Tag Archives: type 1

Thirty nine minutes until midnight….

14 Jan

Just Keep Swimming.....

It’s almost midnight.  1 hour and 32 minutes and our health insurance expires.

I’m not irresponsible.  Really. If anything I’m too responsible.

I have faith that my husband will be approved for an individual plan and that my son will be approved for the care he needs, but it is taking some time.

The next time I will be covered for medical care will be July of this year.

I’m terrified.

I feel the countdown in my veins the way I felt the anticipation of the feeling of falling –that gut in your throat verge of crapping your shorts feeling of falling- when I jumped almost three stories into the azure Caribbean bay almost 10 years ago. 10 years ago.  My body was healthy and strong. Complex in it’s nuances, but nowhere near as damaged as it is now.

1 hour 28 minutes.

I am without medical insurance because I did the right thing. I called customer service two years ago and again eighteen months ago and asked questions to make sure I understood the material, so nothing could possibly go wrong.  Unfortunately, customer service has, as it turns out, less of a grasp on the materials than I do.  The agency has concocted it’s own definition of one small word that is worlds apart from any other definition.  And it is that discrepancy that leaves me wondering what will happen to this broken body in the next six and a half months.

I paid $2000 per month for COBRA + copays for the three of us.  Because of this, I have to wait. F&$% being responsible. I could have just said screw it and lapsed and the boys may have qualified for medical care (better medical care than under our COBRA plan- at least for kiddo’s autism related OT and language therapy). But putting kiddo at risk of not having coverage, and risking spouse being unable to find a plan because of a pre-existing condition, was not an option.  And we couldn’t risk me going over to the medicare plan I had turned down due to group/employer coverage under spouse’s job because medicare was out of our financial means-more so than $2000 for COBRA and copays (or $750-$1000/month which is my share of that expense).  (Yes, you read that right-medicare more expensive out of pocket than COBRA/private coverage. I’ll share my comparison chart here once I update it.)  So for my forty five minutes on hold, I got an incorrect answer. And now the costs could be a burden until I die. Perhaps even longer.

I don’t even get my 45 minutes back to spend with my kid.

I am furious. I am sad. I feel, like my broken body has been pulling me away from my little boy since I got sick and now somebody who was completely incompetent in their work is pulling me away from that sweet child even more.  And I’m furious at the economy and the spouse playing Spore while I sweat and struggle to make sure everyone else is taken care of.  I want someone to share the energy and the drive for something better, for providing for our child, to share the load and the burden so I don’t have to be buried faster.

I want someone to say “Hey, I’m here. Slow down. We can do this together. We are in this together.  I won’t stop to rest while you carry on with your broken back and your unbalanced and heavy load. We’ll carry it together and then we can sit back and enjoy the world together.”

1 hour 14 minutes.

I warned my family last night, “If you are going to get sick do it tomorrow”.

I feel like there should be fireworks.

Or some sort of fanfare.

Or maybe we should have juggled knives or eaten fire or something before the 24 hour countdown to this particular midnight.

But regular activities, the danger of everyday things looms over me for the next 6.5 months.  On top of my already dysfunctional body. My personal time bomb.

My quest for answers about my newer inflammation – in my chestwall, my ribs, my joints, the inside of my eyes, the growth in my sinuses- is paused.  But the discomfort persists. It’s not white hot pain and pressure like my busted and deformed spine.  It is a deep ache when I move, like I feel asleep (in my pasty whiteness) on the beach for hours… My fingers, my knees, my ankles, my feet, my elbows, and my ribs feel like that sunburn pulling raw skin taut. But there is no aloe. And the pain meds don’t relieve it and I’m allergic to NSAIDS.  And it feels like pneumonia too, but it isn’t, it’s just the inflammation in the cartilage of the ribs.

This on top of osteoarthritis, and Type 1/Juvenile Diabetes, and a laundry list of other things. And I’m just so exhausted and I haven’t had a day off in almost 7 years.

So I’ll wait. And I’ll sleep. And I’ll hope. And I’ll sleep when kid is at school. And I am realizing how many things I do in a given day, even when mostly bedridden, that under these circumstance, could be risky.  And I can’t afford that.

