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Posted By : celebrate life - 3/17/2017 11:40 PM
This is NOT intended to become a political discussion, but more looking to see how passage of the new health care bill might affect your treatment options, as it is going to have a HUGE impact on my life if it remains as currently presented. I get federal assistance with my monthly premium and I only work part time. I love my job, but without the assistance, even with a tax refund, I can't afford to stay on my health insurance. I'm the wrong age and income, being in the bracket that will be charged five times more than younger folks. I also live in a rural area with limited providers and few insurance companies contracted with our local providers. With my RA, I can't physically work enough hours to get a job that offers a group plan, even if I wanted to quit my current job (which I don't).
Being pragmatic and a planner, it looks like full disability is in my future. But I'm sure going to hate to go down that road.
Beth

Post Edited (celebrate life) : 3/17/2017 11:53:03 PM (GMT-6)


Posted By : Alice22 - 3/18/2017 9:56 PM
Hi Beth,

That is a good question - I don't know if anyone knows the answer yet. All I can say, for what it's worth, is that I wish I had gone on disability when I had the chance; now I can't because I started collecting social security at age 62. I quit my full time job a few years ago to help take care of my mother, but also because my job was getting too difficult for me. Now my mother has moved back up north and I'd like to work part time but I don't know what I can do anymore. I guess what I'm saying is that if you have to go on disability it's better than the alternative of not having your health care needs met. But lets keep our fingers crossed that it won't come to that and you can keep your job and insurance!
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum)

Posted By : Don_D - 3/24/2017 9:25 AM
Beth,

I hope that it doesn't come to this for you but if it does make sure that you have your ducks in a row prior to starting the process. The single biggest contributing factor to this I believe is having extensive medical records and a good relationship with a Doctor who is supportive of you and will help you with the process.

One thing to consider as well is that if you end up going on disability you can still work part time if you are able without disrupting your benefits. It is something to think about. I know that a lot of people in rural areas are having a really hard time right now with only having a single provider in their areas and the premiums going up considerably each year. I know people who are paying more in monthly premiums than their mortgages sad

I don't know what this new HC bill will entail, everything I have read has been murky at best. I hope that it is not just an end run around providing care to those who truly need it. I have been and will continue praying about it.

Take care, -Don

Posted By : celebrate life - 3/25/2017 12:35 AM
Thanks for your reply Don! Looks like everything is staying the same, for near future at least. I'm off on sick leave right now waiting to get an appointment with my orthopaedic doc. I posted about my persistent foot flare on another thread.
I had heard before that you can work part time and keep benefits. I would most definitely want to try that should the time come. I love my job. Fortunately, I have the best GP anyone could ever ask for, who would help me get on disability right now if I desired. Between her and the ortho doc, I'm sure I'd eventually qualify.
I remember it took almost two years for my husband to get on when he developed prostate cancer with metastasis to most of his bones and lymph system. I was so scared I would be unable to work full time, and we would have lost both our insurance!
We live in one of those rural areas with few providers. If I didn't get federal assistance, I would be paying most of my salary for my premium!
Appreciate all your input.
Beth

Posted By : straydog - 3/25/2017 6:03 PM
Beth, when you get a chance go to SSA.gov & read up on disability. You cannot work & try to get disability at the same time. Their definition of disability means you cannot actively work in any type of employment, not just your field. In other words, you cannot work part time & file. They have an excellent site for disability.

SSA does have a return to work program for people that are on disability & say their condition improves & they feel they can do some type of work. But this is for people that have been off for some time collecting benefits. They did have a clause that you could only work for 18 months & still get disability & after that you lost your disability. The return to work program has several clauses & stipulations that has to be met. At one time if a person wanted to try & work you cannot be employed doing the same type of work you did when you became disabled. Lots of things you need to be aware of here.

Your drs do have to be behind you 100% because what they write in your records is what the determination is initially based on. SSA may also send you for an independent exam to see if that dr thinks you are disabled.

It can be a long & drawn process. A lot depends on your age & education. The vocational experts always try to find some type of work a person can do. Personally, my experience with them has not been a good one. We use to help our clients go through the SSD process some times.

Anyway, please do check out their website, it is very informative. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : celebrate life - 3/25/2017 10:43 PM
Thanks for the information Suzie! My hope is to work until I can no longer do it, much like what Don has done. But here I am, off on sick leave because I can barely walk. Argh!

