Thursday, December 10, 2020

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. 

πŸ’‹πŸ€˜πŸΌ

abc
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. 

Tuesday, December 1, 2020

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. 

πŸ’‹πŸ€˜πŸΌ

♾♾♾♾♾♾♾♾♾♾♾♾
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!

πŸ’‹πŸ€˜πŸΌ

♾♾♾♾♾♾♾♾♾♾♾♾
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. 🀘🏼




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

Monday, September 28, 2020

Shoulder Issues, Anyone?

Happy Monday, my Slayers and Slayer Lovers!

This may be news to some or maybe it’s not. Either way, it’s something I stumbled across during some research and it made sense. Real sense. Logical sense. Yet, I don’t recall ever having these conversations with my doctors. 

I’ve had shoulder issues for what seems like forever now. Specifically my right shoulder. At times the pain is excruciating. Other times not so bad. In either case my range of motion has been limited for years, as a result. 

Yoga and massage are the biggest help for me. In our recent work at Yoga for Scleroderma one of the number one things folks want help with is shoulders. 

So, clearly, it’s a widespread issue. I was aware of this before, but recently it’s become very obvious. Until today, I had chalked it up to the fact that when we get tight and we’re not moving; when our arms are drawn inward towards our bodies from the skin and tending tightening; when we spend a majority of the day “curled inward” because it’s where we find comfort in our pain filled bodies ... I had just logically imagined that things start to “fuse” that way. 

In this article I stumbled on about a condition where calcium deposits are specific to the shoulder, the lightbulb immediately came on ...

..... “Others may find that they’re unable to move their arm, or even sleep, because of how severe the pain is.

If you do feel pain, it’s likely to be in the front or back of your shoulder and into your arm. It may come on suddenly or build up gradually.

That’s because the calcium deposit goes through three stages. The last stage, known as resorption, is considered to be the most painful. After the calcium deposit has fully formed, your body begins to reabsorb the buildup.”

THIS is exactly what I experience when my shoulder is flaring. Exactly. The next piece that struck a cord with me was ...

... “Calcific tendonitis does eventually disappear on its own, but it can lead to complications if left untreated. This includes rotator cuff tears and frozen shoulder (adhesive capsulitis).”

This struck a cord with me, because, my logic tells me, that the reason so many continue to experience issues is because we’ve never been properly treated and we end up with tears or frozen shoulder. Often times our other more serious complications are managed and things like our shoulders and our feet take a backseat and long term, sometimes irreversible, damage occurs. 

I’m by no means a doctor and can’t be 100% certain, but this is what my logic tells me. Just more proof to advocate for ourselves. Keep pushing for answers. 

And definitely “keep those Scleroderma bodies moving”.

Persevere. Rock on. 

πŸ’‹πŸ€˜πŸΌ

Tuesday, September 15, 2020

QUITTING IS FOR WINNERS! - It’s Not Failure. Its Not Giving Up. It’s Acceptance, Letting Go & Moving On

In this day and age where someone is in our face all the time, pushing us to keep fighting, don’t give up, you have to go all in if you’re going to be a success, and don’t you dare quit ... I call bullshit. Bull. Shit. 

That may work for some people. It’s NOT for everyone. And just because you’re not logging miles or hours at some fitness activity, eating every calorie like a rabbit, living zen 24/7, maintaining a spotless life, or nailing some extracurricular activity does NOT mean you are a quitter, you’ve failed, OR that you’ve given up - at least not in the connotation that those phrases are typically used.  


First and foremost, let’s remember that, if you’re reading this, you likely have Scleroderma. Or some chronic illness.  This immediately changes the playing field. You are working with a body that may be at a disadvantage from the get-go of this conversation. Most coaches and influencers are not. If they are, GREAT, I applaud them, and yet, we are all working from different abilities, so, we can NOT compare our progress, success, or “failures” to theirs. We shouldn’t anyway, but it’s a fact of life that we often do. So, I will repeat that for the folks in the back ... stop comparing your progress, successes, and “failures” to anyone else. 


