Wednesday, December 14, 2011

Medical PTSD

It was my brother, an OIF Veteran, who recognized my behavior pattern as PTSD. "Pam..." he said to me very gently, "you react to things just like I do." It was if the clouds parted and suddenly everything became clear. I had PTSD from my medical experiences. I've gone into details with my counselors and one close friend who also understands PTSD first-hand, and that has helped a lot. Each of us has it from a different source, but if you change the words around, the situations are the same. The feelings are the same. The panic about doing things that could potentially help you... Being so overwhelmed by something so simple that you freeze and shut down. Wanting to run and not knowing where to run to so just vibrating in place. Yeah... it's real. It's crippling. It's a disease. Right now, I need to face having an MRI, and I'm terrified.

I'm not claustrophobic. Nothing that straightforward. It's not the medical procedure itself. I'm actually worried that the results will be negative. They're always negative. But that's not unusual for my disease. From what I've read this disease only presents on a scan about 50% of the time. I'm worried that this is going to be used against me for the purposes of denying me care. "You're just crazy. You need to come off your medication and you'll be fine." That's what the last doctors said. That was based off of test results that every other doctor has looked at and said, "No, that's an abnormal response." But they're not the doctors taking care of me for this...

I was told so long for a child that I wasn't sick. That I just needed to try harder. Then I get really sick and find out, "You should be in a coma. I don't know how you're up and walking around!" Well, this isn't far off from normal for me, doc. This isn't that bad. What do you mean I'm a death's door?

It was tested by three different labs. One was a cardiologist. One was the Navy. One was an endocrinologist. This was over a 6 month period. I was later retested in Everett and Seattle. I was retested in St. Louis. I was retested here. All of that should have meant something. But it didn't and she wan't listening to me when I told her I was getting sicker without the medication.

Now it's an MRI and I'm betting that it's going to come back clean, and these new endocrinologists are going to start singing the other doctor's tune: you're fine. You're just delusional. None of those symptoms ever happened. All of those previous doctors didn't know what they were doing. Stop bothering us, kid. You're not that sick...

Really? I landed in the ER with a blood pressure of 80/40 from vomiting and that was just what... Magic? That's not an adrenal crash? I just don't know how to vomit properly? Please enlighten me so that I may do these things the right way and not waste your time.

But I can't say any of that, now, can I? The easiest thing a doctor can say is, "No." That's the shortest complete sentence in the English language, by the way. No. No, we don't think you have this disease. No, we're not going to give you access to treatment. No, we don't have access to the antibody test that would show your disease. No, we have nothing left for you. Whatever it is you have going on? Not our problem. Go away.

And then what do I do? Do I go back to my old doctors who diagnosed me? They're in Seattle and I'm in Denver. How do I accomplish this? Can I even muster the strength to try to see this through? Do I give up on this side of it for a while and instead concentrate on the small fiber neuropathy?

Oh, and that 50% chance it may actually show on my MRI? That feels more like 0.000005% of a chance. I though the abnormal blood tests would be enough, but apparently not. So now I don't know what it will take, and that's terrifying. I thought I had a leg to stand on, but the ground gave way beneath my feet.

Well, here goes. Off to the appointment and we'll see what happens on the other side.


  1. No wonder you have PTSD. Who the heck wouldn't with that flip flopping of doctors. Geeeezzzz, they all need their heads examined. Just please keep your head screwed on tight and right until you get through this. Don't you dare let them make you doubt yourself. You know your own body and you damn well (sorry for the curse but it is needed here) know your own body better then they do. Stay strong. And to hell with the MRI if it doesn't show whatever it is suppose to show. Sometimes we need to fight for what we know is right. And if this new doc won't work with you, call the old doctor who was working with you and ask if they know of a doctor near where you currently live that they can recommend for you to see. And could they give you a referral letter with the diagnoses written in this referral letter?

  2. Oh, hell... that's not even the issue I have PTSD about!!! I'll blog about that someday. I've gotten to the point where I can tell a few people without crying now, but it was bad. My following collapse wasn't to pretty either.

    I'm waiting to hear from the doctor to know what the heck they mean and if I heard it right, but so far... it doesn't look good for our doctor-patient relationship.