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Fibromyalgia This: Diary Of A Pain Warrior

Simply.Mindful.Natural.Joyous.

Dancing With The Blocks Of Concrete On My Feet

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Fibrome

It’s been a while since I visited my thoughts and feelings. I swept them away from my consciousness eagerly, falling into the comfort of self medicating with emotional numbness. A milestone birthday at the beginning of the year brought trauma and fear for the next several months. One potential diagnosis of Leukemia, seemingly endless tests and re-tests, multiple and debilitating symptoms of severe anemia, all slowed me down.

Then, a depression visited. No, I am not being honest. It moved in, bringing all of its  suitcases and furniture along, setting up a cozy life within my soul. This depression was so sticky and deep that it swallowed my entire spiritual cavity and trapped it there, at the bottom of the anguish and desperation. And I sat there, enveloped in the molasses of not caring, as the fear slowly seeped into me, crushing my chest and  making it impossible to breathe.

This beast of my sadness is still here, only it’s slowing down and loosening its hold. Not as powerful as she was even a week ago. The results are in, and death is no longer tangible and real. Slowly, my body is opening and stretching, trying to shake off the debilitating effects of stress and trauma. The journey back to myself will be a longer one this time. I am taking a slow walk, barefoot and hope that by the time I arrive my injuries will become only scarred reminders of a fight I won, and walked away a victor and a human.

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Reaching For A Cup of Coffee: Wait,The Olympics Are Back?

http://m.weheartit.com/entry/23832422What is one Fibro warrior to do on a rainy day, when the unstable pressure outside creates a flare-up filled day? Well, make a list of things that scare her the most is a possibility. Or, how about a list of annoying details of a Fibro-Flare? Since I can’t decide at this moment (the inability to make a decision is proportionate to the amount of pain that generously washes through me;) I will present to you the list of  Random and Mundane Fibro Flare-ups, one item at the time.

Reaching For A Cup of Coffee: Wait,The Olympics Are Back?

I went to bed last night at 7:30 pm. On a Saturday. A weekend when I am not working. And guess what? I woke up at midnight…at 2 am…at 4am…At 5am I finally gave up on pretending to sleep. What a joyous event that is, waking up exhausted and in pain, contorting my pained body in futile attempts to untangle from the sheets that draped around me as if they were sewn just like so. I began my preparations for the pain Olympics as I furled upright only to lose my balance and almost land face down on the floor. However, being a seasoned pain athlete, I successfully prevented a broken nose by balancing my weight on one arm..a one armed plank pose!

As I blindly walked to my coffee maker I realized that the shuffling of my feet (heel-spurs are good that way) resembled the circular motion of Olympic-style Curling, an interesting new addition to the “Real” Olympics. Focus Ana, focus is what the pain whispered in my ears as it laughed, and laughed and laughed….

I poured the coffee, ensuring that I choose the lightest mug for my weight lifting session.My first attempt to bring the mug to my eagerly awaiting lips failed miserably. My muscles, too fatigued by the pain and my plank experiments, decided to rebel and do absolutely NOTHING! The second try was more successful, my arm twitching and shaking the mug so hard I felt as if I were in an apple bobbing contest, trying to score that one crucial bite. I finally took a sloppy, first sip of my morning coffee. IMG_8849

Gloriously strong and unsweetened, the forbidden black nectar of brief energy and life never tasted better. Actually, it tastes amazingly decadent every time, mainly because each first sip is accompanied by the image of  my rheumatologist shaking his index finger feverishly as he outlines my “necessary lifestyle changes.” You guessed it, coffee needs to be replaced by green tea because of the antioxidants blah-blah-blah-blah.

I am not negating the powerful health impact that drinking green tea might have on one’s health. There is a plenty of research that shows all the wonderful and positive effects and I am so not stupid to ignore them. However, waking up as if I haven’t slept in days, despite nine plus hours of sleep, I need something much stronger that a cup of green tea to jolt me into life. A caffeine packed life line perhaps? Why yes, yes indeed!

Besides, this is the same doctor who sugested that I “take frequent naps, up to three or four, and many hot showers (five or so) DAILY!” Really? How exactly am I to do this when I am working full-time? Oh, yes. He also stated that I should reduce the amount of hours I work. Being the breadwinner in my household, this proposed change of my lifestyle would be amazing. I could nap between packing away my belongings because we were evicted from our house due to the lack of mortgage payments. No thank you! I will keep my employment, continue to shuffle in pain as I reach for that beautiful caffeinated  sludge and begin my biceps workout. The Pain Athlete’s workout is neverending.