Now, though I’ve said we are possibly working from a disadvantage does NOT mean that we should throw our hands in the air and just give up. We should not allow our Scleroderma/chronic illness and in turn disadvantages to paint us as victims. We might have disadvantages, but playing victim to them does us no good either. 


A few things stand true across the board: 

1)we need to eat a healthy diet 

2)we need to move our bodies

3)we need to de-stress

4)we need to practice self love and self care


Does that mean we can’t have a dessert occasionally? No. Does that mean we need to run for at least 30 minutes a day? No. Does that mean we don’t get pissed off from time to time? No. Does that mean we get bubble bath time every evening? No.


A few OTHER things that stand true across the board:

1)life happens

2)we age

3)our bodies change and/or dis-ease can happen

4)nothing is constant and lasts forever


Keeping those last four points in mind, even just from the standpoint of a healthy body ... what we could once do, may not be something we can maintain ten years down the road. Maybe our bodies have changed. Maybe our minds have changed. Maybe an activity that once felt good physically, no longer does. Maybe an activity that once felt good mentally, now brings dread or anxiety. 


Now, keeping those four points in mind, maybe, we’ve developed a dis-ease that has altered us physically, mentally, or BOTH. Maybe, due to that, activities that once made our bodies feel good, no longer do. Maybe, due to that, activities that once brought us mental peace are now physically challenging and only bring pain and anxiety. 


Healthy. Dis-ease. Advantaged. Disadvantaged. The second four will ring true for us all. There’s no way around it. The key is to acknowledge the changes. Feel the emotions that come with them. Feel loss. Grieve that loss. Be sad. Be angry. Experience it all.


Then, accept that things are different.  Don’t see it as a failure. Don’t focus on what you can no longer do or “have”.  


Find a new way. Find a new “thing” or activity. Maybe less intense. Maybe nothing to do with the original at all. Variations. Try. Adapt. Say “this” just isn’t working and try something new. 


Admitting and accepting that we can’t do things we once did, doesn’t mean we quit or that we’ve failed. It means we’re letting go and moving on. Just because we CAN do hard things doesn’t mean we HAVE to do everything that’s hard. Letting go and moving on is going to be FAR better for our health, physical AND mental, than getting stuck being a victim behind what we could once do. 


Doing all of these, then allows us to get back to the first four more fluidly and authentically. 


I got a horse. She was meant to be my therapy. I planned to ride her. Riding is no longer a safe option for me. Guess what? I STILL have a horse. She is STILL therapy, just in new ways. 


I used to hike. I used to enjoy long nature walks. Today, my feet hurt in ways that can’t really be fixed, so, I’m planning to start “vanlife” where I can camp, be in nature and not on my feet for hours.


I used to work out at a gym. My hands and feet make that a challenge.  I’ve created tools and found variations to still move my body. Yoga. I can do on my feet, on the floor, in a chair, or on my bed. Resistance bands and “pedals” allow me to keep moving from a chair or my sofa. 


I used to create glass art. I used to make jewelry. I used to make handmade holiday cards. I used to scrapbook. I had tools to make these hobbies easier, but eventually the activities brought me more anxiety than joy, so I opted to accept that and move on.  I donated my paper art supplies to a library kids program. I gave all of my jewelry supplies to a friend. I am giving all of my glass and tools to a new student at the glass shop. Passing these on to new folks so they can see new life feels good. It’s helping to foster someone else’s creativity. I’ve discovered that some of the paper crafts can be done “digitally” allowing my creativity to still flow. I’ve accepted that glass art and jewelry making are no longer in my abilities. Jewelry is now purchased from Etsy or when I travel. Glass art is purchased from local artisans when I travel, too - someone is always making beautiful things, I’m happy to support them, to be supporting a small business and again, fostering someone else’s creativity. 


