Thursday, April 8, 2021

Now It’s the Future

Hello friends! I’ve been drafting this post for months. Possibly close to a year. I just haven’t known how to get the feelings and sentiment to flow cohesively. I’m still not sure they will, but I’m at least going to try.

Some of this will be not new information for those of you that have been long-time followers. For others, it will be a history lesson of sorts.

After my first eight years with Scleroderma being lead by up to 23 pills a day plus various other treatments like immuno-ablative chemotherapy and still experiencing progression, I decided to try a new approach. Though these treatments most definitely saved my life, on the whole, I was still not as well as I’d hoped to be. 

For about a decade now I’ve been doing my best to manage my health and life with Scleroderma with as little use of pharmaceuticals as possible. Through diet and lifestyle changes I’m down to three pharmaceuticals for managing my heart and my thyroid. I had to resort to pain-killers in 2020 when an unusual run of ulcers occurred. Considering where I've been - I’m OK with all of this. 

This path makes my heart and conscience happy as to how I’m taking care of my body. I didn’t know then what I know now about the issues that can arise down the road as a result of the treatments that kept me moving and kept me alive. Even when I did “know” then, I was young and the tools and resources available today were not available then. To be honest when you’re in your twenties and being told you likely won’t survive a year, it can be quite easy to gloss over the things that might come in the future because you’re too worried about surviving so you CAN have a future.

Well, now we’re years down the road from then and dealing with “consequences”. Years of Prednisone, Nexium, and the chemo therapy have zapped my bone density. I’m soon to be 44 with the spine and hips of someone in their 80s and 90s. I’ve tried to be rigorous with diet and weight-bearing activities to regain bone health, but I’m just not there. So, to hopefully bridge the gap, still hoping I can eventually get there naturally, I’ve accepted that I will need pharmaceutical help. I’ve done my homework. At this stage and age, I’ve educated myself on what can happen with these types of medications. This decision has not been made lightly.

Today I received the call from my primary care doctor’s office to schedule my first injection. The emotion and feeling of defeat and surrender that comes with accepting that decision resurfaced and the finality of making the appointment fueled a conversation with a friend. We talked about how past treatments got me here and needing other treatments that I don’t necessarily want and where that will lead in the future. During the conversation she said the words that this post needed to finally bring it to life…

 “Trading present for the future. Back then 
 chemo was what was needed. Future issues 
 were in the future. Now it’s the future.”

As I’ve been holding off on this treatment as long as possible and reflecting on the past treatments, I’ve frequently come back to the list of side effects that can come from that past use of chemotherapy…. On the forms you confirm that these side effects have been disclosed to you …  These can include:
* Infertility
* Cataracts,
* Sexual side effects and early menopause
* Thyroid problems
* Lung or bone damage
* Cancer

The choices we’ve had to make to survive don’t necessarily make things all rosy with unicorns peeing rainbows and shitting glitter. Instead we’re left with any number of the list above. Another Scleroderma friend underwent a stem-cell transplant years ago and while it saved her life, she’s now fighting lung cancer. It’s giving her a run for her money and she’s been faced, yet again, with the gut wrenching decision of “what to do?”



That’s where we’re often left  … “What do I do?” For each of us that will be different. For us all, It will never be easy. We’re trying to live in the moment and not to worry about the future until it happens. 

And then “Now it’s the future.”



We do our best with what we have as we try to persevere. As we try to rock on.

πŸ’‹πŸ€˜πŸΌ




Tuesday, March 30, 2021

Do The Work + Scleroderma Hacks

My Slayers & Slayer Lovers!

It’s been a minute since I’ve posted anything of substance. To be honest, I’m just not feeling it lately. I’m frustrated. I get a lot of private messages, which I am happy to answer! Yet, lately they’ve just kind of deflated me. Friends. There is no quick fix for Scleroderma, or life with dis-ease of any sort for that fact. I can’t tell you that there’s one thing that has made my life with Scleroderma what it is. There’s no pill. The doctors didn’t prescribe the perfect cocktail of drugs to get me here. Yes, drugs have helped me in certain ways in the past, but, the side-effects or other issues brought about because of drugs made them not the perfect solution for me. 

How am I HERE? Where I’m at in this juncture of my life? Living on a hobby farm. Alone. How did I get here? I took responsibility. I did the work. I do the research. I made the diet changes. I do the yoga. I move my body. I don’t stop looking for alternatives or hacks until I decide that the effort outweighs the return or starts robbing my joy.  All of those things have been a part of my journey. Those have all been ingredients for my success. 

Now. Don’t think for a second that I’ve got this down perfect. I have bad days. I fall off the diet wagon. Then, if I pay attention, my body will give me little cues that I faltered. If I listen, I’ll right the ship before it goes too far off course. If I choose to ignore the signs, I will be reminded rather “loudly” by my body. Then I have to take ownership and on my own shit and take care of the things I have control over. Guess what? There are things I can’t control and there’s plenty that I can.

I don’t have a quick fix for anyone. I can’t and won’t recommend a drug, a treatment, or a doctor to solve all of someone’s ailments. If that’s what you’re looking for, you’ve come to the wrong page and wrong person. 

If you want to talk about food, exercise, and any and all alternatives or hacks so that you can have the best quality of life - you’ve come to the right place!

With that being said... here are some new hacks. All products are in an Amazon list for you all to have one stop - Scleroderma Hacks Amazon List

Persevere. Rock on!

πŸ’‹πŸ€˜πŸΌ







Monday, January 11, 2021

Returning to Life

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

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

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

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

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

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

Persevere. Rock on!

πŸ’‹πŸ€˜πŸΌ




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.