My Story...

My Story

This story is not a pretty one. It’s not a story of medical genius and the advancement of medicine in this modern day and era. Instead, I wish to offer up a true story that stretched over a period of two years. To give you a general idea of the patient, I am a 26 year old female, within my healthy weight range, and have no prior medical history. It began as many stories do around my house, with a bloodhound blocking my way to the bathroom in the dark. One wrong step and Bam! I’m reminded of my false invincibility and why I should have drank milk without Kahlua every once in a while. I fell over this horse of a dog, caught all my weight on my inward turned right foot, and a pop echoed in my ear. This one injury began a journey that would lead me through a medical hell and spit me out penniless in the end. Let me state now that I do not have insurance. I know this seems irresponsible and believe me no one has paid for this decision more than I, literally! But, when the bills come down to mortgage and food vs. insurance, the latter seems less pressing. The pain of the bloodhound fall subsided and I moved on with my life, swearing to remain loyal to my feline population in lieu of canine. The true beginning came about slowly, putting me on bed rest for a few days after lifting an incredibly large, heavy piece of crap antique fridge. I was convinced I was being punished by some interior design God for bringing an antique into my house. This is where I made my first trip to see a doctor, a medical doctor, one with a degree and everything. I bet he was even the top of his class. Regardless of his position among his classmates, he still opted out of conducting any medical tests for forming his expert diagnosis. I was labeled ‘torn SI joint’ in my file, written a huge prescription for anti-inflammatory meds, charged $125, and sent on my way. It became easier and easier to invoke this hip pain and I began to suffer from it almost constantly. My next trip took me to the ER. For all I knew, I was slowly becoming a paraplegic. This time, there were x-rays done. I was labeled ‘sciatica’ in my file, written numerous prescriptions for pain pills, muscles relaxers and anti-inflammatory meds, charged $2,000, and sent on my way. Shortly after, I was stepping up on a ledge, lost my footing, and had to step back to prevent myself from falling backwards. As I landed on my feet a familiar pop echoed in my head. The bed rest to recover kept taking longer and longer, especially this time. I decided to skip the family medical practitioner and go to someone who was truly an expert in bones; I was convinced he would be able to tell me what was wrong for sure. The orthopedic doctor took more x-rays, even though I insisted that I had just paid to have some done at the hospital a stones throw away from where his office stood. He bent my leg, asked if it hurt (uh, yea, that’s why I’m here), I was labeled ‘piriformis syndrome’ in my file, written a prescription for an even stronger anti-inflammatory, told to exercise to strengthen the muscle, charged $125, and sent on my way. So began my week of exercising, stretching, and more pill popping. I was determined to strengthen the hell out this muscle so that it would be beaten into submission. It was not beaten into submission, but I was. At this point I was convinced that these doctors didn’t know what the hell they were talking about and all their education had amounted to the ability to write multiple prescriptions while pretending to listen to the patient. I am all for multi-tasking but that soon became impossible for me as I went day to day choking down a ridiculous medicinal cocktail of who knows what. The pain from exercising never went away and placed me on permanent bed rest for the next 6 months. I decided to break down and pay for an MRI (another cool grand) to uncover the truth and stop flushing money down the drain on these ‘guessing’ doctors and start flushing pills out of my system. I returned to the “bone specialist” eager to get my results and a game plan. He informed me that I had a cyst on my left ovary (it is my right hip that is affected) and that all the pain was being caused by this. I began to cry as the words ‘ovarian cancer’ faded in and out of my mind. I immediately left his office, after paying $125, and called my next doctor, the gynecologist. I arrived in his office hopeful that once this was taken care of, I could then reclaim my life. I explained all of my symptoms to him, that I was debilitated, basically unable to walk any sort of real distance, and that I cried every single day in anguish. He told me it was ovulation pain, which all women have and it is no big deal. I explained in no uncertain terms that this was not freaking ovulation pain; I have been a woman slightly longer then just yesterday after all and have experienced ovulation for 13 years now. He stood firm that it was ovulation pain and then proceeded to tell me that I should learn to live with the pain. I professed that I could not and he said, verbatim, that it was either that or I should kill myself. Everything went silent around me as he continued to talk about whatever he was talking about. It suddenly occurred to me that no one was going to help me and that I would forever be treated as some hypochondriac who got her kicks out of going to doctor after doctor paying $125 a pop. I wept and watched this man whose job was to help me, completely annihilate any hopes I had of ever being better, of ever being capable of enjoying my life, and of ever being able to have a family. He eventually came up with the label ‘maybe a bowel problem’ because ‘recommended suicide’ doesn’t look good on paper evidently, charged $125, and sent me on my way. Thus began my dark days where suicide almost seemed like a plausible out if it would