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  #201 (permalink)  
Old 08-06-2002, 07:05 AM
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Hello Pam,

I'm going through the fight for disability too. I've just turned 45, and haven't worked at all in 14 months.

I was wondering if the fact that you home-school your son has caused any trouble for you with the disability board? Have they claimed that since you can function as a "teacher" at home that you could earn a living?

I know they have claimed that since I can COOK for my family I could earn a living! <Can you believe that?>..Of course that was in the initial rejection letter, where they also described my many health conditions as "some pain and soreness".

The kicker with them is doesn't matter how much of a financial burden you have. In order to earn a disability determination you have to not be able to earn a livable wage. You can be rich as Donald Trump and still earn Disability if you are truly disabled.

After all, it's your own retirement money comming back to you. You're just trying to collect it sooner that the age of 65. That's what we are doing here...sueing for our pensions early...we are claiming that based on a disability we have to "retire" from the work world early. We want our pensions now. And all we get from them is what we have contributed... The folks at the SSA act like we're taking money out of THEIR pockets!

It is so disheartening. But don't give up Pam. If you can't function in the work world, persue your rights! If it's just the health insurance thing, look into what other insurance coverages there are out there for perscription drugs. Maybe medicaid covers drugs in your state? Here you can buy into medicaid and it covers everything 100%.

Good luck! And keep your spirits up. We're all with you.
  #202 (permalink)  
Old 08-06-2002, 01:14 PM
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It was never brought up about me homeschooling my son until this very last time a couple of months ago, I (along with my lawyer) went before an appeals hearing judge and she basically asked me alot of questions and then said she would make a decision and I would be notified. During the entire hearing, there was a man connected to us through a phone line, he could hear us and we could hear him, I think he was something like "a vocational evaluator". He plain out said at the end of the hearing that I was not able to earn a livable wage for 80% of the time, he said there was three jobs in my state that I might could do, BUT he did not beleive that I would be able to actually perform the jobs on a satisfactory level and basically said that my attendance would not be satisfactory. The judge lady asked about homeschooling, I told her that we TRY to do his schooling just before lunch, that by the time I get dressed and fix him breakfast it's usually around 11:00 before we start school. I told her that after I fix lunch and we eat, we usually read together for a little bit. If that judge only knew how much homeschooling helped me, I feel like if Bobby went to public school, he would always be late or absent! By homeschooling, I can work around my health woes, for instance if I wake up with a migraine I can sleep in a little bit if need be and school Bobby in the afternoon or evening.....there have been days that we skipped schooling altogether and made up the lessons over the weekend or whenever I felt better. But I'm sure she doesn't see things like this because she even turned things around and said things in my denial letter that was on the same track as what I said but she made it looked better than what it was....for example, I stated that I only walk the dog for about 10 minutes at a time 2-3 times a day and she said I walked 30 minutes a day.....makes me mad everytime I think about it because I know there are people who have SSD who don't really need or deserve it and then folks that really need get hassled about it.:mad: Oh well, the saga continues because I won't give up either.

Talk later.
~~Pam (in NC)
wife to Bobby (17 yrs.) and
homeschooling Bobby, Jr. (12) for over 9 years
  #203 (permalink)  
Old 08-07-2002, 01:26 PM
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Fibromyalgia, etc...

Hello, everyone! Sorry to have been gone from posting for a few days but I've really been sick. I'm a bit better now and am playing catchup on email and office work.

For all of those going through the disability process: do not give up! The judges, doctors, evaluators, etc., will all say negative things just to see how you react. Do not get mad at them; it's just the system. Instead, counteract it! Explain yourself and correct them if you have to.

As far as home-schooling, I completely understand since I did it for several years. This was prior to having to go through the disability process. However, I am sure I would have encountered the same hassles in that the judge or evaluator would have said since I can teach, I can work.

Another very important item -- I took notes at my hearing as best as I could on any negative thing they said, and what my response was. That way, if there was something incorrect in the ruling I would have proof that what was said was NOT stated correctly in that ruling. It was very difficult, and in fact I had my attorney do most of the note-taking for me. We set this up ahead of time. It's perfectly legal and helped me keep issues straight in my mind so I would know how to defend myself and/or respond to those issues.

Dolores, I never gave it a thought that you were shouting -- I forgot that caps in emails are supposed to mean shouting! I just use it for emphasis. I know what you mean about reading -- I now have to wear my reading glasses to read my email. Putting things in capital letters makes perfect sense, and I am sorry if anyone was offended by your doing that. I certainly wasn't! You hang in there!!

I am sorry, but I'm not feeling real good right now and must lie down. Please know that all of you are in my prayers, and if there's anything I can do for you please don't hesitate to email me either privately or on this web thread. Thank you all for your love and support! We all need this so much, because going through autoimmune diseases and disability is like a living hell much of the time.


