It Has Been A Year

Hello Friends! It has been a year since I started this blog about a year in the life of someone with chronic pain. This may be my last post. I will write again if I have something truly valuable to others to share, but for now, I am planning to put this project on the shelf and take myself off of it.

The good news is that my pain is down quite a bit since I started this blog, and I have the blog in part, to thank for it. Writing helped me to legitimize my struggles and my quest for better health with all of its’ struggles and frustrations. The friends I met through this blog have been some of the greatest support I have found because you truly understand what it is like to exist with constant chronic severe pain.

Today, I feel lucky, because I may have found a solution to my pain; something I had given up hope for many times over the last almost 6 years. For the last few weeks my pain has moved from chronic, preoccupying, intense, severe pain; to a more – within the range of normal – pain. This is a huge difference, and maybe what people who do not suffer from chronic, severe pain don’t understand. Everybody has aches and pains, and the older we get, we get more of them. But severe chronic pain is unrelenting. It is torture. It is constant. It is a hundred decibel alarm is always ringing – and you have to find a way to live with it without killing yourself just to make it stop! You feel like a burden on your loved ones, and you grieve your old self and what you could once do, and how much you could once contribute to others and the world. You grieve fun and freedom. Oh, how you grieve the loss of freedom.

I am so lucky! It is not solely luck, for me, but there is luck in it. I say never give up trying to get well. Don’t believe anyone who tells you there is nothing anyone can do. Keep searching for answers.

I am not out of the woods, and I don’t want to jinx myself, but I believe I have an understanding of my pain and the solution for it. I believe my pain problem was set in motion when I was 12 years old and went roller skating for the first time. My parents were divorced and my father took my stepbrother, stepsister and I to the roller skating rink. I was not athletic, but I wanted to feel normal, loved and part of his new family. I didn’t know how to roller skate or to protect myself if I fell, so I just plunged ahead bravely (and foolishly) and pretended I knew how and went around that rink. So when I lost my balance and fell backwards, I went blank, didn’t brace my fall, and dropped straight onto my tailbone.

It was a really hard fall, and  the end of roller skating for me. It hurt so much, but I sucked it up and when my father brought me home, where I lived with my mother, I just lay in bed unable to walk for two or three days. Eventually I got back up and started walking as if nothing had happened. No one took me to a doctor, not that it would have helped, but to this day, no one in my family even remembers this incident.

I believe that the muscles in my coccyx went in to spasm that never released and set me up for future injury that day. It set me up for a lumbar-back injury during a dance class when I was only 18. Add 30 years of sitting, driving, exercising, toning, adding muscle spasm to muscle spasm. Include getting severely rear ended by a car going full speed while I was stopped at a red light, and a few minor car accidents after that. If you buy into Thomas Griner’s theory of muscle spasticity (and I do), then it is no surprise that one day my back either spasmed to the point of severe pain, or the muscles pulled so hard that tendons tore, putting me over the edge into severe pain. I think this is why small movements, like taking something out of the dishwasher, can “throw your back out.”

Then the medical field put me through their useless paces: injections, surgery, electrical stimulation, even physical therapy doesn’t make sense if it can’t release the chronically spastic muscle. Griner believes that stretching and certain kinds of exercise only make the spasm worse. Most of the medical field does not understand how muscle works or the role of muscle in many chronic pain scenarios. Doctors, physical therapists, traditional chiropractors and other well-meaning helping professionals only make the spasm worse, and that is what happened to me.

My way out is working with Rodger Phillips DC, who trained with Thomas Griner years ago. I was going twice a week, and now I go once a week. The progress is slow, but noticable. I am now straddling two worlds: the one of chronic severe pain, and the one of normal pain with which one can function and participate in life. I am so grateful to be here now. I never thought I would get this far. I plan to continue my treatments and see how well I am able to get.

I can work a little more and my interests are returning. I am more engaged with work and enjoy it much more than I did a year ago. I can sit longer at restaurants, allowing me to enjoy socializing more than I was able to do even a few months ago. I can carry slightly heavier things without a flare up (slightly being the key word here). I can walk a little longer, and last longer at housework with less need for breaks (but I still need them!) So I feel ready to let this blog go and to focus on other things.

