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Discussion Starter #1
Hi Everyone

I joined last week, when my doc thought I had Lupus and reffered me to a Dermatoligist. I went yesterday and have been diagnosed with severe SLE Lupus, just waiting for the Biopsy results and blood work to come back, so that he can see how far its gone through my body. Sorry, I know very little about this. Then he is going to set up some kind of treatment plan, which invloves a whole heap of specialists.
He was suprised I was still pulling myself out of bed in the morning, raising 2 small kids on my own and going to work everyday. He said to me that I don't think I realize how ill I am.
He has so far started me on cortisone and Malaria tablets.

So far, systematically it seems to have affected my skin (its really bad), central nervous system, lymph nodes, glands, teeth, lungs. Will see what the tests say. I have already been in hospital with pneumonia out of the blue and they did not pick anything up, but doc said it's the Lupus that put me there.

Oh well, I have a lot to learn.

W
 

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Well Whisper! It sounds like it was high time you got that diagnosis. It also sounds like the doc is taking it seriously and wanting to treat you actively so that's a great start.

I hope that this means the beginning of an easier life for you.
As I'm sure you may have seen in other posts the anti-malarials (plaquenil?) will take quite a while to kick in which is why I should think he has started you on cortisone.

You will probably go through a lot of emotions with regard to your diagnosis and it's important to realise that those ups and downs are perfectly normal and that we will be here to help and support you when needed.

I'm sure you'll have plenty of questions over the coming weeks and months. Feel free to ask as many questions as you want and we'll all try and answer them as best we can.

hugs to you :hug:
Katharine
 

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Discussion Starter #3
Thank you so much Katharine

So far emotionally I am ok, I am a qualified volunteer counselor & also have an uncanny ability to have no fear. I also have been through things that to me personally are more severe than this diagnosis. I've been sick for a very long time and it's a relief to finally get a diagnosis and treatment and know that I can eventually feel better than I am right now. A few weeks ago on a Sunday, I got my parents to pick up my kids for the day as I couldn't even get out of bed.

I am so clueless to Lupus, so I am sure along the way I will have tons of questions.

I have a psychologist that I have been seeing for a while, as it is other stressful situations that I have gone through, that I think triggered the severe lupus, but I think that it has been floating around inside of me for years.

Thank you for being here, as I have no support in real life. I have to try and go through this alone. I can't afford to be ill like this, being a single mother of 2 small kids, they just don't understand that I am ill.

I'm still waiting for my results from the blood work and biopsy and on November 3, I am going to find out my "whole" treatment plan, unless the tests come back over the next few days and show something very severe. Then I will be put in the hospital, where I can't be, as I have no one to look after my kids (my parents are too old & my dad had a double heart bypass op, earlier this year).

Thank you once again for being here. It is much appreciated.

W
 

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Good grief, you sound like you're describing me with that "uncanny no fear" thing!!! eerie

Also, with the bit about having been through a whole lot else. I'm sure that it will all stand you in good stead.

Somehow I like that saying that says "we're not victims but survivors" :)

Please don't hesitate to come here any time you need support. There is a really marvellous community here, a big family really.

I'm also alone in that I'm an expat (with elderly parents too but miles away) but I am far from alone with the wonderful husband I have. There are no support groups at all around here and no-one has ever heard of lupus. My husband is great but, as far as support goes, if I'm feeling really bad, I come here where I can really explain it 100% to those who can share it (no-one who hasn't had lupus could possibly really understand) and where I can also say it in "English" :rotfl:

Katharine
 

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Discussion Starter #5
I loved your post. It made me smile.
We are definately survivors. I don't like the idea of me being a victim. I've always been a fighter and will always be.

And Lol, my thing of no fear can get me into trouble sometimes. :rotfl:

I'm glad you have your husband, it must be hard in a foreign country away from all you know.

W
 

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Hi Whisper

Wow! you sound such a strong person having to deal with everything at the moment.

I just wanted to say Hello and that I hope you start feeling better real soon.

Mrs M :)
 

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Hi Whisper,

Sorry for what brings you here but sure glad you found this forum. You will get a lot of support from very knowledgeable people here and great information too.

A good book for newly diagnosed patients is, "The Lupus Book" by Dr. Daniel Wallace. It is written in laymans terms so it is easy to understand. I recommend you buy it and learn all you can. Knowledge is Power!!!

I am pretty new to Lupus myself and I learn something new everyday. I thank the people here on this board for making this transition easier for me. I am sure you will feel the same way.

I was a single parent for 8 years before I married so I know how hard it is and what your up against. My heart goes out to you but you sound like a fighter and a feisty one at that.:wink2::wink2::wink2:

Read, learn and lean on us for support. Feel free to join us in the chat room if you see that folks are there. You will see the Chat Room option on the tool bar at the top of the page, right hand side.

Nice to meet you and hope to get to know you better. Keep us posted as to your upcoming results.
 

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Hi Whisper,

:welcome:. I hope you find the site very helpful, I know I certainly have. The people here are so knowledgeable and supportive.

I wish you luck with your blood work and biopsy. Hopefully nothing major shows up. Nobody enjoys a hospital stay. Let us know the results when you get them.

