Whenever I heard that phrase, it was always connected with a
raise or an increase in benefits. After living with MS, and being on disability,
it takes on new meaning. There really is
a cost for living – not just existing – but real living. At one time, when I was employed, and life
was fairly normal, I gave no thought to many of our expenses. If we needed
food, clothing, amusement, I just went out and got it. I wasn’t a spendthrift,
and I certainly wasn’t wealthy, but I didn’t give a thought to these purchases when
they were warranted. If friends asked us to join them at a restaurant, or if we
decided on a pizza night, it didn’t require any thought. My Saturday errands
always included the dry cleaner, the drug store, the deli, and the supermarket,
with occasional stops at the mall or shopping centers. This was the way we,
well, lived.
When I first opted for SSDI, I was really dumb enough to
think my life would go on as before. It didn’t take long to realize that such
living was over. My husband took over the banking and finances because for
awhile I was depressed and not willing to do much. When he sat me down and
explained that things had to be very different now, I’m not sure I fully
comprehended. However, I soon shocked myself into reality. The cost of living
that other life was too high, and we would need to cut way back. Even with
those cost-saving measures, life hasn’t been easy. I have to analyze each
expenditure, and decide if I can do without. I give up some things in order to
have others, and I’ve lost all contact with the actual price of things!
My husband does the shopping, so I’m not sure what he
spends, but he’s much thriftier than I. When
I entered the supermarket with him the other day (first time in a while), I was
blown away at the prices. There was such an increase from when I used to shop! Then
we had to shop for my grandie’s birthday gift, and even there, I got a shock at
the high cost of everything. Perhaps I’m better off just staying at home.
I wish I saw an end in sight, but I know things really won’t
get better. Now, not only has my quality of life changed, thanks to MS, but so
has the quantity. I really do need a COLA in my life!
Peace,
Muff
10 comments:
Oh my, yes. I read with a sigh the retirement recommendations financial publications have for someone my age, just short of normal retirement. The adjustment you describe has been brutal. It is not only that income has come down but also that illness-related expenses have gone up.
Judy
Hi - "ditto" for me. I am on SSD, and until age 66 I have Long Term Disability from my work which is very nice - but in 6 years well, that is a ways off. It is still an adjustmentnow AND my husband hot laid off a year ago - so unemployment is way les than he was earning. But despite all the adjustments to how we live I love every moment we have together - it is all so bittersweet, the realities clashing.
Love to you
Gail
peace.....
although i'm still working, i can relate somewhat to what you are saying. coach & i haven't had a raise in more than 4 years.... and the cost of living has risen so much that it's just devastating! to feed two people used to cost me about $75 a week at the grocery store... now it's up to about $160! for the same things! we are very routine in our purchases - some call it a rut though haha
and gas? holy cow...
I was just discussing this with someone. The costs of living have gone up for everyone add to that the decline in income that SSDI brings it is humbling at least and somewhat demoralizing.
The double whammy!
You are correct. I have been on SSDI for 8 years. No pension, no long term disability from work, and no supplemental income - nothing but social security. It sucks. Makes life hard. My doctor wants to start me on the MS meds Rebif or Betaseron, but medicare doesn't pay enough and my income certainly won't cover the out of pocket costs, so I do without, endure the symptoms, and try to keep going. It's a sad picture for all of us living on disability incomes.
I did the same before SSDI...did not think much about the money. It is necessary nowadays...Yes I am shocked at the prices also
Since becoming ill, we have had to live on Hubber's income alone. No disability pay, no insurance, no pensions for me, non, zilch, zero, nada. Hubber's has lost a job twice in as many years. It's a whole new life...and it ain't easy.
Oh my, I think I hit a nerve here. Sometimes I think I'm alone in this, then I reach out and find so many others in the same boat. I sometimes think that if I had just prepared a little more,things would be better, but how do you plan for MS?
Thanks for sharing.
Peace,
Muff
I, too, live on my just less than $1000 SSDI "entitlement." Years ago, when there was a zero premium, I signed up for Secure Horizons, which paid for all that Medicare didn't cover: the 20%, and the difference between the Dr's bill and what Medicare approved.
Since then it has become AARP Medicare Complete administered by United Healthcare and I pay (because I am low income) a paltry $85.40/month. It pays for most of my drugs, and the ones it doesn't cover are inexpensive, my doctor's appt's., tests, just about everything. DSHS picks up the difference and the co-pays.
Also, you need to check out what they consider low-income, because it seemed pretty high to me.
Never did I think I would be grateful to be poor. I pay NOTHING for my Copaxone. Also, Shared Solutions does not want anybody to pay more than $35 co-pay for that drug... THEY will pay it for you. So talk to your drug companies to see if they have similar programs.
As for "Living" - well, I don't go anywhere, I don't do anything, and am content that my computer works and I can get books on there from the library.
Thanks, Webster. I did check about Assistance, and we're not eligible. For awhile I was with Shared Solutions for Copaxone, but they called to say I'd be dropped once I started getting Medicare. It was ok, though, because I had already decided to stop taking it. I admire the fact that you're content just staying at home and reading. I'm way too antsy, and I need diversions -- free or cheap!
Peace,
Muff
Post a Comment