[jas1]

Hi guys and gals,ive just been diagnosed with SLE and heres my story.

well where do i start, its a long one, so ill bore you all with the details now! I started to feel unwell end of Nov 2008,main problems, joint ache,lethargy and a small rash on my face. Lucky im not too vain!My GP believed i had a virus and i suffered for 2 weeks to the point ( and was fobbed off repeatedly by my doctor) where i couldnt get out of bed. By then, i had a temperature,vomiting and wasnt eating. I went to hospital and was admitted, by the next day i was being told i had lupus.Now that was hard, but at least i knew what was happening.BUT! then i was given high dose steroids, unfortunately my body couldnt handle it and i was rushed into intensive care on Christmas Day. The steroids had lowered my immunity so much that i had gone into sepsis. The lupus went to my brain ( Causing seizures), lungs, heart and kidney. The sepsis and lupus began to drive each other. As a result, i had a lumbar puncture, kidney dialysis, plasma exchanges and many many other tests!I was lucky enough not to fall into a coma or be ventilated, but i was close. i dont remember those 9 days, wat an awful new year for my family. Anyway, i eventually have my whole blood volume transfused which saved my life. i spent a month in hospital and have been recovering since, my struggle ranged from learning to walk again to accepting this condition.
I find the emotional side most hard to deal with and feel a burden on my amazing husband & family. i am hoping with time this will change?
My life has just stopped and i dont feel like me any more.Though i have good days, i also have dark periods which are so hard and so unpredictable.
Anyway, sorry for the long one, it would be great to hear people's thoughts.
jas

 

[Katharine]

Hello Jas and welcome

My my, you have been through a lot, a very scary time indeed. Many people wait years for diagnosis but in cases like yours where lupus seems to appear with a bang in can be very quick.

Hopefully now, with all you've just been through, the docs will have a far better handle on your disease and be able to find suitable treatment to keep it under control.

I'm afraid I can't say much more about what actually happened to you as I have never had such a violent manifestation of the disease (and like many people am unlikley to). All I can say is that there are people here on the boards who have gone through very bad patches like that and there's a wealth of experience, support and understanding here.

I hope you enjoy being here with us and can find the support you need.
:hug:

Katharine

 

[Marshmellow]

WELCOME!!!
This is a great place for support-it's been a life saver for me and is an on going one Someone will always be hear for you
Where are you from? Hope the recovery process is going ok-this illness is so unpredictable
Love Rachel

 

[Joandublin]

Hi there Jas

Welcome to the Forum. Goodness but it sounds like you are very lucky to be still with us :worried:

What a shocking experience you have had. Some people, more likely younger people, are hit so hard with the disease from the get go that its a complete no brainer to diagnose. Others, like Katharine says, have symptoms creeping up over years and it can take a long time to diagnose.

How are you doing at the moment? What treatment are you on? I hope that your Lupus can be brought under good control for you :hugbetter:

There are some members here who have been through very scary episodes as well and if you stick around you will get to know them.

I think the emotional side is very difficult to handle, especially when it hits someone out of the blue as in your case. It mightn't be the right time now but do consider the possibility of some counselling to help you cope with this side of things. This is also a great place to come and vent about how you are feeling. You can rest assured that you will always find someone here who understands what you are going through and will be willing to support you. And the best thing is you dont have to get dressed up to pop in

You must be in a state of shock right now. Its very early days in your diagnosis and it can take a long time to come to terms with the lifestyle adjustments that Lupus can demand. Just go easy on yourself at this stage. For now, focus on recovering from your terrible experience and do whatever it takes to get well.

We have a chat room that you might like to visit. There is a link near the top of the page. If there isnt anyone in there when you pop in, just hang around for a while. There are a good few members who pop into chat and if they see you in there they will drop in and say hi.

Welcome again and I look forward to getting to know you better

Take care for now
Joan:rose:

 

[LolaLola]

Hello Jas,
I have had a severe brain flare in the past but you have certainly had a worse time than me. Also I had already pretty much come to terms with Lupus by then. You have been hit from every direction. Do not forget your brain has had a violent kick up and will take time to settle even without all the understandable emotional worries.
I expect it has been hard for your Husband. Is there any help we can give him?

I don't know if you are in the UK or where you are. If you are in the UK I would strongly advise that you make a claim for Disability Living Allowance. You may well qualify and the cash is a help. Also if you get High Rate Mobility you are automatically entitled to a Blue Parking Badge. It will be lovely if you do wonderfully well and don't need these things but as they take time to process it would be sensible to at least apply.

