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I’ve had chronic back pain since I was in my teens. In 2009, I realized I was being slowly crippled by said pain – which was getting noticeably worse, but couldn’t afford to go to the doctor. Then I lost a tooth and ended up on MSI (medical services for the indigent – the precursor to the Affordable Care Act in California), and so I started seeing doctors. Turns out I have degenerative disk disease as well as hypertension, depression, spinal stenosis and arthritis. None of these conditions on their own qualified me for Disability, however. I was working as an artist online and doing part-time caregiving for my wife’s grandparents for pay.
This was more than enough income to cover our bills, when added to my wife’s income through her mother’s company. Then, in 2013, my wife was admitted to the hospital with stroke-like symptoms. Turned out she has Cushings Disease, which is a tumor on her pituitary gland. This causes her to be unable to regulate the amount of the stress hormone, cortisol, in her blood stream. The stress of her job was literally killing her. By the time she got out of the hospital a week later, she’d been put on massive amounts of blood pressure medication, and had suffered three strokes and nine transient ischemic attacks (TIA)’s, also known as mini-strokes. She was ordered by the doctors to stop working.
Her blood pressure medication caused her to start suffering the symptoms of Type 2 diabetes. Over the next two years, the doctors tried every option they could to control her blood pressure and stop her from having TIAs, while regulating or getting rid of the diabetic symptoms, to no avail. Meanwhile, I was fighting to get Disability through SSI (even to the point of getting a lawyer and going through a hearing, and 4 rejections), because with the loss of her income I was struggling to cover the $1400 a month our bills added up to, and especially with her needing me at all times to take care of HER due to the brain damage she’s suffered in the strokes, on top of my inability to work in an office environment due to my back and leg problems.
At the end of these two years, she was taken off the synthetic blood pressure medication (which removed the type 2 diabetes symptoms), and put on medical cannabis. It took another year to find the exact right dosage – but unlike when she was on the BP meds, she didn’t have any further TIAs or strokes (her current count is 18 TIAs and 3 full strokes) when on the cannabis, and her blood pressure and mood were controlled. The cannabis also helped regulate the emotional issues such as anxiety and social issues she was having due to the brain damage.
The down side being that cannabis is NOT covered by any insurance, least of all the ACA insurance that we both have right now. Her meds cost me $100 a week ($103 with ATM withdrawl fees) just to make sure she has them. And due to this lack of money, several times in the last year she’s been forced to skip a day or two of medication and each time this has resulted in another TIA.
At the end of 2015, we lost my caregiving income for her grandparents because they moved into a facility. Her grandfather has since passed away, and her grandmother is still living in the facility in Laguna Beach. That was really the moment that I stopped being able to cover us.
We rode on our savings and on me picking up a delivery job with DoorDash that nearly physically killed me due to my disabilities, but it was the only job I could find that let me keep my now disabled wife WITH me at all times (she needs me with her constantly for comfort and safety – her brain damage is severe at this point and she can barely function and hold conversations with anyone else – even her own family – as she’s crippled by social anxiety and other issues). This delivery job also lead to us running our car into the ground and putting 5000 miles on it in less than six months. I was forced to quit the job in May of 2016.
We’ve been living off nothing but my income as a digital artist/graphic designer, and that which people donate to us out of the goodness of their hearts via GoFundMe and Paypal for the last nearly a year.
I had managed to keep the car payment paid. I’ve looked into filing for bankruptcy, but I can’t afford the process so that’s been put on hold. Primary is to make sure my wife has her medication every week, and that is pretty much all I bring in these days.
We’re living in her mother’s house in a spare room, not paying rent or anything. We would be homeless if not for her. But she can’t afford to help us because without my wife able to work, there’s nothing she can offer us. My parents have tossed us a couple of hundred dollars here and there, but they’re retired, on a fixed income and in their 70s. And they live in Texas, so they can’t really afford to help either.
And that’s how we came to be where we are now.
Frequently Asked Questions:
1. Why can’t you just go get a job?
This is a two fold reason – one, I am disabled by chronic pain (spinal stenosis, degenerative disk disease, and advanced arthritis, as well as Lymphedema and related Lymphorrhea in my left leg) (though apparently not in pain enough for the government to help, due to my age), and all my energy is devoted to caring for my multiple stroke-victim wife. Even if I magically got hired (and I have applied everywhere from fast food to grocery stores to offices to…anything that’s hiring), I couldn’t afford to be away from her 8 hours every day. If something happened, she wouldn’t think to tell anyone and I might come home to her hurt or worse.
