Monday, June 8, 2020

Can We Get a “Pass”?

Happy Monday, My Slayers & Slayer Lovers! It’s been a “Monday” already!

I was planning to post something meaningful or a hack today, instead, I’m going to go with ”life on the farm” and the funny that comes out of that. 

I’m a firm believer that if one is saddled with a load to carry throughout life, like living with a chronic illness, that they/we should then be given a “pass” on a bunch of the other “stuff”. Don’t we already have enough to manage? Can’t we get a break in some other areas?

For example, we should not ever have to experience “the Mondays”. ESPECIALLY if we are not working or are in isolation of any degree. If all of our days sort of run together, if you will, there should be no “The Mondays”. There just shouldn’t. 

And yet, today, I had one. In a big way. In the first 30 minutes of being upright. 

Let me just first say that the weather in Florida went from being lovely (for all of three days) to now being a hot sticky sweaty teenage boy’s locker room. At 0800. 

I go to feed the horses and walk forehead first into a spiderweb. That in and of itself isn’t so horrible, except that a)I’m sweaty and sticky so the web doesn’t come off easily b)having shaved my head, the fuzz holds onto said spider web quite well, so I just kept getting tickled by the damn thing. 

After my paddock dance and rub down, not five minutes later, when feeding hay, I stepped in a fire ant mound. We use slow feeder hay bags and the last one I was filling was not opening easily. I was fighting to get it open when all of a sudden fire on my foot and ankle to which I yell (think Forrest Gump) “OOOOOWWWWW SOMETHING IS BITING ME!” ... while still trying to put the hay in the hay bag, dancing around trying to get 20 fire ants off my foot without stepping in more. I ended up just tossing the hay in the hay in the stall and got the ants off my foot. Got the rest of my wits back about me and, as much as I try to co-exist with nature, unapologetically, I broke up the mound they built overnight in some wet hay left after yesterday’s rain. 

Fire ants & mosquitos are two critters I have zero tolerance to co-exist with. Forgive me Buddha, The Universe, whatever. 

You can laugh at the images of me dancing with spiderwebs and trying to manage bites, but being too stubborn to just throw the hay. You can really laugh at the conversation that ensued when I reached out to my friend for her fire ant bite home remedy ... “I have never in my life put meat tenderizer on literally anything except myself” πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚

A single bite can make whole foot swell up. So, it’s a good thing I have class and “geek work” to do today, because I’ll be inside unable to wear a shoe. 

Persevere. Rock on!


(Foot pic is 15 minutes after the incident. Now the red spot on my ankle is at least twice that size.)


Friday, June 5, 2020

Go BIG and THEN go home

One of my favorite sayings in regards to my life is "go BIG and THEN go home" ... because thats just how things seem to work for me. Even when I have small things plans, it's not unusual for shit to spiral into something bigger and then when I make it through whatever it is, I HAVE to go home and rest, recuperate, and recover.

This will be no different. As of today, I have traveled to 49 of the 50 states. Alaska being the only one I'm missing. I've been putting it off because it will require significant planning to ensure I stay healthy and safe AND because I imagine it will be a once-in-a-lifetime trip - I'm going BIG and making sure I get as much of the experience as possible.

Thus far I had loosely planned to fly into one city, explore the state, and then fly home from another. Now that I have #roamingjoan in my life, the idea of flying anywhere just doesn't interest me. I've always loved to road trip and see everything there is to see along the way. That gets daunting and expensive when you are trying to cover a specific number of miles and/or reach a specific hotel on any given day. Camper travel opens the possibilities up SO much!

In 2022 I turn 45. What a great year to mark state #50 off my list? I've already given "the boss" my vacation notice that I will be taking the summer of 2022 off to make this trip happen.

I'm going BIG and THEN going home and resting, recuperating, and recovering.

Bat shit crazy? More than likely. Will it be easy? Absofreakinlutely NOT. Scleroderma slows me down in so many ways, every day. That doesn't mean I'm giving up on ALL of my dreams. Some, yes. Others, I adapt. I hack. I modify. I figure out how to make shit happen! Will there be days where camper life will be ALL I do? Sure will. That's why taking home on the road will be such a gift!

"Fight the good fight, to live the good life."

or ...

Persevere. Rock on.


Thursday, June 4, 2020

BEST Rheumatologist EVER

I was damn lucky to live in Maryland at the time I developed symptoms of Scleroderma. Dr. Wigley saved my life.

I was diagnosed with Hashimoto's at 19 or 20 after an almost 2 year fight with military doctors.

Though reluctant, I went to see my PCP when I started experiencing Raynaud's a few years later. I was lucky that he knew to run some tests to look for "some extra things". From those tests he knew something was up, and admitted he didn't have the necessary experience or knowledge, but knew I needed to see a Rheumatologist.

That Rheumatologist diagnosed with me Scleroderma in my first visit and also admitted he had no experience with the disease, but he "knew the best doctor in the world for Scleroderma" and sent me to The Johns Hopkins Scleroderma Center to see Dr. Wigley.

I hit pay dirt. Dr. Wigley has been such a great leader for my medical team. Always honest. Always open and willing to work with me if I had questions or ideas that were outside of the norm.

When I moved to Florida in 2010 I continued to travel back to MD to see Dr. Wigley, but looked for a rheumatologist closer to home as the travel at times was daunting. Unfortunately, once you've been seen by "the best", nobody else ever seems to measure up. I never built the relationship or jived with anyone like I did Dr. Wigley.

