(BLOG SERIES/PART 8: GETTING LOST IN THE GOVT LUPHOLE…LIFE WITH LUPUS AS A US CITIZEN) “O Canada! Our home and native land! True patriot love in all thy sons command. With glowing hearts we see thee rise, The True North strong and … Continue reading
(BLOG SERIES/PART 7: GETTING LOST IN THE GOVT LUPHOLE…LIFE WITH LUPUS AS A US CITIZEN)
***To hear my heart behind these LUPhole series writings, click HERE***
“There may be times when we are powerless to prevent injustice…but there must never be a time when we fail to protest. “(Elie Wiesel, prisoner & survivor of Auschwitz–Nazi German concentration camp)
It’s ridiculous that it’s taken me SIX re-writes to get this blog out. Fighting against injustice of any kind has a way of slowly silencing you and weakening your voice one defeat after another. Anytime I want to speak up, it feels like I’m superman around kryptonite and I feel so powerless to do anything, and just go numb. But, I KNOW I must speak up. I KNOW I am not the only one who has experienced these injustices. And, I KNOW if I don’t speak up, then how will YOU know?
So, here is my voice. Here is my protest. Here is my story and with it…my hope to bring change for good.
How do you make a blog interesting when the topic is about healthcare and health insurance? Well, THAT I am unsure of how to do, but what I can do is ask YOU, the reader to be willing to take a few minutes to read about my story, NOT for my sake, but for the sake of all those who do not have a voice…and it is for THEM I speak and also the reason I share. (Ever so kindly, I thank you!)
Let me introduce you to some of the MAIN characters of this story of mine:
- Broken humanity
- Me & Stupid-Lupus
- Former Corporate headquarters job with full-medical benefits
- THE OTHER SIDE
- The nightmare begins…
- Unspoken stories of a broken heart & a shattered dream
- US Government-Obamacare/Marketplace Call-Center Reps
- Medical Providers bullying us out
- Disability case snags
- Our leaders
- And…LOVE HEALS<3
NUMBER ONE: Ok, to start the story off right, it’s important for you to know that God is the most important character in my forever-story and though I may want to have a few chats with him about WHY He’s allowing me this long road of suffering, I trust that there IS purpose in the pain and that greater good will come out of it all.
NUMBER TWO: God is NOT the one causing my pain. There IS an enemy of my soul. (READ the book of JOB in the Bible…quite insightful.) We live in a broken world with broken people and broken bodies; a world also with good AND evil in it. And—NEWSFLASH—our bodies aren’t made to live forever and do break down with disease and old age, too.
NUMBER THREE: For purposes of this blog, the “ME” character will highlight the effects of a major disease I battle each day called, “Stupid-Lupus” (ok, it’s not really called that, obvi—just what I do ; ) It’s a life-threatening autoimmune disease that attacks my own body with most of the damage done on the inside of my body outside of minor complications such as skin rashes, sores in my mouth/nose, purple-white hands & feet, etc. You can read more on my blog about it.
NUMBER FOUR: Once upon a time there was a girl named Lara, who worked full-time at her financially secure salaried job at the Corporate Headquarters for her organization in Nashville…a job where she had full-medical coverage through a group plan at work and although she still had to pay CRAZY high premiums for it, she nonetheless could go to any doctor/specialists of her choosing without any discrimination as to whether (and how) they would treat her or not due to her financial status and poor government insurance. But, then la-la-land story comes to a screeching halt when Lara has to leave because of Stupid-Lupus…
NUMBER FIVE: The story continues where Lara wakes up…on the other side. Maybe you already know what the other side is because YOU are already there, but many of you are like I was…completely UNAWARE of how many suffering people there are experiencing the injustices that I would soon find out about, firsthand. Many of you feel you don’t need to know how life is for those on the other side because YOUR side is ok., but please know that IT DOES MATTER…because PEOPLE MATTER. (And, the reality is that one day, out of the blue…it may be you.)
NUMBER SIX: The last day of my corporate job was Friday, February 28, 2014 and seemingly overnight when the next morning hit—my 1.6 month nightmare began. It was like I closed my eyes and when I opened them, I was greeted by hell. But, I love what my friend Christa Black Gifford says about this, “When hell comes at you from the outside, it’s heaven in you that keeps you together.” IT IS TRULY HEAVEN IN ME KEEPING ME TOGETHER. (You can read more about my nightmare journey in the blog series)
NUMBER SEVEN: The emotional contribution of grief/heartache from the unspoken stories of a broken heart and a shattered dream…stay tuned to my blog.
NUMBER EIGHT: “The United States Health Care is broken…but don’t let IT break YOU”…words spoken to me by my oh-so-wise Canadian sister when she found me crying a river after having spent the afternoon with many of the Obamacare/Marketplace representatives trying (unsuccessfully) to get a Health Insurance plan that would meet my basic needs. Because with a life-threatening disease that requires meds, ER visits, and a specialist monitoring you…you kinda just can’t avoid the whole health insurance thing. Oh, I wish I could! Would’ve saved me lots of drama (and trauma) ; ) And, there were times during this last year and a half when I couldn’t afford insurance and where I was literally fighting for my life. Not a good feeling.
