[Jules123456]

Hi ya everyone
Well I joined the forum quite a while and did a couple of posts but after my results came back negative again for Lupus I started to think that I was talking myself into having something I haven't.

To cut a long story short after feeling much worse the last few weeks with new problems as well as the old ones I went for some blood tests that needed to be done for the hospital and I saw my GP before the blood was taken and he added the Lupus test to the list of what tests needed doing

I went to the hospital yesterday and the Lupus test came back positive this time. The thing is it has left me feeling really confused with my emotions. You want answers to know why you have been feeling so rotten in my case for the last two and half years and you are pretty sure that it is Lupus but now I have been told I was right I don't like it one little bit. I am relieved that now I do have answers and I can start proper treatment instead of stabbing in the dark at what may work or give some relief but I think I am a bit scared as well of what happens from here on in. I know that Lupus affects everyone differently but maybe that is the worrying bit part for me you don't know what to expect from the future, that things will get better, get worse or stay the same and of course no one has the answer to that one

I have been trying to talk to my husband about how I am feeling but I may as well talk to the wall as he changes the subject everytime I speak. I just wondered if anyone else had felt this way when they got their results even though they suspected that Lupus was the problem.

I have been given immune suppresents, steroids, anithistamine and something to protect my stomach I think from any side affects of the immune suppresants so all a step in the right direction and of course I can do list of questions for when I next go back to the hospital Thing is they didn't even as much as give me a leafltet about Lupus but I know there is lots of good advice on here.

Many thanks in advance for taking the time to read this message

Jules
X

 

[LolaLola]

Dear Jules,

Everything you are feeling is totally normal! Even down to your Hubby's attitude. They do go into denial, mine dreamed of finding a cure in the Rainforests for me!

You will need your friends here,but be tactful so Hubby doesn't feel excluded.

From my own experience, you will get over your current feelings but it is not a smooth process, sometimes people can still catch you on the raw.

Regarding your worries about the future, even these tend to subside. I don't know if you have young children, if so that brings extra responsibilities, but mine grew up relatively unscathed even though I am pretty ill sometimes.

Best of Luck,
Here if I can help!
x Lola

 

[dixy]

hi Jules

yep u go through loads of wierd feelings and can drive your self mad at times. Im lucky my hubby is supportive.We were on the wrong track checking out all the horrid skin diseases and told it was vasculitus never heard of that either. Never being one to B ill. Came as a slap in the face shock. In planet dixy I thought take a magic pill b sorted how wrong could I have been.:worried: Well b positive u have dx now and can work out suitable meds to keep it in check.

Big gental hug

dixy

 

[Jules123456]

Oh wow, how fast was that, thank you both for your replies. They have really helped bless you both.

I do have children, identical twin girls who were ten on Monday, both very hyper and both on Ritalin but they are my world they are the most gorgeous little girls (well not so little anymore!) anyone could wish to have and I love them both to bits. Hubby doesn't help out much so that is another worry

I have never really been ill as such in the past either and I get really irritated by the fact that I can't always be like was, I just haven't time to be ill :lol: My lot keep me on my toes. I think you have hit the nail on the head that I was hoping for someone to say right this is what you have, this is the tablet to get shut of it problem solved....bye next patient please!!

Thank you both again it means such a lot to talk to people who understand how you are feeling I know that I am going to be a regular visitor here.

Jules
XX

 

[Katharine]

Hi Jules and welcome

I too can identify with every word you have said (except for hubby - I have one of a very rare breed).

It is so odd, we're almost rejoicing that finally we've been taken seriously, then the reality hits. However, I think here you have every reason to remain very positive. It is no quick fix as treatment takes a while to be settled and sometimes is a matter of trial and error with regard to what suits who BUT many people do go back to normal/near normal activities in life. Of course those people are far too busy running around and leading their lives to be posting here but they ARE out there.

Most of the people who post here are the ones who are "not yet diagnosed", "newly diagnosed" or the rarer more severely affected people who have ongoing problems.

Although hubby has never been in denial, I was very careful not to burden him with every detail of my illness and how I was feeling. He's not daft, he can see if I'm OK or not and I came here and read and offloaded when I needed to. The chat room was a great help to me in the beginning as well.

