Upcoming Changes!

Posted on by Grayson

I’m working on some changes over the next coming weeks here on this page.

An update to the page itself may be due.

Adding more resources as I come across them in my day job will be good, especially as we work to research and develop a transition program from pediatric to adult care for our clinics.

I’ll be introducing some themed days so I get back to writing more. A part of that is that, yes I’m ill, but that’s not all of me. Surprisingly there is life outside of talking to doctors (though I do work with them…), etc. One of the things I want to focus on is me as a whole person and I’d like to share that with you. Does that mean I’ll write every week on these topics? Probably not. But I will try.

  • Munchie Mondays – food, fun recipes, or new allergy-friendly finds.
  • Therapeutic Thursdays – talk about what I’m working on in therapy, coping, etc.
  • Self-care Sundays – everything self-care and self-love from how to deal with tough people to things I find comforting.
  • Wacky Wednesday/Weekends – we’ll see what happens, but I want to post things that will make you laugh!
I thought of this idea last night about 15 minutes before falling asleep and I haven’t worked everything out quite yet. We’ll see how things fall out. Posts about the giant pile of books I have to finish reading, life updates, etc, would be in addition to these posts (I think?). There’s definitely the idea of doing alternating weeks – one week Monday may be on munchies and the next it might be on meditation.
Over the weekend, I’ll be able to work on things a little more and we’ll see where it takes us.
For now, enjoy this fun article about Alan Alda doing improv with docs!
Oh, and did you see RA was on Dr. Phil yesterday?

(side note: I do not enjoy the Phil-ster, but this was actually a good bit)

Self Love & Care: the danger of toxic people

Posted on by Grayson

Back in December, I wrote a beginner’s guide to self love & self care. It’s a subject that I would like to start talking about more – both because it is so very needed for the chronically ill and because I sorely need a boost of both. For this post, we’ll be talking about toxic relationships and their affects on the self.

We’ve all been in relationships, no matter the nature, where one person has more power than us. Generally that isn’t a problem. When you encounter or are forced to deal with someone toxic, it becomes a huge issue. You might notice that this person often goes on power trips. They may make passive aggressive comments or comments fishing for compliments: “Oh, that hat is so cute. I could never wear it.” We all know what they’re really trying to say…

We all do things like this occasionally, but toxic people make it a habit to be slyly rude or bring drama everywhere they go. For those people we always have to deal with, like bosses, there isn’t much that can be done to remedy the situation. However, personal relationships should not include this type of negative energy.

Toxic relationships can be hard to get away from. They can be like religious conversions, where you really have to go extreme to make the change. For some, that’s moving out unexpectedly or while this person is away. For others, it’s changing phone numbers and altering privacy settings on social media. Some even have to eliminate mutual friendships or ties with family to really get away.

People won’t often understand. They’ll misquote the blood is thicker than water thing and just no. First of all, that quote means the opposite of what everyone assumes – bonds you form are stronger than those you’re born into. Secondly, you have the right to walk away from anyone or anything that harms you. Thirdly? Who cares what other people think! The only opinion that matters in self care is yours. As long as you’re not harming someone or creating dangerous habits (I’m looking at you, credit card debt!), go for it.

If cutting off all contact with a toxic person in your life isn’t an option, you will want to alter the relationship so that you can gain the upper hand. There are too many ways to do this for me to be able to list them here, but moving out or changing your personal circumstances will often lead to this. You can then control just how much contact you have with this person, and in what context that contact happens. Maybe you can handle being around this person for an hour, but that’s the maximum. You can make sure to make yourself busy or unavailable for more than an hour at a time.

Perhaps, like myself, you deal with family members who can’t understand what no contact means. Dealing with the stress of my family situation right now is very difficult. The toxic people in my life have been trying to squeeze information out of family members, which makes it difficult to know who in my family is okay to talk to. This severely limits my abilities to communicate with family or family friends which is really hard.

After reflection though, I know that not having contact with the toxic people in my life is what I need. It preserves my mental and physical health, as I’m not as anxious or depressed or holding in emotions which is known to make me flare. I have more integrity because I’ve stopped lying to myself or trying to force myself into uncomfortable situations. I’m also a hell of a lot less angry. True, some of the things I’m processing about my past are hard and bring up anger or fear. I am sharing more of those emotions with others in healthy ways and looking at things logically.

In the last year, I have grown in so many ways. I think my visit in March of last year to DC with the Arthritis Advocacy Summit really helped cement in my mind that I was not dependent on anyone else. Sure, there are people in my life that I love and want in it. I would be sad to lose them. But I learned that I am self-sufficient, something that I was told I would never be – whether due to my illness or the fact that I didn’t react to things as some thought I should.

