Category: health activist writer’s month challenge

5 Dinner Guests

Posted on by Grayson

I always thought that when asked to pick 5 people, alive or dead, to join me for dinner that I would pick amazing or noble people – Cleopatra, Gandhi, The Dalai Lama, you know people of that nature. Now that my life is a little bit different from where I thought I would be at almost-24, I think my answers have really changed.

 

  • Lucille BallLucille Ball has always been one of my favorite people. As a child (and still today), laughter always helped me get through my pain. I Love Lucy reruns were a really big part of my childhood. It wasn’t until the last few years that I learned that she developed RA as a teenager. Her original dream was to become an amazing dancer. When RA hit, she had to learn how to walk all over again. Through her different shows, she incorporated dancing and was able to be very physical despite the progression of the disease. I admire her tenacity and her bravery. I would love to learn more about her resilience and how she was able to fight through the pain. Here are my three favorite quotes from the famous redhead:

 

“One of the things I learned the hard way was that it doesn’ t pay to get discouraged. Keeping busy and making optimism a way of life can restore your faith in yourself.”

“Love yourself first and everything else falls into line. You really have to love yourself to get anything done in this world.”

“I’m not funny. What I am is brave”

  • RenoirI’m not much of an art person. The great artists I care about are Italian, and that’s why I love them… which is not entirely true because I love Middle Eastern art but not enough to tell you names. Renior, though, fought RA for a very long time. Towards the end of his life, he was bedridden and his hands were so deformed he couldn’t do what he loved most – paint. Eventually, he decided to bind his brushes to his hands and he learned to paint differently. I admire his fighting spirit most.
  • The Dalai LamaMy undergraduate degree is in religious studies, but I started out in chemistry. People who don’t know that much about me assume that I did it because of faith, seeing as how I’m also an ordained minister. They really don’t know me well though. My sophomore year, I took a survey class on Asian Religions. I mostly did it because I do yoga to help with my illness, and I have since I was about 12 or so. I wanted to learn more about Buddhism and about the roots of yoga. By the end of that class, not only had I changed my major but also my outlook on life. I would not say that I am a definite Buddhist or anything, but if I had to choose a religion that follows mostly what I believe, then Buddhism would be it.

    And the Dalai Lama has an amazing sense of humor. Seriously, the man watches Monty Python and laughs constantly.

    Here is one of my favorite DL quotes. I like it because there is so much truth to it, and you don’t need to be a believer or accept someone into your life for it to be true:

“If we were aware that we all contain love within us, and that we could foster and develop it, we would certainly give it far more attention than we do.”

  • Jon Stewart and Stephen ColbertThese men are two of the funniest and smartest in the world in my eyes. The boyfriend points out that they have writers, which is true. But even during the writer’s strike a few years ago, I love their shows. Hell, I think I might have loved the shows even more during that period because you got to see some jokes that flopped and some segments that didn’t work well. Even in failures, these guys are hilarious. Interviews on their shows aren’t like those on those other nightly interview shows on other networks. These two actually ask questions that are pertinent to the world, about things that actually matter. I think that Jon more so is known for this, but Stephen does it well during his parodies.

    And, I suppose, to be truthful I should share that I think they’re both super hot and I would probably lick, I dunno, caramel sauce off their faces or something… because that’s not creepy at all. But see, I think they’re hot not only because they’re both dashingly handsome but because of the things that they stand up for, because of the awareness they raise on issues, and because of their use of humor in doing it.

    And I might be kind of in love with Stephen, partially because this quote by him gives me strength:

    “Don’t be bitter. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life.”

I think it would kind of amazing to have all of these people in one room together. Four of them I know have amazing senses of humor, and they have all seen so much in their lives. I can’t even imagine what I would do seeing any of them in-person let alone having them to dinner. But I think it would be a wonderful time, and I think I could really learn a lot about all five of these wonderful people.

Open a Book

Posted on by Grayson

Choose a book, open to random page, point to a phrase & use it to start writing.

