Advertising to Get Medical Care? How Did I End Up Here? Falling Into The Cracks of the Medical System
by Niki Wyre
If you are healthy, wealthy or insured you may not be aware of the cracks in our health system in the United States. I’m not even sure how I got here today. How I became a victim that fell into one of these cracks but I had to get it all out there in cyberspace.
Originally I thought up this image to poke fun at my situation but it really struck a chord with me so the blog kind of seemed natural to go along with it. I mean who would of thought that I would be on the internet broadcasting my lack of money, insurance and medical care?
“Broke and uninsured patient seeking competent Rheumatologist in Pinellas County Florida or Tampa Bay area. Must be willing to work with reduced payments, payment plans and / or big discounts for patient in desperate need of treatment. Free is even better. 😉 Must be willing to allow patient to share her case details and journey online in blog plus online social media community of 12,000. Must be knowledgeable and able to address Seronegative Rheumatoid Arthritis, Osteomalacia and Fibromyalgia. Pain management a plus. Patient willing to get transportation to surrounding areas if situation available. Patient can offer a semi sunny disposition, cool arthritis awareness blue hair, a pipeline to the online Autoimmmune Arthritis community and free advertising by blog mentions on her journey with your practice Can you help her? Interested parties inquire within..”
Well sadly as funny as this fake advertisement I created to describe my current situation is to see it’s completely true. So maybe it’s no longer fake and I will be sending it out to the world to advertise for medical care.
Here is my story:
Four years ago I could of been any of you. I was a full time employee in my family’s business, gotten engaged to the love of my life and had health insurance. Like so many people with complicated medical issues it took years to finally get my diagnoses just over 3 years ago. If I could be working I would! I worked with my family business full time for around 7 years and my having to leave put a hardship on them. I would of preferred not to do that and to spend the additional time with my family that I did while I was working. There is not a day that goes by that I wish I could still be a part of it.
My name is Niki and I’m currently 32 years old. Too young to have to give up an active life. Too young to go without medical care to slow the progression of my Rheumatoid Arthritis and other medical issues. Too young to suffer in silence. Feeling alone in the world I turned to social media and through the amazing fellow women I met with Rheumatoid Arthritis the idea or RA Chicks was born. As my health declined and I became more and more bed bound it has been my lifeline and a purpose was given back into my life. The wonders of social media gave me an online community that knew exactly how I was feeling. It wasn’t too long before I started rachicks.com, blogging, working on arthritis awareness projects, volunteering with both the Arthritis Foundation and International Autoimmune Arthritis Movement (IAAM) all from my own bed. I’ve received an award from Wego Health on the work with RA Chicks, going to be the arthritis walk honoree at the 2013 Arthritis Foundation walk, recently participated in a conference in Philadelphia ePatient Connections where I spoke and just this past month was spotlighted in an article in Arthritis Health Monitor magazine. I spend my days and nights advocating for others yet I cannot get healthcare for myself? Sad, I know.
Back in March 2010 I lost my health insurance. According to Humana they hadn’t received my payment which was completely insane as that letter was dated three days after the letter thanking me for my payment. After countless hours on the phone trying to rectify the error they basically told me that they couldn’t fix the issue and reinstate me. I’m pretty sure this “error” occurred to more people with excessive health issues as the new healthcare laws were about to be passed stating they could not discriminate against preexisting conditions etc. I never did receive that last payment back and they declined all my pending bills that should of been covered under that period so that was the start of my medical debt.
At that time I was lucky enough to have a wonderful Rheumatologist that had been the one that first diagnosed me with the Seronegative Rheumatoid Arthritis, Osteomalacia, Fibromyalgia, hypothyroidism, stress fractures, bursitis and tendinitis Say that all three times fast. This in on top of other medical conditions I had already been dealing with. Until the time she left her practice and moved across the country, I was able to keep up on my medical care in her office. She had discounted my exam fees, gave me samples when she had them, comped steroid injections etc. She was even trying to get me funding for a biologic as she acknowledged how rapid my RA was progressing. The only problem was after she left the new doctor did not do so and soon I was drowning in those bills as well and unable to afford the basic appointments.
Since I had been unable to work from October 2010, I filed for medical assistance, food assistance and Social Security Disability. I was approved for food assistance ($200 a month) and denied medical assistance. Why? I would not be applicable unless I was determined disabled by Social Security. So I wait. Over two years has passed since I have been unable to work. I’m currently waiting on a hearing to appeal my denial. It’s hard to prove a disability claim without test results, imaging and a doctor to plead your case.
Early last year after a lovely application process *insert sarcasm*, I was approved into the Pinellas County Medical Home program. This basically allowed me medical care, medication and tests at little expense of my own. Perfect right? Wrong. Apparently it seems that the county only approves one Rheumatologist who doesn’t believe in seronegative RA, bedside manner, treating women with respect, air conditioning their office and so many more to list. He wouldn’t address my Osteomalacia, Fibromyalgia or pain. He referred me back to my primary care who would then in turn refer me back to him. He would write a prescription for me to go to an occupational therapist to get my clawed hands evaluated, splinted and get therapy. I would take it to the county appointed clinic and be told they don’t cover that. So after fighting with them I would go back to the Rheumatologist and ask him for an alternative… to which he said nothing else will help, shrugged and turned his back on me. So I have been without medical treatment for my rheumatologic issues since March. Over the past 6 months more and more of my prescriptions stopped being covered or went from free to $10 each. Then this past month I found out my time period has expired and I have to go through the whole approval process… again.
