When Life Throws a Wrench, Be Flexible
An update on my life with Lipedema and living real life
My parents are retired snowbirds living in Arizona during the winter. My mom has been slowly losing her cognitive ability over the past couple of years. Everyone in the family knows she has limited time.
I got a call last weekend from my stepdad (I’ll call him John); my mom wasn’t doing very well. She’d been bedridden for a week (or two?), had stopped eating, was drinking very little water, and was more confused than usual.
She went into the hospital last weekend, and has been stuck there ever since. Not able to come home because of her increased care she needs, my stepdad can’t care for her by himself.
I’d been trying to help manage from home, but it’s been hard to connect with the hospital over the phone. However, on Saturday, I finally talked to the bedside nurse. The picture she painted for me showed my mom is probably in the last few days of her life.
I booked a flight and got into town yesterday evening.
As I made flight reservations, I’d contemplated “can I physically do this?” My legs get swollen and painful if I sit too long. A plane ride requires a lot of sitting and waiting and more sitting. I couldn’t take my pneumatic compression device with me on the airplane (specific instructions from the company), and I rely heavily on that machine to manage my lymphedema.
Oh well, what could I do? I threw some compression stockings and wraps in my suitcase and left for the airport.
Throughout my trip yesterday, I took several opportunities to put up my feet. I got lucky to travel in a less-than-booked flight and had an entire row to myself. More feet elevation. When I got to my destination, I felt pretty good!
I realized my diligent self-care in the few past months are now habits firmly in place. This morning, I’ve done some MLD and my calves are still supple instead for swollen little sausages. I’m happy I’ve learned the tools I need to manage the lymphedema. Don’t get me wrong, my legs are still painful and swollen. They always are. But, instead of an 8/10, they’re more like a 4/10. I can work with a 4/10.
When I arrived at Tucson yesterday, John met me and immediately took me from the airport to the hospital.
I sat with my mom for a short period of time. I’m not sure she recognized me, but she did look me in the eyes. Her speech was soft and garbled. She hasn’t eaten for two weeks now. She looked uncomfortable and alone laying there in that dark room.
I told John that our mission is to get mom home asap. I’m going to work with the doctor, bedside nurse, and hospital’s nurse case manager to get her discharged home and see if I can get any services for her. My day job is working as a nurse case manager for the hospital near my home, so this is right in my wheelhouse. I’m fortunate to have the skills to make sure she’s discharged with everything she could possibly need.
I’ll need to stay here at least for a little while to get her home and comfortable.
My Lipedema Progress
I had some critical appointments to attend this week. I was going to see the orthopedist about my knees and my potential for surgery. I also had my Functional Capacity Evaluation (FCE) on Thursday. This appointment is critical for my liposuction preauthorization request. I’ll have to reschedule those two appointments. I imagine it will be another month since it took me a good month to get those appointments in the first place.
I called my supervisor at work to let her know my predicament. She took me off the schedule. My job is non-benefitted. If I don’t work, I don’t get paid, so I’ll also lose out on some income, but, that’s the way it has to be.
Life throws in wrenches. My life is pressed on hold, and that’s okay. My mom needs to come home, and she’s my first priority right now.
In the meantime, I’ve been working on some articles about conservative treatment to manage Lipedema. There’s a lot of interesting and helpful information out there that I can’t wait to share with you.
Take care, and give your loved ones a hug or at least a phone call with an “I love you”
Michelle
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