I took his hand and held it lightly. He was careful not to put too much pressure on my swollen joints. “I still don’t know how I’m going to face them, Kyle.”
-Page 180, Did You Hear About Amber? by Cherie Bennett

It is really hard to be sick, really hard. To be honest, some days I look back at and I don’t know how I made it through them – not just physically but emotionally too.

I was really surprised to find this book. It’s in a series called Surviving Sixteen – and it’s about a wonderful dancer who falls ill with JRA. Her friends desert her and her boyfriend leaves her. She fights so hard against the restraints her body puts on her, and it’s not until her dance team – the one she started – replaces her that things get worse. Dancing is her life.

It gets so bad that she attempts suicide, only to be rescued by the boy who becomes her new boyfriend.

To be completely honest, there have been a few times in the last few years where things were very dark for me. Having just broken through one of those periods in time, I can say that if I didn’t have the support of an awesome boyfriend I don’t think I would have made it. I don’t think that anyone knows how close I was to the edge, and I really don’t want them to. I’m just thankful I’m in a better place right now.

I think listening to Nicki Minaj probably doesn’t hurt 😉

Learned the Hard Way

Posted on by Grayson

At the beginning of my adult health journey, I honestly didn’t know that much about my illness. I had started to, as a result of this blog. But I wasn’t to the point that I could honestly say I understood the medications and how they were supposed to help me. I was content to let my doctors tell me what to do – after all, they have to know my body better than me with all their education and experience.

Which is absolutely the worst possible thing you could do.

Whenever I speak with someone who has been recently diagnosed with any form of autoimmune arthritis, my first suggestion is that they educate themselves as much as possible on their particular disease and the available treatments.

It’s not just because it’s a smart idea though.

My first rheumatologist was based in Milwaukee, not too far from where I was living when I started seeing her. Initially, she wanted to put me on Plaquenil. I made the right decision, and went home to research the medication. It wasn’t until I moved to Madison, about an hour and a half away, that I decided I would try the medication. I also got a referral to a rheumatologist in town so that I wouldn’t have to take time off school and work to do labs and go to appointments.

This next rheumatologist was less… understanding. Even the nursing staff and receptionist there were grumpy all the time. But most importantly, he wanted to be in control. He didn’t explain side effects to me and blew off my concerns. My personality is one where I don’t necessarily like to make waves, but even when I was calling in horrible pain I got no real answers.

When I was on MTX and was experiencing side effects, he lowered the dose and had me break the pills up during the course of the day. He didn’t recommend switching to the shots, which most doctors would have done based on the symptoms I was having. He would not give me anything but ibuprofen for pain. He wouldn’t tell me the plans for labs or anything. It got to the point where I was satisfied taking the medications and just not seeing him.

My wish came true close to a year after seeing him initially when my appointment was cancelled – an appointment that, because of my job and school life I had to take a whole day off work to make. There was really no care for the fact that my schedule was being messed with.

For me, that was the straw that broke the camel’s back. I couldn’t call the office and get an answer for anything within a week. I was constantly being passed around and being told incorrect things. On top of that, in getting my medical records I found out that he actually didn’t listen to a word I said. There were so many mistakes I can’t even go over them.

I learned the hard way that I needed to take control of my health and treatment. My new rheumatologist and I make decisions together now, including my upcoming switch from Humira to Enbrel. I wish that I had been able to put my foot down more.

A Review: After the Diagnosis

Posted on by Grayson

Sooo today’s HAWMC post is supposed to be about Pinterest. I don’t do Pinterest. No offense to those that like it, but it seems slightly silly to me. If I like pictures, I download them or share them on facebook :-p

So instead, I will talk about a book I read recently and enjoyed very much!

After the Diagnosis: Transcending Chronic Illness is written by Doctor Julian Seifter and his wife Betsy. I’m not going to lie – I picked up the book because it has a butterfly on the cover and it was about overcoming illness. But I am very glad that I judged this book by its cover.

