View Full Version : (¯`·¸•´¯) Hi im Klaire (¯`·¸•´¯)
04-21-2005, 02:36 PM
Hi every one!! Im Klaire, and im new to this site. Im 17, almost 18 and have been diognosed since december 2002.
ok well the doctors say they think i have had it for about 4-5 years but they are so wrong...
since i was a baby i have had the 'butterfly rash' and from been very young i have had joint problems ,aches , pains etc.
when i was about 9 i started going to the doctors CONSTANTLY complaining of joint pains. i had so much time off school cos of the pain of walking the teachers thought it was an excuse because to look at i was fine. after about two years i was referred to ( excuse my spelling -my excuse is i missed school -OK!) rumatology, well obviously i cant spell so heres how its said outloud: Room-A-Tol-ogy...where she told us i had arthritus. i had physiotherapy (hey i spelt it right! i think) :? and then discharged.
the doctors then passed it off as 'growing pains' and 'its a phase' and of course cos of the time of school 'its probably problems at school' and she just doesnt want to go.
this went on until i was 15 when i started having migraines so bad i couldnt open my eyes, i was sick all the time and began to feel dizzy and half way through the day i was almost collapsing with fatigue.
my family decided to changed doctors and in the routine tests they found 4+ blood and 4+ protein in my urine.
within two weeks they had me in the hospital where i had a kidney biopsy which confirmed that i had lupus nephritis grade 3/4.
well that was the day my life basically ended. i was fairly popular in school and all of a sudden i had lost all my 'friends' all but two of them because they 'didnt want to catch it' or as i have said in a previous post, they didnt believe me when i suddenly had a flare.
i became so depressed i didnt leave the house for weeks and when i did i wanted to come back home ASAP.
well i say my life ended, which i truly did feel that at the time, but things do pick up. i got told that when i was first diognosed and didnt believe it , but its true. i feel alot better in my health and about my self and am been treated still for depression but hey what do you expect. i have a disease. who wouldnt be depressed :P
so any one who wants to talk then im on MSN Messenger ALOT :D and id be happy to chat to you!
hope 2 hear from you all soon! Klaire
p.s sorry for the essay 8)
p.p.s forgot to add i also have SLE and ARthritus which jumped on along the way! :D
04-22-2005, 03:52 AM
Just wanted to say hello, I have SLE and arthritis too altough I don't have the rheumatoid factor, (nor the X factor either these days. :lol: )
I'm glad that you are feeling better in yourself and your health. That's what I'm aiming for right now....
I was diagnosed around 18 months ago, but like yourself suffered with lupus from a very young age. I know this is not a thing to be glad about of course, but I had the same problems with my GP's about growing pains. What a load of rubbish hey, growing dosen't hurt :D I used to come home from school and cry from the pain I was in yet the doctors didn't want to know. The like yourself I suffered with the migranes and the doctor told me to keep a diary of them. so I did and they gave me anti depressants which made me sleep for 3 days - well I guess you could say I didn't know anything about the headpains at that time so maybe it worked. :)
I'm sorry that you lost many of your friends due to SLE, that's really a shame the reaction of other people concerning lupus. There are fantastic people and advice on this website. Thanks to them I am that little closer to accepting my cards in life. If you have any tips on how you are coping I'd be glad to hear them.
04-22-2005, 09:54 AM
Hi Klaire and welcome to our forum and our family
Believe me, almost all of us can look back and say that we were suffering with this disease many, many years before we were finally diagnosed. Like you, during my teenage years, I was scorned for "always being sick, in pain or tired!" And, like you, I still hear the "Well, you don't look sick!"
I have found that adolescents who have lupus historically are not given enough information about their illness, their treatment or even their prognosis. Consequently, their depression seems to go a bit deeper than ours, as adults, because we are generally well informed. I especially thing that teenagers and children should have a thorough understanding about the drugs they are taking for lupus and especially the side effects of those drugs. In this way, you will be better able to know what is happening due to the illness and what is happening due to the drug treatment. This will alleviate some fears, which will, in turn, help with the depression a bit.
Your feelings of isolation, and of being different are not uncommon...we all have been there. All lupus patients go through that period. Like you, most of also get through those feelings so that our current view of our situation is that WE ARE NOT that different and WE ARE NOT ALONE.
You will eventually discover that lupus does not interfere with your important relationship. You decide if you will or will not tell very many people about your lupus or what it is like, and what kinds of thing you are putting up with.
In a study conducted with adolescents who had lupus, it was found that, "even considering the hatred of steroids as a treatment, as far as their view of the future was concerned, very few of the respondents thought that it was going to alter their career choice. After being treated for lupus for an average of six years, patients discovered that it did not modify most of what they wanted to do or what each was able to do in day-to-day life. Thoughts about going to college or what kinds of job opportunities they were ultimately going to see were not being modified very greatly by having lupus."