I thank everyone for reading this blog! I thank everyone who has reached out to me and left comments and been so supportive. Thanks to my friend, Mark, who motivated me to keep writing. Thanks to my husband for reading and liking my posts even though he heard it all before. Thanks to my cats for loving me no matter how bad I was feeling, for cuddling and caring for me, and for keeping me company while I write.

And for my fellow chronic pain warriors I wish you self-acceptance, self-kindness, love, support and understanding from important others; I wish you the courage to hope and keep looking for solutions when those who are supposed to help you fail. Keep looking. I wish you the permission to stop looking when you must, but look again when you are ready. I wish you guilt-free and shame-free rest, and distraction from pain in whatever form works for you (for me, sometimes the silliest things: The Bachelor on TV, or the Pet Rescue game by the makers of Candy Crush Saga. Oh, and brownies on the worst days.)

Most of all, I wish you the certainty that your value does not diminish with chronic pain. I had a yoga teacher (back when I could do yoga) who used to remind us that “We are human beings, not human doings.” Please remember that you are valuable, not for what you can accomplish, but for who you are. That value is always there.

Qi Gong Where Have You Been All My Life?

Hi Everyone! Since my last post, I have continued to commit to restoring my energy, and it has been working. I even had a busy week! Busy for me is increasing my practice at work, seeing friends, and even going out on an anniversary date night. I am not able to sit through a movie at a regular theater, but on special occasions my husband and I splurge on one of those luxury theaters with reclining seats. I can usually enjoy a movie that way with a rare need to stand up. My thing is that in order to minimize my back pain, I have to change positions frequently, so I move the reclining chair quite a bit, and my husband puts up with it cheerfully. I am so lucky to have him!

I said I would follow up with my report of the second Tai Chi DVD, Scott Cole’s Discover Tai Chi for back care, so here it is: This one was better for me than Tai Chi for Beginners with Chris Pei, mainly because it kept me moving. I was confused by the dvd at first because I clicked on “Introduction” in the menu, and it started the movements and just kept on going until 20 minutes in, I decided to stop, just to be on the safe side. The menu provides the option to select “chapters” but what it really seems to offer is where you come in to the routine, so if it says Introduction, you start with the intro, if it says one of the movements names, you come in then, but it really is a full 30 minute routine. So, I have done the first one, the one in which he is in the studio. It moves on to a practice on the beach, but I haven’t done that one yet.

On the plus side it kept me moving. On the riskier side there were movements that were hard on my knees and stretches that were held for too long. I was very careful and adjusted my movements accordingly. I didn’t hold a stretch for example, I just bent as I could and then gently came up. So what I’ve been doing, is alternating this with the Tai Chi for beginners warm up.

Qi Gong came into my life as a result of my last blog post, and the kind support of fellow pain warrior from the blog My Life With Chronic Pain. She left a comment recommending Qi Gong, and so I finally tried it this morning via YouTube. I found something called Morning QiGong with Lee Holden. It was a 10 minute segment with gentle movements and breathing developed to wake up your Qi or life force energy. It felt really, really good; and gave me enough energy to write this post today.

I have struggled with low energy my whole life. It is responsible for my great love of coffee. Now, I have found a new ally. Qi Gong. It Gongs my Qi. It wakes up my life energy. I am a believer.

Exercising! – Or At Least Trying To…

I have decided that my goal is to get my energy back, even with the lingering, burning muscle pain in my back. It occurred to me that my next step  should be to find a gentle, regular exercise that I can do each day. I have been so sedentary even with my semi-regular walks. The heat in the San Fernando Valley has stayed in the triple digits for most of the summer, so I have to take my walks at night, and sometimes I am just too tired. Tired only brings more tired. I have to change this.

The plan is to try Tai Chi. I bought two DVDs from Amazon: Tai Chi for Beginners (with master Chris Pei) and Discover Tai Chi for Back Care with Scott Cole. I started with Tai Chi for beginners, thoroughly enjoying the 10 minute warm up. It got me to breath deeply and had me move muscles that I usually ignore, such as my neck and shoulder muscles. The warm up felt great. And I could actually do it! Hooray!

