Hello Strangers

Yes, it has been quite a while since I last posted on this blog... over a year now. I think I will be making an effort to write here more often in the near future. Writing is simply good for the soul, whether or not anyone reads what you have written.

An RSD/CRPS friend Hayley (rellacafa.com), who's writing style far outshines anything I can even compose in my head, recently posted a link to another great blog. Living with Fibromyalgia was written by an individual with, you guessed right, fibromyalgia. Although the blog is no longer active, it is a great resource of information. In particular, 50 Ways to Help a Chronically Ill Friend is a fabulous posting applicable to ANYONE with a chronic illness.

I reposted this link as found on FaceBook and asked that others read 50 Ways to Help a Chronically Ill Friend as a personal favor to me. It'll be interesting to see how many of my friends, family members, and acquaintences without RSD actually read this article. Again, regardless of whether or not someone pays attention at this moment, it is good for my soul to repost it. Perhaps someone else with a chronic illness might be able to use it as a tool to communicate with those in their lives... such an important thing to do.

Oh, and you may be asking yourself, "What the heck is that picture?" Believe it or not it's an English Angora rabbit. It's May 1st... did you start your day with "Rabbit, Rabbit, Rabbit?" Hey, it amused me and the post needed a picture. What should I have used? ;-)

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.

Waiting for a Muse

As I sit day after day, awaiting inspiration’s arrival, I have begun to believe it will not arrive… at least not in the form I imagine. My desired muse is to be ushered in on the breath of peace, a wave of love, the flow of freedom. Where is my carefree, pain free day during which I can compose an inspirational message about survival and perseverance? If I was given this affliction for a reason, would it not be to help others through it also? To complete that journey, do I not need to come out on the other side… to witness that this is all for a purpose, a plan? Perhaps it is my own insularity that keeps me blinded from the truth.

More likely it is that on those blessed days I do not feel like sitting at my computer, using what little energy and liberty of spirit I possess, typing an entry for a blog. My good days are not chronicled because I am living them. Who wants to know that I have run a load of laundry on my own, or have gone to the grocery store to choose my own produce? These tasks which were once viewed as menial and every-day are now the very activities I strive to incorporate into my daily existence. It is a good day when I can pretend to be normal, and menial.

Today is a particularly rough day. This week I left my home, in cold weather, three days in a row. The third and longest day was spent in the company of beloved family, mostly in the car, but also included more city walking than my body can now tolerate (maybe 2 city blocks). On each of these days it was important for me to be out of my home, and each time I returned to my bed I knew I would feel the day’s activities in every nerve of my body for days to come… each day compounding the next exponentially. Yesterday I was motionless, leaving my bed perhaps 3 or 4 times all day. It is now 5pm on a Sunday and I have only managed to get myself up once earlier this afternoon.

This punishment I now endure is chosen, for I know the wrath of the beast living inside of me. We are well acquainted after just over a year and a half. Today it consumes my whole body, not just my right foot where it began. Yet I am at peace, as I sit in my gradually darkening bedroom, knowing this time it was my choices that put me in bed for days. I was able to choose the activities important to me. I savor those moments of imagined freedom as I physically escaped my bedroom three glorious days in a row. God blessed me with the time and energy to get to and through my appointed tasks. I was able to engage in conversation, for the most part, and participate in important events. Yes, it was important and worth the pain to make sure my son and I have good, strong, clean teeth. Yes, it was important for me to check in at a doctor’s office. Yes, it was important to spend time with my family traveling to a destination important to them.

Today’s muse arrived in silence, in pain, longing to be released from agony… with the smallest, most beautiful tear resting on its cheek. With this pain comes satisfaction. With this jabbing, searing, aching, poking, slicing, pulling, electric, frozen torture comes the realization that I beat the monster. I was able to be productive, even for a brief moment, while it had its back turned. When the monster roars, I am silent… praying for sleep and more effective pain management tools, and hopefully distracted by the computer. But when it is finally too tired from its rampage through my body, I am in charge… I call the shots… I get to be in control of my own life again… or at least I’m able to pretend.




"As threshing separates the wheat from the chaff, so does affliction purify virtue."
~ Sir Richard Burton

"Everything can be taken from a man but the last of human freedoms, the right to choose one’s attitude in any given set of circumstances - the right to choose one’s own way."
~ Viktor Frankl

"The great art of life is the sensation, to feel that we exist, even in pain."
~ Lord Byron

"In the darkest hour the soul is replenished and given strength to continue and endure."
~ Heart Warrior Chosa

"After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs." ~ Emily Dickinson

"Life is pain and the enjoyment of love is an anesthetic." ~ Cesare Pavese

"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." ~ Julius Caesar

"There is no coming to consciousness without pain." ~ Carl Jung

"Pain adds rest unto pleasure, and teaches the luxury of health." ~ Martin Tupper

"Do not undervalue the headache. While it is at its sharpest it seems a bad investment; but when relief begins, the unexpired remainder is worth $4 a minute." ~ Mark Twain

"The space between the tears we cry is the laughter that keeps us coming back for more." ~ Dave Matthews Band

"We cannot learn without pain." ~ Aristotle

"One word frees us of all the weight and pain in life: that word is love." ~ Sophocles

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.