Chronic Pain In Workplace: Lessons In Leadership

found on psych.central.com
uploaded from pinterest

Holding a full-time job, in a highly stressful capacity is a big challenge for  anyone, especially for those of us with Chronic Illness. Many of us consistently outperform and outwork the “healthy” workers, either because the unyielding drive for results and perfection is our dominant personality trait, or we feel that we have to prove that we are still in control of our bodies and actions. Or is it that we outperform as a way of compensating for the days when we are imprisoned by our failing bodies and are unable to walk due to pain? Perhaps it is the feeling of guilt when we have to step away from our work team due to an especially bad flare that leads us to work harder, setting the pain aside for the sake of accountability in our work place.

Regardless of the reasons behind our overdrive, despite the daily mobility difficulties, the days when we cannot walk and work leave traces of guilt and shame. That is why it is crucial  to create a supportive team. One whose understanding of the Chronic Illness is probably superficial at best, but  whose acknowledgment of a strong work performance in face of  health challenges and disability cultivate mutual respect and a healthy work relationship.

Of course, much of this is dependent upon a boss with true leadership skills, and the amount of integrity and honesty we bring to the conversations. Throughout my career I have always worked  in a leadership capacity. Once I was diagnosed with my cluster of Chronic Illness(es) I worked myself  hard without compassion, in hopes of  proving to myself and others that I am still of value. Through my journey I have not been open and outspoken about my Illness, hoping it will just go away. Not having any compassion toward myself, made it very difficult for me to show any vulnerability to others. And I struggled tremendously, with my illness, with my work and with my relationships.http://www.wookmark.com/image/154767/til-the-end-of-days-by-javier-de-la-torre

However, as I became more honest and reflective I began to change. Three years ago, I was recruited for my new job in a more demanding leadership role, more of a hectic and fast paced environment, being a boss to triple the amount of people I supervised and trained. I was lucky to begin to collaborate with a leader whose compassion brought the best in his people. We had an honest conversation and I acknowledged the pain and mobility issues as they came up and he met  my needs appropriately. It was this  trusting and respectful relationship that helped me move away from the feelings of shame on the days when “I can’t walk” became clear.

I still work hard. This is the only way I know how to be in a work place. I work through pain and fatigue. I work longer when my  team needs support, and I step in when my teammates need a helping hand. But I am also allowing my team to learn the complex nature of Chronic Pain and illness. I am not hiding the days when my skin hurts as the wind touches it gently. “No friendly taps on a shoulder or a hand please!” Nor do I hide the days when I cannot walk due to flare up pain. I don’t miss work very often, but when I do make that choice I do not feel shame any longer. In my honesty I have gained self-respect. Cultivating a  trusting relationship with my work family helped me learn compassion, not just for myself but for those who work for me as well. Being honest about my illness made me a better manager and my boss’s understanding and compassion made me a stronger leader.

Soup For Breakfast: Fibro-Ease The Flare-Up Days

11154952_10206257071976752_9026318880461658848_oSoup for breakfast?Why not? Yesterday was a flare-up from hell day so I reached into my trusted bag of Fibro- ease tips to make the day as smooth as possible. Cooking is not on my list of activities to enjoy during the flare-ups and reaching for a bagel or a quick sandwich  is not an option due to my dietary restrictions. To make sure that my nutritional needs are met and that my body is properly nourished while in excruciating pain, I usually make a large pot of soup.

Fibro-easy tip#1 I always have homemade broth (you can find my trusted recipe here) cut-up skinless chicken breasts (cooked and sliced,) broccoli,leak and peas in my freezer. Pssst….here is a big, huge cooking secret….Any broth and soup (including seafood) tastes better and is graced with a more complex depth of flavor when you cook with leaks instead of onions.

Fibro-easy tip#2 Carrots, mushrooms,parsley,cilantro and lemons  are a must in my kitchen. On my good days I will cut up, chop up, slice up fresh veggies and copious amounts of carrots and onions since I use them as a base for almost everything. I’ve learned to do a lot of food prep when I am feeling better and have more energy, in order to make my flare-up days less stressful.

Fibro-easy tip#3 A very light cooking pot is what I sought out and purchased, specifically for the days where I do not have energy to move my arms very much. I use this pot for everything, from stews and soups to boiling eggs.

