Z = ZZZZZZZ (sleeping)

Sleep that knits up the ravell'd sleave of care,
The death of each day's life, sore labor's bath,
Balm of hurt minds, great nature's second course,
Chief nourisher in life's feast—
                    -Macbeth, Act II, Scene II

I have always loved to sleep. Sleep is so beneficial to the body and mind. Americans are generally sleep-deprived, but not me. I almost always get 9 hours of sleep each night; I'm grumpy if I get less, and I'll take more if I can get it. My friends tease me about sleeping so much, but I think it's just because they don't get enough sleep and are jealous that I do!

I will confess, though, that sleep is also my favorite escape. It's far better than alcohol or drugs: when I wake up, I don't have a hangover, and I know where I've been all night! I remember during the second half of my sophomore year, I was having a particularly hard time, and I slept almost constantly. My roommate even wrote me a note of concern. I was sleeping through classes, through job commitments, through social activities. In hindsight, I was depressed and trying to escape a difficult time.

Moreover, sleep is complete escape. I have used some of that escapism during the last four years of chronic pain. If I can sleep, even just an hour's nap, I can be free from pain for a little while. I don't have to go anywhere, or impress anyone, or work on any issues. I can dream (even if it's not good, it's at least different). I can fly (sometimes). I can wake up and start again.

Ahh.... sleepytime... 'night everyone...

Y = Yet

Yet. This word became my turning point. Yet. This word began to change my attitude. Yet. This word was my mantra of hope. Yet. This word helped me see an end to my current situation. Yet. With this word, I began coming back into life. Yet.

In August 2010, when I first met my physical therapist, Lorraine, she saw through my fake smile and knew that I was really in trouble. Pain had run my life for 3 years at that point (now almost 4), and it was in far more control that I like to admit. Over the course of dozens of doctors and treatment, with no relief in sight, I was giving up. I was trying a new thing, one more time, one more attempt at doing something about this pain. I didn't really think that anything would work, but I didn't want to stop trying.

Early on, I discovered that Lorraine is much more than a physical therapist. She is also psycologist, teacher, counselor, spiritual encourager, and cheerleader. She talks a million words per minute, and most of them are funny and uplifting. She began to teach me new phrases to say and think. The most important one was yet. I would say, "I can't walk around the neighborhood anymore." She would correct, "You can't walk around the neighborhood yet." I would say "I can't work." She would say, "You can't work yet." I would say, "I can't exercise." She would correct, "You can't exercise yet."  Pretty soon, my own talk was littered with yet and it's corollaries right now and not forever and maybe tomorrow. For instance, "I'm really hurting right now. But not forever." Or, "I'm depressed right now. But maybe tomorrow I'll be better." Or, "I wish I could go to lunch. But I can't yet, maybe tomorrow." You see how the new combinations change the tone of my thinking.

Where can you plug in the magic word yet? I can't stand on my right leg yet. I can't leave the house yet. I can't be as social as I want to be yet. I can't exercise much yet. I can't lose weight yet. Remember that your situation is only for right now, and not forever. I hope that maybe tomorrow will be better for us all...

X = X-Rated

Skip this blog if you are offended or grossed out by discussions of sex or bodily functions. These topics, unfortunately, have been integral to my experience with pain. They are not often discussed as "side effects" of chronic pain, but they certainly are! 

Sex. (I find that I'm reluctant to write about this. My apologies in advance to my husband, my mother, my brother, and anyone else who may be uncomfortable with my publicizing this part of my life. I'll try to keep it within social norms.)  Regardless of what the S&M crowd says, sex and pain do not make a good mix. Chronic pain, with its attendant depression and fatigue, tends to dimish libido; I'm seldom "in the mood." Although my mind may be very interested in having sex with my husband (and the mind is the most powerful sex organ, right?), my body is hesitant. After all, an orgasm is simply a variant on a muscle spasm... ever thought of that? Well, my lower back spasms enough, and it's not a pleasant experience. I do crave the endorphins that are released afterwards, but I will confess to some fear in creating a spasm on purpose!  Fortunately, there are many variations to the "physical expression of love," and some of them don't hurt me at all! My husband has been very understanding (and creative) to help me through this time without losing my sexuality completely. Once I began to feel better, starting in January, my sex drive has increased along with my wellbeing. Whew!

Showering. I had no idea that simply showering could be so exhausting. Once the pain really took hold of me (after about the first year), I could only shower once or twice per week. I would schedule it as my only activity for the day, and I would plan a rest period afterwards. I began showering in our tub, so that I could sit down while running the shower over my head. Washing my hair was especially tiring. There's something about holding my hands above my head that is just difficult to manage with lower back pain. Fortunately, I wasn't engaging in enough activity to cause a sweat or any body odor (at least, I hope not). I don't think that anyone even noticed whether I showered or not; I tried to schedule a shower before I had any "social" functions. Since I've felt better, I still haven't returned to the "shower every morning" schedule I used to have. I shower at the Y after swimming (using soap and washcloth to get an actual shower 3 times per week), and I shower at home and wash my hair twice per week. That seems to be enough. Friends, any objections? (There could be further commentary on the American extreme of showering and washing hair daily. There have been speculations that our kids are having more allergic reactions because we are all so clean all the time. No need to ramble further... you know the arguments...)

Constipation. This is a well-known (but not often discussed) side effect of painkillers. When I first mentioned this problem to my pain management doctor, she gave me a copied sheet of suggestions, with a picture of an unhappy man sitting on a toilet (something like the picture here). It was obviously something that many of her patients dealt with, but this is not an encouraging piece of artwork! I have actually had days that I was so "stopped up" that I couldn't eat anything (nothing could go in until something came out). Besides painkillers, I also take muscle relaxants (to further help with the pain.) Unfortunately, muscle relaxants also relax the intesinal system, and everything in there just stops. Fortunately, my wonderful family physician (with my Gastroenterologist's confirmation) prescribed Miralax for me (now available OTC). It is so mild that it's used on infants and in nursing homes, and I can use it every day without side effects. For the last year or so, I've had to use it every day just to "keep things running." I am really looking forward to getting off the painkillers, not only to stop taking painkillers, but so that my intestines can get back to normal.

Wrinkles. This may sound strange, but I've been curious for a long time to know what my face will look like when I get old. In college, I took a wonderful "fluff" course from Dr. William Purkey who has the most wonderful wrinkles! He discussed them as the "story of my life written on my face." I always thought that was a cool way to think of wrinkles. Also, as my mother has aged, her sweet face is crisscrossed with "smiley" lines. Every one of her lines wrinkle up when she laughs - and it's beautiful! I've noticed, however, that my first wrinkles are frown lines. I've looked in the mirror and watched my face: when I'm hurting, my eyebrows draw down and my mouth shrinks up. I'm now getting lines on my face that look like pain. I don't like this. I hope that I can spend enough extra time laughing to change my wrinkles to "smiley" lines like my Mom's!

I hope I have not offended you. Thank you for continuing to follow my blog!

W = Work

Work (and productivity and contributing to society) is a part of life. I was built for work. I like to work. Granted, I'm not a saint who would rather work than sit on the beach, but being forced to not work has shown me the value of being able to work.

I have been fortunate in my careers. I have found passion in teaching (see Monday's post), but I have had opportunities in other areas. Since I got married (20 years next month), I have had the option to work full-time or part-time, or (occasionally) to not work at all. I have made good friends at work, and learned from some great bosses.

