Category: gif

Terminology Tuesday: Idiopathic

Posted on by Grayson

We’ll start this new series on terminology off with an easy term to define – idiopathic.

Juvenile idiopathic arthritis used to be known (and is still often referred to) as juvenile rheumatoid arthritis. However, this led to many people simply asserting that JA was a childhood version of RA, with basically the same symptoms, complications, and issues.

This isn’t true.

Renaming JRA as JIA both removes the stigma associated with ‘rheumatoid’ and helps to label the disease as one with an unknown origin.

Simply put, idiopathic means that no one knows what causes it.

I never thought to look up the meaning of idiopathic until one day while watching House, MD, when I heard this lovely conversation:

Dr. Allison Cameron: [giving differential diagnosis] Idiopathic T-cell deficiency?
Dr. Gregory House: “Idiopathic”, from the Latin, meaning we’re idiots ’cause we can’t figure out what’s causing it.

The next time someone asks you what ‘idiopathic’ means, just whip out that House quote. It’s the perfect definition.

Self-Care Sunday: when being sick is actually great

Posted on by Grayson

I was really sick this last week. For the first time in a long time, that was the only thing bugging me!

Around the 5th, I started getting a cold… or so I thought. By that Saturday, I was feeling pretty rotten and had started coughing up some sputum along with wheezing. I did have one cough that made me take a step back and say “Hmm, last time I had that kind of cough was when I had bronchitis.”

Maybe should’ve listened to that little voice instead of shaking it off.

On Mondays I’m in my office alone, so I went even though I was feeling pretty rotten. I hacked away all day and tried to eat something spicy for lunch to see if I could drain all the congestion out. Later in the day I called my primary care doc to try to get an appointment, which they couldn’t do until Wednesday morning. The nurse was going to talk with the doc and call me back, but she had to settle for a message in our EMR system and the doc didn’t respond until after the nurse had left. Their concern was that my childhood asthma had popped back up… I have no doubt that my asthma is still around because I do have a terrible mucus problem, which can be a sign of asthma… and it’s actually kind of serious. Good thing I’m working with some docs on asthma training or I’d never have known!

Cue another frustration about growing up sans medical care and in a bad situation.

I get a call back from this nurse Tuesday morning who explains it’s likely that my cold has kicked up my asthma, but that I should head to urgent care to make sure it’s nothing more serious as they didn’t have any appointments available. After an hour of watching my new passion, Golden Girls, I donned my Batman underoos and headed over to urgent care.

I proceeded to wait for about an hour before getting an exam room, where I waited another 20-25 minutes. The doc took a listen to my chest and I was grateful for once that I was wheezing! He said that while there might be asthma at play, I definitely had bronchitis.

Cue the nebulizer!

I had to run around after I got out of UC to pick up my z-pack, coughing pills, and inhaler… and a few goodies since I wasn’t allowed to go to work until Thursday. I got home a little after 1:30, took some pills, and settled in for a self-snuggle.
Wednesday was a great self-care day. I allowed myself to do many things on this great list, from staying clear from my laptop to eliminating shoulds to enjoying guilty pleasures. It’d been forever since I rented something from Redbox, so I watched Big Hero 6 and Rosewater. Both were great movies, and now I really want Baymax.

I hate being what I call ‘normal people’ sick. Upper respiratory infections are even worse, because I can’t really play with my guinea pigs. They can die within 24 hours of getting one… which makes for one paranoid piggie momma.

Last night I finally got to play with them again. They were so excited!! I cleaned their cage while daddy piggie learned how hard it is to watch Gus. He has SO much energy.

It really took me being sidelined with bronchitis to get enough rest. It’s funny because I feel like I don’t do very much on a regular basis, but doing nothing helped show me that I was wrong.

I have a challenge for you!

Not everyone has to get scary sick to experience this type of rest. As a part of your self-care, I want you to pick a day where you can easily do very little. Keep track of all the things that you feel like you should be doing, but keep your to-do list very small. Only do small things you can easily accomplish or are that restful. Partake in hobbies you don’t have time for on a normal basis. Take a nap. Watch a trashy show or kids movies. Enjoy your favorite foods. Set aside a day to practice self-care and self-love – and let me know how you feel at the end of it. It’ll be hard, but I believe in you!

 

Antidepressant update: day five

Posted on by Grayson

When this posts, I’ll be freaking out in a surgeon’s office over the whole torn labrum issue… so let’s talk about happy things!

I started my antidepressant Friday following a doctor appointment on Thursday… in the middle of having food poisoning, but no biggie, right?

As much as I felt awful from that all weekend, I noticed that I’ve laughed more – and not just more, but more deeply. I’ve felt more in the moment and my brain has been able to function quick enough to not only get T’s punny jokes right away but to also make my own.

Seriously, so nice.

I also slept in my bed for the first time in a WEEK Sunday night. My hip is a little less happy today because of it, but it was so worth it.

Playing with the guinea pigs was easier and I got quite a bit done because I had motivation. Part of that was likely due to the fact that I’ve eaten more than two bananas now that I’m recovering.

