Tuesday, February 24, 2015

Post surgical consult hoorays and blahs

While I have the labral tear in my left hip, I also have bursitis, a slight CAM impingement (on both sides), and a snapping iliopsoas tendon. Basically, my inner and outer bursa in my hip are both unhappy. My left hip has always been worse, so the fact there is more wrong isn't necessarily a huge surprise but it just seems like a lot to have wrong.

I wish it was snapping turtle syndrome
One of the perks of my new job in healthcare is that docs are treating me more and more like I know what I'm doing or talking about. The doc gave me homework - to look up an article on injections into the ilopsoas bursa and how that relieves the snapping tendon pain.

As of right now, the plan is to have one (possibly more) injection into this inner bursa and see how that affects the pain. In about 80% of cases, this eases and ends the pain from the tendon at least. There are so many things going on that it's hard to pinpoint what is causing the worst problems. The first injection is scheduled for Monday at 9am and we'll take it from there.

I don't know that I like this idea anymore. Thanks Google!
The nice thing is that the doc is super nice. Two of the docs I work with in pediatrics also work in sports med, so I had heard good things already about this guy. I was a little out of it from being so worried going into things, which was also weird just because I wasn't anxious as I normally am thanks to my new meds. Thankfully, it seems like they're a little more used to that than I am.

Is it possible that surgery will still be in my future? Definitely. The CAM impingement makes it more likely that I'll need a little more attention directed at my hips in the future. The fact that I've got tendonitis/bursitis kinds of issues doesn't help. If the injections don't clear up the pain, then I'll be looking potentially at surgery to lengthen that tendon... which will cause more instability in my hips than the impingement does. It's not the best option, so hopefully it doesn't come to that. On the other hand, if that happens it'd give the doc time to clear up the labral tear as well.


I have to say though I'm a little let down after today's appointment. Everything went well and all, but I was ready for more action I think that it feels like we're taking. I'll probably feel differently once the giant needle hits my hip Monday morning though!

If you've got a rare disease, make sure to join me on twitter using the hashtags #chroniclife and #raredisease on Saturday! Learn more here.

Antidepressant update: day five

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!

Monday, February 23, 2015

Live Tweeting for Rare Disease Day - Feb 28

I've talked a little about Hurt Blogger's #chroniclife project (confused? learn more here) in the last few weeks. This Saturday, February 28th, is Rare Disease Day. Still's disease falls into that category.

To open up more dialogue about rare diseases, I'll be live tweeting the whole day using the #chroniclife and #raredisease hashtags.

Come join me and help raise awareness about rare diseases! You can learn more facts here.

Monday, February 16, 2015

Mental Health Ableism: what our support groups are getting wrong


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.

Okay, maybe I'm more of a realist?
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?

Friday, February 13, 2015

#ChronicLife Wrap Up

A few weeks back, Britt aka the Hurt Blogger had an idea based off a conversation - to live tweet 48 hours of her #chroniclife.

Before I get into anything, I want to share a few links - you can check out Britt's tweets here and tweets from other peeps like myself here. You can also read Britt's wrap up here and check out others she's linked to. You can check out the ongoing tweeting here.

Live tweeting my illness related issues was very telling. For me it opened up things I was repressing. It's one thing to have your rheumatologist tell you that you're banned from yoga and have to step back to water therapy, but it's another thing to stop being in denial and realize how very right she is.

I think we spend so much of our time censoring ourselves because what we want to say isn't popular or polite. Or, as many found during this exercise, we feel whiny when we share about our pain. We think it makes us complainers and nobody likes complainers!

Personally I learned a lot about myself. I learned that I ignore a LOT of pain in my day to day life. Obviously that's exacerbated with my hip issues right now, but still. I was more aware of the pain because I was more focused on it. It was honestly a mindfulness exercise for me. It gave me an opportunity to check in with my body in a way I hadn't done in a LONG time.
I shared a lot about my morning routine when I'm feeling okay-ish or when I don't have a choice.







