u/CuteAge1322

Any other dreamers out there dreaming things with characters and settings from the past but which match the plot of tomorrow? It has started happening with nightmares that are not actually nightmares, just information.

In my specific nightmare I got into a fight with a bunch of fast food clerks about a dirty grill. Then I woke up and messed up my life based on the nightmare. Then the nightmare played out as planned and I was enlightened but also a good portion of something good growing in my world was ruined by me.

How have these dreams changed you or raised your awareness of time?

How do I stop turning my life into a nightmare because I had a helpful nightmare?

Anyone else concerned that the disease itself can drive a person insane from pain and inflammation; and on top of it there is medical trauma? This is a real question. Anyone else concerned?

I’m tired of getting shunted from one specialty to another. Why can’t the rheumatologist just steer the ship? I’m already having an infection and I already have Behçet’s, which as y’all know, you know, hurts. Why go to this doctor for antibiotics for the biological from another doctor for the referral for another. We already have Behçet’s 😢

Whenever a medicine finally starts to put out the fire on a flare I am always amazed. I am totally exhausted and injured x but also amazed. Anyone on here have insights on this? Is it like being continuously “pain born?”

Also, anyone else think it’s hereditary and some families/care communities know it and take pains to make sure it doesn’t “activate” which is something generally missing in society and it makes it worse?

What about finishing up a big or long, likely unnecessary because medicine, flare with hope and you have to restart your life…again? Or is that a different post? 😂😢💯

You know, when you feel a little better and you look around and you have to just get up, tie your shoe laces and keep going, outrunning bears?

Before this last flare I was an educator. This is basically a closed chapter now. Maybe it’s the same as I would tell my students which I wrote above: you dust yourself off, tie your shoelaces, and keep running whatever it means to you no matter what your goals are; and hopefully one meets people along the way who see one’s good qualities and help them on the path.

I’m still with the Redditor who reminded me about the Behçet’s Centers in the UK. We can do more when our time isn’t wasted with this that and the other. I am deeply offended by the idea that anyone suffering for any reason is told in any way that they are here on this earth to manage ourselves and other people managing our suffering in a out of control and inefficient bureaucratic system. The goal of systems is to manage problems in favor of and for LIFE: to still live.

Is not this why we are here no matter our condition? To do more? To participate? To contribute? To live? To use what makes us unique to help the larger story of all of us unfold more beautifully?

These are not naive categories. I was an educator in oppressed communities for more than a decade trying to keep hope alive for others even as I was burning down physically.

I read a question on Reddit: “What would you tell your 18 year old self? You only have three words.” My within the burnt soup of a flare answer, y’all do not want to know. My two days into “The Predni Zone” answer is more me: Keep. Hope. Alive.

I keep getting pain born and I mostly wake up with these same three words. I wake up with less people and with less of me but I wake up and I wake up with those three words. Sometimes the third word is simply Life.

Thanks for reading.

✌️ ✌️ ✌️

(Hopefully this isn’t all an effect of The Predni Zone”—you know—but I’ll take my energy while I have it and I’ll be awake while I am awake.)

(Update: I wrote this post and hours later I fell back into the struggle 😔x)

I’m tired of getting shunted from one specialty to another. Why can’t the rheumatologist just steer the ship? I’m already having an infection and I already have Behçet’s, which as y’all know, you know, hurts. Why go to this doctor for antibiotics for the biological from another doctor for the referral for another. We already have Behçet’s 😢

Mother

I finally got the correct dose of the correct medicine and am finally back on it after a few weeks following months of fighting infection. Anyway, what a great 20 years it’s been for me since diagnosis. And now I am on the correct medicine and the correct dose and I have no will to live—that will is inverted against my own survival instincts after decades of medical gaslighting. I spend my days inside. I cry. I am shattered. Or I don’t cry and I look around and I’m like, “Where do I even start?” My first impulse in every single area of my life is, “They will not believe me.” Get a lawyer? They will not believe me. Get a therapist? They will not believe me. Get a job? Whatever they believe it will not match my situation and I will be punished for chronic illness. Get some friends? They will project their needs on to me until my illness causes dissonance and then they will cut and run. Get a partner? Totally! Guess what is so fun? Having no self esteem or awareness or respect after years and years of being treated like a subhuman and annoying piece of trash by every doctor and insurance company and then watching them do a quick switcharoo when by a miracle of pain and me forcing the issue with ER visits I get put on the highest dose of humira and all my symptoms resolve. All of them except my trust in others and my love for myself and my willingness to participate freely in society and my professional reputation and my financial health and my ability to have a family and my capacity and ability to enter into positive relationships with others. But I got the adalimumab though!

This little voice inside me of internalized socialization tells me to just accept it. I cannot—not because I cannot accept it but because I literally cannot process the emotional pain of all of this through my body. I literally cannot process it. I remember accepting my diagnosis. I remember the months and years of pain and coming to terms. What I cannot accept is how the diagnosis resulted in many of the same experiences as those with no diagnosis at all.

I am afraid to sleep. I am afraid to be awake. I tell myself I am young and then I stop myself and start to feel bad because more years is not a good thing. It’s more years of struggle. It’s more years of never fitting in. It’s more years of dipping and dodging dodgy characters who look for disabled people to eff with. It’s more years of being disliked. It’s more years of financial precariousness. It’s more years of pretending I am fine when I am not.

The amount of time I have seen pictures posted in this group with the question “anyone else?” Yes. Me. Almost all of them. All of them went away with the anti-TNF but not the memories of the years of dragging my sick self from work to doctors appointments and being told it was nothing or it was this or that and never oh it’s a manifestation of what you are already diagnosed with and you need stronger medicine. No, never that. And then eventually the being told it is psychological which took maybe ten years to solidify after diagnosis. Now I really do have a psychological issue, I literally fear other human beings, especially doctors. What am I supposed to do? Go to a doctor for it? Hell no. Absolutely not. Never.

I’ll take my adalimumab molecules and I’ll be grateful. I’ll learn to be grateful that it’s not more physical agony. But live again? Accept that 20 years of my life were snatched from me and build a castle of a new life on air and trepidation? Sounds. Fun.

I’m just venting. Please for the love of God and everything holy nobody tell me that I need to be grateful. Please spare me that.

And as a blanket answer to everything I see in this group: yes, almost every picture that is posted I have had it down to the discolouration on the big toe and feet. Don’t have any of it now thanks to a medicine I was told in 2006 I would need. Guess the first doctor was right. Oh well.

I should probably edit this for likeability. Does it make me sound courageous? Does it make me sound palpable? Is it consumable?

Anyone else no longer able to remember what they wrote five minutes ago when they start writing about their own story? Anyone else no longer able to track your own presentation of self even in writing?

The only thing that makes me feel better right now is Greek mythology, is Penelope; the idea that someone can have a 20 year chunk just bitten right out of their life story and somehow still survive.

Oh well.