* What is your illness(es) or condition(s)? Do you have a good support system, and if so, how have they helped? If not, what would help you?
I have IgA nepropathy, which is an autoimmune disease which attacks the kidneys. I was on dialysis for 27 months and received a kidney transplant in 2013. I have a good support system from a social and emotional standpoint. My friends and family have been very sympathetic with the emotional rollercoaster of dealing with a chronic illness.
However, the support system from a financial standpoint has been lacking. I am the primary breadwinner in my family. There were times that I had to sacrifice from a health and emotional standpoint in order to make sure that I could continue to keep my full-time job with full-time pay and benefits. Without an outside source of financial support, I could not focus 100% on my personal health and wellness so I constantly felt like I had to keep multiple plates spinning with very little tangible assistance.
*What would you like society to know about living with any kind of chronic physical illness when you still have to lead a “normal” life? (Go to work, pay bills, take care of children, etc.) What does it take to be one of the “silent sick?
No one is going to cut you any slack. Just because you have a chronic illness doesn’t mean that the mailman doesn’t deliver your bills in the daily mail. Your employer still requires that you maintain a level of output at your job. Your family still wants you to participate in their activities. Your home still requires a level of maintenance and cleanliness. Without a support system in these areas, every day is a constant battle between competing priorities. It’s the same as everyone else, but with a chronic illness, you are doing these things like a turtle trying to run through peanut butter.
*Do you feel that your illness, and the life you have been forced to live as a result, has made you a better person? If so, in what way? If not, why?
Yes and no. I am a better person because I tolerate less BS. I have to stand up for myself because no one else will. I’ve learned how to address confrontational situations without shrinking and how to advocate in myself in any situation.
I am also NOT a better person because I tolerate less BS. I have realized that life is too short to put up with other people’s garbage. I am quicker to write someone off and less tolerant of the foibles of others.
* What changes would you like to see in regards to the medical field and how they treat people with chronic illnesses? What do you need them to know?
Process makes our lives harder. For example, I have to go through the same process every month to order my immunosuppressant medications. Every month, something tends to go wrong with the process which delays my access to my medications and causes unnecessary anxiety. Plus, it is a monthly reminder that I am “sick”. It would be simpler if I could order my immunosuppressives on a quarterly basis like I could with my other medications.
The medical field needs to understand that they need to work to streamline process wherever possible. Friction points are tolerable when you have rare dealings with the medical field, but when you deal with them day in and day out, the friction points become the stuff of nightmares.
The medical field also needs to embrace technology even more and work together more seamlessly. Too many times, people fall apart during care transitions or when there are multiple doctors involved. Maybe usage of more medical navigators or case managers? But not case managers from an insurance perspective, whose goal is to minimize the use of medical services. Real case managers who can make sure that the patient is being treated holistically and one doctor is not undoing the work of another.
*What would you like to see done in regards to the government and their regulations concerning healthcare? What do you need them to know?
TRUMP NEEDS TO LEAVE HIS HANDS OFF THE ACA!!! While I will concede that there are those who may have been harmed by the ACA in terms of having to pay higher premiums, I submit that those people who had major premium increases had “junk” policies prior to those policies being outlawed.
Instead of gutting ACA, the government needs to implement single payer. Without single payer, healthcare costs will continue to increase and the increases will not actually help the health of the average patient, they will just go to insurance companies and all of the infrastructure health care providers need to deal with the insurance companies. Single payer would remove all of these layers and would let the health care dollars go towards actually treating patients.
Also, government needs to identify drugs that have single-source generics and fast track alternatives. Many immunosuppressives have only one generic source approved which causes costs to be outrageous. We need competition in the generic drug industry to bring costs down.
*What advice would you offer to young people with all kinds of physical illnesses about living their life?
You have to have balance. When you are young, you want to be able to live the same life as others. However, you will also have limitations. Some limitations are in your own mind and some are put there for your long-term health. Your job should be to push limits where they can be pushed while being mindful of your long-term health goals.
*Who is your greatest role model and why?
My greatest role model is my maternal grandmother. She raised 10 children on a farm and ran three successful businesses over the course of her lifetime. Additionally, she experienced almost every possible hardship life could throw at a person, including the untimely loss of a child in his teen years. Through all of the trials and tribulations of life, she was always a positive person who was so happy to see you no matter what was going on in your life or hers. She also passed her love of cooking and needlework to me. She passed in her sleep in December 2016 at the age of 90 and I miss her every day.
*What is your greatest regret in life and why?
That I didn’t challenge myself more when I was in high school and college. I took the easy way through most of my classes and didn’t set myself up to do more. While I excelled at everything I did, I could have expanded myself more by taking on challenges that I wasn’t sure I could win. I’m not sure where I would be now if I had done so.
*What are you most thankful for and why?
My deceased kidney donor. Without my donor, I don’t know if I would be here right now writing this to you.
*Why did you decide to be part of this?
I believe I have a unique perspective. I was only 40 years old when I went into kidney failure and had to start on dialysis. I was a working professional and remained so during the entire time I was on dialysis and continue to do so now. I am willing to tell my story without sugarcoating – people need to be willing to allow themselves not to have to be “Pollyanna” all the time and I want to promote that.