Genetically Defective

This is a highly self-censored version of my truth. It is such because we have become a society that prefers a comforting narrative over real science. People will continue to die until the scientific and healthcare communities become willing to pull off their blinders and acknowledge the elephant in the exam room, ask the necessary questions, and draw the obvious conclusions because that is the very basis of science we now choose to ignore.

When is cystic fibrosis not cystic fibrosis? When the genetic mutation that causes it is TFNRSF13B instead of CFTR. What is lupus not lupus? When the symptoms cannot be confirmed by bloodtests, and it's really Crohns. To those who are now laughing, rolling their eyes, or yelling, that's fine, it's not like I haven't experienced all those things from doctors before, but I say to you simply prove me wrong. You cannot because you lack the data to do so, and therein lies the problem. You cannot find answers when you are not even trying to look for them because it's easier to treat the symptoms than the underlying cause. For thirty five years, doctors did exactly that by shoving antibiotics into my ears or down my throat until they became utterly ineffective and my body could no longer even tolerate them. I have lived in a disgusting, rancid shell of a body riddled with infection enduring a lifetime of sickness and pain followed by eight years of suffering you cannot begin to fathom without the experience as what must be hundreds of doctors did nothing besides prescribe antibiotics, allergy meds, steroids, and thyroid medication while making me feel less than. I Must Be doing something wrong, not doing something right, doing something the wrong way. I Must Be whatever version of a stupid, lying, crazy, drug-addicted, alcoholic promiscuous hypochondriac with an eating disorder they want to tell themselves I am in order to justify showing me their door without treatment. Imagine living in the self-proclaimed greatest country in the world with the best doctors and state of the art technology, yet even with health insurance you are still unable to obtain adequate medical care. This is the reality of healthcare especially for those living in rural America and smaller states with too few doctors and too many patients, far too much apathy and little expertise in the area of autoimmunity. No matter what your opinion of my overall assessment, you cannot argue that what I have experienced in terms of medical care has been utterly abysmal. I am not alone. We are your friends, your family, neighbors, coworkers, delivery drivers, someone standing in line next to you at the grocery store in every state and country. Generations of my family have endured abuse at the hands of the medical professionals who were supposed to be their advocates. It is not exclusive to my family. Do a quick internet search for any of the symptoms mentioned below, scroll past the official resources until you get to the blogs and message boards where you will see people begging for help saying it's Not Just whatever label of a diagnosis they have been given. It's time the medical community acknowledges that these diseases are real and those who are afflicted deserve treatment. It doesn't matter what label is used; it is the same cause and effect. Call it Crohns, Lupus, IGAD, CVID, CFTR, or TNRFSFR13B, the result is the same. A genetically defective human being will face a life of misery followed by years of torment most people without the experience of cancer or end stage degenerative disease cannot comprehend. I firmly believe had I been prescribed mucous thinners and immune suppressors at an early age I could have had some semblance of a more normal life and been able to live to see the age of fifty. Instead I have been met with nothing but judgment, assumption, dismissiveness, apathy, patronization, and willful ignorance from those entrusted with my medical care as they cling to their It's All Environmental mantra. Loathe as I am to disclose personal information to anyone ever, I am putting some of the most humiliating details of my life here for public consumption because it needs to be known that people are suffering, voiceless and hopeless, powerless, desperate, and terrified. My name is Shana, and this is my story.

I was born into a household full of dysfunction, neglect and abuse. I received routine medical care through the age of four at which time I was sent to a pediatric cardiologist who determined I must just have a heart murmur, not a concern, no treatment or monitoring needed. I was put through the paces of hearing tests as well as what I assume was a GI x-ray with contrast, you know the one where you drink what tastes like liquid metal that make you feel like you need to urinate worse than you ever thought possible. This was due to chronic constipation, stomach bloating, swelling, and distension. The results were all relatively normal. This was the first time of many that a doctor shook his finger at me telling me to eat better and exercise more. Did I mention I was four years of age?! I was also referred to an ENT to have tubes placed in my ears and given an order for a leukemia test. Fortunately neither of those things ever happened, and from that point on I was doctor shopped, a term I can't remember if I made up at some point or actually read somewhere which I use to mean being taken to a brand spanking new doctor every time the last said the magic words of "tests" or "specialist". Looking back I now realize that was one of many instances of serendipity in my life because I was not put through the same invasive tests over and over that never would have given doctors the answers they wanted.

There were plenty of things about me and the way my body works that were never close to normal though they were my normal so I never really considered them to be problems. My nails have always grown into twisted claws if they were allowed to grow beyond my fingertips. My left thumb has always appeared to have been smashed at some point though that never happened to my knowledge. Mosquitoes swarm me given the chance, and their bites turn into welts almost immediately. My shoes always fit poorly because my feet are never the same size due to swelling that comes and goes. I actually had to stop wearing heels in high school since the heels would get hooked together because of the way I walk and I'd literally fall flat on my bum. I've always had what was referred to as birthmarks which were brown splotches or red bumps that would disappear after a few years. I was always told I bruise "like a peach" walking around black and blue because I was so clumsy having difficulty maintaining normal balance. My ears were pierced three times. The first two times they just wouldn't heal and stayed infected; the third time it took months, but they finally did heal until I would change earrings and I'd have to go through it all over again, didn't matter whether I used gold, silver, or costume. All of these things were either just ignored or blame would be placed on me, I don't pay attention, I don't do things the right way, etc. I've lived my life either so congested I cannot breathe properly or there was snot dripping out of my nose, there has never been a happy medium. For clarification, we're not talking about a few drops of snot here and there, we're talking about thick sheets of snot that didn't stop until it reached my shirt. For most of my life I couldn't leave my house without a pocket full of Kleenex, though as the facial swelling increased exponentially over the years that has become less of an issue. I was never allowed to have long hair as a child because I would move my head from side to side trying to sleep at night as I could never breathe normally due to the congestion. I would wake up with a so-called rat's nest when it started to grow out even a little. I just loved that bowl cut I sported until my mid teens, really helped me fit in at school. I also drool all over myself for the same reason and have done so as long as I can remember. Doctors gave me scripts for prescription strength decongestants back when they were allowed to prescribe meds based on patients' needs rather than public sentiment, but they did precious little to help the problem. Eventually I was prescibed allergy medication back when it required a script. It made me tired 24/7. They gave me a different kind, but it didn't really matter because the side effects were terrible and there was no improvement anyway. I was subsequently prescibed steroids and was sick even more than was my usual. After that they stopped bothering to even try to address the congestion as I seemed to become a lost cause. My lymph nodes were swollen much of my childhood which was only ever mentioned by doctors as a mere afterthought, but I have come to understand that the lymphatic system is something about which doctors have little understanding or education. Certain odors that do not bother other people have always been nearly intolerable to me like coconut, cinnamon, and mushrooms especially while cooking.

Before the age of five I had the displeasure of experiencing both impetigo and chicken pox. Upon enrollment in kindergarten, proof of vaccinations was required by law so I was taken to whatever doctor charged the smallest fee and got my shots. Couldn't walk for days. My left leg swelled to the point I couldn't bend it without crying. But it wasn't an adverse reaction, no, no need to file a report. The needle just hit the wrong spot. To this day I would love to know why it's always an issue with the left leg.

I was six years old the first time a doctor implied that I must be crazy after all of ten minutes, some scopes in my ears, and taking my temperature twice. I was crying and telling him that my ears and my head hurt really bad. I was told the pain was figurative not literal then he turned to face my mother across the room and told her it must be a psychological issue and that I should see a shrink which was ultimately nothing but a good excuse for my her to actively avoid providing me with healthcare. I left that office telling myself that someday I'd find a doctor who would fix me. Eventually I stopped telling myself that. I've begged every doctor I've ever seen to do something about the congestion that has plagued me since the day I was born. I've heard things like "Allergies are common" before the doctor walks away, take some Dimetapp once a day, take this allergy medicine, take that other allergy medicine, and my personal favorite that only made matters worse go buy a neti-pot. The chronic ear infections contined throughout my childhood. The migraines continue even now.

It was around the same age I came to the realization that I didn't get sick the same way other kids did. The migraines would hit me fast and furiously, at first lasting hours, eventually days. Even the flu at a time when the flu shot didn't yet exist wasn't gradual. I can remember one day I went to school feeling fine. By lunchtime I was hurling, shaking, my head pounding. There was never such a thing as mild illness for me. I quickly came to realize that doctors did not understand how to effectively treat me because they had no point of reference and evidently did not even want to try to find one. I began to fear that one day I would die from that lack of understanding, something of which I am now certain. A child whose age hasn't even reached double digits shouldn't have to wonder if she might die even after seeing a doctor.

The only time I was ever taken to a dentist for a cleaning was around the age of eight. I started bleeding profusely almost immediately. The hygenist told me that if I took proper care of my teeth I wouldn't be bleeding so much. That was a lie though she probably didn't know it. Eventually she became so flustered she threw her arms in the air and told me they'd have to finish another day. She then looked me in the eyes and pointed her finger at me saying, "You will come back" as if an eight year old child has control over such things.

It was around the same time that I was taken to a chiropractor for my migraines which were not considered migraines at the time, a diagnosis that would not come for more than three decades. Yeah, good judgment all around there. I was stripped of my clothing and had all my little girl parts measured meticulously. Afterward I was put on display still buck naked for my mother and anyone who happened to be walking down the hallway outside the open door to look me over. She was told my body was out of whack in much more clinical language. I should avoid eating dairy and chocolate. It now strikes me as incredibly ironic that a psuedo medical professional was more willing to acknowledge and attempt to treat my health problems than doctors ever were.

