Was it Mark Twain Who Said...

I feel the need for some sort of reality, sanity, brain on overload, stress check. Due to an issue with my PM Dr’s office I have been Neurontin free since Friday. For the first time in nearly a year and a half I can feel a bit of the brain fog start to lift. Not all of it is gone mind you, but enough to knock me off my sedated butt and notice a difference. This Neurontin free body is possibly about to revert back to its hazy comfort zone tomorrow. Before it does, I’d like to record a few things and possibly get feedback, thoughts and opinions from others. Perhaps I do not need feedback, but instead to just work through this moment…

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My brief RSD/CRPS overview…
June 2008 I stubbed my right foot/little toe causing abnormal pain. I was diagnosed in October 2008 with the beast. It is my, er, opinion that RSD now encompasses the entire right side of my body, with the exception of my face and some of my stomach. Most spreads happened after a sympathetic block or other procedure directly involving a major nerve branch. None of my doctors have confirmed a spread… probably because I am too truthful and tell them I experience more pain in new areas after each procedure. Every time there is a spread I feel as if I go through a grief process all over again, morning the normalcy of the section of my body now claimed by the kingdom of the beast, watched over by an army of sneaky ninja gnomes ready to dice apart my flesh with their fiery electric swords and leave the gashing wound to fight off frost bite.

Over the past couple of months I have watched, or felt, the radius of pain and sensitivity spread to incorporate my underarm and underside of the top half of my arm. Often I wear shirts inside out if I can tolerate them at all. A week or so ago the top of my right hand turned purple and swollen for the first time. I have felt a growing resistance to either flex or close my hand completely. The “signs” are all there, sensations, physical indications, the whole package… yet this feels slightly different from other affected areas of my body… again copying the non-pattern of each spread before it.

Tonight I ask myself a series of questions. Is what I’m feeling now, at this very moment, related to an absence of Neurontin? Am I physically feeling more, like this bizarre, irritating tickle more obnoxious and painful than sticking my finger in an electrical socket? Am I mentally processing more now that part of this fogginess is parting and unnecessarily agonizing over that which I already know to be true? Or am I finally moving to that final step I encounter with each spread, grief over losing the last outpost in my upper right limb to the enemy? If it is grief, then does it have anything at all to do with the absence of Neurontin, or is this just the illusion of coincidence… for I lost faith in that word quite some time ago?

As I continue to struggle with accepting the new Carey, the one changed for good or bad forevermore, there is one piece I do not know I’ll ever find peace with… this fog that will always sit atop my brain, clouding reasoning skills, confusing emotions, slowing thought processes, causing doubt in my own logic. For as far back as I can remember this single attribute has defined more of my being than any other. I pray for something else to fill the void, something that would not have been able to show its amazing beauty had my brain not taken a step off to the side. Although it’s often frustrating not being clued in on the greater plan, I know this life has a specific purpose yet to fill. Now to find the patience while I wait at the bus stop in a remote, unfamiliar land for the correct vehicle to arrive.

An Email to Family and Friends

To my family and friends,

As of this week I have been officially diagnosed with CRPS, Complex Regional Pain Syndrome, for full year. The pain in my right foot, which started in June 2008, has since spread to encompass the entire right side of my body. While pain, by far the most overwhelming symptom of CRPS/RSD, is usually isolated to the right half of my body, please know that this is a progressive disease of the entire central nervous system. Whether this is the first time you're hearing this, or if you've been following my progress through family members, FaceBook or my blog (in desperate need of an update), please do me a HUGE favor and watch the following two video clips. They total less than 10 minutes. This Doctor clearly defines what CRPS/RSD is and the furthest medical science has come in terms of diagnosis and understanding.

What is RSD/CRPS?
http://www.youtube.com/watch?v=tBb_XUZi2jo

Recent Advances in RSD/CRPS... an extremely validating video for me.
http://www.youtube.com/watch?v=-jLUQpaZKf8

Where am I in terms of medical treatment? For the most part at the end of the traditional, western medicine line. This week I increase the dosage of a highly controversial drug, Ketamine. Ketamine, or "Special K", was originally formulated as a horse tranquilizer. High doses of this drug essentially reboot your central nervous system. In addition to the 9 medications I currently take in an attempt to control RSD pain and other symptoms, I have tried various forms of therapy... physical, psychiatric, drug infusions, nerve blocks and a Spinal Cord Stimulator trial implant. To date none of these have helped. Wait, this is not entirely true. Without the medications I am currently taking my pain would be a 20 on a scale of 1-10 every hour of every day, absolutely. Instead my pain ranges between an obnoxious 6 and unrelenting 10+. The pain associated with RSD is the most severe type of chronic pain according to the McGill Pain Index, a medical guideline doctors use to gauge pain levels. (See "Causalgia", the Latin name for RSD.) I walk with a cane always and need a wheelchair for walks longer than 5 or 10 minutes.

