autoimmune

I’m Celebrating Today, but not for the Reason You Would Think

Today is a day of celebration for me! However, my celebration is probably not one that someone would consider a reason to celebrate. You see I have spent years and years being ill, matter of fact looking back to my childhood, I can honestly say that I was never a healthy person. I was always suffering with one painful area after another. Then when I hit my early twenties my health began to spiral out of control. At first it was a slow progression, but with each passing decade the destructive progression of whatever this was began to speed up. I continued to fight like hell to push through whatever this was that was happening to my body. I spent countless hours crying in pain and more trips to the ER for help then I can even count. The doctors would run one test after another on me and find nothing other than inflammation of unknown origin.

As the years went by, I would find myself traveling the country searching out one specialist after another. Many would take a guess as to what was happening to my body and then some would tell me that it was all in my head and show me the door, while others would then label me with one autoimmune disease after another. Each autoimmune disease was based on whatever area of my body was inflamed at the moment. If my skin was inflamed they would label me with psoriasis. If the joints were inflamed I would get labeled with some form of arthritis like Lupus or RA. If it was my stomach or colon I would get labeled with Crohn’s disease and on and on it would go. By the time I hit my forties, I had truly become the queen diseases, yet no one really knew with any certainty what was wrong with me. During these years I would try one drug after another to help quell the progression and ease my suffering but most did very little and many caused more problems.

The First Clue: Ehlers Danlos Syndrome

A breakthrough would come in 2007 when I would be genetically diagnosed with several forms of EDS (Ehlers Danlos Syndrome). This would lead to several answers for many of my problems, such as Dysautonomia, Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, etc.. However, it still did not account for the systemic inflammation, the deterioration that was now being seen in imaging or through other testing. It also did not account for the level of suffering and pain I was dealing with. On top of this there really wasn’t any treatment for EDS or the sub-illnesses it had caused. It would be at this point that my doctors and I would turn to just trying to treat my symptoms as they arose. This included pain pills, anti-seizure meds, stomach meds, etc.. Most of these treatments did very little other than to lessen the pain, but because the inflammation was still raging in my body like an all-out war, I continued to experience further disabilities due to destruction of joints and organs. My life had become a living hell to say the least!

Fluoroquinolone Toxicity Syndrome and Lyme: A Wonderful Combination

By 2011, after another bout with diarrhea, I was once again given another dose of Cipro, only this time combined with my prednisone. This would set off a severe reaction within my body known as Fluoroquinolone Toxicity syndrome. This reaction coupled with my EDS (which is a collagen depleting syndrome), would leave me bedridden for years. I would once again try like hell to fight my way back to some kind of normalcy. I finally had reached a point of being able to get up and take care of myself and began to be able to walk again. Now this is not to say that all my previous problems, pain and disabilities had also gotten better because they had not. As a matter of fact, they had continued to progress. However, I tried to adapt to my abilities, body and life and in celebration of being up and out again. We decided to take a trip to Tennessee. It would be this trip that would once again, throw my life into a turmoil. You see I had been bitten by a tick; one that was carrying a whole host of infections, which it so kindly infected me with.

For the next 8 years, I would aggressively attack all the tick infections I had been positively diagnosed with. It was a long arduous battle that kept me very ill and quite often bedridden again. Then just as it seemed that I was turning a corner with beating these infections, I would go into another “flare”, sending me reeling and back to my bed once again. My abilities and life had forever changed and not to the betterment either. Many nights, as I lied in my bed crying softly to myself, I would wonder if I would ever know a moments peace again. During some of those nights I would literally fantasize about dying and think how glorious it would be to be out of pain once and for all, but not having lived my life to the fullest yet, I would pull myself back from the brink of swallowing a whole bottle of pain killers.

The tick infections would go on for so long that I had lost the sense of who I was and who I once was. I had reached this point in my mind of thinking that if I could just get back to when I was younger, my life would be so much easier, because after all I had been healthy back then, right?! This somehow had become a false fantasy that I had placed in my mind, maybe because my health had become so bad that looking back on my youth made it seem as though I had been truly healthy, but in truth that was not the case. It would take going into cognitive behavioral therapy for me to look back on who I was and how unhealthy I really had been. This would be the dawning moment for me!

