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Tuesday, March 26, 2013

On tiredness, autoimmune issues and autism

The last month or so, a doctor's appointment I had yesterday was hanging over my head.  I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised.  One of the tests done was an ANA test.  I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues.  It's always been negative until this last time, when it was positive.  The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome.  I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that.  However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list.  She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth.  She ordered a bunch more blood tests and an echocardiogram, which I had yesterday.  So now I'm waiting for the blood tests.  Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out.  I have the facial rash which is characteristic.  But I don't know yet, and I shouldn't worry about things I don't know about.  But I do, of course.

I write all this not to ramble about medical issues, but because to me it ties into autism.  If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally.  In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun.  It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain.  I think autism has multiple causes, and I don't think everyone  with autism got it that way.  It's like saying someone has a fever, or wheezing.  You can get a fever or wheezing for lots of reasons.

The main way I think I'm being affected by whatever it is that is affecting me is tiredness.  I tried to explain to the doctor yesterday what this kind of tiredness is like.  It's not like how you feel when you don't get a good night's sleep, although I get that kind too.  It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force.  I can't possibly keep from sleeping when it hits.  Over the past few months, I've given in to this more.  Naps used to be my guilty secret.  I felt like I had to hide the fact I need a nap every day.  Now, I am allowing myself to work it into my regular day.  I need to nap an hour or two each day to make it through the day.  Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.

If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it.  Days I've been home alone with her, when the nap urge hits, it gets scary.  I try to avoid that at all costs.  If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay.  That doesn't really give me the rest I crave, but it's the best I can do.

Autism doesn't exist in a vacuum.  We all have other issues in our lives and our families besides autism.  It's why autism respite is SO important.  If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen.  She would be endangered, and so would I.  I hope the supports I have stay in place.  But I feel for those without such supports, and I worry about those families.


mknecht24 said...

If you think Lupus is a possibility, get a specialist. My cousin has lupus, and it took a lot of work for her to finally get a correct diagnosis (lots of negative/misread blood tests). I really REALLY hope you don't have it, but you need to know for sure. The tiredness is a double whammy for you. You can't ever relax or get a deep sleep with autism in the house. Disaster is always a second away. Plus the mental fatigue. Constant planning and second guessing and mind reading. It is amazing that any of us can stand upright. I wish I lived next door to help you. :)

Suzanne said...

I'm going back to the rheumatologist in a month. She's run a lot of tests which should tell the story. I made a vow yesterday to myself to stop self-diagnosing, as I'm not great at it really! My blood tests are always like your cousins, weird results that don't ever seem to point out anything in a clearcut way. I wish every day you lived next door! Especially today as Janey has a cold and I think I'm going to need to keep her home. And there's no school tomorrow. Arghhh...