Tag Archives: sleep

Blueberry muffins. Frick.

5 Oct

I have noticed that Alex’s focus and ability to listen and hear us has been not quite as powerful as it was the first week we had him off the G6PD trigger foods… That week showed a dramatic difference, as did some of the 2nd week…

This evening I found out that he has been eating the snacks at school that they give all of the kids (even though we have been reminding him on a daily basis to eat the snack we put in his bag).  Today it was blueberry muffins (most commercial muffins contain soy or soy derivatives and blueberries are an off limits food).

*headdesk*

Long discussion took place… Baldguy will talk to the teachers in the morning (again).

*yawn*

Long day.  I have been sleeping all of this week.  So exhausted.  I’m happy that blogging allows me to start a post and finish it as I can.  A word here, a word there… No time or energy constraints (even on the days where a slow one word at a time is pushing it, far from my usual 120wpm)…. No pressure.

More tomorrow… Methotrexate day…. Though the day of is usually fine. Thursday through Tuesday are worrying me, as I attempt to stick to my NaBloWriMo pledge and keep kid in bread (thank goodness for the bread machine or all of the time I’m knocked out by this med would have him living on shredded cheese and cheerios).  It’s hard to carve out a life when you’ve only got max 16 hours a week of functioning, but that isn’t a choice, it is what it is.

xo

Bek
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The Sun Will Come Out Tomorrow.

9 Aug

Hello!

Here I am!  No really, I’m here!  Stop rubbing your eyes. This is not a mirage. I am actually updating my blog with a brand spankin’ new entry.

So, how has everyone been?

We are coming up on the end of the summer, or at least the end of summer vacation for those of us with kids.  In our little nook of Florida, school actually started today for some counties, and starts for ours next Monday.

My last blog entry involved trying to raise funds to send Alex to a special Aspie camp in Ohio.  An extra huge Thank You to those generous folks who contributed!   Unfortunately, we had made plans based on my first few weeks of methotrexate therapy, when I was feeling alive and awake for the first time in years.  I swear, I though the one or two days of fatigue would be manageable.

But things changed as we upped my dosage.

And the fatigue started to spread as some of the joint pain started to dissipate.

And it spread over me like molasses, gripping my feet then slowly weighing the rest of me down.

I started to imagine the methotrexate pills as Liliputian military lashing Gulliver to the ground.

And at first the ties on my body and brain would loosen after a few days.  I’d have 2 days of exhaustion, sleeping around the clock.  I have not slept so deep since before I carried Alex in my belly, and certainly not in the 7 years since. I am his guardian, his advocate.  I am hypersensitive to sound and smell.  I am always alert, just in case. Because I know it would take nothing short of a car alarm blaring an inch from our bed to wake the baldman up.  So I am in bed, muscles tense, dreams shut out, senses alert.

But methotrexate sinks me into this strange isolation tank as I start to nod off and for two out of seven days the world carries on as I dream vividly, and soak my clothes and the bed sheets with pouring sweat, and wake only in the evening, to recharge with pedialyte and whatever I think I may be able to keep down before resuming this odd sleep, and the handful of medications that keep me alive.

Then I was having a couple of days of fatigue, but not sleep-coma fatigue- more like sleeping away the morning, waking up around noon, and then actually functioning for a couple of hours.

Then we upped the dosage, twice, and each additional little pill sucked more life from me, even though the labs showed that it was also cooling the inflammation in my body and my markers dropped to within normal ranges.  I have a good doctor though, who sees his patients fully, and his thought was that as I wasn’t feeling better then we must continue looking for answers and testing treatments, as numbers mean nothing when you feel like crap.

I slept 3 days of every 7, then 3.5 of every 7, until finally, today, I realized that I had slept 5 out of seven days, and felt like I could sleep the next 24-48 and still be exhausted.  My body started hurting from lack of use instead of swollen and misshapen joints.   My muscles hurt as though I was running a marathon everyday, as my meds made me contract every one and hold the tension, even while sleeping.  Everything felt so pulled that just taking a single step, or sitting up at the edge of the bed, threatened to break me.

I weighed the pros, and the cons, and realized that I had traded an existence that had been modified to fit around the pain and fatigue of rheumatoid arthritis for one that was built around the pain and fatigue of the treatments for rheumatoid arthritis.

I had panic rising up in my chest last night, that I don’t want it anymore.  The idea of Thursday coming up fast and the idea of taking those pills again filled me with dread, I am feeling so cornered, so trapped.

So I called the doctor.

And I am stopping methotrexate now. I will not take my dose this week for the first time since the beginning of May.  I will continue to take the Plaquenil and the tiny doses of Prednisone.  In the beginning of September I will have my next labs and appointment with my Rheumatologist and we will work from there.