During the last four years of pain, I have felt keenly the "down" time required by my body. Sometimes, it is nice to just be able to "laze around the house." I highly recommend it from time to time. But, after a while, it gets old...

I think one of the best indications that I was beginning to feel better was my pursuit of a part-time tutoring job last fall. The ability to go to school and work with kids (kindergartners learning how to read; so cute) and be productive and help them... this was one of the best therapies for my self. I didn't even tell any of them that I was struggling with pain; it didn't matter to them, and I was able to do what they needed. It was the beginning of "coming back into life" for me.

Do you like what you do for a living? If not, what would you rather do? Why aren't you doing it?

If we have to spend one-third of our waking hours earning money, it's better to do something you like. Of course, in this economy, it's also better to do something that pays the bills...

V = Village (as in, "It Takes One")

"It Takes a Village" to help someone in chronic pain. Over the (almost) four years that I've been in pain, I have seen dozens of doctors, therapists, and specialists. The ones who have helped me have continued to be part of my "village." The ones who have not helped me... I don't see them again.

During the first year (starting in summer 2007), my chiropractor (Dr. Dean Meylor) was my best advocate, and he continues to help me (about once per month) stay "adjusted." I went to Dr. Henry Elsner at Vanguard, who I respect very much; he told me that I wasn't a surgical candidate, so I couldn't use his services. His physiatrist, Dr. Shawn Dalton-Bethea, tried for one year to inject a spot that would provide relief. She did not succeed.

After the first year (in the summer of 2008), I asked my wonderful Family Physician (Dr. Lisa Miller) for a recommendation on where to go next. She directed me to the High Point Pain Clinic. There, I came under the care of Dr. Maria Bodea, who continues to be my pain management provider. At the clinic, I saw Dr. John Goeke for biofeedback and relaxation techniques (which were not especially helpful, but Dr. Goeke's listening and encouragement helped a great deal). I also took 8 sessions of physical therapy there, with little success (although they were the ones to recommend a TENS unit). Dr. Miller also recommended me to a psychiatric mental health nurse, Meredith Baker, who prescribed anti-depressants (I was certainly depressed). Meredith recommended some talk therapy, so for about a year, I worked with Bonnie Kennedy. She helped me with most of the depression and adjustment issues I had during that year. (A side note: I continue to see Meredith every three months. Last week, she tole me that I look happier than she's ever seen me! And, with the pain reduced, and health on the way, I am!)

After the second year (summer 2009), I went to Duke. They had done my original spinal fusion in 1984, so I thought someone might like to study my back 25 years later! I saw Dr. Chris Brown, who referred me to the pain clinic and Dr. Lesco Rogers. Dr. Chris Lascola gave me the first injection that provided some pain relief; he used a CAT scanner to guide his needle (rather than the traditional x-ray). This was my first indication that I could be helped, but nothing further came from his work. Dr. Rogers made appointments for me with the water/pool therapists at Lennox Baker Childrens Hospital (just down the road from him, in Durham). The therapists there were outstanding! I wish that they were more local, so that they could continue to be a part of my "village." Nonetheless, I am grateful to the women who worked with me, helping me be more comfortable with water exercise. Dr. Rogers performed a nerve ablation in an attempt to lessen my pain; the procedure (one of the most excruciating events of my life) actually made my pain worse. It took a subsequent epidural injection to relieve the extra pain. When I left Dr. Rogers after a year, I felt about the same amount of pain as when I met him. He believed that he had done a good job, because I wasn't any worse. Hmm...

During the next summer (2010), I was referred to Dr. R. W. "Chip" Watkins at Wanek Functional Medicine. His work with me was the beginning of my return to health (which is still in process). His supplements helped reduce my inflammation and returned the rest of my body chemistry to proper alignment. He recommended physical therapist Lorraine Kingham, who is the "Queen" of my "Village." Her hands-on (celtic elbows) technique of muscle and soft-tissue realignment has been nearly miraculous in my pain relief. I have seen her once per week since August 2010, and I continue to get better and better. In December, Lorraine discovered the inflamed bursas at the sacro-iliac joint, and in January Dr. Bodea injected them. This was the beginning of my return to health.

Once my pain began to subside, Lorraine recommended that I begin strength training. With the poor results from my previous efforts (YMCA and Curves), I was reluctant. But Lorraine works with a trainer who understands chronic pain. Now, I meet with Lori Gordon at Personal Fitness for a 30-minute workout per week. Mostly, she keeps me from overdoing my exercise. I have confidence in her expertise, and I have come to trust her methods.

With these wonderful people around me, I have tools to make my day-to-day living easier (and the flareups of pain more bearable). I have resources to ask questions, to make adjustments to my medications and procedures. I have encouragers who have seen me at my worst. I'm incredibly grateful to them, and I highly recommend them to you (if you have such a need)!

U=Undergruate (B.A. 1986); Graduate (M.A. 2010)

(My apologies for not getting this posted in a more timely fashion; I'm struggling with abdominal pain, may be ovarian cysts; more tests coming soon.)

When I graduated from Duke in 1986, after 16 years of school, I was finished! I wanted to get into my teaching job, and quit learning! (funny, huh?) I was not one of those people who wanted to continue to get higher degrees (MA, PhD, MD, etc). I was finished with being a student, now I wanted to be a teacher!

I never even considered higher education, until I was teaching at Caldwell Academy. One of the benefits of teaching there was reimbursement for further education. Also, I had a friend who had just gone to a local Divinity School to get her MA; her stories and encouragement got me excited about studying the Bible in an academic setting. Although she ultimately quit, I still credit her with giving me a 'push' to investigate for myself.

People often asked, "Why are you going to Divinity School?" I didn't want to become a pastor or counselor; I didn't have any plans for using an MA;  I just wanted to know more about the Bible, Christianity, God, and my relationship with Him. So, I applied and was accepted at CEDS (now Carolina Graduate School of Divinity) in May of 2006. I was excited to start immediately with a "Faculty Directed Study" (mentored by the school's President) in the New Testament. I remember taking my new books to the beach, reading and taking notes while viewing the waves!

I'm the blonde on the left, in aqua, paying close attention!

When the pain started in May of 2007, I was one year into my MA degree. I had planned on taking one class per quarter (at night, while I continued to teach), and graduate in 4 years. I was doing well in school, and enjoying my classes, classmates, and professors. Taking just one class at a time helped me really get to the heart of the study, without feeling too overwhelmed. Unfortunately, the classes were four hours long (for me, usually at night, 6:00-10:00pm). The most painful stance for me is sitting. However, I talked with each of my professors, and they all agreed that I could take breaks and stand, or lay down at the back of the class, or do whatever physical activity I needed to do in order to complete class. Some allowed me to listen to recordings of class (while at home, supine on the floor). After a time, the pain management clinic recommended a TENS unit, which helped me stay seated for longer.

Graduation Day, May 2010

During the worst seasons of pain, when I couldn't work, when I couldn't do housework, when I couldn't have lunch with friends... I could study. I could learn. I could continue with my degree. Graduate school became a lifeline for me. Because of my commitment (and the flexibility of the staff), I kept taking classes. I took one whole year of Hebrew (learning to read and write different letters and backwards), even earning an award!

I was thrilled to graduate in May 2010, Summa Cum Laude. My Mom threw a great party for me, and even got a cake shaped like a graduate's mortarboard! I'm so glad that I decided to pursue higher education... I wonder if someday, I'll be a PhD!

