Those of you in your twenties...

Discussion in 'Fibromyalgia Main Forum' started by deadtired, Jan 28, 2010.

  1. deadtired

    deadtired Member

    I have three kids in their twenties...27, 24, 21...unfortunately they have all struggled with CFS all their life in varying degrees, our older two have been sicker (they came down sick in 1988 along with me and their father) the younger one less so. If they were asked today, they would probably say they realized that "something was wrong" in their early teens. It was an immense struggle to get to school everyday for them and even harder to explain to anyone(teachers, doctors,) how grueling just getting up and going to school was . I am sure all of you can relate. Back then they were saying it was rare to see a child afflicted. So now years later, I realize there were others all along.......I would like to know if you feel your parents are ill with the disease also. I am trying to figure out how and why this has happenend to us. How are you managing becoming independent? Are you having a hard time working? Are you still relying on financial support from your parents? Have any of you gotten disability income; if so, was it difficult to get? Hopefully they can manage with careers in film and art where they set their own hours but they have alot of difficult days.
  2. victoria

    victoria New Member

    My son came down with my symptoms of CFS when he was 16 and progressed to FM symptoms by 17. He couldn't get thru HS because of brain fog, memory problems, fatigue, and then all the pain. Our internist couldn't find anything wrong with him. By then I knew about Lyme, and sure enough he was so positive, he had all the bands the CDC requires for tracking/surveillance, 2X within 6 months of each other.

    I personally think that if he'd been female, he'd have been given the dx of CF/FM/ME. I responded to an alternative protocol for lyme and other stealth pathogens, which is how I figured out quickly to get him tested for Lyme, tho I didn't know that I had it.

    Anyway, back on topic: despite getting a fairly quick definitive diagnosis and treatment that we feel saved his life, he is disabled officially. Even so, it is very difficult financially, he does get food stamps as well. He is now 22.

    Life IS tough... even tho he lives in a university town and by his sister, and 'should' have plenty of opportunities to meet others his own age and have some kind of social life. But when you continue to feel not so good a good part of the time, it's hard to get out. I don't think he could handle much of a class of any type, tho he is trying a free class in 'survival spanish' since we moved to Mexico. I can sympathize & empathize... since I'm in a new place too - hard to meet people if not feeling well (I'm back doing a protocol myself, causing herxes)...

    So I don't know what to tell you deadtired that would be helpful.... He also hates to talk about it to anyone directly, tho he will if necessary. I wish there was some kind of support group for them... but again, there's the reluctance to 'dwell' on it. So I guess he gets along by being in denial to some degree.

    all the best,
  3. AuntTammie

    AuntTammie New Member

    I'm in my 30's, but most of the same types of issues apply to me

    .....I am on disability, but it is substantially less than I would be making if I were working for minimum wage, so it is not possible to live off of it alone....I have managed thus far by being extremely careful with what little bit I had managed to save prior to getting this sick (& I saved that even while going to grad school and only working very part time, & while dealing with the beginnings of CFS)....I have also had to get govt assist with meds (not on very many at all, though, bc I can't take most), govt assist with paying for Medicare and Medicaid (the Medicaid only helps with hosp visits, though, as no Drs around here will take it)

    ...there are other govt assist programs (food stamps and elec/heat assist, etc) that I am eligible for, but cannot take advantage of bc I am not physically capable of going to the places and applying, esp since some things require being there in the morning and my body simply will not work in the AM at all....I have also been fortunate to have family and church friends who have helped out with certain needs as they have arisen.....still, even with all that it is very very difficult to meet the most basic needs (& I do mean needs - I don't spend money on anythign I don't absolutely need)

    at this point I am also really struggling to be able to physically handle meeting my daily needs (things like getting groceries and doing laundry are almost impossible, but I don't really have anyone who can help with those).....a lot of days taking a shower is out of the question, bc I just cannot physically manage it

    getting back to getting disability depends on several things....first off is if they have worked at all - you have to have put a certain amt of money into it in order to be able to collect anything and the amt that you get is based on that, so even if they have worked and can collect, they will not get very much.....if they have not worked, they will be eligible for supplemental security income, though (this is completely income based - so even if they qualify for SSDI - disability- they may still get a small amt of SSI - supplemental....the income amt you have to be under to get this is incredibly low, though....the last I checked, it was somethign like 500 a month)