I can't really remember how old I was when I went camping for the first and last time, maybe eight or nine. The first night I was there they had blankets spread out in front of a campfire. Within minutes I started coughing. My eyes started swelling, and my face felt like it was on fire. When I couldn't stop coughing they had my group move the blanket a little further from the campfire which didn't help at all. Eventually I was sent to the nurse station. I was told to stop being such a big baby, it wasn't like I had asthma. The next night at campfire time I went with the little kids to do arts and crafts. It was better than choking I suppose.

My entire childhood was filled with chronic ear infections. They finally stopped when the chronic upper respiratory infections started around adolescence. Those turned into chronic sinusitis in my late teens. Doctors did nothing but provide me with an endless supply of antibiotics.

I was ten the first time a doctor yelled in my face, "What kind of drugs do you do?" I couldn't have identified a drug had he been holding some in his hands. I was a child in a world much more innocent than it is today, a world without cell phones, internet, even cable TV in the majority of the state where I lived. I laughed at first thinking he was joking until he shouted even louder. When he finally stopped yelling at me, he sat there snorting as he wrote fervently. When I got home my mother grilled me about what I said to the doctor so I assume he called her. This was about the time the ear infections stopped and the upper respiratory infections started. I can't remember for sure how many times I was hospitalized as a child. Three I think. What I do know without question is that no one would tell me why, and I didn't understand why other people would get the same type of infections and be okay, but I wouldn't. My questions were ignored or answered with a non-answer, even when I asked where I was being taken or what would be done to me. The last time I was like fifteen, not exactly a child who should be patronized or whose questions should be ignored. Eventually I learned to stop asking and just go where I was told to go and do as instructed.

It was around the age of twelve when I was taken to a dentist for a second time at the insistance of a school nurse. I was running a fever and the side of my face was swollen because a second tooth was growing in on top of the one that was already there. My mother took me to the cheapest dentist she could find. They stuck what had to have been at least half a dozen needles in my mouth. He left me sitting in the chair for half an hour or so then came back in the room and said I looked tired so maybe I should come back another day. I was just like I'm not going through this all over again so just do it now. It hurt like hell. After fifteen minutes of him trying to get this tooth out without success I was screaming. He walked out of the room without a word. The hygienist or assistant or whoever she was looked at me not even beginning to know what to say. He returned momentarily with my mother recommending that she take me to an oral surgeon because he could not get my mouth numb. She proceeded to throw a fit telling him she wasn't going to pay twice for the same thing and that he wasn't getting paid if he didn't do the job. He then placed his assistant on one side and the receptionist on the other. Each of them held one of my arms and legs. The dentist ended up straddling me on the chair before finally extracting the tooth. Quality dental care here in Delaware.

Around that time I had what I can only assume was a kidney stone. Didn't know what was happening at the time. I was going to the bathroom just fine right up until I wasn't. Kind of like the old Powerball machines that sucked the ball up to the top. Hurt like hell, lots of blood. I wasn't taken to the doctor but instead was instructed to go see if our neighbor had any cranberry juice.

My entire preteen life was spent listening to nagging about my posture. Look people in the eye when they are talking to you, stand up straight, don't slouch. Apparently the thought never occurred to anyone to ask why. I can't remember a time when it wasn't painful to hold my head up like a normal human being, and as the years passed the pain only increased. Today I look like an elderly woman afflicted with osteoporosis.

Just prior to becoming a teenager, I was told that it was suspected I had an eating disorder based on the fact that my weight was not in the average percentile, a fact that had been true at age 11, 10, 9, 8, 7, 6, 5, 4, 3, 2, 1, and 0. That's the level of common sense that exists within our healthcare industry. That diagnosis still haunts me to this day as it allows doctors to write off a multitude of symptoms without actually addressing them.

By the age of thirteen, maybe fourteen, I was so traumatized at the thought of having to see a doctor, I had a full blown panic attack in a doctor's office when I fractured a toe. I had no idea what it was at the time, only that I felt like my heart was racing for no reason until the room seemed to start spinning. I was told to just go sit in a chair until I calmed down.

I had mono when I was fifteen. Even teachers acted like I must be a raging slut even though I had never even kissed a boy for real. My noisy stomach was the bane of my existence in high school. I started carrying contraband in the form of cough drops in my purse so I could suck on that when the classroom was especially quiet. Didn't help much, but I guess it was better than nothing. I started having panic attacks in high school as well whenever I had to give any type of presentation or read out loud in front of a class. Still didn't really know what they were, I just felt like I was having a heart attack and couldn't speak like a normal human being. The upper respiratory infections turned into sinus infections in my late teens. They just continued to pump me full of antibiotics and send me on my way. I was finally referred to an allergy doctor, but I waited because I was finally becoming eligible for insurance at work. I was also eighteen the first time I saw a gynecologist. It was the first time I heard a GYN tell me I have an infection. I was skeptical and told her that can't be right. She responded by stating that perhaps I just wasn't aware of it hitting that nail squarely on the head. You don't know when your normal is not the same as everyone else's. Every year after that I would be told the very same thing and prescribed more antibiotics until the labs came back. I've spent the rest of my life trying to find a way to explain to them that infection is my normal. They still don't get it. When the labs come back saying it's not vaginosis or nitis or vagi-what ever, they tell me it's okay. Only it's not. I asked a pulmonologist last year shouldn't there come a time when simply having a body full of infection becomes a concern even if it's not a certain type of infection. She didn't even try to answer the question, just told me she was writing down the diagnosis as being asthma because that's what she thought it was after twenty minutes on the phone.

When I was in high school, the stomach noise couldn't be ignored anymore. I was an outcast on my best day, but having an entire classroom full of people laughing every time the class became silent while studying or taking a test was humiliating. My legs falling asleep while I was sitting started to become an annoying problem which only got progressively worse through the years.

The pain in my calves started when I was eighteen. My coworkers told me it was the flooring at work, that everybody just had to deal with it. My legs would cramp and just stay that way for days on end. That didn't get any better for another twenty years. When I began to work on the mess in my mouth, a result of eighteen years with hardly any dental care, I quickly realized the massive bleeding would always be a problem with every dental procedure. It also didn't take long to figure out that novacaine didn't work on me the way it did everyone else. Every single time I sat in a dentist's chair they'd pump me full of needles, we're talking upwards of a dozen including that brain crunching roof of the mouth thing. It never lasted long enough to get the work done. My dentist got certified to use a new -caine, lydo, lina, something I can't really remember. He was the first in the area, state maybe. He said he was hoping it would be more effective for me. His hopes were dashed very quickly.

Got my first flu shot when I was eighteen as well. I was sick for a couple days. The next year I was sick for three days, even worse than the year before. The last flu shot I received was at the age of twenty. I was in bed for the better part of a week. Couldn't eat, didn't shower, could barely crawl to the bathroom at times. I'm told the flu shot can't give me the flu, it's all in my head. Well, that's probably true, but it can sure as hell make a person feel like they have the flu with all the effects aside from the actual nonstop tossing cookies.

When I finally qualified for health insurance at work I scheduled the first appointment with a doctor that wasn't an urgent care sort of thing. It was a tiny room, the exam table was directly in front of the door. The doctor's desk was beside the door so when he wheeled his stool over he was positioned in front of the only exit. He shook my hand then placed his on my thigh. I became very uncomfortable and kept moving away as much as possible. He was asking me general questions, repeating my answers, and rubbing his hand further up my leg as he did. I stared at the one window in the room wondering what to do. I can't remember leaving the room, only running through the office and out of the building. I saw on the local news a lot of years later that he had been arrested for assaulting a female patient. Kind of wonder how many times that must have happened over the years. Tried to find a female PCP. At the time there were only maybe three in the state, none accepting new patients. One offered to put me on a wait list, never heard from them again. After that it was back to urgent care for the most part because I just so terribly uneasy being alone in the same room with a male doctor.

I stopped wearing sandals in my early twenties because the veins in my feet and ankles were becoming so prominent they were embarassing. The charley horses in my legs that used to be sporadic became much more frequent and intense. In my early thirties I moved into a rental house with a basement full of mold though I didn't know it at the time. I was sick for months, the migraines were relentless. Every. Single. Day. The pain in my neck that had been getting progressively worse my entire life became more of a red hot burning that just ordinary muscle pain. It started traveling down into my upper back frequently, always in direct proportion to my level of congestion. The second winter I was there the sinusitis got really bad. It wasn't long before I was coughing up bloody mucous, having difficulty breathing, and heart palpitations. I assumed it was probably walking pneumonia since that's what my dad was told when he had the exact same symptoms. Had no health insurance at the time so I just tried to get through it as best I could. It took months, but I finally started feeling better or at least back to my version of a normal. It wasn't too long after that I started feeling tired a lot, more than I should have been. That never went away. I had a significant amount of hair loss as long as I can remember, but it got to the point where you could see nothing but skin at the crown of my head. The hair loss escalated around 2010, and my hairline started receding. The upset stomach that had always been part of my life intensified as did the stomach bloating. I started being plagued by heartburn and indigestion regularly. A small area of my face developed what appeared to be a rash that became permanent to this day.

In my mid thirties I was told I pass a test for autism, or fail I suppose depending on your perspective. I should go see someone to get a diagnosis. I see no point in yet another label that would serve no useful purpose. I learned to deal with being different a long time ago. Therapy could have helped me as a child had obvious signs not been ignored, but not as an adult.

