Double Whammy

I’m in the midst of what feels like of a double whammy – both my Sjorgern’s and Fibro are raging right now  – and of course I’m behind in EVERYTHING to begin with and getting further behind each minute. So I really haven’t felt up to posting.

A little girl in a sun bonnet circa 1973

When life was simple, the world was good and a kiss could make things all better.

I also haven’t been posting because frankly, I’m hurt and I’m angry and I’m sad and feeling completely worthless and defeated, and I really don’t feel it’s fair to subject you to that right now. I can’t even begin to put into words just how bad things are. I’m not just talking physically, I’m just talking all the way around. Frankly, it doesn’t even seem like it’s all real because this kind of stuff doesn’t happen in real life. Things are supposed to get better when you have faith and you have people who love you. Only I guess they don’t.

Any way. That’s why I’ve been posting pictures. Trying to put something happy where I should be. So today I offer-up something to the Throw Back Thursday Gods…going way back to the early 70’s…When things were simple, and a kiss could make things better.

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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.

Second Appointment: The Aftermath

I had my second appointment with my new rheumatologist last week (sorry it took so long to post an update, I’ve had my hands full with a sick kid). I’m glad to report that the appointment went much better than the first one. Then again there was so much room for improvement there wasn’t really anywhere to go but up.

One interesting change was that she had a 3rd year resident working with her this time, so I spent a long time talking to him. Then he relayed a lot of the information to her. I don’t know if that made a difference in how much she believed me, but it did change the communication dynamic.

I’m having trouble with my hip right now, and that dominated conversation. I find it very interesting when I brought up some topics they were ignored or shot down. When I said that I was in a lot of pain she looked completely dumbfounded. She honestly looked shocked and confused that I would be in pain when I was experiencing inflammation in my hip. She asked if I tried Ibuprofen and was I sure that didn’t make everything all better. Yeah, pretty sure.

Because of the medication I’m on they wanted to rule out any physical damage I had to go for X-rays right away. I was told repeatedly it was very important that I call back in 3 days to find out the results and see whether the doctor wanted me to go for an MRI. I called and just missed office hours on the 3rd day, in my defense I figured if they said it takes 3 days to get the results in their office then it was probably closer to 3 full days and then on the 3rd afternoon I had a sick kid incident. I called on the 4th day and found out the X-ray was normal, but the nurse had to go looking for the results and had no idea if the doctor saw it or what I was supposed to do next. She said she would talk to the doctor and call me back. That was last week. I haven’t heard back from them.

So yes, things went better. There are still things that bother me. I’m flabbergasted that a doctor with her reputation seems so flummoxed by the idea that I’m so troubled by fatigue and pain. I could understand if they weren’t two of the most common symptoms of all  the stuff I’ve been diagnosed with, but I would have to guess a doctor with years of experience with these illnesses would not only expect to hear it but would be prepared to discuss it!

I’m not 100% sure that I want to stay with this doctor. I may try one more appointment. Or at least see what happens with the follow-up from the hip. But I’m curious to hear what other folks have experienced. Have you decided to change doctors because you didn’t get along with them? Did you break up with a doctor? How did you make the decision? I’d love to hear about your experiences in the comments section below.