“Settling” Doesn’t Have to Be a Bad Thing

“You can do anything you set your mind to.” 

That is toxic positivity. A phrase I used to use and will never again utter to anyone. The idea that if you work hard enough, study hard enough, plan well enough, you can do anything. That’s just not the case for everyone. Period. 

Yes, there are plenty of people that have pulled themselves out of the gutter to attain a career or lifestyle they wanted. There are individuals that have come through debilitating injuries in order to do a “thing”. Yes, it CAN happen. For some. Not for everyone. 

AND THAT’S OK! 

This is where radical acceptance comes into play.  “Radical acceptance is when you stop fighting reality, stop responding with impulsive or destructive behaviors when things aren't going the way you want them to, and let go of bitterness that may be keeping you trapped in a cycle of suffering” or “completely and totally accepting with our mind, body and spirit that we cannot currently change the present facts, even if we do not like them.”

Some see it as giving up or settling. The key here is the suffering portion. We’re going to have a certain amount of suffering in our lives, it’s inevitable. However, if I can lessen my suffering by accepting the fact that some things just aren’t going to happen because my body or my brain just don’t work in that way, then why wouldn’t I? Sure, it’s going to suck. There will be some grieving that “loss”, but there are a myriad of other things that can be done to find joy and happiness. Maybe even find adaptations of that “thing” that I want and still find happiness in it. It doesn’t always have to be all or nothing. 

Scleroderma has altered my body in ways that make some things impossible. There’s just no way around that. No matter how hard I try. Some things just aren’t functional. Some things aren’t safe. 

Though I never need to, in my yoga practice, I’m never going to do a hand stand or put my foot behind my head. It’s just not going to happen no matter how much I “put my mind to it”. No matter how many props I try or modifications I come up, neither of those forms work for this body. AND THAT’S OK! There’s so much more to yoga that I’m not missing out by not getting into those postures. My practice still brings so much to my life. 

Riding my horse is not safe for me with the severe osteoporosis. I “could” ride, but even the best riders have mishaps. Horses get spooked, riders make mistakes, etc. Having horses has become about the relationship, the love, the activity of their care, and riding is no longer important. 

Skydiving? No longer going to happen. Paragliding? Maybe. 

I would love to own a motorcycle. I’ve wanted one since I was a kid. It never happened and is not feasible. There’s just no way I can maneuver a motorcycle. So, I changed the perspective and added “riding a motorcycle” to the bucket list. Not the same as driving, but I imagined that the experience itself would get me the feeling I was looking for. 

I was right. Yesterday, I was able to check another item off the bucket list and spent the day riding a motorcycle with friends (one old, two new) around Daytona. During Bike Week. It was a wonderful day. Surrounded with people that helped me on and off (because that was a challenge!). They kept me safe. They made sure I was comfortable. All without me feeling like they were “trying too hard”. Their company was awesome. The weather was perfect. The bikes were beautiful. 

I wish days with this much joy, kindness, and friendship for you all.  

If Scleroderma (chronic illness, dis-ease, injury, etc) has changed your life and body to make some things no longer feasible, I’m sorry for that loss. It can be hard to let things go. I encourage you to grieve the loss, accept things for what they are, and shift your perspective to find new ways to enjoy this life to the fullest. I hope you can find that acceptance and “settling” can be beautiful and wonderful, too. 

Persevere. Rock on. 

💋🤘🏻

Self-Care Practices

Happy Twosday, my friends. 2/22/22. I love dates and times like this. I’m in the wonky sleep cycle these past few days, so, not  surprisingly I was awake at 2:22 this morning and I’ll be awake at 22:22 tonight. It’s how I roll.

I’m doing all of the things I can to manifest my own good health, wellness, and just a great life, in general, everyday. On special days like today, I try to be extra intentional in my thoughts to take full advantage - every little darn thing helps. It certainly doesn’t hurt!

With that in mind, I often get asked about all the self-care habits that I follow and how I came to them. 

Obviously, Scleroderma is the umbrella answer there. Living for eight years feeling like death more often than not was the catalyst that got me here. To be more specific, though, yoga is what has really lead me down the path I’m on. It’s not a cliche for me to say that yoga saved my life. Yoga is more than just pretty postures for the body. Actually, that’s one of the teeniest parts of yoga and far from the most important. Without going into a long dialogue that will bore many of you, the shortcut here is that yoga marries with Ayurveda, the “sister science” to yoga. Ayurveda and yoga have been around for thousands of years. We don’t typically do things for thousands of years if they don’t work. I’m not saying that in the “because it’s always been done that way” type of way, because I don’t blindly subscribe to that thought process. If something has been done for that length of time, it better be of benefit. Today there are plenty of scientific studies to validate the benefits of Ayurvedic practices. Additionally, for me, I’m apt to try things based in nature, that, again, at least do no harm. 