Dr. Seifter is a doctor specializing in liver disorders. He sees people facing many chronic and terminal illnesses. He, too, deals with his own illness – diabetes. Throughout the book, he weaves stories about his patients and handling their illnesses along with his realizations and battles with his own health.

The whole book is amazing and a very easy read. I would definitely recommend picking it up. But I’ve earmarked some of my favorite spots of the book and would love to share some bits with you that I found particularly interesting.

One of the biggest themes in the book is that the patient needs to be just sick enough. This doesn’t really apply to them physically, but mentally. If they aren’t sick enough, they might not pay attention to their health and get the treatment and help that they need. If they’re too sick, they’re probably hypochondriacs, very afraid and unable to handle their illness, or unable to see the good side to life. I think at times all patients move between these categories, but it is important to be just sick enough – to be sick enough that you know you need treatment and to be your own advocate, but to not be so sick as to alienate everything your life has been about. You have to live your life while you can. I think the following excerpt from the book hits the nail on the head, especially if you read the book and know the story around this passage:

The chief message of all this: you’re alive until you die. Every minute counts, and relinquishing hope, playfulness, distraction, pleasure consigns you to a premature death, even when death is knocking at the door. The truth is, we’re all on the same train headed for the same destination. When the diagnosis comes, forgetting it – intermittently at least – is not only understandable but sometimes quite adaptive. (150)

One of the other important points that Seifter hits is that society often blames the victim, or in our case the patient. Clearly, because we have an illness that not everyone has we must have done something to cause it – or, maybe, it’s something that we didn’t do. We aren’t juicing enough, taking enough vitamins, smoking enough crack, sacrificing enough animals… Okay, those are ridiculous examples, but so are the real world ones – if only you would take these vitamins… if only you would lose half your weight… if only you would be someone completely different from yourself… His point with all this is that we often turn that blame inward, causing ourselves undue stress – especially in chronic illnesses where not a lot in reality is known. Still’s is a form of JRA. There are a million theories as to how it starts, and anyone of them could be correct. Without a starting point, tries to cure the disease are stabs in the dark. It can be very frustrating.

There are several other really good points that he makes in this book, but I don’t want to share them all. The last one I’ll leave you with though is about couples facing an illness together – something that during the last half of March was a focus for me.

He tells the story of Mr. and Mrs. Valleros, the former of which suffers from amyloidosis. Seifter uses their story to discuss the wonderful art of being a couple and tackling illness together. He says that the “chief stumbling block to an authentic relationship is the problem of dependency” (203). It’s a delicate balance, he points out. If the mix isn’t right, the ‘well’ person can become too dominant and overbearing, or the sick person can become too dependent. This couple manages the balance swimmingly, even though Mr. Valleros is essentially dying.

One of the things that I really took to heart was Dr. Seifter’s words on illness in a relationship:

A marriage [or relationship] requires room for two, and illness tends to constrict the space. How can a couple thrive when it’s so easy to let illness close things down in ways that stunt growth and liveliness? How can the necessary collisions between two different people be fruitful rather than bruising? One way is to put the illness in its place. (205)

Another couple in this section fights the illness butting into their lives by intermittently paying attention to it and not letting the illness completely run things. The ‘well’ person in this particular relationship points out that they take care of each other. If one of them isn’t feeling well, the other is there to take care of. He also says that he doesn’t think of his wife as being sick.

And maybe that’s the key to all of this. A few weeks ago, I interviewed my boyfriend. While my illness can limit what we do – though I try my damnedest! – he doesn’t look at me and see something sick. He looks at me and sees a pretty girl who is really quirky but fun to be with and is very loving. Those are my words, but in the last few weeks he’s said as much – sometimes even verbally you guys. WHOA.

I think that his attitude, of my illness being just a fact about who I am and NOT being who I am makes all the difference.

So, getting back to the book…

You guys should read it. I teared up in spots, and was amazed by others. I found new ways of looking at my illness, and am trying to be ‘just sick enough’ instead of everything in my life being about my illness like it has been for the past few months. If this book has helped me to realize some things about myself – stubborn ol’ Taurus that I am – I can’t imagine what it might be able to do for you. At the very least, the writing is enjoyable to read and flows very well. I found myself not wanting to put it down. I don’t have those feeling often.

