Terminology Tuesday: fatigue

I put a call out for some terms y’all would like to see defined further and one of the first responses I received was fatigue.

Despite the above, fatigue is hard to define. We might say we’re tired but that doesn’t quite cut it does it? Sometimes I’ll tell T I’m tired and he’ll tell me to lay down. I rebut with some iteration of ‘well, it’s not sleepy tired though.’ I might go on to talk about my lack of spoons.

It can be hard to recognize what is fatigue versus things like drowsiness for some. Personally it isn’t, but it can be hard to distinguish drowsiness for regular sleepy tired.

Monsieur Fat-i-gue doesn’t come to a party alone. He usually brings his pals like muscle soreness or weakness, joint pain, headaches, sore throats, and more. He’s really a popular guy. The fact that he has so many friends makes it hard sometimes to get to the root cause of the issue. Sometimes it’s just that we’ve spent our spoons. Other times it might be a sign of a flare up or worsening disease. For others still, this could mean a new diagnosis is on the way or that medications are having more side effects than they used to.

It can be easier, depending on what’s causing the fatigue, to get help. If it’s a thyroid issue, starting on medication for this will help. Some of us are anemic or vitamin deficient and bumping up those levels can really help. These are all things that need to be discussed with your doctor though, as vitamins and that fun stuff also have interactions, contraindications, and side effects. If it’s a medication issue, you might discuss starting a different medication or changing dosages.

There are a lot of things that can aggravate fatigue, from alcohol to caffeine dependence to weight to inactivity or working out too much to depression and grief to our medical conditions and medications. It’s important to learn how to take a step back and check in with yourself to see if any of the non-medical things could be the cause to your fatigue.

For some, fatigue is its own disease. Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or by the new name, Systemic Exertion Intolerance Disease) can be really devastating.

Generally this is a disease of exclusion where your doctor will make sure things like fibro, lupus, other autoimmune arthritis types, diabetes, and more aren’t the culprits. That said, many with CFS/ME/SEID do have a lot of overlapping conditions like fibro so it’s a hard one to diagnose.

Unfortunately CFS/ME/SEID is like fibro in that there are many doctors out there who don’t believe these are very real and concrete medical conditions. They think, instead, that there is some psychosomatic issue at play. It’s unfortunate because you then wind up with a lot of people who need medical attention and help but aren’t receiving it either because their doctor hasn’t brought up the disease due to their beliefs or because they refuse to treat a patient with anything more than therapy.

If you or someone you love has fatigue, it’s important to fight to find the root cause. If you already have an autoimmune disease, that may be the culprit but isn’t always. Track how you feel, especially if things like weather play into it. Track your medications and physical activity so you can see if you may be overusing your spoons or having a reaction to meds. Most importantly, seek second opinions if you run into a doctor who isn’t listening to you.

As always, you really have to be your own advocate with these things. Know that myself and others are here if you need help.

Medical Monday: link roundup

You guys should totally pick up this awesome shirt and donate towards Megan’s ride!

I wish that so many people weren’t mean about handicapped parking. Sometimes it seems to throw others off if you’re nice. I’ve noticed I don’t get as many pissy looks now that my hair is so short. Speaking of disabled things, I’m really not sure why therapy and service are both being used to describe this kangaroo. I thought you could only be one or the other.

Vermont just removed their philosophical exemptions for vaccines! You’ve probably heard by now that CVS is buying Target pharmacy. I’m a little concerned what this might mean for me, as Target is my go-to, but we’ll see what happens. Apparently RA has been linked to solar cycles?

Dude, badassery on crutches here and more in the form of like this cartwheeling turning into a split here.

Make sure you always stay engaged in your care. Push when you don’t think something is right. Don’t be afraid to say no or to get other opinions. It may just save you from pain – and worse.

If you use wheelchairs or other assistive devices, you may want to avoid using Uber. If you need accommodations at work and the like, you can check out this site on Accommodation Information by Limitation.

Singapore has a new card that will let those with chronic illnesses skip to the front of the line for the bathroom. Do you have issues with staying hydrated? Soon there will be a water bottle that reminds you to drink! I think I definitely need to get this. Would you like to start a business but don’t know how to get started? This new program at the University of Illinois-Chicago can help! It’s all about entrepreneurship for those with disabilities.

Have you heard about people who want to be disabled? I feel like they should read pieces like this on living with all the pain or this one on feeling like a junkie. Maybe if they knew diseases like fibro carry a 48 hour recovery period, they’d reconsider.

If your caregiver or loved ones need a little more of a peek into what you deal with, please have them read this. It addresses some issues both in chronic and terminal illnesses – and many of these things overlap. Another thing that is always good is to have an ID card with you medical information on it. Other people like having more electronic things like RoadID. I personally have a handwritten ID card in my wallet along with emergency contact info that scrolls along my phone’s lock screen.

