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.

World Autoimmune Arthritis Day is coming up!

While historically World Autoimmune Arthritis Day has run as an online convention, this year the event is really revving things up and hosting it in the form of a global race around social media and the internet! Not only will a Global Race Map send you to find helpful resources, but you will be invited to participate in live webinar chats (or “Detours”) and awareness activities (“Crowd Rallies”) sure to put our diseases on the map!

You don’t have to register to play, BUT you should. Part of registering means you can choose foundations to donate money to like the Arthritis National Research Foundation and/or Creaky Joints.

Another reason you should register? You can pick teams! Team Not Standing Still’s Disease definitely would love to have you race with me and all our sick peeps! It’s free and SUPER easy, just go to the website to learn more and register.

When you see “Why Play WAAD15 Alone? Play with Others!” on the registration page just type Not Standing Still’s Disease in the box. Then “like” and “follow” the WAAD social media pages for updates on all the cool, live things to do during the event.

It starts on the WAAD Facebook and Twitter pages at 12pm ET/USA on May 15th and runs continuously for 6 days.

See you in the pit!

Meditation Monday: Reflections on the best year of my life [super long post]

A year ago today I said goodbye to my mother.

Don’t get that wrong – she’s very much alive.

When I said goodbye to her, it was on my terms. She uninvited herself to my wedding towards the end of our conversation: “I’m going to do us both a favor. I hope your day in August is everything you want it to be.”

She tried to tell everyone I didn’t invite her because I’m a liberal snob (I wish I was kidding) but those words stick in my head to remind me that it wasn’t my choice.

My mother is someone that needed (needs?) a lot of therapy for the things she went through growing up and she never got it. She thinks that is a sign of weakness anyways. She had concerns for how much to share because, after all, the environment she grew up in was all about looking perfect on the outside and not exposing any dirty little secrets to anyone, something that tends to follow certain religious sects.

This is also an environment she created for us.

She grew up in a world where discipline was doled out by the handful, with physical violence and screaming matches the norm. She had to help raise her siblings when she should’ve been being a child. She dealt with abuse not only from her mother but from others outside the family as well.

It’s a sad story for sure. However, none of what she went through excuses how she perpetuated that cycle of ‘discipline’ and abuse towards her daughters.

You all know how I feel about secrets, and this family situation is the biggest reason why. If someone – anyone – had shared a secret along the way, perhaps my mother could’ve gotten help she needed – and her mother before her. Alas, mother refuses to even get help with her physical health issues that could be life-threatening, so mental health issues are far behind on the priority list.

It’s not worth the interventions I’ve staged, the false promises, or the fights. And that’s really sad.

I wish they weren’t. I wish things were different. I wish I didn’t feel so much like an orphan who had to raise herself and help raise her sister… and to some extent, her mother really.

With my sister moved away and me out of contact with my mother, I feel so much like an empty nester who gets to accomplish things she always looked forward to now.

It’s such an odd feeling at 27.

I very much wish that we had been allowed to have a more normal childhood. I wish having normal relationships with other children happened instead of the abuse at the hands of other children that we went through – and instead of the emotional incest and oversharing about sexuality we endured from the adults in our home… and the physical abuse. (EDIT: want to learn more about this type of parenting? Click here – Kels & I could practically have been these kids.)

I wish that I hadn’t been told the absolute worst would happen if I did xyz… I never was abducted for playing outside. I never was harmed by a stranger offering to help. Because of the apocalyptic views, I grew to have horrible anxiety attacks to the point where I couldn’t sleep at night because that’s obviously when crime happened. If I slept, someone might have snuck into the house and hurt my family.

That continues off and on still.

It probably will for the rest of my life.

And I fucking hate it.

People say what doesn’t kill you makes you stronger. I have enough strength already – I did growing up. I don’t need my illness crud or current family crud to add to that, thanks much.

That said…

From the moment I stopped having a relationship with my mother, I gained strength. Emotionally, I began to process and accept what I have been through – something that I will have to work on until the day I leave this earth. I began to mentally deal with the abuse I’ve been through, which is a similar process. Recognizing what is and isn’t abuse is hard. So many people write things off as dysfunction because we refuse to believe or deal with what’s in front of us.

