Situation has me stressed: Disability vs. Employment

General
1

Hello everyone!

I am a 28 year old mother of 2. I was diagnosed almost 9 years ago with lupus, anemia, and mixed connective tissue disorderwhile in college. I have been working since graduation in 2006 but have had to quit 3 different types due to lupus flares and complications. After having my son last year, I had to have 9 platlet and blood transfusions and was diagnosed with low blood platlets and white blood cells. This continues today along with lupus, fibromyalgia, thyroid and liver inflammation.

I recently returned to work in June after having open heart surgery linked to lupus. Now, I am one again flaring–fatigue, joint pain, recent diagnosis of fibromyalgia. I am torn-- do I keep putting myself through this or do I stop and file for disability. I have wrecked my brain. My husband has left it up to me as to what I want to do. Every day I force myself to work and I am so tired mentally, physically, and emotionally.

Please offer any insight I’m just so tired and I feel lost.

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I know this sounds wierd but with blood tests for Lupus is one thing-what about going to your OBGYN.. Dr. and ask for hormone tests-I just think(personally) hormones can have so much to do with auto-immune. other factors and sicknesses growing up also are involved. also "alternative medicine" doctor -someone that has worked well with someone you know can possibly help you with testing and further strengthening of your organs. just a thought, Lupus hater.

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Thanks so much. I will look into it

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It sounds like you should be considered disabled. You owe it to your body. you know about what the stress does to you.

Feel better

Cindy

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I struggle with the issues of anemia, severe Lupus nephritis and hashimotos ( thyroid). I quit my high stressed corporate credit union job 7mos after turning 40 to open a small family business that is extremely flexible to my schedule and health. But, find myself still struggling. Are you currently working full time? Scale back to part time to see if that makes any difference for you. If not then you should consider disability. I think part of the struggle involves having the desire and drive to work but not the energy physically, emotionally and mentally. Make sure you have a good support system in place for you and your children. Friends and or family that will love and support you and your family is essential!!! I did not and it caused more stress.
Blessings,
Donna

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I am struggling with the same sorts of issues right now. I have worked with the same agency for 16+ years now and was recently demoted from a supervisory position, back to a field position, which I feel was in part based on my company feeling like my illnesses make me a liability. I had spoken with my doctors about ADA accommodations and they felt as though since my job wasn't physical in nature, there was no accommodation they could recommend for me. I shared that with my employer and my direct supervisor decided to make a referral to our EEO division, but I didn't receive a response from them until the day after my demotion took effect. My job is highly stressful and my doctors have warned me about how stress contributes to my illnesses, but I struggle with the idea of being "disabled" . I have gone to my disability retirement consultant and have filled out the paperwork on three separate occasions, but have never followed through with it, because of the cut in income I would be facing. It's a tough call, but you have those days, where you just know, something's gotta give. Best of luck to you and hope you are well.

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You sound like your body is begging you for a break. Take one and concentrate on pacing yourself, rest and your family. I left a 20 year career in 2011 and I am thankful I did as it gets to be so wearing and the guilt over not being able toPerform was causing major stress good luck and the Disability will give you possibilities for your health and future. Only my opinion and I hope you find balance on this journey.

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My quality of life improved after I left my work. I miss my career and loved it very much,but was barely making it through the day the last year,and returning home unable to do anything with or for my family and friends,needing a nap just to have the strength to stand up and cook dinner. Being a mom to a young child is demanding unto itself.Taking care of your health is essential to taking care of everyone else.Perhaps a respite to focus on that,and then recreate a career path when you are more stable.My health has continued to go down hill,but my spirit is much more at peace,and it means a lot to have the time and energy to devote to my loved ones. The loss of income and recognition in the larger world is an adjustment,but for me it has been the right choice.

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I, like you and others here, are in the same boat. I changed from a high stress career to massage therapist. As a massage therapist, I was usually hired as an independant contractor. I am not certain I can qualiy! Your situation sounds serious. You should apply for disabilty and get yourself in to a solid remission- if there is such a thing.

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Thank you guys for your responses. I’m at work now feeling horrible and on the verge of tears. I do foster care social work… Something I love but very, very stressful. I had to miss yesterday because the inflammation was so high yesterday I couldn’t open my mouth. I just want to be healthy and normal…whatever that means. I had a disability claim pending but I pushed myself to go back to work to be in the same situation again.

Can anybody say what they did about insurance while waiting on disability? I’m really trying to abound going bankrupt but I see it looming in the distance if I stop working.

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Hi- I just read your question- and while I do not have children, I can really empathize with what you are going through. I am turnign twenty five next month, and am five credits short of graduating from university (it has taken me seven years to be even close to graduating.) I was supposed to graduate this year, but had to leave school and work because I was diagnosed. I had spent years working on a career- I had a charity that I had started- and the future of something else, and got so sick I couldn't function at all, and the thought of leaving it behind was so painful to me... I tried to keep going about my life, after my diagnosis, as though I was not sick, and made myself much much worse....finally taking the step back that I needed....it is still something I struggle with everyday, and I am terrified that I will never be able to work, or have the life that I dreamed of, at such a young age... but I think that taking the step back - has truly helped me, and is teaching me to look into other dreams and opportunities that I turned my back on because I was so focused on a career at the time that was 'go go go'... now I am exploring other things that fit with my life and pace now, which is 'built around me' and my illness. It is impossibly hard, accepting being disabled- and ofcourse, one/ we/ you/ don't have to choose to call it that. I didn't want to say it for a long time... as I said, I went about my life trying to pretend I wasn't... I'd refuse to use my cane, and be out in public struggling to walk, almost fainting, and making myself much worse. I didn't get a handicap sticker, Ididn't do lots of things, and then had a moment one day, where I realized that I needed the help- and that If i gave in, I would be able to do more things. It isn't about admitting defeat, it is about accepting ways to bring help into your life- learning to ask for help. Having a sticker, for example, gets me closer, so that I can save that energy and walk around the store. Having a cane, allows me to keep more energy so that I am not finished by a five minute walk (although, god knows, even with a cane, some days I am.) Nobody is going to fight for your accomodations EXCEPT FOR YOU.... this is important to realize... and when you need that extra help, you need to be able to say, I need the help, and I'm going to stand up for myself and get it. Being / admitting you are disabled doesn't mean your life is over- it means you are strong enough to accept help, and fight for it, I think.
Just my take. Anyway, it is good to know there are other people out there going through this too. I send my best to you. xo

