Originally Posted by Twinmama
Welcome to our large family of the WHL and it's lovely to have you with us and to share your experiences.
I'm so pleased your learning all about Lupus because it can be a shock to the system and i hope the threads are helping in so many ways.
I was diagnosed 3yrs ago but was actually born with it and over the years had alot go on and now with the Lupus trying to cope as well but like yourself i have swelling of the joints and they go inflammed/headaches/chest pain & lung pain [Lupus can cause the muscles of the lungs to swell and i'm on 3 different inhaler's a day]freezing cold of the raynauds/extreme fatigue/ foggy head/ hair loss/ manic depression & that's the worst symptom for causing it to trigger.
All of us on the site suffer like your doing, alot master it so well and some not so good but it's all down to the person themselves.
~Hugs Terri~ xxx
Hello! I just found this forum and wanted to say hi because I live in Toronto and am just about the same age (29 for a couple more months!) I'm going through the process of getting a diagnosis. My symptoms haven't been as clear-cut as yours and it's taking a long time to get a diagnosis. Also, I don't know what it's like in Hamilton, but I've had long wait times to see specialists and get tests done. I'm getting most of my medical care through Sunnybrook Hospital, but there is an autoimmune disease centre at Mt. Sinai so when I'm certain that I have lupus (or scleroderma, which is also a possibility though I have no skin involvement yet) I may ask for a referral there. I just think that doctors who do nothing but treat lupus/scleroderma/vasculitis will be able to treat it more effectively.
Anyway, it's a really frustrating and depressing time. I really sympathize with you. From your screen name, I'm guessing that you have twins?! I have 3 children, including a baby, and I know how hard it is to care for them when I'm not feeling well. I also worry constantly now about what will happen if I'm not here for them, either because I'm just ill or hospitalized or if I were to die. I know that lupus is highly treatable now so I try not to get too anxious, but of course my mind goes there sometimes. And it's especially hard to think about mortality when you have young children counting on you.
Good luck! I hope you'll find lots of useful information here, and feel free to contact me if you ever want to chat.
Hi Zoe! Welcome to WHL! Don't feel alone about the long diagnosis. Many people go for months and even years trying to get a diagnosis. It is frustrating when you know SOMETHING is wrong but you can't get anyone to give you a firm answer!
We are here while you are waiting and hopefully we can be of some help!
How are you doing in yourself? and i do hope it's a pain free day for you, keep us updated please.
I am also a Canadian living near our Nation's capitol. I was diagnosed in Feb and am in my mid 30's/ I want to recommend a book for you. I am not all the way through it but it has answered a lot of my questions. It is called The Lupus Book by Dr. Wallace. There is also another book/Despite LUpus that has been recommended to me about living well with lupus but I haven't read that one yet. From what I understand there are local chapters of Lupus organizations all over the province. Check the Lupus Ontario or Canada or Ontario Lupus Federation sites for details. I have taken some power back and will be participating in the Walk for Lupus in May in my community. The idea of fundraising for research for something that affects me and may affect my children or their children helped me to feel empowered against this "new" force in my life. Best wishes and take care. (I have yet to connect with my local groups either but am hoping I will meet some other Lupus patients at the walk.)
Thanks bunny, I will look into that book! That is if I won't fall asleep before I finish the first page. I tend to do that with any book. lol
I found support group in my area. they have a group meeting tin may with a doctor speaking. I wish there would be more meetings...support group type .
I would love to be a part of Walk for Lupus. I tried to find Walk on Lupus in my area, but no luck. where did you find out about it? will it take place in Ottawa?
Doing OK. went for more bloodtests . have red spots all over my body. not rash. just spots. have no idea what it is? Dr. is sending me for MRI cause of my migraines. no meds work whn I get them, and I get them quite a lot.
Originally Posted by Peridot20_Gem
my body pains(muscle and joints) are pretty much gone thank god.of course there is some pain at least once a day, but it's nothing compare to before the meds! :)
How are you feeling?
Just wanted to say hi!!
You are in good hands at Sunnybrook!!! I live just outside of Peterborough, ON and my cardiologist, hematologist and rheumatologist are at Sunnybrook (because there are very few docs in PTBO that know anything about Lupus and APS that I have been struggling with for 4 years now). If you can get a referral to Rheumatology at Sunnybrook (I highly recommend Dr Dwosh or Dr. Cohen) they have been absolute life savers for me!! I also have 3 kids, although mine are 14, 12 and 11. Hang in there I know sometimes the worry can be insane. You have many more years of life ahead of you, be thankful for the days your well!!!
I lied ! The pain is NOT gone! Was just having an ok day yesterday :(
Originally Posted by Twinmama
Well lets say you've had a less pain free day and call that one a boost.lol Blood tests just never end but i've never personally had just a rash of red spots over my body and hopefully they should find out taking the bloods why the rash is in your system.
Originally Posted by Twinmama
Those migraines which you call them are so severe it's terrible, i've took painkillers the lot and nothing removes them, so i've found if i take a 5mg valium every 2 days it seems to keep me at a carm level plus my head but banging it friday as coursed me some pain, i do hope nothing severe comes from the MRI. I have one every year to check my skull with my seizures and check how my brains doing as i'm half brain damaged on the right side through medication and seizures.
Well itis nice to hear you woke with your joints feeling abit better, i woke this morning both hands and finger joints swollen, muscle spasms as perusual, they was easing off with the plaquenil i take but have started coming back.
Well look after yourself. xxx