Category: gif

Therapeutic Thursday: interesting dreams and ruminations on my brain

Posted on by Grayson

I have been having some weird ass dreams lately.

Some dreams involve awful people in my family realizing the enormity of what they’ve done and admitting fault (AHAHAHAHA) and then offing themselves. It’s weird because in my dreams I never see the bodies despite being near the scene but I know what they’ve done in order to kill themselves without being told.

I think my mind is trying to protect me. I kind of wish it wouldn’t though. I get so angry sometimes and it might be therapeutic. I dunno.

Other dreams involve some members of my extended family randomly showing up to throw a party for me, which makes no sense especially with some of them who show up. The people I remember most at the party are the people I do NOT want to see because of how shitty they treated me when I was a child. (If you’re in my extended family and we haven’t talked in like three or four years even on social media? It may include you. #sorrynotsorry.) I was able to stand up (literally) and say I don’t want you here, pushing these people away. I also called people on their shit when they tried to act holier than thou.

Everyone has stinky, stinky shit. Enough.

I don’t like super unplanned interactions especially on that level (my extended family is HUGE) or involving the crappy people. Now that I’m an adult and am learning I have a say in things, I know I don’t have to be around them. It’s so nice.

At the same time, I feel bad. Most of those who treated me poorly likely didn’t realize or notice that there was abuse… and yet, shaming a child for being sick around a holiday or some of these other things aren’t necessarily things you’d need to know about the abuse to not do.

There are well-meaning people who want me to heal the wounds and start speaking to everyone again. I do so very much understand that notion. To me, though, that’s living a lie and I can’t do it. I can’t pretend all of this hurt isn’t here.

Some others in the family are so on board with what I’m saying. There are even people I knew in middle and high school – friends, acquaintances, etc – who have messaged me saying that they knew my immediate family was some kind of weird but not that there was abuse and that they’re sorry they never helped out. A lot of people have stopped talking to certain people in my family completely or at least scaled back the communication.

I never started telling my story to get others on board with what I’m doing. I simply needed to get it out and down on some sort of record so that when I doubt myself I can read the belt story and remember why I’m doing this.

I can accurately say that anyone who has altered relationships based on my story is doing so because they have the truth and not because I’m berating anyone.

I would be lying if I said it wasn’t an awesome feeling to know that others saw or see it now too. Validation does amazing things for those in recovery.

On top of those amazing people in my family, I am blessed to have friends who are crazy supportive. It’s so interesting to me how many other chronically ill people have been in similar relationships with their parents as I have had with my mother and grandmother. That is another validation for me.

Don’t get me wrong – I don’t need validation. For the last year, I didn’t have very much because I was more quiet about all of this. It doesn’t mean it’s unhelpful or that affirmation is wrong. Sometimes, honestly, it brings with it something that I need to hear, whether that means knowing I’m not alone or that other people care or that I’m not the insane one.

I think the fact that I’m dreaming about these kinds of things instead of flashbacks means that I’m making progress.

This taking risks thing is actually pretty cool. Maybe my brain is rewarding me for it with these dreams, showing me that I can handle these things.

Frustrations on the lack of patient inclusion

Posted on by Grayson

Today I saw two things that spurred this post.

One is that the American College of Rheumatology has, once again, refused to create a registration section for patients – let alone ideas surrounding implementation of scholarships, etc.

In the last few years, some patients have been able to go and have not been treated well at all at this event FOR RHEUMATOLOGY PROFESSIONALS. Some people had off-color remarks made about their assistive devices even. It was bad.

It’s really sad especially as it seems that the more patients I speak with, the more often the problems they have in engaging in their own healthcare come from specialty docs and very specifically from rheumatology offices.

I had a number of other complaints, including the lack of programming last year on dealing with younger rheumatic patients. This is frustrating as I’ve had conversations with their VP of education who told me she’d get back to me and, clearly, has kind of blown me off on this. Eventually I may post my original email with suggestions to her on here. It would be worth a look at least.

The other is that a doctor (little d not physician) on Twitter said the following:

@charlesornstein @RAdamsDudleyMD “patients are experts in their own condition” ? Give me a break.

— Niam Yaraghi (@niamyaraghi) June 17, 2015

I learned of these two things within seconds of each other, which of course prompted a Twitter rant.

One of Niam’s arguments is that he has a PhD which makes him an expert in his field – which happens to involve health care IT by the way.

Yup.

It was fun to take a look at the tweets being hurled at this man on his lunch break. I felt like I needed some popcorn.

Here, for your enjoyment, is my twitter rant plus some:

It’s really unfortunate when you have people who work in any aspect of health care and do not give one crap about the patient’s perspective or experience. The amount of people working in medicine with this viewpoint literally sickens me, because it leads to less action to remedy issues the patients are facing as doctors or other medical professionals downplay these issues – if they listen at all.

Would it make a difference if patients were given some sort of certification, since some seem to think a PhD or other high degree makes them more important or better suited to be an expert? This raises all sorts of problems and often eliminates those who need

Here’s my biggest problem – patients know their bodies more than anyone else ever could. We know when something is off and feels dangerously so. It took a month, for example, before my abscess was diagnosed as so and treated – AFTER my primary care doc at the time laughed literally in my face and told me it was a pimple and to continue my Enbrel shots.

