sometimes I just really want to go home

I really have no reason to blame the region where I live for what’s going on. After all, the doctors have caught that there’s something going on, and are trying to figure out what it is. I trust them to figure it out, and to recommend treatment. Today’s doctor’s appointment, to the hematologist’s office, revealed a slightly higher platelet count–81,000. That’s some 60,000 below the minimum threshold for normal. So not good, but not as worrisome as it would be if it were below 50,000, or imminently dangerous, if it were blow 20,000. 

More disturbing? The bloodwork from 2009, when I lived in Ohio, showed low platelets. So this is a long term condition, predating my pregnancy. What’s funny about that is NO ONE SAID ANYTHING back then. During the fall of 2009, I had a few episodes where I was horribly, miserably sick with pain and digestive issues. I even went to the ER in the middle of the night. Diagnosis: nothing. Maybe an ovarian cyst. No mention of anything looking off in a test at all. Although a radiology tech told me she saw a strange “shadow” near my gall bladder but then the doctors said that was nothing. I was really miserable a lot for a month or so, but then it was gone. Although I have needed more sleep, have felt more tired, and have had more of a tendency to feel down and lethargic since around then than would have been my old normal, I didn’t have any more episodes of massive pain. Of course, we’ve had major life changes since then, including moving to the South, where I often feel like an unwelcome foreigner. So who knows what’s what here. I could be writing a cause backward, or these things could be related.

So why the title of this post? I also had an ultrasound today of my abdomen. I don’t know the results yet, but the tech mentioned my liver was “not really bad.” I asked what she meant, and she said, “It’s not the biggest I’ve seen; it’s about 17.” I asked what that meant, and then she hedged a bit saying, “it’s hard to tell because your uterus could be affecting its shape,” and then nothing. This was at the radiology center, before I went into the doctor’s office and had the better CBC. I had my blood drawn, and then we were sitting in the hallway. The doctor came along and told me my CBC looked better but that he had my records from 2009. He said we’d talk about it next week when we have all the records gathered. I tried to express how nervous I was about the U/S results, and he said he’d have to get the radiologist report first. We were in the hall, with other people, other patients milling by. So here’s where I miss being up north, and especially in Michigan.

This is going to sound crazy to northern readers and probably to southern ones, and maybe even to other transplants. But one of my biggest issues here has been my inability to communicate. Seriously. Obviously we all speak English–I’m not talking about that. But there are ways of doing things down here that confuse me, make me unsure of how to navigate situations. Things turn abrasive, unpleasant far more quickly than I can understand. Supposedly Southerners are more polite, but I’ve had more bewildering responses to simple comments just in the 1.5 years I’ve lived here than I have had in my entire life. That estimate includes my two years in Israel and my visit to Russia. I’ve majorly pissed people off just by asking for whip cream on my hot chocolate after I ordered it that way and it came without. I don’t like going into my bank anymore because of a confrontation with an employee there when I simply asked her why their website isn’t compatible anymore with Quicken. I swear I did these things politely-I’ve had no history of unpleasant confrontations before and I’m used to being considered very smiley and friendly. It seems the local culture doesn’t take well to “complaints,” even when actually they’re just what I’d see as inquiries. 

So, I’m not happy about waiting until next Wednesday to hear the results of the ultrasound given the tech’s comments. Really not happy. I’ve spent all day trying not to continually google terms about large livers and low platelets, although I have done a little. They’re not happy searches. Anyone would be nervous of course. But combining this with a high risk pregnancy, where I’m sedentary and alone with my thoughts so much anyway? Combining this with trying to teaching next week, when I’m already anxious to not be doing that, and extremely nervous about how I’ll manage 7 and a half hours of lecturing by sitting in a chair? I really feel like it’s too much for me to bear. I feel really close to my personal edge. Which I know is presumptuous given that there are cancer patients every day in the hematologist’s waiting room, some of whom look really, really sick. As well as all the other typically really sick Mississippians milling about. 

