WARNING: This blog may contain some scary descriptions and images. If you're a Scleroderma patient and want to read on, please do so with an open mind. Hopefully my experiences can help you, please feel free to poke around and use what you can!
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!
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:
Fight - do I need to fight this thing?
Flight - do I need to run from this thing?
Freeze - am I just going to stay put and see what happens?
Food - do I eat it to fuel my body
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
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.
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."
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:
you have no flexibility in your hands or wrists to grab said toilet paper
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!
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 ...
