Finding New Abilities Post Amputations

The original bandages have been removed. I have since changed the dressings two more times. The incisions themselves are starting to look better and I think that over time they will heal and not look as bad as they seem to to me right now.

There is no pain. The itching has begun as the incisions begin to heal. And the phantom feelings have been popping up the past couple of days. I’ll get the urge that the tip of my finger itches and well there’s no tip there. LOL. Interestingly enough the phantom feelings associated with my previously fully amputated index finger have also picked back up since the surgery. I’m guessing that the nerves are just hypersensitive now and therefore I’m getting all kinds of weird sensations.

As for functionality - I have some “new” abilities that I haven’t had in a while. A couple of things are a little more difficult than they used to be… However, I feel like that might partly be because I can’t use the new tips just yet as they’re still tender and healing. 

I don’t have the movement and flexibility that I was anticipating in the joints were my nubs attach to my hands. I’m still swollen and hoping that once the swelling wears down and the sensitivity wears off I can exercise those and do yoga for the hands and hopefully free that up a little bit.

Those are “minor” issues though… 

Overall the regained abilities far outweigh the “issues“ that I’m noticing. 

As you can see in the pictures below… I can now put my palm on the steering wheel - that’s not something I’ve been able to do you in I don’t remember how long. Eventually I expect that I will be able to pull my thumb around the steering wheel to grasp it… However right now as the fingers are still tender I’m not attempting that.

Now when putting lotion on my arm I can now use the palm to do it instead of the side of my hand, the back of my hand or my forearm. 

I can also now access the palm of my hands to massage it when it feels like it needs stretching. That wasn’t possible before, either, because my other fingertips were in the way.

Having unimpeded access to the palm of my hand is a big help. 

So, I’ll keep on and see where things go from here. 

Persevere. Rock on!

 
 

48 Hours Post Finger Amputations

Just over 48 hours post surgery and in the grand scheme of things, I’m doing pretty damn well. 

I’ve managed to stay just ahead of the pain for the most part and am out to almost five hours between medicating. I’m optimistic that as the day rolls on I can push out even further.

On one hand, I don’t want to rush it and suffer unnecessarily. Then, on the other hand ... 

a)pain killers cause constipation and I’m not a use fan of golf ball sized bowel movements
b)addiction is heavy in my family so I’m very very cautious about my use of drugs. I can honestly see how the euphoric feeling that comes as the meds kick in could be enticing to some.

So far today I’m vertical, have accomplished a couple small tasks that couldn’t be overlooked and have made it to the sofa. 

I have to wait until Wednesday to remove the bandages and clean up the area. It’s going to seem like an eternity until then as my fingers already feel they’re suffocating because they’re in lockdown. 

LOL. If that’s the biggest part of the struggle going forward - I’ll take it!

Enjoy your Sunday, y’all!

Persevere. Rock on!

Amputation Day

Post Surgery Video Update

Esophagus Stretching

A week or so I had my first trip to the ER as a result of Scleroderma "complications". I got chicken stuck in my esophagus. They put me out, removed the blockage and I got to go home the next day. With discharge instructions to schedule an esophagus stretching procedure. The gastroenterologist on call was AWESOME and is now my GI doc.

Today was the esophagus procedure. It was my first and hopefully only!

To date, this has been the easiest, least stressful procedure I have undergone.

They got the IV into my one good tiny vein on the first try (can I take that guy with me for next week's surgery, too?). They opted to not intubate which means I didn't need the muscle relaxer that cause the muscle issues last time. I last looked at the clock in the procedure room at 1015 and I was opening my eyes again at 1030!

He didn't have to use a balloon to expand my esophagus because as he was probing around the constriction, it opened up on its own. I had no idea this was a thing, but I'll take it!
I'm home chilling and following orders to relax and not drive for 24 hours.

Persevere. Rock on, Loves!

Finger Amputation Consult

A lot going in my Scleroderma Slaying journey right now. All good things. This post may seem drastic and make some people sad, please know that I am not sad. I'm not concerned. I'm ABSOFREAKINLUTELY excited! 

Yesterday I had a consult with an Orthopedic Surgeon here in Florida to discuss, make plans for surgery on my left hand. These contractures have to go. 

The surgeon was awesome and open-minded. He agreed with everything I said and believes that my train of thought and reasons for moving forward this way are perfectly appropriate.

It was refreshing in some ways to be heard and not told that I don't know my body. While that scenario hasn't happened in years, it's always something I'm prepared for when visiting a doctor that is not a Scleroderma specialist.

The plan to move forward is to amputate 1/2 of the remaining three fingers on my left hand. You can see in the picture that my hand is permanently contracted into this position. I've adapted and use my middle knuckle as the new "end" to my finders. I type, touch, squeeze, etc. from there. The remaining part that's curled in just gets in the way. The skin is thin and easily gets scratched or sores from use and the tip of the middle finger is curled so much that cutting and filing my nails is a nightmare. So, it's time to make my life easier. By removing the nonfunctional part of my fingers, it then opens my palm back up so that I'll have some sort of an ability to "grasp" things. These are HUGE functions to be able to have restored.

I've opted to not do arthrodesis like on my right hand for a couple of reason... it's a more complicated procedure to remove those middle knuckles and then fuse the other bones together with a pin in them until the fusion is complete. The recovery time for that is 8-10 weeks - in a cast like thing. Then there's a learning curve. I'd have to go to therapy to train my brain how to operate the fingers in their new form.

Amputation is actually more simple. I'll be home the same day of the surgery. I have stitches for 10 days and then I'm "done". I'm already using my fingers like the portion to be amputated doesn't exist, so there's not much of a reeducation process.

