DO NO HARM
IMPORTANT NOTE FOR PHYSICIANS: WITH ALL DUE RESPECT, IN THE 6 YEARS THAT I SOUGHT ANSWERS FOR THE TERRIFYING SYMPTOMS I WAS EXPERIENCING AND BEING TOLD NOTHING WAS WRONG, I DID BECOME TRAUMATIZED BY DOCTORS AND EVENTUALLY DID DEVELOP SEVERE ANXIETY IN THE PRESENCE OF A PHYSICIAN. SO MUCH SO THAT I WAS PRESCRIBED AN ANTI-ANXIETY MEDICATION FOR WHEN I HAD DOCTORS APPOINTMENTS. AND THE RESULT? WHEN I DIDN’T HAVE THE ANXIETY……I WAS BELIEVED AND HEARD AND TAKEN SERIOUSLY. PLEASE, PLEASE LOOK PAST PEOPLE’S EMOTIONS. BECAUSE THE ANXIETY I DEVELOPED WAS NOT THE PROBLEM AND WAS FOCUSED ON TOO MUCH WHICH LED ME TO FALL THROUGH THE CRACKS. IT’S ALL ABOUT SURVIVAL MODE WHEN IT COMES TO YOUR BODY AND YOU GET NO ANSWERS, WHEN YOU KNOW SOMETHING IS WRONG. I KINDLY ASK YOU TO KEEP THIS IN MIND.
Six years ago my life changed. At first it was a subtle yet chronic change. Changes that soon brought a plethora of terrifying physical symptoms. As time went on these subtle symptoms I was experiencing only progressed with intensity and duration. I had no clue that what I was experiencing was a war going on within my body. So many things both inside and outside of my body started changing. It wasn’t until three years later that I would begin to connect the dots.
I got a late start in life. My adolescent years into my mid to late twenties consisted of many, many…. unhealthy life decisions. I had no direction and thought I was literally invincible. I was absolutely lost. My life and the experiences I had endured, at no fault of anyone’s, set me up to have difficulty coping with all of the things that life would bring my way. Things that damaged me emotionally. Things that weren’t supposed to be talked about or where seen as “ok” in some people’s eyes. However, inside, these things were psychologically wrecking me and how I would go on to attempt to cope.
At the time, the only seemingly way of coping with life was to be in relationships and to self-medicate. I was on a mission to do anything to avoid my own reality. My entire life changed the day that I got sober from drugs and alcohol and tapped into what had always been with me, my true purpose. This purpose was that I care immensely about life and other people’s lives and somehow wanted to make a positive difference for others. I wanted to make something of my life that would make a difference for the benefit of everyone who struggles in some way. I always had cared passionately about people. I just neglected myself, and ultimately others in the process of trying to be everything to everyone. I lost my way and my identity. At the same time fearing any glimpse intimacy. Because intimacy equated to instability, chaos, heartbreak, abandonment and rejection. The end result? Pushing people away, sabotaging relationships with others, and harming others and myself emotionally.
My heart ignited with passion for this purpose inside when I got sober. I realized how amazing life could be when I saw it with clarity, forgiveness, conviction, compassion, authenticity, unconditional love, genuine caring and making things right with others and with myself. As well as learning and believing that “hurt people, hurt people.”
I decided to pursue becoming a counselor in chemical dependency. At three months sober that’s what I did. I pursued counseling others in addiction from drugs and alcohol and sex and relationships for the next seven years. The reward of seeing others get their emotional health back and discovering their own light for life was indescribable. Absolutely indescribable. It wasn’t that I fixed them. I saw myself only as a guide. The same way my counselor guided me. After several years of being a chemical dependency counselor and doing my own self-work it was clear to me that many people struggle with underlying issues that led to self-medicating and ultimately leading to addiction. The same way my story played out. There were countless events that happened in my own life prior to what I call my “rock bottom” that contributed to my distorted perception and lack of coping, as previously stated. Many of these events were of my own creation and many other things were out of my control. I am not placing blame or shaming any one person in my life. In fact I am grateful today for everything that has happened. This is simply my reality and my story. I soon developed a deeper passion to work with others on a more in-depth level. To get to the root cause of what ails them and discover what has happened in their lives that has distorted the ways in which they perceive themselves, the world, love, relationships, etc.. I continued working 3 jobs that involved helping those struggling with addiction and entered into a graduate program in clinical psychology. I wanted to be able to work with others on their core struggles, beneath their addictions. The past is not just the past. The past has conditioned our brains to how we approach and perceive life in all areas.
