Complex Regional Pain Syndrome

I would like to share my Medicare (Dis)Advantage story with you. It’s my hope to help others be forewarned. I learned the hard way.

At the age of 42, I was diagnosed with breast cancer. The breast cancer I beat, but the surgeries created a new set of problems. Within one year, I had three surgeries trying to undo what had been done. I had walked into the hospital as a fully functioning EMT and was wheeled out never to walk without assistance again. In the end, I lost everything, my career, my home, everything. I then was bedbound for two years.

I was diagnosed with two rare diseases, Complex Regional Pain Syndrome and Small Fiber Neuropathy. CRPS is also known as the Suicide Disease. It’s the most painful disease known to medicine. Though it was discovered over 200 years ago, to date it does not have a single solitary treatment approved by the FDA. United Healthcare Medicare DisAdvantage loves to use that against me and as a reason to refuse to cover the lifesaving treatments which I have to have.

There came a point where my health got so bad that I had no quality of life left. I talked to my primary about signing a DNR (Do Not Resuscitate order).

Then I gave it one more fight. I did a gofundme. I sold everything and bought my way into treatments. I was wheeled in and I walked out. I stopped living in a bed. For the past five years, I have fought to keep myself alive by paying premiums and copays on top of the full cost of my infusions, plus the medications they refuse to cover.

Then things got bad last year. My illness was progressing and I was forced to ration infusions because my rent went up $400. My neurologist started me on LDN (Low Dose Naltrexone). But the pharmaceutical company that makes the medication will not make it in the low doses that I need, because it isn’t profitable to them. For that reason, I have to use a compounding pharmacy to get the medication. Again, my Medicare (Dis)Advantage plan will not cover it.

Recently I had a denial happen via text message. The first message says “Thanks for submitting your request.” Nine minutes later, a denial text appeared. I was still on the phone with the service navigator who helped me file the request. She immediately said to me, “Oh, I thought that would happen; it’s the name of the medication.”

So a computer decided. A keyword gave me an instant denial and instructions to appeal it in writing within 30 days. Then the insurance gets between 30 and 60 days to make a decision on that appeal. These are the kinds of delays in healthcare that are killing people every day in this country, all in the name of profit.

I went to a Rights and Democracy meeting and found out there are people who would help me fight. It wasn’t an easy decision to make, going public, and sharing some of the worst moments in my life.

It took a public social media campaign with videos and over 4,000 signatures on a petition to get United Healthcare to talk to me. They didn’t like the embarrassment, considering my videos launched the same day that they bragged about eight billion dollars in profit for just the first quarter of this year. That’s only three months. They deny care while pocketing our premiums.

United Healthcare said that they would pay for my infusion after all that, but when the cameras went away, so did the approval department. I had to contact my senators, and I’m lucky to have two senators willing to fight for me.

It’s taken four months of fighting, a public campaign with videos being viewed tens of thousands of times, over 4,000 signatures on a petition, and two United States Senators, but now they say they are really going to pay for the infusion. I’ll have to get back to you on if they really do or not.

I share just a bit of what I have gone through. I have spent so many hours on the phone just arguing for the medical care that I need to survive, with people who have not even a small working knowledge of the medical care I am begging for. It shouldn’t be this way in America. We should be the very best. Please vote, act, and help to get private for-profit health insurance companies out of Medicare.

Do you know who is representing you? If you visit congress.gov/members/find-your-member you can find them, contact them, and join me in fighting for healthcare for all.

Hi, my name is bryan2023. I'm here because

#MightyTogether #Anxiety #Depression #PTSD #ADHD #ReflexSympatheticDystrophySyndrome #PolycysticKidneyDisease

Hi, my name is bryan2023. I'm here because

#MightyTogether #Anxiety #Depression #PTSD #ADHD #ReflexSympatheticDystrophySyndrome #PolycysticKidneyDisease

Hi, my name is agilerhea69357. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #CRPS #RaynaudsPhenomenon

Hi, my name is agilerhea69357. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #CRPS #RaynaudsPhenomenon

Has anyone here ever had a spinal cord stimulator trial with MAC anesthesia where they were woken up in the operating room once the leads were in place so that they could be asked questions (to provide feedback once the device is turned on)?