I've been wanting to do this procedure for over a year and for whatever reason have not. Now is the time! Next Friday is the day!

This Thursday I have the esophagus stretching procedure completed. Interestingly, still no issues swallowing or with food getting stuck since my ER visit. I almost don't want to have the procedure, but since it's scheduled and he wants to look and see how things recovered from before, I might as well get it over with.

Monday, I trek back across the state to have my initial visit with the new pulmonologist and a check-up with the rheumatologist.

Getting all the "shit" out of the way to start the new year off with a bang!

Additional note ... after the surgery, it will be much easier to get a mitten on that hand ... less stress for that Alaska trip!

Persevering. Rocking on!

Nothing Is Carved in Stone

The bad isn’t necessarily the new norm when it happens.

In 2015, between April and September, I drove over 10,000 miles up and down the east coast. I could drive for 12+ hours a day without much of an issue. I’d stop every few hours, snack, stretch, and get back on the road.

By August of 2016 that was not possible. I was in a cycle where my exhaustion was high and driving for just a few hours would wipe me out and I could easily fall asleep at the wheel.

In February of 2017 I trekked across Florida to see a new rheumatologist because traveling back to MD to The Johns Hopkins Scleroderma The Johns Hopkins Scleroderma Center just didn’t seem feasible anymore. The drive (roughly 4 hours) there went OK. I saw the doctor, grabbed a hotel for the night and trekked back the next day. The return drive was a struggle. By the time I got home I was a hot mess. Exhausted. Sad. Angry. Crying. Thinking I could no longer be a road warrior.

In the last three months I have had to make two more trips to the clinic for follow ups and routine testing. On both trips, I have been able to make the trip there and back in the same day. Yesterday’s trip was a little more exhausting because I decided to road test the new barn truck. It’s not easy to drive any vehicle these days because of my hands and shoulder issues, and yet, with the right tools, adaptations, etc., I won’t be stopping anytime soon! I have shit to do in this life and I have to keep this body moving to do it!

The day following each trip has been an almost 100% down day because my energy levels have been depleted, I’m a tad more achey than I have been prior to the trips and, well, because I know that I need the downtime .... balance.

I have another trip back in just over a week and I am considering staying the night on this trip. No point in pushing the envelope if I don’t have to. 

Today though, I rest after yesterday’s trek, happily reminding myself, nothing is set in stone. To not count myself out of things because...it isn’t over til it’s over .... and it isn’t over yet!!

Persevere. Rock on, Slayers. Rock. On.

Scleroderma and Sex: The Issue Nobody Talks About

Another article for The Mighty about a topic nobody talks about. It shouldn't be taboo!

When I Blamed Scleroderma for Stealing my Identity

Once upon a time I thought Scleroderma stole so much from me. Since, my perspective has changed, but here's another article I wrote for "The Mighty on this subject.

Reflexology - Like Seeing a Fortune Teller

I had my first reflexology appointment this week. It was an interesting and incredible experience and I will continue to get this treatment on at least a monthly basis.

What IS Reflexology?

Rather than go into the details of what Reflexology is and the benefits it can have, I'll let someone else explain that. Why re-create the wheel? Here's a great explanation that I found to be awesome!

Why Reflexology? 

Because of every single thing described above.

Because my feet are a hot mess. They have issues all over the place. Chiropractic care and massage help, but I'll take what I can get. If I don't keep my feet functional, I'm screwed. I have adapted a lot for my hands. It's been a struggle and yet, I make it work. If I can't use my feet, life will become exponentially more difficult. I'm only 40. I'm not ready for that yet.

Because of the idea that my body feels and operates better with various treatments versus medications. Why not add one more to the toolbox?  I've discovered that Eastern/Chinese what-have-you treatments and exercises work wonders and reduce the need for factory designed drugs. These treatments have usually been around for thousands of years ... I find logic in the idea of "if it ain't broke don't fix it" - meaning, if these treatments have been around for this long, there's something to be said for the effectiveness. Additionally, I'll take the word of numbers of people promoting them because they make their bodies feel and function better - no big company or corporation is paying for that "research" and then reporting only findings that promote their product. People are just reporting that they feel and move better. That's enough for me.

The Session

After relaxing in the awesome quiet, dark and cozy lounge area at the spa, I was taken back to the treatment room by Katie. Though she is skilled in various beauty services, let me assure you, she was very proficient at this bodywork service, too!

First, she gave me a foot bath while we discussed my condition and what she was going to be doing throughout the treatment. When I spoke about Scleroderma, I was vague and just noted that it affects my joints and connective tissue, to include various organs.

After the foot bath, I climbed on the table and got all snuggled in under the fuzzy blanket with an eye pillow and heated neck wrap. Really, this could have been enough.

She started with my hands and worked with them the best she could considering their condition. The pressure in the palms of my hands, seemingly forcing my hands open in ways they no longer can achieve on their own .... felt AMAZING! Like a release from the constant inward curling and contracting.

Then came the feet. This was a comical situation of sorts. This is where it felt like I was seeing a fortune teller.

If you've ever watched a fortune teller on TV, you see them pull a card or whatever tool their using and saying things like "I'm seeing/feeling darkness. Has there recently been a loss in your life?" ... or something to that affect. So, as she's working different locations on my feet I could definitely feel the discomfort and pain I carry in those locations ... only amplified with the direct pressure, and eventually being lessened or released with her techniques.

At some of the more intense locations, she would say "this feels really hard or tight to me. It connects to _________." Would you believe that every point that was "intense" for me and she could feel a difference is actually a place in my body that I have or have had issues with:

• Thyroid
• Lungs
• Heart
• Frozen Right Shoulder
• Sciatic nerve issues
• Hips
• Esophageal Issues
• Stomach issues
• Colon Issues
• Chemically Ovarian Failure & Menopause
• Protein in my Kidneys

There were plenty of locations on my feet that just enjoyed the pressure and massage with no discomfort. In the end, anything that started in discomfort felt more open and relaxed and extremely less tense.

