Returning to Life

Happy Monday, my Slayers & Slayer Lovers! I hope everyone is well!

Life is finally returning to normal more and more every day. I’m down to just a nasty looking toe and my “normal” Scleroderma feet issues - which is to say: I’m functioning on my feet again in order to do life rather than being sofa bound like the previous 12 months. 

In the year of being sofa bound because of my feet and home bound because of COVID I’ve had a LOT of time in my head. A. LOT. That can be a dangerous place. As a result a lot of home plans have been formulated and new travel modes have been mulled around - let’s just say, I won’t be getting on a plane again anytime soon. Maybe ever. I’ve always been a road trip girl anyway.

Now that I’m mobile again, all of the plans can start to be put into motion. Slowly, still, as I still DO have crappy-ass hands AND feet. Starting small with daily outdoor time for yoga, journaling, and meditation - as the weather permits. Sometimes, it’s just sitting outside all bundled up, breathing in the fresh air and enjoying the sun on my face. Soon it will be hammock naps in the sun. It’s gardening. It’s creating inviting outdoor spaces to enjoy.  It’s weekly driving excursions. It’s having no pain and energy enough to groom my horse and finally get the burs out of her mane & beard. 

Gratitude is key. Gratitude for the ability to do these things I love again. Gratitude for the fact that, if I’m patient and ride the waves, those things are still waiting and available to me after all this time of being away and focusing solely (pun intended) on me and my healing journey, physically AND mentally. 

BIG LOVE to my girl for STILL coming to the fence for kisses, attention, and grooms after all this time. 

Persevere. Rock on!

💋🤘🏼

DIY Mittens & Fingerless Mittens

My Slayers & Slayer Lovers!

Let’s talk about keeping our hands warm. Big ‘ole struggle and challenge from the get-go with Raynaud’s. Add in the complications of contractures and/or surgical interventions and finding mittens or fingerless mittens that work can be a challenge. They all still tend to be bulky and don’t fit right. They end up being a cumbersome nuisance to me. 

I turned to making my own. I’ve been doing it for years. 

Socks. Socks are the simplest and most accommodating solution I’ve found. Tons of options and varieties to cover all the bases. 

It’s as simple as finding the weight sock you need for the application, cutting toes out and creating a thumb hole. Yes, these leave the thumb uncovered, but in my case, the uncovered thumb hasn’t led to many problems. 

Socks are much more form fitting and go higher up the arm, providing better coverage. No matter fingerless or full “mittens”, it’s quite easy to tuck a hand warmer inside against the back of the hand or under the wrist to provide some additional heat. 

I use lightweight, trouser socks for indoor/office situations and heavier wool for outdoor applications.  

Stay warm and functional, Slayers. 

Persevere. Rock on. 

💋🤘🏼

Instructions: For fingerless mittens the design is simple. Just cut as much out of the toe as necessary to get the length you need. 

Turn the heel of the sock to be where your thumb is. Cut a small slit in the heel area and voila, you have a thumbhole.

Instructions: Regular mittens  are REALLY simple. They look a little a “funny” because of the heel placement, but there’s a functional reason I do it that way ...

For these, put the sock on your arm, fully extended so the toe is at the tips of your fingers. In this scenario, place the heel at the back of your hand/wrist like in the picture. 

It looks a little funny, but it works great as a hand warmer pouch/or in this case, allows my Apple Watch to have a pocket to rest in without stretching the sock out. 

Now, note where your thumb is and cut a little slit for it to pop out. 

Voila! Mittens. 

Yearly Reflection Time

It’s that time of year! 

Nope. Not the holidays. The time of year that forces me to pause and reflect on my life, life in general, and my journey. It’s the time of year I get a little more philosophical, spiritual, and definitely more grateful. 

16 years. To be honest, 16 years ago, I didn’t expect that I’d be sitting here writing this today. I was hoping for 5 years, thinking I’d get 10 - IF I was lucky. 

2020 has been the worst year I’ve ever had with ulcers. It’s possibly the most sedentary I’ve EVER been - even in comparison to how my body felt “then”. Such a weird thing to witness - how this condition manifests itself at different periods in this ONE body. The ulcers suck. The pain is indescribable. As a result, 2020 was not a party. Regardless, as compared to the alternative, I’ll remain grateful. Grateful that I’m still here and grateful for the lessons I’ve learned and continue to learn on this every winding journey of a life with Scleroderma. 

Persevere. Rock on. 

💋🤘🏼

♾♾♾♾♾♾♾♾♾♾♾♾

2017

Scleroderma Scoop wrote:

My Slayers & Slayer Lovers,

I wrote this a couple years ago, and to be quite honest, I can’t recall what spawned this piece. I can tell you, though, that it’s fitting in any given day. 

Especially today. 

14 years ago! December 1, 2014 I embarked on a journey that had no definitive destination.  I was staring down a proverbial double barrel shotgun and hoping that I was able to deflect both blasts: Scleroderma likely killing me in a year or the experimental high dose chemo therapy possibly killing me sooner ... in the hopes that neither happened and I came out of the fight with my life intact. 

