Daily Whine and Shine - October 17, 2007

I should be trying to get my car fixed. But I awoke with IBS problems. I think I've taken enough immodium now to fix that. And my head was foggy. That's just about cleared. I have pains in my neck, shoulders, lower back, both knees and both hips. Nothing really out of the ordinary there.

Marilyn, my stepdad just went through an ordeal that lasted about 5 years trying to get approved for 100% disability through the VA, he finally was approved about 2 weeks ago, but not before losing everything he had because he couldn't work. Its really sad that it takes them that long.

Marilyn - I don't have anything going on right now myself, physically...however, I wanted to let you know that I will keep you in my thoughts and prayers.

You're right, Phaedra, it is sad. My mom worked for the VA in the legal department. She watched as guys who should have been approved had to fight. And she hated it when guys who had no business with disability got it. Her neighbor in St. Pete was one of those. He was in the service for 3 years and claimed that the bad foods gave him diabetes. The fact that man never took care of his health after getting out all those years ago never came into it. I feel sorry for the man that he ended up having to have his legs amputated at the knees. But I question his getting 100% for a "service connected" disability. And the government bought him a house and a van equipped to drive...while guys who had real "service connected" disabilities have to wait or are denied. Grrr.

Thanks, Tara!

I'm sorry to hear about your problems with SS. I really hope that you can get approved this time!

I like that you have put this on here and you are right we do need a place to voice how we are doing day to day and to know someone is hearing us. People may not always understand us but as you stated a long time ago it is nice to know we have support in our daily achs and pains because lord knows I am sick of feeling like I have no one to lean on that understands when i am feeling lousy as I have been feeling the past few months. Even my kidnies have started in again bleeding and has my neice who helps out with me scared out of her wits. she seems to think it is something she has done wrong but that is not the case and I know it. Thanks for posting this here.

I hope you get approved.I have dealt with an "invisible" illness. for a lot of years now,Lupus. It is hard enough,just dealing with day to day living,much less having to go through fighting for disability.Unless a person has one of these illnesses,it is very hard to explain it to others.I actually had a family member look at me once and say,"how can you be fine one minute,and terribly sick,the next?"As if I was able to control it.I told him if I knew the answer to that,I wouldn`t be sick.

You have my sympathy & understanding Marilyn. My oldest son has MS and it took him 12 years to get disability. My sister got hurt at work and she had to go to court several times before she finally got it. She is still in constant pain with occasional trips to the ER.
They don't seem to realize that all that worry & strain only make the physical condition worse.

You're right, Nancy. Worry and stress does make things worse. I've known a few folks with invisible illnesses who almost have complete turn-arounds after finally being given disability income and Medicare. Well, of course! They no longer have to worry about whether or not they can pay the bills or see doctors!

Linda, have you been to the site butyoudontlooksick.com? There's a spoon theory there that was written by someone with Lupus. It applies to anyone with an invisible illness that is draining.

I feel for you, my fibro friend! I have just had my application for disability turned down. I am now entering the appeal process where I understand they basically review what the last guy looked at and hope he/she feels okay about over-riding a colleague's decision. My attorney seemed very disappointed as I have all sorts of medical test results that I submitted proving numerous debilitating health issues. I have 3 ruptured disks in my neck that make it difficult to hold my own head up for any length of time. Because of that injury, which is inoperable, I have no muscle control in my right arm (I submitted MRI's of my cervical spine, and EEG results showing nerve damage that prevents signals from properly reaching muscles.) The test results show, and the doctor's report states that I have "chronic, severe radiculopathy" in my right arm, moderate in my left leg and mild to moderate in my right leg. If a signal does not go through properly to one of my legs, I will just fall over. I have IBS that could also be a result of the spinal injury and nerve damage or it could be one of the multiple symptoms one experiences in connection to fibromyalgia. I have met all the requirements for the diagnosis of fibro - almost every one of the 18 trigger points are responsive to pressure. The general consensus is that 11 out of 18 wll due while I have 17 out of 18. If there is a bad day weather-wise, my neck swells to the point of cutting off the major blood vessel to my brain and I loose time, pass out, can't speak a proper sentence, forget the names of people I have lived with for years, etc. I also have suffered with migraine syndrome for years. I have an MRI of the brain with a lesion attributed to migraine syndrome and an EEG that supports migraine syndrome also. I submitted those as well. I cannot take narcotics (I understand that many fibro sufferers are extremely sensitive to medications) so I am in constant pain.

