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.

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.

Self-care Sunday: chronically bad ass patient’s bill of rights

One of the things that I’ve always found hard about SJIA or fibro or other illnesses I have is how people can’t see what I’m dealing with. It gets easy to judge me or others as abusing the system (parking, SSDI, whatever) because we’re fat or lazy or whatever.

I also realize, however, that it does make me privileged. I can pass as normal, no matter how I’m feeling, and no one ever has to know. This is handy for jobs, dates, and a whole handful of things that I know I take for granted.

In doing some soul searching, I’ve realized that I don’t utilize assistive devices as much as I should as a result of all this. If I look otherwise fabulous, I’m not going to want to show off that I’m sick. Recently, I’ve been working on getting over that shit. Seriously, who has time to care?

With this flare kicking my ass, I’ve worn just about every brace and wrap and sling I own to work or with friends or at home. I mean, I’ve gotten to the stage where I’m comfortable farting in front of T now. Is a shoulder sling or K-tape really going to affect what he thinks of me?

Seriously though, it’s one of those things where I find myself blessed and cursed all at once. On one hand, being able to sometimes do is HUGE. On the other, validation and having people believe you that you’re in pain is also huge.

Neither way is better and both have trade-offs… though there really isn’t much we can do about those.

It got me thinking about how we often don’t feel like we have the right to be sick. That can be from chronic issues or acute issues too – like when you hear someone say that they can’t afford to get sick right now.

Sometimes that’s a very literal thing and that sucks. Sometimes that means you’re a mom and you don’t get sick days. Sometimes that means you’re chronically ill and don’t have enough sick time to get normal people sick.

When you go to a hospital or clinic, sometimes you’ll encounter a patient’s bill of rights. That normally includes things like being heard and getting good care, etc. Today, I’m writing one for us to use for ourselves.

Here is the chronically badass patient’s bill of rights:

  1. I have the right to be sick, whether that’s acute or chronic.
  2. I have the right to get the best and most appropriate treatment for my issues. If you want to help, ask me first before you go spouting the latest diet/exercise/talk-show/starvation/self-harm/new-age/homeopathic/homoerotic/gluten-free-sex trend. Chances are I already know what I’m doing. I appreciate the sentiment, but just don’t.
  3. I have the right for others to acknowledge my illness, even ask about it, as long as they realize that I am not obligated to give answers.
  4. I have the right to be heard when I’m in pain. This can mean stopping an activity that is giving me pain with no questions or going to the emergency room when I need to.
  5. I have the right to use assistive devices that help me, without being questioned about being a walking wheelchair user or being able to walk without a cane.
  6. I have the right to nap. I’ve spent too long trying to keep myself awake when my body needed the rest because I didn’t feel as though I deserved it.
  7. I have the right to curse like a goddamned sailor. It helps with pain levels.
  8. I have the right to feel damn sexy. Sometimes that means dressing up and looking fly. Sometimes that means enjoying my body by myself or with someone else. No one gets to judge me for that.
  9. I have the right to say no to something and not feel guilty, whether that’s attending an event or talking about my illness or whatever.
  10. I have the right to treat myself, even if I live on public assistance. I currently do not, but I would not deny myself the occasional Reese’s PB cup because I’m getting a ‘handout’ if I was. (So much I could say here…)
  11. I have the right to have fun. Even if I feel like shit, having fun keeps me going. Should I be on the floor a lot? No, but crawling around after my guinea pigs keeps me young and happy and enjoying my life. Don’t judge that shit.
  12. I have the right to process my illness (or any other) issues as I see fit. If I want to be dark and brooding, let me. If I want to be Pollyanna, let me. Don’t judge or compare me to others. It may be easier for those who haven’t been abused or in a PTSD situation to be focused on the positive because their brains aren’t LITERALLY wired to think of the worst case (no I’m not fucking kidding).
  13. I have the right to be as involved in my care as I choose to be. Docs, this means you gots to get on board with us being partners in our care. You may get paid to help us, but you don’t live in these fucked up bodies.
  14. I have the right to get a second opinion about my care. Don’t get pissy about it.
  15. I have the right to be a person. I am a person before I am a guinea pig mother or wife or aunt or sister or patient.

What would you add?

Therapeutic Thursday: fight song

Monday morning I woke up to T watching music videos on VH1, mostly because I couldn’t sleep through the night and wound up on the couch.

I hate my shoulder.
That’s kind of become our morning though – watching music videos to prep for the day… well, that or I Love Lucy/Golden Girls. Either way.
We were watching videos and this Rachel girl came on to discuss her video about proving something to herself by writing this song. I didn’t pay enough attention to really hear. T mentioned that it sounded like a ‘me’ song. The video finally really started and he was SO right.
I’ve become addicted. My plan is to learn the chords well enough on short notice to play them at my upcoming concerts.
Listen to it once through. Then play it again and really listen to the words.
Here’s my poor over-simplification: The significance of one person uttering one small word and setting themselves free cannot be over expressed. I’m one person, but I can make a difference. I’m fine the way I am, no matter what anyone else thinks. People may worry but I know I’m on the right path. No matter what, I’ll fight to the end because I’m a bad ass.
Like how cool is that? It was a great way to start off a day with a meeting I was a little worried about. And guess what? I ROCKED it.

Terminology Tuesday: Kineret

 

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

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:

Terminology Tuesday: sed rate

Today we’re going to look at what exactly a sed rate is.

The term sed rate is thrown around a lot in autoimmune or autoinflammatory communities, so it’s really an important one to wrap your head around.

You may see sed rate listed one of many ways – sedimentation rate, westergren sed(imentation) rate, erythrocye sed(imentation) rate, or ESR. It’s all the same thing, which is nice. In short, this is one way to monitor the level of inflammation in your body. As you can see in the graphic above, the higher the sed rate, the higher the inflammation.

This isn’t disease specific, which rocks and sucks all at once. It rocks because this test can be used to help monitor and treat SO many people. It sucks because, well, infections and other acute illnesses can cause high inflammation levels too. I got a call from my rheumy in March when I had bronchitis (before it was actually diagnosed) because my levels were crazy high and she was worried. Things like being full o’ babies or female or anemic can affect it too.

The pill can up the levels too. So that’s fun. Remind me to ask about birth control alternatives.

Do you ever wonder how these tests are really done though?

So do I!

Lab peeps stick your blood in these crazy tall tubes. When I was studying chemistry I totally broke one. It’s not easy, but clearly that didn’t stop me!!

Anyway…

Your blood gets placed in these tubes and checked on after an hour. Your red blood cells eventually sink to the bottom, which happens even faster if you have high inflammation levels. Basically the test is like one of those race games at the fair… except not one you want to win.

Hopefully you don’t bust the tube!

The faster your cells hit the bottom of the tube, the higher inflammation you have.

Because the test only takes an hour, it’s a quick one that generally isn’t costly either. If you live with a rheumatic/autoimmune/autoinflammatory disease, you likely have this test monthly. It’s a great way to measure general inflammation but, again, isn’t so great for certain people or for telling you where the inflammation is. My guess is, though, that you can usually figure that one out.