Having a chronic illness certainly changes your perspective on who you call a friend and who is merely an associate or an observer of your life. With my story being in the paper and on various social media outlets I have attracted a lot of observers and associates but still have very few people I can truly depend on. With all that being said I made the trip to Michigan only to find out that U of M would not see me for an evaluation because I do not have a secondary insurance payer besides Florida Medicaid which is obviously not valid outside of Florida. The social worker was very helpful though I must say. She spent over an hour on the phone with me while we conference called some Florida insurers to see if I could get onto a plan so they could schedule and evaluation before my departure. Unfortunately we ran into a brick wall. The companies we were in touch with all had plenty of plans to offer but once they got to their health questions I was deemed ineligible for coverage due to my end-stage renal disease and prior diagnosis of needing a transplant. What we found was that most of the plans have exclusions for those of us with ESRD and if you've been told by a physician that you require surgery within 24 months you do not qualify to purchase a secondary policy. Needless to say I felt devastated. Even with the money I've raised that amount will only cover the share of cost from Medicaid for 6 months (@ $1314 per month) and the "donut hole" in my Humana prescription coverage of $4700, it will not cover the 20% remaining of Medicare which is why no other state will list me without a private secondary insurer such as Blue Cross. So either I have to raise even more money which is not a bad idea considering these medical costs continue to add up daily even now, or I have to move out of Florida and try to get on a secondary insurance plan in another state. I don't want to be forced to leave what I now consider to be my home state simply because I have a health condition for which I can be treated right where I am at now if someone would just get on the ball and get my case to the medical board for wait listing. All of my information is now with my coordinator in Tampa and I should be coming up for consideration but with the recent closure of a neighboring transplant facility Tampa has now gotten backed up due to the additional patients they are now taking on from Gulf Coast.
There is no way to fully convey my feelings about how this is going. I feel very alone and very frustrated. I see colleagues who have been younger and affected by this disease for much less time than I pass away, I am scared to sleep some nights for fear I will not wake up and no one will be there to find me for weeks or possibly even months considering how often I talk to my family and having very few friends nearby. At 36 most people are planning their weddings or their children's future and I'm planning my funeral. Sometimes it is all just so overwhelming that I go into a full blown panic attack. With all the medical bills on my credit report I don't know if I'll ever be able to do the things most take for granted like finance a car or buy a home but I try my best not to focus on those things and just enjoy the time that I have left here on earth. I pray every day for some good news to come my way because having all these doors slammed in my face is taking a big toll on my otherwise positive outlook. I've gotten so good at hiding my depression now that even my doctors think I'm fine but to be honest putting on makeup to hide my tired, puffy, eyes and flashing a big bright smile to keep from crying is exhausting. I can only compare it to how it must feel to live two separate lives. Not every day is like this but they are increasing in frequency with the worse my labs get and the more lethargic I feel.
Despite all of my personal battles I was very happy to be a part of the Night for Life IX event at the Broadway Palm Dinner Theater in Fort Myers last month. As the secretary of the Organ Transplant Recipients of SWFL group I volunteered to take charge of the silent auction portion of the event. Myself and several other members of the group spent all day on April 11th prepping and setting up for the event and by the time doors opened I was still in street clothes with no makeup on! After a quick change in the bathroom I was able to go out and greet our amazingly generous guests and answer some of their questions about both kidney disease and organ donation in general. We considered the event to be a GREAT success and the turnout was even bigger than it had been in previous years! The event was also covered by Melanie Payne from the News Press who has been following and sharing my story in her articles for the past four months with the hopes of finding me a living donor. If you're interested in reading the full article you can click here.
The one thing I find that I have to continuously explain to people is that fundraising is extremely difficult. It's not just the planning and execution of fundraising events but it's also the sharing of all of the personal aspects of your life and opening yourself up to the criticism of others. Not everyone is supportive of people who have to ask for help in situations like this and it's mainly because they just don't understand it so they judge based on the appearance of things. Not all of us who have terminal or chronic illnesses look the part of someone who is "sick" or "in need" and as awful as it sounds for me to say, that is a drawback. Those whose illnesses are presented physically and cannot be hidden obviously take precedence over those of us who appear healthy and thriving. Often times we are dismissed as fakes or that we should just go make the money ourselves when no one can really see what is going on inside our bodies that prevent us from doing so. I learned early on not to judge a book by it's cover because as a society we have gotten very good at hiding things from one another. Not everyone wants to be treated like a "sick person" or pitied for their circumstances. I am one of those people which is why I try so hard to live as normal a life as possible so that I am not treated differently where it matters most. Those of us who fundraise do it out of necessity, not out of greed or laziness. I can say with great certainty that we've all had or moments in which we'd wished we were someone else or that we could live someone else's life. We've all had thoughts of how we would have handled a situation or experience differently than someone else we know. But truly many more of us with terminal and chronic illnesses daydream of those things often. Of how we'd just like to have a "normal" life and complain about the things that people without our problems complain about. Personally I would love to complain about how often I have to go pee, the person who needs new lungs would love to be able to complain about being out of breath from working out rather than from simply sitting still, the person waiting on an intestinal transplant would surely love to complain about their food not being prepared to their taste rather than not being able to taste food at all. We fundraise because we just want the chance to enjoy all of the things that so many people take for granted every single day. So the next time you take a deep, cleansing, breath; thank God for that ability and appreciate it for all that it's worth. When you go in to use the restroom thank God for the ability to eliminate those wastes from your body. When you see a beautiful flower, or the face of a loved one thank God for your gift of sight for there are others who have only known darkness and are waiting to see the light.
Thank you all for continuing to follow my story and I pray that my next update will be more upbeat and have something much more positive to report.
Love & Blessings,
Melissa
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