Tuesday, March 09, 2010

I guess I forgot the "cautiously" part of being optimistic.

Just when I thought happiness, physical and mental health, concentration, and finishing my degree were attainable all at once.....the universe knocked me out. Almost literally, but not quite.

I was headed to a NOW meeting Sunday at a restaurant. I'd noticed that my hands were shaking that morning, but just chalked it up to a reaction to one of my numerous medications. Let me define numerous, just for the record, and because it helps if I can look back on these things later: I'm on Wellbutrin 450 mgs, Synthroid, Cytomel (those are thyroid meds), Phentermine 60+ mgs (for weight loss), Anafranil 100 mgs )(antidepressant for obsessive thoughts), Seroquel 1,000 mgs (antipsychotic), some muscle relaxer I can't remember the name of because it's not too important (Methocarb something), Klonopin (1 mg, because I've been on it forever and it's hard to get off, though I do want to be rid of it), and the lovely biweekly injection of Risperdal Consta, 50 mgs (antipsychotic that actually works for me).

So, I figure, a little hand shakiness is just a reaction to one of these meds, or something else unimportant. Then, while I'm driving, my feet feel like jelly and the gas pedal feels like I'm not touching it. I am going numb in my hands and feet. I think there's something wrong with my blood sugar, and I need to eat something. I get to the restaurant and tell this to a couple of the women there for the meeting. One is, luckily for me, a nurse. She takes my pulse and says it's high. I try to act like I'm not feeling incredibly and rapidly ill, but I can't hide it for long because I can't stand up, and can barely sit up, and then I can't feel my face, or my hands, or my feet - they're all numb. Then, I can't keep my eyes open. By this point the nurse already had me drink some orange juice with extra sugar, to see if that helped. It doesn't seem to help. Next thing I know, I can barely talk, and am having a hard time catching my breath. That's when I say, "I think I need to go to a hospital". I can't get in touch with my mom or my sister to have them pick me up. The nurse is now hollering at the restaurant manager, "You need to call 911 for this girl fast!"

After that comes the gurney and the trip which I don't see much of since, for some odd reason, it's hard to hold my eyes open as they are twitching uncontrollably. I am so weak that, when the paramedics try to take my blood pressure or put a thermometer in my mouth, I can't hold my arm up or get my mouth around the thermometer. Things are getting a little scary.

Then I'm at the ER, and then there's tests done, like an EKG and a brain scan, and then, of course, because this is the story of my life, the doctor tells me nothing abnormal is showing up on the tests.

At one point, after giving the entire list of all my medications to yet another person, I start crying because I know, I know, I know, they're just going to tell me they don't know what's wrong and maybe it's a psychiatric problem. I know I'm physically really sick and something is really wrong, but I know, because I've lived this sort of thing (though not this abruptly severe) before. And you don't forget that kind of crap. You don't forget how insulting and frustrating it is to know that you are really ill and have some doctor tell you that you have no abnormal test results.

Hence, I am wary of talking to these people at all. I do not have any faith in their ability to help me with this situation. I am well aware that I'm basically on my own with this, because the emergency room isn't set up to help people with chronic diseases that are not considered emergencies, and I know a lot about that from some heinous past experiences that I thought I had put behind me long ago.

I also know that they're going to be looking at the records from when I was here before, and when I was at this hospital last is the day five years ago, that I was taken in handcuffs to a psychiatric ward at a different hospital after six police cars arrived thinking I had a gun in my hand (I didn't, but there was one in the trunk and I was intending to shoot myself with it later, so it's kind of good that the police arrived). I had forgotten that all that history was going to be dredged up if I entered this hospital. Of course, it probably is.

Basically I'm now back to square one. Time to worry about my health again. I'm back to where I was a few years ago. I'm unofficially diagnosed with Sjogren's Syndrome, although it failed to show up on the lip biopsy I had done last year,and officially diagnosed with Mixed Connective Tissue Disease, since my doctor, a kind rheumatologist, knows that I'm not some "crazy" person making up psychosomatic complaints, and she takes me seriously. She still thinks that I might have Lupus, but I don't spend a lot of time thinking about that, since, normally now, I can manage to get through my days with relative ease. Not anymore. Since this episode Sunday, I'm totally exhausted and feel like I felt ten years ago, when I was diagnosed with dysautonomia (orthostatic hypotension). That was not an enjoyable period in my life. I was basically bed-bound for the greater part of three years. I don't exactly want to go back to that.

The doctor at the ER, before sending me home, did say that she knew there was something wrong, and she just didn't see anything on the tests, but I should follow up right away with a doctor and probably see a cardiologist. So, I'm doing that. I'll see if that cardiologist knows anything at all about dysautonomia, which is the most likely cause of my current predicament, and if she has any other ideas on what the problem could be.

But that's next week.

Right now, I just want to get through this week, as I'm going to a NAMI consumer conference a few hours away, with a group of people. We all got scholarships to go, and I think it will be interesting and fun, or at least, I thought it would be, back before I started to feel like this.

After a couple of hours in the ER, I could walk and talk, and probably chew gum at the same time. So I'm not in that horribly weak position right now. However, I definitely don't feel up to par. I don't feel half as well as I felt four days ago. I'm really hoping this is not a long-term situation, because I don't feel like I have the mental stamina to go through that illness/stillness hell again. I need to work, and I need to complete my degree, and I just do not have time for a sickness to take over my life. Damn it.


  1. Wow Jen, I'm sorry you had to go through such a scary experience. Definitely get the tests done and try not to worry. Worry and negativity will do nothing to help you. Yes, pay attention to your bodily signals, but don't ignore that you need to be extra good to yourself right now; try not to let yourself dwell on what might be wrong. It sounds so trite, but remember to spend a little time each day thinking of what is going right for you, rather than wrong. Or in other words, a gratitude list. It's just when you're down that you need to work to look up from time to time. You are a strong woman and you have come far and this is not going to stop you. So take good care of yourself and keep us posted on new developments and progress.


  2. Jen, I'm so sorry that happened to you. It sounds like it was scary, but I am so glad you were not having a heart attack or a stroke or something like that. I hope it turns out that you are just fine. I certainly have heard of scary and unexplainable things happening to people where it ended up that no one really knew for sure what had caused it and the person turned out to be okay. Something like that happened to my mother once and she was rushed to the ER and it seemed like a stroke or cardiac event, but she was fine. Still these years later, no one knows what it was. I hope you are okay, too.

  3. I think this numb sensation story tells you just one thing. To slow down. Saying that you don't have time for illness is very selfish, because it translates: I don't have time for my body to have rest.

    Also I think you take too many pills.


  4. I think you had a panic attack. I get those about once a year. You probably don't think its a panic attack and I didn't either when the doctor told me, but I know it was now. I lost vision and was sweeting profusely. Anyways I just started a blog at dustindemoss.com you should check it out sometime.

  5. Jen...I found you again...my computer was out of commission for a week...gosh...that was an awful scary thing to happen...have you found out what it is yet? I hope you get some relief...


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