Monday, April 30, 2012

Help Me, I'm Melting!

It is fucking humid as all get out today. Seriously. This is so fucking lame.

I'm really sorry for the language, but seriously? Seriously you guys. The weather is supposed to be like this ALL FUCKING WEEK. Shoot me now.

The inside of my bones and joints are on fire... No, that's not accurate. It doesn't capture the ferocity of the pain.

The insides of my joints are turning to molten hot fucking lava. LAVA. I have lava inside of me. It moves so quickly, it's like I can't do jack to calm it. Adding heat makes it worse, but adding cold does too - because then some of the lava feels like it's hardening and that's super uncomfortable.

Because of this, my joints feel so shaky and weak. My wrists and hands are really going at it today. I should totally go to work for the money and the hours, but I really am thinking it's a no-go.

I don't want to downplay the pains associated with 'traditional' arthritis, osteoarthritis - because I know that it is very painful. But this is not anything compared to the kinds of pain that your grandma dealt with. I'm sorry, it just can't be. The lava feeling is right on, but I just... I can't explain to you how super painful this is right now.

On top of lava, everything aches. Muscles feel like I built a house over the weekend all by myself. I get chills and sweats. This fucking rash on my knees just won't leave. I almost threw up my meds this morning, because my body was all "oh no you don't, you best eat some food." Then when I ate food, it was still so fucking mad.

This is how it's always felt for me when I start going downhill. Sometimes I think about how this is how I've felt for 18 years. I imagine another little kid going through this and I lose it. No one should go through it. I never thought about how painful this was for me for my whole life. I never think about that I was 5 and going through this. But I was. I was so little.

I'm not trying to complain, but I want to show how this really feels. So many people don't know and could never understand. I'm so grateful for them, but for the rest of us we need some better vocabulary or something.

Fuck this shiiiiittttttt.

Word Cloud

Courtesy of http://www.wordle.net/


Wordle: Not Standing Still's Disease

Sunday, April 29, 2012

Six Sentence Story

My challenge today is to write a story in ONLY SIX SENTENCES.

Oh my gosh.

I wake up before my alarm this morning, an odd occurrence to say the least. Everyone is tired when they wake up, but today I feel like I've been hit by a truck. As I wake up more and more, the pain gets worse and worse. My hobble to the bathroom tells me that there's no way I'm going to work because my feet are filled with glass and someone seems to have stuck invisible arrowheads into my joints. I try yoga and a shower, both of which help temporarily but make little headway in reality. Twelve hours later, even sitting hurts and I wonder how I will sleep tonight.

My thoughts are so deep you guys - so deep.

Saturday, April 28, 2012

Love Songs to Arthur, Part Deux

I've already talked about my lovely feelings towards my disease and my horrible lover, Arthur.

I've ventured into a really artsy time in my life right now, and a large part of that is to get out anger I have - anger at Arthur, anger at failed medications and side effects, anger at people for not understanding or caring or for thinking I'm just a fat pig, etc, etc, etc. When I feel artsy, I don't paint and I don't work with clay. I dive into music.

I've always had a huge fear of performing in front of people - that fear of messing up and having all eyes on me (when I'm not sexy right then) judging what I do. But I figure that you guys have read about my sex life now, so we really are like best friends right?

A bit ago, I shared a link to my cover of "Fly" by Nicki Minaj and Rihanna - what I consider to be my theme song. I have since covered Lady Gaga (pre-Monster), Tim Minchin (please, look up his stuff now and thank me later), Gotye, and of course Her Diamonds by Rob Thomas.

So come check out my tumblr where I will be posting/sharing uplifting things about self-esteem and my musical skills in an effort to a) get over my public interaction/speaking/performing fears, b) get better at playing ukulele, and, c) share awesome songs that I absolutely love.

Friday, April 27, 2012

5 Challenges and 5 Small Victories

The five most challenging things about writing about my illness... Hmm...

I'd have to say actually living through the stuff I talk about it pretty terrible. Some days, it's not so bad. But then there are others I just look back on and I have no clue how I actually made it through that day (week/month/whatever).

It can be really hard to put how I feel into words too - physically and emotionally. The pains of dealing with conditions in the autoimmune arthritis family are just... I can't even accurately describe it. And that's the problem. I can say "whoa, did y'all see that Mac truck?" but very few people living know what that feels like, and to be honest I'm not one of them. I, thankfully, have never been run over by a semi. I guess though a good thing about me dealing with Still's for so long is that I've had a long time with an interesting imagination to come up with ways to describe things. Apparently, from what I hear from you guys, they're pretty accurate sometimes so that's cool.

