From Our Editor:
This is going to be our special deluxe issue, in honor of National Arthritis Awareness Month in the United States.
It is going to be filled with a variety of entries, from several countries to help us out, which is very cool. We really appreciate their support. Represented will be Australia, the UK and Canada.
Since I was diagnosed with Rheumatoid Arthritis, 23 years ago this month, I am going to be sharing something as well.
Again, if this is something you would like to be a part of and live with a chronic illness, please feel free to contact me [email protected]
We hope you enjoy our special issue, with GOING BIG WITH BLUE, ALL 100 SHADES!
CJ Poetry Editor
In this issue:
The Friendship Bug (Poetry by Judith Flanagan)
Bad Days (Poetry by Anita Poole Ellison)
Pivot Point ( A prose piece by Jonathan Hunter)
Mr. and Mrs. Wood Duck (Photograph by Stephanie Wood)
Pretty Good (Poetry by Shawna Graves)
Raising Awareness Worldwide with Friends (Collage by Judith Flanagan)
Stillness (Photograph by Shawna Graves)
A Tale of 23 Years (Short story in Trevor’s words, by Brenda Kleinsasser)
Judith in her own words:
I am Judy from Australia and I was diagnosed with Rheumatoid Arthritis in 2012 an autoimmune form. I love photography, animals, creativity, music, movies and the World Wide Web. Before my diagnosis I was studying Web Design and Networking but was unable to continue.
FUN FACT ABOUT ME:
I have recently become a volunteer with the International Foundation for Autoimmune Arthritis. I want to be a friend and support for people with Illness. My motto United We Stand Hand to hand represents you’ve got a friend in me and I understand which is the idea behind United Advocacy and why I wrote the poem.
THE FRIENDSHIP BUG
A Poem of gratitude for all my new found friends
I want to thank you all so much and hope our friendship never ends.
You are always here for me
and I will be for u too
especially during those times when we don’t quite know what to do.
It’s great to have each other cause we all understand
so from now until forever
I gladly take your hand.
Thank you so much from the bottom of my heart
lets always stand united and never let us part.
Let’s hope that our illness’ don’t cause us too much strife
and know that we have a bond between us
that I know is going to last for life.
So I end this poem with a big special hug
In the hopes that you too have caught the Friendship Bug.
If anyone would love to like my page then here is the link http://facebook.com/unitedadvocacy
Judith Flanagan -RA Warrior -United Advocacy
Anita in her own words:
On a positive note 😉 I am a stay at home mum of two gorgeous boys, Luke 12 and James 9, who, along with my lovely hubby Andy, are my reason to put up a good fight and stay positive. We live in the South East of England and have enjoyed caravan holidays for the last 5 years which has produced some laugh out loud moments – tight spaces, stiff joints and deck chairs 🙂 all made more hilarious with the addition of a glass of wine or two 😉 I love to help people and enjoy a challenge, one is to get back to work now my conditions are easing up, the other was to start knitting to help keep my fingers and hands busy and moving. I have now knitted 3 Monkeys, 1 Bunny, 1 Hat, 1 Tea Cosy and 6 Beards as presents for people, it took me a while but I really enjoyed it. I also love to smile and have made many friends accidentally as they thought I was being specifically nice to them with my big cheesy grin 🙂 I love it when people respond and a smile is so ‘catching’, in fact I would say my personal motto is Keep Smiling :))
I have mild psoriatic arthritis which usually attacks after high stress or body trauma i.e., giving birth. My attacks usually last about 4/5 years then go into remission leaving me with stiffness and ‘creaky joints’ which can flare with hard use (gardening, extra-long walks etc.) this poem reflects my worst moments, when I couldn’t see the end and feared for the future. I am now going into remission and bad days like this are hopefully a thing of the past…..until next time.
You start with a creak,
Like a rusty old joint,
That needs oil and a tweak.
Rotate and a crunch,
Just to get moving,
With a shuffle and a grunt.
Next comes the rocking,
Momentum full force,
All to get….
Out of bed of course,
Or up out that chair,
Where you have collapsed for a mo,
Can’t sit for too long,
You seize up as you know.