deliver me from the world of non-stop agony and watching life go by without me. I could have fashioned a noose out of dental floss, MacGyver style, if only I could get up! My wonderful husband, who has been suffering along with me this whole time, prevented me from a death via dental floss (too embarrassing he explained) and forced me to yet another gynecologist, This time, I opted for a doctor  with articles written up about her in medical journals. We traveled to the city to visit our next esteemed doctor and left guaranteed that the cause of my pain had absolutely nothing to do with my ovarian cyst. A fact, that she had actually proven, with medical tests rather than elevated righteous opinions. She wrote me a prescription for birth control pills, charged me $125, and sent me on my way. Having nowhere to turn, but back to where I had been, since at this point money was limited to say the least, I contacted the ‘bone specialist’ to inform him of my two visits to the gynecologists that had confirmed my pain was not coming from an ovarian cyst. His response was to inform me that it was the cyst and he could do nothing further to help me. At this point, to say I was discouraged would be the least of it. I spent the next couple of weeks sinking further into depression, as each day was exactly the same; wake up, stay in bed all day, go to sleep. It was a never ending cycle without a hint of illumination at the end of the long and lonely tunnel. I began to frantically search the Internet for my own diagnosis (I really had nothing better to do at this particular time) and came up with tons of possibilities. As I began to narrow my search, I settled on tendonitis of the hip and then went in search of the recommended treatment. Unable to find something satisfactory, my husband convinced me to take this information to his family doctor. He assured me that even if this doctor couldn’t definitively diagnose me he would at least listen to me and try to help, unlike the others. I went, not expecting anything, and explained to this doctor everything which I had been through and then concluded with what I thought it might be. He admitted that it was a little out of his league, but gave me two cortisone shots into my hip to see if it helped, by way of process of elimination. The shots were the most painful thing I had experienced thus far and I thought I would pass out or throw up from the pain of them. I was labeled ‘hip tendonitis’, written a prescription for pain pills, told to ice my hip, charged $125, and sent on my way. I waited for the icing and shots to run their course and heal me to where I could at least walk again, but nothing happened and slowly the pain became worse. Next, I decided to go to another hospital, thinking they could take some professional tests and actually help me. I could not live this way for much longer. I was treated like a crack head, no, worse then a crack head. I had to cry, beg, and plead for them to please do a cat scan, I knew something was wrong and they were my last chance. Reluctantly, the ER doctor agreed and sent me for the test. The results came back negative, I was labeled ‘hypochondriac’ in my file, told to go on a clear liquid diet until the pain resided, charged $4,000, and sent on my way. I opted out of the clear liquid diet, because even though I did not possess a PhD (for what little that degree was working for me in the first place), I knew instinctively that clear fluids would not grant the gift of mobility. So, that was it, I was no longer going to give these highway robbers dressed in public servant’s clothes my money, my hopes, and my trust. I went back to bed, where else, and remained there. I figured I was going to have to get used to a life that included me as a bedridden participant. I began to read book after book, offering me the only escape from the adventures that I would never experience. Then, as fate would have it, I was recommended to go to a natural healing chiropractor in town. I had nothing to lose and so I made an appointment. This appointment would forever change my life and open me up to a world that went against all that we are taught about medicine from the day we are born, literally. Actual tests were conducted, time was taken to listen to me and my concerns, and I was not turned away or treated as some druggie looking for her next high. When I lifted my shirt for her to examine me, she gasped at the large pocket of inflammation at the base of my spine. She could not believe that all these doctors had failed to even notice it. She had compassion for me and offered up all of the apologies that I would never receive from the medical doctors that so wronged me. I was tentatively diagnosed with herniated discs in my lower back. I began weekly treatments that would span a period of several months. Finally, after much pleading on her part, I broke down and forked over the $800 needed for a lower back MRI. She felt that if I were suffering from herniated discs that they would have had time to heal by now. As it turns out, she was right. The MRI caught just the top of the cyst and it was barely mentioned in the report at all (as if it were insignificant). When she went over the report she saw that everything was completely fine with my back and that the swelling had nowhere else to come from then the Tarlov Cyst located in my sacrum. I still remember that life altering phone call when I got to hear the news that I had Tarlov Cyst Disease and there was no definitive way to treat it. I was devastated for days afterwards, hell I am still devastated!  Thus began my journey to figuring out this disease and uncovering the truth that might lead me back to a renewed state of health. I don’t yet know the end to this story, but I know that I am now fully engaged in the fight of my life, for my life.

To be continued…