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I Didn’t Want to Lie

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This post has been a long time coming. I’ve written it in my head a million or so times, lying in bed in the early morning hours, but when the time came to write it down, I never managed to do it. Something else would easily distract me, and I’d forget to come back, mostly likely on purpose. I avoided it. But it was always there in the back of my mind and it taunted me as much as the stuff going on in real life, because I was needing to write about real life.

But when I first made this blog, I promised myself I wouldn’t do it if I couldn’t be completely open and honest about the experience I was having with my health. I’ve read so many blog where people try to be upbeat and you can tell it’s not real. Then other blogs where people are pleading sympathy or asking for money, whether they were truly sick or not doesn’t matter. For me, I was only going to do this if I could tell my truth, as I lived it.

And sometimes that truth got pretty dark and depressing. And when it did, it was hard to write about it, because it felt like all I was doing was complaining, like life was miserable and not worth living.

That said, I believe in physician assisted suicide. I think we treat animals better than humans when we allow an animal with no hope of anything but pain and suffering left and little to know quality of life to slip away and die, to be free from the pain. I do worry that people don’t take life as seriously as they should, and that we would see people who want to end their lives when quality of life is still salvageable.

Anyway, I’m getting a little off track, but it all ties together, I promise… stick with me, please.

You see, being diagnosed with a terminal illness wasn’t that traumatic for me. Actually being sick isn’t that traumatic to me. What is traumatic to me is all the medical procedures and treatments that prolong and/or extend my life.

The other day, I read an article on Facebook that one of my friends had shared that talked about how doctor die differently from most people. They sort of know when it’s hopeless and instead of fighting and getting miserable treatments and spending the last days of their lives in hospital rooms with tubes and hoses and codes, they slip away as peacefully as possible, with little intervention.

Now, go back in time to right after I was diagnosed with CTEPH and congestive heart failure. I was given the link to a group called the Pulmonary Hypertension Association. This is an awesome group. I love all they do for people like me and their welcome kit gave me invaluable information and links to things. One of those things was a support group forum online. And when I entered that forum, the VERY FIRST THING I saw was a thread where a woman who had severe PH and was on one of the infusion pumps for her meds had decided she no longer wanted to live like that and her doctors agreed with her, and she’d already talked to her family, and she was going to stop the infusion pump and let nature take it’s course.

Now, you have to understand that the medicine in that pump has a half-life of about 2-4 minutes or so. If the pump is stopped, she’s got about 15 minutes tops before she has to get it restarted, or she could (likely would) die.

And she had made the difficult decision to stop the pump–on purpose.

I left that forum and didn’t go back for almost a year after that. THAT was my first introduction to the reality of living with this disease I had just been diagnosed with. The thread was everyone saying goodbye to her, because she was going to die. It was beautiful in a way, but as someone who had just been diagnosed, it was fucking scary as hell. Was this what I had to look forward to in my life?

So now, fast forward a couple of years. I’ve been doing reasonably well. I’m stable finally, and much improved from when I was first diagnosed. They perform a procedure to put in an IVC filter, because I was still throwing clots, even while being treated. I was rushed into making the decision so I didn’t get to research it as much as I would have liked. I did, however, ask a lot of questions about it there at the hospital and was told how things would transpire during the procedure.

When I was taken into the operating room, there was no sedation yet, but I was told I would be sedated prior to the procedure. I was told they would give me a pain medication, a relaxing medication and an ammesia medication that would help me not really remember the procedure but let me still be awake enough to move or do things while on the table.

But when I got in there, NOTHING went like they told me it would. Nothing. First, they had me flat on my back before they let me catch my breath. Lying flat is hard for many PH patients–I’m one of them. They took my cannula off and put a mask over my face instead. Then they covered my head with the blue sterile paper. One of the techs was nice enough to make a little hole so I could see out, but they shined these bright lights right into my face. I could see nothing. I could hear little.

But then, they said they were going to start the procedure and I asked about sedation and the anesthesiologist said, “I’m not going to sedate you.. you don’t need it.”

I freaked out. At this point, they were putting heavy leaded ‘sheets’ on top of me, to block the radiation from the fluroscopy. I was literally weighted down with these sheets. Then both were strapped down to a T board and then locked into these plastic holders so I couldn’t move but they could access my arms for IVs and such if needed. Then they strapped my legs down with literal straps. I couldn’t move. The doctor then had to tape  my breasts with masking tape wrapped around my boob and gown and then attach it to the table to keep my breasts out of the way from the incision site.

They are literally strapping me down while I’m freaking out.

