Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Tuesday, October 31, 2006

I'm Not a Believer (Not Yet Anyways)

Today, the pediatric endocrinologist from Children’s Hospital called me at work. ( I thought Gracie was being referred to the IDC, but I was wrong, she is being referred to the Children’s Hospital.) We talked some……and really, she is on a different plane of belief than I am. I’m not of the believing species yet. I don’t/can’t/won’t believe this, not yet.

Gracie’s blood sugar this morning was 91. Woohooo! After a full day of 150’s, 160’s and then rounding down late afternoon and evening to 138 and 107, I was THRILLED to wake up to a nice healthy 91.

The doctor discussed why Gracie had ketones (and not talking just a little, we are talking a WHOLE HECKA BUNCHA LOTTA ketones) in such a high quantity and also discussed Gracie’s diet some with me. The doctor believes that perhaps because we eat so few simple carbs (we don’t even drink milk, we do unsweetened soy milk which is 4g carb per 8 oz, but that is another post) this could explain why Gracie is building up ketones yet keeping lower sugars. See, the sugars and amount of ketones don’t jive which led to this discussion. It makes sense as really the only simple carbs we routinely eat are bananas and apples and other fruits, which other than the bananas are fairly high in fiber reducing absorption rates. Also, typically we eat our bananas with peanut butter. Funny, because Gracie had these elevated sugars coming off a day with a babysitter where they consumed pretty large amounts of juice (finished off two bottles when normally two bottles (32 oz) will last over a week). She said that if Gracie continues to have higher ketones but more normal blood sugars, we may have to start her on a very small amount of lantus to help reduce those ketones and keep even her smaller spikes down.

The things is, and forgive me as I know this entry is not well composed, is I haven’t yet accepted Gracie as a diabetic. I’m holding out that maybe that isn’t what it is. The doctors are already treating it as though it were diabetes, and it freaks me the hell out. I am okay when I can say, hey maybe it isn’t this, but when the doctor calls and starts talking about getting her prescriptions for insulin and stuff ready for when she needs to start the insulin and eventually starting her on a pump, I just can’t take it, because I’m not yet there. I’m not yet a believer.

Add to this all, my son’s IEP process is now at it’s beginning stages. I’m poised to tell the social worker sometime today (when she calls me back) not to expect me to sign a medical records release for the school, but I’ll be happy to provide them with any information they request or also very happy to accommodate them with a conference call to my doctor (with me included) if they need information that they need to get from the doctor they can’t have me get for them. I’m not very good at telling people no, but I’m also not about to give an educational institution full access to records that they are not fully qualified to process (if they were doctors, perhaps, but social workers, no, they don’t need his labs, they don’t need every iota of conversation that I’ve had with Sandis’s doctors). I’m a little stressed about this. I feel it is the right thing, but I hate stepping out of the box of what they hope for and I hate telling people no. I guess I will use this as a personal opportunity to build up my NO skills. Ha ha, you would think I would have gotten enough of that learning to say NO to drugs in public school……!!!

The list of things I need to do is getting bigger. I’m dreading the next walk up to HR to request yet ANOTHER FMLA form, this time for Gracie, and explaining how bodily misfortune and dysfunction has once again fallen on the family of three (My peanut, pumpkin, and me the mommy of multiple misfortunes…)

I need to write this more, so that I feel it, I believe it, and I carry it high so others see this in me instead of my troubles right now. I am NOT defined by my problems. I am NOT defined by my health or how my health is perceived by others. I have been given, and my children have been given, wondrous intelligent invigorating souls begging to be seen by you, by me, by everyone who comes into contact with them. Their diagnosis are only parts of their greater mold, the mold of their total person. They/we are awesome, they/we are God’s creatures, they/we are not mistakes, they/we are exactly how God made them/us. And that is truly truly perfect.

Now I’m going to go conquer the world, or just be the best damn advocate my children could ever have hoped for. Seeya! Oh, and happy Halloween!


Anonymous said...

Dear God,
Please protect this family, keep them strong and show them your love. Give Sarah the strength she needs and give her doctors the wisdom to do the right things. Bless her children, Lord, and light their way. We trust you and know that you will never give us more than we can handle, that we will be stronger for our struggles. Keep her children safe and healthy. Pour out your blessings in the lives of this family. In Jesus name, Amen.

Scott K. Johnson said...

You have so much going on - blogging & talking about it is a real good way to help work through everything.

Though I imagine it's all going in warp speed right now.

We're here for whatever support we can give.