I also began to physically decompress from all the stress of my whole life. My body isn’t perfect. I’m still sick. I still have to take and switch meds to get better and better (eventually). However, I’m feeling the best that I have since I was just starting college. I’m able to be physically active and not have to pay for it afterwards.

Heck, if my labs weren’t awful, I would think remission was close at hand.

The amount of stress a relationship with my mother causes physically alone isn’t cost effective. If we add in those emotional bits, it’s like trying to be bffs with Voldemort.

In the last year, I have taken my life back. I’ve done things that I’ve always wanted to do, from traveling alone to meeting my dad and starting to become a part of that family to getting married to my best friend to getting an amazing job and moving to visiting my sister on the west coast and trying to take her mind off things to truly learning who I am.

I’m a wife, piggie momma, awkward daughter, sister, good friend, quirky feminist, gamer, writer, musician, hard worker, fun person, a fixer… I could go on and on.

Perhaps the most important thing I’ve learned is who I am not and what I will not do.

I am not a victim. I refuse to play that part, despite all the shit I’ve gone through, because I see where that leads me in my mother and grandmother. I am not an abuser. I am not a scared little girl who will keep quiet because of threats. I am not someone who can be lied to and conned into believing everyone else is awful or that everyone else is to blame for our problems. I am not gullible nor am I a liar. I am not someone who will choose a religion when it’s convenient and turn my back on it in better times. I am not perfect and I will not pretend that I am. I will not even set perfection as a goal anymore because it isn’t realistic. I will not threaten my loved ones with my suicide when things are tough. I will not lean on my future children to be my best friends instead of raising them. I will not neglect my siblings or niblings, no matter what comes. I am not someone who feels entitled to everything. I am not someone who would allow children in my care to be abused by others and do nothing about it. I am not someone who will badmouth everyone behind their backs, only to act like they’re amazing to their faces. I will not neglect or beat animals. I will not bow down to a man I act like I need to run my life. I will not spew bigotry and argue why others should believe as I do.

Who I am, quite simply, is someone who chooses to live in the present, who wants to help others and to do the most right things, and who loves with her full heart.

Most of all, through all of this rebuilding, I have discovered that I am worth it. I am worth the efforts I take, the money I spend on such things, and the time I use on myself.

I guess the thing that bothers me the most is that mother and grandmother refuse to even acknowledge that there could possibly maybe be a hint of a smidgen of truth in what I remember. But like, they also don’t remember a whole lot, so… whatever. That’s irrelevant. If you’ve hurt someone – even if you think you didn’t – you apologize and learn about it so you don’t do it again.

I am sure that, as usual, my mother will throw a fit about this post.

Despite the fact that I’ve made it clear that I don’t want her in my life, she continues to ‘check up’ on me online. It bothers me that she gives no fucks about my wishes, but it doesn’t surprise me either given the last 27 years of crap.

Nothing does at this point.

While it pisses me off that she won’t let go, I refuse to stop blogging or talking about what I’ve been through – especially after all the sweet things that I’ve been told lately by readers on social media about how helpful I have been… and especially with big things in the works for me. I refuse to tear down this mini-empire of helpfulness that took me so long to build and to get recognized.

I’m meant for too many amazing things to let someone like this stop me. That’s not being cocky or self-centered either – it’s called confidence.

I will continue to be me and to live the life I was meant to live – one where I love myself and help others to learn to do the same, despite these dang illnesses or issues stemming from abuse that we deal with every day long after perps are out of the picture.

I won’t hide myself to make the lives of others more comfortable, not ever again.

Someone asked me how I’ve been able to cut contact with my mother, which is a great question. Cutting contact when I did, right before getting married, was difficult with the expectations from society on mothers’ and fathers’ roles in weddings and such. So much to say there for another day.

It’s very simple really. Any time I thought maybe I was on the wrong path, I pictured a vivid scene in my mind – usually having to do with my sister.

It’s mother picking on my sister, telling her to grow a sense of humor because mother making fun of her wasn’t something sis thought was funny.

It’s when our uncle would take my sister and me to the other side of the house and cover our ears, but we could still hear mother and grandmother screaming threats and horrible things at each other – and sometimes physically assaulting each other as well.

