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Medical Forum / Diseases and Disorders / Lupus / February 2004Hey Wesley!
How is the oxycodone working for your pain? Have you had the adrenal test yet or any other updates? Hugs, Maggie Hi Maggie, You know all that cooperation and communication that was supposed to take place between my three docs? Well, it hasn't happened. The adrenal test isn't going to happen now. The endocrinologist has decided since the visit that I don't need one now. What I think has happened is that he talked to the other doc in the group whom I fired, and he talked him out of it. That's OK, I'll just see Dr Hamrahian at the Cleveland Clinic this summer. The gastroenterologist *strongly* urged my nephrologist and transplant surgeon to get together to adjust or change the meds that are causing pancreatitis. That has not happened either. The oxycodone controls the pancreatitis pain when it is mild, but now that it is raging again, I am in trouble. As for the neuropathy pain, it is out of control. It has gone past the patch and the oxycodone. Now, that's a 25 mcg duragesic patch every other day, and 5 mg oxycodone in the AM and 10 mg at night. That should be enough to put down a pony, but as I sit here, I am having serious pain. Where in the hell do I go from here? Oh, and by the way, I do *not* qualify for social security disability because I have not worked enough. And I can't work because I am disabled. The old catch 22. I qualified based upon work hours back in 1987 when they cut me off. They do that three years after a transplant. You are considered healthy enough to work. When I contested, they said that I had enough ailments to qualify if they took them as a whole, but since they had to take them one by one, the answer was no. Now I'm sick enough to qualify, but I haven't worked enough. It is just lovely, isn't it? > How is the oxycodone working for your pain? > Have you had the adrenal test yet or any other updates? > > Hugs, > Maggie (((Wes))) Yes, I remember your doctors finally making a true effort to work together. I wouldn't blame you if you fired them all! You absolutely must have that test before going off of the prednisone like they want you to. I can't believe a doctor would do this! Did they limit the oxycodone to just 5mg during the day & 10mg at night? That doesn't sound like a very high dose at all. I'm thinking they may be testing the waters because of the patch & don't want you to overdose, but I would think your tolerance would be higher than that with the meds you've had to take. I just assumed you were on disability from the get-go, Wes. Simply because of your kidneys. I can't believe they actually denied you! I don't understand our system sometimes. A system that hands drug addicts benefits, but not our sick & fragile. It amazes me! And I do think drug addicts need that assistance, but so do people who, by sheer luck of the draw, are truly disabled! I am sorry you have to deal with so much all the time, Wes. You are an inspiration to many here & I know your life will inspire your children as well. They just may be the ones to change things in this "system" we have. I'm just so sorry you are in so much pain. I'll be praying for you & your family. And your doctors. Maggie > Where in the hell do I go from here? Oh, and by the way, I do *not* > qualify for social security disability because I have not worked > enough. And I can't work because I am disabled. The old catch 22. That's B.S.! I had an uncle who worked 3 DAYS out of his entire life who qualified for disability because he had gout (from too much drinking), asthma (from smoking too much), and some other problem (from drug abuse). All because he had a doctor who said "Hey this guy needs to be on disability." He got free schooling, free government money, discounted prescriptions, and he wasted his entire life. You need to get yourself a lawyer to help you get your SS disability. You deserve it. There is no way in hell that some lazy piece of sh** is more deserving than you! That is my opinion. Mel Hey Wes, I am someone who has been through the pain management clinic/doctors and everything related as well as having been on every pain med in the book and to me the dosage you are on is just not enough. I am relating it to what you have said in the past about the meds you were taking for pain and I think your tolerance level would be too high for that small a dosage to make a dent in your pain level. Talk to the doc who gave it to you and see if you can start upping it in 5's or 10's weekly if needed.... IMO you should be on at least 30 mg. if it is oxycontin, during the day and 10 at night... FWIW why don't you push the envelope and question your pain mang. doc.... at worst he can only say 'no'. Good luck Wes, hugs to you from me, Shelagh "Wesley" wrote in message | The oxycodone controls the pancreatitis pain when it is mild, but now | that it is raging again, I am in trouble. As for the neuropathy pain, [quoted text clipped - 3 lines] | down a pony, but as I sit here, I am having serious pain. | Where in the hell do I go from here? Hi Mel! I'm thinking your uncle was on SSI (Supplemental Security Income). He wouldn't have qualfied for SSD (Social Security Disability), because he wouldn't have had any work credits. Wes would qualify for SSI too, but only if his wife didn't work. They really can make a life miserable! I agree totally about the lawyer, but I also know the stress that would come with it. Maggie > Wes would qualify for SSI too, but