A Chapter From My Story

Everyone has a story. Sometimes we live in our story forever. Sometimes, we can’t wait for the next chapter – or even the next book – to begin. We always learn from each story, and what we choose to do with what we’ve learned can have a huge effect on our lives. What I’ve learned is that you can ignore the lesson, acknowledge the lesson, or learn from the lesson — the choice is ultimately yours.

My story is complex. I never realized this until I was forced to take a deeper look at the role I was playing in my life. For as long as I can remember, I have been a caretaker, a fixer, and a pleaser. There is nothing wrong with these roles, but what I’ve noticed about myself and other women who identify with these roles is that often times we lose ourselves in them. Sometimes, it’s not even intentional; we just happen to put ourselves last. Our stories are all different: for some, music is the focal point of their story. For others, making money or having power becomes the entire plot of their story. For me, yoga and meditation are the key players in my story, and these tools have given me the greatest gift I could ever ask for: the ability to be in tune with my body, mind, and spirit. Yoga taught me how to be mindful, present, strong, focused, determined, flexible — the list goes on. Yoga taught me that life does not always go as planned, and the way that we react, adapt, and live our truth shapes us into who we are. When I discovered yoga over 20 years ago, I also discovered a sense of inner strength and a mind-body connection that has guided me to where I am today.

That mind-body connection has been instrumental in my healing story – a story that is deeply personal to me. While I have shared this story with some of you, many of you don’t know the full scope of my journey with my health. Today, I want to share this story with you, because it could save your life or the life of someone you love.

In 2007, my beautiful mom was diagnosed with breast cancer after a routine mammogram revealed a malignant lump in her breast. After her diagnosis, my mom also did genetic testing, which in 2007, was not very common. She tested positive for the BRCA 2 mutation – a diagnosis that would change my life forever. After my two sisters and I did our own genetic testing, it was revealed that they tested negative while I tested positive for the BRCA 2 mutation.

Following our diagnoses, my mom and I each had our twelve-hour surgeries six months apart. We both had double mastectomies, full hysterectomies, and reconstruction all at once. When I think back to April 23, 2008 — the day of my surgery — it’s all a blur. I lost my grandmother and father-in-law a month apart, my mom had had her surgery just before, and the stock market crashed, which had a major impact on many people including my own family. Even after all of this loss, my focus was what it always was: I constantly told myself, I need to get better so I can be a good mom and take care of my kids. I need to get better so I can be a good wife, sister, daughter, and friend.

The constant guilt that I felt – combined with my need to please – kept me from being grounded and in the moment. I could not concentrate on the trauma I was experiencing in my body because I could not be present with what was truly going on in my body. I never thought about the changes I’d experienced in my body before, and I never thought twice about the fact that my breasts were about to go through another dramatic change. I simply did what I was told when it came to my reconstruction surgery. All I could think about was how I was determined to get my strength and flexibility back. I wanted to be able to move as I had before. I wanted to be there for other people, and I wanted to continue my yoga practice.

One month after my surgery, I slowly began my yoga practice again; however, this time it was different. I had a whole new body awareness, and moved slowly and mindfully, as though I was a beginner again. Little by little, I began to build up my strength and open up parts of myself that had been stuck. Although parts of my body felt resistance, I was just happy to be able to move again, and not be so consumed with worrying about breast cancer. So, for the next ten years, that’s how I lived my life. I tried to wipe out the trauma I’d experienced by dedicating as much time as I could to taking care of my family, educating others on the BRCA mutation, teaching yoga, and always finding special time for myself on my yoga mat. I was looking forward to a future without pain and worry – at least, that’s what I had hoped for.

