The Journey Begins by Jeanie Marty
Almost 18 years ago I was surprised to know I was carrying my third child. Health issues quickly began to complicate my life in incredibly massive ways. My pregnancy was plagued by great difficulty. From the beginning, I was put on 24- hour IV infusion for nourishment for both myself and my unborn baby. The complications with the pregnancy persisted, and daily nursing care at home was needed until my 2nd trimester. I then contracted two bacteria's in the blood stream that led to me going into full convulsions from the high fevers. I woke up in the ICU to find doctors scrambling in a hurry to prevent my baby from being delivered at 5 months.
During my 40 day hospitalization I developed double pneumonia and a blood clot formed which later shot off into my lungs. The medical staff's overall prognosis was negative with the chance of survival for the unborn child being slim to none. These complications led to the unpreventable premature birth of my son a week shy of 7 months. The delivery was challenged by physical weakness, the inability to breath on my own without support, and heavy blood loss from the blood thinners. Nonetheless, a feisty thin-skinned preemie would supersede every expectation. He would truly prove to be a miracle baby. I was discharged from the hospital weeks later weak and still burning with fever, but anticipating a healthy journey ahead with my new born baby, husband, and two other children.
Within two days of returning home, I was rushed immediately back to the hospital, thus beginning the cycle of constant hospitalizations which would continue for years. The cause of my medical symptoms were overwhelming and confusing to all. High fevers, abnormal blood counts, breathing complications, weight loss, enlarged lymph nodes, rashes and numerous infections would persist. I quickly, became familiar with every hospital in New York City. However, even the greatest experts were baffled with my strange case. Eventually, after two years of grueling tests, hospital stays, surgeries, biopsies, and wrong diagnosis, I would finally be clearly diagnosed with Antisynthetase Syndrome; a rare autoimmune disease with connective cancers and other diagnosis. Finding answers can be satisfying unless those answers come with little to no certainty whatsoever. In the later months the secondary diagnosis associated with Antisynthetase Syndrome of Myositis, interstitial pneumonia and lymphadenopathy followed my prognosis. This disease attacks major organs and progresses with one complication after another. The lack of immunity also leaves you open bait for cancers to invade your body; cervical cancer was one of the first cancers I was diagnosed with. At the time I was already undergoing chemotherapy treatments.
There is no cure for Antisynthetase Syndrome. It is considered terminal. Chemotherapy treatments are used as a trial to stabilize and prevent further progression. Among the few studies available, it has been determined that the life span of an individual diagnosed with this disease is 5-7 years or sooner based upon the cancers that manifest. My son, that preemie, will be 18 years old in February of this year! Clearly, my life is not fully dependent upon this grim prognosis. I am in awe of the many times God has allowed me to defy the doctors reports and expectations. I no longer walk in the torment of when this disease will lead to death. It's easier to live in the now and leave the unknowns to God. We belong to the one who set the world in motion and all that is in it. Even while we are formed in our mother's womb the grasp of God does not relent. His eyes are always on us!
“Therefore, there is nothing that can take us away from our Creator. Neither death nor life, neither angels nor demons, the present nor the future, nor any powers or anything in all creation will be able to separate us from the love of God that is in Christ Jesus." Romans 8:38
Though the trials have seemed insurmountable and my faith has been shaken more times than I can count, His faithfulness has been proven to me every single step of the way!