“What’s going on?”

A friend recently asked this with regards to the health stuff.  She’s been a great friend through this.  She’s busy with her kids and her life several states away, but when we talk about my health problems, she listens and she asks questions and she expresses concern, support, and empathy.  I am so grateful for this.  Especially today, since it contrasts so sharply with some family of mine – specifically, my sister.

My sister knows I had my big follow up appointment on Thursday.  She called me Thursday and Friday, both times leaving a long voicemail message all about her.  Ok, whatever, she’s got her own stuff going on (looking for a new job to escape her PI who has modified the animal research protocols in her lab in bad, bad ways and who is truly an awful boss).  My sister and I talked today and we spent about 3 minutes out of the 45 minute phone call talking about my health stuff and then the rest was all about her.  And not anything new about her and her job search, but a replaying of the top ten greatest hits of what I call “fear and loathing in the biomedical research job hunt”.  She’s massively PTSD from all the family crap, and she has a tendency towards obsessive behaviors.  This was not a fun conversation.  Her transition from hearing about my medical news to the many minutes too long rehashing of the same old shit about her was quite abrupt:  “So, I don’t know if I told you but…” and then on to the thing she has told me nonstop for the last week.

Ugh.  Draining.  I’d understand if I was always unloading on her about my health problems, but truly I am not.  Part of why I blog so much on this shit is that aside from my husband, I don’t have anyone else in my day to day life that I do talk to about it.  Not honestly and unguardedly at least.  Privacy issues, stigma, and the emotional nature of dealing with chronic, disruptive health problems all keep me skimming the surface most of the time in my day to day.  I am very conscious of not wanting to “go on” about this stuff with people.  But I thought at least that my sister would give a shit about the outcome of all that testing.

Sometimes I’m such a blithering optimist.

So here’s what I wrote to my friend who asked “What’s going on?”  The topic started out because I asked if she had a suggestion on glucose meters (her husband’s got type 1 diabetes).  I figure this is a decent update for the blog too.

I got a new doctor who is doing an exceptionally thorough work up. So…had a glucose tolerance test and I’m hypoglycemic. I’ve been dizzy all damned week so he wants me to get a glucose meter to see if the dizzies go with blood sugar. I did a thing called a “tilt table test” a few weeks ago too. It’s meant to test autonomic function, which I guess in this case is really just about looking to see if your nervous system and your vascular system talk to each other right. And I failed it. They put you on a table and hook you up to a heart and BP monitor and you do all sorts of strange breathing exercises. Then they tip you upright to about 60 to 70 degrees so you’re basically “standing” without having gotten up and with most of your weight being borne by the table you’re strapped to. If you nervous system and your vascular system coordinate properly, you might get a little lightheaded but you don’t pass out. I passed out.

This wins me a cardiology consult and a nephrology consult (kidney). Cardio is to make sure it’s not an arrhythmia which has me feeling like shit all the time and which would account for the whole passing out/shittty vascular response I showed on the tilt table. Also, the doc heard a mitral valve murmur when I was in for my follow up (with dizzies).

Nephrology is because I guess I keep testing out as being dehydrated (that whole orthostatic hypotension thing, I stand up but my blood doesn’t) but having low sodium – that plus the feeling like shit plus the passing out on the tilt table might mean my body’s not balancing fluid properly. Apparently nephrologists check that.   Or this nephrologist checks that.  And hey, funny story – the nephrologist was a wee resident I and my sister worked with at the hospital wayyy back in the late 80s/early 90s.  Small world.

And then there’s an endocrine appointment. This is for the hypoglycemia and the feeling shitty.

I also have to pee in a jug for a day and do horrible things with poop and cups and vials and whatnot.

The common element in all of these appointments is the feeling shitty. The new primary care is being remarkably thorough about following the leads, which, while a bit of a pain in the ass to go through is good because I truly do feel fucking shitty and I’ve been dealing with this shit for years now. I’d like to know if there is something that can be identified and treated and he’s the first primary care I’ve had who seems to be interested in leaving no stone unturned before handing me the “well you’re just fucked, I have no answers, enjoy feeling shitty all the time, bye!” answer.

I signed myself up for this. After I discovered my boss was not going to be ok with me having surgery this summer and after I realized how much my (former) primary care largely was not good, I decided to (a) postpone surgery until winter break and (b) spend some time in the meantime finding a new primary care and hopefully getting a handle on some of this feeling shitty all the time shit.

So it’s finger sticks, cups, vials, and jugs for me for the next month or so.

