Self-care Sunday: saying no and resting (aka flare up essentials!)

It is so hard for everyone to create boundaries, but especially those of us with chronic illnesses. We often think that we have to overcompensate for our “shortcomings” or illness issues by taking on too much and not saying no enough. We all have to learn that no isn’t a bad word – it can really save us as long as we practice.

One of the things that I learned at AI last weekend was how important it is for us to not only say no but to REST and get help. Those aren’t always things that we’re good at – heaven knows I’m not! – but they’re important skills for us to have. Another huge thing we need? To stop pushing ourselves so much. If, like me, you’ve worried about how people will perceive you then, don’t. If someone truly cares about you, they’ll be glad that you take a time out when you need it.

Right now that is something that I’m practicing. Despite the fact that I’m flaring, I really want to do more things to prove that I’m still able. One of the hard things with chronic illness is that your body isn’t quite as dependable as we might like. Right now my abilities are changing moment to moment, and that’s really hard to mentally process… especially if you’re into having control. Of course, a huge part of that too is wanting to believe or prove that we aren’t lesser beings for being ill.

If you feel that way often, please recognize that it’s okay to want to talk with a therapist. There is such a huge mental health stigma in our society and it scares many people away from getting help they need. If you’re in that boat, please don’t feel afraid to talk about what you’re going through even if it is just with a trusted person in your life or with the spoonie community online in an anonymous format. If you’re feeling bummed, there are a lot of fun things you could do to momentarily cheer yourself up. I’ll add another – cake!

Maybe you need some tools to help you rest instead. I love this post from Buzzfeed on cool websites. My favorites are this 60-second meditation website, paint with sloths (does this even need an explanation??), The Office Stare Machine, and Calming Manatee.

So this coming week, let’s try to work on ways to say no and ways to rest up when we need to. It isn’t always easy.

Therapeutic Thursday: flashback central

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

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?

Meditation Monday: Happiness, Fun, and Your Life Purpose

There are so many things that we can do for ourselves in a healthy way to feel awesome, from experiencing and giving love to practicing mindfulness. Something as simple as getting outside when you can is really calming and healing, but so is playing and giving back to your community or friends.
Probably the biggest thing we can do to feel healthy is to make changes for the better in regards to our emotions. No one handles their emotions perfectly. That’s part of having emotions, isn’t it?
Changes can be as simple as deciding to recognize your beauty, inside and out (which can include faking it!), or setting new rituals for your morning. If you need help loving your body, check out this 7-day challenge from Blessing Manifesting.
For me, it’s recognizing something that I’ve wanted to do for a while.
Finding your life purpose is not easy, and not everyone gets there. I’ve been going through some things lately that help signal that I’m ready for a big change.
I’ve been looking for several months at an MA program in health care administration with a focus on advocacy and navigation. I’m excited to say I’ve started the application process!
This is a big step for me. I’ve been leery of graduate school since my experience with a division of the school I now work for. Going to school in person isn’t something that I can do between work and my health. It’s not feasible right now.
But this online program looks amazing. Even if I didn’t do something related to advocacy with my day job after completing this degree, it gives me more options for employment – and especially to help make some real changes to my local health care systems.
More to come on this as I hear more! Hopefully I get in!

Self-Love Sunday: allowing yourself to feel emotions

I was just talking with my sister about how I don’t like how our society handles the word strength. We tell people to be strong during hard times, essentially telling them to stuff all the negative or sad emotions they may have during that time way down and ignore them. And we comply.

We may go to therapy to get out those emotions instead of expressing them to others. We may take up martial arts or be gruff with others. We stop communicating as we should, insulating ourselves from anything that could possibly hurt us. We act tough, manly, impervious to problems around us.

Why do we do that? Why do we deny ourselves the ability to experience our emotions?

I have learned that I can’t do it anymore.

A long time ago, I was told to be strong by several people. I think it started when I was first sick and everyone thought I was dying. I saw how much it hurt others if I ‘bothered’ them with how I wasn’t feeling well. That continued on and I didn’t really speak up for myself.