After the warm up,  I began the first lesson: The Opening, and Parting the Horses Mane. Master Pei has you stand still and breath for what feels like a lifetime before going into the Opening, and then does it three times. Standing still in one place hurt like hell. My lower back burned. I tried very hard to make it through the lesson, but almost as soon as it had begun, I had to stop.

The next day, I considered just doing the warm up, but couldn’t give myself permission for only that. I felt that I should at least try to learn how to do Tai Chi! It is only Tai Chi for crying out loud! But again, I could not stand still for more than a minute (after the warm up). It was so disappointing, but on the bright side the warm up really energized me, which was my goal in the first place. So, I may not have learned Tai Chi, but I am feeling better!

I am not giving up on the Tai Chi idea. Tomorrow I will try the other DVD. I will let you know how it goes!

Getting Better…

I am pulling myself out of my usual lethargy to write today. I started this blog on October 14, 2015, intending to write for one year about living with chronic pain and the struggle to get my life back. Recently, however, I don’t know if I will complete the year of writing. I am so tired of focusing on pain and all my attempts to recover. Now, I know this sounds like giving up, but it is quite the opposite! I am getting better! My work with The Griner Technique and Rodger Phillips, DC. has moved me out of “the stuck place.” I am not out of the woods, yet, but the pain is changing, my muscles are loosening up, my ability to go for walks has improved 100%, and my ability to sit seems to be improving by a small margin. The progress is slow, but measurable. This is the right treatment for me and I am getting better. There is a chance that I will not be in this chronic pain for the rest of my life. There is light at the end of the tunnel. I should be jumping up and cheering and running around, but I’m not. I am afraid to get my hopes up. I don’t really know what will happen. I don’t know if I can trust this. I feel so close and yet so far away from the life I once knew and the self I once inhabited.

I used to be a very enthusiastic person, motivated and ambitious and full of life. I used to inhale books on psychology, my field of work and interest. I used to speak and write on the subject and wanted to write a book one day. But I don’t know who I will be if I indeed get better. Chronic pain has changed me. There were 4 straight years on opioid pain medications, then over a half a year on Kratom. Although I am off all pain meds, including anti-inflammatories, (with the exception of the occasional Gabapentin 100 mg), I am certain the meds have taken a toll from which I am still recovering. Then there is the sedentary lifestyle I had no choice but to fall into. My daily walks are helping me counteract that, but I am easily pulled into the lethargy that I struggle with each day. My energy and motivation has been replaced by a narrow comfort zone.

My interest in socializing is extremely low. Sitting at restaurants or parties or movies or anywhere, for that matter, has been so painful that all I really want to do is go home and escape the pain. The ability to sit without pain has not returned yet, but I have moments when I notice it doesn’t hurt as much as it used to for a while. If I sit too long the pain comes back with a vengeance. Sometimes too long is 20 minutes, sometimes an hour, as opposed to the beginning of this ordeal during which I could not sit for a second without searing pain.

I am in a strange, somewhat depressed, in-between place. I do not say this to feel sorry for myself. I am just telling it like it is. I am not in searing pain (Yay! Counting blessings right now!), I am not out of pain (Yada yada yada… same old, same old), I don’t want to take on responsibilities I can not fulfill, so I am not increasing my work or socializing yet. So I am waiting, working part time, and going to my treatment sessions with Rodger. That’s it! And trying to get something done each day, whether it is for my work, my home, my cats, or my husband. Or my car… My life is dull, but mostly comfortable. I enjoy my time with my husband, simply being in the same room. I enjoy snuggling with my cats. And this is how things are….

 

Commitment

Today I drove to Santa Clarita in the middle of the raging Sand Fire to get my treatment, so you know I am committed to getting better! I didn’t know what to expect, but R didn’t cancel and said he was fine when I sent a worried text on Saturday. Of course, I brought my camera in case I saw something interesting, and I did: the smokey cloud above. I also saw the fire and two water-dropping helicopters, but but didn’t stop to take a picture (the old me would have, back when I was up for adventure). And, luckily for R (and me) the fire was burning on the opposite side of town.

Last week the treatment went well. I was sore in a good way, feeling the excess lactic acid releasing into my muscles and bloodstream to be washed away. The pain was at its’ lowest Saturday morning, but by Saturday evening it began to return with a vengeance, so I learned that treatment once a week is not enough. This week I am going back on Friday. Hopefully we can move this pain, reduce this behemoth, get it out of my way and stop going forward and backward, back and forth, over and over and over like Sisyphus. Sisyphus was committed, but unlike him, I am trying new ways of reaching my goal.