That’s what’s up. And that’s also what happened to your care package that I said I was going to send you before the family road trip west. Once I saw this new primary in June, it was kind of like the staring pistol for a marathon….I had the tilt test and a round of cups and vials the week I was going to get stuff together for you. It ended up a bit of a mess. Sorry. I felt bad. Which is also why you haven’t heard much from me.

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7 Comments

  1. R. G. Maines

     /  July 10, 2010

    You have been going through so much! I’m sorry I shared my stuff with you, when we emailed. We all have so much on our plates, it makes it hard to vent to one another, without feeling as if we’re overloading someone just as stressed and overwhelmed as we are.

    I hope you’re doing better.
    (((Hugs))) oxox

    Reply
    • Oh no, please don’t feel bad for that. It is really and truly fine. I’m not overloaded by your troubles. I am sorry for them, but it’s nice to have someone reach out – it’s nice to have a chance to be there for someone too. I’m sure you know the feeling, you want to do more but you can’t. So when all I need to do is listen and be kind, it’s a good thing all around. ❤

      Reply
  2. queenofoptimism

     /  July 10, 2010

    What a wonderfully accurate description of what you’re going through. You’re honest, straightforward, and so real. Most of the rest of us (patients) glaze over it so much and/or feel sad about it so much we can’t even put it in to words.

    So what does the pee and poop have to do with everything? Nephrology?

    I’m amazed at how fast the new primary is working on getting to the bottom of the shittiness. Keeping my fingers crossed that there’s more to it than feeling shitty for life.

    -Q

    Reply
    • Other than in this context, I’m only that straightforward with two friends, my husband, and my doctor(s). I think working in the hospital helped. I know it helped when I sat at the lab on Friday and had the tech go over the collection protocols with a packed room of patients sitting behind me. No privacy there! No ma’am! “Ok so I freeze the cups (of poop) and the pee goes in this big jug. In the fridge. Ok. Got it. Now what do I do with these vials?” I think they need to work on that.

      The poop was a long time coming. I’ve had chronic diarrhea since Fall of 2004. I’ve lost a ton of weight, gained it back with meds, lost it again, increased the meds. Rinse and repeat. I’m not terribly well nourished it seems even when I do take enough drugs to stop the flow. My vitamin D is low (single digits) and is hard to keep up. It’s been called IBS for lack of anything else. I’m having a capsule endoscopy in August and in the meantime, since no one has done an ova and parasite screen (did one, times one, which as I’ve learned from my brother having giardia many, many times is two less than standard) he wants that. Times three. Hence the vials. And then the cups. That was because there was a high level of fecal fat on the collection I did for this guy a few weeks ago so he wants the full monty stool collection on this one.

      The pee is the passing out/orthostatic hypotension thing. I try to stay hydrated because I was hoping it would help keep my blood pressure up a bit. But I am always “down a quart” it seems, or so I’ve been told (by various people trying to get needles into my veins). And my sodium is consistently low. Not super low, but consistently low. So he wants lots of pee. I think the 24 hour urine is for something else. I’ve honestly forgotten what for.

      Now the funny part of all this is the nephrologist. I kept thinking “man, that name is so familiar!” and then I realized he was a resident at the hospital my sister and I worked at while I was at college. And uh, well, this could be an interesting visit. I don’t remember him by face but my sister spent a lot of time chatting with him since she was one of only two night shift unit secretaries on and he was up on her unit a lot at night. This fellow heard quite a bit about me as a young un…and those were probably best described as my “wild years”. I’m hoping he’s long forgotten a some impulsive choices I made with a certain surgical resident. I know he and my sister talked about on more than one occasion in those days. As in “why? Why is your little sister with HIM?!” Well, at least I can expect he has the decency not to raise that topic even if he does recall it. 😉 That’s what being a professional is all about, and it’s a strangely small world here in the back yard of the B.A.T.H.s

      Reply
      • I find the nephrologist story absolutely hilarious. I appreciate that I had a past of young fun as well and hopefully this guy can appreciate it about you, too. It’s amazing how much changes, huh?

        I’m glad that they decided to put you through the body fluids thing all at one time. I’ve done the poop and vials thing with self mailers.

        Sorry to hear you’re still feeling shitty today. I know that sinking feeling of what you have to accomplish vs. what your body will let you. It sucks. I’ve got one of those weeks coming up, too. I’ll be thinking of you.

  3. queenofoptimism

     /  July 10, 2010

    PS Glad you have a friend who really wants to know.

    Shitty that your sister adds to the shittiness. Ugh.

    Reply

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