It is December and another year is almost over. While this is the time to come together and celebrate, I know it can be a difficult time for those of us struggling with pain. There were moments during my own journey when I would feel a deep loss or void around the holidays. I would watch my family and friends enjoy the festivities and think I did not belong. In a way, I felt like a traitor. As I saw true joy and happiness in those around me, I tried to play the part. I would have a smile on my face, as I tried to hide the fact that I was falling apart.
Do not get me wrong, I love the holidays and being with those that bring light and laughter to my life. However, attending these parties and get-togethers seemed to evoke emotions I spent the year ignoring or burying. Suddenly, my mind would be bombarded with self-deprecating thoughts that I was not good enough, I was still sick, or I failed. I just did not know how to cope with the realization that another year was passing, and I was no closer to finding answers or relief. There was just an overall aching pit in my heart.
I share this with you not for sympathy, but rather because I do not want anyone else to feel alone or ashamed. Along my self-discovery and healing path, I have learned many lessons. I now understand that those experiences and emotions were normal. For too long, I tried to hold it together. I thought expressing feelings would make me weak, crazy or pitiful; it is only now that I see how important it is to release these thoughts.
By working through my emotions, I uncovered newfound strength, resilience and courage. I finally saw my worth, and realized my life had purpose despite the pain. Dealing with these blocked beliefs allowed me to move forward. I was able to continue to look for answers, dream of recovery, and still live in the present. I understood that my life changed, but it did not end as I originally thought.
My wish for all of you is to recognize your inner-worth, and embrace the positive moments in each day. We all are making a difference in this world … and I personally thank you for making a difference in mine. Each of you inspires me, and I feel blessed to be part of this incredible group of survivors.
Remember to continue holding onto hope and believing in the unimaginable. We are in this together; and together, we are going to heal. I am thinking of you and sending healing wishes. Happy Holidays!
Believing in Miracles,
INVISIBLE PROJECT ~ Edania Maldonado
Please take the time to read Edania’s story and pass on to others! She is a remarkable young woman. In addition, continue to check Healing Times Newsletter and the INvisible Project website as each month a different INvisible story will be featured.
At eighteen, Edania Maldonado is young, compassionate and full of life. A freshman at LaSalle University, she dreams of becoming a pediatric physical therapist. Edania may appear to be a healthy teenager, but for the past six years, she has been living with chronic pain.
During the summer of 2004, Edania injured her right forearm when she fell off a tire swing. Because she was twelve, doctors placed her arm in a soft cast, believing it would heal on its own. While the pain did not fully go away, she gradually regained mobility of her arm after two months and began to return to her normal activities. Unfortunately, when she returned to one of her favorite pastimes, gymnastics, a friend doing cartwheels accidentally kicked Edania’s arm, causing the pain to return immediately.
Things only got worse. Several weeks later, the burning, throbbing sensation spread when she tripped over a suitcase and fell on her left elbow and shoulder. Soon she was wearing a soft cast on her right arm and a sling on her left arm as the pain traveled to her neck. Over the next two years, Edania continued to struggle with severe pain and no answers. During this time, she injured her left leg while dancing for her school’s talent show auditions. Since this injury, her left leg turns permanently inward.
Edania’s doctors seemed dumbfounded by her symptoms. Since they were unable to locate a physical reason for her pain, they labeled her as crazy. Although the medical community believed she was exaggerating her symptoms, Edania did not let it bother her. She knew her body. She knew that she was in pain and that something was wrong.
Finally, in August 2006, her physical therapist diagnosed her with widespread reflex sympathetic dystrophy (RSD), a neurological and chronic pain disorder affecting the sympathetic nervous system. In Edania’s case, it causes constant shooting, stabbing, burning and throbbing pain throughout her body. The pain is especially agonizing in her left leg. She keeps crutches by her bed in case she needs to get up during the night and is unable to put pressure on her leg. She has decreased limb mobility, atrophied and shortened muscles, an abnormal gait and intense muscle spasms. In addition, RSD has changed her skin pigmentation, caused her body temperature to fluctuate frequently between hot and cold, and given her migraines, nausea, lightheadedness, insomnia and fatigue.
Edania does not take medications because she has reacted poorly to them in the past and because she believes an all-natural approach is best at her young age. She regularly attends physical therapy to help her regain and maintain limb mobility. She understands that while stretching and movement may temporarily exacerbate the pain, it is a necessity to keep her active. For relief after physical therapy, Edania uses cold gel packs to reduce swelling, alleviate pain and relax muscle tension.
