A Huge Plea For Help So That I Can Afford Life-Saving Meds

A Huge Plea For Help So That I Can Afford Life-Saving Meds

I’m really not good when it comes to asking for help, and repeating that plea. But, here I am, putting out my hand like Amanda Palmer says we should. It is a hand that is going to go out often because, to be very frank, I don’t want to die. If I don’t find web design and development work, and soon, I have a 95% chance of throwing a clot and having a stroke; 80% chance that I’m going to die. I’m not sure I can properly stress how dire things are at the moment. It’s truly life or death right now.

First the details of my plea before I get to the personal details.

The Plea:

I need to find WordPress web design and development* work. I also work at a very reasonable hourly rate to update content for WordPress sites, troubleshoot issues, and more. Basically, I’m your WordPress guru. In an ideal world, I need one web design job a month to pay for life-saving meds. Otherwise, I need 50 hours of hourly work per month to pay for the meds which I’ll explain in more detail below.

To discuss all that I can for you—a free consultation—please e-mail me via my design company address.

Personal Details:

I have lupus, which is flaring. I also have a blood disorder called antiphospholipid syndrome. One of the many secondary disorders I have is vasculitis, which is also currently in a flare. My vasculitis is starting to affect my extremities and not just my central nervous system. I’ve been on warfarin for a number of years to prevent me from hyper-coagulating and having another stroke. Despite being an a very large dose, the warfarin is no longer working and my clotting time is below that of a normal person. And my veins are now shredded, thanks to weekly blood work to monitor my INR levels.

My specialist and GP want to place me on a new type of drug, off-label: a novel oral anticoagulant. The problem is, it’s very very expensive. My current medication costs are $1, 500.00 per month. I truly cannot afford this new medication. My doctors tried to get special authorization for the government to cover it. They denied coverage because I currently do not have a clot and my doctors want to use it for off-label use. They don’t care about my huge risk factor for developing a clot at any moment and death. My doctors also tried getting it covered through the drug company’s compassionate care program. They, too, declined it because I currently do not have a clot.

I was asked why not do another crowd funding campaign for my meds. The problem with that is doing so would only be a temporary stop measure. I will be on these meds for the rest of my life, so getting work so that I literally live—not just survive—is of the utmost importance.

I’ve been in the ER eight times this year because of how bad things have gotten, and have to see a doctor weekly. I really want this current reality to end.

Please pass on this information and pass it on frequently. It’s a very tough and stressful time for my entire family. We truly need all the help we can get.

*Please don’t judge this website as a test of my work. I’m currently redesigning all of my personal websites. Because this website gets updated so infrequently, it’s on the bottom of my list. I have a large portfolio to show you when you contact me for work.

5 Responses to A Huge Plea For Help So That I Can Afford Life-Saving Meds

    • Thanks, Zahida. If you are insistent on sending something, then you can PayPal to sales at skookummonkey dot com.

      Thanks again for your support.

    • I will contact you in a couple of hours.

      If you do not hear from by say 4 pm PDT, please check your junk folder.

      Thanks 🙂

      Cheers,

      Jules

  1. […] I think trauma therapy would be easier if I wasn’t also fighting one of my worst lupus years. In 2015, I had 11 or 12 (I lost count) trips to the ER for various things, like my heart and lungs becoming inflamed, multiple kidney infections, IV antibiotics, loss of eye sight, meningitis, and more. The dose of my weekly chemo was increased. I was on prednisone. And I had to start a new, really expensive and scary medication called Xarelto because Warfarin just stopped working. This, plus the addition of a few other meds has brought my monthly prescription costs up to $1,500 per month. […]

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