Tuesday, June 9, 2009

Considering SSDI

I’ve been considering SSDI A LOT lately. Way more than I should be I’m sure. I am just so freaking tired of getting up at 5:15 four days a week and not being able to sleep 8+ hours a night because I can’t fall asleep. However, I am hoping that when I get into my mom’s, things will die down in my head – since most of my sleep issues are self inflicted. I did buy Melatonin like everyone suggested and took that. It worked but I took too much. Now I am afraid to take anymore, even making the dose smaller, because I am exhausted. Though, I am considering taking it tonight so I can be sure to sleep.

I also keep thinking about everything that I could be doing instead of sitting here at work 10+ hours a day. I don’t get to see my friends nearly as much as I would like. I don’t get to see my family nearly as much as I would like. And I don’t get to do the fun hobby things that I want to do. Also, I’m scared to death to go back to school because I’m afraid that I will run myself ragged and make myself sicker. I’m worn out and worn down and so so so bloody tired!!!

If things were different and I could sleep on my days off maybe I would not be so inclined to go out on disability. Unfortunately, if I sleep late on Wednesdays then I can’t fall asleep that night and it turns into a huge snowball effect. Same with the weekends; Saturdays I can sleep in but one day out of 7 is not refreshing.

This boring, never ending project I’m working on has a lot to do with it as well. I’m sick of looking at it and see no end in sight. Every morning I get up and dread coming in to work on it. I can’t do work I don’t like, I’m not made of that material. I need to like it and right now I don’t. I don’t mind it so much; I just don’t want to do it anymore. I like the job itself, just not this aspect of it.

If I can last until the fall I will be ok financially. By then I will have been in my mom’s a few months and she will be back on track. I will be getting money in November from a CD I invested which can help pay for COBRA. I also have the money from my 401k that I am more than willing to use to help make the payments as well. Furthermore, I am hoping that maybe I can go on LTD until SSDI kicks in and then cancel the LTD and do straight SSDI. Getting a part time job that pays a couple hundred more a month would really help too. I wish I could talk to my LTD company without raising any red flags and get all my questions answered.

I just need to make quite a few lists to get me thinking. And figure out what I can afford and can’t afford. What my options are and if this is feasible at all.

A part of me wonders if I am just being lazy and not wanting to work, so I’m using this as an excuse. But thinking about it, is it really that big of an issue? Why should I care if I’m lazy and don’t want to work. I don’t have the next 45 years to work to save for retirement, so why can’t I spend what I do have left, retired? I wasn’t brought up that way, nor do I have that mind frame of working is why. I’m a hard worker; I was taught you don’t get what you want without working hard for it. So how do I change that frame of mind and accept that I might have to stop now, while the going is good. Or that I might not HAVE to but I should WANT to.

This is a huge step for me since I was so hell bent on working until my Jeep was paid off. I still have 2 years left as of this month. I refuse to give it up and would much rather default on my credit card than give back my Jeep. But I also have student loans that need to be paid. Those I am sure I can get the payments down if I am not working and only collecting.

Another issue in my head is being able to get loans for school if I do this. Will they allow me to borrow money knowing I am not working and might not go back after I finish school? I will go back to work as soon as I can after transplant, but who knows how long until that happens. How can I be sure I will be able to afford school? Getting grants would probably be easier than when I am working so perhaps I won’t have too much to worry about.

As you can see I am mighty torn. But I am finally at a place where I am truly considering it and might even be excited about it. I still have a lot of things to work on but the road isn’t quite as bumpy as it once was.


  1. I'm not sure if you want any advice on this so I won't post any, but if you do, please contact me.

    It's amazing how many things CF can affect that aren't attached to our body isn't it? I've been through the whole SSDI mess and work or not to work thing and it's actually the only part of CF for me that is frustrating...and insurance of course.

    Anyway, I'm glad that you are in a better place about it all and I'm always here if you need to talk.


  2. Thanks Ronnie!

    I am always up for hearing advice....never promise I'll take it ;)

  3. hey amy,

    i worked from the ages of 16 until i was about 28. after i began getting sicker i applied for ssdi. it was the best choice i ever made. i have so much time to workout and take care of myself it's amazing. no more having work stressing me out and i just love the freedom to go wherever whenever!! i dont get much a month i get about a grand but that helps me out. i also run any errands that need to be done and thankfully my parents are in a good place financially and they can support me when i need it. which really doesnt happen to often. i get medicaid and medicare and they pay for all my meds and hospitalizations. let me know if you have any questions. btw, i just got back from a ten day cruise in hawaii!! woohoo ssdi rules. lol. xoxo.

  4. Thanks so much for your response sunshine! Going on state/federal health insurance has me a bit nervous! I am glad to see it is working for you.

  5. go to my cooking blog--- I have a bloggy award for you.

  6. Just thought I'd say hi... I just started following you. I am Becky, mom of Ricky, who is 13 and has CF and other issues.

  7. Hi Amy,
    I did SSDI when I was in college. The day I graduated I started working.Luckily, I for a great place to work. Once I started being hospitalized more and the idea of a transplant can up my boss brought up the idea of setting me up to work from home. This was the best thing I ever did. I have been working from home for almost 2 years and my employer still seems happy with me.

    Have you considered finding a job that you could work 100% from home? I am able to sleep until 8:29 and be logged in for work at 8:30. I also have home health come in and it does not disrupt my day.

    I know working from home has kept me healthier than if i kept ging in the office everyday and I think it is the reason i haven't needed the transplant yet because i was going down hill fast.

    This is just something to chew on. Oh by the way, I feel the same way as you on my retirement. For some reason I feel I must save for it even though I probably won't be able to spend it.

  8. So many decisions to be made. I know you are so torn, and I'm sorry you have to go through all of this.

    Sometimes it is so hard to find the path that is best for us. I hope you find yours soon.


  9. Amy-
    I think it is great that you are questioning your thoughts before just saying this is what I am going to do. I think quitting work is a hard decision for everyone. It a lot of ways people tend to believe that by quitting work, CF is winning.
    With that being said, I say that as long as the decision is your...CF is NOT winning.
    Cory only worked part time. He ran himself down a lot during that time. He would go to work when he was running fever and when he was tired because he never wanted to be treated any different than the other employees. When he did finally decide to quit completely it gave him more time to concentrate on his health...Such as working out and the health issue became 1st.
    I think you have to do what you feel in heart is the best decision but you are asking yourself all the right questions

  10. Thank you Michelle, that made me feel a lot better. Sometimes I think I am thinking too much into this but it is me and I over think and over analyze EVERYTHING!

    Thanks for all the great responses. I have started keeping notes of all my options so that by the time November comes around I will have a plan in place. November is my "target date".