I was definitely light headed when I got up. Definitely relaxed. Super thirsty. I'm rarely thirsty.

After the Appointment

Katie had said that some people claim to be hungry after their session. Oddly, I was! Again, NEVER hungry because of my lazy stomach.

I noticed that throughout the rest of the day my hands definitely felt less tight and the skin on the back of my hands had a more even look to the tone and color. It appeared to be less blotchy than normal.

I continued to be thirsty. I drank at least twice my normal amount of water. Which is to say - I actually drank water.

I slept great that night and experienced the longest amount of "deep sleep" (according to my monitor) that I have since I started monitoring my sleep patterns.

The next day I was a little alarmed as I woke up with increased pain in my right frozen shoulder. I wasn't super happy at this revelation, but just went with the flow. Interestingly, in the days since the treatment, I have become aware that my frozen shoulder aches less and I have some increased range of motion. I am aware of this because I needed to get something down from a shelf above my head. (Not to worry, I'm removing all shelves and cabinets that are above my head for this reason) Normally this would be painful as I'd have to push through to get my arm to reach and my shoulder would "click" like it would "catch and release"... I prepared myself for this to occur and it didn't.

The same type of scenario occurs when I brush my horses mane. Not for the last two mornings.

I of course have no conclusive scientific measurements that reflexology did these things, however, if that's the only "new" thing in my routine - what else would I think?

I've already schedule my next appointment.

Keep those bodies moving, Sclero Slayers!

Persevere. Rock on!

💋🤘🏼

One Phone Call Changed It All

After that phone call with Kathy in May and the two weeks in Reno, in June, things have definitely changed!

While in Reno, I met a woman with Scleroderma who does yogic hand exercises that Kathy taught her, yogic breathing practices, as well as attends Kathy's weekly class. This woman started all of these practices just after being diagnosed with Scleroderma. When she started, she was doing yoga in a chair. Now she is:

• doing a full class on the floor like "able bodied" folks
• reversed the initial hand curling
• improved her lung function

Read those bullets again and let that sink in. Additional proof that yoga can help this (and other) disease!

Now I KNOW we have to get this information out to the masses. It's time to get this passion of mine set into motion! Since yoga has been such a help to my body, I've wanted to be able to give that gift back to the community, but didn't know how. It's not like there are large numbers of Scleroderma patients close by. 

Since starting this journey with Kathy, we have presented and taught at the Scleroderma Foundation's Scleroderma National Conference in Phoenix in July and at a Yoga for the Special Child Summer Conference here in Sarasota at the beginning of August.

Kathy and I demonstrating assisted yoga at the YSC Conference.

Video of our presentation and my adapted version of a Sun Salutation (36:00 mark)

While I was in Phoenix, I was asked to participate in a project where they take your picture and you share your story - a "Faces of Scleroderma" type thing ... what was supposed to be a couple of snapshots turned into a full on photo shoot because the photographer and I connected. I'm actually excited to see these photos, as I typically don't like photos of myself anymore, but these were beautiful. Even before editing.

I'm now also an ambassador for a grass roots organization called Accessible Yoga which works to provide yoga to people with all sorts of limitations - be it from diseases or trauma - as yoga really DOES change our bodies and help with disease maintenance. So, I'm heading to an AY conference in San Francisco in October and will be presenting and learning from others while there.

We've been asked to present in Philly in July of 2018 for the Scleroderma Foundation's National Conference again, as well as various rumblings with "invites" to Canada, and other U.S. locations that want to learn from us, so that they might be better able to help their communities.

I've also started writing for "The Mighty" - an online publication. My first piece was published two weeks ago and I'll be submitting another soon.

I'm discovering that having new focus and working to fuel my passion has also had positive disease affect. I stay on track more with diet and daily yoga practice now. If I'm trying to help others live better lives with their disease, I need to be on my A-game, as well. I have to lead by example.

Having these things fill my time also keep my brain positive and upbeat. I feel like I'm contributing to the world in ways I was never able to before. That all has an affect on disease activity and flares, as well. In a positive way!

I've been to see the cardiologist and rheumatologist recently an things are looking pretty stable. The protein in my urine has disappeared and while I have some pulmonary hypertension activity, it doesn't appear to be new. A pulmonologist visit is scheduled for October, as is a bone density scan. I want to see where I am in relation to my last bone density test a few years ago and use the recent tests as a new starting point to improve those numbers through lots and lots of green leafy derived supplements and weight bearing exercise.

Left hand surgery is in the process of being scheduled, as well. I'll be having the remaining three fingers amputated at the middle knuckle. The current full fist is no longer cutting it for me. It's slowing me down too much and I am confident (and have discussed thoroughly with two docs) that this plan, while drastic, is the path I need to take.

I added reflexology to my list of treatments this week. What an amazing experiencing. I'll be posting a blog with details about it soon.

Persevere and Rock On, my Sclero Slayers! Keep those bodies moving!

We got this!

💋🤘🏼

Writing for "The Mighty"

I started writing for the online publication "The Mighty" to hopefully reach more people and help others continue to live quality lives.

My first article is here.

Only One Direction From Here

The past 15 years of my life have been one long roller coaster ride. The last three years seeming to be one thing immediately after another - a mix of personal situations and health complications that have just seemed to be almost non-stop.