In November 2012 my right hand became swollen. I was always hurting myself without realizing it so I thought it was just muscle strain or something like that. It went away but came back with a vengeance the following month. It was hurting from my elbow down to my wrist. I tried to make an appointment with my PCP, but since I never requested an insurance card with their provider information printed on it I was unable to do so until I had that card in hand. So I called to get a new card and waited while the pain was getting worse everyday. The fingertips on my right hand starting to become discolored, looked red much like a burn. I went to urgent care and was told I needed to see my doctor because apparently having that doctor address the issue wasn't an option. OK. The fingertips started turning purple, almost black. Went to the hospital. After a variety of tests and waiting so many hours I lost track, I was told I have Raynaud's and could go home. No pain medication, nothing for the swelling, just go home. At that point I could not touch anything without so much pain it would bring me to my knees. When I was finally able to see my PCP I was then referred to a cardiologist and rheumatologist all of whom looked at my hand once a month and said things like, "That looks painful." The cardiologist was a real piece of work. The last appointment I had with him he began yelling that I hadn't gotten the bloodwork he ordered last time and something to the effect that if I wasn't going to be an active participant in my healthcare I need to find another doctor, blah, blah, blah. I sat there quietly until he was done ranting then told him he should probably check with the lab for the test results. He did so and unapologetically informed me that it was the lab's fault for sending them to the wrong doctor. The rheumatologist wasn't any better. He ever so nonchalantly informed me after a few months that I needed to be prepared because the only option for gangrene was amputation. He did, however, ask my permission to write a medical journal article about me. So there's that. The only people on this planet who understand what Raynaud's is like are those who have experienced severe frostbite. Think of it this way-put your hand in a bucket of ice then when every fiber in your being is telling you to yank it out have someone forcibly hold it there. For nine months. It is unlike any other pain. It's not just physically touching things that hurt, a slight breeze or a hair is like someone stabbing you. I could feel blood slowly dripping inside me from my wrist to the bloody open wounds that used to be my fingers. I was so close to being nonfunctional. I figured out very quickly that someone who is right-handed and is trying to hold and use eating utensils in the left hand will end up with precious little food that makes its way into the mouth. Taking a shower was an all day project that always ended with me curled up in fetal position wailing for hours. The skin tightening after it was wet was more painful that I can effectively describe. There was no doubt in my mind that I would have been better off dead than living that level of misery, but I had two sick dogs who had no one else to take care of them. They were probably the only reason I persisted with what was the daily torment that became routine. When the sinus infection that never goes away got worse than usual I absolutely couldn't handle any more pain so I went to urgent care and was prescribed antibiotics. The very next day the fingers started drying out beginning to heal. Mr. Rheumatologist said it's just a coincidence, refused to even consider the possibility otherwise. That was when I truly began to understand doctors' denial of that which they do not understand.

As soon as the Raynaud's hit me like a ton of bricks and I thought it couldn't possibly get any worse, it did over the course of only a few weeks. First my menstrual cycle became erratic, then there was heavy bleeding and abdominal pain, then came menopause at the age of forty. On the bright side I went through perimenopause in a matter of months at most. My eyesight declined suddenly and drastically. I've always had astigmatism which was never really an issue, but then all of a sudden I couldn't even read cooking instructions on a frozen dinner. My PCP told me to go see an eye doctor because I'm apparently not intelligent enough to think of that myself. When I explained to her that my insurance did not include vision coverage, I got no response. My teeth which had always been an uphill battle to maintain started breaking on a daily basis. My PCP told me to go see a dentist because I'm still apparently not capable of such logical thought. When I asked her if she thought this was all a bit strange, perhaps symptoms of an actual medical issue, I again didn't get a response. I developed a severe case of hemorrhoids for the first time in my life. Never knew how painful that could be. Lost at least twenty pounds in a few months time, probably had a lot to do with not being able to eat like a normal human being. My skin became thin, lost elasticity, and dry to the point of cracking and bleeding. What they like to call that lifelong chronic constipation went off the rails. Up to that point I would always go from one extreme to almost the other, not being able to go to the bathroom for days, then going more than a person should. Didn't have that problem anymore because it just became what one would expect from the term chronic constipation. The fatigue I had been battling for years got even worse. My hair started to thin worse than ever, hair ties started falling out because there just wasn't enough hair to hold them in place. I started to experience numbness in my upper arms for no apparent reason. I became forgetful. I began to have very little strength in my upper arms as well. The congestion got so bad I could no longer sleep lying down. Had a mountain of pillows, a wedge, and an armchair bedrest to try to keep myself as vertical as possible. Being cold all the time became my new normal, especially in my hands and feet. I began to have difficulty swallowing, but not all the time, it would come and go. Started getting winded without any reason. I was apparently anemic, had a B12 deficiency, and neutropenia. No one actually told me this, but the practice started generating exit paperwork that included the diagnoses noted in one's medical chart. Started taking supplements to get those counts more normal. Eventually I came to believe that all of the lifelong issues that had been ignored and untreated simply reached a tipping point where my body could no longer keep fighting on all fronts as my immune system naturally declined with age.

In the spring of 2014 I was putting away laundry one Saturday afternoon when all of a sudden there was this searing hot pain under my right eye. I froze like a deer in headlights. Didn't say hey, could be stroking out here or having a heart attack, just stood there in front of a bureau waiting for it. It felt like a miniature lava flow ever so slowly moving down my face until it hit my cheekbone then just dissipated. I probably stood there for ten minutes waiting for something to happen, but nothing did. That night I slept, actually slept lying down breathing comfortably for like ten hours and woke up refreshed, not feeling sick for once in my life. I couldn't wait to turn in the next night hoping or maybe wishing to have a good night's sleep again. I slept soundly. When I awoke, I couldn't see, it seemed to be taking forever for my eyes to adjust to the light in the bathroom. When I looked in the mirror I saw that the right side of my face was so swollen my right eye was almost completely surrounded by my own skin resulting in the loss of vision. My face felt hot, almost hard, and I felt sick in general. Called my partner, said I should probably go to the hospital. When he showed up five days later, yeah, five DAYS, the swelling had gone down quite a bit. The ER doctor told me to go to the dentist, just a dental infection. I told him it started under my eye not in my mouth. Didn't matter, I was told to get some amoxicillin and go home. So I trusted that he knew better than me. My mistake. Went to the dentist and ended up getting all my bottom teeth repaired while consciously sedated. They didn't seem to mind that the wrist monitors would not register anything. I soon found out that the conscious part was very accurate, just not so much the sedated. I was paralyzed but fully aware of my surroundings. Tried forever to move my hand, but when I finally did no one noticed. I was just started to force my eyes to flutter ever so slightly when the heart monitor started sounding an alarm. Always a great experience at the dentist for me without a doubt. I expressed my concern that he didn't want to prescribe any antibiotics afterward. I was told I didn't need them. That was absolutely not true because the sinus infection that started all of this only worsened. I was eventually prescribed amoxicillin, the doctors' go to cure all which was about as effective as a bottle of Tic Tacs. Then I was given metronidazole which had me curled up in fetal position for days with stomach and abdominal pain. I was put back on amoxicillin because that made perfect sense, then when that didn't work again, clindamycin which made me feel like I was having a heart attack, couldn't eat even one bite of food or a sip of water because it felt like my insides were on fire. After one Skittle I was seriously considering a trip to the hospital. I gave up, decided I would either get better sooner or later, or I would get so sick I wouldn't be able to argue when someone took me to an ER. It took months to get back to my normal.

After my last PCP forgot my appointment while I was in the throes of Raynaud's, I found a new doctor. Probably would have gotten over the mistake of the previous had the person at the front desk not treated me so horribly. Can I help you? I already signed the register. You don't have an appointment, and we're not seeing patients now. Yes, I do. Then I panicked thinking I wrote it down wrong. Went to the car and found the appointment card. Showed the woman her own handwriting with the date and time. She then became apologetic saying they had changed computer programs and must have missed it. The new PCP was such a special sort of ass. The first time I was there he yelled at his assistant, nurse, whatever she was for marking symptoms of both congestion and runny nose. I finally told him that I was the one who told her to check them both because I am congested all the time except for when my nose is running to my feet like when I go outside. He asked which was true right then so I told him I'm congeseted. He told her to mark that and only that because he's not worried about symptoms I'm not having that day. Really. The second visit with him, I sat in a frigid exam room wearing nothing but a thin gown while he ate lunch in the next room as a salesman pitched his paper products. Yeah, the walls were just that paper thin. When he finally moseyed into the room, he gave me the label of fibromyalgia as I sat there protesting that fibromyalgia pain is not in direct proportion to one's level of congestion on any given day. He never stopped writing, didn't look up, no response. From that point on every time I complained of pain doctors would say well you have fibromyalgia so that's to be expected which I knew would happen. I was also told that my thyroid wasn't "right", that I'd have to see an endo. At that time I couldn't even remember enough biology class to be able to say for sure it was in the neck, certainly not its function. When I asked him what the thyroid does, I was ignored again. So I rephrased the question. Still no response. His assistant finally looked at him and said something like "I think she wants you to explain to her about her thyroid." So he finally looks at me and says, "Pep." I think the look on my face spoke for itself. He then said, "You know, energy." then proceeded to walk out of the room. I was also diagnosed with nasal polyps and given yet another prescription allergy medication as well as Ipratropitum. I was told to start taking them both immediately since I had to return in two weeks. I knew it was a bad idea since there aren't many medications that don't give me severe side effects, but I did what I was told and lived to regret it. I was sleeping ten hours a day. Even when I wasn't asleep it was all I could do just to move from one room to another before having to sit and rest. I had no balance, was falling over like a freaking flamingo while trying to put on shoes. A few days before my next appointment I called and said if they wanted me there as scheduled I needed to stop taking the meds since I didn't know which was causing the problems and I couldn't drive in that condition. He didn't even address the medication issues at the next appointment, only told me I was being referred to an endo and a rheumatologist again. Whatever, I decided I would be going home and looking at the omniscient insurance company list of approved doctors.