I saw all of my friends getting married and having kids or traveling and having money to be able to do what it was they wanted to do. There were times I fell into self-pity and self-resentment at all of the decisions I had made earlier in life. There were many times I fell into resentment towards others, though quickly learned to forgive as my resentments were only harming me.
My passion only grew and I wasn’t going to give up helping others see they too could heal. I learned self-forgiveness and practiced it daily the best that I could. I completed my master’s degree in three years and went on to work with individuals and their core struggles. I was working for a group practice with hopes to build my own private practice one day. I saw so many people transform into loving themselves and life again. I was well on my way to building my practice. I loved it. It brought so much joy and gratitude for life to see people healing. People whom also at one point felt hopeless, depressed, suicidal, alone, and in very, very dark places…healing and knowing they could enjoy life once again. I do believe however, again, I was trying to be everything to everyone and the result? Self-nelgect. Though I didn’t think so.
In my first year of graduate school I noticed one day I suddenly lost all physical and mental energy. I felt completely run over. I thought I was just getting sick and so I attempted to wait it out. As days went by I couldn’t do anything but lay in bed if I wasn’t going to school or work. I chalked it all up to over-working myself as I was taking on a lot and that was something I never did in the past. I never had the drive I had then. But then something else began happening. Two years into graduate school I started to notice my hair falling out. I didn’t think anything of it because I had so much hair and it was so thick it didn’t seem to make a difference. After many months of it continuing to fall it became bothersome when I suddenly noticed I had lost half of the hair on my head. I immediately addressed it with my doctor. He proceeded to point to his balding head and stated, “I’m losing my hair too.” I felt completely dismissed. But he was the doctor. The one I trusted to know if this was a symptom of something serious. He ran some basic hormone tests, a complete blood count and metabolic tests and everything came back normal. The doctor said if I was losing my hair it must be related to stress. Though he commented on how thick my hair was when I knew very well half of it was gone. I read about it online and discovered hair loss can be a result of stress, though these findings are controversial. So I too brushed it off as working three jobs, getting married, doing an internship and going to graduate school. I sought another doctor’s opinion about it and his response was, “Tell me about it. Aren’t we all losing our hair? I’m losing mine too. Gotta go!” Again, I felt dismissed and devastated. I loved my hair and it was quickly decreasing in volume. My self-esteem started to plummet and I became extremely self-conscious though others said they could not tell I had lost any hair. I started to feel dismissed by those around me. Over the next year I would notice my skin was becoming increasingly pale and extremely dry. Almost as if the life had just been sucked right out of it. My fingernails also became dry and peeling at the same time and would get horizontal dents in them. I knew something was not right. I continued to watch my body change, one thing after another. It was like grasping to hold on to one last thing that I could at least still feel good about in regards to my body.
Thyroid disease runs in my family and so I had my thyroid panel checked along with antibodies and a thyroid scan. All of my labs came back normal. I again brought my symptoms to another doctor’s attention. He looked at my nails and said, “They are thick as nails, I don’t see what you are talking about. Your skin, you’re just aging. Drink some more water.” I was 30 years old. This was not typical dryness that comes with aging. My skin was slowly losing the ability to sweat and seemed to continue to lose the life out of it. I had always been or been able to tan and now I would just get red blotchy skin that burned when I was in the sun. But he was the doctor and so I believed him. Knowing deep down something inside my body was going terribly wrong. I didn’t want to admit it however because there was “no way I could have a disease. Not me.” Maybe this was all stress. Just like all the doctors told me. After all, I don’t have a medical degree and I am prone to being high stress. Test after test after test was run and all results continued to come back normal.
