Tuesday, March 26, 2024

CRPS Hope for your nervous system


I'm always excited to share really great things!

My entire life I've been drawn to self-help books.
Over 20 years ago when we were blessed with a baby that had an overly stressed nervous system I focused my direction.
Sensory Integration Dysfunction was the term repeatedly consistent with her team of support, laying the path of success for her.
Then 15 years later I was diagnosed with Complex Regional Pain Syndrome on an injury that stayed in hyper stress mode or "fight or flight".
I continue to work with a team to support my nervous system and am always seeking more supports to keep me in the right direction of my life/health journey.
Heal your Nervous System is the most in depth and easy to understand resource I've found to date.
In my opinion even if you do not know your nervous system is taxed you will benefit from this book.
Please use my link to purchase, I am an affiliate and I do receive a small percentage of your purchase which is no further cost to you or you can search our favorite products CRPS and books.
Heal Your Nervous System by Dr Linnea Passaler

Thursday, January 4, 2024

Pain Flares Happen

 Make a Flare plan, your future self will thank you. 

This is one I created a few years ago, while I was still working. 

I would often force myself through the work day and then land myself in bed for the whole rest of the week. 

Creating, learning and implementing a Flare Plan was crucial to getting on the best CRPS/RSD journey for me. 

I still follow it,  but now my 'work' does not require me reporting to a job,  but whatever my tasks of the day requires of me. 

Remember showing yourself some grace goes a long way in recovery. 

Tweak your life, make it uniquely your own, especially with Complex Regional Pain Syndrome. 

Gentle hugs, wishing you low pain days and extra spoons. ๐Ÿงก๐Ÿฅ„๐Ÿฅ„๐Ÿฅ„

Saturday, January 12, 2019

Time Blocking Planner Tweaked

Make this year your best year yet!

Thinking outside the planner blocks and inside your daily real life. Let's create a better year. Let's make a journal to remind us we've had good days to look back on, during the less than days. Let's make a to-do list that can get done. Let's Tweak a Planner.

Monday, December 31, 2018

Tweaked Planner Coming Soon...

Time Block Planner Tweaked

Here's the intro video, what drove me to create a time blocking planner thinking outside the time blocks as they previously existed. This is now my 3rd year using it and it still brings me to tears when I remember where I started and how much further I can and will go.

Literally all you need to start is a current calendar or planner and some sticky notes. As time goes on you may grow your experience for your needs. But when I started I was barely functioning as much as I may have wanted some great looking big fancy calendar/planner I was functioning at a barely out of bed mode. So simple and functional was absolutely key.... 

Here's my story and I hope you will join me as I release the actual Tweak 'how to'. I am hoping it will be ready to upload by Tuesday, January the 8th. I have put much labor into this and am looking forward to sharing it with you.

Time Block Planner Tweaked; The Why

Friday, November 2, 2018

CRPS A Journey in Awareness


For fellow Warriors we know November 1st kicks of the beginning of CRPS/RSD Awareness Month with Color the World Orange quickly arriving on the 5th of Nov this year.
So to kick off the month, this learning journey seems very fitting.

Today I began working with 10% Ketamine Compound as an additional tool to increase strength in my CRPS affected arm. Studies that I have found state that when tested on participants (16 of them, lol) 30 minutes after application there appeared reduced allodynia, no swelling, and no bruising.

So this I believe could be just the tool for me to strengthen my affected arm and my upper body. I met with my new trainer at the local athletic club (no, not a physical therapist). I must tell you he appeared a little reluctant, he googled CRPS and found the information to be more confusing than helpful. But he did understand that it makes everything hurt worse. That I was thankful for, and since he at least searched it, I believed in his willingness. So together we agreed to see what we can do.

I have to tell you today was crazy. I wish I would have been filming...

So it started with some basics squats, leg warm ups etc... Then I took the lightest weight barbell, proper holding and stance, as advised, held it to my chest and up I pushed. The magic number was 7 reps, I felt that all too familiar twinge in the arm, (all you warriors know this one). I set my bar down and stepped back and said that's it. Glanced at my arm, color was still good and no swelling but I was definitely feeling it. My trainer encouraged me to sit and I began seated rowing. I have to admit I was starting to have second thoughts about this whole ordeal and I was not convinced how effective this Ketamine was working. I sat and began rowing I could literally feel the arm relaxing, I wasn't sure what to think, we continued talking and I am not at this point voicing this experience.

Set 2, I pick up the barbell 7 reps I feel the twinge, barbell goes back to holder I step back and explain I'm done and there it is the bright red arm and hand, swelling is quickly coming on. I now voice what's happening and I'm pretty sure from the look on his face he cannot believe he's seeing it. But I remember it calmed it when I rowed. So I say let's continue. I can feel it swelling, my ring is feeling tighter on my finger. I grab the handles, row one, row two, color completely normal again, swelling dropped. I AM NOT KIDDING, 10 years, I've never seen it do this, that quickly. I'm thinking is it the Ketamine?

