Typing with trembling hands. After months of research and ruminating I have booked my first surgery for 8 weeks from now. I’ll turn 38 in January and I will be one step closer to taking steps without constant pain. Daily I live in so much pain that I simply cannot wait any longer to get help for my lipedema. I have decided to seek help from Dr. Jaime Schwartz in California USA. On the other side of my fear, I have to believe there is hope. Hope that I can rejoin my life, my family walks and activities, my job as a nurse. Every part of my life has been sitting on the shelf waiting for the day I feel like me again.
Selecting my surgeon
I think it’s fair to say that I have obsessed over which surgeon was the right option for me. After months of extensive research, I selected my top five surgeons to consult. Each was a lipedema specialist that came highly recommended from other lipedema patients. My criteria were very strict.
- Must be a lipedema specialist. Not just any plastic surgeon will do here.
- Must be equipped to deal with advanced stages (3-4) and higher BMI / weight cases.
- Must be willing to detail full surgical plan from start to finish (all required procedures and expected outcomes)
- Must be willing to write a letter of medical necessity to submit for Manitoba Health application for coverage and use with the CRA for tax season.
- Must provide general anesthesia for surgery (I cannot handle being awake for that!)
- Must be board certified
- Must be published and evidence-based best practice.
The factors that ultimately pushed my decision to Dr. Schwartz were based on my comfort level. I didn’t feel comfortable travelling to Europe. Airplanes are one of my great anxieties. There is no way to sit comfortably in a 31-inch seat (economy) my lippy hips are simply too wide for that, and the pain of being crammed in a tiny seat for 18+ hours had zero appeal. Flights from Canada to Germany in premium would cost over $5000 per flight. That was simply not going to be manageable.
Other factors against heading for Europe… I have reservations about not having my care team (doctors, nurses, aides) unable to speak my language. Call me a control freak but the ability to be heard as my own advocate is so important to me. As a nurse, understanding this process and my care is woven into the fabric of who I am.
Covid restrictions and the evolving situation overseas were also a major consideration for me at this time. There are so many unknowns and I wanted to know that in an emergency I was closer to my kids at home and could potentially drive to the border if I had to.
Do one thing every day that scares you.
What about insurance coverage?
My application to Manitoba Health is still moving ahead, and I have every intention of advocating for coverage for my surgeries. I am writing letters to the premier, provincial health minister, my local MLA, and the Canadian Minister of Health. All of these are in the effort to advocate for my right to access appropriate healthcare covered by my Canadian healthcare system.
The reality for me and so many like me is the process of fighting the province can take years. In the meantime, I cannot live in pain any longer. So I’ll document my journey, my treatments, and follow the steps to apply for care.
Cashing out my retirement savings
That is the only way I will be able to front the cost of getting started on my surgeries. Far from ideal and certainly a cause of deep frustration; I am doing what I must to help myself.
What is the point of having money to “retire” if I am disabled and cannot go back to work as a nurse? Or live the next 25 years in so much pain that I have no quality of life?
It’s hard not to feel my heart pounding over the cost, the fear of surgery, the fears that I might live in pain forever.
Small goals
I take a deep breath and calm myself. I think about what it will be like to walk with my kids to the park without stopping. Maybe go shopping for pants and find a pair that is just right. To take an airplane without apologizing for my body. To not turn down a seat at the restaurant because now “any seat” will do. To feel like just any other person, not less, because I am “more”.
Maybe one day… I can hike that Belly River trail again? Imagine that? I can feel a warm smile wash across my face. It’s like feeling the sun in the dead of winter. A warm glow, a hopeful glow.
Hopeful, and Scared to Death
I’ll probably spend the next 7 weeks driving myself crazy with worry. Scrutinizing every detail and decision. I have decided to try to be excited instead of scared… but it feels pretty moment to moment right now.
If anyone out there has tips for thriving through this process please reach out and share.
Surgery date booked, flights booked, hotel booked… now we wait.
2 Responses
This is beyond exciting and I can’t wait to read more about your journey! I am so happy you have the means to do it all the while fighting for coverage, too!
It will be worth it in end, I am sure 🥰
Keep us posted! Sending good vibes from down here in Nova Scotia.
Ps Shannon F sent me the link to your blog. My name is Shanan, too, only she spells hers wrong 😝
I think this is brilliant! I totally agree that the monetary expense is worth the increases in your quality of life. I’ve been debating this myself and I came to the same conclusion. So, so happy for you. Can’t wait to hear next steps, it’s very inspirational for me and I’m hoping to follow down the same path.