Confusion is Part of the Path

I saw J again on Wednesday, and it felt like she was not doing anything to my muscles, except feeling around here and there. I’m sure there was more going on, but I couldn’t feel it. Then I felt better for a day or two, but then went back into lots of pain in my low back, butt and hip. It is so discouraging and extremely confusing. She said she is working through layers and that layers were coming up. I asked her to explain what she meant by that, but she just said that muscles get spastic from the inside out, and that Thomas (Griner) talks about layers. Later, I went to look it up in his book. He says that you have to work through layers of spasticity to get to the core muscle spasm underneath. So it’s not that layers are coming up to the surface, but that deeper layers become more accessible. That makes sense. But I have to wonder, is she really doing that? How do I know? How patient should I be? The treatment is costly and I have to drive for an hour in stop and go LA traffic to get there, which really hurts!

So, I am going to go back to R who is a chiropractor who does this treatment, is covered by insurance, and is easier to get to. I have been to him many times before, and he wasn’t able to help with the chronic pain, but I think I had him working in the wrong areas. When I have him work up and down my back, I don’t feel better, but when I have him work on my hip, glute and psoas muscles I do get some relief. I have a tentative appointment with him tomorrow, and I booked it as a double session, which for him is an hour. My intention is to be very clear and articulate about what I need, and to ask him to work through the layers and to give my feedback about what he notices about the progress of my muscles. I think my core problem is coming from my right gluteus muscle. Minimus, medius or maximus, I am not sure, but anyone who works on me can feel it. In the words of one chinese acupuncturist, “Your ass is ANGRY!” Please imagine that said with a thick chinese accent and you will understand how awesomely funny that was.

Learning How To Heal

I am working with Thomas Griner’s protege, J*. This feels like the most promising treatment so far. She seems to be able to see and feel the contributing patterns of muscle spasticity, not just through my low back, but throughout my hips and torso. She told me that I tend to tuck my pelvis under and that may be the problem that lead to my pain. I have been to so many physical therapists, but no one has ever mentioned that to me or told me it is a problem. J. stood me in front of a mirror and showed me how to easily adjust my posture in a natural way by moving my weight further front onto the balls of my feet, and release my butt/lower back letting it “drop”. I could feel my whole body align without holding it stiffly into a so-called “good posture” stance. This felt more relaxed and healthier. She also showed me how to sit in a way that kept the curve in my lower back. To my surprise, sitting this way didn’t add to my pain the way most sitting does. Why had no one told me this before?

During the treatment, she worked in the usual low back and butt area, but also worked on my ribs and my psoas muscles.

My pain is down from last week, and I have been able to enjoy longer walks (up to 30 minutes if it’s not too hot out)!

Each morning I stand in front of the mirror and lean slightly forward onto the balls of my feet, and feel 10 years younger.

 

*I will give more information if this treatment works. It is my policy to publish names and information for people who help me, and just initials for those who don’t, and I need to take time to see if they will. This is to protect well meaning practitioners who aren’t able to help me.

The Next Step

I can’t believe it’s been 4 months since my last post. 4 Months! Where does the time go? The moments, days, weeks, months all blend into one glob of pain filled days. Time stands still. I get tired of talking about life with chronic pain and wait for good news before writing again, yet then I miss out on telling you about the journey.

I am no longer seeing Dr. M. My pain plateaued at about a level 5, which seemed to bother him for different reasons than it bothered me. He was worried about insurance not paying if I wasn’t getting better, and one day asked me to put a 4 on my chart. I wasn’t feeling my pain was at a 4. This disturbed me. Something didn’t feel right. He encouraged me to do more acupuncture at his office, but it became clear to me that acupuncture was flaring me up more. Acupuncture has never worked for me, but I had been willing to give it another try. I told Dr. M. that it was flaring me up and he looked incredulous, like he had never heard such a thing. Then he told me that rather than continue as we have been, I should go to physical therapy. I have done months and years of pt before, but I was willing to try his recommended pt. I called them to set an appointment. They took my insurance info and said they would call to let me know if they take my insurance and if so would set an appt. then. I never heard from them. I never went back to Dr. M. either.