It’s my mother continuing to sleep with someone who sexually assaulted me, long after I told her about it, and making excuses for his actions. It’s forcing me to be around him after she promised I’d never have to see him again. It’s not believing what I’d said until Kelsey saw him try to drunkenly kiss me. It’s forcing us to lie, to say we were his friend’s kids when we stayed at his house with his WIFE there.

It’s my mother telling me she’d let me marry my high school boyfriend at FIFTEEN when he turned 18, and to start asking the extended family for wedding tips, only to laugh at me afterwards.

It’s her sharing very personal things with the extended family, like when I lost my virginity or started my period.

Most often, though, it’s when my sister would be beaten. I tend to think of the times she was beaten with the buckle end of a belt while I hid and cried. You could hear the blood-curdling screams through the house. It’s a scene I can’t describe – one that always makes me cry no matter where I am or what I’m doing.

I never wear belts, and this is why. I can barely look at one without thinking of this – something I know is from my PTSD.

No child, no matter what they have done, deserves to go through what my sister has been through at the hands of my mother alone. Add into that what other children did to her and I’m very lucky that she’s still alive – and still my best friend.
I’m still not sure how the cops weren’t ever called to our house. If more people called when they heard things like this, so much abuse could be prevented. I find myself angry with people who easily could’ve gotten us help. I know it’s misdirected, but still. As someone who is hypervigilant due to the abuse, it’s hard for me to not get how others didn’t see these things. It was so obvious.

 

It’s been the most validating thing to have people I knew in middle and high school contact me throughout this to let me know that they always sensed something off, but didn’t know what to do or how bad it was. To know that sane, normal people see this too as abuse is amazing.

And then there is my therapy and how much that is helping. I’m getting new ideas, new ways to cope with all this crap.

One of the ways I’m dealing with these experiences is to tell my story here, but also to tell my story on my body.

The mother’s day after cutting contact with my mother, I got my first tattoo – the stars from the pages of the Harry Potter books. They mean so much to me. I love Harry Potter for many reasons – the triumph against evil, abuse, stalking, etc. The stars on my foot remind me that I write my own pages now and that I’ve turned the page – and will always keep moving forward. They’re also a reminder to not put up with Dursley-like abuse any longer.

 

I just recently got two more tattoos.

Heart from the Heart & Brain comics is SO me, from the impulsive and silly attitude right down to loving Batman. He now adorns my right shoulder. I’m also treating this as a tattoo for my niblings between Sam’s congenital heart condition and Marissa’s love of superheroes.

I also have this on my left wrist. It’s is a little tricky to explain.

I’m not religious, but I consider myself spiritual.

In any case, this tattoo has nothing to do with that.

I see so many people with illnesses getting tattoos that include the word ‘hope.’ I know it sounds weird, but I hate that word. Hope is so inactive. It leaves things up to the universe or deities or others. When we hope for a cure, we wish, but don’t always act.

Believe, instead, feels 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.

I choose believe over hope also because hope is so up in the air. There is no timeline, no plan, no certainty that the task will ever be accomplished. Believe comes with certainty – something that I have regarding cures to illnesses.

Simply put, to find cures and better treatments or raise awareness, we must act and engage others. We cannot sit idly by while researchers and doctors don’t hear us or act on our words. We cannot hope it will be better without taking actions to make it so.

This serves a dual purpose too. Blue is not only the color of the arthritis ribbon, but also the one for child abuse. My foot and wrist will always remind me of where I came from and where I’m going. It reminds me that I’m a survivor, not only of my physical illnesses but also my mental ones stemming from the abuse.

It tells me to believe the very real things I remember, no matter how hard they are to believe.

Combined, they all remind me to be myself, to be real, to believe that I’m worth those actions… and to always be Batman. Duh.

This is probably like 5 blog posts rolled into one. Brevity isn’t always my strong suit.

Anyway.

Today is my independence day.

I’m going to enjoy it.

All the things I’ve done over the past year have been amazing, and it’s wonderful to know what life is like when you’re not paralyzed by fear… or as much fear anyway. It took me hours to build up the courage to call someone last night. But when that someone is your dad and you’re practically in the courtship phase of your relationship, it feels hella awkward sometimes.

That’s especially true when you still don’t get boundaries, normal relationships, and all those things you should learn through socialization or family.

