Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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The Magic Number

August 8, 2014 at 2:26 pm (Death and Dying, Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , )

Hey there, dear readers. Before I begin, I want to apologize. When I started this blog, one of the main reasons was so I could share information about my health in a timely manner from a centralized location – so I didn’t have to post to every single social medium and then answer comments from them as well – but this time I didn’t feel ready to blog about coming to Johns Hopkins ER or why I came in. I’m still not ready to write about all of it. But here is a little information, a little navel gazing, and a little update. -Del

A while ago, back in March, I started taking on some serious edemitous weight (what we non-medical types call “water weight”, “edema”, or “swelling”) – one doctor guestimated I had gained 50-70lbs of swelling (and he was pretty close to exactly right). I began seeing a long and complicated list of specialists, each of whom happily pointed to one another as the doctor who could help me tackle this once and for all. I was bounced from cardiologist to infectious disease to primary care to nephrology and around again. I got put on several different combinations of drugs, kept on using the pneumatics when I could, tried to limit my fluid intake, etc, etc, etc.

I will admit, I was feeling pretty defeated. Not only did each doctor think it was definitely a SEP (Someone Else’s Problem), but none of them treated it like a big deal. When I had to buy new shoes 3 sizes larger, I barely got a shrug. To me, my Non-Violet Beauregard impression felt like something pretty hazardous but even when doctors was using scary words like “organ failure” and “amputation” they did it with a resignation usually used about troublesome boys.

After all, the list of symptoms I had –

  • Extreme Fatigue
  • Shortness of Breath
  • Apparent Weight Gain (Swelling)
  • Lack of Appetite/Nausea
  • Sleep Disturbance

– could all (and were) attributed to being obese/sedentary. When I showed my primary doc that I was losing my breath just from standing up and buttoning my pants, we had a ten minute conversation/debate; she was forceful with her opinion that I was decompensating. (Basically, the opposite of ‘getting in shape’.) I kept arguing that even if I was truly decompensating, I was pretty sure it wouldn’t happen that fast and that dramatically.

But all along, everything that popped up she immediately tried to relate to my weight. In fact, when I came back to her after getting the diagnosis “Volume Overload” (Totally my Del Tashlin cover band), she weighed me to confirm that I’ve had a radical weight change – 60ish pounds in 3 months.

But to me, that wasn’t the shock. It was the magic number. I think we all have one. It may not be the same statistic, but there’s a number somewhere in your life that fits the category.

  • “If I ever have to buy my pants at Lane Bryant, just shoot me.” (number implied)
  • The day my scale says 300lbs is the day I lose my shit.”
  • “When I can no longer buy clothes at the mall because I am too big/short/tall/etc, I will have to kill myself.”
  • My cousin’s bra size is a 44G. I’d rob a bank to get a reduction before I would live like that.

There I am, standing on the scale looking at the highest weight I’ve ever been. I’m not seeing the magic number, but I’m very close to it. I take a deep breath and start reminding myself that it is edematous weight, swelling, something that will go away once they figure out what is causing it. Maybe a few tears roll down the side of my face, because it’s a number I wasn’t ready for that day.

As we go back into the exam room, my doc makes a comment about possibly revisiting the weight loss surgery conversation. Anyone who has followed my story from the beginning can probably guess how that conversation went. She’s trying to assure me that just because I had ONE bad experience with ONE doctor should not mean I reject the possibility forever. I am trying to clarify to her that this weight is not “Del ate some extra cheetos and skipped aqua aerobics” weight, but “something is physically wrong with Del that is causing water retention at a ridiculous level”.

I left the appointment feeling pretty sure that my GP wasn’t going to be any further help in this situation. Once again, I’m thinking I might have to go looking for someone new – especially in light of what has happened. In the most obvious application of the metaphor, I came to her with a list of symptoms of a serious medical problem of immediate need of treatment, and what she saw was a fat, lazy person who wasn’t taking care of themselves.

I got so disheartened, I stopped giving a shit. I still took my meds and the like, but I stopped making doctor’s appointments. I lost my fire. Inside I knew that something serious was going on, but it was as if I ran around the village telling everyone the Monsters are Coming and the village reacted with affected apathy. It wasn’t until Rave and I noticed that the swelling was getting markedly worse, and now was happening faster than before, that we decided something had to be done.

Now I am inpatient at Johns Hopkins and I know for certain what all my symptoms were caused by and what the short term plans are to get me going home, at the very least. As I discussed things with Winter last night, he asked me what he and the Clan could do to support me in this time, and I paraphrase for you, dear reader, as well:

I feel like I need some time to wander in the dark, bump into the walls, wack my toe on the moulding. I need permission to let this filter in slowly, rather than jump to branding it on social media for the 140 characters times worth of edification faded into the next cute cat meme. I don’t want to have to educate each and every person I talk to about what it is, how I got it, and how we’re treating it. I just want to sit with this for a while, think about it, run my fingers around the edges and see if there’s a contingency envelope hidden somewhere.

When I’m ready, I will share everything on the blog and you will all know what’s going on. Until then, for now, it’s just mine to feel in all the ways I want to feel it.

(And the good news is, I’ve already lost 15 lbs away from the magic number, so that’s reassuring.)

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