Final set, barbell up 5 reps, I'm done, bar down arm bright red. Grab the rowing handles, row one, row two, BOOM color normal! Trainer asks if we can experiment for a minute, I say sure I'm game. He trades out the handle on the rowing machine with a straight bar. I slowly pull it back, he explains that would work similar muscle area as the barbell, first pull starts to turn red! CRAZY! Put it down immediately as to not agitate.

Continued with a few more new stretches to continue working all arm muscles, color immediately returned to normal.

Today's work-out was approximately 30 minutes. I applied a second application of  Ketamine approximately 3 hours later.

At the end of this day, I believe the work-out was the right amount with just enough push without overworking it. I was impressed at watching a flare come right back out of it immediately with calming the muscles and working them in a different way. I'm not certain if this is at all from the Ketamine, but I know I was able to move and start the workout because of the Ketamine. Day two and three will be more critical to see how this plays out.

My wrist is a little sore and I will be applying the Ketamine before bed.  However I cannot explain in any amount of words watching it calm increases my faith in the ability for continued strength a tremendous amount. It was incredible!

I look forward to continuing the month of awareness of Complex Regional Pain Syndrome and expanding my own personal body awareness as I strength train.

Feel free to comment if your CRPS has ever behaved in any similar, extraordinary ways.

Tweaking my CRPS Life!

Day 2 waking up:
Affected arm very sore and stiff in wrist. Outside of wrist burning about 3-4 inches down. Slight swelling in arm and fingers, hand sensitivity, no color change at all. Hair standing straight up. Applying Ketamine shortly.
Twitches in upper non affected arm.
Migraine, very stiff shoulders.
I belive shoulders are typical new workout sore, with a CRPS kick.
Twitching stopped about 15 minutes after being up and moving.
While burning, swelling and abnormal hair activity are present with migraine. I with no medical training, believe I am headed in the right direction. While 10 years of history have trained me sometimes things can change in an instant. This does not feel like unmanageable flare.

Ketamine applied to back of  hand, wrist and small area of arm.
Reduced hand sensitivity, burning area reduced, hair at more relaxed state.

Migraine meds have kicked on first treatment.

Evening update: I did a lot of driving today, wrist is stiff and burning to the outside edge.
I applied Ketamine at bout 8:00 pm. Loosened up stiffness in wrist still burning outside edge when turning movement. No addition pain meds needed for this day.

Day 3, Second Workout: Waking up
No swelling or color concern. Wrist is a little tight. New workout soreness is settling.
Applied Ketamine headed to workout on my own this morning.
Similar routine to first day with a little extra treadmill to warm up.
Affected wrist would not turn to grab handle for part of workout, without trainer present I opted to not look for alternative option (and honestly so new to this wasn't sure about the particular equipment set-up decided to play it safe ๐Ÿ˜Œ). I completed 10 reps, 3 sets of each. I did not record weight on day one because I know the weight likely will fluctuate, so weight may have been slightly different because I went by feel.
Beyond the workout I also cleaned the car so arm is a little agitated this evening. About half of the scar on the outside of arm is bright red, with a very sensitive knot in same area. No other discoloring. Wrist is stiff, back of hand is slightly sensitive. Swelling in arm, not in hands or fingers even after extended use today.
Applied Ketamine 7:00 pm. Sensitivity calming on back of hand. When rolling arm outward burning at wrist, knot still painful/burning.

I'll continue the Journey Here.

Tuesday, March 27, 2018

Comparing Our Lives

I think no matter what our lives involve, who we are, our skills, traits, or how our bodies are created we all have had or will struggle with this above scenario. Are we using our skills in a way that is useful for our lives and others? How do we compare this in a way that assures us we are headed in a direction good for us, living up to our potential and positively affecting those in our surrounding lives?

With the winter upon us here in Oregon I recently discovered the heated pool. The level of affect on my CRPS/RSD pain is significantly improved as it typically does for me with a non-agitating, heart elevating activity.

I started swimming/moving in the water for 15 minute increments then increased it to 30 and then added a few minutes at a time to make it an hour each session, a couple days a week. The actual affected limb has dropped to no pain most days and a controllable 2-3 on flare days.

Lots of people use this public pool for many different levels of health. Some people use it to increase movement after accidents like auto or falls. Some increase health by low impact aerobics.

For a brief moment when a gentleman asked if I was a lap swimmer or aerobics? I realized all of the above depending on the day, CRPS level, etc. It was in that moment I had to re-evaluate my 'CRPS Life'.

If I fall into that trap of comparing my life to theirs it will never be a win. If I compare my life today to my life before CRPS It will never be a win. If I compare flare days to non-flare days that will never be a win. But comparing non-flare to non-flare I can see improvement. Comparing how I'm handling a flare day, to how I've handled other flare days I can see improvement over the months/years and can realistically see when I'm spiraling in a bad direction and can increase positive supports. Be careful of the comparing pitfall!

CRPS Hope for your nervous system

  I'm always excited to share really great things! My entire life I've been drawn to self-help books. Over 20 years ago when we were...