I can totally relate, to your post of how irritating it is when someone askes you so are you feeling better like we are recovering from the flu, my standard anwser is thank you for asking we have good days and bad, For me the most frustrating is even on my good days my face shows that horrible rash from lupus so even on my good days people will look at me in horror, like Ive taken a blow torch to me face, at least I have found something for that, its nice when I am feeling good to be able to look the part. lol RisaRae said:
Thank you for the compliment. I think mustering up the strength to keep up my appearance keeps me going, and it's therapeutic . I don't want to be constantly reminded of Lupus every time I look in the mirror. I AM NOT LUPUS! I AM ME! If you have come this far with Lupus keep on fighting. I'm determined to do whatever I have to be alive for my family. I don't like my kids to see me down and suffering, so I get up like everything is normal, and do my hair, or my makeup and continue living.
whispers said:
I like your positive attitude,, and may I say you photo shows that you are a very beautiful woman, as a female its tough to maintain a good look when you feel bad,, and all your bits are falling apart,, Im 55yr old,, and many bits have just gone,, but you keep going,, do the best with what we have,, and always remember their are so many in this world so much worse off than we will ever be,,
RisaRae said:
I know exactly how you are feeling when it comes to the constant pain everyday. I often get frustrated when people ask me if " I'm feeling better ", when the reality is you never really feel better, you just manage. Sometimes I think of my life and I feel really down about what is going on, and what I could possibly go through with this disease, and I ask myself "Why me?". Sometimes I cry about it, and it can be overwhelming. I have only been diagnosed since February, and I am 31 years old. I thought I would be enjoying life. But I realized that there is a greater purpose for me, and possibly I was chosen to carry this burden, to be able to look outside myself and help others with the disease. I never take life for granted now. I live for my kids, and my family, and I'm grateful that I'm alive. Even though I'm suffering, I remain optimistic. Be strong! Be strong for yourself, and your family! They need you. Don't give up and let Lupus win. Have your doctor reevaluate your treatment if you are not finding relief. You work long hours as well, have your family pitch in if they can to help you around the home, or you may have to scale back some hours. The worst flares for me come when I over exert myself.
You know, I am guilty of asking that, mine is always in hopes, in a very caring way, that you do feel a little better, not in a way expecting that you are fully recovered. I know how frustrating it is to be unwell and people not understanding that even though you are not 'terminal, as they understand it',that you are never going to get over something. I think part of that reason is that they have never had anything that they could not get over.
That said, I have plenty that I am never going to get over, I am certainly not defending anyone who has hurt you or been unkind, I am really confessing that I have done it and continue to do it out of caring, just ask my good friend Terri. I really want her to feel just a bit better, to be having a good day, even if it could never be the kind of good day that I have in mind for her!
Hi kate , yes i know what you mean - people look at you even on your goods days as if something is wrong with you and that you missed something ... LOL I also have the rash , and when am having good days they say the same thing !!! oh what's the use ??? I really don't care anymore how MY SITUATION effects people and i don't focus on the looks of others anymore either .... Am living for me and that's enough for now to deal with along with LUPUS and it's problems on day to day base !!! wish you well and stay strong ... talk with you later .... Beverly L.
kate said:
I can totally relate, to your post of how irritating it is when someone askes you so are you feeling better like we are recovering from the flu, my standard anwser is thank you for asking we have good days and bad, For me the most frustrating is even on my good days my face shows that horrible rash from lupus so even on my good days people will look at me in horror, like Ive taken a blow torch to me face, at least I have found something for that, its nice when I am feeling good to be able to look the part. lol RisaRae said:
Thank you for the compliment. I think mustering up the strength to keep up my appearance keeps me going, and it's therapeutic . I don't want to be constantly reminded of Lupus every time I look in the mirror. I AM NOT LUPUS! I AM ME! If you have come this far with Lupus keep on fighting. I'm determined to do whatever I have to be alive for my family. I don't like my kids to see me down and suffering, so I get up like everything is normal, and do my hair, or my makeup and continue living.
whispers said:
I like your positive attitude,, and may I say you photo shows that you are a very beautiful woman, as a female its tough to maintain a good look when you feel bad,, and all your bits are falling apart,, Im 55yr old,, and many bits have just gone,, but you keep going,, do the best with what we have,, and always remember their are so many in this world so much worse off than we will ever be,,
RisaRae said:
I know exactly how you are feeling when it comes to the constant pain everyday. I often get frustrated when people ask me if " I'm feeling better ", when the reality is you never really feel better, you just manage. Sometimes I think of my life and I feel really down about what is going on, and what I could possibly go through with this disease, and I ask myself "Why me?". Sometimes I cry about it, and it can be overwhelming. I have only been diagnosed since February, and I am 31 years old. I thought I would be enjoying life. But I realized that there is a greater purpose for me, and possibly I was chosen to carry this burden, to be able to look outside myself and help others with the disease. I never take life for granted now. I live for my kids, and my family, and I'm grateful that I'm alive. Even though I'm suffering, I remain optimistic. Be strong! Be strong for yourself, and your family! They need you. Don't give up and let Lupus win. Have your doctor reevaluate your treatment if you are not finding relief. You work long hours as well, have your family pitch in if they can to help you around the home, or you may have to scale back some hours. The worst flares for me come when I over exert myself.
How are you feeling now in yourself since you started the thread?.....as we all know the pain your going through and it changes from one day to the next but are your seizures still the same also.
Oh Hon... I have had grand mal and petite mal seizures since I was 11 and I am 49 now. It sounds like your are having beak thru episodes. Has your doctor suggested upping the does of your anti convulsion medication? Maybe there is something else going on and the Lupus is just exacerbating it. Have your doctor check the therapeutic levels of your medication to make sure it is in range. Many things can cause that to drop..drug interaction, hormone changes ( like a drop in testosterone) and weight gain. I am probably just telling you what you already know, hang in there and God Bless
You need to listen to your body, cut your hrs of work down. Seeing a pain mgt Dr might help with control over your symptoms. Ignoring the symptoms isn't going to make them go away. You have to be proactive in your treatment. You can only push yourself so far & you won't be able to work @ all. Your seizures can be controlled by the right combination of anticonvulsants. Work with your Dr's to get the Lupus under control don't let it control you
Yes you are so right OC GAL, getting the situation under control (LUPUS) , exspecially , is the first step . At this present time i wish that my doctors didn't take me off from working , ( now that they have my LUPUS under control ) , i want to go back to work ( eventhough i can't hold nothing in my hands for a period of time ) . Just first get the doctors to help you get the problems under control before you decide to stop working - it can be done .. wish you well.... Beverly L.
How are you feeling now since you added this thread concerning your health....as member's have'nt heard off you much and we all know how the symptoms can get you down badly.
So sorry to hear you are having such a bad time of it ( even moreso than the 'usual'). Please try to keep your spirits up & continue to chip away for every ounce of 'gain'.
Must you work such extreme hours? Must you cook dinner after working such long hours?
Is there any scope to steal back some time to care for yourself?
Can you bear to try again with the Doctors to try & fine tune your seizure medications?
No doubt you are an expert on managing your situation, sorry if my Q sound 'flip' best wishes to you. Kaz