Don’t forget to breathe.

Self-care Sunday: embracing the weird that is me

My word for June was ’embrace.’

I’m excited to say that I think I have done that on so many levels for myself.

Over Memorial weekend, I went to the Arthritis Introspective National Gathering (G8) in Milwaukee. I got to hang out with good friends – and finally MEET some of them!

I’m still reeling over meeting Britt! LIKE OMG

That gathering was amazing. It felt like home to me and that was something that I’ve been looking for for a long time.

It also has gotten me started on some really exciting projects that I can’t wait to tell you about – but I have to for now! GAH. As a preview, one of them has to do with the sexytimes.

Oh yeah.

I also embraced what my true calling is and made the decision to go back to school this fall for my MS in Health Care Administration with a focus on Health Care Advocacy and Navigation. What can I do with that degree? Move up in my current workplace or even be a professional patient advocate and go to appointments with people!

Part of why June was about embracing for me was because I needed to embrace who I really am. I still haven’t figured it all out, but I don’t think any of us do before we shove off this mortal coil.

In order to really embrace myself, I’ve had to deal with some hard things in therapy. It’s going to get worse I know, but it’s worth it. I’m not going to let go of my past, but I am going to OWN it.

I will no longer be a victim to my disease or my mother or anything else. I am what I make of myself, shitty past or not. I am a funky ukulele playing guinea pig parent who had a baseball wedding and believes in ghosts – and talking to them. I am a bomb ass wife, learning how to really be a sister and a daughter. I am a chronic illness patient and volunteer who loves talking openly about silly subjects.

Most of all, I’m a silly optimist.

 

June 27th is National PTSD Awareness Day

Tomorrow, June 27th, is National PTSD Awareness Day. You can learn more about what you can do to help raise awareness here.

There are, unfortunately, so many of us living with PTSD. Sometimes we don’t know it, or we do but can’t access resources we need.

If someone tells you that they don’t like certain things and are very reserved about why, please be patient with them. It could be PTSD related and you could be triggering a bad memory. Be kind and ask them what things you can avoid doing or what you can do to help them feel safer. Oftentimes, it’s just being around, caring, and being aware of triggers.

One thing you can do is wear teal (one of my favorite colors btw) in solidarity tomorrow.

Therapeutic Thursday: high pain, bye pain

Back on the 15th, I left work early because my crip hands were spazzing out and I was hitting 8 and above on the pain scale. I tried to be patient first with it being the first day off pred, but nope.

Driving home sucked because my hands weren’t wanting to bend. I parked slowly and walked up the steps to our apartment while pain just kept getting worse and worse. Finally, I practically collapsed in front of the guinea pigs and pet them while I just bawled.

I kept thinking the following in an endless loop:

  • Useless fucking crip hands
  • I wish it was my legs – at least I can be productive without really using those!
  • Why did I think I could still work?
  • Why did I think I could amount to anything?
  • I can’t parent these piggies well let alone a fucking child
  • What the fuck was I thinking getting married and thinking about a family and starting school soon and what the fuck??
  • I don’t want to die, but I just don’t want to *be* with this pain anymore
Save the first one, none of these were really my thoughts, but the last one scared me. I got up and took my NSAID and a zohydro – a precious narcotic that I only reserve for the worst pain.
I brought it up in therapy that week and my therapist was insistent that there were ways to visualize in a way to help myself feel better. This includes thinking happy thoughts like petting the piggies or watching Jaq popcorn everywhere. It helped for my mental anguish but didn’t really do anything to help with the physical pain.
I don’t know what to do about this. It was the worst day I’ve had in a long long while pain-wise. I need to start kineret like NOW. Otherwise I’m worried this will keep being the norm.

Terminology Tuesday: cytokines

Cytokines are crazy little buggers.

Basically, cytokines are molecules or proteins that help communication in your immune system. If you scrape a knee, for example, the pro-inflammatory dudes say “HEY YOU GUYS” and get cells moving to help protect and heal the area.

Cytokine is basically the umbrella term, with lymphokines, interleukins, TNF, and chemokines included among others as more defined types.

This could get very technical very quickly, but I want to keep it basic. These terms aren’t easy to understand sometimes and, to be honest, it could take a long time to really learn everything there is to know about cytokines.

These are cells related to an inflammatory response, so if you have certain diseases these guys aren’t always helpful. However, they can and have been manipulated to create some of the medications to treat autoimmune or autoinflammatory diseases. For example, we have TNF alpha inhibitors like Enbrel and Humira that suppress that specific cytokine to help lower inflammation in the body. Actemra similarly suppresses IL-6.

Therapeutic Thursday: interesting dreams and ruminations on my brain

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

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

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

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.