As time progressed more things began to change dramatically. Suddenly I was no longer able to stand for more than a minute without my legs and hands turning bright red and blotchy and throbbing with pain. When I would sit, the redness would go away. I couldn’t stand for more than a few minutes without having to move because the pain was so bad in my legs. Clearly blood was pooling in my extremities. My heart would race when I would stand or even move the slightest bit. For example, my heart would race if I simply rolled over in bed. I went to a cardiologist who ran many tests and again I received a clean bill of health. The blood pooling in my legs and hands and my racing heart based on my position was attributed to panic and anxiety attacks. He was the doctor. I knew however that panic attacks were not related to ones position. But he was the doctor. I continued to know that something was wrong but because the doctor said I was fine I just deemed myself incompetent of knowing what was going on with my own body. I succumbed to the idea that I was just “that stressed”. At the same time I knew I was lying to myself. I began to feel very alone, minimized, unheard and terrified that I had something that no one was going to figure out. I felt insulted as if I did not know that my body was going through major changes. A body I had lived in for 32 years at this point and others were telling me nothing was wrong. I felt completely lost.
More time went on. My hair continued to fall out. My skin continued to get worse and then suddenly I broke out with a butterfly shaped rash over my cheeks and nose and a rash on my neck. I thought to myself, “Aging really is terrible.” I went on my way. Continuing to feel as if I ran a marathon after doing the smallest of tasks like brushing my teeth. I continued to tell myself I was just so completely stressed that my body just didn’t know how to function anymore because that is what the doctors told me. More time went on. I began noticing that I would completely lose my vision when I would stand up. My vision would go grey. I would get dizzy and my heart would race. I started asking others if they experienced this and it was always attributed to “head rushes”. But every single time I stand up? I brushed it off. I then began to notice that the veins in my hands were turning bright blue and would sting horribly. This was not normal, at all. I continued to grow increasingly afraid. Afraid of my own body. Afraid that there was no one who could help me. I was beginning to give in to the idea that I was going to die. Literally.
One day I remember asking my husband if he turned the temperature down in the refrigerator because everything that I touched in there suddenly was like submerging my hands in ice. My fingers would throb and turn bright red. My body suddenly began to feel frozen on the inside. I would shiver from the inside out. When I was outside my body felt sunburnt on the inside and my skin would immediately turn bright red and burn. I blamed it on the Houston heat and convinced myself my husband was turning the temperature down in the refrigerator. I also tried to tell myself that I was just working out too hard as I was doing Crossfit outside in the sun and so my skin burned. I justified every terrifying symptom and made up what ever I could to try to make some sense of this. Because “no way did I have a disease.” I was doing everything to deny that something was happening within my body and like all the doctors said, I’m “just stressed”.
I saw another doctor who listened to my symptoms. He ran a thyroid panel again and all was normal. Again, my bizarre and very real symptoms were brushed off as anxiety and stress.
A very real tragedy in all of this is that I did have a history of severe anxiety disorder specifically surrounding health at one point in my life, along with other things, as stated previously. Therefore I was suddenly “the boy who cried wolf”, and I knew it. The most perfect and painful storm. I know anxiety. I know depression and I know it well. This was not any of that. No one believed me. I started to feel crazy, isolated and more alone. I stopped telling my family and friends the symptoms that I was having because my anxiety history was always brought up. I fully understand now, though I can’t help but feel frustrated about it once I was finally believed by everyone YEARS later. Correction: Beyond frustrated. Angry. Hurt. Betrayed.
More time went on and I noticed that I lost all ability to sweat. I couldn’t sweat. I couldn’t cry. It was as if all my moisture glands in my eyes and skin just dried up. I started falling asleep in class and at work. My daily goal was to get home just so I could sleep. I began waking up in the middle up the night breathing rapidly. Not that of a panic attack type rapid breathing. I wasn’t in a panic. I was just breathing fast enough to wake me up. Again, I went to the cardiologist. He then acknowledged I have some sort of circulation problem as he stated, “Your legs are bright red and your heart rate won’t go below 100 bpm.” I already knew all of this. I had already brought this to the doctor’s attention a year before. It took a year for one doctor to acknowledge what only one thing that I already knew. I was told to drink more water and eat more salt as it may be POTS (postural orthostatic tachycardia syndrome) and if I didn’t get my anxiety under control I would give myself a heart attack. Again, I felt dismissed with no real answers. Why was my blood pooling? What was POTS? Why wasn’t any further testing being done? What causes it? Why at 32 did I have circulation issues that bad? I also thought, “If he truly thinks my anxiety is that bad, how could he even say something like that to me?” I felt suffocated that no one believed me. I felt that something very sinister was happening in my body. I knew something was happening within my body. It is truly amazing that the body absolutely knows when something is wrong and sends messages to let you know when something is amiss. I actually find it fascinating.