Her life has changed because of RSD. Focusing on schoolwork has become a task, as the pain makes it difficult to concentrate. With pain affecting most aspects of her life, Edania no longer takes simple activities like dance and gymnastics for granted. She has learned at an early age to appreciate health and live for the moment.
Although she is still looking for answers that will bring sustained relief, Edania refuses to let pain conquer her. She managed to graduate high school, attend prom and perform in a parade, and she is now embarking on college. “I see myself for nothing less or more than who I am. I follow my dreams, and try to live in the moment. I take it one day at a time. This will not kill me, but make me stronger.”
Please Note: RSD is now known as complex regional pain syndrome (CRPS).
To learn more about the organization making a difference in Edania's life, please visit:
Reflex Sympathetic Dystrophy Syndrome Association
Courageous Caregiver - Geraldine Phillips
In 1979, Geraldine and Julian Phillips said, “I do,” promising to love, cherish and support each other through good times and bad, sickness and in health. Even after thirty-one years of marriage, their commitment is still strong and present. Nothing has changed the way Geraldine and Julian feel about one another … not even coping with Julian’s twenty-eight-year battle with chronic pain.
At twenty-four years old, Julian was young, athletic and active. He had hiked the Grand Canyon by himself in 1979, and enjoyed his weekly water polo games with friends in London. After a few years of marriage, they were both ready to start a family. Julian and Geraldine welcomed their first of four children into the world in 1982.
Yet suddenly everything changed. While defending the goal during a water polo match that following fall, Julian’s right ring finger snapped backward. Thinking he dislocated his finger, he secured it with a strap and left for a weeklong business trip.
Two weeks following the injury, his hand still had not healed so Julian sought out medical help. His doctor performed numerous injections, which did not ease the pain. He then underwent several surgeries, including one to remove his ulna nerve and blood vessels from his ring finger. This did not help either. With no other options and a fierce burning pain, Julian opted for amputation.
Four months after amputating his right ring finger, he began experiencing tingling sensations in his little finger. He believed he was imagining the discomfort since he knew his doctor had removed all the sensory nerves. Thinking it was all in his head, Julian tried to move forward with life. But the pain continued to wreak havoc on his body.
As the agony worsened, Geraldine forced him to visit another doctor. It was after a thorough exam of his reflexes that he finally discovered he was not crazy. He had developed the neurological and chronic pain disorder, reflex sympathetic dystrophy (RSD). RSD causes the nerves in the body to misfire sending constant pain signals to the brain. It can affect the skin, muscles, joints and bones.
With a new diagnosis, Julian and Geraldine focused on finding treatments that would bring him relief. He underwent one to two surgeries a year for nearly a decade, but it never lessened his pain. It took all his will just to wake up and drive to work, work a full day and then return home.
Luckily, he had Geraldine by his side. She was his companion and rock, finding a way around every problem so their family of six could live life as the two of them always planned. She explained to the children “Dad’s arm was hurt and could not be touched.”
Since the kids only knew their dad with RSD, they never viewed his limitations as being handicap. Instead, the children understood that the pain condition caused dad to act differently. They therefore learned to work with it. For example, Geraldine only used plastic flatware at home since the tremors in Julian’s right arm made it difficult for him to hold items.
Geraldine, Julian and the kids even found ways around the challenges of going out. They became more aware of their environment in order to avoid situations that would exacerbate Julian’s pain. To protect him in public, the kids and Geraldine would form a bubble around him so no one could accidentally bump into him. They also learned to ask for tables in restaurants away from the fans or air conditioning vents, and the entire family keeps straws on hand so Julian can drink.
Of course, there were still embarrassing times when Julian would lose control of a knife and it would fly across the dining area. But Geraldine managed to stay calm and patient. Even during those difficult moments, she has been able to support her loved ones without becoming their crutch. Understanding early on that she could never “fix the problem,” Geraldine recognized the importance of letting everyone work through his or her own struggles. By learning to back away at times, she has allowed her family to develop personal coping skills.
Sadly, nothing was helping Julian and England’s cold and stormy weather exacerbated his pain. While he tried to downplay the extent of his agony, he oftentimes thought a warmer climate might make a difference. Geraldine agreed, and they both decided to move their family to Florida. It did not matter to Geraldine that she knew no one in the United States or that starting a business had its risks. Geraldine had to do what was best for her husband, and she knew her family would be okay.
The family adjusted to their new environment and life. Julian launched his print finishing business, as Geraldine took care of the household and helped him at work. Life seemed to be looking up, as Julian even noticed a difference in his pain levels.
Unfortunately, too many business obstacles caused Geraldine and Julian to sell their business in 2001. He then worked for this company for two years until he and two other high-level employees decided to begin a new business. Julian was in charge of handling the office and sales. Yet three months later, Julian found himself alone; his partners emptied the business bank account and abandoned the company.