T=Teaching-Training-Tutoring

As a little girl, my favorite game to play was "school." I liked school. I was good at school. I wanted to help my friends be good at school. One dear lady, who I tutored in Geometry in 10th grade, still credits me with her passing math! (Hi, Donna!)

I love teaching. I am trained and certified as a teacher. I am wired to teach. I don't have to wonder "what should I do with my life?" I know; I need to teach.

My first first experience with teaching, at Hampton Roads Academy, was wonderful and overwhelming! Just after graduating from Duke, I got a great job at HRA teaching 11th-grade English, and as the head of the Drama Department. I totally loved the work; but a regular schedule of 60-hours per week, plus 3 productions per year soon burned me out. After only two years of my dream job, what could I do?

I tried some other good jobs, leasing apartments, IT director for a law firm, consulting... I learned new things and did my work well; but none of it was as fulfilling as teaching. So, when I was offered the chance to teach Old Testament to 7th graders at Caldwell, I jumped! I determined that I would only teach part-time, so that would help me have a balance between teaching and life. I was asked to teach computer classes, which made sense. After a couple of years, other opportunities became available. With my background in design, becoming the Yearbook supervisor made a lot of sense. However, the time and extra effort required to put together a yearbook soon drained me. It seemed like never-ending work. The only things that really kept me going were the outstanding kids that I worked with. (I became much more encouraged about the state of the union when working with such excellent young people.). But, during my last year (2007-08), all that work plus the new pain... it was all more than I could take. I want to apologize to my students and colleagues for that year. The pain should have been a warning sign to stop teaching. But, at the time, I kept thinking that the next cortisone injection would solve the problem, and I could get back to teaching. However, the pain was overwhelming my ability to prepare well, and sapping my energy and enthusiasm.

After "failing" at teaching a second time, I wasn't sure that I would ever find another venue for my teaching passion.

This past fall (2010), as I was beginning to feel better, several folks suggested that I try tutoring. (I figured it would be a 'little bit' of teaching; maybe I could handle it.) I was hired by MasterMind Prep to teach Kindergartners how to read. I had never worked with such young students, and they were such fun to teach! This was a "tiny little part-time job," only 2 afternoons per week. Although it pushed my physical stamina, it was a wonderful outlet for my "teaching juice," an excellent distraction, and a chance to be productive again! (I didn't even let them know that I had chronic pain, and it didn't matter at all!)

This spring, I got an e-mail from a dear friend, and was subsequently hired to conduct computer training for a law firm in town (at HaganDavis, thanks Emily!). At just one hour per week, it again pushed my stamina, but built up my enthusiasm for teaching again. I hope to continue working with them over the next few months. I also got a referral for a lady who needed some one-on-one computer training. I enjoyed having her in my home for 3 evenings, and we will continue her training in May.

All of these opportunities to teach have really helped me heal. They have pushed me physically, expanded my training experience, and relit my passion for teaching. Perhaps I can excel in the long-term with one-on-one or small group training. I believe that my days in the traditional classroom are over. I think that my ability and desire to teach can be used in smaller groups. I hope that I will continue to find opportunities to use my teaching passion; this is what I was made for.

What is your passion? What were you made for? How are you expressing it?

S=Swimming, Aquacise, and Water in general

I have always loved being in the water: pool, ocean, bathtub... love them all! My mother has been aquacizing for many years now, and when Y-workouts and Curves became too strenuous for me, she invited me to go to her water exercise class. Although I didn't visit hers, I did find one of my own...

Mondays, Wednesdays, and Fridays, a group of amazing women meet in the pool (at our local YMCA) to exercise their bodies and socialize their minds. Most of them suffer from Fibromyalgia and/or other chronic pains. Did you know that if you are up to your neck in water, the gravity-force on your body is reduced by 95%? I feel wonderful in the water! Even on the most painful days, being in the water feels better than being on land!

I was fortunate to meet with some water-physical-therapists in the therapy pool at Duke. (Actually, at Lennox-Baker Children's Hospital. They have a heated pool, 95°, with rails and a ramp, really perfect for people with pain. They gave me individualized moves, and I confirmed what we do in our class. All was approved, with caveats for my personal needs (no jumping/jogging, no twisting, etc). I felt much more comfortable that "professionals" had approved this class, and recommended it for me.

I have been going to the pool regularly since last February. I find, now, that if I miss even one class, I feel worse. When I can go very consistently, I feel better. And, the ladies understand when I just can't get out of bed to get to the pool. Or, if I can just make it to the pool, but can only float and bob around. And, I understand the same for them.

I have laughed more in the pool in the last year than any where else. We have "joke time" where we tell each other actualy jokes; we have standard jokes (auditioning for the rockets; or if figure-8's are too hard, you can try 1's and 7's; racing cycles to the wall); and we laugh over whatever new thing has happened (we have one precious friend who just endured a 3-day colonoscopy, and she can laugh about it!).

Ladies, I told you that I would write about you. Thank you for welcoming me as one of your own, for allowing me to groan and moan or to laugh and joke, just as I need. Thank you for letting me teach the "newbies" (you know that I love to do it). Thank you for reminding me that I can laugh, even in the midst of trouble. Thank you for your wisdom that hasn't been "put out to pasture."

R=Reading (and other powerful distractions)

Distraction is powerful pain medicine for me. Anything that can wrench my mind from my self - that's good medicine. And, I have found that distraction can be found in many places.

If I am up to going out, then almost anything can distract me. Especially a fun meal with friends and family, where there's laughter and silliness and just enough sympathy to remind me that they all love me (without creating a time "all about me" - yuck - I have enough of those by myself). I love being outside, especially this spring. I really do feel like I'm coming back to life. Even just being out on my deck, soaking in the sun, makes me feel better. (Walking around the neighborhood is still too "high impact" for me, but I look forward to the day when I'll be able to do that again.)

When I can't go out, I have found distractions here at home. I have always been a voracious reader, but now I find that reading helps take my mind off of my self and into some amazing fantasy lands. My husband and I have both become kindle users (and fans). I found that there were times when even holding a book in both hands was tiresome (especially the nice fat books I enjoy). Kindle has made reading easier, and therefore more often done, than ever before. I thought I'd miss the feel and smell of the paper; I don't!

I've talked before about rediscovering the joys of TV. Also, I've become a bird-watcher. I know that it's an "old people" thing, but they're really wonderful! The birds have learned that when I'm out on the deck, it's lunch-time! And, they're not too afraid of me (as long as I keep still). Really fun.

So... what distracts you? What kinds of things are you reading now? I'm really enjoying some excellent fantasy series: Tolkien's The Hobbit, and Lord of the Rings; Robert Jordan's Wheel of Time series, and Terry Goodkind's Sword of Truth series.

Q=Quacks (and other bad doctors)

First, please let me define "quack." According to www.dictionary.com, a "quack" is a fraudulent or ignorant pretender to Medical skill." I find it interesting that a quack can be either fraudulent (intending deceit for profit) or ignorant (lacking in knowledge). For more information, check out www.quackwatch.org. Along with "quacks," I want to discuss "bad" doctors: those who aren't doing a good job, and/or who don't care to improve.

I don't want to wax philosophical on the nature and problem of quackery, there are a number of websites that can do that for us (see above). Instead, I want to share a few stories from my personal experience. Whether these doctors were bad or quacks, I'm not sure. I only know that I will never go back to them, and I will encourage anyone who asks to boycott them as well. (I'm not going to "name names" here, but if you'd like to know, just comment with an e-mail address and I'll send info to you.)