Now, the fibro-flare soup is easy and quick to assemble. First, pour defrosted broth into a pot and bring to a boil. Add carrots and let them cook a bit before adding the frozen veggies and fresh mushrooms. Sliced chicken and freshly chopped garlic and parsley go in at the end.  You may leave it as is, or add rice or noodles at this point, or you may follow my lead and pour in  one lightly beaten egg into the soup continuously stirring to break it up into smaller pieces.Pepper and salt to taste and I looove to squeeze fresh lemon when serving.The acid brings out the flavors nicely and is very healthy. And that is all. Very easy, nutritious and honestly tasty. I hope that soup for breakfast sustains you through the days when the pain and fatigue is almost intolerable, and you are more likely to make poor nutritional decisions.

Bicycle Me To Freedom

IMG_1046Do you remember your last time on the bicycle, pushing your body to work a bit harder, enjoying the freedom to explore the space on your own terms? Yup, me neither!

Last night I was a guest on a radio show that focuses on a Holistic approach to well-being and healing. Speaking with two avid bicyclists, the ideas of freedom and  cycling were tossed around casually within the larger context of physical activity and overall health. The host and a guest passed the freedom concept quickly, continuing their passionate discussion. I, on the other hand, began my internal explorations of  the ways i which the chronically ill body restricts the movement and how this alters the mind.

I cannot just decide to hop on a bike and ride anytime, anywhere. First, there is the check of “How much energy do I THINK I have today?” This is not a question of how I am feeling at the given moment, but it is a necessary estimation of a very limited, finite pool of energy.  “Do I think that I will not exhaust all the energy in getting dressed, readying my bike and riding in one direction, so that I will not have any left to come back and  attend to other necessities such as cooking my food, undressing and changing my clothes, taking a shower etc.”

Next is the actual act of getting ready and assessing if my initial “energy level estimate” is accurate or do I need to make significant adjustments to ensure that I am not overreaching and getting myself into a potentially dangerous situation.

Once this first round of check-ups are done, I need to asses and project my pain level. How stiff and pained is my body? Where is the pain located? Is it the overall muscle pain, or is the pain concentrated in my joints? How is my skin feeling as the  air brushes across its surface? Is it just a tingling without a possibility of turning  into a sensation of thousands of razor cuts, or is it feeling as if my skin is being pulled off my body?

Finally, how irritated is my gut today? Am I painfully bloated as a result of eating something that triggered an autoimmune inflammation? Do I require frequent bathroom visits resulting from the general discomfort associated with the IBS?

Check one, two,three and four and I might be ready to hop on the bike and ride. The number of times I am able to say YES to a bike ride, a walk or a social event  is overwhelmingly outnumbered by the amount of times I have to say NO. Being controlled by the demands of my physical body takes away the freedom of movement and creates  a sense of imprisonment which ultimately changes my understanding of self  as defined within the terms of a confinement. I am a prisoner  allowing my body to be  the warden.Copyright Ana Turck 2012

The conversations last night helped flush out the mind-body connections and the ways in which chronic illness creates a seemingly never ending cycle of control,and  I am optimistic about the possibility of breaking the pattern in my recovery. The acceptance of my limitations was a long journey, nine years in making, and a first step. Even though  I still encounter the days where my frustrations reach the emotionally breaking point, I am ready for the next part, the one where I succeed to break the cycle and free myself. Not sure how I am going to approach this  task, but I will make sure to share the new path with all who are willing to listen. And while waiting I am going to read my little piece about the last time I was able to get on my bicycle and explore this beautiful world .

Fibro Birthday: Heal Me Ginger Tea

I have a habit of loosing my Birthdays.  Yup. It is true. I misplace them, along with my keys and my laughter, only to find them in odd, rarely frequented crevices of my heart. Filled with pain, my Birthdays mostly offer an endless stream of disapointments which contributes to the ease of forgetting. This pattern of avoidance could continue well into my Birthday today, but I choose to stop and self-reflect. And to ensure that I do not misplace this 39th  birthday, I will make a pot of my ginger tea, laced with a whisper  of cinamon. Ginger is to reduce the pain, cinammon to improve my memory, and tea…well  that is just a pure joy. Good Morning and Happy Birthday!10866233_10205639282052390_3240138383851305401_o

 

FIBRO FRIENDLY TEA

TO GET

2 1/2 inch ginger root

1 qt water

a dash cinnamon

1 teaspoon of honey

 

TO MAKE

Slice the ginger and add to the water; Add a dash of cinnamon (a litlle goes a long way;) Bring to a boil and  then simmer for 3-5 minutes.

