hello

[hot_2001]

hi my name is jaimme ,
i have just been diagnosed with lupus, this came about after the birth of my third child. Yes you heard right my third. I am having a few problems coping with lupus and keeping up with the housework as well as the demands from my eldest 6 middle 2 and youngest 13 months. My husband tries hard but doesn't seem to understand to him and all my friends i am still the person they know and love but i'm not. I am waiting to go and have some tests done to see if it is the neurological form and i am awaiting results to see if i have it in my kidneys. It hasn't been comfirmed but doctors seem to think that i was missed diagnosed with Pre-eclampsia with my middle child and that it was lupus. Good friday i suffered my first seizure and i am hoping that it will be my last, i have had really bad memory problems since then.
Would be lovely to speak to people with lupus and children to see how they cope.

[LolaLola]

Hello. I was a bit like you and had severe Eclamptic seizures with my children.
They also had problems with prematurity and later the Docs realised they had typical symptoms of a lupie Mum.

It will take you a while to get settled on meds so it may not get easier yet but you will manage. Don't worry about it affecting your children because you can't do stuff. Mine never really missed out and have grown up to understand when people are ill.

Wishing you all the best,
Lola x

[raggedyann1]

Hi Jaimme,

Welcome to the Lupus Site! It sounds like you are getting good medical care and the doctors are doing further investigation. What medications are you taking right now? Do your doctors realize how severe your fatigue is? Sometimes they will put a newly diagnosed patient on cortisteroids like prednisone to get the disease quieted down. The other medications we take to control our lupus all take awhile to kick in, especially plaquenil which can take several months.

After your seizure were you started on blood thinners? Often seizures in lupus are from APS aka sticky blood. I hope you never have another seizure again either as I have heard many ladies here talk about them over the years.

Would any of your friends be willing to come over and help you with your housework? Play with your kids for awhile so you could take an extra long nap? Sometimes those little things can make a big difference in taking care of our families.

Please feel free to post away and ask lots of questions. After your initial post it is usually a good idea to post in a specific forum like medications, symptoms, living with lupus, etc. There are many members who don't read this forum who can identify with what you are going through.

Take care,
Karen

[hot_2001]

Thanks guys it means a lot,
i think the hardest bit is trying to get my husband to understand that i have changed and that when he moans constantly that he feels unwell, that i am like it all the time. People still see me like i was before well and able to do loads of things. Raggedyann1 in relation to your questions no i am not on any medication exceplt for asprin to thin my blood, due to the aps which is slight. I have also found out that i have sjogrens as well didn't know how bad till i waved an onion under my eyes and nothing happened.

Have any of you been really bad tempered throught the tiredness, i seem to snap really easily at everyone even the kids bless them, i does upset me that i am like this as i know its not there fault. My husband just thinks i am being far to hard on my eldest but she just catches me at the wrong time every day.

Also has anyone had the feeling that they are in someone elses body? In a way where that it is not your eyes that you are looking through.

would love to hear from anyone on these points

i have been to the neurologist twice and he now wants to do a lumberpuncture more mri's and a flashing lights test. they think it could be the neurological form of lupus and i have also had my urine tested got to wait for the results. If they come back as there is a **** of a lot of protien as i suspect it will then i will have to have a kidney biopsy and an ultra sound.

has anyone had these done?

It just worries me to leave my husband with all 3 kids on his own when he doesn't really have a hand in their unbringing as unfortunately he loves his laptop and pc too much.

Any ideas on this to stop me worrying.

would like to hear what you think.

[Zoi]

Jaimme hello and welcome to the forum!

Seizures are no fun and I hope your first one was your last! :blush:

Did you tell your docs about the memory problems you've been having since your seizure? Memory problems are common in lupus, but if you've never had them before and they suddendly appeared after a seizure it might be a good idea to mention it to your doctors...

The MRI (I'm guessing brain MRI) and the lumbar puncture your neurologist wants to do might be helpful in finding out what's going on...By flashing lights test, I'm assuming you mean an EEG (often done after someone has had seizures) during which sometimes there's a turning wheel with flashing lights.

This is a link on EEGs:

http://www.nlm.nih.gov/medlineplus/ency/article/003931.htm

I've never had a kidney biopsy but I can imagine the prospect of maybe needing to have one can cause considerable anxiety. Finding out that you have a disorder like lupus can be scary too...

However people with lupus can go on to lead normal lives and don't forget that being diagnosed with lupus (even if that means having to go through so many tests...:eek:) means you can start being treated and getting treated means you can start to feel better! :bigsmile:

As for the fatigue maybe you could talk to your rheumatologist about starting plaquenil, which is an antimalarian drug used in the treatment of lupus? Like Karen already mentioned in her post it can take up to three months to work and it does help with symptoms such as fatigue...

I hope you feel better soon,

Zoi

[hot_2001]

thanks zoi

the information will come in handy although a lot of information just seems to go straight over my head.

it was great talking to you and the others last night it was the first time in a while that i didn't feel alone.
so a BIG thank you for making me feel welcome.

would love to hear from who ever wants a chat.

j x x x

[Joandublin]

Hi Jaimme

Im sorry you are going through such a rough time at the moment. It must be so difficult trying to cope with your diagnosis, your symptoms, three kids and your hubby....not to mention anyone else in your life like family and friends...

The hardest thing about this disease is that it is for life. The good thing is that over time things can change so much.

I dont have three children but I find myself at almost 50 years of age fostering a seven year old, working full time and trying to deal with a relatively new Lupus diagnosis (2 years). Its been an emotional and physical roller coaster for sure.... I actually cannot even imagine what it would be like rearing three children and having a partner as well.

I cant offer any advice really except to say that if I were you I would very strongly consider trying to sort out some space for myself. Perhaps a counselling situation where you could off-load all the problems and worries you have in a safe environment? If thats not possible financially then perhaps there might be a friend that could be a shoulder for you? Sometimes I think we underestimate our friends and think that they really dont want to know, etc. But I truly believe that if we are honest and tell our friends what we would like from the relationship then they will 'row' in. Maybe just having a separate venting space would help you through these early stages?

Its so worrying finding out that you have a chronic, incurable disease. Things might get better. Things might get worse. None of us really know. Dont think about the future too much. Try and live in today and find the support you need.

This site has been a godsend for me. Embrace the support you receive here and use it wisely Jaimme. The internet is open 24/7 and if we can help or empathise we certainly will.

Hang in there. Things will change for you and hopefully get better but please do try and think about your personal support needs. You will need them.

Loads of love
Joan:rose:

[hot_2001]

thanks joan,

means a lot. i totally understand what you are talking about, i am awaiting counselling which is connected to my doctors surgery. i have got some amazing friends that do help out one of them is fantastic, she has loads of problems herself but if i tell her that i really am feeling bad she is round like a shot helping me and the two little ones.

I have found a good response and surpport in everybody that i have met.

I have found it better to be able for the first time sice finding it all out that i have people who understand what it is that i am going through.

many thanks to all of you.

love and hugs
j