I had a better idea. Through my work with Erin Wayne, my massage therapist, I gained a great deal of awareness about what is causing my pain. The cause was distilled down to extremely tight muscle in my butt, hip and over and under the iliac crest on the right side. Some of this tight muscle was a problem before my surgeries. I am certain that the surgeries only added more muscle injury to my already dysfunctional muscles.

My mind went to a treatment I had tried that didn’t work for this pain but had worked for past problems. A treatment that has gone by many names, invented by a man named Thomas Griner. It seemed like the right time to try it again, but to either go to Thomas, himself, or to try a new practitioner. I located his protege, and set an appointment. After my first treatment I had 5 days of very low pain as low as a 1!! It crept back up to a 5-6 by my next appointment 10 days later after she came back from vacation. After my second treatment the results were not as dramatic. I drove through a lot of LA traffic to get to her and back, and then had to do a lot of sitting over the next few days for work. The pain was down but not a lot. The good news is that after seeing her one time, I was able to stop taking the meloxicam with no increase in pain. I see her tomorrow. Please wish me good luck. I have an unusual level of confidence that this treatment will work. I hope I am not wrong!

I highly recommend Thomas Griner’s book: What’s Really Wrong With You?

Can I Get Through The Stuck Place?

I have a core pain that has stuck around for the last 5 years. It feels like a bruise inside L/5-S/1. It is so deep. The cause of pain doesn’t show up on an x-ray, but the MRI shows several possibilities such as an annular tear and degenerative disc disease. Supposedly, an annular tear or degenerative disc pain can be alleviate by steroid injections and/or nerve blocks, but I have had those procedures on several occasions and on many disc levels and have never had relief from that, leaving my diagnosis nebulous.

I am seeing Dr. M., my new chiropractor, 3x week. We stopped the jackknife machine (which he calls the Superman) because by forcing a stretch into my lower back I got flared up again. The good news is that the flare up is down, and my pain is back to what I describe as a level 5 on the pain scale. Anything higher than a 5 and I need pain medication to cope with it. I am taking Meloxicam, an anti-inflammatory, every day since starting with Dr. M. who believes this core pain is inflammation.

We have added acupuncture once a week to my treatment of 3x week adjustments, water bed and a roller machine that mobilizes all levels of my back. I also still get my very helpful massage therapy once a week as well. This has all got my pain down to a 5. BUT, the pain still limits almost everything in my life since sitting is still extremely painful! It is like sitting just puts weight and pressure on the “bruise” inside my lower back.

I have hope that this treatment will continue to improve my pain level, but I really don’t know. This is a stuck place. I am learning to be patient with myself and actually lower my expectations of what I should be able to accomplish personally and professionally with this limitation of pain. Going easy on myself lessens the depression and allows me to take better care of myself.

 

A New Adventure In Healing

Greetings to my friends and followers! I am so sorry it has been a while since I last posted. I was really at a plateau with my recovery and with my mood and really had nothing to say, that is until last Wednesday. The Monday before, I did 10 minutes on the elliptical. It went fine and I was committed to getting in some regular exercise throughout the week. Exercise is mood boosting and health producing. I really thought I could do a little a day. Then last Wednesday, 2/17, I got on the elliptical, and immediately felt sharp, flashing pain right into my lower back and right buttock. It felt like I was being shot from the inside of my body. Needless to say, I got right off the elliptical, which stopped the pain, layed down on my tempurpedic bed (which I love), and proceeded to play Candy Crush for about an hour just to escape my utter frustration and discouragement.

Somehow when I play what I call my “stupid games,” my brain is still processing everything. I felt frustrated with my current treatment, especially with my chiropractor who has been late my last three sessions, leaving me either sitting in the waiting room, flaring up my back in the dreaded sitting position, or lying in the room with the electrical stimulation (which I hate) long over. Last time I was there for a total of 1 1/2 hours. Then they didn’t return my credit card (which I didn’t realize either), so after I left they called me and I had to come all the way back to get it. When I got there they complained that I took too long and that they wanted to go to lunch (even though they could have gone to lunch and left my card with anyone else working in the office, such as the other chiropractor and anyone on his staff!) By the time I was done, I had invested two hours of my day and was given attitude, to boot.