I went to a chiropractor many years ago, who helped me with pain before we discovered that I had broken bones (L5). Someone suggested recently that maybe he broke those bones! I don't think that's true, but it's a funny/horrible thought! The reason I'm putting him in this blog is because of my subsequent interactions with good chiropractors. This man would place my limbs so that I resembled a pretzel, and then he would (essentially) push me until something popped. Sometimes (even at the time), I felt like I was stuck at a professional wrestling event! The good thing is that he did help my pain (although I often felt "bruised" after his manipulations), and I'm grateful for that (and that he didn't make things any worse).

Again, during the long ago back issues (which ended in a spinal fusion), my Mom and I went to an orthopedic doctor here in Greensboro. I went to his office, with complaint of lower back pain. He had me lay face down on the exam table, and he proceeded to dig his thumbs into my back. At the time, I had not learned to say "ouch"; I was trying to be brave, and just grimaced instead. Finally, though my body spasmed to get away from his hands, and I got up from the table angry. My mother was incensed as well, and we stalked out of his office. We took my x-rays (although the secretary relinquished them hesitantly) and never looked back. Even now, I see that he has moved to another practice with very reputable doctors. It makes me shiver to see his picture on the wall. Recently, my Mom and I were discussing this horrible event, and she reminded me about part of her conversation with him. She asked about my having children in the future (I was 19 at the time). His answer was a rather sarcastic "not without a lot of pain and problems." Who would say this to a patient on their first visit? Ugh!

More recently (during the first year of my current pain, 2007), I was referred to a physiatrist for cortisone injections. At the time, I didn't know that I would have years of pain; I didn't know that I would see more than a dozen doctors and therapists; I thought that the physiatrist had my answers. In hindsight, however, I think I wasted a year with her. In the course of 12 months of injections, she shot me with cortisone 10-12 times (and each time was at the day surgical center, with anaesthesia and a day out of work). Now, I know that this is far too much  for my system to handle. Now, I realize that she was "shooting in the dark" without any plan. She just injected one spot and waited for results (or lack thereof). The next time, she shot me somewhere else; again, with no results. In the last month, she injected the same place 3 separate times, hoping to "overwhelm" the pain/nerves. Fortunately, after a year of no significant or lasting relief, I asked my family doctor for a new recommendation. But, I wish that I had known more at the time, and had not submitted my body to that kind of abuse.

So, those are my horror stories. Want to comment with one of your own?

There are some therapies that I haven't tried, because I think most of the practioners are quacks. Acupuncture did provide some temporary relief (but not enough to justify the cost). I never tried Reiki (seems to me the perfect quackery), or iris reading, or crystals. Most of the "new age" stuff seems too "out there" for me. What is your experience?
I have learned to take control over my own health and treatment options. Never again will I trust a doctor's opinion without a second opinion or further research. AND, I say "ouch" whenever a doctor does ANYTHING that hurts!

P=Pain Scale

The 10-point Pain Scale is used by doctors and patients to estimate the amount of pain percieved. Pain is a very personal problem, and the responses to pain vary widely. I know people who would yell and scream at pain that I would rate around a 5. I also know people who would only grimace at pain that I would rate at a 9.

Here is the "general rule" for
the 1-10 Pain Scale:
0 = No pain
1-2 = Can be ignored
3-4 = Interferes with tasks
5-6 = Interferes with concentration
7-8 = Interferes with basic needs
9-10 = Requires bed rest

My own personal rule for the 1-10 Pain Scale is as follows:
0 = There's no such thing as NO PAIN, but this is as close as I can imagine!
1-2 = I'm a little grumpy, but can't really complain; I've had worse.
3-4 = I'm officially grumpy, and I do complain, even though I've had worse.
5-6 = Time for extra pain medications, heat and/or ice, and couch time.
7-8 = I'm really unhappy now; don't want to get out of bed.
9 = This is my worst pain, while I'm still conscious. Please make me unconscious!
10 = I cannot have a 10 and still live. 10 is being eaten by a shark, or burned alive, or having my  skin ripped off. I don't generally rate anything a "10," because I would have to be dead.

I also like these pain faces better. Even though it goes up to 12, you can see that no one (in their right mind) wants to live above a 5 or 6.

I used to think that my tolerance for pain was quite high. But, after living with pain for nearly 4 years, I find that I am less tolerant than I was. Rather than becoming callused to pain, and able to take more in stride, I have become wimpy about pain, and the smallest thing looms high on my radar. Just like loading a camel (hmmm... anyone ever do that? anyway, you'll get the analogy), the last little straw will "break its back."

I have kept an almost daily log of my pain, so that I can look back over the months and see trends. It also helps me to remember that I have had more pain (which is encouraging for today), and I have had less pain (which gives me hope for tomorrow). I remember that, when I lived in 7-8 (remember my version of that), I prayed to live with 3-4. In January, after the injections in the correct place, I rated several days as ZERO, realizing that I didn't want to live with 3-4. These days, mostly, I'm living 0-2. Woohoo!

Here's part of a funny story from FireFighters and Paramedics, about a drug-seeking woman who complained of severe pain:

I asked my patient to rate her pain on a scale of 1-10 if a 10 was the most pain she had ever been in. This is a funny thing that goes on in the medical profession. We always ask the patient to rate the pain. I generally don't care what they say their pain level is, their body language always tells me what I need to know. So why do we ask? I digress. My patient said it was "a 10"! So I asked her if this was the single most painful event of her life. She looked at me as if I were stupid and said "No." So I tried to explain further. "Think of the most pain you have ever been in, that is a 10. How is this pain compared to that?" "It's a 10," she said, still with that look of 'you're an idiot' plastered on her face. Really not the best tactic if you're trying to get some pain meds. At this point I gave up. She obviously isn't in much pain, if any at all.

I'd like to hear back from some of the medical professionals out there. Do you really ignore the pain scale I give you? I've learned to say "ouch" when something you do hurts me (see tomorrow's blog, Q=Quacks and other bad doctors). Should I yell instead? How can I explain to you how much this hurts without dying (my 10) before I can get medicine?

P.S. My pain is a little better (like a 6, now), and I'll see my physical therapist tomorrow. My sister-in-law commented that, when we had lunch together on Sunday, she didn't notice my pain. I thought I was being grumpy, but I'm glad I didn't ruin the fun. She's doing fine; I'm so grateful that she's not in constant pain. But, being stuck in a chair all day is torture for someone as active as she is. Stop by her blog, and say "hello": Sheila Scribbles!

O=Oh, no.... setback!

I have had a setback over the weekend. My pain has been around 7 out of 10 (tomorrow is P=Pain Scale). Strangely, though, the pain has not been strongest at the "normal" spots (i.e. lower back). It is very strong at both hips; I can't lay down very long on either side; I have to turn like a roasting chicken on a spit (is that nice imagery for you?). Guys, I'm sorry for the next part... skip this if you want... I'm also having severe pain across the abdomen. Could be menstrual cramps, but I haven't had them this severely in decades. My muscle relaxers and pain medicines have keept it from completely dominating my weekend, but I've still spent most of my time in the fetal position.  OK, guys, pick up here...

Here's the key to survival right now: this pain is not fun, but it's not the end of the world as I know it. I have painkillers, muscle relaxers, stretches, rest, ice/heat, and other tools at my disposal to handle the worst of the pain. I really believe that it will subside in a day or two. If it doesn't, then I have an entire "village" of professionals to help me with it. Also, I have an appointment today with my pain doctor for my quarterly hip injections (just an office visit, and I should feel results in a few hours). Perhaps that bit of cortisone will calm everything down...

