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.

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.

 

 

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.

I Wrote A Novel – A NaNoWriMo Update

I’m still finding it hard to believe, but I actually did it, I wrote a novel thanks to the National Novel Writing Month! I first talked about taking on my third attempt at NaNoWriMo as a Guilty Pleasure. I also skipped a Guilty Pleasure at the end of November so I could concentrate on writing because I was really behind. I am thrilled to say not only did I reach the 50,000 word goal (50,218 to be exact), I actually finished it!

I have had so many story ideas in my head since I was a teenager that just a two or three sentence description of each fills most of a notebook. Each one has been updated and edited several time into a pretty concise and organized story. Only one has been written out beginning to end, and that didn’t happen until last month. I realized, thanks to something one of the NaNoWriMo mentors wrote, I’ve been afraid of writing the stories down. As long as they’re in my head, they’re kind of perfect. I can’t mess them up and people can’t judge or hate them. But, I also can’t share them and there are a few I really do want to share.

National Novel Writing Month 2013 Winner Graphic

National Novel Writing Month 2013 Winner Graphic

The novel from November is far from perfect. It was a kind of strange idea and one of the few I didn’t have completely finished before I started – one of the rules for NaNoWriMo is that you have to start the physical writing from scratch and I have a habit of writing bits of dialogue here and there that I want to keep and not have to toss them out. But this is the first story I let escape on to the page, and that makes it pretty special.

Right now, the novel and I are taking a break. I ended up writing over 7000 words of fiction with no idea of where exactly I was going in 48 hours at the end. That was a little much, especially for someone of the chronically ill persuasion. I need a break before I go back and start rewriting and editing, and make no mistake it will need lots of both. And that’s ok – it was something else I was afraid of, thinking I needed to be perfect in the first draft. But it doesn’t need to be perfect the first draft, and frankly there will probably be something in the final draft that I won’t think is perfect and that’s ok too. What’s important is telling the stories!

So keep an eye out. I’ll be giving updates periodically. I don’t think I’m going to go so far as to turn it into an actual book (though I must admit it is tempting to actually see it looking like book) but I’m going to do something with it if for no other reason than to push myself that little bit further and let other people read it. At the very least it will end up as a free online read somewhere.

For now I’m enjoying the little confidence boost I’m getting from knowing that I wrote my first novel. It may not be great, but it’s a start, and right now that’s what I really need.

Feel Like A Slacker

I feel like such a slacker right now. I have had a horrible week. Scratch that, horrible few weeks. Not every day has been bad, just the majority of them. At one point we had to call my mother-in-law to come help with the kids while Hubby was working.

I’ve been getting the bare minimum done. Most of the dishes are getting washed. Dinner is getting made some nights, other nights the girls have to wait for their daddy to get home at 7 pm to make dinner (poor hubby has an hour commute each way on top of a pretty physically demanding job and has had to make dinner as soon as walks in the door). Some email gets read, not enough are getting written. I’m trying to stay on top of the job search, but I know I’m missing things. And, as I’m sure you can tell, my blog has been a little less…bloggy.

Cocker Spaniel mix asleep on couch

Wish I could kick back like this and not feel guilty about it.

I shouldn’t feel bad. I have a good reason for frick’s sake. I mean I had to text my husband while he was down stairs watching TV to come upstairs and help me out of bed so I could take my contacts out…I fell asleep while my daughter was doing homework and when I woke up the house was dark…This is not exactly normal behavior. I shouldn’t be beating myself up about all the stuff I’m not doing.

But I am. Just like so many of us with chronic illnesses, I tend to measure my day by what didn’t get done rather than by what was accomplished. Despite my best efforts to be kind to myself, I keep getting caught up in the thought I should be doing more.

I’m praying the tide turns soon and I start to feel better. I’m basically without health insurance until the end of November when the coverage at Hubby’s new job starts, so I can’t go see anyone. Even if I had insurance I don’t know who I would go see. The appointment with the new doctor was…interesting – I don’t know that I want to see her again but I’m afraid to switch doctors after something she said. Frankly I think the stress and anxiety over the fallout from that appointment is causing a serious Fibro flare which is really strange for me. Usually I have major Sjogern’s flares where my knees or ankles or everything swell for days or weeks and have lots of little few day Fibro flares. This would be the first serious long-term Fibro flare.

I know I need to relax and take.care of myself. But just for most of with chronic illness, that’s easier said than done. I’m going to focus on doing the best I can and try to celebrate my accomplishments instead of feeling like a slacker. I have a feeling it’s easier said than done.

Friday’s Guilty Pleasure – Ice Cream

Maybe it’s predictable. Maybe it’s a guilty pleasure for a lot of people. But, one of my all time favorite guilty pleasures is ice cream. Specifically vanilla ice cream with chocolate syrup. Simple. Elegant. Yummy.

Vanilla ice cream with chocolate sauce in blue bowl

Ice cream is one of my favorite guilty pleasures.

I’m not going as far as a sundae. (If we’re talking sundaes I have to go with the hot fudge sundae.) I’m talking about dish of ice cream for medicinal purposes. You know what I mean, after a rough day a little ice cream can make the world a much better place. It’s one of the greatest pick-me-ups there is!

My love of ice cream goes way back. I started eating it at night with my Dad when I was a little girl and it’s a habit I carry on today. I only eat a tiny serving, just enough for taking meds with (unless it’s been a really bad day), with just a little chocolate sauce (or more than just a little if it was a bad day).

I don’t have many vices. I’ve never smoked, I rarely drank and now with all the medications I can’t drink. Ice cream and Coca-Cola are my vices (Coke is another guilty pleasure for another time!). I think like any other guilty pleasure, as long as you don’t go insane constantly then it’s ok. A lot of people may not agree. And that’s ok too.

The way I look at it, one of the purposes of a guilty pleasure is make you feel better. There are so many things about chronic illness that make you feel bad physically and emotionally that if a couple of ounces of ice cream and chocolate make you feel a little better, a little more normal, a little more like you can face the world then it’s a good thing.

So what are your food guilty pleasures? Not necessarily comfort foods, but that something you know you probably shouldn’t eat but you just can’t help it. I’d love to hear about it below!

If you have an idea for a guilty pleasure post, or if you’d like to guest write a guilty pleasure post, drop me a line here and let me know what you’d like to do!