Alone time and I could be loving it, but I'm dealing with bills and insurance papers. Major yuck.
I'm contemplative, perhaps overly so. Sometimes, life seems incredibly challenging. Now that our son is doing better, I should be rejoicing. But I'm not. Our bills are gastronomical.
Yes, I meant that word. The bills are so astronomical that they're stomach-unsettling. We just can't get ahead. Just can't catch up. I feel guilty going to the dentist for a cleaning or buying new clothes for work. It all goes on credit. This is not how I pictured myself at this age, at this stage. And quite frankly, at this age, it takes a little more to keep me looking a little younger.
I read FB posts in the parent support groups less frequently than I once did. I have found some wonderful friends--PANDAS and Lyme moms--and we commiserate, make each other laugh, provide emotional hugs. But when I do check the support groups, I see the same fears, the same questions that I have had.
PANDAS/PANS is still out there, kicking loudly. Thanks to the efforts of many, many parents, 18 states, 4 cities and one country honored PANDAS with its first Awareness Day.
But--where are the doctors? Other than a few doctors who have thrown their names in the PANS hat (and maybe themselves into the ancient Roman Colloseum,) many doctors still deny that PANDAS even exists. And others don't know enough about it to treat it adequately.
In the four years that I've been dealing with this, my family has seen at least 25 medical and mental health professionals for my son alone. Twenty-five! No wonder I'm tired! That doesn't even include doctors, etc. in hospitals we visited. That doesn't include the dentist. Or the doctors my daughter or husband or I have seen.
It got to a point where I just didn't trust doctors that much anymore. I'm sorry, but our beloved doctors just don't know much. I had to research, read, learn, and when I finally came upon PANDAS, it fit. Like Cinderella, the slipper fit. Unfortunately, there is no "one" cure for this disease. Unfortunately, educational institutions don't understand it. Unfortunately, even the pediatricians in my children's practice will say it's "over-diagnosed." Unfortunately, some of our friends and family just couldn't hold on for our wild, tumultous ride over PANDAS mountain.
Fortunately, we know who really cares. Fortunately, my husband and I survived, and together. And fortunately, I was then able to find: not one, not two, but four different doctors who confirmed the diagnosis. Then, we discovered Lyme as well. It mixed up into one citrusy, not-so-cutesy cocktail and set this kid on a rampage.
Well, he's not rampaging anymore, thanks to doctors. I'm aware that puberty can throw him off. I know that a bee sting can throw him off, for goodness sake. Or the cold that we floated through the house this week. But we're managing for today. He's a happy, kinda normal kid. He's bright and a pain in the butt to his younger sister at times.
And me? If I had more money, I'd do more for myself. Go get my hair straightened. Do some shopping therapy. Go away for a weekend or week. I AM going to the first-ever Northeast PANDAS conference in Providence, R.I. And while I'm thrilled to hear the speakers, I'm even more excited to see my fellow PANDAS parents. And to get away overnight! Yeah, this is what I do for fun now-a-days.
So, here I am, going through bills, submitting to insurance, trying to get reimbursement (or insurance to cover the bill for $3,239 that should never have come to us from LabCorp.) Stress? Hell, yeah, but a different kind of stress.
Alone time? Not the kind I wish for. But I remind myself that things are better than they've been in years. I never thought it would be like this. And if it can happen for us, it can happen for you, too.