Posts Tagged ‘back pain’

Abandoned...like a polar bear on an ice floe

This is me.

I’ve literally been abandoned by my last remaining health care providers.

This is exactly how I feel as another boot strikes the edge of my ice floe. I float out farther into the icy waters, towards a slow and certain demise.

Each of those boots belong to a health care provider – a staff member of a hospital – even a “Patient Advocate” at a world-famous hospital in Boston. Names will follow. I will not go silently into that good night. They will be decloaked. Stay tuned.

Who put me on the floe?  I was forced there by the medical “professionals” that refuse to be proactive. They can’t be bothered to pick up a phone and call a colleague to see if they can help me or even ask, perhaps, if they know someone who might.

They can’t be bothered to do a simple internet search to find out how to treat someone with my rare and complex conditions.

(I’ll even tell them where to look…Medscape, Mayo Clinic, NCBI, Vanderbilt University, Google Scholar.)

It takes seconds.

If I do that, I will be labeled and ostracized (remember the “Seinfeld” episode where that happened to Elaine Bennis?) and my fade-out into black be hastened by their turned backs.

They forget I’m intelligent. They forget I have medical background and medical training and decades of experience advocating for myself and my mother.

[How tragically sad it is when I think about how poorly she was treated. I am being treated just like she was, so she ended her suffering. She too was shoved onto an ice floe. And suffered for 9 years despite of everything i tried to do to help get her some “care.”]

These so-called experts don’t and won’t even pay attention to any of the recent FDA approvals for treatments that could help me.

They won’t pick up the phone and reach out to specialists in the area to dee if they are interested in helping me.

They mindlessly throw out referrals to random places that I have already been (they don’t bother to read my record – to learn about ME), They tell me to “learn to meditate” or “do yoga.”

I have. I did. I am unable to do so.

Then, they insult my counselor. They tell me to talk to her – or that I need to find a new one.

Read my file. (Oh no – that would take time! Doctors are far too important and busy to read a patient’s file. “Only 5 minutes” – “only 2 questions” – “what ONE condition do I want to talk about today?”

Learn about my medical conditions. Read my file. Care about me. Please. Someone just CARE.

Don’t treat me as if don’t matter, as if I am a waste product – isn’t the first line of that all important oath that you take, “First, do no harm?”

Well, your acts and omissions ARE doing harm. Wake up. Pay attention. Realize what you are doing.

Every time your shove me further out into the icy waters, away from you so you won’t have to deal with me, you hurt me. You hurt my husband.  You hurt human beings.

As in the excellent movie, “Gattaca,” I am reduced to the status of being an “in-valid.” One that is not worth the time to help; to waste resources on; to listen to; to treat. A lesser part of society. Disposable.

Shove my floe again. Go ahead. Perhaps you will get lucky and YOU will be the one to cause me to wither and die sooner and the you will not have to be bothered with another patients like me. You can spend your time treating sniffles and GERD and Type 2 Diabetics. Tell them to meditate their problems away and be mindful to help their conditions improve.

But one day, your inattention to patients like me will catch up to you. I promise.

I intend to be on that list of those that YOU ignored and let languish on our ice floes.

Any talents and contributions I had the ability to make to the world will vanish as my floe heads farther out to the horizon – out of sight, out of mind. Good riddance.

I will expose you for your acts and omissions –  that will be my last act. That will be my legacy.

TOO harsh?  Well, that is too bad. This is how I feel.

I have been kicked out of the human race, shoved out into the cold, icy world alone to slowly die. All the boots that have shoved my ice floe farther into the icy waters – my former PCPs, my PCP’s practice, my former orthopaedic surgeon, my anesthesiologist, my former autoimmune doctor, my former cardiologist – all have turned their backs on me and returned to their warm and spacious mansions and forgotten about me. I am just an insignificant blip in the world. After all, there are 7 billion others (and counting – God help us…) Why care about just one?  Especially another one over 50. The world belongs to GenX and the Millenials. Those of us that are Boomers, well, we are just wasting the resources that should be reserved for THEM. the sooner we perish, the better.

I am disposable and useless.

At no time in my life have I felt this hopeless and alone.

I have been forced to return to scouring the web to find any information about my chronic conditions and any doctors that may be interested in seeing a 51 yr old with 4 chronic issues and multiple drug resistance genes. No one is interested. Not a single doctor in the Boston area.

You would think I live in Antarctica. No. I live in Boston. Great medical care?  Cutting edge medical care? Bullshit. Not when I actually have to explain to a physician what an :Autonomic Nervous System dysfunction is, and I watch them blink-blink-blink with wide doe-like eyes during my explanation. Are they even listening to me? Or are they just thinking about buying another Berkin bag or the color of their next Bentley.

