Posted on April 9, 2017
Posted on April 9, 2017UPDATED DONATION VIA LULAROE 1000$+
Posted on January 22, 2017
Posted on January 22, 2017Happy birthday Lisa. (Belated. 1/17/86!) You made it to 31! And they predicted 5 years in 2010. Way to show them they were wrong! I'm baking your cake now. And then onto wrapping presents 😜😏
Posted on January 21, 2017
Posted on January 21, 2017
Life is expensive.
Lisa gets a meager 730$ a month.
That's 4.57$ an hour on a 40 hour work week for perspective purposes.
She lives alone now, in the same house her and my mom lived in. I was able to get her grandfathered into HUD and it's a 2 BR apartment but she's NOT allowed to have a room mate. She does have a personal care assistant allowance which I will go into more in detail later. In the area that we live in, her rent is quiet reasonable. But there has not been a lot of things done over the last 17 years that she has lived there. She cannot find a comparable apartment in this area (a stones throw away from me for emergency purposes) for the amount she pays now, which is 700$ of which HUD pays a significant portion, however they do not pay it all.
For that reason finding another apartment in our county is unlikely.
(another comparison- My house that I own would rent for 1250$ a month)
I can not imagine living on such a little amount of money and that's what she gets for the whole month -every month. Heck my mortgage alone is 950$...
Lisa no longer has my moms income to help her. Her food stamps do not cover all her food. Her electric bill alone takes a significant portion of that 730$ a month. (200$)
Not taking into account the myriad of other living expenses that come up.
Examples of what she currently needs and why:
Her 'rent' has gone up (the portion she has to pay minus the HUD (Section8) I got her grandfathered into). This was not expected. I still don't understand why and they have no answers. Bureaucracy B.S.
She lives in an older home that is in need of many upgrades. She has lived there for 17 years.
Predominantly she needs the living room and hallway floor replaced. Not to mention the carpet in her bedroom from 1996. The landlord will reimburse (to a reasonable extent) the materials. However, labor is up to her to pay.
Why does she need a new floor?
The current floor is not conducive to maintain respiratory health. It is an older dingy carpet. Hardwoods, even engineered ones would eliminate the musk, dander and mildew that this carpet creates. Estimated cost for proper installation in her bedroom and living room to include hallway is 500$.
It also needs a vent fan in the kitchen so that the fire alarm doesn't go off every time someone cooks. (Not good for respiratory issues). This would probably run 200$ and my husband could install it but it has to be run through cabinets and out the side of the house because of where the stove is located.
She also needs an air purifier because of the amount of particulate matter in the air because the house has metal studs and is poorly insulated. When the studs cool down dark streaks are then formed and are very apparent on the wall because of the dirt that is currently circulating around her. This is not good for her health. A good air purifier for 800 sq feet runs around 400-600$.
This is does not include the incidentals that aren't covered by Medicaid. Vitamins for osteopenia, food -proper food- because her weight and physical health is a huge factor in transplant eligibility. She need a fruits and vegetables. Etc. and 140$ in food stamps doesn't cover it all. Not to mention toiletries etc that must be bought out of pocket.
Since she she was diagnosed at such a young age (24 years young) she only qualifies for SSI and not disability (SSD) as she didn't earn/pay enough into the system to qualify for this.
She currently has 16% lung function. You and I have 95-100. Let that sink in for a second. Yes Lisa has cable TV. And this does eat at a chunk of her monthly income up as well. It isn't something she needs to survive but it is how she LIVES. This is her entertainment. She cannot go out to the mall without extensive planning, extra oxygen tanks etc. TV, movies and games are her life. She doesn't get to do the things we all take for granted. She will never have kids. She will never get married. She will never fly on a plane. She goes out to maybe 1-2 movies a year. Out to dinner with us 3/4 times a year. All this excursions are extremely difficult for her.
She has to travel back and forth to the hospital for testing for her future (should she become eligible and there is no guarantee) transplant periodically. She lives approximately 160 miles away from the Lung Transplant Center in NYC. Some of these expenses are reimbursed (months later) some (most) are not. Meaning she has to put up that money and hope to see it sometime within the subsequent 3 months post trip.
She does have personal assistance budget of 20 hours a week. This is state funded. Currently Joshua and I are her personal assistants. We do the cooking, cleaning and shopping for Lisa. But let's be honest. Josh and I both work more than what is recorded on the time sheets. He just took her to NYC (14 hours total without reimbursement) we do this because we love her. This stuff we have under control, but it pains us both that she can't just have a new floor, or worry because her water bed mattress just popped and now she's broke until the end of this month. Or get bronchitis from poor air quality in the home.
Instead, she should be focusing on staying as healthy as she can. Eating right. Exercising as much as she can on her treadmill to improve lung capacity(if possible) achieve a health weight. All these things she should focus on. But she shouldn't be stressed about money to take care of herself. Or live with poor air quality.