Ill Since Childhood

Once I had realized that my health had been going downhill literally from the moment I took my first breathe of life, I quickly realized that everything I was going through and had been through since taking that fatal dose of Cipro was not the end all to my health problems. This included the love kiss I also received from that fateful tick in Tennessee. No, my health problems dated far back into my earlier years and even after the diagnosis of EDS, there was still a sense of something more sinister still taking place within my body. It was something that no doctors had yet been able to place their fingers on, but it was something that was eating my body one cell at a time and leaving me in total and utter grief.

It would be then that I would begin to wake up and question the tick infections as still being viable within my body. I mean after all I had spent seven of the eight years saturating every cell and nook and cranny of my body with every kind of antibiotic, anti-fungal and anti-parasitic drug out there and this was not to mention the numerous alternative therapies. How could these infections still be so alive within me? How?! At this point I would sit down with my doctors one by one and go through my life, chapter by chapter, from one illness and label to another. I would question them on everything they knew and then some. In the end, they too would come to the same conclusion as me, this could no longer just be Lyme and company. No, there had to still be some sinister force lurking within my body; the same damn one that had showed up days after I took my first breathe of air and one that was continuing its ugly assault on my body, with no mercy!

The quest began, I was determined to find this beast and put a name to it. I made a promise to myself that I would not die without first being able to look this beast in the face and name it. I was going to find him within me and level this playing field once and for all! So, I began pouring through every medical book and journal out there. I was so intent on finding the answer that I literally kept a journal of every disease that had any possibility of being my monster. I came close to fitting hundreds of different diseases, but with the help of my doctors we were able to narrow it down to just a few. Once we had settled on a few, we began looking for any kind of definitive testing available for them. Thank God science has been moving at the speed of lightening over the past decade because they made our quest for diagnosing many of these diseases as easy as a DNA blood test. I would drag my ailing body into my doctor’s office week after week, throwing down one more disease to test for, but as each came back negative my hope for an answer slowly, but surely, diminished. It was as if someone had slowly let the air out of my birthday balloon and it left me as deflated as that balloon on the floor. Thank God my doctors were as curious as I was for an answer because they kept giving me encouraging words and propping me up when I thought the quest for the Holy Grail was over.

The last test, the very last test that we thought I might have was done and when it came back negative too, I collapsed on the floor, sobbing as if someone had stolen my new puppy. I cried for days on end, setting off my mast cell so bad that my face had swollen to a nearly unrecognizable state. I had been beaten and defeated and as I laid in my bed envying the people in the obituary columns. I began to think maybe this was still Lyme. What would it hurt to go back and try antibiotics once again? So, I set up an appointment with a new Lyme doctor and set off to see him. This doctor sat there listening to the story of my journey with wide eyes open and as my story continued I could see his facial expression go from “I think I can help you” to “I’m not going to be able to help you”. As I finished my story, this kind man sat back and explained to me that I still may have Lyme, but that there was something more at play here, maybe it was the EDS and all the sub-illnesses it causes, or maybe it was the floxing from the Cipro, or maybe it was this dark lurking beast that no one could pin down, but in any case, he was not sure that more antibiotics were going to bring me any further than I had already come. However, he was more than willing to administer them, but warned me that they would make me very ill again, worse then what I already was, and once I recovered, I would more than likely be right back to my baseline; the same baseline I was at sitting in front of him that day. Now, I thought for sure that I was going to fall on the floor and begin balling like a baby, but after a moment of thought, I realized this man just gave me the vindication that this more than likely was no longer Lyme and company, so there still had to be some sinister force lurking within me. So, I told the doctor to please run every Lyme and company test on me again, and while I waited for the results, I would go home and think about re-entering the world of antibiotics and Lyme.

Time to Regroup

I went home that night not as upset as I thought I would be and called my regular team of doctors. I told them what the new Lyme doctor had said and explained the route we were going to take with the tests and my thinking about treatment again, although my mind was already pretty much leaning toward not going down this road again. My team of doctors were thankfully on the same page as me and were quite supportive in whatever my decision was to be and in helping out in any way they could. Over the next few days, I would sit in complete silence going over every chapter of my life, page by needless page. I would recount every conversation with every doctor I had seen and mull over every test that had ever been done on me. Then it was as if a light bulb had gone off in my head. No, actually it was more like the finale to a great fireworks show on the fourth of July that burst from my brain! I quickly grabbed my notes and poured through them, I knew what was going on for the first time, it was all coming to light, the beast was being exposed and I had him cornered!

