"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, December 1, 2011

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!

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.

Wednesday, August 31, 2011

Disney World!

Well, we're back.  Overall it was a good trip, except for a little thing named Irene that came screaming up the coast.  We were originally scheduled to fly home into Newark Airport Sunday August 28th.  On Thursday the 25th, we decided to stay until Monday.  We extended our stay in our hotel room (Thank you, Animal Kingdom Lodge, for being so flexible!) and changed our flight reservation to Monday 8am. 

Then, Saturday afternoon, my husband got an email from JetBlue- flights into Newark were cancelled Monday as well.  After working the phones and the Internet for over an hour, he and I came to a most sucky conclusion: Planes were not flying.  Trains were not running.  We had only one choice- to rent a car and drive 20 hours home.  So, we left Sunday shortly after noon.  We got as far as my cousin's house in Charlotte, NC, crashed there, and got back on the road Monday morning before 8am.  We pulled into our driveway close to 7pm Monday night.

So, the FastPass: It actually isn't technically a FastPass.  It's a pass to get some accomodations, like, in my case, waiting inside, in air conditioning, instead of in the stifling heat.  A bit disappointing, because I guess I misunderstood what my doctor was telling me, but it was still nice to have, just in case.  We ended up not using it at all.  The lines, overall, were not terrible, and the rides that had really bad lines, we got the more traditional Fast Pass for. 

My throat is very hoarse right now.  I'm not sure if it's from allergens or from zipping in and out of AC.  It's not from illness, though- I can tell.  I'll just have to live with the hoarseness until my throat decides to clear up.  Frustrating and annoying, to be sure.  Otherwise, we all came through our vacation unscathed.

Tuesday, August 16, 2011

IVIG brain

I had IVIG today.  I usually have IVIG brain fuzziness for about 12 hours afterwards, so if I make a lot of grammatical mistakes or spelling errors in this post, my apologies.
It's not like being high or anything.  Parents of newborns (or children who were once newborns) will be able to relate- it's like the brain fuzziness you get from that fatigue, except minus the bone-crunching fatigue.  There is some fatigue that does go with it, though.

It's kind of interesting when I have to work immediately after, or the next morning when I have it in the evening- for the first few hours of work in the morning, I feel a bit out of things. 

When I have to care for my son immediately after, or drive somewhere, or bring him to Occupational Therapy (OT) for his Sensory Processing Disorder (SPD), it's not so interesting.  Sometimes with the fuzziness comes irritability, and that's not a good thing to have when caring for a four-year-old who LOVES to talk, and HATES certain parts of OT.  Today, at one point during OT, he was going into a meltdown, and I was thisclose to actually leaving the room, I was so annoyed with him.  Oh, and I yelled at him in the car on the way home- that one was for talking too much.  He was very upset by that, and was positively silent the rest of the car ride home.  I apologized to him later, and explained to him what happened and why I yelled.

I don't like yelling at him.  I don't do it often, which is good, but whenever I do, and he bursts into tears immediately, I feel like a total schmuck.  I still feel like a total schmuck, and that was four hours ago. 

Just one more thing to thank my malfunctioning immune system for.

Sunday, August 14, 2011

A bit disjointed

My mom is in the hospital again, with pneumonia, again.  Mom has ALS, better known as Lou Gehrig's Disease.  It causes the nerves that serve the voluntary muscles in the body to atrophy and stop working.  Mom was diagnosed seven years ago. 

My mother is and always has been the strongest person I know.  Nothing has ever been able to slow her down- sick kid, working, serving as a volunteer on our local first aid squad, divorcing an alcoholic husband, and raising three kids virtually singlehandedly after that. 

I always say that my mother is the reason I have not let my health problems stop me.  When I was growing up, I did not know I was sick.  Everything that happened to me was treated very matter-of-factly, like it was no big deal.  I coughed a lot?  I was sick?  Whatever.  Do your homework.  Wash the dishes.  Fold the laundry.  I resented it at the time, as any red-blooded American teenager would, but her toughness made me who and what I am today. 

I have plenty of experience as a patient, but very little visiting other people in hospitals, and therefore am somewhat awkward at making small talk or helping out with things while the person is in. (Of all people, you'd think I'd be at ease with hospitals, wouldn't you?)  I either try to do too much, or back off and do almost nothing.  With my mother, I have a tendency to hover and try to do too much.  (I suspect there's a part of me that wants to pay her back for everything she did for me when I was a kid.  Even though as a mother myself, I now understand that, yeah, all that is work, but you don't expect to ever get paid back- you do it because of the love you have for the child.)

I met Mom at the ER Tuesday evening; she went via ambulance from her assisted living facility.  I stayed by her side until just after 11pm, after she was settled into her room.  I went and visited her the next day for a few hours, and the next as well, thankful for once that I work in education and have summers off.  She'll be discharged tomorrow, and my sister is bringing her home.  I may go see her later in the afternoon.  I can't go Tuesday, because I have IVIG and my son has OT. 

