Category Archives: Survivors’ Stories

Survivors are invited to tell their Arachnoiditis Stories here. #arachnoiditisSurvivor #artforarachnoiditis

MY JOURNEY INTO ADHESIVE ARACHNOIDITIS ~ KIMBERLY COMFORT

 

Digital Collage
Digital Collage

Kimberly is the next Arachnoiditis Survivor Portrait Project recipient.  Fighting and surviving medical harm and back pain her entire adult life, she shares her story with us to increase awareness and prevention efforts.

“Okay, I wish it was a short story, but it is not.

 

At age 13, I started on the first day of school with severe hip pain,.  My Mom picked me up and we went to the military clinic. They took about ten X-rays and said nothing was wrong. We went back every day for about a week. Then we gave up and went on to Andrews AFB, where they said it was in my head from moving to a new school. I was told I was fat and needed to exercise a lot.

 

We then switched to Bethesda Naval Hospital and, still for three more months, multiple X-rays and all types of daily PT including electro acupuncture, biofeedback and self-hypnosis.  They still found nothing wrong.

 

 At the fifth month my Dad was being dropped off at the top of the street and saw me three blocks away crying, sitting on a protector on the road for cars. He came down to me. I lived a football field away from school, and I was still three blocks from home.  It had taken me two hours to get that far. At that point, Dad knew there could be no fooling around, waiting for answers. He contacted an old neighbor from the last state we lived in,  who was a pathologist.  That neighbor provided a referral to the DuPont Institute for Adolescent Orthopedics. That lit a fire under Bethesda Naval Hospital. They didn’t want to let me out of the military system, so they agreed to put me in the hospital the next week for a thorough checkout. I was now 14 and it had been six months of wrong diagnoses. 

 

Within three days after multiple tests, they performed a myelogram. The myelogram showed a large ruptured disc at L3-L4. The doctor came in and told me they would put me on the surgery schedule and that she was headed off to a meeting. About a half hour later, I was being rushed to emergency surgery with a central rupture at L4-L5 cutting into the leg nerve clumps. Whatever they hit during the surgery made me jump a foot off the table.  I was then non-stop screaming until they got an IV hooked into me and got pain meds on board. They say the surgery was packed because they were expecting a large tumor. Once they realized it was just discs, they all left. They wouldn’t fuse because they felt I was still growing.


I had a re-herniation 8 months later. In 1981 at age 16, I was fused from L3-L5 with iliac crest.

 

In 1983, I had a bulging and frank herniation of nucleus pulpous.

 

In 1991, my back started “clunking” with every step.  I had to have a psoas muscle release to prove that it was my back that was making the noise and not an overly taut psoas muscle. From that point on, I have had to lift my leg into the car as the released psoas muscle was now too long. And the clunking continued.  In November 1991, I had an epidural steroid injection (ESI), which didn’t help at all. Also in this time period I had facet joint injections which also failed to reduce my pain. 

 

By the time my Dad retired from his first career as an Air Force officer in 1986, I had a 2+ inch thick stack of X-rays.  For every good X-ray, they took 3 bad ones. By the time I was 16, I was warned if I ever had a child I would need genetic testing and 9 months in bed. So, by that time I knew I would not have a child.  In December 1991, I had L2-L3 fusion continuation along with disc removal by the head of Georgetown University Orthopedic Clinic, Sam Wiesel, MD. As he rarely did, he jointly performed the surgery with a renowned neurosurgeon, Dr. Arthur Kobrine, who operated on President Reagan’s Press Secretary, James Brady, after the assassination attempt. When Dr. Kobrine saw me, he said my spinal cord was too small for my body (not the only part I have been told is too small- very weird) and that it was severely tethered.


The surgery they did together kept me in okay condition until 2010. I survived on Darvocet N-100, taking 2-5 daily.  I saw that Darvocet as my lifeline.  Who knew how much more I could and would endure.


Starting in 2006, after being the family’s caretaker for an 84 year-old (my father’s mother), an 85 year-old (my mother’s father), a 94 year-old (my mother’s aunt) and a 96-year old (my mother’s mother), I decided to get as healthy as I could for me.  I knew I would never meet anyone and get married. I knew my next role in life was to be the caretaker of my parents, now in their low 70’s. To get fit, the whole family walked to the beach and back every morning around 10 am.  Then I came home and did Wii EA Active and Wii Dancing for 2 more hours. I did this regimen 7 days a week. No, my back wasn’t a fan, but I was determined to be fit.

 

I knew from experience that losing weight by exercising increased pain.  My family PCP couldn’t get that. He had the message that the less weight you carry around, the less pain you were in. For me, it was the opposite, since I was losing weight by exercising more.  To counter the increased pain, I increased my pain pills, Darvocet, daily by 1-2 more.  My PCP wanted me to go to PT to see if we could drop the pain meds back by one.
I went to the intake appointment, walking the stairs, climbing slants, doing squats.  At the end of the session, he had me try one exercise he wanted to start me on. I did the rep and left. By the time I reached the car, I told my Dad I was in the most severe pain I had ever been in. I immediately took two Balacet, and Dad drove home. Upon arriving home, 45 min later, I took two 10/325 Percocet and 10mg Valium. Nothing was touching this pain, although I continued taking Percocet and Valium every 3-4 hours. Like an idiot, I went back to this PT the next day, having had no sleep.  I told him that the exercise he had me perform had caused, and was still causing, great pain. Nonetheless, he had me do 25 minutes of exercise. The last exercise was to be sitting on the exercise ball (something I often used as a seat when company came over and we were short on seating), sliding a foot out and then back in.  Now I was in tears both physically and emotionally as I couldn’t balance.  He had to hold me, and I couldn’t budge my legs.  I left again.

 

The next day I had an emergency appointment with my PCP because I could not budge either leg standing up. I could only walk in an ape position of bent knees, leaning forward. This was now September 16, 2010.  My doctor increased my meds to a Fentanyl patch along with Percocet and Valium. Still little help, but I slept in spurts.  My PCP also said to take a week off then get back to walking.
After the week off, I returned to my normal 2-mile walk.  But, now I could only walk in my gorilla position. Toward the end of the week, my father left me with my mother at a bench and ran home for the wheelchair.  From about 26 October, I walked until I fell back into the wheel chair.  I continued doing this for shorter and shorter distances until mid December.  In mid-December, I went to Orlando to see an orthopedic surgeon my Mom had seen. He performed an X-ray, informing me that I had flat back syndrome.  As a result, he stated that I certainly had pain and always would. He sent me for MRIs the next day. That Friday I saw him again. My back was so bad I got trapped in the lady’s room at his office as the door was too heavy for me to move.  He sent me for a “warm and form” brace for my lower back.  He then arranged for another orthopedic surgeon in his practice, specializing in physiatry, to do an ESI on me that day. This physician had previously done three shots to my Mom in a hospital setting, so that is what I was expecting.  At the time, I knew nothing of the controversy of ESIs. 

 

When I showed up at his office (on a Friday), I realized it was now a cash factory. I was told to put a gown on. As opposed to Mom, who had twilight in a hospital setting with an anesthesiologist, he just started in. He numbed the skin, and stuck in the needle. I jumped a good six inches up from the table. He yelled at me to be still as he is close to my spine. I was biting the pillow in pain with tears soaking the pillow. When he was done, he left as did the nurse who told me to see myself out. I struggled to crawl to the door, where I budged the door open and cried out for my Dad for help. He dragged me to the car. 

 

When we arrived home, Dad had to get the wheelchair as I could not walk at all.
By Monday, I was unable to void. Dad sent a fax boldly marked “Urgent” early Monday morning to the Orlando doctors – which went ignored. By late afternoon, Dad put me in the car, and Mom drove us all to the emergency department at Mayo Clinic Hospital in Jacksonville.


Mayo performed an MRI in the ED to rule out cauda equina syndrome. They said the fact I could stand and shuffle my feet bent over confirmed that I didn’t have CES.  They apparently could care less that I could barely shuffle my feet, leaning forward with bent knees. They were sending me home. It wasn’t until Dad kept insisting I could not void that they scanned my bladder. Then they cathed me, and they admitted me. They sent me home on day three, with a Foley cath bag attached to my leg, and with no diagnosis. This was Christmas week, and they appeared anxious to clear out inpatients. 

 

I followed up at Mayo with neurology and urology clinic appointments.  Dad sent the neurologist a detailed paper explaining my experience in preparation for my appointment. When we got to the appointment, it quickly became clear that this neurologist had decided that my pain and inability to walk or void was in my head – the result of my use of Darvocet for many years, and now of Percocet.  He conducted a brief examination. Then he had me walk down the hall.  By this time, I could walk about ten feet, bent over facing the ground.  He decided he could shock it out of me. He grabbed my hand and took off at a full pace.   Within the first stride, I was tripping onto the floor being dragged five feet by the doctor.

 

He then said for me to come in for a walking EMG the next day. He never had me walk, he just had me stand.  It seemed that he was more interested in showing off his equipment to a colleague than he was in thoroughly examining me.  When the appointment finished, I told the doctor that I’d see him in a day or two. He did not answer. I left and started crying.  My Dad said I was being foolish when I told him that the neurologist was dumping me. It turned out I was right.   He had arranged for me to see a psychologist that afternoon.  He had given to the psychologist the task of informing me that my entire condition – inability to walk, severe pain, inability to void –  was due to my years of daily Darvocet.

 

They wanted me to go to Mayo Clinic at Rochester, MN, to an outpatient pain rehab clinic. This concept made absolutely no sense to me.  Upon arrival, they would take away all opioids.  During the day, they would have me in their pain rehab clinic.  But, at night, where my experience informed me that my pain would be at its worst, I would be left to the care of my parents in our hotel room.  I envisioned that I would walk in front of a bus in such a setting.