Posted By : Don_D - 4/23/2017 6:53 PM
Beth, that is how it all began for me. I was having flare ups so bad I could not walk (let alone sleep at night) and going into the office was so exhausting that even by the time I arrived I was completely wiped out. I was working from home a lot as well but my cognitive ability and memory was and even now is so much worse I was having difficulty doing my job at all.

For a time things got better but not anywhere close to 100%. I was struggling every day and coming home completely wiped out and exhausted. Wondering how I was going to make it the next day. I had no life outside of work because of this and when my Doctor suggested that I go on disability she also told me that my quality of life would improve some what hopefully because I would at least be able to spend my energy on things that mattered like my family.

I don't know if you have ever heard the spoon theory but it really hits home for me.

/en.wikipedia.org/wiki/Spoon_theory

I hope that you are feeling better but if things don't improve then make sure that you speak with your Doctor and tell them what kind of difficulty this is causing for you in your profession and life outside work. Also, make sure that when you see them you are taking your time and writing everything down you can to help with the process should it come to that.

SSDI is going to rely greatly on your Doctors records if and when you have to file for disability so making sure they are well documented as well as supportive of your claim is a high priority. It is a lot of paperwork and a lot of info to gather up and submit. I see 5 doctors on a semi regular basis so you can imagine how getting copies of those records was. It is helpful though if they are all in the same network like a Franciscan provider etc.

It can be done though. My wife helped me and together we were able to apply online and go through the process with no outside assistance. The lady at the SS office nearby was very helpful in answering any questions we had as well. I was approved with no difficulties. I expected that I would need to appeal my claim (because of all the stories I have heard) but I did not. When I received my mountain of medical records I became very depressed looking them over as well as felt depression over having to go through this process at all. It was an eye opener seeing all that.

I am very grateful that we have a support system in place for people such as us. It is also a good reason when one finds they have been diagnosed with RA to if they are able to purchase any disability insurance available through our employers. I paid for this for 20 years and when I needed to use it, it was well worth the money I paid for it all those years.

I hope that you are feeling better Beth. Take care, -Don

Posted By : celebrate life - 4/23/2017 10:32 PM
Hello Don,
It's so good to see your post. I got a referral to my ortho guy and he gave me a cortisone shot in my ankle that got me back on track. It took a little longer for the swelling in the sonovium on the top of my foot to settle back down, but it's finally better too. That was my longest flare to date, and I imagine a precursor of things to come. It was brought on by stress at work. Most days aren't that way, fortunately.
I know what you mean by all the docs. Before RA, I didn't even have a GP. I just went to the clinic when I was sick enough to go. I saw the dentist for teeth cleaning more than a Dr. LOL...Oh to be young again.
I now see my GP at least once every three months, and she is keeping very good notes. She is aware that my days of work are limited.
I hope you are having better days Don and are finding more family time and enjoying the Spring.
Beth

Posted By : Scott007 - 4/24/2017 2:15 AM
Hi Beth - Please read my thread. There is hope. Do not despair.--Scott

Posted By : Don_D - 4/24/2017 8:59 AM
Well, you certainly have a lot going on. I hope that your husband is doing ok?

Boy, the synovial inflammation is a painful deal. Mine got so bad on my Achilles tendon that it gave way and slid down the tendon like a loose sock and rumpled up at the bottom. I had to have it removed sugically. Hope you don't end up going through that. I am glad to hear that the injection helped and things are better now though. I never had much luck with those for some reason. They seemed to be hit or miss.

A good Doctor is such a God send. Mine was a real lifesaver when I needed him. He took on a huge amount or work with me that is for sure. smile It's crazy all the different Doctors I have these days but things have somewhat settled down and my visits are every 3 months now rather than each month as they were there for quite a while. It's now a matter of managing all of it.

I am doing better it seems. My flares are less intense now and pain levels have decreased even a little bit. I have been dealing with a lot of fatigue but I just take things as they come and do what I can. It helps that the weather is finally turning up here now and things are growing again. Lots of rain but our bulbs are coming in finally. smile

You might keep an eye on Scott's thread. I have been reading a bit on the hypothesis behind what he has posted and I think there is merit to it. I plan to give the potato starch a solid try and started yesterday so my hope is to read up on it and post any progress or lack of in the original thread. I really have nothing to lose with it and having been on a very restrictive long term diet in the past that yielded little results so I am curious to see if a lack of this starch is a contributor (or maybe even a cause?) to our disease. I am interested to hear what my Doctor has to say as well when I speak with her. She seems pretty bright.

Anyways, my mind is constantly wandering these days so sorry for being all over the place. Glad to hear you are doing better. smile

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