I hate not being able to walk around. Part of it is the actual deal of hating hobbling around like a fat mama penguin full of fish coming to relieve the daddy penguins after the harsh Antarctic winter. Part of it is feeling like the damn tin woman. I have a heart, I really don't need to follow the yellow brick road to get one (why are the bricks yellow anyway??). But part of it too is how people look at and treat me when that happens. I look 'normal' for the most part, so if I use a scooter in the store I'm a jerk. If I lean on a cart, I'm a weirdo. If I use a cane, I'm automatically a cripple - and probably because of my weight right?

But you know, I've dealt with this affecting my legs for eighteen and a half years now. Shit, it's been that long? Ugh. Anyway, like I was saying, I'm used to that-ish? I'm not used to it affecting my back and my hands and making it nearly impossible for me to do things that I would normally do, regardless of how my legs feel. Typing isn't going to work today? Okay, so then not only can I not work but I can't blog and can't be all social media-y like normal. Let's not even talk about going to the bathroom when nothing on your body wants to move and grip. LAME.

And then there's the emotional side effects. The kinds of things that make me a good blogger make me really, really awkward a lot of the rest of the time. I don't spend as much time with my friends, because they all want to go out clubbing or to restaurants I can't eat anything in because of gluten. Or, you know, maybe physically I just can't really do anything that day. That's hard to deal with, but even harder to share with some people. I don't want to be the killjoy. I feel like no one understands me sometimes, even with an amazingly patient boyfriend and so many ill friends who clearly understand. There's an element of loneliness and despair to being ill that cannot be explained unless you've lived it.

BUT! There are good things too!

I've made so many friends through being ill. We live in a lot of different places, so even without our conditions getting together isn't a real possibility for now for most people. But we get together for a few minutes everyday to share our lives with one another. And when I do feel like no one understands, I am reminded that they do - and that so many people have it worse than me.

I've talked in the past about Jordan, the daughter of one of my friends. On tough days for me, she posts something online or her mom will and it just reminds me of why I blog. I remember being that little girl, back when the internet wasn't really a good research tool for autoimmune arthritis and talking with people you didn't know in real life was a huge no-no. I remember feeling so lonely, because no one understood and no one knew what I was going through. I don't want that for Jordan, and thankfully she won't have that. She is just one of the kids facing arthritis that helps keep me going when I'm tired and just want to give up on raising awareness. Even if I don't feel like I'm worth a cure sometimes, SHE is.

Those days when I can go bowling with family, deep clean the apartment, or open a jar unaided - those kinds of things are amazing.

Working on projects like the upcoming World Autoimmune Arthritis Day presentation I'm doing gets me reading and researching, and those kinds of things really help me to grow emotionally. I definitely need it.

I think the best kinds of victories though are when I can do normal people things with my boyfriend. Those little glimpses into a normal life are things that I live for, and I wouldn't want to share them with anyone else but him :)

Thursday, April 26, 2012

Health Tagline

Side note: You guys, it's my birthday! Being 24 gets you nothing new. Oh well. Next year maybe I can rent a car!

I feel like it's hard to come up with a tagline for my blog - mostly because the name itself is kind of a tagline right?

The boyfriend came up with Not Standing Still's Disease. It means a lot of things to me. It means that, despite my illness, I am a busy bee. Buzz buzz. More importantly though, it means that I'm fighting back against my disease.

Right now, this has an especially important meaning to me. The last couple of months have been really tough for me - physically, emotionally, and mentally. As my disease calmed, it renewed my passion to fight it. I felt like I could make some headway, and hopefully I will.

I don't think there's any better way to sum up my feelings on my illness than saying that I won't stand it.

Wednesday, April 25, 2012

RA News

It's been a while since I shared news stories, so have some!

In the UK, it takes over 3 GP visits for RA to be diagnosed. Compared to the months and months most of us struggle, it seems kind of silly, but it's still too long. And Brits know that.

In Europe, more work with stem cells is being done. Right now, a Cx611 drug is in testing.

There is a low quality of care for RA patients (DUH) and there is some question as to whether the Affordable Care Act will help or hurt that.

Could bacteria in your mouth be making your RA worse? It's a possibility.

I thought this was cool: 11 Burning Questions with a student living with arthritis. BTW systemic onset JRA is Still's Disease.

Can you imagine living in the wilderness for a year? Apparently she can - and did. Yikes.

Sarilumab, another IL-6R drug, is going through phase 3 treatments right now. It'll be interesting to see how it works.

More talk of alcohol limiting RA pain. Gee, something that has been used as anesthesic for years might help pain? No way! :)

Tuesday, April 24, 2012

Health Mascot

As I write this (16 days early I might add), I'm a pretty good mascot myself.