In Daytona Beach, despite visits to a multitude of doctors, I found no one who was interested in pursuing a diagnosis.  Instead, I found only a multitude of specialists who would tell me “Good news.  I don’t see anything wrong.  Good luck.”  My PCP remained empathetic, and, thankfully, he continued to prescribe sufficient opioids that I could continue to exist, although at night, I was often crying out in pain.

 

 I only had my Dad for research. Luckily his second career was as an analyst. He spent every day trying to get help from the internet. His research suggested that I might be suffering from a peripheral pain condition, perhaps piriformis syndrome.  He spent $90,000+ to bring me to California to be seen by a neurosurgeon specializing in piriformis syndrome.  He performed a bilateral Piriformis resection at Cedars-Sinai Medical Center. The piriformis muscle was resection, the piriformis nerve was cut, and the piriformis muscle was left to wither in my body. After three months recovery in CA, I left in worse condition than when I arrived. I was back to total wheelchair. At my last check up, my Dad asked this doctor if I might be suffering from adhesive arachnoiditis. The neurosurgeon went into his office to re-examine my MRI.   He then told my Dad that there were signs of unusual clumping of nerves, but that would indeed be a bad [unfavorable] diagnosis.


Near the end of the CA recovery, on the web, my Dad found a spinal specialist at the Steadman Clinic in CO, where major athletes go to for treatment. Dad asked him about the possibility of adhesive arachnoiditis.  This orthopedic surgeon said he could suggest 40 other diagnoses before he would consider adhesive arachnoiditis.   This doctor seemed truly interested.  He exchanged several e-mails with my Dad, inviting us to see him in CO.


I went to see him at the Steadman Clinic in Vail, CO.  After his PA spent about 1.5 hours thoroughly working me up, the doctor then spent about 45 minutes with me. He had me undergo a couple of MRIs using Steadman’s 3T MRI machine.  He then showed us that rather than the normal lumbar lordosis, my spine had developed a lumbar kyphosis, i.e., my lumbar spine had developed wrong curvature as a consequence of my early fusions and flat back syndrome. He proposed a very major surgery, a so-called pedicle subtraction osteotomy. I had to undergo psych counseling and testing to get the surgery.  In this surgery, the surgeon cut out a wedge from L4,  pulled my spine back like a rack of lamb. My spine was then held in this position by curved titanium rods secured by screws into the L2, L3, L5, and S1 vertebrae.  You can view a pedicle subtraction osteotomy surgery on YouTube.


After surgery, I thought he had fixed me.   After the surgery, I was discharged to two weeks therapy at an inpatient rehabilitation hospital in Aurora, CO, where I started walking better.


Upon return to our home in FL, I attempted to continue therapy with a PT.  However, the PT did not appear to follow the doctor’s prescription of going very slowly. The first PT tore both hip labrums by performing an aggressive “piriformis stretch,” despite having been informed that I did not have a functioning piriformis muscle.  Subsequently, a leading hip surgeon has told me that he would not attempt labrum repair surgery because I can barely walk anyways. A second PT said I could be healed with only five exercises, as they heal everyone, which made me think he was crazy.

 

I returned to CO and the Steadman Clinic for PT. I was there from June until September 2013.  When I left, I walked with a cane, 30 minutes twice a day, and I did 30 min PT twice a day. I was supposed to continue in FL, very slowly, and use the Pilates reformer more and more. Between mid September and November, my condition slid all the way back down, plus my thoracic and cervical pain greatly increased.

 

In May 2014, I again returned to CO to see my spine surgeon. After a CT scan, he told me that he saw nothing to correct surgically.  He set me up for trials for a spinal cord stimulator. I saw a world-recognized SCS specialist, Dr. Barolat. After viewing the CT scan, he walked in and said that there was no way a SCS would help my lumbar pain, but he thought a peripheral nerve stimulator (PNS) could help my thoracic and lumbar pain. He did the PNS trial.   He had me stop PT with my CO therapist while I underwent the trial. At the end of the trial my pain meds were less, suggesting that the PNS was helping, but only in the thoracic part of the spine. It didn’t touch the pain in the lumbarsacral area where most of my pain was, so he ordered a trial of a lumbar SCS conducted by a local anesthesiologist. That doctor emplaced the lumbar SCS trial on Friday. It was supposed to be a 5-7 day trial. But they so overset the SCS intensity in the recovery room that I had to keep the SCS turned off until Monday afternoon when I could see the SCS tech again.  Then, on Wednesday they removed it – effectively a two day trial.  Once again it seemed like my pain pill use diminished during this trial, but once again I recognize in retrospect that for this SCS trial I had again stopped PT.


In any case, I had a combination SCS/PNS installed by Dr. Barolat on 9 September 2013. After recovery from the surgery and my one-month follow-up appointment, I returned to FL.  The SCS/PNS was not helping my pain.  I met with the SCS manufacturer techs a couple more times while they attempted to better tune it.  Eventually, I had to accept that it wasn’t helping.  In retrospect, the apparent decrease in pain during the trials was due to my stopping PT and not an effect of the SCS/PNS. I permanently turned off the SCS/PNS in early January 2015.


The final weekend of January 2015, I flew to California with my Dad to see a recognized specialist in the care of intractable pain patients, Forest Tennant, MD.  He very quickly concluded I had adhesive arachnoiditis based upon my history and my symptoms. He saw me for about 20 hours over the four day weekend. He put me on hormones as I tested to have lost most key hormones from the adrenal gland working overtime. He normally tries to reduce opioid medication on intractable pain patients, but with how bad my case was, he added liquid morphine sulfate to my OxyContin and 10/325 Percocet regimen. He told me to take as needed to stay ahead of the pain. He also did a few genetic tests. When I was back in FL, he sent a letter to me and to my PCP explaining to be prepared to put me on injectable pain medication as the tests show that I am a rapid metabolizer, up to 200% too fast. Also he told us to avoid anti-depressants, as I am a slow metabolizer, up to 200% slower.  Dr. Tennant provided a written report to my PCP citing my diagnosis as “Intractable, centralized pain secondary to severe arachnoiditis complicated by bowel and bladder dysfunction.”


In March 2015, Dr. J. Antonio Aldrete of the Arachnoiditis Foundation reviewed my history, my symptoms, and my most recent MRIs. He did not see arachnoiditis in my 2008 lumbar MRI, but in both the 2010 and 2011 MRIs, he sees arachnoiditis in several locations.  He provided a detailed written report for my PCP and us, citing adhesive arachnoiditis as the primary diagnosis.

 

I then again contacted my Steadman clinic ortho surgeon.  I provided to him Dr. Aldrete’s detailed report wherein he reviews my Nov 2011 MRI on a frame by frame basis, finding adhesive arachnoiditis.  I don’t know if the Steadman surgeon went through Dr. Aldrete’s report or the MRI in a similar frame-by-frame basis.  All I know is that he continues to tell me that he does not see arachnoiditis in that MRI.  It’s enough to drive one to drink – if I weren’t on opioids. 

 

I can’t sit, I have had to reduce my walking from 30 min once a day down to 18 minutes, and still the pain is getting worse. I spend 23+ hours lying down. I can dress myself.  I can only walk with a four-wheeled walker (aka as a rollator) as I have severely damaged balance. I have stomach issues due to narcotic bowel. This is my entire life. There is no quality. Currently, my father is donating all the equipment for all of my activities I used to do, stained glass, sewing and scrap booking and more. I have bought way to much yarn hoping I might be able to knit or crochet. I hate my quality of life.

 

I am however trying to follow a French doctor’s protocol which lasts three years. She has conducted research into treating radiation-induced breast fibrosis.  She has conducted some peer-reviewed studies showing a significant reduction in breast scar tissue by following a protocol of pentoxifyline in combination with Vitamin E.  In addition, she has authored a case-study of a severely incapacitated, bedridden man due to epidural fibrosis.   Following a couple of years of the pentoxifyline/Vitamin E protocol, his symptoms went away and the fibrosis was shrunk.   Dad met a young woman’s mother online who had adhesive arachnoiditis. The only relief she got was in a pool. After three years on the protocol, she has improved enough to return to college.  The French doctor has written to us.  She is concerned that the protocol may not help me since my original scar tissue goes back many years.  But, my current debilitating condition only goes back to 2010, so I still have some hope for the protocol. I have promised to do the full three years of the protocol, and I am only seven months into it.

 

Beyond that, I don’t offer any promises.

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Together We Change Tomorrow ~ Karen’s Survivor Story

Together We Fight to Change Tomorrow.
Together We Fight to Change Tomorrow.
Together We Fight to Change Tomorrow #2
Together We Fight to Change Tomorrow #2

Life With Arachnoiditis Co-founder, Karen Kovacik Early, believes Life With Arachnoiditis must be approached with an attitude of hope. She knows, first-hand, that it is a daily struggle and that some days are easier than others. When I first discovered I had arachnoiditis, Karen, a complete stranger to me at the time, was one of the few people who took the time to help me figure out what was happening, and more importantly, helped me to find the courage to discover my own way to have a Life with arachnoiditis stabbing its way right through the center. Because living is truly about so much more than survival, I will be eternally thankful for her support, assistance, and guidance during that very difficult time.

This is her Arachnoiditis Survivor Story as posted on the Life With Arachnoiditis Website.

Shared here with her generous and open-minded consent; she is the next recipient of

Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm in America.

I am looking forward to doing her portrait. ~slk

 _____________________________________________________________________________________________

Hi there! I’m Karen. Friends call me KK, Smiley, Curly, Dances with Deer and now Dances with Wahoo!  My claim to fame is my sense of humor even in the face of uncertainties. After all, isn’t life uncertain? Isn’t every day a gift? Isn’t that why today is called the “present” … because it is a “gift?”  I’ve been up, down, and I’ve been blessed beyond measure as I have touched the face of this illness many times escaping relatively unharmed.  I have hope and faith in knowing we will find answers for those suffering much worse than I have ever been.