I’m a hobby photographer. When my camera equipment became cumbersome and dreadful I was angry. I was heartbroken. Then, after some time, I decided that it’s not about the equipment that I use, but how I see the world. Ansel Adams was a great photographer, with “archaic” equipment. I gave my equipment away and now I shoot strictly from my iPhone. 



My list goes on. Most of it is chronicled here, or on my social media accounts. Once I either find a variation or flat out drop the activity, accept it and let it go, my stress reduces and the future looks better. Have I quit some things? Yep. Have I given up some things? Yep. But let’s not look at it from that lens. Instead, let’s see it as accepting, letting go, and moving on. 

This, after all, is how we persevere. How we rock on.


πŸ’‹πŸ€˜πŸΌ


Monday, September 14, 2020

No More Fitted Sheets - Sclero Hack

No muss, no fuss, no struggle bed making. Use a sleeping bag!

It’s not “Better Homes & Gardens” and yet, since I switched to this a few nights ago, life has improved a smidge in a couple areas. 

First, I move a lot in the night. I use the restroom at least once. Because of these I lose my blankets and have to get up to retrieve them or to remake the bed. As I result of this, I’ve added a heated mattress pad to the bed so I stay warm and don’t have Raynaud’s at night. 

Second, when my hands are sore just gripping blankets in general hurts. Making the bed throughout the night ANDin the morning is a chore. Let’s not talk about washing the linens and dealing with fitted sheets. 

So. I bought a sleeping bag. I’ve removed the heated mattress pad, the fitted sheet, and the blanket. Now I just have the comforter/bed spread on the bed and the sleeping bag on top. 

As I sleep in the sleeping bag, it moves with me. I keep the bottom and a smidge of the side zipped so it stays together. I stay warm. I stay covered. I’ve slept really well 2/3 of the nights I’ve been using it. 

When I get up in the morning I just spin it around to act as a blanket on the foot of the bed. Surprisingly, this is a great shift in the mood to start the day better - making the bed sets the tone and makes me feel like I’m starting off with my shit together.  https://drive.google.com/uc?export=view&id=141COOdOdJieEPY0I4lhcTckWSfC2vUDu

The care is super easy. It’s machine washable. Wash. Dry. Put back on the bed. 

Boom. Done.

It’s the little things. 

Persevere. Rock on. 

πŸ’‹πŸ€˜πŸΌ

Wednesday, September 2, 2020

COMING SOON - Podcast Channel

In 2010 I took the reigns and started “leading” my own healthcare. In doing so, I’ve seen the most improvement in my health. Is it perfect? Absofreakinlutely not! Do things like ulcers still occur and “rule my life” for periods of time? Sure as shit, they do. I’ve come to accept that ulcers may likely be the one thing I continue to struggle with. These are the result of skin breakdown just by virtue of how I use my hands. The skin has forever been changed in some places and the possibility for ulcers will always be there. 

It’s not ideal, but in the grand scheme of Scleroderma, they’re “the lesser of evils”. Which is a little Alanis Morissette “Ironic” because they are the worst pain and most debilitating thing I’ve dealt with AND YET theylre not “killing” me like my heart issues and ILD have actively worked to in the past. 

I’ve also continued to struggle with gut/diet/malnutrition issues. That’s a complicated cycle that is largely a result of me not being hungry coupled with hating the kitchen. The last year has been a rollercoaster of trial and error in trying to get that under control. I think I’m finally there. “Think”. Fingers crossed. 

A lot goes into managing health and combating illness. As an individual with chronic illnesses, this can becoming daunting fulltime jobs for us. How we each manage that will have variances. At the core, though, healthy food, movement, proper rest, and stress management are beneficial - across the board. 

Stress management has been key for me. It was the last piece to tie all of my other efforts together. The “cherry on top”, if you will. Lifestyle changes were the biggest in achieving this. Followed by yoga (which helps my body, mind AND stress) and meditation. 

