Greetings from Montreal!

TaurusLady · Posted: Tue Jun 24, 2008 1:45 pm Post subject: Greetings from Montreal!

Hello everyone!

I'm so glad to have found this website! I was diagnosed with SLE on December 2005 after spending 6 months with atrocious joint pain, high fevers, swelling of my feet, rashes, hospital stays and numerous misdiagnoses. You know how it is....

I was first diagnosed with anemia, then with a form of poly-rheumatoid arthritis, even the doctors weren't completely sure about that diagnosis. But in the meantime the disease progressed and the medication wasn't helping either. It got so bad that in December 2005, my mom and I went to a different hospital and I swear to you, the doctor at the emergency room there diagnosed me within 20 seconds.

But the disease progressed so fast within the few days after my proper diagnosis that I had to be operated for a pericarditis and pleurisy: the surgeons removed 1 litre (approx. 2 US pints). The surgery went well, I took a semester off after the operation to recover and build up my emotional, physical and spiritual strength.

I haven't had a flare in a very long time, except for the typical rashes due to sun exposure, but then again, I'd take a rash over chest pain any day. Sure it can take a while to go away, but it doesn't hurt as much.

I've been through an emotional rollercoaster during the first 5 months of my diagnosis, but seeing a therapist, praying, writing, working out and talking about my fears to my loved ones really helped me develop a positive outlook on my disease.

I know that some lupus patients have it harder than I, but I still understand their pain and worries. There are many lupus patients in Montreal, but aren't that many support groups, so I hope that I can find some Montrealers on this site so we can get together and find other lupus patients in Montreal who may feel alone or isolated.

Like my sister told me once: You have lupus, but don't let lupus have you!

sits_inthe_corner · Posted: Tue Jun 24, 2008 2:58 pm Post subject:

Hello and welcome TaurusLady

I'm in Nova Scotia. I'm not fully diagnosed yet. I've had one possitive ANA, a boarderline and two negatives

I'm beginning to think that there is a serious lack of interest in giving diagnosis here. My rhuemy stuck me on plaquenil but says it's for arthitis.

My mother had lupus, and my sister has it. She is in remission...yeah for her. I hope she stays there for a very very very long time.

I'm not having a good time of it right now. Swollen sore and tired.

One thing about lupus is it's so different for each person affected. Yes there are a lot of common symptoms that we share, but you'll find the people here understand and are sympathic to everyone's issues. We all have our crosses to bare.

So welcome, I'm sure the others will be along soon to welcome you as well.
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Oh look ... a cookie

laurid8967 · Posted: Tue Jun 24, 2008 5:48 pm Post subject:

Welcome Montreal -
What a story...another woman misdiagnosed, who would have possibly died had she not found another doctor! Shocked

Jeez... Im sorry you ended up having to have surgery - Im sure that wasnt a good time - but its nice to hear youre on your way to recovery.
THis is a wonderful site to learn about this illness, and the many shapes and forms it takes in each one of us. Its also nice to have a place you can vent, kick and scream if you need to #Mad

- and we will all understand. Wink

Welcome and looking forward to getting to know you...
Lauri
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God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 594

Hi and welcome to the forum. There are a lot of us who come here that have Lupus and this is a great place to go to. You will get a lot of comfort and advice from people who truly understand. It really helps to talk with others as for years I did not talk to anyone about it. I guess I just did not want to think about it. I love coming here and reading the posts and have gotten a lot of really good answers. Welcome and there will be a lot of wonderful folks who will welcome you as well.

God Bless
Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Saysusie · Posted: Wed Jun 25, 2008 7:59 am Post subject:

Hello and Welcome TaurusLady; Razz

Your story of misdiagnoses, unexplained pain, and serious state of disease by the time that you are diagnosed is quite familiar to almost all of us.
I am glad to hear that your symptoms are not as serious as they were. Are you taking Prednisone to maintain your pericarditis and pleurisy? My daughter suffered from both of those maladies, so I know how frightening and painful they can be.
You have already met some of our members and you can see that everyone here will understand what you are dealing with. This is a safe place to come if you need answers, information, support, understanding or just need to vent. I am glad that you are here with us.

Peace and Blessings
Saysusie
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Look For The Good and Praise It!

TaurusLady · Posted: Wed Jun 25, 2008 12:17 pm Post subject:

Hey Saysusie!

Thanks for the welcome! I was on Prednisone from December 2005 to September 2006 to treat the pericarditis and pleurisy: I started at 60mg and gradually went down, but let me tell you that I had puffy cheeks for a while and my friends had A LOT of fun pinching my cheeks for about 8 months! I've been on CellCept since March 2006 and (God willing!) I should be done with it in March 2009. Is your daughter on Cellcept too? It can be quite a hassle sometimes, but it works better for me than Imuran.

Saysusie · Posted: Wed Jun 25, 2008 8:49 pm Post subject:

TaurusLady;
My sweet daughter, Lauri (the person to whom this site is dedicated) passed away in December 1999. I often forget that this is not common knowledge, especially given that fact that I talk about her so often. Talking about her is absolutely necessary for me, but I apologize for not telling you about her when I mentioned her in my post.
If you go to the home page of this site, you will see the site dedication, which is her story and the motivation for this particular web site. Everyone here in this family is very, very understanding of my need to talk about her and they are extremely accommodating during those times when I become sad. So, this site is part of my healing process as well as my attempt to honor my daughter.

Peace and Blessings
Saysusie
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Look For The Good and Praise It!