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.

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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.

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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!

💋  🤘🏼

Teamwork Makes the Dream Work

I am aware that a majority of people struggle with the concept of feeling comfortable in their own skin from time to time. Even those that appear super self confident and don't seem to give a flying fart about what others think...I bet they struggle from time to time, too.

As much as we may want to be different or stand out in the crowd, on some level we all want to belong, too. It's one thing to stand out because you chose to, and yet, it's a completely different thing to stand out because you have no choice in the matter. For example, when I chose to stand out with magenta hair or a bright colored stripe in my bangs versus being forced to stand out because of issues that Scleroderma has struck upon me. There's a HUGE difference at how people react to you and interact with you.

Yesterday was a "beauty" focused day. Not necessarily for vanity sake. At least not wholly. Sometimes, a girl wants to feel pretty. Sometimes, she can't pull it off on her own. Sometimes, it all goes hand-in-hand. Or foot-in-hand (Yes, I find myself funny sometimes) ...

With a multi purposed intent, for the past 6 years, I get a hair cut and pedicure every month. I can't stand the hair on the back of my neck to get "fuzzy" and a new hair cut, however minor it is, makes me feel new and fresh and sassy for a couple of days.

I can't reach my feet well enough to cut, clean, etc. my toes like they should be. Why not let someone else take care of that hot mess and get some relaxation out of it? The whole time is an awesome few hours of being "pampered" that really releases a lot of tension and I profess my undying love to Michelle multiple times each visit. She's a treasure! I'm so grateful for her. I mean really - my toes can be S-C-A-R-Y!

A few months ago we noticed the big toe on my left foot looking like the picture below. At first we thought we thought it was that "ick" you can get from wearing polish all the time. However, you can typically buff that stuff off. And, I use products that are as plant based as possible and rate very well on the EWG scale to make sure I'm not poisoning my body as much as possible. So, I was really hoping that wasn't the case. After further investigation, it would appear that I have a calcium deposit in my toe.

I have calcium deposits all over my body. Some I'm not affected by and others can be painful. Fortunately, this one is not painful, so we will just cover that bad boy right back up and pretend it's not there. I have no intention of poking the bear.

In recent months I've added a right hand manicure to the list. It's extremely difficult for me to even cut and file my own nails, so...why continue the struggle when someone else can do it better? I've been seeing Michelle pretty much exclusively for the past 6 years. She knows what's going on with me and I trust her to be gentle and treat me right. I think I have a signature manicure color!

After all of that, I made a quick stop at Ulta looking for a tinted facial moisturizer. I struggle with the concept of makeup. It's a love-hate relationship. I don't want to put a ton of time, effort, and struggle into something that makes my skin feel suffocated, heavy and makes me feel fake and like I'm wearing a mask. Then on the flip side of that, sometimes, I DO want to hide certain aspects and feel pretty. Tinted moisturizer over those spots tend to do the trick.

Well. I ended up leaving with a whole new beauty/makeup supply and ANOTHER member added to my team. A new "friend" and beauty consultant.

Normally, I shop online and get my plant based products delivered to my door. I decided though, that as my skin tone has changed again, I needed some assistance finding the right match. The lovely woman at Ulta and I had a lengthy conversation about my condition, what I was looking for and how my struggles with application all play together. She helped me pick out the products I needed and gave me her contact information to help me out in the future. The line she pointed me to is by Juice Beauty. Organic and plant based products. Woohoo! I looked it up on my EWG app and it rates a 1 on every product I looked at. BONUS!! It's a tad pricey, but, if I've learned anything while living with Scleroderma, it's that, if it's going directly ON my skin or into my body...I won't cheap out. Additionally, the amount I actually use on my skin is enough that this stuff is going to last me for quite some time! Check out the difference in these before and after pics when it comes to covering the spots around my mouth...

I left the store feeling happy and rather confident in my new discovery when BAM! It changed in an instant! A woman in the parking lot made a rude comment that I imagine was directed at me, referencing the fact that I wasn't wearing a bra. Now, let me let you in on something that's not a secret to anyone that knows me - I have no boobs. Bra shopping requires going to the little girls section and essentially getting training bras. Second, the clasps and straps that twist when I'm putting them on are a huge nightmare to deal with. Anything similar to a sports bra is equally, if not more so - nightmarish! Getting it on isn't as much of a struggle as getting it off. Ain't nobody got time for that shit!

(You're welcome 😂)

So, I've just decided to say "screw it". I don't have anything that can "get loose" and poke someone's eye out. Nothing is on display. I've not been aware of any stares or even anyone noticing prior to this incident. With all that said ... I let her comment get to me. I allowed the behavior of one woman, that I don't know and will likely never see again, bring down what was otherwise a wonderful day. Time to call in more members of "the team". I needed help propping my self-confidence back up. Thank goodness I have some great peeps in my tribe. A quick check in for a little reassurance and I was back on track. I went to bed grateful for the team of people I keep close. 

I've learned to read people and go out on a limb to connect with those that may add to my life as a whole, even if not on a daily basis. I've learned to make connections with those specific people. The Michelle's and Ulta women of the world. 

Sometimes those connections become deep and strong. Sometimes other connections fade. 

Doctor's can become your family. Massage therapists can become one of your best friends and gurus. New friends can become your soulmates. Long-time friends and loved can ones fade into the distance.

I've learned what friends are in my tribe and who I can count on in any given instant. Those people that prop me up when the shit is tough. The ones that can face the honesty and reality of my situation whether it's rainbows and sparkle shitting unicorns or the dark, gloomy mucks of hell. I've learned which friends will drop everything, without me asking, to be by my side in times of need or to help make my dreams a reality. It takes a team to help me live this life to the fullest. I am independent and take care of my own needs, and yet, as much as I'd love to, I can't do it all on my own. 

I leave you with this ... Wander. Believe. Live. Dream (big dreams). Love. Grow. Even if you need help to make it happen. Teamwork really DOES make the dream work.

Persevere. Rock on.

💋 🤘🏼

If It's Broke - Fix It. If It Ain't Broke - Don't Fix It.

At last posting I was headed for Baltimore for what I thought would be a few days. That turned into a week long trip that entailed meeting/adding a new doctor to my medical team, a horrible blood draw experience, a kidney biopsy, and an overnight stay in the hospital - ALL while spending the week in the company of and catching up with a dear friend.  Whew - what a trip!

As always, the staff and doctors I dealt with at Hopkins were wonderful and I am always sure to remember, that, while I DO have Scleroderma and would rather not, I am so very very fortunate for the sequence of events and timing that led to my diagnosis 16 years ago (16? Wow!!).  It all aligned to get me immediately to Hopkins with THE best doctor in the field of this disease. THAT scenario was, I believe whole-heartedly, THE key domino that allows me to be sitting here writing this post tonight.

I apologize.  I'm rolling up on the 12th anniversary of the life extending high-dose Cytoxan treatment that I underwent in 2004.  I tend to get a little emotional and retrospective about it all.

OK!  Back on track ... All turned out well, no new "Scleroderma" related issues - so-to-speak.  There continues to be some unexplained protein in my urine and some other blood work that causes an eyebrow to raise, but nothing to be panicked about. Instead, some things to keep a very close eye on and monitor frequently.

