I was wondering.

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Regular Member

Date Joined Nov 2007
Total Posts : 47
   Posted 11/9/2007 1:00 PM (GMT -6)   
I got to thinking.. everyone has their own ways of dealing with pain and chronic illnesses. Eventually overtime, you tend to build up a tolerance to pain and you try to see past it.. for me, even if I can't work or lead a steady social life, I still try to get up and get out, put on make up.. and sometimes it makes me feel better about myself. I think for some of us, it's a way to feel a bit more normal despite the illness that attacks our body and tries to keep us down. What bothers me sometimes is people that don't understand, and I know nobody else is going to understand, fully.. but it bothers me at times, if I'm out or with my mother, or friends and someone says.. "Oh you don't look like you're sick.." or "You look nice, you must be feeling better." I do have days where I don't go anywhere, don't bother with makeup... but people seem to think that you should look like you feel horrid everyday. My mother, and the people around me that I live with, are the only people that see me when I'm my worst... when I can't move because the pain is too bad, or I'm too tired, or I can't move my head at all because I want to cry from the pain. Those are the people who really matter, and I know that.. but I just wish that people would be a bit more understanding and a bit more open minded and realize what something like lupus and FM can do to a person.
I think that the people that endure this disease, and get out of bed despite the henderence are very strong people.. and I wish you all well.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.

Regular Member

Date Joined Apr 2006
Total Posts : 169
   Posted 11/9/2007 1:55 PM (GMT -6)   
Rebecca, you are so right -especially the tolerance to pain. My 18yr old son and I got into an arguement last week, I told him you need to get a job or go to school, he told me 'well you ain't working and you are doing nothing too. This hurt me so much! because when I do get the energy to clean I pay for it later w/the body/stomach pain. When I'm in bad pain which is almost daily, I go and lay in my room because I don't want my 4 kids to see me in so much pain, I could barley move. Only my HB does. I feel like my son thinks I'm faking it or something cause I look OK on the outside.
Somedays, when I'm walking really slow, my lil girls will say "r u ok mom?', I say yes I'm ok, the sound of thier concerned voices say's it all.
Since last week I've had a bad cough and flared at the the same time, one night I felt like I needed to go the ER but I didn't want to go through all the hassle...
I can relate w/you when u can't move your head, my neck is stiff too and its very hard when I'm driving too. Does anyone have any advise on how explain to my son the terrible disease Lupus?

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 11/9/2007 3:03 PM (GMT -6)   
  This is a really tough issue for us all. Have you read the spoons theory? www.butyoudontlooksick.com  It is a great story and helps people understand what we go through on a daily basis. Maybe if your son reads it he will have a better understanding.
  I have to remind my family and friends sometimes that I'm not on disability for the fun of it!!
  Please take care and you will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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Date Joined Dec 2005
Total Posts : 1950
   Posted 11/10/2007 3:11 AM (GMT -6)   
My family's answer was avoiding me completely when I was in pain, sick or suffering. They thought I was just faking it. Later in my illness, during an overnight stay, I went into horrible body pain and was screaming and crying and really really bad and I think it finally hit home with MY parents at their age, that I was really sick. They were very concerned that the ER could not and wouldn't dx anything and just treated the pain. The ER knew the problem wasn't simple. My parents have come to realize that. My kids are kids, they just don't think, my youngest is more compassionate because he has epilepsy and other health problems, but when I got my two neck surgeries, they couldn't understand why I was crying in pain in bed and sleeping alot and why I couldn't do what they wanted me to do. They just don't think sometimes. On long term illness, my kids do not want to see that I have a long term illness, at least they don't want to talk about it or anything, it really bothers them, so they know they feel it, forgetting or taking it lightly is just their way of dealing with it and I've learned to actually cherish that, because it helps me to forget, and though I am still sick and they still see me in pain and can't do what all they want me too and have no energy, I've learned to make jokes with them and let them keep it light. In their hearts they know and I'm glad they at least still try to involve me in activities, even if it is housework or homework or whatever it is. I've had them ignore me for a while and that was not good, giving me the "you should be in bed relaxing" crap and shutting the door and shutting me out of their lives. That can be bad too. 18 year old boys are like no brain! Mine is 19. My son said to me when I couldn't do what he wanted "but you're ALWAYS sick!" and I said back "yes I am, and that is something you just have to accept, I do what I can" and maybe that is what your son needs to hear. That it is work just getting out of bed and that he wouldn't want to feel like you do. Try encouraging him with all the possiblities of what he could be and do if he went to school or worked. Try watching a movie or two with him that might inspire him to be "all that he can be". Also remind him that you can't support him forever and that you once worked too. Doesn't he want to be a man instead of a kid and have his own money? The first thing I did is cut back allowance to a bare pittance. That made my son realize that if he wants something he's got to work or go to school. I know it hurt you, but he doesn't want to face the fact that you are sick, it hurts and scares him, so you need to gently remind him that you do have some health issues, whether he wants to face it or not, and that they prevent you from working or you would be. Remind him that he has his whole life ahead and it can be a great adventure, find out what his dreams are, real dreams deep down and help him to see that he can work toward these things and live a better life than you are, with more money and toys and travel, and maybe take care of his old mom someday! I am in the same place with mine only its a little different. But you have to remind them over and over again that life is full of great possiblities for his future because somewhere these young men are really getting the message that there is no future for them and they can't accomplish anything or be anything and seem to focus on the obstacles instead of the prize. Look at travel magazines with him, all kinds of things like that, and help him to see that there are many ways for him to do something cool and fun. Peace corp is interesting. I may talk to my son about that, if they will take him. I want him to see the world, I think it will help him to grow up. Well, I got to go. Take care and let me know what happens. Just remember, at least he IS talking to you and letting you know where he is at honestly and though its not what you want to hear, don't take it against you, he's just protecting his own feelings and fears of losing you by denying or downplaying your illness, its how he copes, and I can't say its necessarily bad. It would do him no good to worry constantly or pity you. Take care and let me know what happens.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 11/10/2007 10:50 AM (GMT -6)   
Rebecca, I think a lot of us can relate to what you are going through. THe Spoon Theory is the best. I printed out copies to give to some of my family and close friends. THe thing that is hard for me to get people to understand is that I think when I tell people I am having a good day, they think I feel completly better - just like a normal person. What they don't know is that on my good days, I still fight pain and fatigue and have all my symptoms.