To Shave, or Not to Shave…

Showers can be glorious. Step into the warm embrace of heated, running water and wash the weight of the world away. Cleanliness most certainly must be next to Godliness, for with tensions eased and our bodies feeling refreshed our minds are open to endless possibilities… or maybe that’s just our sinuses clearing. Regardless, during last night’s shower, just for a moment, I slipped into my old self pondering the ways of the universe and searching for that daily epiphany making sense of even the smallest worry pressing on my shoulders. Then the time came to decide, do I shave my legs or not?

The magical box of steam and water no longer holds the same allure it once did, at least not for me. Now every time I shower there are conscious decisions to be made. I can’t forget to first fill the tub with really warm water to protect my right foot from the needles shooting out of the showerhead. I must make sure my lovely medical grade shower seat is in position and ready for me to spend most of my shower upon it. Beyond the 5am work day “did I already use shampoo” fog of my former life, my cleansers are now lined up in order trying to prevent a step from being repeated or missed while I perceive myself to be wide awake. By this point I’m probably out of breath, my leg is screaming to be released from this hell, and I’ve started to sweat. Yes, even in the shower I can break out into a fatigue/stress/pain induced sweat. Then there’s always that one thought I put off until the end, whether or not to shave my legs. If I do, my right leg feels as if every stroke of the razor is either chopping off the top of goose-bumps or removing sections of skin all together; If I do not, the slightest brush of pants, sheets, blankets, etc make each individual hair feel as though it’s been caught and will be ripped right from the root. Last night, because it had been nearly 100 hours since my last shower, I went for it. The need to feel clean overpowered any anxiety about additional, aggravating, short term (12 hr) discomfort.

Luckily I am a fairly odor free person. So, aside from my very slick, oily hair the average stranger might not have guessed that I had not taken a shower or full bath since Monday morning. But those were Dr’s orders. One can simply not get electrical leads poking out of their spinal column wet. The internal surges from programs not working properly were already more than I could tolerate. Just say no to electrocution! The Dr also asked that I wait an additional 24 hours after the lead came out before showering, giving my lower back just a little bit more time to close and heal. Admittedly I might have taken 26 or even 28 hours before getting in the shower, but at that moment a nap was more important. I was still beaten up from the procedure, both physically and emotionally.

During my shower reflection moments I was trying to release the disappointment and grief felt on Thursday after being told a permanent Spinal Cord Stimulator was not going to be an option for me. I knew this in my heart going into the appointment, but my brain kept scrambling, searching for more than existed, more pain relief, more details to give to the doctor convincing myself that it really was going to help me. Before I opened my mouth I could see the Dr’s interpretation of my body language on his face. Doing that much searching and concentrating for the SCS’s success meant it wasn’t one. Truth be told, my body actually feels better now that the lead is out… but my heart is still on the mend.

Finding that balance between being cautiously optimistic without giving up on hope is a fine line to tread. Even though I knew the statistics going into it, I still felt like the rug was pulled out from under me. I knew that I wasn’t a failure, it just didn’t work, but I still felt that way. Knowing I’m that much closer to running out of options to treat RSD scares me. One more decision I can not control, one more possibility of a normal life swept away. I received wonderful words of understanding and encouragement from fellow RSD’ers whom I am blessed to now call friends. They are right; I needed to allow myself time to grieve for the loss of this potential treatment AND I need to find a way to shake it off, moving onto the next item on the list. There are new treatments being developed every day around the world. With continued prayers, awareness and funding for research we can be optimistic for a day when shaving our legs won’t cause so much agony, even dare to hope for a cure… cautiously of course.

Does “I Don’t Know” Mean “No”?

If I were the 16 year old living in my home the phrases “I don’t know”, “I don’t care”, and “Whatever” could be translated into a nearly definitive “Yes.” Fortunately I no longer need to endure natural hormone fluctuations causing my mind to automatically gravitate toward the negative. Instead my body’s chemistry is influenced by the myriad of drugs pumped into it 3 times a day. My body now also grapples with the sensation and idea of foreign electrical impulses disrupting various areas, often without warning. The question plaguing me is whether or not these electrical charges actually help the growing pain in my right leg caused by RSD/CRPS. I simply do not know.