Carie A., Oklahoma City
  #204 (permalink)  
Old 08-08-2002, 01:03 PM
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Hi everyone.

So many newer people coming in lately. I haven't been in for a few days because not feeling the greatest. Even today I am having a hard time staying focues so it will be short. Just wanted to say hi and hope things are going fair for every one. I not longer even try to think about things going good - I have decided that if things are at least fair then I can make it through the day.

This morning we went to court with my grd to have her judicated so that she can be sent to a treatment facility for behavior disabilities. It was so hard to finally know that I have completely given up trying to care for her myself. I have taken care of her for 9 years - since we brought her home from the hospital while my dd was so sick she couldn't care for her. I have always felt if I could just focus entirely on her then I could help her overcome her disabilities but I finally reallized I was doing neither of us any good by trying to do it myself she needs more than I can provide anymore. It was so so hard to sign those papers.

Now it is up to the state of Iowa to provide what she needs. I can sit back for awhile and just be grandma. I hope.


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.
  #205 (permalink)  
Old 08-08-2002, 02:42 PM
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Oh my what an emotional day you have had. I feel so bad for you. Here is a hug. I know you have tried your best to care for her and I just can't imagine your pain. Hopefully, in time, you will see the good results of doing what you had to do.

I know what you mean about hoping for a fair day. Last night I had the worst foot cramp. I would just get rid of one cramp and it would go into a different one. My toes went in directions they never went before. Then when I woke this morn the same leg went into a cramp just above the knee. I've been afraid to walk today. Been going from chair to chair. Thank goodness I wasn't driving the truck when it happened.

Wish I could do more to help you other than sending a hug. Just know that I sympathize and I will keep you in my thoughts and prayers.
  #206 (permalink)  
Old 08-08-2002, 03:06 PM
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Fibromyalgia, etc...

Hello! Well, today I feel like a human pin cushion -- I had an appointment with my neurologist to follow up on an MRI I had done on my neck (cervical spine) area. I've had progressively worse problems with neck pain that grew into pain, tingling and numbness down my arms and into my hands. Well, this was the third MRI in 2 years and I have another bulging disc in my neck. Also, when the doc did the EMG (electromyelogram) there was decreased nerve sensation (feeling) in both arms, hands and neck. So he wrote up a letter for me to take to my military treating physician and rheumatologist, recommending and endorsing the opinions of the rheumatologist that I undergo trigger point injections in my neck in order to get some relief from the pain. I have basically a constant migraine that never lets up or goes away. I've taken all the different and new NSAIDs and just cannot tolerate any of them. So I'm sticking with Motrin and Ultram for the time being. I have ordered a new immune system supplement that was highly recommended to me and that just came in today. So I'll give it 1-2 months and see how that does. Also, I found out I am getting basically no estrogen into my body despite the estrogen patch I was prescribed after my hysterectomy last December. So I've been given a plant estrogen pill with testosterone in it that has proven very effective. I also found a wealth of info on menopause at -- click on "Science" and there's something on almost any subject you can think of. So I ordered the Synergy 3000 Woman, a very potent vitamin, mineral and herbal supplement that is much better than what I've been taking. It costs initially, but it's not bad; and it will actually be cheaper because I will only have to supplement it with 1 or 2 other pills instead of taking a handful 2 or 3 times a day like I have been!

Enough of me -- sorry that was so lengthy!! I am feeling more in control since I did several hours' worth of research, assisted by my wonderful husband, and ordered several highly recommended items. I had absolutely no idea what an important role estrogen plays in our bodies! If you want to read about that specifically, go to, click on "Science" and then "Menopause." It is definitely worth reading even if you do not have any troubles with menopause yet. I also had no idea that my behavior would be worse than having PMS!! It makes PMS look like I'm an angel, believe me!!

I need to check out of here and get dinner. Keep the support, love and prayers going for all of us and for new ones that seem to sign on every day! I sure wish no one else would ever have to go through what lots of us here are going through!! But we're made strong for a reason, aren't we?

With much blessing and prayers!!
Carie A., Oklahoma City
  #207 (permalink)  
Old 08-08-2002, 04:33 PM
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Hi everyone. I hope you are all having easier days.

I went to see my doctor today, after a solid week of horrible muscle spasms and pain. I recieved a series of trigger point injections and a reduced physical therapy schedule. I'm hoping this brings me some relief.

I have an appointment next Thursday to begin steroid injections into the epidural spine. <I have arthritis in the spine and facet joint stenosis that impinges on the nerves...causing terrible pain and muscle spasams in my lower extremities.>

Does anyone else have this? Has anyone else ever had theses injections done in their spine? I pray they bring me some relief, because I can hardly move at all lately.

My doctor says that people with fibromyalgia and arthritis often get caught in this cycle of spasm and stenosis. It came on so suddenly, precipitated by a lower back sprain six weeks ago. I feel like I will never be the same again, and have been so depresssed. I just hope the injections will be a helpful treatment.

