Hello - Lupus patient new to forum

Hello everyone,

Thank you for all of the informative postings --- I've learned a lot.

Seven years ago I was diagnosed with Raynaud's ... one year later I had a pericardial effusion (fluid removed from around my heart), my Rhumotologist determined I had progressed to Lupus.  I do not know anyone else who has this disease, which is why I feel alone & uneducated.  I've done my best to read books to educate myself, but I'm sure everyone would agree that's not the same as talking with someone. 

 

Thus far, I have been able to 'hide' my disease well - despite flare-ups.  Most recently, however, the disease has affected my job.  My employer has been anything but cooperative as far as making 'reasonable accommodations.'  Therefore, I've gone into a more severe flare-up & have been taken off work for 3 months.  My dilemma is that my employer has assured me I will not have a job to come back to.  I have a hard time trying not to think about the consequences (i.e., medical insurance, prescriptions, income, etc.).  I am an accountant which can be a demanding job during month end.  Does anyone have any suggestions for me?  I'm unsure as to whether I should take on a part-time accounting position or make a career change to something less stressful. 

 

Has anyone dealt with a wrongful termination and/or discrimination case?  I'm thinking I might qualify for that.

 

Thanks in advance,

Jenny

 

Hi Jenny, Welcome to the group! I'm sorry you have had to find your way here but I have to tell you it sounds like you are in the right place. I recently found out I don't have lupus but some other weird A?I disease. They let me stick around anyway lol. I was wondering if you have considered appling for disability? It can take a long time but you might need to think about it. Many people here have had to resort to that. Including myself. The stress of the job and the fatique can sometimes make it impossible to work. Or you say you are an accountant. Is it possible to work at home and be your own boss? I don't know I'm just trying to throw some things out there. As Rosie said there is a thread here about family leave perhaps that is somthing you could use. Perhaps your doctor could assist you in where to go from here. My doctor told me 3 years ago that he would help me get disability. I refused it. I just started getting it a few months ago. I really wish I had listened to him back than.

anyway I just wanted to welcome you and I hope to get to know you better

hugs

carol

If you live in a Community Property state, an annulment may not get you what you are expecting... I looked into filing taxes as "married filing separately" but because I live in a community property state, I would gain no tax advantage filing separately from my hubby. I think the same thing applies to SSI and other assistance programs too - contact the nearest Social Security Office. They can tell you more about this.

As for the "pre-existing illness clause" in insurance, yes it is true that going from one policy to another usually helps to circumvent this. However, individual or self-pay plans may not have to follow the rules - you should contact your state's Insurance Commissioner's office to find out what the rules are.

It is illegal for an employer to fire you strictly because you have an illness - the law is the American's with Disabilities Act and it includes things like chronic illnesses in addition to physical disabilities. A lawyer would be the best source of information about this if you want to persue things further. But you will need proof that the company is trying to oust you - your telling the judge about what your boss told you may not be proof enough. A letter, email, or recorded conversation that clearly indicates the company's desire to fire you specifically because of your illness would be the type of proof you would need.

I hope this helps. Take care,

What ended up happening with this? I can't believe an employer would be so dumb to do this during lupus awareness month. It is illegal -- I asked my hubby who has a legal background.

Jenny,
After my first year of treatment I changed jobs. They actually had a pre-existing illness clause. The would not cover anything to do with my kidneys for 1 year. (this was prior to my diagnosis of lupus) So be careful! SSDI is not supposed to be based on your income. If have worked and paid in SS taxes and you are deemed disabled then you are eligible. (I just got approved) It is not a welfare program it is an entitlement because you have paid it in. You are allowed to make up to a certain amount of money per month while receiving SSDI, if i'm not mistaken. If you are considering this route I will advise you, it is a long drawn out process. It took me one year almost to the day and some here have been battling longer. My congressman's office and senator helped me tremendously. Sorry you are dealing with so much. Take care, Judi

When I first started the ssdi process I was still able to work a little that was back in 2003 and yes it can be a very long and winding road. In 2004 I was no longer able to work at all. I have been through the appeals process a few times and am now awaiting the appeals court and should know something between now and Feb. 2008. I have lawyer too. But Bill is right a lawyer is very helpful in that situation for the ssi and fmla. I very lucky like you I have a wonderful supporting Hubby that has helped me through this whole ordeal. I don't know what I would've done without him. As far as keeping my mind off of my diseases I have a four year old to do that and I get out of the house by shooting on a pool league(not very good at it but I get to spend time with my dad) ;)


GL to you,
Stacey