[Niamh]

Hi everybody I'm Niamh, I'm 15 and i've recently been diagnosed with SLE.
I'd had aches and pains from around Christmas time (2008 ) and after a few months I consulted with my GP, after some blood tests it revealed my Rheumatoid Factor was high, he then referred me to a Rheumatologist who diagnosed me with rheumatoid arthritis. I was put on a course of anti-inflammatories but no effect was taking place. A few weeks later I got really ill, I was running temperatures of 39 degrees, nausea, vomiting, diarrhoea, extreme fatigue, light-headedness/fainting and of course had a "mysterious rash on my face".
My rheumatologist's nurse came out to my house to give me a steroid injection, noticed my symptoms and suggested I go to the hospital right away.

I spent a week in hospital, being pumped with fluids and anti-biotics and they didn't know what was wrong with me until my rheumy's registrar noticed the butterfly rash and suggested Lupus. That started the ball rolling.
A nurse also noticed my blood pressure dipping whenever I stood up, I was then sent to cardiology for a week where they discovered I had type 2 heart block.
I was discharged after about 7 seperate doses of steroids (IV 250mg/500mg)

It's been nearly 3 months since then. I've been put on meds (Plaquenil 200mg and for a short period Prednisolone 20mg) and I am improving. I also have an appointment this week with cardiology to study my heart further.
I've tried to gather as much information as I can in the past while, surfing every Lupus website and purchasing books for women with lupus - I'm trying to learn as much as I can as I will be stuck with this new friend for the rest of my life.

I feel so scared and troubled when I hear of other women's stories. One thing I've learnt about lupus is that no two cases are the same, but I can't help feeling extremely scared about what my future holds. I am only 15 and I fear deeply that lupus will interfere with so many hopes and dreams I may have had for the future.
I don't know what course my lupus will take - whether I'll have regular flare ups or near to none, whether certain organs - particularly my heart - will be affected, and whether I'll live the same lifespan as those growing up around me.
I have a really important schoolyear about to begin, and I don't know how I'm going to cope with coming to terms with my new illness and studying for exams which I look on as extremely important. I'm not sure why I started this thread, I guess I'm just looking for reassurance; do you all feel the same way? I can't imagine that I'm alone with these fears.
I have read some of your stories on this message board and so many of you are battling this disease so well and are truly an inspiration to me, so I thank you for that.

 

[keebler]

(((Niamh)))

First of all welcome to the site.

Hearing that diagnoses it causes a roller coaster ride of emotions. There is a lot of curves and turns dealing with lupus. The members here are willing to share their experiences dealing and giving support. There are members here from all over the world.

Please remember it takes 6 to 9 months for the plaquinel to kick in. There are other meds that you can go on. But I am thinking they want to get your heart checked out first?

Some people with lupus don't visit the board. They are to busy living their life. Keep that in mind when you are looking up info. on lupus. Also remember when you surf the net that some sites are not current with today's information. Look at the dates that the information was written.

My heart goes out to you, you are so young to have to deal with all of this.:hug:

Learning to listen to your body will be a huge help to you. Pushing threw fatigue will only result with more pain and fatigue. Stress = pain too. Use sun screen when going out.

We all go threw the emotions that you are having. We know and understand how you feel.

How are your parents doing? Our family members go threw a process in dealing with a love one with lupus.

Love,
Lyn

 

[lazylegs]

Welcome to the site Niamh.

You were very fortunate to be diagnosed so quickly. Hopefully by starting treatment so soon the disease will be under control in less time.

We understand your fears. Post diagnosis is an emotional time. What-ifs just keep invading your thoughts. My suggestion for you is to try to take one day at a time. Learn to listen to your body and follow it's advice.

I wish you luck with your cardiology appointment.

Take care,
Lazylegs

 

[x_claire_x]

Niamh, It must all be a bit overwhelming at the moment, you have been started on some good meds and they are onto you early which is fab news... the earlier intervention the less damage to your body... so although it is hard knowing the disease is there, it is better to have that knowledge to look after yourself better.. and to know there is a cause for all those feelings you have been experiencing. There is slowly more awareness around Lupus and I think it will be an interesting decade for us... in Daniel Wallace's book on lupus he sees potentially big strides in improvement for treatment and life quality too. Like others have said an enormous amount of people are out there living their lives too busy to join a site etc, so remember that when you are reading the threads...also be careful about internet data.. it is old an inaccurate, really got me down reading that when diagnosed. There is far more info on this site and with some humour, wisdom and kindness. You have a lot on your plate so take it one step at a time and plod through it, try and rest when you can, let your body catch up. I am glad you are feeling a bit better now... long may it continue.. I certainly feel better this year than last year before diagnosis. You take care and take your time... I send you lovely thoughts and wishes.
Claire XX

 

[Pink Pearl]

Hi and welcome to the board.