I will have to make what art I can without flame, without grinding equipment.

For six and a half months.

58 minutes left.

I only hope that I make it through.  When I come out at the other end, I hope I will have moved on, but I can never forgive the time lost, that belonged to my sweet little boy.

54 minutes.  If I’m going to get sick, I had better do it soon.

My dark humor is coming in handy during this challenging (read: totally miserable and f’d up) time.

Things that occurred to me:

If I’m going to off myself, I had better succeed.  Oh well, 50 minutes left, surely any attempts to resuscitate me would fall after midnight, and no coverage and I know 911 and the hospital do not have a money back guarantee.

To paraphrase Dorothy Parker:

I might as well live.

The other thought I have:

That this is an opportunity to test some alternative (at home, dietary and physical therapy) ideas regarding my bone and joint pain.  Nothing risky, but perhaps I’ll track my personal routine changes here, as well as the results and the costs….

And to top it all off, school wants to put kiddo in 1st grade NOW. More on that tomorrow.

I think I am rapidly becoming exempt from managing all of this with any grace.

My smother calling to complain how I don’t bother to bring Alex to visit her or have coffee will seriously put me way over the edge. How far over the edge?  Like point of no return over the edge.

Please, nobody test this.

I have 44 minutes left. Perhaps I should shower now, so I won’t risk falling in the morning, when my coverage is nil.

I am a bit grateful that I accidentally ordered a refrigerator size box of bubble wrap from Amazon.com.  I’m thinking that a suit of bubble wrap and a helmet would be a good start for me.

Anyway, hugs all around.

Xo

B

41 minutes to midnight…..

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Adventures of The Sneaky Chef in the Cave of the Aspie Kid

15 Jul

Boy Genius

A couple of months ago I intended to blog on this fabulous book (The Sneaky Chef) we had bought, hoping to increase nutritional value for our whole family, particularly Alex. I mentioned Alex’s food quirks and “rules” a little in my post “Islands in the Stream” and promised to check back in about the book.

Well, here I am. A little older, a little wiser, a lot more cooking under my belt than I typically do. I enjoyed my experiments and the creativity exercised in the kitchen. I really enjoyed that because of my abnormal level of fatigue and pain (yay, isn’t arthritis fun!) Jeff did the dishes and the grocery shopping so I could focus on inoculating tasty and fun foods with extra nutrition to make one of kiddo’s primary personal goals (and one of our goals as his parents) come to fruition.

Alex wants to grow up big and strong and healthy.

And we want him to grow up big and strong and healthy as well. (By big we mean: Not frail)

We have always avoided the concept of “the clean plate club” as in my million plus years of Weight Watchers meetings I had seen and heard of the fallout of such parenting & nutritional methods. And, as someone who has been on a diet since 3 weeks old (yes, you heard me: weeks) and I am still experiencing the fallout from that (I’ll cover that in another entry, at another time. Promise.)

So I am particularly sensitive to not taking the warden approach to nutrition. Our goal for Alex, in all aspects of his life, was to give him the tools to be able to make the best decisions, for himself, in his life. This applies to work, health, his personal life, etc… I do want to thank Early Intervention for asking us the important question of what we want for him and his life. We learned to keep it non-specific enough that we don’t suffocate him with our expectations, but enough that we can build goals. Good and important stuff.

So, we decided to start “Sneaky-cheffing” more nutrition into his regular foods and he even helped me (we both got so messy! he didn’t freak out completely! it was wonderful!) prepare a few recipes.

But guess what we found out? Our experiment reiterated that kiddo will probably never eat a casserole or anything remotely resembling a casserole- even homemade macaroni & cheese with real cheese rather than packet of powdery stuff is too much of a multiple texture experience for him. He’ll eat Annie’s Mac n’ Cheese but not the stuff I spent so much time planning and prepping and cooking. He also won’t eat any whole vegetables other than carrots. Think about it: Carrots are the same consistency all the way through- I can’t think of another vegetable that does that…Maybe peeled and cooked potato chunks-but then there’s a certain graininess, and with sweet potatoes a certain stringiness… Anyway, this goes beyond regular little kid dislikes and pickiness- these textures actually make Alex dry heave (or barf. Depending how deep we are into the meal.)

