I’m sorry I missed posting the ending to the blog about the PTSD trigger. I actually passed out and fell on the floor, hit my head on a chair (it was cushioned!) and twisted my back, broke my big toe–again–twisted my ankle, and got a bruise on my hip and both my knees. It was hard to get up off the floor while shaky, I’m weak anyway, and then with the pain from the fall. But I managed. Was stiff this morning, but I actually hurt more tonight than I did when I woke. Still pretty achy. But I’m tough and I’ll survive–in fact, the cardiologist told Lynn after the wide-awake procedure that I was tough. Yay, me!

I have to go to the cardiologist tomorrow, so I’ll be sure to let them know what happened. It also means I need to finish this blog post up and get to bed. Yeah, we’ll see how that goes.

So where I left off, I was doing pretty good in the hospital. Been there over a week. More than ready to go home but happy with the progress we were making. I was expecting I was waiting for an open cardiac MRI, and along with the infection in my arm, we figured I was going to be there for a couple of more days, at least.

I was okay with that, BECAUSE of the progress we were making and because I was feeling quite lousy still and figured there was something more wrong with me. I actually felt worse they day they discharged me than I did the day I checked in! Hotel Hell, I’m telling ya.

But about the PTSD…. okay, it’s not like me at all (sarc) to get off subject like this. (/sarc)

I was doing really good with the PTSD from the horrible procedures and problems I had at UTMB while I was spending this visit at Methodist. Every good procedure at Methodist, every good nurse, every good doctor brought  me closer to feeling better about things and less fearful. I mean, come on, everyone is going to be a little nervous before a procedure of any kind. It’s human nature, but most people aren’t as frozen terrified with flashbacks and such like I was.

And then the doctor I loved, the dynamic, beautiful, statuesque doctor in the flashy clothes and high heels and gorgeous jewelry, with a wit and intelligence that was obvious to her, this woman I respected and even LIKED… she triggered my PTSD without even realizing it.

To understand what happened, you might need to understand what happened during the IVC filter placement at UTMB, when the anesthesiologist stood over me, while I was strapped down on an operating table, with no sedation, frightened and upset because nothing was happening the way I was TOLD it would happen… and she screamed at me, “Do you want to die? Because that’s what’s going to happen. You’re going to die….”

Now… there was absolutely no reason for her to behave this way. And in fact, the thing this anesthesiologist THOUGHT was wrong with me was not something I was dealing with–which might be why she disappeared through the procedure and left her student to monitor me.

But I don’t want to talk about her. If you want to know more about that procedure and nightmare, <a href=”http://dyingtolive.michelleldevon.com/i-didnt-want-to-lie/”>you can see here and read about how it affected me. And this wasn’t the worst one. Just the first one.

So when this doctor I liked came in to talk to me, I know she meant well and she meant to impress upon me how urgent my health is. I was hesitant about the cardiac MRI. She could see it. I was considering refusing it and having them figure out another way. She was worried about the fluid–seriously, over 150 pounds of fluid, 90 or so of which came on in a little over a month (yes, this is documented by the health professionals, and no, it wans’t a broken scale–if you’d seen me, you’d have noticed it, believe me, it was noticeable.)

So she said to me something I’m sure she meant to drive home, to show the urgency of the need for the testing and for me to lose this fluid weight and to get more active and get my body moving and functioning more normally again…. she said, “If we don’t get a handle on this, I mean, you’re going to die. I’m just being honest, here. You’re going to die.”

And she said it firmly. Not angrily. She didn’t yell it, but she was definitely intense about it. I know, I know, I know her intent was to be helpful.

But that’s not how you motivate me.

And instantly, I was whisked away to lying on a flat operating table, strapped down, my arms out in a T, crying, with someone screaming in my face.

And I realized that no matter how far you come, PTSD can ALWAYS drag you right back. And it doesn’t have to be a big thing that triggers you. Sometimes it’s just a word or a phrase or a flash of a memory.

But after that, I really wasn’t engaged in talking with her. I really didn’t hear anything else she said. I was no longer this active, involved patient, but was like a child, afraid and waiting for my punishment. I HATE feeling like that. I hate feeling out of control.