A week sitting around with funky blood test results looming, waiting for biopsies, and all around feeling exhausted and kind of like ass of course put my brain in over-drive. I'm not a panicky person. I don't easily go "there".  It was all just an eye-opener that I have been off my game for far too long. I've been talking about getting back on track, and yet, hadn't done but a day or two here and there to actually GET back on track.

Food.  What I put into my body has a HUGE affect on my disease.  Some people can get away with eating "junk" with seemingly few to no ill effects.  (Or so they think)  For me, that's not the case.  For a few years, I was ON IT.  I was miss clean eating queen.  Then, I stopped.  We won't get into the how or the why.  I just did.  Sure, I eat clean here and there.  I tell myself the lie of "I'll start tomorrow" or I justify this and that.

WHAT THE FUCK IS MY PROBLEM??? Why would I wait for funky blood work and possible kidney issues to snap me back to reality?

Again, we won't get into the how or the why. I just knew I needed to change things. I talked about it. I made half-ass plans. I "tried" here and there. That was in September, y'all! Two months ago. I still, for whatever reason have failed to fully get my shit together.

Do to the myriad of issues that surround my digestive process - I just have no desire to eat.  None. My esophagus doesn't always work properly, so just getting food into my stomach without it getting stuck can be less than ideal.  Then, once it's in my stomach, I have a lazy stomach that doesn't process it out quickly.  One meal can sit for quite some time.  Into the next day.  I literally can go days without being hungry because of this.

I weigh 95 pounds.  On a good day.  That's not healthy.  So, now I've been reminded, again, that I need to get healthy food into my body to help it to heal, fight off any other issues that can be lurking, and to serve me better ... and yet ... I did nothing more than think about it.

After walking away from dinner last Sunday feeling physically and emotionally crappy - it hit me and I proceeded to have a full-on meltdown in the shower.  The ugly crying kind.  I'm not making any progress because ...

I could care less about food.  Because I'm not hungry, I have no cravings.  Nothing "sounds" good and therefore meal planning becomes a chore.  If I get through the meal planning, the idea of prep work for food that I really no longer enjoy eating or may make me sick later - yeah, not what I want to do. Finally, sitting down to shove food into my pie-hole when I'm not hungry or craving it - makes it not taste good or an enjoyable activity. I leave most meals feeling underwhelmed and like I could have done something different with my time. Aside from good conversation, I am getting zero pleasure from any given meal.

Time for a new approach. Not really new. It's one that I discussed with "The Man" when I was at Hopkins in August, however, like I said ... just didn't take hold.

If it's broke - you gotta fix that shit!

Last week's realization of "why" I'm "failing" put me into gear.  Albeit slow gear, but into gear.  I spent the week researching recipes for smoothies and green juices - foods that my stomach can hopefully process more quickly and with less effort. I wrote my plan. I rewrote my plan. I researched more. I wrote the plan again.

Likely WAY more effort than need be - however, if I want this to be a success, I have to be meticulous and organized.  This process will involve more that just a healthy new eating plan for myself, my roommates want to take on a clean diet as well and since I do the dinner cooking around here, I'm ultimately taking charge of everyone's food!

Today, I went and bought food. All. The. Food, y'all. I know that eating clean can be pricey, so I tried a new store that has been toted as having healthy options and produce at reduced prices.  If it ain't broke, don't fix it mistake # 1 for the day.

I had no idea that changing something as simple as where I buy my groceries would be such a pivotal point to my day.  Holy hell, was I NOT ready for that?!?! It brought on an anxiety I had NO idea that I had!  I managed to finish the trip with my composure and a couple of bags of good buys and then got to the car and proceeded to have a full on cry.  (Is this my new Sunday ritual?  LOL!)

Why the anxiety?  The store wasn't organized the way I am used to.  There were WAY more people than at my store and while there were some good purchases, there just wasn't "my" stuff.

Then, the thought of being freaked out over something as "trivial" as a new store made me more concerned and I started worrying that this is just a "control issue".

You see, since my roommates came, I have become very aware of the fact that I like things certain ways. I don't think that's uncommon and yet, I don't want to be perceived as having to have things be one way and ONLY one way. When situations change, like going from living alone to sharing your home, it can become very apparent when you observe or hear yourself sometimes. Like, "really?  am I THAT uptight?" So, I'm working to let things that would normally "irritate" or "bother" me, go. At the end of the day, most of them really don't matter.

As I was in the car melting down and overanalyzing my discomfort from a "stupid shopping trip", I came to realize that I need to cut myself some slack. There are some things that I am stringent about. And that's OK. Some things DO HAVE to be a certain way. And that's OK. Not because I necessarily just "want" them to be a certain way, but because my life is easier to maneuver when they are. Sometimes it is imperative that things be the way I set them up.  Just so I can function. I shouldn't care what anyone's perception is surrounding that.

So, I wiped my snotty nose on my sleeve, drove to my usual store and finished my shopping.  Getting everything on my list.  Then, I came home and emptied my entire freezer, refrigerator and pantry.  I threw out almost everything that will not serve our bodies in a healthy manner and I reorganized the food to work the way I need it to.  Certain items have homes in specific places so that my hands can grab them easily and so that I can see the inventory of what's in stock without having to crawl on my elbows and knees.

I won't be afraid of being perceived as a control freak any longer. I am happy to work with and accommodate others on many things, but on some things, I just won't. I can't. It's that way for a reason. It works for me.  Why change it and cause undo stress and anxiety?

If it ain't broke - don't fix it.

The Life Waiting For Us When Things Go Sideways

It's easy to casually accept that tomorrow is not guaranteed.  People say it often and yet, still tend to go with life like there's going to be 50 more years.  Working long hours and spending weekends mowing lawns and doing yard work or house repairs.  Trying to climb the corporate ladder to make more money, to have a retirement fund, to put the kids through college, to have "stuff" - all with the plan that they can enjoy life when they retire.

When people reach "mid-life" there is frequently the increased awareness of one's mortality and so, we see people starting to live more freely, creating and checking things off of their "bucket lists" and throwing more and more caution to the wind.  Onlookers who haven't reached that awareness yet often dub others as having a mid-life "crisis" and in some sense look down upon them for behaving like teens again and/or shirking their adult responsibilities.

These scenarios can be difficult to navigate.  Working hard to "make" a life, accepting our impermanence, living - in and of itself.  None of it is easy.

I've said before that I was lucky at the age of 25 to have my "crisis" and be slapped in the face with the reality and honesty of my own mortality.  I immediately started living the life I knew I needed to.  Travel.  Adventures.  Whatever the hell I wanted.  Some, pretty big for me.  Some, just smaller day-to-day items.

I've wanted to see the world since I can remember.  When asked where I'd like to travel to, I say "everywhere."  I want to see everything.  I want to experience different cultures.  See how other people live.  When I was in high school, I came across a picture of Guam in a magazine.  It was beautiful. I cut it out and carried with me everywhere.  To this day, I can still visualize that picture in my mind's eye.  When I joined the Air Force, I was determined to be stationed there.  That never happened.

Seeing the world has remained my goal.  Until recently.  While I would love to see it all and check item after item off from my original "Life List" - a new reality has set in.  The reality that many of those boxes aren't going to get checked.  The reality that I need to re-write that list.  This is a harsh reality.  Possibly one of the most harsh I've had to accept.

