My son was just diagnosed with advanced ankylosing spondylitis.

[Fridays Child]

This answers a lot of questions for us, such as why his health has deteriorated so rapidly and why the head of his left femur has worn through the socket and entered the pelvic region. His vertebrae are fused, as is his and sacroiliac joint. He's in extreme pain and nearly immobile. No insurance, no job. Social Security Disability has turned him down but we're appealing, now that we have a diagnosis. He needs expensive, risky drug therapy and a double hip replacement, ASAP.

Any advice--not diagnostic but in terms of resources, for example--and healing energy would be humbly and gratefully accepted. He's only 29, and he's devastated by what seems to be a very grim prognosis. He's a good person with a kind heart. This shouldn't happen to anyone and it shouldn't have happened to him.

[blogslut]

1. I send good thoughts

And support for your SS appeal. No matter how many times they say "no", don't believe them. They lie.

[Fridays Child]

11. Thank you.

:)

And I'll remember your advice about SS.

[nickinSTL]

50. yes - from what I've heard

SS disability routinely reject the first request.

Keep trying. If you're persistent, it will eventually be approved, it's just a bureaucratic pain in the @$$ to go through.

[Fridays Child]

53. This is what everyone says.

We will persevere. :)

[DesertFlower]

56. i was turned down 2x even though 5

doctors said i couldn't work. then i got a lawyer and had a hearing with an administrative law judge and won my case. the money was given to me retroactively. the lawyer got some, but i don't know if i would have won the case without him.

[Fridays Child]

92. As attorney fees go, these days, disability lawyers aren't getting very much.

I don't think they're taking SSD cases to get rich, anyway. And the attorney we've consulted seems to be genuinely compassionate.

[DesertFlower]

102. mine came to $16,000 retroactively. my

lawyer got $4,000. i think that was the maximum they got back the ('92).

[grasswire]

2. I'm so sorry.

Does he also have psoriasis? I know those two diseases are associated because I have a couple of teenage family members with inherited psoriasis, and we've been watching for signs of the spondylitis.

I don't have anything to offer but my best wishes for speedy resolution of the disability. There probably is a society and support groups that could point you to resources.

Take care of yourself, too. We care.

[Fridays Child]

12. No psoriasis, and I know of no other immune disorders in the family.

We don't know a lot of the medical history on his father's side, though.

Thank you for your kind words. They help.

[Flaxbee]

3. I am so sorry to hear this, Fridays Child, and all my

love and positive energy to you and your son. Shouldn't happen to anyone, you're right, and awful for such a young man.

I have no advice, other than to look for long-term things that he will be able to do to feel fulfilled and productive once the hip replacements are done and his pain is managed, which I hope will happen soon.

:hug: to both of you.

[Fridays Child]

14. I'm grateful for your positive vibes.

I believe that it helps.

:)

[Call Me Wesley]

4. Sending good vibes to your son.

:hug:

[Fridays Child]

15. Many thanks...

:hug:

[UndertheOcean]

5. Very sorry about your son .... :(

[Fridays Child]

17. Yes, it's a tough thing, to say the least.

:(

[Haole Girl]

6. Contact an attorney who specializes in disability/social security

Also, you might contact your local media outlets. Tell them your son's story. Make people listen.

Sending many vibes and prayers to you, your son & family.

:hug:

:grouphug:

[Fridays Child]

18. We did see an attorney.

She'll come on board now, or if we're turned down a second time. We'll decide after we see what kind of documentation the rheumatologist can give us, when we see her next week. Both the doctor and the attorney are behind us 100% and will do everything they can.

I also like your idea about getting his situation out in the public eye. This will be his call, of course. He's very private but he's learning about the grace of letting people help him. I'm proud of him for thinking about how his situation can offer others the opportunity to be of service.

[JitterbugPerfume]

7. give the little guy our love

and keep some for yourself

[Fridays Child]

19. Many, many thanks.

Your response is so uplifting. :hug:

[Gormy Cuss]

8. I agree with Haole Girl about finding an attorney, and look for other advocates as well.

At the bottom of the Wiki page is a list of groups that may be able to point you/him in the right direction for various supports. Contact them all now -- get the process started.

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

Healing vibes for him too.

[Fridays Child]

20. My gratitude for the link and for the vibes.

:hug:

[Akoto]

9. I can relate to some small extent. Get a lawyer.

I am a 25-year-old male with chronic pelvic pain syndrome. Pain in the region, if uncontrolled, can be excruciating in a way that's not true of other areas of the body. I had to quit my job, and though pain management and physical therapy have helped, I still don't have a normal life.