The purpose is to assess how the symptoms are responding to the device while still in the OR. Essentially, if I understand it correctly, the doctor has an opportunity to assess how the lead placement matches up with symptom response.

While my symptoms are bad 24/7, they are always worse at night and sitting. The procedure will be in the morning and lying face down. So, I’m having a hard time envisioning how the feedback phase will work very well in my case. (I understand the point of it in theory. I just feel like I’m going to be under pressure in a room full of people to be able to tell if a certain pulse is working or not “on the spot” in that position?)

Maybe I’m overthinking it and it’ll be a more noticeable improvement right away than I’m thinking. I’m not sure. Has anyone ever had to do this type of thing?

My CRPS is worst in my left foot (which recently got down to 60.8°F because of vasoconstriction) but at this point it’s in my feet, legs, hands, arms, and back.

I usually try to avoid going online like this to type because it hurts my hands but this trial is coming up so I’m breaking my own rules. (So, I may not be able to reply at much length).

Hi, my name is Jumpbigr. I'm here because I have been living in terrible pain since my accident and many orthopedic surgeries and then get hit with CRPS 😭
I have not met many people who have been dealing with this and every doctor has a different diagnosis.
Would love to chat if your out there.

Craig

#MightyTogether #ComplexRegionalPainSyndrome

Part 1 of 2 An activist’s dream. That’s how I would describe the trip back to Washington D.C. for the “People’s Action Organizing Revival: a call to revitalize the movement for social justice by strengthening skills of community organizing at every level, and in every organization.”

I arrived to find about a thousand people attending this conference, all of whom I was about to speak in front of. I felt like a schoolgirl with my knees knocking with stage fright. These folks represented the leadership of organizations from across the country. I lost count of how many states were represented. I’ve worked with activists my entire life but had never done anything on the scale of what I was about to experience.

I held back tears as person after person thanked me for sharing my story. These people shared the videos from the town hall, and the ones of me telling the story. People asked me questions about CRPS (Complex Regional Pain Syndrome). It was overwhelming to feel so seen, yet that was only the start of events that I didn’t even realize belonged on my bucket list.

The event had a large opening, complete with a marching band, energizing the over one thousand attendees and staff. There was incredible energy in the room, and I realized while sitting on the stage, who these people are. They are the doers, the ones who protest, write letters, or even make appointments to meet with the elected, and have their voices heard.

When it came to my turn to speak, I felt a surge of energy from the force of the applause in the room. These people are energized and able to do the legwork that I can only dream of. These are the people who signed the petition and shared the videos. The doers are in fact OUR team. Each of these people uses grassroots activism and organized the people in their states to fight the battles that everyday people face. They listened intently to me speak of our plight. How we struggle for diagnosis and treatment. The devastation is caused by private for-profit medical insurance companies, denying more than they approve, especially for those with rare illnesses like CRPS or Small Fiber Neuropathy.

The roar of the crowd was overwhelming, and I took a moment to just breathe. In this journey, I have seen that it is really important to be present and take in moments like this.

The next day was all about learning and connecting. People broke into different sessions focusing on various tools. Some concentrate on techniques, like how to deep canvas and have discussions on hard conversations. Politics in the last few years has become more volatile, making it even more intimidating to speak to the elected about the forever sick. For my part, we focused on having conversations with people who don’t agree with you. I didn’t realize how much of that skill comes from the lives we live as warriors with CRPS.