For those of you who also have a lot of experience as a patient- do you feel this awkward when visitng friends or family that are sick, whether in hospital or at home?

Friday, August 5, 2011

Fast Pass update

Wow, I got a lot of comments on this issue, both here and on my Facebook page.  Overwhelmingly, the comments all pretty much said, "DO IT!"

The quotes that really stood out for me follow:

"This pass is a prophylactic measure.You're not that bad off now, but you could be if you stand in the heat and humidity waiting in line."

Very true.  I have been known at certain times in the past to go within 48 hours from being healthy (for me, anyway) to at the doctor's with pneumonia.

"Your doctor proactively gave it to you and said he wanted you to use it for your health. I say use it! After all, you could 'suck it up' and brave the lines and maybe even feel okay that day, but it will chip away at your health and you'll need to recover!"

Also true.  Even if I don't end up sick, I could end up exhausted, and unable to have fun with my family the next day.

"If you're anything like me you downplay how much your health issues affect you (not that I have huge health issues, but you know...when I'm sick). You and the family will have much more fun if you can get more enjoyment into the times you're out in the humidity. And Florida humidity is no joke."

This is also true, not just of me, but I think of most American mothers now.  We have so many choices, and have been told we can have it all, and feel like we should have it all, so that we give to everyone and very seldom take rest/enjoyment purely for our own rest/enjoyment.  I know so many women, both in my personal life and my work life, who have said to me variations of, "I never use my sick days, because I need to save them in case my kids are sick."  (Inevitably, they say this while they are breathing cooties into my face, cooties which later cause me to be down for the count, but that's a whole 'nother rant entirely.)  This, I feel, is an indictment of the current system, both employment and health care.  People feel like they can't take sick days they actually are granted by their employers because it looks bad or looks weak.

I do not have the luxury of trying to save my sick days for when my son is sick.  The days I call in sick, I am either calling in dead, practically, or I am coughing so incredibly much that...come on, would you want to try and teach over that sound for 42 minutes?  Or learn, listening to that?  I didn't think so. 

Anyway, I showed the note to my husband last night when he got home from work, and told him the story about my doctor's appointment.  His first comment, right off the bat, was, "We're not using that." 

Yes, ladies and gentlemen, I married a man just like me.  ;)

I had let all you fine people convince me by that point that I am not mooching off the system if I use this pass, so I said, "Your wife has chronic, serious lung issues, your son has Sensory Processing Disorder, and your mother has mobility issues.  Why wouldn't we use this?"  He had no answer for that.

We pretty much decided if an attraction has a short wait, we won't use it, but if there's a long wait, we will. 

It's been a hard decision for me to make.  My mother raised me to be strong and independent.  It sounds strange to say, but when I was growing up, I did not know I was sick.  I didn't know I was different.  All the doctor visits, sick days, etc., felt normal because to me they were normal.  Most people in my extended family never seemed to notice how much I coughed, or how often I got sick.  I had a conversation recently with a cousin who is almost the exact same age as me, and it surprised me when she said, "I had no idea you were that bad off.  I knew you got sick a lot, but I never thought about why that was." 

Using something like this feels like it goes against who I was brought up to be.  You don't look for help from others; you help yourself.  This, obviously, is something I need to work on, for myself, because otherwise I'm going to have a really hard time in 30 years (if I am fortunate enough to make it that long) and I need others to help me with anything!

Thursday, August 4, 2011

Fast Pass?

I had a cold starting about a month or so ago.  I managed to soldier through and get rid of the cold without it becoming anything more severe- yay!  However, I am still coughing and wheezing a great deal, mostly at night.  I wake up needing to use my rescue inhaler, which is out of the norm for me.  So, today, I threw in the towel and went to my GP.  He's very familiar with my medical history, and knows that I'm a tiny bit more informed than his average patient, and therefore really listens to me.  This, I have found, is a rare commodity, especially in GPs.  They are so rushed and overbooked these days, it's hard to get them to stop and listen sometimes.

So, today, I outlined for Dr H what's been going on, ending with, "I'm honestly not sure if I have a little bronchitis, and need an antibiotic, or if I just need a week of prednisone to get the asthma sorted out."  After examining me, he agreed with what I was leaning towards- that I just need some prednisone. 

While we were discussing things, I mentioned we are going to Disney in a few weeks, and asked if he would be willing to write me out a scrip for an antibiotic to bring along, just in case.  Sure, no problem, and, "I'm going to totally make your vacation right here."  He wrote for a couple of minutes on his prescription pad; I couldn't see exactly what he was writing, but it was a lot more writing than you usually see on a prescription.  He then handed it to me.  He gave me a Medical Fast Pass!  "I don't want you having to stand out in the heat and humidity waiting for long periods, with your lungs," he said.