As far as social security goes, don't go at them alone. Get a lawyer. I'm presently coming up on receiving a date to see a judge, after my initial request and appeal were both denied. This is in spite of the fact that my doctors have listed me as disabled. SSD will try to fight you every step of the way, but you've got to keep at it.

[Fridays Child]

21. The waiting list, here, to see a judge is one year long.

That's if the first appeal is rejected. We won't stop fighting.

Healing energy out to you, and I hope you win your case.

[Akoto]

33. Sorry to respond so late ...

I appreciate the good vibes. :)

That's how long I've had to wait for a date, one year. According to my lawyer, that is the longest they can go without giving you one. So, I'm hoping something will come my way soon. Even then, I may get rejected and have to start all over again, but I'll keep trying!

My best wishes for your son. I know how much it sucks being disabled with pain at a young age, particularly pain in that region of the body. There's another side, though. Once I got past the grief, I found that I could still do things that made my days worthwhile, even if I had to do them from bed. A laptop is a real blessing.

[Fridays Child]

36. No problem. I just got home.

So, you are all too familiar with the Social Security runaround. It's not fair, and you should have gotten benefits the first time you applied. Their system for identifying those who need help is badly broken. I know someone who got SSD and other benefits by being exceedingly untruthful. It angers me to no end.

Re: grief, I think he's still reeling from the diagnosis, and I suspect he'll go through a gamut of emotions, just as people do when dealing with other kinds of losses. I'll be there to support him.

I like the laptop idea. If I can afford it, that'd be a great Christmas gift for him.

:hug:

[CaliforniaPeggy]

10. Healing vibes for your son, and for you as well...

What a horrible thing to have happened...

:hug:

[Fridays Child]

22. Thank you, Peggy.

I will do whatever it takes to help him. :hug:

[MrScorpio]

13. Sending all my vibes

:hug:

[Fridays Child]

24. Thank you, Mr. Scorpio.

:hug:

[Shine]

16. I'm so sorry to hear this sad news. My best good wishes for you and your family.

I hope you can get hooked up w/ a social worker or case manager who might be able to point you in the right direction, in terms of resources available.

I also hope he can get some sort of counseling for emotional support to deal with this recent diagnosis and any feelings of depression which may come up.

Hang in there. :hug:

[Fridays Child]

23. Thank you. Yes, he needs care on every level...

...and support around all aspects of his life, right now. I'm working on it. I just started a new job, so I'm under some time management stress. But the good thing is that I can find all sorts of resources through the work I'll be doing. And the company philosophy seems to be very family-oriented. They're adjusting the training schedule, one day next week, so that I can attend my son's rheumatology appointment with him. I was a little afraid to ask because I'm new but, as soon as I did ask, it was done, without hesitation.

[BlueIris]

25. I will think the absolute best for him. nt

[Fridays Child]

37. Many thanks.

:hug:

[Demoiselle]

26. Lots of love and healing vibes for your sweet son and all of you.

[Fridays Child]

38. Your words are so appreciated.

:)

[GCP]

27. How awful for you both

My sincere best wishes for your son. This seems like a good site

http://www.spondylitis.org/main.aspx

[Fridays Child]

39. His burden is immense. I'm heartbroken for him.

Thank you for the link. It does look like a good site. :)

[GreenPartyVoter]

28. I'm so sorry. I wish I could do more than just send vibes. *hugs*

[Fridays Child]

46. It's important...

...and I think it really helps. Thank you so much. :hug:

[RFKHumphreyObama]

29. My thoughts and prayers are with your son, you and your family

:hug: :hug:

[Fridays Child]

45. Your energy will help.

I believe that. :hug:

[denbot]

30. Man that sucks..

Best of vibes to you and yours.

[Fridays Child]

44. Thank you so much.

[femmocrat]

31. I'm so sorry, Fridays Child.

Unbelievable that he was turned down for SSD. They must be heartless.

Sending him and you best DU vibes for some help soon! :hug:

[Fridays Child]

43. From your keyboard...

...to the universe's ear. :hug:

[Odin2005]

32. OUCH!!! That really sucks!

He was DENIED disability? BASTARDS! :grr:

[Fridays Child]

42. Indeed, it does.

We will prevail, though, because I'll never give up.

[crim son]

34. Of course, sending vibes, good thoughts and to the Deity,

requests for help. I agree with the above poster who suggested making your son's plight public, and I think your perspective on that, i.e. giving him the opportunity to experience the gift of being helped, and the givers a chance to be of service, is grounded in truth.

Thinking of your son now.