Worst is when
it all goes to pot,
And help is needed,
Wanted or not.
Up off that toilet,
Up out that chair,
Back in it again,
Or off up the stair.
Wishing for a bungalow,
Stairlift of hoist,
Depressed and vulnerable,
Eyes always moist.
12 yr old son,
Helping you up off the loo,
Embarrassed, trying to laugh,
Whilst his eyes roll at you.
Feeling to young to move so slow,
Feeling too old, defunct, all alone.
Wanting to shout “HELLO, IM STILL HERE!”
My body’s been taken over
by a monster my dear,
It’s not really me,
I can’t help being slow,
You walk ahead,
I’ll catch up in a mo…..
Anita Poole Ellison
Jonathan in his own words:
The path to finding the gift within my RA has taken me 15 years and many interesting turns. I see now that the wounded carry a special magic, a soft healing smuggled through the Portals of Trauma.
I make things and get into nature when my body allows, and flog my mind mercilessly when it doesn’t.
by Jonathan Hunter
In the last 14 years of having RA I have been somewhat cavalier about the seriousness of the ailment. I was living proof that with will and grit one could muscle through this. It helped that by RA standards I had a fairly mild case, with an unorthodox symptom presentation that mostly attacked my major joints, as opposed to the classic “hot and swollen hands” that rapidly lead to deformations.
Sure, the pain was overwhelming at times, but it always receded and left mercifully hazy memories. A combination of opioid fug and neural override, I had assumed, not wanting to enquire to deeply for fear of unlocking the door that held all those nightmare moments away from me. The physical disabilities required creative ‘workarounds’ that changed daily with the circumstances, but that was simply a challenge to my creativity and resourcefulness. Hell, I was managing major construction and remodeling projects on my own and clients houses throughout that time! Strapping up an arm, or immobilizing a hand was routine in the mornings. Using my chin and head to stabilize things, propping here, foot-nudging there, I managed to produce built-objects and spaces that amazed me. Bathrooms, guest houses, gazebos, sculptures and more, all churned out with happy smiling clients at the end of the day. I was doubly proud knowing what it took of me, and allowed myself to bask in the heroism and masculinity of it. My business card was titled “Homo Capabilis”, and made no mention of the days I’d be taking off while on a project, because I knew I’d bounce back “in a few”, as I cheerfully told clients.
The depression occurred to me as a pack of feral black dogs that need outrunning occasionally after they come snarling unexpectedly around a corner, baying for my hopes and dreams. They were something I could usually outlimp after a few days or drawn-out couple of weeks, sometimes gaining ground, sometimes coming so close to their slathering all-consuming jaws as to be terrifying, losing possibilities with each nip in a shrinking dark world. But always, the world of wife and son would tug me away from their tireless mauling, back to the world of light and doing and hoping and planning. Plans, we found, were the best garlic-and-crucifix remedy for warding off my personal pack of night-hounds; casting our hopes and say-so like crap dice on a calendar, we’d day by day, inexorably, draw them towards us with joy and anticipation, creating the illusion of a certain future as people do in the uncertainty of life.
And so I fashioned a new life that largely managed to mimic the old. At a glance, no-one would judge me disabled, and I liked it that way.
In the past year though, my left shoulder had a persistent twinge and related weakness that I could not shake. I managed to ignore it, and was lulled by my own narrative of always bouncing back. After all, that’s the kind of RA I had, right? During a 3 week rafting trip on the Grand Canyon, I pulled my weight in almost every regard, begging out of cleaning dishes and food prep on only a couple of evenings, and making up for it by packing two rafts every day. I chose to row a raft on two windy stretches toward the end of the trip, for experience and sense of control perhaps, as some personal dynamics in the group were tense and I was feeling a bit powerless. My own machismo and urgent desire to reach the end masked how I was tearing up my left shoulder joint tissue, my efforts in maching the majesty of the canyon with each oar-stoke simply tearing myself apart.
