Hello - Lupus patient new to forum

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Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 10/15/2007 5:12 PM (GMT -7)   
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

 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2007 5:55 PM (GMT -7)   
Hi Jenny . . . welcome to the forum!

I'm so sorry you are having to deal with this disease PLUS an insensitive employer. If you check out the topics, there is a recent one titled FMLA. Peak in there and see if that might give you some help. It sounds easy to apply for and then your employer will see where he stands.

Its hard to say how long you'll deal with this difficult times. The fact that your doc has you taking 3 months off is pretty strong, but I would try to hang on to the job as long as possible to see how you feel later. . . or until you can find another job that would be less demanding. That insurance is really important now. It would be best if you could have another job lined up so that insurance goes right from one to the other. I have heard that it somehow avoids the "pre-existing condition" clause. Hopefully one of the others will know more about this.

I just wanted to welcome you to the forum and send you hot cup of tea!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/15/2007 9:50 PM (GMT -7)   

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


God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 10/16/2007 5:39 AM (GMT -7)   
Rosie & Carol,

Thanks so much for your responses - they were most helpful! :) Just to clarify ... I have applied for both FMLA and short-term disability through my employer. At this point, should I begin applying for SSD? I don't like the idea of not working as that helps take my mind off the disease. Is is it possible to get disability assistance while working part-time?

My husband is 100% supportive. The only 'bad' thing is he makes enough money to put us above assistance. We've contemplated getting an annulment for legality sake so I can get assistance. Does this seem crazy or unethical?

Thanks again girls,
Jenny

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/16/2007 6:32 AM (GMT -7)   
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,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/16/2007 3:02 PM (GMT -7)   
Jenny, I don't have much advice, I just wanted to welcome you. I'm really sorry that your employer is not beeing cooperative or understanding about your situation, especially since this is the first time your illness has affected your work. I really hope you can figure out something that works well for you.

Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Co-Moderator: Lupus and CFS Forums



kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 10/21/2007 4:09 PM (GMT -7)   
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.
Take care,
peachy
 
Diagnosed with lupus in May 2005
 
Daily Medications:
Prednisone, 5 mg
Imuran, 50mg 2x a day
Warfarin, 5 mg / day
Zoloft, 100 mg / day
Plaquanil, 200 mg 2x a day
Nexium, 20 mg / day
Tramadol, 50 mg 2x a day (as needed) and Tylenol
 
Supplements
1500mg calcium
2000 IU of Vitamin D
400mg magnesium
Centrum Silver (and I am 30!)


Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 10/22/2007 5:57 AM (GMT -7)   
Peachy,

I have applied for FMLA & short term disability through my employer --- waiting for approval. According to my employer, since I will be exceeding the 12-week leave allowed under FMLA they do not have to guarantee my job or even employment when I'm able to return to work - I'm still researching that one.

It is obvious that my health is not important to my boss, so I have decided that company is not the place for me. I'm ready to move on at this point. I'm looking for a less stressful job or even something part-time. Thank goodness I've got a great hubby who's 100% supportive during this trying time. :) At the same time I'm also seeking legal council about the situation ... I will keep you posted.

Thanks for your concern,
Jenny
I have Lupus ... Lupus doesn't have me. :)
 
Dx:  Raynaud's (2000) · Pericardial Effusion (2001) · Lupus (2001)
 
Rx:  Pletal 100 mg · Norvasc 5-10 mg (as needed) · Prednisone 5-10 mg (as needed) · Plaquenil 400 mg · Prozac 20 mg (for anxiety)
 
O-T-C meds:  Adult Aspril 325 mg · Acid Controller (Famotidine) 10 mg · Allergy Relief (Loratadine) 10 mg
 
Supplements:  DHEA 100 mg ·  Potassium 595 mg  


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/22/2007 2:53 PM (GMT -7)   
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

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 10/23/2007 8:52 AM (GMT -7)   
SSDI is not based on your income. If you are completely unable to work and expect to be out of work for at least 12 months then theoretically you qualify. The standards are eased as you get older but it can be challenging to qualify and usually takes several applications. It took me 3 tries and a lawyer and I was a quadriplegic and could not swallow when I first applied. Not sure what they thought I could do lying on my back in bed?????

I recommend finding a lawyer who specialized in SSDI. If they feel you can win they will take your case on contingency. If you lose it will cost you nothing. If you win they take 25% of your retroactive disability pay up to a max of $5300. That is federal law.

You should also contact your state about a discrimination situation. Laws vary widely from state to state but you might have a case.

Good luck,

Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Staceymommy
Regular Member


Date Joined Oct 2007
Total Posts : 24
   Posted 10/23/2007 11:33 AM (GMT -7)   
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
dx Aug 2001 SLE and Hughes, 2003 Chrondromalaysia patella, Hashimoto and IBS, 1995 Gerd and Osteo Arthritis, 2004 Migraines, Chronic Bronchitis, Sinus Tachycardia, 2006 Fibromyalgia

Married 9 1/2 years
Mom to 1 miracle boy born 11/10/02 (took 12 pregnancies)
Meds
Darvocet
Toradol
Prevacid
Toprol
Vistaril
Prednisone(during flares)
Albuterol Nebulizer

Supplements
One a day
Ho shou wu(helps with the infamation and break through pain)
peppermint and green teas
Primrose oil
chaste berry

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