Hi. I am a 49 year old female from the United States. I was diagnosed with Rheumatoid Arthritis in 2014. I have also been diagnosed with Major Depressive Disorder, Anxiety, Anemia, Carpal Tunnel, Peripheral Neuropathy, and Asthma. I was being treated for all of my health issues until 2018. That's when my Medicaid was terminated (due to my minor child moving out to live with her half sister). So now I am not eligible for Medicaid in the state I live in. I have not seen a doctor since 2018, and I have not had any medication. I have applied for Social Security Disability, three times, and I have been denied three times. I got a lawyer to help me. But, with this d*** Corona virus and all the chaos from the protesting happening, I feel as though I have been forgotten about, once more. My depression has taken over my life, just like the RA and inflammation, have taken over my body. There's days I can't brush my hair, wipe my a** when I use the bathroom, I don't cook anymore, my house is a wreck, the laundry, the list goes on. I live alone and have no car. Well, I have a car but it's not running. I know I could get help with the medication, but I can't take it without seeing a doctor and having all the blood work done. I'm Hopeless...
Hopeless...: Hi. I am a 49 year old female from the... - NRAS
Hopeless...
I don't know how to respond other than to say I am really sorry your situation is so very difficult and you feel you have lost hope. In the UK we complain about services, attitudes and now problems during Covid but at the end of the day the NHS is free to all. I hope someone from the US reads your post and can offer some ideas.
Yes, I also hope that some US member will respond to you. I don’t understand the US health care system at all and find it hard to comprhend that there is nothing available to help people in your position.
Your situation sounds awful, so much sympathy.
Welcome RebellousRed . 💐 I’m sorry that I can’t help on how to navigate the complex healthcare system where you live. What I did want to say is that you’re not alone and you’ll find so much kindness and support on here, as well as information.
I can’t even begin to imagine what you are going through and I really feel for you and hope someone from the US who comes on here can help you. Are there any church or other charities or groups could approach who might be able to help or at least point you in the right direction?
I just wanted to say hi and I also hope that someone in the US can give some much needed advice. I am so sorry to hear what you are experiencing and really hope someone from the US can give some advice.
creakyjoints.org and ra warrior are both really good US sites for RA & might have more idea on the healthcare system there, if you get no joy here. So sorry you’re going through all that, sounds awful x
What a nightmare you are going through, I feel so sorry to hear what you're having to put up with. It may be all the stress in your life that is making your RA so much worse. Do you not have any friends nearby that could help you? I really hope you get a lucky break soon. Some good suggestions on here about approaching churches or other charities or groups to see if they can help and as Kerensa says maybe approaching creakyjoints.org and ra warrior to see if they can suggest anything. All the best to you RR and let us know how you go. xx
I’m so sorry to hear about your plight! I am also in the US, have RA, and have had to navigate the world of Medicaid and lack of health care, but not for near as long. I’m much younger, and have had RA much shorter. I actually developed it mid-college and had to drop out. I assume you have an income of some kind of Medicaid won’t take you? If you have any family/friends/connections/ or even can just hire a little home help it might go a long way. If you can’t get prescriptions because you can’t afford a doctor, a tumeric extract called curcuminoids have majorly helped my inflammation, as well as fish oil. If Txx-free (TXC? THC? Psychotropic ingredient filtered out ) hemp oil is available in your state, it’s a strong and very effective Pain killer. I eat a clean diet, and I never have the energy to cook, I just get things I can microwave (frozen veggies, GF oatmeal) or bake whole (like an entire side of salmon at once).
Because of covid, a lot of places are delivering groceries and everything, but I guess you probably know that.
Most of all, I’ve leaned on family a lot to help me. When this first happened in college, I used to get friends/partner to help around the house and family to help me pay for things.
I assure you there is hope, there are people who want to help you somewhere, there’s people who love you, or at least strangers who care... there’s hope.
one last thought, if you can’t get Medicaid cause you don’t qualify, but you can get other healthcare, have you looked at health-shares? Like ministry program etc? A lot of them are contingent of some religious affiliation, but probably not all. They are often cheaper than traditional insurance.
Thank you for responding to RRed. You understand the US whereas it's a mystery to us in the UK.
Such a helpful and caring post. I'm sorry to hear you're going through this too. x
Reading your reply makes me realise how lucky we are in the U.K. with the NHS. It’s hard to imagine needing medicines and not being able to afford them or even having to take curcumin as a substitute. Over here things like that are taken as an add-on by people already taking meds’ or by people who don’t need meds but who just want to help themselves (my husband)
Not to be able to get the basic meds you need for RA or anything else is unthinkable to us.
I'm in the US Rebellous Red, but know very little about Medicaid. I understand that it is best to get an attorney for your next application for Social Security Disability. Please don't give up. The political climate makes it very difficult for the disabled but might change with the next election.
I'm in the UK but I hope so for the sake of people like RR and others. x
Oh gosh. That is awful. I can't understand how you could be left to suffer like that. I agree that you should try a local church or a support group. I can't suggest anything else as I don't understand what happens in your country. Sending hugs and prayers that you will find help soon. x
Hang in there! Have you joined Inspire forum in the US which is connected to the American Lung Foundation? There is lots of good support and advice for local US people like you. I live in Australia and am a member of Inspire and Healthunlocked as there is no similar online support group in my country.
