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.