I then began getting sick a lot. I had many bouts of what seemed like food poisoning several months in a row and became seemingly allergic to many foods I had eaten for 32 years. My neck and face continued to break out and it was diagnosed as rosacea. There is no test to determine if that is what it really was, just a medical opinion. I soon began noticing that my arms and legs would fall asleep for no reason whatsoever, no matter what position I was in. My muscles would contract without me voluntarily doing it. I would have to forcefully focus with my mind on relaxing my muscles just for them to become rigid several seconds later. I went to another doctor who stated that this was clearly all stress and anxiety related. He stated that I needed to see a therapist and get on psychotropic medications. I couldn’t believe that no doctor would acknowledge me and realize that of course at this point I was depressed and had anxiety. No one was listening to or acknowledging my very real symptoms. All I could do was suppress my emotions and research the affects of stress, as that is what the experts told me, with conviction, that’s what was going on.
More time went on and my feet and hands started to burn, turn purple and sting even worse. They felt like they had electric shocks shooting through them. My eyes became so dry I could no longer wear my contacts. My vision also changed. Straight lines became wavy all the time. I was seeing double. Lines such as borders would vibrate and look hazy. I was terrified. I went to another doctor who checked me for diabetes and many other things. Clean bill of health according to the tests, again. And again I was told, “You have stress.” I was so scared at this point. I simply denied to myself that this was all happening because everyone else was. Though I still knew something was terribly wrong. I started waking up feeling completely dehydrated and not breathing. One doctor suggested I had sleep apnea but did nothing further. Why not? I was waking up with the feeling that there wasn’t blood getting to my head and thinking in my dreams, “why are you not breathing?” I wrote it off. Everyone else did. What else could I do? I felt so alone. The only way of what felt like surviving was to believe what the experts were telling me and continue to deny what my body was telling me. Completely betraying myself, again. More time went on and my breastbone and ribs would get extremely sore and painful. I had no idea what it was and so I told myself it must be how I was sleeping. My hair continued to fall out. I went to another doctor who told me I might be deficient in vitamin D but ran no tests. She told me stress could also make my hair fall out. Dismissing all of my other troublesome symptoms, again. Soon I started to notice that I could not remember things. I would literally be driving and forget where I was when I was on my way to a destination I went many, many times before. I had trouble remembering what I did several days prior and I always prided myself on my memory. “I must be so stressed”, I thought. “My memory is now going bad.” I also started to notice that when I would be working with clients I was unable to articulate my thoughts. I had trouble finding the words. It was as if I couldn’t even speak or remember what I was going to say. My left hand began developing a tremor. I attributed this to drinking too much coffee which must be causing stress and leading to anxiety because that is what over seven doctors at this point had told me. All I could do was attribute everything to stress and anxiety.
More time goes on and there would be times that my legs would just give out and I would just fall. I had no feeling in my legs and so I just fell. I began noticing I had to think about how to step forward or which leg to put forward when walking down steps. Random little rashes would crop up, attributed to bug bites by everyone I asked. My skin continued to burn at the slightest touch. My muscles would hurt so bad I had to keep them tense because to relax them actually hurt. Stress? Anxiety? Panic?…………………………………..I had had it!
My hair continued to fall out and all of these symptoms continued and progressed for three years. One day I told myself, “That’s it! I’m getting online to figure this out.” I knew I shouldn’t but no one was helping me and my body was screaming, “Something is wrong!”
This is the moment the dots began to connect. Staring me right in the face was Lupus or some other similar autoimmune process. Every single unexplainable symptom, every bizarre symptom was all right there. Staring me in the face. The red rash on my face is a hallmark symptom of Lupus known as the malar rash. The rashes that were cropping up show up in autoimmune diseases of all sorts. The dry eyes and skin to the extent that it was is classic of Sjogrens Syndrome. Even things like my breastbone and ribs being in severe pain were commonly experienced amongst those with autoimmune diseases. But most of what I was experiencing are considered “non-specific” symptoms. Meaning they are not within the set criteria to make a diagnosis for the disease, though they often, very often accompany these diseases. Therefore, if you do not fit into the set criteria for these difficult to diagnose diseases, which in my own opinion are not at all well established based on symptomology, then you are not diagnosed and aren’t treated. I had every single test known to man at this point except a test that may or may not determine if I had an autoimmune process going on (confusing, right). No one ever suggested it.
