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