And so it goes..

My neurosurgeon called.  He got together with my neurologist and decided that I did, in fact, have multiple small artery strokes.  They’re not TIA’s.  The are full-fledged strokes only in small veins in the brain, and that’s why they caused damage. They happened over a period of months last year. It started with some cognitive stuff, like getting very confused and loss of short term memory.  Then ataxia.  Then my eye drooping.  Then my leg. Now my vision. All of that since last summer.  One thing after another. Anyway, he asked me if I was still smoking. I’m not going to lie…  And that’s when I got the lecture that this is SERIOUS BUSINESS and I need to quit NOW.  🙄  The truth is, I’ve tried.  Even before all this nonsense. I lack willpower  like crazy.  What can I say?  I’m weak when it comes to some things.  I’ve cut down but I need to take the plunge.

He also asked what I was doing—meaning what did the neurologist have planned. I told him about the whole physical therapy debaticle and told him I quit. He told me what I needed was a physiatrist, not PT, so he gave me a referral.  This is a medical doctor that deals with strokes, brain injuries and spinal issues—not some clowns who don’t know WTF to do with me.  I have an appointment in 3 weeks. He also told me I should be wearing a leg brace.  Nice.

I need SOMETHING, though.  Saturday the ataxia kicked in and I fell again.  I have a nice little souvenir on my forehead from that trip.  That ataxia is Trippy.  I can just be standing there minding my own business and then all of a sudden it’s like someone pushed me.  Sometimes I can catch myself, and sometimes I can’t.  Saturday I couldn’t.  Head met copy machine.

He said the syrinx in my spinal cord is idiopathic (probably born with it) and nothing to worry about surgically. It’s a watcher. It’s symptomatic, though. It makes my shoulders, arms and hands ache like nobody’s business.  Especially when I’m standing. I think that has something to do with the flow of the cerebrospinal fluid when I’m standing upright.  I’ve researched the hell out of it (Syringomyalia).  The disease is very misunderstood and 99% of neuros don’t quite understand it or the symptoms.  The most they can do is put a shunt in it to drain it if it gets too wide.  I’m not there yet.  I may never be (hopefully) but…. symptoms.  That little fucker won’t let me forget that it’s there.

My mom is doing somewhat better. I’ve noticed she’s stopping herself now before she goes too far with me.  That’s a gigantic step in the right direction—since she had it in her mind that because she gave birth to me means she owns me and can run my life (her words) when if reality, she lives with me so I can keep an eye on her!  But let me say one thing to her and she goes spastic. 🙄  But as I said, there have already been improvements so that’s good.

She’s still pissing & moaning about her sciatica.  If she could only feel what I feel in a day and she’d stop complaining. All of my limbs and my back hurt on the daily and I also have sciatica.  I listen to her whine about it constantly and I don’t say anything about my aches and pains. It’s my new normal.  But listening to her pisses me off sometimes.  The woman is 20 years older than me and she’s in better shape than I am!

Work is still crazy busy which is good, and my husband got even busier than before. He said he’s got more work than he wants right now. I’m going to take all of my commission checks and throw them at the bills and we can live off of his income.        All the co-pays added up and I had to use credit cards so I need to pay those off.  As long as he stays busy, my main focus is paying off our debts.  This is kind what has happened in the past couple of years. I’d no sooner get our debts down and then we’d both get slow and rack them back up again. Rat race.

Well, I guess I slam down some more coffee and get started.  It’s my day off but I have a bunch of crap to do around the house. The

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May 1, 2018

When I had cancer, people would tell me about things going on with them, like say their dog dying. Then they’d say, “But that’s nothing like what you are going trough.” WTH? I had cancer, their dog died. We were both suffering, for different reasons and in different ways. My suffering did not negate theirs. Your mom doesn’t feel your pain. She feels her own. Your pain doesn’t make hers go away. It’s hard to be patient when you are in pain, but maybe a little commiseration with her would at least make her feel heard.

May 2, 2018

@emiliasdance You are so right. And I told her that yesterday. I guess I’m Too caught up in what’s going on with me and when she talks about pain, it reminds me of my own.

May 3, 2018

It is very hard to quit smoking. My parents tried many times over.
Is the Ataxia in the ALS family? That has got to be a strange sensation when it happens. I am not sure I would be going too far from a chair.  I hope your forehead heals fast.