This is a space in my life where I can no longer be blindly optimistic and have my head in the clouds. Others, trying to be helpful, say things like "you never know" or "don't give up on that" or the "this is you, you can and usually do anything you set your mind to" ... while I love them dearly for trying ... It's time be honest and realistic ...

Travel to anywhere "exotic" has to come off the list.  My compromised immune system won't allow for it.  I can't afford to get sick, tax my immunity, add more strain on my heart and chance taking long times to recover.  Lately, anytime I go back home to PA, I end up dealing with a cold or sinus issues that can take me up to a month to recover from.  Travel to other places may be worse.

Any travel via plane that is much beyond four hours per leg is a no-go these days.  I need to be able to spread out and shift and move to keep the aches and pains at manageable levels.  Not to mention the "bugs" one can pick up via air travel and then there's how the air pressures affect the body.

There are so many great things I love about traveling and yet, these days, so many things that make it difficult and force me to evaluate which trips are worth everything that goes into it?

Just planning for an impromptu trip to Hopkins this week to address new kidney issues, poses a whole lot of questions and planning.  Will I fly?  While that's faster, it's unknown how long I will need to be in Maryland, so, is it just easier to be comfortable in my own car than to chance having a rental car that's not suitable for me?

That's just a trip "up the road".  The more I mull over the dreams and plans I had for my life, the more I am becoming aware that there's a lot that's just not going to happen.  The more health issues that continue to pop onto the radar, the more I realize, I don't get much of a say in this aspect.  The more and more things seem to go sideways, the more I have to reconsider it all.  Some things will just have to be a certain way and I will have to accept that.  

Accepting that is a challenge.  Weighing the risks versus the benefits.  Deciding what things to just let go of.  What things can I leave this life having NOT done and be OK with?  How do I re-evaluate? How do I prioritize?  What new, more simple and attainable items do I add to the list?  How do I go from "I'm going to do it all!" to THIS?

Trying to be my best yogini self and walk the path, be in the moment, not compare, not judge, etc. brings about more questions than answers.

If I look at things in this specific moment, I know I have lived a good life.  I'm happy with what I've done, what I've seen, what I am doing.  If I look to the future, that changes a tad.

So, for today Citizen Cope is stuck on repeat in my brain, there's lots of introspection, trying to move forward the best I know how and a whole lotta WTF???

And, for once ... I'm NOT OK with that.

Single White Female

Pretty much all blog posts on here have to deal with the physical affects of a life with Scleroderma. Lately, a different plan has been formulating for this post.  Like most of my posts, it has been swirling around for days.  Maybe longer.  Fermenting.  Growing.  Evolving into what you now get to feast your eyes on.

Tonight I'm going to touch on how Scleroderma has affected me as a being, apart from the physical body.  How it has helped to shape and direct the emotional, spiritual, and personal growth and path I've taken in recent years.

The story will likely be long and at points, you may ask..."when the hell are we getting to the point? And what does this have to do with Scleroderma?"  Hang in there.  Trust me.  I've never let you down, yet.  Have I?

We need to go back a ways to start this one off.  Back to the days of childhood when life's possibilities were endless.  Back to the days when we imagined life going on forever and we're taught about fairytales and happily ever after that came with Prince Charming and knights on gleaming white horses.

I wasn't the little girl that imagined her wedding, played dress-up, or played with Barbies or most of the things little girls played with at that age.  I was the tomboy that imagined being a truck driver or joining the Army with my little best friend down the street.  By high school I had decided I would probably be a pediatrician, because, while I loved the kids I babysat and I rocked at it, I liked the idea that I could be around kids all day and yet, they would go home with someone else and my responsibility with crying, pooping, teething kids would be done for the day.

As it turned out, I did end up joining the military.  Then, I married young.  It was just part of the path. Shortly after marriage along came my desire for kids of my own.  I essentially wanted babies right out of the gate.  It seemed to be how the rest of the world lived.  You got married.  You had kids. Everyone seemed happy.  As in..."happily ever after".

I wanted that, too.  So much so that my first marriage ended largely in part because my then husband said "I can't live a life with kids".  In my second marriage, we spent $30k in IVF therapies to try to conceive a baby of our own - to no avail.  I finally cut my losses and resigned myself to the fact that biological children were not going to happen for me.

Our marriage continued along happily for a few years, filled with lots of laughter, travel, and spontaneity that we would likely not have had had we had children.  Eventually, that marriage ended, too.  My husband was no longer happy and needed to move on.

To say that I was devastated is hard for me to admit.  I like to think I'm a bad ass with my emotions and can get myself through anything without a scratch.  While I DID make it through the other side better for it all, I allowed myself to be wrecked for quite some time over that loss.

So, now, here I am.  Knocking on the door of my forties.  Single and refocusing my life on managing my health as my new number one priority.  It's not always easy.  Some days it's overwhelming.  Some days, I can't manage a lot of it on my own.

I have recently added a roommate to my life.  A male friend and his daughter have come to live with me to be extra help for me, while writing a new chapter of their own lives.  We're all looking for a "better" path.  Our paths are different in most ways and yet, we are coming together to help each other out.  It's hard for me to admit that I am not the independent woman I like to be.  I have to remember, though, that it;s not because I don't want to be or because I don't try...there are just plenty of things I physically need help with.  Yes, I can manage, but with struggle, frustration and anger.  This situation alleviates a lot of that.

To many, we are an unlikely set of people to become roommates.  There are skeptics on both sides of the house.  One such individual, not knowing me, voiced a concern that I might be hoping to turn this situation into a relationship.  This pissed me off.  That's not the type of person I am!  If I want to be in a relationship with someone, I will honestly work to make that happen.  Not try to sneak into it.   Now, I normally try not to let things others think or say bother me too much, and yet, for whatever reason, this has stuck with me for two weeks now.  I've mulled it over and over.  Then I've mulled it over some more.

If I am truly honest with myself, I don't want a relationship beyond the friendships I have in my life. The majority of the reasons are because of my life with Scleroderma.  I'm a big time realist and the things that come with this life are not things that will easily translate into a new relationship.  Hell, they didn't help keep the last two, that's for sure.

I know that my looks aren't what they once were.  I'm also aware that may never recover.  I don't have the desire to put myself out there and put my heart on the line when I know that, most of the time, our first lines of connection with someone else are via sight.  I didn't say all.  I said most.  I just don't have the desire to put that kind of effort into something that I imagine isn't going to get me anywhere.

Next I have to look at the list of things that don't make me your average woman and in turn would complicate most any attempt at a relationship.  Dating is usually based in some aspect on dinners, days out, finding common ground activities that you both like and can do.  That list is all quite skewed for me.  I won't go into it all because to do so makes me feel like I'm whining and that's not the case at all.  Let's just go with the general idea that the daily activities for the average person are not the same for me.

If I were to make it past those hurdles, comes the intimacy issue.  One that I've not heard many (if any) other Scleroderma patients discuss.  I'm going to be honest and put it out there.  The lady bits are broke as shit!  My last husband and I were married for 6 years and the last time we had full on intercourse was on our honeymoon.  It's not to say I can't enjoy myself, it's just to say the tunnel is closed to traffic.  I can't imagine many men are going to want to pursue THAT relationship.

I don't sleep well at night.  I get up a lot.  I don't want to share my bed and worry that I'm impacting someone else's sleep schedule every night.  I have enough stress about my own sleep, let alone being concerned about another persons.

