"It is health that is real wealth and not pieces of gold and silver."

"It is health that is real wealth and not pieces of gold and silver."

~Mohandas K Gandhi

Thursday, September 29, 2011

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.)

Thursday, September 22, 2011

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.

Saturday, September 17, 2011

Well, hello there, new school year.

Last Friday, the first Friday of the new school year, I got a phone call from my son's daycare.  His right eye looked red/pink.  Awesome.  Fortunately, this was the end of the school day, so I went and picked him up.  I looked at his eye. 

After 18 years working in education, if there's one thing I pride myself on being able to diagnose on sight, it's pink eye.  This did not look like pink eye to me.  For one thing, the skin around it was red an swollen, too, in a way I have never seen with pink eye.

Second fortunate thing: it was Friday.  I had the luxury to say to myself and my husband, "I do not think this is pink eye.  We'll see how it looks in the morning, and if it doesn't look better, I'll think about bringing him to the doctor."  His pediatricians, bless their hearts, have Saturday morning hours.

Saturday morning, the eye looked better.  Not all better, mind you, but the kid was sneezing quite a lot, so I began giving him some Claritin in the morning.  I did call the doctor and describe the eye, too.  Bless them- they called in a prescription for eye drops, without having me bring him in.  She did say it sounded to her more like allergies, though, and to get him some OTC eyedrops. 

So, now it's a week later.  I gave him Claritin every morning before school, which seemed to help a bit, but by Thursday, the cause for the red glassiness became apparent:

The kid has the first cold of the school year.

I am quite fortunate in that my son is one of those types who soldier on through pretty much anything.  He's running around and playing normally, but sleeping quite a bit more at night.  He's also sneezing and coughing and blowing his nose quite a lot.

It's very hard for me, sometimes, to be able to do all the mommy things, like cuddle my kid when he's sick, and not sit there tense, wondering which sneeze is going to be the one that sends the virus into my system.  He, you see, has a normal immune system; we had him tested when he was just over a year old.  He will be fine, with very little medical intervention, by this time next week.  If my husband gets sick from this, it will take him less than a week to be fine. 

I, however, am the one my son wants to snuggle with when he's sick, and who he bestows big wet sloppy kisses on even more when he's sick.  There's no avoiding any of it, really, and it's very hard for me to not be resentful of both of my men during these situations. 

This week is a busy week, too.  His birthday is Tuesday, and we are having a small family party next Saturday.  He has OT Monday, and his yearly physical Wednesday.  I have to bake cupcakes tomorrow because I won't have time Monday.

I just hope the cold stays away from me until after next Saturday.  And that it doesn't become so bad I have to call in sick during freaking September!

Monday, September 5, 2011

New school year

The beginning of a new school year brings trepidation to not only students, but staff as well.  (I say "staff" and not "teachers" because, well, I am not a teacher.)  What students will I have this year?  What classes?  Will I be working with teachers I like and respect?  Will I have a hard time understanding the subject matter?  Will the teacher like and respect me?  Will the teachers think I'm an idiot if I ask questions about what they're teaching?

I have additional concerns when a new school year begins.  I've been healthy all summer, even on vacation, when I got very little sleep.  How long will it be before I get my first illness of the school year?  When will the first time I have to call in sick be?  Maybe this will be the year I make it to Christmas without calling in sick once!  (Yeah, right.  Actually, this did happen one year.  One, out of 17.)  What knds of infections will the kids bring back from their various travels?  Please, God, let them not have travelled anywhere that had a measles or mumps epidemic and be unvaccinated, or I am SCREWED!

One year, we got a memo from the nurse that a student had Fifth's Disease and if you were pregnant to please see her.  I freaked out, since I had never heard of Fifth's Disease, and went to see her.  No, I wasn't pregnant at the time, but as someone who is immunocompromised, any mention of out-of-the-ordinary infections freak me out.  Fifth's Disease, as it turns out, is no big deal, generally, but if a pregnant woman gets it, it can lead to birth defects.  Awesome.

So, here I am, 12 hours away from a new school year.  My son enters kindergarten this year.  He'll be at the same place he's always gone to daycare, so it's not going to be that huge a change for him.  I, however, will be in three different schools this year- the high school, middle school, and the vo-tech school.  Three schools, three different places to pick up infections. 

These are the things that go through your mind before a new school year begins, and you have a Primary Imuune Deficiency.