Writing Style

Posted on by Grayson

I don’t know, I guess I don’t really have what I would consider a writing style. I write like I think, which means sometimes things don’t make sense. I usually go back and edit them for clarity, which helps.

Sometimes I think that I should have been an English teacher or something. I cannot stand bad grammar, and am always embarrassed at typos and mistakes on my blog.

I think that my writing reflects my scatterbrainedness (see above), my fondness for creating new words, and my desire to show what my life is really like. I use a lot of humor to break up drama or sadness, because I can’t handle emotions very well – I never have been able to. And I use quirks in my personality as strong points in what I write.

This is one of the posts that I had a hard time to really write, since I don’t have a style. I just want to be an accessible person who can help others on the paths of their illnesses and help raise awareness as well. However I have to write to accomplish that, I will do so.

Pretty sure that last sentence is horribly incorrect grammatically but whatevvvvvs.

My Dream Day

Posted on by Grayson

Gosh, that’s a tough one. What would a dream day be like?

Right after I graduated college in 2010 – like literally, the next day – the boyfriend and I went for a magical vacation to Oregon, where I grew up. We spend a week in Eugene with family (including my adorable 5 little cousins who I just love the snot out of) before another week galavanting around the state. We spent the bulk of that time on the coast, which is just beautiful.

I think my favorite day during the whole vacation was one of those coast days. We went to the beach I grew up going to, Devil’s Elbow State Park and Heceta Head Lighthouse. I hadn’t been there in more years than I could count. I was so excited to see it again, and see how things had changed.

We hiked up to the lighthouse and got to wander around. Sometime during our travels, we did tour a lighthouse and I think it was this one, but I can’t remember for sure. The caretakers home also operates as a bed and breakfast, and it was really cool to explore that area as well. Coming down from the lighthouse, we wandered off the main path to another one. We found ourselves hiking and climbing down from the lighthouse along the rocky cliffs of the coast. I didn’t think that in a million years it would be something I was able to do. But I did it – barefoot I might add – and we reached the shore.

I should have been in so much pain. I should have been exhausted and unable to move. But I wasn’t. In fact, the only painful things about that were that being barefoot on rocky cliffs is kind of scratchy on the feet and there was a cave we had to cross before reaching the beach, where the tide came in and came in high. Ocean water is pretty cold.

I think that for me, going through a day like that again would be amazing. It really was a perfect day

EDIT: Ohhh! I found a picture from after our journey down the rocks!

 

Theme Song

Posted on by Grayson
If my blog had a theme song, what would it be?

I think the point of this post is to write lyrics and think of what kind of music would lay the background for the song. I’ve actually written a lot of songs in the past, mostly in high school. They were either way entirely too over the heels in love or very angsty. A teenage girl being angsty, go figure. To be completely honest though, there is one song right now that kind of serves as a theme song.

One little known thing about me is that in addition to loving to sing and play my ukulele, I love to rap. I love listening to the beats and trying to conquer tough songs. One of my absolute favorite artists right now is Nicki Minaj. Some people don’t like her because she’s over the top. I say that her being over the top is because she, like so many of us, can’t be defined by societal standards. Think of a Lady Gaga/Lil Wayne baby and you have Nicki.

Except that she’s more than that. To me, she’s a huge inspiration. She runs her own business, and she sees the sexism in the business world and the double standards. But she tries to not let those things get to her.

Her recently released CD has a number of songs I love on it, like Starships. I think that it really captures a lot of how I can act. But Pink Friday, the CD released at the end of 2010, also has some amazing songs. My favorite, hands down, is entitled “Fly.”

If you want to hear me sing, play ukulele, and rap (hahahaha oh my), click here to listen to my acoustic rendition of the song. For everyone else, Nicki’s version is here and I’ll post the lyrics below.

