I spent time in my “church” today, the great outdoors, where the music is composed of wind and the stained glass windows are rays of sun shining through butterfly wings. After sitting quietly, listening and feeling the music I rose up and began taking pictures of God’s creation, hoping this activity would brighten the darkness that had crept into my spirit. Instead it had the opposite effect as I struggled to keep the camera steady while tremors consumed my entire body, and I realized my neck would no longer turn. It dawned on me that the joy I find in capturing a moment of God’s creation on film would be gone one day soon. Tears poured from my eyes as I wondered how I’d manage to stay strong without this gift of picture-taking. Tears blurred my vision as I looked down to the ground. It was then that I noticed a butterfly in the grass. She was hopping through the blades of grass instead of flying high above the trees, and I wondered why, so I put my finger in front of her and she hopped on as if grateful for the ride. It was then that I realized her wings were mangled. I stared at her ragged body, fading color, and mutilated wings and more tears welled up in my eyes as I whispered to myself, “I’m just like her, a mangled butterfly that will never fly again,” and my soul sank into the deepest of blue. Waves of sorrow overwhelmed me and I wept silently. After a few minutes I looked at my finger and the butterfly was still there, just looking at me. So I looked at her more closely and wondered what great obstacles and dangers she had faced in life. Perhaps birds or torrential rain and high winds that thrashed around those delicate wings? I recalled one of my favorite quotes by Hunter S. Thompson: “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, Wow! What a Ride!” So I pointed my eyes upward, and took a walk with this beautiful butterfly perched on my finger. I searched for a tree that would be just right for her, not too much wind but with a great view of the approaching sunset. She didn’t leave my finger until I showed her the 4th tree. She hopped off and crawled up the branch as the setting sun glimmered through her perfectly, broken wings which lit up like a gorgeous, warm and welcoming flame. I said goodbye to my little friend and knew this would be her last sunset, but it would be a glorious Texas sunset flickering in the evening sky, never to be forgotten.
I believe in good and evil. I seek the good every day. I have no doubt there’s evil in this world, especially within people. I don’t view darkness as a bad thing but instead see it as a completely different animal than evil. I believe in a creator and I believe in love, tolerance, and forgiveness, but I also believe that there are times when we need to be warriors. I believe that whatever life dishes out to each of us, we always have a choice in how we react, and I find great strength in that seemingly simple action. I believe most aspects of life aren’t black and white and the shades of gray can be confusing. I believe God loves and cares for each us, even the darkest of souls. I believe the pain we experience in life can help us grow, define us, and open our eyes to truly appreciate THE GOOD, if we so choose. I believe the little things in life make it grand. I don’t believe God gives a damn if we curse, but instead cares what’s in our hearts. I believe the extremist, religious types are consumed by hate, judgment, and self-righteous loathing, and that more people die in vain over religion, the holocaust, and all the wars combined. Atheist, Christian, Muslim, Jew … I see a connection between us all and it baffles me when others don’t. They only see the differences and they’re missing the great message that was and IS intended to unite us … and that breaks my heart.
I believe “the battle of faith is fought in the mind, not the heart.” (Morris Sheats)
I believe that I encompass a multitude of imperfections that work well together. I believe the older I get the less I know. I believe in making a JOYFUL NOISE.
I was in a bad place a few years ago. I had yet to fully accept what was happening to me. My Bible was on the nightstand covered with dust and bills. I picked it up during a day of excruciating, unrelenting pain. I couldn’t walk due to neuropathy (muscle weakness). I decided to flip to a random page and this passage appeared.
A psalm of David. 1-10
1 O Lord, do not rebuke me in your anger or discipline me in your wrath.
2 Be merciful to me, Lord, for I am faint; O Lord, heal me, for my bones are in agony.
3 My soul is in anguish. How long, O Lord, how long?
4 Turn, O Lord, and deliver me; save me because of your unfailing love.
5 No one remembers you when he is dead. Who praises you from the grave?
6 I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears.
7 My eyes grow weak with sorrow; they fail because of all my foes.
8 Away from me, all you who do evil, for the Lord has heard my weeping.
9 The Lord has heard my cry for mercy; the Lord accepts my prayer.
10 All my enemies will be ashamed and dismayed; they will turn back in sudden disgrace.
I had an early appointment with my PCP this morning. She’s been a very good doc and also has Ankylosing Spondylitis to boot. A very mild case, but still, it’s always good when a doc can relate, and rare too!
She told me that yesterday was crazy busy, and I guess my complicated case set her off. She told me I should schedule separate visits for each issue and that seeing her 1-2 times a year wasn’t enough. I pointed out that I’ve been seeing her at least every 3 months for 5 years and that today was my 6th visit this year. When she realized her reprimand was misdirected towards me she became even more upset and told me I should see her every month because she only has a max of 10 minutes to spend with each patient if she’s going to make any money. I was rather dumbfounded at this point and told her that I couldn’t afford to see her every month, not with the cost of seeing my specialists and paying for 34 prescriptions without insurance.
