Sunday, November 13, 2016

November 2016

Happy November from Florida! It has been in the upper 70's, lower 80's consistently here. We've been to the beach twice in the month. My crazy husband even went into the water this past week (after working out) but the gulf is pretty chilly. I wore a jacket to the beach and didn't even dip my feet in. But it is gorgeous and relaxing and we love it.

November 7 was the day that acknowledges those who struggle with CRPS. Do I want to be part of that group? Nope, nope, no. But, I did wear orange and post a few things on social media. It happened to be a "doctor day" (most Mondays are days we go to the doctor) so we took this quick photo before we left that morning.

(I cannot figure out why the rest of the blog has blue font. I've tried repeatedly to change it to black and it just goes back to blue. Sorry about this.)

I am officially back off narcotics. I'm only taking one medication (Ambien) at this point because tomorrow I'm headed to my pain doctor. He agreed to try four medications that they are having success with in Germany. These aren't normally tried here in the US for CRPS but he agreed that I've been giving this my all. I'm tired of trying. I just want something to work and to move on with life. I needed to be off narcotics for two weeks before my appointment tomorrow. So after my sister & brother-in-law went home, I went from 8 pills to 0 pills within 9 days. My withdrawal wasn't terrible and I'm so thankful for that.

I don't like the taste of alcohol and it had been two years since I had it last.
But the hubby went to get me some Mike's Hard Lemonade two weeks ago.
It made me fuzzy, nauseous and overall didn't work great.
Plus I think my body hurt more after it wore off. Darn.

 Without pain killers, things have been rough around here. Ambien dulls the pain slightly and so I've been using that when things get at the point where I cannot function. And I'm thankful to have it. We are praying that this next treatment helps. It works with the glial cells

My inversion yoga trapeze

For the first two years of having CRPS, I really relied on doctors. I still trust them but I've been trying to keep on top of things now. Since Ketamine in January, I have completely changed my eating, read everything that comes out on CRPS including two new books this last month, joined encouraging CRPS groups and watched for people that were being helped, taken more vitamins & supplements, done more physical therapy, tried more natural remedies and...the newest thing...taken out as many chemicals as I can from my routine. Which means I've been brushing my teeth with a glass pot of basically clay & spearmint. Ha. Hair care, skin care, anything that touches my body or goes into the air - I'm trying to make it more natural. I don't think using toothpaste is affecting my pain but I am giving this my all. 

My food now includes: raw sesame seeds, cashew butter (made from roasted cashews & sea salt), raw pecans, spinach, bananas, strawberries (organic), raspberries (yum!) and chicken. The chicken is all natural, yada yada yada. I'm not loving that I'm eating chicken but I get hungry and it doesn't affect my body negatively. I did try spaghetti squash last week and that was a no. I am sure it would be great with pasta sauce though. I also gave apples a go but my teeth are too sensitive to eat things that hard. If you have any suggestions about what to add, feel free to message me. I'm also mixing in a "super greens" powder into water.

Remember when we had a hot tub in our living room? Yup, we tried that too.
(We realized the chlorine in the house was a BAD idea and returned it)

My husband hammocking which was cracking me up.
He is so giant in my hammock.

 Other happenings around the house include my husband laying pavers outside. Our villa has two "secret gardens" (i.e what our realtor called our small front & side yard). We has been collecting free pavers from Craigslist for months and I kept telling him to put off the project until autumn when the weather wasn't 95 degrees. Well, it is autumn. He has been working on it for weeks now and it is looking great.

He collected different sizes, textures and colors. And...the best part was that I "sat" (reclined) and told him which pavers would go where and he dry laid them. Then he dug up the yard and really put them there. My brain loves things that are spacial and it was such a fun puzzle for me. I love him for including me. He did all the hard work and I got to do the fun part. Here are some photos from last week but he has already put vertical pavers around the palm trees and made it into a raised bed.

My favorite part of the design was the vintage bricks that came from St. Petersburg and were made in the early 1900s. A few of them have the original thumb prints from when they were made. Swoon.

We have lived in this home for 1 year as of last week. Which means we have lived in Florida for over 18 months. The weather has been incredible, my doctors are amazing and this home has been great for us. I hope the next year will include me getting out more and perhaps some friends! And of course feeling much, much better.

My friends from PA have been incredible and even dressed in orange to support me from afar on November 7 but I miss actually doing stuff with people.

Some selfies from this last month:

 Some better days, some days that I wasn't doing as well.

Thank you to my penpal Megan who sent me some fun things from PA!

A throwback photo from 4 years ago when we were managing a retirement community.

 I hope everyone remembers to seek the small joys in every day. I'll try to give an update of the new medication when I can. :) 


  1. That paving is gorgeous! Great work team! Wishing you all the best from Australia

  2. There is no blessing other than having a home of your own i really loved reading your post and felt emotionally attached with it. God bless you with all the happiness in the world.

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