    also, SSDI is obviously based on lack of ability to is difficult to prove this, esp when you have something like CFS, but they are not supposed to actually focus on your diagnosis in determining this - they are supposed to focus on documented (this is key) symptoms and the way that those impact daily life and abilities...the proof of this comes esp from Dr documentation, but also comes from friends and family whoa re willing to testify to the person's disability (this may be written testimony or over the phone or even down the road in court)....there is also a TON of paperwork for the disabled person to fill out that pretty much covers every aspect of life

    there is a lot that has been written on this site about disability - I am running out of energy to write more rt now, but if you do a search on here you should be able to find a lot more

    as to parents, mine are not sick with CFS (thank God!) mom was diagnosed yrs ago with fibro, but she believes that was in error and she is ok now as far as that goes.....she & I do both have endometriosis, though, and there has been some suspicion of a link between that & CFS, and we both have a ton of allergies....and my brother has sarcoidosis (an autoimmune disorder)...I also have a cousin with MS and another cousin who I think has Lupus and it sounds a lot like she might have CFS, too....and I have an aunt with lots of possible associated illnesses in the family and extended family, but no other CFS (except maybe one cousin)
    [This Message was Edited on 01/28/2010]
    [This Message was Edited on 01/28/2010]

    [This Message was Edited on 01/28/2010]
    [This Message was Edited on 01/28/2010]
  4. TeaBisqit

    TeaBisqit Member

    I got the fibro symptoms at age 16. I ended up having to go to college part time at night because I was too sick to go a normal schedule. The thing is, I didn't really realize how abnormal it was. Like I was adjusting my life around the disease and in total denial that there was a problem. And yet, I couldn't go out every day, I was only able to go to school three nights a week and those few hours were killing me.

    I ended up getting totally disabled at age 21. And I've been on disability ever since. I'm now 40 years old.

    If you are worried about your kids being independent, make sure they get disability if they need it. And there is low income housing out there. They can even qualify for low income house without being on disability, it goes by income. You can check with your local housing authority and see if they qualify right now. That might help them the most in life. Having a cheap place to live, maybe having them work part time if they can, they can have independence with alot less stress.
  5. deadtired

    deadtired Member

    Victoria, thank you for your caring response. My two sons, (26, 24 and daughter 21) also act as if they don't want to "talk" about it. I am sorry your son was so sick during school, I look back and still can't believe they even made it through college (daughter is in last year) and it wasn't without alot of struggle.About the denial part.. My daughter flat out denies that she has CFS at all, although she battles extreme depression and for several months now is having stomach problems, she is up and down emotionally alot. Although they have enough close friends and their girlfriends and boyfriend, etc. that they can lean on for support and they do have each other (all living in same town) it is still hard being 10 hours away from them. With the way the economy is its tough for so many now and with young people with illnesses like these its like a double whammy. I know they don't like asking for so much help but they a. They have all found jobs but I know how taxing they can be and I worry about them all the time how they are keeping up. I do believe this disease is just one huge heartbreaker for parents. At this point I will look into the qualifications for getting food stamps. That alone could relieve alot of guilt on their part and help their situationa alot. Also, they were never tested for lyme. I am thinking I may have been tested years ago but I am not sure. That should be something I should look into also. Maybe I will wait until we can get tested for the XMRV. Thank you for sharing, Nancy
  6. deadtired

    deadtired Member

    Aunt Tammie, thank you for sharing. I can so relate to your difficulties , there have been times when my husband and I ordered our groceries from the store and had them delivered( some groceries have these services) My whole married life it seems was focused on how I would get the food, cook the food, clean the clothes, etc. My husband and I found ourselves very ill all at once at 36 years of age, with 5, 3 and one year old in 1988. My daughter had just received her 12 mos. shots and I still think they have something to do with the onset of our illness. I hope you will find in time that you will improve overall. Thank you for explaining disability. I have one question...if you get disability, or SSDI, are you allowed to work at all, like part time if you can? I think that would be the best scenario, just some income to help you out. I doubt at this time they are wanting to persue disability but fear it might be inevitable. As a parent this is heartbreaking. The older two have completed college and they are pretty much just starting out in the real world, so to speak. They are very motivated and no doubt would be high acheivers if they weren't sick. They are finding out the hardway how difficult it is to work and be unwell. None of them have any savings at all . I am wondering if you can even get disability if your parents are helping with rent, etc.
    Sounds like there is a common thread of related illness in your extended family. The XMRV virus apparantly , when its in a family some can be carriers, yet they have no symptoms. None of my siblings have anything like this , nor my father or mother. My husbands side, however has lymphoma, alzheimers, prostrate cancer, and throat cancer in his mother, father, and grandparents. Thank you for all your help . I intend to to search now to find out more about disability.
  7. deadtired

