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.

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.

Terminology Tuesday: TAPVR

While this isn’t necessarily arthritis related, it’s obviously weighing heavily on my mind with my newborn nephew facing open heart surgery.

Total Anomalous Pumonary Venous Return (TAPVR) is a kind of Congenital Heart Defect (CHD) where the heart doesn’t connect to itself correctly. In fact, it’s listed as a Critical CHD, which means extra bad news.

It means he’s special medically just like me and his momma though – one out of 7200 babies every year is born with a CCHD in the US. That’s 1 in 4 of the 1 in 100 born with a CHD, or 1 in 400 children. TAPVR specific rates aren’t available, but would be much smaller due to how many CCHDs there are.

To understand it, we’re gonna need a quick rundown on how the heart works. Heads up for my boss for running through this with me last week (and to the CDC for having the best site). Can I just say again how much I love pediatric docs?

Blood that has run through the body loses oxygen. That’s why our veins are blue instead of red – the blood inside has lost oxygen. That blood has to come back to the heart to get oxygen again, and it does so through the superior and inferior vena cava.

The right atrium, where the blood enters the heart, acts like a mini reservoir in that blood collects there until it is pushed down through the tricuspid valve when the heart beats. It goes into the right ventricle and, when the heart beats, it gets pushed into the lungs via the pulmonary valve and main pulmonary artery.

The blood gets oxygen in the lungs and then comes back into the heart through the left atrium. Just like the right, the left atrium acts as a holding space until the heart beats and blood is pushed through the mitral valve into the left ventricle. The muscle here has to be very strong, because when the heart beats again, the blood has to go through the aortic valve and aorta to go out into the rest of the body.

If that doesn’t help, maybe this video will:


Got it? Kinda? Good!

In someone with TAPVR, the blood going out to the body carrying oxygen isn’t going out the right way.

As we can see in this picture, the blood with and without oxygen is all mixing together. Here’s what’s going on:

The unoxygenated blood comes back to the heart like normal and even goes out the the lungs like normal. However, the oxygen-rich blood coming back from the lungs has a problem.

Sam’s heart isn’t set up like a normal heart. TAPVR means that the pulmonary veins aren’t connected in the right spot. Instead of coming to the left atrium, the oxygenated blood goes back to the right atrium and starts the process again. The only reason Sam is getting any oxygen to his body is because there is also a small hole between both atriums, allowing both oxygen-rich and unoxygenated blood into the left atrium.

The blood going to his body isn’t oxygen rich and that causes problems.

There are a few types of TAPVR. Sam’s is infracardiac, meaning:

the pulmonary veins come together and form abnormal connections below the heart. A mixture of oxygen-poor blood and oxygen-rich blood returns to the right atrium from the veins of the liver and the inferior vena cava, which is the main blood vessel that brings oxygen-poor blood from the lower part of the body to the heart. (what up CDC)

The only way to correct this is to have open heart surgery. If you want to see what the surgery looks like, you can watch the graphic video here. It’s upsetting, so if you’re emotionally invested in this baby boy, stay away from the link or you’ll wind up in a puddle like me.

With it being a CCHD, he may need further care. Some kids need more surgeries. If things go really well, he’ll have to visit numerous specialists often for a long while.

This is not okay. No child should have to go through this.

Mental Health Monday: rant warning

Warning: rant time.

I’m writing this last Thursday, as Kelsey is getting ready to meet with Sam’s surgeons and I’m prepping for therapy.

I watched a video of the surgery Sammy will have on YouTube. Don’t do it. Ever.

I lost it at a point during the video while alone in my office. I can’t handle this. Not being there is killing me, and the longer I’m not there the worse it gets.

Kelsey needs me today. She needs me and I’m not there. I can hold things together mentally for a while, mostly when I talk to her, because I know she needs me to be the brain right now, to help think about and deal with things she might not have thought of yet – like the GoFundMe or facebook pages I set up before she was even awake the other day.

I’ve had a glass of wine every night for the last few nights. It’s the only way I’m getting any sleep, unless I want to use a muscle relaxer and then I can’t focus the next day if I have to wake up on a schedule.

When Kelsey had her seizure in 2009, I got this scared. There could’ve been a million things that caused that seizure and for a while we didn’t know if it was really bad. Thankfully, it seems like it was a random occurrence, but still. I held it together for Kelsey and lost it out of her sight (ie the bathroom because I didn’t want to leave her side).

I even tried to get her medical care for some serious issues she was going through and couldn’t because I wasn’t the parent… So unless I could house and raise my sister – and sued my mother for custody – I couldn’t get sis the right medical care. It’s bullshit.

I’ve always felt more like a parent than a sister, and I guess that’s what parents are supposed to do right? Be strong for those we love and then silently break down in the bathroom or the shower when no one’s watching?

Hell, I do that with Theron too. Maybe it’s just a me thing.

I’m upset that my mother is trying to make the situation about herself instead of about helping, about providing love and advice and a shoulder for Kelsey to lean on. I guess that’s what she’s always done though, so I really shouldn’t be surprised. It hurts that even in the hardest of times, she finds a way to do this.

Parents are supposed to help and do what’s best. That isn’t this. And I, as an older sibling, feel bad for not being the best parent right now.

Emotional incest for the win!

Side note to explore another day – I hate that I’m practically my mom’s ex. Again, emotional incest sucks.

UGH.

I’m ready for therapy, for my glass of wine, and for sleep. It’s not even 1 pm yet.

