't say if you are doing some kind of massage or home care program to offset the desk/driving usage that flares the TOS?

you've heard of the usage bank account {Sharon Butler calls it that}
a simplified translation- useage = less in your stamina account and to rest/stretch will add to the account

One thing that totally hurt me was working part time, the reduction in hours until I applied for disability reduced me from about $1000 a month in 1997 until 2000 when I stopped work meant I only receive $600 a month.

I worked about a year part time and another few months reduced hours. This was averaged with my full time wages, so I had a major loss avg. my earnings.

I would ask an attorney what your options are. I never asked or had a doctor tell me I should apply for disability, but I was awarded first time no denial. I was off about three years by then.

If you are still working, you may not qualify, or have a good chance to win disability. The form is made out in a manner that if you can get up shower, dress and drive to work. If so, then benefits will be denied.

I don't think Family understands ssdi. It is a very difficult and many times lengthy process. At best; Having a doctor diagx you disabled, removed from work unable to perform your job duties, and receiving either w/c or a work policy of disability is a better start.

The other thing, there is a web site for hidden disabilities that has a lot of good information to share with family.
I spent three years waiting for my daughter to get better, to improve, it really hit me hard to realize this was as good as it got for her....

From there we just tried to salvage what is left and go day by day.

I think I mentioned once, her fiancee left as he was tired of waiting for the day she was "normal" again.It was different when she had surgery, did PT, tried to feel normal, but whole differnt story when he realized this IS it.

But, as I said I would call either soc sec and ask them, or consult an attorney about losses of benefits you may be doing by reduced work.
Hope you can sort it out,
Di

Wittesea,
One thing you are wrong about is if you are in the state of California, you CAN apply for state disability & for SSDI at the same time. State disability runs out here in 12 months. You can collect State Disability & SSDI at the same time. Neither the state nor SSDI care if you receive both. I received both legally.

And now I receive both SSDI & Long term disability.

Also there are only a handful of states that even offer state disability. I do not know if Michigan offers a state disability program. And at this time you can earn oup to $750 a month before SSDI starts to deduct your earnings from what you receive from SSDI. SSDI doesn't care how much you receive monthly from any type of disability program. I receive way over $750 from LTD. Now LTD deducts what I receive from SSDI from what they would normaly have to pay me.

Lisa,
You should do what you feel you should do. Try telling them that they are part of the major stress that you go thru each day & each week & maybe if they backed off then your stress level might go down thus lowering your pain levels. Worth a try.

DebbyV

In PA, the amount to earn and affected (state) SSA is different from the SSDI.

This year the SSDI earned income level was raised to $900 Jan 1st before it affects. I have worked all of 2006 and not received a gainful month, nor deemed medically improved. I earn about $560 a month, no SSA, only SSDI. I also receive Section 8 rental income for a trailer I rent.
Dianne

I just wanted to say hi and tell you that I am sorry that you are going through so much.

In Co. You can get both SSI and SSDI at the same time but they offset each other and they also have a state program that pays you money while you are fighting for either or both of these and the state just takes back the money they gave you out of the backpay from SSI or SSDI. I would check and see if either state offers that.

Also as far as the Mayo clinic, I have thought many of time about going there because of feeling like I don't have some of the right diagnoses. My PCP wants me to go to CA. though to a clinic there rather then the Mayo. He says they have a much better clinic then the Mayo. When I talked to the Mayo a few years ago also they told me that you have to have a diagnoses before you came there. That part just didn't sound right to me. Bill and I were planning on taking a trip this year so I could go to CA.

I can understand your family in a way because Bill had asked me many of time why someone couldn't do something for me. I have been to 100's of Drs., not lying and they have given me so many diagnoses I could honestly go down into the Guinness Book of Worlds Records and I still don't think they have hit on the right ones.

I think RSD is one that Drs. are just guessing at treatments. By reading on here and seeing how many different meds everyone is taking and different treatments is gives realization to that fact. It's not like other diseases where they have specific meds for it seems.

With TOS like you I have had the right side done and I have seen a major difference since my surgery. The fact is though I still have TOS on the right side even though I had the surgery. I don't have the numbness and tingling but I still know what I can and can't do with that right arm. The left needs fixing but I am so hesitant on getting that side done. I trust Dr. S completely but the surgery is so hard to heal from. I'm also taking my surgeries in order as I feel they are needed but that TOS surgery just keeps getting put off even though I have no doubt it is needed.

I think it is very hard for your family to except the fact that you are going to stay in so much pain and be in the shape you are in because they love you so much. It just bothered Bill like crazy that I couldn't get well. I just kept telling him that the Drs. were doing all they could do.

They see us cry so much because of the pain, run from Dr. to Dr. trying to help ourselves and seeing that we don't seem to be getting anywhere.

I have mixed feelings about people working with the TOS and the RSD because of what it does to a person. I honestly can't say it makes you worse but I do know that we are very limited to what we can do with the TOS and then to have the RSD mixed in makes it so much worse.

Also with the disablity you do have to have a letter from a Dr. saying you will be off work for a year. Nowadays it seems somewhat easier to get it then it did when I started fighting for mine and RSD I believe is now considered on the SS list for disablity as well as Fibro. Liz pretty much covered everything about SS. She is right on it. I do know that once you get on it you can work and make some money but at the time you try and get on it you can't be working. Bill was able to work and make 800. a month so he ran our antique store and he never had any problems with SS. He only kept it open so many days a week to keep under that guideline and to keep hisself going at the time.

It sounds like you are so happy being able to work that you are able to cope with the pain better then even your loved ones can. It also sounds like you are very angry at your family for pressuring you. I can understand that because I felt pressured just when Bill would ask me why no one could get me well. But it was just me being angry at the Drs. myself that made me feel that way.

I am blessed with a wonderful PCP that has stood by me for 16 years but I still get mad at him at times because I feel like I'm not getting anywhere with my health problems. I've bit his head off more then once. LOL We can't help but have some anger over the shape we are in I don't think. We see it more when we try to do the things we use to do and can't.

Anyway, I do hope that you can help them to understand your side and I hope that you will relax more with their feelings.

Have a good evening.
Ada

I did apply for state and SSDI at the same time - state was just approved faster.

Once SSDI was approved, my state continued for a few months, and then I asked them to discontinue the benefits because I was about to get married and I did not need the state anymore once I was married (Plus once I got married I would not qualify for state anymore anyway).

I never meant to imply that you can't do both together. A lot of people get both state and SSDI and have state Medicaid and federal Medicare at the same time.