[Fridays Child]

41. My gratitude is huge.

Many, many thanks. :hug:

[emilyg]

35. Best wishes. So sorry.

[Fridays Child]

40. Thank you.

[SeattleGirl]

47. Good vibes to you and your son, FC.

And I'm glad you are appealing SSDI. In my experience with disabled people (mostly in worker's comp), SSDI seems to automatically reject most people on their first application, but often approve them if they appeal. That you have a diagnosis now is very good news; I wish both of you well.

[Fridays Child]

48. Thank you so much for your insight and encouragement.

:hug:

[hippywife]

49. I am so sorry to hear this.

It must be terrible to watch your own child go through so much pain and the whole process of trying to claim disability on top of all of that.

:hug:

[Fridays Child]

60. Yes, it's pretty terrible.

But I'd trade places with him in a heartbeat, His pain is so awful, I just want to take it from him.

[Arugula Latte]

51. I'm so sorry.

My god, that sounds just awful. I hope things start to look up soon. :hug:

[Fridays Child]

61. Thank you, so much.

:hug:

[applegrove]

52. vibes.

[Fridays Child]

62. ...

Thank you. :)

[WinkyDink]

54. {{{Fridays Child }}} I hope the Universe begins to shed grace on your suffering son.

[Fridays Child]

63. I believe that can happen.

And will. :)

[WCGreen]

55. I can't believe that SSI turned him down.

It may well be because of the state you live in. I looked at your profile and you have not declared.

It could also depend on your doctor and how he writes up the diagnosis.

I would wait until you are turned down for appeal before seeking the help of an attorney because they will usually skim off 1/3 of your first years award.

I had no trouble getting full disability here in Ohio. I had a good doctor who was very thorough. I also was able to provide a lot of evidence on my side.

Good luck. I know it can be a log slog if every I isn't dotted and every T isn't crossed.

[Fridays Child]

65. We have a great doc on board, now.

I think (hope) it makes a difference in the appeal. :)

Edited to add that we're in Arizona.

[Hannah Bell]

57. from what i've heard, getting turned down the first time you apply for ssd is fairly common.

i see you're going to keep trying.

i'll bet he gets it on the next try.

[Fridays Child]

67. I've heard the same thing.

And I hope you're right. :)

[madamesilverspurs]

58. My thoughts and prayers are with you and your son.

Take the advice to use an attorney, it will let you be there for your son and also free up some of your time to take care of yourself.

Social Security came through with my disability determination in 1992, in the same month the Supreme Court ruled that SS could not use non-medically trained personnel to make decisions of disability; I'd tried for years and finally got an attorney, best thing I could have done. The percentage that goes to the attorney is well worth it. Stories like yours (and mine) testify to the need for comprehensive health care reform, and I've told my story at events pushing for reform. It's obscene in the extreme that this country responds to those who seek help by putting them through a process that is tantamount to torture.

Again, my thoughts and prayers are with you. Please keep us posted.


-

[Fridays Child]

68. Thank you, and I agree completely.

I'll keep you posted. :)

[Urban Prairie]

59. I also have Ankylosing Spondylitis, not quite as severe as your son's.

But I have Peripheral Arterial Disease as well, so with my long history of medical treatment spanning 5 years, and with three physicians' reports, I was approved for SSD on my first application.

I wish your son good luck on his appeal.

[Fridays Child]

69. Thank you for the encouragement.

And healing energy out to you. :hug:

[pnwmom]

64. I'm so sorry, Fridays Child. There's nothing more heart-breaking and stressful

than fearing for your child's well being, and your son has been hit with a horrible illness. You're right -- this shouldn't happen to anyone. And SSD is just pouring salt into his wounds.

My heart and prayers go out to you and your son.

[Fridays Child]

66. Thank you!

Your energy is gratefully received. :)

[Pharaoh]

70. Best Health care in the World!

:sarcasm: :sarcasm: :sarcasm: :hide:

[Fridays Child]

78. I know, right?

Sucks in technicolor. :(

[truedelphi]

71. Sorry to hear of such a devastating illness descending on your

Son, and at such a young age. I will add you to the household's prayer list.

I don't know where you live, but do call your County and see if there is a way to get County benefits, like food stamps and county/state medical insurance benefits. Since taking Office, Pres. Obama has declared ALL counties in the USA to be emergency counties, so there is no possibility of getting some strange and sadistic case worker who will tell you your son has to look for work in order to qualify for benefits. (The social workers in most places now understand that there are few jobs out there. But if it weren't for Obama making the declaration of all counties being emergency counties, then some strange social worker might demand the work search - after all, their argument might go, if your son was really disabled, then he'd have Social Security, all the while acting like they are not being sadistic.)

