11-14-2003, 07:50 AM
Yep this Lupus is a hard and scary thing I was just diagnosed in September,went on Plaquenil, then off becase of itching, now on again and keeping my fingers crossed that the itching doesn't come back, because I don't want to be on cortizone therapy if possible.
Doctors thought I had MS but never found proof of it and I have a blood disorder that is common to Lupus and both these things mimic MS but every once in a while the suspicion of the MS comes back.
Anyway it's weird to be this sick I often wonder" what have I done that I have all these dumb diseases?" "Did I win the lottery of misfortune?" Then I feel bad for feeling sorry for myself.
People have no idea what Lupus is they all say things that leave me baffled.I called a friend to tell her I've been diagnosed. Her response was "Oh that's not a big deal think of it this way so and so has skin cancer and she is younger that you and has little children." I really did not say it was a big deal but it bothered me to know that at 44 I've had congestive heart failure 3 years ago, and kidney infections and pain and headaches and so much medication I could run my own pharmacy if I wanted to and "It's no big deal?" When she sees's me now and asks how I am I just respond "fine". Because you can't expect a person to understand.
Typical response is "Oh I know somebody that has it and they are fine". Yeah me to, I also know me, I'm fine looking not fine feeling, of course I don't say that I just think it.So you learn to not give details to people who can't handle it, and there are very few people that can, and really for the most part I'm fine.
My husband is supportive my children are 20 and 18 and they live at home and help out so I consider myself very fortunate, I also have the luxury of not having to go to work full time I help with my husband's business running errands whatever computer work he needs,but if I don't want to go to work I don't have to.
I cook dinner wash laundry shop for food and I have a helper for the heavy duty work , once a week.So life could be a lot worse, what gets to me is that if I was not sick I could do so much more, but this is the way it is and I have to accept it.I've always been an overachiever and maybe I think that's what got me sick to begin with.
So far my diagnosis are,Lupus.Fibromyalgia,congestive heart failure (which right now my heart is as if nothing ever happened to it,yeah!), anti cardiolipin antibody,hopefully that's all but you never know. I think for all that's wrong concerning my health,I'm still kicking and plan to be for a long time.
Thanks for your post and your shoulder,
hi, i'm lel, 15, always had lupus. i feel so sorry and sympathetic to you, you have so much to deal with, it is true! i only have lupus, but we still don't know what type, or to what extent. i just laugh at it, because guess what? it hasn't killed me yet, it hasn't kept me from attending school, making friends, and it's kept me very unique. i attend a public highschool daily, usually fall asleep during the afternoon, but it's ok with the teachers. if i were you, having to deal with all the problems you have, i would just do what i do now: when you hurt, let it hurt, not for too long, but for a minute, tough it out. after a minute, go and do somethng that will take your mind off of it, once you don't hurt because your not paying attention, go 'hey, i don't hurt anymore,' and remember how much you DID hurt, then you will appreciate no pain more. it may sound weird, but it works for me. it's like the poor man, living on the streets, lets say he buys a lottery ticket. he wins, suddenly he's a rich man in a big house with a nice car. he will then be so much happier than the man who has always been rich. maybe i'm completely wrong, but it works for me. when i get pain, i go practice my cello, read a book, do some homework, that type of thing. but remember that it did hurt. it will make you appreciate the life without pain. but i laugh, i laugh, and i laugh. i use my lupus at school to determine whose nice and who's not. a kid once asked me what was wrong with my hands, i said 'oh that, it's just an alergy' he said 'an alergy to what?', i said 'oh, just the sun'. a couple days later, the kid comes back and says 'so, when you go outside, do you like die?' i say'how would i get into the school?' ha! that left him behiind! anyways, what i'm saying is think of it as an advantage, somehow. whatever way you want, but it helps to look at it positively. thanx, lel
06-01-2004, 09:10 AM
Hi my name is Maria,,,,I was diagnosed about 7 years ago,,,with
Systemic Lupus,,Scleroderma,,,Raynaud's Disease & Multiple Sclerosis,
I am married,have 3 kids, 2 sons still at home,, & a daughter married with a family of her own,1 son,,,,,our first grandson,,,,,
I am emotionally drained,,,,,here I am with a home full of family and still so alone,,,,,my sons help with what they can,,,,my daughter will drive me around,,,,,,,and my husband he leaves me alone,,,,,,I learned to keep the pain to my self,,,,,I learned to go with out,,,,my kids just to not understand what I am going through,,,,and I try to stay strong for them,
I put on that smile and go on,,,,,,my husband keeps telling me it is all in my head,,,that I am not sick,,,,that I am crazy,stupid & brain damaged,
,,,,not once has he ever gone with me to the Drs.,,,,he yells at me as if I am a child,,,,,so here I am with no one to turn too,,,,I have no siblings no family other than my kids,,,,I stay at home , I have no friends,,,at times I feel as if I have some kinda curse on me,,,,the only thing that keeps me going is my kids and God,,,,,,,,,,,
My life takes me back to when I was born,,,at 4 days old my birth mother gave me up,,,,I was raised by my birth father and his wife,,,,they gave me the best they could,,,,I was an only child,,,,,I love them dearly,,,,,
I think of my birth mother always,,,,when I was younger,,I used to say ,
if my own mother didn't want me ,,,why should anyone else,,,,and now that I am 40 with my own family,,,,I wounder,,,,,and here I feel as if I am carring a cross on my shoulders,,,praying,hoping,wishing, and looking for a shoulder to cry on,,,,,I ask my self,,,will it ever get better,,,,,and what is better,,,,,but in my heart I know that I am not alone,,,,God is with me and keeps me strong for those around me,,,,,and every day as I awake I put on that smile,,,,and the more I hurt , the prettier I try to look,,so that they say to me you don't look sick,,,,,am I wrong,,,am I just hurting my self,,,,,I know that we all need a shoulder from time to time,,,,,
so for now I will keep staying strong and keep God by my side,,,,
A shoulder to cry on,,,,for you side by side,,,,,