Despite how I felt inside I remained calm and understanding. I truly sympathize with her predicament. It’s obvious she feels like her hands are tied because of insurance companies, drug manufacturers, etc. I somehow took on the role of psychologist with my doc … or perhaps a pounding board. She told me that the small amount of time she can afford to spend with me isn’t enough and as a result she can’t be a good, thorough doc. She said all of this in a raised, angry voice and walked out, leaving me with the nurse who looked embarrassed because of the outburst. The nurse further explained how bad the previous day had been for them … never looked me in the eyes.
I remained calm and kind through the whole ordeal, and didn’t react in a negative manner. After some silence I said in a raised whisper to the nurse, “What did I do? That was so unprofessional. I’m never coming back. You can note that in my file.”
They forgot to treat my ear, pneumonia shot and medical records release form, and I didn’t remind them. I just paid my bill and left. As soon as I walked out the door tears streamed down my face. It was tough holding them in until I was alone.
Stress is a major trigger for bad health and Dr. S knows this. THIS is the last thing I needed. In my current state of mind I feel like finding a new PCP but I don’t want to make any important decisions when I’m upset. So … I’m thinking I should sleep on this first before making a decision … and I should pray for Dr. S. It also occurred to me that most docs don’t even care enough about their patients to have an outburst, and clearly Dr. S does care.
Any comments, suggestions, and words of wisdom are very welcome.
As many others with ankylosing spondylitis, I’ve become passionate about helping raise awareness. It’s my hope (our hope) that future generations will receive early diagnosis and treatment before permanent damage is done to the body, less pain, and better yet … a cure.
Four years ago my stress levels greatly increased. It was like an avalanche hit me and my family. In the span of a year I was diagnosed with ankylosing spondylitis, psoriatic arthritis, mixed connective tissue disease, neuropathy, ”awake” seizures, osteoporosis (lost 1 1/2” of height), carpal and cubital tunnel, fibromyalgia and vasculitis. Inflammation affected my entire body, including my vascular system. My blood vessels were bursting which greatly frightened me. My immune system attacked everything including my heart, lungs and kidneys. I lost hearing in one of my ears for about a year, but am very happy to say that I’ve regained most of my hearing.
My story begins at a very early age. I was diagnosed with chronic inflammation of the lungs and allergic asthma when I was only 2 years old. I grew up sick, hospitalized a couple times a year, so I knew nothing different. The joint pain started when I was around 16, but I remained silent about it as I had learned to hide my illness as much as possible for the sake of being able to participate in the activities I loved. Over the years the pain steadily increased. I made excuses and put it out of my mind as much as possible. I worked and went to college full time, got my degree in graphic design, and continued to push myself for the future I had planned for my life. I’ve now come to realize that for the most part I lived in the future. Most tasks revolved around a long term goal. That wasn’t much fun and I was riddled with anxiety about whether or not I was on ”schedule” with that plan. People aren’t trains. We each have a different path to take on this journey. Finding that ever-so-difficult balance between past, present and future is a great feat and a task that never ends.
Life forced me to confront many issues, head-on and quickly. What does one do when they’ve spent their life working hard, focused on the future, and then that near future becomes questionable? Live in the present, and draw strength from the past, with a beautiful glimmer of the future. Once I stopped trying to figure out who I was, or was meant to be, I became who I am. By truly releasing the past and the future, a total surrender, I was able to free myself to live in the moment and love fully.
Why can’t life remain like a calm stream instead of a rapidly flowing river? Consider the way a river beautifully sculpts the earth. Smooth is easy but also monotonous and uniform. Curves and grooves are provocative and thrilling, but can also be dangerous. Challenge brings about strength through humility and truth, and by recognizing faults and refining good qualities. Obstacles and pressures break down false pride and reveal who we truly are.
My favorite color is a unique cobalt blue – a beautiful, distinctive, deep, metallic blue that comes from Raku fired pottery. Raku pottery is fired twice and reaches temperatures around 1800°F. It’s able to endure this type of heat because it’s made from a special type of clay found in Japan that’s capable of withstanding ”thermal shock.” I mention Raku firing because I can’t help but compare that special clay to people put through the fire of life. It’s such an incredibly difficult process, but the result can be something truly extraordinary and beautiful.
At times I have a passionate dislike for character building events in life, but I know in the end they turn out to be worthwhile. How tormenting and paradoxical life can be while one matures. I sometimes find myself possessing a negative outlook on life just to prepare myself for the worst outcome possible … but never without a mustard seed of faith that a mountain might actually move beneath my feet. Pessimism is a way to spare one’s self, but not entirely. Faith is the key to survival. It’s the acceptance of what is, but also the knowledge, hope, and appreciation of something better, no matter how small the improvement. Life’s calamity builds strength for future trials, and with each new tragedy comes a renewed peace and spirit equipped for the next turn of the kaleidoscope of life.
Symptoms of Ankylosing Spondylitis and its Many Sister Diseases
I find this topic particularly difficult to write about today as I’ve lost most of my hair and nails in the past few weeks. I typically keep a hopeful, positive attitude and only allow myself the rare pity party. Fifteen minutes to cry and then I pull myself up by the bootstraps, name my blessings, and say a prayer of thanks to my creator.