I came to win, to fight, to conquer, to thrive I came to win, to survive, to prosper, to rise To fly To fly

Uhh, yo, yo

I wish today it would rain all day Maybe that’ll kinda make the pain go away Trying to forgive you for abandoning me Praying but I think I’m still an angel away

Angel away, yeah strange in a way Maybe that is why I chase strangers away They got their guns out aiming at me But I become Neo when they aiming at me

Me, me, me against them Me against enemies, me against friends Somehow they both seem to become one A sea full of sharks and they all smell blood

They start coming and I start rising Must be surprising, I’m just surmising I win, thrive, soar, higher, higher, higher More fire

I came to win, to fight, to conquer, to thrive I came to win, to survive, to prosper, to rise To fly To fly

Uhh, yo, yo Everybody wanna try to box me in Suffocatin’ every time it locks me in Paint they own pictures than they crop me in But I will remain where the top begins

Cause I am not a word, I am not a line I am not a girl that can ever be defined I am not fly, I am levitation I represent an entire generation

I hear the criticism loud and clear That is how I know that the time is near So we become alive in a time of fear And I ain’t got no muthafuckin’ time to spare

Cry my eyes out for days upon days Such a heavy burden placed upon me But when you go hard your nay’s become yay’s Yankee Stadium with Jay’s and Kanye’s

I came to win, to fight, to conquer, to thrive I came to win, to survive, to prosper, to rise To fly To fly

Get ready for it Get ready for it Get ready for it I came to win

Get ready for it Get ready for it Get ready for it I came to win

I came to win, to fight, to conquer, to thrive I came to win, to survive, to prosper, to rise To fly To fly

Dear 16-year-old me

Posted on by Grayson

Dear Kirsten,

High school, right? I know!

You have some amazing friends. In the next few years, you and some of them will move across country. You’ll periodically lose touch and then regain it via social media. But, why lose touch with them at all? Don’t do it!

I know that you’re struggling with your self-esteem right now. Dating John isn’t helping things. All he does is give you candy and soda and stupid fatty things. He seems okay right now, but he’s not. He’s not mentally stable, and it’s going to cause you a lot of pain. I know that you think you love him. But obsession on both your parts isn’t love and it isn’t healthy. If you were smart, you’d cut it off right now and try to make it up to your friends that you’ve lost time with them.

Some day, you’ll meet an awesome amazing boy and he’ll actually be worth your time. Until then, maybe you should just hold off on anything serious.

Also, you’re not fat. You’re chubby. Chubby is cute. Embrace it. And wear clothes that fit you.

The most important thing you need to learn right now is to listen to your body. When it wants you to stop, please listen and don’t push it. Pushing is how you end up with bum knees and super expensive physical therapy. You feel awesome a lot more than not right now, and that’s great. Enjoy it, but carefully.

In a few years, your health is going to start getting pretty bad. You just need to know that you can fight it. There will be some pretty scary moments, but you won’t see the inside of the ER… mostly because you’re stubborn. But you probably shouldn’t be so with your health sometimes.

And stay away from methotrexate. It’s horrible.

Sincerely,
Future Kirsten

PS: During your senior year, spend a little more time on your capstone paper! You get a passing grade on it, but I know that you could’ve done better. Work harder. This applies to both your IB paper and your college paper.

PPS: Wisconsin isn’t as horrible as you think. You’ll make your best friend ever there, and that pretty nice boy I reference earlier. Give it try. You can go back to Oregon by 2015.

Best Conversation I Had This Week

Posted on by Grayson

To be completely honest, the best conversation I’ve had within the last week was last Saturday when I interviewed my boyfriend about what it is like dating a sick chick. It was eye opening for me.

I give myself too much grief over not being able to do that I don’t see all that I push through. I tend to internalize things a lot, so this makes sense. But it doesn’t get me anywhere. I think listening to him talk about his admiration for me really changed my perspective on that, hopefully for good.

You know, it also taught me that his mom is a wonderful lady. She raised him with some awesome ideals, which I knew, but sometimes when you’ve been with someone for a long time you forget. I’m definitely glad to be reminded.