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 

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!


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. 


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. 


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. 


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.


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.

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. 


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.

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.

Persevere. Rock on!


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