I’ve shared and promoted mostly the physical aspects of yoga in recent years with Yoga for Scleroderma as it’s a great way to keep a Scleroderma body moving. As we’ve been spending a majority of 2020 in our homes and not able able to take yoga to the masses, we’ve started focusing on the meditation/stress reduction/deep relaxation side of yoga by hosting guided relaxations via Zoom twice a day every Wednesday. 

https://drive.google.com/uc?export=view&id=1_NUKlTuUmd---oGiim2faJXAqIZiKR0y

https://drive.google.com/uc?export=view&id=1d--zh6e3MynyzaVX_RBQQtfuV2n2tJ7B

This is a free offering. As all of our offerings are. We offer these services to benefit the community. Internet isn’t even required, you can dial in from any phone line. You don’t have to be on video. 

If you’re interested in taking 30 minutes to get some guided relaxation and distressing in your routine, head over to the events section of our FB page. If one of those times isn’t convenient for you, reach out to us, we may be able to set up more Wednesday sessions as the need arises. 

Additionally, starting this month we’ll be releasing weekly recorded sessions on our new podcast channel. Details will be on our page soon.

https://drive.google.com/uc?export=view&id=1hg_QxeqdGpPESPJVATxsdTgltvNG8Gv1

Persevere. Rock on!

πŸ’‹πŸ€˜πŸΌ

P.S. breathwork helped improve my lung function after 17 years. Keep an eye out for those on the podcast.


Friday, August 14, 2020

Sometimes I Just Exist

Happy Friday, my Slayers & Slayer Lovers!
I have been receiving messages asking how I’m doing as I’ve not written in awhile, so here’s a little message for you all. 

First, thank you for checking in! I greatly appreciate it. It means a lot when people check in on me from time to time.

https://drive.google.com/uc?export=view&id=1I5tkmo1A6bFyauuoEYnVeafBgwXTq19R

Now - to answer the question, “how am I doing?“… There’s a lot to that and yet I’m going to keep it as simple as possible .. because… Quite frankly I’m tired. I’m exhausted. I don’t have the mental energy to write much. I’m not tired in the “I need sleep” kind of way. Though that always is a part of having an auto immune condition - in this case it’s more that I’m just tired of constantly battling “something”. 

https://drive.google.com/uc?export=view&id=1jJSGq48nIPcyeAevh3OgxRsMdVP2Dlyw

Aside from not eating enough and the issues that go with that, my organs are all stable and that portion of scleroderma is OK. 

However, we are now at day 227 of  the year 2020 and I have had at least one ulcer,, (as many as four at once) every day this entire year. Even back into 2019. So over 230 days with some version of a painful sore on my body. First that was a toe, then a finger, then multiple fingers. Those all got better as I developed one on my heel. Now one on my thumb, and in the last couple of weeks one on each elbow.

https://drive.google.com/uc?export=view&id=11J2zE4B4QWX16P8_JHnM-CM7uakg9aKN

That’s a lot. There’s some level of acute pain at some point during every day. Movement and mobility become limited. Every movement becomes a calculated equation. It has worn on me. In addition, my feet hurt on a daily basis anyway because of the scleroderma issues that can affect feet. 
https://drive.google.com/uc?export=view&id=1CJQnul6Ng9NrotGxZuTiAW2wwd2oHmkE

So essentially I’m just existing right now. Which is why I have not written anything, because I don’t have anything going on. Mentally I’ve just not had the bandwidth to write anything worth sharing. Mix it all together and I’m just kind of “blah”.

Nothing to be alarmed about, it’s just the product of “what is” right now. 

Now, there are a couple silver linings to these clouds. The silver lining of 2020 and being on lockdown has been that not traveling has actually been a blessing. Dealing with pain and ulcers on traveling would have been a nightmare. 

Because of the pandemic Yoga for Scleroderma has been doing a lot of Zoom projects. We have been able to continue to serve the community. We have  developed “Wind-down Wednesday” - a weekly Guided Relaxation and we’ll be starting a podcast where I’ll be leading guided relaxation sessions. 

