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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Meritus Hospital in Hagerstown, MD: The Worst ER I Have Ever Visited

October 19, 2013 at 4:27 pm (Uncategorized) (, , , , , , , , )

I try, when I can, to make the hour drive to Johns Hopkins Hospital when I think I’m having a medical emergency. However, on October 12th, I thought I might be having a heart event of some sort, and realized that I needed to get to the closest ER possible. This meant driving 10 minutes to the Meritus Hospital ER, which turned out to be the worst choice I have made, medically, since having surgery with Dr. WLS.

Over the week prior, I had reoccurring headaches, and increasing pain/weakness in my right arm. On my birthday, October 11th, the pain had become severe, and had spread to the right side of my torso, including over my sternum area. I really didn’t want to go to the hospital on my birthday, and I kept telling myself that it was the “wrong arm” (as, stereotypically, heart events cause pain in the left arm). However, by 3am I was having a hard time taking deep breaths, and the pain in my chest was pretty significant. I woke Rave up and told her I thought I should get checked out, even if it’s just to rule out a heart event. 

I had other reasons to worry: I’ve had a bunch of irregular tests lately when it comes to my blood, my blood pressure, and my doctor was suggesting a statin because my HDL was a little (but only a little) high. My blood sugars have been high regularly, and it had been hard to regulate it because I kept having to go off my Metformin due to CT scans and other tests. (Metformin raises your body’s sensitivity to insulin, which helps a diabetic use less insulin – or none at all – to regular their blood sugar numbers.) And the pain I was feeling was pretty damn severe, especially in my right arm. In fact, the reason it’s taken me this long to write about this is because my right arm is still in severe pain –  7 out of 10 pain on a good day – and my hand and fingers have had some weakness as well, which has made it hard to type at all.

So Rave woke up and we drove down to the Meritus Hospital. I’d been there once before, for what turned out to be a superficial blood clot. I wasn’t very impressed then, but it wasn’t awful.

When we arrived, I was pleased to see that there weren’t many other people in the waiting room. One of my biggest reasons for being hesitant about going to the ER is the fact that often, we have to wait hours upon hours before anything significant happens, and I feel bad that the person who brings me there has to stay up all night (or longer) just so I can find out it’s no big deal. Also, ER waiting rooms tend to fill quickly starting on Friday night and lasting through the weekend, since people can’t call their regular doctors for less emergent stuff – or they wait until the end of the work week to seek treatment, so they don’t have to miss work.

The ER has big signs as you enter that say something like “If you are experiencing CHEST PAIN or SHORTNESS OF BREATH, please inform the registration desk immediately”. Since they were both happening to me, I rolled up to the desk and pointed to the sign and said, “That’s me.” I waited about five minutes before a triage nurse came out and led me directly to a EEG machine to determine if I was having a heart attack right then. Things looked a little abnormal, but not “OMG” abnormal, so they walked me through the rest of triage and then brought me back. 

That was the end of anything that made sense for the rest of my visit.

A doctor came and saw me about 30 minutes after I was brought back, which seemed like a little too long for someone who might be having some sort of heart event. After listening to my lungs and asking me some questions, he decides I need a breathing treatment. I look at him and ask how that would help my heart problem, and he said, “Well, this will help us rule out something like an asthma attack”. “How about the fact that I don’t asthma?” Anyway, we had to wait for a respiratory nurse to come and administer the treatment, maybe another half hour. As soon as I was hooked up to the mask, other nurses came and tried to take me to CT and X Ray, and were told to come back when I was done. The breathing treatment did nothing for me but make me feel high and unfocused, which was not conducive to me answering the hundreds of questions nurses and doctors and techs had for me over the next two hours.

When I told the CT tech that I have had over 20 CTs in the last year, she freaked out a bit. “We usually recommend no more than 6”, she says. So I ask her, “Do you think this CT is absolutely necessary?” …and of course she says, “Yes.” I’ve asked that question every time I am asked to have a CT, and never ever has a doctor said, ‘Oh, well, now that I think of it, maybe we can do something else.”

When I got back, the IV ordeal began. The first tech poked me three times before she gave up, even though I showed her where most phlebotimists have had good success getting a vein. Then the doctor came back with an ultrasound machine, so he could visualize the vein before poking. Even with that, it took him three different tries to get a good line. This did not instill any confidence in me whatsoever. After that, I was given a small amount of pain meds – that did jack shit – and sat waiting for almost two hours. Also, after I witnessed my doctor put the needle in, then reach to a shelf with the same glove (thus contaminating the shelf) in a very habitual manner (which means this has happened before, with other patients), I asked him to change his gloves before he proceeded. In every other medical situation I’ve ever experienced, a request to wash hands or change gloves has been met with immediate compliance and no questioning. This doctor, on the other hand, looked confused and angry, and tried to explain to my why it wasn’t necessary. When I tried to point out how he was wrong, he copped an attitude and stripped the gloves off in a way that clearly communicated “I totally don’t want to do this, and I’m angry you asked”. 

After this, a brand new doctor comes to see me – maybe because of the glove issue, since I saw the first doctor still there. This part is going to make me seem less PC, but I hate doctors who can’t speak English well enough to be understood. This new doctor was some flavor of Asian, and I couldn’t understand her at all. I had to have her repeat herself three or four times, and then I would try to restate what she said to make sure I got it right. I was told I had a PE, or pulmatory embolism, which is a pretty fucking big deal, life and death stuff. She told me I would be admitted for observation and for further testing. I didn’t feel I had a choice, since I had a PE, so I agreed.