I don't want to educate another person on the ins and outs of this life and take the chance of them discovering its more than they can handle AFTER I've become attached.  It's easier to just not go there.

Yes, I know all the lines people have about "you don't know until you try" or "don't sell yourself short" or whatever classic line comes up when someone has said they're done with relationships.

Here's the thing, yes, I sometimes miss the fun and friendship I had with my former husband.  When it was good, it was good.  We were great friends.  We had great fun.  There are still daily occurrences or "inside jokes" that only he would get without explanation and yet ... I wouldn't want that relationship back, nor do I want to try to build another one.  I don't feel as though I'm jaded or hardened.  I think love is great.  I think relationships are great.  I just don't want one with another person in that construct.  I have a relationship with myself and my Scleroderma that, at this point in time, require the majority of my time and energy. I have enough work just to live life that I don't have the time or energy to consider someone else's needs or feelings like that.  Because when I am in a relationship...THAT is exactly what I do.  I can't afford that right now.

This is me living MY happily ever after.  Living.  My goals and bucket list may be becoming less grandiose, but I still have plenty to strive for.  I still live a good life.  I have all of the things I NEED and most things I've ever wanted.  I have family that loves me.  A home that is my own.  I share it with two wonderful people.  I have friends that do amazing things for me.  I may be a little confused right now as to my purpose and where my path is taking me, BUT...you know what?  I have my own awesome damn horse to carry me on that path!  She's not white and that's fine!  White shows all the dirt!

My happily ever after may not be what I originally dreamed it would be...

And that's OK.

Arrogance? Denial? Blind Optimism?

This post has been floating around my brain for just over a month now.  It's taken some time to figure out what to write.  I've felt that I need to.  Writing used to be cathartic for me.  It was a way to keep a document of my journey with "The Big S" and a way for me to be there and help others going through the same thing.

In 2005 after the chemo treatment, I was a balls-to-the-wall Scleroderma awareness warrior.  I spoke to the Maryland State Senate to get a bill passed for more research on how autoimmune conditions affect the population.  Once that task force was created, I was on the task force.  I worked fund raisers.  I was invited to speak at events.  I wrote the newsletter for the DC Chapter of the Scleroderma Foundation.  I formed and ran the Scleroderma Foundation's Baltimore Support Group. I helped at the National Convention.  I participated in drug studies.  You name it.  If it was going to help the Scleroderma community - I was all in.

All while working a full-time job, sometimes going to college, raising teenagers, and continuing to battle flare-up after flare-up.

Those are all great and rewarding activities to be a part of, and yet, they can drain you.  As I conversed with and related to other patients and offered them support, I had a tendancy to take on their struggles with my own.  One can easily lose themselves in being a face of this disease.

The move to Florida allowed me to organically let those tasks, activities and responsibilities go.  It was a whole new world of people that didn't know me as a Scleroderma warrior.  They didn't know the disease free version of me AND this version of me.  They didn't witness the changes.  They didn't see the things I had "lost".  They just knew me as me.  They would learn of my limitations and my struggles, but they didn't see me the same way.  Or at least that's what my mind says.

The first two years here, I continued to struggle with varying symptoms and flare-ups.  At one point, we were looking at doing chemo again.  One week a month for six months.  My reaction to chemo would have meant that I would be in bed for six months straight.  I had had enough.  So, I decided to head in another direction.  After research and following the success of some other autoimmune folks, I changed my diet.  A 100% overhaul.  I went Paleo and had great results.  I reduced my medications down to three.  Eliminated some very vile drugs from healthcare plan and continued to, for the most part, thrive.

That was 4 years ago.  That's when I stopped blogging.  When I stopped dealing with Scleroderma (so-to-speak).  I was "just me" now. I was feeling mostly "normal" again.  Any flares that I had, I chalked up to being from damage already done to my body.  In my logic, lung and heart scarring that had already occurred would no doubt continue to cause some issues here and there.  My joints would continue to get worse.  I continued to chalk it all up to damage already done.

I had convinced myself that there was no new activity going on.  This was all from previous attacks and flare-ups.  Scleroderma was NOT going to rear it's ugly head again and have any hold or control over my life.  I had it under control.

Stress is big flare inducer for me.  While I feel like I have my shit together and I'm handling life well, my body apparently does not always agree.

If I look back over the past two years, I can see all of the stress that has built up in my life and I can imagine that every mini bump I've had has been a reaction to that.  It has in fact been Scleroderma trying to be heard.  I ignored.  This was NOT going to happen.

Roughly a month ago, the symptoms started popping up in a manner that would not allow for me to ignore.  I've been to my local doctor and on medications more in the last month than in the previous six years of living in Florida.   All begrudgingly, of course.  Like a little kid, I stomped my feet.  I doubled up my fists.  I cried.  I had full on meltdowns.  And then, I finally gave in.  I didn't have a choice.

 When I mentioned to my mom "it's not my first time at the rodeo with this disease" hr response was "yes, but the rules of this rodeo always seem to change".  She's right.  Now, I find myself scratching my head.  Wondering what path I take now.  I'm eating some crow and relenting that, no matter how much I feel like I am in control and I make the rules...I don't. That's not to say I give in or give up.  It's just to acknowledge that...as with ALL things in life...THERE ARE NO GUARANTEES!

This doesn't define me.  It's not who I am.  It's something I have.  Something I have to re-learn how to manage in a way that feels right for me.  I have to re-learn how to surrender to what is and work with what I've been given.  Accept things I do not want to accept, knowing that I HAVE to in order to live this life to the best of my ability.  Learning to work with the fact that, as a dear sweet woman I know has said..."my mind is independent, but sometimes, my body isn't"

Those are some hard truths to accept.  Some hard pills to swallow (yes, pun intended) for a fiercely independent and sometimes stubborn 39 year old woman.

So, with all of that said...I'm going to be dipping my toe back in the water.  I'll be sharing here some more and getting involved "out there" again.  First in my own healthcare plan of attack and then on a broader spectrum.  I'm not sure how or where...yet.

And that's OK!

Float Pod Therapy Challenge - 6 floats update

Ok.  Finally!  Here are some updates.  Hold on to your hats, y'all!

As a disclaimer, like the one posted at the heading of this blog ... I don't sugar coat.  I'm open and honest.  I don't want people to be embarrassed or shy about the things they may be going through due to their disease.  Its not our fault and nothing to be ashamed of.

Float #3 wasn't much more successful than float #2.  I have some sores on my hands and one on my elbow and the salt water was not comfortable.  Additionally, something we hadn't even considered was this ... I am post-menopausal and therefore my vaginal tissue is dry as The Mojave Desert ... which unexpected to me isn't a great combination with floating in a tank filled with 750 pounds of epsom salts.

The studio has a lubrication that can be used to cover any sores and cuts to prevent the salt water from burning.  It works on the lady bits, too.

Now that I have that all worked out, the next floats were successful.  No alarms on the phone.  No lady bits feeling like the are on fire.  No salt in the eyes.  It's all good.

Here is video of me floating ... It's nothing exciting.  Just floating

Now ... for a list of crappy Scleroderma items in my life (follow along, we're getting somewhere) ...

