Is there any real help out there?

[wolfewispr]

I've had wegeners for 2 years and 6 months. it took them 15 months to get a diagnosis and several doctors before i found one who would look for anything other than the normal stuff.

It first presented with pulmonary embolism and pneumonia on February 27th 2010.

I have had two pulmonary embolisms (embolii?) one in each lung.. a blood clot in my spine which went undetected for 3 months. a leg full of blood clots, severe sinusitis, kidney dysfunction (they don't process fluids properly and i now have kidney pain and edema +2 from the excess fluid.) eye pain and blurred vision, hoarseness, Severe joint pain, and Severe Lung pain and difficulty breathing.

I tried working for 11 months but ended up being threatened with termination for missing so much work running back and forth to the emergency room with severe breathing difficulty and joint pain.

I filed for disability, applied for medicaid. i'm still fighting for disability (a year and 2 months) and have been denied medicaid 3 times.

I have searched everywhere possible and found absolutely no help at all. I've been selling things to pay for minimal medical care, which includes blood thinners, pain meds, furosemide to assist with fluids my kidneys wont process, albuterol inhaler and suspension liquid for the nebulizer.

My Doctor tells me i need proper medication...methotrexate, cyclophosphamide, or rituxan but there's no way i can afford it. even with my Doctor writing a dire need letter to the social security administration telling them i need disability and medical coverage (medicaid or medicare) or i will have another fatal episode.

I've called every clinic i could find. there's no help that iam capable of finding.

I'm almost out of things to sell to help pay for blood thinners and other meds. and Social Security isn't showing any signs of letting up.

I don't have family that can help financially.

I have two children, i lost my dad when he was 47 so i know already what my children will go through. Please!!! is there any real help out there?

anyone know of any assistance?

Iam now 41 years old

[annekat]

I was hoping someone would respond to you by now, who hadn't seen your posts on that other thread. Maybe they aren't seeing it because the category you posted under is way down on the list. Since the site was hacked and rebuilt, things are a little different and it may not be as easy to see new posts. In any case, by my replying, maybe it will help get someone's attention who hasn't already given their input into your situation.

[mishb]

I'm so sorry you have to go this without any help.

I have been reading your posts but am unable to comment in anyway about the healthcare system in USA or your Social Security, however, I really thought that everyone, in some form or another, was able to get the medical help they required...........obviously not. This really is a disgrace.

Have you tried enlisting the help of Legal Aid......do you have such a thing over there?

I really am sorry and if things get worse, please don't hesitate to get to the ER.

[wolfewispr]

I'm so sorry you have to go this without any help.

I have been reading your posts but am unable to comment in anyway about the healthcare system in USA or your Social Security, however, I really thought that everyone, in some form or another, was able to get the medical help they required...........obviously not. This really is a disgrace.

Have you tried enlisting the help of Legal Aid......do you have such a thing over there?

I really am sorry and if things get worse, please don't hesitate to get to the ER.

I have legal representation. the attorney iam using is the best around here... and even he is baffled.

I have no choice but to see it to the end whatever that ends up being.....

[KathyB]

Hopefully you have the right folks on your "team!". You are in the right place (our forum!) for a lot of TLC! Wish you well!!

KB.

[wolfewispr]

Hopefully you have the right folks on your "team!". You are in the right place (our forum!) for a lot of TLC! Wish you well!!

KB.

I finally got approved for disability yesterday!!!

I was told it could take 2-4 months to see the first check and medical wont start until october 2013... but it's a start. maybe i can use the checks to help afford a little better medical care until i can get medical.

but after fighting for 1 year and two months for disability it's a welcome benefit.

I can't do it it real life but in my heart i'm doing the happy dance!!!! GO ME, GO ME IT'S YOUR BIRTHDAY!!!!
finally disability can stop sending the ugly condescending denial letters....

[KathyB]

Wow!!! Congrats and a special for hanging in there!! Hope to see some positive results for you!

KB

[annekat]

I'm very glad to hear this! I hope you are getting some retroactive benefits, too. And I hope the first check comes sooner than they say...

[wolfewispr]

I'm very glad to hear this! I hope you are getting some retroactive benefits, too. And I hope the first check comes sooner than they say...

I checked with the attorney, i'll be getting backpay from november of last year til now. seems they keep the first 5 months of disability backpay now.
doesn't make sense to me but I'm just glad to finally win.

I wish they would go ahead and let me have medical. but they wont. so i'll have to do what i can out of pocket til medicaid happens. but certainly having an income will help.

i hope to get the first check sooner too... I'm about 2 and a half months late for having my blood checked....just been taking the blood thinners as prescribed. bout to run out of those too.

but Thank God!!! the fight is over.... I think i'm going to frame my approval letter lol...

[wolfewispr]

I checked with the attorney, i'll be getting backpay from november of last year til now. seems they keep the first 5 months of disability backpay now.
doesn't make sense to me but I'm just glad to finally win.

I wish they would go ahead and let me have medical. but they wont. so i'll have to do what i can out of pocket til medicaid happens. but certainly having an income will help.

i hope to get the first check sooner too... I'm about 2 and a half months late for having my blood checked....just been taking the blood thinners as prescribed. bout to run out of those too.

but Thank God!!! the fight is over.... I think i'm going to frame my approval letter lol...

OH....And something else i found out about today... there is a website that allows people to do fundraisers online for those needing medical help. it's called giveforward.com certainly may help someone.

It wasn't possible for me to use it because i don't have anyone who can do a fundraiser for me.
but maybe it will help someone else.