I am not searching for pity, although prayers are most welcome. The most helpful items you could offer me now are compassion and understanding. Please understand that although I do not email or call, cards, letters and even packages sit in my home, postage affixed, gathering dust. Although a group email or blog might relay a sense that you are not each individually important to me, compassion of my limited strength and clarity of mind is truly needed. For me this is a daily, nay, hourly struggle. I have lost both my physical and mental independence. I am now a recipient of SSDI. Driving a car myself is becoming unsafe; Being in a car for more than an hour is unbearable. I know that several of you are not even aware that within the past couple of months I had to move closer to my mother and sister because of how much I now depend on others. Those change of address post cards sit, ready to be mailed, but are held back by my own pride... having not mailed them in a timely fashion to start with. James, who just celebrated his 17th birthday, has become my primary caretaker without complaint. He also needs your prayers, and perhaps an occasional escape from his increasingly demanding mother.

Please feel free to share any of this information with anyone you see fit. With more awareness, a better understanding and new diagnostic tools being developed every day, I may not be the only person you will know with this chronic pain disease.

My love to all of you!
Carey

Plans Fall Through? Or Right on Track...

While I’d like to fill a page with glorious, triumphant stories detailing all I’ve done to help promote RSD/CRPS awareness this month, the sad truth is I’ve done very little. Instead of finally ordering those brochures from http://www.rsds.org/ and handing them out to everyone I came in contact with, my month was filled with battling pain, fatigue, depression, doctors, insurance companies and my own tendencies to hide from it all. My goal of posting a new blog entry every few days was replaced with repeat migraines and the spread of RSD into my right side and back. On FaceBook I really wanted to find more facts to list, pictures to share and reasons to fight. At the end of Worldwide RSD/CRPS Awareness Month I can honestly say I’m truly amazed with how little I accomplished. But while feeling imperfect, disabled and vulnerable a miracle happened. Instead of educating others this month, I became the student… learning about compassion, humility and community. For within the jagged barbed wire walls tethering me to this disease a group of angels emerged feeding me encouragement and hope, sharing stories of their trials and successes, holding my hand to let me know I am truly not alone. These genuine, selfless, kindhearted souls fed me life.

I’ve always been a very independent person. When I was younger I was shy and observant, but willingly took on the role of the big sister, the little mom, to my younger siblings. Having my son James at an early age simply encouraged my role as a caretaker. Loving my son James turned me into a momma bear building an impenetrable den around the two of us. My son, family, friends and even my church could always depend on me to organize an outing, move them to another state, be the designated driver, and always be available to listen if they should call. RSD has robbed me of my persona. Not only am I no longer physically able to help with simple household tasks on a routine basis, but the tables have turned making me the one in need, learning how to ask for help and how not to be ashamed in accepting it.

Thank you my wonderful James for all you do. As a 16 year-old boy/young man/teen you should be more worried about friends and activities than chores your mother should not be attempting. The dog is well taken care of, the garbage is always out and you even clean up without prompting. Your dinners are wonderful. God blessed me with allowing me to be your Mom. Ashley, Mom & Gran – although I know it has been difficult for you to watch me in so much pain, you have each managed to find time to drive me to Dr’s appointments and run errands my body would not agree to. Thank you friends, old and new, for visiting. I am so used to running to your homes when you need me that I’ve found I lack the social skills for inviting you to my own. Please visit more! Cards, letters and emails fill my heart with joy. I may not always respond in a timely fashion, but know you have my undying gratitude for even the smallest gesture. I am truly blessed to have each and every one of you in my life. I love you all!

Things never turn out just the way you originally planned. After all, it’s not my plan that is most important. The awareness month did work, at least for me. This know-it-all newbie to RSD is more aware of herself, others suffering along side me, and the amazing strength of family and friends.