Almost ten years later, in August 2017, I woke up one day to find that my hands and wrists were swollen and inflamed. Both of them ached with an intense pain that came out of nowhere. The pain got worse, and for a short time, it affected my ankles and knees and neck. I felt sick all the time – like I had an insidious flu that would not leave my system. Almost immediately, my mind went back to my breast surgery. Could something from that traumatic event be triggering what was happening now? Could the pain I was experiencing be from lymphedema? When I asked my doctor, he said it was highly unlikely that I would be having a reaction to a surgery from 10 years before. I felt discouraged and I began seeing various doctors, hoping to find answers. I was in so much pain and did not know what to do. Every doctor gave me a different diagnosis, along with wanting to put me on different medications with terrible side effects. I refused and sought alternative therapy. I went to an acupuncturist who referred me to a therapist and a TCM (a traditional Chinese medicine doctor who prescribes herbs). I went to the Mayo Clinic in Minnesota, and came home with no diagnosis. I continued to see my chiropractor that I had been seeing for 3 years, and he also agreed that something was very wrong with my body, yet the source of the ailment was undetectable. I decided to continue exploring alternative medicine, and went for Ayurvedic treatments for 2 weeks. I felt a little better; however, something was still very off.

In spite of my endless appointments, I still performed all of my duties as a mom. I moved one of my daughters into her new university, and the other to a new state to begin her first job. I continued to move at my normal fast pace, but I felt exhausted and weak, and I couldn’t ignore the dark feeling that something was terribly wrong with my body. I started a file called “mystery illness,” and that file turned into a big box. I saved every doctor’s report, every disc from every MRI, and every lab report. Luckily, through my yoga practice, I was able to be in tune enough with my body that I knew something was wrong with me, despite my doctors’ inability to properly diagnose my illness. My doctors offered to prescribe me with steroids and other drugs, but I knew in my heart that their diagnoses were wrong, and that taking the drugs they prescribed would be like committing treason against my own body. So, every day, I would meditate, practice yoga, and try to exercise outside. My once somewhat normal life was now comprised of commuting, sometimes for hours, to at least four doctor’s appointments per week and getting tested for every kind of disease. I had countless MRIs, CAT scans, PET scans, and blood tests. No diagnosis would show anything specific: the only thing I heard repeatedly was that my body was inflamed, which meant it was trying to fight some unseen aggressor. When I met a doctor, I would usually cry as I told my story. I would say, “I am Gayl, and I am a healthy person. I never get sick, never complain, and I feel like I am dying. This is not me, and I want to be me again.” I cried every day, usually in the shower or bath: the only place in the world that my very cold body could get warm, and the only place where my family could not see me unravel.

During my long journey to discovering the root of my illness, I also experienced an unthinkable level of social isolation. I felt like I could not talk to friends and family, because it took so much energy to lie and pretend that everything was okay. It was too difficult to try to explain how I felt, or the fact that no one could tell me what was wrong with my body. I did not want to hear the opinions of others who had no idea what I was going through. I couldn’t even look at social media because it made me so sad to see my friends in their beautiful yoga poses while my own once-strong body was just getting weaker.

I kept my illness from my parents for several months because I did not want to worry them. My sister, Marci, was my only sounding board, and I am so grateful that she let me cry and tell her how bad I felt on a daily basis. I was in so much pain, and I was beginning to run out of options. From February 2018 to July 2018, I was seeing a rheumatoid arthritis doctor and began to take Prednisone, Mobic, and a 30 minute monthly infusion of Orencia. Aside from my face swelling from the Prednisone, nothing changed, so I stopped taking anything at all. In July 2018, I went to Israel with a group of women, and for the first time, I felt as if a few pounds of the tremendous weight I was carrying had been lifted. When I returned home, I really started to decline. The pain was unbearable, my glands felt swollen, and my chest hurt every time I took a breath.

I practically lived in sweatpants, because I could not button my jeans or pull up my leggings. I could not even open a water bottle because my wrists hurt so badly, and I had to use my elbows to squeeze a tube of toothpaste. I had not done an arm balance in almost a year, and when I practiced yoga, I needed special props to support my wrists. It was impossible to do planks or push-ups, and once again, I felt like I was retraining my body as if I were a beginner. I had no energy, yet I could not sleep. I knew I had my family counting on me, including my two little dogs, Kobe and Roxie. I went to see my internist (who I’ve known for over four years), and during our meeting he said, “Gayl, I don’t like to see you like this. This is not you.” We decided I would try RA medications one more time even though I was extremely against them. At this point, I was desperate.

