If things went easily, I would have seen them again months ago. Silly me underestimated the battle with the insurance company and their denials...
“Welcome to Florida...” “Health Insurance in Florida will do anything to deny...” “The insurance will probably deny the treatment...” “You don’t want to pay out of pocket because you will go bankrupt...” “The big teaching hospitals can get away with more...” “The insurance will claim its an experimental treatment and none the of the current studies are good enough for them” are all things I’m beginning to hear over and over from the new practitioners I’m meeting.
I did the 6 weeks of PT the insurance demanded and it my pain increased (because of the PT specifically or the now 2 lidocaine infusion treatments I have gone without because of insurance BS who can say, probably both) and the PM doc said he wasn’t surprised. (Neither was was my Physical Therapist).
At least when I left PM, he took copies of my insurance denials and said he would work on the stuff right away (I think I was his last appointment of the day). He said to check back in a couple days to see if progress has been made. I asked how much time I should allow before I start being a real pain in the ass to everyone if I haven’t heard stuff, a month? “No hopefully in 10 days we can do something.”
I can work with that. Even though whenever I call his office, they seem pretty disorganized and “have nothing in my chart”.
It still feels a little shady that in order to get the the lidocaine/ketamine infusions they have to make it look like they are treating something else in attempts to get it covered. And my preference would be to stay with Lido, which was working, instead of doing ketamine, he did say if ketamine doesn’t work we could go back to Lido. (He prefers Ketamine over Lidocaine, and thats not been uncommon from the limited research I’ve been able to do).
Been on prednisone for a few weeks now for my uveitis. The inflammation seems to be coming down, but those side effects sure have settled in. They’re not severe, but I could also do without the insomnia (which triggers migraines), increased appetite, etc. Thankfully, my weight still is on the slow downward trend. Clothes I bought a few months ago, are getting too big. Small victories.
Our mission is to increase awareness of patient assistance programs and boost enrollment of eligible individuals. We offer a single point of access to more than 475 public and private programs, including about 200 programs offered by biopharmaceutical companies. We’ve helped millions of Americans to get prescription drugs for free or at very low cost.
PPA is a Free Service
Other companies may offer to connect consumers to these same assistance programs for a fee – some of which may use our name without our permission. The Partnership for Prescription Assistance will help you find the program that’s right for you, free of charge. We will never ask for payment information.
I hate filling out intake assessment forms. I’m doing one for PT right now (a requirement in order to get authorization for the MRI so I can continue the established treatment I had before switching to this insurance company that the poorly informed sales reps said I could continue because it’s a transition of care). The PT prescription is for my lumbar back so I have to fill out the “Oswetry back disability index”
Instructions say its to help the therapist understand how my back pain affects my ability to manage everyday life and to ONLY mark one box.
When you have multiple sources of chronic pain, the back specifically may not be the only or most limiting factor, but marking boxes strictly related to my back gives a very false sense of my ability to manage in everyday life. For instance, it’s not because of my back that I use a cane, but not marking the box that says I walk with a cane is completely false. What do I do? Especially if this is one of the tools used to justify to the insurance company anything in the future...
I hate questions about my social life. The pain is the initial limiting reason for my social life, which then spiraled into me moving back in with my mom away from my life in NYC, and now eventually 1200 miles away. What’s the appropriate box for this one?
Also, I can be a bit sassy when they ask my goals for therapy at this time. My response: satisfy insurance so I can resume my established treatment regimen. Decreased pain is a bonus.
Oh, and I love the pain diagram. I chose florescent colors to layer over the 4 views of the person instead of the symbols they chose for my different types of pain, or my other go-to, which is just circling the whole diagram.
I hope the therapist is nice and familiar with the reason I chose this particular facility in the first place.
adventures in trying to continue established chronic pain treatment after moving
So last year I started lidocaine infusions for my fibromyalgia/chronic pain in Boston. The biggest hurdle? The wait time (4 months) for the first available appointment for the infusion after meeting with my pain management/anesthesiology doctor.
After moving, I got the name of pain management/anesthesiology doctor who does lidocaine infusions and a prescription to see him from my new neurologist down here. So I called this doctor’s office. I wanted to double check they did in fact do lidocaine infusions and set up an appointment.