We have all experienced it, dealing with people who have no idea we exist, or the blocks we face in accessing healthcare. I’ve found myself defending my treatments to the well-meaning pseudo-expert trying to tell me how to “cure” CRPS. The more we speak up and become real to the world, the more possibilities there are. That unfortunately means lobbying the elected in order to protect our community and fight for access to life-changing treatments, typically blocked by nothing more than a lack of money. My goal at this moment is to get Congress to hold hearings on how these companies, especially with Medicare Advantage plans, leave patients without treatments, without comfort measures, and without dignity. We need to change the system these companies operate in and use against people with CRPS to deny treatment. This convention was teaching the tools to do just that.

The final day was organized chaos in the very best of ways. First, we loaded 20 buses, with bus drivers who had no idea where they were going to drive to. All they knew was that over 900 of my closest friends were going to flash mob protests in specific locations around the DC area. When we acted on healthcare, we protested outside of the offices of the very lobbyists who diminish our medical care. They lobby for less responsibility for health insurance companies, giving their corporate stockholders billions in profit. We wanted to put them on notice. We are no longer going to stand by while people suffer and die without care readily available at most hospitals, but inaccessible because they can’t afford to buy in.

I’ve been able to share our stories of losing our homes and struggling to afford care and food. So many of us have become medically poor in large part due to so-called “medical” insurance companies, which would rather we die off than pay for us. We are so very “expensive” to keep alive.

Being on the streets of Washington DC surrounded by people chanting and

Part 2 of 2 demanding medical care for all. For an end to massive denials while we suffer unable to navigate the appeals process. It’s a chance to turn the tables and force elected officials to see us. We have to push for hearings to address private health insurance greed. These people made sure we were seen.

The next part was a whirlwind of epic efforts. We lobbied in private meetings with the Senate finance committee staff for hearings on denials. We told them that we needed them to investigate. We told them about computers using keywords to issue denials. We moved on to Senator Markey (D-MA), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Subcommittee on Primary Health and Retirement Security. Sharing the same things with him, hoping he will investigate how these companies seem to default on Denial of Care. Far too often we have to battle these companies in order to stay alive. We met with a staff member whose job it is to work on these very issues for the entire HELP committee.

If we can get them to hold hearings, we can be heard on a large stage. We can show people the reality of our lives, and our constant battles with insurance companies to access the medical care we need.

Often I have received, in writing and on the phone, an apology from the insurance representatives. They say, “We are sorry for your inconvenience.” That’s how out of touch and ignorant they are of the medical treatments that they have the power to say yes or no to. More than once I have told them to stop saying that. This is not “an inconvenience,” I tell them. This is my LIFE!

If it wasn’t for the buses, Lyfts, and people willing to rent a wheelchair to push me around, I couldn’t have done any of this. It was a good exercise on finding my limits. I’ll admit, this one got to me, and when I got home it turned into a two-week recovery. It was so very worth it. Nothing will change if we cannot be seen by the decision-makers.

Next up, I will go back to DC to meet with some New York City retired first responders and teachers who are having to fight to keep their traditional Medicare. Some are 9/11 first responders who have rare illnesses and sicknesses caused by that horrific day. I have little doubt that there are CRPS patients.

They should be home enjoying their well-earned retirements, yet here they are. We will be meeting up in a church where they will get some key points to help them lobby their senators and representatives. Their mission is to preserve and protect the traditional Medicare plans they have. The city mayor and others are attempting to force them off of those medical plans and onto, you guessed it, private for-profit medicare advantage plans. Many would lose their providers and hospitals, being forced to move to “in-network” providers. Trying to use the backs of the sick and most vulnerable to make cuts on medical costs. We with CRPS know this too well. I’ll be sharing my story and helping them to have more ammunition for their fights.

There will be a press conference where I will have a chance to again share our existence with the world. I will also lobby more senators and representatives. Do you know who is representing you? If you visit congress.gov/members/find-your-member you can find out, and even send them an e-mail message. Every time you contact them, they see a voter and it puts our issues back in front of them. The more of us that ask for these hearings and share our stories of denials and roadblocks to care. There are grassroots organizations in many states that would love nothing more than to help you have your voice heard.

Everyone deserves access to the best American medicine can provide.