I decided to undertake this challenge to try to educate the public on what it is like living with an invisible illness like lupus, or other chronic illness. It is my effort to educate the public, family members and friends about lupus.
An Invitation
The 30 Day Chronic Illness Challenge was created by @cfs_zombie. I learned about it when I was doing some research on different challenges that people with chronic illness faced. With Lupus Awareness Month approaching, I felt that this challenge would be an appropriate one to help raise awareness for lupus and chronic illness, in general.
Each day, there is a brand new writing prompt. All topics focus on chronic illness and/or what it is like to live with a chronic illness.
Some people did blog posts. I chose to do a video each day.
Each day a new video will be posted, detailing the prompt of that day.
I trust that you will follow, and help me to raise awareness of lupus, and the other chronic illnesses that I live with.
Image Credit: @cfs_zombie
May is Lupus Awareness Month. Will you join me on this challenge?
Prior to that you can also read a little about me and why I am choosing to do this challe
This story documents a little of my life after lupus. Some images may be disturbing. I have made myself very vulnerable in this video, but I appreciate your comments at the end.
We spend so much time trying to dodge the bullet, when our energies should really be spent on what happens when we get hit by the bullet. What happens when we lose that job, or when our relationship ends, or when we get diagnosed with a chronic illness? I spent years taking care of my body...eating the right foods, exercising...but it rebelled, and I have been on the ride of my life ever since. How do you get back up from events like these? How do we use those events to propel us forward?
There are several narratives that describe my life, but never thought that chronic illness would be one of the stories that would play out in mine. Sometimes I think back to my life before illness, and long for those days when I could run 3 miles without struggling to breathe, back to the days of my martial arts training, back to the days when I could run around and play with my children without having to pause constantly to take a breath.
This story will document a little of my life after lupus. Some images may be disturbing. I have made myself very vulnerable in this video, but I appreciate your comments at the end.
Thank you for allowing me to share my story with you.
May is Lupus Awareness Month. Thank you for sharing, also, to help me raise awareness about this horrible disease.
Artists have known for years that art making is therapeutic. The process of mixing colors and applying layers of paint to a surface is so soothing, and I believe that we can all benefit from the healing aspects of painting regardless of our artistic ability. The following videos are chronicles of my 101 days of creativity.
Jacques Maritain once said that "We love persons......by reasons of their defects as well as of their qualities," but is that really true?
Here are a few thoughts on friendships and being chronically ill.
Chronic illness throws a monkey wrench into our relationships. That's a fact!
When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain and illness is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need. Hmmmmmm.
There is a freedom in loving and being loved. The love we have for other special people frees us to concentrate on them, and if possible forget ourselves and our problems.
In being loved we discover the same freedom. We don't have to conceal our defects. We can be open. Yes, we can, and should continue to work on our "defects" but we do it for us, not so that we can "deserve" love.
BUT when those "defects" result from a chronic illness, sometimes we feel that we have to almost prove that we deserve the love being shown, or what we ask for.
It was a painful process of losing people for me. The more ill I become, the more friends I lost. I've even purposely ended relationships with some because of toxicity. Part of this is a result of the people in my life not being the greatest people to have as friends, and part of this is a direct result of me making positive changes: getting sick allowed me to see my world with a new perspective.
My life is no longer about petty concerns and trivial bullshit. Now, it’s about creating a calm, positive, healthy environment and keeping my stress to a minimum. It’s about creating as happy a lifestyle I can for myself in spite of immense suffering.
There are a few friends who have stuck by my side. You know who you are! Some of you are overseas, and we don't speak that often, but our friendships have stood the test of time and chronic illness. I know who I can call and whine to. I know who to call to have a good laugh! I know who will provide a shoulder to cry on.
I know I'm not the only one who has ever felt the angst of loss of friendships.....for whatever reason.
Remember to cherish the few that hang around. Cherish the people that stop by to hang out on the couch with you, the people that still invite you out even though more often than not you’ll decline their invitation. If you have no one, hang onto hope that others are out there. It is possible to have meaningful friendships despite chronic illness.
It takes a very special person to stick around and be a real friend to someone like us (though it shouldn’t be this way). They exist, so hang onto hope and in the mean time, cultivate a healthy relationship with yourself.
I treasure all the loving friendships I have.
Love you, all!
Tip for living well with chronic illness (see video)
Life provides us with many opportunities to fail and fall down, whether you have a chronic illness or not.
What makes one person persistent while another gives up? There are days when people see me around town and will say something to me like, "Wow, you look really good today. You must be feeling good." How I look on the outside does not always reflect how I am feeling on the inside. That is the beauty of an invisible illness. However, I try to be persistent in how and what I show the world.
I know that I can make myself feel better than my body is telling me simply by trying to look good.
Can persistence be strengthened like any other muscle? Science says yes. Persistence, often referred to as “perseverance” is what makes science out of hunches and finished artwork out of imperfect attempts.
This past few weeks I have given myself a challenge to create 101 pieces of art or sketches or drawings over 101 days, which end on April 15th. I have been able to live up to the challenge,
and look forward to the end. After that I have some serious plans for the artwork....more goals.
You can some of the completed work here:
Days 1-25
Days 26-50
Days 51-75
"In a society that holds productivity as unequivocally good, to do less feels like a moral failing."