It is so important to keep communicating with everyone. We all learn a lot from each other. Best wishes
Dee
I too, am very sorry to hear about the horrible position you find yourself in and hope that you get advice and help soon. The Rheumatoid Arthritis Forum on facebook is mainly U.S. citizens. Their posts are very knowledgeable about your healthcare system and they give useful advice about different insurance schemes and even free treatment from pharmaceutical companies. I hope that you feel better soon.
I’m in the US. I don’t know how your state works but we can usually find help through the VNA, Visiting Nurse Association. For food And clothing assistance, try your local Catholic Church and get the number for their St. Vincent de Paul society. Also try your local Catholic Charities. You don’t have to be Catholic to get assistance. There should also be many local county agencies who could point you in the right direction. You have to get busy and help yourself a bit. Though it may be hard, just get started. Start with the VNA. Things will begin to fall in place for you. Sometimes you find help where you least expect it. Good luck to you.
Hi RebellousRed, so sorry for what you’re going through.
We are going to need to cheer you on to get up and get going to advocate for yourself. Life is worth the living and you’re not alone. We all understand the physical and emotional suffering that goes along with RA. You may wish to consider reaching out to a crisis helpline. Depression goes hand in hand with constant physical pain. You don’t need to be so depressed as to be suicidal to reach out to a crisis helpline:
suicidepreventionlifeline.o...
You don’t say what state you’re in — I’m in WA state.
I believe that since the implementation of the Affordable Care Act (ACA also called “ObamaCare”) each state has to offer low-cost basic health care. If you lost Medicaid coverage, you should qualify for a special enrollment in another state subsidized low cost plan.
If you google “basic health care plan” for your state, you’ll find there are all kinds of resources you can investigate to get the help you need. You can also contact an independent health insurance broker in your community. Their services are free and they may be able to help point you toward the best resource for your health care needs.
Best of luck to you. Don’t give up. It’s not hopeless. Here’s a loving boot in your backside and a big hug to get you going.
PS - to all of you who are not in the U.S and have NHS — count your blessings.
I have spent HOURS and HOURS of research in the past few weeks just trying to select the best “supplemental plan” to Medicare which I will be moving to October 1. The supplement “Part G” plan will cost me about $200 per month, on top of the $146 I will pay for a “Part B” to Medicare. I will also need a “Part D” at about $75/month which covers medications only, but limits coverage for “tier 5” medications such as Rinvoq, a biologic med (that is billed at $5,200 per month) which I currently take daily for RA. Once I go to Medicare, my out of pocket costs to stay on that drug will be several thousand additional $$$ each year. I am researching other options but have already tried and failed all the less expensive drugs.
My husband and I spent over $35,000 in health care premium costs and out of pocket medical costs just last year. We are watching our retirement savings quickly vanish into thin air. 💔
My heart breaks for you I hope you find relief from someone soon 🌹
As you Canadian neighbour to the North I feel incredibly badly for the struggles you undergo to get proper medical care when uninsured. Thank you to the other Americans for imparting you’re knowledge to Rebellious Red. I hope you can find the help you need.
Hey! I'm 44 with a ton of health problems plus sero-negative RA in the US. PM me so that we can chat about how to work through the red tape!
I realize that I am responding to an old post, and I hope that you have found relief since.
The key to disability is not just applying but following the process. Most people will get shot down when they apply. I did. You have to appeal the decision. If that fails, you can request that your case be reviewed by a judge. Ultimately, you can sue. Simply refiling applications and expecting a different result doesn't cut it. If you follow the process, there is a great chance of success.
There are two parts to Social Security. If you fail to qualify for disability, you may qualify for SSI. If you qualify for SSI, I think that you automatically qualify for Medicaid. SSI doesn't pay squat. You can't qualify if you have much more that a home and a car. But, it is an option.
If you are currently working, you demonstrate that you can earn an income and likely won't qualify for disability. If you are not taking medications, your disability won't likely be considered serious enough to qualify. You have to have so many work credits to qualify. If you don't have that, no need to apply for disability. You're a relatively young person, and that works against you for disability.
Keep in mind that even if you qualify, there is a five-month waiting period from the time you are considered disabled. Then, there is a two-year wait for Medicare. There are limits on the family benefits based on your earnings the year before you were considered disabled. With the recent changes to premium subsidies, you might be better off with ObamaCare, if you have some income or assets to support yourself.
It doesn't much matter if you make the initial application yourself or through a lawyer or through a service. I used a service, Allsup, because it was provided to me at no cost through my LTD insurance. It's an automated process for the application and appeal. There is little human contact. After that, the lawyers get involved. If you fail the appeal, you definitely need a lawyer or service after that. The cost is the same. I'd rather use a service. You have a little more control.
I was fortunate enough to win on appeal. However, the service I used informed me that the SSA informed them that I was rejected. I had already filed for a review before a judge when I was alerted by my bank the day after my 60th birthday that I had a $30,000 deposit. My service couldn't explain it. About two weeks later, I received a letter from the SSA stating that I met the medical qualifications and was under review for non-medical qualifications. About 3 weeks after that, I was officially notified with an "Award" letter. I think what happened was that I did not qualify initially because I was under 60. When I turned 60, I qualified. There are certain magically ages, 50, 55, and 60, where the standards are lowered, I am told by someone who worked for Disability. Unfortunately, you are not near any of these brackets.
The key is persistence. However, I hate to be negative or discouraging, but from the limited information provided and due to your age and circumstances, your chances don't appear to be good for disability. Depending on income and assets, you might qualify for SSI.
Lactose free meds?
Cancer versus RA the battle begins
people can't see pain ????
r/a suffer
Serositis and Hypotension anyone?