    deadtired Member

    Teabisquit, I know what you mean about not realizing how abnormal your activity level is. I realize it everytime I get around healthy people...! Afterall, our kids don't know any other way of being as theyve been sick since they were little. They don't know what healthy feels like, and I certainly forget what its like to be well. I'm hoping they can get by without disability, but I intend to let them know there are others like them getting by that way.

    As they want to live in a big city, they have done their best to find cheap rent. Trouble is, they aren't meeting the payments without out help. But I will mention the low-income housing. I have to admit that tears are coming to my eyes reading your reply. This is such a cruel disease and it doesn't care what age you are. I realized the other day that in another ten years my oldest son will be the age his parents were when they got knocked down.
    Maybe we have good things in store for us with the XMRV discovery, we all deserve a break soon. Thank you for sharing, Nancy
  8. AuntTammie

    AuntTammie New Member

    It is possible to get it while working part time. There is actually a limit on how much one can earn; not on how many hrs one can work. (I think it's around $900 a month gross income, but I don't rememebr the exact amt for sure.) However, obviously, if someone is able to work a lot of hrs, then they will not consider that person to be disabled. I was working very part time when I first got it. If your kids feel that they are really going to need it & are seriously struggling to work now, it is better not to wait, bc it can take a real long time and it does take a lot of physical, cognitive, and emotional energy to complete the application process. However, if they are still able to work full time or nearly full time, then they should wait until no longer able to do that for at least 6 months.

    (Sorry if that sounds contradictory.....what I mean is that it is obviously important to truly be disabled to the point where full time work is not possible before applying - and in order to qualify that has to be the case for at least 6 months....however, as soon as one reaches the point where full time work has not been possible for 6 months, it is best to apply asap, bc of how long and difficult the whole process can much as it stinks to go thru the process and as much as it is hard to accept that they might need disability (& I know this part was really hard for me to accept), it really does not help to put it off).

    As far as getting disability if parents are helping with rent, I am not sure exactly how they will view that. I know that they looked at every source of income I had, and the limits for assistance on a lot of things is quite low, but there is still a very good chance that they would still qualify even with your rent assistance. I know that many people on disability get govt housing assistance, so they would probably look at that as similar to having your help with rent. Unfortunately, that kind of (housing) assistance is not even taking people on waiting lists in my area, so I do not know much about it to be able to tell you more.

    I do know that the social security office closest to where you live would be able to answer any questions you have (and they would be able to give you more details on the exact financial limits, work income limits, etc)....they would also be able to tell you if your kids have worked enough hrs to be able to qualify for SSDI, or if they should only apply for SSI. Typically there are long waits to be able to talk to someone there, though, and forget about phoning them. You will probably just get an automated answering message. What I would suggest, if you want to find out more, is to write down every question you can think of, gather any employment and financial info (if you don't want to bring this info when you first inquire that is ok, but the more info you have, the more info they will be able to give you), and make an appt to talk to someone at the SS office. I would ask them not only about SSDI and SSI, but also if they can tell you more about any other sources of assistance, too. Though they don't handle stuff like elec/heat assistance, food stamps, etc, they should be able to give you an idea of where to go and what forms of assistance are out there.

    I do truly understand how much the whole thing stinks. I was also one of those very motivated high achiever types, too, and I hated admitting that I could not manage anymore, but I reached the point where it was just truly impossible to do anythign close to full time.....and now I could not even manage to successfully get to a job most days, let alone actually work. I can only imagine what it must feel like to be the parent and to watch your children go thru this.
  9. victoria

    victoria New Member

    are you or your husband on SS disability? If you are, and any of your children are determined to be disabled, they will qualify on your record since (likely) it will be based on a higher pay level.