The last few months being the most hard hit - seemingly with no reprieve in sight and I have had plenty of days where I wasn't sure I could manage "one more thing". There have been deaths of close loved ones, ends to friendships, home upheaval and chaos, a new scary health diagnosis, and travel ... ALL in the last 3 months.

It was a LOT and yet, I was still plugging through. With a lot of tears and meltdowns, mind you and days of wanting to sit home and eat ice cream and cry that "it isn't fair" and that "I hate the world" ... but I wasn't (much) ... I was still doing it. Still managing life.

In the midst of it all, through a social media encounter I ended up planning (while on a train to somewhere else) a last minute whirlwind trip to Reno for two weeks to work with Kathy Reynolds to record new video for Yoga for Scleroderma and to add another yoga certification to my bag of tricks, as well as becoming certified to teach Yoga for Scleroderma ... How cool considering I am already certified to teach yoga ... oh, and I have Scleroderma! LOL. I was looking forward to this opportunity, but on the heels of everything, I already knew this was going to be "a lot".

And it was.

Getting to Reno ended up being what I thought was "the straw that broke Lori's back".

By the time I reached Reno, I was done. Airport security was hard. Luggage was hard. Plane aisles and seats were too cramped. Seatbelts were stuck in cracks I couldn't get them out of. Hitting my knuckles and elbows on things. Everything was just SO hard. I was exhausted. I was cooked. I was throwing in the towel on pretty much everything. I was going to get through this two weeks and then go home and never leave my house again. In my head I was planning my backyard and home sanctuary so that I could remain in a place that didn't stress me out, was easy to maneuver and nothing was hard or a struggle. I wasn't going to deal with the "outside world" any more than I had to. My travel days were over. Finished. Caput.

While on my layover in Dallas, I even cried to my closest friends "this was stupid. I don't know what I was thinking. I can't do this."

What? Who is THAT person? Anyone that knows me for more than five seconds knows that that is not how I roll. I figure shit out. I get it done. I persevere. I rock on.

Not this time. This time I was done. I just didn't have anymore energy. I didn't have anymore desire to "figure shit out". I didn't have anymore of anything. I really felt like this must be my rock bottom.
Once I got out of the terminal in Reno, things started to look up. I wasn't changing my plans of becoming a hermit, but things were starting to look a little better. The rental car receptionist threw in a kick-ass free upgrade for my rental car. I got a good night's sleep and the next morning, I went for a nice drive in the middle of nowhere - driving and seeing nature soothes my soul and clears my head.

My perspective was starting to brighten.

THE NEXT DAY EVERYTHING CHANGED!

After an AWESOME day shooting this video and connecting with amazing people that share my vision and my desire to make life easier for folks with Scleroderma - we have new plans set in motion. I am now able to give back in a way that I've been wanting to but didn't know how to execute or facilitate. Now I have the right pieces of the puzzle. I have some amazing new people in my life to move these dreams forward with. I FINALLY have a way to tie some of the ends of my life together in a way that finally make it all seem right.

I have a purpose.

Some of the "how to get from here to there" will need research and refining ... and that's OK. That's what I do! That's how I serendipitously fell into this whole "Yoga for Scleroderma" endeavor anyway ...because I know how to research, modify and refine .. all on the fly to make things work. Whether its yoga or my life ... I just figure out how to make it work. And I have a great support system. I just need to learn to ask them for ideas and help.

Rock bottom ... just a launching pad to do what we do .... persevere and rock on!

Ch-Ch-Ch-Changes

This page has been devoted solely to my Scleroderma. However, there is so much more to my life than "just" Scleroderma. Yes, it has an affect on almost every aspect of my life, but there is still so much more.

My body may be riddled with Scleroderma ... and yet, my brain has much more than just Scleroderma on it. My soul has so much than Scleroderma in it. I have more than just my Scleroderma to offer to the world. I have more to say. I have a lot to do. I have a lot to share.

With that said, this page will be undergoing some changes. I hope to expand the content to include more of my life. My thoughts on varying topics. My dreams. My questions. My goals. My travels and my journeys - real journeys on planes, trains, and in automobiles and my emotional and mental journeys, as well. I believe very deep down that I need to share the other aspects as well, because to not do so feels like just a drop in the bucket. Like I'm not being true, honest or authentic.

There is more to life than just this disease and others need to be able to witness that and learn from "IT", too - whatever that "it" may be.

I hope you'll stick around for the entire journey.  It's never easy. Some part of every day is a struggle. Even on the most beautiful of days. In that, lies some beauty to be shared because in spite of the dis-ease that comes with this disease ... the journey is beautiful.

Persevere.

Rock On!

Sclero Hack - Grooming/Bathing

Let's change "Tips & Tricks" to "Sclero Hacks"

Welcome to one of my least favorite most detested chores of life since living with Scleroderma....

Cleaning my damn body. It has to be done - be it FAR less frequently than it used to.  It's SUCH a chore and can easily burn through your energy stores pretty quickly. 

Showering gets a lot of thought for me. What outings do I have? What days/times surrounding those outings do I have free to allot for the grooming process itself and then the often needed nap or at the very least extended period of downtime.

Never do I shower immediately before needing to be somewhere. A recipe for disaster and a sure fire way to ensure the following events are clouded with my 'tude.

So, here is a little trick I love.  I use bar soap that is made from all plant based ingredients. I AM using this on my largest organ, after all ... AND one that tends to be a finicky, sometimes cranky bitch. Yes, I said that out loud. I use bar soap because, with this hack, it just makes bathing a gazillion times easier. You'll see why ....