I must concur that you were lucky to be diagnosed as early on as you were. I relate to your fears, and I am so sorry you are battling heart involvement. Positive thoughts for your visit with the cardiologist.

You are a strong young woman to be able to research as much as you have and to accept that you are needing to learn as much as you possibly can. One caution: anything printed over 5 years ago may be out of date. So, take the information there with caution as it may not apply any longer. Medical knowledge for lupus is gaining by leaps and bounds. We only hope that treatments for it will soon grow as fast.

You have been given a lot to deal with at your young age. Something to remember, just because you have lupus, does not mean that lupus gets to have you. There is life in, with, and through lupus, so try to not let yourself feel down because of lupus.

Try to keep yourself up with your friends. It is a delicate balancing act to take care of your health while taking care of your need to be with friends and doing normal teen "things." Talk to your closest friends about your challenges, and what you have to do to survive.

One of the things often suggested for new patients is to keep a symptom journal. This helps you to sort out the things which you need to discuss with your doctors. If you are having pain, rate it on a scale of 1 to 10. For most, it helps to take the journal to your doctor appts and go thru it with them.

When I was going to college, I was advised by my counselor to let my teachers know about my health issues. You may need to talk to your teachers as well. If need be, enlist your mom or counselor to help you with this. Any problems should be immediately relayed to your parents and/or counselor.

Take care of your health and good luck at the cardiologist's visit.
Sally

 

[little pig]

hi niamh, i hope you are okay and not too dismayed by your diagnosis, i'd like to offer a glimmer of hope for you that your life doesn't have to stop. i started showing signs at 10, very bad migraines, i used to pass out with the pain and eye involvement, numerous visits to specialists who said i had growing pains and/or it was all in my head. my mum perserverd and i was diagnosed at 14 with RA, however the treatment never made an impact, i struggled at school, physically more than mentally, just getting up from a chair was impossible. luckily, and it might sound strange, i had a DVT at 17, i was seen and diagnosed within 3 months. But dont let this dishearten you, this was 22 years ago and things have moved on so so much, at that time the only specialist hospital was st thomas's in london. anyway, i have gone on to study for a degree, got a good grade and im now in a job that i love. i hope this helps a little? im now nearly 39 years and its been part of my life for so long, i have days where i just want to rest, but doesn't everyone??? take care, and all the best for your future

kerry:wink2:

 

[debatat]

Hi Niamh and welcome to the site. I am sorry for your lupus diagnosis, that is a lot to cope with at 15. It is good you were diagnosed so quickly and that they have started you on treatment. It is such an emotional time following diagnosis as you wonder what it all means. This site is excellent for info and support. There are so many meds they can treat you with and lots of people with lupus manage to live a normal life. Not everyone experiences all the symptoms. Learning to pace yourself and listening to your body can help a lot.

I hope you have a lot of friends to help you through this time, as having fun is important. It is an important school year and I hope things go well for you.
I hope your cardiology appt goes well this week.

Take care

Deb

 

[Niamh]

First of all, thank you all so much for your kind words - they've really comforted me. I never even thought about information I find on the internet being out-dated - I'll look out for that.
I realise I am extremely lucky that I got diagnosed so quickly - even though it didn't feel like it! It felt like forever when I was so tired all of the time and could barely move and nobody could understand why.
That's another thing I'm going to have to work on - my friends don't seem to realise how serious SLE can be.. or how serious I'm taking it. I'm being put down whenever I refuse to join in with certain activities if I'm not feeling up to it. And whenever I try to explain it to them, they get bored and change the subject.
That's why I'm glad I found this site, so I can express how I feel to people who understand what I'm going through. I've e-mailed an organisation near me who appears to hold meetings for people with lupus, but I haven't yet gotten a reply.

