HAWMC Day 20: Getting out of the Pit of Despair

Posted: April 22, 2013 in about me, Basic Info, Coping
Tags: , ,

I find it quite humorous that the prompts I recommended for this blog challenge the hardest ones for me to write!!

About 80% of the time, I live in the Pit. It’s become a comfortable nest, of sorts. Sometimes, I don’t really want to get out of The Pit. Living life as it supposed to be lived is not possible for me, and no, that NOT a choice. It’s a “prison” sentence, and that prison is my life.

I nap. Or I try to nap. During the day, I possess the ability I lack at night – to clear my brain, quiet the frustrations, and relax into a state of semi-consciousness. Perhaps, this is added by the fact my BP runs incredibly low most days. The beta-blocker I take to calm the chest pain and dypsnea also drops my heart rate to bradycardia levels, and lowers the diastolic of my BP. For some reason, this doesn’t happen at night. It’s as if my brain rages against me and will do anything to keep me from relaxing at night.

I watch a good TV Show – one that gets me absorbed into the story. NCIS, Monday Mornings, Smash, or even a good Top Gear episode.

Anything that makes me laugh makes The Pit much more tolerable. Most of the BadLipReading videos, especially the Michael Buble, “Russian Unicorn” video, or any of the 2012 political ads/debates can almost make me pee my pants.

I play some mindless games on my iPhone as well. Angry Birds, Majohg, Where’s My Perry – anything that engages my brain enough

Unlike a lot of others that have chronic illnesses, I don’t find hope, solace or joy in platitudes, unicorns or fluffy kittens. 30+ years of counseling just taught me how to live in denial – that the “me” that existed just wasn’t good enough, pretty enough, healthy enough or “right” for this world – therapy (and I saw many different therapists due to my frequent moves to different states) just taught me how to pretend to be someone I wasn’t in spite of my experiences and health issues – and has left me even living in an even deeper and MORE convoluted Pit of Despair than years ago. Now, on my own, with the help of the SuperBetter app I referenced in an earlier blog, I’m learning to just be me and stop wearing so many masks and facades, and stop trying to behave as someone i’ve never been.

Until doctors decide that I’m worth their diagnostic efforts so my life will cease being useless (my bad for not fitting into their little diagnostic boxes), i’ll be residing here in my Pit of Despair.

20130422-201631.jpg Drawing by Kurt Schneider

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Comments
  1. crshore says:

    This is precisely how I feel most of the time. Thank you SO much for your honesty and candid assessment!

  2. Jackie says:

    Wonderfully insightful post! I’m just wondering, have you ever tried Midodrine to raise your blood pressure? It’s helped me a bunch and I couldn’t take a beta blocker without it! For awhile I was concerned about taking it because I heard it was being considered to be taken off the market. It turns out this has nothing to do with complaints or issues with the drug raising safety concerns — the company just didn’t complete their clinical trials in the time frame they were given.

    • Lori says:

      Thanks for your comments!!
      Midodrine and Florinef are EVIL to me! My BP is very labile – at night it can shoot up so high I cannot even sit down. With a huge family history of strokes, it’s very frightening. Both the Midodrine and Florinef have a cumulative effect I me -raising my BP to astronomical levels – and staying there. Many ANS patients cannot tolerate either drug – there are others out there that do different things, but my “experts” here in Boston are so one/track minded, they wouldn’t try anything else for me. My BB is my lifesaver now – I seem to have much better luck with the cardiology viewpoint on treating this issue vs the neurology outlook. The neuro’s took NO concern for my symptoms when my BP would go up so high I couldn’t even focus my eyes -and the head pain was worse than a migraine!!! My cardio was quite concerned and said to treat the high BP immediately to avoid organ damage. Too late – I’ve suddenly got pre-diabetes (and I eat healthy and I’m thin) and renal issues – both can be caused by BPs being too high. But then again, I’m such a medical mystery, God only knows what is going on with me. I may be headed towards PAF or some other incarnation of ANS.

      • Jackie says:

        I’m sorry to hear you have such a touchy BP. I know how sleepy low BP can make you. I know I am very lucky to be an ANS patient who can take Midodrine (Florinef is no good with my body). I eat a lot of salt but it really does not seem to ever raise my BP like it should! I’m saddened (but unfortunately not surprised) to hear about your experience with neurologists. My neurologists are definitely more focused on how dysautonomia effects my brain than my cardiologists are, but they know all about the importance of helping me learn to control my HR and BP. I’m happy you’ve found some cardiologists with a more open mind! Even with great doctors, I don’t think staying up to date on dysautonomia research is a major priority. I have days where I spend my little bit of energy sifting through journals online (get the good ones through my library website) looking for empirical studies on people like me! Never know when something will pop up. And here’s a hug ((hug)) for all you’re going through.

      • Lori says:

        Do you mind sharing the names of your docs??? I had a VERY bad day today – my PCP is holding back on getting me away from the docs at BI that are rude and inconsiderate. They say things like, …”it’s not that we don’t believe you, BUT, your symptoms don’t fit what we usually see.” Bullshit! ! Read blogs about people with symptoms almost identical to mine and I read journal articles that could have been written about me. I’m so frustrated…I literally don’t know what to do….

      • Jackie says:

        My favorite doctor is a neurologist who specializes in POTS. He is at Mayo Clinic in Rochester, Minnesota and his name is Dr. Fealey. I got to him through the POTS Clinic which I was referred to by a cardiologist who wasn’t sure what to do to help me.
        Prior to my POTS diagnosis, I just went to doctor after doctor after doctor and stuck with the ones who believed something was wrong with me, even if they didn’t know what. For example, my allergist/immunologist would always brainstorm ideas of what could be wrong. She did bring up anxiety/depression a few times, but she also strongly believed something was wrong. When I said it wasn’t anxiety, she didn’t push it and continued trying to think of tests she could run. Eventually, after over a year (I visited her mostly for sinus issues and we would talk about my illness then), she noticed my heart rate and referred me to a cardiologist. This is how I eventually found out I have POTS!
        If a doctor is rude, don’t go to them. When I don’t like a doctor I am referred to, I go back to the referring doctor and say that doctor will not work for me and lay out the reasons. I’ve never had the doctor not agree to refer me to a different doctor. I also research doctors before going to them — read reviews and such. I’m sorry this is so scrambled. It’s late so my meds have worn off and my brain is foggy!
        Is there a research hospital that would take you? Going to Mayo Clinic was awesome. A bunch of different specialists looked at all my testing and told me what they thought then this nurse practitioner helped me put it all together.

      • Lori says:

        The Mayo – or Vandy – is what I want. My stupid ins is the problem. Living in Boston is another problem b/c all the docs here think they are so perfect.
        They aren’t.
        Most are closed-minded asses with bad attitudes. Beleive me, I hve eem my share of jerk and I am NOT very quiet about it either. People shouldn’t pay to be treated like less than street trash when they need medical help!

        I will add you input to the medical info page I am creating.

        THanks sooooo much for your input!!!

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