Let me be brief with my history.  At age 12, I had a serious car accident in which I was thrown through the windshield and back into the car. Transfused with 32 (yes, 32) units of blood and suffered a cardiac arrest. In the 60’s, people did not live through that level of trauma.  I was blessed. At age 21, I had my first spinal fusion: L4-L5-S1 and did great until a car accident in 1980. They found broken rods in 1981 and they fused L4-L5-S1 and removed instrumentation. That surgery was not successful, however, I thrived through 23 years running 5K’s, jogging daily, swimming and being as active as possible until November 2003. Let me also add I had an undiagnosed neck fracture resulting in severe spinal stenosis at C5-C6 which was repaired in 2001, coming out of surgery with less pain than when I went into surgery. In November 2003, I developed CES (cauda equina syndrome) and had emergency surgery on a Saturday. Surgery lasted 6.5 hours when it was anticipated it would take 3 hours. They found a real mess. L3-L4-L5-S1 was cleaned up with my surgeon carefully removing scar tissue scattered throughout my spinal canal with bone fragments encapsulated inside. He then fused and inserted 2 state-of-the-art spacers plus instrumented with rods and screws from L3-S1. I recovered beautifully although I had to learn to walk unaided and learn to balance again which I did from the morning following surgery. In June 2006, I fell down a flight of stairs without realizing I was injured. By October 2006, I was experiencing another round of more serious CES.  In November 2006, I underwent a fusion revision adding L2 to L3-L4-L5-S1. Another spacer was added at L2-3. L2 to S1 was reinstrumented with new rods leaving screws intact from L3-S1 adding new screws at L2. It was during this time we believe a nick in the dura may have occurred causing arachnoiditis, and/or exacerbating, existing arachnoiditis. Let me give credit where it is due: my CES was twice successfully resolved by my highly skilled surgeon, George Frey, MD, Colorado Comprehensive Spine Institute.

Some months following the last surgery, there seemed to be no diagnosis found for new pain and neurological issues. I had a sense there was more to the situation and sought out another opinion on my own across the state at Durango Spine. Lance Hamlin, PA to Dr. Youssef, identified the arachnoiditis in under 2 minutes of MRI review and explained it to me. At that time, a spinal stimulator was mentioned as a possible option. Instead, I opted for physical therapy which helped immensely. Then I started researching in an effort to find answers. Since November 2008 I have been in experimental treatment which is proving to be highly successful for me. It is my firm belief my arachnoiditis is not progressing. It is anticipated that I will remain in treatment indefinitely. MRI follow up is planned to be able to quantitatively document my progress sometime around the three year mark.

A natural approach to my Arachnoiditis continues. My progress from November 2008 to present is nothing short of a miracle.  My current IV therapy is not a formal clinical trial rather a natural approach to treatment overseen by my physician/researcher (an ACAM provider and integrative medicine physician). I do NOT recommend anyone attempt to duplicate this therapy without the guidance of your doctor.  I’m the first one to admit some of our efforts have made me ill while other efforts have been stellar performers.

I’ve learned the “impossible just takes longer!”  With all my heart, I hope we are going to be able to “document” a reduction in the inflammatory disease process we believe may be involved with Arachnoiditis.

 My natural therapy began November 2008 when I was in extreme pain and having difficulty walking and balancing. June 2009 I was able to  walk 4.4 miles four to six times a week. Other activities include mountain biking, snow skiing, whitewater paddling, snorkeling, fishing, hiking, swimming, boating, and more. I traveled to the Mexico beach in February 2009 and spent most of April 2009 in South Florida and the Florida Keys, fishing and snorkeling. My pain level is decreasing every day. Leg and nerve pain is almost non existent and my back no longer aches every second. My regularly scheduled pain medications were reduced to ZERO as of May 25, 2009.  I am having the time of my life.

My IV therapy consists of high dose vitamin C and magnesium given intravenously ideally at least once a week. We are detoxifying with high dose vitamin E, high dose cholecalciferol (vitamin D3), high dose omega-3-acid ethyl esters and Nattokinase. There are other items included in my treatment which seem helpful. We would hope to be able to demonstrate reduction of the scar tissue within a few years via high resolution MRI. 

For those of you suffering from Arachnoiditis, may I suggest as mandatory reading:  Anatomy of an Illness by Norman Cousins.  There is a significant psychological component to health and wellness.  Norman Cousins outlines his true story written after his diagnosis with an incurable terminal illness.  Mr. Cousins was able to return himself to an acceptable quality of life utilizing high dose vitamin C therapy, laughter and faith. Each of us has a duty to utilize faith in an effort to improve our own situation. I believe faith is involved with the placebo effect that has been measured in past medical studies. You MUST read Mr. Cousins’ book …. the foundation of my fight for life was formulated from this book.

Please also refer to the study online published by the British Journal of Radiology found at http://bjr.birjournals.org/cgi/content/full/77/922/885 for a very enlightening study on epidural fibrosis.

My surgical history for your reference:
1974 – Fusion L4-S1 with Harrington Rods & bone graft
1981 – Broken rods, refuse L4-S1, remove rods, (failed)
03/01 – Fusion C5/6, titanium plate, bone graft
11-03 – Fusion L3-S1, rods, bone graft & allograft, 2 spacers (CES symptoms, emergency surgery)11/06 – Fusion L2-S1, rods, allograft, additional spacer, new rods/old screws (CES symptoms)
06/08 – Recurring CES, hospitalization, countless MRI’s, CT scans, more.
09-10/08 – Arachnoiditis L3/L5 diagnosed by different provider, self referred (turns out MRI records review shows scarring present as early as the middle of 2006, so diagnosis was a long time in coming)
11/08 – Started experimental therapy including IV therapy, nattokinnase, omega 3, more
03/10 – New impingement at C3/4 and C4/5

Under no circumstances should anyone interpret my story as medical advice nor employ any attempts at this therapy without a doctor supervisionMy very experimental therapy, as outlined above, is not detailed in an attempt to prevent anyone from attempting treatment without a professional. Should you desire more information, please have your physician email me and I will be happy to refer your doctor to my doctor. 

Again, my love to you all. I am here for you. I do not represent my treatment as a cure for you … it has worked for me. Karen – Email kkovacik12@netzero.com 

This is “My Journey” This write up is not medical advice nor does it represent any endorsement by LWA.  Information represents my “personal journey” and is written in hopes of encouraging you to seek out ALL avenues of treatment.  

My Decision to “Stand up and FIGHT” – Prior to diagnosis I was experiencing CES symptoms, nerve pain and a host of other symptoms. When diagnosed in 2008, I was devastated. Then I decided, ” I’m not a quitter. I’m going to STAND UP AND FIGHT!”   I decided to pull out all the stops and fight like I’ve never fought before.  **Attitude is everything**

January 2009-June 2009: January 2009, I was still taking 300+ mg Demerol a day. As of May 25, 2009, my Demerol intake is zero. January 2009, I took 30mg-60mg diazepam per day. As of June 5, 2009, I do not take diazepam (dalium was prescribed daily from 1997 for severe muscle spasms).  January 2009-March 2009 I was able to go snow skiing, hiking, fishing, snorkeling, boating, beachcombing and traveling. June 18, 2009 I achieved my goal of walking 6.0 miles WITHOUT pain medication. Nerve pain has gone from 24/7 to a few times a month. I rarely have serious pain. This sounds outrageous, but it is my path. I am healthier than many 30 year olds. I am 57 years old and I have Arachnoiditis.

August 2009: I remain free of narcotics and diazepam. Nights are still tough and I have insomnia generated by diazepam withdrawal (diazepam withdrawal is difficult and quite prolonged). I found reducing my hikes from 6 miles to 4.4 miles allows for more hikes. July 2009, I paddled class IV whitewater and paddled a 4 day 75-mile kayak trip on the Green River in Utah sleeping on the river banks for 3 nights! I also flew to Florida for my high school reunion to celebrate with friends.  
November  2009 (3rd patient has IV therapy): I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising. I am narcotics free over 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. For a few months now I have had twice weekly IV therapy. Ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water. Almost all leg nerve pain is gone … most of the time.  It kicks up when I go skiing.  I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart!. The past few weeks I have crawled into bed at night without pain creeping in after a few minutes. I am so thankful and so very humbled by the progress we’ve made. 

January 2010: I am still able to work and play without pain medication. Still taking 3000mg Robaxin per day. I’m also using valerian root for muscle spasms and taking GABA supplements now. The Patricia Kane Protocol was absolutely helpful to me. I’ve found I cannot receive both ascorbic acid/magnesium and the Patricia Kane Protocol the same day. I need at least a day or two between the treatments. 

February 2010 (4th patient has IV therapy): This journey has taken me places I never dreamed I would be. Patients from all walks of life have contacted me from all over the world. New friends and new challenges lie ahead. Dear new friendships have been made and I would not have missed these new friends for the world.   I’ve been able to meet four patients with Arachnoiditis.

March 2010 (5th patient has IV therapy): An MRI this month revealed some significant impingement at C3/4-C4/5, just above C5/6 fusion done around 2000/2001. I was able to see Lance Hamlin at Spine Colorado in Durango and he is as awesome as ever! I’ve started physical therapy and traction at home in an effort to strengthen my neck. Worst case scenario will be surgery at C3/4-C4/5 which I am going to work to avoid at all costs.  Pain medication was required at initial onset for 2 days and has been required several times for extreme pain. I am still battling neck and arm pain as of March 18, 2010 but I appear to be making progress. I’ve just completed a 5 mile hike today and it is my 5th hike this week.

