New Member - Alone and Suffering

Hi Leesha:

Welcome to our forum and I'm so sorry that you've been diagnosed with Lupus. This sure can turn our world upside down doesn't it? It was first mentioned to me when I was about your age that I might have lupus. I was 23 when the doctor suggested it. It took them 13 years more until they finally agreed that was what I had and started treating me. I'll be 50 years old in February, so for a total of almost 27 years I've had the dreaded disease.

I tell you this so that you will know that people can live a very long time with lupus. You're lucky that they've caught it early and hopefully they will get your medications right and you will go into a quiet period and not require medications.

Everyone here, gets what you're going through. Not all of us have had the same symptoms but I'd bet we all have something close to it. Feel free to ask any questions you can think of. While we're not Doctors and can not give medical advice, we certainly can tell our experiences with whatever topic you're bringing up.

I'd suggest that you keep a journal with a list symptoms you're having, list you pain levels and where your pain is located. Take photos of any rashes or anything that doesn't seem right. Learn to listen to your body and when it's telling you need to rest then do so. However, remember light exercise, a good healthy diet, and trying control the amount of stress in your life iare some of the best things you can do for yourself.

Remember no question is dumb and no question is to embarrassing to ask of your Doctor or one of us here. Lupus can affect us in so many different ways that things can get really confusing as to when to call the Doctor or not. Keep coming and asking questions, we're all here to support each other and we'll do that with you also.

Please come back and let us know what your Rheumy has to say. Let us know how you're doing and ask any questions you may have. Welcome to the forum and I hope you start to feel better really soon.

Hugs,
Barbara

Hello Barbara and Joy,
thank you so much for responding trying to figure out how this site works still!
Thank you for the advice and validation that I'm not alone
I seen my rheumatologist yesterday morning actually and they are sending me to a neurologist and to get a nerve study done. Also wants me to start imunor? Already on plaquenil, IV had 4 episodes of paracarditis since July. Its so crazy, does it ever slow down?

Thank you again, so much.
Leesha

Hi Lupie Leesha and welcome. :) I'm sorry to hear of what you are going through. I'm very near Hamilton and my rheumy is there. Who are you seeing? Do you go to the lupus clinic at Mac? That's where I go.

Everyone here is so awesome, you have come to the right place for support! I haven't heard of that drug either so I'm afraid I'm not much help either.

I imagine it must be hard for your friends to understand, especially being in your early 20s. They are likely ready to party and you are exhausted? You may want to Google "the spoon theory" it's something they could read which may explain what you're going through.

I've had to go to the General Hospital a few times for chest pain, I am always impressed with how they treat patients. I recommend their ER over the others.

Is it an EMG you are going for to get your nerves tested?

Sending you a warm hug and I'm sure the doc's will get things under control for you. It takes time and patience. ;) if you need anything let me know! We are practically neighbours! Hang in there kiddo :)

I see Dr.Legault, she's great :) my sister goes to Dr.Benson. He's supposed to be very good too.

Juravinski is good too but the General is top notch especially for heart stuff. Don't I know it about sketchy people lol. I work near the general. It's innnnnteresting in that area. You must be on the mountain lol, I grew up near juravinski. I'm out in Caledonia now.

I've been diagnosed since last November but my rheumy is still on the fence with it being lupus or something else.

Yes the appointments are exhausting! I'm still going through it all too, the testing and poking and prodding. And you are a mom to a 2 yr old! You must be so tired, I remember when mine were young. My babies are all taller than me now. Make sure you get the rest you need to deal with all this :)

My real name is Joie (pronounced like joey) its french for "joy" :) easier to type too I reckon!

Dr Legault is young, compassionate and inquisitive. I'm very happy with her as my rheumy. Actually, not knowing 100% doesn't bother me so much anymore. I'm being treated and watched carefully so I'm at ease with that. My symptoms are never brushed off or ignored and that makes a huge difference :)

My sister has many of the same symptoms as I do, her doc is leaning towards an MS diagnosis but it's still early days for her too.

I have four kids and only gave birth to one which is a pretty sweet deal! My son is 15, my daughter (adopted) is 12, my stepson is 15 and my stepdaughter is 18. They all make me incredibly proud :)

I hope you have an easy day today! :)