We also know your systems or offices better than you ever could. We encounter every person in the clinic from registration/check-in to reception to your MAs and RNs/NPs to you. The NP at my last rheumatology office was the only reason I stayed. She cared enough to really talk with me, to spend the time with me that I needed even if it meant staying late. THAT is the type of care patients with multiple chronic illnesses need.

I realize that I’m lucky in working for a set of docs who, generally, appreciate and value the patient voice and experience. Our boss doc is amazing and I cannot say enough about the things she’s trying to accomplish in the community and for our patients. More than that, she asks me for my opinion on these things because I am a patient – but I also know these systems.

If you’re not a doctor who truly values patient input, then you are not truly in it to care for us. That would be like having a conversation about gender equality or abortion or reproductive rights without any women…

Organizations and individuals working in health care have GOT to stop with the paternalistic view of doctor knows best. I hate to break it to you but that isn’t always the case. If I listened to that PCP and injected my biologic, I could’ve wound up in the hospital or worse.

If you work in health care or know someone who does, I challenge you to connect with patients in your area. Ask them for opinions on the changes you’re making or the systems you use or the employees you have are working/will work for them. Ask patients about their daily lives or events in their lives, because those things could help show why their BP is still high or other things.

You cannot work in health care without valuing the patient period. You need to include patients as well – whether you’re in IT or a doc or a scheduler or a national organization. If you can’t bring them in utilizing empathy or other skills imperative in HC, then maybe it’s time for you to retire or change jobs.

PTSD: what it is, what it feels like, and why I hate it

Posted on by Grayson

PTSD (Post-Traumatic Stress Disorder) is something that I’ve been struggling with. It’s something that I try to be pretty open about on here because I know it helps myself process things but it also helps to raise awareness and help others feel as though they’re not so alone.

It’s common in our veterans but also occurs in a wide variety of people depending on their experiences. My comrades in being afraid all the time can include child soldiers, kidnap or assault victims, terrorism, bullying, those who witness death and natural disasters, or other traumatic and stress causing events. It’s actually a lot more common than people think. There is also a genetic component though it needs to be investigated more.

My brain even looks worse hooray!

In very very basic terms, PTSD is essentially where your mind and body are in constant fight-or-flight mode. Sometimes it’s just lurking and subdued, but can be triggered by a number of things. To expand, the trauma affect the levels and productions of certain chemicals in your brain like cortisol, adrenaline/epinephrine, norepinephrine, and dopamine. It can affect your prefrontal cortex and other areas in the brain as well as chemicals that regulate your temperature, growth, and metabolism… and your amygdala, which helps regulate emotions and learning and your memories.

Basically it just messes with your entire body. NBD.

There are a lot of things that happen as a result of this body-wide issue. I used to be very short with everyone and get overly angry at little things. I’m happy to say that I’m over that for the most part, because I’ve learned to communicate what I’m dealing with and express myself.

If you live with other chronic illnesses, you may notice that some of these are things we deal with due to rheumatic disease or other things – difficulty sleeping, irritability, difficulty concentrating, memory issues, etc. I feel like I’ve gone to Culvers and gotten a delicious meal to find it tripled in my bag.

But like with things I don’t like in it instead of delicious custardy goodness.

Anhedonia is when you stop getting pleasure or joy out of things you normally love. That one sucks. I would say for me that it’s the same as feeling flat but eh. There are have been days where I come home and the piggies are so excited to see me and I’m just kinda like…

That breaks my heart because I love them like they were human babies… which can lead into questioning myself on what the fuck is wrong with me and how I thought I could be a parent to animals let alone kids in the future being so fucked up, etc, etc.

That, hypervigilence, flashbacks, and intrusive thoughts are definitely my least favorite.

Hypervigilence is just exhausting honestly. Do you ever have the feeling that something bad is about to happen (like the dude walking behind you creeped you out) so you’re extra aware of your surroundings? Or where you might hold your keys in your hands in a way to fight back just in case you’re mugged or whatever?

That feeling has its place, which is exactly in those situations. It doesn’t need to be in your every day life. It’s exhausting, harms your muscles because they’re often tense, and mentally is hard to process unless you go into the CIA or something.

Sadly, I did not.

Sometimes I like my spy skills but not usually.

Flashbacks are just hard. For me they tend to involve moments where I didn’t protect my sister and instead watched her being beaten. That happens so much so actually that it’s almost refreshing when my flashbacks are of myself being beaten or assaulted or molested.

 

This image takes you through some of the steps that can happen over the course of a single PTSD episode but also of the initial trauma. If we think of it as a guide for being triggered, we can use one of my issues to walk through it (why do I share some of these things?). In case it needs to be said, from now to the next picture is going to contain major triggering talk for child physical abuse.

Right now I’m not able to watch Law & Order SVU which sucks so much because it’s my favorite. Katy and I used to watch it practically whenever we weren’t in class in college, so it also may be part of why some of my energy drink fueled papers sucked.

This is going to be a fictional trigger with a real result, but it’ll help shed some light on these attacks.

I’m watching an SVU episode and it turns out the child’s mother was helping her boyfriend to sexually assault her daughter. I usually can figure these types of twists out easily, but sometimes I miss them and they take me by surprise. When that happens, it’s almost like I can feel myself shutting down or I have to go do everything on my list ever NOW to get away.

I’ll explain.

