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.

Sorry for Being MIA

I’m sorry I haven’t posted any updates. I’ve been having a flare and put my focus on getting through the day as well as possible so that I can finally get out of it. Now I have what I like to refer to as the the plague…a case of the sniffles my youngest brought home last week and quickly recovered from (during which she insisted on constant snuggles which lead to coughing on me and kept drinking from my cup despite being told not to). Of course I have the grown-up sick-person version complete with low-grade fever and chills.

Any way, I hope you’ll forgive me. I promise to be back to posting my usual drivel soon. In the mean time please accept this picture of my 16 year old dog trying to look all sweet and innocent but sticking her paw out to trip us as we walk into the kitchen.

Old dog on a pillow

Schmoopie may look like a sweet and innocent 16 year old dog, but I think she was trying to trip us for a viral video.

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.

Looking for Christmas Magic

This has been a really rough year for us. Between loosing my job, and my health getting worse, and the car getting totaled, and now loosing my unemployment benefits and my freelance work suddenly getting put on hold, it feels like we’ve been kicked while we’re down over and over and over. It’s hard to find things to get excited about when all you can really think about is trying to find enough money for food and rent. I know things could be worse. I’m grateful we have a roof over heads (for now at least) and we are still managing to keep the kids fed, but it’s a constant struggle and hanging over our heads.

Christmas tree lit with white lights

Looking for Christmas Magic

We have our tree up and a few decorations. We’ve done our little bit of meager Christmas shopping. But with all of the stress and the worry and drama and the trauma of the last 10 months, it just doesn’t feel like Christmas to me.

My favorite part of the holidays is the magic. The feeling that anything is possible. The ideas of rebirth, renewal and goodwill. The belief that miracles really can and do happen. And maybe, just maybe, if we wish hard enough, a little of the magic in the twinkling lights and Santa’s sleigh and the stillness of Christmas Eve will rub off on us and at least for a few moments the world will be a better place.

I’m just not seeing it this year. The lights are just lights. The bells are making my tinnitus go overtime. The preparation is making me even more exhausted. And my daughters’ excitement for the big day is making me anxious. There’s no big hope for a better tomorrow, I’m just hoping to make it through today.

I want the magic. I want to feel like there’s something special in the air. I want to believe that miracles can happen, but after everything I’ve seen and been through over the years and looking at the choices I’m facing, I’m sorry to say I have my doubts right now. I guess I still believe miracles happen, I just don’t believe they’re meant for me. I really want to believe they could, I just don’t know how any more.

But Christmas is the time for miracles and rebirth. Maybe I can find the magic I’m looking for. Maybe we’ll get the miracle we need and things will start to turn around (I’m not expecting to hit the lottery – that ship already sailed, but maybe a job or better pay for my husband or a bonus that will actually cover our bills would be nice).

Heaven knows I’m trying to believe. I really need to believe because if I can’t find a way to believe in the magic of Christmas, I’m not sure what I’m going to find to believe in the rest of the year.

Tough Decisions

I’ve been doing some thinking, I’ve actually been thinking about it for a long time, and I think it’s time to try to go on disability. I’ve thought about it on and off for a few years and every time I put it off thinking I’m not really that bad, and then I get worse. Part of the reason I lost my job earlier this year was because I sick (long story and I signed paperwork saying I wouldn’t talk about it). I’m pretty sure the reason I’m having trouble finding a new job is because I go into interviews and by the time I’m in there for a few minutes I start forgetting things, lose my train of thought, and generally start blabbering like an idiot.

But it’s not just about work. Most days it’s all I can do to wash a few dishes, make dinner for the kids, read a few emails and get up and down the stairs once a day –  forget about showers, laundry, cleaning, exercise or the other 101 things I should do. The things a “normal” person does in a day. Some days I don’t even get to the dishes, dinner and emails.

Here I am fighting to find a full-time job and I can’t even handle being up and about for a full day. The only thing I’m sure I can do full-time right now is feel like hell, so maybe it is time to look at all options. Part of me knows it’s a logical, practical and totally reasonable decision. Then why do I feel so bad about it?

I know that there are people on disability (both through employers and through the government) who…embellish the truth, shall we say. People who are perhaps a little more abled than claim. I just don’t understand. I guess I can understand the allure of having no work responsibilities on a daily basis, but I don’t understand how you do it without feeling awful about it. I have put off even pulling up the webpage for months because I felt guilty even thinking about it. I’ve pretty much been working at least part-time since I was 19 – not just because I needed to, but because I wanted to.

I spent the better part of the last 10 years being the either the main or sole source of income for my family. I’ve worked really hard. It got to a point where all I could do was work, I didn’t have the strength or energy for anything else. It’s been ingrained in me from childhood that you work as hard as you can until your last breath. I can’t help but wonder if I’m giving up.

Am I the only one who feels like this? Has anyone else gone through this kind of thing? Am I just loosing my mind?