Friday, September 28, 2012

What I Wake Up to Each Day

Waking up to my reality each day is  difficult. I'll list the issues lest I continue to be accused of being too negative and thus not worthy of interacting with (PWME's have a different attitude).

Yes-I'm angry and discouraged. I'm angry that I'm dealing with all of this stuff alone. That because of the stigma of the label of this disease I do not qualify for assistance. I don't like feeling helpless.

Here's the issues I wake up to each day:

1. Isolation-no friends. No one to talk to. No one. Can't afford therapy

2. No money. I'm going to be out of savings by April or May if the money keeps going like this. I need clothes, shoes, socks, more blankets, food, pajamas, a robe, flannel sheets (I slept on some last night and had bad night sweats but the water just sort of sat on the sheets and it was so uncomfortable I ended up taking them off the bed at 5 a.m. this morning. I don't think the sheets will work for me as long as I have these night sweats. That's why I'm awake after 4 hours sleep.

     -over $5000 went towards pet care
    -over $1200 went towards car repairs
    -$1500 worth of medical bills-(welcome to Medicare)
    -$1200 more worth of medical bills sitting on my desk that I cannot pay
    -I need new glasses but can't afford them

3. Once my money runs out I can only afford $500 rent and that's with a food budget of $200. Food these days is more like $400 per month.

4. I'm angry that over 50% of my SSDI check is spent on Medicare premiums, and a damn student loan that's killing me.

     -I cannot discharge this loan.

     -My Medicare drug coverage plan won't be offered next year so I have to find a new plan which takes tons of research because its so confusing.

     -the premiums for drug coverage have increased, and the plans currently being offered are going to cost me double what I paid last year so I have to figure out which medications I can go without.
5. The money I have leftover to live on leaves my quality of life poor, my choices for housing poor.

6. I can no longer afford supplements, or treatments for my ME/CFS other than what's paid for by Medicare. Ha! As if there was any treatment from the medical community.

7. No way to earn more money because I'm too ill. If I were healthy I would be working my ass off right now to meet my expenses.

8. I'm trying to get on Section 8 wait lists. Unfortunately all but one county so far is full. Applications open up rarely and when they do it's just to get on a wait list. That's what opens up-the wait list not an actual place to live.

9. Managing this illness is challenging as we all know. I fear getting worse because I can't afford treatment.

     -I'm trying to find a doctor who takes Medicare. I'm continuing to have bleeding under the skin. I also have a skin cancer on my arm that needs removing but there's no way I'm paying the amount of money it will take.

10. I feel like an utter failure about the money. It's not my fault. I didn't plan on those expenses. I fear the judgment of various people regarding it. Luckily they won't have to worry about being saddled with my care.

11. I do not qualify for food  stamps or any other aid because I make too much money. Yeah right.

     -again its that damn student loan. It doesn't show up on my credit nor can I provide proof that I'm responsible for a student loan because my name isn't on it. My ex's name is on it so I get zero credit and I get denied aid because I can't prove I'm paying it so in the eyes of the government I have that extra $302 when in reality I don't.

12. I also dont' qualify for any type of credit card because my name is on the house deed so it looks like I have mortgage payment. Crazy right?

13. I have to find a new place to live. I don't want to. I'm too tired. I'm tired of moving, of being in transition. I desperately need to feel settled. It's discouraging looking for housing because the rents are high due to the housing market, and the roommate rentals that are open do not want anyone who is disabled.

14. So when do I have any money or energy leftover to socialize or do the things that feed my soul?

15. I would love to be comforted. I would love to break down and cry with a friend and talk about how scared and alone I feel.

17. I'm getting worse physically due to the constant stress and the fact that I'm doing too much for what my body can handle.  I don't know what I can cut out. I'm back to being in bed most of the time.

18. I fear the choices I will be forced to make as a result of all this.


Anonymous said...


I realise you don't know me, and I found you via Joanne's Looking At Lyme web site... But I wanted to let you know I read this entry and you're not alone with these issues and problems.

I have been sick and not working during the past three years due to symptoms which appear to be chronic Lyme disease, a controversial diagnosis. I also don't know how I am going to manage in the future, and have lots of debt. I'm only surviving as well as I am now because someone else has been helping me. A lot. (This could end at any time, so I realise how lucky I have been.)

I'm thinking about your student loans and am, well, shocked that you have to pay for someone else's loans. Why? Isn't it their responsibility to pay them? I don't know the situation, obviously, but in your shoes I would be looking for a lawyer (pro bono) who would ensure the party whose loans they were would be the one asked to pay -- not you.

If you don't have to take on this responsibility, it would be good to see it off your shoulders and to have more money (and less stress) in your life.

Best wishes -- Anne

me/cfs warrior said...

Hi Anne-

Thank you so much for stopping by my blog and leaving a comment.

It's very stressful isn't it? I'm really glad that someone is helping you.

It sounds like you started getting sick 3 years ago?

The student loan is unfortunately mine. My ex was kind enough to cosign it but her name is on the loan and mine got removed for some reason.

It would make my life so much less stressful if I didn't have those loan payment. I could actually afford a place to live if they were gone.

I never realized how stressful money problems are.

Thank you again for your comments. I'm sorry that you are in a similar situation.

Reading the Signs said...

This kind of isolation must be very hard. But the words you write here reach people. They have reached me. I listen.

me/cfs warrior said...

Reading the Signs-thank you. That means a lot-thank you for hearing me.