Insurance Nightmare #6,372!

I’m a 45 year old involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 11 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger. They have all suffered to some degree due to my health, but the older two weren’t strangers to that, since we lost their father to melanoma skin cancer that spread to his lungs and brain. Now I am left being a professional patient, and knowing what my late husband went through. Likewise, I’m terrified to leave the one daughter who won’t have a parent left, alone in the world. I have learned which family isn’t family, and which friends are, and I do feel hope and confidence in the few people who already care about her, and I know she will never be alone. She’s a fighter. Like her dad combined with me, which I’m not going to lie, is a bit terrifying at times. I was approved for social security disability due to a very rare autoimmune vasculitis, Churg Strauss Syndrome. It is diagnosed in only one out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. In connection with this condition, which often occurs in people who have had a lifetime of allergies and asthma, and been dependent on Singulair and or prednisone, I also have severe asthma with refractory bronchospasms (meaning it does not respond to most medications), hypertension (which becomes pulmonary hypertension during a flair), and most recently, drug induced “pre-diabetes,” if you believe in such a thing. (I consider that the equivalent of being a little bit pregnant.) It has been an incredible journey, both from the beginning until diagnosis, which took approximately three years, from the time I knew what it likely was. Seven years from when the first symptoms began in 2008, and since diagnosis, learning to navigate the terrifying world of government medical insurance coverage through Medicare, and trying to find qualified physicians who are willing to take me on. i’ve had to learn quite a bit about medicine having such a rare condition, which makes me a difficult patient. But my best doctors are the ones who are not offended by my knowledge, and appreciate that I understand, as well as being willing to help when I want to understand more than the average patient. I asked more questions. I make more suggestions. But I am so grateful to those doctors. They have saved my life more than once. I had four surgeries for my sinuses in 2009, 2011, 2012, and 2015. Whatever the ENT did differently during the last surgery seems to have helped significantly and I have not had another one. I still get the infections, but at least the polyps have slowed their growth. I died once. Many years ago. Due to an allergy attack that turned into life-threatening anaphylaxis. Nobody even told me my heart had stopped. I was looking at medical records later and noticed one said cardiac arrest. It seems like that’s something they should maybe tell you, right? My condition is sarcastic and ironic. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s). And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring. Especially when you are in my life, and the adventures that nobody can ever believe happened to me. Follow along, and you will begin to understand eventually. A sense of humor is definitely a requirement. If you don’t have one, this is not the blog for you. My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can at her school. I can’t get fired from that, and after volunteering one day, I can take another day or two to recover. Rather than posting novels as Facebook statuses, I decided to take a stab at blogging. It’s always an adventure. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was. Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine. View all posts by Gladys D. Smith-Mangan