The Illness

As many of you know, one of our children has been struggling with an ongoing illness since January.  After multiple trips to the ER and specialists, thousands of dollars spent on co-pays, and many hours of missed school and work, we have yet to establish an accurate diagnosis and an effective way of treating her.

*(not our kid - free image from freedigitalphotos.net)



Here's what we know so far:
1.  This illness appears to be non-life threatening and not degenerative (Thank God).
2.  The kid's quality of life is very negatively affected by The Illness.
3.  Allergies and sensitivities to foods play a part in her condition.
4.  Her immune system appears quite weakened (she gets EVERY virus).
5.  Most of the doctors are well-meaning but haven't got a clue how to treat this.

Here's a few of the ways our lives have altered over the last six months:
1.  On any given day, the kid will have an incredibly painful headache or stomachache.  Sometimes the meds help, sometimes they don't.
2.  The list of foods that cause reactions (itchy mouth, tongue, throat) expands weekly and to date inclues: all fresh fruits (except strawberries), some fresh vegetables, soy products, wheat/gluten, some kinds of red food dye, and chick peas.
3.  On any given day I will be close to overwhelmed with anxiety or depression from watching and worrying about the kid and her pain.
4.  The other kids have had to accept that Mom is less organized and more likely to forget to remind them about homework, field trip lunches, etc.
5.  Any and all plans we make are incredibly tentative depending on the kid's day-to-day pain level.

What's most frustrating of course is watching the kid in pain and not being able to help.  I'm grateful that The Illness isn't worse, but I don't really have hope for fixing this in the near future.  We take it a day at a time and do our best in the now.  I don't write as much as I'd like to.  Writing happens in 15 minute bursts after I've stared at the screen for three hours, checked my phone for messages from the school, and ordered yet another book about allergies from the library.  I don't meet the deadlines I'd hoped to.  I've had to ask everyone for patience with my schedule and needing to change appointments.  I have had to give myself permission to take the time to see the counselor, get a massage, take a bath, go for a walk, or read a non-fiction book (or write a cathartic blog post).  Because if I don't do these things, I won't be able to cope with this.

Motherhood through this illness has become a different job.  Sure there's still the day to day tasks that ensure the kids are fed, clean, and generally not little assholes.  But I've had to become an expert in The Illness as see her experiencing it.  At any moment, I've got to reference a database of information about virus history, symptom description, and food reactions and exposures.  I've got to be able to recount and explain all of this on the spot from memory because apparently the doctors DO NOT TALK TO EACH OTHER.  Seriously, I have to repeat EVERYTHING every time I see a doctor?  I thought we had electronic medical records.  These doctors can read, right?

The implication of this is that I know more about this particular case of The Illness than any doctor I'm seeing.  I don't have the same medical background that the doctors do, but I'm not a total idiot either.  Kid has severe allergies.  Allergies mean immune system is out-of-whack.  Immune system not functioning correctly means she gets sick.  A lot.  No, doctor, I don't want to watch a video about a treatment method that might help in three or four years, I want you to look at my kid as a whole person.  Look at her as a mini-ecosystem, if you will, and The Illness is an invasive species that has come along and screwed everything up.  Here's the kind of scenario we're working with:  The bats are dying from an invasive parasite and so they don't eat the mosquitos.  The mosquitos are out of control and carry West Nile Virus so no one takes vacations to the lakes.  The state has less money in tax revenue due to lost tourism money.  Lost tourism money means fewer research grants to figure out why the bats are dying.  Yeah, some version of that kind of frustrating systemic problem is what I think is happening.

The only doctor who comes close to looking at the whole patient is our chiropractor.  What she's doing seems to help manage symptoms and she will actually talk to you for more than three seconds.  We're set to see a new doctor who has training in both traditional and alternative medicine at the end of the month.  Hopefully it will be worth the time and money to see him.  In the meantime, I'll continue to evolve as one part mom, one part scientific expert on "The Illness."