Posted by Michy on May 18, 2015 in Health | 6 comments

It’s a beautiful day in a suburban neighborhood.

Three people are walking down three different, but essentially identical, streets on a sunny day in the suburbs. The sun is shining. The birds are singing. The trees are blowing in the light breeze. The flowers are blooming. Somewhere in the distance, a dog barks. A child’s giggles and squeaks of playground equipment can be heard. A lawnmower is running somewhere. By all accounts, it’s a glorious, beautiful day.

Yet, each person is going to have an extremely different perspective of their walk and will have a completely different feeling while walking, because: statistically speaking, each of these three people has a different probability of being blown up by a bomb while they walk down their street.

Let’s talk about PTSD.

The first person walking down the street is happy, head held high, whistling a tune. He just got a promotion at work, has a new car, is feeling in the best health he’s been in his entire life. Even so, there’s the smallest, yet statistically probable, chance that he is going to be blown up by a bomb before he makes it to the end of the street. I’m willing to bet that he doesn’t even consider that possibility during his walk, though. Chances are, he enjoys the walk, keeps his head held high, and makes it home safe and happy and content.

The second person heard on the news earlier today that there was a bomb suspect in his neighborhood, but it was an offhanded report. There were cops there earlier, but they’ve since left. He too, is doing well at work, has a great job and a nice car and is in good health. He’s going to take a walk down his street, and his statistical probability of being blown up by a bomb might actually even be a bit higher than the first guy’s chances, or it might be the same, but during his walk, chances are he might not hold his head quite as high. He might dart his eyes around looking for something suspicious. He might be a little anxious, nervous about anything that seems out of the ordinary. But all in all, he enjoys the sunshine, listens to the birds, and makes it home happy, safe and content.

The third person is going to have the hardest time with his walk. This person, he has a bomb strapped to his back. Someone else holds the trigger on the bomb, and he doesn’t know who. He’s walking down the beautiful street in the suburbs, but even though he has a good job, new car, nice house, he’s not holding his head up high. He’s not looking around at the sunshine and listening to the birds sing. All he can think about, all he can see, is that bomb strapped to his back.It’s encroaching on his every thought, his every movement. Don’t move too fast. BOOM! Don’t jostle things too much. BAM! He has a statistically higher probability of being blown up than any of the other people walking down the street.

And it affects his reality, not in small ways. Not in little peripheral fears or worries. In real, tangible, every day ways. He can barely put one foot in front of the other for fear that bomb will explode.

And that is, ultimately, PTSD, in the day-to-day moments, every day, always hanging over your head. It’s hard. Draining. Tough.

But it gets worse…You see, for many living with PTSD, it’s not only about whether or not the bomb will go off. It’s about the fact the bomb already HAS gone off, usually multiple times before, and that the likelihood of the bomb going off again is significantly increased and makes living any normal type of life nearly impossible.

I’m living with PTSD. I didn’t even realize it was PTSD until someone else told me that’s what it was. I talked to my mom and she brought up another reason altogether that I might be living in a state of PTS as well. The part that amazes me is that I was living in it and somehow I missed it. I just never saw it. I’m a reasonably intelligent person. I’m actually quite self-aware. I’ve talked openly and honestly about dealing with chronic depression even in the midst of living a wonderful life that I love. I should have seen this, and I missed it.

When the anxiety hits you. When the fears overcome you. Wow. Boy, do they overcome you. And I just missed it.

Intelligently, I knew PTSD could be more than just soldiers and war trauma. But that is the first thought I have when I think of PTSD. I’ve known of people who have been raped or beaten can have PTSD. I know that automobile accidents can cause PTSD. Living with long-term abuse can cause PTSD.

I knew all of this.But I never considered the fact that having a medical illness could cause PTSD. Of course, for me, it’s a lot more than just having an illness–but the illness is ultimately what started it all. So, there it is. First, I almost died, twice, and have had several doctors remind me–thinking it’s a good thing–that I’m ‘lucky’ to be alive. I don’t necessarily need to be reminded of that. Because then it’s not that I remember being lucky to be alive–it’s that I remember how close to dying I actually came, and it also reminds me how close to death I could easily be again.