So that’s how I got here. I was tired of feeling like shit in my body and taking a bunch of drugs that might help, but, most caused more problems than they were helping. 

Now, what practices are part of this routine? Some are from Ayurveda, some are just little extra things that I know help the body function better. 

Here’s a list of activities I do daily …

Morning

-Tongue scraping

-dry brushing (face & arms)

-8 oz. lime water with the two meds I do take

-healthy tea (Mud/Wtr)

-yoga/eye exercises/breathwork/meditation

-spiritual/self-study reading

-journaling

Afternoon

-at least 30 minutes with the sun on my face & arms

-dance party

-I rest (usually napping) with my legs elevated for lymphatic drainage

Evening

-walk or cycle while I watch tv

-CBD

-sleepy tea

-oil pulling

-meditation

This is all, of course, in addition to a now vegan diet, cancer fighting supplements, and meal replacement shakes for extra calories.

Three days a week I also practice hyperthermia in the infrared sauna for almost 40 minutes at 131°. In the sauna there are chromotherapy lights (colored lights), 5 pounds of salt rocks for halotherapy, and essential oils diffusing. While in the sauna I Gua-sha my whole body with a rose quartz tool and I finish the last two minutes with “alternate nostril” breathwork. After the sauna when I’m done sweating, I dry brush my entire body before cleaning up/showering. 

Yep.  It’s a lot. Some days I don’t want to do “the things”. This is a time consuming process. It requires being intentional. Routine. Structure. Things I fought hard against for a period. I wanted to be carefree and spontaneous. I thought that’s what would make my life wonderful. Turns out though that feeling good in my body is what makes my life wonderful. Having a body that functions to allow me to do the things I love is the wonderful thing. 

This is how I get that. This is how I persevere and rock on.

💋🤘🏻

“Fighting” is Open to Interpretation

There are still a bunch of questions waiting to be answered, but this has been asked in the past month and multiple times in just the past week, so I feel compelled to offer some clarity. 

The question(s) have been related to the cancer diagnosis and/or treatment plan.  Basically, some folks have asked … “why aren’t you fighting?” or “why are you giving up now?”

At first these questions made me angry. So, I opted to sit with them for a bit to see why they angered me and so I could respond appropriately versus reacting through anger. 

Let me begin this answer by saying that “fighting” a disease or illness can be done in a variety of ways. “Fighting” is open to interpretation and THAT interpretation really lies within the person that actually has the disease or is doing the fighting. For one person fighting might mean trying every new drug or treatment offered by doctors. For another person fighting might mean utilizing Eastern medicine. For someone else fighting might be going all in on a diet and lifestyle change. For still another person fighting might mean creating a “toolbox” that pulls pieces from all of the above. 

Your version of fighting and my version of fighting might be two completely different methods. 

So, for those asking the above questions, the real question being asked is “why aren’t you doing surgery, radiation, chemo, etc. to fight this?” i.e., “why are you giving up?”

I am far from giving up, friends. 

Conventional methods to “fight” just aren’t going to work for me. Surgery isn’t an option because with the level of fibrosis in my lungs removing the lobe would obliterate my lung function. Radiation would compromise my lung function and my esophagus. Chemo would cause a litany of side effects, mostly affecting my diet and caloric intake. I’m already struggling to maintain 90 pounds, I don’t have muscle or fat reserves to sustain more weight loss. 

With that in mind, my tumor is Stage I and hasn’t grown in the three years since it was originally noted and mis-diagnosed. Last, though I’ve been diagnosed with cancer, I’m not sick. If nobody told me there was a tumor still attached to my lung, I wouldn’t know it was there. I live a really good life. A life that I manage by myself. The side-effects of the treatments would disrupt that. With no guarantee for success. 

There are plenty of folks living long, prosperous lives with cancer, even Stage IV. Like 19+ years. Some are now cancer free. Without surgery, radiation, and chemo. They’re still fighting. In different ways. 

So am I. I’ve spent countless hours reading research studies, books, personal accounts. I’ve been having heart-to-heart talks with myself. I’ve been sure to let go of some unhealthy habits that I was clinging to. I’ve overhauled my diet again and am now 95% vegan. I’ve spent hours figuring out how to tune in my nutrition and adding beneficial supplements. My yoga practice is more consistent and intentional. My meditation is more crucial. Journaling my emotions is a necessity. Adding in unconventional treatments that have shown promise even if they’re not mainstream yet. Planning life events is renewed. 

To be honest, this part, between the second diagnosis and now, has been exhausting. It’s been all-consuming. This is how it was when I did the diet and lifestyle change that got me through Scleroderma with more ease. Now, I’ve had to do it again. The plans that helped get me on track with that, interestingly, don’t all apply here. There have had to be some big shifts. Now that I have solid plans in place it should ease up a bit, but the “fighting” will continue. 