T and I also are consolidating finances so we can look at getting a house next year-ish. I was actually surprised what a good position we were in to get everything moved around the right way to pay off. It’s pretty awesome… plus now I can continue my HGTV obsession because it’ll mean something in a while.

I do still feel like I’m not up to speed at work.

But I’m being challenged in a great way and I can handle that. It just means I need to work a little harder at this, and with the mental fog lifted a little bit, I think that’s doable. Plus I’m working on some amazing projects and helping to keep patients more at the center of things which I LOVE.

For now, I’m off to be more anxious about my surgery consult. See ya on the flipside!

Mental Health Ableism: what our support groups are getting wrong

Posted on by Grayson
I need to rant a little bit about the ableism present against mental illnesses… mostly because holding in my frustrations about it worsens my own mental health issues, but also because it’s not talked about.
First, some stats…

In January, I was poking around in EPIC’s MyChart, an EMR system, to try to find information on both my MRI results (because waiting a week was nerve wracking) and what exactly my former rheumatologist was treating me for… Turns out NOT SJIA, but polyarticular JIA. Frustrations abound.

But I digress.

I found an after visit summary from my therapist I was seeing a few years ago starting before Laura passed away. He was helpful in dealing with the grief from her loss as well as the issues I had with my family situation, but wasn’t necessarily as helpful for other issues. I knew that I had been dealing with depression and anxiety, but he put down two diagnoses that I hadn’t seen for those – Generalized Anxiety Disorder (GAD) and moderate depression.

It would’ve been nice to know what was going on with me the last couple of years before last month!

I had a lot of life changes in the last year, so dealing with both was very difficult for me. Wanting everything with the wedding, with my family issues, etc, to go right brought about a lot of anxiety. I’m go grateful for how wonderful that day turned out to be. I’m just floored at how much laughter, fun, and love there was.

I met my dad and his family, which was awesome but a little scary. I’ll admit that. There are no words to describe it. My sister moved out to California and then discovered she was pregnant again. T and I moved and I changed jobs as well as having worse health issues. We adopted three adorable guinea piggies. T’s therapist retired, who has been a huge help to us both. He’s known T a few months longer than I have, and so he’s seen our whole relationship. I think around October I was doing really well, but when my hip issues started in December things went downhill again.

Me? Maybe

I have noticed with that change in my mental health how differently I’m approached by others in the chronic illness world. When I was doing well and putting more inspirational things out there, I was getting more feedback – mostly positive, but still. Now, when I’m a little more in need of that support, it seems that others aren’t always as willing to give it. People think I’m being extremely negative all the time by discussing what’s going on with me, my fears, and my anxieties. As an optimist at heart, that bugs me.

We all handle our physical illnesses differently, just as we do with our mental health struggles. Mental health is paramount to physical health and vice versa, which is a huge part of why those with issues on one side often end up with issues on the other. There just seems to be a huge disconnect in the chronic illness world between those who discuss one or the other.

A related issue seems to be the lack of support if you don’t fit one mold. A lot of that depends on those you know or what subcategory of illnesses you have, but it’s still an issue. I know some people who have been treated poorly because they’re able to do more physically, but I’ve also seen that go the other way. Right now being laid up, I see it a lot more.

Being MIA from being active is driving me nuts

In line with that, there are those who believe that if you’re positive you’ll do better. There are studies that go along with that, but that also state not to deny your emotions… Personally, if I hold emotions in, they build until I have a major mental health issue or flare up physically. I’m not the only one who knows/thinks that you have to give yourself permission to deal with your feelings.

There is a difference between encourage positivity and kind of pushing it on people, remarking things akin to “if you just focus on the good/light/etc, you’ll feel better.” That type of thinking is actually a form of victim blaming.

It’s not as easy as a choice

It’s so similar to when someone says “my uncle’s brother’s former roommate had that and he just started thinking happily and he’s fine now.” It really bothers me, especially always being someone people refer to as the ‘Pollyanna’ of our friend group or at work, etc.

