What do you mean your husband has been bugging you to file?
Oh my gosh - I am so happy and relieved to see that this forum is included on this site. In June, my husband and doctor has what they termed the tough talk with me. My husband has been bugging me to file. My doctor said that it isn't time to yet, but that the time is coming. Boy this was hard news for a self professed workaholic. I love my job but am seriously thinking about speaking with my boss about cutting back on the hours. Acutally to be honest I'm pretty sure that not cutting back isn't going to be an option much longer. I hate to admit this and really hate the thought that anyone would think that I'm being a big baby but it is getting so hard and I am feeling so bad lately that it makes me wonder if my husband is right. Anyway - just wanted to say how glad I was to see this forum.
What do you mean your husband has been bugging you to file?
Diagnosed with Lupus - 22 June, 2010
If you are like me the time will come that you will KNOW that it is time. It is a difficult decision especially if you enjoy your work. I have had to cut back in many ways. I did realize it was time when I was getting very sick after trying to do things that I was not able to do anymore. I finally decided it was time not to push myself so hard anymore cut back where I could to save energy for a few of the things i love the most. Let others carry more of the load if that is possible so you can keep on doing what you want. Best wishes for a happy future. Billie
Linda, she means for disability or FMLA. It's a pain to get here in the states. Most people who actually get approved for it have tried for a very long time to get it.
Billie, I went from work-a-holic, to calling in frequently, to short term disability, to laid-off with no promise of ever getting my job back. I don't regret it. I'd rather spend days that I feel decent doing something enjoyable. My husband was the one who pressed for me to go out on my second term of disability.. he said he couldnt watch me get sicker any longer. even if it meant losing that income and moving on in to the "poor house" as we southerners call it.
Random thought... Remember that movie, "Rudy"? He had the desire and the heart to play football, but he just didn't measure up physically.. hmmm.. I guess I'm a Rudy.
It was hell for me deciding to stop working, and go on disability. I worked for years to build my business, and I was finally doing my dream job. I also had 18 employees who depended on me for a job, many of whom were friends and former college classmates, all of whom I had an abiding respect for. I worked in the field of smallarms design, and was either in the shop around machinery, or out at a test range around weapons and ordinance, and my ever increasing brain-fog was causing me to make simple, and dangerous mistakes. That was really the deal breaker in my mind. I considered taking a more "hands-off" role, as some business owners do when the business is finally sustaining itself, and you have good managers that you trust, but that's just not me. I'm not a passive hands-off kind of person, even when I'm sick.
I finally decided about 6 months into my SLE diagnosis to apply for Social Security Disability, and close the shop. Fortunately, two things happened- I was approved with no real difficulty, and my friends, my employees, managed to get together, and a few of them pooled funds, and got loans, and bought the business. Not a single person, other than myself, was without a job. That was back in 2004, and looking back, it was the right decision. I was getting bad. I was on the phone one day with the Deputy Director of DOD procurement, and suddenly lost my entire train of thought. I forgot who I was talking to, and what I was talking about. Talk about embarassing. The same thing happened again in a rather important conference call with U.S. Army Brass in Afghanistan one day. I made excuses, like the fact that I worked 50-60 hours a week usually, or that my allergy meds made me loopy, but I wasn't really fooling anyone. Everyone knew that I didn't consider those 50 to 60 odd hours a week as work really. I was doing what I loved (and getting paid to do it), and I wasn't really tired or stressed from those kind of hours, not before Lupus anyway.
If you have to stop working, either temporarily, or permanently, there is nothing, absolutlely NOTHING a person with Lupus, or a person with any other chronic incurable autoimmune disorder for that matter, has to be ashamed of, or feel guilty about. For those who may not know, I was also diagnosed with MS in 2008, so I will most likely be on full disability for the rest of my life, and I'm OK with that. My father put it to me simply-You have two very real diseases, you are unemployable, and disability is meant for people like you, and others like you, so don't be guilty. You'd have to hear it from his mouth to understand how much weight his words have. Just imagine Robert DeNiro giving you that serious squinted eye look with a finger pointing at your face in his New York accent telling you "Ey, don't be guilty, right? Just don't do it!"
Anyway everyone, he's right, don't be guilty!
Last edited by rob; 09-01-2010 at 10:26 AM.
I agree with what Rob and others have been saying here.
I was a high school Latin teacher, and I LOVED my job. I was always teaching, planning, grading, etc, but I was a workaholic about it and didn't mind a bit.
Over the course of three years, I went from occasionally needing my cane to depending on a rollator to get around. My overall health was really getting bad, but I still kept hanging on - for the kids. Finally, my health and a move for my hubby's job came together to convince me that it was time.
Listen to what your body is telling you, and don't feel guilty about it. There are always new adventures out there.
Another workaholic here... This year has especially been trying. I have had the same employer for well over a decade and I have tried so hard to keep working this year. I have some good days but I am having more bad days than good days. I have been working so hard to keep my job over the last few years since my cardiac bypass that I have failed miserably at managing very important but basic aspects of my life and have put my spouse and myself on a mental rollercoaster while uncertainty of the future rises up in my mind. I am 30 years old. I am blessed to have a supportive employer who gave me room to come to the conclusion on my own. It really hurts because the people I work with are very good people and they have become my second family over the years. I find it very difficult emotionally to deal with this. I feel guilty, my self worth has plummeted this year, I feel isolated (actually, I've been isolating myself so thats my own damn fault.) Grieving is an understatement.
I love my job, I love helping people. I love my spouse and my son. I feel like everything I do I do for them, but in doing that I have not been listening to my own body.
32 YO Wife, Mother and Advocate
Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN
You can find me on facebook at www.facebook.com/sororenotis
Please tell me you are from here and who you are if you add me there.
I work full time and Leader for International Autoimmune Arthritis Movement
I can raise my hand as another workaholic. I was a perfect "company girl". I worked through lunch but when filling in my electronic time sheet right before payday it showed a full hour for lunch. I worked late and, once again, never charged it because "the company" was having a rough time right now. I am old school and I was loyal. As I became more ill and more ill it became harder to work. I worked with attorney's and my memory issues were getting harder to hide. I did everything I could to think about the position of "the company" and what my leaving would do to them. My decision was made for me when I had a major seizure at work on April 7th of last year. The doctors would not allow me to return to work after that.
Filing for disability was a tough decision for me as well. I too went back and forth between filing it and not filing it for several months. I finally had someone talk to me as Robs dad did him and filed in July of last year. I am still waiting and it looks like it will be another year. Often times the process isn't quick so be prepared for that. If you have short term and long term disability from your company let me know. Boy do I have some information about how well that goes! If I only would have listened to an attorney friend early on but I believed (wrongly) that my company was as loyal to me as I was to them.
As a side note... Welcome to WHL! We are glad that you found us
Success is not final, failure is not fatal: it is the courage to continue that counts.
Hey girlin Dallas!
Wow, I'm glad to see that you were here yesterday! I've missed you! I'm sorry to see that you've been having a hard time since the last time you were at WHL.
I hope that you keep coming back - we're always here if you need to vent - you know that.
Lots of Hugs,