Many decisions, everyday for the past twelve years have been done from a fighting mode. Now the fight is just with an added opponent. I’ve not given up. I’m still fighting to persevere and rock on. All day. Every day. 

💋🤘🏻

I STILL Have Cancer

That didn’t go as planned. Not even close. 

I met with the oncologist Monday to discuss my PET scan results. While the surgery was successful in removing Neil, it appears that Neil was hiding his twin sister Nellie. Well, not only was Neil hiding her, but so was the fibrosis and calcinosis in/on/around my lungs. The surgery did exactly what it was intended to, with the information available and visible at the time. 

Even had Nellie not been hidden, she is actually in the pleural lining and would not have been able to be cut out like Neil. In order to surgically get rid of her, a lobectomy would be required. I’m not a candidate for that because of my lung function. At this stage in the game I’d also not entertain the idea of another surgery. While I’m recovering well, it was hard. My poor little body has been through SO much over the years. 

So. This is what we’re doing now. A treatment plan hasn’t been established yet. The appointment was late in the day, the oncologist wanted to consult with the pulmonologist, and I needed some time to process, research, and be ready to come back with the right questions. We meet again in a week.

I’ve cycled through the range of emotions that come with this. I’m exhausted from the rollercoaster of my health. Exhausted from rollercoaster of the last month, specifically. It has been a lot of sharp climbs and sudden drops and corkscrews. 

I’m on pretty even ground at the moment and just trying to educate myself and be ready to make the “right” decisions for the way forward. This is a Stage 1 tumor. I’m not in a place of “imminent danger” so there’s time to discuss ALL the possibilities.  There are some hard and fast “no’s” in regards to what I’ll subject this body to. Quality of life for the longest period of time is the ultimate goal. I really do Love This Life I live and strive to LIVE A GREAT STORY, so-to-speak, and that means actually LIVING my life, not sick from treatments and existing just to say I “fought”. 

This isn’t ideal, but it’s where I’m at. I can’t undo it, so I’ll just keep working to persevere and rock on. 

Now that I’ve shared all the details … I’m going ramble and take an opportunity make this a teaching moment. 

I’d like to talk a bit about the concept of “holding space” and “toxic positivity”. Holding space isn’t something that most of us are comfortable with. Holding space often leaves us feeling uncomfortable and fidgety. It’s a practice of real human growth. We’ve been taught to try to make everyone feel better, to offer solutions to any problem, to share our similar experiences, to do whatever it takes to bring about positivity - all examples of actual toxic positivity. 

I invite you to read over the attached graphics and consider these when offering support to anyone. I can almost guarantee it will be appreciated. 

Now, YOU go rock on.

Released by the Surgeon

My first autoimmune diagnosis was in 1997. Over the years I’ve had a variety of experiences with medical professionals. Mostly good, in the grand scheme of things. When push has come to shove and life-threatening situations have been handled, I’ve been beyond blessed to have doctors that I felt safe and comfortable putting my life in their hands. 

This cancer situation has been no exception. From Day 1 I have loved and felt very comfortable with the surgeon I was referred to. The man knows his stuff, is thorough, and has just the right mix of candor and wit perfect for my personality and approach to dealing with all of “this”.

Yesterday’s final appointment with him was no different. We had a more in depth conversation about the details of the surgery now that we’re “out the other side” and not still in the thick of it (in the hospital recovering and processing everything). We discussed how the original small incision turned into a bigger one. And a bigger one. And a bigger one. Three times bigger than he planned so he had room to navigate “all that scar tissue”. 

Then he told me how he removed part of my rib. … “hold up! Who-sie whatsit? You did WHAT?” …. “Don’t worry. It won’t affect how you’re held together.   It’s just that after all that cutting and knowing I needed to get into your body cavity, the rib spreaders would have broken your little ribs and that would be way more painful for you to heal from. I didn’t want to add to your struggles. So, now you’re missing this section of your rib” (pointing to the X-ray) … All I could do was laugh - “Ok. So THIS is what we’re doing now.”

He was very happy with my X-rays and how I’m healing. I expressed how I thought I’d be bouncing back faster than I have. While I’m doing GREAT, I still tire easily and my core gets exhausted and aches throughout the day. 

He was like … “you’re doing GREAT! I had to cut a three times larger hole in you than I expected. I took out part of your rib. I had my hands IN your body cavity. That’s MAJOR stuff for anyone. You’re this tiny thing. With other complications. Give yourself a break. … Now. I’m done with you. You’re released from my care and I hope to never see you again! *LOL*”

I’m good with that! One more down. ✔️

Oncologist is Monday. I likely won’t be as lucky there. Word is I have to have five years of clean scans before they consider me cured, so, I’m stuck with him for awhile. 

