Fiercely Independent Pam

Tag: Chronic Illness

  • Appearance Matters: When Chronic Illness Steals Your “Look!”

    No matter how hard I try to pretend that my appearance doesn’t matter to me, I always know it does. During the pandemic, I was very sick. I spent more time in the hospital than home and had many rounds of tough medications and treatments. All of this caused havoc on my body and its appearance.

    I was on steroids constantly and not just a little Medrol pack or short course, but iv and high dose Decadron for months at a time. At one point I gained so much weight, so quickly that my stretch marks began to pull apart and tear the skin. The steroids allowed me to continue breathing and it was stressed to me that I needed them. I spent half my day on a non-invasive ventilator and sometimes the whole day. All of this took an amazing impact on my appearance.

    When you add on the complications of the pandemic- not really going anywhere or being able to get to a salon, the results were dramatic to my appearance. Besides the stretch marks, which I continue to battle with every day, my hair was thinning and falling out. My once thick curly/frizzy hair became baby fine and a simple act of brushing it or washing it, led to major loss. My eyebrows thinned out as well and became almost non-existent. I hated my appearance, but also was so proud of myself for surviving.

    Fast forward to October 23, 2020, I made myself an appointment at my favorite salon for a hair cut (shape) and color. I remember it was surreal to deal with the rules of the pandemic and wasn’t able to have it blown out or dried. A simple visit became a statement that I was going to “win.” Treatments weren’t going to hold me down and hold me back. I radically changed my appearance from a worn down- sick person, to a warrior, determine to fight my demons and not let the scars win. I chose to go red and loved the color change.

    Little did I know that I would eventually have to shave my entire head for brain surgery. (Click here for more about that). My hairdresser at that amazing salon was with me through it all! She is a perfect example of a hero without a cape.

    I will continue to not let the hard days win by ignoring my appearance when necessary, but celebrating it when possible. Today, I continue to fight with my hair- but love the curls God granted me and the wild, unpredictable nature of having curly hair.

    As for the stretch marks- I am at a loss. I have decided the best thing to do is embrace them as battle scars. They stand as a testament to all I have won! While not the convention of beauty, I find them amazing- a statement of what our bodies can do for us!

    The result of my beauty treatment at the salon- notice the awesome color, but also the crazy thin hair and hairline.

  • An Awesome Accessibility Adventure in My Backyard!

    So, it has been a hot minute since I’ve posted. I’m learning that I need to take a day or two off from all things digital each week to help rejuvenate my creativity. I had an amazing weekend with my college roommate and her wife! It is amazing to be with people that you know do not see you as a burden or get frustrated with your mobility/health needs. Accessibility helps tons too! I wasn’t sure what direction this post was going to go, but I realized that I wanted to share my adventures in accessibility more than anything.

    I am still non-weight bearing because of my hip injury so I wasn’t sure how we were going to get out an about this weekend. Friday and Saturday were filled with great food adventures and quality time spent together. We managed to get out by using my manual (non-custom) wheelchair. Relying on Lyft rides to get where we wanted to go, I was pleasantly surprised that the drivers, with only one exception, helped to put my wheelchair in the trunk. While wheelchair accessible ride-shares are not available in my area, their help made us getting out possible.

    We had planned to go to a local kite festival on Sunday, but a coastal storm canceled those plans. I already hired a wheelchair accessible van for Sunday so that I could bring my power wheelchair out for the event. We switched gears and decided to go to the mall.

    I realized I haven’t been shopping at a mall in at least six years. It was great to get around and be able to do some in person shopping. I found the mall and most stores to be very accessible. Most paths were wide enough for my wheelchair and people were friendly and helpful. It helps that this is still what I would consider a “newer” mall and built with accessibility in mind. The bathrooms were great and even had many “family style” restrooms that provide more space and adult friendly changing tables.

    The real excitement was being able to go bowling at the “fancy” high tech bowling alley at the mall. We checked in and inquired about accessible lanes and without a blink of an eye, we were set to start bowling. I used a ramp type thing to push the ball down the lane while staying in my wheelchair. There was a learning curve for sure and we even figured out how to put the bumpers up for me (and only me) to compensate for the learning curve. There was no fuss about it being accessible and my needs didn’t hinder my friends playing either. This is true accessibility!

    The only drawback to all this accessibility was the cost. Wheelchair transportation is not cheap and having no other options is tough. We must fight harder and advocate for total accessibility by having transportation available for wheelchair users. There are noble people and local organizations that are trying to make this a reality. What options exist by you?

    I loved my adventures with my friends this past weekend. Accessibility allowed me to fully take part in the fun! My hope is that everyone who needs access to fun adventures, which is everyone, gets the chance to make this a reality. This needs to happen not just for special days, but as the norm.

    Getting ready to get a strike!
    Core Memory
    Need to perfect my form!
    The very cool food delivery robot!

  • “B” is for Bee AI Wearable, Mostly a Love Story!

    My newest toy is our second selected product in my series- The ABC’s of My Favorite Products. I wanted something to help me “jump” into the world of AI that would actually help me accomplish something I couldn’t do a well on my own. I decided that some sort of recorder that could summarize my health appointments would be super helpful because I always think I will remember what the provider said, but I don’t. I’m also not the best at taking notes at the time. I looked at Bee and the Plaud.

    So I did some good research and didn’t want to break the bank. I decided on the Bee. It was on backorder for a little bit, but is now shipping on a regular basis. I waited about three weeks for mine to come in and quickly opened the box so that I could try it out!

    After a quick charge (USB-C), a download from the appstore (it’s only available for iPhone right now), I was able to quickly pair it via bluetooth to my phone. In the box, I found the device, two different bands (black and yellow), a clip, some fun stickers, and a quick start guide. I wear a lot of things on my wrist already, so I decided to go with the clip. I first stuck the Bee on my life alert pendant, but didn’t like that too much, so it now lives on my key chain.

    The set up was very easy, including training it to learn my voice. The app is simple and intuitive. The real “magic” was when I used it for my first doctor’s appointment, a telehealth with my urologist. After attaining permission (he asked first to use his AI device). I pressed the button on the Bee and it lit up green. No noises or anything distracting. It processed the conversation right away, facts about me were created (pending my approval), and a to-do list was also created. My favorite part was the summary I received the next morning. It was easy to read and captured not only the facts, but I was blown away by how it captured the mood/feelings of the conversation.

    I continued to use the Bee through several doctor’s appointments last week, and believe I have found the device I never knew I needed. The more it learns about me, the better the notes and to-do lists get.

    There is an obvious concern for privacy and safety when using any sort of recording device. I have made it a habit to ask permission before hitting the button and carefully read the notes. Bee has recently been acquired by Amazon, so the jury is still out about that upcoming change.

    In addition to loving about 95% of the product, I already had a scare about losing the Bee. It came out of the clip (a common concern online), luckily good old St. Anthony came to my rescue and I found the device on the floor of the exercise room. I am going to figure out a way to secure the Bee to the clip that still allows charging and swapping out to the wrist straps.

    Unfortunately, the affiliate and discount program is still in creation, so I do not have any discounts for you, but will update this as soon as I can. Do you use any sort of AI device? How do you keep track of the information shared during a doctor’s visit? Reach out if you have any questions about the Bee or if you are thinking of getting it or something similar.

    Attached below are some screenshots and pictures of my Bee device “in action.”

    Unboxing…
    The two wrist straps and quick start guide.
    The Bee on my key ring in the clip!
    An example of the building of my to-do list. (screenshot)
    The overview of the summaries.
    The summary that appears overnight! (screenshot) !