only if his wife didn't work. They > really can make a life miserable! I agree totally about the lawyer, > but I also know the stress that would come with it. I wish we were creative lawyers. http://www.kidsource.com/nfpa/social.html A copy of the most recent W-2 form or if applicants have been self-employed, their federal tax return for the past year. If someone does not have all the above items, apply anyway. The people in the Social Security office can help obtain needed information. The disability must interfere with basic work related activities. The disability must prevent a person from doing any other type of work for which he or she is qualified. To qualify for SSDI, a person must have worked long enough and recently enough under Social Security. A person can earn a maximum of four work credits per year. The number of work credits needed to receive SSDI depends on when the disability started. So we lawyers tell Wes' wife (or a friend employer who is willing) to go through "her books" and realize she has not been remitting "credits" for Wes as a self-employed person working in her home (doing minor housework for 17 years), for which he is paid by "room and board" (not money). So she remits the amount of credits required and any back interest. Now, in theory, he's on the record of having enough credits for the period required. Now we lawyers find a specialist who reviews all of Wes' medical files and also an expert to do a Functional Capacity Evaluation and disability evaluation, year by year, since 1987 to prove that he was disabled as of 1987 as defined by SSD. Then we put the claim in, bury them with paperwork (medical documentation) and appeals. J It's a fabulous idea in theory, J! : ) But here's where they'd get him: He would then have to prove how he could do "his job" for the past 16+ years, but not now. If he's qualified as an at home parent & he has received money for it, then he has to prove he can no longer do it. He's right back where he was. It could work, but see, then they'd have to hire a nanny to take care of the kids to prove it. And that could possibly take at least 2 years. What makes me so mad, is that they don't stop the need for work credits upon the first application for SSDI & hold them as they are until all appeals have been exhausted. I think they do this to a certain extent, but it's so unfair that they are now saying he doesn't have the work credits. I am wondering if a lawyer could fight that? Say that he should be considered on his original claim, but again, it's so much to go through & Wes would have to decide if the stress is worth it to him at this point. This is the worst failure of our system! I'm in knots just thinking about it & I can't even imagine how stressful it would be to go through it. Hugs, Maggie > It's a fabulous idea in theory, J! : ) > [quoted text clipped - 22 lines] > Hugs, > Maggie I had a lawyer in 1992, and we took it all the way up to the judge. The work credits were still valid at the time. He was very nice and was leaning my way, but the work specialist who was also in the room torpedoed me by saying that since I was in school, that I could probably do some type of sedentary work. I totally agreed, since that was my intention at the time, but just wanted disability until I finished the training program (Federal program for computer programming for *disabled* people--this just gets more silly all the time) and got a job. Denied! That was when the judge told me that I had enough maladies to be considered disabled, provided he could lump them all together, which he couldn't. This just gets funnier every time I tell it! We could (and should) have taken it one step further, but the lawyer said no, no chance in the world. I tried again when my retina detached in 1996, but they just laughed me out of the building. I had enough illnesses to qualify, no problem, but the work credits had expired. My state representative has written my congressman a letter to see if there is anything that can be done, any kind of little known loophole, but I do not hold out any hope. As for going back to the original claim, I have tried, but not one lawyer I spoke to would even touch it. I even spoke with a firm in Chicago, and the lawer there told me there would be a sliver of hope, but that I would need to talk to every doctor who treated me and convince them to write a letter. Just not possible. > I had a lawyer in 1992, and we took it all the way up to the judge. > The work credits were still valid at the time. He was very nice and [quoted text clipped - 24 lines] > every doctor who treated me and convince them to write a letter. Just > not possible. I had state rep web pages up this morning but go so furious I could not post. All that money and power in your one post and nobody has a clue how to help you. re: Sliver of hope: Was he just saying that to "reel you in"? If not (if there's some basis), 1) assemble clean readable copies of all relevant medical nformation by date. 2) summarize by date (typed on paper) 3) functional assessment for just the home part (nebber mind work - it's clear you are too sick to even go through one of those). Can you and/or your wife handle the above? 4) assemble lists of doctors who need to be contacted, double check their current locations and addresses. This one you might need help with if they've moved or retired. 5) tell the !!$#^%!