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Friday, August 20, 2010

So Close

4:00 a.m. and I can't sleep. Actually, I have been asleep for about 4.5 hours and that seems to be all I can get in. My mind is all over the place. So much has been happening and I have to admit that I am quite anxious.

I am so very close to getting answers that I have been looking for. For years. At the same time, even though I have been reassured that this will not be the case, I am afraid of no answers, again, at all. I am stuffing anger and frustration down like an awful meal at a very kind friends house. Trying to ignore how bad it tastes and can feel it about to erupt at any time. I am waiting. And Lord knows, I suck at that.

I have been feeling awful, crappy, honestly for a very long time. The worst of it being the past eight plus months. If it were just me, if nobody depended on me. If I wasn't a mother and a wife, among other things, it would be easier. But I, like most people, hate to disappoint. I hate to deliver any less than what is expected of me. So feeling like this, puts me in an awful position and often makes me feel much frustration. That smile on my face...not sure, some days, how I get it there. Wait. I do. My kids. The absolute love for my three beautiful children. I don't want to nor can they afford for me to fail them.

For the past three weeks I have been on this incredible ride. All of the sudden there is this acute awareness that there has been and is something really going on with me. My body is being tested at constantly changes levels of steroids. With this has been the reality that I have to really check in. Get over the fear that I will be, once again, given the shoulder shrug as to what is going on with me. There has been this chatter...with nothing coming of it, of a couple of autoimmune diseases. But, hey, I know that my doc is dealing with this with another patient. If it was to be true, there is no way he'd miss it right? Especially when he questioned it so many months ago. Right? I mean, really, if there were suspicion, he would have addressed it, right. Wrong.

I was told, at first, that the exhaustion was due to the "virus" (they think) that I had over the winter. You know, no biggie, a little fluid around the heart and lungs. A month or so later, when I still was struggling greatly, the answer was that I was probably not moving around as much because of the unexplained whatever (they never had an answer) from the month or so prior. Really? Because I have three kids (that's the least of my crazy life). Not moving? Enough? I wish I would have told him to kiss my ASS! But, once again, I did not push. He's the doc, right? He has my charts, labs, etc. He knows. Right...

Just so we are clear, I know that doctors are NOT magicians or miracle workers. For the most part, I love my practice. I trust them with my children's health. But, there have been some changes there. Some not so desirable. I am not the only one with this complaint. I will also share that at a very high point of frustration, about a month or so ago, I called the office and expressed this. I was angry. They agreed that my concerns were brushed off where they shouldn't have been. They told me that I should have called back in and expressed this sooner. I wanted to let them know that I was beginning to feel like a complainer, that I wasn't being taken seriously because I was an overweight, busy mom. They said, "We know our frequent flyer's, our complainers. You are not now or have ever been one." There was admission that the docs have about 15 minutes per patient and unfortunately, some get lost in the shuffle. Assumptions are made. For me, this is a really bad combination. If I even begin to sense that the docs think it is no big deal, I back off. I am afraid of sounding like, well, a complainer. I know that this is my fault. However, I did an awful lot of pushing this year. Which is very hard for me to do. That is how bad I was feeling.

I decided to take matters into my own hands. I am glad I did. Can't imagine what I would be feeling like right now if I didn't. After complaining, a lot, of all over joint pain, I was given a script for Prednisone. In that same visit, after insisting to them that they let me pee in a cup (they were convinced, again, that my flank pain was muscle related. I knew they were wrong), they came back and said, indeed, the infection was back and that I had to hold off on the Prednisone until the kidney infection was clear. Fine. That was in June. I waited. Kidney infections weren't getting better. Nobody had answers. Surprise. I was so sick of being sick. I called both my primary and nephrologist (as though I was a hostile kidnapper or something) and said, "I am taking the Prednisone (having very little faith that anything would actually come of it). I don't care any more. I can't go on like this." And so I did. Thank God I did.

Everything has gone from a slow moving pace to this frantic, "OMG! We need to get her fixed!" Seriously though. Whatever the outcome. Whichever category I fall into, I am alright with that. You see...I will have a PLAN! That is the part that is killing me. Just tell me what I am dealing with and lets move on. Move forward. I don't like this gear I am in and have grown quite restless with the scenery.

With a few exceptions, I am not really all that bummed with what I am most likely facing. The reality is that I have had this for what seems like forever. The best part is about to begin. The part where I don't have to feel like nobody gets it. I can and will allow myself rest, if needed, where needed and not feel guilty or weak about it. When I wake in the morning and feel that familiar feeling of, "I don't think I can do this today", I will be alright with that. I will do what I have always done. Get up and do it. It will be different because there won't be this helpless feeling that I usually keep stuffed inside. I will have a PLAN. Answers. Freaking ANSWERS! It won't be an excuse for me to expect any less of myself (if you ask around, the most common complaint is that I expect too much of myself). I know that I will test my limits. But I will understand those limits if they are not what I hoped or expected them to be. There are so many other diseases, illnesses out there. I'll take one of these.

I got an amazing e-mail from a friend. She has Lupus. She wrote to me of her story, her battle for a diagnosis and the course she has been on since. I admire her. She so much looks at this as I do. She wrote about the day she was diagnosed. She couldn't help but smile when the news was given to her that she had Lupus. I get that. I have been there (with other issues). I know that feeling. You can't help but smile. For me, that smile is a mixture of, "YES! ANSWERS! Somebody gets it, they believe me, I am NOT crazy!". And of course, to those who doubted..."IN YO FACE!!" And ultimately, knowing that a plan was soon to follow. A better life was to begin.

So the anxiety, is more because of the waiting. Also because, I want to inform myself, but am still struggling with that "what if they can't find anything". I don't like starting fires where they aren't needed. So as much as I think I have pulled my head out of the sand, I keep finding myself wanting to stick it back in. I have to keep reminding myself that, as the doctors keep putting it, "The red flags are up and flying!". I have to have faith. That's a tough one. Because I am exhausted and I don't know what's next if there is nothing there to be found. Understand that I have been dealing with unexplained medical issues for nearly 16 years. Not saying that they are all related, though, I suppose they could be. But so many unexplained things. So much head scratching and guessing. With no answers. This is where my fear stems from.

So, as crazy as it is, my fear does not lay in the final diagnosis, it lies in not having one at all. I am not hoping for illness. I am there. Just answers and a plan. So I can be all I am needed to be.


  1. I know you are Danielle. Thank you. I'm here for you too :)