On August 8, 2016 I experienced momentary loss of muscle control for the first time. I was getting an x-ray and being asked to hold my arm folded in the air in a very unnatural position. I almost punched the poor lab tech.

For some dumbass reason I still cannot explain I did not protest having to see the same rheumatologist as I had before for the Raynaud's. He gave me an order for physical therapy and started to leave the room. I said, "Wait. What are going to do to find out what is causing the fibromyalgia?" He said, "That's not my job. My job is to manage your pain." And therein lies the problem.

About six weeks after being told I'd be contacted about the endocrinology referral, I got an envelope in the mail with the return address being my doctor's office. Inside was a referral to a practice in Dover at 8:50 a.m. When I was initially asked where and when this appointment should be made, I said anywhere except the city of Dover, and it would have to be in the afternoon with the bus schedule being what it was at the time only stopping nearby exactly twice a day. So I call the endo office and tell them I need to reschedule. I was told that they were "doing a favor" for my PCP agreeing to see me at the scheduled time so I'd have to wait another six months if I wanted to change it. I told them to cancel it altogether. Got my participating provider list from the insurance company and started making calls, lots of calls. I finally found one practice about 45 minutes away but on the bus line who had just added a doctor so if I was willing to see that one, they could schedule me in six weeks. They only needed my medical record from my PCP before scheduling. So I called my doctor and asked them to do that. Waited a couple of weeks, hadn't heard anything so I called the endo office. They never received my medical record. So I call my PCP again. They apologize and say it will be sent over right away. I wait another couple weeks and call the endo office again, this time saying I probably know what the answer to the question will be, but I'd like for them to check anyway. Again, no records were sent. The thought occurred to me that if I went to my doctor's office in person and requested my medical record, they were supposed to have to give it to me. Pretty sure I read that somewhere. So that's what I did. They told me that the doctor would have to sign off on it so I told them I'd wait. They said you don't even have an appointment, but all these other patients sitting in the waiting room do as if I was selfishly asking to be given priority asking for a simple signature. So apparently they can't break the rules by refusing to give a person their medical record, but they can just not do what they're supposed to do. I ended up leaving figuring once I changed providers the issue could be addressed. I couldn't have been more wrong.

Four and a half months after waiting for that endo appointment I get a call from the office telling me that it was cancelled because there was no doctor available to see me that day. Let's reschedule in six months. When I complained that I had already been waiting forever I was told I could go to a different location and be seen in three months. Not long after that I get another call telling me the doctor was leaving the practice and that I'd have to reschedule. I didn't bother.

After forty-five years of complaining of head congestion the new doctor surprisingly order a head CT, but Highmark refused to pay for it. So I asked for an appeal. A very nice woman called me to schedule a hearing. I was asked if I had a lawyer. Lawyer? Do I need one? No, we can provide you with a medical professional to act as a representative, or you can just represent yourself. If you request a rep you won't get a hearing for approximately six months. I told her I wasn't at all comfortable with the idea of self-representation, but I didn't want to wait that long and couldn't afford a private attorney at that time. I figured even though I had to talk to a room full of doctors, they were still human beings and if I just give them the facts they would understand. Biggest mistake ever. I was unable to obtain much in way of documentation because all of my records from childhood had already been destroyed. It was both stunning and incredibly upsetting because the truth didn't matter, only how many pieces of paper I could show them. The few doctors who had treated me and were still practicing informed me that I would have to go to their offices up to two hours away and sign release forms. I began to realize this appeal was a futile endeavor. And it was. A decision to deny was made in a few minutes time. In the meantime I get a call from my doctor's office telling me that my annual bloodwork looked fine. "You're perfectly healthy, see you next year." Wait, what about my thyroid numbers? They're not too bad, not something we would want to treat. Apparently a TSH of 6 even with the multitude of symptoms making my life miserable was not a concern. I immediately scheduled another appointment. Told the doctor that all of these symptoms being blamed on thyroid function needed to be addressed if there was no intention of treating the thyroid problem that they consider not to be a problem. I was told that some people who have eating disorders like to be prescribed thyroid medication. Took me a minute to process that and get the point. I said I didn't care what or if medication was prescibed, but the problems needed to be addressed somehow as I sat there with visible scabs that used to be lips, my hands and feet cracked and bleeding. I was painful to open my mouth to eat, to walk, to touch things that required any kind of grip. My hands and feel were swelling a lot especially at night, the shortness of breath got worse than ever, and the numbness in my lower body when sitting escalated. There was no attempt to address any of these things. It was like talking to a wall with a doctor just staring back at me. I was used to there being a lot of popping noises in my ears when the congestion got really bad, but it got to the point where there would be noise in my ears for days at a time. The sound of bubblewrap being popped would be an accurate description. After forty-four years that finally stopped only to be replaced by an unending high pitched screeching. The best comparison I can make is the sound that used to be broadcast on TVs back when stations would go off the air in early morning hours. The doctor tells me it's called tinnitus, that a lot of people have it. Apparently not a concern except learning to live with it is like listening to nails on a chalkboard that just won't go away. Visibly annoyed, this person who was not even a doctor but an assistant tells me there's a presciption at your pharmacy and walks out of the room. Unfortunately there was no followup testing or appointments. By the time I was due for another physical, I was close to crisis level with a TSH of 19.28. I was coming as close as one can to passing out every few hours, but the endo I eventually saw told me I can't say I was really passing out, just overly fatigued. Apparently one doesn't pass out if one can be aroused. As if anyone would try to wake a person that exhausted just to see if it could be done. The thyroid medication did improve my skin problems, swelling, fatigue, and shortness of breath, but my stomach bloating worsened significantly. I had always had hiccups a lot, but I began to experience that on an almost daily basis. I started having a lot more muscle spasms in my legs than usual, and the numbess in my legs when sitting got even worse.

I was given a tetnus shot without warning as I had no intention of agreeing to it in 2018. I kept telling the nurse who administed it that it was burning, it felt like she was shooting fire into my vein. She looked at the needle, said it's where it's supposed to be and shrugged it off. After a few hours I was beginning to think it must be getting infected because I couldn't move my arm it hurt so much, and the itching was as bad as a serious case of poison ivy. That lasted for five days. I then had a particularly miserable sinus infection that winter which spread to my chest. It just felt raw, and I developed a cough that never went away. My dog began acting strangely around me, and I didn't understand why. I wrote it off to the fact that he was old and not in the best of health himself. Every chance he got to get near my face he would circle his snout around my mouth as if he were breathing something he really wanted to keep sniffing. Weird, right? I later found out this is called alerting. Dogs (usually trained) are able to alert to many forms of cancer, some cystic fibrosis. I firmly believe they can also alert to Crohn's assuming I do not have some type of undiagnosed cancer which at this point would not be outside the realm of possibility though to be honest.

It was also in 2018 that I experienced two more instances of muscle control loss. The first time I was walking the dog when she pulled the leash out of my hand and began running down the middle of the road dodging traffic while I trailed behind half crying half yelling. In mid-stride my left leg just didn't move, and I went crashing to the ground on my knees so hard it tore a hole in my pants. The second time I was simply walking across the room when my knees buckled. I was on my hands and knees afraid to try to stand again for several minutes. It was a particularly hectic and stressful day. It only seems to happen when I am in stressful situations.

A doctor discovered ulcers in my throat during a routine exam in 2019. I cannot count the number of times since then I've been tested for AIDS. I cannot even imagine what it must be like to be an AIDS patient in this state. As soon as they think a person may be HIV positive, they take a step back and can't wait to get out of the room.

My eyes started hurting in 2019 as well. I hadn't realized that eyes could be painful without some type of injury or irritant. One of those things I guess you never really consider until it happens. Toward the end of August I realized I had not been urinating nearly as much as usual. One night before I went to bed the thought occurred to me that I hadn't gone to the bathroom all day. It was particularly hot so I thought maybe I was just not drinking enough water because I'd been busy. So the next day I'm drinking all the water I can tolerate and still not going to the bathroom. After a few days I call the doctor. The stomach bloating became unbearable. My entire body became swollen from the waist on down. There was nothing but pain in my stomach and abdomen. Eating and drinking only made it so much worse. On September 11th I was seen by the doctor who dipsticked my urine and told me that I'm perfectly fine and to drink more water. It seems that I'm the only person thinking that a person drinking x amount of water on day one who is urinating y amount and is drinking x amount of water on day two then urinating 1/8y amount doesn't need more water so much as medical care. So I asked her how I was supposed to do that when I couldn't eat or drink anything without terrible pain. Take Prilosec, that will solve all my problems. That day I waited nearly an hour in the exam room before the doctor came into the room obviously stressed so before I left, I looked at her and asked, "Are you sure?" providing the opportunity to take the time to reconsider the facts. I was just told I was fine. My urine transformed from a generally dark gold color to a pale yellow almost clear at times. My stool began to have a splotchy light brown marbled appearance. The fatigue worsened, and I began to feel dizzy or disoriented sometimes. The numbness in my legs got so bad I couldn't sit for longer than a few minutes in the same position. The heart palpitations became more like my heart racing pretty much all the time, always feeling like I was on the verge of a heart attack.

I decided to talk to my doctor and refuse to accept the usual blow off answer about the antibiotic issues I had after my last trip to the dentist considering how desperately I needed to return. I was told I just had a bad reaction to a medication, not uncommon, not a concern. Failed to complete that mission so I just kept telling every doctor I've seen since the same thing given the opportunity without being able to get the answers I needed.

