Back in school

I am almost at the end of my second week of school, and have not been absent yet. 

I wonder how long that'll last.  Last year I really wanted to make at least the first month without an absence, and that didn't work out very well.  Last year was one of the worst years I have had in a very long time, which sucked.

My son is in a new school this year.  I wonder how many new germs, and what kinds of germs, he'll bring home.

My husband has a new job that requires a lot of travel. I wonder how my body will handle the stress of being a single parent (and working full-time) at regular intervals this year.

It's almost depressing, the way I see a new school year.  I am glad to be back, doing something productive, and talking to other grownups. However, while everyone else in the world looks at a new school year as a fresh start, a new beginning, I can't help but think of how it will affect my health.

I am the sick one. But at least I have this.

On Monday morning, I went to the Gynecologist for my yearly checkup.  Everything is fine.  I walked away with a scrip for a mammogram for the first time.  (The fun of turning forty, I guess!)

That evening, my husband commented, "You're in a remarkably good mood today, considering what doctor you had to go see today."  He was right- I was downright chipper for the rest of the day.  I thought it over, and I think I figured out why.

You see, for the average person, going to the doctor really isn't a big thing.  They go, get a scrip for whatever, and then they don't go again for months.  or, they go for a yearly checkup, and leave with the words, "Okay, everything looks fine; see you in a year" ringing in their ears.

This never happens to me.  I seldom go for a yearly checkup, because I am at the doctor all the damn time, anyway, so if some kind of test is needed, the doctor tells me while I am there for a sinus infection or bronchitis or whatever.  I certainly never leave the doctor feeling footloose and fancy free, knowing that I am healthy and do not need to darken the doorstep of that doctor for quite a long time again.

However, the one system in my body that has always worked like it's supposed to is my reproductive system.  I've never had any major problems with it, and never even had problems conceiving precisely when I wanted to and then carrying my son.  (I think I've written before how lousy I felt during the pregnancy, but that had nothing to do with how my reproductive system was working.)

I've always felt a bit odd about that.  I know plenty of women who couldn't conceive for various reasons, or who miscarried repeatedly, or who came thisclose to death during their pregnancies (See my friend Molly's excellent blog Knocked Up Knocked Over at  http://knockedupknockedover.wordpress.com/ for a description of the effects of  Hyperemesis Gravidarum.).

I'm used to being the sick one.  I hate it, but I'm used to it.  As I discovered this spring, when my five-year-old son suddenly came down with a raging case of pneumonia that neccessitated a trip via ambulance to the ER at 1am, I am FAR more comfortable with ME being the patient. 

I feel badly for these women I know.  I'm the sick one.  I should be the one who has problems.  I'm used to it.  For the most part, these are otherwise healthy women who were completely shocked by reproductive issues they had.  I, however, assumed from the get-go that I would have problems, because I am used to being the sick one.  I'm sure my husband thought I was a tiny bit crazed when, at the time, I explained to him precisely how many months we'd go with nothing happening before I would demand to see an infertility specialist, because, "...I don't want to waste time just waiting to see if anything happens, when, since it's me, nothing will happen on its own." 

Thankfully, my son surprised me by becoming a presence easily and quickly, and each month of pregnancy passed in textbook fashion. Once he was born, aside from him having Sensory Processing Disorder and a couple of allergies (and the aforementioned pneumonia), his health has been almost boringly normal, for which I am also thankful.  He seems to have inherited my husband's freakishly strong immune system, rather than mine.

But, looking at him, I am still surprised by all this.  I mean, I am the sick one.  I always have problems.

Except for this one area, and I will be forever grateful for that.

Allergy season

So, it's allergy season.  My environmental allergies used to be a lot worse than they are now.  However, I had a baby five and a half years ago.  According to my (and my son's) allergist, in some women, when they get pregnant, their allergy status (aka, what they are allergic to and how badly they react) changes, and sometimes the change is permanent.  Some women get worse, but some women actually get better!  Thanks, Frank! ;) 

Basically, there are a lot of trees that I was badly allergic to before, but am not so bad anymore.  There were about fifteen on the list, most of which I had no clue what they looked like, so I looked them up.  It turns out, I am allergic to pretty, flowery trees.  Some of them ahve dropped off my list entirely.

This allergy season started early, because of our mild winter, and it is going to be long.  This means my allergies instead of waiting until late April or early May like normal, started in late March to early April this year.  So I've had symptoms for almost four weeks now.  My son has, too, and was suffering badly for several days, until we got aggressive with the medications we have him on, and he seems to be okay for now. 

With me, there is a whole other dimension to worry about.  because I am susceptible to respiratory infections, I can go right from being not sick to being quite sick.  Yes, allergies can actually cause a raging bronchitis, withhout another underlying infection.  Awesome.

I first felt it coming on Friday last week, but went to work and muddled through the weekend, feeling like hell.  (I had an event at school I was interpreting Friday night, and a job Saturday morning and another Sunday morning.  I did not have time to go to the doctor.)  Monday afternoon, I went to the doctor after school.  Dr H walked in and greeted me, and didn't bat an eyelash when I informed him I had bronchitis brought on by allergies.  He's quite used to my medical specialness by now.  One antibiotic and Prednisone scrip later, as well as a scrip for codeine cough syrup, I was out the door.