I didn't realize just how much energy I spend on trying to look normal. Most days it honestly doesn't matter, but that one it did. I had a meeting to discuss applying to serve on a PCORI panel which was well timed with this experiment.

Writing this way, using a stream of consciousness, allowed me to share a lot of things I don't normally share, like pictures of my bra... which got furiously retweeted despite the lack of boobs in said bra.
As someone who deals with moderate depression and general anxiety disorder as well, I was able to share a lot more on those issues than I have in the past. I hope to continue to shed light on how my chronic illnesses and upbringing affect my mind.

It's interesting just how many people can be judgmental about mental illness, even those who also suffer with it.

I also got to share what keeps me moving when I'm feeling crummy.



And thanks to my Fitbit display, everyone knows what I weigh. I oddly don't care anymore haha.

This exercise brought up a lot more feels than I thought it would honestly. It both brought me together with others living with chronic illness, but also made me realize just how much of an individual I am. That's not necessarily a bad thing, but interesting.

My new job has changed some of the things I'll write about in the future, just like this experiment has. I hope to bring more research oriented information in addition to talking more about my depression, anxiety, and fears.

I want to start taking one day a week to tweet out information related to #chroniclife. Everyone hates Mondays, so maybe I'll start there.

I would encourage you to join the #chroniclife movement and see how much you'll learn about yourself.

Thursday, February 12, 2015

Got Transition?

One of the perks of my new job is being able to attend meetings geared towards those in pediatrics for improvement. Last week, I was able to attend a meeting on transitioning children to adult care - a subject that gets very little focus here in the US. Studies have been done recently, but most of them are based in the UK or elsewhere abroad. As a country, we have to get a system down.



Many peds patients don't realize they can't just keep the same doctor. True, some can if they're seeing someone in family or internal medicine. However, if you're seeing a pediatrician, you'll have to leave that practice by the time you're 25 (depending on your condition). For a lot of families, this comes as a surprise. The biggest first step is making sure that patients get that information - and that docs can help ease you into that transition.

Often, these changes mean that your insurance could be changing as well, which is an important topic to go over with young adults. The biggest thing of course is encouraging self care and self advocacy. As a provider, you want your patient to feel comfortable with who they're going to but also to speak up when things aren't right.

For those without a transition plan in place, there are increased hospitalizations, worsened medicine adherence (I HATE THIS WORD THOUGH), and possible lapses in insurance coverage. Kids need to know how to handle themselves to prevent these issues.

On the other hand, patients with a transition plan in place experience improved quality of life (from knowledge & education they receive), reduced readmissions, and there is often a lower cost involved for MD transition teams. This saves the patients and the overall healthcare system time and money.



So how do we get a good transition plan in place?

For patients, we need to have educational programs in addition to skills programs and support. Staff also needs to receive education, possibly with transition coordinators and joint care clinics to help with this process. The UK has already experimented a bit with joint care/transition clinics, and that's helped tremendously. There also needs to be enhanced service delivery. We don't often think of docs and other healthcare providers as having service type jobs, which I think we tend to associate with jobs akin to garbage collecting, etc. However, HCPs provide services for which they are billed. Our satisfaction as customers comes up more than one would think, but not as often as it should. Young adult/joint care clinics will help with this, as will enhanced follow up and phone support. I would also add support via other means of technology - social media, email, chat, etc. My generation hates talking on the phone, so PLEASE make it easier for us to reach out when we need to. I don't want to have to work myself up to calling someone if I'm already concerned.



The gal who spoke to us was from the Center for Youth & Adults with Conditions of Childhood (CYAC, pronounced kayak). There is all sorts of great information on their website about how they handle the transition process including a workbook. The clinic takes care of people ages 11-22... which is flexible. Their oldest patient is in her 60s, but there just aren't enough resources for her to get help elsewhere due to location. Damn the rural midwest!