Strain; Add honey; Mix well and smell before you taste. HEAVEN!!!!

Chicken Broth, Pajamas And A New Begining

20131216_110429Three days in my pajamas and I feel more tired than ever. My back gave out, a flu created a permanent residence in my joints and my brain keeps the thoughts of guilt and shame on the infinite loop. Last year was a tough one, the near possibility of loosing my love to a heart failure and the subsequent months spent in a role of a care giver kept me bussy and exhausted. Next Year will be better, I kept telling myself, trying to find some hope that would help sustain me and allow my body to move forward.

Blind to anything but the tasks that needed to be done,I fought through the darkness and depression, knowing that the pace of our journey is not sustainable. The New Year began with another,more tangible loss. Our kitten Jinxy passed away suddenly, leaving the void and heaviness of blame to etch its presence daily.Stuck in a circle of fear, sorrow, self-doubt and physical exhaustion I greeted a Flu and helped turn its stay into a two-week long vacation.

The last three days off work were a luxury, a gift which I eagerly anticipated. My grandiose plans of cleaning, setting up my yoga routine and hitting a re-start button on the New Year crashed in the face of a terrible back pain and inability to walk. First day of being almost immobilized on the couch I felt a bit restless but grateful that I get to spend a very cold day inside, cozy and not rushed. Second day of exhaustion I greeted with guilt that intensified as the day progressed. Trying to forget the pain and the anxiety brought on by “not doing anything productive” I turned to food, ingesting massive amounts in a very short time and making myself ill. The night spent alternating between sleeping on the floor to ease the back pain and getting up awkwardly to throw up left me drained and miserable.

Today is the third day of my “pajama rotation” routine, where all I seem to be able to accomplish is change pajamas and take a shower. Well, almost. Whenever my body gives up on me and I find myself barely able to function, I put a pot of chicken broth on the stove to cook for several hours.The comforting aromas of vegetables, spices and herbs make me feel as if I am being productive, an active paticipant in my body’s recovery. This broth heals me, calms my stomach and gives me energy.Perhaps, by the end of today, as I pour a generous coup of freshly made broth, I will forgive my body for its inability to absorb stress and myself for turning the three days into an extended pajama vacation. May the New Fibro Year begin!  20150110_100433

Here is my Chicken Broth Recipe:

In a stock pot combine either bones of a whole chicken or a legg quater (skin on)…I roast a whole chicken once a week and save the bones and unwanted meat in a freezeer bag to use for a chicken broth (money saving tip#1;)

Any root vegetables you might have but onions, cellery and carrots are a must (tip#2: I collect the left over pieces of onions, carrots, parsnips, leek,fennel, cellery, garlic and keep in the freezer for broth and stock;)

Peppercorns (a bit in your palm goes a long way;)

2-3 dried Bay leaves;

1/2 teaspoon of raw apple cider vinegar (vinegar helps draw minerals out of the bones;)

A bit of salt.

Cover with water and bring to a boil (I boil it for 1/2 hour.) Turn it to low heat and simmer for 6-8 hours. As it simmers periodically remove the white foam (if any) with a spoon. Once it’s done, let it cool and strain the liquid into mason jars to store in the fridge for weekly use. I often make a very large pot so I pour the liquid in a large muffin pan, let it freeze. After it freezes, pull the pan out, remove little muffin shaped pieces of broth and store in a freezer bag. This way, they are ready for individual use. I love sipping my broth in a mug with a bit of freshly cracked pepper and squeezed lemon or some raw apple cider.

Fibro This: Rebirth In Pen

Copyright Ana Turck 2012I cried last night. Frustrated, barely able to walk or think I broke down and allowed myself to acknowledge the feelings of hopelessness and desperation, two persistent companions to chronic pain. This Winter has been very unkind to me and my body. January brought first the  flu and then a cold, both of which combined into a seemingly never-ending tale of bodily discomfort and exhaustion.

Then, February came armed with the “Mother” flare-up, the most vicious of any that I have known in my past. The fatigue was there and so was the pain, nothing that  I haven’t dealt with daily. However, the “Mother” brought a special weapon with her, one that is certain to give a lethal blow to all pain warriors. A weapon so mighty in its scope and power that it rightfully earned its legendary status. Just a thought of it is enough to stop even the most experienced of us Fibro Warriors for a moment, filling us with unease and fear.

