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.

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!

Intro to Me

In honor of RSD/CRPS Awareness Month I’ve jumped on the blogging bandwagon to chronicle another story of one afflicted with this ridiculous disorder. Feel free to ask questions at any time during the lecture. And please, try not to drool on the desk or snore in your neighbor's ear.


There was no significant moment causing the RSD/CRPS on the outside of my right foot to appear. I imagine I stubbed my toe or smacked my foot against something generic, a near daily occurrence, and then considered the resulting pain to be penance for my uncoordinated stupidity. Sometime during June of last year (2008) the pain in my foot became REALLY annoying. Besides swelling that looked like a bone was poking out and the immense pain when taking a step, the red/blue/purple colors were awful. Being the thickhead that I am, I waited nearly a month before seeing a doctor to address my broken/fractured foot. Little did I know that nothing was wrong with it.

Trips to my primary and orthopedic Drs, mixed with x-rays and MRIs, drugs and physical therapy, eventually left me with an initial diagnosis of bursitis between the bones of my foot. No one could really explain why I had this random, protective swelling, for a runner I am not. They seemed content to keep prescribing anti-inflammatories until it just went away. But I continued to push for answers and treatments. If the doctors didn’t have an answer I sure as heck was going to find one. In late October (2008) I was referred to a Pain Management Specialist. She reviewed my growing chart and examined both of my legs while mumbling few words to the accompanying nurse. When she was satisfied with her findings she sat/slumped on her stool. With a heavy sigh she looked up at me and said, “You have RSD.”

*** Please note that being diagnosed 4 months after the onset (or 3 after my first trip to the doctor) of this rare neurological pain disorder is really a blessing. RSD is believed to be a misfiring of the nervous system after some form of traumatic event, such as surgery or a fracture. As such, most people with RSD are misdiagnosed for months, or even years, after it begins.

Although now armed with a real diagnosis new meds did very little for my swollen, aching, burning, frozen foot AND ankle. My skin became too sensitive to wear a sock and I had only one sandal that almost fit. The first goal I set for myself, to wear a real shoe before it snowed, quickly came and went. In December 2008 I had my first surgical-type intervention. A Bier Block was performed, a localized drug cocktail infusion held in the lower limb via a strong pressure cuff for just over 30 min, and provided very little relief. After that there were 3 sympathetic nerve blocks performed by 2 different doctors which made very little difference. The most effective treatment, other than lots of pain meds and walking with a cane, has been a Ketamine infused compound (lotion) allowing me to finally wear socks and tolerate blankets in a futile attempt to warm my foot/leg. Hooray for small victories!

With each new aching, burning, sharp, sensitive movement of pain into a new area of my leg I’ve routinely denied that it’s RSD finding a new way to torture me. Just blame the overwhelming, pre-cramp sensation in my calf on being extra tired. Perhaps the sharp, caustic line up the side of my thigh was only because I did too much the day before. Like many misinformed Dr’s I needed my own physical proof, for sanity purposes, that it was Really Sucks Dystrophy spreading and not my own imagination. My often discolored and swollen knee and sensitive bum (feels as though I have a really bad sunburn… minus any heat… then scraped bare-bottomed across asphalt… inside the flesh) makes it hard for even someone as thickheaded as me to ignore reality. It’s simply part of the disease. In a mere 9 months the RSD has managed to encompass the entire front and outside planes of my right leg, from my toes to my hip, and the back of my thigh/bum. Within the past week I’ve also come to accept RSD has infiltrated my lower back.

On Monday, May 4th, my grandmother will drive to my home and bring me to have another procedure done. The doctors are hoping for a 50% improvement with a device called a Spinal Cord Stimulator (SCS). Think of it as a pacemaker for the nervous system. Monday’s trial implant will officially start my transformation into a cyborg with electrodes channeled into my spinal column connected to an external battery pack. I will also come home with my very own remote control. Whether or not I decide to proceed with a permanent SCS implant (battery will go in either my bum or tummy) will depend primarily on the outcome of this trial. Of course there’s more to the story than that, but I’ll save it for another lecture.

Although there is no cure for RSD/CRPS, new treatments are being developed to help us to LIVE with this awful disorder. The strength within the RSD support community is just as overwhelming as the disorder itself. Every day is a new battle and a new victory. I absolutely thank God for the unwavering love and support of my family and friends. Without them there's no doubt I would be a puddle of hurting goo hiding in a corner somewhere. I do continue to hurt and occasionally feel like goo, but hide a lot less.

For more information about RSD/CRPS, feel free to visit:
http://www.rsds.org
http://www.rsdhope.org
http://www.rsdfoundation.org