So, we’re very close to the end of the campaign.  Only five days left, and as of writing this blog, we had a little more than $4,000 left to reach goal.  That means in order to make goal we need to receive $855 per day.  We are making a lot of progress in a strong push at the end, but chances are we are not quite going to make it.  Lucy and I had very much hoped to make goal, but we chose to make the campaign with flexible funding so even if we didn’t, I would still receive the money you have contributed to help with my medical expenses. The main difference between falling short and making goal is the percentage Indiegogo keeps.
For comparison:
$15,000 with 9% taken by Indiegogo = $1350 in fees
$18,000 with only 4% taken = $720 in fees.

I guess I should have set the goal to $15,000, but it was too late the moment we hit “Go”.  The contributions made via PayPal have been sent to us immediately, and have been helping to pay for my medication, tests, and treatments thus far.  The contributions made by bank transfer are holding, and will be sent less the Indiegogo fees a few days after the campaign ends.

So, what if we don’t make goal?

I still need treatment, and even if we had made goal, it wouldn’t have been enough to pay for the antibiotics by itself since the time frame is potentially so long.  If I’m lucky, it will be the shorter time frame, but I need to make sure enough money is there in case I’m on the antibiotics for a year or more.  Once I start, I can’t stop.  It’s also taking longer than I had hoped to get my symptoms enough under control for the antibiotics to be as safe as possible.  My doctor added more therapies last time I saw her, and she may add more when I see her again.  Also, if the MRI shows that I do have lesions on my brain, I have no idea how that will complicate treatment or add to the expense.

At this point, I think a realistic estimate of total expenses is going to be somewhere in the $40,000-$60,000 range.  Hopefully, when I am able to enroll in Medicare in January of 2014, that will cover some of the expenses and bring the total down.  For 2013, it does not look like I will be able to get insurance.  This is now a pre-existing condition, so regular insurance rates are exorbitant, if they will take me at all (which is very unlikely with the disease I have).  For 2013 the state of Nevada does not have a state run PCIP (Pre-existing Condition Insurance Plan) system, and instead chose to participate in the Federal program.  Congress chose not to fund that program, so it stopped enrollment for the year back in mid March.  Unfortunately, I did not find out about that program until five days after enrollment stopped.

For now, I am going to continue with the symptom management and immune boosting therapies my doctor has prescribed, which for now are running about $1000 per month.  I am also pursuing disability benefits and services, but the application processes can be lengthy, so I’m not expecting anything immediate.  I also have found one medical treatment grant where I may (fingers crossed) be able to get a few thousand more for the antibiotic treatment.  That means I’m probably stuck cooling my heels until 2014 when the new health care laws kick in fully and I can enroll in Medicare based solely on my lack of income.

So, the contributions are bridging the gap, and allowing me to receive preliminary treatment while I work on securing income and medical benefits, and for that I will be grateful for the rest of my life.

Beyond that, the outpouring of support and encouragement has been a boon emotionally and mentally.  Living with a debilitating illness is something that consumes your life.  I used to have a very strong sense of self.  I was active and busy, always exploring and learning new things, and I always had more projects going than any one person should.  As I have became more and more ill, it ate away at the things I like to do, restricting them, reducing them, and I had to stop doing things, one at a time.  It’s insidious, because I adjusted my life, and adjusted my life, and worked around the difficulties, and more difficulties, and more difficulties, until I woke up one day and realized there was almost nothing left.  My life is no longer mine.  It isn’t filled with the things that make me want to live, with the things that make me happy and fulfilled.  It’s just filled with illness, from how I wake up in the morning to the constant pain and lack of coordination to how many minutes I can spend on my feet to whether or not I can even think coherently.  As my life has been redefined by the illness, it has become more and more difficult to separate my sense of self from the illness.  Most days I feel like I AM the illness, and not really me at all.  The outpouring of support and encouragement, especially from the corset making community, has helped me to remember myself, to know that I have contributed to the world, that I do mean something beyond Lyme Disease.

Thank you to everyone who has contributed and shared the campaign, from the bottom of my heart. Even if we don’t make goal, as far as I’m concerned the campaign is a success. :)