Basically, when I arrive at each Disney Park, I bring this paper to the Fast Pass office.  The Fast Pass enables me and my group to walk up to any ride and bypass the line.  It's not something that occured to me to ask any doctor about, because, really, when I go somewhere, if I'm tired or not feeling well, I find air conditioning, go in, and sit for a while.  But between my lungs and immune system and my son's Sensory processing Disorder, it might not be a bad thing to have, just in case.

I'm of two minds on this.  Part of me thinks, "I'm really not that bad off.  This is kind of cheating."  However, the other part of me is thinking that, with the crappy health deal Mother Nature gave me, I may as well take advantage of it once in a while when it nets me something good.

So, I don't know.  I'll bring it, certainly, and get the Fast Pass, probably.  But I doubt I'll use it for everything we do there.

What would you do?  Would you use the Medical Fast Pass?

Thursday, July 7, 2011

Ahh, summer

There's not a great deal for me to write about during summer.  I'm not around kids much, and generally speaking people are sick less often duiring summer, anyway, so I'm usually pretty healthy.  I am able to cut back on some of the medications I take during the school year, too.  (That is with my doctors' blessings, by the way.)  Right now I am only using Symbicort and saline nasal spray. 

It's a nice feeling, having lungs that are clear and a nose that I can actually breathe through.

The steroid seems to have worked- I never got a headache from the infusion. 

Thursday, June 23, 2011


I went to see Dr. D, the one who oversees my IVIG, the other day about my infusion headaches. They've been pretty bad- I've had to take several days off school this year because of them.  Basically, infusion headaches occur because of the same reason as organ rejection happens when you get a transplanted organ- the IVIG is not my "stuff", so my body is trying to reject it.  It's not uncommon for IVIG patients to get infusion headaches, and it apparently is also not uncommon for a patient to have one regmen to keep them away work for a while and then stop workng.

This is what's happened to me right now.  The meds I was using for a couple of years to keep headaches away are not working for me anymore.  Instead of taking an oral steroid before my infusion each month, now J, my nurse, has to give me 10mls of an IV steroid before my infusion starts. 

I freaking hate steroids.  I mean, they're awesome, because they help a variety of woes.  There are a lot of winters I'd never make it through without Prednisone helping me to breathe.  But I hate the way they make me feel.  I get overheated too easily, and my cheeks are flushed for up to a good 24 hours after I'm done with them.  I have  wake up and pee at night more often, sometimes two or three times a night.  And I just feel weird.  I can't explain it. 

The IV from the other day made me way overheated.  That was Tuesday, and it's now Thursday, and I'm jut now starting to cool off.  My dermatologist yesterday (I go once yearly for a full-body check- with pale, pale skin like mine, one can never be too cautious, I think.) even commented on my rosy cheeks.  "Having a rosacea flare-up?" he asked.  No, I told him, and explained. 

Anyway, I am now 48 hours post infusion, and so far, no headache, so it looks like the IV steroid is going to work for now.  I wonder how long this will last.

Tuesday, March 15, 2011

Role Reversal

My husband is sick.  It could just be a bad cold, maybe a mild flu, neither one of us is sure.  But he stayed home from work today because he felt so lousy, and he simply does not do that.  I can't remember the last time he called in sick, actually.  If I didn't love him so much, his healthiness would be seriously annoying. ;) 

Anyway, when he's sick, he just wants to be left alone.  Don't try to talk to him or feed him, just leave him alone.  So, when he came home from work early last night and came upstairs right away and curled up in bed, my son and I did just that.  By 8pm, I was the only one awake in the house, unless you count the cats.  It was kind of a surreal feeling.  I'm not used to being the healthy one taking care of everything!

The other interesting point from today was when he and I chatted briefly when I got home.  He's still not feeling great this evening.  He commented something about how he's "not good at pushing through illness" and I seem to, no matter how lousy I feel, be able to at least do a few things.  I kind of shrugged and said the first thing that popped into my head: "Well...I kind of have to be."  I guess, when one is sick a lot, one gets used to it to a certain degree, and learns how to push through certain aspects of it.  He looked kind of awed that I can keep upright when I feel really bad.  But, really, if I couldn't do that, to a certain degree, I'd be an invalid for six months out of each year. 

Sunday, March 13, 2011

On the mend

The cough is breaking up, finally.  I can sleep without having to resort to Tylenol PM.  (Well, I should clarify that: I can sleep as much as I usually sleep- I have bad insomnia, and have for years.)  Daylight Savings Time began here this weekend, so even though it's after 11pm, my body thinks it's only after ten pm, and I am therefore not tired.  Ugh.  I'm pretty sure the prednisone is not helping this situation, either- it usually does cause sleep problems for me. 

My son's cough is starting to break up, too.  We don't need to give him albuterol every three to four hours anymore.  He is still coughing in his sleep, but it doesn't seem to be waking him.  It's hard to tell sometimes, though- he talks in his sleep on a regular basis.  I heard him talking before, and I thought I even heard him call my name, but when I stood at his bedroom door and listened, I heard him babbling some kind of gibberish.  Gibberish is a good indication he's still asleep.  I can't wait for when he's a teenager, to hear what kinds of things he talks about. 

