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My Lupus Story
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misspequot posted:
I want to tell my Lupus story and my struggle to survive each day. I was diagnosed with Lupus in 2008, well 1st I was misdiagnosed with Lyme disease by 2 Doctors. Then fortunately with the help of the Lupus Foundation I was properly diagnosed after the 3rd Doctor said he "thought it was Lupus".

I have always been a very independent person. I moved myself( with no physical help) twice. Once to another state to start a new career and life and the second time to my 1st real apartment(a beautiful townhouse), Shortly after moving into my new townhouse and being diagnosed I was unable to walk for 3 months( an awful reaction to the medicine I was 1st given to treat the illness). I also gained 70 pounds due to the medicine(eventually lost it after 4yrs).

This is where my story really begins: After being out of work for 3 months...my job(a majored airline) encouraged me to get FMLA(Family Medical Leave). I had no problems in the beginning. I still tried my best to go to work after I was able to walk again, feet, legs, hands swollen and flying all over. During a flare up I would probably miss one or two trips a months, but since I was on my own I made sure I did my best to go work despite everything. What I didn't know and later was explained to me was that your FMLA days expire. My job was also counting the days I already had off....which caused my days to expire much faster. So if I called out sick for a 3 day trip on the 4th and had 6 days off after that trip ended until the next trip starts...that would count as 9 days out sick. My job was also taking those days out of my sick bank.

So less than a year after being diagnosed with Lupus my sick bank was exhausted. I didn't get paid anything during this time. I started forcing myself to go into work even when I was in the most excruciating pain...this usually back fired. By the time I finished a 3 or 4 day trip I was in so much pain and swollen...I would have to stay in bed for a week.

Then I started getting behind in my car payments, rent, bills, etc....eventually I lost everything. I only had $1,300 left in my car before it was paid off, which was repossessed and sold. When I lost my townhouse I put all my furniture in storage.....I eventually lost all of it. In totally I lost over $55,000. I tried to rent another apartment, but eventually couldn't afford it and was evicted. I never had problems paying my bills and now I couldn't even keep a roof over my head.

Presently, I am staying in a hotel with the most important possession that I was able to hold on to...my dogs. They have been the only ones that has been there for me unconditionally, love me, put a smile on my face when I am down and give me a reason to go on. Actually, one of my dogs saved my life when I was having a seizure in my sleep.

I was told I should seek assistants. Will that would mean I would have to stop working and get on disability or unemployment. I love my job and want to work.....so I was told that I should seek assistants with food. That was a fail too...I was told that even though I don't work that much I still made too much as a single person, since I didn't have any defendants. So again I started pushing myself to work through my flare ups. I need to work to live and stay sane.

I didn't think anything worst could happen, especially with all that has already happened. Well, My job started giving me a hard time about calling out. When my FMLA days get exhausted and I call out sick it counts as a regular sick call. I was told to try not to call out when my days expire and maybe this isn't the right job for me. "Try not to call out sick". Ok Lupus don't act up while my FMLA days are expired......like makes since. I was with my company for 8yrs before I was diagnosed with Lupus and had a clean work record. Now after being with the company for 14yrs ...."THIS IS NOT THE JOB FOR ME".

Now....just recently I was put on a "Termination Warning". So if I do anything wrong at work or if they feel I call out to much...I will be terminated. My job and my dogs are the last things that keep me wanting to fight and survive. This has made me so depressed. I have nothing anymore, I feel my independence is gone, my health and now maybe my career/job is in jeopardy. "When you're doing well, everyone is there. Once you get sick or fall into any type of misfortune people scatter like roaches."

I feel like I am being punished for coming down with a disease I didn't ask for. I never gave up. I have always been strong, but how many hits is someone suppose to take before they crack or just fade away. I am so alone and disillusioned I don't know what to do anymore. I don't want to leave my room anymore....I feel like what's the point.
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rckandahrdplace responded:
I rarely comment but your post got my attention.

Must say I've been there, done that. Due to the devastating effects of lupus I was unable to continue with my job, so I found a new less demanding job. Unfortunately I was evicted from apt. before I found the new job. I slept where I could (under a pine tree once and in the library or ER waiting room). Put my possessions in a storage unit but lost it (27 years of my life) when I couldn't pay on unit. With only the a few items I continued my job. I got to know every gas station with a wall mounted blow dryer so I could wash my clothes and hair to be presentable for work. No car so I walked to work and ended up with a blood blister on my foot the size of a walnut. OUCH! But I continued on keeping my eye on the ultimate goal, besides what else could I do.

