DI am new to The Mighty, but, I don’t feel so mighty. I thing I handled life challenges well, considering what I’ve had to deal with.
I was born with Crohns Disease at a time there were no diagnostic tests and gastroenterologist did not exist. By age 14, I had symptoms of RA. But, no one believed me. I was an athlete, I hurt and felt sickly, from training everyone claimed. I knew that was not the case. I suffered for years. I nearly lost my career as a registered nurse because I never knew what days I might be able to work. After the 1976 Olympic trails, I hung up the skis and my competitive days were over.
It was 1994 before I was finally diagnosed with what was then named negative inflammatory arthritis and now called RA. The fact that I was seronegative, meaning my RA factor remains negative despite having the disease. Once I started methotrexate I improved dramatically. My Crohns Disease and RA went into remission for a short time. I was energized again, going to graduate school, becoming a nurse practitioner, and earning a doctorate of nursing practice. And, just as suddenly as I went into remission, it had a return of debilitating illness.
To date I have, in addition to the Crohns Disease and RA, developed hyperparathyroidism, Diabetes Mellitus, Hypertension, acute renal failure, recurrent small bowel obstructions, deafness, visual impairment, chronic pain that is uncontrolled, pulmonary emboli, restrictive lung disease and the list goes on.
The sicker I get, the more difficult it gets to find appropriate healthcare. I have an expectation that my healthcare be timely, safe, and effective. Sadly, that type of healthcare is gone forever. I am experiencing physicians and nurses who ignore me, say cruel and inappropriate comments and drag their feet with regard to prescriptions, medical equipment and diagnostic studies. My needs do not get met for months and only after I become angry and a pain in the butt.
Access to care goes far beyond having insurance. It is finding the physician who is responsive and nurses that are doing more than collecting a paycheck.
I have just lived through the worst 4 weeks of my life. My healthcare providers pushed me to the point of contemplating suicide. I was in severe, irretractable pain, vomiting for days, experiencing weight loss due to not being able to eat. I kept reaching out to my physicians only to be blocked from reaching them by answering services and nurses. I was abandoned and ignored in my time of need. So, I made a self referral to Hospice. Then and only then, did my physician check in. Now that I have his attension, I have to get his nursing to stop obstructing my care. Each situation I have to address, brings with it, the risk of being dismissed from a practice. Of course, the patient is always in the wrong. This patient was suffering beyond belief but expected to be happy cheerful and user friendly.
This is so wrong. It is what it is.