I hope all of you are well, and keeping your spirits up.

your friend..

  #208 (permalink)  
Old 08-08-2002, 07:54 PM
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stitcher45 **Grandma to grandma,

I know what it is like to give your ; to your small granddaughter (love is timeless and yours is given without thinking about it, like taking a breath; keeping your spirit up for her as for your daughter too!) I have a grandson who is just 2 years old; they are precious these little angels! of ours. Hugs to you and yours.

Have you tried taken potassium tablets for the leg cramps
it really helps me. Fresh oranges or orange juice can help too!

See your doctor and ask him/her, the possibility of running these tests (if you have not already had them done): your electrolytes, blood sugar, triglycerides and possibly your autoimmune system.

Taking steriods and antibiotics for so many years; they can break down in your body, could do damage your system and vital organs. I, myself, have severe joint pain and (edema), swelling in ankles, legs and hands. There are red areas on my calves; which I have no idea what is causing that either

With not knowing it is happening to you. (I am not a medical person; but because I know my own body and all that has been effected it) the past 10 years or so. Putting on weight like crazy, getting type 2 Diabetes, telling doctors this was going to happen. Sometimes blurred vision like right now! Bugs the heck out of time.

Off subject:

Now on disability not by choice, because I could not work my normal days became suffering and possibily losing hours from work that I couldn't afford. Trying to find someone to hear my concerns fell or have fallen on deaf ears and eyes.

I have SOSA (Severe Obstructive Sleep Apnea); there was 105 episodes per hour and not breathing properly in 1995, have a trachea placed in my neck in 1996; because I couldn't tolerate the CPAP (continuous positive airway pressure) procedure.

Well, after 6 years of messing with this contraption, I finally got my trachea removed completely and will be going in for another study to see if I can tolerate it again. I had a sleep study again last year 2001, while having the trachea and the study showed that I was at air flow percentage of 59% almost half of episodes then before.

So wish me luck on getting this next test taken care of and for the plus that I can use the CPAP again ! :p

Thank you for letting me again spill out what I am feeling and undertanding the problems I am in and encountering presenty.

Go and hugs your children, spouses, and any other family member and tell them how special they are in your life

Bye for 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.
  #209 (permalink)  
Old 08-09-2002, 01:36 AM
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Val and Cheryl

I read through your posts and I wish there was something I could do to help you. This disease is so devistating. It takes perfectly healthy women and turns them into invalids. But in spite of the pain, you continue on trying to share your love and compassion for others. Hopefully, by the time our daughters and grandaughters grow up they will have figured this out. In the meantime, I will keep you in my thoughts and prayers.
  #210 (permalink)  
Old 08-10-2002, 01:46 AM
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Exclamation Fibro Sisters

It sounds like I have found my "fibro sisters". This is such a widespread condition, I am finding more & more people with it. I was a School Bus Driver for 23 years but now due to my Fibro, Osteoarthritis (I have to have a total knee replacement), Sleep Apnea & high blood pressure I am out of work.
The required yearly physical is very strict & I was unable to pass is a year ago so they will not let me drive anymore. Due to the fact I would not be able to lift the students in case of an emergency evacuation, the meds I take, not to mention the fact I fall asleep during the day due to the Sleep Apnea. When I went through a sleep study they found I wake up over 100 times & stop breathing almost that many times for almost a minute at a time. So that cause terrific exhaustiion.
BUT after applying for Disability through the School Employee Retirement System I have been denied! Even though I had three of my Dr. send detailed reports that I cannot operate a Bus in a safe manor (I had found myself dozing off), the retirement system sent me to four of their Dt. one being a Psychiatrist, they said I should take MORE antideppresents and go back to work.
Problem being, the schools Dr will not approve my physical & WON'T let me work anymore. So I am caught in the middle! My Sleep Dr is trying to help me appeal this decision, but in this Retirement system it is harder than Social Security & I can't find an attorney willing to fight them.
So looks like after 23 yrs. I have no job and no benefits. My husband got me on his insurance, but it isn't as good as mine was.
I am on Cardizem, Diovan, for blood pressure, Neurontin 2400 mg. a day, Ultram 200 mg a day, for fibor, Premarin, hormones, Protonix, acid reflux, fionoral for headaches, trazodone, to sleep & now they added bextra 10 mg a dayfor my osteoarthritis. I take alprozolam occassionaly for anxiety. I don't need anymore drugs & I certainly have no business driving a school bus taking all of these.
Oh I have rattled on! But the pain & exhaustion can get to you but we must carry on. We have a local Dr Pelligreno who has fibro and has wrote some books on it for patients & caregivers that are very helpful.
Hang in there everyone & I enjoy reading your ideas!
Sara & Matthew's Mema
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