I held in emotions, becoming frankly a giant asshole. Kelsey would do something silly like spill water on me and I’d go off and get angry instead of playful.  I’ve not always been a nice sister, or person for that matter. I’m coming to terms with the fact that it’s okay. No one is perfect. Kelsey and I have done a lot to piss each other off – but we’re always there for each other when we need support, and that’s the point of sisters.

I have learned that holding in emotion is literally toxic for me. If I have a big emotion and don’t express it but instead hold it in, it causes a few of my chronic pain illnesses to act up. Then it turns into a cycle of holding in emotions and getting worse and worse.

That’s a big part of why I’ve been writing more lately. Getting out emotions and writing things to remind myself what to do has been really cathartic.

I’ve written a lot about dealing with my childhood recently. It’s being a really difficult process. Everyone acts like there’s no way dysfunction goes into abuse or that they’ve experienced it. There is no normal, but there is definitely a point where dysfunction is much more than that.

As a part of all this, it’s important for me to get emotions off my chest. I’ve written before about how healing music can be for me, so I’ve put together a playlist to handle those emotions when I’m at work or in situations where music is allowed but it may not be the time/place to deal with things otherwise.

I hope you enjoy the collection of angsty music with a little ‘I’m worth it’ music thrown in.
On another note, T came with me to therapy this past week. I made a lot of progress because of it… and cried a shit ton.
I’ve realized that I can’t build new relationships with family without dealing with the traumatic experiences that I’ve been through. They help me hold onto a lot of anger, which makes me hold back on sharing emotions or information.
I also really realized that, no matter what happens, I will always have T & Kelsey & those cute niblings.
I’m lucky to have amazing close friends and family that help all over the place, but y’all are icing on the cake.
What are some ways that you enjoy getting emotions out?

Freakout Friday: the problem with hope

I’ve had a couple of friends get picked on lately for this same view and I just don’t get it.

As I mentioned before, hope is a four-letter word for me (the bad kind, duh).

I want to elaborate on this, because it just keeps happening. First let me be clear – if hope works for you, awesome! I’m so happy for you and excited that you’ve found something that works well.

A lot of us, especially those who struggle with mental illness as well, can’t hold onto hope that same way. So the view that hope is eternal and crosses boundaries to help everyone is bullshit.

Sorry, but it is.

Hope is inactive. It leaves things up to others, whether that’s gods (prayers) or helpers. When we hope for a cure, we wish, but don’t act. Hope is wishy-washy. Hope is a go-to if we’re just trying to be polite, not genuine. Hope is passive, requiring no work and no acknowledgement of the dedication and tears and sweat that go into things. There is no timeline, no plan, no certainty that the task will ever be accomplished.

Belief, instead, is active. If I believe in something, I will throw my support behind it. I will do what I can to help that task get accomplished. It isn’t always focused on the positive. It’s an affirmation, a strength. With belief comes a degree of certainty. You may be wrong, but you believe in something.

Hope is impossible to maintain at all times.

Let’s be real here.

When I have been in so much pain I can’t see straight, hope doesn’t keep me going. Hoping that I feel better tomorrow doesn’t cut it when you’re dealing with certain pains and a lifelong, incurable disease. You know what does? The belief that the loved ones in my life need me and want me here does – that playing with my guinea pigs makes a difference in how they feel or helping my sister with her kids and her journey to healing from our horrible childhood or my niece tickled pink when she sees me on Skype or spending time with my close friends and us supporting each other or my husband holding me, telling me things WILL get better, or even just that he loves me.

Those things get me through, not a distant idea of hope or blind faith. Real concrete things that are in the here and now.

I believe a cure will come. I believe I will get better, and that belief is somewhat manifesting itself right now. I believe that I am different – I respond to meds or emotions or experiences differently than every person on this planet. I believe I am unique, as we all are.

None of those require ‘hope’ – let alone hope all the time.

When I was living with my mother and would get incredibly sick, I had to put on a happy face for others. I had to look my best or look like death – no in-between. I had to carry-on in the face of crap instead of taking time for myself.

Hope requires a similar covering-up of emotions, and I refuse to do that to make anyone comfortable, even myself.