So, for four months, I went every week and received injections of Methotrexate and Orencia. I cried every time. I hate shots more than anything, and they make me so emotional. What was worse was that the shots did nothing, and I did not even feel a tiny bit better. With my immune system shut down from the shots, I felt so weak. I could not go visit my daughter for the very first parents’ weekend at her university, so my son and husband went without me. In January, I went to meet with my RA doctor, and told her I did not feel better. She asked me to try a biologic: another shot with even more side effects. I cried, and against my intuition, I consented to Enbrel. I came home after the shot with eyes that were blown up and swollen, and my whole body itched. I called my sister crying, and I told her I was done. I would not take any more prescription medicine. I took a Benadryl, went to bed, and woke up in pain, but I was at peace knowing I would no longer be taking medications that were not going to help me anymore.

Since the very first day I felt pain in my wrists, I had that gut feeling that my illness stemmed from my surgery in 2008. However, this time, I was not willing to ignore my body or my intuition again. I found a group called Breast Implant Illness and Healing by Nicole, and spent hours and hours reading what 60,000 other women were experiencing. (There are now close to 80,000 in this group) It was so inspiring that we could support each other and answer each other’s questions, but most of all, it was so wonderful knowing that I was not crazy, and I was not going to die. My body had actually been fighting my implants for years, but I thought the symptoms were from being tired, having four kids, moving across the country, never resting, and fulfilling my duties to my family. Finally, after finding this support group, doing my own research, and spending years struggling to get the pre-op and post-op records from my plastic surgeon, I finally confirmed why I had been so sick: my breast implants were slowly poisoning me from the inside out and were destroying my lymphatic system. My strange, phantom illness finally had a cause. Through my strong meditation practice, I decided to have my breast implants removed, no matter what the outcome was. Every morning, I would silently remind myself, “You can do this, Gayl. Don’t stay in bed; you are going to be ok.” I would close my eyes, and visualize my body healed, healthy, and strong – just like it was before my first surgery all those years ago.

My healing story is so hard for me to write about, largely because it is still going on; however, this experience is a chapter in my story I will never forget.

I wanted to be sure to share my journey in detail to help anyone else who might be going through acute, chronic pain. More than anything, I want to inspire others to take full responsibility for their own health, and to listen to their bodies. Inflammation and pain are only the symptoms — not the cause — of so many diseases. Even though we have an incredible medical system in this country, there is still so much that doctors do not know, and there is still so much that can be improved. I urge you to constantly listen to your own body, and to take charge of your health. As women, it’s far too easy to fall into the trap of putting everyone before ourselves, but our own bodies and lives are just as important as our families. I want to move forward in my life as an example of someone who is able to take care of her family, but who is also able to take care of herself. The first step in true self care is rooted in listening, and in creating trust in ourselves. I hope my story can inspire you to connect to your own true intuition, and to always listen to your inner voice — because that voice is more powerful than you know. My inner voice is what saved my life, and I know yours can save your life, too.

On Tuesday, May 7, 2019, I had my surgery to remove the implants that were placed in body 11 years ago. I did not know what the outcome would be, but I did know that, for peace of mind, it was something I needed to do. Today is May 12, 2019, and although I am sore and emotional, in the last five days, I have slowly become alive again. It is almost miraculous. Most of my pain in my joints is gone, my eyes are white instead of grey, and every morning when I awake, I feel like I can take the deepest breath – that deep, life-giving breath that I used to feel every single day. I am so incredibly grateful to once again be full of life and possibility.

Please feel free to share this, and please be sure to always ask for and keep the medical records after any surgery or procedure you may have. While we have an amazing healthcare system, we cannot forget that we must take full responsibility for our own health. Also, please feel reach out to me. I have a long journey ahead of me, and I want to share anything I can to help you when it comes to listening to your body. Thank you for taking the time to read this. I know my story just gets better from here.

Namaste

Stay tuned for the next chapter…