Regis said: Aw, sweetie, that's heartbreaking. I don't know what to say.

Jason_K416 said: Thank you so much for sharing this. 15 years I've had chronic issues and I never knew September was devoted to chronic pain.

What makes me the most sad about this vlog is that 90% of what you said I understand and relate to. I have chronic pain through Crohn's Disease, and ankylosing spondylitis RA since 2001. Other minor accompanying issues like Testicular cancer, plaque psoriasis, and Reynauds. I know I am no where near the levels that you are at because of your comment on dilaudid. 1.5 of that will not only make all my physical pain go away, but it instills a feeling of apathy. The doctor could come in and say they want to amputate my leg and I would be completely fine with it.

The worst are the people that I see regularly that still don't get it, the ones that constantly say "are you ok"? My mother in law says this to me all the time. She's said this to me after I've come out of surgery...What the hell do you think, of course I'm not ok, and no, there is nothing you can do about it. Stop asking.

I know that burning sensation, except I get it in my core. Instead of it being from a physical activity like sitting, or moving, its from eating. Everytime I sit down for a meal I have a feeling of dread. How many minutes will this take before I feel like I've actually eaten battery acid. Everytime I feed myself, even drink water its like giving myself food poisoning, and the fight to hold it down ensues, sometimes for hours.

I don't sleep either, but while you wake up in agony all the time, its only about 50% of the time that pain wakes me, usually its the need for the bathroom. Some days I'll wake up and feel like I have '7 spoons' today, and others I'll have '2 spoons' of energy or things I can do. I'm on high doses of steroids so I also get those days were I THINK I have 7 spoons and I do all the things...only to find about 2 hours later I'm being peeled off the floor for overexertion and pain.

So many times I have to tell friends and family, no I can't come with you to this even or go see this person because I don't know if I'll be able to make the trip, or I don't want to collapse on the ground from a flare and have someone call 911.

Leila, I'm so sad you deal with this. I can relate with your story, with your every day life, but I can never understand it. I don't have the same injury, the same pain, the same neuropathy.

I won't pretend that I have answers either as we each have different journeys and different things work for each of us depending on the health issues the individual has. I truly hope you find something that works for you, and I'm more than willing to talk to you or even just listen to you any time.

Wishing you peace, relief, grace, and love,
Jason