For years, 

• all of my joints have ached and been arthritic and my tendons are scarred, making my flexibility poor and altering my gait and how I carry myself.
• I have difficulty putting my socks on, shaving my legs, picking things up off the floor, etc.
• Squatting has been impossible.  
• My hands are a curled, gnarly hot mess and I've had surgery to remove knuckles and fuse the remaining finger bones together, to have some sort of a functioning hand.  Those fused "joints" swell and ache.  
• The big toe on my left foot hasn't been able to bend or flex in over three years.
• The shoulder and spine issues detailed in my first post about the pod.
• Chronic acid reflux
• Various heart and lung/breathing problems
• I have osteoporosis
• On my upper arms there are calcium deposits just under my skin.  They are hard an painful.  To the touch, it feels like there are BBs lodged under my skin.  I can, at times, pick them out and they come out as hard little bone like nodules.
• My circulation sucks.  At anytime the temperature starts to dip below 75° my fingers and toes start to get painfully cold and turn white, then blue/purple and become excruciatingly painful.  My hands become sore painful I can and do cry and my hands become useless.

Now, I told you all of that, obviously for a reason.  In what seems like a crazy, kooky, over night situation, I am seeing HUGE relief in the above mentioned areas of my health.  I shit you not.  It seems unreal, I know.  After doing research ... it makes perfect sense and I believe I have found a key piece to add to my ongoing self care healthcare.  Here's why ...

• Since last Wednesday, the bumps on my arms have softened and no longer hurt to touch.  When I told Annette to feel my arm and tell me what she feels ... her immediate response was a look of amazement and a "the bumps are less!!"
• The swelling and pain in my fingers decreased to the point that I can now use them to push the buttons on my key fob, when just last week I had to use my thumb.
• as I type this, I am sitting here bending and flexing my big toe.  Not full range of motion, but there's a huge amount of movement that wasn't there before.
• When asking 2 different people to look at my shoulders, both say that my shoulders are even, back and down.  Not forward and curling in like previously and my collarbones protrude less.
• The heaviness in my chest and need to occasionally stop to get a better breathe have subsided
• Since last Wednesday, acid reflux has only bothered me one night
• On Sunday morning, I left the house in flip-flops and a tank top, without checking the weather.  When I walked outside it was 60 degrees.  I was "chilly".  I was outside and in my car for 20 minutes before it dawned on me to turn on the heat.  No pain.  No tears.  No blue/purple fingers.
• I can do this  ....  it's not beautiful.  Its not perfect.  Yet, it's 1000 times better.
  
• My skin is soft and not flaky and dry and I haven't applied lotion in 6 days.  

There have been so many of these small, yet HUGE and significant to me changes that I have to be careful managing it all emotionally.  It can, at times, be overwhelming.  Its definitely hard to stay in the moment at the idea of what is happening so far and what could still happen in the future.

I'm not saying life is pain free, yet, it's a hell of a lot better.  I still find myself needing a quick nap most days.  I wake up with some stiffness and a sore shoulder.  However, not to the degree of before. If it weren't happening for me, I'd say its unbelievable.

When starting on this float pod journey I had no dreams of these results.  I really was just anticipating that the act of floating, resting, and reaching that zen state would ease my joint pain.  I really was just excited about the idea of zero gravity for my stressed and beat up body.  That idea was exciting.  I was not prepared for this.

I don't know that anyone anywhere has considered the health benefits that the pod can have just by virtue of not only floating, but soaking your body in magnesium sulfate (Epsom salt).

Research shows that a majority (if not all) of the symptoms outlined above can be the result of a calcium and magnesium imbalance.  We're told that we need to get more calcium in our bodies to help bone retention and growth.  It turns out though, that if you don't have enough magnesium, calcium isn't absorbed into your body properly and then just builds up in places like joints, tendons, soft tissue, etc., creating various issues.   Unfortunately, when we take calcium and/or magnesium supplements orally, for whatever reason, they are not properly absorbed into our cells.

Therefore, it stands to reason, that submerging our largest organ, our skin, in a bath of magnesium sulfate and allowing it to be absorbed in that manner could have some awesome benefits.

Or at least the logic that comes from my recent experiences lead me to believe so.  Nothing else in my life has changed.  Last week I was knocking on the door of a Scleroderma flare up and within 2 days of my first float THOSE symptoms disappeared and other major symptoms and maladies have seen some level of improvement.

After I finish this "challenge", my intent is to continue floating twice a week.  I will use any and all therapies that are natural and continue to provide at least relief, if not improvement.

Float Pod Therapy Challenge - Let's Just Pretend Today Didn't Happen

Each day's report is going to start with some updates about how I feel the morning after the float and then give details about how the current day's float went and how I feel at the time of the post.  I'll try to do the posts in the evenings.

So, this morning ...

I slept great.  Some of the best sleep I have had in years.  I also remember bits of my dream.  I couldn't tell you the last time that happened.  It was an odd dream, of course.  In it, in the middle of a conversation with someone, I suddenly realized that all of my fingers were working normally again and ran off to go find someone else to tell.  This morning when I woke up, that was the first thing I remember doing - moving my fingers to see how they were.  Still "crappy ass hands"  *LOL*

Physically, I felt like I had been hit by a truck.  Not necessarily as sore as I often have been in the past, yet, definitely my normal aches, a little more stiff than usual and moving super slowly.  I wasn't expecting this AND YET it is not at all surprising and makes sense.  Yesterday my body was loosened up by the float and then my massage was very deep and intense, followed by a chiropractic adjustment.  That's probably the deepest, most penetrative work my body has been able to receive in quite some time.  Of course there's going to be a "reaction".

Otherwise, I feel great.  Good energy.  Good mood.  Looking forward to today's float.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So, on to float #2.  We're pretending this float didn't happen and extending the challenge by one day.  Not that the floating therapeutic part of the float was bad.  It was just a hilarious smash up of comedic errors that made the whole thing a FAIL.  Ok, maybe not a complete failure, my joints did get some relief, but the zen, nap, extra mind melding stuff didn't happen.  The joint relief floating part wasn't in one big chunk of time, so the benefits for today can't really be "measured".

Here's what happened ...

For 15 minutes before you get in the pod, you shower to make sure you get all the oils and chemicals off your body and out of your hair.  Getting into the pod, I had a little difficulty relaxing because I was paranoid that I didn't get all of the oils off from yesterday's massage.  After 15 minutes, I got my brain quieted and I'm all relaxed, Lumineers radio playing softly on my phone and piped into the pod through the iPod connection and I'm just about to drift off and "ding-a-ling-a-ling.  ding-a-ling-a-ling...." The alarm on my phone goes off reminding me it's 1 p.m. and time to take my meds. (Apparently, scheduled alarms go off - even when your phone is in "do not disturb" mode. Noted!) Sonofamotherlessbitchin'goat ... as I all but shit myself and jolt upright in the pod, trying not to hit my head ... I scramble around, now cold and dripping wet and get to my phone trying to turn off the alarm ... when your hands are wet, the mothertrucking screen doesn't "slide" so well ...  After what seems like forever, I get the alarm silenced, mop up half the lake I've now left on the floor and manage to climb back into the pod.

Just as I'm laying back, water from my hair runs down into my eyes and my mouth.  Bleh.  Bleh. Bleh.  and "MY EYES!" ... Sure, there's a squirt bottle with fresh water specifically for situations like this ... but, let's stick with humor here and imagine me fumbling around with these crappy ass hands and the fact that I now can't see with the salt in my eyes ... finally it's just easier to fling the top open and grab the towel.

