It turns out that I am very healthy for my age, the only problem is that I can't get out of bed!
This is the first post I have made in any CFS Forum. I am just so ****** off.
I was diagnosed with Lymphoma (Cancer) in 2010. From the onset I told doctors that I wasn't as concerned with the cancer as I was with my fatigue. They said it's probably the cancer that's causing fatigue.
Well, I went through the Chemo and the Radiation. I am told that my cancer is in remission. (hooray) My wife, my family, my friends and I am happy about that. Problem is I still have extreme fatigue. I mean it's severe.
My primary doctor is very good, and I've seen several other doctors (specialist) referred by my primary. I have had three sleep studies and have been diagnosed with sleep apnea. I got the CPAP machine and it turns out it had no effect on my problem. Doctors actually said, if it's not working why add stress? Sleep is not restful and is not refreshing. Through personal research I have found that medical science doesn't really understand what causes and what cures this problem.
Other than my oncologist for cancer and my primary, I have seen so many other specialists that I can't even remember what you call them. My doctor wanted to eliminate even the remote possibility of any other problems that would contribute to my CFS. I know it sounds weird but with every new test I hoped they would find something so it could be cured. It turns out that I am very healthy for my age, the only problem is that I can't get out of bed. Also saw a shrink because I must be depressed.
Finally after a year and several months my primary concluded that I definitely have CFS. I had never heard of Chronic Fatigue Syndrome before.
I have been surviving on my savings and COBRA is not cheap. I filed for California Social Security Disability and figured with all the medical documentation that should be a slam dunk. Nope, they turned me down twice! Everyone I know was shocked. Especially when you think of all the people who get disability then go out golfing, boxing, and roofing.
So, I went to Binder and Binder, and we scheduled a disability hearing. They have really helped me put together an organized file. I have letters from my doctor stating that I indeed have CFS and another form of stupid questions and one of which confirmed that I am not a malingerer.
Well, tomorrow is my hearing. We'll see what happens.
It's just that this has been so stressful. As it is, it took me quite a long time to overcome the thoughts in my mind that all my friends and family must think that I am just a lazy slob. I even wondered if my doctor believed me. I was so relieved to find out that he had all along. Then I spoke with a good friend and told him how I felt. He told me that anyone who would think that is not a friend at all. He said that people who scam run around bragging about it. I realized quickly that he was right. Besides, I love working and made a lot more money working than I'll ever earn on disability.
Part of the problem is when I would explain my fatigue many people would tell me that they are tired too. But they are so far off. After all this time, I know that my circle of people understand that what I have is so much more and that every drop of energy that I use I pay for.
Like many CFS sufferers, often times I get up for a doctors appointment (or whatever), and I shave, take a shower, etc. and by the time I am putting on my shoes I am sapped. No energy left. None. Nada. Zero.
I have also noticed that my CFS has gotten worse as time has gone by. I used to have a few good days, then a few bad. Or a big crash for about a week and a half.
Now, I mostly suffer and maybe have a good day or two in almost a month. This sucks. And when I crash it's a hard crash.
And the Disability office declines me twice even though my medical records indicate that every doctor I have seen knows that I am suffering from fatigue and they feel bad they have no cures.
Well, tomorrow we'll see what they say.
I'm sorry for just rambling, I'm just so ****** off. I can't believe they made it necessary to hire a lawyer and give up a cut of my final payoff.
Well, I guess what I originally wanted to give to you today is that CSF is hard to quantify. You should be sure to get your case well documented. Then, don't bother filing for disability on your own, just go out right off the bat and hire a lawyer. I wish I would have, it may have saved me some time and money.
I have been retired/disabled from a state job for over 12 years....social security will automatically deny you. I did all the paperwork myself and was approved in 95 (but got better and went back to work) and reapplied in 2000 (and received) when u medical problems you know what they are better than any lawyer. I never paid a lawyer one dime....you hang in there.. if I can give you any pointers I will. I am going to a neurosurgeon on Friday; so, I am still hanging in there too. Be Blessed!!
The Following User Says Thank You to akasweet For This Useful Post: zimzampow (04-23-2013)
Well I hope all goes well with your neurosurgeon on Friday.
My point was that even with all this medical documentation they still just denied me twice. We have been living off our savings for almost two years because I just can not work. I cannot just be stubborn and stick it out. I need things to go right. I think that if I'd started out with an attorney I may have won earlier, but who knows. If I'd have won earlier, it would have cost less in attorney fees and it wouldn't have taken so much of my savings.
That's not to mention that COBRA is almost $1000 a month for just me and my wife but what can I do? After having cancer there is no way I can do without insurance. If I get approved, I will be approved for medi-cal so just saving that grand a month would be a real blessing.
