Thursday, March 12, 2015

The Sound of Silence

A rough several months have gone by without a post from me. I think I should probably explain why I don't write very often. You see, I have always hated complaining. For me, it's kind of like that saying, "If you don't have something nice to say, then don't say anything at all." While I do know that saying is not intended for this purpose, it still feels appropriate to me. When I'm having a flareup or things are really difficult and there are many challenging things happening, I don't want to keep writing about the negatives and how difficult things are.  So I usually try to write posts that are upbeat or uplifting in someway. Even if it was a difficult time, I try to find the positive in the situation or else I will try to write about something that I think is humorous. So when you don't hear from me for a while, it usually means that I'm not doing too well, and I'm having a difficult time finding something positive to write about.

The truth is, though, the last couple of months have been extremely difficult. Things of been crazy with Miracle Man, Little Miss, Chub Chub, and myself.

Miracle man is doing well in school in a lot of ways. He has made huge gains in several areas, especially with his speech. But we are still struggling with a lot of things as well. The good news is we are finally getting a chance to go to the Epilepsy Monitoring Unit at the local hospital. This is something that we have wanted to do for at least a year, and now we finally get to go.

The major catalyst for this opportunity is that Miracle Man had an episode while he was at school recently. He was sitting down at the table and the teacher's assistant was talking to him, but he wasn't responding. When she looked at him, his eyes were rolling into the back of his head. Next thing she knew, he had fallen off his chair and bumped his chin. This was the first type of seizure that we have seen where he didn't hit his head hard before having one. So, on the one hand, it's scarier and more frustrating that he had one without bumping his head first. But on the other hand, now we get to finally go to the Epilepsy Monitoring Unit and hopefully get at least one diagnosis. He is 3 and a half years old and he still does not have any diagnosis other than developmental delay, even though every one of his doctors believes he has several things going on. Having at least one diagnosis would be great!

We will be doing this in a few months. I do not have the appointment scheduled yet. I have to wait for them to call me. But, when we do get to go, this is how it works: I will take Miracle Man to the hospital and he and I will camp out there in the room. The entire time we are there, he will be hooked up to electrodes to run a long-term EEG. We will stay there for up to as long as a week. Hopefully we will get some concrete data to prove that he is having seizures during that week.

I am really glad that this whole experience will be in a month or two, and not right now. For those of you who don't know me well, or don't follow me on Facebook, my daughter was just in the hospital for a week. She had a pretty severe kidney infection. We are extremely grateful that she has healed well and is doing much better. She has to go to the urologist next week to have some testing done, and we are hoping that everything comes back normal.

In any case, it was a terribly difficult time on our family while she was in the hospital. It will be much easier the next time I am at the hospital with one of our children for a lengthy time because this time it will be planned. We will know far in advance that I will not be around at home to help out with all of the other kids and pets!

All of the stress and extra work over the past several months has really taken a toll on me. My body is barely making it through each day. I am extremely fatigued at this point. In fact, This week I have been struggling with getting out of bed pretty much at all. One morning, Prince Charming had to get everybody out the door without any of my help.  I simply couldn't get out of bed.

And my pain level has been high as well. Everything hurts. My legs, my ankles, my feet, my hips, my back, my arms, my shoulders, my hands, everything.

When I was in graduate school, I had developed carpal tunnel syndrome. I had to wear braces on my wrists for quite some time. But once I was out of school, everything resolved on it's own. I wasn't typing like a fiend anymore, so my wriss and forearms were able to relax. I haven't had this in a very long time. It's been about 15 years, actually. But, now it seems to be back with a vengeance. My wrists and forearms are so bad right now, I'm having trouble holding anything even as heavy as my phone. I am also having trouble writing, twisting knobs, grabbing at things, and of course typing. This entire post has been dictated so that I wouldn't have to type. Buckling car seats are a particular challenge for me. I try to not have to go anywhere if it means I will have to buckle the boys into their car seats. It is really annoying, quite frankly.

So there's a little snippet of the difficulties, but I do have another positive! Over the last few weeks, I have found a whole community of people out there online who are suffering through fibromyalgia, just like me. I am making friends and connections through Facebook and other social media outlets. This has been extremely helpful to me. Knowing that I am not alone is just  huge. And reading my very own thoughts in other people's Facebook posts has been affirming. I cannot believe I didn't search for these forums before. But, I am extremely grateful that I have them now! And, by opening up to people, I have learned that there are people that I actually know who have this illness as well. I am looking forward to learning a lot from people who have been going through it longer than I have.

That's all for today. No more energy, no more time. I hope you're all having a good week! 😉

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