I grew up hearing how many people in my family had Lupus and my stomach suddenly sank. Both my mom and dad also have autoimmune diseases. Was it Lupus? I didn’t know. Clearly it had to be something autoimmune. It was all right there. But this was still just the unreliable Internet of course. Denying the best that I could the history of Lupus in my family and some of the hallmark symptoms I was experiencing, I quickly made an appointment with a dermatologist. I told him, “I think I have Lupus, here are my symptoms. Help me and hear me.” I was in tears and he told me that if I had Lupus I would have a positive antinuclear antibody (ANA) test. He failed to say that people could also have a positive ANA and not have Lupus. So all I knew was that if it returned positive then I had it. He ordered the test and for the next week I was in sheer terror. This would be the 14th doctor I had seen for my symptoms in 3 years. All being dismissed and given no explanation other than stress and anxiety.
It was a Friday at 4:30pm at the end of the workday. I’ll never forget it. I got a call from the doctor’s nurse. Not the doctor…….. the nurse, who asked me if the doctor had called me. I knew right then it was positive. No, the doctor had not called me. She proceeded to tell me over the phone………at the end of the day……..on a Friday………. at 4:30pm………..and told me that my ANA was positive and I needed to see a rheumatologist because I could very well have Lupus. All I thought about was hearing how my great aunt passed away from Lupus and the things I had unfortunately read online that week and the prevalence of Lupus in my family. I asked to speak to the doctor. I never received a call back. Not even the following week. I left work. I couldn’t focus. I was angry, I was furious, I was terrified, I was alone and I didn’t know what to do. I knew something was wrong and all this time no one would acknowledge it because they could not “see” it. I cried all weekend until I got to my PCP just to get a referral to a rheumatologist. I went in to see the doctor and informed her of my battle with these symptoms for three years without any relief and that my ANA came back at a positive high titer. She looked blankly at me and stated, “You are not medically unique. You do not have Lupus. I’m going to recheck your ANA because if it is a low titer it doesn’t mean anything. And all those symptoms you listed, I have those too.” I couldn’t believe it. I left in shock. “Did she really just tell me I was not medically unique? As if I want to be? As if I want to have Lupus?” I was disgusted with the lack of professionalism and lack of care. Again, I had to wait a week to get the results because I make up that she didn’t trust that my ANA was positive. Though she could have easily received my records from the dermatologist with my consent. She called me while I was on vacation with my family and states almost frantically, “Your ANA is positive and its high and you need to get off the phone with me now and call a rheumatologist immediately! You were right! You said you knew something was wrong!” If I hadn’t already been traumatized from doctors dismissing me and insulting my own knowledge of my body………I was now. I left Maine early and immediately got into to see a rheumatologist. He took 15 vials of blood and I waited another two weeks to get the results. Everything was negative except my high titer ANA and very low Vitamin D. He suggested an autoimmune disease called Sjogrens Syndrome and so he ordered a lip biopsy, which was negative. I left frustrated and completely lost. Here I have all these symptoms and antibodies against my own self and because there were no other identifiable specific antibodies or extractable antinuclear antibodies (ENA) a diagnosis could not be made and treatment could not commence. I had no choice but to search for people who may have the same experience. Much to my dismay, I could only find a handful of people who didn’t have an experience like mine. I learned through my own research which my doctor did acknowledge that the ENA for these diseases show up in around 50% of people for some autoimmune diseases. Others only in around 30%. And in some even less than that depending on the disease. Amazing. Unacceptable. This leaves an enormous gap of people that have autoimmune diseases but no ENA other than ANA. I have spoken with many people who have had terrible symptoms with a positive ANA for years. It took years for other antibodies to finally show up just to get a diagnosis and finally get treated. That seems to be the trend with these diseases, other identifiable, specific antibodies can take years to show up though the person may very well have the disease when symptoms are present. It is clear that many antibodies have not even been discovered as the percentage of people with those already identified antibodies is unacceptably small. The research is lacking and people are suffering, daily. Mostly because of the major lack of funding and awareness.
