What’s the most favorite thing about yourself?
My answer used to be my thick hair. It was organically long, healthy, and shiny. I used to follow the Asian stereotype where nothing about my body was #thiccccc, except my hair.
Any time I used to get my hair trimmed, stylists would always admire how healthy my hair was. Any time the nasty stenches of NYC would creep up my nostrils, I would use my hair as a shield and sniff the residual fragrances from my shampoo. Any time I felt anxiety, I would use it as a security blanket and twirl it. Any time there was a fun social event, I would get my hair done to match the theme of my outfit. Any time Paul and I would cuddle, he would play with it. My hair was my identity.
I was scared shitless of losing both my breasts and hair, but I honestly struggled more with the thought of losing my hair. In general, people can see your head at first glance since it’s always fully exposed. Breasts are only visible to those you give consent. I was terrified of losing the freedom of wearing my hair how I wanted as an expression of my identity.
Losing my hair was abso-f*king-lutely gut-wrenching. I read articles where women claimed they “grew bolder as they got balder,” and I just couldn’t seem to relate. I wasn’t ready to let go of my security blanket, and I was just so fearful at that point in my journey. I cried many times over it. I had multiple break downs leading up to the day of my shave. The rocks in my chest and throat never seemed to go away.
Cancer is figuratively the biggest asshole I've ever met in my life, and cancer was my Goliath. Throughout my journey, I felt like I never stood a chance to win. It felt like a loss after another loss after another loss and so forth. A new side effect would appear, an unexpected complication would occur, my care team constantly delivered bad news, bills started to pile, my FOMO was constant, and the list of invasive medical procedures never seemed to end. As losses kept happening, wins seemed harder and harder to achieve.
So, did I grow bolder as I got balder? Unfortunately, no. I grew bolder the moment my hair started growing back. I realized that I could’ve “grown bolder as I got balder” but didn’t because I failed to recognize this:
Remember how I said it felt like a loss after another loss after another loss? The moment I looked in the mirror and saw sprouts of hair growing from the top of head was what felt like my very first win. Shortly after, my range of motion in my right arm was back to normal thanks to the rigorous physical therapy I underwent. Shortly after, I was cancer-free. Shortly after, the horrible exhaustion gradually disappeared. Shortly after, I completed my first one-mile jog since my diagnosis. Shortly after, I returned to work. Shortly after, I was back to creating meaningful memories with my loved ones. Shortly after, I was fulfilling dreams that I neglected for many years.
Everyone’s cancer journey is so different, so I can only speak for myself. When I was in the thick of it and when my emotions were running high, my journey felt something along the lines of this:
Loss, loss, loss, loss, loss, loss, loss … win, win, win, win, win, win, win, WIN.
I got so stuck in the midst of the overall trauma and exhaustion that I completely forgot to remind myself that wins would come my way.
I wanted to share this particular diary entry in my blog because losing my hair was one of the biggest punches in my gut that left a lingering pain until the day my hair started growing back.
If you are like me, and if you are extremely attached to your hair, I want you to know that the light at the end of tunnel may feel far but you will fight your hardest to reach it where positive things await.
Once I came to this realization, I vowed to no longer define my identity through my hair. Most importantly, I vowed to never let the length of my hair and other temporary setbacks in life stop me from living my best life.
My favorite thing about myself is no longer my hair, whatever length and texture it may be.
My new answer is my thick skin.
**This post was republished from Michelle's original blog, which you can view here.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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