It's been warm enough this weekend to have windows open.  It feels good to have the breeze blowing through, like spring is really on the way.  All the snow is gone from our property, too.  And I noticed today- my hyacinths are starting to come up!  It seems I have survived another long winter.

Thursday, March 10, 2011

Dr D is awesome.

So, last week I had my appointment with Dr D.  I brought my datebook with me.  I keep a log of sick days, IVIG dates, and antibiotic usage in there.  When he came in and asked me how I was doing, I greeted him with, "This winter has SUCKED!!!"  He chuckled and asked what I meant, so I opened the date book to September and began giving the summary: "Okay, IVIG here, three weeks later, sick enough to go on an antibiotic- Avelox-  Three weeks later, IVIG, day after treatment, needed to start on an antibiotic..." 

The pattern that emerged was that a week to ten days after finishing an antibiotic, I was sick enough to need a new one.  Dr D agrees with my thought- namely, I've been colonized by Some Kinda Bug, and was never on the right antibiotic or on long enough to kill it.  So he put me on Suprax, one I'd never heard of before, for 28 days.  It's an older drug, he said, that, "...went away for a while and is now starting to come back."  I have to call him in mid-April to report in.   Oh, and I'm to "...eat a lot of yogurt this month."  That part is no big deal- I usually eat a good amount of yogurt, anyway. 

So, now it's a week later.  Most of the crud has gone from me, except for a Godawful cough, worse than usual.  It's nonproductive and very wheezey.  I've been using my rescue inhaler every four hours around the clock, including at night.  Today I had to bring my son to the doctor (I think he and I ended up with the same bug), so I called Dr D's office to find out if he'd be willing to call in a scrip for prednisone to my local pharmacy, since I was just there last week.  The receptionist took down all the info, and called me back two hours later- no problem, it's already been called in.  Yay!  I love Dr D.  He's a great guy- he understands that I totally know what's going on in my body, and is willing to take my word about what I need right now.  Most doctors are not like that- most doctors would have insisted on me schleping in for another office visit.

Right now, my son and I are basically in the same boat- wiped out, even upon getting up in the morning, from this cough keeping us up much of the night.  (My poor husband looks a little frazzled, but is trying desparately to keep up a positive front.)  According to the pediatrician, the kid just has that respiratory crud that's going around like wildfire, and his lungs don't actually sound that bad to her, and the cough is improving slightly with each day, so continue to give him albuterol every four hours, or three if need be for the next couple of days, and give him a dose of Benadryl so he'll actually sleep tonight.  The last seems to actually be working- I put him to bed 40 minutes ago, and haven't heard a peep from him for at least 20 minutes.  Tonight, for the first time in days, when I gave him albuterol, the cough actually seemed to be loosening up a bit, too. 

I sure hope we both get the rest we need this weekend and are back in fighting shape by Monday.  I've used ten and a half sick days this school year, and it's only early March!! 

Monday, February 14, 2011

And now for something completely different...

I felt a sore throat coming on yesterday afternoon and felt crummy last night.  Early to bed, two Tylenol PMs to help me sleep.  I woke up...still feeling like garbage.  I took some Advil and went to school, and made it through the day.  I am starting to feel crummy again.  I'm hoping that going to bed early again will help, but am not holding my breath.  Today is Monday; this Thursday will be three weeks since my last infusion.  This Thursday is also the day (night) that my husband and I are going to see Meatloaf, with the tickets I got him for Christmas. 

So, to sum up, I am following the pattern I have established this winter.  In a way, this is good- more evidence for Dr D (when I see him in two weeks) to use when I ask him to bump me up to every three weeks for my infusions.

However, the timing could have been slightly better...I will be quite pissed if I am too sick to enjoy the concert Thursday...

Saturday, February 12, 2011

Telling people

I posted my blog on Facebook for the first time yesterday.  I hadn't done this before because I wasn't sure how others in my life would react- with pity?  Annoyance, at me being all "look at me with my weird illness"?  Indifferent? 

Response so far has been overwhelmingly positive, so thanks to everyone for their support. 

This has been easier than it usually is telling people about my health woes in real life.  Reactions tend to fall into the following categories:

1. Shock: "But you don't look sick!"

2. Nodding: "Oh, it's like AIDS, right?  How did you get it?"  (Which, as I have said before, it's really not.)

3. Confusion: "But...there's got to be some kind of medicine to make you better." 

4. Awe: "You are so strong.  I could never do what you do."

All are well-meaning, and I do appreciate the concern.  But I sometimes wish I had something common and quantifiable.  If a person is deaf, people get that, and you can even show them an audiogram to prove it.  If a person has Down Syndrome, you can see the genetic malfunction.  If a person is blind, or has hemophilia...you get the idea.  My problems are so far outside the normal experience of pretty much everyone that, when I do choose to "come out" about my health, I end up getting into a much longer explanation than I'd like.  (I experience the same thing with my son's Sensory Processing Disorder.)  I am also no longer surprised by the number of medical doctors who have never heard of any of this, and whom I've had to explain it all to.  (I'll have to blog sometime about how, when I was in college and went to Health Services for a sinus infection, they insisted on getting a chest x-ray from me.  They then looked at it and freaked, because they thought I had tuberculosis.  Yeah, that was fun.)  I'm not someone who really enjoys being the center of attention in real life, so having to explain the whole thing is way more attention than I usually want. 