That high-dose Cytoxan treatment protocol is in the top 3 hardest experiences in this life with Scleroderma. One I wouldn’t choose to do again and yet, I’m ever so grateful (mostly) for having done it that one time. The lasting effects that that much chemo can have on a body can be rough. 

It may not have stopped my Scleroderma in its tracks, but it did slow it down and change its path enough to get me to the place in my life where I discovered more options and my own control over this disease. To give me this second chance, so to speak. 

Always grateful for coming through the other side of everyone one of life’s struggles. Always with new perspective and appreciation. 

Ever changing. Ever forward. 

Persevere. Rock on!

💋🤘🏼

♾♾♾♾♾♾♾♾♾♾♾♾

2016

A chapter ... or mindless babbling. Call it what you will....

In an instant our perspective of the world and the life before us can be flipped. Turned upside down. 

You can know yourself, have a path, have a plan, be focused and see things clearly....in an instant it can change. 

The catalyst can be off in the distance or it can be right up in your face.

 It can be a glimpse of an image captured in a far off war torn place. It can be the assassination of a president, set to change the world. It can be two towers falling. It can be the joining of two souls. It can be the gift of new life. It can be chronic illness. It can be travel to the ends of the Earth. It can be the end of a relationship. It can be the death of a loved one. 

It can be literally any single thing that can set our perspective askew. 

Sometimes the shift is a gift. A new path. A brighter, clearer view. 

Sometimes the shift can be difficult and suddenly it's harder to make sense of things. It's harder to wrap your brain around The Who (autocorrect thinks I'm talking about music and after repeated attempts to fix it, it's just funny, so I'm leaving it!), what, when, where and WHY of life. 

Though we should want to function in our most authentic manner when moving about the world, sometimes, I think it's OK...sometimes, it might just be better to "fake it 'till you make it" in the hopes that one day we can find our new path and new perspective and can live that truth without faking it. 

Sometimes, we pretend to be OK when we're really not OK. 

Do what you have to in order to "break on through to the the other side." (See what I did there?  Music references abound!). As long as you aren't intentionally hurting anyone - do what works for you, and always ...always 

Wander. Believe. Live. Dream (big dreams). Love. Grow.

And most definitely rock on. 🤘🏼

Stress’s Physical Body Manifestations

This was an “enlightening” Brené Brown podcast and I may read the book now. 

I like Brené, but haven’t listened to her podcast. It was Universally placed in my sight line today after a “reeling” 48 hours of 💡 💡 💡 moments.  I was meant to listen to this. 

In the podcast they discuss how stress can manifest in physical ways in our body, after the stressor has been removed and we “think/thought” we’ve dealt with it. 

Many times, I’ve discussed here how stress is a disease trigger for many of us. Interestingly, I had become a self proclaimed pro at managing stress now. 

2020 has taught me different. Not in relation to all the crazy shit that’s going on in the world - NO! Instead I have been educated on how I was (or wasn’t) managing my stress prior to 2020 starting. I thought I was listening to my body - now 11 months into the year ... 11 months dealing with THE MOST grueling and painful ulcers, in places I’ve NEVER had them in 18 years with Scleroderma - I have FINALLY discovered that I was NOT and my body had to SCREAM at me to be heard. 

11 months, y’all. The final realization, awareness, smack upside the head and the hindsight that go with it are trippy ... fo’ sho’. 

I feel like “White Men Can’t Jump” ... where they are arguing over the difference between listen to and hearing Jimi Hendrix. 

Anyway ... have a listen. To the podcast. Or Jimi. Or both. Whatever shakes your tail feathers. 

Persevere. Rock on. 

💋🤘🏼

Veterans Day Reflections

I shared the below post on my social media page 4 years ago. It will always ring true. 

At age 17 I made one of THE most important decisions of my life. Unbeknownst to me, this would the first decision that would ultimately save my life by setting my journey on a course that would one day allow me to be “in the right place at the right time.” 

We can never know how any decisions we make will play out. We do the best we can in the moment, hoping that one day, we can look back, when hindsight is 20/20, and that things played out in our favor. 

I can sit here and re-play so many moments from that day in my head. Very cognizant of the fact that had I chosen the alternate option available to me at the time, there’s an extremely high probability I would not be here, writing this post today. 

Days and moments like these really can play on and challenge our beliefs and perspectives about life, purpose, Divine Intervention (or lack there of), The Universe, chance, timing, and so on. 

Happy Veterans Day, my Slayers and Slayer Lovers. 

Persevere. Rock on. 

💋🤘🏼

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(From 2016)

I'm gonna get all reflective on ya!  Surprised?  😉

As I see my timeline flooded with basic training pictures from all of my friends that have served and deserve to be honored on this and every Veteran's Day it makes me look back on my life and remember the exact day that I made the decision to join the military ... and THAT day was "THE" moment in my life.  That ONE moment that I can definitively look back upon and know down to my toenails that is was THE single most important decision for the rest of my life ... even in comparison to the fact that just 12 hours before the attacks of 9/11, I had plans to be at the WTC that morning...still...joining the AF is THAT ONE pivotal moment. 

