I was a normal everyday female stuck somewhere between girl and woman during the 28th year of my life. Married, no kids, career slowly taking shape, a new puppy. Things looked good, awesome happenings were on the horizon. Then I started having health problems. Unexplainable, non-evidence producing pain and fatigue often disabling in severity. I was no stranger to the hospital, having suffered three pancreas attacks caused by a genetic triglyceride disorder in my past. I toured a handful of doctors who each ran the same battery of standard tests, then declared I was either fine or depressed and recommended an anti-depressant. So I started taking Welbutrin XL.
Meanwhile I had been trudging through the quicksand of fatigue in pure physical misery for at least six months. Everything hurt. The best way I can describe it is imagine the worst flu you have ever had in your life. Amplify that ten times, but you either can’t sleep or wake up exhausted. Now just when you think you have turned the corner and are getting better it comes raging back and knocks you on your ass again. Then go live and work like that everyday, but don’t forget technically, according to modern medicine, you are not sick. It was so much more than depression, it was a slow boat to insanity.
Brokenhearted, I took a self-imposed demotion at work. I was not capable of performing my executive responsibilities and sought to preserve my reputation from taking the hit my health was causing. I knew as soon as I got better from whatever was wrong with me I could resume climbing the career ladder at that time. But they still had not figured it out, anything out. And then I found him, the doctor who believed me. I started charting my symptoms and he began testing illnesses which matched my complaints. This was a lengthily and horribly expensive process, and I had great insurance. During this phase my illness progressed as I rebelled against it. Type A to the core, I pushed myself to meet the expectations of my life, but I was breaking down badly.
When every possible illness had been ruled out I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) as a diagnosis of exclusion. An endocrinologist I sought for a second opinion diagnosed me with CFS/ME and Fibromyalgia (FM). I was fit to be tied. They were both illnesses nobody knew anything about, there was no way to prove and nothing available to treat them! And the name Chronic Fatigue Syndrome, are you kidding me? I was sick as a dog and the best these doctors could tell me was something with a name that sounded like I needed to take a nap? And there was nothing they could do? Seriously? It was the strangest kind of hell.
Pushed to the break I did. About a year and a half after my symptoms started I had an emotional breakdown, followed very quickly by a physical one. I started taking Neurontin, an anti-seizure drug which helped anxiety and strangely enough pain as well. I was completely disabled at the age of 30. At my lowest low I was so sick I could hardly leave my house for more than 20 minutes at a time. When I took a shower I had to lie down for at least a half-hour before I was able to put lotion on my body. My exciting afternoon activity consisted of emptying the dishwasher, but only if I rested before and after for a couple of hours. For if I pushed at all I literally felt like a smackdown from a brick wall punched me in the face. And pretty much anything was pushing.
It was 2006 and the internet was in full swing. Yet there was no information on these mysterious syndromes. No support group to tell me how to get through this, no advice from sagely and experienced patients who have learned through the test of time. From Fatigued To Fantastic was recommended to me and I started learning about all sorts of far-out health conspiracy theories and ideas. As I researched I realized many of them were true! Nobody knew what caused these illnesses but there was plenty to do about it, just nothing which had passed the rigorous double blind placebo controlled studies of modern medicine. I embarked on a self-education expedition which changed the way I forever viewed the world, lived my life and experienced reality.
After lots of research and careful consideration I decided a private specialty clinic, which provided both modern and holistic medicine through a decorated medical doctor for quite a high price, was the way to go. So I sought treatment. It really was not an option, for there was nothing else I could do. I knew there was something real wrong with me but was slipping through the cracks of our modern medical system. They were at a loss and seemed to have adopted a “blame the patient” mentality.
So off to the clinic I went. It was heaven. They knew more about what was wrong with me than I did! No doctor to date had impressed me so. I gave them 31 vials of blood. They gave me bags of supplements. I believe the first visit, not including custom compounded prescriptions, came in just under $1,000. I took a huge gulp and pulled out my friend Visa. This was turning out to be a rich woman’s disease.
Shortly after starting the complicated, lengthily and exhausting routine of vitamins, herbs, lotions and potions I started feeling a little better. Any progress was a marked improvement, for I had been sick for two years. My immune system responded to the treatment. I started sleeping, waking up from dreams refreshed. It had been years, how had I not realized I wasn’t dreaming? Slowly but surely I was able to take my dog for a walk again. I took a class at the community college. In the beginning I trudged up the hill weak and exhausted and by the end of the semester I was, well, not nearly so weak or exhausted.
The date my disability ended loomed near. It was a very important goal I had been working towards, to be able to go back to work. On April 14th, seven long months on short-term disability later, that is exactly what I did. But I was still quite sick and in severe pain. Thinking positive may have got me back to work but was doing absolutely nothing to make sure I stayed there.
