Tuesday, October 31, 2017

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!

Saturday, October 28, 2017

Nothing Is Carved in Stone

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

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

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

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

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

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

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

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