# state rep to use some of his resources (photocopying machines, staff etc) to copy as many copies as required. Make up a cover letter "due to some complications and some dropping the ball in 1987"....XXX - state rep asking doctors to review the package and write up a letter with a statement as to your disabiltiy as of 1987. Courier them out to each doctor with RSVP and send doctor's bill to State Representative. One hour's billing only. You promise to repay that if your disability and backpay is approved. 6) Some of us get on the butt of the state rep (email motivations). Okay Maggie and Wes, where's the glitch? J LOL! No glitches here, J. Just a lot of work & Excellent suggestions! : ) Have you ever considered going to a law school around May, Wes. Get you one of them law students that are just gushing with the idea of actually helping people in need. Get to them before the system does. You could sit outside in your car & look for the students to file out--check for gold Rolex watches & fancy sports cars. These are the ones that may have watched their lawyer parents bilk the system & now these kids are required to do the same. Or, at least their parents think so. They may jump at the chance to help someone pro bono! You could also summarize your case, along with a pic of the family maybe & copy about 1000 of them & recruit friends to crash the commencement ceremony. : ) J/K Just be there in the vicinity when they start filing out in cars or maybe take them & stick them all over the school a couple of days before graduation. A law student may very well work harder than every lawyer you've contacted...combined! They may even team up together & kick some SSA butt! Hugs, Maggie > LOL! No glitches here, J. Just a lot of work & > Excellent suggestions! : ) [quoted text clipped - 14 lines] > contacted...combined! They may even team up together & kick some SSA > butt! Wouldn't the Rolex bunch be spoiled and want to start fleecing right away ? and not want to do pro bono? I suppose /maybe a promise of mention of their name & location on newsgroup? And a poorer student would no doubt be in a hurry to start the $$ rolling in to pay off University debts. Not arguing, just trying to do the "devils advocate" thing. Sounds like work just even standing there for a person who has kids to manage and attacks of pancreatitis and neuropathy? J Yes, I think the Rolex could mean that they were money hungry & daddy already made them a partner, but they may also see a big name for themselves, if they win. They would be the ones that didn't necessarily need the money, unless they stole the Rolex. I think if a bunch of them got together & passed out fliers in the next month or so, with grad day coming, it would be the easiest way to get someone willing. He should be honest about the other lawyers not willing to take the case. This is actually what would drive some to do it, I think. Knowing they could do it when nobody else could or would. And he should explain that it would be pro bono unless he wins back pay. He should also put in the story about the state rep as I think that would be an extra lure for the politically minded. If there's an Office Max in his area, they often put out Copymax coupons in their paper & he could probably get a good deal. There's also copiers that take as little as 5¢ per copy, which would be better than paying for the printer ink, I think. Or, like you said. Make his rep do it. ; ) He may get one that's poor & willing or one that's rich & stubborn. He may get a whole team & he may get none. But none is what he has now, so at least it couldn't get any worse? I figured Wes could just sit in a lawn chair & wait for passerby's & a few other's could take the doors & parking lots. Hugs, Maggie > Yes, I think the Rolex could mean that they were money hungry & daddy > already made them a partner, but they may also see a big name for [quoted text clipped - 20 lines] > lawn chair & wait for passerby's & a few other's could take the doors & > parking lots. I see your points, put a human face on it (as they say), it could even be a wheelchair. And fliers are cheaper than what I thought you meant (glossy photos) or colour photocopies. Call out the press, "human interest" story, get things moving. However, I'm not getting vibes from Wes that he's in any way enthused about any of our ideas. But thanks for helping with the brain-storming session. Hugs Maggie J Hi J! I think you & I, as well as many others here, are just so disgusted at the whole thing that we wanted to see him get what's owed to him. I'm sure if Wes wasn't in so much pain right now, he'd be more willing to fight. It's just not an easy thing to think about, much less do & the stress.....! I hope you know that we don't expect you to follow any of our crazy antics, Wes. : ) We are just mad at the government & wish we could string them to a ceiling fan by their feet & force-feed them Ex-lax! Hugs4uBoth, Maggie--my angel wings are at the cleaners. Hello Maggie and J, I love your ideas, and if I were feeling better, I think I would head down to Pitt or Duquesne law school and do just what you both suggested. I'm not done yet, however. My father's very good buddy is the uncle of the state representative whom I mentioned before. Since I have not heard from the rep, my dad is going to call his friend, and he is going to ride Mr. Rep until he comes up with that letter. I just have to sign it, and it will be sent to my congressman. We'll just have to wait to see what happens. I will be sure to let everyone know about any results. Thanks so much! Hugs, Wes > Hi J! > [quoted text clipped - 11 lines] > Hugs4uBoth, > Maggie--my angel wings are at the