I think we all know the problem with that type of thinking. It invalidates all the hard work we’ve done to try to get better. If someone suggests copper bracelets or what have you, they may want to truly find something to help you. That’s great and I love that there is support there, but it’s misguided and misdirected. Again, it invalidates your hard work, your feelings, etc, and you end up having to put on a happy/polite face so that people don’t get frustrated with your response.
Telling someone to ‘choose’ happiness invalidates the emotions they are going through. That’s not what we should be doing in the chronic illness community or as loving and compassionate people in general, not even close.
If you want to encourage others to be happy, that’s great! Encourage them to find things that make them happy, to try new hobbies they’ve wanted to get into, or to practice self care/love/compassion. Be there for them when they’re going through hard times. There is a difference between support and lecturing, and advice without the support is the latter.
If you want to encourage or coach someone, you have to acknowledge what they’re dealing with. You can’t simply say things like “Oh, it’s not that bad. You’ll be fine.” Invalidation does not work. Active listening, compassion, and empathy do.
I think it’s funny that these are things we want our doctors to do, and yet we as patients don’t do it to help each other!! We cannot honestly afford to be hypocritical when we’re trying to change the whole healthcare system!
I would love with all my heart to be ABLE to choose happiness over my depression and anxiety. I honestly would love nothing more than to be as calm in the face of adversity as my stepmom or handle frustrations as well as some of my other chronic illness friends. Believe me, I’m not choosing to feel the way that I do. I’m not choosing to lose sleep over not handling situations correctly or coming up with a great comment I should’ve made for a conversation I had with someone two years ago or to want to cry when I’m alone.
I’ll admit a lot of that is not helped by uncontrolled pain with this hip though oh my god. It keeps me up and my brain tries to keep me ‘entertained’ in the meantime.
Not being in a position to choose happiness, I ask that we stop acting like it’s always a choice. The idea of some methods of promoting positivity being akin to victim blaming isn’t going to be a popular one. Many people won’t see it that way, and that’s fine. I fully acknowledge that my ideas on this aren’t for everyone. I recognize that I’ve lived a very different life from many other people. I’ve been through all sorts of abuse and, honestly, could probably add a bit of PTSD to my mental illness repertoire. Not everyone deals with these issues, and some people deal with more.

Honestly I just really hope that this post gets people talking about mental health more than just stating that there is a problem with how we approach it as a society. We need to start asking how to treat others and ourselves with more compassion. I’ll start – Thursday at my appointment with my primary care doc, I’m going to ask about medications for depression. Things aren’t super horrible right now, but they’re not as good as they were… and being laid up and dealing with recovering from a surgery is going to make them worse. I’m going to take some proactive measures and see if I can’t get myself to a better place mentally with medications since I can’t balance it on my own with coping mechanisms and meditation. They both help tremendously, but not enough.

Have a cuppa!

If you’re looking for resources on self love/care/etc, wander up above to the resources page.

What do you think? Are you an optimist, realist or pessimist? Does thinking positively help you, or does it frustrate you when people suggest that as a solution? What’s your experience been like?

Perhaps more importantly, what are you going to do to start showing more compassion and empathy towards others?

A response to Rand Paul and the GOP threatening to raid SSDI

Posted on by Grayson
Have you read Rand Paul’s recent comments? Just take a minute and look them over…

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting your disability check. Over half of the people on disability are either anxious or their back hurts. Join the club,” he added. “Who doesn’t get up a little anxious for work every day and their back hurts. Everybody over 40 has a little back pain.”

Guess what? Sometimes I have the energy to look nice. Sometimes I HAVE to look nice for things when I don’t feel like doing so. Sometimes I just wake up like this.

Don’t judge me on how I look sir, because I’m pretty sure you wouldn’t want the tables turned. You definitely don’t look like a president to me, but like someone who became powerful riding daddy’s coattails and is trying to stay relevant.

Republicans haven’t said what they’ll do, but [Rep. Sam] Johnson [Texas Republican] has previously sponsored legislation that increases punishments for disability fraud, which he characterizes as rampant. The Government Accountability Office estimated in 2013 that about 1 percent of benefits were fraudulently paid to people who could work. In its latest annual report, the Social Security Administration says 14 percent of disability beneficiaries suffered “mood disorders” and 27.7 percent had diseases of the musculoskeletal system or connective tissue, which would include back pain.

Hey guess what is included in that 27.7%? I’m guessing the rheumatic diseases. Would you like to know how fun it is to hobble into the bathroom on mornings I’m in extra pain? How about how terrifying it is to have a bowel movement in the morning when I haven’t taken my meds yet and my hands don’t really work?

Or how I’m impacted by not being able to be intimate with my husband as often as I’d like because I can’t move the right ways? How about what happens when I can’t wear clothing because my fibro is killing me, and how even sitting on my couch is killer? How I can’t even hug someone or hold hands because it hurts so badly?

Or maybe you’d like to have multiple deformities with surgeries every couple of years to try to fix things?

Also, mental illness can be very crippling, so don’t discount that. You can’t do anything, and it starts to impact your physical well being, from issues stemming from lack of self care (lack of hygiene making you sick) to very real and meaningful physical pain. Don’t you dare take away the few resources available for those suffering from severe mental illness.

I WILL move to Canada you guys.

Also, more maple syrup there than Wisconsin. Go figure.

Paul’s office said the comments were taken out of context, and forwarded the following statement from the senator on Wednesday afternoon:

“We absolutely should take care of those truly in need of help. But the system is broken, and when people can game the system, they are stealing from those who are truly disabled and won’t receive the care and aid they need,” Paul said.

Sure they were, Rand.

Here’s the deal. Are there people who scam the SSDI system? Definitely. You know what you need to do to combat this? Put more funding in the fraud department who can investigate the claims against those who may be committing fraud. Here in Wisconsin, there is something like 3 people in the fraud office. They will NEVER get through all the tips to investigate people.

There are people who rightfully deserve SSDI. Do NOT punish them because of the few bad eggs.