Codeine and I have a love-hate relationship.  Like most people, codeine is awesome for stopping the cough for me.  A doctor explained to me somewhere along the way it's actually a chemical reaction in the brain: codeine literally stops the coughing mechanism.  However, codeine does not put me to sleep like it does for most people.  Codeine actually revs me up.  Sure, I am no longer coughing, but I am practically twitching as I lie in bed staring up at the ceiling, with the strangest, most disjointed thoughts running through my head.  I have no way of knowing for sure, but I imagine it's kind of how a manic episode feels for someone who is bipolar.

So, my nebulizer wasn't stopping the cough, nothing was, and I was just so damn tired, so the last few nights, I have taken the codeine cough syrup, with the result being I have been awake most of the last few nights.  It completely sucks, and on top of my insomnia that I battle regularly, anyway, it is enough to make one crave death, just to be able to sleep.  I probably should have called in sick to work today, I was so tired.  I really should not have been out driving.  Once I picked up my son and came home, and got his homework on its way, I laid down on the couch and actually dozed off for a bit.  I am still exhausted, but got enough of a second wind to make it through the evening.  I am going to bed very soon.  I really hope I sleep tonight.

I'm back!

This winter was...well, different, and yet the same, for me.  Here in the Northeast, aside from the October freak snowstorm, the winter was very mild.  It was so mild, in fact, we barely got anymore snow, and as such, the school district I work in did not use one snow day, so we got one day added onto our spring break!  It was nice not feeling oppressed by tons of snow all winter long.

I was sick just as often, though, and, at times, it seemed like more often than usual.  IT was only after practically crying in Dr D's office in late February, though, that he commented that there had been some studies about IVIG recently, and, "Perhaps we, as doctors, have been too conservative with teh amount we've been prescribing.  Let's try upping the amount of IVIG you're getting, and see if that helps."  Two months later, and I do feel like it's helping- I went almost six solid weeks without an infection!

I have an URI now, though, that's become bronchitis.  Yay.  This one came on from, believe it or not, allergies.  Yup, springtime, things are blooming, pollen's in the air...and all the world is miserable.  My son, who is pretty healthy, is miserable, too.  Anyway, it was the allergies, combined with a supply shortage that caused my latest treatment to be delayed a week, that brought this infection on.  (Supply shortage?  Really?  You know I get this stuff every month.  Why can you people not think to count and order enough in advance, to be delivered when it needs to be?  I'm afraid I took my anger at my situation out on my pharmacist at the infusion company, who really is a sweet woman, but really, I am just a name and number to her, she has no clue how a week's delay affects my health.) 

It angers me and frustrates me that, at the end of the day, I am so wiped out sometimes just from breathing all day that I haven't enough energy to deal with or play with my son, or enjoy a conversation with my husband.  I let him do most of the talking when I am sick, simply because if I talk too much, I cough, and then the conversation is over.  I'd love it if he learned to sign, so this would not be an issue! ;) I had a really bad day last week, and I emailed my husband from work: "Today is really a day I am getting through just by sheer will. I can barely breathe, even with all the drugs I have in my system, and it's wiping me out."  I'm not sure those who have not experienced it can really understand how difficult breathing and doing other things at the same time can be.

Been on hiatus

So...it's been a while. 

Life has been incredibly busy the past couple of months.  I am working full time, my son has occupational therapy Tuesdays after school, I have regular appointments Thursdays after school, and Wednesdays after school, I have been teaching a sign language class.  Busy is good, but people like me need to remember to take care of ourselves, too, and that we get run down far more easily than others do, and when we do, shit happens.

On October 29th, the northeastern US was hit by a freak snowstorm.  We live in northwestern New Jersey, and got almost 16 inches of snow on our deck.  I do not remember the last time we had this much snow before Thanksgiving, much less before Halloween. 

The problem with snow this early is that, up until that point (and, actually, since then), it had been a warm fall, so the trees still had lots of leaves on them.  The snow clung to leaves, weighing branches down really seriously a lot, resulting in broken branches of epic proportions.  We had a ton all over our yard.  My husband is six feet, three inches tall, and he couldn't even move most of what ended up in our yard; he had to saw them into pieces before they could be moved.  (Some of these pieces of tree were exactly that- we have two trees that simply snapped in half!)

So, what happens when you get the top halves of trees plummeting down on power lines?  yep, massive outages, of epic proportions.  We woke that Monday morning (happy Halloween!) to no power.  We have a well, so no power means no water.  No power also meant no heat.  To make a long story short, I got a room at a local hotel for me and my son, and my husband stayed here all week, in the cold.  Both of us were kind of worried about people seeing entire neighborhoods without power and looting the place, and didn't want to leave the house vacant.  (Before I forget, the Hilton Garden Inn at Rockaway staff was AWESOME to us.  When we checked in on Halloween, pretty much anyone who walked by us kept offering candy to my five-year-old son, who was standing there looking forlorn in his Jango Fett costume.  They smiled at us all week and asked him how he was doing, too.) 

