Category: health activist writer’s month challenge

You Choose: The Phantom of the Illness

Posted on by Grayson

“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.

Health Haiku

Posted on by Grayson

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?

Ekphrasis Post

Posted on by Grayson

“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.

Why I Write About my Health

Posted on by Grayson

“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.

Superpower Day

Posted on by Grayson

“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.

Quotation Inspiration

Posted on by Grayson

“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.

Interview with Carla Jones, Author of Death by Rheumatoid Arthritis

Posted on by Grayson

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.

Health Activist Writer’s Month Challenge 2012

Posted on by Grayson

Here’s your mission if you choose to accept it:

Read a lot more of my blog.
No, seriously.
The month of April is the HAWMC for this year for WEGO Health. That means that for every single day in the month of April, you will read at least one post from me every day!
Well, okay, you don’t have to read them every day. But I have to post them every day. If you’re a blogger, you can still join at the link above! All the cool people are doing it 😉
This blog post will self-destruct in… Wait, that’s not a Blogger feature?

Dangit.

Side note: I’m forgoing one of the prompts, meant for Sunday 4/1, to post an interview with author Carla Jones!!!!!!! Super excited!