They turned me down because "While you have migraine syndrome, it can be controled by medication," after evidence was submitted that I can't take the medication. They said that "While you do have a significant cervical spinal injury, you have full movement of your neck." The day I saw the orthopedist they sent me to, he only asked me to turn my head from side-to-side. It was incredibly painful, and the crunching sound and snapping sounds were clearly audible. It was, of course, a good day when I had full movement, painful though it was. Then he asked me to turn my hands over to display my palms. Again, my right arm shook like crazy and made all sorts of creaky, cracky noises, but I was able to turn it over however painfully. He asked me to raise both arms, and my right tricep (which now only has 10% of its function because of the lack of nerve connection - again displayed on test results by the most respected neuro-muscular specialist within 100 miles of here) was clearly in spasm. He ignored that and refused to look at my MRI/EEG results - against the rules apparantly for him to give any creedence to another physicians test result, though he performed none of his own. They don't recognize IBS as a disability - "It does not prevent you from working." Well; I suppose I could wear depends all the time, but I would put off all my coworkers with the nasty sounds and smells. I also don't think anyone wants an employee who is standing one moment and on the ground the next. All the reasons they gave for turning me down directly conflicted with all the hard medical evidence that was submitted.

In the meantime, I cannot afford my bills. My electricity was shut off earlier this week. My telephone is currently off. I am working with the mortgage company to avoid foreclosure. All this because I had the misfortune to suffer a debilitating injury. While all that money was being taken from every paycheck I ever got for almost 40 years to pay for this "insurance," I am being left to flounder and perhaps go under if things don't change soon. Thanks for letting me whine on.

Debra, I am so, so sorry. You didn't mention if you have an attorney. If not, it sounds like you need one. If you have not visited SocialSecurityDisabilityCoalition@groups.msn.com
please do.

Everyone! Sign the petition. See if there's any information there you can use.

SS didn't send me to any doctors, strangely enough. They did send me to a shrink - about 2 years ago. (Duh, things change?) At my hearing, I had a vocational expert who - when given all the facts of what I face, including the IBS (and yes, depends were suggested by the judge!), she admitted that there were no jobs that I could do. That still does not mean this judge will decide in my favor. In fact, since my psychologist and shrink had not sent their records, the judge held the hearing open. When they didn't get the information to him in his 30 day time period, he started asking for more records. Now he's wanting records from my chiropractor.

My own doctor, after seeing me for 2+ years and happily taking my money with each visit, refused to fill out any SS forms. She told me to see a rheumatologist for that. Perfect. I had 2 weeks to get some forms in and all the rheumotologists in the area have a waiting list of 3-6 months.

So many people give up. Is is any wonder????

If you haven't make a connection with Maria K. here, you should. She also has a wealth of information.

I like the title. I feel that some people are always complaining about everything in their life. I would like for them to be able to bring a little sunshine with them. Maybe then I could take them seriously enough to really listen. Thanks for presenting this.

Angela, it's not good that you've got blood in the urine again. Have you seen your doctor lately?

LaRue, you're right. Some people only complain. For the longest time, I didn't say much at all about what it's like to have fibromyalgia and chronic fatigue and everything else that goes along. But I think I do much better sharing life matters when I allow people to know that part of me too, because when they see that there's still joy in spite of pain and illness, it may offer hope.

Unfortunately, that was not the case with my SS hearing. Why in the world would my doctors and physical therapits think they had to put it in my permanent health records that I can smile in spite of pain???? Grrr. The judge, then, wondered if there was really pain.

I realize each and every day that, although I do have pains, there are others whose illnesses and disabilities are far worse than mine. I've shared before that I purposely visit the blog of a young woman who was born without arms and legs, a woman who is full of the joy of the Lord and shares it freely. I also receive a devotional from a man in his mid-30's who has been a in a wheelchair since high school or college and on a breathing device for almost as many years. Still, he has an awesome ministry - speaking (bless his heart, how difficult that must be) and his email devotions. He lives in a nursing home type place and has to have all of his physical needs cared for by someone else, and yet he shares the love of God.

Those are my examples. People I try to copy.

I have been several times to see a doctor and feel like the hospital is a revolving door the general practitiomner I go to is only working limited days in her office now and has stoped working in the hospital and took a leave of absance from there and the doictor she turned me over to when I had to go to the er last week said I had a kidney infection, Heck I already knew that anyway then he chalks it up to my allergies and a tuch of flue sent me home on meds I took them and got done and now the bloods back moms down after having suregery less than a week and a half ago from gal bladder surgery and so I am only up in my chair moving around if someones at the house to help with me and on weekends I am lucky if i am even up at all in my chair on sunday. My neice has flat refused to work weekends at all. So have no idea when I will see a doctror. I have a feeling as long as i am limited on the time im up in my chair anyway going to the doctors are not going to help my problem any way. But thats only my guess and drinking a lot while i am down is next to immpossable with my gastric reflux disorder. So I am in a mess right now. That why bewing here to talk about my agravations and know i am listened to helps me. The way the aide services are being with mom we cant even get anyone to fill in on weekends. But at least my moms guy is here Sundays to help mom with me most times.