How are your parents doing? Our family members go threw a process in dealing with a love one with lupus.

Not too well initially. My mum took the news really badly. She couldn't handle it very well whenever she saw me at my worst - she wasn't strong enough to stop me from falling if I fainted and that just killed her. After I was discharged from hospital and went back home I assumed things would go back to normal, but she was sleeping all the time - she suffers from vertigo and it got worse - the doctor told her she was going through a bout of exhaustion, considering she, my sister and my dad took it in turns to stay the nights with me in hospital.

It's really tough seeing the effects that MY body and it's malfunctions have on my family, it makes me feel guilt ridden that I put more pressure on them and they feel the need to tiptoe around me at the moment as the Prednisolone dosage I'm on is messing with my moods.
I know there's nothing I can do about it and I should feel grateful that they're doing the best they can to support me, but I guess all I can do is show them that I'm still capable and they hopefully won't feel as much stress.

Again, thank you all so much for taking the time to reply
Niamh, x

 

[Claireb]

Hi, sorry to hear of your diagnosis. I am newly diagnosed too and share your worries and concerns. You seem to have had a very difficult time recently and I can understand you feeling concerned for the year ahead, what with your exams and all. I am new to this site but have already found it a god send. I am sure you will too. There are some very kind and helpful people on here with an expanse of knowledge about lupus. I personally can not advise you but just wanted to say hi and hope things improve for you very soon.

Claire XX

 

[macfamily53]

Welcome Niamh

I am so glad you found us here on the lupus sight.It is always scarey hearing about serious illnesses like lupus.I am just so glad they have you on plaquanil and in time it will make a huge differance in the fatigue.
I am sure it is effecting you mum sweety.You could have headache and mum would worry about you as it is just what us mums do.She might need to read some information about lupus and then she might not be so worried or talk to your doctor about it.
This is such a wonderful caring and supportive place and the people are beyond helpful in here to the pint you get to be best friends with them.I think part of it is because we can understand just about everything they are going through with having lupus.I sure am hoping you have an appointment with a rhuemetoligist as they are the ones that seem to know more about lupus or should anyway.There are a lot of younger people in here also to help support you.Please let us know what you find out about your heart.You are in good hand in here :wink2:.

Tammy

 

[little pig]

hiya niamh, unfortunately this may be the time you will find out who your true friends are. people have passed in and out of my life, either they are scared, not very understanding or downright selfish. but....i have a few friends who ive gone to school with and totally understand, who wait for me to suggest nights out etc. please don't feel guilty for being ill. take care

kerry xx

 

[Katharine]

Hi Niamh and :welcome:

I don't have much to add to what the others have said. We certainly do understand your concerns and the problems SLE brings to our lives and those of our families.

I just wanted to add one thing. From what you have written you seem to be a very well balanced and mature 15 year old. I'm sure that that will stand you in very good stead in learning to live with this disease and still live life to the full.

hugs :hug:

Katharine

 

[livvalivva]

Hi Niamh
I havent been on this site for quite a while but saw your post and felt the need to reply. I was diagnosed with lupus at age three and am now eighteen. I understand how hard and challenging it is to grow up lupus.
Having your friends not understand can be the hardest thing, alot of my friends struggled with me being sick seeing me able to walk one day then on crutchers the next. Trust me you find out who your special friends are. Alot of the time its the ones you dont expect. I have found it hard to open up to them at times because they dont really understand how much pain you are in. Just wanted to let you know any time you wanted to talk i am here
x Olivia

 

[Kyphi]

Hi Niamh, I just wanted to echo Katherines comments. You sound like a very well balanced young lady and that will give you the necessary tools to deal with your diagnosis. I have a daughter your age so I can imagine how difficult it could be for your parents and siblings. I found that I had to 'educate' those closest to me as like me they were frightened and were reading a lot of the innacurate and outdated info on the web; you may find this helps you too. Im newly diagnosed (June) and at that time I was very frightened and thought that Id never get back to the job I love - I felt so ill. I start back to work on Monday and continue with my Masters degree. I too are having heart and brain investigations and yes its VERY scary, but as others have said its been caught early and therefore can be managed.
Again as someone else has said I think the next few years are very hopeful for lupus sufferers, but in the mean time carry on with your great youthful optimism, intellect and maturity. I hope (and quite sure) youll start to feel better soon. :thumbs:
K

 

[Niamh]

unfortunately this may be the time you will find out who your true friends are. people have passed in and out of my life, either they are scared, not very understanding or downright selfish.

