Saturday, January 12, 2019
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
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.
Friday, November 2, 2018
A NEW JOURNEY
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 😌). 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
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!
Sunday, March 11, 2018
The Sun is Shining
A common trait for most CRPS Warriors is praying/hoping/surviving the winter straight forward. The cold attacks our bodies in ways that are indescribable unless you've weathered one yourself. So the moment the sun peeks in the Spring even if all we have the energy to do is literally sit or stand outside in it we do.
Well... the sun is shining today and all I can do is watch it from my climate controlled home, lol.
So I'm trying to focus on other things get a few orders accomplished. Why you ask?
I'm broke out in a heat rash from ears to knees today. I'm working in my very comfy loose fitting night shirt. The itching in crazy around the face right now, but like a pretty good size of my fellow Warriors I cannot put anything on it, or take anything for it. Water. Lots. Flush it through the system as fast as possible.
Today is at a level if I had to work outside the home I would have to call in sick, but today at my own pace I can get things done.
Just to settle your curiosity for those not in the know (why the heat rash)... It would be common in most people to have these from an allergic reaction to something... food, chemical, etc...
I personally (and many CRPSers) break out any time I've had a fever. Sometimes they are stress induced, sometimes it actually is heat from a pool, hot tub, sauna, sunshine. Sometimes vitamins will do it, and nearly 15 out of 20 times any over the counter, alternative, or prescribed medicine.
The fun of this particular excursion. As some of you already know that have been following me on Instagram. I just started swimming in warm chlorine pool water, to help eliminate pain and increase blood flow. However I ended up with a soar throat and little cough that maybe nothing more than seasonal adjustment allergies, but I have been exposed to lots of sick people so I though I'd bump up my vitamin C just to make sure. However in the middle of the night when I was coughing so bad I couldn't sleep I reached for the cough syrup. Woke up broke out....uugh.... yep that's how we do things here... ALL or nothing :)
Pretty sure this is suspect of an allergic reaction to DM dextromethorphan in the cough syrup because of previous experiences.
Good news of the day, rash looks like its at a peak point and we are on the down hill roll. :) Bad news one more thing added to the many I cannot take list.
Good news, my health actually continues to get better even though the pain side is worse so I don't very often need cough syrup. Bad news won't know for sure this is the only problem until it clears and I try the pool again.
But here I am Tweaking Life! Making it work, making it my own! Learning and feeling blessed to be upright on this gorgeous day and not balled in a heap in bed!
Complex Region Pain Syndrome CRPS
A time to celebrate
Welcome! I've officially been blogging since 2012. I'm not always good at consistency and today I'm celebrating some of that reason. Yes, you read it correctly. I am celebrating CRPS.
For those of you who do not know about CRPS let's get you up to speed. It is is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.
What does that really mean in everyday terms? Let's start with... the nervous system went into shock and never really recovered from it.
My story starts in June of 2008 I wrecked my car, my arm went through the steering wheel as the airbag deployed. I broke the radius and ulna bones in my left arm. As the days turned into weeks and the weeks to months my arm continued to swell, always hurt and no amount of therapy, drugs, nerve blocks, mirror therapy, could get the swelling to stay down and in turn very little healing was happening to surrounding tissue.
I could see in x-rays the plates and screws in my arm allowed the bones to heal. But let me tell you the pain I was experiencing was not showing that at all. There was constant sensitivity to the back of the hand even showering would create extreme needle piercing pain from the back of my hand all the way to my shoulder. Redness and swelling never ending, we purchased a new wedding ring for me 2 sizes larger to accommodate continual swelling and still at times I have to remove it.
I do not remember the exact time of diagnosis but it was very early on, within the first few months (this is unusual for this disease, I was lucky). Physical Therapists and my Doctor/Surgeon were working pretty hastily/steadily to try to put this mess in remission. (Once you contract you are considered lucky to get it into remission, as of today there is still no known cure.) While I was living this, and knew the diagnosis it was not within my current scope to grasp what was happening to me.
Physical Therapy sessions would leave me so exhausted I would literally pass out and sleep the rest of the day. I was doing less and less and yet exhausted more and more.
It seemed as though life was closing in so quickly. There were easy daily tasks I could no longer do, clothes and shoes I could no longer wear because the pain was so overwhelming. Yes, shoes, and yes let's recap it was my arm. I have always been susceptible to migraines and this new thorn in my world rubbed those in a whole new incorrect way.
|CRPS also known as Causalgia|
CRPS is not the only chronic disease that people suffer endless pain while it's pain levels maybe higher than most, it's frequency is common to many others.
So yes, I celebrate that my eyes were opened to many other suffers on this planet we share. I celebrate the small grains of hope I originally did not know I should. I celebrate in the midst of this 'hell on earth' I can find joy in the journey. I celebrate each day as I realize your life truly can turn on a dime or in a moment and for me and many other Warriors of the disease we are faced with this reality daily.
So what really is this part of the "Tweaking Corner" Blogs all about? It's about emerging new life from the old. It's about breathing hope where little may exist, it's about sharing a journey that many may walk and only few may call CRPS. It's remembering everyday may not be good, but everyday has something good in it.
As always it's tweaking everyday life (with CRPS, Fibromyalgia, or other chronic pain) and making it uniquely your own. Kind of a tool for literally surviving everyday. Through time I can imagine my story will continue to unfold. I hope it helps the reader either better understand themselves or someone they are care giving. I pray readers can comprehend the paradigm shift between happy and healthy, bad day and good life. While I cannot always predict what my body will do, I can always guide my mind to better reactions. I cannot make my body have a good day, I can choose from my palette of options how to make this the best day possible. On someone else's scale it may have the resemblance of complete fail or bad day, but in my life living in my body it's success. I want you to find that too.
A million thanks for reading as the Tweaking Corner adds another new direction...
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...
A NEW JOURNEY For fellow Warriors we know November 1st kicks of the beginning of CRPS/RSD Awareness Month with Color the World Orange ...