It was hell and a lot worse than you would know but I made it through after having failed several times. Lupus is still trying to ruin my life but I will survive.

Having experienced that it was with extreme skepticism that I read your post.

You walked around with your dogs in tow? (You said you lost your car to repo man).

What do you do with your dogs when you are away for days at a time due to your job? Who feeds them? How can you afford to keep them if you can barely afford to feed yourself?

Have you considered a shelter instead of paying for motel room?

The money that you are paying for a motel room coupled with the fact that you are homeless should qualify you for help from Social Services.

There are organizations that can help you with services , food, transportation, shelter, etc. What state are you in? I can get the necessary information to you about these organizations in your state.

I'm sorry if I sound cold but I was burned by someone boohooing on the internet about needing help. Money is not necessarily the answer to your problems. There ARE answers and if you sincerely want help and not just monetary donations then post where you are from and I will help you in getting in touch with the appropriate services and organizations.

I've spent many years of my life between a rock and a hard place and can tell you from experience that a hand up is far better than a hand out. So.... the next step is up to you.
 
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misspequot replied to An_254276's response:
Really....that's your reply. It's called a smart phone. I was hospitalized for trying to kill myself. I have lost everything. I just wanted to tell my story and you ask how I have access to a computer. People like you us why I feel so hopeless. I'm so over everything. I just can't take it.
 
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misspequot replied to rckandahrdplace's response:
I never asked for help. I just wanted to share my story. I wish didn't. I was up for 24hrs trying to fight thoughts of trying to hurt myself again. I went to WebMD to look for help on that....when I saw the Lupus Discussion board. I thought I could tell my story. Talk to other Lupus survivors. Maybe get advice about how to handle my feelings, suggestions on how to handle my job situation. Boo hooing......this is what I get.

BTW...I want to keep my job,
 
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lisatru62 responded:
Lupus is a tough disease and can make it very hard to continue to work. While I know you love your job you might want to consider state disability. It generally is only for one year and you can use that year to get on medication to help heal.

I was diagnosed four years ago and it took about a year for the medication to kick in so I could feel somewhat normal again. While medication doesn't always work it does help. The horrible swelling and pain does get better or at least manageable. Most of my symptoms are under control most of the time but it did take sometime to figure out what combinations worked best.

It's probably best to go on disability, it pays okay so at least you won't starve and will have a roof over your head. It sounds like you need to be a bit selfish and have some "me" time. I would suggest you take the time off before the company fires you which will make you feel down. If you leave and go on state disability temporarily at least you can say it was your decision and have some semblance of control.

People who suffer from lupus feel as if their lives are spiraling out of control. We can never gauge a flare, how long it will last or how we will react. Please work on trying to get to a better placed.

Good Luck

Lisatru62
 
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lupylisa44 replied to An_254276's response:
This reply is totally inappropriate! We are here to support each other. We don't need anonymous trolls on this site! Please feel free to go away now!
With love, with patience and with faith, we'll make our way.
 
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lupylisa44 responded:
I am sorry you have been having such a rough time! I had to go on disability 12 years ago because I just couldn't handle working any more. Even if you don't want to go on disability, I highly recommend that you at least apply for it. The first time you apply for SSDI, you will most certainly get denied. If you apply again at another time, they will have a record of your first application and you may be more likely to get approved.There is no shame in being on disability, you have to take care of yourself first and foremost! You can always go back to work once you get your lupus under control.

Does your company offer short term disability or long term disability inyour benefits? When it comes time to renew your benefits, you might want to get both. If you have at least short term disability, you cannot be fired for taking a short term leave.

I hope things start to go your way soon! Hang in there and take care of you!!!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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lupylisa44 responded:
I just wanted to let you know that there are several really good lupus support groups on facebook too. This board has been really slow lately so if you need some immediate feedback you should look into them. A few of the groups are: Awareness Matter, Hot chicks with lupus, Molly's Fund, Lupus Warriors and several lupus foundation groups too

Lupylisa
With love, with patience and with faith, we'll make our way.


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