CRPS: BREATHE....just breathe.

In the  932  Days/133  Weeks and  1  Days (Not that I am counting or anything), I have seen more doctors than I can recall. I have had a few long term hospitalizations, pill after pill, procedure upon procedure, test after test and multiple on-going weeks of therapy: both occupational and physical--I am now in pain rehab therapy which basically teaches me to accept and adapt with the pain I live with: which I find completely and utterly unacceptable yet I carry on.
 You wouldn't allow a cancer patient to wallow in agony. To allow even an animal to not be treated for pain is cruel and unusual but for a CRPS patient, its completely acceptable to allow us to hurt so badly we vomit, black out, deal with anxiety and depression, cry, spasm, go days without sleep and lose our own ability to function.
I have been disregarded at the Naval Hospital Emergency Room after a civilian doctor admitted to not knowing what CRPS was and told me "You'll have a few uncomfortable days" and then went on to brag how he had "never had to depend on a narcotic" then he walked away leaving me crying and frustrated, plunging me a little further into my mad, mad, MAD world of CRPS!.
This is my current struggle;

I am a USN dependent.
My CRPS began at the hands of someone else, an organization and that "organization" is one that is within every single community. This organization that I won't name, for fear of retaliation (for they've been watching me almost daily since I was injured). I have seen people park in front of my home with cameras, they watch me on FB,  and yet take no responsibility for what happened during a workout. On 31August2011,  I slammed into a cinder block wall during a workout with resistance bands and a trainer and one of those things failed me.  I shattered my radius and ulna. I also suffered a concussion and within my wrist the shards of bone nearly severed the muscles to my thumb. You have to consider the force it takes to shatter both a radius AND an ulna. That's insane. But hey, that's completely within standards of a "normal" workout...riiiiight?
But I won't go there.....not yet anyway. I will concentrate on the "now"; the present.
My struggle today stands with getting medical care, more specifically,  the naval hospital and my doctors with their inability to have anyone treat me with kindness, compassion or understanding. For them at the Naval Hospital, my illness is a nuisance, and they can't be bothered. I was just recently dismissed from my pain doctor (lets call him Dr. Navy for the sake of this blog) at the naval hospital because he "didn't have time for me". Sigh* Yet Dr. Navy won't refer me to any other pain doctors, clinics or foundations until I jump thru the proverbial hoops and complete all the tests the doctor at The Shepherd Center requested.
WOW.
Ironically the doctor at The Shepherd Center also wants me on Butran and Nucynta but Dr. Navy won't prescribe those medications, saying "I Can't".
So here I am.....stuck. 

I have completed both the MRIs (cervical and brachial plexus). I completed the x-rays  as well as the phase 3 bone scan with radiation....and now we wait, because  Dr. Navy (the one who refuses to release me) is on leave. He left one doctor in charge so when I went to ask for a pain medication refill I believed I wouldn't have any issues. I was wrong. In February Dr. Navy took me off Dilaudid, my breakthru pain med and put me Oxycodone. I ended up have severe allergic reaction to Oxycodone so he switched it to Hydrocodone (ummmm...same drug family, similar allergic reaction) but this time I kept my mouth SHUT and continued to take it with a Benadryl. I needed some relief and  I just didn't want to argue anymore. Fact is, I didn't want anyone to look at me like a junkie.  I do know the Tylenol damages the liver (as does the Ketamine) so I really don't relish taking any medication with acetaminophen, so I requested to be put back on Dilaudid. Nope. Stand In Dr. Navy wont fill it.
So I have Spring Break coming next week with our family and no pain meds. Talk about a dilemma.

This is why most days it feels as if I am running thru oatmeal. I can't seem to get ahead. Tricare coverage lapsed for my Pain Rehab Therapy, so while I was doing well with that, I now have 11 days off from that while we wait for another authorization.
 The trouble with my CRPS limb has migrated to my upper back, they say its most likely from "over-compensation". They're hesitant to ever say the CRPS could be spreading. Mean while, I do the exercises at home. I have bought a foam roller and a two pound weight. I manage to get through my stretches, practice my rows and breathe....for now, it's all I can do.

You get tired of plastering a smile upon your face. I still put on my make-up, brush my hair and do what I need to do. I am lucky to have an understanding and compassionate husband and children, some days that's all I have. 

They say if you can count your blessing on one hand, you have enough...well, I only have one hand and I cherish those blessings.

As for our future and military cutbacks, my husband, who will have 26 years in and is facing retirement from the job he loves, we wonder how we will ever pay for the lifelong therapy, treatments, tests and medications required for me to function. It's frightening.
Gotta love cutbacks. 

For now, all I can do is just BREATHE.


BREATHE.

Pre-CRPS Me versus What I've Become

With CRPS or any other chronic pain condition we have good days and we have bad days, it all goes back to that "Spoon Theory" I mentioned in my very first blog post.
For me, the weather affects my CRPS-I AM a human barometer. I am far more accurate at predicting the weather than any weatherman on television. Temperatures below 65 degrees send me into a flare and storm fronts render me useless: a semi-catatonic, heating pad perched mess. Today is a prime example of that.

I'm frustrated.
This week I have a fairly large "to do" list before my husband returns from a three week detachment.Then, of course, we have out of town guests coming for a visit before they head off on a cruise. The "Pre-CRPS Me" would've been working frantically to ensure everything was perfect for my husbands return home: house would've been spotless,fridge cleaned and stocked with hubbies favorite foods and I would've visited the salon to make sure my 'do was done.

In respect to the guests coming, I would've turned into all out "beast mode" making sure everything was perfect--I am anal retentive in that regard. Doors would've been repainted (those finger smudges drive me crazy!), rooms would be de-cluttered, I would dust, mop, wash and wax--attention to every single detail. The "Old Me" was known to paint an entire kitchen or bathroom at the drop of a hat simply because guests were coming. These days I am lucky if I am even able to make a bed.
That depresses me. Who WOULDN'T be depressed?.

Now I need to enlist the kids help to just get the day to day chores tackled: things that before would've been a breeze for me: loading/unloading of the dishwasher, running the vacuum, laundry, scrubbing the bathroom. On a good day I can do one, perhaps two of those things--depending on the "spoons".
Now no longer do I worry about dusting the ceiling fan blades or the door jambs. I used to take the books off the shelves and dust but that doesn't happen anymore. Now I just dust around things. I cringe when people look around after they arrive in our home because I think they are taking in all of the things the Pre-CRPS Me would've completed.
 In some ways it saddens me, burdening those I love with tasks that used to be mine. But looking at that "glass half full" from another perspective, I am teaching our kids how to be responsible adults. They already have learned to cook, they can do laundry and we have one child learning to drive. When he gets his license it will be a blessing because I will be able to depend on him more to get me to and from appointments as well as run to the grocery store for me.

 Since writing this blog, my husband has returned and our guests have come and gone.---they were gracious enough to ignore the clutter. Now we have Spring Break 2014 starting this afternoon and I have my mother-in-law visiting as well as our daughter returning from college. I haven't seen B. since Christmas and need this time to recharge with her. Having any child live 1000 miles from home is difficult, but its even worse when your child's your best friend.
So now back to the drawing board....time to find a way to clean this home, and prepare for my guests.