When I’m initially triggered, I get the chemical fight-or-flight reaction. It makes my hair stand on end and I get a shiver in my back or neck. I may breathe differently – more rapidly and audibly, like I may cry or hyperventilate. My temperature changes. I zone out if I don’t go do other things because that’s a technique that kept me sane and from fighting/talking back. I’ll interact with you intelligently but may not remember our conversation. It feels like everything is still and taking forever because I feel slowed down.

Sometimes this is where it ends. Eventually I watch something funny or go do something and wake up out of this.

Other times I’m not so lucky. Maybe the SVU episode showed some of the interaction or showed a parent beating and degrading a child. I go through the process above, but with some add-ons.

It takes me back to sitting in one of the two rooms that was once part of the garage in the house I grew up in. They turned part of the garage into two rooms before we moved in – one with blue carpeting that was sometimes a kitchenette or pet room depending on the era, and the other with red carpet which was either a bedroom or a movie/hangout room. In the memory I bring up, the blue room was a kitchenette with storage and the red room was a bedroom.

There was one of those white wire shoe rack type things on the back of the door to the red room (which you got to through the blue room) where mom hung her belts in addition to shoes I think. All that ever stands out in my mind are the belts.

My sister is crying and screaming and begging as my mother drags her into the red room and closes the door and locks it. I’ve run after them wanting to know what happens, telling my sick six year old self that I can help my sissy. I know I can pick the lock but I don’t want to leave because what will happen to sissy. I’m presumed that me being near will help things not go too far. I’m scared as hell.

The wire rack hits the door as mom yanks her belt down. You can hear the clinking of the belt buckle, a noise that to this day elicits this memory. If my pants are falling down, please just keep it to yourself because fuck belts man. Fuck belts.

Whatever happened made mom angrier than normal. Normally, Kelsey just got hit with the inserty end of the leather belt. This time she isn’t so lucky. You can hear her still struggling as Michelle tries to get her into a position to whip. Maybe that’s part of why she got so angry? I have no idea. All the while Michelle is hurling horrid horrid insults at my baby sisser. They’re so bad I can’t access them. I know I remember but my brain won’t let me go there.

I move to hiding in a further corner and by this point I’m crying. Things haven’t even fully started yet.

But then they do.

And all I can hear is the snap of the belt, the violent clinking of the buckle, as it hits Kelsey’s skin… and her blood curdling scream. Every lash makes me cry out and by the time it’s almost over I could fill in for Niagara Falls. My throat hurts from holding in as much as I have.

It’s done and mom throws down the belt, which she’ll later ask me to pick up and put away before demanding that I cuddle with her. Touching this weapon and being so close to the woman who just did this makes me want to vomit. For now, Kelsey sits there crying and Michelle yells at her for it before leaving the room. She uses the old parent line about how this hurt her more than it did the child who was just beaten. She walks back to the main part of the house, not seeing me hiding in the corner thank god.

Kelsey has welts and bruises that quickly develop on her back. They really hurt her.

I feel like shit. I didn’t do anything to stand up for her or to wake my mother up to what she was really doing. I didn’t get help from other adults, though we were threatened with the knowledge that we’d be taken away and likely split up because who wants two broken girls. I feel like shit for still not really sharing details of this with anyone (this is the first time even T has heard this story in detail here). I feel awful for treating my sisser so poorly and for not protecting her. That’s what big sisters are supposed to do and I have failed.

I parented my mother enough at times that I feel guilty for not chastising her… until I remember that I was a six year old who everyone thought was literally dying. What could I do?

I feel helpless, hopeless, like shit. I’m worthless because I don’t do anything to stop this. I get angry with my mother, with her parents and grandparents. What did they do to raise this monster that bore me? My grandmother is much the same and has done similar things to my sister. She is, in fact, the one person I’ve ever called 911 on… Well, dialed 91 and threatened to finish.

It was much easier to stand up to her because (remember I’m in my six year old brain here) she is fat and can’t move as fast as mom. She also doesn’t sleep in the same bed with us or do nurturing things that mother does. Mother made me think that she was doing this because Kelsey was bad. Everything turned into her fault somehow.

My sister was treated like shit her entire life. My mother never cared to connect with sis – until I left and lessened contact. Then sis suddenly became this amazing child who could do no wrong, save not sending her poor mother money.

Sometimes this storm of thoughts builds and builds and I think about other events that happened or mistakes that I made. I spiral downwards until I’m numb and seem like a zombie. This happened everywhere – at work, school, lying in bed at 3am not sleeping, even during sex.

If I think about this, I get angry. Fuck you Michelle. Fuck you for all of this. It doesn’t matter how you were raised – you had a responsibility to do better by us, to love us and protect us, and instead you beat us physically and emotionally and allowed us to be sexually abused without doing shit about any of it. How fucking dare you?! And even more, you gaslight us. You try to act like what we remember didn’t happen. Then why the FUCK do we have the same or very similar memories? Why won’t you ever admit fault? That you did even one thing – maybe this particular thing?

Because of my research, my adult brain knows why. It’s because Michelle and Patricia are mentally ill. They need serious help that neither of them will ever get for many reasons, but namely the illness itself. Well, and not believing that they need it.

This all goes through my head in the span of a few seconds. While I’m zoned out, I notice everything. Hooray for special spy skills.

Now I’m just exhausted – physically, emotionally, mentally. I cry, sometimes in front of T or in the bathroom or at my desk at work or driving. My crumpled and angry body is done, spent, completely out of spoons in such a way that that phrase doesn’t do it justice.

