Sunday, May 31, 2015

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, but you can remember this no matter what:

Thursday, May 28, 2015

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.

Wednesday, May 27, 2015

Post-G8 fun

I'll have to talk about the experience in a different post, but I had an amazing time at the G8 Arthritis Introspective Gathering this weekend! It was the first time I've felt truly comfortable in my own skin, because I think I've always kind of denied my illness issues to myself. This blog has been my safe space, but now that's expanding into real life where I'm putting faces to names.

Even more importantly, I'm meeting amazingly inspirational people.

And now... I'm paying for it.

Sunday was a rough day. I partied a bit on Saturday, by which of course I mean I had a drink (which I did Friday too!) and ate THREE deep fried cheese curds despite being gluten free... Sometimes it's okay to break some rules if you feel comfortable with it and know the risks. I thought my aching body Sunday morning was just penance for the curds and the humidity.

Sadly, it carried over into Monday, leaving me on the couch most of the day... except the obvious movie date!

Cue my swooning ovaries.


Yes, yes it is.

Um, where was I?

Oh yeah. So what I thought was more fibro pain is clearly Arthur pissed beyond belief at me. He let me play with my friends and discuss him negatively all weekend, but now I get to play his game.

The game of prednisone and athletic tape, NSAIDs and pain pills, naps and using sexytimes pillows to prop up your knees.

More on that another time for sure.

Today I'm trying to rest so that my body can deal... which means I'm trying to ignore the long to-do list that I wrote for myself... it's not going so well honestly.


For now, I'm going to think of the pred as my personal Tom Hardy, fighting the baddies.

Maybe Bane is a bad example, but his heart was kind of in the right place. I mean, he wanted to rid Gotham of all the corruption... just by blowing it up.

Mad Max could work too.

Note to self: watch some more Tom Hardy movies this week.

Thursday, May 21, 2015

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?


Hey, you should TOTALLY come hang out in Milwaukee with me and cool arthritis peeps over this upcoming long weekend! Amazing people like Britt the Hurt BloggerKenz, Melissa from 710.9, and FitAimee will be there!

Wednesday, May 20, 2015

Wacky Wednesday: silly pictures from them internetz

Perhaps you, like I, are in need of a good laugh. Look no further than these ridiculous Google image searches!

Can you guess my favorite?

In other news, here are silly pictures I've found recently on Tumblr and elsewhere on them internetz:

Hey, you should TOTALLY come hang out in Milwaukee with me and cool arthritis peeps over this upcoming long weekend! Amazing people like Britt the Hurt BloggerKenz, Melissa from 710.9, and FitAimee will be there!

Monday, May 18, 2015

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!

Hey, you should TOTALLY come hang out in Milwaukee with me and cool arthritis peeps over this upcoming long weekend! Amazing people like Britt the Hurt Blogger, Kenz, Melissa from 710.9, and FitAimee will be there!