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.

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.

 

 

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?