They set up visits at predictable or personal milestones. Did you get your driver's license? Let's have a visit! Did you get accepted into a couple of colleges? Let's have a visit and talk about what accommodations if any you may need, etc. They do a comprehensive assessment with transition plans starting early and care coordination across the board. If you have juvenile arthritis, the clinic would take over your primary care while coordinating with your pediatric rheumatologist. Once you decide on a college, the first step would be to get set up with a rheumy out there. The last step would be to set up a meeting with the new primary care doc. This helps gives the clinic more coordination, but also the patient more time to adjust to some of the other changes while keeping some things stable.

Their team consists of social workers, nurses, family advocates, and of course docs. They also have graduations! In order to graduate from clinic, you have to be engaged with your new primary care doc, have sustainable insurance, either be self-managing or have an assigned decision maker, have an engaged support system, and have any special care requirements met. Now that last piece doesn't require you to be out of peds completely. If your ped rheumy will continue to see you longer and you're on board with that, great!



There is a website called Got Transition - a partnership between the Maternal and Child Health Bureau & the National Alliance to Advance Adolescent Health. It's great and you should definitely check it out! There are resources there for HCPs, which gives you a clue as to how you'll be tracked and measured. There is also a section for youth and families.

In Washington DC, they're moving to a new model of handling transition which seems to be going well. You meet with the peds doc, then s/he talks with the adult doc, then you meet with the adult doc. Once the full transition is complete, THEN docs get paid.  Docs weren't necessarily pleased at the idea, but hey what can you do?

As a part of the transition planning, docs need to be way more engaged in these patients' lives. They have to find the new docs, give them info on the patients, and see if the docs will take on these cases.

A downside for patients is that they get MORE HOMEWORK. Ugh! But this is meaningful homework ;) It may start out with you needing to learn the names of your meds to dosages to docs to setting up and attending appts on your own, etc.

One thing that struck a grumpy chord with me was the case studies section. Often, these patients were not sticking to taking their meds in order to fit in better and then having adverse events. It is true that this happens, but instead of placing blame on the patients, I think we need to look at our society as a whole and what we can do to improve how we treat ill people in general.

All in all this was a very informative hour. There need to be some changes made in how this runs I think to get it stable and running in more areas. However, we are SO far behind Europe on transitioning. It's awful. Something is better than nothing, and changes can be made later on.

Do you find these ideas helpful? If you're an adult, what would've helped you transition to adult care?

Monday, February 2, 2015

Still unpacking from Thursday's rheum appt

I feel like I'm still unpacking from my rheumatologist appointment on Thursday.

She wants to me live where stairs are not a thing.

She says yoga is right out for now, because it's balancing your own body weight and right now my joints and muscles can't handle it. Instead, back to the water with me. Or Tai Chi, but let's face it - I do not have the balance for that.

I'm frustrated because I knew I was not doing awesomely, but I didn't realize I was doing so poorly I guess? It's winter in Wisconsin, so I'm generally worse off. Maybe that's part of it.

I'm starting to look at cars because taking the bus is getting to be a lot. It's really not that bad, but when you throw on top the idea that we're looking at hip surgery? People don't even get up for younger gals with canes... will they do so with crutches? I have my doubts sadly.

Speaking of, I've called to see where in the triage process I am with the surgeon. He got back to clinic last week, so he should be making a decision on my case. From the docs I work with, it sounds like the normal process is to inject the hip first to see if that eases the pain, so we'll see what happens. I'm guessing that would be a part of the surgical consult.

I helped a patient this morning talk about joint injections, but I've never had one. I'm not excited about it. But I also recognize that they serve a purpose.

Oy.

I honestly don't want to think anymore about being sick today. It's a bummer.

If you want to learn more about the #ChronicLife, go check out that tag on Twitter. Hurt Blogger (aka Britt) is live blogging her illness adventures today and tomorrow, and a bunch of us have joined in as well.