In the process, the anesthesiologist is YELLING at me that I have high blood pressure so she can’t sedate me. I’m trying to tell her I don’t have high blood pressure–I’ve never had high blood pressure. I guess she didn’t know that pulmonary hypertension has nothing to do with regular blood pressure. But I couldn’t think enough to even explain it to her.

I was crying through the whole procedure. She screamed at me and then left. I was still strapped down. Something inside me just shut down and I don’t know how I got through it, but I did. The moment they rolled me out of the room and I saw my Buffy, I lost it and cried for hours off and on afterward.

But that wasn’t nearly as traumatic as the second procedure at the same facility in a completely different department.

In the second procedure, not only did they not do what they said they were going to do, again, but this time, they weren’t even able to finish the procedure, AND they BLAMED me for it, because they said I wouldn’t calm down–even though I lay there completely still and unmoving. All I did was literally cry through the entire thing.

Why?

Well, before going in there, when I had gotten the IVC filter, I was told not to EVER let a doc do a groin entry procedure, because of the filter being in the way of the line. It could cause a clot to break loose or damage the filter and cause it to break loose, etc. So when they said beforehand they were doing a chest/neck entry, I was like, cool.

We get into the room and they start talking to each other, and no one is talking to me, and they say, “Oh, we’ve got to prep the groin.”

I’m telling them, “No, we can’t do groin entry…” and I explain why.

They said they understood, but that it was just standard procedure to prep the groin in case there’s an emergency and they need a quick access point.

I’m still arguing with them that I was told when I got the IVC filter… and in the middle of this, without even saying a word to me, two male techs start to take the blankets off of me on the table and reach up and start pulling down my underwear, without even saying a word to me. Then a female nurse, also without saying a word starts to clean and shave the groin area and preparing it for access. Then they walk away…. leaving me literally naked on the table, uncovered, exposed, and just lying there by myself, while everyone just buzzes around and does their job.

I realize they don’t care that I’m nake. But *I* care. I care that I was manhandled. I care that I was stripped naked without permission. I care that I was touched and manipulated without permission or consent. I consider it assault, quite frankly.

Then the doctor tried to perform the procedure. After multiple attempts to make the insertion of the catheter, he failed. He tried for nearly an hour. I cried through the whole thing and lay there naked through the whole thing. I finally asked, “When do I get to say I’ve had enough?”

He sighed, threw whatever he was holding on the metal tray (I heard it hit the tray), and said, “Whenever you want…”

I told them I was done. I was so done.

He then went outside and told my family it was all my fault that he didn’t get the measurements we needed. But I have pictures of the assault he did against me with the bruising, the multiple puncture wounds on my chest and shoulder, and it looks awful.

I have since had this same procedure done–they it took me over a year to agree to do it at another facility–and it was one of the easiest procedures I’ve ever had done. I had mild sedation, was dreamy but awake through the whole thing, no bruising, in and out in less then 40 minutes start to finish. And no groin entry or prep.

Why did they assault me? Why did they have to traumatize me?

To this day, I still tear up when I tell the story of what happened. To this day, I sometimes wake up from dreams of being on that table. to this day, I have to take anxiety medication to work up the nerve to go in for a medical procedure. To this day I freak out when I think about being strapped down and laid out naked on a table like a piece of dead meat.

And after this happened… I stopped writing in this blog like I was before.

Why?

Because I couldn’t bring myself to tell the truth…

The truth was, I was ashamed. I was embarrassed. I was scared. I was shamed and embarassed to be scared. I felt like a failure, like I wouldn’t have to be sick if I could just suck it up and do what I was supposed to and get that test. I could start the medication that would help make me better and life would be good, but I’m a big whiny ass baby.

I hated myself. I hated the doctors. I was so angry.

So every time I tried to write a blog post, that’s all that came out any more. Anger, anger, anger. Depression. Depression is nothing but anger turned inward anyway. I was emo blogging and I was started to annoy even myself.

And to make matters worse, my doctors from that point forward  kept calling me non-compliant on everything, arguing everything with me, and at one point, the pulmonologist even raised his voice and YELLED at me in an office visit. And because I was so codependent and worn down at this point, I stayed after that. I would NEVER accept that today. But they had worn me down so much, I someone thought I had no choice. Even my mother asked me why I stayed. I think it was akin to an abused spouse. You just get to the point where you feel even leaving won’t make any difference. I have said many times, I feel like if I had stayed, I’d probably be dead now. Methodist saved my life…

…and for that, I am so very grateful. I love my life. It’s fucking hard right now. I’m not even kidding you. There are days I just want to throw it up down and give up. But only for that day. Only in that moment. Sometimes, I give in to that. I’m allowed. But the next day, I pick up and try again. And if 20 days in a row I fail, then I’ll pick up 21 days in a row and try.