It’s all good. Life is good. Love this life. 

Persevere. Rock on.  💋🤘🏻

PET Scans & Emotions

Today, I headed to this appointment feeling confident, cocky, and a little cranky.  Ready to get this PET scan over and done with and move on with life. Definitely still cranky with all the shit I’ve allowed into my body in order to nip this whole cancer thing in the bud before it gets out of control, while knowing this was the least toxic route to go in that regards. With the thought process that my body will recover from surgery and I can detox from those medications more easily than the alternatives (radiation + chemo). I came in and sat in this chair with a clear head, full heart, and positivity abound that I’m almost across the finish line. This is the last test and I can up my detox regime and get things back on track. 

Then. Boom. Emotions. Tricky little buggers.  We’re all entitled to them. They’re all valid. They’re our own personal reactions to the things going on in our lives and around us. And sometimes they sneak up, out of nowhere and hit us like a f¥cking freight train. 

Here I am, once again sitting in the “toxic trailer”. I’ve been injected with the nasty juice and I’m sitting while it traverses through my veins and then I get to go take a nap while I’m in the tube. Not because they knock me out, but because I’m tired, and really, what else am I going to do for 30 minutes?

For whatever reason after the technician finished my injection and walked into the other room, an unexpected wave of emotions hit me. A flash of the big picture of what the last quarter of 2021 unfolded into for me. An acknowledgement, if you will, of ALL of it. And, a twinge of anxiety about the results of THIS PET scan. 

All unusual for me. Fool me once? Shame on …

Just a few months ago when I was sitting here I was cocky, confident, and cranky that the PET scan I was doing was unnecessary. Cocky that “I” knew better. Confident I “just” had Scleroderma scar tissue. Cranky that I was allowing myself to be filled with nasty things just to prove I was right. 

Well. We know how that turned out. So, I guess today, everything just hit and caused an unexpected cascade. I’m still optimistic and hopeful, but, I’d be lying if I didn’t admit that I’m not cocky or confident this go ‘round. 

AND I’ll STILL persevere and rock on while I wait for results. 

💋🤘🏼

Looking Forward

December 30, 2021

It’s been 15 days since Neil’s eviction. 

What a rollercoaster this year been. Especially the days surrounding the surgery. From “I should be able to do this with a scope - two small incisions. Worst case, because you are so small, maybe a three inch incision. You’ll get to leave the hospital on Day 4 - cancer free” to “I couldn’t get the tumor. I tried. The scar tissue was too bad.” to “pathology came back and what I took out WAS the tumor. It was just encapsulated in scar tissue, it didn’t present as the tumor initially AND the surrounding lymph nodes I took came back negative for cancer. WE GOT IT!” 

Four days? Nope. Nine. 

Two small incisions? Nope. 

A three inch incision? Nope. Seven inches and a “stab” wound, too. 

Shanked and shivved. You know - for that stint I did in prison. That’s what I’m going with. I’m tired of health stories. Let’s mix this one up. 

In all seriousness, it’s been an adventure. Once again, I’ve managed to kick ass. I’m home. I’m still healing. I’m healing well. AND I’m exhausted. Way more easily than I anticipated. I’m honoring what my body is telling me. I do what I can and rest the rest of the time. LOTS of chair yoga. Meditation. Journaling.  I’m surrounded with beautiful nature and the critters I love. 

One moment at a time. Persevering. Rocking on. Soft rock, maybe, but still doing this thing. 

Here’s to a quiet, yet well-lived 2022. 

💋🤘🏼

Neil IS Actually Dead.

December 22, 2021 - Good-bye Neil Hospital Log - Day 8

I’ve been sitting with some news since yesterday and didn’t want to post until I had a second confirmation from my pulmonologist. He came in earlier than normal this morning to tell me. So … 

NEIL IS DEAD!!! 

And the lymph nodes the surgeon removed around the tumor are all cancer free!!! 

Confused? I was. 

Here’s what happened…

During surgery, the surgeon took out a jawbreaker sized mass that he thought was the tumor, but it was hard to tell because of all the scar tissue. Everything was gnarled, entertwined, and nasty. Pathology inspected it on the spot and said “no it was just fibrous scar tissue.” 

The surgeon couldn’t find anything else except the huge golf-ball sized mass of scar tissue. Everyone then was assuming the tumor was encased in that.  He couldn’t remove that without removing the lobe of my lung. He tried. The scar tissue was just too thick. So, he closed up, feeling like he failed me.

 

He’s been depressed and sad because he felt horrible for cutting me open and having to put a tube in me - all for nothing. And that my future steps would be the dreaded radiation and chemo and I’ve already been through so much.  