If I were back in Michigan, or Boston, or IL, I feel like I’d know what to do. I’d call up the doctor’s receptionist and honestly plead my case. But when I call up someone here, the most likely result is that I’ll have to repeat myself at least twice because they never understand me. And then, they’ll likely think I’m demanding something special and criticizing some policy, rather than pleading fear and vulnerability. And finally, appointments for anything are tougher to come by here, so they really might not have anything. 

Not to mention the biggest kicker, despite being faculty at a major research university, our insurance is abysmal, and every time I whine myself into an extra appointment, we’re set back a few hundred dollars. So I have to wonder, is my fear and paralysis worth that, when we’re only just now earning a little more than we spend? Would it make any difference in the long run in terms of treatment and response? Seriously, my pregnancy already cost $2000 last year just to get out of the first trimester, after insurance paid its paltry amount (and don’t ask what the premiums are) and that was with only one panic-induced appointment. The clock started over on January 1st. Have I mentioned before I think insurance companies are criminals?

Update: I’m going to take my sister’s suggestion and call the OB nurse tomorrow, tell her how anxious I am, and see if that’ll get a phone call from my ob/gyn to speed up the appointment. She agreed (and has reason to know these things) that I’ll likely not get very far calling a receptionist who doesn’t really know my history.

8 responses to “sometimes I just really want to go home

  1. would it be possible to get an old ob-gyn from Natan or Samuel on the phone and plead your case that way? you just want to know what the differential is, and what tests happen next to differentiate, right?
    maybe they have an opinion?
    oy, so sorry about the cultural stuff

    • Thanks, Liza, I would feel like I could if this were something an ob/gyn would know about, but really they only know about ITP of pregnancy, and this is a separate illness now. In terms of my pregnancy, at the very least, we’ll have to get my platelets up before delivery via prednisone but I won’t know anything more until a diagnosis. Also, what is clear is that the possibilities are so wide and varied that no one would be able to offer an opinion on next moves until we have that diagnosis.

  2. As someone who grew up in the South, my guess is that your tone is being read as more demanding than polite (not that you’re doing anything wrong). I would definitely call back and write out a script beforehand. Something along the lines of: “I talked to the doctor but I am just SO worried I was wondering if a nurse or even the doctor might be able to call and talk to me now? I really don’t understand what is going on and would really appreciate if someone could explain it to me.” I think that people may be more annoyed to find out that you’ve been consulting Dr. Google (whereas in NYC I start every appointment by explaining my fears and what I think is most likely going on and it never offends anyone).

    I hope you get some answers soon.

    • Thanks, Rachel. Honestly, I think it’s my accent more than my tone. I’m originally from the Chicago area and my vowels are harsh and get more so when I’m upset. I try really hard to moderate it and I often do rehearse my phone calls! The only accent I can affect though is East Coast, and that’s certainly not better. It’s kind of like how a Northerner might often assume a Southerner isn’t intelligent because of his/her accent. When I moved here, I realized I had to shake off that gut reaction. But because I’m the stranger in the crowd, I’m aware that I’m doing it. I never admit to a doctor that I’m googling anything, but they do know I talk to my sister, who has a background in pathology. So I don’t actually have a problem getting taken seriously by doctors, just by the people between me and them. The problem with the doctor this time was the damn hallway (and he’s Eastern European actually, so unlikely to think I’m rude).

      • All that said, this is my problem, so I do need to figure out how to just get past it. I just wish the stereotypes weren’t so entrenched–I think people expect a certain attitude from me the moment I open my mouth and then see/hear it.

  3. Dammit. Oh, God, Sara. I was thinking about you today. I have a long ranting response, but for now, I’ll just say,

    Hell, yes. I can’t wait to get the f*ck out of here.

  4. Sara, I’m going through the exact same thing! I’ve always gotten along with people and I can’t recall being involved in a single negative interaction in a commonplace situation, and yet down here I feel like I’m alienating myself constantly. When I try to make normal conversation, I can see the faces of my companions fall, or tighten up, or become lost. And when they speak to me, I’m often confused by their choice of topic or tone. I’ve had so many uncomfortable moments with doctors, receptionists, preschool teachers, etc. I don’t know what you should do, but I feel terrible that what has been an uncomfortable inconvenience for me is something that is getting in the way of you getting information about your health.

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