However things pan out for you, we'll be here to help you on your journey as much as we can and everyone here has that implicit understanding of what you're going through.

hugs :hug:
Katharine

 

[x_claire_x]

Hiya Jules.. yep it sure is a topsy turvy time... I am still adjusting to my diagnosis last Nov, have the odd day when I feel really naffed off that I can't get my old self back, but also relieved that I can start to get some help with the joint pains etc etc etc.... give yourself some time to adjust and be kind to yourself. I am sure your hubby is worried and they tend to shut off when they feel like that. Don't forget to ask any questions you need to here and take one day at a time.
Claire X

 

[alimonkey]

Going through exactly the same - my partner has barely spoken to me about my illness, and is burying himself in decorating which in one sense is great as I want my home to look nice, but he's not spending time with me when I need support. And because he's doing stuff like that, then I have to cook and clean and do the laundry and quite frankly its killing me, I'm in so much pain and am so tired. We need help and he won't accept it. Added to that I'm emotionally tired and tearful as I'm still coming to terms with my diagnosis - it's a week ago since I was given the news and it wasn't exactly delivered well. I haven't started medication I have to wait to see my GP after the rheumatologist has written to him to inform him of the diagnosis.

Sorry that's me twittering about myself, but I guess I just wanted to let you know you're not alone. You're going through the exact same things as a lot of others. It's a sense of relief that you have that diagnosis, that you're not going mad, that you can get some treatment, but also frightened about what might be in store. I've just started having counselling, it's a free service offered at work, hopefully it will help me deal with it.

 

[pollianna]

Hi Jules, same thing here. I haven't seen my daughter for three months, just got diagnosed 3 months ago. She refused to acknowledge there was anyhting wrong with me for yrs and tried to bully me into acting well. I guess it was all too much for her to deal with. I went through all of the grief stages after diagnosis. Luckily the Plaquinel is kicking in. I still flare but am more functional than before. Keep coming here and talking to people who are in the same boat. Give the hubby time to adjust? I bought the Lupus book from Amazon second hand for about 3 pounds incl postage. maybe if he read some of it it might help?

Hope yr feeling a little relief with the meds soon xxx

 

[keebler]

Hi Jules,
Welcome to the form, it is nice to meet you.

It is a roller coaster ride of emotions when you are told you have lupus. I knew what I was getting into, because my brother was diagnosed with lupus a few years early.

Give your husband time to adjust they go threw the emotions like we do.
Love,
Lyn

 

[Jules123456]

Oh thank you so much for all your replies and letting me know that I am not going mad with the way that I am feeling :rotfl:

It is suprising how people react to you not being well before and after you get the positive results isn't it? You get the oh no ill again people, the people who understand, the pull yourself together and get on with people and the ones who think well there must be a cure you are lying you have this forever. I think the worst ones are is it catching or is it like HIV Pollianna I do hope that you can mend the bridges with your daughter if that is what you want to happen.

Allimonkey yes you will get a nice decorated house but just a cuddle would help wouldn't it? I can totally understand where you are coming from. I suppose they are worried and scared too and my husband is not great with words in the first place and opens his mouth to change feet.

I have got to say since I told my hubby I have posted on here he has been better knowing that I have people to talk to who may have answers to my questions or advice on things because they are going through the same.

Once again thank you all very much, hope you all have a great weekend

Lots of hugs
Jules
XXX

 

[onetay]

Jules,
Hi and welcome back to the site. I did want to say you were not the only one that got the news of lupus, so did your husband. Everyone deals with things differently. I am sure he has at least a thousand questions of how this will effect his and your life with no where to turn. You are right it is different for everyone but in the dark there are others just like you out there. I have found a couple on the site. I have to tell you I did not get a leaflet either. I did not think I had lupus as I did not know what lupus was till the words came out of the doctors mouth. I still did not know what it was, I just asked for the pill to get rid of it so I could get on with my life. Then it came, there is no cure. There is treatment for the symptoms but no cure. So then I turned to who gave this to me. The reply was even worse no one gave it to me, I had it all my life and something triggered it to wake up in my body. Lovely so I was sick all my life and did not even know it. I hoped on the net and did a search that left me in tears and wanting to get a will in place like yesterday. Much to my surprise it has been 17 years with limited symptoms until the last couple years. I got to raise my children and love a couple men in my life and work as if I was fine for most of my life. There are two things you can do. You can sit around and wait for things to happen to you or you can do what most of us do and that is take each day at a time. We do what we can when we can. It is like a bad tooth you can't fix. Some days it is fine and you don't know that it is bad and other days it kicks you in the bottom. It will take time to adjust to the news and even more time to learn to live with it. I do hope you are doing well and feeling well. In some small way I do hope that this helps you.