Having no attorney may have worked for you but the fact is that it does not work for most people. So I wouldn't recommend doing it on your own, you were just fortunate, (maybe because you worked for the Government.) It seems to me that the Disability hopes that maybe you'll just go away and they will save money. Or maybe you'll just go back to work. Regardless, the longer they can keep your money, the more they have interest free.
If someone with CFS is planning on filing I just feel they are better off to start out right, rather than to fall into a whole like me. I think it's good advice but everyone will have to make their own decision on that.
I think that it's easier to get most benefits if you worked for the railroad or the government. So for you that worked, but I have been living off my savings for almost two years and I cannot continue funding my own disability. Cobra payments alone are almost a thousand dollars a month and that's on top of office visits and other monthly bills. But after having Cancer I'd be a fool not to keep Cobra.
By the way, Today I went for the hearing with the judge. He was very pleasant and friendly, but he is probably a good poker player because I could not read him. (My attorney could not either.) I think I did very well. I just answered his questions as honestly as I could. A couple things were difficult to answer. For example, my attorney said judges don't like it when they ask what do you do on an average day and you just answer with, "Nothing." So when I answered I told him that I get up, have coffee and toast with my wife, go back to my bedroom, lay down & watch TV. Then I get up and take a shower, then lay down. Then I get up and have lunch with my wife and we talk, I read the newspaper then lay down until dinner. Then I eat, watch TV, get on the computer a bit then lay down watch TV and eventually fall asleep. Pretty damn mundane don't you think? It's almost embarrassing to admit. But it's the truth except on days when I am crashed.
Going through the questions I was becoming more and more fatigued. I explained to the judge that phone conversations, or long talks with anyone tire me out. Judge was about 25 minutes. Then he had my attorney ask me questions and he hit most of the subjects that I wanted the judge to know. Next the Judge asks questions to the girl who swore in with me. I think she was called a vocational expert, but she''s the one who tells the judge what kind of work that I can still do (in a hypothetical situation.) Very boring stuff. Most of it was that my job skills do not transfer down to a more menial job. I am not sure but I think that most of her answers were that I couldn't really do much of anything and I heard the judge say that if I did have a job, I would miss more than 3 days a month and that likely wouldn't be acceptable in a work force. The first two hypotheticals that she had affirmed with possibles, my attorney re-dirrect addressed and pretty much killed them.
After the hearing my attorney told me that he, the judge and the vocational expert could see that I was becoming more and more exhausted. My attorney said that helped my case and that it verified claims that I made that day and throughout the 2 years of statements to the Disability Office. He said that was good. But again he could not get a read on the judge either. I feel that I got a little bit from the judge that seemed to lean my way but who knows? I think the attorney doesn't really want to build up my hopes then have them deny me. He's a good attorney and I liked him a lot. I was so glad that I had retained his services.
So, between 2 and 3 months, I will get my answer. If it's a yes then it takes about 4 to 6 weeks to cut a check. (Even with my fatigue I think I could cut a check a lot faster than that. LOL)
So that's where it stands today. I'm sorry if I over-explained, I know it's a boring story - but I know that before my hearing I wished I knew someone else's experience in a hearing. If this is you, my advice is to try to relax and be as honest as you can. Honesty shines through and (in my opinion) the judge will know if you are B.S.'ing him or not. He's been down this road maybe 3 to 5 times a day for many years so he's probably heard it all before. So, if the fact is that you can not work, don't worry about it, life is a roll of the dice. But if you can't work that's what disability is really for so I am hopeful.
So, good luck to all who waiting for a hearing, and everyone else; 'take a nap.' Seriously though, I hope that for all of us we find the ability to cope with this situation and that we have more (so called) good days than bad.
The following user gives a hug of support to zimzampow: akasweet (04-25-2013)
I am sooo sorry things are not going well for you....The reason way I say 'u don't need an attorney" is because all they are doing is getting you to fill out the paperwork that social security sends to you. This is what CAN BE DONE 1) GET ALL OF YOUR MEDICAL RECORDS...RELATING TO YOUR DISABILITY-Examples: Depression, Cannot think straight.) Once you have your records you will know what the Dr(s) are saying. 2) Fill out the paperwork with honest answers. don't try to sugar coat it. 3) Send paperwork back ASAP AND ALWAYS KEEP A COPY. I know this is very trying; but, hang in there. DON'T GIVE UP OR GIVE IN....JUST STAY THE COURSE. IT WILL GET BETTER!!!
Thanks for your comments, sweet is a good aka for you.
I think you may have misunderstood me. I didn't say that I lost at the hearing with the judge. I said if anything that I felt the judge was leaning my way and the fact that I became so visually fatigued during the hearing my attorney said that was good and supports my case. Actually, I think I probably won. It's just that most of these disability judges do not give an immediate decision. That's what comes in 2 - 3 months.
Anyways, as I said, I feel positive and I know that the sweet Lord will always provide for me.
God Bless you and everyone here searching for answers.