I started taking Percocet to get through the day. On my days off I laid in my house and cried, all the opiates in the world unable to damper the burning fire inside me. Many mornings the sheer act of walking from my bed to the bathroom sent crippling stabbing up my legs. I hurt and was living on pain dullers and was a total bitch. My husband and I were having money problems and marital problems and social life abandonment issues. As improved as it was, life completely sucked.
The clinic tested my latent infection levels. I learned a few things about viruses. When one infects a person they forever carry that virus with them. It comes in as the flu or a cold, does it’s dirty work and a week or so later becomes dormant as the immune system catches footing and squashes it down. But simply boosting my immune system was not enough, the viruses were too strong. Viruses the majority of the population would test positive with a very small marker from a past infection produced outrageous numbers on my report. I tested positive for CMV, EBV, HHV-6, multiple bacterial infections and Candida. I went on anti-virals and antibiotics and anti-fungals, getting my blood tested weekly to assure my liver was competent enough to handle all it was being asked to.
The indication of HHV-6, combined with my outrageous markers and physical symptoms, placed me in a subset of CFS/ME patients diagnosed with Virus Induced Central Nervous System Dysfunction (VICD). A doctor at Stanford University was doing a clinical drug trial on a medication to treat VICD called Valcyte. I met with Dr. Montoya and was not selected to participate in the study due to the other treatments I was receiving, but was prescribed the medication through the Fibro clinic. HHV-6 is a nasty little bugger which infects the central nervous system and is particularly resistant to treatment. The drug was a toxic carcinogenic, quite controversial and not guaranteed to work. I was 31 years old and took my chances.
That is when the real pain began. As the drugs worked and killed off so much toxic illness inside me pain shot through my nerves and out my pores. I ached and throbbed and wanted to die. I could not imagine living like this the rest of my life. The doctor at the clinic assured me the pain would eventually lessen as the sickness died off.
Again I ignored the clanging symbols my body was beating out in front of me and went and had a fourth pancreas attack. If I thought I knew pain before, Pancreatitis with Fibromyalgia kicked it up to a whole new level. My primary care doctor thought I was a junkie and refused me adequate amounts of pain medication, like I had a pancreas attack for the excuse to get high or something equally lame.
She started me on Cymbalta and I started to sweat profusely out my head. I also started staring into space a lot. Then I was taken off Neurontin and put on Lyrica. It had recently received FDA approval to treat Fibromyalgia, was the first medication with that distinction. My fatigue noticeably improved as the infections bowed down to my strengthened immune system. She was finally doing her job!
The pain was still not adequately managed and I cried to my doctor that I could not work with how bad I hurt. She told me the only thing left was a Fentanyl pain-patch and I was too young. Then she said the words to me which explained all the behavior of every clueless doctor before and since. “You are a pretty girl, it is a shame you are so unhappy.” With that she slammed her book shut, told me to figure out how to get myself better and flounced out of the examination room. Oh yeah, I thought, I am supposed to be just depressed.
I started with an acupuncturist. From the first visit the relief was tremendous. She was an amazing healer who re-introduced the quadrants of my body to each other. Everything had become so divided, blocked, stagnant. The difference before and after a treatment was profound. I could walk in fogged up to my eyeballs and leave clearheaded and capable. I credit my marvelous acupuncturist with much of my healing.
My husband and I moved from San Francisco to Arizona, leaving a high cost of cold living for a lower cost of hot living. Both were a necessity because of my illness. It had demolished my career and put us in major debt. The cold bay fog ached in my bones, made everything hurt so much worse. I was thrilled when the dry hot Arizona desert made a massive difference in my pain level almost immediately. If what I had in San Francisco was a tsunami this was a tidal wave. The pain relief was incredible and I am convinced I am part reptile.
I severed ties with the Fibro clinic because I ran out of money. They had helped, done their job, but I could not afford them anymore. CFS/ME was in my past but that virus had done so much damage to my central nervous system Fibromyalgia seemed to be with me for the long haul. I started getting my supplements from Swanson Vitamins at a greatly reduced cost and applied everything I had learned about health and the human body. I changed the way I ate, slept, exercised and stressed. It was very hard but the more I challenged myself the better I felt.
My new doctor in Arizona was not okay with prescribing narcotics. He upped Lyrica to 450mg and my pain went away! I was off opiates and could not have been happier, for I was not one that enjoyed the high, just the pain relief. I started gaining epic amounts of weight on Lyrica, slept for the better part of two years and became addicted to mindless games on Facebook. When I told my doctor I wanted off Lyrica and Cymbalta because of the side-effects he told me I would never come off those drugs. He then referred me to a bariatric surgeon for gastric bypass to address the weight gain. From the first day of symptoms in 2005 until now, I had gained 70 lbs. I flipped out at the egregious use of medicine and looked for a new doctor.
