Tuesday, November 17, 2020

Stress’s Physical Body Manifestations

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

I like BrenΓ©, but haven’t listened to her podcast. It was Universally placed in my sight line today after a “reeling” 48 hours of πŸ’‘ πŸ’‘ πŸ’‘ 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. 

πŸ’‹πŸ€˜πŸΌ




Wednesday, November 11, 2020

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. 


πŸ’‹πŸ€˜πŸΌ

〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️〰️



(From 2016)


I'm gonna get all reflective on ya!  Surprised?  πŸ˜‰


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.

Sunday, November 1, 2020

Pain Meds




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!

πŸ’‹πŸ€˜πŸΌ

Tuesday, October 27, 2020

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 πŸ’― 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. 

πŸ’‹πŸ€˜πŸΌ

〰️〰️〰️〰️〰️〰️〰️
For TENS information, go here ...

Product link here
here

Thursday, October 15, 2020

Food Find - MUD/WTR - tea

Happy Thursday, my Slayers & Slayer Lovers!

Today’s “Food Find” is MUD\WTR, a tea, of sorts. For many of those that have started this product, it has replaced their morning coffee! For me, it has replaced my love and loyalty to Starbucks Iced Chai Lattes. FINALLY! This has been a years long, hard fought battle. At various times I’d managed to get it down to just a Sunday “indulgence” and other times, like recently, it has been a part of the morning routine. I’ve created all sorts of rationalizations that we don’t need to get into, but, when I finally owned it, and knew it was time, it’s been a super great transition. 

Admittedly, this product was in my kitchen for a few months before I committed. I had tried it a few times and couldn’t get my recipe dialed in. I’d try it, not like it, go to Starbucks... lather, rinse repeat. 

Then, two weeks ago, something changed. It was time. I worked with it and dialed in what lights my tastebuds up every morning. It’s now part of my routine. I’ve even had a Starbucksxwhile running errands and it wasn’t good. I could taste “the fake”. Didn’t even finish it. 



There’s a description this company uses and it just tickles me with the accuracy and appropriateness for:

     “What does MUD\WTR taste like?     
     Like chai and hot coco had a lil 
     hippy love child. With blend of 
     chaga, reishi, lion’s mane, 
     cordyceps, masala chai, cacao, 
     and turmeric you get a sharp mind, 
     physical performance, and a 
     supported immune system without 
     the caffeine jitters. With no sugar, 
     20 calories, 4g of carbs and all 
     100% organic, vegan, gluten-free 
     and @whole30approved 
     ingredients it's tastier than it 
     sounds and healthier than it 
     tastes.”

Y’all. It’s delicious. The company is one this yogi can get behind. They even have guided meditations via IG LIVE on Fridays. From what I can tell ... A company that not only talks the talk, but also walks the walk. 

Good food that makes us feel good. It’s a great way to ...

Persevere. Rock on!

πŸ’‹πŸ€˜πŸΌ

Thursday, October 8, 2020

Food Find - Huel Meal Replacement Powder

Today’s “Food Find” is meal replacement (of sorts) powder. The company is Huel - again, I’m getting nothing for sharing their product info with you. I’m sharing because it’s a product I use, I am good with the ingredients, and thus far it’s suiting my needs. 

Athletes and others probably use this to actually replace a meal or be an addition around workout time. I use it, not to replace a meal, but to bulk up my “whimpy” meals. One scoop, mixed with some water added to soups or meals with a sauce add 200 calories for me. That’s a good dose of calories for this lady trying get some weight back on these bones. 

There are a gazillion powders out there, why did I choose Huel? It was the only plant based product with ingredients that don’t freak me out, non-gmo, full of good for things AND it had “unsweetened and unflavored” as an option. I’m working hard to have little hacks like this to get extra calories in, but most meal replacement powders come flavored towards the sweet side. I don’t want sweet at dinner. I have a vanilla chai powder that I love, but I don’t love it for dinner. Huel’s “un” option as I call it allows for adding it to savory dishes. 

For example, last night I had a minestrone soup for dinner. I mixed the Huel with a little water, then added it to the soup. It then turns the soup into a “cream of” sort of texture. I added some seasonings and nutritional yeast bring the flavor profile up a bit. So far it’s been in good in everything I’ve concocted. 

The price point is a little startling, at first, but since I don’t use a full serving (2 scoops/400calories) often, it will last me awhile. Additionally, at the end of the day I would rather spend my money on good products, of all varieties, that help my health and quality of life, while being simple and easy to manage. Anything that makes things easier is always a win!

We gotta take care of ourselves. #1 priority. 

Persevere. Rock on. 

πŸ’‹πŸ€˜πŸΌ

Wednesday, October 7, 2020

Wardrobe Battles

Happy Hump Day, my Slayers & Slayer Lovers! Going everyone is well! 


Fourteen years. That’s possibly a conservative guesstimate, too. Fourteen years is the length of time that clothing/fashion/wardrobe have been an ongoing challenge. A maddening, infuriating, cash sucking, meltdown inducing, pain in the ass challenge. It makes me high maintenance in an area where I want to be anything but!


As Scleroderma symptoms have waxed and waned. As Scleroderma has altered my physical being and added new challenges - my wardrobe sometimes, oftentimes, has to adapt. Just when I think I’ve nailed an item, it seems my body changes and that style of item is no longer functional.  


Additionally, as Scleroderma has changed my physique, the more androgynous characteristics have come fully front and center. Any glimpse of myself in a mirror and I see my father, in his unhealthiest form. I don’t spend any time in front of the mirror nor do I take selfies often for this reason. 


I don’t dwell on it. I don’t lose sleep over it. It doesn’t plague my self esteem. I just don’t like what I see, so I don’t look. 


Recently I’ve started purging clothes again, as the tank tops I live in are a struggle when I have elbow sores or my shoulders are hurting. They also put my skeletal upper body on display. When I was healthy and had awesome shoulders, biceps, and traps, I was proud of that work. Now, there’s not a muscle to be found.  You can’t miss my collar bones, the joints in my shoulder, my shoulders blades, my vertebrae. It all just sticks out. 


So, newer functional shirts that will still be cool and airy in the Florida heat AND hide the things I don’t want on display were in order. 


I got lucky! 


The first time I tried this shirt on, I cried. Cried, y’all! Happy tears for once. Over a shirt. This shirt gives me all the feels.

The sleeves and flowiness of it make it an airy, cool replacement for tank tops. It’s stretchiness makes it easier to get in and out of. In the winter I can layer it over long sleeve tees or under a cardigan some bigger sweaters I have. I can dress it down around the house. I can pair it with a skirt or dressy pants with accessories and dress it up. 


It disguises my skeleton frame. It didn’t make me want turn away. I didn’t see my dad. It made me feel recognizable as a female. 


I’m confident clothing is a big struggle for a lot of folks in our tribe. It’s a struggle for a lot of people in general. I’m sorry. I wish THIS was not something that we struggle with. I’ve learned to put a positive spin on the constant changes to my wardrobe and instead of getting upset over the “wasted money”, I get joy in knowing that I’m helping struggling woman - as the things I get rid of get donated to women’s shelters or veterans organizations. 


So, this week, I’m happy for this new clothing find. It is EVERYthing I need in a piece of clothing right now. I will likely buy it in every color. I’m a simple girl like that. 


Persevere. Rock on. 


πŸ’‹πŸ€˜πŸΌ