It’s interesting to look at this image because so much of it has to do with ableism too, doesn’t it? Dismissing others as unimportant or unworthy? It’s like a family hobby. It gets so bad you think that you really are lying, like that episode of Star Trek.

The hardest thing about PTSD is that it’s a physiological response to an event or a series of events. When those events aren’t around anymore, though, your brain and body don’t know how to adjust. It still is prepared to protect itself. I’m grateful for the thought behind it, but living with the result is really hard.

Working on recovery is hard. It means revisiting a lot of this and allowing myself to feel the emotions and really be there with them. It sucks so many donkey balls.

I think the hardest thing is that sometimes the most innocent things trigger me. Sure, SVU is a perfect example, but sometimes it’s blinking a certain way or hearing a child scream (even happily) or a word or just someone being angry or berating/putting down someone else – even if they think it’s funny.

Of course, there is also the belt sound triggers. I hate public restrooms between this and being beaten during potty training.

I hate having a good memory honestly.

The good thing is that my antidepressant really helps. My therapist and I are working on some coping skills – and really working hard to get to the bottom of some things. I know that if I want to be more normal or have certain hobbies back, I have to get through some of this trauma. It’s not going to be easy and there will be days where I want to stop. I just have to tell myself that I’m different and will always be so, which is totes fine.

But you know what? I’m also unbreakable.

Medical Monday: link roundup

Posted on by Grayson

Here are some cool links I’ve been hoarding:

Want to know more about Biosimilars? Check out this video featuring awesome Global Healthy Living Foundation peeps. You should also check out what you can do to help enact laws against step or fail first therapy. GHLF or CreakyJoints can totally help you out with that.

CJ is amazing. One of the things I love, besides the amazing people who work there, is how supportive of patients they are. Recently Megan Park announced she was living with RA – and partnering with CJ to make a difference.

On that note, did you know Ashley Olson has Lyme Disease?? The lead singer of Imagine Dragons has Ankylosing Spondylitis. Morgan Freeman, fellow fibro fighter, is totally for legalizing pot. Speaking of awesome people and pot, Snoop Dogg recently opened up about his daughter’s lupus battle.

Maybe you don’t want to read an article about RA and death. If not, don’t click here. And definitely don’t click here unless you’re up for reading a heartbreaking convo in which a sick kiddo tells her mom she’s ready to die.

Need cheering up? Check out this funny article about chronically tired people. Maybe ruminate on ways to tell regular tiredness from fatigue.

As someone who will likely be starting a family within the next five year (HOLY SHIT SNACKS YOU GUYS), this article on medication use during pregnancy was comforting. It’s not always a no-no.

Next time someone you know uses a handicapped spot illegally, maybe forward them this badass letter. Or this article. I love this piece on a judgmental old lady (mostly because they’re totally the people who give me side eye).

I really don’t know how I feel about this next piece. It feels a bit too inspiration porn-like honestly… but Briana Donis IS pretty cool. Speaking of cool kids, CHOP totally held prom for their patients!

While there has been a huge push towards electronic medical records (EMRs), the feds are a little concerned and are backing off a smudge. This could mean less distraction in the office because docs can often get lost or immersed in the EMR system… but could also mean waiting for better communication for many. Regina Holliday is one amazing person who advocates for more EMR use through art.

Sometimes I LOVE hearing that I look good. I’ll admit to taking pride in my appearance when I can… probably because I can’t always function enough to do so. Not all patients like this though. Maybe we should all stop being so focused on looks? Or, like this article suggests, let’s compliment each other on looks but acknowledge that they may not reflect how we feel.

Oh hey, while we’re at it, let’s not isolate sick kids okay? Disabled gets often get separated from their peers and it HURTS like a bitch. Well, that and then we’re screwed often by the time we get out of school. By the time we get jobs, we face a lot of issues both internally and in the workplace.

Sometimes we know we need to stay home or quit or whatever but society seems to sashay on in.

In happier news, there is some exciting research with potential new medications on the horizon. A new potential lupus drug would target b cell receptors. University of Queensland researchers think they may have found a way to reprogram the immune system via a vaccine (kinda). Perhaps the most exciting and amazing news is that the immune system has been found to be directly linked to the brain! The vessels that connect the two are, obviously, good at hiding or we would have known this by now. This could be HUGE for us.

Until these amazing things have real world application, come learn about lifestyle management. Enjoy rocking a swimsuit with your ostomy bag. Check into this chronic pain management implant. Work to get your doc involved in patient engagement and giving patients compliments – and REALLY LISTENING so we don’t end up with long diagnosis stories anymore. Live tweet your illness experience.

Terminology Tuesday: Kineret

Posted on by Grayson

 

I totally stole this pic from Emily @ Chronic Curve

Well, it’s been done.

I went for labs Thursday morning and, despite a pred boost, my sed rate has only gone down ONE FRIGGIN’ POINT and my CRP has actually gone UP.

I cannot right now with this.

Anyway.

Kineret is an IL-1β inhibitor.

Hi IL-1β!

This little guy can be a cause of inflammation and in Still’s/SJIA interleukin (IL) medications tend to work better. The theory is that this is the type of inflammation we deal with more than others (TNF alpha, etc).

K-dawg (my new nickname for it) inhibits IL-1β because it’s IL-1α protein which can block the beta bits from attaching to cells and causing inflammation.