Only choosing hope and not showing the negative, which isn’t necessarily what this is about but hear me out… It’s bad for those of us with invisible illnesses. We dress well and look happy to hide our illnesses like a prey animal, only to get upset when others don’t realize we’re sick.

Should they stop accusing others and deal with the fact that invisible illnesses exist? Duh. But we also need to stop always trying to cover up how we’re doing.

Happy smiling faces won’t raise awareness or get us funds for a cure.

Only talking about the real things we go through will do that.

Telling people to always choose hope is also ableist. I touched on that a bit at the beginning of the post, but let’s explore that connection between that and classism…

Did you know that 20% of adults in the United States have some type of mental illness? Many of those have multiple mental illnesses like yours truly. Those with physical chronic illnesses are more prone to mental illness due to the difficulties of dealing with their bodies. I think it can be assumed the rate is at the very least close to 50%.

There are also studies out there that certain illnesses like fibromyalgia tend to occur not only in conjunction with other diseases but also in higher rates in people who have experienced abuse, major accidents, or other traumatic experiences.

One group that I’ve seen tend to have all of these issues is adult survivors of child abuse. It’s been proven that child abuse rates tend to drop as income in the family rises. Abuse rates are highest when living with a mother who is either single or living with a man other than the father (in Britain at least, but I’d argue in the US as well). As we see in the links above, there is a strong correlation between childhood abuse and fibromyalgia rates (as an example).

If we, then, compare the ideas of those in low income, single parent/breadwinner situations being high homes for abuse and the rate of fibromyalgia in abused children, we could decide that lower income people tend to develop chronic illnesses more often (and that’s not just my idea or just fibro).

As someone dealing with PTSD from my childhood, which no doubt is also the cause of my depression and anxiety (and the eating issues I’ve had in the past), I’ll gladly share about my childhood.

My mother starting really dating when I was 13. She dated a few guys, only three that really spent much time with us. One is her current husband, another is the man who assaulted me, and the third was a jerk I think she saw to get back at the second honestly.

I came home several times from school to eviction notices on our door. We ate crap every single day because people were too lazy to cook. If we did eat at home, it most often happened because someone was coming over and we wanted to look good for them – or because sis & I decided we didn’t want to eat the crap and would make food.

There were times we didn’t have enough to eat. We used powdered milk. I ate sandwiches that were nothing more than ketchup and mustard because we didn’t have enough money to have much meat let alone other sandwich fixins.

A kid dealing with malnutrition, living in poverty with an unstable home life (as I’ve discussed my mother & grandmother’s epic fights before, I’ll refrain for now) and witnessing abuse/being abused is ripe for chronic illnesses.

That doesn’t mean that if you’ve lived a healthy and happy life that you won’t get sick.

Here’s my point from all this.

I’ve lived in poverty and dealt with abuse, which leaves me with my mental illnesses – mental illnesses that make it near impossible to always look on the bright side. My PTSD keeps me on guard, always worried about my safety or the safety of those around me. I’m hypervigilant, which means I see things in a room or situation that people who have lived without abuse don’t necessarily see. This is all stuff that served to protect me in the worst situations. The problem with PTSD is that your brain doesn’t shut those defenses down once you’re out and safe. I don’t need the force once the empire has been defeated.

My mental illnesses make it hard to use hope. Neither that nor the fact that I have them are shameful. Those I see trying to push hope or always being positive haven’t been through some of the hard things that my friends and I have been through. There are no hard feelings there, unless you’re someone constantly pushing hope.

It’s ableist against those of us with certain mental illnesses. It’s classist against those of us who grew up in hard situations like poverty. And it’s inconsiderate of others to demand this one size fits all way of dealing with illness.

Every person is different. It’s true with meds and it’s true with how we process our illnesses and feelings. I won’t judge you for the way you deal with things if you stop judging others like myself who can’t process that way, if you stop requiring everyone follow your ideas.

 

Therapeutic Thursday: life changing tips and thoughts

Sometimes we initiate change and sometimes change decides to pop in. The beauty is it really doesn’t matter how the change in your life occurred, but more how you handle it… because everything changes.