The trip ended and I returned to Winter in the high desert, nursing recurring flares in my left shoulder. Every week, it seemed, I would have a left shoulder flare punctuated by another random joint each time, reinforcing my hatred for the cold that would always mark the low point of my physical year. Winter brought the longest and most intense flare-ups with a reliability that had me not schedule any clients from November through April this year. The holiday season went in a blur of asymmetric movement, my body pinned in the universe by a shaft of pain in my upper left body, a living butterfly pegged through a wing to a board. By March there was still no relief. Between flares there was still pain, and an awful “Thunk!” sound as a tendon rode over some bony protrusion in moving my arm. Hints of a life with reduced movement were starting to filter through my unconscious, rapidly brushed away by the vigilant monitors within. Last Friday, I woke up after a rough night, ginger in my movements until I had gone through the daily ‘flight check’ that precedes getting up, and found that I had ignored the warnings of doctors and family out of sheer hubris. My waving off of medications as not warranted by my mild and intermittent symptoms had come back to bite me in the ass.
Repeated swelling of the joint capsule had left it stretched and unable to recover as it had in the past. It let me know this by falling apart. Literally. The head of my humerus hung out of the socket when I relaxed the muscles holding it in. Somehow, with complete passivity, beating me up with my own stupidity and certitude, and clawing in all future markers without a twitch of effort.
In the distance I can hear the wild pack howling, renewed.
It’s not very often that the editor gets to say something personal about an entry, but in this case I can. I had the honor and pleasure of meeting and spending a week with Stephanie or Stevi as she prefers to be called, when she came to North Dakota. We had a wonderful time getting to know each other. We did lots of sightseeing, which in a future issue we are hoping to share with you. Stevi is a wonderful photographer and here, she shares another of her great photos, with a new camera that she recently purchased.
Stevi was our very first entry for Poet’s Corner (& Artists too), so this was an extra special blessing, to be able to spend this time with her.
If you want to check out Stevi’s photography, here is the link: https://www.flickr.com/photos/stevid/
Stevi on how she came about taking this photo: I shot this this afternoon through the window. They are very timid ducks and slightly smaller than the more common and more bossy mallards. I was busted taking the shot that even through the glass and a little ways away in my neighbours garden, they could hear me.
Shawna in her own words:
I have become addicted to photographing the flowers in my back yard. When everything is in full bloom I like nothing more than sitting in my lawn chair at the back of my yard and taking in all the beautiful colors. As a kid my parents maintained a large vegetable garden and I hated working in that garden. Now I would give just about anything to have a garden like that again.
Two little words have served me well
How long I don’t remember
A question asked and in response
I spout my simple answer
I do not think before I speak
Never do I ponder
How easy it might be if
I would give a truthful answer
No one stops to hear my words
No reason to consider
That they might want to know
The truth to their hasty question
They pass right by and never pause
No time to reconsider
I recite my words as I’ve rehearsed
No one knows the wiser
If they might care to stop just once
And question me in earnest
They might see that I indeed
Am not quite as I say
Until they pause a single moment
To look upon my face
When they ask “How are you?”
I’ll say “Pretty Good.”
Judith has a second entry with a collage she created to represent her friends all over the world.
Shawna returns with a second entry that she describes in her own words: We rush so fast around this world that we forget to stop, watch, wait, and listen. When we do amazing things appear to us.
As I mentioned in my editor’s note, I am going to be sharing my personal story of living with RA. This is told by my storyteller, Trevor. I hope you enjoy it.
A Tale of 23 Years
by Brenda Kleinsasser
Trevor, The Tell Tale Dog, here again, to share with you another inspiring story of Brenda’s life. It has now been 23 years, since Brenda was diagnosed with Rheumatoid Arthritis, at the age of 31.
It was a very dark Wednesday in May when she was in the rheumatologist’s office, when he said, “I am afraid that this is going to take longer than we thought.” He didn’t even really come right out and say she had RA. Her nurse handed her a bunch of pamphlets, which were to explain, how she was supposed to live with this disease. She was supposed to go back to work after hearing or not really hearing this news. She was in shock and she thought her life was really over, as she knew it.
She had been having some problems for quite some time. In fact she had had an RA factor test done along with an ANA, because they were suspicious of Lupus, but that came back negative. The RA factor test however, was extremely high. She had had a bad bout with bursitis in her left shoulder, so they decided to do some tests. Her primary care physician was gone, so they sent her home to try and get that shoulder feeling better.
