Just a little irritable

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Regular Member

Date Joined Feb 2009
Total Posts : 28
   Posted 3/10/2009 1:10 PM (GMT -6)   
Okay, I was really just wanting to vent a little bit.  I've been a little tired today, not so bad as it usually is when I get tired and don't even feel moving at all.  And I'm just trying to get through my work day so I can get home and rest. 
I've been down the past few days.  I was on break at work and walked outside for about 20 minutes on break and my rash started to come out on my face.  The woman I work with then started to ask me some questions about lupus, just trying to get an idea of how it works.  I tried to explain to her what it is and how i'm so sensitive to the sun.  Most of the time it doesn't bother me too much when someone asks about it.  But after a while it does get to you.  Its just gotten me a little depressed.  I was just dx in Sept. 2008 and it just got me thinking about how everyone I know used to asked me how I was doing it was just a normal question, mostly out of politeness.  But now since I've been dx and everyone knows that I have lupus when they ask its more sympathetic.  I know they care and really want to know because they worry but I just feel like they just feel sorry for me.  Their facial expressions says it all.  I just want to be talked to like a normal, well person. 
I want to talk to my mom about my how I feel but also don't want to because I don't want her to get all worried, then she's gonna ask me ton of questions.  And she don't really understand what we go through w/this.  I don't want people to feel sorry for me.  If i'm somewhere and someone asks about me and they say, "oh thats so and so, she has lupus".  I'm still the same person i've always been.  Now I just have to take better care of myself. 
Maybe i'm sounding a little rude and inconsiderate right now but its just getting to me and I don't really have anyone else to really really talk to that could possibly understand.  My friend will listen to me and act like she understands but I know she doesn't truly get it.  So I thought I would share with all of you great people.  I read a lot of the forums on here and it helps me soo much.  To finally have some people you can connect with on a different level.
Well thanks for listening!  =)

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 3/10/2009 1:54 PM (GMT -6)   
Hi redneckwmn,

It's so very hard having a chronic illness and it can feel very isolating because not a lot of people understand what you're going through. You said that you were dxed in 08, but you didn't mention how long you have been sick.

I don't know your mom, or how she would react, but if my 21 year old daughter had lupus I would hope she could come to me and talk to me. Just because she may worry doesn't mean she won't want to help you. We moms worry whether our kids are sick or not. :)

I strongly urge you to use sunscreen every day and to wear a hat when you go outdoors. If you feel peole stare at you for wearing a hat, believe me, that's better than getting a rash, or worse, getting sicker than you already are. The sun is nothing to scoff at. There are lots of good moisturizers that have a high spf.

This is a good place to come for support and I'm glad you're here.

SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Feb 2009
Total Posts : 28
   Posted 3/10/2009 2:08 PM (GMT -6)   
Thx for the reply. I am actually very close to my mom. We are like best friends. Its just that not having someone who truly understands can get tiring when trying to explain how you are feeling.

Well lets see, for a little background info. I will be 25 years old in April. When I was 19 is when things started to change. It started with my eyebrows thinning and eventually falling out and most of my eyelashes a little while after that. I had went to my Doctor and he didn't really know what the cause was...stress?? He referred me to a dermotologist. So I went there and didn't get any answers at all except that it happens sometime and also mentioned stress and that more than likely they will grow back. Which over time they eventually did. But it put a damper on my self-esteem. I also had problems with the hair on my head falling out. I have really really thick hair. It didnt' fall out to where it was noticable, I never had and bald spots or anything. But my hair would come out by the handfulls when washing my hair.

about the end of 07 and beginning of 08 I started these migraines and went to my doctor and prescribed me something for it. then I started to get tired...sooo tired that I couldn't drive home from my parents house. I would have to just lay down and sleep and would sleep for at least 3 or 5 hours at a time. I couldn't understand why I was so tired all the time. My dad was starting to get a little worried after a while and I kept getting tired like I was. Then in April last year I was at a festival our town has every year. Out in the sun. I just thought I had been out to long and got a little sunburned on my face and my chest. Well the sunburn never went away. It got worse and looked more like hives. My doctor thought I was just having an allergic reaction to something and had me on prednisone. It would clear up but once my meds were done it would come back again. We tried for 3 months to figure out what it was and he recommended me to a different dermotologist. She knew almost certain that it was lupus and did a biopsy and sure enough thats what it was.

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 3/10/2009 2:29 PM (GMT -6)   
Hi redneckwmn,

I too know just how frustrating this disease can be! I was diagnosed in 1997, in the beginning I shared my story with others if asked, to be honest that got more stressful than it was worth (for me anyway). While people seemed to be interested, I soon learned they really were more nosey then truly concerned about my health. In 1999, I started a new job, at that time I decided I was going to keep my lupus to myself, I would only share information if I had too, as far as work was concerned at that time I was functioning perfectly well and did not want to be identified or judged by my condition any longer. I still work for that company and up until December of 2007 there were only a hand full of individuals I had shared my secret with, in Dec 2007 I had to advise my supervisor as well because my disease became more active. She was wonderful though, I was a supervisor so I asked that she not share my info as I did not want to worry my employees. Long story short, in Sept 2008 I had to go out on short term disability and just have been approved for Social Security Disability. I still elect not to share my illness with others that are not close to me because most people simply don't understand. Many people close to me truly don't understand how I feel on a day to day basis. I have shared the "spoon theory" with my close family and friends and that has helped them some. You might give a copy to your co-workers and your family, perhaps this will help them relate to what your day to day is like. http://www.butyoudontlooksick.com/the_spoon_theory/

Just remember, you are not obligated to share your information with others, if it frustrates you or brings you down , don't. I lived a normal life for many years with lupus, don't let lupus define your life or become the center of your world. Being reminded of your condition everyday can do that, so be careful.


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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