Marilyn, I got hurt on the job and the work comp doctor had me go to Physical Therap7
and on the perscription he sent me to them with, it was written my neck, my lower back and my hip. Two weeks later I went back to work, still hurting every moment of every day. I went back to the comp doctor and he had me continue with the PT. I told him that my hip hurt and he told me that I had not told him about it at my first visit. I said "Yes I DID!" he said "No you did NOT" so if I had not told him, why did he have it written on the script??? Anyway I worked for a year in pain and tears almost every day. Work comp sent me to a shrink, I got a copy of his report saying I was of sound mind, but in constant pain, and I was able to handle my own affairs. I got a lawyer who sent me to a surgeon who took me out of work right then and there. He said he couldn't understand why that work comp doctor would have sent me back to work with my neck and back in the shape it was in. I found a sight that I could check up on that doctor, and low and behold, he had his surgeons licsese taken away because of malpractice suits DUHHHH!!! I gave the info to my lawyer and she was shocked to find out that info. She kept it for her records. I had to go to court to get Soc Sec. and I got a letter saying I would get back pay. I talked to a man in SS and he told me yes I would get it and he said "seventyfive" I thought gee I am going to get $75,000 !! NOT I got $75.00 as my back pay because I got money from work comp, money that was suppose to last my life time. HA HA HA HA!!! I guess if I went out of this country my $60,000 settlement from work comp would last me a lifetime, but here in the good old US of A NOT!! unless I kicked the bucket at a very early age. I live with constant pain 24/7 and I thank GOD that I am still alive, even if I hurt all the time. There are so many that do not have the ability to move around, eat, sleep (that is hard at times too when you turn over and all of a sudden your neck makes a snapping sound and your muscles go into spasams and you sit right up in bed and cry because it hurts so bad. And dread the thought of having to go to the ER for a shot to knock me out so the muscles will relax!) But I have my husband and my animals that keep me laughing during the day, and I have my daughter and son and their kids and even a great granddaughter that keep me going too. Sorry if this is too long and I know that when I get ticked, I mess up on my spelling and I don't bother to go back and correct it. I pray that all those that need to get on SS can get on it without being made to feel like a fool, a lier or have to get a lawyer to support them and get the SS for them. If I hadn't had my hubby, I would have been out on the streets or having to live with one of my kids. But I thank GOD that I have a wonderful family and friends. GOD BLESS YOU

Oh, Susan, I hate these stories. If you haven't been to the site I mentioned above to sign the petition to get things changed with SSD, I hope you will.

SocialSecurityDisabilityCoalition@groups.msn.com

I already know that if I get any back pay at all, the first money will go to the state of Texas for the worker's comp pay they paid me weekly for 10 months. Next, Michigan will be paid for the disability money they paid me for about 6 months. Possibly the food stamps too. Then my attorney gets his 25%. If there's anything left over, I'll need it to pay the medical bills that pile up.

Many people do end up no the streets because of this system. And you know what? They can't collect if they have no recent doctor's records. Something has to change.

In Texas, by the way, there's no such thing as getting settlements anymore from worker's comp. Because of that, it's almost impossible to get attorneys to help. My attorney in TX (for worker's comp) got $300 to set up my file and 25% of my weekly worker's comp check. Not worth doing much for. And he didn't. But without him, I would not have had that 10 months of income and treatments that I did get.

Now the SS judge is looking at those records as "gospel" and those worker's comp docs lied. One told me to my face - "off the record" that he knew for a fact that I would never work full time again, and probably not much part time either. On the record he said I had reached "maximum medicall improvement" and could go back to work light duty. Of course there was no light duty and that released my work place from having to hire me back. The money stopped at that point. And the SSD process started. And now it has been over 5 years since I was injured.

Well, I have arthritis in both knees and can barely walk. I can't even get up the four steps in my apartment building, good thing there's a ramp, and I sure can't walk up subway steps. I have to walk with a shopping cart in front of me when I go outside. My knees hurt but SSI said the were just a little stiff!!!??? Of course I was turned down in March of this year. I sent in the forms for an appeal and in September they sent me a letter saying that they received it and would contact me when I have to appear in front of a judge.

Hearing that people are turned down multiple times is really scaring me. How are people supposed to live if they can't work and the government thinks they are lying about their illness? I hope some of these judges and doctors that work for SSI and decide to turn people down are someday in the same predicament that we're in.

Oh yeah, I also wanted to say that they aske the same questions over and over again on the millions of forms I initially had to fill out. Does any body actually read the answers?

Good question, Sharon. Someone told me that they actually compare them to make sure you're still telling the same story. Grrr.

What happens depends on where you live and even on the particular judge you get. Where I live, there are 11 possible judges, I think. Two are quite favorable towards fibromyalgia, two are quite unfavorable and the rest are supposedly open and neutral. I got one of the supposedly open and neutral ones. We'll see, I guess.

Good luck Marilyn!!!
Not much else to add - it's all been said - Have you seen the lenghts of these comments???