[Kyphi]

Hi there - I hope Im not bothering everyone. Im 46 and have just been diagnosed with SLE. I am very frightened as all I seem to read is doom and gloom. I have two young teen age children and a fabulous caring husband but I dont think I wil ever feel well again. I have a full time job which I love but I cant see how I can ever return feeling the way that I do. Does life ever feel good again?

Thanks for listening

 

[x_claire_x]

don't feel too bad X

Hiya... I know it is scarey but please don't believe the stuff you read on the web, alot of the data is old and wrong.. life expectancy is pretty much normal especially if you are diagnosed early before internal organs have been damaged.. the trick is to get on meds that help nice and early and you will feel much improved no doubt in no time.. it is a rollercoaster, everybody has bad days but also good ones, just read this site for a while there is a mixture of people and a mixture of meds, types of illness etc etc.. alot of people are out there working without the time or inclination to come online to chat so remember that when reading the comments etc I was diagnosed with MCTD in Nov and am just 45, felt very strange for along time..thought I was done for, don't anymore though.. feel better now that it is being dealt with and yes I still get pain and tired etc etc but understand better what is happening to me..which helps me alot. I am also on meds that have made me feel better than I have for ten months, reducing the pain etc.... I send you lots of hugs and don't forget to send any questions you have our way, there is great advice and humour and good common sense on these boards...so just ask, take care, take one day at a time, and give yourself some space to sort it all out in your head... all the best.
Claire X

 

[Kyphi]

Hiya... I know it is scarey but please don't believe the stuff you read on the web, alot of the data is old and wrong.. life expectancy is pretty much normal especially if you are diagnosed early before internal organs have been damaged.. the trick is to get on meds that help nice and early and you will feel much improved no doubt in no time.. it is a rollercoaster, everybody has bad days but also good ones, just read this site for a while there is a mixture of people and a mixture of meds, types of illness etc etc.. alot of people are out there working without the time or inclination to come online to chat so remember that when reading the comments etc I was diagnosed with MCTD in Nov and am just 45, felt very strange for along time..thought I was done for, don't anymore though.. feel better now that it is being dealt with and yes I still get pain and tired etc etc but understand better what is happening to me..which helps me alot. I am also on meds that have made me feel better than I have for ten months, reducing the pain etc.... I send you lots of hugs and don't forget to send any questions you have our way, there is great advice and humour and good common sense on these boards...so just ask, take care, take one day at a time, and give yourself some space to sort it all out in your head... all the best.
Claire X

Thank you so much - your kind words really mean a lot. Im feeling very lonely (though my family are wonderful) and I really need to hear 'good / positive' things. Because Im so low Im trying to put on a brave face for everyone but its a fascade; so being able to open up here is important. Many many thanks again.

 

[sheira]

Hi - it's great that you are posting. I was diagnosed in 2006 and after a failed attempt at plaquenil kinda went into denial - stayed away from the forum etc. Big mistake!!!! I went a year and a half without drugs and my lupus hit me hard! Have just had 2nd course of Rituximab and have been referred to St Thomas' - just make sure you keep your appointments - take the drugs and face the disease!
s
x

 

[ElephantEyes]

Hi Mrs Sad -

I'm 27 now and was diagnosed with SLE when I was 20. It is difficult when you are newly diagnosed and everything seems so scary and as if nothing will ever be normal again - I just felt like I was going to be sick forever.

But I haven't been sick forever. The medications that I take now have kept my illness pretty much under control and I rarely get sick now. Yes, I still get some joint pain and tiredness and some mysterious viruses, but it is manageable most of the time and my life has followed a regular path - I've studied, I've travelled, I've dated, I work full time now. I don't know what the future hold for me, but I think I'll be okay.

A lot of people on this forum recommend 'The Lupus Book' by Daniel Wallace. I bought it a couple of weeks ago and I read it cover to cover. It is very readable and useful to refer to - I think you can buy it through the shop on this site if you are interested.

I've found this site very useful and I hope you do too. There is also a chat room where you can get instant advice and support - don't be afraid to ask about anything you are unsure about.