IV therapy continues and remains the mainstay of my treatment. A new patient has again come on board and also had great initial results to two initial treatments. Connie Keeler in Tennessee remains improved and follows a similar course. It’s a long road and there are no “cures,” but remission/improvement seems attainable.  This is excellent news.  

April 23, 2010: I continue to battle neck issues although the pain is not nearly as severe as in March. Spine Colorado (Durango) continues to track my progress in three week intervals. I am very pleased with Lance Hamlin, the PA at Spine Colorado.  If surgery is the ultimate route, I remain confident I will get excellent care. We realize surgery is one of the worst possible risks with Arachnoiditis. Surgery will be considered only after all other options are exhausted. Intermittent pain medication has been used for the neck injury issues (a few times a week) with less than satisfactory results.

This month I traveled to Islamorada in the Florida Keys to visit friends. It required me to miss IV therapy and I went two weeks between IV’s. By the tenth day I was starting to experience pain from Arachnoiditis (I did not take my liposomal vitamin C and glutathione with me as I did in the prior trip). Within 12 hours of IV administration on my return, my back and leg pain again totally disappeared. I wish the IV therapy had the same effect on my neck injury, it does not.  I’ve been hiking 3-5 days a week, weather permitting. As much as I wish I could say IV therapy is a “cure,” I feel it is a “roll back” and/or “remission state.”  This alone is a Godsend and, for the immediate future, I continue in IV treatment to be able to live a full life.

Last week, another patient was experiencing horrific pain (she was not on IV therapy). She was administered the IV protocol and experienced dramatic improvement in pain levels. The IV therapy continues to demonstrate pain relief in all the patients receiving the same protocol as mine.  This is very encouraging.  I suspect, in time, this protocol might be considered one of the “mainstay” treatments in helping to squelch the inflammation.

May 06, 2010: Things are back on track.  I’m feeling extremely well. The neck issue has subsided, FINALLY.  Back up to hiking 5 days a week (weather is finally cooperating a little bit). I have to say, the exercise is not optional… the endorphins really help the pain levels. No narcotics on board and May 25th will mark the ONE YEAR MARK since I’ve been off regularly scheduled pain medications! There were maybe 3 or 4 weeks where I had to have pain meds 2 or 3 times within a given week due to the neck injury in March and April.  June 3rd will be a year off diazepam.  WOW.  Now preparing for Congress in July. It is so exciting to be able to go to the Congress meeting and I can’t wait to share my path. God is good … all the time.

June 14, 2010: What an exciting 6 weeks it has been. Ascorbic IV was ramped up to 60 grams, PK Protocol ramped up to maximum levels, bioidenticals on board, chelation once weekly, liposomal ascorbic and glutathione have been back on board for about a month. I feel GREAT.  Robaxin down to 500mg a day. 

I don’t think I’ve ever felt as much excitement as I do for the upcoming Congress and our trip to Chambery, France. Packing has begun and I leave June 25 for Knoxville, TN to pick up Connie Keeler. We fly to Paris for four days of fun on June 26, then on to Chambery with the rest of our group on July 1. We are READY! 

November 5, 2010: The Congress event was amazing. Transcripts will be available when they are able to be completed, a long and time consuming process.  I learned at Congress there is another Arachnoiditis patient that has gotten his life back through a similar process but without IV therapy.

At Congress, I was privileged to meet Dr. Jan-Peter Warnke, the only surgeon in the world performing a particular type of thecaloscopy for Arachnoiditis.  On viewing the procedure via video at the Congress, it became clear why it may work for patients with no other options.  An Arachnoiditis friend of mine had surgery September 19, 2010 and was “pain free” by mid October.  An amazing accomplishment.  Another great advancement and hope for the future.

A note on IV therapy:  The order of administration of the solutions seems to make a huge difference.  In October it was necessary for me to be away for an extended period of time due to a health emergency with my parents. I had treatment in Florida and they administered the PK Protocol before the ascorbic/mag.  While side effects were far less, pain relief was also far less.  We tried the protocol turned around for 3 treatments …. it does not work well at all for me. I am home and we have reversed the order back to 60 grams ascorbic/4 grams magnesium first, then the PK Protocol last.  There are more side effects, yes, but definite difference in pain relief.  It may take a few more treatments to gain back the ground I lost.  Experimental treatment continues to work for me. 

November 30, 2010:  My new physician, Dr. Eugene O’Neill, of Rio Grande Hospital Clinic, refuses to read the literature supplied to him on Arachnoiditis on Oct. 19, 2010. Dr. O’Neill is unwilling to learn anything about my disease or the Patricia Kane Protocol. He says he doesn’t have the time and his malpractice insurance won’t cover it.  On my last visit on Nov. 30, 2010, I brought Dr. Sarah Fox’ short paper ….a brief Summary about Arachnoiditis for busy physicians. When I told Dr. O’Neill I’d like to briefly discuss this paper so he could understand why I refuse preventative tests (mammograms, pap smears, other preventative tests), he went into a tirade about the PK Protocol, that he would not prescribe pain medication to even one more patient, how a patient sued him for saving his life, how 80% of the local population of patients in Monte Vista, Colorado are seeking narcotics and selling them, and said maybe I should go to Washington to see Ralph Holsworth.  Never have I met a physician that cares about his patients less. 

December 3, 2010:  Received a call from Dr. Ralph Holsworth yesterday. He has located a new provider for me familiar with the PK Protocol and willing to administer the ascorbic/mag IV.   

December 2010 – March 2014: It’s been a long time since I updated patients. December 2010 through June 2014 found me in Florida living with my mom and dad on an emergency basis as a court appointed guardian.  My dad passed away in January 2011 and mom passed June 2013. During this time frame I found a local practice to continue my IV treatment but have had no real physician guidance for Arachnoiditis.  

While in Florida, I joined the VAST senior swim team.  Unbelievably, I have competed in local, state and international level swim competitions medalling at all levels!  In 2011, I swam two relays with 3 team mates setting two new state records. In 2012, I swam first place at state level in backstroke. I’ve medalled in freestyle, backstroke and breaststroke. Who knew I could swim?  The swimming definitely keeps me in shape. AND, IT EMPOWERS ME!  When I slip into the pool, I am called by a nickname Coach Gary gave me the first week on the team, “Martini.”  I think of Martini like Clark Kent changing in the phone book into Superman. When I change into “Martini,” I tell myself I can do anything, I really do. 

New issues have presented themselves. Adjacent segment issues both sides of C5-C6 along with a C7 radiculopathy. Adjacent segment issues at T12/L1. March 2014 was my first lumbar MRI since starting this journey in 2008. It reveals Adhesive Arachnoiditis is still present. The ultimate result of IV treatment seems to be found in keeping the inflammation in check that keeps pain under control most of the time. Structural damage to my spine from repetitive surgeries continues.  If I am honest with myself, I have not been overly diligent during this three year time frame to stick to the protocol that best controls pain and symptoms. 

WHAT NOW?  What happens now is a choice I think.  I can crumble under the news and be ultra cautious avoiding too much activity. Or I can strictly follow the protocol and do everything I possibly can to stay active.  In the past some of my children have become very angry with me because I chose to do things that “could” result in pain and injury.  From where I sit, I have gone through a lot of hell to sit on the sidelines.  The very point of extensive surgery was to be able to participate in life.  There is no guarantee, not for any of us.

During the past 5 years I have lost multiple friends and patients to the fire of Arachnoiditis and the number seems to be increasing.  I think they would be very disappointed if I gave up. I can absolutely see Claudine in my mind’s eye as I swim. In my mind’s eye Claudine is healthy, jumping up and down, clapping and cheering me on from Heaven.  I choose to live life to the fullest. I can see Sheila laying down on her artist bed creating art and “showing up” for life each day, videoing her efforts and incredible courage. I choose to show up.  I see Terri and so many others fighting the political machine to prevent more Arachnoiditis patients. I choose to cheer them on. 

What now?  Back to the protocol, back to the pool and bike. I choose activity, courage and to show up.  I AM HERE. And I still believe, “Together we change tomorrow.”

Contact and Updates:

To stay updated on my activities, send a friend request on Facebook. Look up Karen Kovacik Early and in your friend request message box, please identify yourself as having read my bio on Life With Arachnoiditis and I will accept your friend request.

Go to www.acam.org to learn more about alternative medicine.  I’ve learned the “impossible just takes longer!”  I am very close to having my life back … it will be a life long journey I believe.

 LWA Mission Statement

Life with Arachnoiditis is a not-for-profit group open to EVERYONE. Our mission is to provide a hope-filled environment highlighting information, education and research. We also offer one-on-one communication with others affected by Arachnoiditis, Epidural Fibrosis, Failed Back Surgery Syndrome and other related spinal disorders.

Mission Statement by: Jon McHann, Grace Farm – Manchester, TN

My Story: A New Mother’s Epidural Gone Wrong

July 18th, 2014 by Michelle Babcock

New Mother and Baby

New Mother and Baby

In 2012, at the age of 32, I became pregnant with my first and only baby, a boy, due October 22nd of that year.

At my 40-week doctor’s appointment, my obstetrician measured my baby at 8.5 lbs and recommended an induction for Thursday evening of the same week, despite my wishes for a naturally-induced labor, and despite the fact that I had been battling a terrible cold. I went against my gut and trusted her judgment.

Fast forward to Thursday at 9pm.

Just before starting the Pitocin drip which would induce my labor, I was given the “informed” consent form for the epidural. Complications such as “a sudden drop in blood pressure” and “a spinal headache” were listed as risks. “Nerve damage” was listed as a “very rare complication.”

Adhesive arachnoiditis, the strangely-named, dreadful, incurable, painful, oftentimes progressive DISEASE with which I would later be diagnosed, was nowhere to be seen on the form.