It's Easter today. Yesterday, the boyfriend's wonderful family and I went bowling and out for lunch as our holiday get-together. I wasn't able to go to Thanksgiving or Christmas because of work, and I'm really happy things worked out this time so that I was able to join in on the fun.

I felt amazing yesterday. I bowled well, and enjoyed the good vibes around the family. Last night, my left hip started hurting a little bit. Today, I can barely walk. Between pulled muscles and aching joints, I'm shuffling like a chubby penguin.

The only thing really missing is a lot of swelling in my hip... But it's being made up for with my new normal combo of wrists, fingers, knees, and ankles.

If me shuffling around isn't enough mascotting, I don't know what is!

Monday, April 23, 2012

Your choice: All About WAAD

Hey you guys! What are you doing on May 20th? Wanna know what you should be doing? Okay!

May 20th is the first ever World Autoimmune Arthritis Day hosted by the International Autoimmune Arthritis Movement (IAAM). The 47 hour-long event - long enough to cover May 20th in every time zone! - is a free convention on the internets presenting wonderful information on living and coping with all types of autoimmune arthritis.

Autoimmune arthritis, a term developed by IAAM and a team of rheumatologists, is defined as any of the following diseases: Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjorgen's Syndrome, Systemic Lupus Erythematosis, Still's Disease, Juvenile Arthritis, and both Mixed and Undifferentiated Connective Tissue Diseases. The criteria for being labeled as autoimmune arthritis can be found at the link above.

So please check out WAAD. There will be live presentations and chats, as well as downloadable presentations. Yours truly is currently working on her downloadable presentation on Making the Most of Your Healthy Time. It's going to be amazing!

I won't be able to participate as much as I would like, as I'll be trying to become best friends with the producers of Jeopardy so that I can go to LA. Oooh, life is tough sometimes :)

Please, please check this out! You won't be sorry you did!

Note: If you're interested in learning more about IAAM, you can find more information at the link above or feel free to contact me. It's one of the wonderful organizations that I volunteer with, and I've met so many amazing people there who are really working hard for awareness. It's one of the best things I ever did to become involved with them.

Sunday, April 22, 2012

All Out of Spoons: A Parody

Watch me sing and play this on my ukulele!
Enjoy!

I'm lying alone with my head on the bed,
Thinking of how much I hurt
I know you hurt too. What else can we do?
Tormented and torn apart.

I wish I could carry a bag full of spoons
For times when my energy's low.
Stealing the spoons that tomorrow would bring
For today, it's just such a new low.

I'm all out of spoons. I'm so lost without you.
Don't think that it's right, you leaving me so long.
I'm all out of spoons. What am I without you?
Already too late to know moving was so wrong.

I want someone to carry me home
And away from this awful pain.
I'm reaching it's true, but we all feel it too.
This feeling the day is night.

But what would you say if I gave you some spoons
To get you through your day?
There's no easy way.
It gets harder every day.
Don't use your spoons 'til they're gone!

I'm all out of spoons. I'm so lost without you.
Don't think that it's right, you leaving me so long.
I'm all out of spoons. What am I without you?
Already too late to know moving was so wrong.

Oh I need another cup of
Joe! I need another cup of
I need another cup of
Another cup of Joe!

I'm all out of spoons. I'm so lost without you.
Don't think that it's right, you leaving me so long.
I'm all out of spoons. What am I without you?
Already too late to know moving was so wrong.

I'm all out of spoons. I'm so lost without you.
Don't think that it's right, you leaving me so long.
I'm all out of spoons. What am I without you?
Already too late to know moving was so wrong.

I'm all out of spoons. I'm so lost without you.
Don't think that it's right, you leaving me so long.
I'm all out of spoons. What am I without you?
Already too late to know moving was so wrong.

Saturday, April 21, 2012

Health Mad Lib Poem

Taken from: http://languageisavirus.com/cgi-bin/madlibs.pl

painful cow's painful cow

painfully i have never running, carefully beyond
any ankle, your wrists have their swollen:
in your most tender knees are things which shooting me,
or which i cannot swimming because they are too slowly

your red look quickly will unpumping me
though i have calling myself as ankles,
you eating always shins by shins myself as bike crying
(cursinging patiently, quietly) her itchy treadmill

or if your book be to flying me, i and
my doctor will swelling very easily, readily,
as when the pie of this ankle hurting
the music loudly everywhere smilinging;

nothing which we are to mooing in this neck watching
the joints of your cold fluid: whose pants
listening me with the feet of its toes,
talkinging fingers and margarita with each singinging

(i do not dancing what it is about you that rapping
and writing; only something in me blogging
the sangria of your wrists is calm than all bike)
stars, not even the shoulders, has such warm back

- Kirsten & e.e. cummings

Create Your Own Madlib on LanguageIsAVirus.com

Friday, April 20, 2012

Miracle Cure (A Dream)

Note: No. There isn't one, and this isn't real. Sadly, it's just a dream for now. But this is what my cure is in my mind  :)

Attention attention!