So, I'm resting, taking appropriate pills, and "holding down the fort" trying to keep my spirits up. Will keep you posted on my progress.

P.S. Tiger Balm Patches really work well for my muscle pain. Try them! (I don't get any commission or kickbacks :-)

N="New" Normal

"New Normal" is a phrase my husband created whenever I had changes (good or bad) in my pain. It is a recognition that there are things that I won't be able to do right now (later in April, Y=Yet). This time of chronic pain required me to deal with limitations sooner than I expected; sometimes I felt like I had already reached "old age" and would never feel "my age" again. I needed to recognize where I am and work with that.

This phrase became my touchstone for living with my current situation. When I had to quit my job, I had to adjust to that "new normal." After a while, not-working began to feel normal. When the pain management clinic prescribed heavy painkillers, I had to adjust to the daily routine and the change in my body (glad for the pain relief, but I was more tired, fuzzy-brained, and lethargic). That became the "new normal." When I could only spend 3-4 hours per day "vertical" (i.e. out of bed or off the couch), I had to adjust my schedule and my thoughts to that "new normal."

Later, after I started the supplement and physical therapy regimen, I began to feel better. I adjusted to that "new normal" much more easily than the downward spiral I had been living in. Then, in January of this year, my physical therapist discovered the inflammed bursas in the sacro-iliac joint. My pain management doctor shot cortisone into those places, and the majority of my pain went away within days! That was an excellent "new normal!"

My current "new normal" is very low pain (0-2, woohoo!). Now, I'm working on building my stamina, my strength, and my positive outlook. There are days when I do too much, and my pain/tired levels go up; there are days when I rest, and my pain/tired levels go back to the "current normal." I am looking forward to the next "new normal" that will look much more like the "very old normal" (circa 4 years ago).

I never knew whether I would recover from this pain. Using the phrase "New Normal" helped me adjust to where I was then. I cannot live in the past, nor in the future. I have to live life where I am now.

Even if things are not normal right now, I want to accept it as the NEW NORMAL so that I can still live my life.

P.S. My precious sister-in-law/love fell down the stairs, fracturing her leg and ripping her ACL. Fortunately she is not in great pain, and she has found a good doctor. I'm hoping that she will adjust to her "new normal," and praying that it will not last very long...

M=Massage

Ahhhh.... massage.... one of the great "perks" of chronic pain is the need for regular massage. (You didn't know that? It's a rule! If you don't get regular massages, you may explode!) Actually, massage  has been shown to help with chronic pain, and it keeps the rest of your body in better condition.

Pain changed massage from a "perk" to "therapy." Suddenly, the wonderful relaxation and invigoration of massage became a necessary part of my medication. For a time, I got massages once a week (anyone jealous?), and it was both therapy and fun!

I have been very fortunate to have a masseuse who has worked with me, even before the pain began. Prior to the pain, I got a massage 2-3 times a year, just for the fun of it. But, once the pain hit, I found that massage helped me relax, and helped stretch out the tight parts of my body.

Kim (my excllent masseuse) understands how my body has changed, and she is working with the new "pain-free" parts to help them heal. These days, she comes to my home, and I can just roll over to the couch when she's finished. I am so grateful for her work, her encouragement, her sense of humor! (If you need a masseuse in Greensboro, just let me know and I'll send you her info!)

P.S. I actually had a massage TODAY!
Massage makes life better, whether I am experiencing pain, or stress, or just regular life!

L=Laziness

I'll admit it... sometimes I want to be lazy. I will confess that, from time to time, I have used my pain to get out of doing chores that I probably could have done. Oh! I can't believe I just admitted that...! But, I'm writing this blog as a chance for me to look back and analyze what's happened to me, and laziness is part of that.

I fell into the routine of "resting" quite easily. After I quit my job (and after a year of trying to teach while in pain, it was time to quit), I was grateful to be able to rest and not push myself every day. I began so sleep later (my final entry, Z=ZZZZZ, will discuss sleep), which meant that I could stay up later. I have always preferred to be a night owl; the corrolary is that I have always preferred to sleep late. My friends joke with me that "I don't DO mornings!" (Somehow everyone has forgotten that I worked for years from 8:00-5:00 or from 9:00-6:00; even though I never liked mornings, I did it!)

I discovered the joy of TV again. I had gotten out of the habit of watching much TV, partly because of time restraints, partly because of other (more fun) things to do, partly because there wasn't much on TV that I really wanted to watch. But, now, I'm so grateful for my TV and DVR. I have hours and hours of "stuff" to watch that can give my brain a break from thinking about pain. There are some really terrific shows out there, and some junky ones that are still funny.

As I'm feeling better and beginning to push myself again, I'm struggling against wanting to "rest." It's a difficult balance to reach, sometimes, this need to rest and the need to be active. Unfortunately, laziness has influenced my life for a time; I really have to look at my motivations and think, "am I 'resting' because my body is tired or hurting? or am I 'resting' because I don't want to do whatever's on the schedule today?" At least, I'm aware of this tendency, and I can begin to fight it. Truth be told, I really prefer to work (later, you'll see P=Productive), and I'm happier when I'm active. But, at least for now, there will be a part of my day that I will rest and a part of my day to be active.

I don't want to let laziness interfere with my decision-making about my life!

K=Kindness and Sympathy

I often find it difficult to respond to the greeting, "Hi! How are you?" Most people don't really want to know how I feel, so I usually respond with "OK" or "Working on it" or "I'm here." I want to indicate that things are not wonderful, but not to entangle them in a long, sad story.

When my friends (who really want to know) ask the same question, then I try to get a feel for how much they want to know, before I answer. I have one friend, who suffers from MS herself, who asked me "How can I best ask you 'how you are'?" I thought this was an excellent question - and I highly recommend it for friends of people in pain. My response was "Please ask what my pain-scale number is today." (Later in April, P=Pain Scale, but it's basically a 0-10, with 0 for no pain and 10 for the worst pain you can imagine.) So, whenever she greeted me, she asked my number. It was a great way for me to quickly let her know how I was feeling that day (I generally lived around 7-8), and she could rejoice for a 6 or give extra sympathy for a 9. It was an easy answer to give, and if I didn't want to discuss further, then I could quickly change the subject.

Don't be afraid to hear the answer to "how are you?" People in pain sometimes really just need to tell someone how much it hurts. Or share the good news of a better day. Or relate the frustrations of ups and downs. People who don't have chronic pain have the same needs. The next time you ask someone "how are you?" - stick around for the answer. You just might be the ear that they need!

What I've learned: don't be afraid to answer "how are you?" with how I really am.

J=Jokes, Humor, and Laughter

Have you ever heard the story of Norman Cousins? The movie, Anatomy of an Illness, details his struggles with arthritis and heart disease.  Mr. Cousins devised some unusual ways to combat his pain, such as playing practical jokes and watching Marx Brothers movies.

"I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep," he reported. "When the pain-killing effect of the laughter wore off, we would switch on the motion picture projector again and not infrequently, it would lead to another pain-free interval."                                    - Norman Cousins 

I, too, have found that laughter can be a powerful painkiller.

In 2009, I was working out at Curves, but even their gentle exercises caused me to limp home exhausted. My Mom has been an aqua-cizer for many years, and she suggested that I try water exercise.