Some ideas from The Sneaky Chef worked beautifully- the idea of adding extra nutrition everywhere has stuck with me- even as far as adding water to a recipe (or instructions on a box)- I don’t add water (well not every time, I still need to work on the planning thing!) but use a nutritious liquid instead. I learned that blueberry juice doesn’t curdle milk and makes a fun colored alternative to plain white milk (or soy milk…Alex seems to change his preferences every couple of weeks)…

I also learned that we can sneak some of the purees suggested in the book into some foods, without objection.

Then Alex saw the jars. Ok, when I first started using the book I made my own purees. But as backups we had the recommended jars of baby food (not all of the purees are available as baby foods, and the homemade purees and mixes are much cheaper and not difficult to make and freeze).
Alex saw the jars. I took a deep breath. He voiced a little panic about baby food being for babies.

So I asked him (remember, he is deeply logical and literal and rule based. Think Spock to the nth power):
ME:Who eats baby food?
ALEX: Babies
ME: Are you a baby?
ALEX: No. I’m a big guy. BIIIIIIIIIIIIIIIIIIIGGGGGG! (makes war face and flexes and almost knocks himself over)
ME: What do you eat?
ALEX: Big Guy food.
ME: If you eat a cracker is it Big Guy food?
ALEX: Yes.
ME: So if you are not a baby and you eat the stuff in this jar then what is it?
ALEX: I’m not a baby!
ME: That’s right! You are a big guy! SO, if you eat the stuff in this jar & you are not a baby then the food in this jar cannot be baby food! It’s only baby food if a baby is eating it.
If a BIG GUY is eating it, it’s called “PUREE”!
ALEX: I like puree!
ME: YAY!

So, after all of our experiments trying to sneak “puree” into his foods we found out that Alex doesn’t like it mixed in. He likes it plain and separate from his regular food.

Of course, he has to announce, at the start of the meal, “It’s only baby food if a baby is eating it. If I eat it then it’s puree!”. Seriously. He says it every time.

Perhaps, if he adjusts to the taste this way, he’ll be more accepting of various textures eventually. Until then, I’m happy to serve him his vegetables in this manner.

A wise person once said, in regards to parenting, “Pick your battles”.

As he slugs down jars of summer vegetables (a sneaky way of disguising what actual veggies are in there- summer veggies are ok, broccoli & spinach, etc -not so much. Don’t forget, on top of our Adventures with Asperger’s, our Alex is still a kid. Sometimes, I guess that maybe it’s like having twins.) I realize that we both are winning and we can focus on moving forward to bigger and better things. I try to point out that it’s like a bisque, but he corrects me “Puree!”

I still think The Sneaky Chef is totally worth the purchase (Amazon has copies from <$2.00 + shipping to brand new…any which way, I think it's worth it) it was a great jumping off place for figuring out some small ways to enhance nutrition for the whole family.

(We have been getting various supplies through Amazon.com lately- yes, the Prime program is awesome! They do carry Earth's Best in 12 packs and Annie's Mac n' Cheese as a 6 pack- actually, with Prime, it winds up being less expensive than our chain supermarket and they are delivered right to our door. I'll post a link to my amazon store soon, where I'll have all of the things I have mentioned with links, to make things easier for everyone!)

xo
Bek

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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.

Wondertwinpowersactivate!

11 Sep

Wondertwinpowersactivate!

Originally uploaded by CleverGirlBek

Ok. So I’m finally starting to catch up on this end….

I finally received my Dexcom Seven STS (Fedex in Fort Myers was holding it hostage and didn’t bother to notify anyone…Seems the shipper forgot to put our unit #) which, and this is the short version, tests my glucose and gives a result every 5 minutes….

