Update and count down

Yawns and rubs eyes sleepily*

I feel like I have been in hibernation for a few months now.  I’m so tired guys….it’s just sucking the life out of me.  I work like crazy, never taking much of a break, from before my start time until after my end time, daily.  I’m trying, hard, to keep things going here and sometimes my efforts are appreciated and sometimes they are not.  Most of all, I’m lucky to be working here because the hospital is being forced to cut many, many positions and mine is so damn busy, they can’t do without me.  Silver lining eh?  Well, silver plated anyway.

So that’s all I do.  I work until I’m exhausted, get to the sitter to pick up my son, get him home and hit the couch. Some days I’m out immediately and sleep through until I get up for work again and sometimes I have a few hours to clean the house, cook dinner or even paint my nails if I’m lucky.  The latter is a rare event.

I’m taking my meds (antidepressant, small dose of narcotic pain killers each morning, a heavy duty muscle relaxer and stimulants to keep me awake at work) on a regular basis and I’m eating healthy when I’m awake.  The farmers markets are all open again and I live off of fresh fruit and veggies.  I’ve eliminated soda from my diet almost entirely and my only real indulgences are coffee, tea and a bit to drink now and then – mostly whiskey, mostly on the weekend since I can’t stay awake long enough to enjoy it through the week.  So, I’m doing okay over all.  I’m not depressed, anxiety has been well controlled recently and the pain is fairly even, just flowing along.  I’m not really needing any extra pain meds so that’s always a bonus.

I had an excellent meeting with Colt’s school on Monday morning and got him all set up for next year.  Surprisingly, despite all of their warnings and threats, the school board has allocated an EA for Colt.  I can’t believe the stress these people caused over this….but I guess no one really knew what would happen until it happened.  They are going to introduce Colt to his new teacher before the end of the school year and they are trying to keep his current (amazing) EA on for next year so there’s some consistency for him.  The principal is retiring and he adores her, so they’re going to have the new principal in before the end of the year to get acquainted with Colt as well.  Lots of good planning going on, for once.  He’ll be reassessed by the psych institute who follows him this summer and then we’ll be good and set up to start preparing him for high school.  The psychometric testing will show us exactly where his abilities are and will help carve out the path we’re going to follow for the next two years.  Finally, something we did has resulted in something positive for the boy.  🙂  Doesn’t help that the government around here is going crazy, cutting services for autistic kids across the province.  We’ve lost the only, very small, stipend available to us for his future.  We were banking it for him anyway, but still…it’s frustrating.  They’re going to place a huge burden on the school systems now, because there won’t even be the barely existent help we got with Colt available to the newest little ones on the spectrum.  And these days, psychiatrists are throwing ASD at everything and anything, it seems.  So backwards, it seems.

The biggest event in my world right now, outside of my son, is that I finally get my sleep study results next week.  I’m waiting for them to call and cancel me or something equally as frustrating but I’m trying to remain optimistic.  I get to actually meet with the Fellow who took my case…maybe even the consulting as well.  All of the results should be in including all the blood work, the cardio and brain scans, the sleep latency testing and the overnight sleep study.  I’m nervous but want to know what they have to say.  I don’t want to take more meds, but, will do whatever they suggest I try to see if it helps.  If it’s my back that is causing me issues, the pain control will need to go up at night.  If the pain control goes up, the stimulants will need to go up to keep me from getting all groggy and stupid.  If it’s not the pain or my body waking me because of random signals from my spine, it’s the sleep disorder they diagnosed me with as a child or something similar, I suspect.  The only treatment for that as far as I know is sleep meds to help me stabilize my sleep cycle (I bounce directly out of deep sleep every time I reach it, if the issues are consistent with the past studies) and, possibly, more stimulants to wake me up for the day.  I don’t like either of these options at all.  If it’s something more direct like narcolepsy, not much changes.  I might be able to get my work modified slightly to have different hours.  Maybe working 10 hour days and having a day off through the week to catch up on sleep will help.  No point in planning anything now though, as the answers are so very close.

That said, the thing I worry about most is that there’s absolutely nothing wrong with me.  I am so nervous about sitting in that room to have another doctor look me in the eye for two seconds and then dismiss me with disinterest as the tell me my tests came back absolutely normal.  If that happens, I don’t think I’ll ever go back for more investigations.  It was so defeating, hearing over and over that the constant pain I was in was not being caused by anything.  I was laughed out of one office and it nearly took me right out.  The only fact that keeps me going is that there WAS something there, in the end and it wasn’t as if no one had seen it….they all just thought I was given the results that were in my patient chart and that I was looking for another cause.  The damn report sat there for years before I finally called up my records and paid for a copy to take to a physician in the States who might actually take me seriously if I paid him enough out of pocket.  My doctor hadn’t even been told about those results that outlined the arthritis and the huge amount of degeneration around my cervical spine (and other parts but the worst is from my brain stem to the middle of my shoulder blades – the surgeon I saw, with hope, told me I had the neck of a 90 year old woman with a history of spinal trauma.

…..anyway.  Reliving that isn’t helping much.  I just hope we get somewhere this time.  Appointment is in 9 days.  Counting down….

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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

3 responses to “Update and count down”

  1. KittyHere says :

    I am very impressed with the efforts the school is taking to make sure Colt meets with his new teacher and principal in order to aid the transitions. Smart steps after all the ‘stupidity’ they have put you through.

    Fingers cross the sleep study results yield something concrete that the doctors will understand and assist you with.

    I am finally feeling nearly myself. Still have a nagging bellyache 80% of the time and mild body aches, but I can get out of the house and enjoy life more at least. Thanks for following me on the FODMAP blog.

  2. Birdie says :

    It sounds as if Colt is in a very good place. He is such a great kid and I have no doubt that he is going to thrive.
    I don’t know how you wait for the sleep study results. It is making *me* impatient. Call and tell them I said so. 😉

  3. K says :

    Hello Love,

    I am proud of you for sticking to such healthy habits, and I admire that you can stick to them even when you’re exhausted with work! I wish I could be more like you. Please let us know immediately about the test results. I am thinking of you!

    xoxo,
    K

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