I give you so much credit for getting up and trying to to put make up on and trying to make yourself feel a little better emotionally.

Hang in there and know that you are not alone in this.
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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Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2007 10:59 AM (GMT -6)   
Hi Rebecca,

Didn't have time to read the replies above . . . but wanted to send you a hug.

Yes . . . people think I look really healthy with my rosie cheeks. "Oh, you must have been out sking!!" or "You look so good, you must be feeling better today" . . . I just give a little smile and say "Thank you" and let it go. I think the ones who really care about you can read you eventually. But the kids are different . . . especially boys . . . they NEED you to be well, therefor you ARE well. I have found that I don't need to 'make' people understand. I just do what I can do and I leave the rest. If I do need to excuse myself early when I'm tired. I do a lot of start and stop at home so I can get things done. And that's ok . . . you can actually accomplish a LOT like that.

Good for you . . . putting on make-up and wearing attractive clothes IS important to our sense of well being. Go for it . . . and don't worry about getting people to understand how you feel. They can't feel your pain and they can't see your pain . . . so it IS really hard for most to understand. Its OK.

I'm off to put on some lipstick to go with my rosie cheeks!!


In His Grip

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Psalms 139

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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Regular Member

Date Joined Aug 2007
Total Posts : 171
   Posted 11/10/2007 10:54 PM (GMT -6)   
My sister also has lupus. She's never had a serious flare to last months or even weeks; she's never had to take anything more than an anti-inflammatory. In August, which was the last time I spoke to my sister, I told her that my rheumy was very concerned about kidney involvement and didn't like how my blood tests looked. I explained to her that if it continued I would have to go on Imuran or some other type of drug similar. She told me that there is no need for me to go on any drugs like that, that my lupus wasn't that serious. Talk about a slap in the face .. this comment coming from my sister, let alone someone who also suffered from lupus. Goes to show you ... unless they are walking in your shoes do they fully understand what you are going through.

However many people we deal with on a daily basis who don't understand what we are going through, there are 50 people on here who do seem to know what we are going through. That's when you'll find yourself visiting the forum more, when you are in need of the support your family and friends aren't giving you.

We're here when you need us. Hugs!
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
There is no psychiatrist in the world like a puppy licking your face.

Regular Member

Date Joined Nov 2007
Total Posts : 47
   Posted 11/11/2007 3:15 PM (GMT -6)   
Thank you all very much for the kind words.. I've really needed them, I'm having bad flares with both lupus and FM...Even down to using the good ole' cane.
Thank you.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.

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