It is difficult incorporating a lifelong journey without a diagnosis into words on a single page, so please bear with me. To say the least, I feel I walk alone. This road has literally, physically, mentally, financially, and emotionally drained me. But for every day I live, I must believe there is a purpose for what I am going through, and I must remain hopeful there is an answer as well.
I was born with bulging veins in my right leg only. It was slightly shorter than my left, as I have been told I grew into it. My grandmother, who raised me, sought a diagnosis when I was eight years old because my leg would swell, sores would appear without injury, and the pain and weakness were so debilitating that I could not walk for days then would return to normal. After an MRI, the doctors told her amputation of my leg was the only option to not have a complication in the future. My grandmother refused.
To this day, I still do not know what the doctors found for them to come to that conclusion, but there are moments when I wish she would have complied.
In 2009, I developed unexplained DVTs in my right leg, accompanied by cellulitis and PEs in both lungs. I was “normal” up until this encounter, and it was then my world, my life as I knew it would come crashing down. From that moment forth, I have been diagnosed with pericarditis, pneumonitis, diverticulitis, kissing ulcers, peptic ulcers, colitis, transient ischemic attack, multiple UTI’s, endometriosis, extremely painful menstruation, infertility, asthma, bilateral knee joint pain, chronic deep venous thrombosis of right popliteal (leg) vain, history of falling, history of leg weakness, chronic pain, dysfunction of sphincter of Oddi, dysphagia, esophagitis, non-alcoholic fatty liver disease, hemochromatosis, hepatic fibrosis, iron deficiency anemia, renal calculus, irritable bowel syndrome, extreme fatigue, chronic pancreatitis, prediabetes, high blood pressure, major depressive disorder, trauma and stressor-related disorder, vertigo, vitamin d deficiency, sepsis, and pyelonephritis, along with a back and forth diagnosis of lupus/fibromyalgia and multiple sclerosis; as well as undergone a cholecystectomy, total hysterectomy, right ankle surgery to remove a mass , right knee surgery to remove benign tumors and filtered with cement, and several ERCP’s, without an origin as to where these illnesses came from.
Over the past two years, my health has taken a rapid decline. I have been diagnosed with common, rare, and uncommon diseases, undergone a conglomerate of tests, tried lifestyle changes, physical therapy, and everything under the sun of practical/holistic medicine to no avail. I have seen many specialists; my doctors label me a “medical mystery,” and I feel they have given up on me. If I do not qualify or respond to whatever test, procedure, or treatment, I hear nothing from them unless I initiate contact.
My life is spent in my bedroom, constantly apologizing to those trying to understand but who do not quite understand my condition.
Within these two years, I have been declared homebound. I go from hospital to bed without improvement. The compassion of those who were around me, along with physician’s quickly faded away. And their tenderness turned into disgust. These people have called me a hypochondriac said it is all in my head, or I am faking my condition for attention because I look healthy on the outside. Family and friends have all disappeared. My life is spent in my bedroom, constantly apologizing to those trying to understand but who do not quite understand my condition. Unable to care for me, I now have a live-in aide and home-maker services for which I am grateful. Yet and still, every day, I can feel myself slowly dwindling away as my body aches for peace. Trying to remain sane within these four walls has been a battle and a very lonely road.
I am seeking to end the “medical mystery” label and receive a diagnosis and treatment, so I may live life and have life once again.
