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.

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.

An Attempt at Normality

Imagine a beautiful summer day attending a friend’s backyard cookout. The company is great – cross talking about old times, politics and various family hijinks. Kiddos are running around the house chasing each other, playing ball and eventually breaking out into a full fledged water gun fight, at which point some of the guys join in. And food… so much food! Smell the grill, the ribs, the burgers… all mixing with the scent of a neighbor’s fresh cut lawn. The sun gets so warm a bead of sweat forms across your brow as you search for something to fan yourself with. Before you know it half of your body feels like you just walked into a sauna.

Then you realize trying to cool off is a futile attempt. As you look around you’re the only one sweating, besides the male “adults” now chasing children with buckets of water. Perhaps it’s because at least a quarter of your body feels frozen and is wrapped up as if you’re expecting snow at any moment. Or perhaps it’s just the normal sweating you’ll never fully get used to. You push that irritation out of your mind and try to concentrate on the conversation you were just having… only now you have no idea what you were saying, even though the others are still on the same subject. With a glazed over expression you consciously try really, really hard to focus, but it doesn’t help. A beautiful breeze arrives finally cooling your forehead yet causing other areas of your skin to sting and feel raw. Readjusting your blanket or knee sock or arm-length glove to cover the raw spot irritates the rest of your skin that had just settled down. Never letting on how much pain you’re truly in, you eventually find a way back into the laughter. You have to. If you don’t you’ll scream.

In time distractions stop working. In fact, they’re making things worse. You feel the happy voices and laughter tighten the muscles in your shoulders and neck as you withdraw. Sunshine blocked by a hat and sunglasses manages to make your eyes feel tired and dry. The extra pain meds you took to get through the day aren’t helping either. Your leg/arm/back screams to be out of your nice clothes and stretched out in bed. Even though your partner is having a blast they recognize the “look” and help you say your goodbyes.

Home at last you are thankful for the sun, the fresh air, the fabulous company and abundant food. But you’ll think about that more in a few days, when the flare-up you just caused passes. Yes, you knew there would be a price to pay for traveling that half hour in the car, sitting in a lawn chair for a couple of hours, and spending your energy on being social. Fighting off disappointment and depression you adjust back to your reality – this is just how things are, forever… or until they find a cure.


What can you do to help?
Asking questions, being informed and sharing information would be a huge contribution to the RSD/CRPS community. The more educated the general public is about this disease, the more attention it will get. For websites with tons of reader-friendly info try:

RSDSA: http://www.rsds.org

American RSD Hope: http://www.rsdhope.org

International RSD Organization: http://www.rsdinfo.com

International Research Foundation for RSD/CRPS: http://www.rsdfoundation.org

Of course, if you’d like to contribute financially there are several organizations collecting funds for research grants and education. Although I am not currently physically able to participate in either of these walk/run/roll events, I am participating virtually. PLEASE check out:

http://www.triumphoverpain.org

My RSDSA fundraiser page:

http://www.firstgiving.com/careylin

One of my fellow RSD’ers on FaceBook is hand making bracelets such as these. (I should have mine soon! Can’t wait!) All monies, less her expenses for materials, are being donated directly to RSD organizations. Let me know if you’d like to purchase one of these 14 dollar beauties and I’ll make the connection for you.

However, the absolute best thing you can do to help as an individual person is to support your friends and family members who have RSD. We can’t always attend social gatherings, but a courtesy invite makes us feel wanted. We may not always answer your phone call or email right away, because we’re probably napping. We may not ask for help with everyday routines or chores, but even the smallest gesture means the world to us. Please try to understand that we are stuck inside these hurting bodies and foggy minds with no definite way out. Although pain makes us want to crawl into a hole and hide, we do not want to lose touch with those who we know and love. It is your thoughts, words and actions that help us through the week, day or even hour. Really!