Some of the studies with Still’s show symptom relief within HOURS which is pretty friggin’ baller.

The downside? Well there are a few.

It’s still a biologic and it still inhibits the immune system. I haven’t had as much of a problem catching the ick from people on TNF drugs, but that can be a sign that those drugs aren’t working for you. The nice thing right now is that I share an office with one person AND work with docs, so they’ll totally get my precautions.

K-dawg is injected daily, which is nice if you have to stop it for some reason but annoying because daily shots.

The other big downside? Major injection site reactions. They seem to last for like a month for most people, causing fun painful welts. I’m not excited about this, especially if I do end up starting here before my JA conference trip and my previously planned swimsuit time while there.

Oh well.

I’m trying to look at it in a good light. With my old rheumy, I’d be stuck moving onto another medication that wouldn’t really do much for me. This is why I switched docs. With my current rheumy, who has treated Still’s before and hates step therapy, I’m ready to really deal damage to Arthur.

/nerd

I’m also hopeful. None of the medications I’ve been on would get me to remission. This could. And that’s an awesome notion.

 

Self-care Sunday: treat yourself

Posted on by Grayson

Have you ever felt like you’re not good enough to be where you are? It’s something that I’ve struggled with a lot and it seems to be really common among abuse survivors AND chronically awesome peeps. Hooray for the double-timing!

Anyhow, here are some ideas to help with that.

If that didn’t help, maybe you can embrace your different-ness like me!

Being different is beautiful. We know it because it’s a trait that we love to see in others. Maybe you love how Fit Aimee handles her illness issues or how funny Hurt Blogger is or how supportive Dawn is with #spooniechat. Each of them is someone you like because of the things that make them different than others.

Why are you treating yourself any differently?

Sometimes I think honestly it’s because we don’t know where to start. You have to learn who YOU really are, embrace him or her, and stop caring about what other people think.

One thing that can help is to date yourself. I mean, you don’t just marry someone without getting to know them, so why keep existing without knowing yourself?

My favorite date I’ve taken myself on was probably ghost hunting in San Francisco for a night while I was out there visiting Sammy. I needed to be there, but I also needed to do something for me too. The first date I took myself on, though, was to the movies. I hit the early morning showing of The Dark Knight Rises.

It felt funky to buy myself my own popcorn and sit alone in the theater… but I also was able to sit right up by the screen and ignore the very few other people around. After the movie I got a pedicure for the first time and loved it, even if it was awkward.

I try to do something every day for myself now because of how nice it felt to have that time. It might be going for a drive or indulging on food or buying ANOTHER new purse. It all depends on what it feels like I need at the time.

Some people think the idea of loving yourself is weird. I gotta tell you a story…

My social studies teacher in eighth grade really got me. He helped me to stop being so afraid of answering questions and being smart in front of others. He also was really supportive of me when I was having rough times. I told him at one point how annoyed I was that I wasn’t normal and he stopped me right there.

Normal, he said, was so boring. No one is normal because we’re all so different. Instead of trying to fit into this invisible mold, we should work on breaking it and being as weird as we can… because weird, it turns out, is the norm.

Kudos to you, Mr. Wayland, for planting that idea into my head.

Even though it’s painful or awkward sometimes, I’m embracing my weird. And I love it.

If I ever forget, I just remember my favorite place full of weird back in Oregon:

A recap of Arthritis Introspective G8

Posted on by Grayson
These amazing women made my Memorial Day weekend fantastic. I can’t say enough about them, or the many men and women I met at G8. Like, I’m seriously having a really hard time writing this post.

In reality, we all have very real and frustrating fears. At the same time, we’ve been through so much that some of those seem to be worries more than fears. Either way, AI is a group that’s here to support us during those hard times and celebrate good times with us. That’s not something that I’ve

Friday night, I got to spend some time with amazing people including meeting Kevin, the founder and current president of AI. I spent a good amount of the entire weekend with my dear friend Melissa from 710.9. We also got to meet Joe Coe from Creaky Joints in person and he was even cooler than I thought.

Me, Joe, and Melissa Hicks

Saturday morning started off with a keynote from Angela Durazo on her illness journey, but not before Kevin discussed his journey creating AI and Britt led us in a mini meditation. She did this ALL weekend and I loved it.

Next, we attended Fit Aimee‘s talk entitled “Holistic Experience: One Woman’s Journey.”

 

She discussed her journey with adverse side effects from medications once she get treatment and how, through a more holistic lifestyle, she’s been much more fit and healthy. She did say, though, that she needs to seek out a new rheumatologist for returning and worsening pains. With what’s gone on with me lately, I know how hard that is.

Inspired by her talk and the comments made by others during it, I’m working on eating a bit healthier, trying to really avoid bad foods, and adding a few more vitamins and such into my daily pills.

Melissa and I got to have lunch with Joe Coe, Britt Johnson, and several others who are affiliated with Creaky Joints, which was just a blast.

We took an amazing group picture before the next session.

Because of Aimee, everyone was hitting the water hard. With my crip hands, I couldn’t get cups separated!

My new goal is to make crip hands a thing. Seriously.

Next up was a talk by Lucky from The Tool Shed, a feminist and sex positive store in the Milwaukee area, on Sex and Arthritis.

Lucky has lupus, and so she really spoke from the heart on a lot of these things. I appreciated that she was up front, frank, and threw in some jokes to ease us. It’s not an easy topic to discuss, especially if you’re struggling with sex.