In February 2010, I joined a class for Fibromyalgia patients, designed to cause no further pain, to stretch and tone muscles, and to improve balance. I needed all those things, and the morning classtime was late enough for me to sleep in. So I went. What I had not considered was how FUN this class would be! We have 45 minutes together in the water. First, just being in the water takes the pull of gravity away, and my pain recedes significantly. Woohoo! Second, the gentle workout really does make me feel better. Granted, for the first month, I had to go home and take a 2-hour nap to recover, but eventually I gained more stamina. Now (more than a year later), I actually feel energized after pool exercise. (More about this later, at S=Swimming).

But, the best part of the water exercise class is the people. Most of them are ladies, and most are over 60. All of them understand chronic pain (they are either experiencing it now, or have recovered from it and are still exercising to keep it at bay). And, these ladies are FUNNY! We sometimes have "joke-telling time" while we workout. We have practical jokers who get others (and themselves) into funny troubles. But, best of all, we laugh together about almost anything ("elbows together for the 'boob squirt'"; "auditioning for the rockets"; "if figure-8's are too hard, try 7's and 1's"). Indeed, laughter is powerful medicine for all of us.

We know that there are "bad days" when it's hard to laugh; on those days, just getting to the pool can seem overwhelming. But, for me, it is really worth the effort. I ALWAYS feel better afterwards, even if I just float and bob in the water (rather than actually exercising). There are people nearby who understand, who encourage, who sympathize, and (best of all) who help me laugh.

What I've learned: even in the hardest times, laughter is truly good medicine.

I=Ibuprofen & other miracle pills

I want a new drug
One that does what it should
One that won't make me feel too bad
One that won't make me feel too good
                        -Huey Lewis & The News (back in the day)

Ahhh... we so want the "miracle pill!"  I want a pill to make my pain go away, without making me sleepy or irritable. I want a pill to make me lose weight, without having to work out or eat less. I want a pill to make me a happy person all the time. I want a pill to make me beautiful, and rich, and famous. I want a pill to clean my house (is that possible?). I want a pill to fix all my problems, and all the problems of the people I love.

But, it doesn't work that way. I find that I am incredibly grateful that there are SOME pills that can help with SOME of my problems. Without significant painkillers, I wouldn't have been able to get out of bed at all. Without an anti-depressant, I wouldn't have wanted to get out of bed at all! Without the supplements that I'm taking now to re-balance my body chemistry, I would never have had the initial energy to begin exercising and to hope for a better future.

Pills cannot solve all my problems. I need to listen to my body: rest when it's tired; push during exercise enough to increase my strength without causing too much more pain; I need to eat properly and drop another 20 pounds. All of these things are up to me - nothing (and no one) else can do them for me. Ugh... I want a pill!!! (insert knowing chuckle here)

Pills can create problems, though. As the daughter of an alcoholic, I've seen first hand the issues of addiction. I have made my doctors aware of this family history, and we are extra careful with the medication I take. I really don't want to go down the road of addiction for myself... I've seen where it ends. But, even taking pills can be a trap. Especially for painkillers, once started, it's hard to stop. And, pretty soon, the original dose is not enough... so the dose is increased. And increased. And increased again. Even when carefully monitored and non-addictive, the cycle of pain and painkillers can be hard to break. If you have a choice whether to start taking painkillers, don't. Keep trying complementary therapies (see C=, earlier in April) or find different things to stay away from the painkiller trap.

What I've learned: I'm grateful for pharmaceuticals, but wary of them at the same time.

P.S. Ibuprofen is not a "harmless" drug. I used to take it regularly, more than the dosage on the bottle. Besides eating a hole in your stomach, it can cause kidney disease. I have a good friend who is working to avoid dialysis, and her troubles are partly due to ibuprofen consumption. Be careful, even with over the counter medicines. Like AA, "take what you need and leave the rest!"

H=Husband / Spouse / Partner-in-life

From the 1976 movie, Rocky:

Paulie: [talking about Adrian] You like her?
Rocky: Sure, I like her.
Paulie: What's the attraction?
Rocky: I dunno... she fills gaps.
Paulie: What's 'gaps'?
Rocky: I dunno, she's got gaps, I got gaps, together we fill gaps.

One of the best things about having a partner-in-life is that together "we fill gaps." (I know, it's too corny for words, but just keep reading.)

I have only realized in the last few months (as I've begun to feel better) just how much work I have stopped doing. After the first year of pain, I had to quit my job. I had to stop moving the grass (which I actually like to do). I stopped cleaning much. I didn't do laundry, or vacuum, or mop. I didn't cook often, or clean up the kitchen, or dust. It took a good bit of energy just to get out of bed and onto the couch. I spent my time watching TV, reading, sleeping, and not much else. Going to the doctor's office or taking a shower or enjoying lunch with friends - I could do ONE of those in a day, and then rest from the exertion.

Somehow, though, things got done. I realize now that my husband just stepped in and worked. He didn't announce what he was doing, he didn't ask for credit for it, he didn't flaunt his ability to do it when I couldn't. In the fog of my depression and self-absorption, I hadn't really noticed. But, now that I'm coming back into life, I see what an incredible partner he has been to me throughout this ordeal. Where I have been weak, he has been strong. Where I've fallen down, he's given me a hand. When I've stopped doing, he has gotten it all done. And, through the years (we celebrate 20 in May), I've done the same for him.

My husband is a good balance for me. He somehow knows when to encourage me to do more or to push harder; and he knows when I need to stop, say no, rest. I sometimes have difficulty stopping a project just because I'm tired or hurting - I want to get the project done! He will often stop me in the middle to ask "how are you?" or "do you need a break?" - and this reminds me that the project is NOT the most important thing. I sometimes have difficulty saying "no" when people invite me over, or to join them, or to do something. At least, now that I'm feeling better, I WANT to do these things - but I still have to be very aware of how much I'm pushing myself. I don't want to relapse or even spend a day or two in pain to "pay" for an activity. My husband is my helper in these issues, when he can see clearly what I cannot.

OK, let's not go overboard (lest you or my husband get the wrong impression). After all, he's not perfect. I'm not perfect. Neither of us is particularly easy to live with; we both have a bit of "prima donna" in us. We don't always see eye to eye. We don't always want to do the same kinds of things. But at the end of the day, we're in this life together, and that's a good thing.

I hope that you have (or will soon find) someone who "fills gaps" with you.

G=Gratitude

“No one is as capable of gratitude as one who has emerged
from the kingdom of night.”
                             - Elie Weisel (Holocause survivor and Nobel Laureate)

Gratitude is an attitude (AA saying)...  Gratitude can lower stress, contribute to a happier life, and even make you feel more loved. Just search for the word "gratitude" on the net, and you can see a wealth of expressions and thoughts on the subject - almost all overwhelmingly positive. That's the kind of input that I want in my life. In the midst of the pain and problems, something as simple as an attitude change is actually incredibly hard. During my first round of back issues (as a teenager I had a spinal fusion), I learned this lesson about attitude: "I can choose to either be miserable and make everyone around me miserable, or I can grasp as much happiness as I can manage, and live my life as best I can." There is evidence that just making the muscles in your face form into a smile (even if you don't feel it) can help you be happier.

Several years ago, I read a survey that I wish I had kept. The responses were so amazing, that I want to have proof in front of me that they're real. I have to admit that they might not be. So, I'll pass this on, with the caveat that I can't prove it's a true story.