The person I talked to on the phone is not the primary (or even secondary) receptionist/office manager who knows whats going on because they didn’t know what a lidocaine infusion is. Also, you can’t just be referred by another doctor, as is the general practice I have encountered in the North East (where Dr. A says ok I want you to see Dr. B for this and then Dr. B just asked who referred you and you say Dr. A and that’s that, whether Dr. A and B know each other or not) NOO you must have a Prescription. This threw me, so I said I’m sorry, I don’t understand because I’ve never encountered this before, in Boston this wasn’t necessary. All the woman on the phone could say was well because of our specialty we don’t take walk-ins. (which is why I’m calling to make an appointment, right? ugh) Luckily, I already did without even realizing it would become so necessary. But the fact that I had the paper prescription in my possession and not a fax machine to fax it to their office - she could not handle this. We clearly could not communicate in ways that each other could understand. She eventually told me to just bring what I had to the office and they would see if it was what I needed. (This probably sounds benign, but it was incredibly frustrating).
Fortunately, when I went to the office the person at the front desk had no troubles at all, she put me and my records from Boston into their system, didn’t have an issue with my paper prescription and even scheduled me with a different doctor who is better with fibromyalgia. And when I went back for my appointment was very patient with the questions I asked about office policies they wanted me to sign.
I met the doctor. He was nice enough, seemed very open to all kinds of treatment options, asked questions about different treatments I’ve tried and everything. He told me that in order for insurance to cover a lidocaine or ketamine infusion in Florida, it needed to be paired with some other procedure. When I questioned this he said teaching hospitals can often get away with doing the infusions just as they are. The closest teaching hospitals are in Miami, over an hour away, or up in Jacksonville. (This is part of the culture shock I’m struggling to deal, because in Boston and NYC, teaching hospitals are everywhere and where I went).
So basically you need a more invasive and higher risk procedure in order to justify the one you actually want - an infusion of lidocaine or ketamine. He doesn’t like lidocaine and prefers ketamine. I told him that lidocaine is what they do in Boston, so it what’s I did. My doctor in NYC said ketamine is more common there. If I were still in NYC, its likely I would have gotten ketamine instead.
But before that, I need to get MRIs of my spine (lumbar & thoracic) because if he’s going to pair an infusion with an injection into my spine, better make sure it’s ok first. Too bad my insurance denied my authorization for MRIs. They want 6 weeks of PT first. The doctors office asked if I’ve had PT in the last 6 months. Noooooo, because I’ve been receiving treatment for more than 6 months and I thought the insurance company as part of the paperwork I sent in for “transitioning” meant I would be able to continue of all of my established medications/treatments without having to backtrack through hoops and suffer needlessly. SOOO MAD.
Today I was supposed to receive another lidocaine infusion, had I traveled back to Boston and paid $800 out of pocket. I can feel it. Just really pissed/frustrated/annoyed.
TL;DR: fuck you American health care/ insurance “system”
the hospital where I had been receiving lidocaine infusions for my chronic pain informed me that they would no longer be accepting insurance for the procedure.
During the infusion I was talking with my nurse and learned that the hospital wasn’t making enough money from the procedure so they were going to phase it out.
Because the patient needs to be monitored constantly during the infusion (ideally done in 30 min, longer if the patient can’t tolerate it, so lets call it 1 hr), the nurse needs to be there and if a patient cancels without enough notice or doesn’t show up, they can’t fill the spot. So, there are a limited number of procedures that scheduled in a day.
By making patients pay out of pocket, even if the insurance will pay for it, the hospital can charge the amount they would charge the insurance before the contracted rate, earning more money. (In my case, they would bill insurance about $800, and the negotiated rate would become more like $550). Because patients are less likely going to want to pay $800 out of pocket for the procedure, the demand will drop, so the hospital can justify eliminating the procedure all together.
I found lidocaine infusions helped my pain and had fewer side effects and risks associated with it than many other options. It’s a shame the hospital is doing this because I feel like this is a treatment that already isn’t as widely known about as it should be.