So, after my flare up on Wednesday, who was I gonna call? Not Ghost-Busters, but not my chiropractor’s office either. So, Thursday morning during a break in my office I went on Yelp and looked for a new chiropractor. There I found a Dr. M. who was just in the very building next door and had 67 great reviews! All I could think was, why didn’t I see this before? I read a bunch of his reviews (all superlatives) and looked at his website, seeing that he includes massage therapy and physical therapy in addition to adjustments and takes most insurance plans.

Feeling urgent about getting help, I walked over after work and asked for a new patient appointment. The receptionist handed me paperwork to fill out, and I gratefully filled it out. Then she said it would be a few minutes. Incredulously, I asked, “he can see me now?”

“Yes.”

The decor was gray, black and maybe some green, a little dim for my taste, but still somewhat spa-like. Young, hip looking people were coming in, and then being told to go to the waterbed. Hm. Soon I was taken into a consultation room, and a thirty something looking man came in and introduced himself as Dr. M. He was friendly, approachable and asked quick questions apparently looking for a simple understanding of what has, for the last five years, been a very confusing and complicated situation.

After the consultation, began the amusement park part of the program. He took me into this room that had 4 beds, 3 of which had young men lying down on them. The beds seemed to be vibrating. He had me sit on a solid part, and then lie down onto a heated bed, explaining that it was filled with water. He turned it on and I felt pulsing mounds of warm bed massaging me. Again, he said it was all just water. And then he walked away to attend to some other patient somewhere. I closed my eyes and tried to relax into this heated waterbed/massage machine. It wasn’t difficult. Truly, it felt amazing. Wonderful. Much better than the awful electrical stimulation that I received weekly at the previous chiropractor’s office.

Eventually and sadly, the machine turned itself off. I remained lying on it, enjoying the heat, until Dr. M. returned. Then he brought me into another room that had two machines on it. He had me lie down on one on my back again, and I noticed it was not heated and the room felt a little cold. This machine was like a wave machine, rolling first my upper back, middle back and then my lower back, and then back up to my upper back again. The lower back part was a little painful, so he turned down the intensity of the wave, which helped a bit. He left me to it. The machine perpendicular to me had a bald man on it on his stomach. The machine was moving his legs down in a jackknife position. I closed my eyes and let the machine move my back up and down until the lower back was used to the motion.

The next stop was another room for the adjustment. He did my lower back, middle back and my neck on both sides. He explained that the cracking sound is not bone on bone, or bone on disc, but is the sound of the release of gas between the vertebrae. I didn’t know that before!

The last stop on this rodeo was the jackknife machine my fellow patient was on earlier. This one scared me the most. Dr. M. asked me to lie on my stomach and hold onto a bar over my head with my arms straight. Then he asked me to hook my feet over the bottom of the bed and hold on tight with my feet and toes. The machine brought my legs down stretching my lower back right in the sore spot. This worried me because I have been flared up many times in the past by stretching, a spinal decompression machine, and also by an inversion table. This one, though, was not a static stretch, but rather moved me in an up and down motion. He put it on low intensity, and I took one for the team. The team of me, my back and I.

When this was all done, he asked me how I felt. It was very hard to answer! That was definitely the most movement my back has had in over 5 years and I think I was in shock. I did feel taller and lighter though, and kind of enjoyed the whole routine. It was something different, at least. He asked if I wanted to come back and I decided to give this treatment a try, so I said “Yes.” He recommended that I skip a day, and then come in the day after that, which I did. I felt better during the day in between, so I felt some hope.

I have now been three times, and am scheduled to return 3 times a week for the next two weeks. My results so far are inconclusive. My sore spot feels looser, which is a good thing; but the buttocks pain and leg pain which started after the sharp, shooting pain last Wednesday still remain and may be a little worse. I am confused, as usual. I told Dr. M. about the increased butt and leg pain, and his take on it was that I had been so tight for so long that the butt and leg pain went numb, and that it really has been a problem all along. I don’t know if I buy that, but I will give him and his treatment the benefit of the doubt for now. Overall, I do not feel worse, just different. At least I can look at this new treatment as a new possibility for  healing, and certainly a new adventure. I will keep you all posted.