The evening’s reception was at Who’s on Third, which was amazing! Before we headed out there, Melissa and I definitely needed a drink!

 

— 710.9 – Melissa (@710dot9) May 25, 2015

 

Time to relax at the #aisupport G8 conference. @ArthritisIntro pic.twitter.com/JHyEXdxzr4

— FitAimee (@fitaimee_ra) May 23, 2015

And, of course, duck face!

I’m doing a duck billed playpus a la Julia Roberts

Trip to the sex shop!

The guinea pigs were a little bummed that I kept leaving early and coming back later in the evening than normal, especially with daddy piggie (T) gone all weekend. They were not pleased with this picture more, though, because I did not have treats in my phone.

Jaq (brown) chittered at me as if to say ‘Mom, you’re an asshole.’

So they got treats.

I gave them snuggles too and headed out to Milwaukee, noticing as I was driving how crummy and achy I was. I figured it was just fibro pain because I *did* sneak a few very glutenous fried cheese curds at the reception…

I honestly spent most of the day sitting on the floor because of how crummy I felt. It was sad times.

Sunday morning began with a keynote from Mark Guimond from AF on Arthritis Advocacy. It was an interesting session, but not necessarily as compelling for those of us who are already involved with the AF’s eAdvocate or Ambassador programs.

After the talk, I  got to spend a few minutes with a very flarey Kenzie. We clearly needed to take a selfie to commemorate our awesomeness before she headed home.

I wound up SO involved with the next session that I didn’t even tweet. It was called ‘Loved ones – taking care of you first’ and was led by Jen Ziegler who is the program director at the Pacific Region AF and another amazing person I was so glad to meet. We focused a lot on self-care ideas, which is something I’ve been posting a lot about mostly because I’m finally working on that for myself.
Lunch was SO good. We had a nice salad, a tasty entree including mashed potatoes, and the gluten free dessert was this flourless cake/fudge deal. It looked (and I hope tasted) even better than the regular cake everyone got.

We had a raffle afterwards and I made out like a bandit – mostly because too many people at my table couldn’t fit or didn’t want to deal with taking their winnings on their plane rides home. I snagged a nice bracelet, a funky cool fabric necklace, and a pack of Partylite candles.

After lunch, it was totally time for the session I was most excited about – Social media: finding your tribe from the Hurt Blogger herself!

The cool thing about Britt’s session was how interactive it was and how helpful everyone was. I was really the only Reddit user in the room so I discussed how helpful it’s been for me, more for dealing with my childhood/family issues than illness issues, and the things you really have to watch out for there and on many other social networks.

I felt SO smart.

After Britt was done, a bunch of us had to take some awesome ‘good-bye, see you soon hopefully’ selfies! DUH!

Photobombs = awesome

Britt had to head out shortly into our carrot cake-filled send off, which was too bad. But it was great to talk with Kevin a little bit about how amazing the weekend was and how excited I was for next year.

I got to go to dinner with Melissa, her dude, and Joe from Creaky Joints, which was a hoot. I really had SO much fun. We talked about organizations, advocacy ideas, and random silly things. I dropped them back off at the hotel and started to head home.

I called my sister to check in with her. That’s a long drive to do by yourself so many days in a row you know? Plus I hadn’t had a chance to really talk with her most of the weekend and I was excited to hear how my niblings and her were doing.

And that brings me to Sunday night collapsing in my apartment.

And, also, the enjoyable experience of using the Liberator wedge I bought not for sexy times for but propping my knees up all day Monday.

I have a World’s Dumbest addiction…
Thankfully, T was back from hanging out with his dad by the time I got home Sunday and was able to help me shower Monday and such. I used to really dread asking for that help, but I think having this flare after AI has really helped to change that feeling. Here were strangers offering to introduce me to others or open up their rooms so I could nap if I needed to or share Biofreeze. They were so happy to lend a hand and be there for me – why should I feel guilty of asking the same of my loved ones?
Also also, watching Tom Hardy in Mad Mex really REALLY helped. I mean, who could feel bad looking at this face?
Bad example?
I stayed home from work on Wednesday. The upside of that was making it to therapy AND Spoonie Chat in one night! Thursday at work, I looked hella fly.

Friday it was too hot to think in my office, so ick. I had ice packs and braces going. It was great.

The interesting this is that this a flare that was worth it, and I don’t think I’ve had a lot of those. I had such an amazing time at AI whether that was with people like Britt or Melissa, who are established bloggers, or people really involved or others who are just at the beginning of their illness journey. The coming together of so many non-judgmental people was amazing. I’ve never experienced that and I want so much more of it.

This makes me even more excited for the Juvenile Arthritis Conference and Medicine X later this year because I know I will get to see some of these amazing faces there as well.

If you’re interested in reading more from the conference, you can follow the hashtag #aisupport (or just click that link!) or check out Melissa’s Storify! You can also visit the AI site here.

 

Therapeutic Thursday: flashback central

Posted on by Grayson

Lately I’ve been dealing with flashbacks from growing up.

Last week I actually broke down hard and just lost it. I remembered the physical violence I endured as a very small child. Then I remembered that I felt relieved when Kelsey became the one to fill that role. I didn’t do much to protect her. Yes, I was a small child and couldn’t do much anyway, but part of me was happy that I wasn’t that person anymore. I even blamed her for some things – a common sibling thing to do I know… but it led to her getting hurt.

