New Member - Alone and Suffering

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lupie-leesha
Regular Member


Date Joined Oct 2014
Total Posts : 25
   Posted 10/8/2014 11:26 PM (GMT -6)   
Hey guys!
My name is Alicia I'm a 22 year old from Hamilton Ontario, Canada. IV recently been diagnosed with SLE and its definitely kicking my ass. I don't know much about it yet and I'm feeling so alone! IV been having so many complications and medicine changes, anyone I talk to seems to not understand. A friend told me about this website and I'm really hoping ill be able to find some people who can relate to me.

Please reach out, I could really use some insight.
Thanks in advance blush
Take care everyone
Leesha

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/8/2014 11:43 PM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/9/2014 12:46 AM (GMT -6)   
Welcome to the forum from the peanut gallery. ;-D

It's scary when we're first diagnosed, but it's an answer to all of the crazy things going on with our bodies.

This is a good place to vent, ask questions, and get suggestions. Like Barbara said, we're not doctors here, but someone's bound to be able to relate to something going on with you.

Check with your local hospital for support groups in your area too. I go to a chronic illness group sponsored by a hospital. I also see a therapist who deals with chronic illness people.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

lupie-leesha
Regular Member


Date Joined Oct 2014
Total Posts : 25
   Posted 10/9/2014 1:48 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/9/2014 2:08 PM (GMT -6)   
I'm not familiar with that drug.

I've never had pericarditis either. My lupus seems to be at pain everywhere, fatigue, and skin reactions.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/9/2014 8:00 PM (GMT -6)   
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 :)

lupie-leesha
Regular Member


Date Joined Oct 2014
Total Posts : 25
   Posted 10/9/2014 8:15 PM (GMT -6)   
Hi acquiesce!
I do! I see dr. Matsos, who do you see!?
And yes its super hard for anyone really to understand even my boyfriend and family.
I'm not much of a party go-er anyways! I'm a mommy to a two year old princess! So she takes up 99% of my time.
I love the spoon theory, its very releasable.
General is a great hospital a lot of sketchy people there though. I like jurvinski
I'm not exactly sure what the test is all I know is he said nerve study, an MRI on my brain and to see a neurologist. All the appointments are exhausting never mind the lupus! Haha
How long have you been diagnosed? Is there a name I can call you other then acquiesce??

Warm hugs back, talk soon!
Leesha
Dx- Lupus, Chronic Pericarditis, RA, Anemia and pending.
way to young to be this broken!

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/9/2014 8:44 PM (GMT -6)   
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!

lupie-leesha
Regular Member


Date Joined Oct 2014
Total Posts : 25
   Posted 10/9/2014 9:31 PM (GMT -6)   
Joie, I like it!

I'm actually stoney creek area. I use to live by centre mall though I'm use to the sketchy I just don't think I could fight back if need be anymore haha! I'm a bit on the frail side lately.

Ah iv heard good things about Dr. Legault my friend goes to see her actually!
I'm sorry you haven't gotten a 100% diagnosis yet, being sick is horrible but not knowing what the sickness is, is terrible!
I try to rest as much as I can! It's definitely hard with such an active little person haha but I love it she keeps me positive.

How many kids do you have?
Your sister is sick too? I'm sorry to hear it's so hard, at least you guys can relate to eachother?

Take care joie!
Leesha
Dx- Lupus, Chronic Pericarditis, RA, Anemia and pending.
way to young to be this broken!

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/10/2014 5:53 AM (GMT -6)   
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! :)
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 10/10/2014 5:58 AM (GMT -6)   
Oh did you say you're on 600mgs of plaquenil? That seems high especially if you are of slight build. I hope that's only temporary. Long term high dose like that puts you more at risk for eye problems. Make sure you have your eyes checked regularly!
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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