In the end, all that matters is that my family and I are happy and healthy. We’re all working through some fucked up shit honestly. Mother can sit there and try to lie to everyone, as usual, to get them on her side and to make her the victim. Grandmother can do it too. That’s fine. For me, there aren’t sides – there’s the truth and the lies, and I know where my family of choice and I stand in that.

Therapeutic Thursday: physical edition

I haven’t done my Cimzia shot since… um… like the beginning of March? Maybe earlier?

Yeah…

Part of it is that I had bronchitis and had to skip a shot for that, and then I was out of the state for Sam’s surgery and my shot was not even close to the top of my priority list.

The other side is that, of course, it’s not working well anyway.

It’s hard to admit, but there it is. I end up with side effects for 3-7 days, have an okay week, and then just have to inject again. It’s counterproductive to have a shot that causes more problems than it solves – and this hasn’t done well at all for reducing my inflammation.

I had labs when I got back from Cali that showed an increase in my CRP and my sed rate – even from when I had bronchitis. Clearly, even though I feel well right now, I need to have a medication.

One of the reasons I switched to this rheumy in the first place was because my old rheumy’s office would not consider the SJIA/Still’s specific medications like Actemra or Kineret for me. It was frustrating to know that there were medications out there that would likely help me more and they instead put me on a third TNF drug, which is not very common. They generally move on to another class once two of a certain class of drug has failed to work for you.

The rheumy asked, via MyChart, if Kineret would be something I’d be willing to do. I sent back a short list of meds, and she sent back more info on Kineret. It sounds like that will likely be my next step.

The thought of going from bi-weekly shots that I dreaded to daily shots doesn’t quite have me enthused… but in comparing the drugs I suggested, this one does look as though it will be the best for me for what I need right now.

So today, I get to meet with my rheumy to discuss… and then have a meeting with my therapist right after to prevent the mental breakdown that almost always seems to accompany a change in medications.

It’s a good change, but it’s another point where it feels like I’m a failure. I know logically that the medication has failed me, but lingo always points to the patient failing the drug.

Cimzia was never going to get me to remission. It helped mildly for a short time, but wasn’t in it for the long haul, and that’s okay. Kineret could be, for me, a shot at remission. I’m willing to deal with the risks, to put up with mild injection site reactions and daily shots, for the chance at a more normal life.

 

Meditation Monday: When your dream dies…

I subscribe to Tiny Buddha and love getting their daily mailings. I’m sure you’ve noticed, because I’ve shared many with you. I also recently finished reading Lori’s first book and will definitely be sharing about it in the days to come.

Recently, one of their articles REALLY hit home for me – when your dream dies and you’re not sure what to do next.

Back in late 2011, when I had to make the decision to stop going to graduate school due to multiple illness issues, I was devastated. My depression and anxiety picked up and I became agoraphobic, if only because I was worried about running into classmates or TAs or professors. My fibromyalgia went into a flare that only ended in the last year, and my Still’s had a blast with my stressed and scared body.

Sometimes I think that if I had really been more invested in the subjects that I would have stuck with it and excelled. Then I remember just how very sick I really was – and these pictures are from the year before I quit even!

It took a long time for me to deal with those feelings. It really wasn’t until recently that I was able to let go of those emotions – and really only now that I’ve been able to get proper medical care and get a lot of things under control.

I think I felt pressured to study the Middle East, Islam, and Arabic. Honestly, a lot of it was wanting to set myself apart from the others I did my undergrad in and choose a religion that wasn’t Christianity. I often think that perhaps I should’ve chosen Buddhism, but I knew that wouldn’t have the potential to be a real income maker like Islam. I was raised with the thought that I would be a diplomat in the UN to make my mother proud. That was pretty heavily pushed on me. With all the conflict over there, the Middle East seemed like a great area to start that career in – especially since I was so used to conflict and fighting every single day of my life.

In the course of my studies, I found out so many interesting and beautiful things about that part of the world. I shared frustrations with my TAs about how the university had us learn words related to terrorism before we learned colors – something that would never happen in languages like Spanish. I tried Arab coffee, sweet treats, held conversations in Arabic, and spend times discussing the similarities between Arabic and other languages.