My school was closed for three days that week.  My son's daycare, thankfully, was open, so he had a warm place to hang out all day.  Our power did not come back on until Friday afternoon; thanks to Detroit Electric for being the ones to turn our power back on!

So, that Thursday, when my school re-opened, was I there?  No, I was sick.  It was partially a cold, which I'm sure I could have fought off had I slept in my own bed all week, but it was also partially mental and physical exhaustion.  Truthfully, I grow tired just thinking about that week.  Worst Halloween ever, for starters- you try telling a five-year-old there will be no trick or treating, because your town has cancelled it.  (I can't blame them for that- the town was still under more than a foot of snow, not a whole lot of plowing had been done, and there's the whole downed power lines thing.)  I ended up with a major sinus infection and had to go on an antibiotic.

I got another sinus infection about three weeks ago, and went on something for that, which I finished.  Then, a week ago Saturday, I started to get sick again.  I got through that whole week, Thanksgiving week, on pure will.  I did NOT want to have to call in sick on a two and a half day week, and we were hosting Thanksgiving- a small group this year, but still.  Black Friday, I went to the doctor- yep, bronchtis.  He also sent me for a chest x-ray to rule out pneumonia.  Awesome.

(I've been shown a lot of my chest x-rays.  I got a brief glimpse of this one on a computer screen.  I do not think I had pneumonia; I think it was, as the doctor said he thought it probably was, just that I was wheezing so badly, it sounded worse than it was.  Besides, I never got a phone call from him, and he would have called me if it was pneumonia.)

So, that was my Turkey Day weekend- felt very run-down, and pretty much rested most of the weekend.  I now have three and a half weeks before Christmas break.  I've already used up for sick days- I sure hope I can get through the next three weeks without having to use another one...and that I am not sick for Christmas!

How to tell people?

One of the hard things about having what I have is telling people in real life.  For the most part, as soon as people hear the words "immune deficiency" they think of HIV/AIDS.  I try to make it very clear that what I have is nothing like AIDS.  Well, it is, in that they are both immune disorders, but that's where the similarity ends. 

One of my deaf students asked me yesterday why I get sick a lot, and cough a lot.  I explained that I cough a lot because I have asthma.  (This is true, as it's one of the reasons I cough a lot.  Also, asthma is something the kids can relate to- even if a student doesn't have asthma themselves, they've seen someone use an inhaler.)  I also told her I have other things wrong with my lungs, but, "...the details are too long and boring."  She accepted that.  I like to think it's because the kids have come to know by now that, if they need to know something, I'll tell them.  I also told her I get sick a lot because, "My body doesn't work right.  I can't fight off infections as well as normal people can.  It's a problem with my DNA, and I am not contagious."  She asked a few more questions, but overall, that explanation seemed enough for her.

Most of my coworkers in my department know what my story is.  I felt it only right, since they have to cover for me when I am sick.  I don't like using it as an excuse, though, which is why it took me a while to feel comfortable talking about it with them; I didn't want it to be like hey, I have an excuse for calling in sick a lot. 

I suppose with this blog, a lot more people know now, since I have a few coworkers as Friends on Facebook.  It's easier telling people through this medium, instead of in person.  I don't want pity, or sympathy, and it's easier not seeing the look of, "Wow, she's got it rough!" look on someone's face.

For those of you who have "hidden" health issues, and are greeted with, "Wow, you don't look sick!", how do you explain things to people?  What's the most out there comment that you've gotten in response?  (I was told, many years ago, that if I was that sick, I should be in a hospital bubble, and not out and about.  The person who said this shall remain nameless, and they are not someone I associate with anymore.)

Well, that didn't take long.

I am home sick today, for the second day in a row.  Yes, my son gave me Cootie Virus of Death.  He's recovering nicely, but I feel like holy hell.

I called in sick yesterday, and spent the day quietly, on my couch, mostly.  I also started taking the antibiotic my awesome doctor gave me to bring to Disney, because I could feel my sinuses starting to hurt, badly, and that's usually a pretty good sign it's time.  I went to bed early, planning on drugging myself into sleep, and going to school today.

I tossed and turned most of the night, but tried, anyway.  I was out of breath, and blazing hot, so I went to the nurse during first period, when I have off, and asked her to check my temperature.  My normal resting temp is 97.1, and I do not often get fevers, so imagine my surprise when she showed me the thermometer: 100.1!  "You're sick.  Go home, now," she told me.  "The rule is, anyone with a fever over 100 cannot stay in school."  Um, okay.  So, I told my boss, apologizing profusely, and came home.

So, here I am, third week of the school year, already having used two sick days.  Terrific.  This does not bode well for this year.

However, the good news: I have a fever, which means my body is actually trying to fight off this infection.  So, um, yay?

This would all be much simpler if I worked a job in which I could work from home sometimes.  I then wouldn't have to call in sick nearly as much, because there are a lot of times I call in sick because I am coughing too much and would disrupt class or something, but am not too sick to be on a computer.