View Full Version : How to Explain

03-17-2005, 11:54 PM
For the first time in weeks I feel as if I have finally found someone who understands what I have been also feeling. I have felt so isolated. I am so glad I came across this website, and was able to read your postings. I haven't really been able to find the words to talk about how I have been feeling, and so many of you said it for me.

I have been dealing with a flare the past few months and am really burnt out with it. Last week I had six mouth tumors removed and have two growing in my throat, have had pnemonia, am on several new medications, and my kidney is acting up again. The problem is, I haven't been honest with people about my lupus, and continue to try to fake it at work and with people in general. Now people don't seem to really understand, and I don't know how to explain my falling sales to my boss and co-workers, or the fact that I just can't make it through the week without becoming sick. I haven't looked 'really' sick since working at this company, and continue to watch my symptoms worsen as I don't take care of my health, but am worried about not having this job. I feel stuck in a lie.

I have always been somewhat ambitious and can ignore lots of pain, but I am really tired of feeling like I am in a constant war with the rest of the world. I feel as if I have backed myself into a corner where if I actually tell the truth about the shape I am in...I don't really know what would happen, but I am afraid of what it might be, especially because I would have to start with telling myself the truth.

I just don't know what I am supposed to do in life now. My plans have to change, because I just can't go on like this. I feel trapped and tired all the time. I am not one for talking like this, but it is really how I feel.

I really want to thank you for this site, and even though at this very moment I don't feel too much better, it has helped to speak about it. Thanks, Vanessa

03-19-2005, 11:58 AM
Hi Vanessa;
Do not worry about about talking about your feelings or your fears. That is what we are here for.
About your job...did you know that Lupus is protected under the American's With Disabilities Act (ADA)? Therefore, you employer must offer you accommodations.
Contact the Job Accommodation Network to learn more about the ADA, how it applies to your work situation and what is required of our employer to be in compliance with the law.
The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor, Office of Disability Employment Policy, and provides information about job accommodations, the Americans with Disabilities Act (ADA), and the employability of people with disabilities. You can call the JAN via toll free numbers and speak to a counselor about your situation. Job Accommodation Network
800-526-7234 (V/TTY)

If you are having difficulty paying for medications to treat your lupus, there may be assistance available through the Pharmaceutical Researchers and Manufacturers Association (PhRMA). PhRMA sponsors a program that provides prescription medications free to physicians whose patients might not otherwise have access to necessary medications. The Directory of Prescription Drug Patient Assistance Programs lists member companies of PhRMA that participate, medications covered, and eligibility criteria. If you meet the criteria, the pharmaceutical company will send the medication to your doctor, who will dispense it to you. Further information is available at the PhRMA web page: The Directory of Prescription Drug Patient Assistance Programs Consult your physician to determine if you are eligible to access any medications through this program.

Also, the Social Security Administration recognizes systemic lupus erythematosus as a potentially disabling illness and includes SLE in their listing of impairments. Ask your doctor if in his/her opinion you are disabled according to the definition used by the Social Security Administration.
Disability definition: the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.
There are many sources of support available, we are here to help you and will research them for you if you would like us to. I hope we can offer you help and support and information. Write to us and please stay in touch and let us know how you are doing.
I wish you Peace and Blessings

03-23-2005, 02:28 PM
We are all here for you. I found this website at a time when i couldnt express my feelings very well to others, or myself. Everyone here is so great and suportive. We are all going through this in one way or another, and I'm very glad that you found us. Hang in there, and vent as needed!

03-24-2005, 06:04 PM
Hi Vanessa,
I pop in here from time to time and find it a helpful site. I understand the struggling. I was a nurse for 33 years and was forced to take ill health retirement last year. A big step but what a relief. I struggle along and I do think the deterioration has slowed down a biyt although I am having hip problems now which are affecting my mobility.The stress certainly worsens the situation,
Look forward to talking.
I hasve msn and yahoo messenger if ever you want to chat feel free to add me.Links under post