View Full Version : Doctor's Appointments, Disability, etc.
10-15-2007, 09:17 AM
Hi all! It has been awhile since I've posted to the general group, but I could use some good thoughts. If you stop by this post please send me good vibes, prayers, whatever your positive thoughts are. I have two doctors appointments today with my GP and my Rheumatologist. I am dreading them a bit. I am not really getting "better." That is to say, I'm not in excruciating pain, but I'm having a hard time keeping my 40 hour a week job. I can be fine for an entire week, but that means nothing but rest on the weekend and a likely 2-4 day absence the following week. It is getting really hard to keep my spirits up. I worked so hard to get my Master's degree in an area I love, yet I'm not able to enjoy the work now because it is really hit or miss. My husband and I share very little laughter or fun because I'm always reserving energy to make it to work. This is really for the birds. We spent a lot of time talking about quality of life this weekend and I just want to ask the right questions today when I see my doctors. Disability isn't my first choice, but if it means that I have the energy to enjoy my life with my husband instead of spending all of my energy making it through a work week, it might be worth it? (I used to be so decisive on issues this important)
Anyway, I've rambled on. The take home message is, I need your support. Thoughts? Ideas? Stories of your own working experiences?
Thanks to everyone who responds or just stops by and gives me the good vibe thing :)
I'll be back later.
10-15-2007, 09:44 AM
Oh my thoughts are with you!
Have you talked with your Human Resource Department? Talk with them about ADA (Americans with Disabilities Act), point them to JAN (Job Accomodations Network) http://www.jan.wvu.edu/media/lupu.htm
Have you considered working part time? Adjusting your schedule to allow you the daily rest breaks you need? Possibly a nap in the middle of the day would allow you to 'recharge' enough to make it through the day/week with enough left over for quality of life in the evenings and weekends?
You're in my thoughts - keep us posted as you go through the doctor visits and discuss options with them.
10-15-2007, 04:40 PM
Hi Sweet Lady,
We ALL have stood in your shoes, and sometimes it feels like your socks are slipping down past your heel doesn't it (crazy analogy, I know).....but that's how I have felt about life at times. It would seem like every time I pulled myself up enough to stay afloat, I would be right back to pulling myself up and again, and again, etc.
First of all, it is very important that you allow yourself to have "these kind of days"....we all have 'em, and they suck...that's all there is to it. However, speaking from an incredible near-death situation that I endured a year ago (stroke, heart attack, kidney failure) - I know how desperate you can feel. I cried when you were explaining about your education and not feeling like you can enjoy your quality of life. I was there - I can tell you that in my past; I made my job my life and everything came afterwards - that is until this "life changing" event took place. Sometimes I think God has HIS own special way of dealing with us when we're not willing to listen when there is time for a choice. I will never forget the day when my employer said to me "this is NOT your life" - "this is what you do to enable yourself to ENJOY YOUR LIFE" - "that's all this is".....priorities can and should be set with your health, your family, your peace of mind in the forefront of anything you do.
I nearly lost my life, and I did loose my family in the midst of it all. It was a fight I tried to take on by myself because I thought it would be too great of an emotional burden for others - and in doing so, everyone spread out and all became lost in the mess. If my loss can be your gain, then this will have all been worth it. I would say to you my friend; gather your friends and family near you - ask for help. Everyone needs to be needed - believe it or not, when you allow others to help you with housework, shopping, etc. - it allows them to be blessed in other ways down the road.
Laugh till you cry, hold on to your sweetheart and make deposits in your memory bank of life. Negotiating through life is not easy, but it is necessary. Negotiate your job so that you can be the wife, sister, daughter, etc. that you want to be. You're a smart girl with a lot of good choices at hand right now - fight for yourself right now. You owe to yourself and to your family. Family comes first above everything else in your work environment.
Make sure that you are meeting your own physical, emotional, and psychological needs - counselling is caring for yourself. Lupus is perhaps one of the most unpredictable diseases and defies any kind of understanding. Learning to live day by day is not easy; it never was meant to be - but living it at peace with knowing that you are do so with all the help you can have available to you; makes life with lupus so much easier. Let your loved ones in and let them ALL help you. When I gave up, God sent me angels that took over when I couldn't tend to myself and learned that all I had in life was nothing compared to all that I needed.
You are in my prayers and my thoughts. Please keep us posted and let us know how you're doing. There are so many wonderful, caring, and resourceful people here.....you will be blessed by the knowledge and caring of everyone here. I know Saysusie will have TONS of wisdom to share with you.
Be kind to yourself, be there for your family....let friends become your helpers. Let love be the deciding factor.....in every part of your life.
Much love to you,
10-16-2007, 11:19 AM
Thank you all for your support.
I cried last night when I read your post. Everything you say is so true. I really felt very strong when I came to work today and have sputtered out...
Family is the most important and though my GP couldn't offer much help, my new rheumatologist said my husband and I have to make a decision. She can make me much more comfortable/give me a better quality of life, but the medications I would need to take cannot be taken during pregnancy. She suggested that we have to make a decision. Either we get pregnant now and worry about the quality of life issues post-breast feeding, or we focus on quality of life now and delay pregnancy, but we will have to go off those medications then and I will likely feel the same as I do now. I know this is a lot of personal information to be sharing, but it gave me such hope.
Today I have sputtered because I feel that my supervisor is harrassing me because of my disability. She has singled me out now a couple of times and I've only been here a bit. It is very upsetting and while I'm documenting her actions, it doesn't make me feel much better. It is just very very uncomfortable and I don't know quite how to address it because I know it will make no difference, but I'm not typically one who does not stand up for themselves so I'm deflated.
Anyway, sorry to spew all of that on you guys. I do think family is the first priority, so my husband and I really have to make this decision. thank you again (all of you) for your support!