Regardless, the personal growth I’ve had is amazing. I like myself so much better right now than I did a year ago. I even wore some crop tops over the summer! I enjoy the things I’m doing at work. They’re challenging but fun and really (eventually at least) helping patients. I love my boss. She and I are so similar and, having kids about my age, she is incredibly nurturing. I enjoy the other health care providers and administrators I work with.

Whether your toxic relationship is with a parent, a significant other, a friend, or someone else, I hope that you realize how very worth the fight you are. You deserve to be happy. That happiness cannot be dependent on others though.

One more story…

Before the last year of shakeups in my familial situation, I was plagued by doubts. When I was alone – whether in the shower for 15 minutes or on a 90 minute car ride – I would sit and think about what I had done or was doing wrong. I would think about how I wasn’t good enough or the mistakes I made. It was so bad that I was barely sleeping unless I had some alcohol at our weekly trivia night or took a muscle relaxer. I wondered if I was good enough to meet my dad, to marry my husband, to be in my niece’s life. I felt very stuck because I couldn’t get past these roadblocks set up for me by others.

I won’t say all of that is gone. There are still times where I struggle with decisions or mistakes, like being less than understanding for my sister when she’s faced hard things. I’m not fussing over my shock when I ran into celebrities years ago though. I’m not plagued by thoughts of how I should’ve told Bob Uecker how much I think he’s awesome or gotten his autograph… and it’s not just because he returned an RSVP card from the wedding.

Okay, it might help.

The point is that without the toxicity in my life, I can finally learn how to allow myself to make mistakes and to forgive myself for them. I’m learning how to love myself because, without that influence of toxic people and the issues they bring, I’m FINALLY getting to learn who I really am. I’m learning more what I like, what I think is funny, and what I really want out of life.

Perhaps the best thing is I’m no longer held up to standards that I can’t reach. I’m never going to be the president or a high level diplomat. I’m not going to run a crazy successful business. I’ll never be model thin… though I wouldn’t want to be either. I will do what I can in my current job to help kids. I will do what I can to help chronically awesome peeps with my advocacy and to help open the eyes of some of these toxic politicians. I will love the heck out of my little guinea pigs, my niece, and my soon-to-be-born nephew. I will create whatever relationship with my father and the family that he and I want. I will spend time with friends and not be restrained by the expectation that I should be at home locked away. I will travel and goof around with my husband. I will laugh deeply and love more strongly.

Right now the only expectation that I hold myself to is to be happy and to rock this one life that I’ve got. I couldn’t make those decisions without eliminating the toxic elements in my life. I hope that you can make any changes you need to in this area as well. It has been the biggest change for my health, mental and physical.

Post-injection life and therapy

Posted on by Grayson

My ortho told me not to get cocky. I’m really trying not to get cocky. I know that the kenalog takes 3-5 days to take full effect… but it also doesn’t kill me to go up the stairs anymore.

Something I’ve more or less dealt with my entire life that just got worse recently isn’t a thing at the moment.

I seriously don’t know how to handle this.

Don’t get me wrong – I was sore after the anesthesia wore off after the injection. I was sore yesterday morning (it was also snowing so maybe that?). Today I feel a lot better.

Ironically for just having gotten steroids injected, I’m really tired today.

Yesterday I started therapy again. We agreed that I need to learn some of the more basic social skills, namely how to set different kinds of boundaries. We also agreed that it would be beneficial for me to figure out what types of relationships I want with those in my life and talk with the people about them. I don’t know how real families work, so talking with my dad and his family and figuring out what we want our interactions to be would be good. I also need to process my emotions related to various events in my childhood and this situation with my mother who still is causing problems.

The nice thing is that my antidepressants are working well. As helpful as I know medicine is, there is still a part of me that was concerned to go on them at all. Growing up in a household that loved learning about medical care but thought it wasn’t okay to use it can be very confusing.

I’m spending more time with friends and family lately. Having my own car is helping with that for sure, but I think I’m also allowing myself to finally really be my own person. I also am trying to make up for some lost time… I feel as though I’ve needed so much more from my friends in the last year than I’ve given, though I know a lot of my friends don’t agree. Maybe it’s a little guilt over needing so much with the wedding.

These are my people!

My theme this month is all about healing, and I think I’m off to a great start!

 

Bursa injections are hella weird

Posted on by Grayson

This morning, I had my first big procedure due to my Still’s… Yeah, I’m a little behind. Anyway, if you remember from my last post, docs think the biggest issue in my hip is not the torn labrum but snapping tendon syndrome – specifically on the iliopsoas bursa aka in your groin.

