more waiting

This time on the hospital to set up the outpatient IV fluid treatments and weekly blood draws.  And boy could I use the fluids.  BP today is back down, 86/56.  And I feel it.

I had my ultrasound yesterday and then neuro appointment.  Too much running around, not enough food or fluids.  I tried, but I guess I fail in the keeping myself hydrated front.  And the extra diarrhea yesterday AM doesn’t help.  No, not one bit.  (tmi?  guess what kids, it’s a health related blog and I have GI problems).  Ultrasound was quick, so quick that afterwards I went to talk to the registration people about the IV order my PCP’s office said they sent over.  When I had first come in to register for the ultrasound, I was greeted by efficient people who signed me in and then called me up to register me.  When I came back, that was not the case.  One woman was staffing the desk…a woman whom I dubbed “Bumbles McJudy“.  Bumbles was in a state because there were TWO (Horrors!) people at the desk patiently waiting for her attention.  I explained what I was looking for when she called on me.  Twice, no twice and a half actually because after prompting me to explain it a third time she cut in with a frantic “Ok ok ok, I, um, ok, just have an um, have a seat and I’ll be with you in a minute.”  20 minutes and a growing line of “have a seat” people later, I got up and said “I’ll just call later,” and left.  But then later was the neuro appointment and then it was too late so now I will call on Monday and I hope have time to set up an IV appointment for some time next week.

The neuro appointment went ok.  Nothing major.  He asked about whether I called my PCP about the blood pressure and did they see me right away.  I told him yes, I called and they saw me as soon as they could.  He was relieved “because that was alarming” in reference to the hypotension.  I told him I usually run a bit low but not this low and showed off my lovely forearm bruise from where I tripped on my own feet and fell into a door frame.  “That really bothers me.  What did he think it was?” the neuro asked (“he” being the PCP).  “Um…’severe orthostatic hypotension, spontaneous dehydration, intermittent diarrhea’.” I said recalling the wording on the IV order.  “But WHY?” he continued.  The answer I wanted to give was “fuck if I know” but I use radio-protocol in this guy’s office since he’s sort of religious and I figure he probably would react poorly to my day to day potty-mouthed speech.  “No clue.” I said.  We talked about the diarrhea and CFS and fibro for a bit.  Then on to the MRI.  “Had an ultrasound of the thyroid, PCP ordered it” I told him when he mentioned the nodules. “Good, it’s probably nothing, usually these things are, but I’m glad he ordered it.”  Then on to the spinal stuff.  Stenosis at the nerve root at C5/C6, plus my EMG from last year.  “It looks like a healed injury” he said and asked “Did you ever hurt your neck?”  Nope.  We went through a very thorough history of Dyspatient’s possible neck/upper body traumas.  Not much.  “Uh, my sister threw me off a bunk bed when we were little and I hit the floor flat on my back and it knocked the wind out of me…but that’s really all I can remember.  I tend to land on my knees when I fall.”  He made a joke about me landing like a cat, and asked how old I was for the bunk bed wrestling match….too young he said when I told him I was probably about 7 or 8.  “Any shocklike feelings when you turn your head or put your head to your chest?”  “Any pain when you strain, cough, bear down?”  No, not that I can remember when the neck pain is going (which it wasn’t yesterday)… “Yeah but you minimize” he told me.

Stop the presses.  A doctor actually said I MINIMIZE.  Not catastrophize.  Minimize.  I’m going to ask my therapist about this, see if she agrees.  I know how I feel inside but I’m interested in knowing what my reactions come across like.  I’ve gotten very conflicting messages, although in the last 8 years and in medical contexts, usually I am told or get the impression that I’m seen as OVER-reacting/making mountains out of molehills/NOT minimizing.

Neuro doc and I ended with him saying I should really get massage therapy, asking about my medication use since we last met, and telling me that he could do another EMG but that he doesn’t think it’s really necessary right now but that I should let him know if I have more weakness or tingling in the arms.  Ok.

I’m alright with this.  He made sure to tell me that if I needed to see him, I should call.  He also recommended a GI doctor who wasn’t a dumbfuck (I had related some of my experience with the last guy to him, and quite validatingly, he was clearly annoyed with the guy’s approach.  “Did you know that there was a recent study that found a very large number of doctors have Asperger’s?” he asked.  I laughed.)  I didn’t feel like the neuro was pushing me out or incorrectly declaring me all better, or closing the door on my following up with him if I needed to for the migraines or neck pain or arm symptoms (which I still think go more with the migraines than not).  Amazing how much difference the approach makes, doesn’t it?  I mean, the neuro pretty much said “Yeah, I don’t know what’s going on here” but because he didn’t then suggest I was nuts or faking and didn’t wipe his hands of me, I can handle it.  And I know that I can call him if I need him.