There is a miracle cure for autoimmune arthritis! All you have to do is drink a very large margarita every day.

Doctors aren't sure why they missed this. The medications traditionally used for all types of autoimmune arthritis, including Still's Disease and Rheumatoid Arthritis, put a limit on the alcohol intake due to negative effects on the liver and other organs.

A few months ago, news that alcohol helped to inhibit the activity of these diseases for some prompted a new study. The study, conducted in a secret location long rumored to be along the coasts of Mexico, forced people affected with many different kinds of autoimmune arthritis to give up their medications in order to participate.

The margaritas tend to be the most effective when iced and blended. The efficacy of the margarita can be stretched longer if need be, with other lesser alcoholic drinks substituted in the interim. Shots seemed to be most effective when several were taken in rapid succession. However, martinis and sangria seemed to be the most effective alternatives to margaritas.

It is unsure how this will affect children affected with these diseases. Currently, there is a study being conducted on the efficacy of alcohol baked into every day foods like chili and cupcakes on children. The initial results are very promising, with a number of children entering remission from just one alcohol infused meal a day. Some are worried that exposing their children to alcohol so early will have a negative effect. However, in many foods the alcohol cooks out only adding flavor and apparently the ingredients that help autoimmune arthritis calm down.

It is unknown for now how this will change disability claims for those on these diseases, however. It is kind of hard to work when you have to be plastered fairly often.

Thursday, April 19, 2012

5 Dinner Guests

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 Ball

    Lucille 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" 
  • Renoir

    I'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 Lama

    My 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 Colbert

    These 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.

Wednesday, April 18, 2012

Open a Book

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 ;)

Tuesday, April 17, 2012

Learned the Hard Way

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.

Monday, April 16, 2012

A Review: After the Diagnosis

Sooo this 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.

Sunday, April 15, 2012

Writing Style

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.

Saturday, April 14, 2012

My Dream Day

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!


Friday, April 13, 2012

10 Things I Couldn't Live Without

Before writing this post, I'd either look at it and think that 10 things were really a lot to think up, or that it wasn't enough to encompass the things I need or love the most.

The list below is in no particular order, except the order my scattered brain gave them :)


  • The boyfriend

    If you've been reading my posts lately, you'll know why. He's amazing and he helps me out so much more than I'll ever admit, even to him.
  • My friends

    I don't spend a lot of time in-person with most of my friends. Some live tons of miles away, and others just have schedules that are hard to match sometimes. Some of them I have never even met in person. Even if we aren't able to spend time together, they are such a source of inspiration and comfort for me. One of my very best friends recently turned down a job in Texas to stay at the college she works at here in Wisconsin. I was excited for her career-wise if she had taken the job in Texas, but I am so happy that she chose to stay here. I like having her around, even if like I said we don't get to spend much time together.
  • Laptop

    There are some days when I can barely make it to the couch from my bed. Having the laptop opens a world of opportunities for me that I wouldn't be able to have otherwise. I'm so grateful for it.
  • Smart phone/iPod Touch

    Likewise, my smart phone and iPod make even more things possible for me. Maybe I need to lay in bed more, or maybe it's tough some days to use my laptop. My smart phone has a swype feature, meaning I can type by connecting letters instead of finger pecking individual keys. It can definitely be a lifesaver on says my fingers don't want to type.
  • Sunshine

    I don't mean this in the literal sense, because without the sun we would all die. Yay ice ages. But I mean it more from the standpoint of being outside in nature and soaking up the sun. One of my favorite things to do is to drive around on a nice day with the radio cranked up and the windows down, wind blowing my already crazy hairstyle all over the place (tip: much better for your hair than a blow dryer). No matter how sick I feel, this is always something I love to do. Feeling the sun on my skin and having that warmth baked into me is one of the most amazing feelings as well.
  • Rain

    I love rain just as much as sunshine. Having grown up in the northwest, I'm very used to the rain. It can be calming, can represent and help me get out my emotions, and sometimes it just feels amazing to run around in. I love wearing flip flops in the rain, and feeling that water on my toes. I love the way it smells around raining time - fresh, new, vibrant. And sometimes rain can break humidity, which is such a wonderful thing to have happen. I can't even explain the difference in pressure on my joints... except maybe that it's kind of like having a tooth that badly needs to be pulled. When it gets pulled and the pressure in that area is gone, it feels so much better. It's kind of like that, only in the all over balloony joints.
  • Blogging/Volunteering