cleaners. Well that cheered me up seeing the "I'm not done yet" Keeping on fighting Wes, Did you see this one? http://nosscr.org/ (no idea if it's helpful for your type of SSD or SSDI or not, hey, I'm collecting whatever I find for anyone here. Hugs J > Hello Maggie and J, > [quoted text clipped - 13 lines] > > Wes oops J, you said room & board, not money. : ) That's what work credits are, in a way. Money has to be involved because that's what they base your Social Security tax on. So, a monetary figure would have to be given to SS & it would be taxed accordingly. His wife/willing friend/Wes would then have to pay that tax & I don't even know if they'd penalize anyone for not paying 16-17 years of taxes sooner. It's still a fab idea...in theory Hugs, Maggie > oops J, you said room & board, not money. : ) > [quoted text clipped - 4 lines] > tax & I don't even know if they'd penalize anyone for not paying 16-17 > years of taxes sooner. Of course they would and long before the battle with SSD even started. Would they accept a payment plan even if it was a paltry monthly amount or garnishee her wages? J Of course they would and long before the battle with SSD even started. Would they accept a payment plan even if it was a paltry monthly amount or garnishee her wages? >>>>>>>>>>>>>>>>><<<<<<<<<<<<<<<<<<<<< The only problem is that he'd have to prove that he could no longer do this type of work caring for the kids. A nanny would need to be hired etc.. Another thing is, when the IRS caught wind of it, they'd be paying back taxes as well & some serious penalties. It's too late for them to do that now. I'm actually not even sure they would be allowed to do that, simply because they're married & probably file taxes as a married couple. Even if they planned to pay both of these agency's (IRS & SSA), then they have to promise to pay their state & local taxes too. It would be a mess, because she could've deducted his income from her taxes (possibly), but didn't. The IRS will not care about that part. They (the entire government) could actually end up charging them with fraud if it got out of hand. However, if they can do this legally, beginning soon, it could get him the credits he needs. If he can't get his disability, then doing this could make retirement much nicer or give him a future SSDI. She could deduct what she pays him from her taxes, they file married/separate taxes & pay the Soc Sec, state taxes, etc. & then Wes could deduct all of his medical expenses from his. Whether this is legal, I just don't know for sure. This could be one reason our prison's are overflowing. Hugs, Maggie Hi Maggie, His entire situation completely pissed me off. That's why I went off and ranted the way I did yesterday. I can't stand to see people who are in desperate need of SSD being snubbed by the gov. while other take advantage of the system. This particular uncle is no longer with us (for reasons I'd rather not discuss), but I'm still bitter about it because there was a time when my condition was worsening to the point where I may have needed to go on SSI and SSD, but would not have qualified because I was still in school and working parttime. Life is just not fair sometimes and I'm still not entirely sure how he got around the system the way he did. I don't even think he knew. Mel > Hi Mel! > [quoted text clipped - 7 lines] > > Maggie Hi Mel! I know. It made me go: rrrAAAArrrrghhhhh! Still does! Did you know that a completely healthy & strong individual with an IQ of say, 70, would automatically qualify for SSDI? Whereas a paraplegic with an IQ of 140, may only have a snowballs chance in Hades of getting disability?! The system is so cruel! There's a lot of people here that have fought the battle & won, but the stress of it actually made them worse healthwise. Other's are still fighting & just getting sicker. It's like they just automatically deny certain claims, thinking they'll just give up & not fight the decision... Hugs, Maggie > Where in the hell do I go from here? Oh, and by the way, I do *not* > qualify for social security disability because I have not worked [quoted text clipped - 7 lines] > the answer was no. Now I'm sick enough to qualify, but I haven't > worked enough. It is just lovely, isn't it? lawyer and human rights? J PS My brother's in similar position, not being helped by doctors, trying to get well enough to go back to work, if only long enough to keep his disability credits going, if nobody will help him so that he has enough credits to claim disability. Crazy isn't it? Stuck between a rock and a hard place. Hi Wes, I am sorry that I don't have anything to offer in the way of suggestions. I wanted to tell you that I feel so sorry for the runaround you get. I know the frustration of that. You get your hopes up and then everything is dashed because doctors backtrack, or don't follow through. Warm hugs and kind thoughts for you. BJ-Sk. Canada > Hi Maggie, > [quoted text clipped - 33 lines] > > Hugs, > > Maggie Wes, no magic words to share - just my concern and empathy. When I hear stories like yours, I wonder how people survive without a spouse or other family to help them. My thoughts are with you. Gretchen > Wes, no magic words to share - just my concern and empathy. When I > hear stories like yours, I wonder how people survive without a spouse > or other family to help them. My thoughts are with you. > > Gretchen Hi Gretchen, It is very simple. Were it not for Kip, I would not be here right now. |
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