I had a chest CT in January 2020 since they really couldn't see much on the last one as there was so much congestion making it difficult to read which is the norm for every image ever taken of me. They found a nodule, but it's OK. We'll just watch and wait for it to get worse. Three years and four months after first being referred to an endocronologist that miraculously happened. I was diagnosed with Hashimoto's in February 2020, another autoimmune thing related to the hypothyroidism. I saw a pulmonologist who decided after one short phone call that I have asthma. I was told that there are only certain types of infection that are concerning. Shouldn't there come a time when it is concerning that a person's body is full of infection that never goes away no matter what the type? There was no attempt to answer that. "I'm writing down the diagnosis is asthma because that's what I think it is." When I go to the pharmacy to pick up the inhaler I was prescribed, the pharmacist fortunately advised that it contained a medication that had previously caused a bad reaction, a fact the doctor should have been well aware. I was planning on trying to remedy the situation when I got my latest blood test results. That never happened. After waiting weeks for that and making a couple of calls about it, I was just told by the office staff that I was being referred to an immunologist without any further explanation. He actually took a thorough medical history which is rare right up until he lost all interest upon hearing about all my GI problems. Said that he'd take care of the inhaler situation. Reminded him of that the next month when I was told it could be IGG, could be any number of things really. Apparently a pneumonia shot will solve all my problems. Still waiting for an inhaler I can actually use. I was also referred to a neurologist by my PCP who seems to be more of a referralist than a practitioner. I was given an appointment with a nurse practitioner which is also pretty much the norm around here anymore. You don't get to see an actual doctor unless someone else thinks it's warranted, and you wait a minimum of six months, generally much longer for some specialties. I was actually asked why I decided to seek care for headaches after twenty-one years. I explained that an HMO patient in this state cannot just decide what specialists to see. After attempting to communicate that meds would only worsen GI issues which were not being addressed, I was told that medication was the only option. No tests or anything, just the usual take a pill and go away mentality. Then there was the five minute soliloquy of a rant about not being held responsible for what other doctors have or have not done. Complete waste of time with one of the most arrogant, condescending, and verbally abusive doctors I've ever had the displeasure of meeting.

In 2020 my primary care physician insisted I get that pneumonia shot like the allergist told me to do. I told her that wasn't happening because every shot I've ever been given didn't work out so well for me. She said that it wasn't like the flu shot, doesn't even produce mild symptoms. Before I could even give it some thought she had her nurse sticking my arm. I have to give credit where it is due. For the first time in my life I actually felt what I can only assume is normal for most people. There wasn't the ususal pain or feeling sick all the time. Lasted for all of a day and a half and didn't really enjoy it since I was waiting for the other shoe to drop so to speak the whole time, but it was a nice experience.

On April 14th I got sick only a lot worse than usual. After three days of the worst migraine ever, being so cold I was visibly shaking and couldn't stop, feeling like my chest was so tight I could barely breathe, a rash had developed on my forearms that looked like red spiderwebs. My blood pressure and heart rate were soaring, couldn't manage to eat anything except one bowl of soup. Big mistake. I went to bed afterward, and I started feeling like someone was cracking an egg on my head, inside my head to be exact. I than saw my dead father or maybe just felt him there, I really don't know, my thinking was becoming very muddled. I don't think you can technically call it an hallucination since I was fully aware I was not really seeing a dead person. I saw scenes from our lives, everyday mundane stuff only it wasn't nearly as meaningless as I once thought. It was like catch up clips shown before a new season premiere of a TV show playing in my head. I've come to understand that when a person is swirling the drain their subconscious does one of two things. It either shows them that light at the end of the proverbial tunnel everyone is wishing to see, or it grabs you by the throat, slaps you in the face and tells you to pay attention to what you already know. Until that day I had never considered the fact that my health was a mirror image of my father's. So I began to think about why two family members could possibly be afflicted with the exact same problems, numerous as they were. That is when I began to explore the idea of genetic factors. I realized how serious the situation was when I took a drink and started choking. I was gagging and unable to breathe until I grabbed a spoon, shoved it down my throat, and turned it sideways. I then began dumping the kitchen drawers out looking for a straw I knew full well we didn't actually have. As I sat on the kitchen floor screaming and sobbing I came to the conclusion that I was not thinking clearly and decided to call 911. By the time the ambulance got here, it was becoming very difficult to answer questions. I began speaking in phrases unable to complete full sentence with my thoughts being so clouded. Exactly what one would expect to see in a person with a concussion though that was not the case. The entire ride to the hospital I was trying to figure out what my blood pressure normally is. Once I got there, the rapid fire questions came faster than I could possibly answer them as they removed my clothing in a room full of people. They ran some bloodwork, took an x-ray, tested me for COVID and told me to go home. I tried to explain to the doctor who was reluctant to even enter the room how bad the stomach and abdominal pain was. He finally stepped inside, formed his hand into the shape of a claw machine grappler, pressed on my stomach then reiterated that I was being released. I really do not understand how I am still alive today given the care I received or rather didn't that night. I will not ever comprehend how symptoms that every reputable source considers urgent requiring immediate medical attention can be completely ignored.

After a pelvic I was prescribed Metronidazole again resulting in even more massive stomach and abdominal pain/bloating than usual. Couldn't eat anything for a day and half. An ultrasound identified "fatty and/or fibrous infiltration of the liver" so I was subsequently referred to a gastroenterologist who says "everybody has a fatty liver these days". It's Just acid reflux, chronic constipation, IBS. Take laxatives, lots of 'em. After one dose that worsened what has become constant pain I have yellow gunk coming out of my body as I walk down the street feeling like I'm passing an abundance of gas. There was no discussion about it, I was simply told I was noncompliant and need to find another GI doctor. Ironically enough this doctor had been chosen because she was part of a healthcare organization that operates an adult CF program so I figured if there was a doctor who would be more inclined to pay attention to symptoms that others would ignore, it would be there. It would seem such a doctor does not exist.

Finally saw an ENT twenty-one years after first being referred. This nurse practitioner was very nice and seemed knowledgeable. She performed a nasal endoscopy. Didn't think it was going to happen since she had such difficulty getting that tiny little flexible tube through my nasal passage. So minutes after telling me how swollen everything is she then says that everything looks good. Wait, what? Structurally sound, but she'll order a head CT. I was ever so politely told not to call for the results, that I would get a call in due time. Still waiting for that. This is someone who teaches nursing students. There is something fundamentally flawed in a system where someone who doesn't want to do her job is teaching others. My PCP says It's Just osteoarthritis so another label that doesn't warrant treatment of any kind. Almost immediately after the endoscopy my throat became swollen, I got a migraine that lasted over three days, and my blood pressure was spiking over 170 then crashing below 40. My stool keeps getting darker and spotty.

After ranting on social media to my insurance company I was assigned a care coordinator, a misleading title at best. She was very nice when she came to my house to discuss my issues. Before she left, she told me that she's not sure there is a doctor in this state who would know how to treat me as if that's good enough. It was all pretty much pomp and circumstance to shut me up not unlike many aspects of patient care in general to be honest.

The blood pressure problems continued most noticably after eating. My PCP advised me not to take readings when tired, sick or having a headache (i.e. never). I was also given a referral for a mental healthcare consultation since my only problem is stress and that pesky eating disorder I surely must have. I was told I "looked depressed". I say after 47 years of dealing with this, I am a whole lot of things before depressed. Began experiencing significant fatigue after eating as well. I began to research how to lower blood pressure on my own since there wasn't much else I could do. Removed any foods from my diet known to have an effect on bp as well as potatoes. Don't ask me why, but I just can't seem to digest them anymore. Unfortunately that solution is merely a bandaid on an arterial bleed so to speak, a temporary fix at best. Also began the search for a genetics company that might be willing to help me. Apparently I'm not exactly their typical customer since I'm not planning a family, I didn't have an order for testing from a doctor, nor has a family member been received a diagnosis known to be genetic in nature. Eventually accomplished the task at hand after giving up a few times along the journey. I had become resigned to my fate and stopped even trying at one point. Then I read an article written by a woman named Alexandra C.H. Nowakowski. She shared some very personal details about her own journey ending in a diagnosis of atypical CF. So I brushed myself off and continued until I received a call from a geneticist telling me I have Crohn's disease. I was relieved to finally have a diagnosis not realizing I really didn't because it can only be a diagnosis when it comes from a doctor. I was given a referral to an allergy doctor who asked me, "Why were you sent here?" He was actually one of the kindest and most competent doctors I've ever seen. He was convinced I have lupus (see the third sentence on the page). He sent me to another rheumatologist and neurologist telling me they would actually do their jobs unlike the others. But instead of hearing, "Let's give you some treatment now" I sat across from a doctor rolling her eyes since we don't diagnose based on genetics who proceeded to insult my dead father. Apparently not based on symptoms either. Too bad I don't have that golden standard of diagnosis being family history or at least a test they point to saying that's the problem or an image to say that's what we need to fix. Those seem to be the only scenarios that will get a patient a diagnosis around here. I quickly came to understand that the general consensus is that genetics is not real science, Crohn's is not a real disease, and It's All Environmental. I somehow allowed myself to be convinced I should take a different overnight laxative that would surely solve my problems. Woke up feeling like I had the flu with a migraine that lasted a day and a half. My left leg (yes, again, the left leg) was swollen to the point I couldn't bend my knee without pain. The swelling below the right side of my ribs that comes and goes felt like I was being poked from the inside for days. I suppose the desire to live is stronger than reason that should have clearly indicated a doctor's advice should not be trusted when that doctor has already insulted you and your deceased family members. Once again I was told I need to see a different specialist. The neurologist was the worst. Inspected me like a piece of cattle at auction with the vast majority of his time being wasted trying to get me to agree to get a COVID stick, then tells me...wait for it..."Migraines are almost always environmental." Really? So a six year old child has enough negative environmental exposure to warrant migraine headaches and constant ear infections? Apparently I'd be surprised. I now realize that I live in a state where most autoimmune disease is not real, and genetics is considered pseudoscience .