    You guys are like my therapists, and you don't even know it. Blogging helps me express so many parts of myself that are hard to share with others, even the boyfriend sometimes. It's hard to say to him, "I'm hurting really bad lately and I feel worthless and scared." But I know that I can put it on here. He'll read it, sure, but it's different than having to admit that directly. Blogging led me to volunteering more. Now I get to be involved with the autoimmune arthritis community more, through my roles as an Arthritis Ambassador for the Arthritis Foundation and as a volunteer for the International Autotimmune Arthritis Movement (IAAM). As a part of all this, I've made some of my closest friends, and for that I'm very grateful.
  • Laughter

    I use laughter to diffuse tense situations and to get out my nerves and stress. There is nothing worse than being stressed and in pain and unable to fix either problem. Laughter helps me do that, and not take myself too seriously. Plus it is an amazing pain reliever sometimes.
  • Electric toothbrush

    From a really practical standpoint, it can be really hard to brush my teeth. Holding a tiny toothbrush and having to put pressure in while making circle motions just isn't something that is comfortable (and sometimes even possible) for my hands. My electric toothbrush is a lifesaver.
  • Canes

    I have two of them. Though I have only had to really use one for a few times, it is a comfort for me to know that they are there if I need them. I think of them almost as a kind of security blanket I can lean on.

Thursday, April 12, 2012

Stream of Consciousness Day

Ahhh these are always weird. It's going to be hard not to edit what I write I think in this post, because I usually go over my posts a few times before I post them or reword things 85 times.

I have so many projects that I'm working on right now. I don't really know where I am in any of them. It makes it tough to keep them going. I have some more posts that I wanted to do about being a caregiver and support system, but I just dunno. I have been doing more research about Still's in general, and would like to post more on that too. I think the thing I'm most excited about coming up is the 1st Annual World Autoimmune Arthritis Day (WAAD) hosted by the International Autoimmune Arthritis Movement (IAAM). I'm working on one of the presentations for the 47 hour live event, on how to make the most of healthy time. I think it's a really poignant thing for me, since my flare broke and I've been struggling with how to handle my time. I'm actually writing this post on Monday, the 2nd, because I've been using my healthy time to pre-write much of these Health Activist Month Challenge posts. I could be working on these other projects, but right now I don't feel like it. I could be sleeping, but I'm not sleepy. Even though my wrists have been swollen all day, and my fingers have been stiff, blogging helps me get out emotions and now that I know and communicate with so many people who read my blog, I feel the need to talk to you guys. I need to blog more, I really do. I love doing it, and if I could turn it into my full-time job, I would in a heartbeat.

Hey guys, I lurrrrve you :)

Wednesday, April 11, 2012

Theme Song

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

Tuesday, April 10, 2012

Dear 16-year-old me

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.

Monday, April 9, 2012

Keep Calm And Carry On Poster


My task for this post was to create my own 'keep calm' poster. I rather like this one, I must say.

Sunday, April 8, 2012

Best Conversation I Had This Week

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.

Saturday, April 7, 2012

You Choose: The Phantom of the Illness

"Write about what you want today."

Have you ever seen The Phantom of the Opera?

I love musicals. I was in a few in high school, and watching them is equally amazing. Music is one of my favorite things and I love acting, so naturally the two coming together is perfect in my mind :)

I've talked a few times in the past on music and the musical Rent as being an inspiration for me on how to deal with illness. I recently found a copy of Phantom live at Royal Albert Hall. I'm not sure why it finally clicked after watching it a billion times, but the journey that Christine takes into the darkness with the Phantom seemed very reminiscent of a flare-up. Perhaps it's because I'm not in one right now that I could really see it.

Christine has been training her voice with the help of the Phantom, whom she believes to be the Angel of Music. It isn't until she gets her big premiere as the star of a play that she learns how he really is though. She experiences a wonderful nights, getting rave reviews and connecting with a long lost childhood love. The Phantom, jealous of this gentleman, kidnaps her and takes her down into his lair. It is unsure, from the play, how long she remains down there and exactly what happens to her, but one can only guess. At one point during their encounter, she rips off his mask to see that he is horribly disfigured.

She continues to fight the memories of her time with him, even during what should be the best time in her life. At some of the most inopportune times, the Phantom keeps appearing and ruining performances and trying to come between Christine and Raul, who in the second half is now secretly engaged to her.

She constantly lives in fear that he will appear and ruin everything.

In the end, Christine has to choose between living with the Phantom to save her lover's life, or save herself at Raul's cost.

If this isn't what it's like living with a chronic illness that strikes at any time, I don't know what is. For much of the play, Christine is afraid of what awaits her when she takes on what she knows will not end well - performing in the play that the Phantom has written. She knows that it is a trap but also fears that it is inevitable.