We are all here for you.
X Lola

 

[Ticker]

I'm not sure I would be as brave as you are my dear. It sounds just awful to be blind sided like that.

Maybe after the doctors get it under control you will be better. Sometimes they have to find the right meds that work best on you.
Take care,
Tinker

 

[cad]

Hi Jas,
Welcome to the site!
I am so sorry that you had to go through such an aggrssive and life threatenig attack for your lupus. But on the positive side, you are obviously a real fighter because you survived and are here to tell the tale.

The site really is a great place for advice and support from very knowledgable and understanding people.

I really wish you all the best for the future and hope that your health continues to improve.

Good Luck

Take Care

 

[jas1]

hey again

Hi Guys, thanks for your replies. Im only 25 and just recently married ( and from the UK), so though theres no right time for this time of thing,this couldnt have hit me any harder. However,im here and thats the main thing. In response to the posts, my husband has been amazing and im blessed thats hes mine. ( Ps im not usually the soppy type!!). Its been so hard on him and sometimes i forget that, but we are getting through it together.
It is really good to know about the disability allowance, ive got a HC1 form which may mean that i qualify for some NHS treatments, we shall see.
How do guys cope with the low energy days? i have a couple a week , i dont know how ill be able to return to work, as i dont have the type of job where i can give short notice for not coming in.

jas

 

[jas1]

hey people

Hi guys, how is every1?
just a quick question, i had a butterfly rash, which is healing and there is just some pigmentation. does any1 know if sauna and steam rooms r ok to use?
xxjas1xx

 

[Katharine]

Hi again Jas,

I think that most people here find that heat in any form aggravates their disease activity and leads to achiness and sore joints. It also makes some people feel dizzy and sick.

Extreme heat is usually best avoided in any form but that's really a personal choice. If you feel it's doing you good then why not.

Katharine

 

[onetay]

Jas,
You seem very cheery at the moment but I am sure as you said it comes and goes. Anyway WELCOME and sorry for what seems to of been a real hard time for everyone. I am not sure but you might want to ask your doctor if any anti-depressants would help stablize the emotions for you. When the doctor first said anti-depressant to me I though she had hit her head on the floor and I missed it but I have found that I am level with emotions most of the time. I use to cry for no reason other than I had a sink full of dishes or I do remember sobbing like a fool when my show was not on one night. I found these to just be a couple of things that normally would not have bothered me at all. It has gotten a lot better with the anti-depressant, not sure if you would want one or need one but something to think about. I hope you are doing well and come join us in the chat room sometime.

 

[jas1]

hmm...

Hey, yes ure right, the heat does make me a lil dizzy.no more hot hot showers. i am starting to feel less down, but i get the same thing. feeling upset for no reason, normally i am such a strong person.i feel vulnerable when i am like that. hard to explain to others y u r crying when you dont know ureself!!
ps-u will c me in the chat rooms....
xxjas1xx

 

[Smile Of Life]

Hi Jas,
I was diagnosed a year ago (I'm a 39 year old man in the UK).

Mine also started suddenly, with acute pains everywhere to the point that I couldn't move. Doctors thought it was a virus. Then my heart went out of rythm, involving a hospital stay. A second bout of this 2 weeks later in Greece meant a doctor there suspected my joint pains were causing the heart problems but didn't want to say lupus as he wasn't treating me in that country. The third time, another 2 weeks later, in the middle of the night I packed a bag, left notes for my family (I didn't want to disturb them) and called an ambulance. A rheumatologist was called and diagnosed lupus.

It then all fitted together. I'd had arthritis since the age of 13, 2 unexplained collapsed lungs, an unexplained oversized lymph gland that got removed and rashes for years. No-one ever put it all together to realise it was lupus.

But I'm on chemo, anti malarials and steroids and am near normal, apart from exhaustion and I have the same bouts fo depression as you.

It's a shock, but you do soon settle into normality living with it. So whilst it's hard for you, it will become easier, especially as the meds kick in over the coming months.

Good luck!

Duncan

 

[jas1]

past medical history

Hi Duncan, thankyou for your post.actually something that a doctor asked me today ad something you had written has really got me thinking to how long i may have lupus. Though my symptoms only showed at now at the ge of 25, at 19 i got unwell with what they sai was n acute lymphatic infection where i had a biopsy on my lymph glands, i wonder if that was the start!strange... but definately something to think about.