Down the Chronic Illness Rabbit Hole

I feel awful about not keeping up with things here on my blog. I decided late last summer that I would be posting at least twice a week and that I would be talking about things that would be helpful and hopeful to other people with chronic illness. Then winter rolled around and I started down the Chronic Illness Rabbit Hole.

You know what I mean, when all the little tricks you have to pull yourself out of a flare or pick yourself up don’t just do not work, they seem to make things worse. The times when you feel like you’ve finally reached the bottom and feel just as awful as you could ever feel, only to wake-up the next day and discover a whole new level horrible. I feel like I’ve been traveling down this particular rabbit hole for months. In reality I skirted the edge for a while, started to fall and clawed my way out a few times only to have the ground give way underneath me again. But as I’m sure anyone who’s been in the hole will agree, it doesn’t matter how far you’ve fallen or for how long, it’s always too long.

Logic would say I should call my doctor. The one who told me it was vitally important to immediately go get my hip x-rayed, then didn’t follow-up for more tests after getting the results for 3 weeks. Which was more than 2 weeks ago and I’m still waiting to find out details about the additional tests. (I’m guessing it’s nothing important – and since it’s gotten better, and worse and better again it really might be inflammation/flare like I tried to tell them.) If you’ve read about my experiences with the new doctor you know I don’t have a great deal of trust in her or her office, this latest…hiccup…fiasco…call it what you will…is not helping.

She hasn’t seemed at all interested in anything to do with my Fibro. She hasn’t really asked about my quality of life or interested in how I’m doing in a total sense. I did fill out a questionnaire at my last visit (granted it was my 2nd with her practice and we have no background or relationship yet) that asked some quality of life and general wellbeing questions, but she never followed-up on them. Her intern didn’t follow-up on them. Why have me go through the exercise of filling out a whole page of questions about ability to walk up and down stairs, fatigue, etc. and then not even look at them?

So why should I call? I’m not having specific or steady inflammation in any particular joint (though there is some wide-spread inflammation), and thankfully I’m not in a ton of pain. I’m not having specific symptoms that she’s found acceptable in the two conversations we’ve had. I just feel like hell. 24 hours a day. No energy. No strength. Just hell.

This isn’t really about her or her office. Maybe it should be. Maybe I should call. But this is more about that nasty little hole you get sucked into when your illness rages on and on and on.

Part of you tries to rage against it. But we know that doesn’t necessarily make things any better — more often than not it makes things worse. Part of you wants to crawl deep inside that hole and hide until you feel better — but not doing anything doesn’t help in the long run either, it just makes it harder to crawl out of the hole. You get up each day and do the best you can to survive and try to figure out how to get out of the hole.

Here I am, not the farthest down I’ve ever been, but definitely further down than I’d like to be. All I can say is that I’m doing the best I can. My focus has to be taking care of the day-to-day things like getting my kids to school  and making sure they’re fed each day and in bed at night. As much as I want to reach out, to be part of the world, sharing with others and helping others going through the same things, I really need to spend my energy (or my spoons if your familiar with the term) on taking care of the absolute our needs and try not to feel too guilty about all the things not getting done.

I’m interested in hearing from you. What do you do when you find yourself going down the Chronic Illness Rabbit Hole? Share your thoughts below in the comments.

It’s all My Fault So Blame the Weather on Me

An Adirondack chair under a grape arbor in the snow

Ice, snow and freezing temperatures are all part of my birthday tradition.

The weather is really awful for most of the U.S. today, and I take full responsibility for it. If you go back through history you’ll see a long line of snow and ice storms and mind numbing cold temperatures on January 28th (plus or minus about 5 days). I can confirm this phenomenon has gone on since the 1970’s. How do I know? It’s my birthday.

I was born during a deep freeze, just after a snow storm. As a kid nearly every one of my birthday parties was rescheduled at least once because of the weather. One party wasn’t held until March because a pipe burst at the restaurant and there was major damage.

Now, I know what you’re thinking, “But it’s the end of January ~ of course the weather’s going to be bad!” You have a point. But, if we were to schedule a birthday get-together two weeks after my actual birthday, the weather will be bad that day too. I have years of facts to back me up on this.

So I apologize for any inconvenience I’ve caused. Trust me, I would put an end to this craziness if I could. The best I can do is hope you all stay safe and warm.

On a slightly related note, one year ago I said I was looking at making some changes. Then things changed a hell of a lot more than I planned. They aren’t done yet, but I think I’ve got a little better idea where they’re going. Thanks to all of those who’ve hung around over the last year. Stick around to see what happens next.

This Blog is Interrupted by NaNoWriMo

Hey Gang! Sorry I haven’t been posting. I’ve been trying to write for National Novel Writing Month. I have less than 5,000 words to go and a little over 24 hours. I think I can do it. So wish me luck and please stand by while I try to get this done. Well reach 50,000 words I don’t think the story will be done but I’ll be close. I’ll let you know what happens!

Once more into the breech!

 

UPDATE: I wrote 4237 words today! A little over 2 thousand of those were before I did the quick blog post. I have 2432 words left to do! For the first time in a couple of weeks I’m actually going to go to bed before 2 AM and get some sleep! Thanks for all patients, the good wishes and positive thoughts everyone!

A Total Loss

A Total Loss

So the car really is a total loss. Since it’s more than 10 years old it’s not really worth a whole lot. This is definitely expense we don’t need right now. With only one of us with a fulltime job and very little coming in it’s going to be next to impossible to find a car we can afford. The kicker is, we really need a pretty good car since Hubby is driving an hour each way to work, over a mountain. A drive that’s going to be next to impossible once winter hits in the wrong vehicle. Wish us luck…I’ll be over in the corner whimpering into the Trader’s Guide if you need me.

***I know I owe you posts for the award nominations, I promise they’re in the works!***