April 20, 2013


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.

April 16, 2013

Week 5: Going Blind Because I'm Fat (ok, not really - too soon?)

Current Weight:  233.4
+/-  this week:  -2.6
+/- this round:   +1
+/- total:    -33.6
Short Term Goal:  222.4

Avg weekly loss needed to reach 189 lbs by age 33 (31 weeks): 1.4 lbs/wk

Well, things have been kind of crazy. Sorry for the lack of update last week, but the last week has been a little crazy. First off, I work at a Tax & Accounting office, so last week was basically the craziest week of the year for us. It was fun, but a tad stressful at times.

I also went to the eye doctor last Monday. In my last update, I mentioned that I'd been having some vision problems like spotty vision and shadows around the edge of my vision. It started about 3-4 weeks ago when I was sick and had this immense pressure in my head and was getting headaches a couple of times a day. Some people suggested that I had a sinus infection, but I don't know what it really was, it didn't feel like a sinus infection and it went away eventually - but the vision problems didn't. I kept waiting for them to go, and they continued. Now it is at the point where when I stand up from my bed at night or walk from a dark room into a light room my vision is so spotty that I'm effectively blinded for 15-20 seconds. I posted something on Facebook and everyone freaked out and told me to go see someone. So, I did.

I made an appointment with my eye doctor last Monday, they got me in same day, which was great. They did an eye exam and my vision is still very good, I may need glasses at work since I sit in front of a computer so many hours a day, but it's not a big deal. But then he looks in my eyes and I hear him say "edema" and I know that means swelling. So he finishes looking and then says he wants them to take some photos of my eyes and then we will talk about what's going on. He said, you may need some correction at work but that's not really your problem.

He showed me the photos and told me that my optic nerves are swollen. There are a few different reasons this could be happening (tumor, viral meningitis etc), but he thinks the most likely culprit is psuedotumor cerebri, or idiopathic intercranial hypertension. Translation: too much fluid around the brain. It is linked to PCOS and hypothyroidism, and though it occurs in 1 in every 100,000 people, obese women under age 44 are 20x more likely to get it. He basically said that if that's what it is, I will have to work with him and a neurologist, start some medication that reduces the amount of spinal fluid I produce, and lose weight immediately. Since it was caught pretty early, if we treat it right away it is most likely there will not be permanent eye damage. In order to diagnose it, they need to do an MRI and a spinal tap.

Cue the big cry again on the way home from that appointment. I feel like we have had our share of health issues this year, and it feels overwhelming to have this going on. I admit there is a little bit of "Why me" going on, and a little bit of just being super frustrated that my body keeps failing me.  It was a relief in that I no longer feel like I am being a whiner or overreacting to my eye issues and headaches (which are only every 3 days or so now), but this seems like a big deal and it's just MORE medication, more doctors appointments, more tests. He recommended a book called The Schwarzbein Principle, which my Mom has been trying to get me to read for a few months, and ironically had just given me her copy of that very morning. He started talking about personal trainers and gyms, and I just can't. First, when in the world would I do that? And second, with what money? So I need to figure out a workout plan for at home, and I'm working on that right now.

My main goals diet wise right now are to stick to my points, and to cut out a lot of the processed foods I usually eat. I am not committing to NO processed foods because I feel like that's an unrealistic goal for me at this time, one step at a time. I don't want to bite off more than I can chew. Ha. I have cut back my diet soda consumption by a crazy amount - I was up to drinking probably 2-5 cans a day. I have only had 3 cans since last Wednesday. I am drinking a lot more water and drinking tea. I have been eating a lot more fruit. I went out to dinner last night and ordered a chicken burger without the bun and ate that and some fries.

AND, it looks like it's paying off so far. I am still + lbs for this round, but I lost 2.6 pounds this week. I didn't go over my points, in fact, I didn't use all of my weekly points. I am really going to try not to count on those except if I have something special going on and to use them for that. There is a candy basket on my desk at work and I have been very good about not eating much of it. I can make a mini Baby Ruth last four bites. I didn't have alcohol on our last date night because I didn't want to use up the points. I feel like I'm doing really well and if I can start getting exercise in at least 4-5 days a week I might actually have a chance of reaching that birthday goal up there.

 I had my MRI yesterday morning and found it completely bizarre. Despite a friend's warning that the machine would be very tight (it was), I found it weirdly relaxing and actually fell asleep for a moment in the middle of it. It's super loud, but somehow rhythmic. I am hoping to hear from my eye doctor today about the results of the MRI and vision field testing I had done Saturday, and find out what the next step is. I am not looking forward at all to the spinal tap (to test my spinal fluid and measure the pressure in my head). It sounds horrible. This is just one thing going on in my life right now, and I have other things I'd like to share, but I just haven't had time to sit down and write lately. Hopefully soon. I am a little bit focused on this right now because I feel anxious to get a firm diagnosis and start trying to make it better. In the meantime, I'm going to go eat a piece of dark chocolate.

Starting Weight 1 (Feb 2009):  267 lbs
Starting Weight 2 (Dec 2011):  249.8 lbs
Starting Weight 3 (Feb 2013):  232.4 lbs
Starting BMI:  41.8

Weight Lost:  33.6 lbs
Goal Weight: 160 lbs
Goal BMI:  25.1

Old Goal 1: 237.8 (5%) - Met 1/24/12
Old Goal 2: 225.8 (10%) - Met 4/10/12
Old Goal 3:  217 (50 pounds down) - Met 8/7/12
Old Goal 4: 213.5 (50% of final goal) - Met 9/25/12

Short Term Goal 1:  222.4 (10 pounds down this round)
Short Term Goal 2: 217 (50 pounds down [again...])
Short Term Goal 3:  207 (60 pounds down)
Short Term Goal 4: 199.9 (under 200 for the first time in 7+ years)
Short Term Goal 5: 192 (75 pounds down)
Short Term Goal 6: 189 (25% &  no longer "obese")

Long Term Goal: 160 lbs
Total to Lose:  107 lbs
To Go: 73.4 lbs