UPDATE (12/31/2016): A friend is trying to help me get a graphic design job at her company. Hopefully it will pan out.
UPDATE (1/7/2017): I haven’t heard anything about the Graphic Design job yet. I’m still hopeful. In the mean time,
I have an opportunity – a friend of my mother-in-law is having back surgery on the 17th, and needs a temporary caregiver for about 6 weeks of recovery time. This work runs about $20 an hour. If I work full time for the six weeks, I will make enough money to ensure my wife having meds and to be able to pay the car payment, get new car insurance, and pay off the traffic ticket I owe from when I ran a red light on the way to the emergency dentist. However, I don’t know how much help this woman will need or how many hours I’ll be putting in every day, so a lot will depend on that.
And, of course, if I take this gig (I have experience from caregiving for Grandma and Grandpa year before last), I won’t be able to work on art likely during the six week period so all commissions will go on hold and I won’t be accepting commissions beyond a wait list period for that time. This all also depends on the woman agreeing to hire me and liking me enough to keep me for the full six weeks (and whether or not her partner will be coming out from Albuquerque to help her during that time as well). So this is still an up-in-the-air thing. I’m hopeful, though.
UPDATE (1/18/2017): The potential job fell through – she has two people to help her already and doesn’t require my assistance. Back to the drawing board.
2. Didn’t you have a job as a delivery driver?
Yes, I did. I worked that job for over six months – and it destroyed our car, on top of costing more money in gas and car repairs than we made. Yes, my wife was with me for all my shifts when I was doing that, but as the company didn’t cover gas or car repairs, we basically ended up screwed because I took that job.
3. Don’t you take artwork commissions?
Yes, I do. But my commission queue is on hold at the moment due to a leg injury that makes me unable to sit at my computer for longer than an hour at a time, which is making the one active commission I have right now take a lot longer than it should. I will still take commissions – I want to work for the money I bring in – but things are a bit slower than usual at the moment. Commission information can be found here.
(UPDATE 10/28/16): Queue is no longer on hold as my leg is mostly healed. However, I’m having trouble finding the time to devote to commissions as my wife has needed my attention a lot lately. I am accepting commissions, but they might not be finished as quickly as I would like.
(UPDATE 12/31/16): Still open for commissions and offering a sale for the next 3 days (ends 1/2/2017). Single character + simple background, flat color, for only $20. This is a third of the normal price! See my Tygerwolfe Designs Facebook Page for more information.
UPDATE (1/7/2017): The sale is over and was mildly successful (3 takers). Commissions are still open. And remember, all Patrons get a 10% discount on commissions – even if you’re just a $1 a month supporter!
UPDATE (1/18/2017): Commissions as normal are still open, with 2 more spots in my queue of 10 available.
UPDATE (2/27/2017): Commissions are still open – with 5/10 spots available!
4. What is the fastest way to get funds to you?
PayPal is preferred for immediacy. Square Cash is second, but takes a 1% fee per transaction. GoFundMe takes 3 days to get the money into our account, and they take a 20% cut off the top of any donation. On my commission page, there is more information and other ways to donate. You can always use Paypal. My direct PayPal link is here. Alternately, Patreon is a once a month subscription that will also get you access to my Patron feed which includes behind-the-scenes information on the novel I’m editing, wallpapers, a 10% discount on all artwork commissions, and all sorts of other perks. Joining at $5 a month or above will get you a mention in the dedication of the book I’m currently editing. If you join at the $10 a month level or above, you get entered in my bi-monthly drawing for a free commission (a $55 value!).
5. What exactly is wrong with your wife?
My wife has Cushings Disease, which is a tumor of the pituitary gland. This has made her body unable to regulate metabolism or, more life-threateningly, control cortisol levels. Cortisol is known as the stress hormone and regulates how you respond to anything stressful.
The result of it being uncontrolled is that her body and emotions respond to all stress with the same, incredibly high stress response. Whether it’s not being able to find a shoe or being attacked by a tiger.
This has caused unmedicatable high blood pressure (unmedicatable because the cortisol levels just cause it to keep rising even when it’s medicated down). The final result of this is that her blood pressure goes up higher than 200/150, and she ends up having strokes.