The sensor that samples the interstitial fluid is really tiny, although the applicator scared the crap out of me… I’m not big on the “insertion” devices when it comes to my pump infusion sets (sub-q catheters) as I’m a bit of a control freak- I don’t like my subcutaneous needles to go fast- I can’t handle the anticipation and the build up- I like to put them in slow and mellow…. It hurts less that way, at least for me…

Anyway, I have been wearing this thing for 2 weeks and I’m so surprised that each sensor did stay on (with strategic adhesive reinforcements and glad press and seal during showers to protect the adhesive) for the two sessions and they were not uncomfortable (occasionally the one in my belly felt like it was giving me an electrical zap…annoying, but very intermittent….

I am realizing that there is a huge learning curve for these things… As there was with my pump, which I am relearning right now as well to help get in better control…

The transmitter is manageable – fairly small- like a small disposable lighter. This week I have been wearing it in my arm (way less painful than insulin injection or pump infusion set insertion in the arm…pleasantly surprised…) as having it in my belly last week showed a whole bunch of “noise”…More likely than not the noise was from my purpley lightning bolts of fury (stretch marks from my giant preggo belly when I was carrying the big guy)…So this week I tried the arm…

The receiver is another story- not crazy about it. It’s freaking huge. I rigged a hook to it to hang it from my waistband as it came close to taking a dive a few times, and it is not waterproof. I did order a great little pouch from diabetesmall.com but I’m kind of digging being able to check the screen without opening the velcro flap…Still undecided….
This week the receiver keeps losing contact with the sensor and transmitter and it is making me nuts- a simple thing like having the transmitter in contact with my mattress or the receiver near my laptop seems to disrupt it.… So far I know not to rely on any of the numbers but the dexcom is helpful for following trends and hopefully adjusting my insulin dosages/basal rates, but I’m still testing with finger sticks like a maniac (around 10 times a day lately) and noticing some fairly wide differences in numbers…

The one thing I am really disappointed about, that I may return this and try for the Navigator, is that this doesn’t alert you to potentially dangerous trends (potential lows and highs) but it does alert you when you go above or below a certain point. I knew this going in, but I don’t think I realized how important that feature is in my world… As my hypoglycemia unawareness is pretty lousy and a low leaves me out of commission for up to 24 hours these days, and interstitial fluid readings are around 15-20 minutes behind finger sticks, I would like, at the very least, a higher “low” threshold… The other day I was registering as low at 90 but my fingerstick was 45. For me, that is too late and a little scary (especially in the middle of the night) and made me wonder if one of my reasons (I had a few) for wanting this bulky technology in my life is now invalid…

I mean, trends are going to save my life, but the way I look at it- the warning of lows, in advance, could save my kid’s life and my life and will give me back more time that I am losing from recovering from the highs and lows….

More on my Dexcom Seven experience over the next few weeks…. Still trying to figure it out and make a decision…

Belly.

19 Mar

Pumping.

Originally uploaded by CleverGirlBek

Ok. So it’s blurry.

But that little pink spot at the top, the actual catheter going in my belly part, is not supposed to have that dark shadowy stuff around it…

It was a bit of a bleeder… I nicked something going in, or shortly after, but didn’t discover it until the numbers were high again. Grrrrrr…. Making me a little nutso….Well, a little more than usual….

That is my lovely belly…. The episode of Jon & Kate Plus Eight where she has a tummy tuck was on a couple of weeks ago and I was surprised to find out that her belly, at it’s biggest, was only a few centimeters larger than mine (at my biggest)… She had 6 kiddos in there. I had one (and my kiddo was born at 33 weeks). I had polyhydramnios (too much amniotic fluid) and went from not showing that much to ginormous within a matter of 2 weeks. Yeah. Itchy, sore, and lumpy. Gorgeous. I’ll have to find a picture of my belly… I’m sure I have one somewhere…. So this belly you are seeing here is my belly now. It’s not attractive, but it’s mine. And everytime my little guy gives me a pat and mentions that he lived in there, I smile.

I won’t have a tummy tuck. No way. I have been through too many surgeries in my short time on this planet to do anything medical that is elective. So I’m working on getting into healthier shape so I can feel better and have more energy for my little guy, but we are still trying to figure out what is destroying my energy this much… Off to another doc tomorrow to review the ct scan of my trunk and some blood work… We shall see what we shall see….

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