After finally coming to the realization that my PCP would never be anything other than a referralist, I changed doctors for the third time in five years. I was told I'd have to wait six months for an appointment for the privilege of seeing an acutal doctor rather than an assistant. The doctor filled out all the appropriate paperwork and told me to come back for a physical in yet another six months. So after more than a year I was left sitting in an exam room for an hour and a half without ever being seen by a doctor. There are many ways doctors can refuse to provide care without ever actually saying those words like writing on an official piece of paper that I should call for a referral that she has no intention of making after being told not once but twice that the last one told me to find another doctor; but apparently it's "better to see the same doctor," whether it kills me or not. It's mind-numbing how deathly sick a human being can be while doctors do nothing to help. My legs are tingling, almost a burning sensation, after showering. It lasts for hours. Blood draws are becoming increasingly more difficult, and it's taking forever to get a sample. I can't really remember when I realized that I couldn't or rather shouldn't cry because every time I do I get sick; but my sinuses are structurally sound so it's OK. Only it's not. I cannot even bend over at this point without feeling like my head is going to explode, but no one cares. Why don't they care? They're supposed to do that, they just are.

Doctors are no longer even trying to hide the pleasure they take in mocking me at this point nor are they willing to address if just in a patronizing manner my concerns about the only test they are willing to perform. What kind of doctor looks at a patient who is literally afraid for her life with a smirk on his face saying, "If you want a diagnosis so bad, it's the only way."

Our furry companions are even less fortunate in terms of veterinary care because they cannot speak the truth of their pain even if it would fall on deaf ears. My dog, Titan, had a short life filled with chronic infections then autoimmune diseases followed by GI issues off the charts then finally cancer. Sounds eerily familiar, doesn't it? Her brother, Cerberus, couldn't have been healthier until starting a new injectable heartworm wonder drug that only required a shot every six months instead of a monthly pill. After every injection, the dogs would develop new, random symptoms, but I didn't see the pattern until it was too late. They were prescribed a bounty of expensive meds, their health problems minimized, and the more adamant I became that they needed better treatment, the more I was treated like a crazy Munchausen syndrome pain in the ass. They languished for years, one with a growing list of autoimmune diseases, both with symptoms of liver disease left ignored. She was given a treatment protocol for dogs suspected of an adverse reaction to Proheart, but we were not told that nor were we informed of the potential danger of the drug since thousands were dying immediately upon injection. They gladly collected our money and continued injecting our dogs with poison. Instead of sounding an alarm of warning to its members and their clients, the AVMA pocketed 1.5 million dollars from the manufacturer. Even the smallest bloggers who implied that the drug might not be Safe and Effective were issued cease and desist orders by the pharmaceutical company legal team. Profits>Lives. There can be no consent when pertinent information is withheld and suppressed. When Titan suddenly developed a tumor, I asked her vet about it. He seemed quite peeved but did biopsy it, telling me it's only pus in quite the I Told You So manner. It wasn't just pus, it was blood vessel cancer that couldn't be treated, and she was "lucky" to even be alive by the time he got around to diagnosing it months later. He sent her home barely able to walk, provided no assistance to me being maybe 90 pounds at the time trying to get a 50 pound dog with an open wound into a car. I can only assume he figured she die that night since he prescibed no pain meds or antibiotics. There isn't enough karma in this world for that butcher who calls himself a surgeon. I wonder how many payments for his flashy gas guzzling Hummer came out my pocket. I sat ugly crying in the driveway knowing that a dog I would have given my own life to save was dying in an agonizing manner and there was no one willing to help her. Titan suffered for 3 years 2 months 9 days after her first injection of the vaccine-like drug. After all was said and done her medical file was an inch thick. Cerberus didn't fare much better. All of his symptoms were written off using one rationale or another. After being told over and over he had no serious medical conditions by more than one vet, he died with a gut full of his own blood along with tumors in his liver, spleen, and adrenal glands while we were given herbs by a technician rather than an actual doctor since we threw a fit at being told to wait months as our sweet dog was steadily losing control of his bladder. He ultimately survived almost twice as long as his sister after his first injection I suspect due to a lack of genetic predisposition. Both were hospitalized shortly after injections, Titan twice. The only emergency facility within an hour's drive hadn't even heard of Proheart more than a decade after it hit the market. I was told I had to be mistaken since I couldn't remember the exact name at the time and was made to feel like the most incompetent human being ever. I must be allowing them to ingest something that is making them so sick. That must be it. I watched the health of these dogs who had been happy and active start to deline almost immediately after receiving an FDA approved drug, a drug that a government agency, a drug company, and vets all suspected to be potentially harmful yet remained silent. A class action lawsuit was abandoned because there wasn't enough evidence unlike suits surrounding other drugs such as Rimadyl. Apparently dogs lying dead in their vet's office isn't good enough from a legal standpoint. Roxie had a history of infections, developed autoimmune diseases, eventually pancreatic failure. She, too, was prescibed all the overpriced designer drugs, one prescription food after another, never receiving meaningful care for her problems from multiple vets. Imagine what it must feel like being unable to take a drink of water without gagging for four years and not one vet willing to say much more than things like she looks healthy. Since I am the world's worst photographer, I spent quite a while looking for a few halfway decent pictures to include here. It was difficult to see the difference in my dogs and other family members once their lives had become filled with pain. I kept asking myself how it could be so invisible to doctors and vets. Perhaps those who have never experienced such misery are unable to recognize it in the eyes of others. Eventually a vet finally told me that even if she would diagnose her with Crohns rather than "unspecified" autoimmune disease, that the course of treatment could not change unless I was willing to kill her with steroids because that is the only FDA approved option for canines. So they suffer because it's apparently not cost effective for the pharmaceutical companies to trial their drugs in dogs. I cannot begin to wrap my head around why these vets and doctors alike would be so blind to agony. Vets have no qualms about killing perfectly healthy animals as a matter of convenience, but they do not offer such courtesy to ones they force to endure slow and painful deaths. How many times can a vet diagnose dogs with a laundry list of autoimmune diseases and still act like it's normal that they cannot even eat a meal without coughing and gagging, licking the floor for hours, constantly eating everything from grass, leaves, and feces to carpeting while vets pretend that there's not a major problem that should be addressed? Vets and doctors alike are unable to even recognize autoimmune swelling even of the most dangerous severity because patients had become so frail their appearance is not alarming. They cannot see it nor are they able to gauge it so it must not exist, and anyone who thinks otherwise is promptly told the error of their ways and summarily dismissed. There was a research study conducted in 2010 examining several groups of dogs having symptoms commonly associated with CF looking for the CFTR gene without much success. I believe that outcome would have been entirely different had they looked for genetic markers for Crohns in addition to CF. You can't find something if you are not looking in all the right places. Immune, autoimmune, liver, cancer or sepsis, death. The pattern is clear if you're willing to pay it some attention. Unless you think that Purina and Pedigree are making dogs sick, then it's not merely environmental factors in play. IF a researcher were willing to compare the health status of individuals like me who have received only temporary at best treatment of symptoms without underlying causes ever being addressed and who received all recommended childhood vaccines with those who had not, such as Amish communities that would be a wealth of information there, I think the data would be most interesting.

If you've made it this far, you're probably wondering why so much detail with what is largely useless and uninteresting information. The answer to that is really quite simple. My entire life every health problem and symptom I've ever had was written off by doctors. Without fail they would manage to dumb it down to Occam's razor whether or not they had to break me to fit me in that box. I can only hope that one day someone somewhere will read this and realize It's NOT Just all the labels I've been given over the years, and I am none of the things doctors have told themselves I Must Be in order to justify not providing me with medical care. They refuse to even acknowledge what they don't understand, that which they do not have a proof positive test that can diagnose.

Regardless of the fact that I found exactly one journal article that had the audacity to state a patient claimed there was a sinus "component" to Crohn's, in my case, the progression was clear to anyone willing to pay attention. The congestion beating around my head my entire life wreaked havoc as it spread throughout my body while doctors did nothing but write more labels in a medical chart that served as diagnoses. That unending pain in my neck, shoulders, and back was simply fibromyalgia. Those lung problems, it's just asthma. The decline in liver and kidney function, it's only IBS. The heart and all the other symptoms, they can just be ignored because it's easier to do so than to attempt to treat diseases that are expensive and seldom truly manageable especially after being ignored for decades. Therein lies one of the problems with the medical industry, and make no mistake that is exactly that, an industry. Profits are more important than lives, that's the bottom line. Insurance companies have created a culture amongst medical professionals that ultimately devalues human life. People shouldn't have to waste their lives striving for but failing to reach some level of normal. I happen to live in a county where jury duty lasts not for one day but for two solid weeks. Since I don't have a doctor willing to acknowledge how sick I truly am, I had no choice but to attend. The first day as I sat in a frigid courtroom for hours wondering if I would end up with extremities bleeding for months as a result, I could feel the pain in my shoulders and neck building off the charts. I was allowed to go home at lunchtime. After walking about four blocks to the bus terminal and asking complete strangers if I could use their phones since I was not allowed to take mine into the courthouse, I still spent at least an hour breathing in the smoke from the joints that were being passed around the bus stop while I waited since the next bus that could take me anywhere close to home wouldn't arrive for three hours. By the time I got home I had a migraine in full force and was too sick to function, stayed that way for a day a half. It shouldn't be this difficult, a constant struggle trying to get to normal. Just trying to live without help from doctors is killing me quite literally. It is no longer a life but a mere existence. I have lived with excruciating pain for three years, yet no one cares. I have seen over a dozen doctors in that timeframe, probably closer to two, but all I've heard is "not my specialty", "not my responsibility", or simply "why are you even here?" Apparently it's no one's responsibility, pervue or concern. To die without medical care is reprehensible; to live without it is torture of the grandest scale.