Yes, the “Mother” unleashed her  full arsenal of cognitive and brain disturbances. The Brain Fog gave a way to a partial loss of memory and a complete inability to focus, leaving me to try to cope with checklists and extended  times for completion of tasks and projects. “I got this down,” I assured myself thinking that all that I have learned before will be enough to win this battle. After all, I’ve been a hardened veteran, fighting the pain for 18 years and winning every battle thus far. “I got this!”

Full of hubris I entered the battle only to quickly learn that somehow the rules have changed and I was completely lost. My speech became slurred, I could not recall proper grammar in neither of languages that I speak, and often I could not finish meaningful sentences. Unable to focus I briefly lost my ability to read. All I could do was to stare at the page while the words sounded off the meanings that disappeared as quickly as they formed. For several days I lost the use of my hands and my balance was slightly altered. I tripped and fell more times in the last month or so then I ever did in almost two decades.

I panicked. Somehow, as long as my mind was sharp and  I could write  the constant pain seemed possible to beat. I had my self and my mind had the power to alter the thoughts and definitions of pain and depression, creating and altering paths and roads to positive thinking, making the recovery real and tangible. But once I could not flush out my thoughts, periodically losing the ability to communicate I felt my soul disintegrating. I was not “I,” and fear and panic overtook my body and mind.

The “Mother” was winning, or so it seemed. Imbued with pain, I came home from work last night on a verge of tears. I slowly took my clothes off not able to bear the excruciating pain that cloth created as it came in contact with my skin. Nauseous and shaking as the waves of pain came through me, I laid in my bed uncomfortably feeling the metallic taste of fear in my mouth. Taking deep breaths I tried to calm myself down, and unable to get away from my condition I began to cry. Silently, wordlessly I let the tears wash my burning skin. Exhausted I was  about to lose this battle. I cried myself to sleep hoping that all, including me, will disappear forever. I was done.Copyright Ana Turck 2011

Awakened by the sounds of an impatient cat asking for food and a hushed voice of my husband , I slowly moved first my arms, then my legs, engaging in a Fibro ritual that allows me to asses my pain quickly. Yup, the pain was still there. I rubbed my eyes feeling the tightness of my skin along the paths od tears that have dried overnight. Somehow, the glossy rivulets felt comforting, grounding me. I took a deep breath as I slowly lifted my body from the sheets and sat on the edge of the bed. My mind seemed clear, alert and ready to write. The smell of freshly brewed coffee drifted to my nostrils, enticing me to grab my silk robe and shuffle into the kitchen. I filled my cup with the strong, thickly brewed liquid, added some cream and inhaled deeply as I brought the first sip to my mouth. I closed my eyes and decided that I will win this battle just as I won the countless ones before.

I sat at my desk filled with a somewhat uneasy anticipation. What if I can’t write? Shaking off the feelings of last night, I pressed my fingertips against the keyboard and let my soul speak. The “Mother” gave me a gift. She allowed me to recognize the fierce strength of my disease and to renew my respect for the opponent and myself alike. Even though the weapon she unleashed on me is strong, it is not as powerful as my ability to reconnect with who I am through writing. As long as I recognize myself,  Fibro will always lose.

 

Demands Of A Pain Warrior

Copyright Ana Turck 2012Let me confess that I am tired. Exhausted by the constant cycling through depression and pain, teased by short periods of hopefulness and joy, I find peace and acceptance unattainable. It is true that during those few sweet moments, when the pain seems uninterested in making a point, life brings the echoes of a laughter and hope. Beautiful feelings  of content , no matter how brief and shy  they are, fill my soul with tears and sadness in anticipation of darker days that are sure to appear soon.

It is this anxious dynamic that makes pain destructive. It is not just the inability to move, to brush ones teeth, to dance or to hug. No. The destructive nature of pain is in its power to make living in a moment emotionally impossible. Without the ability to stay present and recognize that which is good and positive, all that is left is a prairie of sorrow, so deep that it blankets any sign of hope and peace.

However, despite being weighed down by the burden of pain, I still continue to try willing my brain into recognition of life as more than a mere three-dimensional representation of events and feelings. I continue to challenge myself and my illness to give my life meaning rooted in purpose and calm. Just as I accept my body’s limitations,  I expect more of my soul. I demand a better life, one in which I laugh without a feeling of guilt, one in which I look into  days to come with a sense of excitement and wonder. I demand a life filled with light and hope because that is the one that is possible and the only one worth living. I demand a full life, and so should you!Copyright Ana Turck 2011

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