And I just lost it.

T did a really good job of helping me talk through what I could, holding me while I cried, and reminding me that both Kelsey and I are safe now. He told me that it wasn’t my fault, that I did what I could when I could.

I know he’s right. It brings back a feeling of helplessness though to know I couldn’t do much though.

A few days later, I had another flashback situation while at work. I was grateful it was one of the days that my officemate was gone. I was able to speak with Dawn who runs #spooniechat about what I was going through and she helped me deal.

The AI conference came at a perfect time.

I needed that togetherness, that group of people who know what you’ve been through and don’t see you as lesser for it. The amazing people I met there – whether for the first time or finally in person – helped me to deal with my feelings of inadequacy more than they will know.

Something that helped me immensely was being in a place where I could just let go of the tensions. I was able to drop everything and just exist for the first time in a long, long time. There were no sessions on healing from abuse, nothing specifically geared towards me in that regard, but the letting go of expectations was so fantastic. People offered to let me sleep in their rooms if I was too tired or gave me Biofreeze to help me deal.

I’ve tried to carry that feeling throughout this week. If plans change, I’m not going to get annoyed or mad. If issues pop up, we’ll handle them. If I’m uncomfortable, I’ll switch things up so I get comfortable.

That’s come in handy with regards to these flashbacks.

They’re SO real. I know that I’m not there, but my body doesn’t. It reacts the way it did in the moment – sweating, heavy labored breathing, shaking with fear, etc. It gets really hard to shake that feeling, especially when you can’t get your mind out of it. I often have to resort to watching something like Bob’s Burgers to quell that feeling.

I’m all for that, but flashbacks don’t always happen when you can stop and watch these things or take silly quizzes.

So that’s where these other experiences will come in handy. Recalling T’s voice telling me that it’s okay and that I’m safe helps. Knowing that my sister is away from crazy people helps. Knowing that my niblings won’t grow up how we grew up helps.

It’s still hard. It’s still going to be something that I have to deal with my entire life. I won’t pretend that it doesn’t affect me anymore, but I will work to move past it, to stop giving those who abused me the ability to fuck up my life.

If you’re dealing with similar issues, come listen to my fighting back playlist. Some of it is to remind me that I’m awesome and alive, but a lot of it is there to help me express anger when I need to.

Therapeutic Thursday: how fighting for my health turned into fighting for myself

Posted on by Grayson

My senior year of college was awesome. I loved living with my coolest friend Katy, having impromptu dance parties with ice cream and watching copious amount of Law and Order on energy drinks while writing our capstones.

She’s seriously helped me so much in the last few years. Seriously, she’s the Bey to my Nicki (or vice versa?).

My SJIA started acting up more during our senior year, no doubt in part due to the stress we were under. The campus clinic gals told me that I knew my body better than they did and that they couldn’t help me, unless of course I knew exactly what I needed (eg, the times I needed crutches).

Fade in to me crying in our very pink bathtub.

After being told to lie to my college for the first little while about insurance, I finally had bought my own for my senior year. Due to cash issues, I couldn’t really do much until after I got my tax return so I dealt with a crappy body (and nasty ass bronchitis) on my own until I was able to set up an appointment to get a referral to a rheumatologist in Milwaukee.

The rheumatologist was great – so great that after I moved to Madison, I kept seeing her for a while until I really needed to find someone closer. She respected that I didn’t want to start meds right away. After I got back from my May trip back to Oregon with T, I realized I couldn’t live like this before.

She got the paperwork for a handicapped parking placard to me, which is really how I was able to go to grad school as long as I did.

A month later, I contacted her to start Plaquenil.

Then a month after that, I had a horrible flare combined with an allergic reaction. I couldn’t sleep on my broken futon anyway – trying to do so like this was torture. I was so itchy that I couldn’t see straight.

I headed to the UW campus docs, and they made it clear that this was really serious.

I mean, I knew it, but a doc saying that? It was really scary.

Once I started seeing a local rheumatologist, I thought things would get better.

They didn’t.

I was on prednisone for the first time ever and wanting to eat everything. He started me on other meds. I complained of nerve pains and he suspected I had fibromyalgia but never said a thing to me.

That’s right – I went even longer than I should have had to in order to get treatment for one of the most painful illnesses out there. He also wouldn’t help me with my pain levels at all.

Way to go doc.

Did I mention that he’s written a book on integrative rheumatology? It’s kind of frightening.

I saw him because he was close to my grad school. It made it easy to duck out of class or sneak in late after an appointment. I quickly realized that convenience wasn’t worth the lack of care when he canceled an appointment two days before due to a last minute conference. The office didn’t care that as a graduate student working several jobs I had to take that day off. They didn’t care that I was losing money.

For the first time, I really had to fight to get my own care.

You know, if by party I mean move.

I researched rheumys in the area and found the highest rated, called their offices, and got an appointment four months out with them… which is about how long I would’ve had to wait for another appointment with my doc anyway.

In the meantime, I was seeing the on-campus docs for my primary care. The doc I had listed was very nice, but didn’t know what she was doing in regards to me and made that clear. She even told me to find a different provider outside of the campus clinic so that I could get the best care.

No one talked to me about insurance. So that was a fun giant ass bill to get in the mail.

