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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Going For the Second Appointment

You may remember me talking about my doctor’s appointment in the fall with one of the best rheumatologists in the area I just moved to. Not only that, she and the clinic are highly regarded and respected across the country. But just like any time I see a new doctor, I was anxious. Well it turned out I had an awful appointment.

She hadn’t read my whole file sent by my old doctor, it was too long. She asked me questions about what was in the file, then questioned my responses. She actually said the one thing a medical professional can say to upset me more than anything else, “What makes you think you have that?” (The response, because a Dr diagnosed it.) I really felt like I was defending myself the entire time I was in with her.

Then there was the whole pain thing. She wanted me to go a pain clinic and didn’t seem to understand that I was going to be losing my health insurance for several months And couldn’t get into a clinic before my insurance ran out. And because there are still problems I still haven’t gone because I can’t pay for it out of pocket. I also have no way of getting there if I could afford to go. Her suggestion when I called to say I couldn’t get an appointment? She told me the maximum over the counter Tylenol to take a day, get an appointment as soon as you can, good luck. (It felt like it was the first time in a long time someone accused me of being a drug addict – other doctor’s I’d seen, including those in the ER, were worried that I was under medicated.) That was September. I stretched the pain meds out I had as long as I could, but there have been sleepless nights, days I wanted to scream, and times where I literally pulled my hair out.

Now it’s time to go back. I’ve debated since I walked out of the office whether I should go back. My husband sided on find someone else. My family and friends said I should go back…she is one of the best after all. They had good points, she could have been having a bad day, or maybe she doesn’t have a great beside manner. I did some digging on-line and she has gotten rave reviews for her care and going above and beyond for patients.

Was it me? Did I somehow misinterpret the whole thing? Was she having a bad day? Was she more all business because it was the first appointment? Should I be this nervous and upset about even going to an appointment?

If I’m thinking that I’m getting to the point where I can’t work any more, I need to have a doctor on my side. If she’s not going to be on my side I need to find someone who is. I really don’t have the time or energy to go through this dance a bunch of times. I have certainly have no “God Complex” kind of thing when it comes to doctors – they are just humans and capable of making mistakes as the rest of us.

So I turn to you dear readers.  My husband can’t go to the appointment with me. My Dad is going to drive me and it sounds like my step-mother who is a nurse may be coming so I’ll ask if she’d be comfortable coming in with me if she does. But what do you think? Suggestions? Words of encouragement? Advice?

I know to take my list of questions, I always have a notebook with me at appointments. I’ve been tracking symptoms through an app on my phone. So I know how to go to the appointment. I just need to know how to feel better and more confident about going.

Friday’s Guilty Pleasure for 11/22/2013

This week’s Guilt Pleasure post is co-written by my 15 year-old daughter Kay. I’m letting you read it just as she wrote (ok, I corrected some spelling). Enjoy…

The Mark 2 fibreglass (Tom Yardley-Jones) Tard...

Doctor Who is one of my guilty pleasures. It’s a British sci-fi show about an alien (Time Lord) named the Doctor and his travels through time and space with his companions. The show turns 50 on Saturday the 23rd of November, making it the oldest sci-fi show ever. Over the years, the Doctor has regenerated (a clever trick by the writers so they can replace the actor) eleven times, meaning eleven actors have played the part, and now, in the Anniversary special three of them and Queen Elizabeth.

The show is very confusing, and you never know what to expect, like how the Doctor was at a picnic next to a lake with his wife, while his best friend was pregnant with his wife, when his wife in a space suit came out of the lake and killed him (spoilers), or how one of the companions named their daughter after their daughter after she grew up with her daughter… but the surprises are definitely worthy of your time. The more you watch it, the more addicted to it you become. When you do fall in love with it, you join a world-wide community that is open and happy to meet others in their fandom. We’re called Whovians.

Now, I’ve been suggested to say the cost. The only costs are the money to get BBC in what ever country you live in, or Netflix, which has every season of the show. The other cost is your time, which will often get devoted to Doctor Who. Then, if you do get addicted to show, you will most likely went to buy the shirts, mugs, posters, toys, and DVDs. Trust me. I’ve either bought or received two Doctor Who shirts, one mug, one poster, two sonic screwdrivers (the Doctor’s tool that can do anything ((except wood), two TARDIS (his spaceship that looks like a British Police Box that is bigger on the inside) blue nail polish, and the diary of one of the characters.

Thanks Kay! Great job!! I’d just like to add that this weekend is filled with all kinds of Doctor Who specials, shows and on-line activities. Check out things like the page visually depicting the social media around the special and offering a few (very short) sneak peaks. The BBC YouTube channel where they’ll be updating things with videos from the events going on in the UK. And don’t miss the world-wide simulcast of the anniversary special staring at 7:50 PM in the UK and 2:50 PM on the East Coast of the US. Enjoy!

By the way, if a strange man with a box that’s bluer than blue, ancient and new, and much bigger on the inside asks where you want to go in all of time and space, go! Don’t walk, RUN!

If you have an idea for next week’s Guilty Pleasure – or if you would like to be the special Guest Blogger and write next week’s Guilty Pleasure post, drop me a line here! I would LOVE to hear your ideas. Especially all you Spoonies and Chronic Babes – what are the those little guilty pleasures that make the bad days a little better? Let’s share and help each other!