Hi; I'm interested in talking to spoonies who have gone into the medical field/are planning to. I have fibro, rheumatoid arthritis, celiac disease, migraines, type 1 diabetes and may have classical EDS and POTS. I want to be a rheumatologist but I just don't feel like I can do it, and I'd like to hear some honest opinions and experiences.
I completed my nursing education and licensure exam. Would be happy to discuss my experiences with others/ answer questions. I have Fibro, chronic migraines, etc....
Am I the only one who finds the term "rare disease survivor" kind of wrong, for lack of a better word, when referring to someone living with a chronic medical condition?
Wtf is Trump talking about? What happens when I'm also on the internet so I can fact check and see if other people are having similar thoughts about the presidential address.
I found this resource that helps facilitate more active resistance in the form calling your local government officials and representatives.
As you can see in the screenshots, once you pick you issue and choose your area, you are directed to your local representative and even given a script (that you should feel free to add to or edit as you see fit)
The link and a blurb is below
https://5calls.org/
5 Calls:
provides phone numbers and scripts so calling is quick and easy
uses your location to find your local representatives so your calls have more impact
How many of us will lose health insurance if the Affordable Care Act (Obamacare) is repealed.
I’m curious so I’m going to ask. How many of us will lose health insurance if the Affordable Care Act (Obamacare) is repealed.
I’ll start by saying I will lose my insurance. I am under my parents insurance until I’m 26 and have multiple pre-existing conditions. Without insurance and medical treatment I will be unable to leave my bed, work, or function. If any more of my organs decide to stop working properly there’s a good chance I will die.
So who else is in this terrifying boat? I want to hear your stories and thoughts.
I am currently insured by COBRA through my father's employer. I lose that coverage this year because I have been on it since turning 26 and it only lasts for so long. Without the ACA, I would not be able to get comprehensive coverage due to pre-existing conditions. As it stands, I am unemployed due to my health. Without health care too? Who knows what would become of me.
I know it’s early but this just passed the Minnesota House. It’s already begun, y'all. In case you don’t want to zoom in, some things that will no longer be required to be covered by insurance: maternity care (and **discrimination against unwed mothers**), postpartum care, prenatal care, healthcare for children, cancer treatment, diabetes, mental health, emergency services, continuty of care (aka your primary care doc)… basically all health conditions even for a healthy person could fit into this box.
THIS AFFECTS EVERYONE. YOU. YOUR FRIENDS. YOUR FAMILY. DO NOT LET THE GOVERNMENT GET AWAY WITH THIS.
This is literally going to kill people. Please share. Get mad.
This did NOT pass in Minnesota, Steve Drazkowsk, proposed that ONE insurance covers these items listed, and that others can make it optional. This is just a proposal so hopefully it won’t pass. Minnesota is usually a very liberal state, but who knows. Besides just reblogging and getting upset, CALL YOUR REPRESENTATIVES AND LET IT BE KNOWN THAT THIS IS NOT WHAT YOU WANT. See article below.
“Activism isn’t always accessible — and the Women’s March on Washington is no exception.
For people who might not have the physical ability or stamina to join Saturday’s massive public protest, disability activists created the Disability March — an online movement that allows people with disabilities and chronic illnesses to participate virtually in the event.
The Disability March organizers invite people living with disabilities to submit their names, photos and a statement on why they want to “march.” The images and text will be uploaded to the website in time for the Women’s March on Jan. 21, creating a virtual archive of people showing solidarity with the main event in Washington, D.C.
The Disability March is an all-volunteer effort, made for the disability community, by the disability community. It’s also an official co-sponsor of the Women’s March on Washington.
Huber said about 50 online “marchers” have signed up to participate in the virtual march so far, and she expects more people to submit their stories throughout the week.
Some images and testimonies of Disability March participants are already live on the movement’s website, but the bulk of photos and statements will be uploaded Friday and Saturday to coincide with the main march.”
Read the full piece here
If you want to join the Disability March, you can fill out the short online form here. The deadline for submissions is Friday, Jan. 20.
Just saw President Trump for the first time sitting behind a desk signing papers and my anxiety shot up. I could feel my heart start racing, my breath tighten, my breath catch. I want and hope for the best for America, but I am scared.
