April 20, 2013

I am SICK

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So, I am sick.  And it's really frustrating.

Last Wednesday (after a huge debacle trying to get it on Tuesday night through the ER, which didn't happen), I had a lumbar puncture.  I spent the afternoon in the hospital, they stuck a big needle into my spine, and they removed 4 vials worth of spinal fluid.

One of the reasons for the spinal tap was to measure the pressure in my head.  Normal pressure for an adult is about 7-20 mmHg depending on where you look.  My opening pressure was 35+ mmHg.  They confirmed the diagnosis of Pseudotumor Cerebri or Idiopathic Intercranial Hypertension (IIH).  Short explanation: I have too much spinal fluid and it's putting pressure on the inside of my head and causing my optic nerves to swell.  The reason for removing the spinal fluid was twofold - to relieve some of the pressure, and to test it for viruses etc. and make sure nothing else funky is going on.

Why is this happening to me?  Who knows.  They don't really seem to know why it happens.  PCOS & hypothyroidism are risk factors, and being an obese woman between 20-44 increased my risk 20 fold.  That being said, who knows?  No one.

What does it mean?  I don't know that either.  I started a diuretic called Acetazolamide on Thursday, which is supposed to make me stop producing as much spinal fluid.  Apparently the does I'm on is a starter and will get upped, but I am taking it four times a day.  Thank God my phone has an alarm.  Sometimes it makes my hands and feet tingle a lot, and I have lost at least 2 lbs of water weight in the last 2 days.  That is one part of the treatment plan, and losing weight is another part of it, and you know I'm working on that.

As for the rest, I have no idea.  I have no idea if this can be cured or if it just goes into remission for some people.  I have no idea how long it's going to last.  I have no idea if I'm going to have to have more spinal taps as part of the treatment or how many.  I have no idea how long it will take for my visual symptoms to get better.

I have an appointment Monday afternoon with a neuro-opthamologist, who will manage my treatment along with my regular eye doctor and I guess I'll get answers then.

For now, I am feeling kind of lousy.  I'm not very good at recovering.  When I looked online to see what the recovery should be like from the lumbar puncture, some people said they were ok a few hours later and others said it put them out for a week.  I have been having some headaches from it and a ringing in my ears that gets worse at times.  The headaches are not bad enough to go back to the doctor, it's pretty common to have headaches in the days after and ibuprofen and laying down help.  I have been feeling sort of weak and nauseous and I'm not sure if that's part of the headaches or a side effect of the medication.  There really isn't any way to tell for now.

This is all extremely frustrating for me.  I hate feeling like I can't take care of things like I want to.  I have been feeling sick for close to a month now, the first week was very bad, then it was a bit better, but the last few days since the LP have been pretty bad.  I went to work on Friday and then we had our end of tax season dinner and I had to leave early (well, early's relative, it was just after 9 pm and we'd just gotten our dinner) because I felt so nauseous and dizzy that I couldn't stay in the restaurant.

Justin is behind at work partly because he's had to take time off to go with me to doctor's appointments and stuff, and so he's stressed out, and we haven't been spending much time together because at night I'm so exhausted I'm falling asleep and he's trying to work to make up some of what he's missed.

Even though I know everyone cares about me, I still feel like I am asking a lot of people and that I'm letting people down at work by missing so much time for doctor's appointments, procedures, and recovery.  I hate missing work and I rarely call in sick, if I do, it's much more likely to be because my kid is sick than I am.  I know they care about me and just want me to be well, and now that tax season is over it's not a huge deal.  But inside, I still FEEL like I need to be there and feel bad when I'm not.

I know that my Mom want to help with the kids so that I can be well, but I still feel bad asking her to help me with them all the time.

I know that people care about me, but I don't like feeling weak and like I can't get things done.  I don't like having to ask Justin to do all the chores and feed everyone etc.  I don't like feeling like at the end of the day I can't get anything done that I WANT to get done because I'm just too damn tired.

I also don't like to accept the fact that something semi-serious is wrong with me.  I have a hard time admitting or even knowing when things are too much and letting myself give in and take down time because I feel like either I can or have to power through whatever I can.  I have a hard time judging when something need to have attention given to it and when I can just sort of shove it to the back burner.  This is new territory for me.  It's a little scary, but mostly it's just really frustrating.

This all just sucks.  I'm frustrated.  I just don't feel WELL.  And I don't have answers.

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