Thursday, January 8, 2009

So very tired

I have been sitting at work all day trying to concentrate but I can’t. I’m just so tired. Partially because I was up kinda late reading. Partially because I am just tired. Worn out. Done. I keep thinking about how nice it would be to work 4 days a week and only 5 hours a day. Or 5 days and 4 hours. Something small and little and short like that. But instead I work 4 days a week for 10+ hours. And I only do this because I NEED health insurance and I can’t afford to get it on my own. Besides COBRA is 18 months. Again with this whole shit I know. Are you sick of reading about it because I am tired of writing about it?

After the holidays, we all came back to work and those people that were gone for the full 2 weeks were happy to be back. I was not one of those, though I was close only being in 2 days between Christmas and New Year’s. My cubby-buddy commented that she could never stay home all the time because she would get bored not working. Me, I think I could get used to it. The ONLY reason I stay is because of the health insurance. It is fabulous. And the only reason I don’t go part time is because I lose my health insurance and have to COBRA it. It’s all or nothing with my company.

I don’t want to work anymore. I don’t. Plain and simple as that. I am tired of getting up at 5:15 to do an hour of treatments before work. Then working all day, coming home eating and doing another hour of treatments before I climb into bed to read for an hour. And I’m tired of still not being able to fully function when I do my treatments. I’m tired of spending my days off in bed or lounging around because I have no energy and want to conserve what I do have. Maybe I am feeling this way because I woke up with a nasty sore throat and swollen glands that won’t disappear.

Where do people go that have no where to live and no one to support them? I don’t trust living with my mom. She is too financially unstable to feel comfortable staying there. I would end up having to loose something of mine so I could help with bills more than I could afford. That would totally suck. I would consider my dad but they don’t have a lot of room. And I don’t want to impose on my brother and SIL even though they said I could always go back to living there. I am in no way asking any of my friends to help me out. That is too much to put on someone. They have families and kids of their own, no need to adopt a 28 year old kid too.

I wish there was a place like senior living that was based on income, offered in-house everything like laundry and was close by. I wish I could live in those assisted living places. I wish I could afford to stay out on my own. I wish I was married. I wish I didn’t have CF.


  1. You sound like me the other day....I am now down and out with a miserable cold Take good care of yourself Amy!!!

    Yeah, I too wish there were such a place for "young adults".

  2. Technically on disability/ssdi you'd qualify for subsidized housing and/or government housing. There's some new places called Hope VI that are usually very nice and you wouldn't ever be able to tell you are in subsidized housing. They operate on a sliding fee scale so you could potentially have to pay very little. The ones around me are gorgeous. Anyway, you might check out to see if they have more info.

  3. Ugh, to work or not to work is SUCH a frustrating quesiton right now, huh? Right there with you babe, and sending lots of good vibes to help make this transition easier for you, whatever it ends up looking like.

    I'm setting up "the talk" tomorrow when I go back to my job. Blah on it all. Let's you and I just quit CF, ok?

  4. Can we quit CF??? Cause if so I am So on board!!!!!! :)

  5. I'm sorry Amy, I had no idea you were going through this. I hope a way out presents itself and you can get what you need.

  6. When I think about what you and Piper are going through - working full time (and beyond) - it is almost unfathomable to me. You both are fairly close to where I am, lung function-wise and I can barely get myself up to work a mere 20 hours a week; I want to quit entirely.

    I totally feel you. Who wants to spend every free minute they have either nebbing or sleeping because the tiny bit of energy they DO have is expelled sitting behind a desk for 10 hours a day?!

    If you apply for SSDI, you will have a monthly income (albeit small) and you'll be so broke, you'll qualify for Medicaid (I can't imagine why you would be denied if your sole income was disability). Also, have you researched your state's programs? There might be some other supplemental program available to assist with health care. For example, in CA we have GHPP...K has IowaCares in Iowa (though they don't really care much, haha). Just some thoughts.


  7. I was in the same situation you are in February 2008 I was always tired, and all I could think about at work was how much I still had to do in terms of treatment and getting sleep when I got home - and I finally just bit the bullet and applied for short term, and then later long term disability through my employer. I was really worried about the COBRA payments, because I also cover my husband (unemployed - so wishing you were married doesn't always solve everything :) - as it turns out, the company's policy is to continue employees who go out on disability under their health plan - so I am not on COBRA, and only pay the premium amount I was paying when I was still employed with my prior employer picking up the rest. Don't know how long this will last - but it was a surprise to me that they kept me on - perhaps your employer has something similar? I apologize if you've already checked this out in previous posts.

  8. Look into the SSDI etc. Ditto to what anon said. Enjoy your time. Most days being "poor" isn't so bad, trust me.

  9. I say we can quit what we want. Rhi and Amy, I'm officially forming a Cystic Union and we're going on strike starting today. You two are co-presidents. Our demand should be pretty simple: unlimited oxygen, anti-mucus prohibitions, and a flat-out ban on all psuedo infections past and future. Oh yeah, and backpay for pain and suffering.

    Seriously, I'm going to go recruit.

  10. Thanks everyone!!! It's good to know I may have options when I go out totally :)

    Piper I will recruit too!!! starting now :) Can we ask for unlimited energy too!?!??!?!


  11. I hear ya, girl. It's TOUGH having CF!

    I hate to hear about how tired you are. It seems like you really do have too much on your plate. I know you said you couldn't go part time at your job and keep your insurance, but is there another place that might offer this as an option? I know it is rare these days...I am lucky enough to work at a place that gives health insurance for all part time employees. I might be barking up the wrong tree, here but it seems like you need to change something. :(



  12. On second thought, let's all move to Canada! lol

  13. Laura -

    There are places that offer that but I wouldn't make what I make now and would end up making less then if I stayed and paid for my own insurance. That's half the problem. I make good money though not excellent so if I were to take a part time job I would take a significant pay cut and would certainly NOT be able to afford my bills :(

    Canada sounds like a plan!! LOL