Angry, arrogant doctors not interested in listening to a patient with tangible and complex conditions? Yes. Boston is their Mecca.  Don’t believe the hype. Listen to the patients that suffer because of their omissions and arrogance.

I am a compliant patient  – but there reaches a point at which it should be (SHOULD be) apparent these “conservative” (seems to be the latest buzz word) treatments aren’t working. I think 17 years should be good enough. No matter how many times I repeat these “conservative” treatments, costing me thousands of dollars, I get no better. In fact, I often get worse. . But that doesn’t matter. The quicker  I get out of their office – out of their sight – the doctors feel as if they can justify their actions – they have done their job. (Yes, I see you looking at the clock and glancing at your watch every few moments. Thanks for the disrespect. If you would take the time to read my file, I wouldn’t have tor repeat myself very single time I see you. If you would communicate with specialists before you refer me, I wouldn’t be wasting their time, boring them with a life story they don’t want to hear.) HOW RUDE.

Thank you, dear physicians,  for hastening the arrival of another cadaver for the next entitled overachiever to pick apart and insult in their gross anatomy classes. 

 

(This is essentially a rehash of a blog written in response to a prompt from the LAST WEGO Challenge – WEGO – we need more NEW PROMPTS and challenges!! I gave you a list of many – but I can come up with more to avoid duplicative entries every few months….)

Day6

A letter to my illness…which one? Take your pick.

Hey Messed Up Body,

What the hell is going on?
We survived a childhood full of sexual, emotional and physical abuse – but FOR WHAT?  Yea, yea, we’ve heard it over and over – “You’re a survivor – look at all you’ve had to deal with.”  (If it was such a big deal then where was the help for ME when I was suffering daily rape between ages 2 to 14, near daily beatings, and cowering in closets and kitchen cabinets with a mon=ther that was too meek to stand up for us and get us out of that situation. Where were the friends and relatives and teachers and social workers and activists for ME and my meek mother? No where to be found. I guess being a plain ol’ white kid make me not worthwhile.

Then I hear about the trauma theories, made popular by Bassel Van Der Kolk – it actually changes the structure of the brain; and trauma is stored in the body. If that’s the case, then where is the help for ME? My brain must be scrambled eggs by now. I’ve reached out to so many agencies so many times, even Dr. Van Der Kolk’s very own agency. What do I get in response? “Call you insurance company – go see a social worker!  Well I have, and look how much good 30 years of counseling with about 10 different “social workers” has done for me – not much, if you ask me. It’s left me bitter, angry and full of hatred towards my self and my sick body.

Wait – is THAT it?

Does complete self-hatred make the body sick, or is the body sick because of all the crap t has been taking for 49 years?

I get why the ulcers at age 11. Makes sense. It was a cry for help.

Just like the self-harming that started around age 10 (see,  I was WAYYYY ahead of the trend!!)

The migraines at age 12  – a response to the stresses of daily trauma or an actual symptom of something physiologically wrong inside my head?

The autoimmune stuff that began to surface, also at age 12 – as I always said to myself – it IS the ultimate form of self-hatred – the body against itself. Then why do I have to literally go into battle with physicians just to ge them run tests to prove that I have some very bizarre autoimmune blood markers?  Why is it that you have made it so that doctors don’t believe me and want to brush me off to the side.

Where is MY Dr. House?

Why is everything you throw at me have to be something that doctors can’t figure out? All you do is pile on the stuff and that just adds insult to injury? WHAt about the pre-cancerous lesions I had on my cervix, oddly at the same time my coworker was experiencing the same thing? I watched her get sliced open, have the doctor tear up her intestines and leave her with a life time of bowel issues, not to mention she was rendered infertile, at age 26. Once again, I had to do a large amount of burdensome research at medical libraries (there as no internet back then) to again show that the standard of care for such things was simple laser ablation, and NOT invasive techniques like my poor co-worker endured. Then shortly thereafter, the mysterious ovarian cyst appeared that I actually had to write a letter to a senator to allow me to get the surgery that again, was the standard of care for such a thing – not a massively invasive 8″ incision the included the removal of my intestines and increased the risk of infection that was being offered to me by the local-yokel doctors.

What is with the genetic malformations in the nerves in my lower back and legs?  Is it just a joke to watch me get disrespected by numerous doctors, surgeons, anesthesiologists, chiropractors and neurologists – to be called a “drug-seeker, ”  to be accused of being out for “secondary gain,” only to finally find a doctor after years and years of MY OWN research that could image these areas and see the anomaly and surgically improve my pain? (Thank you Dr. Filler!)