If I had to name the thing that bothers me most about having a Primary Immune Deficiency and Bronchiectasis, it is this: being different.  Being sick a lot does suck as much as it sounds, and coming thisclose to dying was no picnic, but I seldom am able to just blend in with a crowd, and be like everyone else. 

Wednesday, February 9, 2011

Feeling better (Needle Phobes Should NOT Read)

I love my IVIG.  Seriously.  The morning after my infusion, I woke up, bounced out of bed, and was able to breathe.  I had a mild headache, and a spectacular bruise on my left arm from the IV, but I felt much better than I had in about two weeks.

My nurse, J, used to be an oncology nurse.  This means, in her words, "I can get an IV in anyone."  See, people who are on chemotherapy have to get a LOT of needle sticks.  This means their veins get very scarred.  Have you ever noticed how scar tissue is tougher than regular skin?  The veins do the exact same thing.  To avoid too much scarring in one spot, we rotate spots each month, and arms, where I get my IV.  This most recent (overdue) infusion, J chose a spot near the back of my wrist on my left arm.  (You know, the hairy side of the arm.)  For the first time in a long time, I actually yelled out, "OW!!!!" as she stuck the needle in...and watched the area swell up.  The discoloration came later.  The vein blew, in a quite spectacular way, releasing a lot of blood into my arm, enough to make the area swell up and, eventually, bruise almost black. 

J pulled the needle out and studied the arm.  "Wow, I haven't seen your veins do this in a LONG time," she commented.

"What?" I bit out.  I am not good with needles, at all, and whenever I get stuck for whatever reason, I sit with my head turned as far away from the arm as I can manage.  J frequently has to remind me to breathe while she's actually sticking me, too.  (I've never yet passed out, but there's a first time for everything, I suppose.) 

As she does sometimes, she said, "Look, check this out."

"No," I said.  Just looking at a needle stuck in, well, anything, makes me a little queasy.  Once it's in, everything is taped, and I'm hooked up to the pump that releases the IVIG into my veins, I'm fine.  Getting it in?   Not so much.  "Just tell me what it's doing."

"Well, you're what, nine, ten days overdue?"  At my nod, she said, "You're sick, totally run-down.  Your veins are, honestly, a mess as a result.  I haven't seen your veins be that hard to stick, and blow that easily, since the first few times I infused you."  Which, I should add, was about a month after I was hospitalized for five days because of double pneumonia and a staph infection. 

Awesome.  Up yours, Big Insurance Company.  Because of you, I had to get stuck more than once that day, because my veins were in uch bad shape, because I was in such bad shape. 

Just about two weeks later, the bruise is just barely visible- kind of a faint yellow color.  I wonder sometimes, as I go around with an occasional bruise from the infusions, what people who have no idea what a medical mess I am think about these bruises.

Tuesday, January 25, 2011

It only took a week...

...to sort out the insurance issue.  I spent so much time in the last week on the phone with Big Insurance Company, my doctor's office, and the infusion company.  I swear sometimes it is like another part-time job, just keeping on top of people and making sure they actually do their jobs.  Anyway, I get my next infusion Thursday evening.  The IVIG was delivered today.  I almost hugged the delivery guy from the infusion company. 

I am sick, too.  (I'd love to go to the offices of BIC and cough all over a whole bunch of people there right now!)  I came home from work early today.  I must have looked as good as I felt, because I had more than one coworker telling me that I should go home.  However, as I said to one, when she asked me why I was staying until after a couple of my classes were done, "If I go home any earlier, I have to take a whole sick day.  I am up, dressed, and have makeup on.  I am not being docked a full sick day."  I don't think I'm going to make it in tomorrow.  *sighs*  I think I'm going to the doctor in the morning.

In other news, my husband told me that he has to be out the door at 6:15am tomorrow for a big meeting about two hours south of us.  Which means that, even if I call in sick, I still have to make myself look vaguely presentable, because I need to bring my son to daycare/preschool.  Obviously I understand that hubby did not do this on purpose.  My timing, as always, is just spectacular. 

Tuesday, January 18, 2011

...And I have "excellent" insurance?

So, the IVIG I get every four weeks costs, according to the statement from my insurance company I got recently, just over $10,000 a month.  As I blogged a couple of weeks ago, I started getting it nearly four years ago, after I nearly died from a very serious infection.  I have a feeling that Dr D completely bitched out my insurance company for their previous refusals to pay for it (they basically said I wasn't sick enough to need it) and told them I was thinking of suing.  Dr D, like many doctors these days, might actually hate insurance companies more than the patients do. 