Cancer patients were asked in a survey "If you could live your life over, would you choose to have cancer again?" (This seems to me a strange question to ask...) The answer, by large majority, was YES. Not because they wanted cancer, but because of what the cancer forced them to change about their lives. Because of the cancer, they reset their priorities. They became grateful for every moment of life. They loved their families and friends more fiercely and more vocally and more often. They were better people because they had endured cancer.

Also, I had a neighbor who died from breast cancer. During her battle with the disease, her husband had a necklace made for her with the letters: DTBWCED. The letters were their code words to each other: "Doing the best we can every day." Wow. 

I wish I could say I was a better person because of chronic pain. I don't know if that's true. But, pain has done some of the same things for me as for the cancer patients. I have reset my priorities. I have become more grateful for life (especially for pain-less living). I spend more time with my family than ever before. I have more compassion for people in pain. I'm DTBWCED, and letting that be enough.

I'll leave this list at the positive things that chronic pain has wrought in my life. (Don't worry, the negative things will come out in time.)

What I've learned: As corny as it sounds, when things are worst, counting my blessings and cultivating an attitude of gratitude really do help.

P.S. I got a reply to yesterday's post that is so appropriate for today's topic:
"There's nothing glamorous about chronic pain. Those of us who live without it need to count our
blessings." - Angela (thanks for the insight)

F=Fybromyalgia

For years, Fibromyalgia has been a term for "you have pain all over and we don't know why." It is finally beginning to be understood and treated as a disease that affects the soft tissues of the body (muscles, tendons, ligaments, etc) and can cause excruciating chronic pain.

I was diagnosed with Fibro in 2009, and I thought "this can't be right... I have back pain!" My doctor and physical therapist agreed that my treatment for pain relief wouldn't change, whether or not I actually had Fibromyalgia. I think that my "all over" pain problem was more related to inflammation. Although I think I've consumed more than my share of ibuprofen (I laughed with a friend once that enough ibuprofen didn't exist in the world), it was not enough to handle the inflammation in my body. Dr. Watkins tested especially for CRP (C-Reactive Protein) which is an indicator of inflammation; normal level should be below 1.0 - mine was 15.16. Yikes! No wonder everything hurt! When he supplied me with a strong anti-inflammatory, I began to feel better almost immediately.

However, I have developed a new understanding of those who suffer from Fibro and other all-over pain disorders. I swim with some ladies who deal with this pain every day. No longer can we tell these folks "Sorry, it's all in your head!" I'm grateful that doctors and researchers are taking these debilitating illnesses seriously, so that there might be relief.

What I've learned:  I won't belittle anyone's struggle to live with pain.

E=Elders

"Elderly" may be WHAT you are, but "Elder" is WHO you are!

The people who have most understood, sympathized, and walked with me through this time of pain have overwhelmingly been older than myself. My "lunch buddies," my swim/exercise class, my Mom's small group - most of these folks are 15-30 years older than I am. Friends my age are compassionate and encouraging, but they don't have any idea what chronic pain is like. Please understand that I wouldn't wish this on anyone... but those who have been through some pain have a unique perspective that has been especially helpful for me.

I am ashamed to admit that I used to consider "old folks" to somehow be different from me. They couldn't possibly understand any part of my life, or have any wisdom to impart, or be active members of society. "Elders" were equivalent to "Grannies" who are meant to only play with grandchildren and bake as often as possible; otherwise, stay out of my life. Although they deserved (and received) my respect, I could not see how they were like me.

“When I was a boy of 14, my father was so ignorant I could hardly stand to have the old man around. But when I got to be 21, I was astonished at how much the old man had learned in seven years.”                        -Mark Twain

I'd like to add the following: "As I get older, my elders get smarter!"

I want to publicly apologize to all of the EXCELLENT ELDERS that I know (and to those I have yet to meet). I see, now, that you are actually people! (Insert chuckle here.) I realize, finally, that we have more in common than not... we all have a variety of (and sometimes longer) life experiences. The more I get to know some of the elders that are in my "village," (later in April, V=Village) the more excited I am to hear their stories and know more of their lives. They have traveled, had children, worked, played, and voted. They are volunteering, giving of their time, effort, and experience. They are continuing to grow themselves, learning new things and teaching new things. They have bad days, occasional bad attitudes, sometimes bad hair days, and they keep "starting over" again and again.

My sister-in-law always wanted to live with her extended family, with grandmothers and granchildren under the same roof (e.g. The Waltons). I never thought this was a good idea. As we've grown older, she may have changed her mind... and I may have, too! Now, I see the benefits to the older and the younger generations living together (provided that there is LOTS of space and good boundaries set in advance). It may no longer be feasible in our current age, but we are losing a good part of our culture as we lose touch with our elders.

I have long detested the way our society (in general) treats our elders; but this has been a philosophical, rather than personal, opinion. I now see these elders as PEOPLE, with dreams, memories, hopes, fears, and life left to live. This business of "putting up bodies" in hospital/homes is not good for the patients, for their caregivers, for their families. I have a friend who works in nursing homes, and frequently she is frustrated by the over-medication and under-care given to her patients.

I realize that there comes a point where a person needs more care than can be given at home. For those folks, they need excellent and compassionate professional care (and, please let me say that there are some excellent places available for this).  The home caregivers need to be guilt-free about providing other care for their elders. (I've seen my share of caregiving, and those people deserve to be twice-blessed!) And, as a society, we need to re-think the repercussions of lengthening lifespan without lengthening health, too. But, these are larger topics for another day.

In the meantime, here's what I've learned: my life is better because I have friends who are elders.

D=Doctors

I think that teachers and doctors should be the most highly-respected and highly-paid professions. Both have the ability to have a lasting effect on the people they serve; and that effect can be either positive or negative. Bad doctors, like bad teachers, need to be purged from the system. But, how can I tell whether this doctor is truly "bad" or is just having a "bad" day or is just stuck in a system that keeps him from thinking about ME and not just my back? In my first round of back issues (in 1984 I had a spinal fusion), I had one doctor who literally pressed his thumbs into my back until I couldn't breathe. He taught me that I need to communicate pain BEFORE it gets too bad; he also taught me that I can walk out of a doctor's office and never look back. (Although, I must confess that even today, when I hear his name, I get the shivers.) Was he having a bad day? Does he like to see his patients in more pain? Does he not understand what pain feels like? Either way, he taught me some valuable lessons - but I'm glad I didn't stay his patient.

I fear that good doctors are burning out because of the paperwork and other restrictions required by insurance and government. I know that good doctors are too rushed in their appointment schedule to adequately take time to help me. I know that good doctors are frustrated by their lack of ability to help or cure chronic pain - but I'm grateful that they're beginning to see it as a problem in itself.

My general physician, Dr. Lisa Miller, always asks about more than my symptoms. She takes the time to find out about my life in general, and include that info in her recommendations. She also includes me in her life (showing baby pictures, etc). This personal connection is worth more than gold to me. I don't know how she manages to spend so much time with me, but I keep coming back because of it.

I realize that I have now spent an inordinate amount of time with doctors, and I would like to thank ALL of them for seeing me, for trying to help me, for referring me to others. I hope I don't see any of you again for a LONG time...  :-)

C=Complementary and Alternative Medicine (CAM)

(http://nccam.nih.gov/health/whatiscam/)
In my pursuit of pain relief, I have tried a great variety of "regular" and "alternative" medicines. I have had both help and discouragement from both kinds of treatment. I think that the idea of "complementary" medicine (both alternative and western working together) is the best chance at health and wellness. (A side note: I had determined that I didn't want to see any "alternative" therapists without a substantial, personal reference. Later in April, I'll discuss Q=Quacks.)

