I’m not okay

My favorite doctor (beyond the one who is my friend and isn’t MY doctor) once told me I’m one of his favorite patients because despite feeling like a walking pile of explosive crap, I’m kind and have a great attitude.  Clearly, he doesn’t read my blog.  He was actually speaking to my Mom, who was at the appointment with me and not directly TO me, but it still made me blush.  It’s also possible he was sucking up to my Mom but let’s just pretend he wasn’t.

This person he’s talking about isn’t me.  He, as well as all of my other doctors, know the version of me that will smile, laugh, and joke around even when I have a dozen catheters and tubes poking out of my body or am going through a painful procedure.  The one who seems to be unphased by all that is happening to her.

The truth is this: I hide behind humor and sarcasm.  I’m not happy.  I’m not coping.  I’m miserable.  I don’t allow these feelings to show because it makes others uncomfortable.  I can’t do that.  Sure, if you read this blog, you likely have a closer approximation of who I really am than all but the closest of my friends do, but that doesn’t mean I don’t use the same front here occasionally in order to make what I write easier to digest.  If I don’t think I can pull it off, then I’m inclined not to write at all.  How do I make a joke about a staph infection and going into respiratory failure or needing an organ transplant?

For example, a recent password protected post.  I don’t suppose talk of suicide is easy for most to digest, so I left it as it is and haven’t shared it with a single person.  It’s a battle between my will to live, which appears to be much stronger than I was aware of, and my need for relief.  It’s difficult to not go to that place while dealing with what I have been over the past several months and years.  Or maybe this would be easier for someone else.  I have no idea.

This isn’t strength.  I think anyone would do the same thing in my position, weak or not.  When you’re faced with a choice of THIS or DEATH, I think you’ll find a reason to put up with a hellish amount of bullshit if it means you’ll wake up tomorrow.  Whether it’s because you love life, love the idea of not dying, or because you love the people in your life, there’s a reason for you to stick around.

Every day it gets more difficult to find a reason.  I wake up every morning for labs and wonder if today is the day I take my life into my own hands and drag myself out the door.  Am I making the right decisions?  What’s going to happen when I lose health insurance next year if I’m required to take several different immunosuppressants to keep my body from attacking my new parts?  I won’t be able to afford the drugs.  I won’t be able to afford follow-up care, let alone seeing the minimum of four specialists to surveil and treat my various conditions.  Is a one-year extension of my life worth it knowing what I have to look forward to when I get home?  Will I be able to travel, or will I be sick as fuck until I die?  It’s the uncertainty that gets to me.

Not being able to predict the future and feeling completely out of control.  If I knew for a fact that all of the pain I’m going through now is worth it, in the long run, I wouldn’t give it a second thought.  The realistic part of me knows that I may live longer if all goes well, but I’ll still be sick.

I’m not okay.  To say otherwise is a lie.




16 thoughts on “I’m not okay

  1. I think any of your regular readers are able to be compassionate when it comes to what you’ve had to deal with and how much you’ve had to struggle. Hell, I can’t even imagine having to go through what you have to and there are days that still I contemplate not having to wake up again in pain or anguish. Is it difficult subject matter? Yes, but it’s reality. You shouldn’t have to fake OK or mask your real shit constantly just for everyone else’s sake, especially in a place where you’re supposed to be able to come to vent and lay it all down. I know I was happy to see when you posted after awhile silent. It’s selfish, but I’m one of those who definitely will admit that I benefit from having you around ๐Ÿ™‚

    Liked by 1 person

    • I think it’s that connection I have with wonderful people like you that makes me want to save them from my funk. I’m usually a glass is quarter full (of vodka) person, but when I’m not….yuck. I can hear the violins playing. ๐Ÿ˜‰

      Liked by 1 person

  2. Regardless of how you feel inside
    I can still hear the fight in you
    I know how you feel
    I’ve been feeling the same way
    Since my accident
    Last April
    All I do is either go to my appointment
    Or fight with the Dr when I get there
    I will be starting this major medicine soon
    It’s going to push my buttons even more
    All i am trying to say
    Is I understand
    I know that at least helps
    Big hugs to you
    As Sheldon Always