The only real question is not and has never been what is wrong with me so much as what is wrong with this healthcare system and the people who fail to provide care when it is most needed. These people are supposed to be patients' advocates, but that has never once been the case for me. I am hardly a special person, and this experience is not unique. My health is a mirror of my father's, who was passed around from one doctor to another without any real treatment for years. I am in no better shape than he was the day he keeled over from a fatal heart attack. My paternal grandmother saw her gastroenterologist the day she died. She told him point blank that if he didn't do something to help her that she was going to die. She was told to keep taking her thyroid and IBS meds, she'd be just fine. She died late that night or perhaps early the following morning of a heart attack. My maternal grandmother died of sepsis while doctors shrugged their shoulders and scratched their heads. How many generations of families have to die suffering without medical care unable to find just one doctor competent enough and willing to give half a damn? There is something inherently wrong with a healthcare system in which a young child is capable of recognizing that which doctors are unwilling, one in which generations of people die fully aware of what would happen while being told It's Just and You Must Be by those who are educated to diagnose. Every generation my family dies a decade earlier than the last. In middle school when we were learning about longevity and lifespan the teacher, trying to engage with the students went around the classroom asking each of us what age we thought we'd live to be. There was one saying 100, most others 90 or eighty, a few in the 70s. I said I'd die before the age of 50. Why is it that a child can understand what doctors refuse to recognize? One of the other students eventually asked me why 50. I couldn't explain it at that young age not really understanding my own reasoning. I suppose on some unconscious level I realized that my family gets sick and dies without any real reasons. I wonder how many people have died without a diagnosis while ME's checked off boxes like heart attack, stroke, liver and kidney disease, or suicide. I am curious how many people have chosen to swallow a bottle of pills, eat a piece of lead, or take a blade up their arms because they couldn't take the pain anymore, and no one would help or even truly listen. My own father bought a handgun shortly before his death saying it was for protection. That was a lie; it served as peace of mind in knowing that he had an out when he decided he couldn't take any more. I understand all too well that a person would be better off dead than living a life with no quality. He was simply tired of having to be strong and push through it all except the massive stroke that rendered him unconscious. I suspect if we had such figures that projected 1 in 25,000 at most would change drastically. The only reason I am alive today is the fact that I have access to internet resources previous generations of my family did not. Dad told me a couple of weeks before he died in his driveway gasping for air as his heart stopped beating that he was going to die because the doctors didn't understand that the surgery they were describing as routine would kill him. As I sat there next to him on his porch step, instead of asking him how I could help or if there was anything I could do for him, I was just as disingenuous as one doctor after another had been toward him. I told him that surely all his doctors wouldn't be so incompetent that they'd all be telling him to do something that would put his life at risk, just do what they say, and it'll be fine. He looked down at the ground and shook his head, realizing at that moment that he would die without anyone believing just how sick he was, a direct result of the culture of denial in our healthcare system that exists toward this disease. I now know the feeling. I've tried desperately to recall a subsequent conversation with my dad before he died, but I believe that was the last time we spoke. No one should have to persevere misery for years then die alone and afraid without support from anyone, not even their own family who rely on doctors' expertise. The million dollar question is what changed three generations ago leading to some families being afflicted with this misery. The answer to that question is more likely calculated in trillions at this point.

There are so many ways in which fail-safes could be in place which simply are not, things that could help to ensure people have a better chance at receiving adequate healthcare. Schools require a sports physical from students participating in school sponsored sports, a mere formality really, just a doctor asking a few questions then signing a document; yet those children are probably not the ones with parents who are neglecting their healthcare. Would it be such a big ask to require schools to obtain one additional piece of paper per student, a yearly certification that every child has been given a physical exam by a doctor in the past year? Being able to refer the parents who fail to do so to the appropriate social service agencies would help these kids who are not mature enough to advocate for their own healthcare needs, but we choose to bury our heads in the sand and tell ourselves that social services will miraculously find and help every child needing it. This is really the most important thing that needs to happen because if a patient lives somewhere like the state of Delaware they will die without ever finding just one close-minded doctor willing to do anything other than stubbornly refuse to consider even the remote possibility that someone could go undiagnosed their whole life and could actually be sick as it is so much easier and faster to assume whatever unreasonable rationalization that gets them through the day and on to the next number aka patient. How about there being actual consequences for insurance companies unwilling to enforce their own policies? My insurance company "guarantees" their subscribers be able to see doctors within specific timeframes, yet when they are made aware this is not happening, they do nothing. The fault is always someone else's, and that buck never stops being passed while people go without medical care having to wait while their conditions worsen and ultimately cost the system even more, and people have to undergo painful procedures that could have been avoided if care was provided sooner than later. Patients who have accumulated a myriad of diagnoses that are not being treated in any meaningful fashion should have somewhere to go and say this isn't right. It's not enough to be able to file a complaint against one single doctor when the problem lies in overall care. Patient advocates are needed, ones who do more than make excuses but don't actually do anything to help. It's time to admit that accessibility does not mean competency and sufficiency. If physician asssitants and nurse practitioners are not allowed to treat patients without the supervision of a doctor who never sees the patient or knows anything about them, then they shouldn't be providing care other than possibly a routine physical. A patient's medical records should never be destroyed during their lifetime. They are not storing hoards of paperwork in file cabinets anymore. There is no good reason practices cannot retain records longer than twenty or thirty years. Both doctors and veterinarians should be required to provide patients or clients with written diagnoses. No one should be expected to remember all the facts that are being quickly presented or even understand all the terms they use when doing so. Vets should not be allowed to profit from the prescriptions they write nor should they have the right to tell clients where they are or are not willing to approve prescriptions. They should also be required to publicly post their fees. There is currently no transparency in the veterinary industry, and that needs to change. People should not have to go broke in order to keep their pets healthy.

Autoimmune disease is running rampant in our society and too many of those afflicted are dying because doctors do not give half a damn to do their jobs. There is a culture of apathy, dismissiveness, minimization, and assumption amongst healthcare professionals that needs to stop. Even those doctors who don't desperately cling to the idea that autoimmune "disorders" are not REAL diseases, choose cronyism over patient's well-being. I have personally experienced over two years of insufferable cruelty listening to one doctor after another tell me I need to see a different specialist passing the buck that never stops instead of choosing to treat or even help me in some fashion. It is beyond unethical that standard operating procedure is more important than putting people's lives at risk. Primary care physicians need to be more than referralists or form fillers. This system of inadequate care will persist until change is forced upon it. Doctors should be required to use genetic tests as basis for diagnosis. Everyday I hear influential doctors on every screen telling me to trust the science yet they hypocritically refuse to do the same. There is a real problem when a genetic counselor can tell me exactly what is wrong with me while doctors roll their eyes at the very suggestion that makes so much sense it's mind-numbing. The fact that accurate diagnoses are not made without a golden standard of family history regardless of genetics and symptoms serves only to show what a failure the healthcare system is for many. Doctors need to be required to record every symptom a patients discusses with them in a patient's medical record. The insurance company mandated idea of one problem per appointment will never allow patients with conditions affecting multiple systems to receive the care they need. I begged every doctor I saw for forty-five years to do something, anything about the congestion in my head, but because there was no paper trail I was denied coverage for a simple scan. FORTY-FIVE YEARS. If I can get an e-mail notifying me that my personal information was disclosed in a data breach of a company from which I made one single purchase three decades ago with which I have not conducted business since, then doctors should be able to manage to hold onto my medical information for at least that long. They're not stuffing mountains of paperwork into filing cabinets anymore so there's just no excuse especially in the case of minors who may not even have access to their medical information. Schools require sports physicals, a mere formality involving a doctor asking a few questions then signing a form for students participating in school sponsored sports for students who are likely not the ones whose healthcare is being neglected. Would it be such a big ask to expect schools to process one more form per student from a doctor certifying that they have received a physical exam in the past year so that the parents of those who are not receiving needed healthcare can be held accountable instead of burying our heads in the sand and telling ourselves that social services will miraculously find and help every child needing it? Unlike the healthcare systems in Europe, those here in the U.S. refuse to embrace AI diagnostic technology into their patient portals even though it is proven to be cost effective, and improve patient care. AI is a valuable diagnostic tool that can save lives because the results are objective and not influenced by personal opinions and judgments. People shouldn't be dying because of their zip codes. Quality of care for autoimmune is largely dependent on social status since those who can afford to keep taking time off work and traveling to one doctor after another until they find a capable one, paying out of pocket for appointments, tests, and procedures or being able to afford a health plan beyond the basics that would offer a larger network and cover tests that would otherwise be denied. Those living in small states and rural areas are most affected. Insurance companies should be required to offer some level of out of state coverage to those who need it. There is an unconscious bias in healthcare; those with dirt under their nails will never be treated in the same manner as those with white collars. It's even worse for those who depend on Medicaid. They are charged fees when changing providers; this has been happening since the dawn of the program, and I was quite frankly shocked to read about it still occurring to this day as I scrolled through reviews of some local providers. They are assumed to be the source of their own problems due to their own poor choices. They are charged retainers to pay for fees not covered by their insurance which are never refunded. Medicaid recipients deserve an insurance card that is not exclusive to the government program so that doctors will not even know how their coverage is paid. Our furry family members deserve to have access to more specialists. They deserve the same forms of treatment that are available to humans with the same conditions. My dog shouldn't have to suffer relentlessly for years because Big Pharma simply has never tested immune modulators and biologics on animals for FDA approval with the only possible treatment being one that would probably kill her even faster. Veterinarians should be held to the same standards as doctors and not be allowed to profit from the prescriptions they recommend.