One of the big things about Meritus that makes it a bad hospital is that the ER is the nicest part of the hospital. Once you get admitted, you’re shown through hallways and rooms that are old, dirty, not well kept, and feel depressing. Not that I’m usually overjoyed about being in the hospital, but many decorate the rooms so it seems a little less like you’re in a prison. This fact was made sadder when I found out that the hospital had been completely renovated only a few years ago.  I was put on the “observation floor”, and considering how little actual “observation” I recieved, this misnomer should probably be changed.

I was brought a meal I couldn’t eat much of, and then the nurse chastised me for not eating more. When I explained to her I had food sensitivities that made most of this inedible, she told me that she would talk to someone in dietary to come up and discuss better food choices. Not only was it inedible because of my diet, but it was also completely unappetizing. I am pretty sure their miniscule portion of scrambled eggs were from a powder, having eaten my fair share of powdered eggs in my time. The only thing I was given to drink was coffee, which I can’t have because I am sensitive to caffiene. 

During the intake, I was never asked about what meds I take. However, I was grilled at length about every single personal item I had brought with me. From my glasses to my underwear and my wallet to my Nook. I stopped at one point and asked the nurse “Is there a lot of theft in this hospital that makes this necessary?” She looked sheepish and said, “Oh, no, no.” But it did come across as though they were much, much more worried about someone stealing my phone than knowing what meds I take or what medical conditions I have. (Which no one ever asked me except at triage, and that was from a set list, which didn’t include many conditions I have.)

Then I spent hours just sitting around. No tests, no doctor visits, no pain or nausea meds, nothing. Finally, Rave started chasing doctors and nurses down to find out what was going on or to ask if I could have more meds. This is when we both directly observed hospital personnel, on several occasions, sitting around talking amongst themselves about non-medical subjects (at least twice we saw really obvious sexual/romantic flirting going on).

Also, there are signs on the walls everywhere that informs you that personnel have smartphones, but “rest assured they are not being used for personal use, but to enable communication in the hospital”. Although I applaud hospitals experimenting with new tech to facilitate better care, these were the most annoying thing in the world. The problem was not the phones themselves, but that caregivers (at every level, from techs to doctors) would always answer them. No matter if they were in the middle of administering a test (like the CT), or explaining your health status, or while you were trying to explain what you were feeling so they could treat you. It’s like all of the bad habits of smart phone usage in the general public in a condensed form. It was so frustrating.

When I asked about my home med schedule, I was informed that I should take them from my own supply (which I always bring with me to the hospital, but not everyone does). Later on, a nurse or doctor (I was never clear on who was who, since no one introduced themselves to me, ever) flipped out about this, and demanded me to both list every med I took, and that I have Rave bring my med bag home at the first chance. Since they never gave me any of my maintenance meds while I was there, I’m glad we didn’t. It took forever to get any meds from the nurses, and every instance was treated as though I was being totally unreasonable for wanting nausea or pain meds. There are big posters that proclaim that they have a committment to treating pain, but my experience was the exact opposite. And this wasn’t the typical, “Wow Del, you’re on a really high home regimen of pain meds, so we don’t want to give you any more”, because I am on (comparatively) much, much less pain meds than I was a year ago. 

Finally, after waiting over 6 hours for the cardiologist to come (even though the other doctor said everything about my heart looked just fine, which was suspect in itself since I have heart problems they never asked about, like an enlarged heart), having been assuaged that I was next in line at 9am and it was now 3pm, the hospitalist came in and I asked her if there was any reason for me to stay in the hospital if everything looked good. At some point, the fact that I was told I definitely had a PE kinda went away, as no one else had heard this when we asked. Also, the fact that I had been told I was to be given a diruetic since my legs were swollen never happened either. So at this point, I see no effing reason why I needed to stay any longer. The hospitalist actually agreed with me, but asked me to wait a little longer so the cardiologist could sign off on my discharge. 

The hospitalist came back about 3 minutes later and said, “Oh, he won’t be able to get to you for a while, so you can just go home.” She took out my IV and told me she’d be back in a minute with my discharge papers. 10 minutes pass. 20. Then I decided to put on my clothes to make it clear I was leaving. A phlebotomy tech comes in and tells me I need another blood test. I tell her I was told, definitely, that I was only waiting for papers to be discharged. She, very confused, went and talked to the doctor, the exchange of which happened right outside of my door. The phlebotomist was clearly of the attitude that I was just being beligerent, even thought I had been calm and collected (no matter how angry I was at this whole fiasco) when talking to her. The doctor comes in and says, “Oh, you need to do this test before you can be released”. I said, “No. You said I could go home now, and the only thing in the way was getting the discharge papers. I’m holding you to that.” She shrugs and says, “well, we don’t really need it anyway.”

As one last “Fuck you, Del”, as I signed my discharge papers, the nurse pulls out a “Against Medical Advice” (or AMA) document. This is what you have to sign if you leave a hospital when the doctors have clearly told you you shouldn’t. She tries to quickly explain that because I refused to stay for another test, I had to sign myself out AMA. 

“Bullshit.” Was my answer.  I refused to sign. This means that if I ever go back to that hospital, I will be marked as a non-compliant patient, which definitely affects the care you receive. But you couldn’t drag me back there if my life literally depended on it.

There was one moment of levity, though. At one point, a tech came to put on the EEG machine and started using masculine pronouns. The nurse or doctor who came in heard this and tried to correct the tech. The tech looked at me and my only answer was “I chose a gender-neutral name for a reason!” For the rest of the exchange, the tech used male pronouns while the doctor/nurse used female ones. It was amusing.

But not amusing enough to make me ever want to go back there. Or send anyone I care there if they need more than stitches. I will find a better local hospital, or I will endure the drive to JH.

 

 

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