After reading through the consent form, I asked the nurse what was meant by “nerve damage.” She explained that a nerve could be nicked and that I might feel a numb spot for a little while.

I recalled my birthing class, where the epidural was sold as “the safest method of pain relief for both mother and baby” – a procedure that finally ended the inhumane suffering that women used to have to endure during childbirth.

I signed the form “just in case” and we started the IV, which began pumping my body full of Pitocin.

For hours, I fought the progressively stronger contractions, my eyes closing between them, begging for sleep. Late the next morning, the contractions became unbearable. Not realizing at the time that I could have asked for the Pitocin to be turned down, I finally gave in and asked for the epidural. No other methods of pain relief were offered to me.

My potentially life-threatening wish was immediately granted. When Dr. K, the anesthesiologist, came in, I could barely breathe. He asked me if I had any questions. Even if I did, it was impossible to speak in my state.

“NO!” I screamed. “Well,” he said as he prepared my back for the procedure, “I have done over six thousand of these, and I have only witnessed two spinal headaches.   They’re not fun, but they go away almost instantly with a blood patch.”

I felt more reassured. As Dr. K advanced the needle, the contractions continued, hard, fast, and with just seconds in between. He then threaded the catheter through the needle and administered the medication. I immediately felt pain on my left side, and he asked me where I felt the effects. I answered that I felt it mostly on the left side.

He then either reinserted the needle or repositioned the catheter. It remains a mystery, as neither was noted in the medical report.

Oddly enough, immediately after the anesthesiologist administered my epidural, the nurse rushed to turn down the Pitocin drip, remarking how fast the contractions were coming.   Why she didn’t do that before I begged for the epidural I will never know.

Relieved, I finally slept for a couple of hours.

My baby came at around 7 in the evening (at 7 lbs. 13 oz. Not the Goliath of a baby my OB had described).

I was elated to meet my beautiful son. However, I became very worried at how weak my legs were when I finally stood up. I continued to voice my concern about the weakness and numbness in my legs for the next two and a half days, but the nurses kept telling me it was normal and that the epidural just needed some time to wear off.

The anesthesiologist never came back to check on me during my hospital stay despite my complaints.

On Sunday, my husband, my mom and I left the hospital with our newborn in the back seat. I still felt like I had a mini epidural. Here I was with a new baby, and all I could think about was why I felt like I was slowly going paralyzed.

Every time I sat down, my lower back would pulsate in excruciating pain that would begin in my spine and wrap around to my abdomen. My legs felt like jelly, as though they would collapse under me at any moment. I felt strange muscle twitches and an electric-like buzzing, pins-and-needles sensation in my legs. I could barely walk around the block. It was the first time in my life that I truly wanted to die.

With the neuropathy spreading to my arms, I wound up in the emergency room twice during my baby’s first few days on earth. During that precious time that most new mothers spend bonding with their newborns, I was in the ER pumping breast milk to feed my baby who was being cared for by my husband and mom at home. It broke my heart that I could barely hold him, let alone bond with him during this time.

I was told that my problems could not be from the epidural, as all tests and MRI’s came back normal, and I was sent home.

Oh my God, I thought. How could I be fine one day, go in to give birth the next, and come out like this?! How could it NOT be from the epidural? No one wanted to talk about the elephant in the room.

Weeks passed. I desperately sought the opinion of several other neurologists, all of whom avoided discussing the epidural and, after running numerous blood tests that came back normal, dismissed my symptoms as psychosomatic; a result of postpartum depression and anxiety. I was prescribed anti-depressants and sent home again and again with no mention of the epidural.

Months passed. Every day was filled with pain, weakness, and bizarre neuropathic symptoms. Burning pain one minute, ice-cold sensations the next, worms crawling under my skin, muscle spasms like a human popcorn machine. I continued to beg God to take me. Meanwhile, I had a baby to care for. I was a mother.

I put on a fake smile for months, as I did not want my baby to sense my pain and agony. I relied on my husband to hold the household together. My rock, he did all of the chores and cooked all of the dinners. I owe him a lot.

Every day, I used every ounce of my energy to care for my baby, using nap times to obsessively search the Internet for answers. I finally came across a page that described my symptoms perfectly. The disease was called adhesive arachnoiditis. A book had been written about it called “The Silent Epidemic,” since many doctors fail to diagnose it out of ignorance or fear, hence the code of silence.

I found the author of this book, Dr. Antonio Aldrete, one of the world’s premier experts on the disease, and sent my medical records and MRI’s to him for review. Shortly thereafter, he confirmed the diagnosis of adhesive arachnoiditis over the phone. Nerve root clumping was evident on my MRI’s. I was both devastated and relieved. Finally, I knew what was wrong with me. I was NOT crazy or anxious or just another postpartum depression case.

Then, I was angry. How did the other doctors miss this for so long? Do they not know what it is? Are they hiding it from me?

I have since gone through many treatments for my pain, and I live one day at a time. Because the disease is iatrogenic,(induced inadvertently by a physician or surgeon) little research has been done on arachnoiditis, so there is no specific treatment protocol. The medications I take are largely experimental in nature.

It has been difficult adjusting to life with a spinal disorder. A former avid runner and assistant cross country coach, I now cannot stand or sit for long periods of time without terrible pain. I rely on medications 24/7 in order to function and maintain moderately low pain levels. Unless a cure is discovered, I will likely depend on them for the rest of my life.

Needless to say, the physical challenges are met with equally difficult emotional and social ones. For example, others often mistake me for a healthy person or even a drug seeker, since I look normal on the outside. This can be very humiliating to the afflicted person, and it can be frustrating to friends who can’t understand why you keep canceling plans at the last minute because you’re having a bad pain day.

Just like anyone else, I have fears. Aside from the prospect of my disease progressing, one of my biggest fears is that I will no longer be able to work to help support my family, or that I won’t be able to have another child because of this illness or the meds I have to take. I don’t know if I can go without my meds, or how my spine can support the weight of pregnancy.

What do I want? I want doctors to listen to their patients and honor the oath they took before entering their practices to “first, do no harm.” I want OB’s to stop ordering unnecessary interventions, and to respect the natural process of birthing as much as possible. I want true informed consent well in advance of the procedure when the patient is in his/her right mind, and I want it to be more thorough to cover ALL risks, even if they are deemed “rare,” as many complications resulting from medical procedures are, in reality, not as rare as many medical professionals would have us believe.

In the case of arachnoiditis, since there conveniently exists no reliable system or governing body to report and monitor its occurrence, it is impossible to know how many sufferers are truly out there.

What has become clear is the fact that social media support groups are teeming with a staggering number of arachnoiditis patients, many of whom have suffered for years before finally getting an honest diagnosis. Their stories have yet to be heard and acknowledged by the medical community at large.   It is a disease that has been widely misdiagnosed, underreported, and/or mislabeled as “failed back surgery syndrome” or fibromyalgia, among many other disorders.

It is shocking how many doctors – the very doctors who administer spinal procedures – have never even heard of arachnoiditis. And it is sad to think how many people are out there who are wondering what is wrong with them, not to mention how many new mothers with legitimate medical problems are conveniently written off as postpartum depression head cases.

In short, I just want the truth to come out!”

Originally published in the National Pain Report, Michelle submitted her story for use at the Art For Arachnoiditis Project.

With Reasonable Accommodations offered in her workplace, Michelle was eventually able to return to teaching.

Epidurals and spinal injections for surgical anesthesia and pain management are a known cause of Spinal Adhesive Arachnoiditis and Caude Equina Syndrome. Find out more about the Risks of Spinal Injections and the Value of Informed Consent.

Have you had any additional unexpected and/or unexplained medical after receiving a spinal injection? You are welcome to share your story in the the comments below.

RESOURCES:

Delayed occurrence of spinal arachnoiditis following a caudal block  J Spinal Cord Med. 2011 Nov; 34(6): 616–619. “Context :Spinal arachnoiditis is a rare disease caused by fibrosis and adhesion of the arachnoid membrane due to chronic inflammation. The causes of arachnoiditis are infection, spinal surgery, intraspinal injection of steroid or myelography dye, and spinal anesthesia.” 

Cauda equina syndrome following an uneventful spinal anaesthesia, Indian Journal of Anesthesia. 2010 Jan-Feb; 54(1): 68–69

Cauda Equina Syndrome 

Cauda equina syndrome after epidural steroid injection: a case report. 2006 Jul-Aug;29(6):492.e1-3. at Pub. Med. Gov

Arachnoiditis Survivor Portrait Project Recipient, Melanie Lamb, talks about living with Arachnoiditis

January 21, 2015 Posted by Melanie Lamb on Facebook K-9 Trainer and author of Standing With The Dog, speaks out.
Survivor Portrait In Progress for Melanie
Survivor Portrait In Progress for Melanie at SheilaLynnK Art Studio

“What happens when people with my conditions wake up…
We have to get a grip on our body and focus beyond what “focus” means to most.
It always begins in my feet. Burning and needles- intensifying with each passing nanosecond, until you feel as if your feet have been covered in lava. With me, then it begins in my back – until my whole torso is engulfed from the inside out- organs feels as if they should be melting. It then spreads to the rest of my body. Heart pounding so fast it hurts and feels as if my chest is going to explode. Very deep, fast and intense spasms filled with electricity surge through every fiber of my being. Then the sweating and tremors begins. It usually takes about an hour to recover, or it can set the stage for how our whole day will go.
What happens when we are abruptly or unexpectedly woken up – the same thing- only 1000 xs Worse.
We don’t sleep like “normal” people, so we take and cherish what rest we are able to achieve. We don’t reach that REM state of sleep because we are lucky if we reach 3 hours of sleep while sedated before our pain or sensations wake us. I really wish I had the ability to allow some to really FEEL what it’s like… over and over for just few minutes. And a few select others, I wish they could feel it as often as I do. Every single day. Yet, what most of us do IF asked the question, How do you feel? We smile and say “I’m okay” – because deep down, we know that typically when we are asked that, most times the ones asking… really don’t want hear exactly how or what we are feeling because they either simply can’t handle the description they will be given, or, they just really didn’t want to know to begin with, but asked anyway out of habit. Then there are those in our lives that see the pain through our smile or hear it in our words- and refuse to accept that “I’m okay” is the final response and will do anything to make your world a better place… we are NEVER okay. We condition ourselves to get by and make the best of what we have. Our “okay” level of pain lands most people in the ER.
Love my Tish ♡ Today, we both recover .She is never far away.”