Since my flare finally broke recently, I find myself thinking about this. I obviously don't want to dwell on the fears and inevitability that my flare will return, because I want to be able to enjoy my 'normal' time. Sometimes with this disease, I feel like I'm being torn in half between the life I want to live and the life I'm forced to live. My disease sets up traps, like letting off just enough for me to feel like I should exert myself... and then I pay for days if not weeks.

For now though, I feel like the play is over and I have conquered the Phantom... until someone pushes play again.

Friday, April 6, 2012

Health Haiku

Today's prompt: "Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like."

Hate my arthritis
I've never been normal so
Don't know what I miss?

Arthritis is not
just what your grandparents had
It is so much more

Wake up with stiffness
15 pills a day or more
Fuck you fucking pain

People judge me cause
They think I'm fat and lazy
I've got arthritis

Wish I was normal
Just maybe for one whole year
I so miss running

Body hates itself
Medications can't fix it
Is this forever?

Got pain every day
Nothing really seems to help
Will it ever stop?

Thursday, April 5, 2012

Ekphrasis Post

"Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!"

"A good life is when you assume nothing, do more, smile often, dream big, laugh a lot, and realize how blessed you are for what you have."   unknown by {lisa.anne}

Living life with a chronic illness is like being on a Ferris wheel. You have your ups, and your downs. Sometimes it takes forever, but other times those ups and downs come very quickly - in a matter of hours.

Thankfully, right now, a very very long flare has broken. With the help of an increase in prednisone, I have been able to feel amazing the past few weeks. I consider myself very lucky to be on the top of the wheel right now, because I've spent so much time on the downfall.

Usually, I'd be worried about when the wheel will start moving again. It would preoccupy my thoughts, making it impossible to enjoy this time. But for now, I'm just so thankful to be able to be active and have a taste of normalcy. I'm going to enjoy this time and use it for all it's worth.

Eventually that wheel will start moving again. But when it does, I'll be ready.

Wednesday, April 4, 2012

Why I Write About my Health

"Reflect on why you write about your health for 15-20 minutes without stopping."

Oooooh my.

I started writing about my health as a way to tell the boyfriend what I was going through and the tough things I might go through in the future. I used it as a tool to communicate with him, to say the things through writing that I couldn't bring myself to say to his face out of fear of rejection.

Then, I did it because it was nice to be able to get out my feelings and my anger especially, holy cow.

But then something amazing happened. I began to get emails and comments from others with rheumatic diseases. People not in my immediate family and circle of friends were actually reading my blog. I felt so amazing, knowing that I was being able to help people.

It just grew and grew. I began to get more emails from people, comments, likes on facebook. As I write this (like 2 weeks early I might add), I exchanged emails with a twitter friend today on a piece I wrote. Her response was tear-jerking - because I had tear-jerked her just with my story and a mirror of how other children with juvenile arthritis go through life.

For now, my main focus is to raise awareness about these diseases - and especially the fact that children suffer these horrible, horrible pains and complications. Arthritis is not osteoarthritis by default - it instead consists of many, many diseases. I'm tired of people looking at me like I'm a fraud when I park in my handicapped space (whatever old guy, keep walking!). I'm tired of not being able to get people to give up their seats on the bus for me. It's time that people understand that these diseases happen, they're not pretty, and they can maim and disable very very quickly.

I write so that the children I know with JA have someone to talk to, so that they don't have to go through staring contests with cranky old people. I want people to know, to understand, and to help. One day, we can get a cure, but we've got to fight for it.

Tuesday, April 3, 2012

Superpower Day

"If you had a superpower – what would it be? How would you use it?"

Dude. I don't know.

It'd be cool to fly. I'd love to visit family without distance being an issue. But then, think of what that would do to my already aching back!

I'd love to use telekinesis. When I can't move, I can move shit with my mind. But I would get lazy and use it when I don't need to, like my handicapped placard.

Talking to animals would just be friggin' amazing.

Ultimately, though, I'd have to say that I'd love the power to heal. I hate being sick. It has definitely made me what I am today, and I'm grateful for that at least, but I'm SOOO over it. I'm sure others are too.

And who the hell would turn down the ability to go heal all the little kids with illnesses? Seriously.

Monday, April 2, 2012

Quotation Inspiration

"Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes."



“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
-Lao Tzu

My whole life, I have been very lucky to have a huge support system. My huge family is crazy, and some of them often ignored my side of the family for things. I'm not bitter about it - we did it too. Ours was a family that was centered around chronic illness, with my great grandmother having been the uniter having suffered with MS for much of her life. When she died, the big together family split off even more. But still, some of us keep (kinda) in touch.

