Webinare & Videos von der Awareness Week 2020
Webinare & Videos von der Awareness Week 2020
Welcome to My Shoes
2020...need I say more? While I’m at it, 2021, quit acting like your sister, or we are going to send you to your room!
2020 is the new curse word; there has not been a single person untouched by its destruction, however, 2020 gave me the greatest gift in my fight against my HS adversary. I was selected to participate in a clinical trial. This wasn’t a cure, but I began to see my smaller flares start to dry up. I still needed rescue medication, and HS upped the battle with Beatrix. Beatrix, is a new beast on the back of my neck, it has been my biggest HS lesion to date and she likes to show up for months at a time, pain radiating down my shoulder blades and making the most simple task of turning my head an impossibility. However, even with Beatrix’ arrival, thanks to the clinical trial, I was able to start walking. Fabrics that normally irritated my skin and caused flare ups weren’t causing me to flare as often. Rashes didn’t come as frequently. Don’t get me wrong, it wasn’t all sunshine and rainbows, there were still the personal triggers of stress and hormones that I couldn’t control.
For the last 10 years I felt as if I was cloistered in my home, staring at the same 4 walls day in and day out. As a result of the clinical trial walking became easier and I was not going to let this opportunity pass me by. I vowed to no longer take a single step for granted. I was going to use what was left of the study to condition my body so that when the study was over, walking would not be such a struggle.
I began walking. Some days those walks were full of rage and fear and other days they were full of peace and acceptance. I was taking out my emotions on my track. I got stronger. My walks became longer. In the words of my dear sister, “You made 2020 bow down before you,” (not her exact words, but I’m trying to keep it PG13). The medication for the study finished in November. In December I had my most active month with, if my math is right, 251.77 miles (405.185km). After December my flares kicked my butt almost into oblivion, and right back to my pre-clinical trial state. (More on that leg of my journey in a future post).
In celebration of my personal successes and in order to share my new passion for walking I am turning the entire month of June into HS Awareness month. My goal is to make June my most active month to date by walking and raising awareness for HS. If you are reading this and don’t know much about HS, the simple act of walking can be a struggle.
I am entering extreme sports the HS way, by walking. Walking extreme? As I write this, I have had cellulitis for 4 days, but also completed my 2nd official half marathon a few short hours ago. To up the ante, because I am not one to take the easy way, my goal is to walk 300 to 400 miles (482.3-643.74km) for the month. This means I have to average between 10 and 13.33 miles (16.093-21.453 km) per day. I am going to give myself some grace thanks to the unpredictability of HS, but if I can’t walk the mileage needed in a day, I’ll have to make it up another day.
The purpose of this month is to highlight that tasks as simple as walking are not so simple with HS. For those with HS mobility issues, walking is not an inherent right, it is a privilege, especially walking without pain. I feel blessed with every step when I am capable. I want to bring awareness to the fact that simple tasks are not always so simple for us, and for the general public to see how hard we fight every day. I also want to bring the hard work of HS organizations to light in their efforts to educate HS and bring an air of connection to a community in which it can feel like you are battling alone.
I am formally challenging HS to war. This challenge will force me to contend with things that cause me the most flare ups: friction, heat, sweat, humidity in addition to creating stress with this challenge. For me there is no bigger trigger for flare ups than stress. Not only will it be a physical battle, but a mental one as well. On days where I am fully physically capable of walking, my legs will most assuredly feel like they are encased in cement. My commitment and dedication will be tested; I have to wake up at 5am and get started by 6:30 because the later in the day that I start walking the more risk for flares due to heat, friction and humidity.
Do I have to do this? No.
Is it going to make a difference in awareness? I am hopeful.
Why am I doing this? For me, for you, for the future HS patients.
Woman VS. HS...Who will prevail?
Do you want to join me in the battle? Post photos of you walking, even around your house, on social media using the #mileinmyhsshoes
For someone with HS, walking a mile can be an extreme sport. Tell your HS story and why walking can be difficult for you (telling your story can be scary, but can also be cathartic). If you need someone in your corner please reach out to me and I will support you, your story, and lift you up the best I can.
Impossible is a word to be found only in the dictionary of fools - Napoleon Bonaparte
I have been training for this month, I walk a lot. I have access to my caregiver and a nurse at almost all times, and have medical supplies on hand. I have gotten better at pushing my body, but walking with open wounds and HS flares does not come without dangers. I will be creating blisters and doing actions that will cause me to flare. DO NOT TRY THIS AT HOME WITHOUT CONSULTING YOUR MEDICAL PROVIDER. Please consult your medical team before embarking on a new exercise or nutrition plan.