Secondly and perhaps just as important, see if there are any independent living centers in your county. You can ask about this when you call Social Services. In California, many counties have "Independent Living Centers." People at these centers may know of decent groups that can help you specific to your son's ailment. They also can help you connect with care givers, and in California they may be able to help you navigate through fighting for your son's right to have SSI.

Since he is over 21, he should be considered as an independent adult, so your resources should not count against his getting the maximum amount of food stamps or health insurance.

[Fridays Child]

79. All great suggestions.

I'm printing out your response. And thank you for putting us in your prayers. :hug:

[G_j]

72. ==

[Vinca]

73. Isn't he at least eligible for Medicaid?

You could still continue the disability fight, but he needs medical care now. Try calling the insurance commission in your state.

[Fridays Child]

80. He was laid off just before his rapid deterioration began.

His meager unemployment benefits, which will run out very soon, put him a few dollars per month over the qualifying maximum income for Arizona's Medicaid program, AHCCCS. So, it will be a couple of months before he achieves the proper level of economic destitution and despair, required by our government.

Go Arizona. Go USA.

[Vinca]

104. What a mess we're in. Remember that Thursday, July 1,

is the day those of us with pre-existing conditions who can't get insurance coverage supposedly will have access to it via the federal site. The problem, of course, is that having insurance doesn't equal getting medical care and I fully expect the program will be too expensive for me. Don't forget to check it out for him, though. I suppose calling McLame's office and begging for help is a waste of time since Republicans don't care if we live or die.

[Tailormyst]

74. Just to let you know, you almost always have to appeal

My ex-husband had both hips replaced at age 34, one of them twice. It took close to two years to get SS. Their hopes, as fucked up and wrong as it is, is that you will give up trying to get it.

[Fridays Child]

81. Yes.

But we won't give up. Best to your husband. :hug:

[Spacemom]

75. My heart goes out to you

My father also has ankylosing spondylitis. He too filed for disability and was denied the first time, even though he is obviously disabled. He got a lawyer and won on the appeal. I advise you to get one too. Once your son gets disability he can qualify for medicare.


My dad was diagnosed in his 30s and is now 61. It's hard at times but with treatment, it can get better.


I wish all the best for you and your son. :hug:

[Fridays Child]

82. Thank you, so much.

And good vibes to your father. :hug:

[Enthusiast]

76. Very sorry about you son's

illness.

[Fridays Child]

83. Thank you...

:hug:

[bigwillq]

77. Sending out my best vibes

for him, and for you and your family. :hug:

[Fridays Child]

84. It is so appreciated.

:hug:

[Fridays Child]

85. Gabrielle Giffords' office has made an inquiry in his case.

When I called his examiner, today, about a letter she sent me, she said that his case was the subject of a congressional inquiry. That means that Rep. Giffords has acted on my request for intervention. Oddly, though, her office never responded directly to me.

[Kali]

87. excellent!

good luck to you both

[Kali]

86. I am so sorry.

Seeing our children suffer is so hard.

You are in Pima county if I recall, right? I'm working on something else for you , but there is a nonprofit agency that might be of some assistance, if you haven't already heard of it:

http://www.pcap.cc/

Pima Community Access Program, also known as "PCAP", is a not-for-profit organization that provides access to professional health care at discounted prices that the uninsured can afford.

PCAP links low-income, uninsured residents of Pima County with an affordable, comprehensive and coordinated network of health care providers.

PCAP Offers:

* Affordable co-payments only if services are used.
* No monthly premiums.
* Low membership fee of $40.00 every year.

[Fridays Child]

88. That's the truth. It's hard for me.

But the level of fear, despair, and pain that I know he's feeling takes my breath away--literally.

Yes, I'm in Pima County. I've never heard of PCAP. It sounds like a great resource for my son, and you are wonderful for providing the information. :hug: :hug:

Check your PMs.

[librechik]

89. so sorry to hear about this, FC--what state do you live in?

My state of Colorado has some resources for indigent (sorry) sick folks

Denver has a pretty good system of free clinics that serve neighborhoods, and of course as a Denver resident you can go to the main hospital and seek care of various kinds other than emergency which is also excellent there. (Denver is a pioneer in providing an affordable public option) There is a similar system here for non-Denver residents at the University Medicine center. Poor folks from all over the state go there to use the clinics.

We also have a program called Aid to the Needy Disabled, which takes a couple of months to enroll in with all the red tape, but is easier than getting on SS, which I was told is an automatic denial and then you appeal and it takes months or years to get assistance.