And Monday, I will start the next round of phone calls and proddings of doctors, nurses, registrations clerks and whatnot.  And in the meantime, apparently I will just keep drinking the pedialyte (yuck) and gatorade.

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4 Comments

  1. Is it wrong that I want to french your neuro????

    He sounds dreamy.

    I’m all hot and bothered now.

    Sorry you are not feeling well. Pickle juice helps my bp come up when it bottoms out–sort of a down and dirty version of saline via IV.

    RE: Massage therapy, try to find someone certified in neuromuscular and positional release so they can draw on both for the best treatment. And don’t be afraid to date around until you find the right therapist.

    M

    Reply
    • Hi P.o.P. Nope, I think that’s an appropriate response. I totally do pickle juice, since reading it on your blog! I wonder how I can look for massage therapists who do this stuff? Any suggestions?

      Reply
  2. queenofoptimism

     /  June 16, 2011

    o m g …. I’m freaking out. What the hell is your body doing to you? I mean it’s been bad but this is outrageous! Too much at one time. And, then, this neuro is like an angel or something. It’s so hard to comprehend, I feel like he’s a mirage. Where’s an endocrinologist in all of this or did I miss it because I am freaking out with concern for you and shock over your body and this doc? An ultrasound of the thyroid is fine but they need to get samples from the blobs. It just all makes too much sense that you’d have a problem with your thyroid considering the body temperature and hypotension but why would it take this long for someone to notice?

    It just shouldn’t take so long to get to a lookout for answers and in the meantime I’m totally worried about you – the scary hypotension and dehydration business. I want to scoop you and keep you by my side 24/7.

    I know you’re busy and sick but please update when you can. I freaking out!!!

    Reply
    • Thank you Queen. I’m hanging in there. BP had been doing a bit better. we made a special drink…iced tea with salt and liquid potassium supplement added. Not yummy. I’m still looking for a sports drink/electrolyte thingie that ISN’T going to strip the enamel off my teeth. Sounds silly but gatorade makes my teeth throb for weeks (ginger ale does it too, probably any other soda too but I avoid the others) . Endocrine. Saw one last summer. He kind of fumbled. My primary wasn’t happy. He’s recommended I try another one, or maybe it was try the same one but after the PCP calls him up and explains he fumbled and tells him not to do it this time. but I’m reticent after that rotten experience with the new GI doctor. So I put it on hold. That was pre-thyroid nodules though. It may be time to revisit.

      Got my IVs on. Weekly, with weekly metabolic panel, CBC, and lytes bloodwork. Hoping it’ll help.

      Thyroid. Eh. I got the report from one of the nurses at the PCP’s office. My husband nicely summed it up as “wow, so they confirmed that you have stuff and stuff with a thingy on the whachamacallit. Really advanced medicine!” The real report went something like “three nodules (yes, we knew that) follow up ultrasound as indicated”.

      Because if you’re 80 and asymptomatic, thyroid nodules are normal and probably nothing at all. But if you’re 39 and your most burning medical complaints of an array of chronic medical complaints fall into the “hey that sounds like endocrine”, you should probably NOT be considered to have normal nodules until that is proven.

      But you know, that’s me. I sent the nurse off with questions. 1) What does “as indicated” mean? 2) Did anyone want to at least do a set of thyroid function tests? I’m not in a rush to have a needle in my neck….is that the only way for them to check whether these are “hot”, “cold” or normal?

      Looking at the work time off has put me in something of a mood. I started crying in my therapist’s office yesterday talking about it. What seemed most upsetting to me was the idea of having to explain this shit to a new boss (new boss starting on Monday) without any sort of decent, cohesive, less readily invalidated narrative. And I will have to explain some of it if only in the context of asking for time off. “You don’t have to explain everything. You just need to tell him that you need time off next week. Later on when you know him better, you can disclose more if you want to.” Ah, easier said than done. I’m glad we’re talking about this though. It’s a big concern for me. “Are you worried you’ll lose your job?” she asked at one point. “Yes, very much so. It’s not plaguing me right now but when I feel really bad it does.” She went over the whole “they’re not supposed to do that” stuff but I explained that I knew it happened anyhow (I was thinking of you, my brother, a dear friend from grad school) and that when it did it was a slow, erosive process. How do I know if I’m in the process, right now, just in the early stages of it?

      So something to think about and talk about, for sure. And in the meantime, more IV fluid and more waiting for the PCP’s office to get back to me on the next step.

      Reply

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