 

Before coming to see me yesterday, he wanted to see what the real pathology tests showed. After further inspection and real testing, It turns out that the tumor WAS in the mass he removed AND that the lymph nodes he took out, came back negative for cancer. 

So, he got the tumor. I’ll need a PET scan to confirm. But 99.9% NEIL IS EVICTED AND DEAD. 

Read that again, if you need to. 

 

We cried. We hugged. He said he was celebrating with some wine last night. 

BEST CHRISTMAS PRESENT EVER!

Good-bye Neil, your free-loading days are over. You will not be missed. 

Today, I had an echo to see how my heart is holding up after surgery. 

The chest tube is scheduled to come out today and I should go home to my friend’s tomorrow for a few days before returning to my own home. 

*picture is my Cooper while playing at daycare today. I say he’s howling with joy.

Neil Wasn’t Evicted. I Still Have Cancer.

A little evening update for today. 

I’m still in the hospital. Likely to be here a few more days. Due to the scar tissue in my lung the surgical sight has not healed yet and I’m leaking a little air. Not ideal, but not a surprise, either. As a result they hooked Althea (yes, I named my suction box) back up to suction and here we are. I’ve also developed a little fluid in my lung. I probably didn’t help myself here - yesterday when they unhooked Althea from suction, I got lax in my breathing exercises. We’re both back on the job. Between Althea’s suction and my yogic breathing exercises, we’re going to get this squared away. 

My care continues to be top notch. Though this isn’t ideal, I’m in the best place to be for it to happen. My pain is well managed with meds every 8-9 hours. The nerve block has been a saving grace, for sure. 

I’ve been cycling through a whole myriad of emotions. As to be expected. I’m allowing myself time to sit with them all. Then it’s time to move on. 

At the end of each cycle I come back to Gratitude. I’m grateful for this body. This little body has been beaten, abused, and to hell and back from the list of autoimmune conditions she’s been saddled with AND the pharmaceuticals I’ve subjected her to. 

Through ALL of that, she continues to fight on. When in reality, she shouldn’t. In conversation with my pulmonologist yesterday, who’s very straight forward with zero bedside manner, I asked, “if my lungs are scarred SO badly AND I’m in congestive heart failure, how is that I still live the “active” life I do? How am I not on oxygen? Or worse?”

His answer, “I don’t say this often, but, luck. Something has been on your side to allow your lungs and heart to still keep you going in spite of everything going on. You’re an anomaly and I can’t logically answer that.”

Now. I’m not going to take all the glory here. Medicine has saved my life. There’s no doubt about that.  It has also caused some significant other side effects and complications.  At the end of the day, though, this little body has fought hard through diseases and poisons to get us to a point where I could change my perspective, and, in turn, my lifestyle, and recognize the force that she is and that I needed to make her a priority and that I needed to do all I could to help her, help me. Though she be tiny, she be fierce. She has persevered. 

So we’ve been doing this work. There are plenty of times she’s worked harder than me. I’ve not kept my priorities in check. We’ll get it right. We’ll get our shit together. I’m not delusional to think I will have an easy health journey and everything will be butterflies, rainbows and glitter-shitting unicorns, but I do believe we’ve got more chapters to write and more work to do. 

These bracelets came today and they’re perfect. 

We will continue to persevere and we’re going to rock the f¥ck on as long as we can. 

💋🤘🏼

Final Countdown

Just over 12 hours until Neil gets evicted. He received his final eviction notice today. Unless he miraculously is gone by tomorrow, we do this thing at 0845. 

As expected my emotions have been all over the map today. I’m in a “good” space now. Lots of intentional pauses, breath-work, and meditation for me through the day. 

And of course some laughter …

I’ve variations of this conversation over the years anytime there’s a procedure taking place. I had it twice in the last 48 hours. 

Nurse: Your last menstrual cycle was 2006?

Me: Yes. 

Nurse: you don’t have a period?

Me: No. 

Nurse: There’s no chance you’re pregnant?

Me:😳😳 Absolutely not. 

Nurse: Well we still have to do blood work because if your age. Just in case. 

Me: I get that you’re doing your job and following the guidelines, but if I’m pregnant, you can give your two weeks notice because I’m going to be making bank and I’ll cut you in. I had my tubes tied in 2003.  I went through chemo induced ovarian failure and menopause in 2006. I haven’t had sex since 2009. If I’m pregnant I’m going to be getting book deals, movie deals, you name it. But, I get it. You’re doing job. 

It makes me laugh. Every time. Seriously. I KNOW I’m not the only one. It’s not that uncommon these days for younger women to have lady bits that definitely are NOT making babies. 

Also, removing a nose ring with these nubbins took some creativity. Thank goodness I have just about every type of tweezers and forceps on the market to handle ALL the tasks not suited for nubbins. 😂🤣

Let’s do this!

Persevere. Rock on. 