Ok.  Salt water off my face.  Hair blotted.  No chance anything is going to drip into my eyes or mouth.  Close the top and lay back.  But, now, my brain is all "What time is it?  I bet the time is up soon.  The water is going to start circulating soon.  Will I be able to shower and clean up the flood that I'm sure is still out there before the next floater needs to get in?  I'll just sneak around the corner in my towel and shower in the ladies room.  I hope I can keep the towel on and carry my stuff and don't run into anyone and flash them.  Aaannnd there's the circulating water.  Ready.  Set.  Go."

So, while my joints got a little bit of relief today, it was NOTHING like yesterday.  My mind certainly didn't chill and honestly, the whole thing just makes me giggle to look back on.

So, we're saying today's float didn't count - no measurable therapeutic benefits to report.  Hopefully tomorrow is better and not another script for an episode of a sitcom.

Update and A Float Pod Therapy "Challenge" - 1 of 7

Three and a half years since my last blog post.  The list of reasons that I stopped writing is quite long.  Through diet I had learned how to manage my condition and didn't feel like there was a lot to share.  Then, I just wanted to live life and not write about every Scleroderma event.  Sometimes sharing the ups and downs can be daunting.  Sometimes, I just want to deal with it for what it is, not dwell and I guess, in some way "forget about it" - not that I can.

Then there was a divorce and life got hard.  Then "hectic" and busy and wonderful.  Any Scleroderma related issues that have come, haven't been anything new.  Just recurrences of the same list of issues I've written about in the past.

For the most part my Scleroderma has been very manageable.  Typically just dealing with things that arise from the damage previously done, but no new Scleroderma activity.  It's expected that some things will continue to degrade without new activity just by virtue of the damage already done and the aging process in general.  So, even without new activity, the roller-coaster continues on the track.

I'm still on only 3 medications.  One for my thyroid and two for my heart.  I would like to not take these, yet, in comparison to the 23 pills I once took ... I won't balk at the three.  My diet is key here.  I'm so grateful to have learned this!

So, why am I dusting off the pages of Sclero Scoop and giving you something new?

Because it's awesome and the world needs to know and every Scleroderma patient needs to be privy to this!

A little back story ...

In early March, one of my closest friends, who also happens to be my massage therapist, opened Kodawari Studios where I act as the "behind the scenes" magician that manages tasks that she doesn't have the time for.  I put 48 hours into a 24 hour day.  I'm the mouse in her pocket.  The Pinky to her Brain.  Or is the other way around?  Either way, one night, we WILL take over the world.  Or not.  It might be too much work. ... Opening a business is no small feat.  It's a lot of work, a lot of hours, a lot of stress, a few tears and sometimes a whole lot of "WHAT THE FUCK?"  Having this new drive, tasking, and passion has been so good for my soul.  I feel a purpose again.  A purpose beyond being a woman managing a disease, a mom, a fur-mom, a decent human being, enjoying this life I was given, and doing what I can to be a positive influence for others.  It feels good.  It feels great.  Emotionally.

Physically, it's exhausting.

In true LoJo fashion, I threw myself into this whole-heartedly and let my personal care and well-being take a backseat.  My healthy diet and lifestyle were already challenged over the past few years and over the past month have just slid right off into the gutter.  Fast food.  Soda.  Sugar.  Alcohol.  All easy items that require no prep work for my crappy ass hands and my exhausted body.

I knew better.  Still, I didn't listen.  I poked the Scleroderma bear.  Quite probably triggering a flare-up.

Starting last night, the dreaded "itchies" returned.  The "itchies" that freak me the fuck out.   They freak me out enough that by midnight I was in the midst of a full-on panic attack.  Scratching my body, crying and hating on myself for going down this road.  I have a disease that would like to kill me and here I am fueling it?  *palm to the forehead*  I made a plan that "this stops now" and I'm getting back on track immediately.  I have enough struggles on a good day that I'm not adding to it and creating an extended calendar of bad days to deal with.  Finally, at 0200, I finally calmed and exhausted myself enough that I was able to fall asleep.

I woke up early to feed the horses, which starts any morning off on a great note.  Except that I found myself itching and scratching along the way.  Trying to remember to not let it get me and to remember the plan, I plowed on through....Prepping my food for the day, not rushing in order to prevent banging my hands around and causing more aches and pains, trying to not get frustrated with all the normal struggles that just seemed to be piling on by this point.  It's Wednesday after all. Wednesdays are massage and chiropractor days.  As painful as both have been in recent months, they really do help keep me moving.  Wednesdays are a much needed and beneficial day each week.  Last night we decided that I should add float therapy to Wednesday's line-up, with the imagination that I would get some awesome relief for these achey joints and followed by massage and chiropractic care, I might see some good results.

By the time my float time arrived, I was mentally ready.  I was stressed, overwhelmed, achey, exhausted, bordering on a meltdown and just needed to start this part of the day.

I'll admit, though excited, I was also a little nervous.  What if I got all freaked out in there?  What if this?  What if that?  In addition to just awkward body mechanics in general these days, my right shoulder is really problematic.  The whole shoulder structure is compromised due to fibrosis of tissues, tendons, etc. There is shortening of muscles, and alignment issues in my spine and the rib cage under the shoulder blade - all as a result.  I can't lay on my back, I can't lay on my stomach, it's difficult to reach across my body with my right arm.  I can't reach behind me.  I can barely touch my right ear and I can only occasionally touch the back of my head.  How was this all going to play out in the pod?

The float experience was pretty dang awesome.  A little trippy at first.  As soon as you lay back in the water, that's it, you're afloat.  No effort.  I haven't been able to comfortably lay on my back in ... I have no idea how long.  After a I realized I could just "let go" and let the water do it's job, I just floated.  Blissfully.  In essentially zero gravity for an hour.  My joints didn't hurt. They felt 'lighter".  My skin wasn't itching.  I fell asleep.  I didn't have reflux.  I didn't feel the need to move around.  I just floated.  I exited the float feeling more relaxed, lighter in my joints and just happy at noticing a physical difference.  IN ONE HOUR.

Immediately following my float, I walked down the hall and got on the massage table.  Here's where the sheer awesomeness of that float therapy became the spotlight for the day.  In the past 2-3 months, when I get on the massage table on my stomach, I have to have a towel under the front of my shoulder because it won't relax onto the table without excruciating pain.  Today, I was flat on my stomach, shoulder on the table, no pain.  I could feel tension, but no pain.  For the first time in a very long time, there was virtually no pain during my massage.  Annette is not gentle with me - I can't afford her to be.  I need her to push my limits and work my muscles as much as possible to keep them moving.  Most times I tell her things like "Why do you hate me?"  Followed with a lot of other colorful words and sometimes tears.  In the end, I always feel better, but the process can be grueling.  Not today.  Today, I enjoyed every stinking second on that massage table.  She was her normal aggressive self and I wanted more.  It felt good.  I was giddy on that table today.

I left the massage and headed down the street and less than 20 minutes after the massage, I was on the chiropractor table.  Typically, as she starts feeling the muscles along my spine, there are a couple of spots that make me grimace and all but shoot off the table.  In recent weeks, I have left there feeling beat up and ready to cry.  Later, I always feel better, but the process to get there sucks.  Today, not the case.  Not once did I feel any of the pain I normally feel.  She adjusted me and I was ready to go.  Just like that.  She said she could feel a huge difference in the muscles along my spine.  Normally they feel like hard ropes to her and she has to work with them to manipulate my vertebrae.  She said that tonight they felt soft and squishy in comparison.

