I’m looking at the tag I assigned to all my diabetes posts, the tongue in cheek “ode to diabetes.” And I wrote an Am I Sick post last spring, which really reflects the way I’ve always felt about this “disease.” It’s there, I’ve lived with a broken pancreas since I was a baby, there are times it sucks, it costs tons of money and I can waste hours a week feeling crappy from highs and lows. But in the end it’s just a pain in the ass that needs to be accepted, and dealt with . Like an annoying, loud houseguest you can gripe about, make fun of and then move on with the important parts of your life.
I think about the day to day of it, which is very real but certainly bearable. But I don’t usually think about the future. Sure the fear’s there, niggling, I always know it’ll probably affect my life expectancy, I know it but I don’t know it. I think that’s the healthy way to live, and it’s easy to get caught up in the worries about blood sugar testing and carb counting and blah, blah, blah time-consuming crap you do each day, without thinking about the future. Until you get a test result that forces you to face the fact that yeah, you really are sick.
So…I went to the endo last week.
My serum creatinine level (measure of kidney function) is really the only thing I care about when I see my endo. My A1C is always good (it was 5.9 this time), and my cholesterol/triglycerides have always been excellent. But nephropathy is the complication I think diabetics are most scared about, because the consequences, when it progresses, are the most devastating, and with the exception of heart failure, end stage renal disease is the most dangerous. The idea of dialysis terrifies me (how can I manage the 4 weekly dialysis appointments, and associated fatigue, with a child?), especially since most diabetics don’t last 2 years while being dialyzed.
I was diagnosed with kidney disease ten years ago, and since then I’ve managed to keep my creatinine stable at 1.6. It’s the only reason we tried so hard to adopt, because we thought I actually might stay stable for many more years. I’ve been extremely lucky. Until last week’s blood test.
My creatinine has suddenly shot up to 1.94. And I’m terrified. Once things get above a certain threshhold there’s more and more stress on the kidneys, and things typically start to progress quickly. Now, when my life is suddenly exactly where I want it to be, it looks like it’s probably only 2-5 years before it changes drastically.
(Sidenote: I love how the doctor ended with a cheery “Enjoy the holiday season!” Like, “You’re going to need dialysis soon, and probably die shortly after that, but have a Merry Christmas because you won’t have too many more!”)
My first thought is that this isn’t fair to Anna–we should never have agreed to adopt her–and it isn’t fair to my husband. All weekend I’ve been watching them together, Jer and Anna, and my heart implodes every time I hear her laugh. And that’s when the crazy thoughts set in. If I left her now, sure she’d miss me for awhile, but nowhere near as much as she would if I left her when she was five or six. She wouldn’t remember having known me, all I’d be is pictures and stories. Jer could meet someone else, a woman he didn’t have to take care of. That’s where my mind has gone repeatedly since I opened the envelope from my doctor Saturday afternoon. That it’d be better for everyone in the long run if I wasn’t here.
I mean, don’t call the police, I won’t do anything. But the thought is there, behind everything. Because I’m so scared of how this might destroy the people I love best in the world.
I’ll be seeing my nephrologist next week, scheduling more tests. Trying not to think any more than I have to. As Crystal always says, it is what it is. You look at what you’re given, acknowledge it and find a way to move on. So that’s what I’m doing, acknowledging and figuring out what needs to be done. In the meantime, I’m not usually the kind of person who asks for prayers, but…for Anna’s sake…I’d truly appreciate a few.
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You’ll be in my thoughts until we hear from your nephrologist, E. Keep us posted.
I love you, Elizabeth. Will be calling soon.
Hang tough, doll. One day at a time.
((((HUGS))))
xoxoxo
Elizabeth, you did the right thing by adopting Anna. You are a wonderful mother. Any mother at any time can have something happen to them with no warning whatsoever. At least with this, you know what’s going on and you can fight it and take the best possible care of yourself. Anna’s lucky to have you. And you are lucky to have her.
Wow. I just blogged in a similar vein recently. My thoughts and prayers are with you and I hope the appointment goes well.
A lot of us care about you. Hang in there.
EJ, you are truly an amazing person who Anna is extremely fortunate to have as her mother. And she will always know that. No matter what. I am sending you as much love and hugs as I can through the web!!!! You have lots of people who care about you and are here for you. You are in my prayers and I hope for only the best for you.