At this time, she was still not officially diagnosed and she went back to work, but over the next few months, she continued to get worse. Her hands, ankles, and feet were the worst at this time. In fact her left pinky turned into a trigger finger. She would have to literally pull it back with her other fingers.
She was walking to work, which I have no idea how she managed this. After she was diagnosed, she started using a cane. She was getting worse really fast. Her doctor and rheumatologist decided that they had to get her on something quick. They had discussed Plaquenil, but they both felt, that would take too long to start working, as she needed something right away. They thought Methotrexate would be the best option.
She started it, but it made her sick, so they had to lessen her dosage. She still would get so sick and fatigued from it. All kinds of things were happening. Her thick hair was now much more thin and she developed sores on her scalp, along with chronic sinus problems, which she still deals with to this day.
They tried everything, injecting it, but they soon ran out of places, because she developed scar tissue. So they would put the injection in yogurt or juice, but nothing really helped, she still got so sick. She finally just decided she had had enough. After 4 and a half years, she started weaning herself off of it and 3 months later told her doctor. She wouldn’t recommend that you do this.
It was at this time, that she was able to start exercising again. She was doing her range of motion exercises, twice a day, which she still does. She wanted to start working out and it really seemed to help. Her fatigue lessened.
There really wasn’t anything out there that she could really tolerate. Biologics were not even out yet. It was finally in 2001, that she decided she should start doing some research on Enbrel. She researches everything. They give her such a bad time at work about this. If there is something new they are talking about, they will say “Brenda, you should research this and she usually does.”
Anyway, she approached her doctor one day and said, “I am finally ready to consider Enbrel.” So they made all the necessary calls and she received a card and was put on a list. Yes, at that time being it was so popular, it was hard to get.
She went to her rheumatologist and he thought it could be quite some time before, she would get on Enbrel, so he wrote her a prescription for Arava. She never filled it. She felt the Enbrel would become available. She just wasn’t comfortable with the fact of more hair loss or even worse problems which could occur because of this drug.
This was about a month before. On Friday, April 13, 2001 notice the date? It was also Good Friday, she received a call at work that Enbrel was now available and would she like to start it?
The next Friday, April 20th, she had her first injection of Enbrel. They had her stay a while after, because they wanted to make sure there would be no bad reaction.
The first couple of times, she had a headache or would feel nauseous, but that went away within a month. So every Thursday for over 13 years now, she has been on what she calls her miracle drug. There are times when she cannot do the injections, like when she has any type of infection. She also keeps a diary, because it’s hard to remember where you injected last, because you can’t always tell. She now uses the auto injector, which is so quick and easy to use.
Living with RA while it can really be a challenge, can really turn out to be a blessing as well. You ask how can this possibly be so?
Someone once told Brenda that she was stronger than this disease and you know she is. Her strength was really tested when she went through her brain tumor surgery for her non-malignant meningioma on September 8, 2008. It was again tested, when she lost her primary care giver, which was her Mom, who passed away on May 31, 2011, from congestive heart failure.
While she was dying, Brenda was dealing with having to wear an air cast on her right foot, because an MRI confirmed that she had some torn tendons. They healed, but somewhere down the road, she may possibly be facing some surgery.
Her Mom told her 2 things. Live your life and grab something if you want it. She has been truly doing both. She spreads awareness and hope with my help on both fronts, living with RA and being a brain tumor survivor. She now has issues with constant nausea and motion issues because of the brain surgery, but she just keeps plugging along. She has managed to hold down a full time job throughout her diagnosis with RA.
I am going to close with one of my quotes. Life is what you make it, you can either choose to be a victim or a victor. Which have you chosen? I know which one Brenda has. She is doing some fantastic work with advocating and bringing awareness. She really wants to inspire and help people. It helps you as well, and really makes you feel better for doing something for others.
She has had some great opportunities coming down the pike. It has taken years, but she is beginning to realize, that you just have to take your blessings where you can get them.
This is Trevor, The Tell Tale Dog, until next time, wishing you peace and love.