Nahleen and Cleo's Medical Fund
Organized by: Corey Blake
11/20/14 UPDATE: Wow! We not only hit our goal - we passed it. Because of you! Thank you!
You can still give. Anything over our goal will go toward not just maintaining but improving Nahleen's care, particularly things not well-covered by insurance, such as:
-Mental health: Depression is very common with chronic diseases and is a specific symptom of MS. Nahleen has benefited from therapy in the past but insurance would only cover a limited amount. We can now commit money to her getting this important help again.
-Diet: Working with a nutritionist is something we've wanted for her for a long time. It's been proven that diet can affect inflammation in the body, particularly with MS and lupus. The trick is that Nahleen has a number of food allergies as well as IBS (irritable bowel syndrome), so she can't necessarily eat what people think would help her. Working with a nutritionist will allow her to navigate her allergies and find a diet that works for her.
-Holistic: Nahleen has responded very well to acupressure and acupuncture but again insurance coverage is limited and sometimes non-existent. We want to return this to her treatment, and also explore ways outside of traditional western medicine that are safe and effective in improving her day-to-day life.
11/1/14 Original post:
Nahleen was diagnosed with multiple sclerosis (MS) in December 2002, and then with lupus in August 2010. At that point, due to her worsening condition, she could no longer work at her full-time job at two LA TV stations.
When she can, she now writes about her journey at Nahleen.com. She also keeps her friends and family updated on her Facebook page. Every day she walks, even a little, to keep from losing the use of her legs. She is an inspiration and an example of never losing hope or laughter to the struggle of ongoing diseases. But that doesn't mean it's easy. Most of her time is spent taking care of herself, and navigating the challenges of self-care in a labyrinthine medical system. It is truly a full-time job. One with no time-off because MS and lupus are always on. They are auto-immune diseases with no known cures.
Cleo was a stray kitty who claimed her home with Nahleen and Corey. In many ways, her health problems have mirrored Nahleen. So much so, that it's been suggested more than once that Cleo is Nahleen's spirit animal. After a number of false diagnoses, it was finally discovered Cleo has an overactive thyroid and irritable bowel disease (IBD). She lost nearly half her body weight in a short time but more recently her health has been stabilizing.
Nahleen and Cleo share a beautiful bond with each other. They support and console each other through the ups and downs of their medical journeys. But they are very expensive journeys.
Our income, which decreased by over $1,000/month when Nahleen went on disability benefits, has struggled to keep up with increasing medical costs. Last winter and much of 2014 have been particularly trying, physically, emotionally and financially, as we try to keep up with prescriptions, unexpected hospital visits, tests and other medical procedures. To try to make up for the loss, Corey has supplemented his full-time job with two freelance jobs plus some odd jobs here and there. But after 12 years of pulling ourselves through, it just isn't enough. At this point, we're struggling to keep our savings at about $23.
Throughout this, friends and family have asked how else they can help. Normally, pride said we should politely decline such kindness. But we can't tough it out on our own anymore. We really do need help.
So, we're asking for help.
Our hope is that by asking many people, family and friends and maybe others, the burden can be dispersed across our community to a more manageable level.
What are we asking for?
If just Nahleen's medical expenses were eliminated from our budget, we'd do a little better than break even after other bills, living expenses, debt, and Cleo's expenses. So the hope with this is to try to raise money for Nahleen's medical fund for 2015.
Any donations from you will only go to Nahleen's medical fund. If you wish to donate to Cleo's medical fund, let us know in the comment of your donation or send an email, and we will be happy to honor that.
What does your donation mean?
You can donate any amount. CrowdRise's default minimum is $10 but they accommodated our request to lower the minimum to $1. We know that every little bit helps. If you're not sure how much to give, here are some examples of donation amounts and what they will do:
$10 = One month of Nahleen's lupus medication
$35 = One appointment with her primary doctor, rheumatologist (for lupus), gastroenterologist or dermatologist
$50 = Lab work
$65 = One appointment with her neurologist/MS specialist or ophthalmologist
$130 = One MRI
$200 = A year of appointments with her primary doctor or neurologist/MS specialist
$400 = An average month of medications
$466 = An average month of doctor visits and tests
How did we come up with our goal?
The trick is that Nahleen's two diseases, and the complications they create, are very unpredictable. She had a scary exacerbation in the beginning of 2014. By the end of spring, things were actually calming down some. Then the summer got increasingly worse for her. By the end of October, an infection she had been fighting for two months caused her MS and lupus to flare up, ultimately landing her in the ER. At the time of this writing, she is home still waiting for insurance to approve medication that helped her get through the earlier exacerbation in January and February.
What we're hoping to do is prepare for 2015.
What we've done is average out Nahleen's monthly co-pays and other expenses for doctor visits, prescriptions, tests, lab work, and procedures from July to October of 2014 and then project that out for 12 months based on that history and what her doctors are recommending. Please note these costs are after what is currently covered by two health insurance plans as well as financial assistance programs. Assuming next year doesn't get worse than the last four months and what insurance covers stays relatively the same, this should help us signficantly. Fingers crossed. We then added a little extra to cover CrowdRise's standard fees (5% per donation and credit card fees of 2.9% + $0.30 per donation). Please know that these fees are standard among crowd-funding sites. So our total goal is $11,500.
If we can reach this goal by the end of 2014, it will allow Corey's income and Nahleen's Social Security benefits to go to normal living expenses like rent, food, electricity, and Cleo's care, as well as car payments and educational loans. With luck, we'll be able to use the year to get a little ahead of things again. Maybe we won't feel we're living right on the cusp. Maybe we'll even be able to build our savings back up some.
We thank you for whatever you can give. If you can't give (we know we're not the only ones trying to make ends meet), please share. Even spreading the word and increasing awareness is a big deal to us. Sharing our story and others like them demonstrates how living with diseases isn't easy for anyone, both financially and physically. Thank you.
-Corey, Nahleen and Cleo