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Thread: i HATE this disease!!!

  1. #1
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    Default i HATE this disease!!!

    I'm sooo mad!! :twisted: I'm 28 and i just got diagnosed 3 WEEKS ago! Yes... i feel like i'm the only "newbie" around here - i know that all of u have been going thru this for YEARS and have kids...something i want sooo badly it hurts

    its soooooo hard for me because i still want to do a lot of things! i'm even afraid to sleep over my boyfriend's house because it's so hot in the valley and what if i forget my meds or have a really bad arthritis attack again?! it's his 30th birthday next weekend and its supposed to be his best birthday ever! he wants to go to Vegas and i'm realizing i can never go to Vegas or any other vacation spot EVER again w/out those FLARE UPS u all talk about! i know about the sunscreen and hats and all that stuff... but how irritating! i dont want to wear a HAT in vegas or cover my shoulders w/ a sweater in 100 degree weather! i used to be able to go swimming and sunbathe! But not anymore right? i wear SPF 50

    i'm going thru so much right now! i'm afraid of all the other stuff u guys talk about - the kidney problems and the fevers. i dont really get Migrains - sometimes it's just the back of my head. my knees hurt sometimes (it hurts to get out of bed to go to the bathroom and walk). And i cant even touch my face w/ my right arm! its weird!

    Sorry just venting - i'm depressed!

  2. #2
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    I'm so sorry your feeling bad. I remember when I was first diagnosed I thought my world was coming to an end. I had two boys who needed their mom. The depression was so great to just took over even when I really tried to fight it. Then one day someone said to me "snap out of it, noone knows when they will fall ill or die. So you have to live life like each day is you last. You can't give up for your boys sake, do you want them to remember you like this or as a fighter." Well that did it, I got off my butt and started the fight. I'm not saying it isn't easy but I do beleive you need to go day by day.

    Who said you couldn't go to Vegas. My family goes each year for a fun family reunion and I go and do what I can do. The lights and the sounds seem to energize me. Keep living your life and don't let Lupus stop you. Think positive, take your meds and go have fun.

    I live out side Redding CA a very hot place. Last weekend it was 117* Not every hot day is going to give you a flare. Otherwise I'd be in a constant one all summer long.

    Your young you have a very long life ahead of you and you need to start living it.

  3. #3
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    Default Re: i HATE this disease!!!

    i can understand coz i too went thru same emotions when i was diagnosed at 27 several years back. but over the years i have tried to understand the disease and have been managing pretty well with almost all normal activities. I had my two kids after i was diagnosed a lupie and everythg was fine. As for the sun, i live in Dubai, and i can tell you its pretty hot here all thru the year ( even in winters) . All sunny days wont result in Lupus flare ( otherwise i would never dare to go out :lol: ) so go ahead and have fun but dont overdo it.. there will always be good days and bad days and u'll learn to cope with it...









    Quote Originally Posted by Rach
    I'm sooo mad!! :twisted: I'm 28 and i just got diagnosed 3 WEEKS ago! Yes... i feel like i'm the only "newbie" around here - i know that all of u have been going thru this for YEARS and have kids...something i want sooo badly it hurts

    its soooooo hard for me because i still want to do a lot of things! i'm even afraid to sleep over my boyfriend's house because it's so hot in the valley and what if i forget my meds or have a really bad arthritis attack again?! it's his 30th birthday next weekend and its supposed to be his best birthday ever! he wants to go to Vegas and i'm realizing i can never go to Vegas or any other vacation spot EVER again w/out those FLARE UPS u all talk about! i know about the sunscreen and hats and all that stuff... but how irritating! i dont want to wear a HAT in vegas or cover my shoulders w/ a sweater in 100 degree weather! i used to be able to go swimming and sunbathe! But not anymore right? i wear SPF 50

    i'm going thru so much right now! i'm afraid of all the other stuff u guys talk about - the kidney problems and the fevers. i dont really get Migrains - sometimes it's just the back of my head. my knees hurt sometimes (it hurts to get out of bed to go to the bathroom and walk). And i cant even touch my face w/ my right arm! its weird!

    Sorry just venting - i'm depressed!

  4. #4
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    I too understand how you feel. I hate wearing sunscreen, I hate covering up too. I just want to go out and be normal just like everyone else. I don't like how some days I feel like I'm 90 when I am only 27. Now granted I've lived with this disease practically all my life, but I still get those days of being depressed. And wanting to have kids so badly it hurts is something I can definately relate too. That is one of the stressors that contributed to my last flare. Every last one of my husbands siblings even the one who is not married have had children. When me and my husband were finally going to try my lupus flared up and my sister in law announced that they were having a baby.... of all months to announce that. So I've cried my eyes out and ended in a flare and am now still battling some remaining issues with the lupus nephritis. We have finally accepted that for our first child we are going to adopt this fall. But I'm not ruling out trying to have a baby in the future, and neither have my doctors. But now is just not the right time. So while we desprately want to be parents, I'm going to be play it safe for me and our baby and we're going to adopt. But I understand how you feel.
    It does get better though. All of us experience different symptoms. While my last flare occured after remission for 8 years I had never had joint pain. This past flare I've lived with the worst joint and back muscle pain I've ever experienced. I couldn't even function by the end of my work day. I'd drive home crying because it hurt to walk to the car and just drive home. But my doctors got it all taken care of and while I still am battling some kidney involvement- all my other symptoms have gone away. So just remember we are all different with our symptoms. Get yourself under control with your meds and you'll find that you can live a normal life and do all those things, like spend the night at your boyfriends and go to Vegas! Don't let the sun stop you either. Do things during the day that you don't have to be in direct sunlight. Have tons of fun in the evening when you can still be in the sun but don't need all the gear to go along with it. There's no doubt that there will be days that you just want to scream, and go ahead. But remember there are better days around the corner :lol: :lol: :lol: :lol:

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    I soo understand what you are going through. I was dx six months ago. I sat here crying. But stopped. This is my first summer, I'm suppose to go the Miami. I so afraid. I don't know what is going to happen. I don't what to be the sick girl. I use to do everything and anything at a drop of a dime. I know it is very frustrating and sometimes tired of coping, putting on that fake face when asked are you ok. It really gets on my nerves. But it is going to be a way of life. I push through all the pain and frustrations and why. I work full time as a special education teacher. I have a husband who is a fireman who is rarely home, I have a 3 year old and a 10 month old. I just say it could be worst. some can't get out of bed. I have to realize that I am still blessed.
    cas

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    I stopped putting on the fake face... Sometimes you have to or people take what you are going through too lightly... Because you don't LOOK sick... So when I feel like crap, I tell them... If they don't like it, too bad!

    Sometimes I put it on because I don't feel like acknowledging it... But, if I don't want people to just assume that I can do whatever and that everything is all right, I tell them!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default Lupus

    Rach

    I know how you feel! I'm not 28 (I'm 47) but I've been living with the symptoms the past few years and finally got a firm diagnosis last July after having seizures/migraines for a couple months. Yes - having lupus really sucks but look at it this way - there are people who have it so much worse! Lupus can be controlled with paying attention to the signals/taking meds/keeping dr appts. I have a best friend who is only 38 and is dying of brain cancer. She's been fighting breast cancer the last 7 yrs and now the cancer has moved to her brain. She has 2 teenage sons who are eventually going to be without their mother.

    I was angry and resentful when I finally got the diagnosis. I had just accepted a new job (didn't realize how serious this was at the time), had to train in Tempe AZ and fly back and forth for 7 weeks from Colo to AZ, have chemotherapy and deal with daily seizures/headaches. I have a family to help support and was not going to give up! It's amazing what you can do when you set your mind to it!

    Since being diagnosed, I've gone through 6mos of chemo and then had surgery this January to correct bursitis of the hip. I then proceeded to get a staph infection, was recovering from that one and then got another one that was much more serious (I had MRSA). Yes, this last year has been pure hell but I have my family and friends support so I didn't give up.

    Go to Vegas and have fun! You'd be amazed how much better you will feel just to get away and reduce your stress!

    Our prayers are with you! Have a great time in Vegas!
    Catlady4520

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    Default I feel like we're in the same boat...

    Hi, I'm new to this board and new to this lupus world too. I was just diagnosed March '06 at the age of 30. I'm still questioning myself why me and where did it come from??? I do feel a lot better than during the beginning, before I was diagnosed with it. I had tons of tests done on me, to find out what's wrong with me. Ive been sick for a month with high fevers everyday, swollen glands in my neck, loss of appetite. Then finally tests came in: it's LUPUS! There are times when I'm symptom free and flare free for about 2-3 wks. But this weekend was awful for me. I had a flare. Saturday morning, my body felt like a train hit me. My fingers were swollen. My knees and ankles were aching. I had such a bad headache. I stayed out of the sun all weekend, and got some rest and relaxation, and now I feel better. I'm still a newbie to this disease, but day by day, I'm learning more about it. I do get mad that its summertime and I can't go outside unless its after 4pm or if I wear a hat or carry around an umbrella. Being out in the sun drains me out so much. I get so tired and get rashes at times. The one thing that's good about lupus is that I always look good on the outside. But if only others knew how I feel in the inside. My mother still doesn't understand why there are days where I just want to lay in bed all day. She thinks I'm lazy. I almost feel like she thinks I'm a hypochondriac, pretending that I'm ill. :x Its so frustrating!!! So whenever you need to vent out, you know where to find me... Nice to meet you.


  9. #9
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    Hi!

    Welcome!

    Have you read the spoon theory yet? It's a very good way of descibing what we go through on a daily basis... Most "normals" I have given it to understand it, and are more understanding afterward... there are still some that don't, and WON'T... But it helps...


    http://www.butyoudontlooksick.com/the_spoon_theory/
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default hey

    I know how you must feel. But, sometimes when you are down about some stuff you gotta look at the positves in life. Right? I mean you said you are 28, your alive, and doing well at this point and time right? just hang in there its sounds really hard at first when the doctors are telling you oh, you cant do this or you cant do that but trust me you learn in time what your body can handle and what it cant. and just think like i always say i should be on my knees thanking God, that i have what i got and dont have something that is gonna kill me in like 2 weeks!!! yaknow stay postive and you will get through it lupus is hard to deal with but can be delt with. and you are a lil bit older than me so just be lucky that you got it at 28 cuz i got mine at 13 and im 18 now and they are saying that i might not even beable to have any kids but, i have also had lupus for awhlie and i have other health prob. so hang in there and im sure you will beable to go on your trip but take from me, just be cafull. Be safe!! but have fun!!!!! ENJOY LIFE!!!

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