[michuk]

hi everyone!

Well this is all very new to me! Just turned 36 and I have been diagnosed with lupus nephritis, which is in my kidneys. Had the biopsy last week, not very pleasant, but glad that the doctors have finally taken notice.

I am the steroids prednisolone, mmf, lansoprazole and alendronate now. My body is not used to so much medication! It all feels a bit strange.

I am trying to get to terms with everything, as I am wiped out and so tired. For the last 4 years doctors said I had RA, until last september when my flare ups were getting worse and I felt tired and ill all the time. Finally, they tested for lupus, which came up positive.

I have had to stop work, as my job was very physical and lots of wear and tear on my body, I worked as a spa holistic therapist. I have decided to take a break and try and get myself back on track and get healthy and stabilise my condidtion with all these new drugs. I am having a re-think on the career path and will probably take it easy.

It really has knocked me, as I am so used to running around, working and getting things done. I am now just sitting down loads!

I would really value some advice about coming to terms with it all and any medication advice. I will be lowering my steroid dose soon, so hopefully, not feel so wobbly all the time.

Looking forward to hearing about your experiences and hope that we can all help each other.

Best regards

Mich

 

[Katharine]

Hello Mich and welcome

I'm sorry to hear what brings you here but glad that you finally have a correct diagnosis and are on the path to better treatment.

Getting used to the idea of having a chronic disease does take a while - I wonder do we ever get truly used to it - but one of the best things to do is to take each day at a time, especially in the beginning and when feeling ill. As you have stopped work for the moment that will be a little easier for you to do. Taking time for yourself and relaxing as much as possible all help a lot, both with the mental side and the illness itself.

It can be rather "sursprising" to find ourselves taking so many medications and I often wonder if people can't hear me rattle as I walk by - apparently not :lol: or they just don't dare say anything. I'm sure you know though that those meds are essential and that you really must take them.

Many of the people here on the boards were very active before they got lupus and we all understand how hard it is to have to rethink life even if it is only for a while so that meds have time to work but it is important to know that, even though it can take time, you should feel a whole lot better when you are correcvtly treated.

I'm afraid I must dash - probably rambled nonsensically there but wanted to say hi...

Katharine

 

[sheila t]

Also a BIG WELCOME from me. It is hard dealing with the Lupus at times, even for me, especially if you been so active. I been dx now 20 years. I am also on alot of medication. If you feel like a chat anytime. drop me a PM or catch me on MSN...

Sheila

 

[Karen Elizabeth]

Hi Mich

So sorry to hear how Lupus has forced you to make changes to your life. It is so hard to realise the future is not going to be just as we planned!

I was dx in August last year and have been on Plaquenil for 5 months now. Although I feel a lot better in that my joints don't hurt so much, all the aches come back if I over do things - and that doesn' take much these days!

Like you, the fatigue seems to be the hardest to cope with. Like you, I like to be busy and don't find it easy to stay still. Like you, I am having to discover how to live differently.

The wonderful thing about this site is that everyone is experiencing the same thing. Most people here had a life that was vastly different before Lupus. IHowever, it is great to read of some who have been suffering for years yet have found contentment with the life they now have. That's what I'm praying for!

It is the most repeated saying, but the most true, like Katharine says, take one day at a time, and I believe life will start to take a different form. Someone once told me that the word for 'crisis' in chinese is made up of two words - 'disaster' and 'opportunity' (anyone else heard this?). Perhaps this is an opportunity for us to develop a new lifestyle. One where we are less busy and have more time for people. It is rare to find people in this busy world who know how to be still. Seems that is being forced on us!!!

Sounds like you are finally getting good diagnoses and the help you need. Do you have a good Rheumy? I have a good man who seems to have time to answer all my questions and appears to be methodical in his treatment.

Take care xx

 

[greenhaggis]

Hi there Mich and welcome to the site!

Sounds like you are really having a good bash at getting the Lupus under control with meds and a major change and outlook on your life!

Nice to meet you!

 

[lazylegs]

:welcome: to the site Mich

I hope you will find the site informative and supportive. We don't all suffer in the same way but if you have a question or concern most likely someone will happen along and be able to help you.

A Lupus diagnosis is a life changing event. It is normal to mourn what once was, but that does pass. It took time but I finally learned to take things one day at a time. That doesn't mean I don't make plans ahead, it just means nothing is engraved in stone.

Learning to listen to your body is important. Even more important is not to ignore what it is telling you :lol: Rest when you need to. Push away those niggling doubts that maybe you are just being lazy. You aren't, rest is just another part of your prescription to help you feel better.

Take care,
Lazylegs

 

[onetay]

Hi and welcome to the site. It is a big life style change once it all hits you. You have to learn to listen to your body and to adjust constantly to what it is saying. If you do that than lupus with medicine and medical care can (most of the time) be managed well. That does not mean that you will return to work just that it can be handled.

Medicines are trial and error. You have to keep going until you find what works for you the best. I would consider all the side effects when trying to find the right one also. I encourage you if you are not working and can't for awhile to file for disablitiy and see if they can help until you adjust and come up with a new plan.

I do hope that you are feeling well and doing well.

 

[KarolH]

Welcome to the boards Mich.

You have been given some very good advice from the others here. Be patient with the meds as trial and error is common until you find what works best.

Join us in the chat room sometime and hope to get to know you better.:wink2: