Monday, April 27, 2015

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.

Also, wine
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/north west 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.



Sunday, April 26, 2015

Self-Care Sunday: Birthday edition!


Whoo party time!

By party I of course mean nap in the sunshine, play with the piggies, play some catch or shoot some hoops, and snuggle with my hubby... unlike my namesake, who considers barn raising, quilting, and square dancing a great time.


I also really, really hope there are no tornadoes for me in the near future.


Anyway...

It feels weird this year. When I was younger, there was always this excitement about my birthday. Over the last few years, that has gotten muted, but this year it's almost gone. I didn't even really remember until earlier this week that my birthday was so close!

I suppose with everything that's gone on lately, I haven't really felt self-focused or very celebratory. My therapist even kinda chastised me, telling me to work more on self care in the coming days and weeks.

I know it's important, but other things were more important for a while.


Like these cuties! Yes, Sam got to finally go home in the middle of this past week. He's doing well eating from a bottle and being a cutie. And that big sister of his is stoked he's home, but also not sure what to do with him now.

I miss them bugs.

As a part of working on focusing on myself in the next little while, here are some articles I've found helpful in the last week to get me back on track - if only they could help my body get away from Pacific time and back to Central!

I've been a little bit on the naughty side, ignoring meditation since I got back. I have to remember the very real and concrete reasons to do it, including my mental health. Maybe reading these tips will help me get in the right mindset. It helps keep me more sane, so I know it's important!

Another thing I tend to have a problem with is feeling like I'm on the right track with my decisions and actions. I need to remember to check in with myself using these questions. Having gratitude for what I do have and what I've accomplished helps.

When all else fails, I should just dance.


Sometimes I feel really different. I'm awkward in social situations and don't always know how to get out what I want to say or express. There are a lot of things that help me with that, but especially the Unbreakable Kimmy Schmidt and Doctor Who.


It's okay to be the free-spirited woman I am. It helps me fight for myself and for others better. Being sensitive has drawbacks, it's true. I wish my sensitive heart and soul came with an owner's manual! I know that, especially with my soul, I need to practice more self-care... especially, again meditation. But I also know that if I embrace it more, as I tend to do on here, it will take me to the next level.



Thursday, April 23, 2015

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!

Tuesday, April 21, 2015

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!

Monday, April 20, 2015

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.

Friday, April 17, 2015

Update on Sammy

I'm home. I understand what jet lag is like. I so tired but can't sleep. I'm barely eating.My asthma is worse. My body doesn't like Wisconsin.

It's all worth it.


Sam's surgery last week went really well. They finished in half the time they allotted. He's recovering really well. They've got him weaned off of morphine. His incision wound is looking good. They moved him from an isolette to a real crib. All his IVs are out. He's starting to be able to wear clothes again.

The biggest issue is that he is having a hard time latching to eat, so he still has a NG tube. That'll be something for them to continue to work on before he can go home.

He's doing even better than anyone expected. Like one of my friends said, he was certainly born into the right family to be a fighter!

If you want to follow his journey, check out the facebook page here. You can also donate to help cover the costs of transportation (gas & tolls) back and forth to the hospital, hotel rooms nearby, or food for my sister and her family here. She lost her job at the end of last year due to an accident she had at work and she was the only one working, so every little bit helps.

I also got to spend time with my niece, which was so super needed.


She seriously looks like a mix between Kelsey at that age and myself, right down to my silly faces.

I did a little bit of exploring on my own, taking a selfie T says I look super skinny in.


I also took sis out to try to make her have fun one day. I think it might have worked.






I may not post as much again for the next week while I work on sleeping and resting a bit. I also have a tattoo I'm working on, with the consultation being tonight at the place I got my last one. I'm pretty excited!

Wednesday, April 8, 2015

AFGO: another fucking growth opportunity

At my therapy appointment last week, we talked about the frustrations I have with people interjecting themselves into this situation with Sammy... Being supportive is one thing, but throwing a fit because you're not in the thick of it is inappropriate.


It was a really well timed visit honestly.

One of the hardest things about my nephew being ill is not knowing what is going to happen or be able to plan things. Obviously when any crisis like this affects my sister, I want to be there right away. I'm glad I waited and tried to plan better, because if I had gone right away I would likely have had to miss the surgery itself. That's too important.

The uncertainty is hard. The out of control feeling is hard. The patience is hard.

My therapist told me to treat it like an AFGO - another fucking growth opportunity.


I certainly appreciate the idea, especially the bit about the cursing... and how it sounds like you're fed up with the situation already.

Definitely, especially with you-know-who.

That's how I'm going to approach this right all now - as multiple opportunities. It's an AFGO. It's an opportunity to see my sister, meet my nephew, and hang out with the fam. It's an opportunity to see San Francisco and travel more.

Mostly, it's an opportunity to be in a type of care coordination role. I need to make sure that this family is taking care of themselves and do what I can to help them with Sam and Marissa.