People who persist are much more likely to achieve their goals, which increases self-esteem and personal pride, making it easier to overcome more difficult future obstacles and set new goals.
The last week has been really difficult. First there was a serious bout of bronchitis, discovered after being rushed to the hospital. Two days later I discover that my dear friend is on the verge of losing the love of her life after a routine stress test that took a turn for the worst. Now he is brain dead and she is facing a life without her best friend.
Emotionally it has been a rollercoaster. There were days when I did not want to get out of bed, but I had to persevere. As I am writing this, the temperature outside this morning is below 60, Central Florida. My joints ache, and I was very tempted to not do anything creative. I have been looking at some plants in my yard that I think will look great in a hanging basket, so I will go out later when it's warmer. After that I will take a long shower and wash my hair. That is probably all I will be able to do today, but it will be a lot.
Living with a chronic condition is like carrying around a giant weight on your shoulders on daily basis. Furthermore, regardless of the type of condition you have, you will have to slow down and make lifestyle changes in order to carry that weight around. The problem with living with a chronic condition is that you find yourself traveling through a complicated maze where there are more questions than answers and finding your way requires patience, dedication and endurance.
If you have certain goals that you want to accomplish, you may need to write down your goals and put them somewhere that you’ll see them every day. The research also suggests that if you take your big goal – to write a book, to lose weight, or to get a college degree – and break it down into smaller bites or steps, such as: “write once a day, run one mile every other day, and look for local colleges” your chances of achieving the goal increase. However, humans are known to seek pleasure and connection. If your goal doesn’t promise to fulfill you, your chances of achieving it are slimmer.
I know a thing or two about persistence, and I add an element from my own personal experience: always build a support network of champions and hand-holders.
Choose people who will remind you that your goals are worthwhile, and talk you down off your emotional ledge when they don’t go your way.
I set goals for myself everyday, even if it is just something as simple as taking a bath soak. Self care is important, after all. When I am struggling even to just take a bath, I have friends that I can call to vent to, and to just get some encouragement.
When I can't finish writing that article in one sitting, I write a chunk here and there throughout the day until it's done. My initial goal was to write an article a week, but I realized that that was too much, especially when I also wanted to create some new paintings throughout the month. Sometimes, I do have to scale back, as long as you do not give up.
To put yourself on the road to persistence, pick goals that tickle your passions, break them down into their most manageable pieces, and be flexible in your pursuit of them. Success may be just one more attempt away.
Also, here are a few other tips for being persistent: • Stop being overly-critical of yourself. You cannot control what has happened nor can you turn back time. • Trying to control things you cannot control. Control what you can: your feelings and your emotions, your lifestyle, and your healthcare options. • Stop being emotionless. Humor and gratitude go a long way. These things play an important role in the healing process and not having them will only pull you down. • Take time for yourself. Self care is critical, essential. You come first and not putting yourself first will only make you miserable.
• Take responsibility for your healthcare. Be your own advocate because no one else is going to do this for you. Find out all you can about your condition including treatments and the latest research.
• Stop isolating yourself. Find support and form a support system.
You are not alone!
Original art by Gina Welds Hulse
• Keep looking to the future no matter what. Think about the things and the people that matter to you and keep looking up.
I will life mine eyes to the hills, from whence cometh my help! Psalm 121:1
(Original art by Gina Welds Hulse)
The last few days have been really tough. Just a few nights ago ago I was rushed to the hospital with difficulty breathing. I had been experiencing coughing throughout the day, but by 1:30 the next morning, I was having trouble breathing even after two breathing treatments. My lungs felt like they were just spazzing inside of my chest.
After a tough call to call an ambulance, and checking my blood pressure and heart rate which by now was at 137 resting I was taken.
Long story, short, I was diagnosed with bronchitis, and sent home with a few prescriptions.
A few days have passed and I am feeling better, when I receive a tough text from a dear girlfriend. She had taken her husband to the cardiologist for a stress test, which went horribly wrong after 3 seizures, and a mini stroke.
He is now in a medically-induced coma. She is extremely stressed out, having a chronic illness herself, and I feel for her.
I had just about had enough! On top of my many usual health problems, I had the awful experience of feeling this immense pain that my dear friend is going through. I cannot imagine being in her shoes. It was ironic, as this morning I started to go through my memories on Facebook. You know....everyone gets them each day, and you can look back on several years based on what you had posted. Well this morning one of my posts reminded me of a favorite hymn: Turn your eyes on Jesus. The chorus goes like this:
Turn your eyes upon Jesus. Look full in His wonderful face; and the things of the earth will grow strangely dim, in the light of His glory and grace.
Sometimes when you are going through a difficult time, it is hard to keep the focus on Jesus. This song is a gentle reminder to turn your eyes on Jesus, especially when going through difficult times. Those troubles will seem to fade when we blanket ourselves in His peace.
I can honestly say that if I didn’t keep my eyes on Jesus during my illness I would have become so down. I can honestly say that If I did not reach out to others in this time of need for my friend, it would have been tougher for both of us. We have been surrounded by prayer warriors, who have fed us spiritually, allowing us to grow and keep our minds off the pain, off the uncertainty, and to focus on the recovery and miracles that await us.