Then af age 44, I began developing extra lumpy tissue underneath both arms, It was so very painful, and I couldn’t wear normal clothes. I got passed from PCP to NP and finally to a surgeon, who thank God, had seen the condition before – something that affects about 2% of the world population – axillary breast tissue. It was successfully removed and once again I had arm pits, but once again, that surgery wouldn’t have happened without my extensive research into the matter, proving it wasn’t cancer or a “normal” part of my anatomy. Then, 2 years later, my breasts suddenly and painfully begin to grow – 5 additional sizes, and then some. For no reason. MY PCP shrugged, and sent me another PCP, who sent me to se the NP that specialized in “lady parts,” who referred me to a surgeon who them sent me to a breast specialist and another surgeon. In the meantime, I strongly suggested, based upon the research I had found, that I see an endocrinologist. Surprise, surprise – she found a tumor on my pituitary that could be responsible for spewing out all the additional and unnecessary hormones that had been causing my breast to grow – and probably caused the underarm breast tissue to grow as well. In addition to the brain tumor that was found, a lump in my left breast was found a removed – benign, but nonetheless, had I not doe my own research and been proactive enough to insist that see certain doctors, then neither tumor would have been found.

Why is it that I am constantly thrown into the hands of doctors that don’t seem to know the meaning of Continuing Medical Education, or eve feel the need to keep up with the advances in medicine in their fields? ANd to get this poor care in the alleged “Medical Mecca” of Boston MA?  What a complete joke.

The ultimate proof of how much YOU hate me, stupid body, is this Autonomic Nervous System Dysfunction, with the delayed gastric emptying, (which means being hungry and not being able to eat because my digestive system doesn’t work properly). he wildly labile blood pressure, the strange electrophysiology of what is allegedly a “perfect: heart (according to the cardiologists), the sudden syncope followed by hours of immobility and bradycardia, the horribly dry eyes and dry mouth, and  the painful intolerance to cold resulting in livedo reticularis, the severe dry eyes and constant dry mouth. And, of course, the rabid unpredictability of it all.

I call it GPS disease….

                                                                              Livedo reticularisLivedo reticularis

Honestly, this condition is the last straw. I can’t take living like this anymore. My husband can’t handle the issues either – he told me so today. He said he as “done.”

SO, thanks you lousy body, you’ve driven so manypeople away, and now you have destroyed this last relationship of mine as well? Does years of sexual abuse by many people lead to an autonomic nervous system disorder that waits 35 years to reveal itself? If so, why? And why NOW? Isn’t the genetic anomaly stuff in my back and legs, my brutal sleep disorder that makes everything else much worse (Delayed Onset Sleep Phase), the pituitary tumor , the shoulder problems, the totally weird way my body cannibalizes my teeth (resorption), the whacked out way my breast size keeps painfully increasing,  and now the icing on this fallen cake –  my hair is “officially” falling out – telogen effluvium.

(no my head, but a darn close sample)

(noy my head, but a darn close sample)

God dammit Body, why do you hand me problems that require ME to do all this research – and then do battle with my doctors just to figure out what is going on? Honestly, it feels as if YOU are torturing me on purpose. What the heck did I do to you?

I hate you and what you have done to my life, First, you let me be a filthy sex toy for my father, neighbors and later, so-called friends. Then you continue the degradation by afflicting me  with the most bizarre illnesses you could conjure. We are on the same team, in case you haven’t noticed. You have made it so I have nothing left. You have forced me to do time in this bizarre prison camp for crimes I didn’t commit – what more do you want? Unless you are trying to tell me something..that there IS NOTHING to fight for anymore. Because I have nothing left to give. You have taken it all away. The food I give you feel like a waste of time and money. Why I continue to care for you is beyond the scope of my comprehension. If you were a separate entity, you would be jailed, punished and ignored.

Figure this out quick, or else you won’ ave me to torture any longer.