For me, this treatment was worse than the pain and stiffness, and the fevers inched higher on the meds than they did off of them.  It didn’t matter anymore that my joints felt better than back in May, because I can’t use them if I am sleeping this much…  This experience for me has been like getting the flu every week- I’m either coming down with it, in the thick of it, or getting over it.  The getting over it and coming down with it parts keep getting smaller, so that I feel like I have a five minute stopover and my next flight is from another concourse.  And Alex needs me.  And not just during those little glimpses of OK.

So I am done.  Another medication that I had a crap reaction to.   I’m allergic to most of the meds they use to treat inflammation, at least the ones with a mellow side effect profile. I’m giving my body one week to sleep the rest of the toxic soup away and then I’m going to do some hard planning. Time for balance.

Oh broken body, please accept something without protest.

But it can’t do that, as what kind of battle strategy would that be.  Auto-immune disease is a bitch.  It feels strange accepting and caring for a busted up body that keeps trying to derail all progress.

I must be stealthy and ninja like. I must be ruthless, ferocious.

Game on, body. GAME ON.

Xo

Bek

Alex & The Time Machine

25 Feb

Alex & The Time Machine

Originally uploaded by CleverIndie

I was attempting to nap yesterday afternoon, as I was wiped out from the MRI contrast and as I had to take off the dexcom for the MRI I took the opportunity to test out my old (not expired, just previous) pain meds, which made me quite drowsy – which I do not remember, so maybe I was just drowsy because the pain was low and so manageable…  My eyelids fluttering closed is the signal for kiddo to find the noisiest game or toy to play at this end of the condo, while hubby disappears into the bathroom or suddenly is compelled to do something that he has had years to complete but right now he cannot he break focus from it.

So I usually don’t wind up napping.

Once I was out of bed, and annoyed, kiddo decided that he was going to nap. And he did. We could not get him up for dinner, homework, nothing at all….From 5 until 11 he napped…Jeff carried him to the bathroom at some point and decided that Alex was down for the night and closed his bedroom door…

At 6am today there was a very distressed little boy climbing into our bed. He was losing his marbles because he missed dinner and now the sun was coming up. Alex is very rule and schedule based. The world ceases to turn for him if something isn’t complete, like a ritual, like dinner. The new day starting without him having eaten dinner is somewhat like if you made a non-PDD kid go to school sans clothing. (assuming the non-PDD child isn’t in love with their nakedness the way many in the 2-4 year old set are, of course)… It’s not right, it’s not how things are done.

So he lost it. He sat on our bed and wailed as though someone has stomped on his heart and the pain was unbearable. We had not caught on just yet, and tried to tell him that it was ok, that clearly his body needed rest more than dinner and if he was hungry we could make him some toaster waffles.

But he needed dinner.
And the sun was coming up fast.
And the screaming grew louder.
(sorry to our understanding neighbors who never complain…you have no idea how much we appreciate your kindness.)

I toasted some waffles. Alex looked at them as though they were a squirming platter of venomous snakes.

Finally, absolute brilliance struck Jeff.

He declared that it was still night in our house. He shut the shutters, dimmed the lights, he heated up a slice of pizza and called Alex to have dinner in the den. Alex still wasn’t buying it, but he was willing to listen.

Jeff jammed a few bites of pizza into Alex’s mouth. Alex calmed down and declared that hey could now have breakfast.

*sigh*

But Jeff knows that Alex is more detailed than this and this freakout could potentially drag on for the entire day, or even days. Alex requires so much structure, but the world doesn’t always cooperate. We have been here enough to understand a little of how Alex functions, even if this is one trait I do not share with him, I am his mom and I see how his breakdowns become more than mental or emotional, they edge into the physical (when he was a baby we thought that the crying it out thing was still within normal realms when he was still crying after a few hours… and then he’d vomit… that was a clue that what works for some probably wouldn’t work for us, and not because any of the parties involved were being indulgent, we had a different kid, for better and for worse…This was one of our first clues…I wish we could have interpreted it appropriately…)

Alex’s favorite “game” these days is “time machine”…He pretends that Jeff’s walk in closet is a time machine (it has a sliding pocket door, that fits Alex’s description of a time machine)… Jeff finds it funny that Alex’s time machine doesn’t actually travel through time- but it does go to the moon, to the master bedroom, and to target so we can get more Annie’s Mac n’ cheese in the family size box (yes, this is one of Alex’s gems)….

This morning, Jeff saw the opportunity…He grabbed Alex’s hand and said “no! You can’t have breakfast yet! It’s night! You just ate dinner! We must go to morning! To the time machine!”