Growing up the way that I did meant that I had to do this all on my own.  No one in my family regularly saw a doctor or knew how to navigate the system well themselves. That made it really hard. Here I am trying to study, trying to make something of myself, and I ended up working more to pay for those bills (or trying to anyway) than I was studying.

As I got sicker and sicker, it became apparent that working and going to school at the same time wasn’t going to happen… and I couldn’t quit my job…. so school had to go. It was just as well, because my mobility went crazy downhill on top of the ridiculous snow we got.

My mother, who hardly talked to me and was never around me, accused me of being an alcoholic for having one drink in the evening after a rough day while I was on the phone with her. It didn’t matter that I had bought a case of 30 Mike’s hard lemonades on sale two months prior and had had maybe three up until that point. It didn’t matter that I was depressed and in pain and upset about the grad school issue. She just kept ragging on me until I said I needed to go.

Months went on and the only thing that got better was the weather. One night I thought about crashing the car into a pole at an intersection near work. I thought that it would finally get someone to look at how much pain I was in and treat it – or the impact would kill me and the pain wouldn’t be an issue.

I wound up with C. diff after getting a tooth pulled. My primary care didn’t want to help with the pain.

I had started therapy, talking to some random dude without really getting any help at all aside from the validation that my mother was indeed the problem and not myself. I thought it couldn’t get any worse.

Laura passed away while I was in therapy.

The pain I had mentally and physically just increased in ways I couldn’t imagine.

I felt like I couldn’t do it anymore. I cried more often than not. I often couldn’t work because the fibro pain was so bad I couldn’t stand the sensation of clothing. I had lost everything I was working towards with school and was now in debt both from school and from medical bills. My mother didn’t give two shits about my mental state, other than the alcoholic bit and telling me to apply for disability and just give up.

I was horribly depressing and couldn’t take it anymore.

But I was planning my wedding and driving down whenever I could to spend time with my sister and her baby girl. I decided that I had to be proactive, if not for me then for T, Kels, and Missy Moo.

I realized that the big difference between pediatric and adult care is that the doctors don’t really care. I mean, they do to the extent that they want you to be well, but most of them don’t ask about things outside of your treatment or diagnosis or how certain ideas on treatment will fit into your life, etc. Many of them don’t put two and two together, and you’re always expected to hold up the rear.

I had finally asked my rheumy’s nurse practitioner to look at the symptoms I’d been reporting while seeing them. I told her I was afraid that it was MS and that I didn’t want to go out like my great grandma. I broke down.

She looked at everything I had said, ordered labs and a sleep test, and told me I likely had fibromyalgia. As she went over more of the symptoms, it became readily apparent that I had at least parts of this for much of my life.

This happened before Laura’s death. It took so long to find the right medication and dosage that it carried on for a while after that.

Since all of this, I’ve had to fight for changes in medication and care multiple times.

When it came time to deal with my issues with my mother, that fighting spirit really really helped.

For me to fight for myself took some drastic measures. Dealing with these illnesses and the abuse I did growing up, I had shitty ass self-esteem. I had to start learning that I was worth fighting for, that I matter.

That’s still a journey I’m on, especially in starting to finally face the abuse I’ve been through.

It’s really hard, especially when it’s people who are supposed to love you unconditionally and protect you.

But facing my mother, dealing with the abuse… It’s all led me to something that I’ve faked in the past but never had – self-worth and confidence. I’m beginning to love myself, to catch myself in the mirror and realize how beautiful I am inside and out. I realize the things I do to help others, at work and on my own time. Some of those people are strangers, friends I haven’t met face to face, or close friends from long ago.

 

It’s honestly a really weird feeling, but I know now that I can’t really be a good advocate without self-love. I always tell others to take care of themselves or fight for the best care when I don’t do that for myself. I can’t be a hypocrite like that anymore.
Even more than that, I look at the things that I’ve made it through, what I’ve survived, and I’m starting to really like myself as a person. I’ve been through that and had rough times dealing with things but never let it make me bitter. Am I expressive of my emotions? Definitely. I have to get them out.
I didn’t last night and I wound up with painsomnia and my joints all plotting my murder.
Needless to say, I used my free coffee on my Starbucks card this morning.
And I’ve realized that things like that are okay to do. Self-care is important, not only because you can’t help others without helping yourself but also because YOU matter.

Now I try to practice at least one self-care thing every day. Sometimes it’s a big coffee. Other times it’s getting a cute bag. Often it’s allowing myself to be happy even though the world isn’t perfect. Spending time with my guinea pigs and my hubby is my favorite.

Watching The Simpsons is generally involved too. Gus has learned that it’s pretty funny.

One of the things I’ve had to learn is when to fight, and that isn’t always easy when you don’t have super great social skills. I have to really start working through my abuse and all these things before I can really have what I want – full peace.

It doesn’t always look the same to everyone, but for me it looks like having a relationship with my dad & his family – one that includes Kelsey, helping my sister and those niblings to live an amazing life, spending time with my little family of piggies and T, getting a house eventually, finding a job where my hobbies like blogging and health activism take center stage, being able to travel and visit my amazing spoonie friends, and maybe having a kiddo or two.

I wouldn’t mind living in California either.

Y’all need to get some more rain though. Eep.

Whatever you’ve been through, just remember that you are worth the effort it takes to really love and care for yourself. You wouldn’t keep driving your car with the engine light on for years without getting it checked out and fixed would you?