💋🤘🏼

IT’S ON!

IT’S ON!

I had a final call with the surgeon’s coordinator to confirm that surgery is on for December 15th. Neil will be evicted. Good-bye, Neil. You have to die.

At this point I’m still just carrying on life as “normal” as much as possible.  I’m ready for this to be another part of my past. I’d be lying, though, if I didn’t admit that I am starting to have a little increased anxiety the past week or so as I’ve known the date is looming closer and closer. I’m not panic stricken, just very aware and in tune with all the complexities of my body in relation to surgery in general. 

Add on phrases like “I’ll deflate your lung” and “you’ll have a chest tube for three days”, neither of which are high on the list of things that sound fun to me. Lastly, while the plan is to go in and just remove the tumor via a “wedge resection”, there is also a possibility that it won’t be that simple. A lobectomy is actually what they would normally do in this instance, but because my lung function is already decreased due to fibrosis, the pulmonologist has requested this procedure because a lobectomy would decrease my function enough that I then would almost assuredly require daily oxygen use. 

THAT concern hovers in the back of mind most, I think. It wouldn’t be the end of the world and I would figure out how to make my life work even if that is the case, and yet, it’s just not an added complexity I’d like to add to my routine.

I’m very grateful and lucky to live in a day and age where I’ve survived Scleroderma for 19 years and now have a negative ANA and no Scl-70 markers. I’m grateful that the issues I deal with now, - ILD, heart failure, Raynaud’s, GERD, and the lingering fibrosis in my tendons and joints, are all manageable with lifestyle, diet and just a very few medications. I’m grateful for all of these things AND I’m still tired of managing my health. It’s still a full-time job. It’s manageable AND it’s a f¥cking LOT to manage. I’m not ready for oxygen. I’m not ready for “one more thing”. Cancer (though “easily resolved” in this case) is the last “one more thing” I want right now. We’ll, I absolutely don’t want this, but you get the idea. 

So, I will keep on keeping on. I’m putting my trust and faith that my surgeon will do everything in his power to keep this as minimally invasive as possible. I’m hoping that Neil has understood the eviction notice he’s been given and that he’ll go quietly. At the end of it all, it is what it is and I can’t do much else about it, so … as always, what do we do?

Persevere. Rock on.

💋🤘🏻

What is Healthy?

It’s a “funny” thing how my perspective has changed after 20+ years living with chronic illness. My measure of “healthy” for myself is vastly different than it was once-upon-a-time. 

These days, I feel “great”. Great is a word that can be different over time. Today’s great is in comparison to how shitty I have felt in the past. Today I feel great because I can get moving in the morning without tons of dread and tears. Today I feel great because my afternoon naps are down to thirty(ish) minutes most days. Today, I feel great because I can eat without nausea and vomiting at bedtime or 2 a.m.  Today I feel great because I can manage my day as long as I take the breaks I need between tasks. Today I feel great because my pain is not excruciating and debilitating. 

These feelings of “great” are all in comparison to a time when my life was completely the opposite. Getting out of bed was a challenge and some days almost impossible. Pain was pretty much all I knew. I would accomplish very little. My naps were long and sometimes many a day. Often times by bedtime I was completely nauseated and would frequently end up vomiting before I could fall asleep.

AND because of all of these wins in my current health journey allowing me to feel “great”, it’s sometimes easy to forget that I DO have Interstitial Lung Disease and I’m in Congestive Heart Failure. Let’s not forget I also have Neil the Neoplasm squatting in my chest and freeloading on my lung.

It’s easy to forget those things until the surgeon calls and reschedules Neil’s eviction date by two weeks because he wants me to see a heart failure specialist. Above and beyond the extra echocardiogram he has requested with my normal cardiologist. He’s erring on the side of caution to make sure my heart is strong enough to handle the stress of this surgery. 

For that I’m grateful. It has, however, been a less than cheerful reminder that I’m not as healthy as I kid myself into believing. Just another part of the journey. Making sure all of the ducks are in a row and that we can move forward. 

Fingers crossed everything can proceed and Neil will be evicted on December 15th. 

Until then, as always, what do we do?

Persevere. And rock on.

💋🤘🏻

Ain’t Nobody Got Time for Raynaud’s

This isn’t completely accurate, the sun was NOT shining when I did chores this morning, but it was 68°. 

I did morning chores in a long sleeve ”thermal” top with no gloves/mittens and I was completely comfortable.  My hands were cool to the touch, but no color change and no pain. 

Last year, I would have bundled up and still been crying by the time I finished. Last year,  anything below 80° and I was miserable. Miserable. I would rush through chores and then rush to sit in front of myinfrared light with tears in my eyes as I tried to warm back up. We won’t even go into the months of the most horrible ulcers I’ve EVER had - on my feet. Had it not been for the barn partner I had last year, I would have had to hire help. I couldn’t walk a lot of days. 