I’m so sorry you have to go through this stress. As Bob said, so many of us care about you Elizabeth. Vent away on us – let it out. We will do our best to comfort you. I hope the upcoming doctor appointments prove to be encouraging.
You are in my thoughts, and I’m sending happy vibes your way. For whatever that’s worth.
Kim
OK…the “Enjoy the holiday season” bit made me chuckle and your interpretation of it.
Jesus, this sucks! I am sorry. I cannot even begin to know the worries that are weighing you down right now Elizabeth. Know we are all with you through this and we love you. You are in my thoughts.
I will definitely be praying for you. You have more people who care about you than you may realize.
Of course you should have Anna. You’re her mother.
Sending good thoughts and some prayers your way.
Hugs, Elizabeth, and prayers. My brother was diagnosed with diabetes when he was 8 years old–he’ll be 67 next month. Try not to worry. I know that’s impossible, but worry really is a waste of mental energy–and as writers (or at least I find for me as a writer) our imaginations are just too good. I always imagine the worst. And yeah, Merry Christmas. You’ve got to wonder about doctors sometimes.
I’m sorry
But nothing would be easier if you weren’t here.
My niece is 9 and a Type 1 Diabetic. It’s hard on her a lot of the time and it makes me sad to think that one day she might have the same thoughts you are having right now. I know this is the reality of living with diabetes but I hate to see anyone feeling what you are feeling right now. But I applaud you for putting it out there like that. *HUGS*
I have no words because this is my deepest fear as a type 1 diabetic. I will continue to pray for you and your family as you go through this time.
Oh honey, I’m so sorry you are feeling so scared. But doctors don’t know everything. You have a wonderful husband and beautiful daughter and I know you will fight like hell to stay with them. I honestly believe your numbers can go back down again – they have to with all of us out here pulling for you and sending positive thoughts your way. Love you!!
Ugh. I was in a similar boat this week. a1c drifting up a bit to 5.7 but not yet at alarm level. Cholesterol and trigs great. But liver function…over the last couple of months, it has been maybe 5% higher than then upper range, for both AST and ALT. This week, o e was 4x the upper limit and the otherbwas 10x. A big jump September.
On the plus side, I finally finished Pieces of My Sisters Life, and totally loved it. I also discovered we went to the same school for undergrad, which I thinks explains a few things.
Anyway, if you fix yours, i’ll fix mine, so you can keep your kid and i’ll look into getting one. Deal?
Hmmm. No more iPad commenting from bed from now on. That post was missing some important words….
[...] (and now that I’ve finished one of her novels, favorite authors as well) Elizabeth Arnold, at Pieces of My Life. It was titled simply “Scared” and as soon as I saw that in my queue, it knew it was [...]
I just read your post…and wow. First of all, consider this a long-distance hug from NYC. Second of all, you have Anna now because you were MEANT to be her mother, no matter what! Third of all (does that even make sense?), when you say “it is what it is”….what this IS is a time of uncertainty. Lab results can be inaccurate. You could be stressed. Who knows what will happen in the next few years? Maybe it was an abnormality, and you can kiss the dialysis dread goodbye and get back to playing with Anna.
Words are often inadequate comfort in times like this, but I hope you are feeling a little more peace of mind no matter what. And I will definitely be praying for you and your doc visits next week!
(((((HUGS)))) I will definitely keep you, Anna and Jer in my prayers…every night.
Prayers!! being sent up from california! …like many of the posts above you ARE Anna’s mommy and things would not have come to fruition if that was not meant to be
…we all love you so much! …wishing I could give you a great big huge (HUG)…one day at a time! xoxo
Thinking of you, and all of your family.
I’m sorry
But nothing would be easier if you weren’t here. My niece is 9 and a Type 1 Diabetic. It’s hard on her a lot of the time and it makes me sad to think that one day she might have the same thoughts you are having right now. I know this is the reality of living with diabetes but I hate to see anyone feeling what you are feeling right now. But I applaud you for putting it out there like that. *HUGS*
Thinking of you and sending positive thoughts and vibes your way!! And hugs 2!
I just jumped in today and read what you are living through. Anxious to know how you are, neighbor. My prayers and concerns are with you three. Prayer changes things. Remember how many people care about you. You are where you should be with Anna and Jer.
Elizabeth – shame on me for being so behind and out of the loop on stuff. I’m sorry.
I zipped over here when I saw your e-mail to see what was going on. What a scary thing to be facing. I love you bunches and hope for the best. I too will be preying for all of you.