I received an EOB regarding my September infusion...in early December.  It said Big Insurance Company was not paying for it.  Huh?  I got one of these once before, and it turned out to be nothing, so I forgot about it.  Then I got one a week later regarding my October infusion.  Three days after that, another one, for the November infusion.  Okay, now I'm a little freaked.  I called Dr D's office.  F, the nurse who also handles all insurance-related things for my case, thought this was rather odd, and she called Big Insurance Company.  BIC told her that they couldn't authorize the IVIG, because I hadn't had any recent blood work.

I had bloodwork on August 30th.  The September infusion was about ten days after that. 

Basically, it boils down to this: they randomply decided they want me to have bloodwork more often from now on.  Of course, I only figured this out after calls from me and F to BIC.  They never bothered to tell me, or my doctor who oversees the infusions, that they want me to have bloodwork more often, when up until this point, they've only wanted it four times a year! 

So, the day before my December infusion, I went for bloodwork.  Problem solved, right?

My life should be so easy.

My next infusion is scheduled for tomorrow, which means the IVIG should have been delivered to me today.  It comes in an IV bag, in a cooler.  As soon as I get it, I have to put it in the fridge.  The infusion company, who sends me the supplies and hires the nurse to come and hook me up to the IV and everything, called me this morning.  They did not have an authorization from BIC for my infusion this month.  I had, and F had, been trying to get a straight answer as to exactly how often BIC wanted me to go for bloodwork- every month?  Every other month?  No one seemed to know. 

I got off the phone with the infusion company, and called BIC.  I spent about 45 minutes altogether on the phone with them, about half of that time on hold.  They eventually told me they had nothign from Dr D regarding medical neccessity for the IVIG.  I sighed, hung up, and called Dr D.  When I told F what happened, she burst out, "They're lying!"  I told her I had assumed that, since this is an insurance company, after all, and my dealings with insurance companies have NEVER been good, or easy.  F and I hung up, with her promising to call BIC right away and smack them around a bit.

A couple of hours later, she called me back.  All the paperwork should be in order by the end of today, or tomorrow at the latest, and then the infusion company would call me to set up delivery.  Oh, and BIC wants blood from me every month from now on.  I texted my nurse to let her know there's an excellent chance we'll have to postpone this month's infusion a few days. 

Why is BIC suddenly so gung-ho to get blood from me each month?  Well, the bloodwork is to check on levels of various proteins in my blood, most notably, IgG.  Essentially, they are hoping the bloodwork will show I am all better, so they won't have to pay $10,000 a month anymore.  I should be so lucky, right?  After nearly 39 years, a spontaneous cure. 

I go through agita like this with my insurance company a few times a year over various things.  My son needs occupational therapy, and was getting it (and getting it paid for) for two years, but insurance quite suddenly decided they weren't paying for it anymore.  They give me crap about various medications I take to, you know, keep me breathing.  They randomly decide that I should get generics when my doctor didn't prescribe the generic.  And I have what is considered to be in this country excellent insurance- I work for a public school system in the state of New Jersey, and therefore have state worker health benefits.  My insurance is widely considered to be one of the best in the state.  I'm sure it is very good if you're someone who's, you know, healthy, and only needs to go to the doctor for a strep throat once or twice a year, and never have to take any medication aside from an occasional Advil for headache.  But for people with chronic illnesses, insurance is a nightmare, even if you have "the best". 

I don't know all the ins and outs of the health care reform act.  However, I do know this: our system is broken, badly, and needs fixing, now.  Maybe if we had a health care system like the UK has, and the government paid all health costs, I would not have gone so many years without IVIG, and would not have nearly died not even six months after bearing my son. 

Wednesday, January 12, 2011

I wonder, sometimes...

...what it's like to be healthy.  My health limits me in little ways people wouldn't think.

For example: We are going to Disney World later this year.  Originally, instead of summer, we discussed going during one of my school breaks.  I vetoed the February break week immediately, with the words, "I'm usually recovering from somethign that week.  I don't want to spend my vacation sick."

I don't shake hands with people in church (I'm Episcopalian) during the winter at all.  I tell people I have a cold and would rather not, because I don't want to give it to them.  (Thank you, H1N1; people are a LOT more accepting of this ow than they used to be!)  In reality, though, I don't shake hands because I am afraid someone will give ME something.  This is the same reason I "dip" the Eucharist and don't drink from the Cup. 

I have to plan my schedule around my medication schedule.  Any medication works best when it's taken at or around the same time every day.  This means every 12 hours, I have to use my Symbicort inhaler.  Every night around 7pm, I have to take a few other pills.  Every morning as soon as I wake up, I need to take Nexxium.  And so it goes.  And, yes, I do notice when I forget or am late to take my meds for whatever reason.  When I go out in the evenings, this also produces a dilemma: do I take everything before I leave, and be able to breathe, but take the chance that the various meds will make me too drowsy to safely drive home, or do I wait until I get home, and hope that I don't have a coughing fit or asthma attack while out? 