Monday morning I woke to find myself very anxious and nervous, not about the pending procedure but about the various decisions I would have to make from this week forward. What if it did work? What if it didn’t work? What if I was unsure if it worked? Did I want to pursue any other options before taking a forever plunge into the world of implantations? These and more thoughts continually swirled and leapt and dove around in my head most likely contributing to the migraine I’d had for hours, if not causing it entirely. While waiting in the pre-op area for the Spinal Cord Stimulator trial I tried to convince myself those were all worries for another day, another week. My concentration should have been solely on the growing right leg pain, the migraine pounding the left side of my head, and getting through the epidural procedure implanting electrical leads into my spinal column. Unfortunately, I’ve always been stubborn and that moment was no time to change me.

Although the doctors needed more than one attempt, i.e. hole in my back, to correctly place the electrical lead, the mini-surgery went well. The forewarned anesthesiologist did end up giving me more medicine than he had originally anticipated. During the procedure we actually joked about it being time for a second martini. He was again surprised that with the amount of meds running through my veins the migraine never fully went away. My SCS, an ANS/St Jude model, was up and running while lying in the recovery room bed. The rep gave me 5 different stimulation programs to try out over the next several days, each one a variation of the next, sending static to drown out the screaming nerves of my right leg.

Unfortunately the now screaming, aching, sharp muscle spasms in my back could have cared less that their sacrifice was for the good of the whole body. I had to wait for their voices to settle before trying out the SCS during the car ride home. To my dismay each program now either stimulated the wrong leg or sent additional sharp, pinching sensations up my spine. So, I waited until I got settled at home before firing up the box again. Program after program, standing, sitting, lying down made no difference. Something had happened between getting off of the stretcher and into the car. My electrical lead had slipped. With phone calls to both the Dr’s office and SCS rep it was decided that I’d meet with my rep to set new programs once again stimulating the correct leg. Tuesday morning we met and learned that only the 1st out of 8 electrodes on the lead sent any sensation to my right leg… while stimulating the left at the same time. With 4 new, bizarre programs I went home, rested, and started over.

Within the past 36 hours I’ve been diligently trying to ignore my back’s temper tantrums, the weak, aching sensations in my left leg and any other random stimuli all to concentrate on whether or not my RSD leg feels better. “Better” according to my doctors is a reduction of pain by at least 50%. I can not express how tired I am of having to quantify pain levels on scales of 1 - 10 or by percentages. I know when it is bothersome yet somewhat blockable, consuming and ridiculous, making me cry, or wishing for a swift end in whatever form that might come. Now, with the addition of severe back pain and bizarre electrical sensations, I can still feel pain in my leg and foot, but cannot discern if it’s better or not. Additionally, because of the extra stimuli I have not been very mobile, mostly carefully shifting positions in bed and lasting no more than a half hour sitting in a chair. With so much bed rest, the RSD monster normally calms down.

My conclusion thus far:
There is a possibility that it is helping. The extra pain in my back should be causing a flare, but only did so the first night without SCS stimulation. My hip and thigh seem to be hurting less, but is that because I’ve spent so much time in bed? Then there’s a chance that the extra pain meds I had to take for back pain could also be reducing my RSD pain. All of this boils down to a big, fat I don’t know.

The lead will be removed at noon today. I’m seeing a new doctor at the Pain Center in Peabody to discuss options going forward. I can say that I’m not ready to jump directly into a permanent implant at this time. Perhaps a second trial makes sense. Maybe I pursue the few remaining options for treatment before revisiting this one. All I can do is pray that the correct path is illuminated for me, and that I take off my sunglasses long enough to see it.


Pseudo Side Bar:
Please understand, any type of needle, procedure, surgery or invasive test carries an additional risk for RSD/CRPS patients. Every time a nerve is disrupted there is a chance that the RSD monster will decide to make a summer home of the surrounding area. This is why doctors try to adhere to a somewhat proven protocol in treating RSD patients starting with medications and physical therapy. Both are non-invasive and have helped some if the RSD was caught early enough. If rounds of medications and PT are not successful, various types of localized injections and/or nerve blocks are performed. From that point there are numerous surgical procedures on the to-do list including SCS’s, nerve ablations, and RadioFrequency treatments, all of which seek to disrupt the signal of the malfunctioning nerve(s). New to the treatment scene is the drug Ketamine which is available in very few locations and still in it’s infancy in terms of how to administer it to RSD patients. (Scary and exciting at the same time. More on that drug in another blog.) My RSD monster has already developed a nice estate for itself in my right leg; I so want to avoid giving it a chance to buy up any additional property.