Last week the Access-a-Ride driver referred to my aide Lynette [who is one year younger than I] as my granddaughter. I looked in the mirror, and I knew why. I have had to stop coloring my hair and getting haircuts. Before ALS. I colored my hair at home with a $7 box, and had the salon color it when I had extra money. But now, $100 for a wash, color, cut, and blow, is totally unjustified when I am working hard to buy food and toiletries. So I guess I am destined to look like a grandma. Thank goodness my sister introduced me to a site where I can do work online for Amazon gift certificates. I was able to buy Depends through Amazon last week.
A few dollars saved is my big high lately. At support group on Monday, I said that money has been a challenge for me, since the $725.00 that Medicaid allows me to keep every month, is eaten up by monthly minimums on old credit cards, which have gone to 25 or more percent interest due to [in some cases] one month of a late payment. There is no way this can ever get better for me, so I can look forward to scrounging for basics and looking like a grandma of a 50-year-old for the rest of my life. It's a good thing I rarely get invited anywhere anymore. A few people at my support group were my angels last week when I said I didn't know where I was going to get the money for groceries for next week, and so was going to put my fingers to the keyboard for Amazon credits.
Speaking of putting my fingers to the keyboard, reality hit hard last week. I told my sister I needed to make more online to straighten out a miscalculation that is putting me more and more in the hole. She referred me to a site that answers questions from people on mobile phones. But, alas, I don't type fast enough on the laptop keyboard, and I failed the test. My rinJg finger and pinkie on my left hand are stiff, and slow me down. But thank goodness my sister Haley finds these opportunities, because often they keep me going in groceries. And the groceries she sent from Trader Joe [my favorite place!] and the cash help Dad gave, came just at the right time!!
But I did go to PS1 with Jen and Judy. Moneywise, I really shouldn't have.......$5 to get in, $4 access-a-ride, $7 in the cafe. I just really needed to get out of the house and go to a museum. Jen and Judy are two people who still want to explore places with me. Exploring neighborhoods and venues was a big pastime of mine, pre-ALS. Sadly, I am going to have to tell my neighbor I can't swing dinner out this week. It's a real case of "be careful what you wish for", because it will be a while before I can accept fJriends' invitations, if ever! So I don't complain about loneliness anymore; time alone in the house is money not spent. This is all very depressing for me, especially in summer. But it has to be this way. And, as lonely as it gets, the payoff is that eventually the phone calls may stop, and I can avoid getting sued and bankruptcy. Frugality is good for the spirit.
Yesterday, I went to the final appointment at the NYU Dental Clinic. For not having been to the dentist since January of 2003, I was pretty amazed that they found no cavities. And here was the best part: Lynette got them to reimburse my access-a-ride! I don't even know to ask for these things. They even gave me the name and number of an ambulette I can use next time to get transport for free. Evidently, with Medicaid, you get free transportation to and from medical appointments. Why did I not know this, and who was supposed to tell me? The doctor's offices when I booked the appointment and told them I was on Medicaid? The social worker at the ALS clinic? If you don't grow up in a home where family members collected benefits [handouts] from the government, you don't what to ask for, and they don't tell you. It really irks me to see immigrants/refugees in my neighborhood paying for groceries with food stamps, getting into private ambulettes and walking around [often with no cane or walker] with their home attendants. How do they come here, speaking no English, but finding out this information I never know about, even though I have worked hard all my life, voted, and paid taxes???!!!!!
So, I can't justify any unnecessary spending, like entertainment, eating out, beauty treatment. Maybe this was meant to happen, so that I could have more time alone, and not focus on what I am NOT doing this summer, and who is NOT including me in summer fun. Instead, I have to, once again, see what I can sell on eBay.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Friday, August 1, 2008
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Thanks for the comment. I liked reading through your blogs, keep on writing!
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