!! STRUGGLING TO STAY IN THE FIGHT OF OUR LIVES!!!
Husband and Wife Team deliriously happily married for 34 years, struggling against the economic currents and physically wearing down while prices and demands monetarily climb over their ability to keep up. Parents to five grown children three daughters (two are single moms to a combined 4 special needs kids) and two sons who serve(d), one honorably discharged after serving 7 years in the Caisson unit at Ft. Myer for Arlington National Cemetery and the other still serving after four (4) tours to Afghanistan and a tour to Korea. Also the very proud grandparents to nine (9) grandchildren (soon to be 10!).
Amy (59) has no Kidneys (both native kidneys removed in 2006) and is on Home Hemo Dialysis (for 15+ years) 5 days per week 6-8 hours per treatment (caused from genetic and hereditary Polycystic Kidney Disease). Having survived 7 bouts with Sepsis (all requiring weeks in hospital, high powered IV antibiotics and other invasive tests and/or procedures), poor medical management destroyed her bones causing multiple spinal compression fractures and scoliosis due to the bone loss. This has led to chronic and sometimes debilitating pain. Diagnosed with diabetes 18 years ago, she lost over 100 lbs and was able to manage with diet and exercise alone until suddenly back on insulin and yet another specialist. Other medical issues include chronic anemia (15+ years) requiring injections multiple times per week, neuropathy, insomnia, fatigue and more. With more than 20 major surgeries, 50-60 surgical procedures her body is wearing down. Amy was on the transplant list to receive a deceased donor transplant for nearly 10 years but due to high antibodies (from 15 transfusions and her pregnancies) she is a very difficult match and left the list to pursue other transplant centers and attempt to find a living donor.
James (56) Injured at work with L 4-5 Ruptured Disc, 3 failed back surgeries, left me unable to qualiify for employment. Due to medical misadventure, was treated with Actos which left me with Atrial Fibrillation which has often kept me home bound for days. After some years of non diagnosed Psoriasis; I have now developed Psoriatic Arthritis (and fibromyalgia) in most joints including hands knees and feet which can keep me immobile most days of the week and unable to accomplish what is needed from me throughout the day. I am also medication dependent diabetic. Since I am also care-partner for Amy's home hemodialysis I am needed not only for that but also in upkeep of home from cleaning to laundry to walking the furbabies.
Our sole income at the moment is Social Security Disability and for those who are unaware, it is less than adequate or sustainable income. No matter how we budget, it is never enough to make ends meet with the mounting medical bills from the 20% Medicare doesn't cover. Between the combined 16 doctors and visits, lab work, diagnostic and management of illness there are mounting medical bills.
At times needing to extend a hand to church charities and local food banks it is still not enough. It is humiliating to ask. Yet here I am asking, embarrassed of our need but desperate to rise above it. We would rather be doing for someone else in need than having ourselves on the receiving end. We forgo eye checks and new glasses when needed, as well as dental work which is dangerous and a hazard to our health if not corrected soon.
At this point our biggest concern is being able to pay for medications. Even with prescription drug coverage many of my drugs are not covered with one of my meds at over $600 after my prescription coverage and copay and Amy's insulin is over $100/month. We also need to keep our only vehicle properly maintained for all our doctors' appointments and medical needs.
Mounting medical bills and the need to set aside more money for transportation and lodging for transplant evaluation and post transplant stay should Amy be fortunate enough to get a kidney transplant is proving to be very problematic. This combined with daily expenses, car maintenance, water heater needing to be replaced, needing new tires it adds up and quickly. If we can't get ahead of the flood of bills we may drown. I am grasping at hope to stay alive.
Let me clarify here (our way of trying to explain further), we don't eat out *ever*. We haven't had a vacation in over 25 years. We have internet which provides streaming for movies but no TV. Our daughter works for T-mobile so our cellphones are just $20/month. We have one credit card. We don't buy clothes, shoes or other household items and haven't in at least two years. We haven't seen our three daughters and 8 of our 9 grandchildren in over 2 years and other family in 16 years due to inability to travel across country to visit them. Amy has lost two sisters, two brothers and her mother and unable to attend any but one funeral. We count every penny and make every penny count. We've asked family and friends to help, but they can only help so much and so often.
So here we are with our hands outstretched, embarrassed and ashamed and desperate to ask no beg for money. If we can get these past and current medical bills paid off and manage to pay for our prescriptions (applying for pharmaceutical grants) with a little extra padding we may be able to see the light at the end of a tunnel. If you've ever had a friend or family member with a chronic illness/disease you know they struggle to make ends meet. Amy and I are both working on E-commerce businesses to earn a bit. Amy designs apparel, mugs, hats, jewelry but after a year and only $400 in income it isn't reliable or substantial. If you want to have something to show for your donation consider purchasing something from one of her stores (teespring, Sunfrog, Gearbubble, ShineOn - Mystical Unicorn Gifts specializing in the top 15 disease/cancer awareness ribbon colors- also a Facebook Page) and don't forget to share this fundraiser or her page/stores
You know even though Amy is on dialysis she worked at Wal-Mart for nearly 7 years as a cashier then at the fitting room. She is in the process of trying to work from home. The gap between is the issue. So you see we are doing everything possible to cut the fat from our lives in terms of overspending, pay off debt so when the hiccups in life do occur we can manage without scrambling to juggle things like food, electric, fuel etc. Here we are treading water in an endless tunnel of despair and quickly running out of hope. We grasp at hope to live and to endure the present and the future. Can you help? Can you spare $1? $5? $10? $20? More? Do you ever stop to get a coffee? A burger? A taco? A lottery ticket? Could you, would you forego just one and consider sending that money our way just once? If you've ever needed to ask family or friends for money you will understand the shame that it brings with it. If you've ever helped another you also know the joy attached to helping. Can you help us? Will you help? Can you spare some change? Will you spare some change? Can you manage to share our story? Will you share our story? Can you help us find, grasp and hold on to HOPE?
I didn't check the fine print in the bazillion paragraphs regarding fees so if you'd like to send a donation to me directly avoiding all the associated fees, send me an email and I'll give you our mailing address. You can always make an anonymous donation via paypal at paypal.me/kidneybeanscount Namaste and Blessings