Rotting from the inside out

The only place some of us can feel normal and not in pain is in our dreams. It's a sad reality but a reality for a lot of us that feel like virtual prisoners in bodies that are horribly broken and doctors who do very little to help. I recently got a second diagnosis that my bone disease had spread further. It had spread to my ankle and my Talus is in collapse. I can't put any weight on my foot. Don't forget can't put any weight on my hip because I am in stage 4 collapsed and my hip is collapsing. I feel like my body is an old house that is falling apart and the house is on fire. Different areas of the house are on fire at the same time so you really don't know which way to run to avoid the fire or what is the safest path to get you out alive.  It's hard when you feel like a prisoner in your own body. No one knows what to tell you when you tell them that you have a degenerative bone disease that is basically eating you alive from the inside out. You hear a lot of wow I'm sorry!  gee that sucks.  I mean what can people really say when you are wasting away before their eyes. You become a spectator of life. Watching from the sidelines. Everyone experiencing the things that you've only dreamed about because you can't move and every step is agony. And then there is the frustrating task of trying to get relief from the pain that haunts you and keeps you awake morning noon and night. Doctors won't hesitate to prescribe you medicine that might kill you or leave you with side effects that will cause a lovely slew of other problems. But give you something that might actually improve your quality of life? No sorry out of the question. You might become addicted even though you are in chronic pain and what you currently take doesn't even remotely touch your pain. Oh by the way have you tried ibuprofen? But don't take too much because that has its own set of side effects that will also ruin your life. It is an endless frustrating Circle that leaves you asking the question to those that are supposed to improve your quality of life then what do you expect me to do?  All you ever hear about are the people addicted to the opioids and the pain meds. And I'm not downplaying any of that however there is another side to the opioid epidemic that no one talks about. What about the chronic pain patients? The people who legitimately need pain medication to just get out of bed in the morning and be able to function and do the bare minimum. What about them? Virtual prisoners in their own body. Reliant on a system and constantly living in fear that you won't get your medication that you need to function and live your life. I will use myself as an example I literally have two collapsing joints as we speak. What I take currently is the equivalent of taking a placebo that does absolutely nothing. First I get told to take Ibuprofen then I get told don't take too much ibuprofen. So what is the solution? Why are we as chronic pain patients constantly dismissed and told our pain is not that bad. Pain is a subjective thing. Meaning you cannot see it. And for medical community who has based their entire existence on the things you can see, I think how they operate when it comes to controlling someone's pain is something they are still seriously lacking in. Because I can honestly tell you from personal  experience I can stand in front of you being an excruciating pain and I am an expert at wearing the mask of I am fine and I can stand there and pretend like I am not in pain and normal. Masking at its best from Decades of telling people I was fine. When in reality I was the opposite of fine. I didn't learn how to advocate for myself or give my opinion on my own Healthcare till later than I should have. In the early years it was do whatever you have to do to save my life. These days I want a say in what happens to my body and you can damn well bet I'm going to have an opinion about the treatment plan. When I started this journey with the new ankle addition to the bones disease, the first person that treated me said something that I hadn't heard in quite a long time in healthcare. That you treat the whole person not just one part. That is what is missing today. Treating the whole person and also not treating them like a cash cow. Until Healthcare can relearn how to spend time with patients and get to the root of the problem. Instead of ushering them in and out of a turnstile to see how many people you can see in one day to make as much money as possible. Only then can we get back to treating the person as a whole person and not as a giant dollar sign. Chronic pain patients need to be heard and we need to be treated as people and not have our pain dismissed by people who do not live in our body. Who make decisions about you based on a 15-minute visit where they see you every 6 months. We deserve to be treated as human beings who happen to have bodies that are failing us and working against us.  Not like hampsters trapped in a game of healthcare monopoly.