My mom saved my life, literally, by refusing to believe my disease was leukemia, refusing radiation/chemo and biopsies. She fought tirelessly to find the real disease, to document my symptoms, and to deal with my father (read: douche; sperm donor) deciding that maybe he did want custody of me if he'd have to pay support. As my sister fell ill as well, she and I fought often as girls tend to do. But our illnesses have brought us even closer.

As a child with a chronic illness, other kids felt bad for me but they didn't understand. They were my friends nonetheless. In middle and high school, I found my niche - the best group of friends I've ever had. Together, we suffered through bullying, thesis papers, projects period, and International Baccalaureate exams. Some of us got full diplomas, graduated with honors, and became valedictorians (North Scholars) together.

And in college, I met the best friends I've ever had - my old roommate Katy and my boyfriend of over four years. I can share anything with the two of them. Katy and I don't get to spend as much time together as we'd like, because our schedules don't match up well sometimes. But when we do, it's wonderful. She intently listens, and we can both gripe about things and share our worries.

But my boyfriend is, and has been for so long now, the biggest help in my life. When he looks at me, he doesn't see illness, a collection of swollen joints and misfiring nerves. He sees me for me - or maybe sometimes more than I am. I am not gorgeous when I wake up... usually. He is so helpful and most of the time really really good about not judging me... and when he does get frustrated, he keeps much of it to himself. So he's pretty cool I think.

This quote is mainly directed at him, more than the others I've listed. I was so afraid to start medications and to get the medical attention I needed. He encouraged me. With his love, I felt strong enough to go to the doctor. And because of the courage I have - and the dreams I have for the future - I carried out my plans and began walking on the path I am on today. I am so, so very grateful for everything he does for me, and helps me to do.

Sunday, April 1, 2012

Interview with Carla Jones, Author of Death by Rheumatoid Arthritis

You guys, I am soooo excited to share this with you! A few weeks ago, I noticed that one Carla Jones was following me on Twitter. The name seemed really, really familiar. Upon taking a closer look at my Kindle App on my phone, I quickly realized why.

Carla Jones wrote an e-book about her mother's battle with rheumatoid arthritis and how, sadly, complications from the disease caused her mother's death. Carla is so, so very brave for writing about this, and is using her mother's story to promote better understanding of the severity of RA.

As a loved one of someone who suffered with and died due to RA, I thought that she would be able to offer a unique perspective on my recent focus on our support systems. I am so, so thankful that she agreed to answer my questions.

So without further ado, enjoy this awesome interview!

In the introduction to your book, you said that you would want to know complications associated with RA if you were diagnosed. Do you think that organizations should be making this a goal of raising awareness?


Most definitely.  I think it’s great that many arthritis support groups and organizations have a positive approach to a life dominating disease, such as RA.  However, [I] strongly believe that patients need to get a well rounded education, on the multiple complications that can accompany rheumatoid arthritis.

Or, to put it another way, do you feel that sometimes organizations put too much of an emphasis on the positive, avoiding the negatives of RA and like diseases?

Yes, and I’m not alone.   I’ve heard this comment from one of leading spokesperson for RA, Kelly Young, founder of The Rheumatoid Patient Foundation, as well as an employee from a well known arthritis organization.   Patients need to have a balanced education on positive interventions, yet need to understand the negative attributes associated with RA.  The online arthritis community of patients are the true forerunners in this arena.  I know that as we work together, that eventually, people will learn how to better take preventative measures to avoid serious complications from RA.

Your mother seemed to be a very positive person. Were there ever any moments where you could see a change in that due to her illness?

Her continual optimism was forged by her faith as a Christian.   Seeing past the physical to the spiritual core of every situation enabled my Mother to experience hope, in a person; not a circumstance.  This spiritual vantage point allowed her to keep going mentally and emotionally.  Alongside any chronic illness, depression and anxiety are present.  Thankfully, she made a daily choice not to allow these traits, to dominate her attitude. 

Were there ever moments where you had to stop being a dear daughter and instead use tough love regarding your mother’s illness and treatments? If so, how difficult was that for you?

Yes, my sister and I needed to be hard-line advocates on a consistent basis, in order to aid my Mother at every turn of her treatment.  Ultimately she made all the choices about her care, but we did our best as a team to investigate all treatment options beforehand.  The biggest challenge our family faced was getting her a proper diagnosis and regulating her excruciating pain. Due to the advancement of her disease, her pain was difficult to get under control.   Frequently my sister and I would question the doctors about switching or upping her pain-killers.  This was a terrible, ongoing problem.  As she lay there, I remember literally seeing the tormented waves of pain wash over her face, in spite of the fact that she was pumped up with high doses of narcotics. It was a terrifying and helpless feeling.  One E.R. nurse told us that she had never seen anyone in the E.R. taking so many narcotics and functioning as normally as my Mom.  