You see, I vaguely remembered a rheumatology appointment that I had had shortly after being diagnosed with IBD. The rheumatologist who I had been working with for over a decade had brought up this disease, but because he had given me so many labels of autoimmune diseases over the years, all of which I would now find out went along with this illness, that I took what he had said with a grain of salt and then threw it out like the baby with the bath water. Instead, I went back to my GI doctor who had just diagnosed me with IBD and felt this is where I needed to focus my attention and just maybe if we conquered this illness the rest would just fall into place. I never did go back to the rheumatologist and soon after that appointment, I would also be diagnosed with Lyme disease, a disease that could account for all my inflammation. This then quickly put the rheumatologist’s theory of a new diagnosis out of mind. I thought between the IBD diagnosis and the Lyme disease that I had finally found my holy grail and all would be well soon. Unfortunately, at that point in time it never dawned on me that my long standing systemic inflammation had started long before the tick bite and even the IBD diagnosis. Now, I don’t know if I just wanted it to be this easy (not that treating either of these illnesses was an easy walk through the park, but compared to what I had been through already it seemed like this was going to go smoothly from here on out) or if I just wanted to live in a state of denial and pray like hell that this was all there was. If I had only had a crystal ball way back when, so as to see that nearly a decade later I would still be suffering terribly, dealing with more body wide destruction and once again searching out the horrible beast that would still be lurking inside me. Maybe then I would not have thrown the baby out with the bath water, but instead took each new finding as being one step closer on my journey to meeting the beast face to face.

Eureka Moment

So, coupled with this vague memory and some new found information, I set out to look up the diagnostic criteria for the disease that I was sure this time was it. I sat there reading it line by line checking off each criteria I had met, and by the time I had reached the last point of criteria I realized that I had checked off every box! I looked up from my computer, while sitting there on my bed and felt as though the heavens had opened up and the sun’s rays came shining down on  me, all I needed now was a chorus of angelic singers to fill the room, like you see in some religious kind of movie where God opens the heavens down on to you and delivers the miracle you had so desperately prayed for!

Now as elated as I was, I knew I had to get my ducks in a row before once again bringing another disease to my doctors. So, I looked up the overview of the disease along with the symptomology, as well as any other testing needed to determine if someone had this illness. There was my choir of angelic singers, every note on the page poured out my life’s story of existence. Starting from the very early days of symptoms to the progression of the illness throughout my young adult life, to where I was at now. Not only could I see myself within these symptoms but also other family members, many who like me were in search for the mysterious beast lurking within themselves too. I would go on to see the sub-illnesses often associated with this disease and again like pages in the novel of my life there was each disease one after the other laid out in the succession I had so exhaustedly exhibited. Finally, the diagnostic criteria used in determining this illness would go on to show the systemic body wide destruction this beast would cause over a life time, the same destruction imaged and seen so often in my own health records. With all this knowledge now in hand you would think I would run off to the phone to call my team of doctors, but before releasing the congratulatory balloons, there was one more thing for me to check. I needed to know if and how this disease was related to EDS. So, I looked it up and there in plain sight was my answer, it was one of several sub-illnesses often seen alongside of EDS. Once again it was stated that people with EDS often suffer with this illness and as of yet like so many of the other sub-illnesses associated with EDS, there was no known reason or verifiable scientific connection as to why. Well, I had all I needed now, so it was time to let the team in on this one.

The Diagnosis: Ankylosing Spondylitis

I tried to stay calm as I called and messaged each doctor. I went through each bullet point I had made in my notes and then brought up the prior raising of this illness many, many years ago now. I laid out my case, like an eager new lawyer, I presented all the evidentiary evidence that had been collected over thirty years of living with this illness. I was precise and on point, I was ready for any of their questions, yeah I was in this to fight like a lawyer who was trying to save their client from the electric chair! When I finished pleading my case, I sat there in silence as each of my doctors took the information in and then there it was, those glorious words “OMG! You hit the nail on the head” They had never thought of this diagnosis and were unaware that a rheumatologist so many years ago had hit on this disease. Each of them had some vague knowledge of the disease and some had even treated other patients with it, but none had thought about applying it to me, mostly because I came to them without the diagnosis and my symptoms seemed to manifest over decades, leaving everyone bewildered. Once they had heard me plead my case point by point right down to this last flare which once again encompassed a part of my spine they knew I had hit the right diagnosis. I would then go in and get formally diagnosed. A week later the choir was singing my praises as the heavens opened to shine down on me. I was officially diagnosed with this disease. Okay it was time to tell the family and throw the celebratory party, you know the one that screams with pure joy “That I have a progressive inflammatory disease and it has a name, it’s called Ankylosing Spondylitis!!!!”