My PCP has officially diagnosed me as a “bonafide medical mystery.” Every disease, disorder, condition or syndrome I have seems to be something not covered in basic medical school classes. All of my life I have had to deal with docs that respond to my requests for help with silence, a couple of blinks, followed by a deer-in-the-headlights stare. I have had to do my own medical research, since I was 18 yrs old, to be properly diagnosed. I don’t know what is more weird – my bizarre body or the fact I have been doing the job of most of my doctors for decades…your thoughts?
-At age 11, I found a lump behind my ear. My mom thought it was some bug that had imbedded itself under my skin during one of my many forays into the great outdoors. Three docs came examined the mystery lump. The first one told me right away, “it’s a cancer – we need to remove it.” The second one had no comment. The third laughed at the the first doc, and proclaimed that it was “just a misplaced lymph node,” and it would swell and recede as all my other lymph nodes did in response to allergies, colds, etc., and it has done so for the last 35+ years.
Thus began the list of my weirdo diagnoses…
– ulcers at age 12 (“impossible!” declared the radiologist that performed my upper GI. I guess not.)
– a “biological false positive” RPR at age 18, discovered only after a kind doctor thought enough to question the initial positive test result and took the time to talk to me, unlike the first doc that told me I had syphillis!! (Through my own research, I learned this false positive is an indicator of autoimmune disorders. This was pre-Internet too, I used BOOKS and JOURNALS!)
– a large ovarian cyst that was made worse by the fact my intestines were wrapped around it. For 2 years, I was told it was constipation, an ectopic pregnancy, and then a hernia. I knew rhere was something very wrong and finally sought a second opinion. Surgery was planned ASAP – to remove a dermoid cyst surrounded by a dangerously thin sac containing 300cc of fluid.
-symptoms of my nonspecific autoimmune disorder (formerly known as lupus) were classified for YEARS as gastritis, allergies, depression/anxiety disorders (I was told on more than one occasion I was making up the symptoms for attention!) until the doctor I was working for at the time put the pieces together and sent me off to the lab for a series of tests that proved I had some form of autoimmune weirdness. I had been vindicated! These test results were my proof that SOMETHING was wrong – and that I had better be taken seriously by medical professional from now on. Or so I thought…this issue is still causing problems for me.

But wait, more weirdness abounds! After 5 surgeries and countless steroid injections for an alleged spinal nerve root problem, caused by what I was told was a ruptured annulus from my 1997 car accident, I sought yet another opinion – from probably my 10th doctor. I knew, based on my knowledge of anatomy and from MY experience with MY pain, that I did NOT have a problem with any spinal nerve. The majority of doctors don’t think beyond the spine which result in many people, just like me, having unnecessary spinal back surgeries. (Check out my 10/9/2012 blog post about new diagnostic recommendations issued by The American College of Radiology in October 2012. Not a single mention of a non-spinal origin of pain was mentioned!) This doctor ordered an MRN, and after successfully arguing with insurance to cover the procedure (since it is just an MRI that is tweaked to image nerves, and is used worldwide as a standard of care for diagnosing peripheral nerve disorders), and I travelled to CA to have the scan. The study revealed that the source of my insidious back and leg pain was due to a genetic anomaly of my sciatic nerve and my piraformis muscle (a relatively rare event). This was surgically corrected by a brilliant neurosurgeon. He also found that several other nerves were involved in the jumble created by the anomaly and accident kinematics, thus correcting a problem I had developed with urinating. A urogyneocologist had told me this was because I had a “defective bladder” and that I must choose between an implanted electronic stimulator(!) or learning how to cath myself so I could pee regularly. Once again, had I not done my own extensive research, think of what I would have had to live with – and the unnecessary damage that would have been done to my body. It sickens me.
It doesn’t end there.
-I had extraneous breast tissue removed that grew UNDER both of my arms (accessory axillary breast tissue, which I was wrongfully told for years was swollen lymph nodes due to underarm shaving. The surgeon I finally saw had seen this condition before – something he told me is only seen in about 2-6% of the population. My PCP have never heard of the condition.
-A few years ago, my breasts suddenly and PAINFULLY grew 5 bra sizes. My skin became oily and my hair started falling out. Since I had my uterus removed in 2007 (yet another folly of misdiagnoses, until I found a doc that solved the problem by taking the infernal thing out!), I had no idea how this issue may have been effecting my periods. Traditional docs don’t run complete hormone profiles, so I was left to languish with the pain and awkwardness, once again, undiagnosed. I independently sought an opinion from an endocrinologist, and tests showed a bizarre (of course) smattering of results, indicating elevated prolactin levels and the potential for Addison’s disease. I was sent for a brain MRI, and a pituitary tumor (!) was found. I was also sent to two different surgeons for breast reduction consults, which then led to a breast ultrasound, and lo and behold – a benign tumor was found! Yes, these things were discovered – but the point is, had I not done my research and gone to see additional doctors on my on, neither abnormal growth would have been discovered. The shocking thing was the possible cause of all this – the medication I had been on for years for my back problems! Usually, men have the hormonal issue with pain medications. Nope, I have to be the oddball, the weirdo, the one that suffers from an issue I once again had to identify on my own. The cause was confirmed by a doctor at Brigham & Women’s hospital, who just happens to be conducting a research study on this very issue – but for men only.
-This past month, I was diagnosed with Autonomic Orthostatic Hypotension. Of course, this was after several ER and doctor visits at which I was, once again, wrongfully diagnosed. I was told I was either dehydrated or having anxiety-mediated syncope. Nope. Turns out that I don’t have simple AOH, if there is such a thing. I have deathly low blood pressures during the day, and uncomfortably high bloods pressures at night. I cannot take the only 2 medications approved for AOH due to this problem. I am currently on the waiting list to see THE specialist in autonomic disorders. Until then, I am pretty much confined to my home, unable to go out without a companion, should I suddenly pass out. Again, had I not done my research, I would not have had the knowledge to advocate for better care for this strange condition – and I learned of a orphan drug that just may help me, along with several other alternatives – not what my doctor had told me at all.