Honestly, removing myself from that world hurt more than words can say. I’ve always excelled and been a great student, so to have to ‘fail’ something really hurt. I know now that it wasn’t truly failure, but it sure felt like it for a long time. I’ve always persevered, and suddenly I couldn’t anymore.
We’ve now reached the point where I would’ve graduated and probably had to move to a different state for a job. The nice side of that is, as much as Wisconsin sucks sometimes, Madison is beautiful. I do miss the west coast/northwest scene, but this is good for now.

I’ve been able to channel all of the energy I had put into school work into my activism, redefining what I wanted, and that’s helped me tremendously. It feels sometimes like so many of the things I’ve done have been more behind the scenes type of things, which can be frustrating when I want to have bigger roles. It makes it hard when people in those roles make hurtful comments. I have to step back and really analyze not only what is going on but if I’d want to be involved anymore when that’s what happens.

I wish things were different. I wish that I had really thought about what I wanted to do after college, aside from me and my roommate having a backup plan of living in a van or hanging out with basketball players.

I wish that my body hadn’t have crapped out on me. At the same time, I love where I’m at now between our place, my loved ones, my job, the docs I work with, etc. I feel like I’ve really found where I belong, and that wouldn’t have happened without the death of this dream.

Therapy Thursday: piggie therapy!

My guinea pigs are amazing little guys. They’re resourceful, adorable, and both good at hiding and exploring depending on the situation.

One of my favorite things about them, though, is how helpful they are when I feel crummy.

Okay, so maybe they don’t come scurrying along with their medical kits, but still.

Gus is piggie hell on wheels, but that’s why I love him. He’s silly and loves to explore. He tries to move our couch on his own, even though he’s tried it approximately two million times with no positive result. He loves to play and snuggle with me. Gus is warming up to T, but this little guy is my baby no doubt. He knows it too!

Jaq is my sweetheart. He was the shyest animal I’ve ever met when we got him. He still has his timid moments, but he loves to be held as long as he’s comfortable. He loves to give me kisses and cheer me up when I’m sad. Jaq will explore to a certain degree – when it means finding good spots to hide in a corner.

Oreo is so interesting. He’s a year older than the other boys, but never was held much by his previous owners due to allergies. Still, he’s very interactive. He knows his name very well, coos when you say hi to him using his name, and will follow you around the cage – even running to the side of the cage near the front door when you get home.

All three of these piggies have such different personalities, but I think that’s why I love each of them so much. Jaq and Oreo room together, with Gus nearby, because Gus is a fighter – but not a good one! He always gets his fur bitten and loses fights he picks.

If I want to be silly, I bring Gus out and we crawl around on the floor or on my bed. He squeaks while he explores and it is SO adorable. Sometimes we watch sports.

If I’m sad and I need loves, I pick up Jaq. Sometimes that means picking up his bungalow instead of just him, but he likes that. I’ll give him treats and snuggles, and he give me loves. Sometimes I think he had it hard with the other piggies. When we got them, Gus was very dominant and so Jaq didn’t stand up for himself. Now that’s changing and I can’t help but think he mirrors me a lot.

I’m still figuring Oreo out, and that’s okay. He and I are a work in progress, but that makes it good. Oreo is very vocal about when he’s done being out and chitters to let you know it. He doesn’t bite – not even test bites like the others sometimes do. He also doesn’t like all the food the boys do, so I’m working on getting him to try new things. Sunday he found out blueberries are pretty delicious!

Other than sports buddies, what do these three rascals bring me?

They are my best friends and they love me unconditionally. They miss me whether I’ve been gone for days or hours. They snuggle and kiss and play with me to cheer me up – and they can definitely tell when I need it. They’re honestly my babies, and I couldn’t be more grateful for everything they do for me.

Do you have a pet or pets that help you out? Tell us about them!

Terminology Tuesday: Hepatosplenomegaly

Hepatosplenomegaly is something that can happen in rheumatic diseases, especially in SJIA or adult onset Still’s which both are more likely to cause systemic/organ issues. However, it can also happen in types of cancers, infections, and other diseases.

I always find it helpful to break down the prefixes and suffixes in medical terms, so let’s do that here.

Hepat- or hepar- has to do with the liver, while splen- has to do with the spleen. The suffix -megaly indicates abnormal enlargement, so hepatosplenomegaly is the abnormal enlargement of the liver and spleen together.

