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.

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Putting My Life in the Hands of Someone New

English: Cartoon of 1906. The physician has pl...

I don’t think my appointment will go like this, but with a new doctor you never know what night happen! Cartoon o

The time has finally come for my first appointment with my new rheumatologists. I’m not comfortable saying who it is, at this point at least, so for now I’ll just call it The Center.

I’m really pretty excited about the appointment. One of the things I hated about moving was leaving my old rheumatologist. I loved Dr. O. She was kind, compassionate, tough when I needed it, and actually responded to phone calls and emails when I had questioned or needed help. The consolation was I moving to a city with a well-known and highly regarded center for the treatment of Lupus and other autoimmune disorders. The Center has doctors that are considered some of the best. They are some of the leaders in research and treatment in the country — they publish papers, speak on panels, guest edit medical journals, in short these are the people who are cutting edge of treatment and research for autoimmune disorders like Lupus, RA, Sjorgern’s Syndrome and others. If I’ve got to find a new place to go for treatment this seemed like the place to go!

But, as anyone who’s ever gone to see a new doctor and been greeted with something like, “And what makes you think you’re sick?” you know it’s not easy to walk into a new doctor’s office. There’s always that bit of fear in the pit of your stomach. And that part of you that gets ready to defend yourself or for a fight.

It shouldn’t be that way. I know that. You know that. But that’s that the reality.

You would think that a place that specializes in people who other doctors have refused to believe (because, come on, if you have the kind of chronic illnesses that would bring you to the doors of a place like this, a doctor somewhere told you that it was all in your head) will be different. You’d think that they’ll be kind. You’d think that they’ll be believe you. But still, there’s that little bit of fear.

I’ve had the pages and pages of patient background forms to fill out for weeks. They’re sitting on my dresser looking at me. Even as I type they are staring me down. I just haven’t been able to finish them. I’ve done a few questions at a time, just not buckled down and do it all. I’m sure it’s all a mental thing.

Let’s face it, I’ve been on a somewhat rapid decline the last year. There is a very good chance there is another diagnosis in my future – the one I’ve always known would probably come eventually and half dread, half look forward to just so it stops hanging over my head. If anyone can jump into the mess that is me with suggestions that might actually help, it’s these people. Then why am I so scared?

It’s the fear of the unknown. It’s the idea of putting my life in the hands of someone new. Even if these are some of the best hands around, and I am incredibly lucky to be able to be a patient at The Clinic. I think this is just one of those times I need to have faith.