This was diagnosed at the second stroke when she was 30, in 2013. I stayed in the hospital with her for a week while they tried to figure out what was going on and she had a total of two more strokes and eight TIAs (transient ischemic attacks, also known as mini-strokes), and one of the strokes came very close to killing her.
They ended up putting her on medical cannabis as it was literally the only thing that might shrink the tumor AND serves the purpose of calming the stress response in the brain.
No insurance covers the medication, which she takes orally 4x a day. It comes to $98 a week, plus ATM withdrawal fees, so I round it to $100 a week.
In the last three years, all during periods where we couldn’t afford her medication, she’s had more TIAs and one other stroke. The most recent TIA was on 09/24/2016. Each TIA brings her closer to a stroke that will kill her. The doctors can’t do surgery to remove the tumor because of a risk of brain damage due to the size of the tumor and the pituitary location. She is now up to 18 TIAs and four full strokes in the last three years.
UPDATE (12/09/2016): The cost of her medication has gone up from $14 a day to $20 a day – before ATM fees…I don’t know how long we’re going to be able to keep this up…
Keep in mind the fees are per withdrawal so if I don’t have the full amount for a week or month at the same time, it ends up being even more expensive because there’s a $5 fee on EACH individual withdrawal.
Her meds now cost, on the LOW end, more than our car payment. I just made myself sick typing this out…God help us, what are we going to do?
UPDATE (12/14/2016): I managed to get in touch with the manufacturers of my wife’s medication. They agreed to drop the price back to $14 a day after some impassioned pleading and explanation of our situation. So I don’t have to worry about the cost of a week of her meds being over $500 anymore, it’s back down to where it was. Thank god.
6. Why does the cat have payments?
James was bought through a store credit account at a pet store. Thanks to the interest, he isn’t paid off yet. We still owe around $300 on him. And if we miss two or more payments, he will be repossessed (terms of a contract – I don’t care how much you want something, always read the damned contract terms when you sign something). His payments are currently up-to-date, despite the latest one making us overdrawn.
UPDATE (10/28/16): That overdraft has been fixed.
UPDATE (12/09/2016): James will be completely paid off in another three or four months, depending on finance charges and potential late fees. We only owe another $160.77 on him. So two payments of $63 and one of the remaining balance of $36 or so, and he’ll be paid off!
UPDATE (12/14/2016): I didn’t have the money for the payment this month. It’s now overdue, and has a $20 late fee attached. I need to get $80 to them as soon as possible to get that paid off or else it will increase exponentially over the next few weeks…
UPDATE (12/31/2016): The cat payment for December was finally covered and is up to date. Another two months and he’s paid off and this bill will go away.
UPDATE (1/18/2017): This month’s payment has been made. Next month, the cat will be paid off!
UPDATE (1/8/2017): The cat is paid off! This bill is GONE!!
7. Why is the car payment so expensive?
We desperately needed a car. We bought through CarMax at a time when we had steady income. We paid without failing on the car for two years before this happened. Santander, the company the loan is through, was literally the only company that would approve us as at the time we had next to no credit history. The payments are $470 a month, plus a $30 processing fee. So $500 a month. We missed a deadline to refinance, and now that we are behind two months payments, so that isn’t an option anymore.
UPDATE (10/28/16): We are currently up to date with car payments thanks to them making a deal with us and accepting a $250 payment for the month of October, and extending the loan an extra two months (so that the months we missed haven’t “come up yet” in the rotation), and therefore we are not considered overdue any longer. As of this update, the car is not in risk of being repossessed! Yay!
UPDATE (11/19/16): As of today, we are behind on the car payment again. I have no prospects to bring in the $500 I need any time soon, either, so desperation is starting to set in. On top of that, the car is making a noise when braking, and we have no insurance currently (thanks to not being able to afford the $150 a month payments).
UPDATE (12/09/2016): We still haven’t been able to make last month’s payment and are going into this month a full month behind. The total due on the 19th of this month (10 days from this update) will be $1000.
UPDATE (12/14/2016): Still haven’t been able to make last month’s payment, and have no prospects toward this month’s payment. There is a very good chance they’ll reach the 19th this month and decide that we should be repossessed. I won’t know until it happens. I have five days to produce a miracle.