    

I also use a baby washcloth. They're lighter and less rough on my knuckles when they are sensitive. I have my bar of soap cut in half so it's easier to manage with the limited opening of my hand. I then wrap it in a baby wash cloth and secure the top with a clear silicone type hair tie.  Now I have a washcloth/loofah + soap all in one. No slippery cumbersome bottles and washcloths to juggle all at the same time.  No slippery bars of soap to chase around. 

I used to use body wash with a pump and STILL managed to fumble too much.  The pump spins around, or is too close to the wall so I can't get my hands in there - whatever the case may be. Still a hassle.

So, I came up with this. It's super functional, less waste in the packaging and now, no loofah a to throw out and buy new. Less waste in terms of trash and wasted dollars!  Just launder the washcloth.

I have one on my bathroom sink and one in my shower. They're also great for travel. Just throw them in a ziplock bag with your toiletries ... Takes up less room, no worries of leakage and, if you don't want to check your luggage, one less item to worry about at security!

Persevere and Rock On!

💋 🤘🏼

Being a Fighter

While this blog is called "Sclero Scoop", there is more that goes into a life with chronic illness than just the illness itself. Relationships, experiences, and the generally living of life have an impact on our health and how we manage it ALL.

With that said, today's post is more about life and how I developed the fuel that is my desire to fight.

People often comment that I'm so strong or that I'm such a fighter. Most days that's true. Quite frankly, there also plenty of days where it's not true. Truth be told, there are days that I don't fight and I'm not strong. There are days that I do the basics to get through the day and I hide in the comfort and safety of my house and whichever "comfort" location is for that day.

Mostly, though, yes .... I fight and use the strength I can muster to persevere and rock this life.

I don't mean to make light of the strength or my will to fight and dismiss it - if it seems that I am, it's because I believe we all have it. So, I don't see myself as being special or different for exhibiting it.

It's part of all of our survival toolkit. We are all born with the "5 F's" as an innate part of our makeup. Our brain processes every situation (whether we are aware it's happening or not) under one of these F categories:

1. Fight - do I need to fight this thing?
2. Flight - do I need to run from this thing?
3. Freeze - am I just going to stay put and see what happens?
4. Food - do I eat it to fuel my body
5. Fornicate - Do I need to mate with it to procreate and continue my species growth? (I was going to be my originally colorful self, but I'm trying to tone it down a bit)

So, see? We all have it. I think we hone (or not) those skills based on the lives we lead and the examples set before us by our families, mentors, and peers.

As a child I learned what it meant to "fight" early on. Not fight as in "I'm gonna go whoop some ass on the playground", but fight as in "I will get through this and keep on going". I learned it from my parents. From my family. I don't believe anyone in my family has ever had anything come easy to them.

You see, my father was born with Polio and had a rough life from the start. He underwent surgeries, spent years in corrective leg devices, casts, and lived with his left hand permanently like MY left had is today. And yet, he played little league, he played basketball, he bowled, he drove a manual transmission, he went to college to get a degree in heavy equipment maintenance, he held a job doing manual labor for 25 years of my life. He tinkered on cars as a hobby. If any of my friends had a broken bike, he'd fix it. He taught me to maintain my own car.

Aside from all of that, my father also fought a battle with alcoholism. A struggle, that from what I understand started early in his life.

My parents met and had me when my mom was very young. She gave up a lot to be a mother and a wife and took on the struggles of being the wife to a man fighting a whole world of battles.  None of it was ever easy. I believe my parents struggled to get us by more than it was ever easy.

That's not to say life was horrible and down-trodden. It just wasn't easy. There were plenty of good times. There was plenty of laughter. There was love - however poorly expressed - it was there.

My father's mother was a great little lady. I refer to her as the closest thing to Mother Teresa as I will have ever known. She was my father's rock and biggest support system throughout his life with an uncanny ability to get him to "get back on track" at anytime he was struggling. When my grandmother passed, there was an obvious shift in my father's will to fight any struggles before him. Most obviously, his alcoholism.

As things go, my parents loved each other, but were not meant to be life long partners. Even at 17, when they separated, I knew this. Sometimes, one person's burden to bear is too much for even two people to bear. Looking at the situation from my now 40 years of experience and knowing what I know about people and relationships - it's obvious to me that they were not meant for a lifetime of happiness together. Their time together served it's purpose and it was time for their paths to go in different directions.

My father picked himself up and started a new life. He got himself right for a time. He was a great path. For the first time in a long time he as proud of himself and what he was doing. He went and ordered a new truck from the dealership - the first and only new vehicle he ever had. I remember the day we went to pick it up like yesterday. It was bittersweet - he was proud as punch of this new vehicle and the idea of moving forward ... while being a little sad at letting go of the past - that past being represented in the truck that he traded in that had been in our family since I was born - 17 years! I was so proud of him and happy that he seemed to be doing really well.

In the years to follow, his journey would take him on and off the wagon with alcohol and ultimately, he just lost his care for life and the idea of living and alcohol won it's control over him.

Through it all, he managed to keep the truck. It meant something to him. It represented a lot and yet, at the end of his life, the truck was a pile a junk that had just enough life left in it to get it to its final resting place - the junkyard - where it quite literally "died".

The day I cleaned out my father's things and cried as I watched one of his most prized possessions limp off, I took one of its keys and put it on my keychain to have as a twofold daily reminder

1. What we can achieve if we fight and overcome and have the drive to do so, no matter the lifetime of obstacles put in front of us.
2. To NEVER give up and let any of my own demons keep me down for too long because to do so allows life to be simplified down to a pile of junk ... and is to waste time and energy and the ability to experience all of the beautiful things in this lifetime. I want my life to be LIVED!

I've been struggling emotionally lately and in doing so, knew I need to keep reminding myself to not stay "stuck" for too long.  I had the idea to change the key into something more. Today, my roommate brought me the completed fruit of my vision ... The bottom of the key is now worn with the cairn I wear 24/7 and the top has been put back on my key chain.

