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  #131 (permalink)  
Old 07-26-2002, 06:43 PM
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Print out this thread and take it to those blanky blank ppl who think its just soreness and stiffness. It takes all I've got to get through 8 hours a day. I come home and collapse. You go girl. Get them and get them good for all of us.
  #132 (permalink)  
Old 07-26-2002, 09:44 PM
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Fibromyalgia, etc........

I was doing some work in our home office and decided to check my email one last time, and noticed there were some more posts to this ever-growing discussion!!

Lifestar, do NOT let the Disability Examiner people get to you. Remember one thing: who pays them? Disability, of course! So they are going to blow you off, girl. Also, not being nosey, but if you're rather young (as in under 45-50) you will have a harder time of it, especially under 45. I know -- I began the fight at age 42 and won at age 46-1/2. My attorney told me to not let whatever the examiners said in their reports (or oral testimonies at trial) get to me, or it would absolutely tear me up with stress and anger. Just let it go and let the attorney handle it. Keep very careful written notes on your own; i.e., perhaps a daily or weekly journal of meds, doctor visits, symptoms, what aggravates your physical (and emotional) well-being, things of that nature. I kept one in the computer and every few months printed it out with a cover letter to my attorney. Keep the attorney informed!! If you are in doubt about the attorney's competence, get some referrals. That's how I got my attorney -- a lady who came to job share with me just before I filed was considering filing for the same things I had going on. Also, I had worked for attorneys for years, but never disability. Anyway, she referred me to her attorney and the rest is history. Patience!! I know it is extremely frustrating, but do everything in your power to be frugal with $$ and patient until you win your case. Do not be surprised if you lose the first time and have to appeal it. This is standard practice in the disability "mill" according to many sources. So expect delays and just keep yourself calm and as healthy as possible. And make sure your medical records are being kept well; i.e., good, descriptive language. You know, you are entitled to request a copy of them. You may have to pay a set fee per page, but sometimes it is worth it. Before you request them if you want to do that, FIRST check with your attorney to see if he's already done that. Then, you can simply borrow them from his office and go to a 5 cent copy place.

Sorry this is so long!! I hope, though, Lifestar, that this info will help you. Anytime you want to vent on me, please feel free to do so. You can email me (and anyone else too for that matter) at [email protected]. I'm always willing to help if I can.

Babs, I know exactly what you're saying about waking up wondering who beat you up with a baseball bat during the night! This is partly because of the disease process, and partly because fibromyalgia interferes with our deep, or REM, sleep (where you have good quality dreaming). I read a study on this a few years ago and cannot remember the reason why nor the source of this info, but my doctors I have seen since that report was done have all concurred. Even the disability law judge and the examiners did! So it is real. So is the "fog" we experience, the lack of coordination, vision and hearing disturbances, etc.

Please, let's all be as thankful as we can that most of us are not crippled, totally bedridden or in wheelchairs all the time!! Do not give up, and keep moving, even if it's just baby steps. Stretch -- it does wonders! Sure, it will hurt at first but you will really feel better for it. Anything worthwhile takes time and perseverance.

You know, I am certain that God allowed these illnesses into my life because of the type of person I was before. I was a typical Type A, a real bitch if you will, in many areas! Very perfectionistic and selfish. This has taken the focus off of myself gradually and made me slow down, appreciate what I can do and what we do have. No, I am not Little Mary Sunshine!! I still get pretty cranky when I'm exhausted or in more pain than usual. But I am slowly learning to deal with it.

Also, for those with weight problems, please do everything in your power to lose extra weight. I didn't have much, but the 10 pounds I did lose made a big difference. (I am sure that small amount is because I am very small-boned, so it would be like a larger person losing 25 or so pounds.) It is definitely easier on the body -- I don't ache as much when I am on my feet for very long. Sure, it still hurts, but as long as I dress in comfy, cushy shoes (and there's some real cute ones out there, too, so we don't have to look outdated!) and I take it slow, I can still do some shopping trips.

Sorry about this being so long, but I really do want to help and encourage each one of you that's participating in this discussion. We have not and do not have an easy path, but we can do it! And one of the best resources we have are our friends, whether on line or ones that live close by.

I'm going to turn in for the night, but I'll be praying and thinking of all of you as I pray.

Carie A., Oklahoma City
  #133 (permalink)  
Old 07-27-2002, 07:08 AM
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According to the SSA you have to be able to earn a "livable" wage. If you can only "answer those phones" 31/2 hours per week, that does not constitute a "livable wage".

So yes, I can answer a phone I can type I can sit, stand walk, talk, drive read...but for SHORT PERIODS of time. That won't earn me a livable wage....even if someone would WANT to hire me for 45 minutes twice-a-day!

I have trouble with my memory ( was fired from the last job because it took me 2 hours to recall where I had misplaced the day's receipts!!!...<they were on the boss's desk, under his coffee cup>...)

And then what about the days we CAN"T get out of bed? What employer pays us or preserves our jobs on THOSE days?

I wen't from earning $65,000 to $2,800 a year...that's not livable to me. I have paid into this disability fund my entire working life, and now my children and I need to collect.

It has been a VERY difficult ego-shift for me to even CONSIDER the lable "disability" could apply to me in any way, shape or form, but stand in line at a food pantry or a holiday toy give-away, and you begin to realize that pride goeth befor a fall..a BIG fall. I will choose the lable for myself to spare my children far uglier ones.

Viva La Revolution!
  #134 (permalink)  
Old 07-27-2002, 03:30 PM
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Fibro Myaglia

Hello Janet and family,

I have several things physically wrong with me, too. Not really sure what they are. I am on disability presently, and for now I can not work. Well, not very few hours; if any, which makes me really sad. I can not seem to find out what is the real problem and it truely is driving me crazy I have been on antibiotics and steriods for everything the doctors didn't know I have or had. Now, I am paying for it with these disability troubles. Seems the insuance companies have more control then the doctors do which is very sad. I am tried all the time. Which makes me :mad:
I hope your able to find some relief.