I can't recall why I knew that "home" was not where I would stay.  I knew at an early age that I had to "get out".  On July 7th, 1994 I went to the recruiter and signed the papers.  I was ready a year before I even graduated from high school.

I've never looked back.  I've never regretted it.  In many ways THAT day and that decision saved my life.

I joined the military in part to see the world.  That didn't happen in my Air force career and though I was bitter at the time, I am ever so grateful now that I never did.  I landed right where I was supposed to.  I learned some great values.  I served a mission I am proud of and actually saved lives doing it.  I made great lifelong friends.  I have some great memories to include yelling at a Captain in the hospital and living to tell about it! 

Had my military career taken me where I originally wanted it to, I wouldn't have the people I have in my life and there's a possibility that I wouldn't have the health, as sketchy as it is, that I have today.  In "not getting what we wish for is sometimes a blessing in disguise" - had I traveled, I likely would not have been living in Maryland when I left the military and be fortunate enough to be referred to and have access to TThe Johns Hopkins Scleroderma Centerfor my treatment so early on in my diagnosis.

Interesting how Veteran's Day can make one thankful in such a different way. One decision made differently and our lives can/could be exponentially different than they are today.

Wander. Believe. Live. Dream (big dreams). Love. Grow.

Rock on.

Pain Meds

The Other Side of the Opioid Epidemic: Denying Treatment to People With Chronic Pain

This is a GREAT read!

     “Like many pain patients, I initially 

     resisted taking opioids. I exhausted 

     every other possible treatment first.”

How true that rings! Addiction runs rampant in my family. Coupled with the news stories of the opioid epidemic and fears of being judged by healthcare, in turn not being able to get pain meds when I REALLY REALLY need them - I forego painkillers as often as possible. 

Reading this and then reflecting on 2020 and the fact that I’ve been in some level of acute pain on almost a daily basis, for the entire year, due to ulcers, may change my perspective a bit. 

     “There is an important but often 

      glossed over distinction between 

     using medication for a health 

     condition in a way that restores 

     function... and misusing a 

     substance in a manner that 

     destroys function."

There’s a vast difference between misuse and taking 1-2 daily pain medications to 1)allow for peaceful (restorative & healing) sleep and 

2)accompany other pain management techniques to function during a day. 

I believe the answer lies in having a close relationship with your healthcare team - a team that MUST understand the depths of the pain that can come with your condition. Individuals that know the difference between chronic pain and acute pain and how to navigate pain management for each. 

Most importantly, we have to know ourselves. 

Persevere. Rock on!

💋🤘🏼

Scleroderma Hack - TENS Unit for Drug Free Pain Relief

A couple weeks ago a friend and I were lamenting to each other of our struggles with acute pain. Though we suffer from different illnesses, we have many of the same symptoms. One of them being acute nerve pain. Her pain management doctor had recently set her up with a TENS unit and she said it’s made a world of difference. 

As I’ve been dealing with ulcer pain for the better of a year now and unhappy with having to occasionally use pharmaceutical pain meds, I did my research and figured I’d give it a try. One more tool in my kit can’t hurt. The infrared light, the acupressure tools, the CBD balm, and self massage all offer a smidge of pain relief throughout the day, but the nighttime can be a different story. Sometimes, even pain killers aren’t fully effective at night. Especially if I’ve had to resort to using them throughout the day, which I try to avoid if at all possible. 

So, after 3-4, nights of only 2-3 hour stretches of sleep plus the ongoing pain I was starting to “lose it” when this conversation took place. Like I said, I did my research, found one on Amazon with excellent reviews and then waited patiently for this little nugget of joy to  be arrive. By the time it arrived I was on 5-6 nights of virtually no sleep. It arrived early in the day, I charged it while reading the instructions, then hooked it up and found the setting that worked for me. Set the time for 60 minutes and laid down on the sofa. 

I woke up 4.5 hours later and felt like a brand new woman. 

Though it’s listed as helping circulation, due to the vibration factor, I I was concern going into this that it would initiate a Raynaud’s attack. So I believe it’s worth mentioning in my situation, it actually improved circulation like it claims. I have a toe on that same foot that I’ve been monitoring as it’s been more on the purple side and a bit sensitive to touch. The TENS unit reverses that. Not only while wearing it, but for an extended period after. 

Needless to say this has become a crucial device in getting through this last ulcer and I wish I would have had one 11 months ago. 

Now, it’s not 💯 for me. Some days it feels a little less effective and I struggle. Also, for whatever reason, for me, at night it doesn’t have the same effect. That’s OK. I’m far more amenable to pain meds once a day to sleep. As mornings bring excruciating pain, about an hour before I get up for the day I hook it up and let it work while I’m still “in and out”. Then, once I’m up, I put it in a makeshift fanny pack and wear it while I feed the horses. GAME. CHANGER. The morning before I tried this setup I whimpered and cried my way through chores and questioned WTF I’m doing living here. Now, all is right with the world again and I still love my ponies. 

Diet. Movement. Natural remedies. Rest. Listening to the body. Mother Nature. Science. Technology. ALL having pieces of the puzzle that allow me to ...

Persevere. Rock on. 

💋🤘🏼

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For TENS information, go here ...

Product link here

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