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.
💋🤘🏼

UNDER CONSTRUCTION

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!

Finding New Abilities Post Amputations

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

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

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

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

Those are “minor” issues though… 

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

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

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

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

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

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

Persevere. Rock on!

 
 

48 Hours Post Finger Amputations

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

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

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

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

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

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

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

Enjoy your Sunday, y’all!

Persevere. Rock on!

Amputation Day

Post Surgery Video Update

Esophagus Stretching

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

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

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

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

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

Persevere. Rock on, Loves!

Finger Amputation Consult

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

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

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

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

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

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

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

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

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

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

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

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

Persevering. Rocking on!