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tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 4/7/2008 11:22 AM (GMT -7)   
Hi all I am in a bad way. I go to PCP tomorrow and can not wait. My skin Lupus is all over even on my face. I am so tired the other day I could not get out of bed.  I just made the bed and laid on it. Last night I had ice packs on myself I was a mess. I have open sores. I went to the ball game and people just stared at me . One women told her kids not to go near me I had aids. I went up to her and held her arm and told her it was Lupus and I did not like the fact that she said so loud like that. I told her I wanted an apology. I got one but it was not a nice one. After that I had a lady come up to me and High five me and said way to go sister lupie.That made me feel better. I just wanted to get this off my mind Thanks for being there.

Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/7/2008 11:51 AM (GMT -7)   
tink.. Sorry to here that your in a flare. People can be so rude, they don't take the time to ask or find out about lupus. When I was working I told a person that I had lupus she did the same thing. My face has the rash she kept asking me why I was so red. In the summer I get like that the bumps and sores. Hope you feel better soon!
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/7/2008 12:29 PM (GMT -7)   
(((( Denise )))) that is terrible, people can be so inconsiderate. I'm glad you stood up to her though, people like that need to be put in their place. I do hope you feel better soon! Take good care of yourself and get plenty of rest. Hugs and prayers to you.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


nsearch212
Regular Member


Date Joined Mar 2008
Total Posts : 72
   Posted 4/7/2008 1:02 PM (GMT -7)   

 

 

   ((Tink))

     The funny thing is I work for a retail pharmacy chain so if you were to think that people working there would be more forgiving or understanding you are sadly mistaken. With all of the knowledge the pharmacist have and the numerous people who are lupus patiens they still give me and another girl an extremely hard time about our disease. Every time either one of us calls off the consensus is the same "Oh they must have had another flare up" I actually had one of my co-workers come up to me and say "I wish I could us that excuse everytime I wanted some time off work." I explained to the co-worker that she had no understanding of my pain or my disease and to keep her opinions to herself. Every now and then you get someone who will say well one of my relatives has lupus and they aren't this sick!!!! Then I ask them well which type of lupus they had?? That usually shuts them up because all they know is that there is just one type pf lupus out there and it's the same for everyone!!! HA!! It's a very unforgiving world out there especially when you are sick...     

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/7/2008 1:47 PM (GMT -7)   
I hate it when ignorant people assume they know what is wrong with you and announce it to the world. The AIDS thing actually came up regarding me because I used to get pnemonia all the time, was extremely pale, and looked like death. No one noticed the rash on my face and no one could see the rashes my clothes covered but they assumed anyone who got pnemonia that much, looked as pale as I did, and generally looked extremely ill had to have AIDS. I ended up telling a few friends what was wrong and word got around, but it didn't convince anyone that it wasn't AIDS. Another rumor was that I was a drug addict and that I didn't have pnemonia but withdrawls. That one got out because someone saw me taking 2 tylonol. I am so glad we don't live in that small town where every move was open fodder for the gossips.

Good for you on standing up to that woman, I never did because I lacked the energy and knew it would only make it worse. I would love to take out a front page ad that announces I have lupus and what lupus is in that tiny backwoods town we lived in. Wish I could afford it cause it would be amusing to see what people made of it.

I am so sorry you are flaring. I wish I had the energy to do something like a ball game, course for me it would be more like visiting my daughters than watching a game.

I really hope that your doctor can do something. I am so lucky that my rashes are very mild compared to what it sounds like happens to you. Of course I don't have skin lupus, but psoriasis and exema along with the malar rash.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


unhappy25
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 4/7/2008 3:55 PM (GMT -7)   

I am glad you told that woman. So many people don't anything about lupus or even heard of it. I wish that their was more awareness out their on lupus you never here anybody talk about. People don't think about what they are doing of thing that they now what is wrong with you just by looling at you. I get stared at all the time. I have to wear a wound vac. on my foot because I had a ulcel on it and it has been their for 7 years. now and it just will not heal and people just stare at me all the time because I have to carry this thing around and it has a long tube coming out of it and I can't hardly walk. And I hate to go out because of people staring. But I still go to my son's ball games but I just try and not to look people in the face I just try and avoid people.


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 4/7/2008 4:16 PM (GMT -7)   
Thanks ladies for the support. I get tired of being stared at myself. Her is one for the record books.
 
I live about 2 hours away from Disney in Florida. Last time I went  with Hubby he got me a wheelchair and pushed me around. Being a good girl I had my hats on. Being a big Greenbay Packer fan I have a pink hat for Brett wife who had cancer ( hat has a big  green G  on it) the day I wore that hat people opened doors for us held doors for us you name it they did it. Jon went to get us a drink and a women had asked how long have I been in remition for. My husband thinking Lupus said a few months now. When he come out and saw me sitting there it dawned on him. The next day I had a different hat on and it was totally different. They let the doors slam and ran in frount of us and my husband go so angery with this one man he jumped in frount of us while we walked he did not stop the wheel chair and he got a good size cut on his leg and he told my husband it was his falt he was bleeding Jon told him if he had not been in such a hurry and jump infrount of us he would be ok. Security showed up and let us go. I think the guy had to have stitches.
 
  What a difference a hat makes.......
Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 

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