I needed to tell her that was not how to motivate me. Fear and urgency only increase my anxiety. Fear or death or dying only shuts me down and immobilizes me. What I need is to be told that there’s hope. I need to be told that I CAN improve if I try. I need to be told exactly what I need to do and what to expect as results if I do it.

• Tell me it will be hard? I can do hard.
• Tell me I have to be tough? I can be tough.
• Tell me I might have some obstacles to get through? I’ll work through them.

But give me hope that there’s the ability to get better, to feel better, to HAVE a life again and to have quality of life too. THAT will motivate me.

Yelling at me and trying to scare me won’t. And I can’t even fight back like I used to.

All that said, I’m over feeling sorry for myself for not sticking up for myself with her when she bashed my diet and basically accused me of being a lazy bum, without saying the words. I kicked myself for a bit for not standing up for myself. I cried in the hospital room after she left. But I picked myself back up. It took a few days for me to even tell Lynn that she triggered me, though I think Lynn already knew. I told RT… but when it comes to the medical stuff, he doesn’t know what to do with me. Maybe that’s why I told him. I wasn’t ready to deal with it really yet and was fooling myself into thinking I was dealing with it. But I’m past all that. Now, I’m ready to stand up for myself.

More than that, I’m going to find a way to do the cardiac MRI. Then I’ll start the new and super expensive drug, Tyvaso (click here to read more about it–I got a $12,500 grant from Caring Voice Coalition to pay for my part of it just until December! I have to reapply for next year!) And I’ll start my physical therapy again. I’ll start the lymphedema therapy full force. I’ve already lost nearly 60 pounds of fluid weight since the day I checked into the hospital and I’ll keep going like that until it’s all gone, stretch marks on my ankles and all!

And while I won’t be able to CURE myself of CTEPH or pulmonary hypertension or congestive heart failure that comes with it… I WILL increase the length of my life with this life-threatening, terminal condition, and I will be greatly improving my quality of life.

And I can do this!

(I honestly don’t know if I can do this or not, but I have to believe I can so I can even try–so there you go. I can!)

And along the way, I will be posting here. Because I need to be accountable. I have a 2, 2, 2 diet now.

• Less than 2 liters of total fluid per day intake and always make sure my output is greater than my intake.
• Fewer than 2000 calories per day, with at least 50% of that being lean protein.
• And fewer than 2000 miligrams of sodium total per day.

And if I screw up one day, I’m going to scrap it and start over, and keep it going the next. And we’ll do this one day at a time. I don’t want another 9 or 11 days in the hospital leaving me looking like a truck ran over me. Still, over a week out from the hospital and I still have about five or six deep purple bruises all over my arms from all the failed IVs and blood sticks.

Ugh, and I have to go get stuck again tomorrow.

So to kick it off, I’m going to get off here, and get into bed and get some rest so I can be at my current best for the cardiologist appointment tomorrow afternoon.

Please send me all sorts of strong energy and happy thoughts tomorrow afternoon around 1-ish central time…. the good news is, Lynn said she’s take me out to an early dinner so we can miss rush hour traffic… and I get to pick anywhere I want to go in that area. I have an idea if they’re open and I’ll share it with you guys once I get there and can take pics.

I need to say one thing briefly before I sign off:

You guys and gals who comment on this blog either here or on Facebook or those of you friends who send personal emails, I need you all to know that every day, as much as my family but in a different way, you keep me going. I look forward to seeing what you type to me. I treasure your words. When I get bad news, I will grab my phone and stare at the notifications to see if anyone has said anything. And sometimes, when I’m stuck, your words get me flowing again, make me feel my anger or a my fear or my sadness, and once I feel it, I can put words to it, and once I put words to it, I can heal it.

And that’s why it’s so important I keep writing in this blog. I stopped doing that after the trauma at UTMB, and it made me suffer… it hurt… it damaged me or let me stay damaged. I have to write. I HAVE to write. I AM a writer. It’s what I do and it’s who I am.

And I love and need each and every one of you.

Love and stuff,

Michy