Some day, I might have to make a decision. But that day is not today and it won’t be any time soon.

But the reason I hadn’t written on the blog in so long was because I promised myself I would always tell the truth on this blog. My truth. I wasn’t going to lie to make it seem easier to other people who are newly diagnosed, because that’s not what I needed to read when I was newly diagnosed. However, I also didn’t want to scar or scare someone the way reading that one women’s thread in the support group scared me, and I was so angry and so far down that anything I wrote would have but truth, but it would have been ugly truth, and that’s not what I wanted someone new to CTEPH or PH to read.

So I didn’t want to lie… but I couldn’t tell the truth either. And that caused a conflict in my mind that kept me from being able to blog for a while.

I had a few lucid moments where the anger fadd for a while and I could write about something good… but this is the first time I’ve managed to write about what happened to me and not cry. This is the first time I’ve written about it and not gotten seething angry.

I can’t say I’m over it. I probably never will be completely. I have PTSD from the experience, and that causes me to relive it, dream about it, flashes, anxiety bad enough it’s crippled me. I do take klonapin before medical procedures to help with the anxiety. I take a lower dose just to get myself to doctor’s appoointments. It helps. It doesn’t fix the problem, but it’s a bandaid solution that lets me continue to get medical care where I had abandoned medical care for alost a year before getting this help.

And the big one is: I talked about it. I told my best friend the whole story finally. I told Ryan, who is a big strong fearless man and he told me just hearing me talk about being strapped down gave him goosebumps thinking about it. I told a couple of other friends who would listen. I cried to my mom and told her. I then told  my primary care doctor. She understood and listened. She also prescribed me some antidepressants and we talked about the anti-anxieties and how to use them.

I’m also going to go to counseling. I understand now more than ever what it means to write your truth… I get it. I so get it.

My hope is, now that I’ve gotten this out of me and through my fingertips, I will be able to move forward and write again. And to write without the anger, so I can be real, both with myself and with you, about what it’s like living with a chronic, terminal illness. But to do it in a way that doesn’t leave you wanting to gouge your eyes out or scream at me…LOL

Thank you all for being a part of my healing process. It means more than you know.

I’ll try to post an update about my current status tomorrow. Until then, ya’ll have an awesome day!

Love and stuff,

Michy

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One Response to “I Didn’t Want to Lie”

  1. Buffy says:

    We knew, even before you received the diagnosis, we knew in our hearts that this was a marathon, not a sprint. And you were prepared for that.

    What you were not prepared for was the brazen breach of trust by some medical professionals and the complete disregard and refusal to include you in your own medical decisions by other medical professionals. I suspect these are the medical professionals who joke with one another that medical practices would be just great if they didn’t have to deal with patients.

    And once your trust was broken, it took time that you didn’t have and really amazing professionals to even begin to build trust back again. It’s still not mended.

    I’ve watched you struggle between the need for treatment to keep your condition from worsening and the fear/disdain/weariness of dealing with appointments and unknown medical professionals for diagnostics or treatments. I’ve watched as one set of medical professionals laid all the blame for all your conditions at your feet while others found congenital, lifelong explanations for what has befallen you, things you had absolutely no control over from the time you were born. I’ve actively participated with you while you have changed lifestyle habits for the better only to see certain professionals scoff in disbelief that you could be making any positive changes and that we must, in fact, be deluding ourselves about the changes we’ve made.

    I share your anger. I wish there were something I could do to allay your fears. I’d like to stop the cascade, now. I want to put all the health dominoes standing right, again. Happy, healthy, dynamic Michy, again — make this a distant bad dream…

    It’s a marathon. “The journey of a thousand miles begins with one step.” “Just keep swimming, swimming, swimming.” Or maybe my new favorite platitude, from a very elderly relative in the Netherlands whose English is better than my Dutch, most certainly, “You have only to do one job, now: Just keep breathing!” Our goal in this marathon is to maintain the highest quality of life for the longest time… so, sometimes we scream or cry or cuss so that the rest of the time we can laugh and sing and talk honestly (and write honestly) – and sometimes… for a little while… we hide… we all do it…

    Allye Allye All come free! (ever play hide and seek? I’m really old…)

    I’m glad you came out… I’m glad you write your truth… I’m glad you were able, finally, to write about the incidents without bawling… revisit it as you need to… and let’s keep stepping – we have a ways to go…

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