Most of the time, I'm of the opinion that my situation, having been sick my whole life, is much easier than for someone who was healthy and now has health problems.  I don't know what I never had, so how could I really miss it?  But sometimes, like tonight, when I'm feeling melancholy, I wish that I could experience just for one day how it feels to not have to take any medications, or remember my inhaler, or hear someone sneeze or cough and not immediately worry that I can feel the little disease-filled droplets making their way into my system.

Thursday, January 6, 2011

Coughs always linger for me...

...and when they do, I sound like I belong in a TB ward.

I'm used to my coughing.  My husband is used to my coughing.  My son is used to my coughing.  My whole extended family and my husband's family, they're all used to my coughing.  Outside of those folks, though, people give me The Look.  You know, that look.  The one that very clearly says, as they inch away from me while trying to not look like they're inching away from me, "Wow, she's got flu or something.  I better get the hell away from her!" 

I had this happen to me today, at the library of all places.  I was on one of the computers, looking up a book I wanted to read, and there was a woman not much older than I am at the next computer.  I was coughing, because, you know, I'm just getting over a cold, and I do that.  It was pretty loud, and the woman at the computer next to me sighed noisily and muttered, "That's it.  I'm outta here."  And she flounced off.

Now, I don't know for sure she left because of me.  I didn't even really notice her until she did that, beyond the vague awareness that there was a human next to me.  But this sort of thing has happened to me, pretty much on a weekly basis, since I was very young.  My aunt told my little cousin he had to hold his nose and cover his mouth around me because I might "give him something".  I eventually forgave him, since he was only seven or so.  I have never forgiven my aunt, who was an adult and should have known better, especially since my mother had explained to her what my deal was.  I was bullied from kindergarten all the way through 12th grade on this issue, in addition to other things.  And no matter how many times I experience it, it still hurts.

Not much better are the comments: "You sound terrible!  You should see a doctor about that!"  No, really?  I like to cough like this and constantly draw attention to myself, thanks. 

Wednesday, January 5, 2011


The boy (and I) did fine.  He was quite annoyed to find out he couldn't have his usual juice, or even water, this morning as soon as he got up, and was a bit whiney about that.  But otherwise he was in an okay mood- he watched a couple of shows and played while my husband and I got ready.  We were driving in seperate cars because D had to go to work as soon as the boy was discharged. 

Things went very smoothly.  A couple of the nurses remembered him from our tour the other day and greeted him by name, which was VERY nice- I could see by how he held his shoulders that the fact that these people knew him relaxed him a bit.  He had four of his stuffed animals (his "buddies") with him, and showed them off to everyone.  He also informed more than one nurse that Chick, his, well, baby chicken, was very nervous about today and did NOT want to breathe in the "sleepy air".  That was the biggest thing from the tour that bothered him.  He screams bloody murder on the rare occasions we have to use a nebulizer with him, so I'm not overly shocked by this. 

We got him out of his shirt and into the hospital shirt without incident, and I robed up as well, over my street clothes, since I was going into the OR with him.  When it was time, he picked up his buddies and began walking with the nurse, while I followed behind them, talking to Dr G.  Little Man was so involved in his conversation, he forgot he'd asked me to carry him into the OR, and walked himself.  When we got to the room, I said, "Oh, look!  It looks just like the room in the Curious George book!"  No lie, it really did. 

That's when he started to fall apart.  Still clinging to his buddies, he shrank back against me.  "I don't want to lie on the table!"  I tried to get him up there, but, even though he's only four, he's quite strong, and I couldn't.  We ended up with him on my lap, me holding him, Dr G holding his head, and a nurse holding his legs so he couldn't kick us while the anesthesiologist held the mask to Little Man's face.  His blood-curdling screams eventually faded to moans, then whimpers, and then trailed off, while his eyes rolled up towards the back of his head...and didn't close, which freaked me out.  We laid him down on the table.  "He's still moaning.  His eyes are open," I said. 

"Yes, that's okay.  It's normal," the anesthesiologist reassured me.  I gave Little Man a kiss, and Dr G gently escorted me out.  "You did a great job," he told me quietly.  "Just remember, all this is much harder on you than it is on him."

Fifteen minutes later, Dr G came to tell us it was done and everything was fine.  Little Man woke up quickly, ate and drank immediately, and was plenty alert and in no pain, so we were home by 10am.

I had been concerned I wasn't going to be able to go in with him, because I have a cold, and I look and sound like it, but no one said anything about me hacking up a lung and blowing my nose a lot.  I'm glad.  My husband is a great father, but there are some things I just think Mommy is supposed to do...and I'm better at than my husband is.  ;)  Apparently I do have a bit of Mommy in me, and can be a tough cookie when I have to be, which is nice to know, too.

