Members, from across the globe, the following information is the first in an every Wednesday event that I hope transpires & will urge members to participate in sharing their own personal stories with their invisible & silent chronic conditions & YOUR personal stories with battling your own chronic pain; seeing someone else suffer from chronic pain; being an advocate for people with chronic pain; working in the health care industry & witnessing this firsthand; and experiencing this all through other means! Member Tim Alexander gave us an insight into his wifes battle with chronic pain & his time as her biggest supporter & advocate. I really appreciate him taking the time to submit his story from a family and from an advocates perspective. Tims Letter: When someone is sick, especially with a chronic pain or an “invisible” illness they need an advocate to stand up for them in the medical community. So many doctors seem to be callous or unwilling to go the extra step to help a patient. Over the past eleven years I have been an advocate for my wife. Ive stood up to doctors who have accused her of faking pain. At times I have had to demand she receive proper medical attention. My wife is a strong person, but is non-confrontational. Both are good traits to have in general life, but sometimes a meek personality does not get you where you need to be when it concerns doctors, insurance and the government. Our journey in chronic pain began when my wife began experiencing severe abdominal pain that necessitated a trip to the emergency room. As is typical of many ER’s, she was told to go home and schedule an appointment with her regular doctor. However she could not even stand up straight. Knowing she needed medical treatment, and as her advocate, I dutifully refused to go get the car to take her home. The ER staff discussed calling a taxi, but after I refused to pay the bill and they realized that no taxi driver would provide transportation to a person in such severe pain, they finally decided to treat her. Tests showed two abdominal cysts the size of grapefruits that required surgical removal. Just over one year later the pain returned, but during the course of the year we had moved to another state where she had new doctors who did not understand that when she complained of pain she was REALLY in pain. We scheduled a “fit-in” appointment with her doctor at his office where she received a precursory exam from a nurse who did not believe she was having abdominal pain necessitating a doctor. My wife was then instructed to leave the exam room and go to the rather full waiting room where they would TRY to get to her sometime later in the day with no promises being made. However, I knew due to the nurse’s snippy attitude that once we got to the waiting room they would never call her back to be seen by the doctor and would simply send us home at the end of the day when the office closed and after the doctor had left the building. I was not willing to have that happen. Despite my wife’s objections, I sat down on the floor of the hallway and refused to budge until she was seen by the doctor. The staff discussed calling the police to have me removed but I refused to budge. Finally the office administrator invited us into his office, which was probably a bad move on his part because now he could not get any work done. However, thirty minutes later she was seen by the doctor who scheduled an appointment with a surgeon for removal of internal abdominal growth- a result of complications from the abdominal cyst surgery a year earlier. The new abdominal growth resulted in two grueling surgeries within weeks of each other. After the second surgery the surgeon told us she could not fix the problem and told my wife to go home and live in pain. Not willing to live with that prognosis, I requested that she be seen by a specialist in another state, but that doctor was not covered by her employer provided insurance meaning the cost would be entirely out of my pocket and we were looking at spending $50,000+. I visited with her employer’s insurance representative and asked for help contacting the insurance company to get permission for them to pay out of network and, unbelievably, was flatly refused. The representative stated she did not have time to waste on a fruitless endeavor. Being the dutiful advocate, I then called the insurance company myself and, of course was refused, but pressed until I was told that if I could prove every capable doctor in her network was unable or unwilling to provide the surgery needed then they would pay an out-of-network doctor. I researched to locate, then called every surgeon in the entire network who advertised the type of surgery needed and got their office to decline to see my wife citing her extensive medical history or lack of advance surgical procedures which could cause further complications. Every time a doctor’s office declined I called the insurance company back to report it. After about a month the insurance company caved and agreed to pay for the surgery. Another battle fought and won! What I have listed here are examples of advocacy during only the first year and a half of my wife’s ongoing medical problems. There are many more examples of times when advocacy meant the difference between treatment or (in my opinion) neglect. One unhappy doctor even told my wife she needed to divorce me because I was the source of her pain! However, that doctor later became one of our best allies. Advocacy continues to be an ongoing vital aspect of my job as husband. This year advocacy has already included writing letters to Senators and Congressmen then personally meeting with them to try to get action on federal levels to stop a government agency whose actions are harming and preventing my wife from receiving medically necessary treatment. Recently I testified before our states medical board. Every person suffering from a disability needs an advocate, whether it is a relative, friend or even an attorney. A person who is willing to stand up and fight battles is an invaluable asset and a must-have in today’s medical and legal environment in order to receive proper care and attention. by Tim Alexander I would also like you to check out an article concerning an 18 year old in Sydney who has many stomach problems & suffers from chronic pain because of these problems: macarthuradvertiser.au/story/2674612/chronic-pain-leaves-teen-bed-ridden-indefinitely/?cs=1437 by Tayarra Smith This last message, from Mandi Ashely Hogan states: Hello. This is such a wonderful page thank you! Wanted to share my story because I am living with excruciating daily jaw pain where I can only eat soft foods and cant carry on a conversation for more then 10 minutes without pain. No one gets it and its frustrating! My jaw disc is out because of a dentist causing it injury during wisdom tooth removal so I have this injury for life :( Not sure how Ill get by happy in life but Im fighting! Heres my story thank you! Please visit her blog which explains more of what she is enduring & going through with chronic pain at: mandiash.blogspot/?m=1 Members, sharing one anothers stories concerning chronic conditions and chronic pain-whether they are invisible, terminal, or silent can have so many advantages for every member of this page & for those people who check this page out. One anothers stories provides more awareness for our cause & the needed education for these invisible & silent illnesses & for chronic pain & its true existence. I urge all members to take part in this new series that will be shared every Wednesday. I also urge you to comment on these stories & share them with your own Facebook & other social sites so all of your own family, friends, classmates, co-workers, congregation members, physicians, advocacy groups, etc. can read about them as well. Please comment on what your thoughts are about these particular stories in the comment section. I am sincerely grateful for there openness & willingness to share their stories with our entire community, which is quickly approaching 6,000 members. Tim Alexanders perspective as a husband, family member & as a strong advocate really touched my heart & soul. He is a man of persistence, determination & knowledge which also displays his unconditional love & care for his wife & what she is experiencing. I will continue to pray for all of these people & all of you so that you are blessed with more days where the pain subsides, more free flare-ups days, more advancement in research for issues concerning chronic pain, & for the guidance & strength that is needed to continue down our journey in battling these conditions. If you would like to take part in this new addition to our page, please inbox me with your story so it can be provided for everyone to read & to experience before next Wednesday, November, 12, 2014. Our cause must go on & the best form of awareness & education is from people who have seen & lived through it! With love and care, Beni!
Posted on: Wed, 05 Nov 2014 09:47:07 +0000
Trending Topics
Recently Viewed Topics
© 2015