Friday, February 24, 2012

How are your kids doing?

Every day I have people ask me how my children are doing.  I truly appreciate this.  It can help me loosen up a little bit, just knowing that someone cares enough to ask!  However, here's the catch:  I never really know day to day.   Emily is the hardest to tell.  She'll complain for a week about a cold sore, but she won't complain about the fact that she can't walk.  That was exactly the case in October 2010 when she was officially diagnosed with JDM.  She'll complain about a scrape, but not because her head hurts from having her sinuses scraped.  She tends to complain more when there is much less pain.  The worse she feels, the less she says.  When you ask her how she is feeling, the automatic response is "Good".  Sometimes we can pick up cues.  Other times we truly are left to guess.

Zach is more vocal right now.  He's much more quick to tell you when something is wrong.  BUT, the worst parts of the disease are what you can't see, so how can I really know for sure?

I have also had several people lately ask me if this could be because of environmental factors, diet, etc.  I will try to make this easy to understand, but it's difficult subject matter, and the scientists aren't 100% sure yet.  Say you have an electrical circuit that is working fine.  Everything is working as intended.  Suddenly, something happens- a trigger is pulled, a lever or switch.  That opens the circuit up, right?  Until that circuit is closed, it won't be right, it will cause problems.  The immune system is the same way.  Here's the problem- the "switch" in this case is invisible.  It leaves no trace.  And you may not  even know that the circuit is open for many years.  Some people have symptoms many, many years before the disease hits.  Once it hits however... Some people are lucky enough to be well managed with just one or two treatments.  Others never seem to be able to find anything that helps.  For a small percentage a significant diet change will help and heal them forever.  Most people find no relief through diet change.  And, if it's an environmental trigger, removing the trigger doesn't help.  We had mold in our wall that went undetected until 3 out of 5 of us got very sick.  We had NO clue that we had mold.  It was hiding up in the rafters of the attic above our kitchen and bathroom.  It was removed, and I know it's gone (because I am extremely sensitive to mold).  That doesn't seem to matter.  Other triggers are bacteria like strep.  Strep and pneumonia can set off autoimmune diseases like RA.  Again, once that trigger is pulled there is no going back.

When I tell people about my kids' situations they often ask me "Are you sure you don't have mold in the house?"  Yes, but even if we did it wouldn't change this either way at this point.  Oh, it may speed it up if we still had mold, but it won't magically reverse.

My kids "good" is different from other people's.  If I don't know how to answer you, please don't think it's anything more than just "I don't know".  As lame as it may sound,  we just don't know.  Some days bring severe fatigue.  Some days bring severe pain.  Other days bring stiffness, and still others bring all of the above.  For my kids, most of the time their pain is lessened.  Em does pretty darn well.  I think it's actually more because she has gotten used to the pain.  Also, remember that a simple cold can become a huge ordeal because their immune systems are suppressed.  This means that, while you & I can fight off a cold or have a simple round of antibiotics "cure" us, this often isn't the case with immune suppressed people.  They fight and fight but it doesn't always work without a LOT of intervention.  This is our life.  We make the best out of it.


  1. This post made me so sad, and I know exactly what you mean! I think about your babies all the time (and all the others that are dealing with one or more autoimmune diseases, which are misunderstood at best.) Don't forget about adding in the issues your oldest "well" child faces every day, since she isn't sick! Between the guilt for being well (much like survivor guilt in more extreme circumstances) she has the apprehension of waiting for the shoe to drop her way (maybe, maybe not, and the wait can make you crazy) as well as the fractured attention, and outsiders considering her so lucky despite all the crud and stress SHE has to deal with... I don't know how you do it. You manage SO well, and explain it SO well. I wish I could do it half as well as you do!

  2. Dee, Kevin, Ashley, Emily and Zach you all are ALWAYS in my prayers. I only wish that I lived much closer so that I could be more help and support to you guys. I know the daily struggles your entire family goes through and I have the utmost admiration for how well you handle it. The Love and Strength that your family has is unmatched and is truly an inspiration to us all. If you guys ever need ANYTHING from your Uncle to the South, I am only a phone call away! I Love and Miss You All!! P.S. Keep up the drawing Ashley!! You have a fantastic talent!! Hugs and Kisses to Everyone !!