Now to GET insurance when you have NO income coming in…yeah, kinda a problem. I had saved months salary to use after I quit my job due to my health, but ended up using it quickly on my medical expenses, as they were out-of-pocket. (My meds alone cost $500/month and to see the doctor with required testing cost $700-$800 a visit and some of these meds were monthly ones!) My first experience with calling the Marketplace (Obamacare headquarters, i.e. call/computer center) was just a foreshadow of the zillion hours of headache, pain, and tears dealing with them for the next 1.6 months (which means…unfortunately STILL have to deal with them—my stomach just got sick writing this!) I could write a book about all the horrible experiences, but I’ll stick to saying how horrifying it is dealing with this system. Why? It’s broken. Literally. The actual computer DOESN’T save your info which makes for astronomical mistakes, like cancelling a whole group of Obamacare insurances such as the one I had—out of the blue! Because the computer DOES NOT SAVE anything… it’s horrible. And to try to fix it…I spent 4 hours on the phone with 10 different representatives (2 of which were conferenced called in from my insurance-reps), hung up on twice and had 3 different applications “saved” for my file. One of them CANCELLED my insurance. OI, VEY! I’m shaking my head and am going to stop writing..’cause it’s just too much.
YET, I STILL NEED HEALTH CARE…
NUMBER NINE: The concept of Obamacare is a good one. Except those in power are not making it work. The providers are banning together (not literally) to bully us out because we are technically the poorest and often times, then the sickest…who aren’t paying their bills. So, they just won’t take our insurance. Easy solution for them. And, if they do, there is ALWAYS an issue with them…like scamming you and taking advantage of you and won’t see you unless you pay xyz amount in cash/credit first. WHY? Because they CAN and no one is doing anything about it. AND, they know you need them. If this were happening to the daughters of the President/Congress…oh, wait—THIS WOULD NEVER HAPPEN TO THEM. But, somehow it’s ok for someone ELSE’s daughter and someone of the lower-income.
It’s hard to imagine this to be true, but it is…although I have insurance (and who knows how long I will before the system cancels me again or my state leaders decide those who need it the most won’t get any help because they are too poor—true story), I can not get a Rhuematologist to see me. There is actually only ONE AVAILABLE in my whole network provider directory (wrap your mind around that one!) and it’s not even an IN-NETWORK one. For me to even get an appointment with this doctor, I need to send all my records for her to review before she accepts me and then if so…she is scheduling 8-9 months out?! Oh, and just before I came to Canada for the summer, out-of-the-blue, my new primary care doctor (switching all your doctors too is a whole other topic and headache) just shut down and skip town. SERIOUSLY…what on earth?! I also got results back from an MRI with a large “concerning” cyst in my shoulder, yet how do I even get that taken care of?? Oh and am also way overdue for my 4th surgery to clean out my belly full of growths/tumors…and what do I do about that? The list goes on and on. So unsettling. Why does it have to be so difficult? Human lives should be cared for and basic needs should be too. (There ARE systems in the world like this…that ARE caring for the people, i.e. CANADA—I’ll share more later.)
NUMBER TEN: DISABILITY case snags. One of the big snags and reasons I’ve been denied twice for disability is the fact that I haven’t been seeing a specialist regularly. Just shaking my head at all this! It’s because of the long disability process that I can’t get any unemployment benefits…so no income…can’t work…can’t afford health insurance…yet, NEED to be seeing a very expensive specialist regularly? And, also I need a specific test for my hands. Again…something else I’ve tried to get a doctor in the States to give me. It’s just so broken. All of it.
NUMBER ELEVEN: Our leaders. The power to make changes in the brokenness of our Health care is with our leaders, but the power to elect WHICH leaders is OURS. I could say more about how grievious it was to find out this April that some of my state leaders in TN opted out of the Affordable Care Act which would have helped ALL citizens get help with insurance. Now, anyone who makes under $11k a year get no help…a choice made clearly out of greed. God have mercy. Please be knowledgeable of who you are electing, especially with an election coming up. No THING should ever trump humanity.
And, with the topic of humanity I will choose to end my story today.
Thank you for taking the time to listen to some of my experiences of living with Lupus as a US citizen and how falling through these devastating government loopholes has negatively affected my life and so many others!
If I had a solution to all this it would be boiled down to two words, two ACTION words that each one of us can contribute towards daily in making a better community around us and looking out for the needs of those around us…
(P.S. If you would like to donate to help with my healthcare/living costs, you could do so by clicking the “DONATE” button here on my “ABOUT ME” or website: www.caterfly.org THANK YOU!!)
*Disclaimer-I’m not an expert, nor am I a politician, but a law-abiding citizen of the United States, who has experienced these things firsthand. My aim in this blog series is to bring awareness in these matters and not to debate or argue about them. I would ask you to kindly refrain from doing so here, as well. However, I DO welcome constructive comments regarding your own experiences and also ones that will help the overall betterment of our people. I sincerely THANK YOU!
(BLOG SERIES/PART 6: GETTING LOST IN THE GOVT LUPHOLE…LIFE WITH LUPUS AS A US CITIZEN) I just need to get something off my chest about this whole LUPhole series… I understand it has not been fun and uplifting reading…because it … Continue reading