The cost of chronic illness: Its the MonSter!

This year has had some beautiful moments. For the first time I see my worth and my value, and I am learning to ask for help. My name is Meghan and I am a disabled single mom of three and a kindergarten teacher at a title 1 school in Florida. I was diagnosed with MS two years ago after being misdiagnosed with RA over a decade ago. I am doing my best to be there for my children and my students every day. The stress of chronic illness is the undercurrent of my life. My three children are 15,13 and 10, two boys with my girl in the morning. She will be the first to tell you she’s my favorite, that’s debatable! My eldest was diagnosed with PoTS this year and we have incurred many medical bills from specialist for him. My children are active and talented, and I will not allow MS to steal their opportunities to be a child and explore their talents, whether it is academically, creatively or athletically.


The cost of chronic illness in America is overwhelming, it will take over every financial decision you make and humble you deeply. I am grateful for insurance; I am grateful that my aging parents allow me to stay with them. I am not grateful for the cost of copays on meds, herbs and supplements, gym memberships, trainers, special pillows, bedding, food, ability aides, making the home accessible, gas, assistant devices, and the copays, oh the copays!


This last year we realized that my MS was not responding to disease modifying drugs, with this I have embarked on the Lemtrada journey. Lemtrada is a type of chemo that will hopefully, fingers crossed, destroy the cells with MS and new ones without MS will replace them and then my disease will not progress further. I am a kindergarten teacher with a compromised immune system. I have had shingles, (special meds and such needed for this), hospitalized twice for the flu 3-5 days for these lovely stays and bills going over $10,000, My meds cost over $500 a month(with insurance), I have had to have steroids 3 times not counting with the chemo. I have had thrush for over 4 months of the last year with several rounds of meds. My second round of Lemtrada has been postponed because I have not had the money to pay the copays to all the specialist I needed to see before I can even schedule my next treatment.

I have applied for grants but since I now make $800 too much a year for Medicaid my insurance cost has  gone up to $550 a month and I am now disqualified for many grants. Within all of this my attorney who had become a dear friend over the last six and a half years passed away. Child support was never consistent, but now it is non-existent and has been for this last year. I am going to need around $5000 to bring him back to court and protect and support my children.


I am asking for help! I need help! I am awful at asking for help, so now I am at a crisis point and am asking you to help out my family so that we can keep battling these diseases that are trying to take over our lives. I do not want my children to suffer because I chose a profession that does not make a lot of money, but does a lot of good. So I am humbling myself to ask you to pass this to your friends, and donate what you can. I thank you and so does my family. We will continue to create a life that makes a difference.


Meghan Jontina Poole-Van Swol
Safety Harbor, FL

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