Yeah, I've tried my best in the past few weeks to try and exlain SLE to my friends but none of them really seem to understand - but hopefully once I come to terms with it they'll soon follow.

I'm just back from my cardiology appointment - they were worried as my ECGs showed an irregularity in my heartbeat and an echocardiogram suggested a hole in my heart, probably there from birth and usually it wouldn't be a problem in a healthy body but they were concerned as my lupus was an added complication - I had a bubble contrast test/echocardiogram, where they inject you with saline but let a bubble go through and watch your heart on a screen. The technician said he's fairly confident that I don't have a hole in my heart, just a thinning of the membrane that seperates the right and left side of the heart.

So that's some good news! I've a rheumatology appointment on Monday aswell so I've got that to 'look forward to'. But at least for a while I can stop worrying about the cardio side of things and concentrate on the lupus.

Thanks again all of you - it's great having people to talk to who understand what I'm going through
Niamh,x

 

[x_claire_x]

Hey.. all the best for your appointment on Monday.. let us know how you get on and remember you know your body better than they do XXX
Claire

 

[keebler]

Hi Nimah,

I had a bubble echo done a few years back. It was interesting you see the bubbles in the heart. I didn't have a hole either.

Just a word of caution though. I had a tech tell me everything was OK but it turned out things weren't. I don't know where you are from but here in the US techs can not give out that information. We have to go back to the doctor and get it.

Take care and good luck on Monday at your rhumey appointment.

Love,
Lyn

 

[oesa]

HI Nimah. Just wanted to add a quick welcome.

I was diagnosed with SLE when I was 14, and I'm 37 now. I also finished university, spent some time travelling, and I now work full time in a job I love, so SLE doesn't necessarily mean the end of your dreams. You will likely find that some of your friends will fall by the wayside, but you'll find new ones as well, and really, isn't life like that anyways?

My lupus has had ups and downs, and we're all different, but once my initial flare (which was a doozy) was brought under control I've been mostly in remission. It took a while for them to figure out the right combination of meds for me - back then some of the drugs which are now standard options were "experimental". The therapies have come a long way since then, and are getting better all the time.

So welcome, and good luck at the rheumy appointment.

Lisa

 

[Niamh]

Had an appointment with my rheumatologist on Monday - they're checking my blood for high lupus activity as my hair is falling out and it doesn't seem to be due to the medication i'm on.
The whole hairloss thing is kind of heartbreaking for me - the only part of my body I used to be happy with was my hair - especially considering I'm starting back at school soon and I'll be stuck in front of my peers nearly 40 hours a week, and everybody knows how horribly insensitive teenagers can be.
I've been massaging solid coconut oil into my head as often as I can, and keeping it on for as long as I can but it doesn't seem to be having any positive effect as of yet. Does anybody else have any suggestions that could help prevent hairloss?

Niamh x

 

[KarolH]

Hello and welcome to the boards. I am sorry I am late to welcome you but I was on vacation in Florida when you joined and somehow missed your post.

I am sorry for the reasons that bring you here, your so young, and yet I am happy that you found a place to hang your hat. You will love this board and the people are so supportive. I do hope you get your Lupus under control soon.

As for the hair falling out I do not have any good suggestions for you. I am having the same problems too. I wear my hair very short but it is severly thinning all of my head now. I am actually thinking about looking for a good wig.

I have tried medicated shampoos, not blow drying my hair, cutting down on styling products, going longer in between dying it, etc.....nothing seems to be helping me. My husband tells me that I now have less hair then him and to that I tell him...."Thanks for your vote of confidence"!!!:lol: He is 10 years older then me but I always remind him that even with less hair I am still better looking then he will ever be!!!:wink2::wink2::wink2:

I do wish you well in getting your Lupus under control and good luck starting back to school. By the way, my Nana is from county Derry and I have cousins that live in Magherafelt and friends in Belfast. Ireland is my dream and hopefully I will be living it next year and able to finally see it and meet people I have never met. I plan on staying about 4 weeks.

Who knows, may just like it so much I will never come home.:lol::lol::lol:

Keep us posted as to how you get along. Nice to meet you and join us in the chat room sometime.