There are not always obvious signs of hepatosplenomegaly. The above are some of the things to look for as a doctor, but what do we look for as patients?

People dealing with this malady can have the following:

  • Jaundice
  • Fever
  • Changes in bowel movements (looser)
  • Nausea and vomiting
  • Gas (belching)
  • Distended abdomen
  • Difficulty eating (loss of appetite, harder to digest food, etc)
  • Abdominal pain
You need to make sure to seek medical care with this. As I talked about earlier, it can be a sign of cancer. It could also be a sign of infection and/or organ failure.
Do you have an idea for a medical term you’d like to see defined? Shoot me a note or comment below!

Meditation Monday: Link Roundup on Self-Love, Self-Care, and Buddhism

With everything going on lately, I haven’t worked on new blog posts for a bit. However, I’ve been collecting some links to share with you – enjoy!

If you’re feeling off and out of control of your own destiny, it’s not a bad idea to check in with yourself, especially with your intuition. I really connected with the second point on this, which is to talk to yourself like a friend. That idea is really what has turned things around for me self-love and -care wise. You have GOT to practice self-care. It’s not optional – it’s something you have to make time for and do. One big reason? It helps us handle stress better.

Something else that’s helped me a lot is learning to say no. It’s hard to break the habit of wanting to please people. As someone who grew up in a home where you didn’t want to upset someone, I find it’s even harder than I ever thought it would be. It’s definitely something I’m working and making progress on though, which eliminates a large amount of self-loathing and doubt as well. Saying no takes a lot of courage. We should always remember that.

Recognizing abusive tendencies is hugely important, and is taking the time to learn about and find yourself once you’re out. Self-discovery happens at different times for everyone – I’m just glad I got to it before I hit 27! Healing from abuse is hard work, but it’s so incredibly rewarding. Also, as a reminder to myself, it’s never okay to deny the emotions you’re feeling. That doesn’t mean you have to act on them though. Something that’s important to do is to identify emotional triggers so that you can work on handling them.

Learning to let things go is a huge step we all must take. It’s not easy to do unless you learn to say no and love yourself though. It’s very easy to make excuses to stay in a difficult place or in contact with abusive people. There’s often peer pressure associated with these things, which doesn’t make it any easier.

I really enjoy reading things that other people would tell their younger selves. This one is focused on a person in their 20s, so pretty relevant for me right now.

The last point in this article hit me hard – be a rebel with a cause. You don’t have to follow what others are doing, and you can still make an impact by being unique. Don’t compare yourself to others either. Something that might help is to make a fuck it list (yep, you read that right).

A few weeks ago, I talked about loving kindness meditation and how it helps me. If you’re working on the same practice, here are some other intentions you can use in addition to ‘may you be well’ and the like. On that note, I’ve spoken a lot about Buddhism as of late. It’s something that comforts me and gives me tangible goals to work towards, not unlike the author of this piece. If you’re interested in learning more, you can always ease into it by learning about meditation terms or short five minute introductions. You can also investigate mindfulness on a very basic level and see what you think.

Even if you’re not into Buddhism, there are still ideas you can take from it to enrich your life. A few are included in this piece on mindfulness in relationships. It can even help us to think about our final breath. Keep in mind that meditation isn’t always easy to get into or a calming experience.

If you keep debating a choice, read this piece. Make an educated decision – but make sure to make your decision. Oftentimes it seems as though we get wish-washy and refuse to make a choice, even if it’s incredibly important. Sometimes the problem is that we start living on autopilot, isn’t it? Here’s a list of ways to stop that.

Spending time with my sister recently was so very much needed, especially with Sam still struggling. It also gave me some time to travel by myself, which is always an adventure. I’m starting to love things like driving in downtown San Francisco without my GPS on to see what I can see. I’m finding comfort even out of my element, and I love it.

If you’re having a really hard day, remember to be grateful, to let go, and to listen. You can always try some things to restart the day too, or remember that you can allow yourself to be imperfect. It all goes back to the beginning of this post – you have to learn to be your best friend so you can care for yourself better.

Side note: The Elephant Journal site limits you to three (3) free articles per day, so you may need to bookmark some to read in the coming days.