Call up your local social services dept and get a social worker involved in your son's case. They're the experts in what's available in your area, and if you get a good one, they can be enormously helpful (my next door neighbor worked as a social worker for 20 years and he recently guided my friend through some kind of awful autoimmnune disease which was killing him and keeping him out of work. It took patience but eventually my friend found the right doctors who recognized his symptoms and eventually the A.N.D was approved and he can pay his rent again. That was harrowing.

Thank god you have a diagnosis--that's key to getting the right help--god bless you and your precious boy

[Fridays Child]

94. Thank you, so much!

We're in AZ. I will look to see what social services are available to him here. That's a great idea.

[mike_c]

90. best wishes to you and your son, Friday's Child....

I can't offer any advice, just hope for the best outcome possible. :hug:

[Fridays Child]

95. ...

Thank you. :hug:

[lost-in-nj]

91. Really

all I can offer are good thoughts and vibes
and am so sorry about the the BS

peace to your family



lost

[Fridays Child]

96. So appreciated.

Your support. :hug:

[midnight]

93. Please look at this site with your son, and see what can be done. Hugs.

Right now, in 45 states across the country, insurance companies can discriminate against people based on their pre-existing conditions – leaving many Americans unable to get health insurance.
The Affordable Care Act creates a high-risk pool program to help adults who are uninsured and have a pre-existing condition get insurance as soon as possible. The program is a bridge to the health insurance exchanges that will be available in 2014.
Earlier this month, Secretary Sebelius sent a letter to states asking how each would like to participate in the high-risk pool program. The program was designed to give states the flexibility to carry out their own program, or have HHS do it for them. Specifically, states can:
Operate a new high risk pool alongside a current state high risk pool;
Establish a new high risk pool (in a state that does not currently have a high risk pool);
Build upon other existing coverage programs designed to cover high risk individuals;
Contract with a current HIPAA carrier of last resort or other carrier, to provide subsidized coverage for the eligible population; or
Do nothing, in which case HHS would carry out a coverage program in the state.
As a former Governor and State Insurance Commissioner, Secretary Sebelius understands the important role that states have in improving the health security of American families. Over the past several weeks, HHS has held several briefing calls and has been working individually with states to explain how the program will work and the different options for carrying out. Yesterday alone, over 350 people representing all 50 states, and Washington, D.C. participated in a call with HHS about implementation and the new high-risk pool program.
So far, 43 states have told HHS how they would like to participate; 28 have indicated they would like to run a high risk pool program, and 15 have said they would prefer that HHS administer the program for their residents.
Regardless of whether or how a state participates, the bottom line is that all Americans who meet the eligibility criteria will have the opportunity to join a high risk pool program.
More information on the high-risk pool can be found here.
Here’s a list of what states have decided as of 4:15 p.m. today:
States that intend to operate their own high-risk pool program:
Alaska
Arkansas
California
Colorado
Connecticut
District of Columbia
Illinois
Kansas
Kentucky
Maine
Maryland
Massachusetts
Michigan
Missouri
Montana
New Hampshire
New Jersey
New Mexico
New York
North Carolina
Ohio
Oklahoma
Pennsylvania
Rhode Island
South Dakota
Vermont
Washington State
Wisconsin

States that have elected to have HHS run the high-risk pool program:
Alabama
Delaware
Georgia
Hawaii
Idaho
Indiana
Louisiana
Minnesota
Mississippi
Nebraska
Nevada
South Carolina
Tennessee
Wyoming
Virginia http://www.healthreform.gov/forums/blog/blog_20100430.html

[Fridays Child]

98. I was just looking for this site.

Thank you so much for the link. I believe AZ will come onboard as a state that's letting HHS administer its program.

[nadinbrzezinski]

97. Sometimes the local hospitals will do "charity cases,"

as well as places like the Cleveland Clinic. It is generally good for PR, sad that we are reduced to begging for PR.

Also contact a local church, temple, what have you, and places like Family Services from oh the local Jewish community will have resources, and no you don't need to be Jewish...

And of course, the best of luck, and this is the reason why we need universal health care kiddies.

[Fridays Child]

99. Good ideas.

I'll check at the UofA Health Scviences Center and the Jewish Community Center.

[donheld]

100. I'm so sorry

:hugs:

[Fridays Child]

101. Thank you.

:hug:

[proud patriot]

103. Sending strength

I've been told that getting a lawyer when dealing w/ SS is a good Idea .

[Fridays Child]

105. Thank you. And, yes, that's what many here have said, as well.

:)