With all of that said, as I write this, I can feel stiffness (no real pain) returning to my body and I have been mildly itchy tonight, but nothing more drastic.  I am tired and imagine I will be crashing hard when I close this laptop and make my way to my bed.

Due to the drastic and almost unbelievable relief I experienced after only one hour, we've decided to put a test scenario together.  I'm the perfect test case, after all.  I am going to float every day for the next 6 days and write about the experience and results.  So, stay tuned for tomorrow's report!

My Head Weighs 20 lbs!

In mid-July we spent a week in Vegas with awesome friends.

I was already achey before we left because I have stopped the prednisone.  No major aches, just enough to remind me they are there.  Not enough that I want to go back on the prednisone yet.  We didn't do a ton while in Vegas, but just enough to aggravate my body a little more.  By the time we came home, I was done.  Spent.  Sore.

As seems to be the case lately, I came back from vacation with a cold.  Something I should be aware of and maybe try to prepare for on our next travels.  They don't last long.  just a few days.  Enough to kick my ass a little more.  Nothing like being kicked while you're already down.

It's all good though.  I survived!

I was supposed to repeat my lung function test in July since the one in May showed a 10% decrease.  I have yet to do so because I don't want remnants of the cold to affect the test.  Also, because, quite honestly, I'm not sure I want to know if it's gotten worse again.  Sometimes, ignorance IS bliss.

My shoulders and back have been bothering me more lately.  M left shoulder seems to "catch" from time to time and makes a popping noise when it releases.  Fun!  I think it's because my alignment has changed because of arms, hands, and wrists.  It's hard to explain in words, but visually, you can definitely see it.

Then, there's the 20lb head.  I can barely lift my head to turn over in bed at night.  My neck hurts and seriously feels like my head ways much more than it actually does.

So, my awesome massage therapist and friend has been seeing every other week instead of once a month lately and I've unfortunately, been using the "good meds" to sleep at night.

And, surprisingly, I still consider this as feeling "good"

Six Month Check-up

My appointment was on May 29.  I'm a little behind with the update.  I was off visiting my family after the appointment and just got back home a few days ago.  Since then I've been too lazy to post.

The appointment went EXCELLENT ... overall.

He said I look great!  My skin is doing well and I have noticeable laugh lines.  Usually a bad thing, but in this case it's good because it means my skin is "relaxing" a bit.  The only positive side affect of having Scleroderma was that it made my face taught and made me look younger.  I'll take the laugh lines, though!

We discussed Boniva for the osteoporosis.  Fortunately, I was able to strike a deal with him on it.  I am going to try diet and exercise for the next year.  No Boniva.  If I can reverse some of the bone loss, we're good.  If not, I will agree to take the Boniva.  Wish me luck!

My lung functions has decreased.  By 10%.  NOT what I wanted to hear.  However, I'm not freaked out.  It could be that I used a new lab this time.  I have to repeat the test in two months and go from there.  If it's the same in two months, then I have to get a high-res CT scan and we'll go from there.

Everything else looks good enough that I can ween off the Prednisone, decrease the Norvasc, AND I don't have to travel to Baltimore in November ... as long as I establish myself with a local rheumatologist. Then, I can see that doctor for my November appointments and see the man in Baltimore in May/June, when the weather is warmer.

All in all, a pretty OK check-up.

And I'm OK with that!

I hate "the itchies"

For the past few days I have been I-T-C-H-Y!  My face has been tight and dry and itchy.  My arms have been itchy.

So much so that I've been doing multiple lotion applications during the day.

I wish I could say it's the weather, but it's Florida.  It's humid.

What I CAN say is that it's been a very stressful week.  Because of the stress and the fact that I have no will-power, I have eaten more than my fair of shitty food.

Stress + shitty food = skin flare?  I hope not.  Likely I'm just being paranoid, but when the itchiness sends me mentally back to 2005-2006 and I start feeling a little panicky it's hard not to worry.

Yearly Check-ups & Osteoporosis

It's my birth month, so it's yearly check-up time.  It's a good way to not forget to get them done.  

I have had my pulmonary function test (PFT), bone density scan, pap smear, and a consult with my new cardiologist.  I'll have my monthly blood work this coming week.

I have been apprehensive about doing these tests here in Florida.  I have had a great medical team back in MD and wasn't ready to start over.   In MD all of my specialists have worked with my rheumatologist for years and know how Scleroderma works.  They know how to treat it.  I never have faith that new doctors will even know about the disease, let alone how to manage it.

I have been pleasantly surprised!  It was odd being the youngest person, by decades, getting a bone scan, but the technician was awesome.  The results of the test were not.  I have osteoporosis in my hips and my lumbar spine.  I've got the bones of a 70+ year old.  Yay.  I'll talk more about that later.

The PFT is always my least favorite test.  I dread it.  It makes my nose run and my lung rub shows up.  However, the lady that performed this test was awesome.  She was educated on Scleroderma and how it has affected my body.  She knew what I was talking about!  What's more awesome is that the pulmonologist that she works for, just transferred here from Hopkins about a year ago.  He knows about Scleroderma AND works with a rheumatologist that has worked with scleroderma patients!  My heart is all a flutter!  Well, of course it is, I have an arrhythmia ... but now it's a flutter for other reasons!

The pap smear.  Well.  The test itself sucks.  I don't care what anyone says, the Scleroderma has affected my lady business, too.  Add some menopause ... and ... well....  Let's just say a pap smear or losing my virginity ... running a pretty close race on the comfortable scale!  Regardless, the nurse practitioner who does it is AWESOME.  I just love her.  Oh and the results came back normal.

So, all in all, it's been a pretty ok month for tests and building my medical team here in FL.

Now, the osteoporosis..  Yeah, not happy about that.  I know the appointment with the man in a week is going to be fun.  He's going to suggest Boniva or Reclast or something like it.  THIS does not make me happy.  More drugs.  More drugs that have horrible side effects and not necessarily great reviews.

I have a plan of attack.  I know that eating better makes me feel better in regards to other symptoms of my disease.  I know that a Paleo or "clean" diet often times alleviates autoimmune issues.  I'm my own proof.  I did some research and found some studies, reports, whatever, of women fighting osteoporosis with the Paleo diet and weight-bearing exercise.  There are also studies that show hunter gatherer women don't have osteo issues like women in developing countries.  So, my plan is, for the next year, to make sure I'm getting enough of all of my vitamins (because osteo is about more than just Calcium), eating a clean diet, and walking - a lot!  If, in May 2013 my bone scans are worse, then I will relent and take the horrid drugs.

Oh and I'll be cutting out caffeine.  I'm working on eliminating Pepsi from my diet, too.  It won't be easy. Many even say that with everything going on with my health that I deserve a vice.  I deserve something that makes me feel good.  I'm having a hard time with that approach.  Don't I deserve instead to not shrink by up to 6 inches?  To not worry about breaking a hip just from driving my Jeep?

I think my thought process isn't going to be about what I deserve to make me feel good, but what I deserve to be healthy.  To not be forced to take horrid medicines.  To watch my life pass me by because I'm stuck with another crappy disease.  When I know that I can make a change by just changing what I eat, why wouldn't I at least try?  What's it going to hurt?  Certainly, not a damn thing.  Eating healthy has never caused harm, to my knowledge.

