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!





Sunday, March 11, 2018

Great Healing Weather

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!

10 Year CRPS Anniversary Tweaked

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
Before I knew it I was spending all my 'free time', not at work, or doctor appointments, literally in bed. I was exhausted, in pain, and frustrated. Everything they tried on me was not the magical remission answer and I did not understand we were looking for grains of hope not mountains of healing. So as a few grains appeared I was not very optimistic or hopeful. The bills were stacking higher than the clothes I could no longer wear. The list of medications and treatments I had adverse reactions to were growing by leaps and bounds as well. Yet I tried to remain positive and cheery.

So that in a very brief nutshell is what CRPS looks like to me. So why am I celebrating this horrible monster after nearly 10 years of complete life devastation?

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...








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