I cry happy and sad tears in one. For the lessons I've learned and for what "could" have been if the will to fight were stronger and what "was" because the will to fight was lost.

We grow up because of our parents or to spite our parents ... or both.

My parents have taught me invaluable lessons in this life. Some they meant to. Others, they didn't know they were teaching.

Regardless - if you ask me where I learned to fight - I'll tell you, "believe you me (one of my dad's favorite sayings) I learned it from my parents. I've never known any other way."

Persevere and rock on!

💋🤘

I'm Having an Affair ... And It Was One of the Best Days in a Long Time!

I've finally found a Rheumatologist in Florida that has years of experience with Scleroderma patients. The clinic is FABULOUS (I'll tell you all about the day in a moment) and I'm very excited. It was a long day with a lot of funny little bits and pieces, so hang on for the ride and some laughs.

My Rheumatologist in Maryland has been with me since day one with Scleroderma. That's 15 years with Dr. Wigley. Aside from family members, he's the longest lasting and quite meaningful male relationship I've had. Obviously from a doctor patient perspective and yet, he's been family, too. He loves his patients and provides great love and care. He's been with me through two failed marriages and saved my life, literally, on more than one occasion. I have a love for this man that will last my lifetime. So, to now go see someone else feels like I'm stepping out. Like I'm having an affair.

It's not that he doesn't make me happy. It's not he's not giving me what I need. It's not him ... it's me! Long distance relationships rarely work. Someone always needs more than the relationship can sustain. Often times, someone steps out. In this relationship, that's me. I'm cheating on my rheumatologist because I found someone new. Someone that I can see on a regular basis without spending half a fortune and multiple days to fly or drive states away and hope that nothing pops up that we have to try to cram into the visit before I return home.

Not to worry. Dr. Wigley knows. We have an open relationship like that. He even thinks it's a good idea. Which was an actual conversation that lead us to today and all that has occurred since 0815 this morning.

For the first time in forever, I actually was out the door ahead of schedule. That NEVER happens. I start out ahead of schedule and before I know it, I'm running out the door like my hair is on fire and all in a panic because ... yet AGAIN, I'MA BE LATE!

Not today. I was out the door 15 minutes early, I got tea and filled up the gas tank. I tried out a new clip for the card at the pump (video coming soon) and that worked beautifully. While the gas was pumping, I went in to buy a pair mittens I saw a few weeks ago and when I come back out, there was GAS EVERYWHERE!!! I couldn't avoid stepping in it to get into the car and it was a little slick. I felt like an ass for having this happen and this is where I started to worry the day was going to hell in a hand basket.

I chose to not think about it like that and get on the road. Listening to my new favorite station (Tampa's Magic 94.9 and they have an app, check it out - it's da' bomb) as one of my daughter's favorite songs from when she was in high school came on. One of those songs she played to death and we all grew to hate. Now, it makes me smile. I was at a red light so I was texting her to tell her ... at the same time, she texted me to tell me she loves me and to have a great day. AWWWWWWW and funny as hell coincidental.  The very NEXT song to play was the current favorite song of the dear sweet 8 year old that lives with me. The song that she asks to be replayed 50 times if it's on on my phone. I hafta admit, it made me a little teary. So, I called my roommate to tell him about this and tell him about my gas situation and before I could even finish anymore than saying "I came out and there was gas..." when he exclaimed "IT WAS YOU! YOU WERE THE CULPRIT!!!" WTF, Dude? Why you yelling at me? He proceeded to tell me that just before I called him, he stopped for gas and slipped in a puddle of gas at the gas station and his shoe went flying across the parking lot. *snert*

Yep. Guilty. That was me.

I proceeded to drive my 3.5 hours down I-75 and across Alligator Alley jammin' out to this new station that really was partially the key to a wonderful drive. It's a station filled with music that is from all over the decades and keeps my booty moving. A lot of songs that are guilty little pleasures that I don't like enough to put into a playlist, but that are awesome enough that I didn't need to change one single song. I dig that!

Add in that I didn't get tired once on this trip, only had to stop for one bathroom break and arrived to the clinic 40 minute early. It was shaping up to be one helluva great day!

The Cleveland Clinic in Weston Florida may now be my new favorite clinic. It was simple to find. Parking was easy and free. The facility is new and very well decorated. Every staff member I spoke to was friendly and cheerful as all get out - from the elderly folks manning the information desk to the woman who checked me out and set me up with my follow on appointments. They all seemed to be pleased to be there.

When I arrived at the clinic there was the option to use a kiosk to check in or to see the reception staff. I'm a geek, so I opted for the kiosk, plus I like to leave the receptionists available for those that might prefer personal help or are intimidated by the technology. It was extremely simple, to include scanning my ID and my insurance card. There was attendant on hand who stopped by to check on me to make sure I was doing ok, as well.

I was taken back promptly for my appointment and did the usual weight and vitals checks... 102.9 lbs Y'ALL!!!! I haven't been above 100 lbs in at least 5 years! VERY exciting news! I spent about 20 minutes with the nurse so that she could input my necessary data into the system. Then an intern or fellow (I don't remember for sure) came in and spent a few moments making sure HE understood my history.

During this process I discovered, that, for the first time in ... EVER ... I had to take my sweater off!! My toes were cold, but the rest of me was NOT! That's new in a doctor's office.

Here comes my ONLY complaint about the clinic and here's a warning ...I'll be sharing a little TMI, because it makes the story funny, is just how my life often works out and precisely why I use humor...I don't have a choice! If I couldn't laugh at this crap, I'd be miserable 100% of the time.

