It’s been a while since I have written about my journey. You might have been wondering where did Emma go? And you aren’t alone in that. I too have been wondering where did Emma go? After months of warriors’ ferocity fighting for lipedema surgery coverage against the government, I arrived at my first surgery date worn out and entirely broken. It has been 12 weeks since my first surgery. While my body is healing well, I am trying to do the harder work of setting my mind right again. In this space, I have been silent.
Always fighting
It was minutes before my first surgery and I sat in my hospital gown gripping my phone. Feverishly typing emails to Manitoba Health explaining the unethical actions of a local plastic surgeon and urging them to see his pathetic attempt to cover his behind for what it was. Begging to be seen and heard from the Health Minister, as I faced my surgery in mere minutes without any support from the province. They left me dangling in limbo following two concurrent denials for coverage of my lipedema surgery. Knowing one day soon letters of advocacy were due to arrive. Those letters might save me, get me approved. This swirling embattlement kept me wrapped up right until the moment they had me lay on the OR table and go off to sleep.
My poor nerves. My inner warrior kept fighting. All the way through the dark and right until the first moments of light consciousness brought me awake after surgery. While I don’t have any memory of these events; apparently, I was barely conscious but trying to fight my way off the OR table. It took 5 staff members to safely restrain me until I could come to full awareness after surgery. I woke up sometime later in the recovery room, with no awareness of what had happened. It was only days later that I learned about what had occurred. Feeling embarrassed for the drama my subconscious warrior caused, I apologized endlessly to the medical team that cared for me. It was clear to me then that I needed to find my centre again.
The snow fell and kept falling until the snowbanks were as tall as the houses and the roads lost all definition
Winter
It’s been a long cold winter here at home. The snow fell and kept falling until the snowbanks were as tall as the houses and the roads lost all definition. Street parking is now only for outlaws as the rules need not apply. Our car tires ride deep in the ice ruts steering us along like the tracks of a carwash. The river froze early this year granting me access to my beloved river trail for kick sledding. But the cold oppressive nature of a Winnipeg winter kept me away most days. Day after day I found myself hiding from below a mountain of quilts. Paralyzed by the idea of getting up to face another task. Choosing breakfast was overwhelming. Picking out an outfit felt far more difficult than it ever should. The simplest tasks now created this freeze response. The idea of making plans like going out to the store or for a walk became overwhelming and I could feel the constant tension rising in my chest. The swirling oppression of anxiety and depression set in, steeped in the endless winter, I knew something had to change.
Breath
I had heard other women with lipedema talk about the deep mental effect of this disease and its ripple out into every aspect of one’s life. Similarly, those who had lipedema surgery had talked about the massive impact on their emotions following surgery. To say I was unprepared is an understatement. In recent weeks, I have been working on re-centring myself. Meditation and connecting with mental health professionals have been a good start. Finding my breath has been powerful. Realizing that I have been so wrapped in fighting for getting my needs covered that I had lost the ability to be calm. My artists’ imagination allows me to explore vivid meditation complete with scenic images of nature and colour. For the first time in such a long time, I could feel my shoulders come away from my earlobes. The tension in my body slowly released its grip on me and for the first time in what felt like forever I experienced the bliss of calm. I am learning to use my breath to cope with the enormous stressors that knock unrelentingly on my front door. I suspect this will be an ongoing process.
Second Surgery
The days are ticking down until I will gather my wits and again head for California. My second surgery with Dr. Schwartz will be more involved than the last. This time focusing on the back of my body removing as much lipedema as possible from the back of my legs, buttocks, and arms. After the first surgery on the front of my legs I have been able to walk with less pain and for longer distances. Some days recently I have felt more like my “old” self walking at a good pace through my neighbourhood. The first surgery relieved me of my limp from ankle pain. I am excited to have the pain removed from the back of my legs and arms. Little by little I am filled with hope that I might be able to find my life again.
Different this Time
The wise Nurse Nancy of Dr. Schwartz’s team said to me “Girl, you’ve got to meditate and find your inner calm before your next surgery”. She bandaged my wounds, cared for my post-op body, and dressed me in compression. Beyond the needs of my body, she saw my emotional needs. This is what makes the Total Lipedema Care (TLC) team different. They treat the whole person, not just the disease. I feel like this surgery will be different. I am less scared this time. The fear of the unknown was such a big factor last time. I trust the team and know I am in good hands with Dr. Schwartz. My mental state is hopefully in a better place this time. No longer caught in the cycle of fighting for care, instead focused on the care I need to give myself mentally and physically.
I think I found her
She was lost to me, the gentler version of myself, tucked beneath the armour of my inner warrior. I think I have found her again. My inner warrior is taking a much-deserved rest at this time and I am readying myself for this next phase of my journey from a different vantage point. I cannot risk losing myself again.
Thank you for sticking with me on this journey.
4 Responses
Thank you for sharing. I keep sending as many messages to just get doctors to listen. We have to keep trying but remember your health comes first.
Thank you for sharing, Emma. I can’t begin to imagine what you have been through these years. It is so wonderful that you have found this team in California to offfer you relief from the horror.
We are thinking of you as you continue in your journey and approach your second surgery. Will look forward to your next instalments, and the good news of the outcome. Stay strong, be well. Thanks to Dale for his marvellous support and encouragement. We love you guys. Can’t wait to have you back at the Gallery!
Hello Emma,
Thank you for sharing your story. It couldn’t have been easy writing about the first phase of your journey.
The stress you were under trying to fight our healthcare system just to have your surgery covered, must have been exhausting.
I am pleased that you have found yourself and are in a better and stronger place. Keep taking care of you, Emma, be the person you need to be for this next stage of your journey, the second surgery will be a game changer for you to move forward. Let the warrior in you rest for now and be at peace with yourself.
The warrior Princess can return to fight Manitoba Health with much more strength.
I will be keeping you in my thoughts and prayers
Sue
My darling Emma
I am so proud of all you’ve accomplished and your positive attitude going forward. I hope your surgery goes well and your recuperation will be uneventful. You have courage and strength, and I know that you’re going to get through this as quickly and painlessly as possible with the help of your wonderful surgeon and his team. You will be in my thoughts and prayers always and I hope that in some way, the government will come to its senses and pay for what is owed you.