Melanie’s Journey with Arachnoiditis and RSD/CRPS

There is Hope

Arachnoiditis Survivor, Kenny Brooks

Is a former firefighter living in West Virginia with his dog Bailey. He is an arachnoiditis survivor. Following multiple back surgeries he was diagnosed with adhesive arachnoiditis ~ empty sac sign and associated complications. Because arachnoiditis can occur throughout the spinal canal, there is a diverse presentation of symptoms from patient to patient. Parallel symptoms of nerve injury are recognizable within the arachnoiditis diagnosis but each case must be assessed individually based on the exact location of injury, the cause of the injury, the extent of inflammation, distribution of pain, and the observed loss of function. As Melanie Lamb also lives with the invisible scars of the empty sac sign presentation of adhesive arachnoiditis, portions of her story resonated with Kenny. However, other variables are at play in his personal outcome.

Kenny is the next volunteer for Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm in America. He has asked that his dog, Bailey, and Kokepelli ~with other Native American designs~ be included in his portrait.

This is his face.kenny&baileyPhoto

This is his story.

 “In October 2000, I underwent a multi-level autologous Posterolateral Interbody Lumbar Fusion (PLIF). That’s right,copious amounts of autologous bone was removed from my right iliac crest. This bone was then placed inside of my lumbar spine, in order to fuse these vertebrae together. During the 9 hours spent in the OR, I had 3 units of blood transfused into my body due to blood loss. And, through microscopic visualization of my spinal cord, my neurosurgeon discovered that my Right L5 and S1 had developed Arachnoiditis. My neurosurgeon was assisted during this surgery by an Orthopedic Surgeon. Both surgeons were Board Certified and both surgeons were Associate Professors at George Washington University and Georgetown Medical Schools, located in Washington DC. It was the goal during which consisted of 2 lumbar punctures using a 20 gauge Tuoghy needle. The needle punctured through my thecal dural sac and the doctors injected into my spinal canal a radiopaque dye, which happens to irritate the spinal cord, Cauda equina, and the delicate membranes which surround my spinal cord. Immediately, dynamic X-rays were obtained followed by an enhanced CAT Scan to visualize my spinal cord and cerebrospinal fluid, and all surrounding anatomy including my spinal nerves to see what was right and what was wrong.surgery of decompressing my Left and Right L4, L5, and S1 nerves roots and stabilizing my lower spine from preventing these recurrent disc herniations from happening again. This happened several times previously, and unless my spine was fused together it would continue to happen. Prior to the fusion, I already had undergone 2 major open back operations, which consisted of both laminectomies and discectomies to remove bone and make room for the compressed nerves.

I also had undergone prior to the fusion 2 spinal taps, which consisted of 2 lumbar punctures using 20 gauge Tuoghy needle. The needle punctured through my thecal dural sac and the doctors injected into my spinal canal a radiopaque dye, which happens to irritate the spinal cord, caude equine, and the delicate membranes which surround my spinal cord. Immediately, dynamic x-rays were obtained followed by an enhanced CAT Scan to visualize my spinal cord and cerebrospinal fluid, and all surrounding anatomy including my spinal nerves to see what was right and what was wrong.”

Like Melanie, Kenny was left with the daily, unpredictably hellish torture of muscle, joint, and nerve pain.

“The nerves in the lower segment of my spinal cord are encased with scar fibrosis with granulation tissue wrapped around the nerves. This scar tissue and extensive granulation tissue starves the nerves of essential nutrients deprived from my cerebrospinal fluid. The very life is literally being squeezed out of them in response.

The spinal cords function is to control nerves that serve organs and control muscles, and send information to my

brain back and forth. The scar fibrosis has devoured them; attaching itself to my dural thecal sac which surrounds my spinal cord and now adheres to my spinal cord. This affects the way that my cerebrospinal fluid flows from inside of my spinal cord all the way up to my brain. Empty sac sign means that if you opened up my back, you cannot see that part of my spinal cord. Instead, you see granulation tissue and scar fibrosis. It is stuck together to the nerve fibers in a glue like fashion, from the presence of granulation tissue and scar fibrosis. The nerves adhere to one another, sticking to my dural thecal sac, hindering me from certain movements and causing severe pain with all other movements…This includes bending, stooping, pushing, pulling, reaching, etc.”

The spinal cord no longer moves freely within the spinal canal. Instead of stretching as it should, movement and activity repeatedly rip it painfully free from the scar tissue only to be adhered anew.

 “A quality of life does not apply to me, as once it did. There are many tertiary problems associated with Adehesive Arachnoiditis, such as Radiculopathy, drop foot syndrome, Reflex Sympathetic Dystrophy, atrophy, among other things. Also, anxiety and depression follow me everywhere that I go. I have lost my range of motion, I have atrophy and loss of tone, which causes leg and foot weakness. This has caused problems for me just trying to simply walk. I suffer extreme burning in my legs, ankles, and my feet.”

These nerve injuries can create extreme skin sensitivity which makes the friction of clothing intolerable at times.

 “The nerves affecting my spinal cord are the same nerves that send signals to my bowels and to my bladder for Communications  from my brain to work properly. As a result, I cannot feel my bladder when it is full and when it is empty. The same goes for my bowels.”

 Invasive spinal procedures must be avoided to prevent further inflammation and compression of the nerves.

Arachnoiditis Survivors constantly battle pain to sustain mental focus.

 “I suffer cramping and muscle spasms across my entire lower back, from the bottom of my 12th ribs all the way down to my ass. When the cramping is relentless and severe enough, it is a job to simply just try and breath. With every single breath that I take when those contracted muscles feel like they are about to explode, I have learned to take deep breaths while holding it in long enough but not so long that I am going to pass out. I admit this is the worst pain that I suffer from when just simply trying to breathe.

 I have sleep disrupted every single night that I lay down. Even laying down does not always help relieve pain. I sometimes get on my side in the Decubitus position, with my knees pulled all the way up to my chest in the hope of some relief. The goal is to take pressure off of my muscles in my lower back, but this also will stretch my spinal cord which can no longer be stretched and can cause refractory pain.

Because of the blockage in my spinal canal of the free flow of my cerebrospinal fluid, the fluid going from my spinal cord and up to my brain is impeded. This causes me to suffer headaches that are relentless, and feel worse than any migraine ever will, and there is nothing that I can do except to make these headaches go away. Also, the blockage of fluid is beginning to cause me to suffer from visual disturbances and I have difficulty now seeing things. The process of walking causes stimulation. Stimulation causes muscle spasms, deep inner cramping. Spasms and cramping cause severe relentless pain. It is all that I can do to just walk my dog.”

Every shift in position irritates the nerves creating inflammation and increased nerve compression.

 “I can no longer walk on my heels. My ankles can no longer dorsiflex without assistance from either bracing a wall, a person, or using a cane. I cannot walk any longer on my toes without assistance from a wall, a person, or a cane. My ankles can no longer plantarflex, without assistance. These are indications that my nerves which innervate my ankles and muscles to make them work are becoming slowly paralyzed. It is a vicious painful unrelenting process, both physically and mentally.

Standing, sitting, walking, have all become a working task to me. I must pay close attention, particularly to the amount of time that I spend doing these activities.”

 Arachnoiditis Survivors endure an agonizing loss of mobility and muscle weakness.

“I am facing the possibility of someday being in a wheelchair. I would be using a cane to help me stand, walk, get up and sit down, but it is not possible to use a cane while walking a dog. I have already tried. It is hard to walk without a dog and easier to move around with a cane, and I suffer more relentless painful agony as a result. But, I don’t blame my dog because he is my best friend and it is not his fault.”

 Survivors frequently work to exhaustion to shield caretakers, family, and friends from the extent of the unbearable aspects of this pain. Daily schedules are dictated by pain patterns.

 “ I smile when inside I have not much to be smiling about. I believe my family suffers as much as I do.

 One day is different to the next, and to the day before. I have learned to listen closely to what my body is telling me. Choices really no longer apply to me, they haven’t for years.

I used to run, swim, play soccer, carry people, lift things, drive long far places, run up and down stairs, jump in and out of a car. I used to rescue people, fight fires, treat people in emergencies, care for others in need of immediate care. Those days are long gone, all that’s left are memories. But I can’t even seem to remember what it was like to run anymore, much anything else.

 It’s like I am 38 years old inside the body of a person who is 70 or 80 years old, twice my age. But I have been dealing with Arachnoiditis since 2000, almost 14 years. I have worked since, I have worked several different jobs in several different places. And because I am so young, work seems to be a hot issue. I can appreciate anyone not wishing to throw in the towel, but there does come a point regardless of how smart you are, or how well you dress, and how great your eye contact is…. Those have nothing to do with invisible scars that one cannot see from the outside…”

In addition to the daily struggle to cope with the pain and limitations of arachnoiditis, most survivors must also battle the medical community for validation and appropriate care.