For some, it takes a major illness to make changes for the better.

Others find out ways to change their lives to work towards their dreams. Do you ever wonder what it would look like if you did that? We may not know for sure the path we choose is the right one. We may not feel we’re worthy of the change. We may not be able to make our changes full time. If we embrace our fears, we can make it through – especially if we live with more intention.

If you’ve made changes, maybe you’re feeling stuck or ready to quit. Just remember that you can do this. You may have to stop expecting so much of others, which I know is SO hard. You may need to keep your assumptions in check.

Embrace the tough times.

Let go of the healthy things other seem to require.

Take some time to nurture yourself, to take time to do nothing, and remember that this is your life.

What changes are you having a hard time with?

Medical Monday: Link Roundup!

I’ve been saving so many articles thanks for facebook’s saved links feature that it’s time to dump them all!

Perhaps the most pressing and scary thing I’ve read in a while is this piece on mortality in systemic JIA. SJIA kids are five and half times more likely to die due to complications arising from our illness than our non-systemic JIA counterparts.

I don’t even know what more to say about that.

There are also certain genetic variations that not only predispose people to autoimmune arthritis but could also point out the course of the disease – including if you could die prematurely.

Let’s move to something more fun. Have you seen these cute empathy cards for serious illness??

They’re adorbs and I need to buy all of them like now.

Is there a problem with tracking patient satisfaction in their care? Alexandra Robbins seems to think so. She argues in this piece that surveys like the HCAHPS for hospital care mislead doctors into believing that they’ve really helped the patient when it ends up turning into a popularity contest.

If you’d have asked me six months ago, I don’t think I would’ve given this article much thought. Now, though, I see the popularity contest in the numbers for the docs I work with. Some of the highest rated docs have horrible preventative medicine metrics. Are they being rated highly because they aren’t pushing patients to get their best care to prevent issues in the future? It could be.

Of course that’s a little misleading as I work with primary docs and not in the hospital, but it’s the same sort of idea isn’t it?

I found this piece on plaque psoriasis by Jonathan Scott of the Atlanta Falcons interesting. It’s not often we see football players speaking out about health issues unless they directly relate to football… unless of course you count the months of pink out to raise tons of money for a poorly managed cancer organization.

It’s been 25 years since the battle to get the Americans with Disabilities Act (ADA) passed. Here’s a review of what has changed from the eyes of someone who was actively involved in protesting. I think my favorite part of the whole article is when he talks about where our problem areas still lie. Children, soldiers, and those with mental illnesses face more stigma than some with less resources to help. There is also the socioeconomic and racial aspects to things.

This is a little on the late side, but this TED talk from Pediatrician Elliot Krane at Stanford University is incredibly interesting. In it, he discusses chronic pain using an allodynia in a teenage girl. His frustration is how difficult it is to treat this pain. We use drugs to cover up the symptoms along with various therapies to treat chronic pain.

Speaking of pain, there is currently a trial in the works to see if sea anemones can help stop white blood cells from freaking out and thus treat autoimmune diseases. It’ll be interesting to follow this and other surprising new medication options.

Autoimmune diseases seem to be being diagnosed more lately. Is it an epidemic? Personally, I don’t think so. I think we’re getting better at recognizing signs, testing, and treating these diseases. AARDA got some great exposure in that piece regardless.

Ever get frustrated with how little people are interested in hearing your story unless you’re possibly dying quickly? You’re not alone. And the frustrations with those who advocate holistic approaches without knowing anything about your illnesses? Yup.

Did you see that Phoenix replaced their accessibility symbol?

I love it. There has been a push for quite some time to get this adopted internationally as it emphasizes ability rather than disability. Hopefully this change helps the movement gain traction.

There have been so many stories lately about people putting notes on cars in lots accusing the driver of not being worthy of utilizing the accessible parking. Here’s the latest one. And for good measure, here’s a great story about a woman dealing with shopping for her wedding dress while having a port, causing raised eyebrows and jerky responses.

Have I said how much I dislike people sometimes?