Now that I have #roamingjoan and travel will become easier, I have decided to go back to Dr. Wigley. When I reached out to him via email this week he responded in less than an hour with "Great to here from you. Look forward to seeing you again. Right now the coronavirus has our clinics closed but may open in July. Contact to setup follow-up plans."

I love this man!

Persevere. Rock on!


Thursday, April 30, 2020

The Unknowns and the Knowns

#tbt, my Slayers & Slayer Lovers!

December 1-20, 2004. High-dose Cyclophosphamide treatment that would hopefully halt my disease progression and extend my life beyond the projected one year I was looking at. No percentage rates for success. It was a study treatment. There was also the possibility of death. Catching any bug during the process could be fatal. I was advised to put my affairs in order. It made sense either way. I made all the necessary plans - living will, will, good-bye letters. Thank goodness I never needed to use them.

Treatment began on December 1. I was isolated in a room for the first 5 days. Purell dispensers were mounted EVERYWHERE. Outside each room. Inside each room. I was able to be mask free in my room. Anyone entering had to be masked and use Purell upon entering the room. If I left to walk laps around the floor, I had to be masked. The only smell in the air was Purell.

On Dec 6, I was discharged from in hospital to go to “IPOP” a mix of in-patient/out-patient care. I came to the hospital every morning for vitals checks, various infusions, and monitoring. At the end of the day, I was able to go home.

Straight home. ZERO trips to any public place. Always masked in transit and at the hospital. Everything smelled of Purell. To include my home. My husband had gone to the extent of purchasing a Purell wall dispenser for our home - to help keep me safe.

Today’s current situation brings me back to that time quite regularly. As a result of the original treatment I have an aversion to any hand sanitizer that smells like Purell ... it makes me nauseous and quite honestly all hand sanitizers give my skin the heebie jeebies. I use them none-the-less - in an attempt to stay safe.

Since this whole health situation started I have been receiving a couple of messages a week from Slayers asking my thoughts on all of this.

I’m smart enough to say that I don’t have clear answers in regards to the political nature that this has taken on. No matter what was or wasn’t done, someone will bitch about it. Someone somewhere will always bitch even when hit with a golden stick. Either not enough precautions or too many precautions. A pandemic run amok or “they’re” trying to take away our freedoms. They didn’t protect us or they tried to control us. China was out to get us. The list goes on. And it will continue to evolve and take on new narratives as things unfold.

What I do know is THIS: 
  1. if the numbers from here are inflated, even by 50%, the facts at the end of the day are still that this is a world-wide health concern. Folks that are blessed with the luxury of healthy bodies and immune systems may not be concerned. They may only be carriers and never get sick. They may (and do) liken this to the flu. For them, that may very well be the case. For them, I am happy.
  2. Individuals with autoimmune, lung, and/or heart conditions do not fair well if they contract this. 
So, others may (and will) continue to cogitate (thank you, Kathy!) on the various conspiracies, overhype, or “the man’s” effort to put the people down. In doing so they seem to mock those that have compromised health and may even see them as expendable so that life can return to normal. So that people can go back to doing what they want with nobody telling them what to do.

That’s OK for them. They all have a place. Just not a place with me - not in this situation. For me, I will likely now look at things differently going forward. While I don’t like to live in fear, I will be living with a new hypersensitive caution. You see, this is much like that time back in 2004. The difference is that, then, I had a timeframe and the expectation of a new immune system. Though I’m mostly stable, now, I have more health issues than then and no timeline. This will be a new on-going concern for health compromised folks like myself.

It’s the same. It’s different. I’m smart enough to say that I don’t know. So, while I don’t know, I’m using the time to find new perspective and find a new balance in life going forward. I’m embracing the quiet, crawling life here at the farm - I DO pay a mortgage to live here and moved here for the peace and serenity after all. I’m also embracing the new uneasiness that I’m feeling surrounding travel now and using it as a catalyst to bite the bullet on life-long dreams of living periods of my life as a traveler - on the road in a camper.

I’m using this to find growth. To let things and people go in other directions. To be sad. To be angry. To be scared. To do nothing. To do new things. To try old things. To sleep. To heal. To educate. To learn. To guiltlessly veg with the television. To read. To plan.

Oh, the planning. Though tomorrow is NEVER guaranteed and we live for this day, we also plan for tomorrow. I’m planning for tomorrow’s that continue to be filled with giving back to this community. In old ways. In new ways. In ways that allow me to go where “the need is so great” ... while having roots and wings.

With ALL that being said ... my answer to the recurring questions is - I don’t necessarily know. Trust YOUR feelings. Acknowledge them. Feel them. Work with them. Let them help you. Then ...

Persevere. Rock on.

Thursday, April 16, 2020


This blog is being updated over the next week or so. Backdated posts will be added from Facebook posts to allow for folks that don't have social media accounts to follow along.

Please be patient!

Sunday, November 19, 2017

Finding New Abilities Post Amputations

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

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

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

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

Those are “minor” issues though… 

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

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

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

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

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

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

Persevere. Rock on!


Sunday, November 12, 2017

48 Hours Post Finger Amputations

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

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

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

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

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

I have to wait until Wednesday to remove the bandages and clean up the area. It’s going to seem like an eternity until then as my fingers already feel they’re suffocating because they’re in lockdown. 
LOL. If that’s the biggest part of the struggle going forward - I’ll take it!
Enjoy your Sunday, y’all!
Persevere. Rock on!