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Oxygen masks are hard to put on

Oxygen masks are hard to put on

 We’ve all probably been reminded of airplane rules, how they tell adults to put on their own oxygen mask before their child’s one.  It’s part of a series we get told as autism parents, and I don’t think I’m the only one that can get annoyed by them.  The reminders feel like they are saying “You are responsible for your own burnout, your own tiredness.  You need to take time to put yourself first.  That’s on you”  And I don’t even need to explain to those of you who are living this life the flaw there—how impossible it can be to get even a minute to take care of yourself, how none of us can just say “Okay, today is for ME!  I’ll call the handy available affordable babysitter, who will be right over, and I’ll go out to the spa and to lunch and to the museum and a hotel overnight and then I’ll come home and be a better autism parent, because I did the right thing and took care of myself!”  Ha.  HaHaHa.

I say this because I think you’ll all get why over the past 9 or 10 years, I ignored a lot of signs my health was worsening.  I had a few diagnoses already—NASH liver (non-alcoholic liver disease), Sjogren’s syndrome (an autoimmune disease that causes dry eyes and mouth and extreme tiredness) and hypothyroidism, along with smoldering diverticulitis.  I figured all of those were more than enough to explain why I was so extremely tired all the time. I assumed they were also why it was becoming increasingly hard to concentrate or multi-task, and even why I had pain in my muscles and in my bones al the time, every minute, always.  When a year or so ago my vitamin D was extremely low, low enough that several doctors said they’d never seen a lower read, I just took more D.  When, over the course of the past 9 years, I had blood test after blood test that showed I had high calcium levels, I didn’t investigate and neither did any doctor.  Those tests were never the focus of my blood tests.  Instead, my primary care doctor constantly tried to get me to take cholesterol drugs, which I weren’t convinced were safe for my liver.  Finally, I decided to switch doctors.  I was feeling increasingly unheard.

I saw my new doctor, he ordered blood tests, he saw my calcium was once again high, and miracle of miracles—he ordered one more test, a test of what is called Parathyroid Hormone.  My PTH level was sky high.  That was all it took.  He diagnosed me with Primary Hyperparathyroidism.  

For those of you who don’t know what that is—in a nutshell, it’s when a parathyroid gland (or two or three or four—you have four, located on the back of your thyroid) goes haywire.  It tells your body you don’t have enough calcium, when in reality, you have too much calcium.  Your body goes crazy trying to get more calcium, and takes it out of your bones.  The result is the symptoms I’d been having, and more—extreme tiredness, muscle and bone pain, low Vitamin D, confusion—and there are many more. Do a quick Wikipedia search about it and you’ll learn a lot.  And PLEASE—the next time you have blood tests, check if your calcium is high, even a little high.  If it is, ask for a PTH test.  Right away.

There is only one cure for hyperparathyroidism—surgery to remove the haywire gland.  I had all kinds of imaging tests to try to locate exactly which gland had gone bad.  They weren’t definitive, so I went in for exploratory surgery.  Luckily, the gland was found quickly.  The surgery took about 4 hours, took out the bad gland, I was in the hospital only one night, the main pain afterward was just from having had a breathing tube, and as parathyroid hormone has a half life of only about 4 minutes, by the time I came out of anesthesia, I was cured.

And, incredibly, within days, the pain I had felt non-stop for years and years and years was GONE.  Not just better, but gone.  My confusion was greatly improved.  I felt just…better.  Better like I had thought was no longer something I could feel.

My point here?  Well, it’s partly just to educate people about hyperparathyroidism, which is sadly underdiagnosed.  But it’s more to say—we as autism parents, sick or not, undiagnosed with some surprise disorder or not, just can’t put on the oxygen mask easily.  We are used to being tired.  We put our kids first, not because we are saintly self-sacrificing parents, but because we don’t have a choice.  Our kids need us.  They need us 24 hours a day, 7 days a week, 365 days a year.  And if our kids have severe autism, by any name you choose to call it, as Janey does, this will not change, not for our whole lives.  I could have easily gone the rest of my life without the surgery, without the diagnosis, because my life simply didn’t leave me the energy, the time or the help we needed to get the diagnosis.

Even to have the surgery, Tony and I had to ask our sons to take time off of work.  They did, willingly, and they took excellent care of Janey.  But that is not something we can do except in emergencies.  If they had not been able to do that, or if I had been a single parent—I don’t even know how I could have had the surgery.  

We need a structure in this country to provide REAL help for people caring for those with severe autism.  We need it NOW.  It exists in most countries.  I know that from my hobby of exchanging postcards with those around the world, and from hearing from other parents through this blog.  We need it not just so we parents can get a break, but so we can live.  Literally, live.

Janey did not do very well with my surgery.  The day before the surgery was her last day of school.  Usually, we would have talked to her a lot about this, and had a busy day set up to make up for the lack of school the next day.  But we were pretty distracted.  So, the day of my surgery, she had no school, and Tony and I both were gone from the house—something she is supremely unused to.  She had fun with her brothers, but then the next day, again, Tony was gone getting me home.  When I got home, I had to stay away from her for a few days.  She likes to jump on me with enthusiasm, and my incision made that unsafe.  The incision was also big and scary looking, like someone had tried to cut my throat (it’s already a lot better looking now) The surgery was on a Thursday.  By Sunday, Janey was in the worst shape mentally we’d seen in years.  She was screaming non-stop, all day.  She frantically took shower after shower, asked for ride after ride, bit her arm and wailed and was so unhappy we worried she’d broken a tooth or something.  It took me getting up the strength to go for a ride with Tony and her and me finally doing what I should have done from the start—explaining over and over what had happened, telling her my hurty place would get better soon, giving her treats and spending calm time with her–to get her calmed down.  She still is avoiding me when she can, quite bothered by the scar, but much better than that awful Sunday.  We were given a vivid reminder we can’t ever take the years of vastly improved behavior and happiness she has for granted.  We were also given a vivid reminder of the challenges of self-care.  Caring for ourselves as parents isn’t a zero sum game.  Caring for ourselves often results in less time to care as well for Janey as she needs.

And so—we are into another summer.  I hope it’s starting out well for all of you.   Good health to you all, and check your calcium!

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