I had found the beast, I had finally seen his face and from here on out we were going to be on an equal playing field. I know to most people finding out that you have an awful progressive disease that is going to limit your abilities and turn your world, your hopes and dreams upside down and inside out, would be devastating to say the least, but for someone who has been chronically ill for years on end, it came as a sweet relief. You see chronically ill people live somewhere in between getting sick and death. What I mean by this is that we are all taught from an early age that if you get sick you just simply go to the doctor, who then runs his tests and diagnosis’s you. You then get a prescription which you take and within a few days to a week you are back up and rejoining the living world. Or we are taught that you get sick and you go to the doctor who then runs his tests and with sadness in his voice he explains to you that you have some awful deadly disease, which in turn you go home to prepare for your death. However, there is this place in between that getting sick and death and that place is known as chronic illness. It is a place where you go when your illness decides to never leave. It is place of fear, isolation, and loss of job, finances and quite often even family. It is also a place where patients often find themselves being abused at the hands of the very people who are supposed to be helping them find their way back to health: the doctors!

You see for most doctors, they are taught that if you cannot see the beast within the blood work or on imaging, then the beast does not exist. In cases like this, the doctors then turn on their patients and quite often blame the victim for their own suffering. The worst part is that in 2019 we know enough about autoimmune diseases and genetic defects to know that many if not most diseases can often take years to decades to fully present themselves and in the meantime, the patient can go on to suffer the low level of inflammation that is still not able to be detected through our archaic testing. Yet instead of working with the patient, however long that may take, most doctors show the patient the door and blame them for their own suffering. The world of chronic illness is like the black hole where frightened ill people get sucked into against their will, to never be seen as human beings and a part of society again.

Being Chronically Ill

The unfortunate fallacy propagated by the healthy and even some doctors is that the chronically ill are lazy, they just don’t want to work or they like the attention and so on and so on. Well, I can tell you that anyone who is chronically ill works harder on a daily basis then even the hardest working healthy people. You see we work hard at “faking it” for the healthy so they will believe us and not leave us. We work hard at trying to manage our finances so as to be able to afford our multiple doctor appointments and medications. We work hard at searching for that one doctor, the one who will finally draw the beast out of us and name it and work even harder at convincing a doctor that we truly are sick and in pain. We work hard at doing daily necessities like showering and shopping, things most people do without a second thought, but for us it can leave us wiped out only to pay for days on end. We work hard to keep hope, so that one day we will find the answer and slay the beast, because if we didn’t work hard at this we would have ended our life after the first doctor showed us the door! We spend countless hours with doctor Google, praying we get lucky and hit the mystery medical jack pot! On top of all this many must still care for their children, while facing family ridicule for not getting well. We live through guilt and shame and fear and ostracization from society as a whole. Many are accused of being mentally ill and for many of us, myself included, spend countless hours questioning our own sanity. We are accused by doctors, family and friends alike of being attention seeking, malingering, or suffering from somatization disorder, or worse yet drug seekers! Yet none of this could be farther from the truth. We, just like anyone else, want nothing more than to get better and return to our healthy lives or at the very least have the beast named so we can set out a plan of attack to assault the beast who has raged this war within our bodies. We don’t want to spend one more minute in pain, we don’t want to see one more crass rude doctor and God knows we do not want to swallow one more pill or supplement that leaves us with awful side effects, no we want to be like you, healthy and full of hope and joy for the future, only this time with a new found compassion for those who are fighting a silent beast within!

So, yes after years of being ill, after years of being tormented by our bodies, our doctors, our family and friends and after years of losing everything we have come to cherish in life, when that elusive miracle of facing the beast actually happens and we have found our Holy Grail, we rise to our feet and do the happy dance, we shout from the roof tops that we are “really” ill and no matter what the diagnosis is or what the prognosis of the disease is we are ready to celebrate and celebrate hard! For no matter what the diagnosis brings in the future, it surely cannot be as bad as the journey itself was to finding the beast. We once again find a new kind of strength, only this time we are not fighting ourselves, the doctors or the ones around us, but instead we are finally fighting the beast and we do it with a glorious smile on our faces and little spunk in our steps! So, today I am celebrating my disease, Ankylosing Spondylitis, matter of fact I think I will even get some balloons and a cake, do you think they can write on the cake “Congratulations on your progressive disease!” LOL!

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