At this point in my visit, my colon, that is already lazy AND has now been in a full on strike (because I've been taking pain killers to manage ulcer pain at night) for the past week or so decided that NOW ... as soon as this gentleman was done examining me and JUST before the doctor came in ... NOW .... I repeat NOW, was a great time for a bowel movement. There will be no waiting. YOU GO NOW!

Great.

Fortunately, the restroom is right across the hall. I go. I do my business. ALL THE BUSINESS! And THIS is where I get pissed. Or pooped, if we're sticking with being funny. It's not just a complaint with this clinic, it's a complaint with a lot of medical facilities over the past 15 years. It's to no fault of the clinic either, it's just a design flaw in whomever sets up the bathrooms. I know the intended purpose is to assist disabled individuals...and I'm sure it does ... just not me. ....... The giganto toilet paper dispenser with the two giganto rolls of tissue thin paper in them are placed UNDERNEATH the handrail...with toilet paper hanging out below me. You have to bend down to get the toilet paper out. WTH?  This is NOT functional when:

1. you have no flexibility in your hands or wrists to grab said toilet paper
2. the rolls of toilet paper weigh a bagillion pounds and when you try to pull out the tissue thin paper, it rips off in tiny pieces that are even too small for a hamster to wipe its ass - like really, people? I just unleashed a week's worth of who remembers what in your john (seriously... think 'Christmas Vacation "shitter's full"') and you expect me to do what with these pieces, exactly? I don't have a shaving knick here folks!
3. If you're not going to work with us on this aspect...maybe consider putting in some bidets? A hose down and air dryer might be an alternative here!

Somehow, I manage to wrangle enough out of the dispenser to take care of business, wash my hands and head back in to meet my new "love".

This a great way to start off a first date.

Dr. Donahue is my Rheumatologist. Wonderful man. He's been working with Scleroderma patients for years AND ... here's another bonus ... The CC uses the same software application as Hopkins, so he has MY ENTIRE 15 YEARS of medical records at his disposal. Do you hear the angels singing?

He knew my history before he came in. We discussed everything from my perspective. I admitted that I've been less than a "good patient" since moving to Florida.  I haven't put the time, energy or money forth to do so because my care team was back in Maryland. I didn't want to go there all the time for treatment. I didn't trust anyone here because I had no desire to work with doctors with no Scleroderma experience and worry that I would be their show and tell project or that I would have to teach them. I've voluntarily participated in enough actual clinical trials and studies in the past ... I didn't want to be a test subject for someone new. Therefore ... I took the "easy" way out. The path of avoidance.

He listened. He understood. He didn't chastise. He agreed with me. Though I get the sense that he supports the use of pharmaceuticals as a first line of defense (not unexpected) he was also understanding and appeared supportive of my desire to manage this as naturally and holistically as possible - knowing that I can't always avoid drugs, but that I want to try to as much as possible.

He examined me. I didn't have to get undressed. We made a plan. An all encompassing plan.

I will see him every 3 months or so, like I would Dr. Wigley when I was in Maryland AND .... before I left, I have appointments with the rest of my new healthcare team in Florida ... I have consults with a pulmonologist and a gastroenterologist in April. The same day I come back for my follow up with Dr. Donahue. THE. SAME. DAY.

The only foreseeable snag will be finding a hand surgeon here to move forward. He was honest to admit that the surgeons here tend to not "not want to touch" these types of hands. He does have someone in mind to try on for size and we'll go from there. That portion, while annoying and painful, isn't a priority right now. My GI issues and continual care are of importance. Once we have those worked out, we'll move on to the next thing.

I was there 2 hours total and had a wonderful experience. Again, the staff was SO wonderful and supportive.

Upon leaving, I have received confirmation emails from the clinic with separate barcodes for checking in ... like at the airport. How cool is that?

 



After the appointment I contemplated driving home. Then I opted for adulting, being smart and choosing self care versus nonsensically being a road warrior. So, I grabbed a hotel for the night. I grabbed something close by and more expensive than I normally would, but I was exhausted. I reminded myself what I often tell my roommate, sometimes I forego cost savings for ease. That's just what I did. And, if I think about what it would cost for me to trek to Maryland for this appointment ... this was a drop in the bucket and well worth it!

So, there you have my lovely Scleries!


I feel like this day has possibly been a catalyst for some major change and getting back on track for me. It's been easy to slack off for the past 7 years because I could "scrape by and get away with it". Was that "good"? No. Was that healthy? Nope. Can I go back? Absofreakinlutely no. So, now, I get my ass back on track. I check in when I need to. I do what I need to do for me so that I can ...


Yep, you guessed it...


Persevere and rock on!  💋   🤘🏼

Balance

As many things in life follow a cyclical pattern, so too, do my emotions and outlooks on life, the world around me, and how I view it all.  This, in part, is usually in connection with how my Scleroderma life has been progressing.  Or not.

In spite of my father's passing, during 2015, I rocked out life.  I traveled over 10,000 miles behind the wheel - by myself.  I photographed the sunrise over the Atlantic Ocean, hopped a plane and flew to California to arrive in time to photograph the sunset over the Pacific Ocean - in ONE day - on the first day of summer. I traveled the entire Eastern seaboard. I had a great year.

It exhausted me, of course. By year's end, I started having more achey days and needed to focus on my health and my body. I had mostly faired well, though.  

By the summer of 2016, things had changed. "Small" things continued to pop onto the scene. An inflammation in the cartilage in my neck were painful and made swallowing difficult. Next up, double ulcers on one thumb, that lead to a bone infection wiped me out. The majority of the summer was spent on my sofa sleeping, on two rounds of antibiotics and under the influence of pain killers. 