Over the next year and a half my symptoms would persist and I had to cut back on work. Honestly, I cut back on work because I was in so much fear that I would never be diagnosed and treated, and that I was going to die. It was literally as if I was waiting to die. The thoughts that no one talks about that went through my head? “My life is really over. Who will ever love me with a disease? My life is truly over……… I can never do the things I wanted to do with my life. I hate myself, I hate my genes, and I hated my family for passing on these genes. I felt like a monster. Every person I saw when I went out I only envied that they were not sick (though I had no idea). I started to view life as if it was the end of my life. Several times, I welcomed it.
I had to find ways to cope. At the same time I felt like I was denying my own self of it’s reality. I would wait for the next doctor’s appointment sadly hoping something would show up just so I could get help and have a name for this and to be acknowledged. I saw several other rheumatologists simply for other opinions. One stated that my blood was diseased, just not diseased enough. “Diseased enough? What does that even mean?” Another rheumatologist acknowledged my symptoms and blood test results and seemed hesitant to blame it on anxiety, though she did anyways, as she stated, “You’ve probably heard this a lot before…….. but I think you have a lot stress and anxiety, and I think that is what is going on here.” It almost felt scripted for when there is something going on but it can’t be identified perfectly within the criteria that is within the medical books. She almost looked ashamed to even say it to me. I spoke with many people over that year and half and again they all had very similar stories of feeling dismissed, being deemed a complainer, a hypochondriac, stressed, being psychosomatic and having anxiety disorder. At this point I did have full-blown anxiety. I went for my follow-up rheumatologist this past fall and had the entire work-up done again as it had been a year. Finally, something in my blood showed up other than ANA. The lupus anticoagulant came back positive, which is part of the set criteria for lupus. Terrifying for me to say the least however a huge piece of me was relieved to have an answer. My doctor suggested it was most likely a false positive as there are many false positives. He stated that if I was concerned I needed to see a hematologist. I felt so let down, but not by my doctor. I felt let down by medicine, by science, or lack thereof, and by these “diagnostic tests.” Of course I went on to a hematologist who listened to me and re-tested me for the lupus anticoagulant. There are several signs and symptoms that go along with this syndrome, which is known as Antiphospolipid Syndrome. I had not had any blood clots or other criteria. I did however have a rash called livedo reticularis that would show up in the slightest of heat and in the sun. This was something that never happened to my skin before and also another sign of autoimmunity and criteria for Lupus, photosensitivity. It can also occur in Antiphospholipid Syndrome. He re-checked it and of course it came back negative. You would think I would be happy. But the story appears to go that these antibodies come and go, show and disappear and may never show up. It’s like a terrible game your body is playing with yourself. I showed him how blood was pooling in my legs and how it would return to normal when I put my legs and hands up. He stated that I was “just red.” “Just red?!” I have never been “just red”. What does that even mean? This was not normal and I continued to know it. It had already been established a year back that I had circulation issues and possible POTS. This syndrome causes blood pooling from circulation issues and an increased heart rate upon standing due to autonomic nervous system dysfunction, which I had to find out on my own. An umbrella of symptoms commonly found amongst those with autoimmune diseases especially Lupus, Sjogrens and Antiphospholipid Syndrome. I wasn’t just red. I clearly had a circulation issue going on that had been acknowledged yet nothing was done about it.
Lastly I noticed that my fingernails were getting what are known as splinter hemorrhages and I was having micro-hemorrhages in the cuticles of all of my fingernails. My rheumatologist then acknowledged some process is going on. He acknowledged Raynaud’s Phenomenon, a common symptom with autoimmune diseases, when he saw that my fingernails were white and purplish and I had micro-bleeding in my nails. Stress……………………………..…anxiety………………..…panic……………………..….depression……………………………NONE of these mental ailments cause small blood vessels to spasm and hemorrhage. Finally I had something someone was concerned about that they could actually see. He very much acknowledged that. I also showed him my legs and he too acknowledged an autonomic nervous system dysfunction taking place. All of which again go along with autoimmunity. I was referred to a Cardiologist and a Neurologist. I saw the Cardiologist who confirmed Raynaud’s Phenomenon however did not acknowledge any autonomic dysfunction. I know my rheumatologist knew what he was talking about and I felt that this was just another dismissal from the cardiologist perhaps because of a lack of awareness about autonomic dysfunction as well as poor understanding of autoimmunity. He tested me for peripheral artery disease, looked for blood clots and checked my heart. “All is normal I was told.”
