Community Fundraisers: When Your Own Home Is Killing You

Tonya and daughter Miranda.
Photo copyright Tonya Harris, 2014; all rights reserved.

IMPORTANT UPDATE: Tonya spent yesterday at the doctor's office, her blood pressure dangerously high, and was not able to take care of pawning what few items she could to pay the application fee and certain bills that are due today. The $25 housing application fee MUST be paid today, or she will lose her chance at getting the mobile home. There are other small bills that must be paid today, too, but those are bills that could be paid directly to the creditor rather than waiting for funds to clear for Tonya to do it. If you can help with any of these, please e-mail Tonya directly at tonyahky [at] yahoo [dot] com to find out how. Personal thanks from me to anyone who can do what I can't, which is to help her out this way this morning.

They say what doesn't kill you makes you stronger.

Or, sometimes, it just delays the inevitable. 

This is one instance where I'd like to make sure that it's NOT inevitable.

You may remember that last summer, we mounted a fundraising campaign for Kossack tonyahky, who could not even schedule desperately-needed major surgery without the capacity to hire a full-time caregiver for one of her daughters, who has profound disabilities. We were fortunate enough to raise the funds she needed, and she was able to get the surgery — and then she learned that what she thought was a painful, disabling, potentially dangerous temporary situation was instead both chronic and much more complex. Life-threatening, in fact. 

Last summer, she believed that her only real health problem was an extraordinarily large fibroid tumor that could not be treated; it had to be surgically removed. The pain, fatigue, and illness caused by the tumor eventually made it impossible for her to continue to work, and made day-to-day functioning difficult at the best of times. Now imagine dealing with this while caring for a daughter with a profound case of autism and the special needs and sensitivities that accompany her condition. [You can read all about it in detail here.]

LIFE-THREATENING MEDICAL CONDITIONS

While awaiting surgery, Tonya was given injections of Lupron to try to help slow her heavy bleeding and perhaps shrink the tumor a bit, but she was advised that it would not be enough: The only solution would be a complete hysterectomy. Meanwhile, she grew increasingly ill; by late July, she was forced to see a different doctor just to get the surgery scheduled for September. Her condition reached a critical point during the middle of her fundraiser, forcing her to go to the emergency room at her local medical center, Baptist Hospital. Doctors there diagnosed her condition as severe anemia and told her she needed a blood transfusion. Once it was over, an area Kossack was kind enough to arrange to pick her up at the hospital and take her home. The following day, she heard from her doctor about her next Lupron injection.

And things got really frightening.



In Tonya's own words:

None of the doctors at Baptist Hospital had mentioned that my anemia may have been caused by a blood disorder. But luckily, the surgeon I had made an appointment with earlier would be operating on me at St. Joseph East in Lexington...this may have saved my life.  

In August, I had to take two trips to the ER--one for a superficial blood clot in my leg,which they told me was due to the Lupron shot, and another because I was having severe pain in my lower right ribcage. The doctor at the local ER told me the pain in my side was just from a pulled muscle. By the time my surgery was almost due, my hemoglobin levels had dropped once again. 

At this point, her health was in serious jeopardy, but she didn't know it. She went to a hospital in Lexington to have the hysterectomy, which was radical (i.e., total abdominal) hysterectomy, including removal of her ovaries. And the doctors there uncovered the source of her anemia, which had nothing to do with the intense bleeding from the fibroids. 

Tonya has immune-mediated hemolytic anemia [IMHA].

Hemolytic anemia is dangerous. We have reason to be familiar with it; it killed one of our beloved four-leggeds, as a result of a medication (prescribed by a vet) that she should never have been given. It's bad enough when anyone develops HA for any reason at all. The immune-mediated variety that Tonya has [IMHA, the same as our dog Hunter had] is a far greater risk, because it's chronic.

According to Tonya, that wasn't the only misdiagnosis she'd received:

They also found that the pain in my side was due to a severe lung infection, not just a pulled muscle. So I ended up being put on some heavy duty antibiotics--levaquin--in addition to high doses of steroids to knock down the hemolytic anemia. After about four days, they discharged me--but a few hours after I got home, I started swelling up very badly and could not breathe--I had developed pulmonary efflusion (fluid on the lungs), and had to go right back to the hospital that night to be put on lasix. After a few more days, I was finally able to go home. Thank heavens for the caregivers who came and helped Felicia while I was gone and in the days and weeks after.