Tuesday, January 4, 2011

My son is having surgery tomorrow.

It's ear tube surgery, and very minor, as far as surgery goes- it'll be about 20 minutes total.  We should be home by noon.  This will be his second set of tubes, too.  He had surgery before, in July 2009, but those tubes, as they're meant to, fell out at some point recently, and he subsequently had three ear infections in three months, which is the magic number they look for. 

He has inherited this tendency towards ear infections from my side of the family.  My brother and sister, neither of whom have immune issues, also got frequent ear infections as children, but neither of them ever needed tubes.  I did, at age seven, so I remember a great deal of that whole deal. 

My biggest concern about tomorrow really isn't about his physical well-being- he's had this surgery before, and come through fine, and I've had this surgery before, and obviously lived to tell the tale.  I also trust his doctor absolutely.  My concern is for his emotions- he's already quite nervous.  We just told him about the surgery over the weekend; I figured there was no point in having him worry even longer than that.  Also, he and I took a tour of the surgical center yesterday where he'll be having the surgery. 

Looking back on my childhood, with all my medical woes, I don't remember my father being there for much.  I do, however, remember my mother.  My mother has always been a force of nature, a veritable god to me.  No matter what I had to do- spend a week in hospital for various tests, surgery, multiple x-rays and blood draws- my mother was always there, firm and calm and strong.  She is the one who has never allowed me to pity myself, or limit myself because of my health.  She raised me as she would have any kid, and never treated me as sick.  I only hope that I can be as strong for my son, not only tomorrow, but all his life, as she has always been for me.

Sunday, January 2, 2011

How I spend my days

I am a sign language interpreter.  I work full-time in a school district.  Most of my time there, I have worked in the high school; this year, I work in the high school in the mornings and the middle school in the afternoons.  The district I work in is a receiving district for deaf and hard of hearing kids from all over the northern third of New Jersey.

I go into "regular" classes with the deaf kids, and anything the teachers or hearing kids say, I sign, and anything the deaf kids sign, I voice for them.  I'm not their teacher, and do not grade them.  I can and will advise teachers as to whether something they expect is, for example, typical for a deaf student, though.  One example is a class I am interpreting this year.  The teacher gave a test, and part of the test involved short-answer questions.  The teacher showed me the responses from a couple of the deaf kids, to find out if they made sense to me.  (One student essentially wrote in American Sign Language order and grammar, but the answer was the correct answer, so she gave credit for that.) 

I have a degree in Education of the Deaf, and a degree in Interpreting for the Deaf.  Yes, interpreting is a real job that one needs to train for.  Anyone who knows some sign language cannot just go out and start interpreting.

I like working in the schools- the kids have a way of keeping me young, which is good because I have a tendency to take life far too seriously.  Working in schools, however, really wasn't the most intelligent career choice I could have made, what with all my health issues.  Schools, as we all know, are veritable petri dishes, filled with germs, and kids who don't wash their hands or cover their sneezes.  I've had more than one occasion when a kid coughed or sneezed near or on me, and all I could think was, "Damn, that's going to suck in about four days." 

The benefit of working in a school, if one has health issues?  The fact that I only have to show up for work 180 days a year, and I get ten sick days on top of that.  Also, the whole getting out at 3pm thing- if I feel like I'm sick, I can call my doctor and get an appointment that day for 3:30pm or so, and have time afterwards to go to the pharmacy and get whatever scrip he's given me, before I have to go pick up my son at daycare...and never miss a moment of school. 

Oh, and the health insurance is pretty good, too.  Even if they do give me a hard time about...well, pretty much everything. 

Saturday, January 1, 2011

March 2007 is always with me

In some ways, that terrible time when I was so ill, still suffering from not-properly treated Post Partum Depression, and trying to figure out motherhood, will never ever leave me. 

One of the things I have always had to deal with to a certain extent is odd little pains now and again.  I get a charley horse in a muscle on my ribcage occasionally; I am sure I look really interesting as I try to stretch that one out!  My lungs will hurt sometimes, if I am really sick, or if I am having an asthma attack.  When I'm really sick, and coughing a lot, I pull various muscles in my chest; I have even cracked ribs from coughing.  (How do I know I cracked a rib and didn't just pull a muscle again?  Trust me, I know.  I felt it crack.)  That was is superfun, because it takes six to eight weeks for it to fully heal.  You can't wrap a rib and immobilize it, as you would most other bones.  The ribs move with every breath you take. 

A couple of hours ago, I had a pain in my back, on the right, and difficulty drawing a deep breath as a result.  I immediately began to panic- is it another empyema?  I do feel like I am coming down with yet another cold, but it's not full-on yet.  I used my rescue inhaler, to see if it would help.  Sure enough, by about ten minutes after that, I was fine. 

Moments like this, and the four scars from chest-tube surgery (that still itch sometimes- what's up with that?), remind me all too well that I am not and never will be normal.