    - if they have worked enough quarters to qualify for SSD but at a lower salary than a disabled parent received,
    -or haven't worked enough quarters to qualify,
    -or haven't worked at all,

    even tho SSI will first process it, SSD takes it over. The disabled child of a disabled parent gets about $100/mo more plus MediCare. The extra $100 covers the approximate $94 pmt. deducted monthly for MediCare. That's the only real extra benefit, as obviously you have a slightly better choice of doctors than you do with MedicAid.

    That said, if one gets MedicAid & SSI, no RX ever costs over maybe $4-$5 if that (a few years ago I heard $3) no matter what one is taking. However, whatever gifts that equal money, such as no rent, you are giving your children will be deducted. Over 18 however, one is considered an adult and expected to be self-supporting (ie, not supported by parents), so make sure that your loans are documented.

    The other thing is that yes, if you get SSD one can earn about $900/mo extra without anything being deducted from an SSD check, BUT if one is getting SSI, you can only make about $60 (this may depend on the state as SSI is a state-by-state controlled thing).

    I'd assume that the $900/mo thing would apply to the disabled child of a disabled parent(?) so far as I can see. Our lawyer's opinion was that one could, tho our son hasn't been able to get to that point so far.

    hope that helps...
    [This Message was Edited on 01/30/2010]
  10. deadtired

    deadtired Member

    Victoria, no my husband and I have never sought disability,not that it never crossed my mind.... fortunately, although my husband is not well either, he has managed to operate a business but thankfully been successful, mainly because he could be flexible with his hours, etc. Hasn't been easy for him needless to say.....
    I am going to keep all this information you've given me and share it with my kids. Have no idea how they will feel about it . But allowing that you could still earn $900 a month and still receive the SSD, that would be a huge help for them. I guess the hard part is trying to prove your disabled with this disease. Although I was diagnosed in '88, we didn't pursue getting all of them diagosed (gave up trying to find knowledgable doctors...even made trips to Children's Hospital infectious disease, and they didn't recognize the disease, hopefully that has changed since we were there) Maybe waiting until these XMRV tests are reliable will help in establishing disability. be help.
  11. deadtired

    deadtired Member

    Aunt Tammie...good idea about stopping into the social security office. That would be a good first step, and I could find out exactly how my sons and daughter can pursue disability. I' ve been told they would have to seek this out themselves as they are all older than 18. We will know in matter of time whether our second oldest will be able to maintain his fulltime job he just started last month. Thankfully, it is an office job where he is an assistant to an artist; his last job at an arts suppply store, although he enjoyed it proved either too physically demanding, or socially demanding.....or both...I'm sure you know what I mean. Our oldest is actually working for himself and hopefully he will eventually get some films marketed but that is something that takes lots of time and work before that comes around. Than you again for the help and preparing me...sounds like a huge effort; but thank god disability is around for those who have no choice but to seek it. You sound alot like me, I have not been able to even consider any
    activity outside of the house such as work, even voluteer, etc. on a schedule of any type. Whatever energy I had I focused on in the home. It is sad when you give up so much, but I remember feeling relieved when I finally confessed I just could not do what I kept expecting myself to do or be the social being I would like to bebecause this disease just would't allow it.
  12. victoria

    victoria New Member

    I hope they've worked enough quarters to qualify for SSD, I forget how many it is, but it should be easily found on the SS site.

    As far as being disabled, it's the medical and psychological reports that count, not just a diagnosis. My son has chronic lyme, and while the judge was actually "lyme-literate" it didn't matter what anyone wanted to call it (postLyme autoimmune disease or Chronic Lyme) -

    I feel what made a strong case was the regular/continual doctors' reports - both the medical and psychological - that made the difference. Plus I wrote a narrative of what I saw him experiencing. A narrative(s) from family members or close friends can be very important in documenting the effects of the illnesses.

    If any of your kids decide to go for it, please do not let them neglect the psychological aspect, it is equally important as the medical records....

    The bottom line is how well a person can function on a job, and whether or not they can keep any kind of reasonable schedule....

    all the best,