Were there ever moments where you felt taxed and worn down by caring for your mother? What are some ways that you handled the stress and pressure that go along often with being a caregiver?


Thankfully, she had help from many nurses and nurses aids so I was not alone, for the last two years of her life. There were periods of feeling completely overwhelmed with taking care of my Mother but, I knew she needed me and I was going to be there for her. 

Prayer helped me through this long dark period, for it is the number one way I handle stress in my life.  Conversing with God and reading the Bible put my circumstances into a healthy perspective.  A verse that aided in my stress:  Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  This one simple verse was a huge comfort for me.  I also distinctively recall sitting on my couch and just thinking the words, “Trust me.”  Sounds far-out and bizarre to some, but I know this was God’s way of redirecting my thoughts back to Him. Talking things out with my family and friends helped immensely.  Where there is understanding, there is validation, after validation, peace follows.

I have seen you list several medications in your book, but no biologics. Was your mother ever on those? If not, do you ever think things might have turned out better if she had been?

She was on Enbrel, Humira and Remicade. Unfortunately, they did little or nothing to slow her RA.

Were there ever days where you considered alternative treatments, like massage and healing touch? Why or why not?

I asked her if she would consider massage therapy. Since her frame was incredible frail and brittle, the thought of anyone rubbing her skin, turned her off.  She was concerned that a therapist might accidentally break one of her bones. 

If you could offer any advice to people in a caregiver/loved one situation, what would you say?

I would tell them to surround themselves with empathetic, positive people.  This may mean family members and or a support group.   Take care of yourself!  Don’t feel like your loved one solely depends on you to do everything for them.  Learn to take time out daily for relaxation to get your mind on something you enjoy.

Your mother became pretty religious during the course of her life. What kinds of effects do you think her faith had on her illness?

Her faith was her life-blood and sustained her.  God transformed and was the center of all areas of her life.  Studies show that those with faith in God fare better than those that do not.  This could be mentally and or physically depending on the person.    

Was it difficult to write about your mother’s passing, or was it more therapeutic?

It was a combination of both.  Initially, I just started journaling about my relationship with her and of how I had missed her.  As I have said before, she was my Mom but honestly was the best friend I ever had.   Before she died, I read her a “Thank You” letter I composed, for all the many things she had contributed to my life. Afterwards I wrote a short note of the many ways she impacted my life with her faith and love, at her funeral.  Then I started getting mad.  Mad that she was not able to be saved and very well could have been.  I thought there must be others people that have died from complications due to RA, even though I had never heard of such a thing. She can’t be the only one.  I immediately felt the need to inform others of the reality of this agonizing death.  At this point I began researching all that I could on the topic.  It definitely was an emotionally draining process, having to relive the grief throughout the course of writing the book.

For those who haven't read the book, your parents separated quite some time before her illness set in. However, your father seemed to be around a lot during times when you both must have needed him the most. How did he handle the situation? 

Yes, he was very supportive and understanding.  The two were the best of friends.  He was in constant communication with the three of us.  My Dad was his usual positive self and always had helpful advice for my Mother through every stage of her decline.  Her death was extremely difficult for him.

Do you have any advice for newly diagnosed people and their loved ones?

Get informed:  Seek out well rounded education on RA. Don’t limit yourself to whatever information your doctor is able to share with you.  He or she has a limited amount of time and knowledge. Read up on RA and ask specific questions suitable to your symptoms.  Get support: Online support groups for RA are wonderful!! I’ve had nothing but positive feedback from those involved in on the social media sites.  Getting empathy is so important when you are struggling with any difficult situation and I’ve met such caring people from this source including you! [YAY!] I find your blog information to be helpful, informative and personal.  I respect and applaud you for raising awareness to Still’s disease and RA.   Another person to connect online with would be Kelly Young, aka “RA Warrior”.  Her blog contains an array of helpful information for those fighting the disease.  She’s a dynamic, educated woman with thousands of followers, including doctors.   I met her on a trip to Florida last year and I now have the extreme privilege of calling her my friend. 

In closing, I'd like to note that you are donating all your proceeds from the sales of your book to the Arthritis Foundation. I think that's pretty kickass, pardon my French :)

Thank you kindly for the compliment, Kirsten. It’s the least I can to do contribute to those fighting this precarious disease.  My hopes are that one day soon, a cure is found and I believe it will happen in our lifetime.  It was an honor being a guest on your blog. You are an inspirational support for many.

Thank you SO much Carla for agreeing to do this interview, and for your kind words :)  It has truly been an honor to be able to learn more about your relationship with your mother, and how you handled this very tough time in your life! I hope that your mother's story continues to touch the lives of others as it has touched mine.