The difference? Over the summer I caved and started talking Sildenafil. We all know that I fight tooth and nail to manage my health with no pharmaceuticals when it’s possible. 

Raynaud’s and GERD are the two still ”active” Scleroderma issues that I continue to struggle with. They are the only issues that I’ve not been able to fully control with diet and lifestyle. The GERD issues I manage with natural treatments, but the Raynaud’s has continued to be the problem child and like I said, last year was the worst it has EVER been. And I live in FLORIDA!

Right now, as much I don’t like it, I’m also very grateful for the meds that are keeping me active and functional. 

Ain’t nobody got time for that. I’ve got shit to do! Like a tumor to evict and horses to gentle. 

Ain’t nobody got time for that.

Put It On My Tab

It’s been an interesting journey, navigating a lung cancer diagnosis after living with a chronic illness for 99% of my adult life. 

After the initial shock, I’m not affected by it now. Aside from being completely over the increase in medical appointments and the addition of members to medical team, I really am not emotional, stressed, or worried. 

Yes, “I have cancer” is one of my first thoughts in the morning. Yes, it creeps into my brain throughout the day. Yes, it’s “annoying” to now have one more thing to add a check next to, circle, and/or discuss with any healthcare individual I have appointments with. 

No, I’m not one bit excited about surgery. Who is? Initially I was freaked out about surgery, but having met my surgeon and his amazing team, I’m good. 

I have cancer. AND. I am not worried. I’m not stressed. I’m really not giving it much more thought than being aware that it’s there. Aside from a little occasional discomfort when I need to be adjusted by the chiropractor and knowing it’s there because of scans and testing, I would not have the slightest inkling I have Neil Neoplasm, the squatter living in my chest. 

I haven’t cried about it since the week of diagnosis. It’s not worth my negative or sad energy. it’s not worth the negative hormones. I think living all these years with repeated diagnoses that have come with Scleroderma and its treatments, in addition to the techniques and perspective shifts I’ve gained through yoga have given me the ability to accept this as “just one more thing” for me to “slay”. 

I have four horses, four cats, four chickens, and two dogs that I have made promises to. I have promised they would never be mistreated again and that they would live out their lives only being loved and cared for. I HAVE to see them through until it’s their time to cross over. 

I have a cross-country solo Jeep trip with a stop at Moab for Easter Jeep Safari to cross off my life list. That goal was set in motion when I was a kid and watched Terminator with my parents. I HAVE to see that through. 

I have to drive to Alaska. Aside from Hawaii, I’ve actually driven my own vehicle through the other states. Alaska is the ONE state left before I can check all 50 (plus Puerto Rico & the USVI) off my life list. I HAVE to see that through. 

My work with Yoga for Scleroderma is nowhere close to being complete. I still have advocacy and support efforts to share with the Scleroderma and chronic illness communities. I HAVE to see those through. 

Meh. I have cancer. “Put it on my tab.” I’m not done yet. I will continue to do the only things I know how to do …

Persevere. Rock on. 