This was the beginning of a new set of challenges for Julian. In order to survive, Julian had to operate machines while Geraldine ran the office. This concerned Geraldine. She knew the repetitive stress from labor-intensive work could exacerbate Julian’s RSD symptoms of tingling, burning, hypersensitivity and uncontrollable spasms.
By 2003, Geraldine knew he needed a more aggressive medical approach. They decided to try an implanted spinal cord stimulator (SCS). Although the stimulator controlled his pain levels to an extent, the battery placed in his lower back aggravated him. Understanding that Julian could not tolerate clothing touching the scar tissue, Geraldine had an idea. She wondered if women trousers would be more comfortable since they hit the hips and were cut lower. It worked to some degree.
As Julian refused to let his personal journey with pain interfere with his job, he continued to work the machines. It was during this time he met someone who owned a plant in New Jersey. He was looking for someone to manage the company, and thought Julian would be the perfect person. Despite their reservations dealing with the cold temperatures, both Geraldine and Julian felt it was better to deal with weather than daily labor. In 2004, they moved to the eastern part of Pennsylvania.
Everything seemed to be better for a while. Julian enjoyed his job and was coping well with the wintery days. It was 2007 when Julian’s spinal cord stimulator batter needed replacing. Since Julian was having such difficulty with the placement of the first battery, his doctors moved it below his right ribs. Unfortunately, that did not make a difference. The accumulating scar tissue along each surgical site irritated Julian, and he still had hypersensitivity around the original battery placement site.
Things continued to worsen. His employer fell back on his promise to keep Julian away from running equipment and machinery, a work injury in 2007 caused him to suffer constant pain in his left elbow and lower back, and then in June 2009, another work incident occurred. While using one of the company’s machines, he turned and twisted his arms. Instantly, a huge blast of electricity shot through his body. He could no longer feel the positive effects of the SCS.
Although doctors readjusted the stimulator’s intensity, Julian only regained partial relief. No longer receiving the same benefit from the SCS, he turned to medications to help control his pain as he continued to visit other specialists. Finally, in January 2010, they opted to have a new spinal cord stimulator implanted. Choosing the paddle version, known for its more stable anchors around the leads placed in the neck, Julian was hopeful for a better outcome.
The procedure did not produce the relief Julian was searching to find. Now his hypersensitivity affected his neck, shoulders and abdomen. Geraldine once again got creative. Knowing how the slightest touch or breeze was excruciating for Julian, she began coming up with solutions. In order to be semi-comfortable, Julian could not have anything touch his right arm or neck. Geraldine removed the right sleeve from his sweaters and shirts. She also found tight upper-body undergarments to lay against his chest, back and shoulders, so he would have more support and less discomfort.
By mid 2010, Geraldine finally told him that she was concerned that work was making his pain worse. She needed him to put his health first and slow down. This was difficult for Julian. Although he never wanted to stop working, he also knew he could not keep going at this pace. Julian worked his last day in August 2010.
Despite his family admiring him for his courage and strength, Julian believes his wife deserves the credit. “Geraldine is a trooper. She has never complained and has done everything and more to help me. She moved three thousand miles away from her family and friends in hopes that warmer climate would bring me relief. She says, ‘whatever you need, we will do. I just want you – nothing else.’ She made the ultimate sacrifice, and I am so lucky to have her.”
Geraldine is unfazed by Julian’s admiration. To her, this is just marriage, love and life. “It has never occurred to me that I do anything differently. We just adapted to develop our own normal. Our family is a network and we do not see Julian as disabled. To us, he is husband, dad and peeka.”
Nicole's Recipe of the Month
Raw Zucchini Hummus
Last month I attended a bridal shower where we indulged on amazing raw zucchini hummus. It was so delicious that I asked for the recipe; I even made it for Thanksgiving. Please enjoy and bon appétit! (Thank you FIT for posting this recipe and other great information on your blog.)
- 2 zucchini
- ¾ cup tahini (raw)
- ½ cup lemon juice
- ¼ cup olive oil (cold pressed, if you want it to be truly raw)
- 4 cloves garlic
- ½ tablespoon cumin
- 2.5 teaspoons salt (if you use Sea Salt use between 1-1.5 tsp as the taste is much stronger)
Chop the zucchini and blend everything in the blender. Add the lemon juice and garlic (and salt) a little bit at a time to get the flavor that you want. Remember that measurements are “guestimated” in this recipe – so be sure to taste as you’re mixing and add lemon, garlic, and salt to taste.