So I guess those are the silver linings of the COVID pandemic.

Within the next couple of months I will be unveiling a new mobility “tool” that I will be testing out. I don’t want to give any details about it until I’ve had the proper time to test it. However, if this tool works the way that I believe it will, it will be a game changer for me in being able to once again be more active and on my feet with less pain. I see this as a probable game changer for the rest of the Scleroderma community, as well. STAY TUNED!

The last silver lining is a little more funny… Because we know I have to laugh about things when I can… In being under weight, the upside is that when you can’t take your tank top off because you can’t raise your arms high enough due to painful ulcers on your elbows, if you’re super skinny you can slide the tank top down and step out of it. So there’s that silver lining, too. 
https://drive.google.com/uc?export=view&id=1c_-biqjzNnCRhUwBQJ-fhQgivGGxj8B9

In the grand scheme of things I’m doing OK. I’m just tired of everything always being painful or difficult… As is always the case, things will get better and the outlook will improve. But this is where I’m at today.

Just doing what I can to persevere, so that I can rock on in the future.

πŸ’‹πŸ€˜πŸΌ

Monday, June 8, 2020

Can We Get a “Pass”?

Happy Monday, My Slayers & Slayer Lovers! It’s been a “Monday” already!

I was planning to post something meaningful or a hack today, instead, I’m going to go with ”life on the farm” and the funny that comes out of that. 

I’m a firm believer that if one is saddled with a load to carry throughout life, like living with a chronic illness, that they/we should then be given a “pass” on a bunch of the other “stuff”. Don’t we already have enough to manage? Can’t we get a break in some other areas?

For example, we should not ever have to experience “the Mondays”. ESPECIALLY if we are not working or are in isolation of any degree. If all of our days sort of run together, if you will, there should be no “The Mondays”. There just shouldn’t. 

And yet, today, I had one. In a big way. In the first 30 minutes of being upright. 

Let me just first say that the weather in Florida went from being lovely (for all of three days) to now being a hot sticky sweaty teenage boy’s locker room. At 0800. 

I go to feed the horses and walk forehead first into a spiderweb. That in and of itself isn’t so horrible, except that a)I’m sweaty and sticky so the web doesn’t come off easily b)having shaved my head, the fuzz holds onto said spider web quite well, so I just kept getting tickled by the damn thing. 

After my paddock dance and rub down, not five minutes later, when feeding hay, I stepped in a fire ant mound. We use slow feeder hay bags and the last one I was filling was not opening easily. I was fighting to get it open when all of a sudden fire on my foot and ankle to which I yell (think Forrest Gump) “OOOOOWWWWW SOMETHING IS BITING ME!” ... while still trying to put the hay in the hay bag, dancing around trying to get 20 fire ants off my foot without stepping in more. I ended up just tossing the hay in the hay in the stall and got the ants off my foot. Got the rest of my wits back about me and, as much as I try to co-exist with nature, unapologetically, I broke up the mound they built overnight in some wet hay left after yesterday’s rain. 

Fire ants & mosquitos are two critters I have zero tolerance to co-exist with. Forgive me Buddha, The Universe, whatever. 

You can laugh at the images of me dancing with spiderwebs and trying to manage bites, but being too stubborn to just throw the hay. You can really laugh at the conversation that ensued when I reached out to my friend for her fire ant bite home remedy ... “I have never in my life put meat tenderizer on literally anything except myself” πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚

A single bite can make whole foot swell up. So, it’s a good thing I have class and “geek work” to do today, because I’ll be inside unable to wear a shoe. 

Persevere. Rock on!

πŸ’‹πŸ€˜πŸΌ

(Foot pic is 15 minutes after the incident. Now the red spot on my ankle is at least twice that size.)