Weird enough for you????

I added a Pinterest board to my existing Pinterest account…I never considered using it for article, but, I guess you can do that. I was using it as most people have been – for images of things they like, want, or want to try to make. During this process I found that Pinterest isn’t that conducive to “pinning” any web pages without pictures/images. Pfffttttttttt. This wold have been done much earlier had they allowed us to do so.

Here is the link to my Pinterest Sciatica, Piriformis and Back Pain Board:

If that doesn’t get you there, just do a search for those words – you will find it. Dancing Spirits – Found on an ad for a local Spiritualist church – if anyone knows the artist’s name, please let me know so that I can give proper credit.

I am a complex patient. I have lots of physical issues. I do not enjoy any part of my intricacies. It makes doctors dread seeing my name on their schedule.
Since I was 6 years old, it was clear that the illnesses I experienced frequently were not typical. I intuitively knew that doctors didn’t like to deal with me because I wasn’t a simple textbook case of anything. At age 12, I was diagnosed with ulcers. I sustained myself on instant mashed potatoes and plain macaroni with butter. Around the same time, a friend of my Mom’s noticed these odd rashes I would get on my face, and how my joints would sometimes be swollen, causing me to walk “gingerly.” A friend of mine from school had diffuse leg pains one day and left school early. It sounded like the kind of pain that my mom always referred to as “growing pains.” My friend returned to school back a month later with a diagnoses of Legg-Perthes.
Why was it that this pretty little girl who only had a few sick days from school, is now suddenly treated as though she is a princess? She got special hours at school – when she went to school. People donated crutches to her so she could get around when her legs hurt.
I was jealous. I had lots of pains too! I was often out sick because I was unable to breathe properly. It was unfair – I had suffered since I was age 5 with all sorts of strange and unexplainable illnesses. No one gave me days off of school. No doctors were going out of their way, running tests, taking x-rays, trying to find out what was wrong with me. It isn’t hard, even as a preteen, to notice that for some reason, my physical problems were just not that important to the doctors. They were not very nice to me when I saw them. Once a doctor told me I probably had cancer…then turned to my mom and laughed.
By the time I was 16, I had amassed a myriad of odd complaints. I was always given the same prescriptions: Afrin, antibiotics, and cases (24 bottles at a time) of Mylanta. I was in college at 16, And since I wasn’t old enough to hang out and drink yet (in the olden days, drinking age was 18), I immersed myself in books, spending all of my time in the medical periodicals and textbooks trying to figure out what was wrong with me. This research paid off when, at age 17, I became engaged. I went to my doc for the mandatory premarital RPR blood test (for syphilis).I was called back in to the doctors office for the results a few days later. Odd, since they gave my soon-to-be-husband his results over the phone. I sat in a room for several hours. No one would see me. Finally, a doctor came in I had never met before and explained what the problem was – my RPR was positive. This meant I had syphilis…UNLESS, he explained, I had something called an “autoimmune disorder.” I lit up, and excitedly related all of my “odd” symptoms no doctor ever cared about before: unilateral joint swelling; facial flushing on one side, not the other; a butterfly-shaped rash on my nose and cheeks, cyclical bouts of stomach distress and nausea…all symptoms I had read about in the medical texts about something called “lupus.” My second RPR thankfully came back as a “biological false positive,” which, at that point in history, was part of the diagnostic criteria for these autoimmune disorders. This doctor changed me – he listened to me, he believed me, he took knowledge I had found through my research, and showed me how it applied to my condition. This experience taught me that if I was to get ANY attention from doctors for my symptoms, I would have to do my own research, and bring this information to doctors so they could then test me for these conditions. And then, I may get the help I need!