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Beth,

I am a social worker, too. Very stressful! I just returned to field work, after six years as a supervisor. My docs think I might have reduced stress, which will help control my symptoms, but I think I may just be buying myself some time, before I really do have to take disability retirement. I wish I had answers for you. :-(

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My doctor took me out yesterday indefinitely. She has found primary binary cirrhosis now as well. I’m just praying for the best everyone for responding everyone. Does anyone know how much you can make while applying for social security disability. That is what I have decided to do.

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Excuse me primary biliary cirrhosis

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Here is what i recommend you do. Something different than others have said. I ask your doctor to sign you off on medical leave for 8 or 9 months. You will go on state disability so you still have your job plus you will get paid!

Now you have the time to really think this through and find the answers to do the right thing for you, your husband and your child. Because it will affect all them very much no matter what you chose. Plus, this time will enable you to see how tight money will be and if you can live okay on just your husband's salary.

You can consider other options while off such as working part time or other ways to limit your hours...no overtime. You can possibly work from home pt and in the office pt. You have the time to think of options instead of rushing into something you might not really want. You are just exhausted and need to rest. Who knows you might feel so much better you will want to go back to work!

There are books authored by people with lupus discussing this topic so read a few of those to see if you missed something. I talk to all your doctors how they feel about it. Family and friends too! For this big of a question i also suggest seeing a therapist who can get to know you and make sure you are not missing some huge part or question.

I do really think that your husband has to say how he feels....it should not be up to you alone. Down the road you do not want him resenting you ...if he felt he never got to say how he felt or felt you did the wrong thing. Then there is your child too. I know how much it scares them when their parent is sick and cannot dress or play with them.

If your doctor signs you off on state disability it will truly give you time to really get the right answers that only you and those involved can answer.

It also give you time to think of how it is going to affect you....that is the real million dollar question...will your self esteem go down hill? Therapist should be able to really make sure you look at this well by all sides.

well...that is what i would do....if your doctor will go through with it..but if they are willing to say they think you should be on SSDI ..i cannot imagine why state would not be a option for them. So good luck...find your answers!!

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I have never heard of state disability where do u go to apply for that? I’m sorry please offer insight on that.

Thank you so much for your all your direction. I really appreciate it. I. Trying now for short term disability through a policy I had but m exploring all options.

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Why not both my caseworker told me I could work and make up to 800.00 per month and not effect my benefits

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Ihave never heard of state disability either . I didn; think you could get disabiity AND make 800 a month either. WOW

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Okay!,Slow Down take a moment-Breathe!! Now there are 3 main characters in this picture , 2 that rely on the Head character , which is YOU! Pull yourself together!!! I do understand and hear every word that you are expressing, and yes I have been down some what this road, being a anemic with low blood pressure over bleeding monthly,(had hystromye)misspelled-smile. , I never wanted to give blood or receive blood , religion , but anyway, it was no choice for me back in april 2013, my Grown kids talked with my doctor, gyn, and my lupus doctor and it was a matter of Life and death at that moment , those things had to happen ,getting blood and iron deposits ,mineral subustacnes -man there were needles everywhere, when I woke up in my hospital room,I didn’t know what had happened -I blackedout with my son ,and was rushed to the hospital were my kids , spoke with all doctors and agreed with them to do this emergency surgery!!! Even through they knew how i felt about the blood isues ,they told my oldest grand ,which is a girl , that I might die , they said , she told them ,not to come home without me! So that’s why am thankful that my kids did agree with the doctors ! So that I would be able to come home and explain to my grand , how there are things in life it is what it is and you have to respect people wishes! Now she says , grandma we are Living in the now moment!! Enjoying where we are with so much laughter, smiles and hugs!!?,… Now enjoy the moment!, you know that you will not be able to hold a job for any length of time, why pretend ?, it only make things worst for yourself , and think about the other persons who can’t do nothing at this moment of their life , they rely on you !!! Do file for disability , try not to work may long hours through the week or weekends (they are more stressful), file for unemployment also call the lupus foundation in Los Angeles , and ask them some questions and make sure that you visit your doctor ,or where ever you go to be treated for your Lupus , make sure that all paperwork is in order ! Ask the doctor for help , do a job evelation worksheet , mine did, it helps with the social security process, it show how you will or will not be able to do they duty of your job during your work shift ,etc…Hold on ! Keep fighting , God is with us/you! I hope this help take care…Beverly l.

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Oh! By the way it didn’t let me edit , my grand is now 8, she was 7 at that time when this happened , my point is Look how smart kids are and how they think!! I love , God be with you and yours…Beverly L.