I have seen a chiropractor (Dr. Dean Meylor) for more than 10 years, and he has been able to keep me upright and functioning. Even in the worst of the pain, he told me that he couldn't "fix" what was wrong (since none of us knew what it was), but he could help keep me going. And he did. He also offered accupuncture as a different kind of relief, and I accepted it from him. I would not have trusted many people to stick needles in me, and it did give me some relief for a short time. We tried it for a few months, but gave up after no significant change.

Two orthopedic surgeons confirmed that my problem was NOT surgical (whew)! I am so glad that they both had the integrity to turn away "my business" and refer me to other therapies.

The physical therapists I have worked with seem to be mostly personal fitness trainers. I couldn't understand why I would need to do exercise for my arms, etc. to make my back feel better. And that kind of exercise actually made my pain worse. I was referred to water therapists in the children's hospital in Durham, and they showed me wonderful water exercises that helped me gain strength without hurting. This led to my water exercise group at the local YMCA; this class, designed for folks with Fibromyalgia (one of my diagnoses), has helped keep me sane, laughing, and moving (even just a little), with other folks who are also dealing with chronic pain (bless you, ladies, I'll talk about you more during F=Fibromyalgia and S=Swimming).  Finally, I met Lorraine Kingham, a manual physical therapist who combines soft tissue massage with scientific physical therapy, and she gets GREAT results. She and I have often discussed the problem with "mass production" of medicine, especially physical therapy. This kind of exercise-based therapy helps many people (especially coming from surgery or acute issues), but when it doesn't work (as for chronic pain), then they have no alternatives to provide or suggest.

My pain management doctor is primarily interested in pharmaceuticals, and has never given me an indication that she can help me actually get better. The painkillers do help me cope with the pain, but don't help cure me. Cortisone shots given "blindly" have very little chance of working. When my "alternative" physical therapist found inflamed bursas, she showed my pain management doctor the right place to "shoot."  The combination of those two therapies worked beautifully!

I don't believe I would have seen my holistic doctor without some excellent referrals. Dr. Watkins gives the best of both worlds: an M.D. who understands the need to treat the whole patient, and not just the symptoms. His methods to improve the chemical systems in the body (blood, glandular, hormonal, etc) really worked for me. Again, he said that the supplements he provides couldn't cure my back problem, but he could make the rest of me feel better - and it worked!

I have come to this conclusion: don't give up in your pursuit to relieve pain. Western medicine is finally recognizing that chronic pain is a problem to be reckoned with, not just "all in my head." Where regular doctors cannot help, try alternatives. Be careful to research before you try (again, see Q=Quacks later in April), but there are lots of folks dealing with chronic pain, and some who have successfully overcome it (like me - yay). What worked for me may not work for you, but don't give up your search until you are well!

... Sundays ...

"Fine day, Sunday. Best day of the week. Why is that, Harry?"
"NO POST ON SUNDAYS!"


True for Harry, true for me!

P.S. Extra points if you name that movie!

B = Betrayed by my own Body

Chronic pain is a body-changing experience. Suddenly, this body (the only one I've ever lived in) is not acting (or re-acting) the way it always has. Suddenly, everyday walking becomes painful. Suddenly, reaching up (or down) causes a lightning bolt of pain down my back. Suddenly, I'm exhausted after just taking a shower. Even a playful nudge can start a painful spasm. I feel like I'm twice my age (I was 43 when this began), and my actions confirm my feelings. I'm walking slowly, carefully (scared to fall), and as little as possible. I used to LOVE walking: seeing the neighborhood, neighbors, trees, kids, sky... all the beautiful stuff around me. Now, it takes an effort just to open the blinds and look out. For a while, when I was out and people asked "how are you?", my answer was "I'm vertical!" It became something of a joke: an acknowledgement that I wasn't FINE, but I was at least out of the house.

I realize that older people (I promise, 40's are NOT older) must experience this same problem - just more gradually (I hope). I'll say more about these amazing folks on Wednesday's blog: E=Elders. I think that what I've been through must be similar to the later stages of aging. I look in the mirror (literally or figuratively) and think, "What happened to my life? My brain still feels young - why doesn't my body?" Are you familiar with the Picture of Dorian Gray? The man, Dorian Gray, doesn't age in his body, but his portrait shows all the years (and evil) that he accumulates. I feel just the opposite: my body doesn't "look" any older, but it "feels" like it's been abused for 100 years.

Chronic pain not only hijacked my body, but it affected my personality too. I have always enjoyed being around people, but now people make me tired. I don't want to see ANYONE, even the people I love AND like (and who love and like me in return)! I have always been an active, productive person; now I can't work, and that's OK with me. I don't want to work; I don't want to play; I don't want to do anything except lay on the couch. Not to mention that the painkillers are clouding my mind, making me even sleepier than normal, making conversation or problem-solving a major undertaking. I'm grateful for the painkillers, though - they're what allows me to be "up" at all.

Now that I'm healing and my pain level is WAY DOWN (yay!), I find that I don't trust my body any more. I'm scared to push it to see what it will do. I'm nervous about starting weight training to strengthen the newly correct alignments - but I must do it to keep everything aligned and strong. I'm incredibly grateful for each pain-less day, but part of me is waiting for "the other shoe to drop." However, I'm working on making those inner monologues more positive, and I'm remembering that pain doesn't have to last for a lifetime. Whew!

P.S. Today, the pain management doctor and I agreed to begin reducing the painkillers. Oh, boy!

A=About

It's appropriate the my first post should give some background to the topics ahead. In May of 2007, I suddenly began having severe, debilitating, chronic muscle spasms and pain in my lower back and hips. My back has always been a 'weak spot' for me - at 20 years old, I had a spinal fusion (L5-S1) - but, I have been healthy for years since then. This new pain was unexpected and surprisingly life-changing.

I spent the first summer with my Chiropractor, the wonderful Dr. Dean Meylor, who helped with the pain, but couldn't provide long-term relief. In August, I went to Dr. Elsner with Vanguard Brain & Spine, and got an MRI (which showed I was non-surgical). Spent the next 12 months receiving a variety of cortisone shots from them, with no relief. The next May, I had to leave my job teaching  at Caldwell Academy. The following August (2008), my excellent Family Doctor (Dr. Lisa Miller) recommended me to the High Point Pain Clinic (Dr. Maria Bodea). She prescribed significant painkillers (which helped), and more cortisone shots (which didn't). After a year with little progress, I visited Duke's Orthopedic (Dr. Brown) and Pain Clinic (Dr. Rogers). I spent a year of therapy there, including a nerve ablation (a very painful procedure), which also didn't work.

In August of 2010, I was referred to Dr. Chip Watkins. His specialty is chemical balances with supplements. He told me that he couldn't fix my back, but he could make the rest of me feel better - WOOHOO! He actually did! I began feeling better almost immediately, and in January 2011 (my 6-month check-up) I feel like a new woman!  At the same time, Dr. Watkins referred me to a miraculous physical therapist Lorraine Kingham, who manually works the muscles, tendons, ligaments around my back and hips. It was Lorraine that discovered that I had bursitis not only in my hip joints (trochanteric), but also in my lower back (sacrum). Once I could get cortisone shots in the right places, my pain was practically GONE!

So, I will daily consider some of the things that I have learned during this process. I want to say at the start that I am grateful for the numerous people that have helped me during this time, both in the medical community, my friends, and family - I'm coming back into life!

See you tomorrow!
Jane