Annnnnd, the rest, as they say, is history. I learned how to research medical journals at the local hospital library-it was free! (Keep in mind, this was way, way before the internet, back in the late 70’s and early 80’s.) My interest in medical stuff led me to become a volunteer EMT with IV, defib and trauma certifications. I taught CPR classes to doctors (prerequisite to their required Advanced Cardiac Life Support classes). I taught legal aspects of emergency medicine as part of EMT certification classes. I really should have tried to go to medical school…
Over the years, my self-acquired research skills helped me to get standard-of-care treatment for a large ovarian cyst, when I was only being offered sub-par treatment by the military (I was a military wife); I was able to obtain tests that confirmed I had several autoimmune and blood-clotting abnormalities, even after a “specialist” had labeled me as “just seeking attention;” I successfully and naturally treated my Raynaud’s Syndrome back in the 1980’s with supplements just now getting a plethora of media attention from Dr. Oz and his colleagues (enough to shock my rheumatologist into documenting my successes with his peers); I educated my ophthalmologist about why my vision was consistently changing (a multitude of autoimmune conditions effect the eye – however, the lens of the eye is made of tissue similar to the tissues that swell in joints, therefore, visual disturbance often correlates with cyclical joint swelling.)
I don’t wish to bore you with all of my research endeavors, but I am quite proud of two of my recent successes – the discovery of the cause of a major and painful change in my, ummm, boobs ( I call it my “Dolly Parton Syndrome”). Six doctors didn’t know why, and five of the six literally gave up and offered me no further testing, hope or inquiry. I uncovered the direct cause through a basic Google search. Within 15 minutes, I had several PubMed articles that provided a detailed description of the biological cascade causing my DPS.
In 2004, I found the research of a most intuitive neurosurgeon, Dr. Aaron Filler, whose reseach and developments in peripheral nerve imaging was astonishing – the type of “back and leg” symptoms I had been experiencing since 1997 were Dr. Filler’s speciality. I literally read every one of his research papers over the next few years. In 2009, I underwent one of his neuro imaging studies – the MRN. The results of this study made me so happy – the increasing pain I was experiencing had a visible cause. I wasn’t making it up. It was real. Not only did I have 2 genetic anomalies, but I had atrophied musculature, and four nerves adhered to each other. The sheer elation of being vindicated, even though I had a major physical issue, was an almost unbelievable victory for me. The thousands of dollars spent on many specialty physicians (orthopedic surgeons, physiatrists, neurosurgeons, interventional radiologists, low back pain “specialists” – many of whom were neither helpful nor kind – and the years of pain, the loss of my career…how much better could my life have been had just ONE of these doctors spent some time perusing some online CME activities, or read a peer-reviewed journal in their area of expertise, or did a PubMed search for the constellation of symptoms a young woman in obvious distress presented in their office one day…that is exactly how I found Dr. Filler. And, several others with symptoms like mine have found him incredibly helpful as well. He has made a difference in many lives world-wide.
Why DO I write about my health issues? I want other people to learn the cause of and solutions to their pain and health problems. I want their doctors to be a source of trust, hope and comfort, not the originator of humiliating comments, such as “what you claim to have can be managed with 800mg of ibuprofen,” or being called “immature and emotional” during a procedure involving multiple spinal injections – without the humane administration of mild sedation (protocol at most pain management centers). A patient shouldn’t be paying a physician to be the herald of public accusations of doctor-shopping “to obtain drugs to sell to your friends;” or the author of comments in their medical records accusing them of “attention-seeking.”
I write to educate people to advocate for themselves. If they don’t, no one else is likely to step up and do it for them. I use my real-world experiences to illustrate what is going on in Western medicine. Everything I relate about my experiences with medical professionals is FACT. It has happened to me. It shouldn’t be happening to me – or to anyone else.

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I found this writing the other evening. I wrote it for a newsletter for a company that supposed to be developing a chronic pain website. I don’t know if they ever posted it.

God bless my wonderful husband, Kurt. He is a-maz-ing.