Take care -

Nellie

 

[Kyphi]

Thank you everyone. I feel like a real wimp - you are all so positive. Im crying all the time and I think my daughter is avoiding me (shes 13 and has never seen me like this and doesnt know what to say). I always thought I was a strong person but just lately Ive learned so much about myself - especially how wrong I was. Im really very weak at the moment both physically and mentally. My life was so full and its just all come to a standstill.
Im so glad I came to this forum - I'll keep visiting - you are all so helpful. Thank you again

K

 

[Maia]

(((hugs))) What you are feeling is entirely normal and expected. Do you remember learning about the 5 stages of grieving? That is essentially what you are going through right now, and lets face it, a lupus diagnosis does turn your life as you knew it upside down for a while. I cried too - alone in my car after leaving the doctors office - after I was given the probable lupus diagnosis by my GP.

But eventually you will adjust: you will learn about lupus, realize that all the bad things they write about lupus will NOT all happen to you, you'll gain some power from the knowledge, get your medications started and sorted out. And life will probably get back to something similar to normal with some adjustments like resting a bit more, not overdoing anything and learning to pace yourself, avoiding the sun and being diligent about sunscreen use, etc.

Best wishes and let us know how we can help even if it's just a cyber-shoulder to cry on... It will get better; it does get better for the vast majority of people.

 

[lazylegs]

:welcome: to the forum.

Don't believe all the gloom and doom. The medications we have now are much better than we have had in the past. Also more research dollars are at work now than ever before. I won't guarantee you will be the old you but it may be possible for you to return to a more normal life. I was extremely ill by the time I was diagnosed. It took time, but with the right combination of medications I was able to return to work for 14 productive years and raise a family.

You aren't alone with the tears. When the disease is most active they can just spring out of nowhere. The slightest thing will set them off. It won't always be that way though. Once you are more stable it will be much easier for you to have a positive attitude.

It will take your family time to adjust to your diagnosis. Not only your life has changed but theirs has also. The best way I have found to get through it is to just take it one day at a time.

Take care,
Lazylegs

 

[earthling]

Hi there - I hope Im not bothering everyone. Im 46 and have just been diagnosed with SLE. I am very frightened as all I seem to read is doom and gloom. I have two young teen age children and a fabulous caring husband but I dont think I wil ever feel well again. I have a full time job which I love but I cant see how I can ever return feeling the way that I do. Does life ever feel good again?

Thanks for listening

Hi Mrssad,

You've come to a great board. Everytime I come on I'm reminded of the support and compassion from fellow members. I just wanted to let you know that there are very, very good treatments out there. I was on the verge of death about three years ago - I was 35 and had a lupus attack that was brought on by severe stress at work. My kidneys almost stopped functioning, I was hospitalized, then soon after had a blood clot and then a heart attack. I was on 17 different medications in the beginning. Three years later, after cytoxan, rituxan, plaquenil and cellcept, I am much better. I'm not fully recovered, but I am so much better than when I started and know that if I am more proactive with my health I can eventually heal. But really, the treatments out there are great. Continue to ask questions on the messageboards and take care of yourself - don't stress out - count your blessings, thank God for the life that you have and the lessons that you're being taught. You will get through it and be better for it!
Take good care,
Cynthia

 

[KarolH]

Hi Mrs. Sad and welcome to the forum. I always tell folks new to Lupus to go out and buy "The Lupus Book" by Dr. Daniel Wallace. It is a must have, for you, family and friends. It is written in layman terms and makes understanding your new diagnosis much easier and not so scary.

Your in the Carolinas huh..................well lucky you!!! I have spent most of my time in New Jersey...aka: The Arm Pit of the world! :lol::lol::lol: Once my son is done college the south is calling my name.:wink2::wink2:

Join us in the chat room sometime. You will love it there as we all converse, share and support each other. This site is full of good information, great advice and people who really care about what your going through. If you would have asked me one year ago if I would hang out on some internet forum I would have told you NO. Now I think of these people as some of my best friends.

I hope you like it here as much as I do. I know your scared but Lupus is NOT a death sentence. Go get that book and read it. Take a deep breath and come here for support. You will be ok and once you get situated on some medicine you will be feeling better.