It was also found that teenagers were much more astute about their symptoms, such as fatigue. Interestingly, teens can separate the fatigue that lupus produces from the fatigue that almost all adolescents share. They can tell you that the adolescent fatigue is something that makes them want to sleep all the time unless a friend calls up and suggests some activity and then suddenly they are not tired anymore. Lupus fatigue is different because even though the friend calls, you still can't get up the energy to go ahead and do it and I was quite amazed that the adolescents had that much insight into themselves as to the difference.
As SLE is a condition that is most frequently diagnosed in women between the ages of 15 and 45, the effect on adolescents is an important consideration. Into this picture comes a condition such as SLE with its symptoms such as fatigue, weight changes, fever and swollen glands, butterfly rash, photosensitivity and involvement of various organs. These may be treated by occasional hospitalizations which limits contact with your friends, and by steroids which will probably result in facial and body changes. Regardless of the condition, you have every right to experience the same feelings that we have about this illness - apprehensions, rage, self-pity and bitterness - these are normal.
It may take you a little while to accept the situation, but it will happen. Be open and honest with your parents and the medical team, both of whom should respect your need for reasonable privacy and independence. Information should be given to you at every step in a variety of ways; verbal, reading materials, diagrams and videos if available. Talk about concerns regularly to make sure that they are not based on misunderstandings which can be corrected.
The reality is that having a chronic illness is an extra challenge for you to face. Speak to your health care provider about support groups especially for your age group. Professionals who work with teens in health settings are becoming more aware of the benefit of maintaining peer support. Parents report that psychosocial problems increase as school absences increase. A fear of rejection may be associated with absences from peers, particularly if the individual's appearance is altered. To this end, support groups of teens are occurring more frequently. The results show that the young people feel better able to cope with the social problems related to their illness and that these support groups strengthen their understanding of themselves and improves their quality of life.
Try to resume your old activities (with some modifications) whenever you can... hang out with friends, play sports, take music lessons, hold a part-time job. These activities should be resumed whenever possible, perhaps with some modifications to accommodate your symptoms, as these things help to contribute to your healthy self-esteem.
You are not alone...You are not different......
I wish you all of the best!!!
Peace and Blessings
04-23-2005, 03:18 AM
hey, thanks for your replies :D
cos of my lack of concentration it took me ages to read the messages lol i kept going over the same lines and thinking 'oh wait iv just read this' lol
thats why i tend to press return a little more in my sentences so when i read it back its easier to find my place, aint i sad lol
as to the college thing i am finding that a really depressed topic.
Last year i completed my A-levels which was a bad struggle but i did it! (health and social care intermediate level 1 and 2 is what i completed) and i stayed on for the second year of it in 6th form but i wasnt enjoying it and at that time we had early exams and i was in a flare and so i was down and i quit...
...so at the moment i arent working cos my docotr said she didnt think i would be able to physically work at the moment.
so i put my name down for a recognised volunteer group in my area he just got me a placment when i had a light flare up so we agreed to pospone it.
i have looked through booklets of courses for colleges but the things that intrest me i have been told will be too hard for me:
drama - too much physical work , i used to do this in school and totally love it but i found it difficult when i wasnt diognosed so i will do now :)
dance- i also used to dance but now i find it too difficult. so dance and theatrical courses would be too hard.
health and beauty - my friend has done this and completed all levels adn she told me that she finds it hard standing up for long periods of time while going through different beauty treatments. i have had a little taste of the course and she is right i could hardly stand the next day.
then of course there is health and social care of which i have completed 1 year of, and as i said i didnt like the second year plus you have to have a 3 day placment in a nursery as well as two days in college, and atm i just cant do a full 5 day week. (9-5)
i have shot my self in the foot a little bit as the college said i could spin it out a bit like a part tiem course but in stead of a two year course it would be turned into a 4 year course but it depresses me thinknig its taking me 4 years and every 1 else two. i dont no if any one will understand that but hey it might just be me.
by the way, im a little confused what did you mean by 'photosensitivity '? sry im having a 'blonde moment' :D no offense to other blondes :D
05-03-2005, 03:40 AM
Most people with Lupus are photosensitive. Photosensitivity means that you have an adverse reaction or response to light, usually sunlight. Typically, we break out in a rash when exposed to sunlight; how much exposure it takes to cause a reaction varies from person to person. Our photosensitivity is worsened by certain prescription drugs (sulfonamides, tetracycline, and thiazide diuretics) or herbs (St. John?s wort, for example).
Have you ever thought about an on-line college course in a field that does not require a lot of physical activity. Something in the Social Services or Political Sciences??? I have spoken with many Lupus patients who have found that on-line courses were their salvation because they could not otherwise meet the demands of regular college campus classes.
Just a Thought 8)
Best of Luck