I called it, “Being pain free, just for a moment.”
My husband wakes me up with a kiss on my forehead to say ‘goodbye’ before he leaves for work. He is smiling and asks me how I am feeling. This is the hardest question for me to answer.
My lower back is stiff and painful. My legs refuse to respond to my subconscious directions to move. My feet ache and my lower legs are swollen just enough to make them ache. The back of my neck and upper thoracic areas are on fire. I smile anyway. My mind goes back to something my husband said in the car a few weekends ago. “You know what would make me happy?” he said. “To hear you say that you feel great – not to hear you list off all of your problems and pain – not to hear you dwell on your problems all the time.” But, I can’t lie, and darn it all, I don’t dwell on my medical problems. The cells in my body do that for me. Thus, I am forced to be consciously aware of my pain all of the time, even with diversion. I briefly think about a worst-case scenario: What if something happens to me later on – he would not be able to advocate for me – “Well, she said she felt fine earlier,” he would tell the doctor/ambulance crew. So, do I lie to make my husband happy before he goes off to work, so he can have a good start to his day, or do I honor my body, and tell the truth?
I decide to change the subject – I roll over as carefully as possible, peel myself out of the bed and go to the bathroom, telling him that I’ll be right back. By the time I return, he forgot that he asked that question, and the conversation moves on to dinner, and what we need at the grocery store. So he leaves, thinking I am fine since I didn’t complain, and proceeds through his day with now idea how I struggle.
My husband comes through the door, always grumbling about the stupid drivers he must dodge in order to safely navigate the twenty-six miles from his workplace. I empathize. I used to commute by car too, before I became a medical train wreck. The question is asked again, “how do you feel?” This time subterfuge is easy. I tell him all the things I did; factoids form the silly TV shows I watched, gossip about friends and neighbors. No mention is made about the searing back and leg pain, the stabbing pain still in my neck, alerting me a migraine is just around the corner, or a series of uncontrollable muscle spasms that rendered me unable to drive. I did enough things around the house to make it look like I was busy and actually accomplished something housewife-y – more than watching TV while laying on heating pads, doing stretches to try and loosen my tight muscles that squeeze the nerves that most likely cause my back and leg pain. Or, that I napped for three hours. Of course, the medications that I took to try and maintain some quality-of-life are not mentioned either. Hubby curls up on the couch with his laptop and cruises the net, completely immersed in reading his techno-geek websites. My condition is no longer a concern, or so I think. Then around 8:00p.m. he announces that he has made me a nice warm bath, to help relax my back and legs. Perhaps I will sleep better, he says. Without my verbalizing about the magnitude of my issues, he knows, at least to some degree, how I really feel. I underestimate his ability to perceive my aches and pains. After my bath, I tell him what he wants to hear. “I feel great! Thanks for thinking of me.” It is still a bit of a white lie, but I do feel great – and loved. For a few moments I am pain free, and I smile, for real this time.

Originally written and posted to the former website, “RemedyFind.com” in 2005. To the best of my knowledge, this program is still being used at New England Baptist Hospital.

After exhausting all surgical routes to ease my continued back pain, my surgeon referred me to a physiatrist at New England Baptist Hospital in Boston, MA that is one of the strongest nationwide proponents of the “back boot camp” recovery programs. Since I had seen much about this program on television, and read about it in the local newspapers, I was willing to give it a shot. I was anxious to get back into a “real” gym with the clanking of iron weights, as I was a competitive power lifter in the 1990’s. (And, no, that is NOT what led to my back injury!) I longed for the feeling of the post-workout muscle soreness and to LOOK, once again, like I was a chick that worked out!

Intensive rehabilitation, or “boot camp” programs, are being prescribed more frequently as therapy for back pain and other back conditions instead of the standard “take-it-easy” technique. The theory behind this approach is that aggressive exercise will help patients overcome fears about lifting and moving about in daily life. The program challenges muscles each session to the point of failure – this is how strength is gained. Strengthening the muscles around the injury can compensate for the injury in many cases.

A therapy “session” usually starts with 20 to 30 minutes of aerobic activity, followed by one hour of supervised weight-training exercises on Cybex-type machines that isolate back, hamstring and gluteus muscles, and finally a half-hour of stretching. In some clinics, participants lift milk crates containing steel bricks to simulate lifting objects in and out of car trunks and loading and unloading the dishwasher. Participants attend one to two sessions per week for one to two months.

These programs have gained lots of attention recently, and have been featured on local and national television stations and in several respected magazines: Health (2004); Alternative Medicine (Nov/Dec 2004); The New Yorker (April 8, 2002); Forbes (2004); Health Journal; and, The Saturday Evening Post (Jan/Feb 2005).

Eighty-five percent of people experience back pain at some time in their life. When back pain becomes so severe that daily tasks like taking out the garbage or doing the laundry are unbearably painful, most people seek medical attention. When this type of pain reoccurs over several months, usually these people begin to worry if they will need surgery. Out of all the people who seek medical attention, about 15 percent fit this profile. These are the people most likely to benefit from boot-camp therapy.

