Tag Archives: illness

Old pictures and updates…

10 Mar

Found this today.. This is Alex and me. Just before his 1st birthday, he was admitted to Children’s Hospital in Boston for every neurological test except the one the doctor wanted him admitted for (an MRI).  The cribs are solid steel and built like tanks. The nurse told me I could climb in if I wanted to…So I did.

Bek & Lexo the Great (2004)

Bek & Lexo the Great (2004) *click for all blog entries about Alex...*

Anyway, I love this picture and so does Alex and I just felt like sharing on this sleepy Tuesday night. (Can you believe how big he has gotten? Can you believe that his head is now only a couple of centimeters smaller than mine? And mine is in the >98% to begin with!)

For those of you that are curious, we still don’t have results on my MRI from last Monday (yes, it has been almost 9 days. We were supposed to have the report within 24-48 hours.  The neurologist’s office finds this odd as well but hopefully the radiology peeps are just reading and rereading it and writing a thorough report).  I am still having the jello legs/weakness thing and the arm thing. I’ll post when we have more info.  Needless to say I am steering clear of power tools for the time being, but never fear! I have quite a few pieces in my arsenal that you have not seen yet! So I will be posting those and also planning for a “Move us the heck out of Florida to anywhere with an increased likelihood of Jeff finding a job and more options to help Alex rock even more Fund” grab-bag/mystery sachet/container o’surprises thingeroo fundraiser in the near future… So keep those eyeballs on this space and keep your fingers crossed that we get some sort of an answer soon so we can get back to whatever it is we do here.

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Hugs all around,



Finding their mama…

9 Nov

Ok, so my birthday was indeed on Friday.  I am now 33.

Last night and tonight (we are episodic folks) kiddo watched The Nightmare Before Christmas with me (I had never seen it)… He was fine until…

Oogy Boogy is stripped of his clothes and all of the bugs/critters go running and fall into the fire.

Boy was horrified.

I paused and asked him if he was ok.

He said “They are going to find their mama”

(to deal with his fear of bugs-mostly flies- we have taught him to wave his hands and say “go find your mama”… That little concept has made a huge difference as far as successfully keeping the peace and not having a complete meltdown on our hands when dining at the al fresco eatery that my parents prefer…)

Then he said “they went to find their mama and went into the fire and got burned up”

He was so sad and heartbroken…

All of the horrible things he might overhear in a day- on the news, flipping channels on TV, conversations between adults, and the one concept that always hits him the hardest is the idea of someone trying to find their mama.  The idea that the reunion might not occur is just devestating to him…

Shortly after that he declared that he was going to take a big marker and write a line across the top of his head so he wouldn’t grow any more.  The kid is obsessed with growing up and getting bigger (he is very encouraging when the wii fit tells me I’m up .5 lbs… “Yay Mama, you are growing biggest!”…I have to love that someone is happy about that!) and he has declared that he is going to stay the size he is now so nothing changes anymore…  That and he wants everyone to stop working and me to not be so tired and sick so I can play more.

I tell him every night:

“It doesn’t get better than You”

It’s his little insights on everything that make me feel like I am the luckiest Mama in the world.  His sweetness and insights make everything more manageable.  They make everything sweet and they make the world feel safe and warm….

Cure for Diabetes….

11 Sep

Positive thinking and The Secret are not cures for diabetes.

I was just reading the amazing blog Six Until Me (Kerri did a great piece on coworkers and “Diabetes for a day”) and a reader left a comment suggesting that The Secret and focusing on good health rather than bad health may help and even totally cure the blogger’s diabetes. The person who left the comment probably meant well but perpetuating this sort of idea can be dangerous.

First of all, all the positive thought in the universe isn’t going to cure this disease.  All the positive thought put toward understanding the reality- both the physiological and psychological aspects- of the disease may help come up with a plan of action and research that may someday lead to a cure or at least new treatments.

Just adopting a mind over matter, brimming with sunshine, attitude isn’t going to cure this disease.

A positive attitude can make or break a treatment, in some cases, as most of our treatments require a huge amount of effort, and a half-assed attempt rarely gets anyone anywhere.  My rule with this disease (I’ve had it for 15 years) is to be mindful… I hope for the best and work my arse off, with a negative attitude I wouldn’t do either.

There is no cure for diabetes.  There is only treatment.  And it isn’t easy but it is the positive side of reality.  We choose to treat our diabetes as best as we are able.  If we were not thinking positive we would be dead.  So maybe discussing diabetes and the treatment, and our personal experiences, is actually spreading more sunshine then someone who has not been touched by this disease can ever understand.

Every year on Pump Day (my “pumpiversary”, October 31st…This will be my 8th one!) I think about how complete strangers were driven to share information on their experiences…Tips, pointers, and on occasion a shoulder…The type of information that you can only get from experience, or from other people who are driven to educate for the greater good.

To an “outsider” it may look negative or like we are dwelling on this big, horrid beastie called Diabetes, but really, all the smiles and happy thoughts are not jump starting anyone’s pancreas.

What it is doing is making this disease more bearable.  It’s sharing the tools that can help lots of folks live longer and better and healthier and yes, happier.  It’s also serves to educate those who don’t know what it is like to battle this beast at every turn.  Perhaps the folks who haven’t been touched by diabetes and haven’t experienced what it takes to LIVE with the disease will learn to value their health and freedom and work toward bettering their own health so they too can LIVE.


10 Sep


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.

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.

Feel better….

17 May

Feel better balloons from boy…

Originally uploaded by CleverGirlBek

Started feeling more wheezy late last night and only slept an hour because my heart was racing…Went to the saturday clinic at my docs office and I have:
A kidney infection
An upper respiratory infection
Gastroenteritis (seems to have gone away but the kidney and respiratory infections are kicking my arse)…

So I’m on another course of antibiotics for the week….

I got home and hung out at the foot of my bed all day attempting to watch the Indiana Jones trilogy while baldguy entertains little guy.

All of a sudden this afternoon my voice disappeared. I can barely whisper and little guy is really worried.

Baldguy took little guy to Perkins for pancakes for dinner and little guy returned with a bunch of balloons to cheer me up.

How sweet is my kid? Hubby tied them to one of kiddo’s toy spatulas (he went through a kitchen utensil as a lovey phase so we have quite the selection) and then we tied bells to the spatula so I can ring for assistance when I need it (no voice + regular backpain + kidneys hurting + muscle spasms (electrolytes are off from the infections) + elevated heart rate from infection = getting out of bed is an event… so the boys are keeping me in rooibos tea refills (thanks Julie!) and warming up the heatpacks… I’m just happy I didn’t let this go another day or through the weekend. That’s a big problem with ‘betes – little issues can turn dangerous rapidly…. Although I did have symptoms most of last week that kicked my butt w-f, I should have just gone sooner… Oh well.

OK. Back to bed…. I’m finishing up season 1 of Family Ties… Good stuff, haven’t seen it since I was a kid… Definitely worth the revisit….

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