Lucky for me I found the most amazing replacement. A Doctor of Osteopathy (DO) with the same status as a MD, but specialized and advanced training in the connected systems of the body. She got me off Cymbalta, which I was trying miserably to do on my own, by upping the Welbutrin dosage. The electric zaps stopped. So did the incessant crying and rage and anger. She got me off Lyrica and back on Neurontin. I lost 30 lbs. with exercise and diet. The pain never returned to pre-Lyrica levels and I never had to go back on Percocet.
I was on my way. My symptoms were managed, but now I had to look at the shambled wreck my life had become. Putting the pieces back together again was incredibly difficult. Sick for five years in the prime of my life really hurt. Surviving these non-terminal illnesses was the hardest thing I had ever done. I was a different person, so traumatized I fundamentally changed at my core.
My husband is both a glutton for punishment and extremely loyal, and for some odd reason still loved me. He rode that miserable roller-coaster ride sitting in the car right beside me. He screamed when I screamed, ducked when I ducked, shut his eyes tight as we were flung through pure chaos. He had been my rock, my strength and my paycheck. And he was completely neglected.
Much to my surprise I learned it is not the storms of life that are hardest to weather, it is the calm after. That is when everything falls apart, because it can. During the worst of it we clung together for pure survival. Well we had survived, but what was left, it was not pretty. It took us a long time and lot of work to smile again, but eventually it came. We got on the same page. I started a personal blog about my Fibromyalgia experience which was both cathartic and renewed a passion to write I had long since forgotten about. I started looking into graduate school and both of us exhaled a big fat sigh of relief. A five year blip on the radar, we were ready to slam that chapter shut, put it behind us and move forward.
Oh but God was not done with me yet! Not at all. A week before my 34th birthday I suffered from two hemorrhagic strokes caused by a completely random and rare freak blood vessel in the brain problem called Reversible Cerebral Vasoconstriction Syndrome (RCVS). A subset of Vasculitus and another damn syndrome. But this one they knew how to treat, and it has not happened to the same person twice, I was told.
So I spent six months on high-dose Prednisone and went steroid crazy. All the pain and fatigue I learned to live with went away! It was blissful. I was high on survivor’s life alternating with tantrums of "roid rage". A real peach to deal with, I was unstoppable. I felt a renewed sense of duty to the Fibromyalgia community as I marveled over all my health problems and the fact I was still standing. I published this blog and shouted from every rooftop how real and horrible Fibromyaliga is, how if one changes their lifestyle and demands decent medical care and does not give up, it can get better. I met a lot of people and realized my story was bad, but nowhere near as bad as it can get.
I started The Fibromyalgia Crusade and poured everything I learned, used to get the beast managed, into it. The quickest way I could see to help and implement any real change was to give the power back to the patients. Knowledge, information and confidence is power! And then I got off Prednisone. Bam! Another rock bottom. Fibromyalgia came flooding back. Once again I picked myself up by the bootstraps and kept challenging and expecting, never settling for the complications these illnesses afflicted me with. I decided I should teach a course in illness recovery. Hell, I had been through it enough times I should be getting an honorary PhD by now.
Today I am nowhere near the same woman who first got sick in 2005. I have been to war and back at least a few times. I am scarred and battle weary and worn to the bone. I am also alive and full in my heart and soul. I don’t eat processed foods, think fake sugar is the devil incarnate, along with it's evil twin high fructose corn syrup. I jog with my doggies a few days a week. I do yoga and meditate and pray a lot. I use only organic products on my body and swear by the therapy of an afternoon lying by the pool. I sleep nine hours a night and no longer work outside my home. I battle Shingles outbreaks with the frequency some battle the common cold. But I am alive and not in writhing pain or miserable misery or crippling cognitive confusion
I cannot tell you why I got sick, why my immune system stopped functioning. I cannot dictate a specific way to get better to other patients, for my ability to get my Fibromyalgia managed was like a patchwork quilt. A big huge mess during the process, but pretty decent looking when completed, and completely individual to me. I can only tell you I did it because I did not give myself any other choice. I could not live in bed and on narcotics for the rest of my life. I had a life to live and wanted to live it!
There are millions of stories out there like mine. Individual to the time, place and person, but the chapter reads the same. They too have been dismissed by doctors, refused pain management, told there was no hope. Some have it better, some worse, and still some have 85 other things wrong with them too. I have learned Fibromyalgia is an individual journey towards wellness. The same treatments don’t work for everyone, and this very real neurological disorder is not caused by the same reason in every patient, either. But perhaps the most important lesson I have learned along the way is life is completely and psychotically crazy and if you want to survive it, you gotta get crazier.
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