As long as an entire segment of the population is largely unable to attain adequate healthcare, there will be inequality in the system no matter how many issues of perceived discrimination based on race, language, or culture are attempted to be addressed. It's time for the It's All Environmental mantra to stop being chanted simply because doctors refuse to diagnose or even acknowledge that which they cannot see, touch, taste, or smell. Unless they have a test or picture that tells them exactly what is wrong, then the problem does not exist. Only it does. When a group of people have to waste their lives just trying to reach some level of normal often failing even when they are doing everything they possibly can to be healthy, those are not environmental factors in play. When young children exhibit the symptoms that only worsen over time which are then blamed on one's choices especially given the fact that immune system function declines with age, that's biological. When pets are being diagnosed everyday with the same autoimmune diseases as people, that's genetic. When pets are more likely to be diagnosed with those diseases than human beings, that's a failure of grand proportion. When a geneticist can recognize diseases that doctors do not and refuse to consider even after provided with genetic information, that is pretty much the opposite of healthcare, something many people will experience until the day they die. There are different types of Crohn's though they are not officially categorized in any way other than the part of the GI system they affect. The problem with that is by the time those symptoms are bad enough a patient can manage to find a doctor willing to give an accurate diagnosis, it's already too late. All that can be done is to try and mitigate the damage if that's even possible. Until the healthcare industry is willing to acknowledge that preventative treatment is necessary, their treatment costs will continue to rise as will the death toll. You can't find a solution to a problem when you're not looking because you refuse to acknowledge that is exists. It is, it was, it always has been about the congestion, the mucous that silently damages beyond repair because doctors refused to deem it a real problem. Doctors cannot be allowed to continue picking and choosing which diagnoses in their holy grail they want to consider valid. Patient advocacy organizations do precious little to help those who are undiagnosed and specifically state as much. They fail to help those who need it most. There will come a time when the voices of the genetically defective will become so numerous and loud they will no longer be able to be ignored. Given the sheer number of Safe And Effective vaccines administered for the Greater Good throughout our lifetimes, the side effects, and the adverse reactions, I can only hope that day will not be too far away.

What I have experienced has not been healthcare but an abomination. I will never understand why I was never deemed worth of actual medical care. Doctors watched me endure a lifetime of sickness and pain followed by a descent into the bowels of hell. The precious few doctors who were well aware of how serious my situation was chose to fall in line and protect their colleagues instead of doing the right thing and helping a patient obtain adequate medical care. The longer I suffered, the more I began to demand that they needed to do something to help me, the more belligerent they became. It's almost like they were pissed off that I hadn't died and stopped being their inconvenient truth. I have nothing but contempt for those who refused to help me, an industry where there is little accountability, a country full of people who turn a blind eye to the suffering of others, a world into which people are born to withstand lifelong pain. I wasn't always a bitter, hateful person, but the medical establishment did a bang up job making me exactly that. Ironically enough, they create their own self-fulfilling prophecy. If someone is treated like a lost cause long enough, they will inevitably become exactly that. As I sit here writing this I am something barely recognizable as a human being, a direct result of my body rotting from the inside out for 50 years unchecked. My hair is so thin I cannot tie it back because they just fall out. I am damn near blind without glasses. I have been hacking up a lung for nearly four years. I struggle to breathe much of the time. There is nothing but pain in my neck, shoulders, chest, and left arm. I cannot eat without excruciating pain after which my heart rate and bp go crazy and I become extremely tired. My throat is so swollen and filled with ulcers no one will treat that I run the risk with every bite of food of the airway becoming completely blocked again. I am unable to remove bodily waste in a normal manner. My head hasn't stopped hurting on a daily basis in nearly a year. I am nauseous all of the time. I cannot even bend over without feeling like my head is going to explode. I often feel liquid oozing in my head. My body is so overwhelmed with infection I walk around looking like I've been beaten with an oozing eye. No one cares. People are dying because doctors do not care. Patients are dying waiting for medical care. They are dying because of their zip code, unable to seek medical care outside a network with few doctors, many patients, and the acceptance of the Greater Good ideal that as long as a doctor's batting average is OK, then that's good enough. I suspect that it's neither OK nor good enough for those who lose their lives because of a system that failed them. We are dying without treatment because doctors cling to willful ignornace and a level of unconscionable apathy. To those who would blindly follow an Orwellian narrative rooted in eugenics determined by those who financially profit from their power, devoid of ethics, unscrupulously torture animals without benefit to science, and experiment on foster children having no one qualified to provide informed consent if that is even possible, I say cross your fingers and hope that you remain Great and Good because anything less is a greuling torture of epic proportion. Insurance companies added health insurance to their offerings strictly as a profitable endeavor. As healthcare became more expensive and people were dying unable to afford the care they needed, it was presented as a widespread means to prevent death and keep people healthy even though the average person will never see as much in benefit as they pay. Even after insurance and pharmaceutical companies hijacked patient care with their lists of steps that must be taken in order for tests or medications to be covered and their lists of approved drugs, health insurance was mandated because it makes perfect sense to tax people who already cannot afford insurance. Bureaucracy became the norm. People die waiting to see doctors, waiting for a doctor willing to provide care as opposed to simply filling out the necessary forms for that payment from an insurance company, oftentimes still unable to afford life-saving procedures, tests, or drugs that are not covered for one ridiculous reason or another. Acceptable loss was presented as necessary, an unfortunate outcome of business as usual. Then the medical authorities told us that early treatment was not always necessary so people die as they "watch and wait", more acceptable loss. Doctors who provided care to certain patients in recent years were reprimanded, their reputations lampooned. I have to wonder just how much human suffering and how many lives can be considered acceptable loss especially when death is not immediate, involving years of sickness and pain. Where should that line in the sand be drawn? In what world would it make sense for an industry that is supposed to keep people healthy to be regulated by companies that profit from illness and death to the tune of more than THIRTY BILLION DOLLARS annually now according to the National Association of Insurance Commissioners. I cannot imagine a better representation of a fox guarding a hen house, and as long as it continues, the number of disposable people will continue to rise.

I deserved a life that would have allowed me to hold my head up without pain, to breathe like a normal human being, to smile, to have a picture taken once in a while, to be free of pain in my legs, stomach, chest, face, and head. I deserved to be able to leave my home and go out in public without the constant fear of getting sick knowing that no one would understand the full extent of it since they refused to realize that my normal was never their expectation of what it should be. I deserved a chance at some level of a better normal than I ever had because no one wanted to bother trying to help me achieve that. This is a disgusting disease, both literally and figuratively; it is as dehumanizing as the doctors who treat patients with utter disrespect unlike service providers in any other industry. I guess there are certain perks when you have the market cornered. As long as they go through the motions filling out the forms required by law, it doesn't matter that the process of diagnosing a patient is devoid of common sense, a little something they seem to exchange for medical degrees. There is not a shadow of doubt in my mind that I would have been better off never having been born so to those planning on children I say have genetic testing for CF & Crohns, and if you are a carrier of genes associated with those diseases then if you do not have the financial resources to provide that child with meaningful healthcare which may very well be feat in itself, then do not bring another human being into this world to face a life of torment. As weak and pathetic as I may be, I am stronger than anyone given the disadvantage I've had no choice but to overcome every minute of my life. I see on one screen or another everyday people whining about insignificant things while others fight for survival. When the aspiration of some people is what others take for granted, that's not a level playing field nor is it environmental. It is brutal, it is cruel, it is morally and ethically bankrupt especially because it's so unnecessary with adequate medical treatment. As I sit here now with eyes that can hardly see, hearing a constant incessant screeching in my ears, with thinning hair and no teeth, unending pain in my neck, shoulders, chest, stomach, abdomen and legs, I wake up every morning knowing without a shadow of doubt that I would be better off not living being sick every minute of the day feeling like I have the flu at best. I cannot cry without getting sick for days on end just like I cannot lie down to sleep nor do so for more than a few hours at a time without the same result. I have great difficulty breathing because of the congestion. I cannot use my hands with any level of dexterity or even hold things without being especially careful not to drop them. Imagine washing dishes being a daily ordeal in your life. I cannot eat without pain and bloating unable to maintain a weight that tops 90 pounds. I am painfully cold every waking minute; the only time I am reasonably comfortable is being wrapped in a hot blanket. Words cannot effectively express just how tired I am of sickness, pain, and trying to deal with the dysfunction that passes for a system of medical care. It's OK though because It's Just. The running list of It's Just diagnoses other than the original one being cholic include acid reflux, chronic constipation, chronic ear/upper respiratory/sinus infections, chronic bronchitis, tinnitus, migraines, fibromyalgia, Raynaud's, nasal polyps, Hashimoto's hypothyroidism, IBS, fatty liver, asthma, osteoarthritis, atherosclerosis, pelvic congestion, and pink eye. I am well aware that I will die without a meaningful diagnosis because the medical industry refuses to acknowledge the only one that matters for what it truly is. I will, however, leave this world with the cold comfort of consolation that there was someone who tried to help me to the best of his ability. His name was Cerberus D. Dog. Why is it that a child and a dog can see that which has eluded hundreds of doctors over the course of damn near half a century? It's because they are not biased, arrogant, presumptive, or indifferent; their thinking is not tainted by traditional, outdated thinking, They do not refuse to consider what their senses tell them is true. They do not judge people based on whether they say the right thing, do what is politically correct, wear designer clothes, drive a fancy car or live in a "good" zip code. They are better than all of us.

May life treat you the way you treat other people and animals.