   


Friday, June 5, 2020

Go BIG and THEN go home

One of my favorite sayings in regards to my life is "go BIG and THEN go home" ... because thats just how things seem to work for me. Even when I have small things plans, it's not unusual for shit to spiral into something bigger and then when I make it through whatever it is, I HAVE to go home and rest, recuperate, and recover.

This will be no different. As of today, I have traveled to 49 of the 50 states. Alaska being the only one I'm missing. I've been putting it off because it will require significant planning to ensure I stay healthy and safe AND because I imagine it will be a once-in-a-lifetime trip - I'm going BIG and making sure I get as much of the experience as possible.

Thus far I had loosely planned to fly into one city, explore the state, and then fly home from another. Now that I have #roamingjoan in my life, the idea of flying anywhere just doesn't interest me. I've always loved to road trip and see everything there is to see along the way. That gets daunting and expensive when you are trying to cover a specific number of miles and/or reach a specific hotel on any given day. Camper travel opens the possibilities up SO much!

In 2022 I turn 45. What a great year to mark state #50 off my list? I've already given "the boss" my vacation notice that I will be taking the summer of 2022 off to make this trip happen.

I'm going BIG and THEN going home and resting, recuperating, and recovering.

Bat shit crazy? More than likely. Will it be easy? Absofreakinlutely NOT. Scleroderma slows me down in so many ways, every day. That doesn't mean I'm giving up on ALL of my dreams. Some, yes. Others, I adapt. I hack. I modify. I figure out how to make shit happen! Will there be days where camper life will be ALL I do? Sure will. That's why taking home on the road will be such a gift!

"Fight the good fight, to live the good life."

or ...

Persevere. Rock on.

πŸ’‹πŸ€˜πŸΌπŸ”

Thursday, June 4, 2020

BEST Rheumatologist EVER



I was damn lucky to live in Maryland at the time I developed symptoms of Scleroderma. Dr. Wigley saved my life.

I was diagnosed with Hashimoto's at 19 or 20 after an almost 2 year fight with military doctors.

Though reluctant, I went to see my PCP when I started experiencing Raynaud's a few years later. I was lucky that he knew to run some tests to look for "some extra things". From those tests he knew something was up, and admitted he didn't have the necessary experience or knowledge, but knew I needed to see a Rheumatologist.

That Rheumatologist diagnosed with me Scleroderma in my first visit and also admitted he had no experience with the disease, but he "knew the best doctor in the world for Scleroderma" and sent me to The Johns Hopkins Scleroderma Center to see Dr. Wigley.

I hit pay dirt. Dr. Wigley has been such a great leader for my medical team. Always honest. Always open and willing to work with me if I had questions or ideas that were outside of the norm.

When I moved to Florida in 2010 I continued to travel back to MD to see Dr. Wigley, but looked for a rheumatologist closer to home as the travel at times was daunting. Unfortunately, once you've been seen by "the best", nobody else ever seems to measure up. I never built the relationship or jived with anyone like I did Dr. Wigley.

Now that I have #roamingjoan and travel will become easier, I have decided to go back to Dr. Wigley. When I reached out to him via email this week he responded in less than an hour with "Great to here from you. Look forward to seeing you again. Right now the coronavirus has our clinics closed but may open in July. Contact to setup follow-up plans."

I love this man!

Persevere. Rock on!

πŸ’‹πŸ€˜πŸΌ

Thursday, April 30, 2020

The Unknowns and the Knowns

#tbt, my Slayers & Slayer Lovers!

December 1-20, 2004. High-dose Cyclophosphamide treatment that would hopefully halt my disease progression and extend my life beyond the projected one year I was looking at. No percentage rates for success. It was a study treatment. There was also the possibility of death. Catching any bug during the process could be fatal. I was advised to put my affairs in order. It made sense either way. I made all the necessary plans - living will, will, good-bye letters. Thank goodness I never needed to use them.

Treatment began on December 1. I was isolated in a room for the first 5 days. Purell dispensers were mounted EVERYWHERE. Outside each room. Inside each room. I was able to be mask free in my room. Anyone entering had to be masked and use Purell upon entering the room. If I left to walk laps around the floor, I had to be masked. The only smell in the air was Purell.