 “(the practitioner)…diagnosed me with everything from Failed Back Syndrome to Post Laminectomy Syndrome to Myofascial pain syndrome, but he refused to use the “A” word. Yes, he kept it hidden to himself and allowed PM to continue poking me over and over again, more than 15 different times until the point came I had to stop working due to pain. Finally, I got on an airplane and I went 1000 miles away from here to see a new Doctor located in Columbus, Georgia. His name is Dr. Thomas Bernard, an orthopedic surgeon at the Hughston Clinic and he was the first to diagnose me, in 2009.

I refused to believe Dr. Bernard who explained to me in a very nonchalant manner that I was “suffering from a condition called Arachnoiditis”. I knew what that meant. I was in denial. I asked Dr. Bernard if he would send my MRI to Baltimore to be looked at by Dr David Mark Yousem. I do not believe that Dr. Bernard was insulted by me asking him to get another opinion. He was gracious and more than willing to send the films out for second interpretation.

He sent the films to Johns Hopkins Hospital in Baltimore, MD…well known to be One of the best hospitals in the USA. The Director of the Department of NeuroRadiology was the Doctor who gave me a second read. His name is Dr. David Mark Yousem, a Board certified NeuroRadiologist. It was confirmed that I had AA. It was also found by Dr. Yousem that I have blood present in my thecal sac causing arachnoid adhesions and the thecal sac is narrowed. Dr. Yousem also found granulation tissue behind the L4 vertebrae and extending all the way down to my sacrum. Dr. Yousem found that nerve clumping is present consistent with Arachnoditis. Dr. Yousem also found a disc bulge at L3-4. He also found that I have Endplate sclerosis at L4. Dr. Yousem described the L4-5 and L5-S1 roots on both sides and the thecal sac on these levels encased with granulation tissue.

When I confronted my neurosurgeon of these findings and explained to him that I went 1000 miles Away and obtained a second opinion, then he finally gave in. He used the A word. But he stated on the record that “We had been aware of this for many years”. That is not true. He was aware but clearly refused to share this with me in fear I would sue him which I would never even consider doing such a thing, that is what enrages me with anger. I wish he just told me, I would never have agreed to undergo any further interventional procedures had he just told me this simple fact.”

Injured workers who develop arachnoiditis must also fight for compensation of lost wages. This can be a long drawn out process with little legal assistance or medical support. With the physical limitations and impaired abilities of consequential spinal adhesive arachnoditis, the battle on this front is often complicated by the grief associated with job loss and the complicated adjustment to adaptive independence. Depression is not uncommon. Faced with obstacles, imprisoned by pain; suicide sometimes seems like the only path to freedom.
“Here is my diagnosis:
I am Status Post 2 Laminectomies
I am Status Post Multi level Interbody fusion with pedicle screws and cages
I have Arachnoiditis L5 – S1
I have blood deposits in my thecal sac L5
I have a disc bulge above my fusion L3-4
I have Endplate Schlerosis L4
I have hypertrophy of posterior ligaments L3-4
I have failed to rehabilitate

I have not worked since Nov 2006, that’s right 8 years.

The workers compensation Commissioner feels it is sad that we are not going to try to do something about working. Instead of seeing my family as caregivers, he saw them as being a burden because of what they do to help me. My neighbors and friends also are caregivers.

The Commissioner felt that if vocational rehab fails then of course, I am 100% disabled and it might be a total failure. He increased my rating from 90 to 92% total disability but found that I am not totally disabled because I refused Voc Rehab.

My doctors have said for years that I should not be working. He did not listen because he is “too softhearted”. He said the problem is “my age, and what he perceived to be my great appearance, amiable personality, good eye contact”, etc.
…  …  …
I believe the largest impact it has had to me in my life is the loss if my Job working as a firefighter/paramedic.

I began training for this job in 1992 and i continued working until February 1998.  My lifting injury occurred on the job in 1996, while removing a trauma patient in too much a hurry to get him into the trauma room at the hospital. 

I ruptured 2 lumbar discs and developed severe sciatica. I had 2 surgeries and went back to working full duty, but ruptured those discs again 8 months later.  Finally in 1998 the doctors felt that I had no choice but stop working in the fire service and that a fusion was needed for stabilization.

I miss working.  I miss the firehouse.  I miss the fire trucks.  I miss the medic unit.  I miss my coworkers, my “second family”.  I miss helping others.  I miss every aspect of work you can imagine.  The most difficult thing in my life so far was walking away from my work that I loved so dearly. 

Nobody with a fusion can pass the medical exam needed to return to work. I knew my career was over when the doctors told me the fusion was needed or the discs would continue to rupture again.  Only 3 days after learning that a fusion was in store for me, I attempted suicide.

I regret deeply and feel shame for trying to do such a stupid thing.  As a result of the trauma from the suicide attempt, I developed chronic PTSD for which since 2000 I have seen my psychiatrist every 2-4 weeks.”

Life with Arachnoiditis can be a lonely existence. The Art For Arachnoiditis Project is working to defy this isolation.

“ I am also only one patient and I know for a fact there are countless others out there who are desperate to understand the meaning of Post Laminectomy Syndrome. There are many people out there with AA who have no idea they even have the condition and continue the fight for pain relief by continuing to undergo these procedures which only do more harm. I feel lucky that I finally have some closure in what has been a long fight and a great mystery. 

I think the only way to increase others chances is to share my experience with them, to tell others there is hope, to be patient and listen to others, to not become complacent in the midst of a sever chronic pain condition, and to not be discouraged. Yes, there is no cure for AA, but If anything I do finally have some closure which I have desperately needed for years. I don’t see myself as a victim, because I don’t want others to see themselves that way. We are humans, and humans are a resilient species. We need to be strong as a group and community of people for the countless others who each day are learning they too have this problem and they need support, help, and understanding.

We are only defeating ourselves and allowing ourselves to be defeated, should we be victims. We are strong. We are the future of helping others with this problem and must be there to help others. Today, there is somebody out there who will learn they have this problem. They need us, they need our stories, they need our understanding and support. And I am here to do just that.”

Some survivors seek comfort and strength in God and their faith. Others find it in nature, spirituality, the arts, family and friends, or helping those in need. Whatever method serves, we must never let them believe they are alone in its discovery. ~slk

 

Stuck on Survive

Since September 2012 former Police Officer and Musician, Jack Pavlekovich, with the help of his family, has been struggling to survive.

Jack last performed live with his band and his daughter in September 2012, when he received an epidural steroid injection shortly before the performance. Jack had previously had back surgery to repair/manage an injury that he suffered in the line of duty as a Police Officer in South Bend. Although he had several epidural steroid injections which helped manage his back pain, eventually his condition warranted a neurostimulator implant in his spine.

He experienced some relief from this procedure. Eventually, the implant stopped helping. Jack again received epidural steroid injections to manage his pain. Although the first series of injections did not seem to have any adverse effects initially, the last two he received at OSMC in September 2012 were contaminated (at NECC) and he developed life-threatening Fungal Meningitis. 751 other people also received these contaminated products. To exacerbate the initial fungal assault; the neurostimulator implanted in his spine had broken and was actually pumping this fungus into his nervous system as well as his spinal fluid. After intense and expensive treatment including on and off treatments with  voriconazole, an anti-fungal medication , from October 2012 to April 2013; he showed signs of improvement with an all-clear for fungal presence in the spinal fluid.

However, all of his symptoms resumed shortly after he had completed the voriconazole treatments. He was sick off and on for months. Doctors could not figure out what was wrong. His chart stated that the fungus had been cured. Finally, in March 2014 a Beta d Glucan Assay was conducted. Jack and his family were informed that he was the third one to be RE-INFECTED with the fungal meningitis. He was put on a different anti-fungal medication,  Itraconazole to fight it. Jack has spent a great deal of time in the hospital and in  ICU. His spleen had to be removed as  a result of this attack on his body.

Over the weekend, I had the  honor of meeting Jack and his family for inclusion in the Arachnoiditis Survivor Portrait Project.  After coming face-to-face with death, Jack and his wife Tammy strive to resume stability for their two children, Ashlee and Jamie. As a result of this preventable near-fatal illness, Jack and Tammy expressed concerns that the girls, “have had to grow up too fast.”

Witness to their father’s painful and debilitating experiences, each of them is attempting to find a way to cope.Behind her lovely smile, Ashlee seems to have developed a quiet strength which permits her to keep her own counsel about her fears while offering an arm to assist whenever she can.

Sep 20, 2014

Writing and illustrating her own book about their story, Jamie has turned to art as a means to describe this battle to others and allows her bright sense of humor to ease the weight of this reality.

Sep 20, 2014 Sep 20, 2014

Jack and Tammy have replaced “date night” with Doctor’s appointments.

Researching complex medical information pertaining to Jack’s case and faced with very tough decisions about:  his care, the financial realities associated with this combination of insult, illness, and injury, and how she can keep her family strong, Tammy, who is coping with some stressful medical concerns of her own; continues to seek answers .OLYMPUS DIGITAL CAMERA Sep 20, 2014

For Jack, it is painful to see how this affects his family. He knows his children are always looking for the father they know is in there somewhere. With so many variables churning around his medical outcome, it is difficult to reassure him that he will find new ways to be an active participant parenting his children. Illness and injury of this magnitude elicit a daily , moment-by-moment fight to inhabit an injured body and a wounded soul attempting to walk in the land of the living while we dangle our digits over the precipice of the grave. Grace is scarce. Time is limited. Anger is abundant. Hope is fragile.

Recently, Jack was informed that this fungal infection in his spine has resulted in Spinal Adhesive Arachnoiditis in his neck and the L3 to L5 levels in the lumbar spine.  Faced with the pain and isolation of this double whammy of medical injury, Jack says that his Family, their cat-Hailee, His Music, and His Computer are the things that keep his interest and help him to not give up. Jack has asked that these elements be represented in his Conceptual Portrait. The portrait will be shown in progress on the Art For Arachnoiditis Facebook Page and displayed in the public art Exhibit to increase Arachnoiditis awareness. Jack will receive a free copy of the drawing to keep.