There are so many symptoms! Where to begin? Some are mild one day and severe the next, but they’re always present at some level. My first symptoms started at age 2 with chronic inflammation of the lungs in addition to allergic asthma. Each time we moved to a new state I was subjected to the scratch and needle allergy tests (which was often), and I experienced severe reactions to every allergen introduced in testing. Next I experienced skin problems such as psoriasis and eczema. Joint pain began around the age of 16. It began with my hands and knees first and escalated to my lower back. Jaw pain was quick to follow. Severe jaw inflammation that left my face swollen and jaw locked … at the most inconvenient times … such as kissing a boy. I jest not, but I can’t help but laugh.
When I was attending college full time and working full time, really pushing myself, the joint pain went up many levels. Countless hours on the computer and using my hands for graphic design and sign language made the pain often feel unbearable. I believed I was entirely too young to have arthritis so I ignored the fact that it ran rampant on my mom’s side of the family while multiple sclerosis was on my dad’s side of the family.
When nerve problems and muscle weakness arose it was the first time I truly became worried. Not long afterwards neck and shoulder pain developed to the point that I could barely hold up my head. I couldn’t even hold the phone up to my ear. On the days that I could function to some degree the tremors were still severe and I joked with my co-workers that it was alcohol withdrawal, and I WAS drinking too much. It was an easy choice of pain killer in the evening before bed. My eyes grew redder by the day and once again I made a joke out of it and stated that I should cut back on the weed, even though I didn’t smoke weed (back then). Bruises appeared all over my body (vasculitis) and I joked that I was simply a klutz and would be just fine if I’d stop running into things. Muscle spasms became so severe that I’d suddenly jerk a cup of coffee all over myself, and I began to have trouble with my words. I once again joked that I must have turrets syndrome. Soon my eyes hemorrhaged causing many “specs” to appear in my eyesight overnight. I found that I couldn’t focus my eyes. My aqua eyes turned to black saucers for nearly 2 weeks, dilated on their own because of muscle weakness. Cognitive function became a definite problem. It was at this point that my doc sent me to a neurologist who ordered three different MRI’s, 4 nerve conduction velocity tests (NCV), and 2 needle electromyography tests. I call them shock and needle tests, and they freakin’ hurt. This was the beginning of many diagnoses including heart disease and hearing loss from mixed connective tissue disease. I was left in a state of disbelief. All of this occurred concurrently with my dad’s diagnosis of cancer and my mom’s relapse into severe mental illness … easily the most difficult year of my life. Stress was a huge trigger factor along with 2 spider bites and 4 wasp stings within the time period of a couple of months.
Five years later I’m still alive and kicking. I could go on and on about the seemingly countless symptoms, but I won’t. It brings me down to think about them, and I believe in the power of the mind and spirit, so I’ll end with the one symptom that I believe is the most important sign. Extreme fatigue. There are many causes of excessive fatigue and none of them should be ignored. It’s your body giving you a loud and clear signal that something is very wrong. One of the many things I’ve learned over the past few years …
LISTEN TO YOUR BODY.
I had an incredible dream early this morning. It was about fear. My dreams are typically interesting, vivid and in color. On a rare occasion I experience dreams I know will be remembered for the rest of my life. This was one of those dreams.
This particular dream began in black and white and with a great sense of urgency…
For an unknown reason I was forced to leave a dear friend. I promised her that I’d return, but she was paralyzed with fear that I’d never come back to her.
After some time, years, I finally returned as promised. I arrived at her home, knocked on the door repeatedly, but there was no answer, only an eerie silence that told me something was terribly wrong. I was overcome with a sense of urgency that my friend was in immense danger and decided to break in to her home. I searched the house, checking every room for her but she was nowhere to be found. I became overwhelmed with the feeling that I had returned too late and she was gone forever. As hope dwindled and despair entered my heart, the gravity of sorrow pulled my head down towards the ground, and it was then that I noticed a small, closed-door out of the corner of my eye. It was locked but I managed to beat down that door too. When I opened the door I found her slumped over in the corner of the room with her face against the wall. I looked around and was horrified and angry to find that the room was infested with fear. The walls were like catacombs and porous. Fear had embedded itself into the walls. Each cavity contained an amoebic shaped being with a haunted face that moaned and wailed. It had become part of the walls it lived in and was feeding off my friend like a parasite. I grabbed my emaciated friend in one arm and wretched every parasitic being out of its cell with my other hand. It took all the strength I had to eradicate fear! I carried my friend out of the room, out of the house, and into the light. Black and white turned to color and then I awoke.
I believe this dream is very symbolic. So often we let fear hinder our lives. I know all too well as I guarded my heart for years with a wall made of humor and smart ass comments. Fear can detour and devour our lives if we let it. Fear of being hurt … fear of hurting someone else … fear of death … fear of failure … fear of the unknown … fear of the power that’s within each of us. Yes, I realize the friend that I saved is me.
The image included with this blog is my illustration of the parasitic fear from this dream.