Like I've said before, I'm not delusional and convinced that I'm going to be my old self again.  The damage that has been done by Scleroderma isn't going to go away.  The scarring is permanent.  It will likely shorten my life.  However, I can reduce the chances of new symptoms.  I can cause old ones to disappear.  I can live the hell out of this life and not let one more damn condition slow me down or sideline me.

Fuck that!  (Sorry for the F bomb, folks)

So, we've done our first 5K and we have at least 3 more already scheduled.  Possibly 4.  We're walking every week and trying to get a 5K in once a month as motivation and to support good causes while we're being healthy.

Hear that Scleorderma and Osteoporosis?  You can SUCK it.  LoJo's kickin' ass and taking no prisoners!

Stress Induced Flares

I know. I know. Almost three months without a post and I can't come back with anything positive?

No worries, this isn't a post full of complaints. It might be a fair mix of good and bad.

I'll start with the bad. While I like to think I'm a tough girl and can handle most anything thrown my way, my body would disagree. Since my stitches came out, there has been one busy thing after another. Our son graduated from basic training, visitors were here for two weeks, my dad was in the hospital for a month and a half and I ended up taking a two week road trip. Alone.

One week was to deal with family affairs. The second was a vacation.

By the time I reached my vacation destination, I was exhausted, waking with large joint aches & pains, and had developed 3 fingertip ulcers.all stress induced, I assume.

I haven't had fingertip ulcers for over 2 years. Only knuckles ulcers. The two have different causes, which are indicators that this mini-flare was all stress related. I call it a "mini-flare" because, now that I've returned home most everything seems to have quieted down.

Except for ............. You guessed it ... The exhaustion. What's new, right?

So, even though my mind says one thing - that I'm strong and can handle anything thrown my way, Scleroderma likes to remind me otherwise and let me know it's still hanging around. Just for old times sake?

The good news is that my right hand has healed well. I can do some things I could not do before. Some things continue to be a struggle, but overall, things are much easier.

I'm OK with that.

Can They Fix My Elbows?

The new hand is still working out well.  It is FAR better than it was before.  Thank goodness for that.  I am really appreciating and enjoying the relief.

What I'm not appreciating are the ulcers forming on my elbows.  They start out as really deep, dry, almost scab-like skin.  Then they turn into sores or ulcers.  That, like my fingers, can last for months at a time.

I've been noticing that my elbows were tender the past few days.  By this afternoon, the right one is sore enough that I can't prop myself on it in bed.  I have to roll over with caution and care.  Hopefully, they heal quickly.

Today's afternoon nap ... 2 1/2 hours!  Holy cow!  I was feeling pretty energetic yesterday and today.  Getting a lot accomplished.  Yesterday's nap was just half an hour and did the trick.

Today, by the time I laid down at 2:30 I felt like I really had zero energy.  Tonight, I dont just feel like I have zero energy.  I actually do have zero energy.  I just want to sleep some more.

Which is a BAD thing.  I don't even have the energy to make dinner.  I can't even pull together a recipe because I'm all foggy and cant focus.  I just want to close my eyes some more.  I've been making nothing but healthy, clean meals for the past two weeks ... tonight we're eating crap.  Pizza Hut will be delivering to our front door.  I think I'll ask hubby to throw together a salad to go with the "crap" so I at least get something healthy in my there, too.

Hopefully tomorrow I'll be back on my game.  I don't want to fall into the bad food rut, again.

Right Hand Arthrodesis is a Success!

I wrote this on the plane on the way back from Baltimore on 1/27/12, but had yet to ost it because I was waiting for pictures to go with it....


Transformation one is complete and deemed a HUGE success.  The seven weeks of healing were long.  V-E-R-Y L-O-N-G.  Very worth it though.


On Monday one pin "fell" out at home.  It was already loose and didn't hurt at all.  In fact, I didn't even know it had fallen out until I saw the blood on my finger.  This morning the remaining pins were removed by my awesome hand surgeon, Dr. Spence.  These last two pins were a little painful coming out, but nothing a little holding my breath and clenching my teeth didn't take care of.


Immediately after my appointment, we headed to Kohl's so I could take advantage of their jewelry clearance.  Let me tell you, I did!  I got five new rings to wear on my middle finger, like I used to love to do, back in the day.


I now have a "functioning" right hand.  My thumb isn't flexible like it once was, but it's ok.  My fingers don't straighten, but it's ok.  My fingers don't bend in the middle, but it's ok.  They wont get ulcers on the knuckles anymore, that's ok.  MORE than ok.  My grasp is weak, but it's ok.  My fine motor skills are lacking, but it's ok.  Though I'm still limited in some ways and always will be, that's not important today.


Today, what's important is what my hands CAN DO.  That in and of itself, is completely and totally amazing.


Just seven weeks ago, I had to use two fisted hands to hold a drink.  Today, I can hold some smaller cups and bottles in my right hand alone.  I can fit my hand over the top of a small fast food drink.  (Don't worry, it was iced tea)


Since 2010 I have adopted Lily, Cooper, & Gretchen and until five weeks ago, I had never felt their fur on my fingertips or on the palm of my hand.  Now I can pet them and feel how soft Lily is, how fluffy Cooper is, and how Gretchen has typical, course, German Shepherd hair.


Driving my car was becoming difficult.  I had to force my fingers around the steering wheel.  Parking lots and backing into the driveway took much care.  Now, my right hand comfortably fits around the wheel.  Steering is still a little difficult as my gripping ability is now drastically altered because of the lack of flexing ability at those middle knuckles.


I can wear rings again, I can more easily cut and file my finger nails.  By the end of the weekend, I have a funny feeling that I'll have painted nails, too.  I can use lip gloss out of pots.  I can loosely tie my yoga pants.  It's not a great tie, nor will it ever be, but it keeps my pants on while around the house.


I can scratch an itch with my fingernails.  I can get goop out if the corner of my eye using a fingertip.  I can scratch the inside of my ear without needing a Q-tip or pen cap or something of the sort.  I can kind of sort of pick nose.  Yep, I just said I pick my nose.  I think most people do, just nobody wants to own up to it.


The list continues to grow almost daily.  Things that I've either given up on in the past or struggled like hell to do.  It certainly does help with appreciating the small things.


Now, life hasn't miraculously become rainbows and butterflies.  Some of the same shit is still shitty.  There are some new limitations and challenges, but this post isn't about that.  This post is about the awesomeness that I am experiencing.  I'll save the the other stuff for a day when it's bugging me and things are rough.  Right now, I just want to ride this high for awhile longer.


Here are some pictures of the process.

My hands prior to the arthrodesis.  They didn't open
or close any more than this. In these pictures I have two ulcers
on my index and middle fingers and one on my ring finger.
Those ulcers would last for months at a time and be
excruciating.

This is what my hand looked like afte the surgery.  You
can see the incision marks where my knuckles were.
The blue things are caps on the pins that run from just
at my cuticle, through my bones just past the incision
marks.  Those pins hold the bones in place while they
grow together.

This is the final product.  They don't straighten any more
than that and the fingers don't bend in the middle.
They still do bend at my hand allowing for some grip
and much added flexibility at that joint.