Take care,
Lazylegs
 

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Dear WHisper, You have my admiration for everything you are dealing with,but really at the moment you need time off from work if possible and to make things at home as easy as possible. It really isn't good to do so much. I had to save my energy for the children and let everything else go to pot.
It also sounds as if you should at least look into Disability Benefits. They can be a big help.
x Lola
 

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whisper,
First welcome to the friendliest and most educational site I have ever seen. It is so nice that everyone will help you as much as they can. The people here are better than doctors in a way(they listen,advice(as best as they can),pray(if and when needed),best of all they understand you and how you feel. Most have already been there at least once. Your doctor was right to put you here. Now about you start listening to your body better and plan some time for yourself. It sounds like you are very busy and have your hands full. You have to take care of yourself before you can take care of others just remember that. If you need someone to talk with there are a lot of people and I hope that you would leave me a message if you needed someone. You will be in my prayers along with your children.Again welcome to the best little world on the net.
Tammy
 

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Welcome to our site

Hi Whisper
so pleased to find you that you have found this group in your need, and also pleased to find that you have found a doctor to d/x what is the matter with you.

I see you are in South Africa. This is the good thing :wink2:about the site, to bring us together online. I am on the northeast coast of Australia, and being online is the only support I have in the so many medical events that happened in my life, as we have no knowledgeable GPs or local specialists.

Somehow we have the strength when we are responsible for our children, as I too virtually had to bring up my children alone, working fulltime, despite recurring health problems, which are still catching up to me. Now they are married and have made me a nan hooray:rolleyes:.

Reading others' problems with almost similar symptoms certainly helps, and I enjoy the Chats etc, with Moderators' suggestions. I look forward to seeing your posts, and hear how you are going -all the best.
 

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You mentioned that the Lupus has affected your teeth. I didn't know that Lupus could do that. Can you explain?

Maggie
 

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Discussion Starter #13
Wow, thank you all of you for your Welcomes.
This truly is a very supportive site and I can't thank you enough.
Sorry, it took me a while to respond, I don't have a computor at home.

Katharine, Mrs M, KarolH, Lazylegs, Lola, Tammy, Mary & Maggie, thank you, it means a lot.

Maggie, I still have not had my tests results back, but I have permanent gum disease, that no dental hygiene seems to fix, my teeth are cracking and falling out. I also develop cysts in my gums under my teeth, that cause excruciating pain. I do not know enough about Lupus yet and have my appointment for a proper treatment plan on 03 Nov, where I will get to learn about a lot of things. I will let you know what they say about my teeth. The doc says its definately Lupus doing it. I guess I am learning it can attack anything it wants to.

W
 

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Hi Whiper and welcome:)

I hope the cortisone is helping........the Plaquinel will take a lot longer.

I'm so glad you've got a diagnosis at last and hope you are feeling optimistic about the future now there will be a treatment plan.
My rheumy (rheumatologist) manages my medicines and stuff, but it is through the boards like this that I have learned to manage my lupie life the best way I can.

Rest when you can and get help if you can when you need it.

All the very best and let us know how you get on.
 

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Welcome Whisper!!!
I see many here gave you excellent advice and support. I ditto what they said!! We are survivors~!! Taking care of yourself is the best advice I can give you. Take time to rest, let other things wait.
Its nice to meet you!
 

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Welcome Whisper!

Welcome Whisper. This is a GREAT & very supportive group here. And talk about helping SO MUCH when you're going thru flareups.

You can learn so much here, too. And it's an important place to be able to write out what you need and know that we can relate or understand. And if we don't share the exact same symptom, know we can be there for you still.

Hey, like that you're from South Africa. That is very cool! Have you always lived there? Just so neat to be able to chat w/people from around the world going thru similar.

Take care & hope you feel at home here at this great site!! :)
 

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Discussion Starter #17
Hi again Everyone

Sorry I have not come on here in a while. We had our server and computors stolen.

Just to let you know what happened with my test results, they confirmed Lupus, but the doc says I am not nearly as bad as he thought. He thought I had the severest form. He says Lupus has 4 stages and I am in the second stage. My word if you feel this ill then, how must you feel if you are in the fourth stage. SLE stage.

He says I am responding very well to the medication and if I keep on at this rate, I may go into remission in about 3 to 4 months. He has also added an antibiotic. If I go into remission, I will be able to stop taking all meds, except the anti malarials every second day.

I am having a bad Lupus day today though. Feel awful and tired and my skin has gone all red, I also had problems holding fluid down this morning. Perhaps its the stress of having our server stolen catching up on me. :hehe:

W
 

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Thanks for coming back with an update. I'm glad to hear you are responding so well to treatment (must be according to the blood work/urinalysis because it sounds like you aren't feeling all too great yet).

You might have been sick to your stomach due to the antibiotic. Many of them will make me feel that way at least...

Best wishes for continued improvement in all ways!
 

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Hi Whisper,

I really hope that you start to feel better soon with treatment and that this flare you're in calms quickly.

I'm sorry to kind of go "off subject" here but I'm wondering what's with this "four stages" thing? I have never ever heard of that, never seen it anywhere, not heard any doctor refer to it... and how on earth can any doctor tell what "stage" you might be in, or how severe your disease might be from tests?

The severity of disease for many people just doesn't show up in any tests. Some people may have increased levels of something or other, some may not. For some, those increased levels don't seem to tie in with how they're feeling and may only occur AFTER they have been feeling very bad for a long time.

Maybe it is a reference to the lupus nephritis stages that were referred to in another post? Do you have kidney involvement?

Sorry, just wondering - maybe I've got this all wrong, but why on earth are we suddenly hearing of these stages??? If anyone more knowledgeable can put me right on this, please go ahead.

Katharine
 
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