March 28th 2017, I saw a neurologist. Amazing man. Just like my Rheumatologist. He listened. He looked at me……….he said…………..”systemic lupus.” He helped explain to me in a very professional and respectful manner that my rheumatologist was most likely waiting to watch for any major organ symptoms before making a diagnosis. He acknowledged his sending me to get everything checked out and stated that unfortunately with autoimmune diseases it is a wait and watch but at some point, its “Ok. We need to treat this.”
I’m tired of going to doctors and it’s taking a huge financial and emotional toll. Then I started to reach out to Universities and labs engaging in cutting edge research for all autoimmune diseases that I had been watching for 18 months. I had the absolute honor of being able to spend two hours with a lead, highly-respected, highly-honored Medical Doctor (not that the others I have had a positive experience are not) specializing in Rheumatology and engaging in phenomenal research at a very prestigious University. Within minutes of intently listening to my story and hearing of my lab results, without hesitation…….again, “systemic lupus, or pre-clinical systemic lupus”. Without hesitation, he stated “you have the criteria all right here.” There it was. Three doctors finally…..finally….after 6 long years, acknowledged what I knew I had. I imagine I have Sjogrens as well, however it may be years for antibodies to show up or they may never show up as I have classic signs and symptoms of it and Sjogrens and Lupus usually team together.
My neurologist ordered numerous tests as he was able to SEE without me knowing he was looking that my leg muscles would not relax. I went in for nerve conduction studies, and EMG and was checked for other autoimmune diseases such as stiff person syndrome and myositis. Upon follow-up I received news that my blood work showed elevated CPK which is an enzyme found in the muscles. He explained my muscles were involuntarily working too hard and though my EMG was normal, I now have mild Myositis. I had told all of my doctors for years what my muscles were doing. Nothing. A CPK test was never checked before. Based on my neurological symptoms I am not awaiting an MRI of the brain and cervical spine to check for inflammation from lupus in my brain and brain damage. I couldn’t believe it. Myositis, lupus……….6 years later. Why? WHY? It has been acknowledged that it is mild. however I no longer trust or no what to believe when it comes to my health. I was then prescribed what I have been dreading this whole time. Immunosuppressive drugs. Making me susceptible to infections and cancers.
It has been a game of wait and watch, and do it in pain. Once my doctor, my rheumatologist, who is a great and intelligent man saw, actually SAW my symptoms, he acknowledged something was taking place. I finally felt heard however wanted to scream to the world why it had to take 6 years of pain and terrifying things happening to my body just to be acknowledged that something autoimmune is going on. And to have come across so many unprofessional, disturbing physicians within the field that are not up to date on research. There are literally hundreds of thousands if not millions of people with very similar stories.
My mission in creating this site is to bring not just awareness but most importantly solution to these cruel diseases where the body turns against itself that many people seem to not know about. Many others are unaware that they can be very harmful and many potentially life-threatening. Science, medicine, research has to excel in this area. Quickly. I refuse to fall through the cracks. No one should fall through the cracks and no one should have to wait for something catastrophic for something to happen to be treated. This unfortunately happens often. No one should ever have to suffer this way or go to great lengths to prove that they are ill to get treated or simply acknowledged. However, even then, the treatments for autoimmune diseases come with many dangers. Right now it’s a lose lose.
I may have had to grieve my “old self” for quit some time now however I will not lose my grit, my drive for solution and who I am as an individual. I am a passionate and compassionate person who will not waste one more moment of my life feeling bad for myself or waiting for another doctor’s appointment or being hard on myself or doing nothing. I will take action and I will do it with intensity. My passion, my hope, my goal is to raise awareness but the most important to raise the money needed for those trying their absolute hardest to discover cures and better treatments for the millions of us that suffer as the only current medications are those that suppress the immune system leaving the individual susceptible to all kinds of infections and cancers which is completely negligent in my opinion. Please help me on my mission to raise awareness to the general public as well as the medical community, and most importantly FUNDS for those working so hard to desperately find cures.