Ugh.

Maybe all these note leavers need to read this comic which discusses how hard it is to live with invisible illnesses.

Or maybe they need to learn the nice things to say to someone with a chronic illness.

It also probably wouldn’t kill them to read up on helpful things to do when someone they know is pretty ill.

What post about the medical world would be complete without Doctor Who quotes?

Happy toxic bitches day!

Seriously though, happy mother’s day to you awesome ladies out there.
For you not so awesome ladies?

If my recent post on the crud with my mother resonated with you, today may be a pretty rough day for you. I will freely admit that it is for me, mostly because of the expectations that you be with your parents on these made-up holidays to celebrate their sacrifices.

Not all parents are worthy of such admiration.

Parents also need to understand that every little sacrifice they make isn’t on the kid. That’s an adult choice and shouldn’t be held over your kid’s head.

To clarify, we kids didn’t ask to be born right? Parents knowingly engaged in something they knew could bring about kids, trying or not. They knew what they could be getting themselves into.

A good parent is selfless and doesn’t need these cheesy ass candy company holidays.

On that note, check out the links below. Some of them are parent specific, but a lost of them focus on self-care/love after rough patches or dealing with toxic people.

We can start with those darn parental units.

I shared this post about rough mother’s day issues on my facebook page the other day. It outlines a few ways mothers specifically can be abusive. I have to say that my mother falls into each of these categories, which is kind of frightening.

Sound familiar? Here’s another story on growing up in a similar situation and another on how the cycle of abuse works for abusers.

Being someone who is empathic or can easily cultivate compassion for others is really hard when you’re in an abuse situation as this article discusses. This woman discusses how her mother’s death and the resulting PTSD led her to develop more compassion.

Perhaps your abusive situation, past or present, surrounds more of an intimate relationship like this. It can be so hard to get out, and it doesn’t help when people judge or make decisions to ‘help’ that actually can put you in more danger.

For some people, friends are the problem. Perhaps you have friends that don’t respect your time or dominate conversations always. One way among others to work on this is to express yourself, but that sadly doesn’t always work.

Perhaps the first step to healing from this type of toxicity is to learn that you are worthy of saying no. You not only have it in your power, but you have a right to stand up for yourself. You are worthy of love, and if you’re not getting it, get out!

In the healing process, I give myself pep talks. It’s perfectly normal and we all do it from time to time. For me, it’s just a little more constant right now. I have to reassure myself that I’m on the right path in many things, that I’m worth the good choices I’m making, and that it doesn’t matter if I’m quirky.

My quirkiness is what kept me alive. My quirkiness is what makes me fun to be around. And I’m not ever going to cut it out.

It took a lot for me to get so comfortable talking about what I’ve been through. I’m still really realizing some of it.

When I started therapy again a few months ago, I set a goal with my therapist that I really want to learn who *I* am. That requires really dealing with the experiences I’ve had and putting myself back together… even though one could argue that I’ve never fully been ‘together’ to begin with. I have to take the power back and control my own life. I also have to be patient when that doesn’t move as quickly as I would’ve wanted.

Because of the fears that were instilled in me as a child, I have pretty good anxiety. It can be really hard to deal with, although medication is helping. I still get overwhelmed in crowds, but I’ve also learned to embrace and lean into that uncomfortable situation. I’ve learned that it’s okay to not be okay, and I’m okay with that.

I believe that self-care and self-love can change the world. I believe that it has changed my life for the better. If I bug you personally about self-care and love, it’s because I care about you and want you to be well and happy and all that good stuff.

It also allows me to be a bitch when I need to be, and I’m kinda loving it.

Perhaps the biggest thing for me was starting to date myself. I mean, how could you love yourself without a courtship phase?

You really can’t.

Do I love myself fully? Not yet, but I’m getting there. I’ll continue to keep dating myself until I find that place. I hope that you do too.

Don’t know where to start on self-love? Check out this link. Learn about the power of self-worth. Read those quotes on strength.

Take care of yourself today. Please. Treat yourself the way you’d treat your closest friend – with compassion, tenderness, understanding, and love.