Self-Care Sunday: dealing with the past

Real talk: you do seriously need to watch this. If you haven’t yet:

Kimmy: I can’t even do a dream date right!
Titus: Probably because you’re bottling up the past. The past is not a root beer Kimmy Schmidt!

Today, we’re going to talk about what to do for yourself when you’re dealing with rough things from the past.

Do you feel like your should-be self is interfering with your right-now life? And who you want to be? Check out this piece. And if you feel like you were over some past things but recently discovered you weren’t, please please please read this post from Blessing Manifesting. Spot on.

It’s important in so many ways to both own and tell your story. Maybe you’re on the path to finding out your story and learning why it’s so important to share. Remember that there are always ways to get through the hard times.

Kimmy: Do you think going through something like that – a war or whatever – makes you a better person? Or, deep down, does it just make you bitter and angry?

Have you been abused by family or others too? There are lots of guides out there on how to heal, but I found this one helpful. One really tough part about all of this is figuring out that you contain worth and you matter. You’re not just taking up space. People like me often find comfort in becoming a bit of a control freak. In reality, we need to let go and work on how to deal with less emotional pain. Sometimes that means working through the abuse. Sometimes that means ignoring it. For others, that means focusing on the good that’s come out of the situation.

The important thing to remember is that standing up for yourself gives you the power in the relationship and negates much of the power they hold over you. Learn to say no and set up real and proper boundaries. It isn’t easy and you will have set backs, but believing in yourself and your experiences will help get you to where you need to be.

If you’re dealing with PTSD or other issues that cause flashbacks, learn about how and why they happen.

If you can’t remove yourself from a situation by cutting contact like I did, try these steps when you’re in a high pressure situation. It’s easier said than done to keep your cool, but it can help to step back from the emotions of the situation.

Make sure that you address all the dimensions of self care that there are. Help the others around you by talking about empathy and asking for help when you need it. If you need it, check out resources on DBT and other ways to get through crisis moments. Processing traumatic events is really hard. Maybe practice some self care? If you’re really stuck on that though, try helping someone else. It always makes me feel better.

It won’t be easy but you can make it – because you’re:

Therapeutic Thursday: the importance of sharing your truth

It can be really hard to stick to your guns when others act like you’re in the wrong on something. It’s even harder when that something has to do with your personal well being.

If you’re anything like me, you see standing up for yourself in some aspects as not worth the confrontation or conflict that may come along. You’ve been conditioned, whether through people or other influences in your life, to see yourself as unworthy, little, and puny. Sure, everyone has days like that. For some of us, that’s what makes up the bulk of our thoughts.

The biggest problem with growing up in a home or being in any position where you’re conditioned to think like this is that it affects every aspect of your life. It will make you think your bronchitis is just a cold – that you’re upplaying the affects of any illness or just unworthy of getting treatment – and that you don’t need to seek medical help. You don’t go for promotions or better jobs because you ‘just know’ you won’t get them. It affects your confidence to the point that if, by some miracle you did apply for a job, you wouldn’t get past the interview stage because you become a nervous and anxious wreck. Your personal relationships suck because you either have no friends or you have ‘friends’ who walk all over you and make you feel worse about yourself.

It’s almost as if every user can sense you’re a good usee.

On top of that, you get to deal with that little voice in the back of your head that reminds you how not good enough to accomplish things you are. Oftentimes, that voice is the voice of the bully or abuser or oppressor that you’ve dealt with.

A good way to combat these feelings is to be assertive and to speak your truth.

I know that speaking your truth sounds silly, but that’s exactly what it is – your truth. Just because your abuser didn’t see what she did as abuse doesn’t mean it isn’t. If you felt abused, that is your truth. No one has the right to tell a victim whether or not they were victimized.

These issues will just keep popping up until you get help and work on sharing what you’ve gone through. Not everyone is as into sharing as I am, but I believe that it really does help the healing process along for others to hear and know about why you’re triggered by the smell of beer or why people yelling at others bothers you.

Sharing can be a really hard step for a few reasons – the biggest perhaps is that sharing makes what you’ve gone through real. I began to talk with other abuse survivors and the things and stories we had in common were frightening honestly. It became more real to me.

Right now I am dealing with the realest feelings from the abuses I’ve suffered. I’m dealing with flashbacks that I have a really hard time getting out of. I’m dealing with pent up anger at remembering more and more things that happened as I was growing up. All this is happening because I’m sharing more in my relationships and in therapy. But it also means I’m working through these issues.

I am solid in the knowledge that I suffered through things a child shouldn’t even have to think about let alone endure or witness. I know for a fact that the adults in the home where I grew up have some serious personality and mental health issues that need to be addressed but likely never will. I am dealing with the fact that my family was not dysfunctional but abusive and that it stunted my emotional growth horribly.

I own everything that I am, including what has happened to me. In order to embrace myself – faults and all – I must embrace the scared little girl that still resides inside of me. I have to help her find her voice.

My mother can’t seem to keep herself out of my life. She continues to read what I’m doing here on this blog and trying to creep on me via multiple social media sites. My sister has been asked to rein me in to stop me from talking about what I’ve gone through.

I’m not a little girl anymore. I can’t be scared by comments that my sister will be taken away and my mother put in jail if I talk about the abuse or what happened in our home. I won’t be frightened into silence anymore.

And if you don’t like what I have to say, I have only one thing to say to you:

Your opinion doesn’t matter anyway.