Any one of these situations is life-threatening by itself. Taken together, she's lucky to be alive.

But it would get more complicated yet:

I had to see several specialists afterward- a hematologist/oncologist who had seen me in the  hospital treated me in the weeks afterward for the hemolytic anemia, and got me a referral to see a rheumatologist who, after many tests, diagnosed me with SLE [systemic lupus erythamatosis, which I discussed in BFSkinner's diary]. The rheumatoid arthritis symptoms I had been having are also due to the lupus. In addition, I saw a pulmonologist for follow up on the lung infection. He told me that I have a hole in my right lung because of the infection, and that the damage is permanent. He also told me that I need to move out of the apartment I'm in because of the mold--he thinks the exposure to mold made me more susceptible to severe infections like the one I had.

As I write this, she's back in her doctor's office, her blood pressure dangerously high. Part of it is no doubt the medical conditions she's battling daily; part of it may even be the combination of medications she's taking. But how much of it do you suppose is due simply to the stress of living in an apartment that's killing her?

LIFE-THREATENING HOUSING CONDITIONS

And so we come to the immediate problem, one that several of us have been discussing with her privately for some months now: Tonya's apartment is riddled with toxic black mold. The apartment manager will not discuss moving her and her children to a clean apartment. It's doubtful that would make much difference in the long run; it's entirely possible that the mold has spread through the entire building. There's only one proven method for eradicating black mold: razing the entire property to the ground and burning the rubble.

Black mold is toxic to people who are in perfect health — life-threatening, in fact. For someone with chronic inflammatory conditions, it's worse. And for someone with a compromised immune system, it's positively deadly.

And it's not just Tonya. Again, in her own words:

Because taking steroids weakens my immune system, I have had to take prophylactic doses each day of medications to keep me from getting infections--including anti-fungal drugs to keep the mold from making me as sick. I am constantly congested from the mold exposure--and my kids have also had a lot of respiratory illnesses since we have lived here, too. Felicia, my oldest, came down with pneumonia a few months ago. 

For children with autism, there are likewise very real risks that their health will be further compromised by the presence of the mold, as well. 

Black mold seeping through the walls and floors of Tonya's apartment.

 So Tonya knows that she needs to move. And she's been trying to make it happen. But the universe sometimes has a cruel streak. Apparently, it has decided that Tonya hasn't taken enough hits yet, despite the fact that she's already survived more than most of us will ever face in a lifetime:

Well, since you can't move without money, I went and found a job as soon as I thought I was able to do so. I finished the first round of steroids I was on after I was hospitalized, and the doctors believed it would be a long time--if ever--before the hemolytic anemia returned. 

Unfortunately, it came roaring back at the end of January--I passed out at work (at the job I had just started) and had to be hospitalized again and have yet another blood transfusion. (By the way, too many blood transfusions are dangerous for somebody with with a lot of warm antibodies. Whenever I need blood, it has to be specially typed and screened because of this. It's hard to get a good match for me.)
The doctors also learned recently that I also have some sort of anti-phospholipid syndrome. To make a long story short, it makes me get blood clots more easily--this is probably why I got a blood clot last summer. 

Meanwhile, the steroids have been doing a real number on me. I gained weight around the middle, and I have started losing some of the bone in my jaw. Some of my teeth have started crumbling, and eventually I will probably lose them and need dentures. My hair started falling out, too. Luckily, I started out with very thick hair, so I didn't go bald, but it started looking so ragged I had to cut it off short. 

Those of us who have ever been on steroids can testify to the nasty side effects. But they're keeping her alive. It's not an overstatement, though, to say that it will all be for naught if she remains trapped in her current toxic housing:

So basically, I need to get out of this moldy apartment. It's killing us--literally. And since this is Kentucky, there is very little I can do to force the landlord to fix this. I could take her to court to recover my moving costs-and perhaps even get some damages--but I will have to move out of here first.  

The mold is all over this place--in all the bedrooms, the bathroom, the hallway, even in the kitchen. This apartment is the lower level of a two story duplex, and it is partly underground. I suspect it is like this because the drains around the house are messed up--there are puddles of water that sit next to the house for days at a time after it rains or snows. The wood laminate flooring in here is warping due to the moisture seeping up from the ground.  