UPDATE (12/31/2016): This month’s payment was never made. If I can’t at least get one of the back months paid by 1/19/2017, the car will be repossessed. On top of that, when I was rushing to the dentist for an emergency extraction on the 23rd (cracked my right upper front bicuspid down to the pulp and gum), I ran a red light and now have a as-of-yet-amount-undisclosed ticket on it’s way to me. The front brakes are squealing, and we still have no insurance. If we can’t get insurance by 2/2/2017, the car registration (which is also due that month and is $180) will be suspended. This is all a moot point if I can’t get at least one month paid on the car by 1/19/2017, because if it hits that third month overdue, the car will be repossessed and everything else becomes a moot point.
UPDATE (1/7/2017): The car is still behind. If I don’t pay at least $500 by 1/19/2017, the car will be up for repossession. On top of that, I have to get us new insurance, pay our $180 registration fee, AND pay a $490 traffic ticket for running a red light when I was on the way to an emergency dental appointment on 12/23/2016 when one of my teeth broke and had to be extracted…February is not looking to be a good month unless a miracle happens, and happens fast.
UPDATE (1/18/2017): While this month’s car payment was not covered in full, I did pay $200 toward the $1000 back payment we owe. They say as long as I can put at least that toward it every few weeks, it won’t go into repossession. But I very rarely have that amount all at once, let alone the actual full payment, so…we’ll see how it goes. I did get the oil changed, however, and the nail in the tire was fixed for free (the tire was under warrenty). HOWEVER: the day after I got the tire fixed and the oil changed, the motor and actuator on the driver’s side window failed. This caused the window to drop into the door. Thankfully the window did NOT shatter and the glass is safe inside the door frame. The bad news is that the window can’t close. We have made a temporary window out of clear packing tape and I am calling around, getting quotes to fix the window. The part needed is around $80 by itself. So far for parts and labor the cheapest I’ve found is around $280. Obviously I don’t have that. So for the time being, my car has no driver’s window.
UPDATE (2/8/2017): The car payment is still overdue – very much so. We need at least $500 by the 19th to make sure it doesn’t go into repossession. The driver’s side window is still made from clear packing tape, as I haven’t been able to afford to get it fixed. However, a large donation helped us pay our registration and get insurance again. The insurance is $58 a month. And we still need to get the car smogged before the 20th in order to ensure we don’t have to pay MORE for the registration. That’s going to be around $50 or so. And like I mentioned, we don’t have it.
UPDATE (2/19/2017): The car was repossessed this morning…I don’t know what we’re going to do.
UPDATE (2/21/2017): We talked to the loan people and the car was released to us on hardship release. If we can get together $500 by March 1st, we’ll be able to reset the repossession clock and be considered up to date! Our insurance is also due on March 3rd, and that’s $56, but I’m not worrying about that right now.
UPDATE (2/27/2017): We have 2 more days – today, tomorrow, and until 5pm Central Time on March 1st, to come up with another $128. We already have together $372/500, we just need another $128 in the next 48 hours to fix this! Please, if you can help, now is the time!
UPDATE (3/1/2017): We made it! Literally in the last few hours, we got what we needed and the car was secured! Now on to refinancing and trying to get the monthly payments lowered. A huge thanks to my mother-in-law and to my Patron, Skywing, who provided a lot of the help!
(UPDATE 3/24/2017): Thanks to my mother-in-law, we now have the car payment covered in the future. Patreon is paying our car insurance every month. So as of right now, the biggest problem we have is that both window motors have burned out and need to be replaced. This is about a $700-$1000 repair, so right now both windows are made out of clear packing tape.
8. What about work-from-home options?
I’ve applied for every one I’m qualified for, and generally receive no response. My old hardware (the laptop is so close to being a decade old that I CALL it my decade-old-laptop) doesn’t qualify for whatever they need me to do. I even apply for things I’m not qualified for, and hope for responses that never come.
9. What about temp work?
I’m registered with every temp agency in the area and I call them weekly. Some weeks I land a couple of days doing data entry or filing or something, but most weeks my disabilities keep me from being on their hireable list.
10. Why do you sometimes need food money and other times you don’t?
We are part of the CalFresh foodstamp system. We get $200 for groceries, and that refills on the 5th of every month. We stretch this as far as we can but usually it’s gone by the third week of the month. Once we run out of food, I start asking for help. Usually I go without eating several days so my wife can have the food we have left. I only start asking for help when my wife is being forced to go hungry as well. We have tried any food banks and donation systems in our area, but most are run by “the bad kind” of christian, and tend to turn us away because my wife is Jewish.