💋🤘🏼

“Fight the good fight. Live the good life.” ~ Dr. Fred Wigley

~~~~~~~~~~~~~~~~~~~~~~~

The Plan to Kick Cancer’s Ass

First things first, because I find any humor I can AND I have some weird need to name everything - I haven’t yet shared on this page …

I’d like you to meet Neil Neoplasm. This is the tumor living in my chest. Neil is “squatting” on the outside lower lobe of my left lung, just below my shoulder blade. Much like Earl from the Dixie Chicks’ song “Goodbye Earl”, Neil “has to die”. (If this song is now stock in your head - you’re welcome.)

I try to live in harmony with all of nature and there are very few living beings that I kill. Fire ants, mosquitos, and now Neil. 

I had originally hoped to monitor this and remove it when/if it became a problem. In the past week that plan has changed, as thinhs often do in these situations. This type of tumor is unpredictable and waiting for it to “become a problem” could result in a situation where more invasive means would be necessary or that the tumor could not be “cleanly” removed. 

Additionally, I had a realization that Neil HAS been a problem for the last 6-12 months. What I was chalking up to my ribs simply being out, causing discomfort and a cough is actually a combination of my ribs twisting and the tumor rubbing. It’s unclear which is the chicken and which is the egg. Is the tumor rubbing the ribs enough to cause a shift or are my ribs shifting, in turn rubbing the tumor?

In any case all of this “new” information is a clear answer that Neil has got go. 

Originally I was trying to avoid surgery because it was being presented as quite invasive. With a LOT of recovery time. Now, I’m not saying that this isn’t still invasive, it is.  However, after meeting with the cardio thoracic surgeon yesterday, it is way less invasive than I was originally told or expecting. The surgeon expects that he can do this procedure with a scope. Just a couple small incisions and a chest tube for a couple days while I’m in the hospital. The tube comes out on day three. I get to go home on day four. I need to be with someone for just a couple days after I’m discharged and then can return to “light duty” life as normal. 

I really vibe with this surgeon and his whole team. He was very thorough in explaining every step of the process. We addressed all of my “Scleroderma body limitations” that can make surgery a little more complicated. He sat down and showed me the entire PET scan of my body. It all looks “clean”, except for Neil, who lights up like the New Year’s Eve Ball in Times Square. 

I’m at ease with all of this. In as much as I can be with cancer and lung surgery. Of course there’s a smidgen of anxiety and concern. Cancer. Lung surgery. How can there not be? 

All-in-all I’m good. I’m ready. Let’s do this. Neil has to die. On November 30th, Neil WILL die. I will persevere. I will rock on. 

💋🤘🏼

The Next Chapter - “Kicking Cancer’s Ass, Too”

I haven’t been posting anything with in depth content or thoughts. I haven’t really had anything significant to share. I’ve been feeling the best I’ve felt in a long time and have been living my happy little farm life. I now have four horses - all Mustangs. Chickens, cats, and dogs. I’ve just been here managing me, my self care, and farm life. 

Let’s play a little catch-up. 

Earlier in the year I made changes in my medical team due to the previous facility not accepting my new insurance. Which was OK because that facility is four hours away and I didn’t vibe well with the rheumatologist. 

I started building a new team here in the Tampa area and I’m very happy I did. I really like my new rheumatologist. Though he’s not a Scleroderma specialist, he sees a significant number of Scleroderma patients. His team is excellent. It’s all been a great experience. 

Well. Mostly. 

In getting all of my annual monitoring testing done, he was uncomfortable with a mass on my left lung. The mass has been there for two years, previously diagnosed as a rounded telactasis. Common in Scleroderma patients with lung scarring.  It hasn’t really changed in size. It’s not affecting me physically. He still was concerned and sent me to see the pulmonologist, who was also uncomfortable with this mass and ordered a PET scan. 

The PET scan showed “hot” for lung cancer. BUT rounded telactasis can throw a false positive here. To be 100% sure, a lung biopsy was done - much to my dismay.

I was absolutely 1000% sure in my heart and soul that this was just the other “thing” and that this was all unnecessary and by the time I got to the follow-up appointment I was over all of it. 

I was tired of appointments, and procedures, new doctor bills, and disruptions to my normal happy little life. I went to the follow up appointment cocky and confident as shit! “Let’s get this show on the road and move the f¥ck on.” 

“It’s cancer”. I almost dropped my phone and thought I was going to vomit. Those two words are a kick in the gut. A kick in the gut that even having Scleroderma never gave me. I’ve never had such a visceral response. 

“The good news is that this mass is isolated. It hasn’t spread and it’s on the outside of your lung. We can remove it and be done. Though we do have to be careful because you already have decreased lung function. It’s not advisable that we take any of your lung because that would compromise your function to a level that will negatively affect you.”

So. Ok. There’s good news. As much as having cancer can have good news. 

I cried walking to the car. I ugly cried, Carrie Underwood style onceI got in the car. I spent part of the weekend being emotional, of course. I also spent a lot of my weekend doing Yoga for Scleroderma work and in “therapy” … horse therapy, Jeep therapy, and talk therapy with my loved ones. 

Coming out of the weekend I had renewed energy, affirmations, and  confirmations that I still have so much purpose and work to do that this isn’t going to slow me down. I devised a plan to ramp up my self-care, diet, and really root into all of the things that I know help to fight cancer with the hopes of being able to just monitor this and make surgery the last resort. Hoping that my oncologist consults and second and third opinions would support my plan. 

Again, I was shut down. I was prepared this time, though. After speaking with my Rheumatologist - surgery is the best course of action to ensure the best long term outcome. 

It makes sense. I understand it. I still don’t like it. It’s not ideal for my life. It will definitely slow me down for a bit. It will require accepting some things I despise, but also know are sometimes necessary evils.  At the end of the day, it is what it is. 

I see the cardio thoracic surgeon next week and two oncologists shortly thereafter just to be extra extra sure. 

I’m in a good place mentally. Really. Is this something I’m looking forward to? Absof¥ckinglutely NOT. AND it’s just one more thing for me to get through, to kick its ass, and to survive, coming out “on top”. Again. 

Welcome to “Kicking Cancer’s Ass, Too” - the title to the next chapter in my story of persevering and rocking on! 

💋🤘🏼

(Pics are some of my therapies. Jeep therapy, animal therapy, sleep, sauna, and MORE)

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.

💋🤘🏼

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!

💋🤘🏼