Now I really did it :((

[Austina]

Hello lovelies

I hope your appts went well today @missy. It’s a lot to deal with in one day. FWIW, if I were you, I would speak to the German Dr., if only to get some clarity on treatment options. If nothing else, he may be able to ease your mind.

Low activity on the thrill-o-meter, went to get more rocks, and went in the pool.

We’re going out to lunch with our lovely Colombian neighbours tomorrow, then Trivia in the evening.

 

[missy]

GM girls! We are one cycling trip away from 8,000 miles for the season. Woohoo. Unfortunately looks like we won't be cycling much beyond this weekend or so. More on that below. But 8K is not a bad run...lol I mean cycling season

@Austina thanks. Two went ok and one was rescheduled. The hand surgeon appointment did not go how I wished it would have but the truth can be hard to face. So I am facing it and hoping for the best. I would love a day with a low thrill o meter LOL XOXO

@marcy thank you for that info and thank Marty again please. And thank you for your compassion and kindness. It means a lot to me. Fingers and toes crossed. And girl, your photos are spectacular. (((Hugs)))

@MamaBee big hugs for a good infusion at the end of this month. Thinking of you

@Slickk thanks for all your warm support every step of the way and big hugs and much love to you and your family

@canuk-gal I hope you get to enjoy some cycling from here to the end of the season because looks like we won't be due to surgeries and radiation but more on that below. I won';t cry for myself but I will live vicariously through you while we cannot be active. And I hope all is well with your family and IIRC your DS was in search of a house? I'm sorry my brain is a bit fuzzy on the details but know I am thinking good thoughts for him

@springerspaniel our tree has lost most of its leaves...winter is coming. Hope all is going well

Hello everyone else.

Forgive me for a longish post. A lot has happened between Tuesday and today. And even more tomorrow but one day at a time.

Yesterday was hectic but the endo appointments went smoothly (endo AM and hand surgeon PM). Unfortunately after we got home and one hour before my supposed appointment with the RO his office rescheduled my 11AM. The staff messed up and never should have given me that appointment. So that appointment was rescheduled for friday where I get to tell him all this. And I pushed hard to get the RT soon and now we have to push it back and I hope he is not mad. Dr W wanted me to do NA before RT but I told him no and now I have to tell him I changed my mind. I hope he isn't mad at me. More on the hand surgeons appointment and why everything is now being changed.


I saw the hand surgeon yesterday afternoon (he is a world renowned expert in Dupuytren's and I have been seeing him since 2021) and unfortunately he is insisting I should do needle aponeurotomy (also known as needle fasciotomy) before I do radiation therapy. Turns out my pinky is bent 38 degrees (!!!) and is too severe a bend to leave as it will only get worse. Darn.


So this delays everything. And I was already given a date for my mapping (before RT). So now I have to contact the RO's office and this complicates everything and pushes me likely into next year. As there is a healing period with NA before I can do RT. And my NA date is not til mid November which I wish I could push up but he is super booked. Sigh. I am anxious to get this all over with but these things take time so I have to wait and I am so nervous about it all. So that is my update.


This friday we shall see if Dr W is angry with me. And how this is going to impact my radiation. Dr P said there is no proof RT works but he does agree I should go for it after NA. It can help. Maybe. He isn't convinced either way. And to make matters worse. Dr P is retiring within a year or so and that is bad news for anyone with Dupuytren's. He is simply the most skilled surgeon for this awful disease. It's a blow to all of the Dupies. He deserves to retire (he is seventy eight yo) and he has helped many many thousands of Dupie patients over the decades. But sadly he has not been able to find a replacement yet. He told me he is looking. I pray he finds someone competent and caring but for sure they will not be nearly as good as Dr P


Today we are traveling 2 hours to see friends who are in from SC and we are going to one of the largest aquariums. Looking forward to it. Even looking forward to the long drive because it is nice to listen to music driving in the car as long as there isn't a lot of traffic. The movement lulls me to peaceful thoughts. Usually. We shall see about today as I do have a lot on my mind. And if you read this far thank you and sorry lol

I hope everyone has a great day

Leaving you with a few photos over the past two days. XOXO




Yesterday at the drs appointments...people say no one notices anyone else's appearance but no. Not my experience. Everyone commented at the endo's office how pretty I looked. I am laughing because Dr J said your hair looks darker. Truth is it is not darker at all but because I had it down (it's usually pulled back) he perceived it to be darker. I told him the truth and bless him he wanted to try helping me raise my ferritin but there is no way as it is genetic and I have tried everything. But I do appreciate his wanting to help me. The techs all said how beautiful I looked mainly because they are used to seeing my bare face and hair pulled back. I have been seeing them since 2017. At the hand surgeon's office no one knows me as my last appointment with Dr P was 2022. So no comments but I found it so interesting at the endo's office because people are more observant than I thought.

Spoiler

Leaving my AM endocrinology appointment
I have a subconjuctival heme in my left eye that is not yet absorbing and I hope it does soon otherwise something else is wrong and I am pretty saturated with all that is going haywire at the moment lol



Afternoon hand specialist appointment...I can change my look with the snap of my fingers. So quick

OK girls. Hope you all enjoy a terrific Thursday. Be well.

 

[missy]

Dr Pess’s surgical coordinator emailed me just now. She moved my surgery up to next Thursday. So nervous but thankful. Praying I don’t experience complications this time. Fingers and toes crossed

 

[missy]

Last post today I promise lol. Kitty shelters are now set up. They’re heated. Fingers crossed they like it and use it!

 

[canuk-gal]

HI:

NIRDI shout out!!!!!!!!!!!!

Work was decent yesterday. Did errands today--too chilly and windy to cycle. We have a couple of decent days predicted on the weekend, then it turns. Wet weather--possibly snow bc of the low temps--is in our future. Getting some laundry done--blankets, duvet cover and throws. So darn time consuming--but necessary. Changing over to fall/winter stuff.

@missy hope you find the right treatments for the DC. I worked in plastics and have seen many success stories with contracture release. Hope the cats like their warm digs and that you have a nice visit with your friends. My DH continues to look for suitable houses for our DS. Not a lot of inventory and $$$. Should have bought during Covid....

@Austina glad you are enjoying the weather--you are in the pool and I am getting the winter coats out soon. LOL

@marcy have you heard the S work in your forecast yet? Hope not.

Hope out silent PS'ers are AOK!

cheers--Sharon