    Liked by 2 people

  3. I can close my eyes and remember laying in the hospital knowing if I let go, I’d die. And having lost people to suicide, and (let’s be perfectly honest…..chronic illness body to another, spoonie to spoonie) thought about releasing myself from my own pain; I understand both sides of it very intimately. All I can think is that I would just hug you until you felt wheat I couldn’t say.
    Sometimes that’s enough. Sometimes it isn’t. When I lost Brenda a year ago, it was in large part because she let go. She couldn’t do it anymore, so I smile at the sky and know she’s not hurting anymore. I talk to her a lot. We all die. It’s one of the things that is true for everyone, all the time. What you do with your time is up to you. And when your clock stops ticking, there won’t be anything you can do about it.
    BUT, while you’re here, know you are loved, you are cared about, and you matter. (snicker….you have mass, you have matter…..okay. That’s as much seriousness as I can do at once!)

    Liked by 2 people

  4. I do sarcasm, as you know. I believe its a form of resilience and strength. It keeps us going when nothing else does. I don’t believe it’s a mask; just another form of getting you through the day … the event. A process. And one you are bloody brilliant at!
    But I get it … some days … OMF.
    And how on earth do you manage all that you do???? I have no idea …
    I love your blog; everything you write … for selfish reasons i guess … It reminds me that shit aint so bad on my side of the fence … that a headache, a tummy ache, the shits, whatever … it aint so bad when theres someone like you, still struggling to make joke; still struggling to cope … with tubes and all kinds of shit dangling from you … I call that strength! And I admire the fuck out of it!
    Coping? Fuck .. how you do that is up to you! Suicide? Fuck … its been done for less! It’s your life … whether you feel in control or not … its yours … and no-one can tell you what to so with it … if its the route you choose, I’ll be sad .. but I’d get it.
    If I could swish away everything for you, I would … and so would those that read your blog, I think.
    The thing we have in common … is we loves Us some Kara xoxox

    Liked by 1 person

  5. When my Mum was told she had 6 months, she said she was ok, and ready to go. She was not going to have chemo. That was that. No one believed her, but it was true. Even the priest said to us he’d never met anyone more ready. I believe you do know when you’re ready to go – ready not to fight anymore. But I believe the fighting is key. My Mum had not been in a long fight. She’d been in no fight at all. When she had cancer the first time age 40 (I was 7) she had a reason to fight – 2 kids who needed her etc. But at 69, nope. She didn’t want the change that would happen with the meds. She didn’t want to feel sick, be stuck with needles and all that crap. When she did have to have certain things done, she asked me how I’d put up with those procedures, and I shrugged. I can’t imagine not fighting – but I know that there will come a stage when I go ‘that’s it’. If I can end it myself, all’s the better. I hope you don’t yet, because I enjoy reading you too much, but I understand the ‘will this be worth it’ element and the wish to have some control. Good Luck. xx

    Liked by 1 person

  6. You are very brave to talk about this.
    I can’t say that I don’t understand, I do. I’m not as sick as you and I’ve considered it. But I do love life, most of the time, and I love my husband, I know it would ruin him if I did that.
    I too hide behind humor and doctors think I’m great.
    I’ve decided to start showing more of my misery to the doctors.. I may always be sick, but I won’t go down without a damn good fight.
    I know you are a fighter, I also know you’ve been through hell.
    Get help if you can. I saw a therapist to handle my disabilty.
    I don’t like that you are going to lose your health insurance. That scares me.
    I too didn’t like the content of the post. I liked that you were open, brave, and honest.
    I care.

    Liked by 1 person

  7. Powerful stuff you are discussing, Kara. Like many here, we are liking because of your honesty, and bravery. I couldn’t begin to know what you are going through, but I can express my hope that you can get the help you need to carry on, and that you sound like you will keep fighting.

    Still hoping for the best for Kara-land in Maryland, T. Wayne

    Liked by 1 person

  8. I think suicide has crossed more people’s minds with chronic illness than what is actually talked about. I stay for my dogs and creating, being outside enjoying the fresh air, bird-song and flowers, the sun on my face, for people I can relate with and make this world a friendlier place. I hope your health insurance doesn’t become a problem. Thinking of you – as well as all these other people and the people who care about you in your offline-life.

    Liked by 1 person

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