It is expected that Jack and his family will always have to monitor, and sometimes seek treatment, for signs of a recurrence of the fungal infection. Now, Jack and his family will also have to learn to navigate the ins and outs of living with Arachnoiditis. Litigation promises some level of financial assistance however, any compensation award distributed by NECC will have to be divided among the 750+ people affected by the injurious, contaminated products in these spinal injections.

The neurological injuries and extensive medical treatments he has endured as a result of this infection have damaged his vocal cords and make it difficult for Jack to play his guitar or remember the notes and order of the music. A long time musician and performer in the band, Chantilly Lace, Jack misses creating music and sharing it with others.

I believe healing can be found in the arts. Perhaps there are adaptive methodstools,  or equipment that will permit him to play again when he is ready.

~Sheila L. Kalkbrenner

 

Not All Scars Are Visible

Not all scars are visible. Not all wounds heal.

There are many faces to those of us who suffer from what is called Arachnoiditis. There are the faces of those with arachnoiditis cysts, and the faces of those with what is referred to as Adhesive Arachnoiditis- empty sac sign. There is no cure.

This is my face.

I have Adhesive Arachnoidits- empty sac sign.

In October of 2009 I underwent a common procedure called a Lumbar Puncture. This was needed to check the pressure of my spinal cord fluid as I had been diagnosed several months prior with what is a called Psuedo Tumor Cerebri. That’s right, basically a false tumor. This day changed my life.

I was uneasy. The whole morning had been a mess. The hospital had lost my files. It took almost three hours to get into the surgery room. During previous punctures, I had been sedated.  Not this time. No sedation, not even a muscle relaxer to calm my nerves for this procedure.  The physician performing this procedure did not have an assistant to help him reach for the tools on the surgical table. I had a needle in my spine attached to a tube to record the pressure. At one point the physician couldn’t reach a specific tool he needed to finish the procedure. As he reached for the table, he got off balance, and in turn jammed the needle into my spinal cord nerve roots.  The sensation was beyond any torture I could have imagined. I screamed a silent scream of agony. Tears flooded my face. My best friend Kevin, was with me during the procedure, holding onto my hands. The torture had only begun. I am not sure how Kevin survived the event, let alone me in all honesty. Before the physician could remove the needle, he had elevated the table.  That motion jarred the needle in my spine even more. The rest is a history of hell. It began with peripheral nerve root damage. Every day of my life, since that procedure, I have experience some degree of agonizing pain. It erupts inside of my body. What level of hell I will be forced to endure, on any given day I do not know.

The lower two segments of my spinal cord nerves are encased in scar tissue.  This scar tissue starves the nerves of the essential nutrients derived from my cerebral fluid. The very life is being squeezed out of them.  The spinal cord nerve’s purpose is to feed and control specific organs and muscles and send information to my brain. The scar tissue has devoured them; attaching itself to the wall of my dural sac, leaving me with what is referred to as Empty Sac Sign. Meaning if you opened up my spine, you would not see that part of my spinal cord.

Empty Sac Sign, causes the body to suffer stages of shock. It is a repeated trauma; muscles ripping uncontrollably at times, as the nerves begin to misfire. Without exaggeration, I feel every fiber separate.

For most people, when they walk or sit and lie down, their spinal cord moves, glides up and down. Mine does not, as the nerves are adhered to one another, hindering certain movements, and causing pain with all other movements. There is a burning within that never subsides. I repeat, NEVER. It is not like someone lit a match inside you, or the burning associated with a torn muscle. It is as if a volcano were erupting from deep within. The lava consumes every fiber of my being.

There are many by-products of having this debilitating condition. Atrophy, RSD (Reflex Sympathetic Dystrophy Syndrome) Drop foot and Neuropathy are just a few.  Loss of range of motion, discoloration, swelling, extreme burning, and the feeling of bugs crawling under your skin, muscle loss which causes weakness, become a part of life. Sometimes the skin sensitivity is so extreme, even wearing clothes is too much to bear. Sustaining mental focus due to unrelenting pain is a constant battle. Sleep is disrupted every night.  Even while medicated, I can only sleep a few hours.   The process of waking causes stimulation. Stimulation causes spasms, deep inner spasms. Spasms cause pain. The burning sets in. It is a never ending cycle.

The spine can never be entered again, not even with the tiniest of needles as it will only irritate the nerves and progress the growth of scar tissue.

Sitting irritates the nerves. Standing irritates the nerves. Walking irritates the nerves. Attempting to take on what would normally be considered as everyday tasks, irritate the nerves. When these nerves become irritated, swollen, compressed even more on to one another, the internal hell heightens to an indescribable level. For caretakers, family and friends coping with another’s pain is unbearable.  Helplessness surrounds us all during this time.

Days are difficult to plan. I can no longer depend on a schedule, because my body will dictate otherwise. I reach a point where I wonder to myself; will I be able to walk today, and for how long? It is a painful process, both mentally and physically. Losing the mobility and strength of my muscles is agonizing.  There is nothing to numb the pain during this process. I fight the resistance in each step with all I have and, do my best to smile to shelter those I love from my pain.

I used to run. I used to ride horses. I used to love to go for rides in a jeep, of course top down.  I used to run tracks.  I used to train dogs that have been deployed and, served internationally providing security and protection for us all. I used to be on the end of a leash.

Things are different now. I am learning to pace myself.  Learning to work from the bench so to speak; “sit on the porch” as my oldest son says.

I continue to give myself to God each and every day to work His will through me, to help others through me, to touch the lives of others.  I tell myself every day, that it is possible this happened to me instead of the little old lady or man that may not have survived it, or maybe I took the place of a child on that day. I tell myself God has reason in all of it and his Son went through more than this for me. It is the least I can take on.

As a final note I must acknowledge and thank the many care-givers of those who suffer from this debilitating and torturous condition. You simply save us and get us through, when we feel we can’t take the pain one more minute. Without you- we simply could not survive.

My name is Melanie. I am a child of God. I am a mother of three children. I am a Grandmother (Gammy Mel). I am a K9 Trainer and Handler Instructor.

Every day is a new day, and this is my now.

“I can do all things through Christ which strengtheneth me.”

Philippians 4:13

~Melanie Lamb

For more information about Arachnoiditis I found these websites to be very helpful and informative.

http://www.burtonreport.com/infspine/adhesarachanatomy.htm

http://www.lifewitharachnoiditis.com/

http://www.arachnoiditis.info/about_arach_main.html

http://www.arachnoiditisusa.com/

http://www.youtube.com/watch?v=QL6z1DnoJao&playnext=1&list=PLFE7D04E18D51AE59

http://www.youtube.com/watch?v=NxsenvqYClw   (this is a video of me going through an episode)

Follow Melanie’s arachnoiditis and RSD/CRPS story on her facebook page.

“Understanding Arachnoiditis: Please Hear Me” ~Dawn M. G.

People sometimes just don’t get that yes I make sacrifices daily to live and do things but will pay for it greatly. And that normally causes me to crash and have a few days rest. Yes when I push I can do something I really set my mind to but it comes with a price. When I say no, I can’t do that, yes, I may have done it in the past, but i paid for it dearly! And it’s not that I don’t want to, it’s just that I realize my limits and capabilities.

Yes, it seems like I always do try and do the fun stuff, but don’t push myself as hard to do things I don’t find as important as making memories and living an enjoyable life. And yes I say no to stuff that is normally everyday stuff because I’m usually paying for just trying to be there to have somewhat of a life. It just doesn’t seem to make the connection there. This is when the Spoon Theory comes in handy. But some people just don’t listen no matter how many times you tell them, and won’t take the time to read and understand.

Yes, I do have new explanations for symptoms and pains, because yes, I am always learning new stuff about why I get this pain, this symptom, why I should avoid this because it leads to that, I need to do this now because it can cause that, and I do this now or don’t do that because it’s happened in the past and I’ve learned my lesson, and no I have absolutely no idea about the future. I live in the moment. I have absolutely no choice.

Yes I’m having to learn how to do things differently, and I’m learning constantly my cans and cant’s. Yes my moods change frequently because I can feel a little better today than yesterday, which made me feel like I accomplished something, but tomorrow I’m going to be cranky and depressed because I’m going to be feeling absolutely awful from doing the smallest things, and yes I’ll be full of emotions because it makes me realize just how much my life has changed.

Yes sometimes my mind is occupied so I forget about what tomorrow will bring but the same thoughts might scare the living crap out of me tomorrow because I’ve actually had time to be in my head for a while and face whatever tomorrow may bring.

Yes all of this does exhaust me, confuse me, depress me, frighten me, and no I really don’t understand things any better than you do. Yes you do hurt my feelings when you scoff at me thinking I can do something in the future that I wasn’t able to do yesterday, and can’t even get out of bed today.

Sometimes you just don’t realize that sitting and resting like a “normal” is actually really hard work and takes spoons just as much as walking or trying to do something. Yes, I will need to lay down and rest just as much from sitting and doing “nothing” than I would walking and trying to do “something” , and sometimes it will actually take sleep to recover and I will be absolutely wiped out the next day from doing a lot of it. Sitting and watching a movie feels like I’ve just run a 5k.

And yes spoons aren’t automatically replenished in the morning. You have to earn them back by resting. Some days you only earn back 3 spoons. And finally no, I didn’t ask to be this way, no I don’t like it, yes if I had to choose I wouldn’t do this over again, and yes, I will try to make the absolute best of things that I can.

-Dawn Marie G-