I usually try to think of a cute or catchy title for each blog post. Something that gives you, the reader, a clue as to what the post below might contain. However, tonight there’s no cute or catchy title I can come up with. Tonight I find myself reeling and struggling with putting words together( I literally typed and re-typed this one sentence 3 times). The tears, the grief, the anger, and the disbelief are all flowing freely tonight, but the words aren’t. Fair warning: This post is as real and raw as they come. I started this blog to “heal out loud” and doing so means I have to share the things that aren’t easy to share and may not be easy for you to read. I am doing both myself and you a disservice if all I talk about are the easy parts of the journey or the healed parts of the journey.

April 1st I became eligible to receive Medicare as part of my disability being approved. I was elated. I thought with having Medicare and Medicaid all of my treatments, therapists, meds, etc would be paid for, including a provider I’ve been paying out of pocket to see for the last 2 years. Everything was great until my providers realized I fall into the QMB group or dual eligible group when it comes to health insurance. Basically, the QMB is a Medicare supplement plan that makes it so I am not charged any co pays, deductibles, or premiums by my providers. It sounds like a fabulous idea and a very helpful thing to have. It is if your providers take both Medicare and Medicaid. If they don’t it’s a complete and total shit show. I’ll save you the convoluted and insanely complicated story because it is hard to follow and will inevitably make your brain hurt. Long story short.. The government makes ill people jump through insane hoops to seek medical care and it makes no sense.

As a result of being in the QMB group, I now have to find new occupational therapists and have to say goodbye to A+ therapist who is regularly mentioned on this blog. Now you might be reading this and thinking to yourself, “O.k you have to get new medical providers. Big Whoop. Get a Grip.” But these aren’t just medical providers. These are people I have seen multiple times a week for years who have helped me to get to the functional baseline I’m at now. These are people who have advocated for me to get the care I need. These are people who have walked beside me in this journey and some days have carried me. When you have complicated chronic illnesses it’s not easy to just find new care and it’s terrifying to think what this change and lapse in care could do to my body. Will I lose some of my baseline function? Will I lose the progress I have made? Will my body go into a flare? No one knows..common theme the last 3 years.

The emotions I am feeling tonight are heightened because I am tired. I am tired of having to advocate for myself. I am tired of navigating systems that are supposed to help people and instead screw people over. I am tired of being dependent on these systems. I want nothing more than to be working full time with private health insurance, but I have a body that is not medically able or medically cleared to work. I am tired of having to always be strong. I don’t want to have a life that I have to be strong in. I want a life that I can live softly in.. all of the time. Not just moments, but a life characterized by softness. The last 3 years have been anything but soft. I feel like the hits just keep coming and I am tired of having to take the hits and get back up again. There’s a big part of me that just wants to stay down on the mat this time and rest awhile.

My story is one of millions. There are millions of people navigating these broken systems and many of them have been navigating them far longer than I have. Millions of people who are known only to the system by their case number, medical number, income levels, and diagnoses. I am privileged that until 3 years ago I didn’t have to navigate these systems. I didn’t have to fill out mounds of paperwork proving that I am in fact both disabled and completely broke. I didn’t have to sit on the phone for hours at a time trying to get questions answered by an actual human instead of a robot. I didn’t have to access these systems designed to provide healthcare that are not grounded in any kind of empathy and/or care for or towards the humans who need the systems. I am privileged to be surrounded by a village of people who are always there and who love me through that which is messy, raw, and not easy.

I am absolutely privileged and yet I am also sad, upset, angry, confused, shocked, and 100 other emotions and that’s ok. Yes, it could be worse, but it could also be a hell of a lot better.

Cuts to Medicaid and Medicare are all over the news and what these systems need aren’t cuts. What they need is a surplus of empathy. What they need is a reminder that we are all connected and what happens to one of us affects all of us. What they need is a strong foundation and ideology of care rooted in the idea that ALL people deserve access to quality healthcare and that access shouldn’t require them to jump over obstacle after obstacle.

If you feel so inclined, please call and/or email your Representative and Senator and advocate for no cuts to Medicaid or Medicare. Advocate for the millions of us who are tired of having to constantly advocate for ourselves. Advocate for the person who tonight had to send an email resigning from work due to illness and has no idea how they are going to receive the care they need. Advocate for the person who just opened up their mail and got a letter denying them access to life saving care. Advocate for the couple talking about the possibility of divorcing because of the burden of medical bills. Advocate for those who can’t use their voice. Advocate for those who have lost their lives due to systems that denied them needed care.