So no treatment since March? What does this mean? I’m losing this battle physically. I try to be upbeat and positive when I can but this is really doing a number on me. If I walk over a dozen feet or so I need my rollator (rolling walker). More than a few dozen feet in a go? Wheelchair city my friends. I hate, repeat HATE, losing my independence in this way. I can’t push myself around in a manual wheelchair. My back, tailbone and neck have become so bad I cannot stand, sit or walk for any length of time. Its frustrating to say the least. Add in a big dose of depression and not wanting to be a burden on anyone, I spend a lot of time laid up in bed.
So here are the cracks in our health system cycle I fell into:
– I couldn’t get approved for medical assistance without Social Security certifying disability.
– Social Security wants more tests and doctor documentation to prove my disability.
– Without medical coverage or financial help I cannot get said tests or doctor documentation.
-Without approval financial assistance my monthly income will stay at $0 so I will not be able to afford said tests or doctors in near future.
-County assistance medical only approves one Rheumatologist who doesn’t address my medical issues so no treatment. They also wouldn’t approve certain tests, occupational therapist, and unapproved appointments for physical therapy plus joint injections.
-Without prescriptions, treatment and documentation I don’t get approved for disability and continue to worsen… see how this circle continues??
I find it appalling that this happens to so many of those out there with chronic conditions. Every single day I hear from someone else who is in the same type of crack in our system. Why can’t we fix these problems? Why should we be treated like criminals yet criminals get top notch medical care? I could get on my soapbox for days about that one. In America, criminals are considered innocent until proven guilty but those seeking help due to medical issues? guilty.. guilty.. guilty… until proven innocent beyond a shadow of a doubt. When I tell you I’m in pain I’m not looking for a high or quick fix just some relief from my daily pain running my life. I’m not a deadbeat or drug user or someone who is trying to take advantage of the system or whatever preconceived notions you may have about those seeking assistance. This might be a shocker to you all but most people that are looking for assistance… need assistance. Yes like any system there are those bad apples that will try to work it to their advantage but these are the exceptions not the rule.
So here I sit…er lay… typing this all up to go out into the wonders of cyberspace. I’m not asking for anyone to send me money or raise money for me on my behalf. I’m just looking for a kind rheumatologist or Rheumatology office that might be willing to help me out and work with me so that I can get some of my life back before Arthur (itis) takes anything else away. I want to have some relief. I want to be able to continue to use my hands to bring together this community or to work on my awareness efforts or even be able to hold my nephew and nieces without fear of dropping them or unable to due to pain. I want to be able to continue my plans for making a difference in the Autoimmune Arthritis community, be able to speak on their behalf, learn more each day and so much more. Can you help me? Do you know a medical professional in the Pinellas County or Tampa Bay region that might be able to help me out? Any help is greatly appreciated! I really need some treatment, definitely need updated imaging as I haven’t had those in over two years now and just need some relief.
Thanks for taking the time to read my story and take a look at my lovely little medical ad! Please pass it along if you know someone that can help me out. Every Facebook “share” or “like” helps. Every little tweet or Google + helps get the word out. From the bottom of my heart I thank you. It is greatly appreciated.
Looking for more blogs by Niki? Please check here.
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Hi Niki –
First, you’ve been a mainstay of my life since I found your site on Facebook. I was diagnosed with “storm onset” RA, set off most likely by an allergic reaction to cyclosporine in 2004, when I was being treated with Biaxin for an h pylori infection. It mainly affected my fingers, wrists, elbows and toes, though no joints went unscathed. Luckily, I was working at home for one of the world’s then-most handicapped friendly employers American Express. I self-rehabbed and was even able to work from bed if necessary.
When my job was outsources in 2008, I quickly picked up another, but the insurance wasn’t as good and it was a 90-minute car commute each way. That job, at the HG of a major toy retailer, downsized in 2010. I managed to get back in at Amex with my seniority intact, but my RA severity increased.
At the end of January of this year, I was laid off again, and the Cobra payment was high. Three weeks later, my father (who, along with my mother and aunt, also had/have rheumatoid), was diagnosed out of the blue with renal cancer. I moved in with my parents to help take care of him, even though my RA and pain were wildly out of control. He died on June 28 at a hospital near their home in suburban Philadelphia; less than a month later, I went home to my house in coastal central NJ thinking I had a stomach virus. I did not – I had acute cryptopathic hepatic encephalopathy with renal failure and pneumonia. Basically, my RA attacked my liver and kidneys, shutting them down, and an incorrectly-inserted nasogastric feeding tube that missed the opening for my pouch from my gastric bypass fed liquid into my left lung and stopping my heart twice. I was on a ventilator and about six IVs. I woke up briefly at my local hospital’s ICU and then at Thomas Jefferson University Hospital’s Medical ICU. It had been about six weeks, and I lost about 50 pounds.
I, too, ended up being uninsured – my father had a series of strokes during his cancer treatment and with two late payments, my Cobra administrator had cut me off. Due to the fact I was receiving unemployment, both hospitals are writing off my combined $960,000 hospital bills; the physicians at my local hospital are another story.
I just did my final disability exam last week (postponed by Sandy) and much of it is based on my hospital stays. My new rheumatologist runs a fabulous full-service clinic where imaging, prescriptions and help with disability are handled. I wish I could fly you out here to be treated in clinic by her; she could at least treat you while also providing documentation for disability.
Stay strong – Florida and California are two of the toughest states for disability. If Incan help in some way, please let me know!
You may want to search through the links at the site below. I have no idea if any of the organizations help with totally free meds, although they do say they offer help. Maybe one of them under FL may be able to give you the name of a place that really could help you with free meds. Good luck – my thoughts are with you.
http://www.reachbeyondra.com/help-for-arthritis/default.aspx?v=RA336