Tag Archives: chronic

A Letter to Patients With Chronic Disease…

18 Aug

I think this blog entry, from distractible.org, offers an interesting perspective… Food for thought for those of us living with chronic illness and food for thought to everyone in the medical profession who may come in contact with PEOPLE with chronic illness.  I do suggest that folks who think that those of us with chronic illness are just negative and whiny, especially about the medical profession, read the comments after the letter from Dr. Rob.

Be sure to add your comment there, or here. That is totally up to you, my dearies :-)

Here’s the link:

A Letter to Patients With Chronic Disease.

xo

Bek

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Stay of Execution

21 Mar

This feels like a stay of execution.

This busted body is fading fast, but now maybe it can get the care it needs to stick around a little while more and advocate for my kid and his special needs.

Grateful.

xo

Bek

Alive and Chicken.

26 Mar

(misheard song lyric)

Just a quick update to let everyone know that I am still here, but energy has been spewing everywhere but the blog! I’m caught mid-xfer…Trying to move everything to typepad, but don’t have the energy to reformat posts and deal with the tagging/category translation screwup… Soooo… I’m still here…Still updating here… Posting occasional photos over there… Trying to decide if I should separate my art and my adventures in healthcare and parenting, but at the same time they all co-exist, maybe not so happily all the time, but I never intended for this blog to be a pristine studio portrait, I wanted it to be a pile of polaroids, fingerprints on the lens and all…So I am still on the fence…Will announce the big move more officially soon.

The universe just keeps dropping traffic cones and those Bob’s barricades hurdle-y mini-fence things (pylons?) everywhere I turn…Just enough so I can put up my arms and say “why!” but then it dumps piles of paper in those outstretched arms, honey gets somehow dumped over my head, and then the freaking universe turns a fan on. A FAN! What the #*@&? (see I have been working on my potty mouth)

Wish I could handle all of this with zen like grace and a serene moon-like glow, wish I could post an entry about managing stress, illness, parenting a special needs kid, financial drama at homeplate, and how it’s all a great big fabulous TA-DA! learning experience, but we all know that when you are eyeball deep n the big steamy, chunky stew that insight will happen eventually, learning may be around the corner, but right now you’ve got to grab on to that carrot wheel and kick because your life, or at the very least your sanity, depend on it.

No really. I’m ok. I am. or at least I will be.

*insert primal yell here* (yeah, not really me…maybe that should read *insert slightly operatic and comedic bellow*)

Huge hugs all around…
xo
B

The Truth Freaking Hurts.

24 Sep

For the past few weeks I’ve been having mega-low energy.  Lower than usual.

Because I haven’t been the most physically active Mama over the past few weeks (or rather less physically active than usual because my energy is low and my muscles aren’t obeying lately) I have been trying to make time for kiddo combined with a little rest…We are trying a more structured afternoon here, so having this sort of Mama and kiddo time of any sort seems to be just what kiddo and I needed…

This week so far I am feeling a little better and actually getting around the house a little easier and even took some new photographs, reorganized some work trays, and plotted some other things I need to do on my calendar…  So, I took a little quiet work with me so I could get something done while I was mildly alert and while boyo was eating his snack, while we both watched a movie…

Half way through the movie, kiddo started rearranging my work tray, as my work wasn’t making a pattern and he needs patterns…. I asked him to please stop and he said he wanted to help me with my work so I wouldn’t have to work so much.

I felt like such an arse.  I haven’t been working that much but I do most of my work when he is getting home from school as the morning is a bizarre game of fatigue just running me down.  I wake up. I get out of bed. I go to the kitchen to make tea.  Before it is ready I have to go sit down on the bed but I barely get there because my limbs are too worn to propel me.  This goes on for a couple of hours. Once the 2 cups of tea and the diet dr. pepper kick in along with my ADD meds, I usually have around 2 hours to do whatever I have to do.  This is going to make me lose my last marble.  I went through similar fatigue in January and I stopped taking on new custom work.   I hope this fades faster as I really do miss being at least mildly productive and I miss the interaction, the dance, that is the custom process….

Anyway, I was talking to kiddo and I asked him if he likes spending movie time with me in the afternoon (his dad is doing the active and more focused work with him) and he said he did.   As it turns out he wants to spend more time with me and doesn’t feel like I have spent time with him.  I get this, I do. I understand it.  The balance is elusive for moms who are healthy.

I asked him if he remembers spending time together when he was a very little guy and he said he did. I asked if we had fun and he told me that we went to the doctor’s office.  He is right, we were in doctor’s offices for his stuff and my stuff, at least twice a week for his first few years.  But that broke my heart.  His most vivid memories of me from his earlier years were in doctor’s offices, and going to sleep at the hospital and waking up with the booboo on my neck.   These things make him very sad. He told me he is worried.  “About what?” I asked. “About you” he replied.  I replied, “that’s funny, I was worrying about you!”…And then I broke down.

I guess somewhere, deep down, I was hoping that maybe he wouldn’t remember.  Or that those things were our normal wouldn’t bother him so much.  But they do.  And they bother me too.

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.

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