When you think about it, the less you move, the more your muscles atrophy. The more atrophy you experience, the less support your bones have and the less strength you have, the weaker you will be, and the more prone you will be to re-injury and more pain. It is a vicious cycle, so working out to preserve muscle mass does make sense. Learning that you CAN move about safely and that not all pain means injury is a good thing. This is what I learned from my participation in the boot-camp program. I also regained my strong back muscles that I had before my four surgeries. I can now unload my dishwasher without sitting on the floor, and climb a flight of stairs without holding on to the rail. It doesn’t sound like much, but to me, it is a huge accomplishment. I now know I can go back to the gym and slowly begin to lift weights in a safe manner. I will never be what I was before my surgeries, but I am no longer “taking-it-easy.” I am proof that back “boot camp” rehabilitation programs can help individuals regain strength in their back muscles, which in the end can help people to regain strength in their daily lives.

I must emphasize that these programs are NOT for everyone. Do NOT attempt to create your own “boot camp” program without seeing a doctor or therapist that is specifically trained in intensive rehabilitation. Only about 10 percent of the doctors in the United States currently feel that this treatment is beneficial (2005 statistics). Below are a few of the U.S. clinics that are known to endorse and prescribe intensive rehabilitation or back “boot-camp” programs:

New England Baptist Hospital’s Spine Center Boston, MA

Physician’s Neck and Back Clinic Minneapolis, MN

Texas Back Institute Plano, TX

CAVEAT: However, my story does not end as I cartwheel off into the sunset, pain-free. During one session, I was pushed by one of therapists to use more weight in a certain exercise than I felt comfortable using. I mentioned this to the therapist and was told to “not be so scared.” [As a former professional power lifter and a personal trainer for 10 years, I am acutely aware of the nuances of my body, and which twinges of pain mean “hey, something is wrong,” and which ones mean, “Stop, you fool! That is not a good idea!” ] So, I proceeded with the exercise and feel a ripping sensation down the inside back of my leg and up into my ‘nether regions.’ I had NEVER had any type of pain there before. I was unable to complete the aerobics class that day, and limped home to apply ice and my trusty Tiger Balm patch. Although the initial pain settled down after about a week, ever since that day, I had difficulty urinating. It was painful, and I couldn’t use the usual mechanisms to start and stop the flow. An average trip to pee now took 10 minutes to painfully coax the urine out of the bladder. On top of the discomfort and pain, my bladder never felt empty. I contacted the physiatrist – who told me to take an Advil and ignore the pain and continue therapy. I went one more time and was treated as if I was making up the whole scenario. I was told by one trainer that I was trying to “sidestep efforts to make myself better.” Yeah, that’s right. Me, a former gym rat, trying anything I can to not touch a weight ever again and become a couch potato (NOT). It would be nice if these trainers actually took the time to learn who their patients were.

A year later, I saw a urogynocologist that specialiszes in femal bladder issues. I was told that one of my nerves in the “nether regions” had been “compromised” in some way and recommended surgery to implant a Medtronic InterStim® Neurostimulator so that I could go potty like a normal human being. After much research, I decided to forgo this pee-pee pacemaker and continue on my quest to find a doctor that would listen to me and take my symptoms seriously.

I had recently located a neurosurgeon on the internet that had developed a way to image peripheral nerves by tweaking the settings on an MRI. His process is called an MRN – for Magnetic Resonance Neurography – and he was able to see peripheral nerves that often caused all the symptoms I was experiencing. There were actually other patients out in the world with histories similar to mine. His studies and experience had demonstrated that not all back and leg pain originates from the spinal nerve root and not all back pain needs to be addressed by multiple spinal surgeries. The problem was that he was in California – of course – and that even though he was educated at Harvard, and other medical schools, only Europe and the West Coast had embraced his studies, despite them appearing in several well-respected peer-reviewed medical journals. I did not know that in 6 years, I would have the honor of being operated on by this brilliant man, who validated the MRN that clearly showed that my problem was NOT spinal in nature, but in 4 peripheral nerves that were tangled in atrophied and hardened muscle tissue and scar tissue. (More details will follow in another post.)

Although I had a negative experience 5 weeks into the program, it was not a total waste of time and effort. Several of my co-sufferers did quite well without any setbacks. There were three other people in my group (there were approximately 20 of us) that had similar experiences to mine, although I do not know any of the details of their incidents. I still would recommend this program to anyone with a clearly diagnosed problem (unlike mine) that would benefit from strengthening the supportive musculature around the injured area, as well as the core muscles (abdomen, primarily). As a former personal trainer, I know the importance of having strength in these areas and work to maintain this strength on a regular basis.