What are your symptoms and what meds are you currently taking? Are you treating with a Rheumatologist? Do you work? I no longer work and have not since April 2006. Now I take time to hang with my animals, read and maybe fit in a little gardening too. These are some of the things I could not do before Lupus so out of something bad comes something good.:wink2:

You will be ok.....................just take a deep breath and come back here often. I hope to get to know you better.

 

[Pink Pearl]

Hi Mrssad, welcome to the board. As the others have all told you, that there is life in living with lupus. You will find it is a different life than you have known before, but it is a life worth living.

I was diagnosed in 1988, but have dealt with it since I was 5. That means that I have dealt with lupus off and on for 50 years. I've had some damage to my lungs, joints, and a few additions. But, and this is a big BUT, I have had a superb team of doctors with whom I work. I am also one of those who have never had a positive ana test. I've had positive several other things, but not that. This was a big part of why I did not get diagnosed sooner.

What would I share with someone newly on this path we call lupus? First and foremost, do NOT muck with your meds. You have them for a good reason, and you will find that not following directions will backfire on you. You will not be the only one who suffers. Follow doctor's orders, take very good care of yourself. Rest when you must, eat a healthy diet, and listen to your body.

I often advise newly diagnosed people to keep a journal of their symptoms. You would be amazed how many little things we forget but are important to your doctor. If you are having chronic pain, rate it on a 1-10 scale and do so multiple times in the day. Take your journal to your appt with your rheumatologist. Go over it with him/her. If your doctor is not willing to take the time to do this, then maybe you need a different doctor. Just my not so humble opinion, having fired a few doctors myself. I am patient to a point, and if that point gets crossed, well, bye. If you are having problems with memory, then see about either taking someone with you or using a small microcassette recorder. That way, you have more than just your memory to make sure you have orders right.

Enjoy life. There is life in, with, and through lupus. Just because you have lupus, does not mean lupus has to have you. It may be a different life, but it can be a good life.
Sally

 

[Kyphi]

Hi there your all so inspirational and very brave. Thank you for taking the time to respond; I didnt expect such great support - makes ones faith in human kindness explode.
I live in County Durham - UK, but have visited many States in the US over the years - S Carolina last year.

I think Im beginning to feel a little better after reading all your posts - I just wish my 1st Appt with the Rheumatologist wasnt such a long way away. In the mean time Im eating healthily (but then Ive alwyas done this) taking some suppliments that may be helpful and NSAID's for the inflammation (and trying to protect my gut).
I will buy the book you mention thanks for the tip.

I really mean this when I say THANK YOU - youve all been such a huge help

 

[Pink Pearl]

"

I just wish my 1st Appt with the Rheumatologist wasnt such a long way away. In the mean time Im eating healthily (but then Ive alwyas done this) taking some suppliments that may be helpful and NSAID's for the inflammation (and trying to protect my gut).
I will buy the book you mention thanks for the tip."

Please be very careful with supplements and do NOT use those which claim to boost the immune system. Echinacea being one, others make this claim too.

Treatment for lupus is about suppressing the immune system, NOT activating it. You can do more damage than good by using supplements which are contraindicated for lupus and autoimmune diseases in general.
Any supplements should be cleared through your physician as there are prescriptions which conflict with supplements.
I realize you may not be on meds yet, other than nsaid. But, when you are given prescriptions for medications, there are problems with some and otc supplements.
Sally

 

[onetay]

Hi and welcome to the site. I do hope that reading some of our posts you will see it is not all doom and gloom. That is the nice thing about the site you are never ever bothering anyone here. We know how scared you are and in a matter of time we will have you laughing so hard the tears will be of joy. We are a special bunch of nuts and we take care of each other. It is good that you have a wonderful support at home. The Mods here are some of the best in the world. The have wonderful advise and are street educated in all that has to do with lupus and other related diseases. I do hope you will join us in the chat room sometime, as you sound like you would be a hoot. I hope you are doing well and feeling well too.

 

[nadiasophia]

I totally understand how you feel, its hard to deal with such a huge thing straight away. I lead a busy life now and manage to cope with most things (most of the time!) but first you have to feel better i.e. get treatment that suits you. From my experience that can take a while but it improves your quality of life no end when you get there. just be patient and work with your doctors, think positively and in my opinion thats half the battle. I wish I had joined this forum a long time ago, so well done for finding it so early on. It will help!