The only thing that will clean it is to take straight bleach to it. This will knock it down for a few weeks, then it comes back as bad as it was before. I never do this while the kids are here-it makes awful fumes and I feel sick for two or three days after I do it. I don't want them to breathe that stuff.

Of course, "knock it down for a few weeks" does NOT equal "eradicate it." It lessens the visible presence, but the spores remain there, still growing and spreading and seeping into the lungs and nasal passages of Tonya and her children, leaving devastation in their wake.

So how do we get her out of there?

Well, she's found a place, in a better location all the way around, and with very reasonable, workable terms — IF she can get into it in the first place:

The new place I found is a mobile home up towards Lexington. Ashley will still go to the same school, but it will be much closer to the doctor, and places I could go to work. The doctor has finally cleared me to go back, but she doesn't want me to take on anything to strenuous--in addition, a lot of the jobs around here close by require that you be able to work any hours they want to schedule you, plus overtime. There are better jobs in Lexington and Winchester, though it can be a process to get into some of those places. So this will also give me time to find a better job. The mobile home is very clean, sits up on a hill, and has no mold that I can see. I will also have the option to buy it if I wish--$50 of the rent I pay each month will go toward the down payment--I can pay the full down payment at any time after I move in, and convert the lease to a purchase agreement. Buying has a lot of advantages for us--it means I will be able to get help paying for things like alarms and other safety devices for Ashley through the Michelle P. Waiver--the state won't pay for that stuff if you rent.

Think of it: After all the existential crisis of her current living situation, to be able to live in a clean, healthy environment, in a place with better accessibility and better job opportunities, in a home that can eventually be hers outright.

HOW TO HELP

But, of course, when you're living on the edge, nothing's ever that easy. It all always comes down to one thing, the one thing the poor don't have: Money.

She's already gone through a drill that's all too familiar to too many of us: pawning items temporarily to raise the $25 application fee. She's doing the same to pay some bills and expenses that have come due just in the last few days — utilities, groceries, gas for the car to get to her next doctor's appointment, the co-pay on her prescriptions.

Assuming her application is accepted, she'll need $325 (half the rental deposit) next week, and the remaining $310 of the deposit, plus rent, upon moving in. Currently, she also needs to cover whatever she can't raise via pawn for the expenses above, plus the other bills that are about to come due: a couple hundred for her furniture payment (because when you're poor, rental is sometimes the only way to keep from sleeping on the floor); just shy of $300 for her electric bill; $50 for the phone; and, of course, gas and food for the rest of the month for herself and her children while she looks for another job.

After sitting down and going over all her expenses and moving costs, she believes that she can cover the whole thing for upwards of $3,000: current bills, security deposit, first month's rent, utility transfers and hook-ups, and the costs of the actual move itself.  She's set up a GoFundMe site to try to raise as much of it as possible in as short a time as possible. A dear mutual friend of ours convinced her to set her overall goal at $5,000, to ensure that she can cover all the other incidentals that pop up unexpectedly in a situation like this, particularly when serious medical issues are involved. Tonya herself, as usual, is typically modest: "[A]t this point I'm happy with whatever we can get."

Let's be clear about what this is and what it's not:  It's not a blogathon. It won't be a series of diaries. It's this one diary, as a pointer to her crowdfunding page. And some of us are already committed to helping her promote it in the days and weeks to come to try to get her out of an apartment that's killing her and into a clean, safe home for herself and her children — one that will have the added advantage of eventually being hers, outright.

And for those of you who hate PayPal, she's chosen a crowdfunding platform that uses WePay, a more socially conscious company and one that's better for the funding recipient. I can attest to that; we used it when we raised money last year to keep Miskwaki, our rescued miracle horse, safe from abuse and neglect.

If you prefer to send a check or a money order, simply Kosmail her at tonyahky, and she'll give you the proper name and mailing address. She's also willing to provide her phone number to anyone who wants to call her to verify her story.

Tonya is one of ours. For many of us, she's also a friend. And she needs our help. And if you can't donate, please share the link to her GoFundMe site with everyone in your networks, both online and in real life. You never know might be moved to be that magic donor. And when good stuff goes around, good stuff comes around. For all of us. It's the very meaning of "community."

Tonya's GoFundMe site is here.

And to everyone who tips, recs, shares, Tweets, "Likes," donates, or otherwise lends a hand, from me personally:

Chi miigwech.