I have to start getting ready for work in an hour and I haven’t slept at all! I’m exhausted and in horrible pain:( I wish I didn’t need my health insurance so bad, so I could just go on Disability. Several people, including my boss, have told me that I need to go on Disability. I really don’t know how much longer I can continue working, even with the reduced hours:(
For those on Disability…Is it true that you have to wait 2 years before you’re eligible for health coverage once you’ve been approved for Disability? If this is true, how did you get by without health coverage? Any advice or input would be greatly appreciated:)
There is a light at the end of the tunnel…I have an appointment at the end of the month with a NS that specializes in Chiari and Syringomyelia. But, at this point, that feels like a lifetime away and there is no guarantee that the surgery will improve my pain and other symptoms. I’m not sure what I should do.
I feel for you. I'm not as bad off as you but I too struggle to work. I wake up 100 times a night because my legs or arms have gone numb or the pain is too much. It takes a lot of out of you! If it wasn't for the health insurance I would quit and try to find something part-time!
I'm not sure about the two year wait, I thought if you got on SS you automatically got coverage. Seems kind of crazy that they would declare you disabled but not give you health care? Not to say that the government isn't that crazy! lol
i am on disability and it took me a couple years to get medicare. you might be able to try for disability and see if you can get medicade till your medicare kicks in. i applied for disability in 08,and my medicare did'nt not start to 2010 . but that might have changed
First off: (((Hugs))) I understand where you are coming from. Working last year took everything I had. For about six months, I went home for a 2 hour lunch so I could take a nap.
I have to say that I am almost 7 mths post op and feel great. I am able to work a full day and take care of my 4 girls.
Making the choice to have surgery was the best thing I did last year. After seeing 3 NS here in TX, I went to Dr Oro in CO. My symptoms are almost no existent compared to what they were last year and I have my life back.
I'm not familar with disability but I don't think there is a 2 year wait. Hopefully someone more knowledgable about that will respond.
Hang in there and remember we are all pulling for you.
Its 2 years from the date your declared disabled. I went out of work in 2010. Got my SS this year. they used the date of 2010 as date of disability. so i can use it this year. but im keeping my health plan from work. i went on long term disability from work, as i filed for social security. if you dont have a long term disibility plan at work then i would search the internet and purchase a policy. it saved my home and credit. if on disability fom work i dont believe they can take your health care away. i kept my health plan and still have it. they cant fire you either in disability. you can look up those laws on the internet.
Go ahead and apply for disability while you are working. In Va. I didn.t have to wait. Plz message me any questions you have about insurance. We will get you approved, hopefully without a break in coverage.
I had applied for SS before my Chiari and Syrinx dx. At the time they were calling it Encephelopathy (disease of the brain.) I was denied and have a lawyer working on trying to get me approved. Most cases are denied the first time around, so prepare for that. I was told by my lawyer (a former disability judge) that it is always best to apply with a lawyer. Even though they take around 1/3 of the back pay, it may be worth contacting one before applying. Good luck!
I rec'd SSD January of this year. I was approved in 3 1/2 months. In NY, you do have to wait 2 years for insurance. I'm on my husband's insurance so I'm good for now. You may want to look into insurance from your state.
I can't help you with the disability portion, but are you signed up for intemittent FMLA until you get disability? My NL and Rheumatologist ask me every 6 months if I'm ready to go on disability...I'm not, but in the meantime they signed FMLA paperwork. This way if I am having a bad day or week I am covered through work. I still get paid for the time I miss and work can't "let me go" as long as I'm covered by Intermittent FMLA. My boss actually suggested I do it (I'm lucky...my boss is AMAZING!) Just an idea to maybe help you out until you get disability.
I am on disibility but im still working because what i get is not enough to support me. I really wish i was able to quit my job. Its not hard work i am a teachers aide at school and i think that it is the stress that keeps my head hurting. It didnt take me long to get my disibility started cause i have another illness called pseudo tumor cerebri which is fluid on the brain and it caused me to go blind so i think that is why i got mine started so fast but the insurance i dont have cause of right know im still working. if i were you i would go ahead and get my paperwork started and then you canask aboutthe insurance. Good luck!!!
Thank you everybody for the great advice and kind words:) I really do appreciate it:) I definitely need to start looking into my options. I’ve been dealing with constant pain and many other symptoms for almost 5 years now…the last year has definitely been the most challenging though. I know many of you have dealt with chronic pain for even longer…I don’t know how you do it!
Tracy- I really appreciate your offer to help:) I just may take you up on it…I need all the help I can get!
It took me a long time to apply for disability too. I didn't want to admit that I was even though I couldn't work. I don't know how you do it. Your in my prayers. It took me almost 2 years to be approved. I was turned down twice and finally got a hearing with a judge. It was difficult but he believed me. You can gp down to your local Social Security Office and ask. At ours you take a number and wait for the next available clerk. They were very nice here in my state. We also made the mistake in the beginning looking in the Yellow Pages for a Lawyer. My first lawyer was horrible! We finally ended up asking at the SS Office for a list of local lawyers that do alot of cases. We found an amazing firm that way and they helped us so much. As far as the surgery goes if you are having such severe symptoms the pressure on your brain, spinal cord, brain stem ect. is already doing some damage. Thinking about surgery is daunting and scary but necissary for most to stop the progression.
Wendyanne- Yeah…I think I’ve been in denial about it too. Several people have told me that I need to apply for disability, but I wasn’t ready to accept it yet. I had the attitude that if I just kept going, it would get easier…problem is, it has only gotten harder. I’m still hopeful that the NS that I will be seeing on April 30th will be able to help me, but who knows how much damage the syrinx has already done. Thank you for the lawyer tip!
Crystal, I fought and fought for 10 years after the day I stopped working before I had the courage to apply for disability. I was so beaten down by people not believing me I didn't want to go through more humiliation. The biggest part was the idea in my head that filing and admitting I was disabled was 'giving up' I really wish for myself and my family I had done it years before I did. When I first had symptoms in 1996 and then was diagnosed and had surgury in 2001 so few people knew about Chiari so talking to doctors or therapists was always daunting. Atleast now there have been studies and doctors that know our symptoms are real, even though they are hard to find. I have always felt that I was a sort of guenea pig for every doctor or therapist I have seen and I have tried to educate them as much as possible. Good luck Hon, You are just standing up for what you need to take care of yourself. You have worked for years and payed into SS. Just make sure you find a good lawyer. Some say you don't need one until your turned down the first time. Chances are you are going to get turned down at least once. I think you have 3 tries. Mine went down to the wire and in a small court room and judge. The lawyers just took alot of stress off even though we had to give them a third of the intial judgement. I would never have gotten it with out them. Good luck I am saying prayers for you...Wendy
Thank you so much for the kind words and encouragement:) It means a lot:) I had always been the over-achiever type, so I have a really hard time admitting that I need help. This is definitely something I need to work on. Thank you again!