Secondly, it’s all the procedures—three of them—that went horribly wrong. The first time was a PICC line insertion that went back, where the line wasn’t able to be advanced, then the line broke off at one point, and after jabbing my arm approximately 12 different times with large bore needles, the nurse finally hit a nerve that sent a jolt of lightning up my arm and down the entire right side of my body. And after that, they wanted me to continue to let them dig around in my arm. The bruises were awful.

The second time resulted in an anesthesiologist screaming at me asking me if I wanted to die while I lay strapped and unable to move to a hard, cold operating table, with a heavy metal x-ray lead cover over parts of my body and my arms inside of plastic trays for quick IV access. I was fully awake and unsedated with tears streaming down my face while she screamed at me.And the third procedure that went on for over an hour ½ that left me with mottle bruises all up and down my shoulder and neck that today, even eight months after the procedure, is still not completely healed and is tender to the touch and has a knot on my neck where it happened and a visible scar. That was the right-heart catheterization, and it was also done without any sedation.

The reason no sedation is used is because my condition can be acutely triggered by the medications that are typically used for sedation, resulting in respiratory arrest, so they refuse to sedate me because of the ‘risk’. The first time, I received no medication at all. The second time, I at least was given some anti-anxiety meds. The third time, I received nothing until the stripped me naked while I lay on the table–no, seriously, I was wearing a gown and panties when I went in there, but they wanted to prep my femoral artery, so without even telling me or asking permission, they began grabbing at my clothing and stripping it off of me, leaving me lying completely naked and uncovered on the table in front of at least 8 operating room/medical techs or doctors and nurses (there were students in there too), under the harsh operating room lights. When I started sobbing uncontrollably, they gave me what they called a ‘baby dose’ of some anti-anxiety medication. It calmed my tears, but not my fears.

These are real photos of my actual bruises from that procedure:

That’s my neck, chest/shoulder area you’re seeing in the pictures. It’s very swollen at the point of the pics and bruised. It actually got worse a couple of days later. I still have a small scar on my neck and like I said, it’s still tender when pressed on, months and months later.

And they want me to go back and have another one done, but I can’t bring myself to do it. I have a major surgery ahead in my future, and without that RHC, I can’t get approved for it. I might not even be able to get into see the new doctor I want without it. How do I bring myself to intentionally put myself through that again?

Then, remembering everything that happened, I have to go back to the beginning of all this:

I almost died. Twice. I had massive multiple bi-lateral pulmonary embolisms, which usually kill people, with no warning, in a phenomenon known as ‘sudden death’. I’ve known two people who did die from this. My family knows people whose family members have died from them.

I had two rounds of massive ones, and I survived. I’ve also had multiple smaller ones, which could have killed me too, but didn’t.

The bomb on my back HAS exploded, four different major times, and multiple other smaller times. And each different time, I survived, but I suited back up and strapped that bomb back on, but a little piece of my courage was missing, a little piece of my calm was missing, a little piece of myself was missing.And every day, I walk down the street, trying to hold my head high and listen to the birds chirping and hear the wind blowing through the trees, and feel the sun on my face and make it from one end of the street to the other, be happy, feel good.

But the reality is, all I can think about is that damned bomb. There’s that bomb on my back. And it’s gone off before, and I live every day with the fear that it’s going to go off again.

And the people around me notice my anxiety, and they notice my depression, and they notice the bomb on my back and the get worried. They move further away because they know it’s going to explode any moment, and they don’t want to get hit in the remnants, shrapnel, what’s left of me. We don’t talk about my being sick or that I almost died or that I could die any moment, without any warning, or that I have so many procedures left I have to get through and I don’t know if I can even do that.

And sometimes, that makes me feel lonely. I can have people all around me, laughing, joking, smiling, and feel so very, very lonely.

And very much out of control. I have no control over anything, even when I’m awake. But I especially fear sleep.

So as long as I stay awake, I can’t die in my sleep. So I don’t sleep.

The more I don’t sleep, the worse the symptoms get. The worse the anxiety gets. The bigger the bomb gets. The closer the button on the trigger gets to getting pushed.

Until….

BOOM!And the only way to make it better inside of myself is to tell myself that it’s over, it can’t happen again. I’m safe now. Isn’t that what they work with the vets and the abused people and those who were attacked… isn’t that what they do? They tell them they are safe now, won’t happen again, you can protect yourself….