Best wishes to you. Keep up your

Smiles. ; bye now, Cheryl
Sometimes when you think your all alone.

Remember, God loves each and everyone of his children.
So your never alone in my eyes either.
  #135 (permalink)  
Old 07-27-2002, 05:07 PM
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Hi Carie,
Sorry it took me so long to answer your question about the books by Dr. Crook on yeast,but I wasn't able to get back on here till now..I saw Dr. Crook on a tv show talking about how yeast affects so many parts of our bodies and how it is a real problem for people with autoimmune diseases.Especially CFS, Fibro,and other debilitating diseases. He has a web site but I can't remember right now what it's called.I did a search for The Yeast Connection and found it. He has his books for sale on his site but I found them cheaper from Swanson's Vitamins. If you're not familiar with that company just go to
I ordered the Yeast Connection Handbook and The YC Cookbook..Both are very interesting books.I hope this info will help.I also did a search for candida and found a lot of info on yeast.

I hope everyone has a restful night..God bless you..
  #136 (permalink)  
Old 07-28-2002, 01:38 PM
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From my own experience I will share that it takes time and patience as well as a good lawyer to finally get your disability claim accepted. I think I went throught the system 5 times before I finally got mine. I got a lawyer and that made all hte diference in the world. There are lawyers who specialize in SSI.

You my find that they follow you or set n a car accross the street form your home and watch you. They may even take pictures of you doing thins outside. When my husband was going through it he was setting out side and our grandaughter came over and wnated on his lap so he lifted her up. That was in the report - if he could lift her themn he wasn't in as much pain as he said according to them. They must not have grandchildren.

I have been in so much pain lately that I feel like I am physically going to fall apart. Don't think there is a spot oon my body that doesn't hurt. There is so much that needs to be done around here but I have no energy to tackle anything. No one around here truely understands what it is like. Sorry I am dumping on all of you. I intended to come in and help but now I am complaining that seems to be what I do so often. I''m tired of feelinglike this. And getting no where in my life. I had to turn my bills over to our oldest daughter to take care of because of my brain fog and messing up the checking assount big time more than once lately.
I fel useless !!!!!!!!!!!


A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that gentle hands will take and sift it, keep what is worth keeping and, with a breath of kindness, blow the rest away.
  #137 (permalink)  
Old 07-28-2002, 01:49 PM
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I'm sorry you are having a bad time of it here lately but don't give up. Don't let the pain win. Just hold on a few more days and maybe the pain won't be so great. Here is hoping you have a better tomorrow.
  #138 (permalink)  
Old 07-28-2002, 04:13 PM
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Hello Stitcher45,

Sorry you are having a bad time with pain, I too have been having a hard time and I know what you are going through.
It is a hard and difficult path we walk, and some days we can skip and other days we need to slow to a snails pace. I think what I hate the most is when it hits you all of a in the middle of the night!:mad: I spend more time up then sleeping last night and it does seem not to be relenting!!! What do you do when you are in a flare up?

Take Care

  #139 (permalink)  
Old 07-28-2002, 04:13 PM
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Sticher, I understand how you feel, and I don't mind your complaints, because we're in this thing together, all of us. I appreciate your words of support, and I hear what you are saying.

I was just so angry to read the initial letter from SSA. But just on it's heals my lawyer has filed the appeal, and I'm sure everything will start to come together.

There are good times and bad times and I'm just having a bad time of things now. Things with my husband hit a rough spot, and summer with the kids has been stressful because it is the first summer that I'm not working at that summer camp job, so they're not at the camp for the first time since they were little.

Thet're bored and lonely and I'm not well enough to take them for picnics or to the beach or anything.... It's been kind of rough.

So I understand.

I've kind of lost the wind to my sails too. I hope you are feeling better today. Take care.
  #140 (permalink)  
Old 07-28-2002, 04:41 PM
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Flare up

I've been having a very bad flare up, too, and it's all because of stress. Both my son and son in law are out of work and I am having to try to keep up my job in order to help support 3 households. I need to quit so bad but I can't. Then, my friend, I use that term very loosly, whom I got a job for, went to the biggest boss and complained to him that I wasn't doing my job right. Well, before he (and she) both left last week for vacation which left me to do his job and hers, too along with mine, he ripped me a new (you know what). Then he told me he needed to make sure I was there at work 100% while he was gone and when he came back (which is tomorrow) we'd discuss my new job description. How's that for stress, ladies? I can't quit. I just have to put up with this crap after 14 years of loyalty and hard work. They both know I have fms and recently diagnosed with copd. Wish me luck tomorrow. I just pray for the strength to accept whatever it is they are gonna deal out to me so I can keep my job.

Of course I could do what my "friend" did and tell him everything she has done wrong but that would make me no better than she is and I refuse to be that way. This is the second time she has rolled over me. I forgive her for what she has done, but I will no longer consider her a friend. I figure one of these days, she will pay for what she has done to me and the others she has harmed.
She will either ask for forgiveness to the higher being or not. It's not for me to interfere or judge but to forgive which I am working real hard to do. I do feel sorry for her for being that type of person. It must be very lonely and bitter world she lives in.

On a different subject, does anyone else feel like the bottom of their feet are bruised when they get up in the morning? That always surprises me when I get up in the morning. I know I will hurt from head to toe but it always amazes me that my feet can hurt that much.

Guess I'd best sign off and take my meds and head for bed. Here is hoping your day will be as normal as possible for ppl like us as it can be. I wish for some sunshine to warm your aching body and a gentle breeze to help move you through your day.
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