In late summer I headed to Baltimore for my yearly visit with my Rheumatologist. Overall it was a good visit, addressing some issues that we need to make priorities and making a plan to get them on track. With the exception of unusually large amounts of protein showing up in my urine, most everything else was "workable". 

I repeated urine tests a few weeks after being back home in Florida, in the hopes that it was just a passing fluke. Unfortunately this was not the case and I made an impromptu trip back to Baltimore for a week to meet a new ember of my medical team, the nephrologist and get some more tests done. Fortunately, there appears to be nothing that we need to address. I am apparently one of the "lucky" Scleroderma patients that just has high amounts of protein in their urine. Therefore, we will just monitor this.

I spent most of 2016 just exhausted. Both trips to Maryland were extremely difficult for me to manage. So much so I ended up taking 2 days to make the drive there, when I usually take one and then putting my car on the train to come home.  All because I was just too exhausted to manage the drives.

If I throw all of this together with the limitations that I already have, everything around the house "fell apart" - cooking, cleaning - all of it. I came to the realization that while I CAN live alone, my life is much easier with help around the house. 

So, I took on a roommate. That has been an adjustment to get used to. I've been used to quiet and zen for the past two years and life has definitely changed. 

Just prior to Thanksgiving, my best friend unexpectedly lost her husband to a heart attack. We aren't even 40 yet. Death of any person at a young age can be difficult to navigate emotionally and to make sense of. This has been such a struggle for me. This hit me harder than the passing of my own father. If life was ever to be deemed "unfair" - THIS is it. A wonderful, loving, supportive, husband, father, friend - gone just when life was the sweetest. Why? WTF is it all for?

On any given night when I can't sleep at 2 a.m., I can be found contemplating the meaning of life. I get up and start reading, researching, trying to figure out if I'm doing what I'm meant to do. Will Scleroderma allow me to mark most things off my Life List? Oh, and the Life List - 3 a.m. is the best time to add crazy stuff to the list!

The struggles of the year, feeling less independent, losing some of my own abilities, having a friend lose her husband ... have all taken a toll on my psyche. On the outside, for the most part, I have remained my normal self, with positive outlooks, attempting to lift others up when they need it, and maintaining my desire to forge forward on my path.  

Behind closed doors, in the wee hours of the night, in very private conversations with only the most trusted of my friends, I've been very different. Often asking WTF is the point of it all? 

I have been torn. Split between wanting to be the woman I used to be - who appreciated each new day and was always looking to get the most out of life and creating experiences or being the person who just lives everyday in a "whatever" state of mind and taking what comes instead of making things happen.

It has been a real tug-of-war trying to figure it all out. Last night, I was looking over some things I have written in the past for various organizations or events and stumbled across the answer. Below is a section from one of those writings. This was the answer and reminder I've been looking for.

************************

Scleroderma has forced me to evolve and become a new woman. My old self is gone. 

Having this disease has completely changed my life. As I was preparing to undergo the drastic chemo treatment, I quickly became aware of and came to grips with the reality that most others don’t experience until much later in life – the reality that we don’t live forever; the reality that we don’t know what tomorrow will bring. Disease or no disease, I could be gone tomorrow. This disease or its drastic treatment could kill me or I could be hit by a bus. Either way, nobody is to know for sure what tomorrow will bring. I am ever so grateful to have reached that understanding at such a young age. 

The year of the chemo, Tim McGraw released the song, “Live Like You Were Dying.” It couldn’t have hit the airwaves at a more appropriate time in my life. I was starting to contemplate how I wanted to live ‘my new life,’ after all, I was being granted a second chance and I darn well better make it count! Tim’s song, coupled with Dr. Wigley’s advice of “live the good life,” and past life experiences now make so much sense to me: 

Your life, today, and tomorrow are gifts. 

Live your life with no regrets, learn from your mistakes, and don’t ever wish to change a thing or wish to have done anything differently. Everything that has happened got you to where you are today. We can’t be who we are without having been who we were.

Love with every ounce of your soul, if you give that kind of love, someone, somewhere will want to give it back to you. Giving that kind of love and getting it in return are an unparalleled experience. Even if it doesn’t last forever. Having the experience even once is worth it all. 

Enjoy life and all it has to offer. Travel, Sightsee, look at nature, find a way to do the things you want to. Do what makes you happy; don’t just talk about it – DO IT! If it seems impossible, find a way. My husband hauls (literally) me all around so that I can experience everything. Jet-skiing in St. Croix. ATVing through the rain forest in Puerto Rico. I can’t drive a jet-ski or an ATV, but HE can. He pulls me on, figures out how to secure me from falling off and away we go! I might be sore the next day, but a little achiness is FAR less than what I’ve been through before and worth the experience. 

Love and cherish the people that treat you well. Let the rest go. Their negativity and stress have no place in your life. They will make you sick. Our time is too short and too important to be wasted like that. 

Be grateful for all of life’s gifts – your life, your today and every tomorrow.

Having this disease can be difficult. I’m not going to lie and say that it’s easy. However, with lifestyle changes, the right doctors, and a good support system, it IS manageable.  THAT is one of biggest keys to living with Scleroderma - having the right group of doctors, loved ones, and friends on your team, in your corner, coaching and cheering you along the way.

**********************

THAT woman! I like her.  I like what she had to say. I like how she thought. I like who she was. 

Oh! Hey!  THAT was me.  That IS me.  It's time to get back to her!

Hello, 40! I see you out there. You're just a few months away. I'm coming for you. It's going to be awesome and crazy (good) and fun. It's going to be equally difficult and challenging and crazy (bad).

And that's OK!

Time to get back to persevering and rocking on!

💋  🤘🏼