Dinner and River for my Birthday

I find my stomach constantly in knots these days over money.  I have some old debt and I have to use my $745 that Medicaid allows me to keep every month, and it isn't even enough to cover the minimum payments.  A few months late and they put me up to the highest interest rate.  So I wrote letters and said that I want to pay them off, but I need a better, more manageable payment plan.  They don't respond, but keep sending me letters saying that my credit rating will hurt if I don't pay.  Well, what do I need a high credit score for?  It's not as if I am buying a house or a car any time soon.

I'm not looking for help, because somehow I have to get myself out of this.  I incurred this debt when I was bringing in more than twice what I am getting in disability now.  And I always paid more than minimum, or in full, on time.  But now, I have to scrounge money sometimes just to be able to buy groceries.  As I said, this is my problem, and my problem alone, but it has my stomach in knots, and telling my aides not to pick up the phone when it rings. Maybe it's a blessing that I am stuck in the house most of the time, so I am not tempted to spend money.  And it's not going to get better any time soon -- it can't. Oh well...I've investigated refinancing, but I am told that any extra money I get, will be income, and will have to be given up to Medicaid, who always looks to be "paid back".  And now they are telling me that I have to start paying $109 more to the home care agency.  I don't know where I am supposed to get that money from.

On a positive note, I passed another birthday, so I am grateful to be here another year. And I am not saying this to get birthday greetings -- the birthday is over.  Last Saturday, my dad took the whole family to dinner here in Rego Park for my birthday.  His cash gift saved me until my next disability check. Yesterday Louise and Judy gave up an entire day to go with me to the Long Island City waterfront, and treat me to a beautiful lunch at the Riverfront Restaurant.  The nicest gift anyone could have given me was to get me out of this apartment, so I am grateful my birthday was a good excuse to go to dinner with the family and out to LIC for the day.  And I look forward to Judy's weekly visits with me to Starbucks.  I accept the fact that going out to dinner and a movie, or just out in the fresh air, is not something I am going to be doing this summer. And I'm grateful I got to see water yesterday and at the ALS Walk a few weeks ago, because I used to live for the beach.  It was a hard thing to hear the truth a few months ago-- that I wasn't a very nice person when I was healthy.  But I needed to hear it, so I could let go my feelings of abandonment from former "friends".  It makes sense that they wouldn't want to come around with me in this condition, when they weren't crazy about me before.  I guess they're not such uncaring selfish people after all.  I always laugh when I hear caregivers say that they want to get their patients out, but they don't want to go out.  I want to say to them  "Come on over, and take ME out".  It takes a special person to go outside with an ALS patient because we inspire such discomfort in other people.  I wish I could say it was different, but it's not.

Thank goodness I stayed in my apartment.  I have come to accept that I just won't see the inside of the bathroom or kitchen again.  There's nothing I can do about that.  Remodeling is out of the question forever -- costs too much.    I ave been using my time inside to write,, but that is becoming the dream that won't happen either.  Self-publishing costs an outlay of money, and I'm not sure anybody would buy my book anyway.  There are so many books out there by ALS patients who have huge networks of support, and a lot more to say.  Anyway, I trudge along, grateful to see another birthday, but wishing I could find a way to make it a little more pleasurable. I feel that I have no right to self-pity when other ALS patients are dying around me. I try to be grateful just to be alive.