But I can’t protect myself. My illness is terminal. The likelihood I will live a normal lifespan is slim. I’ve already lived longer than the statistics said I should live. I’m living every day with this huge weight, this big bomb, hanging over my head, and it could literally go off at any moment. And since my condition has a symptom to it call ‘sudden death’, there wouldn’t be a damned thing anyone could do about it.

What triggered it all after three years of living with this illness? Well, mostly three years of living with it building up over time, but also… a good friend of mine died recently from the same illness I have. She had received the surgery I hope some day to have. She had the surgery, came home, was doing well, and then she still died.

She was my friend. She’s gone now. I miss her. RIP, Cat. I’ll always remember you and how you made me smile and laugh, even while you were hurting so.And then two more people from my forum support group died, one before having the surgery and one after it. This surgery they call the ‘cure’. It’s not a cure. Multiple people have had it and they are all getting PH again from the scar tissue. The surgery hasn’t been around long enough for them to even know, because no one has lived long enough after the surgery to know how it works 10 years down the line, 20 years. It’s too new. It’s too risky. It’s so scary.

I try to convince myself that I should just go to sleep, because if I’m going to die, it’s going to happen whether I’m awake or not. But it doesn’t work. Nothing works.

Yet you might be surprised to read me say that I do not fear dying. I’m not afraid of dying. I’m really not. I just don’t want to die. But if I were to drop dead in my sleep, I suppose that’s one of the best ways a person can go. Peacefully drift away and just don’t wake up. I’m good with that, when the time comes, when the time is right.I’m terrified of all the stuff they are going to have to do to me to keep me alive. I’m scared of the doctors. I’m scared of the procedures. I’m scared of the pain. I’m terrified that I have this pain condition that the neurologist recognizes but can’t treat, that no other doctor seems to care I have, so they poke and prod on me and don’t even realize how much it hurts that they do this in a normal sense, but add the chronic myofascial pain syndrome and fibromylgia (both of which I’ve been diagnosed with but don’t believe I actually have), and add all the meds they give me that scare the crap out of me too but it scares the crap out of me not to take them.

I’m scared of the medical treatment. I’m scared of the scars, the bruises, the pain, the suffering, the poking, the holes, the injuries, the healing, the infections from not healing, the mistakes, the fear, the fear, the fear. I’m literally petrified solid of going to an ER.

I just. Can’t. Do. It.

Even when I should.

I.
Can’t.

Can’t.

It’s not a won’t. It’s not a choice. And you’ll think it’s a choice. You won’t get it. You’ll roll your eyes at me and say that I could do it if I really wanted to, but you would be wrong. I physically am unable to force my body to move to do it. I cannot make myself do it. I can’t.

And that’s why most won’t understand PTSD. Because it should be easy just to walk through a door, shouldn’t it? It should be easy just to go to bed at night. It should be easy just to close your eyes. It feels so petty, so small compared to what others are dealing with in their lives, what others with PTSD have expeirenced, and yet, for me, it’s so real, so vivid, so very frightening.

And there’s nothing I can do about it in the moment.

The bomb can explode at any moment.

Nothing is safe.

And I don’t know how to take off the bomb without setting it off and blowing myself up.

And what’s worse is that this has turned back on old triggers in my life that I thought I’d successfully turned off. That feeling of walking on eggshells I remember so vividly from my past has come back to haunt me. Those feelings of fearing every movement, every sound, every look, second-guessing every word.

This bomb is a frightening load to carry. It’s breaking me… breaking me down.

And it is so very heavy, my friends.

And it is so very hard.

And I am so very tired.

So very, very tired.

But I am nowhere near done.

I have survived worse, and I will survive this. The truth is, I’m not really even complaining. I’m purging. This is what I do. This, this writing that I do, this is who I am; it’s how I process. Writing is good for me. It’s when I’m silent when the words won’t come, when they get stuck in my throat, behind the tears, behind the fear, when the fingertips won’t move, that’s when I worry.

That’s where I was.

This is where I am. I’m writing. And that means I’m okay, for now. And in a few minutes, we’ll see where I am, and maybe soon, I can look to tomorrow. One foot in front of the other, one minute at a time. For in each moment, there is nothing to fear. We only experience fear as an illusion of a possible future. There is no fear if we truly live in the present. I know this, but remembering and getting myself into that place isn’t as easy as the words are simple.

So thank you to everyone who has read this far. You are part of my process. I need you all. I love you all.

Love and stuff,
Michy