On Dec 6, I was discharged from in hospital to go to “IPOP” a mix of in-patient/out-patient care. I came to the hospital every morning for vitals checks, various infusions, and monitoring. At the end of the day, I was able to go home.

Straight home. ZERO trips to any public place. Always masked in transit and at the hospital. Everything smelled of Purell. To include my home. My husband had gone to the extent of purchasing a Purell wall dispenser for our home - to help keep me safe.

Today’s current situation brings me back to that time quite regularly. As a result of the original treatment I have an aversion to any hand sanitizer that smells like Purell ... it makes me nauseous and quite honestly all hand sanitizers give my skin the heebie jeebies. I use them none-the-less - in an attempt to stay safe.

Since this whole health situation started I have been receiving a couple of messages a week from Slayers asking my thoughts on all of this.

I’m smart enough to say that I don’t have clear answers in regards to the political nature that this has taken on. No matter what was or wasn’t done, someone will bitch about it. Someone somewhere will always bitch even when hit with a golden stick. Either not enough precautions or too many precautions. A pandemic run amok or “they’re” trying to take away our freedoms. They didn’t protect us or they tried to control us. China was out to get us. The list goes on. And it will continue to evolve and take on new narratives as things unfold.

What I do know is THIS: 
 
  1. if the numbers from here are inflated, even by 50%, the facts at the end of the day are still that this is a world-wide health concern. Folks that are blessed with the luxury of healthy bodies and immune systems may not be concerned. They may only be carriers and never get sick. They may (and do) liken this to the flu. For them, that may very well be the case. For them, I am happy.
  2. Individuals with autoimmune, lung, and/or heart conditions do not fair well if they contract this. 
So, others may (and will) continue to cogitate (thank you, Kathy!) on the various conspiracies, overhype, or “the man’s” effort to put the people down. In doing so they seem to mock those that have compromised health and may even see them as expendable so that life can return to normal. So that people can go back to doing what they want with nobody telling them what to do.

That’s OK for them. They all have a place. Just not a place with me - not in this situation. For me, I will likely now look at things differently going forward. While I don’t like to live in fear, I will be living with a new hypersensitive caution. You see, this is much like that time back in 2004. The difference is that, then, I had a timeframe and the expectation of a new immune system. Though I’m mostly stable, now, I have more health issues than then and no timeline. This will be a new on-going concern for health compromised folks like myself.

It’s the same. It’s different. I’m smart enough to say that I don’t know. So, while I don’t know, I’m using the time to find new perspective and find a new balance in life going forward. I’m embracing the quiet, crawling life here at the farm - I DO pay a mortgage to live here and moved here for the peace and serenity after all. I’m also embracing the new uneasiness that I’m feeling surrounding travel now and using it as a catalyst to bite the bullet on life-long dreams of living periods of my life as a traveler - on the road in a camper.

I’m using this to find growth. To let things and people go in other directions. To be sad. To be angry. To be scared. To do nothing. To do new things. To try old things. To sleep. To heal. To educate. To learn. To guiltlessly veg with the television. To read. To plan.

Oh, the planning. Though tomorrow is NEVER guaranteed and we live for this day, we also plan for tomorrow. I’m planning for tomorrow’s that continue to be filled with giving back to this community. In old ways. In new ways. In ways that allow me to go where “the need is so great” ... while having roots and wings.

With ALL that being said ... my answer to the recurring questions is - I don’t necessarily know. Trust YOUR feelings. Acknowledge them. Feel them. Work with them. Let them help you. Then ...

Persevere. Rock on.
πŸ’‹πŸ€˜πŸΌ

Thursday, April 16, 2020

UNDER CONSTRUCTION

This blog is being updated over the next week or so. Backdated posts will be added from Facebook posts to allow for folks that don't have social media accounts to follow along.

Please be patient!