UPDATE (10/28/16): We have found a food bank that is willing to help us out, and are currently in the application process for their help. As of this update, however, they are still reviewing our finances and haven’t approved us yet.
UPDATE (11/19/16): We managed to get our amount for FoodStamps increased to $330 a month, starting next month. It isn’t MUCH better, but it will help. The food bank claims I bring in too much from donations to qualify – and no, they don’t care that the money is going straight out for my wife’s medication and gas for the car.
UPDATE (12/09/2016): Our food stamp date got moved from the fifth of the month to the 12th, somehow. They’re supposedly going to move it back, but in the mean time we are without food.
UPDATE (12/31/2016): According to the system, our date is back on the 5th again…I am not sure I believe it.
UPDATE (1/18/2017): Our food stamp refill date IS back on the 5th. We have food stamps this month and haven’t needed money for food yet.
11. If you go without eating so often, why are you both so fat?
My wife has Cushings Disease, as I mentioned before. This causes her body to retain weight no matter how much she moves. When she first developed the disease in her teens, she was doing ballet 14 hours a day – and still gained 100lbs within a year and was forced to stop what she had chosen as her career at that point. The Cushings wasn’t officially found or diagnosed until she was in her 30s. Doctors at the time blamed the weight gain on her father taking her out for a hamburger once a week, rather than even bothering to look at the circumstances or situation she was in.
I am heavy for two reasons – one, I have a genetic predisposition to being heavy. Both of my parents do as well. They weren’t able to start losing weight until their 70s. Two, my chronic pain from spinal stenosis and degenerative disk disease causes me to be 80% sedentary. There are very few positions and places I can be where I’m in very little pain, so when I find those places I have a tendency to stay there. This has lead to all sorts of complications and I am currently going out of my way to walk regularly and work out at the free gym equipment at the local park whenever I can. I am losing weight, but I have a tendency to plateau around 330lbs and I don’t seem to be getting any smaller.
I lose weight easier when I am on my intra-muscular testosterone injections, but I haven’t been able to afford my hormones in almost a year. This has caused me to gain some weight back, as well as causing me to have to battle harder against depression and dysphoria. My testosterone is $150 every 3 months. I find it more important that my wife gets her anti-stroke medication, so I let the things I need fall by the wayside.
12. If you’re broke, how do you play World Of Warcraft?
I have a little sister-by-love who can’t afford to help me much financially, but does buy me game time so I have a method to relax. She keeps me in game time, I don’t pay for anything in the game except with gold I’ve earned in game for myself.
13. How can you afford rent/internet/utilities?
Short answer is – we can’t. We live in my wife’s mother’s spare room (which was her office before we moved in). She can’t afford to help us out more than covering our living area, utilities, and internet – as we just use what she pays for in the house. When we were making regular money, we paid her our portion of those bills – we haven’t been able to do that for almost a year now. Our ultimate goal is to move into an apartment or house of our own eventually, but right now that seems a long way off.
14. What about bankruptcy?
I’m currently talking with several lawyers, trying to find someone who is willing to take our case pro bono, as we can’t afford the $1000 average it costs to FILE for bankruptcy in this state. I’m in negotiations with one lawyer who claims he can take the case pro bono if we provide evidence that we’ve been being called by collectors outside of the legal hours (which we have). So that’s where we are with that right now.
UPDATE (11/19/16): The minimum they’re going to charge us is $200, which I don’t have. So for right now, the cases are on hold and we can’t go forward with bankruptcy.
UPDATE (12/31/16): Still don’t have the funds for the bankruptcy filing, so this is still on hold.
UPDATE (1/18/2017): I’m meeting with a lawyer on the 24th to discuss options and see what they can do for us. So we’ll see – this possibility might be back on.
UPDATE (2/8/2017): There was nothing the lawyer could do for us. We’re still left with this option on hold.
15. Welfare? Disability? Social Security?
We’re waiting on a ruling on my wife’s federal and state disability claims. Mine have been denied due to reasons outlined above. We don’t have children, and therefore do not qualify for Welfare. Neither of us have worked “straight jobs” for long enough in our lives to qualify for Social Security – we never paid into it enough.