So we all got in and Alex pressed the appropriate buttons (pretend buttons) and made the time machine sounds… When we “arrived” he opened the door and stepped out and declared “Good Morning!” and was giggly and happy, like any other morning….

Needless to say, I’m putting “time machine” on our list of tools (which I will share, dear reader, soon…promise)…

The picture on the left is a chalk/chalkboard drawing hubby did of Alex in his time machine…He also made him a “pop up”/moving parts card of the time machine for christmas… There was a home depot gift card inside for Alex, so the two of them can build a model of Alex’s time machine…

I love the two of them so much….

I hope you have a wonderful day…. Perhaps if it’s not going your way, you could try the time machine trick? :-)

Best wishes,
xo
Bek

Me.

10 Sep

Me.

Originally uploaded by CleverGirlBek

This is me.

Today, and most days, my burst of energy is around 11am for around 45 minutes. Boyo is usually in school and misses it, he tends to see me at my lowest level of energy (he says “Mama’s energy is blinking red”…Lately everything relates to RockBand it seems…) and he’ll hang out with me in a temporary fort under the blankets and we have this funny little dialog back and forth before the bald guy comes and retrieves him and I hang out, sometimes plugged into the wall so my newest ‘betes gadget can recharge, usually with an earplug in my hand and sometimes crying because I just don’t have the energy these days to get much done and I’m so frustrated and it has moved beyond accepting that I need to adjust my expectations for the day into the endless frustration that getting out of bed in the morning exhausts me so much that I almost don’t make it out the bedroom door.

But I do what I can. I have learned to bring some work to bed with me. I am the queen of containers with little compartments. And I work on working smarter and putting systems into place so I have less to worry about and more time with my little guy.

Kiddo tells me “and then you’ll rest and your energy will be back in the green and you’ll be so happy to play again”…

If only a nap would move my energy I’d be soooooo grateful.

Anyway.
While I was resting today he went to his “office” (his room is set up Montessori style, in little compartments/rooms with 3 foot high walls) and made this for me. I think this is the first thing he has drawn specifically for me. I know this is some sort of a breakthrough, but I can’t get past the tears.

And then I have to explain to him why mama cries when she’s happy…
All of this is so confusing, but he just grabs me a wet wipe and orders me to blow my nose. Which makes me cry harder.

All I know for certain is that I am loved. Really, truly, purely loved.

Wood You?

17 Jul

Logs Logs Logs

Originally uploaded by CleverGirlBek

Like to see my new vintage glass with the reflect-o-matic sterling silver treatment…Glows….

Trying to upload photos and descriptions for a few new pieces….

Anyway, I may be blogging more in the next few days… I have been stuck in bed for the most part all week. While it sucks that baldguy lost his job and our unemployment rate here is pretty miserable, it was good timing as he is keeping after boyo and fetching me provisions.

Something is very wrong in my back and I am trying to figure it out…
I had a big bad emergency spine surgery 12 years ago and the pain is near there…. I fear another infection or that perhaps the vertebrae are finally squashing some nerve… Anyway. It really freaking hurts.

But, I can stand still and type and I feel ok, for the most part….And I’m not a wuss. I have had pain every day for 12 years. But dull, achy pain is one thing, feeling like someone is chiseling into your spine and ribs (on just one side, thankfully) is another.

So here I am…

Had an hour and 15 minute long MRI this morning but won’t know anything until they decide to call me. Medicine is so lax down here it’s ridiculous, so I’m not holding my breath for an answer. When I had the parathyroid tumor two years ago the docs suggested we use a “wait and see” approach. I wound up doing a boat load of research and demanded the scan to see what was going on and then I found my own surgeon to schedule the surgery(Dr. Norman’s Parathyroid Clinic in Tampa- amazing surgeon…). Wait and see. Those things don’t just disappear- they are there and they cause problems until they are removed or you die from the freaking side effects (heart issues, digestive issues, liver issues…yikes!)… So I’m none too confident about my medical care here…If whatever this weird back thing is needs anything more invasive than an alcohol swab I’m heading north for a spell.  If this is another bone infection, I’m worried.  Last time they didn’t find it until I was in ICU, on all sorts of apparatus, in a coma.  No more comas for me, thank you very much.  One was more than enough! I have to be here for my little guy.

Anyway. Here I am….Trying to stay as still as possible while my brain wants to run around doing a happy dance because the new issue of BUST magazine is coming out next week and woohoo! one of my pieces is in the Etsy co-op ad. Yay! So buy a copy and check out all of the shops.

Ok. Going to grab some tea and go be as still as a rock in front of the TV.

Sorry for the kvetching. I’m in a good mood really I am!

Hugs, albeit very gently frame-y ones, all around…
xo
b

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