Honestly, looking at that graphic, it makes sense that my left side would have a problem seeing as how that’s attached to the part of my back that has scoliosis. Interesting…

The injection was hella weird/awkward/wtf just happened.

Since the shot was into my groin, I did a little landscaping yesterday in preparation. I’m glad I did too because they brought out that lovely blue sticky surgical sheet.

First, got to experience a sonogram. I didn’t realize how weird that was going to be. My sister is due with her second kiddo at the end of the month, and here I am getting a sonogram! They could very obviously see the snapping in my hip as I did some extensions, which is good. They also were able to catch it from a couple of angles which was helpful. They got prepped and I got the lovely orange cleaning solution.

First, they went over stuff with me. They injected a numbing medication to help with the pain from the actual injection… then got that big needle all the way down to the bursa for the steroid and anesthetic mix.

One of the worst parts about it all was trying to move immediately after the injection. T had to help me put my pants on because it just was too uncomfortable to bend over with all the fluid now in my hip.

Side note: I’m really glad they required a driver because that was not fun and I definitely needed his help.

I got home and immediately did the things that before were hurting to see how much the injection helped. The biggest change got my 8 down to a 2 on the pain scale! Most everything was then in the 2-3 range which was so nice. I was able to crawl with Gus Gus with no pain.

MOM EVEN GAVE ME EXTRA TREEAAATTTSSS

Sitting in my chair at work without an angry hip has been really nice too. I’m trying not to overdo it, but I have done more flights of stairs than I normally do here at work.

I am so grateful to have had so many people be supportive over this whole thing. I know it’s not a hip replacement and it isn’t surgery, but even this was scary. It’s hard to be in a place where I am relying more and more on the world of medicine to be okay. Part of hating that is growing up without proper medical care. Another part is probably ego-related… and yet another is likely due to the fact that it means admitting that I’m not doing as well as it often seems to the outside world, that my body on the inside is more torn up and painful than I like to talk about.

Underneath applies to my innards right?

I’ve gotten through this and if I have to get more I’ll be okay with it as long as T is around, friends send me good vibes, and I’ve got my Batman underoos!

Post surgical consult hoorays and blahs

Posted on by Grayson

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.

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

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?

#ChronicLife Wrap Up

Posted on by Grayson

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!

One of the reasons I love my fitbit is that it shows me when pain interrupted my sleep #ChronicLife pic.twitter.com/N87D5NR1Vg
— Kirsten Schultz (@Kirstie_Schultz) February 2, 2015

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.

Dat #stillsdisease rash though #ChronicLife – at least it doesn’t itch at the moment! pic.twitter.com/gFzMQoTxA9
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

I shared a lot about my morning routine when I’m feeling okay-ish or when I don’t have a choice.

How am I gonna tame this with angry hands?!? #ChronicLife pic.twitter.com/T7TUnl8uQ6
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Now I have to figure out what to wear, taking into account pain levels, weather (esp humidity & cold), and today’s activities #ChronicLife
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

With a real feel of 9 and snow on the way, I’ll need to dress warm but not too constrictive on my joints #ChronicLife pic.twitter.com/fLW3Ei7aFx
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Now on to makeup, because I have a PCORI meeting to start off my day and don’t want to show off rashes #ChronicLife pic.twitter.com/dvGVHZzEhD
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

First to smooth out my psoriasis on my face and to reduce redness #ChronicLife pic.twitter.com/wEgobAbZom
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Now since all that erases color in my face, I have to replace some and actually wear blush! #ChronicLife
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

And now I look normal! Well kinda… Haha #ChronicLife pic.twitter.com/43uW9XvNwN
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

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.

The only bra that’s going to work with my shoulder pain is more for show than support #ChronicLife pic.twitter.com/AbvPr4NhfG
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

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.

Aaannddd coming home to happy “omg mom is home!?!!?!” squeaks from this lot #ChronicLife pic.twitter.com/hZDmCRXg7e
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Only time I kneel down for a long time – playing with my buddies! This us Gus Gus, my lil bff #ChronicLife pic.twitter.com/vfimdgLvDc
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015

 

The piggies are having problems #cagecleaningnight #quietestwithme #ChronicLife pic.twitter.com/WwUCKmOTNW
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015

 

I hit all my goals today! And even ended up 700 calories under… Give or take. #chroniclife pic.twitter.com/6UPztK2YUV
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015

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.

Got Transition?

Posted on by Grayson

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?

Still unpacking from Thursday’s rheum appt

Posted on by Grayson

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.