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Thread: Newbie introduction

  1. #11
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    Thank you I am also looking forward to asking many questions about the disease, as my family doctor won't really talk about it. He just says wait to see the specialist. One day at a time and just keep going and smiling each day.

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  3. #12
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    Welcome to the forum, Susan. The key for a good wg treatment is to find the right expert. There should be some good wg docs in Canada.

    I saw on other threads that you are looking for friends in BC area. Some friends are not active here now as before so I suggest you to send them emails through their profile here. Send it not as a pm but as an email. Write them your email address so that they can write back to you not only through this site.

    I suggest you to email @LisaT and @jola57 and @marta.

    some friends told me that they forgot their usernames and/ or passwords and cant log in to the forum. Any idea what they can do, @andrew ?

    Meantime, Susan, you can ask us whatever you want.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  5. #13
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    Quote Originally Posted by Alysia View Post

    some friends told me that they forgot their usernames and/ or passwords and cant log in to the forum. Any idea what they can do, @andrew ?
    Easy! They can email me and I'll sort them out
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  7. #14
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    Hi Alysia

    Thank you so much for your reply and yes I will email them. Just being on this site I am taking the news of wigeners much better, don't feel alone. Thank you to everyone on this site..hugs

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  9. #15
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    Hi Susan,

    Marta here. I live in Jasper, so only a ten hour drive away from you. Ha ha.

    First of all I have to say how bummed I am that we are meeting this way but if you're an optimist like me, you'll know that this is happening for a reason, and joining this site is the first of a series of healing, positive steps leading into a brighter future. That's how it was for me anyways. I read your post yesterday and started to respond then life once again got in the way, so here I am trying again.

    Yesterday I started writing about making sure that you have a rheumatologists with either some solid experience in Vasculitis, or no prideful ego that would keep them from conferencing with Vasculitis specialists if something in your case is over their head. Having been part of the medical system since 2010 with Wegener's, I've seen both sides of the spectrum, and it's hard when you run into a doctor of the latter variety that you have to stand up to, and call on their decisions. It's hard to be at your worst physically, emotionally and spiritually and have to stand up to a doctor to boot. I think this ego is part of the reason we have so many people on here having to wait so long to finally find a diagnosis. If the egocentric doctors can't figure out what is causing the problems you're reporting, then it must all be in your head. Arrrghh. Use all of your energy to find the right doctor. It's an activity that can save your life.

    My doctor here in Alberta is one of the heads of CanVasc, a small country wide organization of doctors specializing in Vasculitis. If your rheumatologist isn't one of them, they can certainly bounce questions, ideas, treatment protocols, etc., off of this group of docs. The best case scenario would be to get one of them as your main rheumatologist though. http://www.canvasc.ca/InformationCanVasc.htm
    What I wrote yesterday (but didn't post) was that you should get your doc to refer you to one of them, and then once the referral is through, you call the office, and tell them you've just been diagnosed with Wegener's and it's a disease that can turn on a dime, and you've been dealing with it for a long time and it's getting worse. Doctors always have holes in their schedules for things like this, and once I got a referral to my current doctor, early December 2010, I called them and told them my situation, and I ended up seeing the doctor January 3, 2011. If Christmas wasn't part of the equation, I would have seen her earlier. Actual specialists in Wegener's and/or Vasculitis KNOW that this is an unpredictable disease that is harder to treat once it's more established in the body, so they'll take you ASAP. I see that you moved your appointment up to end of September, so that's a good step in the right direction. I would push for even closer. Maybe give them a call and say that you're available to see the doc if anyone cancels. Let them know that you need to be under the right treatment ASAP, and who knows. Maybe you can get in tomorrow.

    Another point worth noting is that once you have an autoimmune disease or disorder, you're susceptible to more. Once your immune system is confused (our issue) it can turn on various organs or systems. The GBS might have been the first and now WG has snuck into the picture. There is an interesting coincidence with H1N1 vaccine, GBS, and WG (GPA) but that's a different topic altogether.

    When you go in to see them, go in with a friend (advocate), with a list of questions, and if no friend is available, ask if you can record the appointment because you're not feeling sharp, and might forget important information. Another thing that worked for me is asking your doctor for permission to have access to your lab work. It's really good to be able to go in and get it (you learn what it means pretty quickly) and then you aren't sitting around waiting for a call from your doc. You can also see if there are correlations between how you feel and what your lab work is showing. Sometimes you can even thwart a flare by looking at your lab results. It's so much more powerful of an experience when you feel like you're driving the car(e) instead of being a passenger on the bus.

    Staying calm is a good instinct. I believe that the stress also fuels the WG fire. You'll get a lot of unsolicited advice from people who have never heard the term Wegener's Granulomatosis or GPA (aside from Grade Point Average) and will tell you to not take the meds, to try an immune booster, or this or that. Remember that our particular flavour of autoimmune disease is a nasty one and if treated wrong can kill, and also that an overactive immune system is the problem (so all those well intentioned do gooders could do much more harm than good with their advice.) Just a couple of thoughts to keep in your back pocket.

    If you want to chat, please feel free to call me. Send me a PM and I'll give you my phone number or you can give me yours (I don't want to put it out here on the open web) and we can chat.

    I wish you nothing but success, healing, peace and a moment when you look back at this time in your life and say, "whoa, wasn't that crazy? glad it's all over and done with."

    Alisa, yes I still remember my password but I've been spending all of my free time this summer riding my new electric assist bike that I got for Christmas. As of a couple of days ago, I've accumulated 2,500km on my bike. It has literally brought my life back to me. I don't have enough words in my vocabulary to express how much joy, healing, and hope this one bike has brought into my WG life. But that's a whole different story.

    Lots of love to you all.

    Marta

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  11. #16
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    By the way. I am incapable of being economical with words. Sorry.

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  13. #17
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    Welcome Susan to the best group of caring and truly wonderful people. I am wishing you all the best with getting started on your treatments. Please keep us updated on your health. Please take care of yourself.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  15. #18
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    Thank you Jaha for the warm welcome. For me Sept 25th can't come quick enough. I know my blood work showed positive for this disease, but I need to hear it be confirmed 100% for sure I have it from the Rheumatologist and then it will feel real. I just don't understand why they make us wait so long to get the disease confirmed
    My brother told me NOT to tell people until I know 100% for sure that I have it.
    I feel like my head is spinning with hundreds of questions, like what is the next step to diagnose the disease? Was anyone told they have GPA just from a blood test?

    I feel like a cold coming on now, sneezing lots and lots of mucus in my chest. Not sure if this is part of the symptoms or not.

    I keep calling the Rheumatologist office for any cancellations but not luck yet. I just want to get in there.

    Thank you Jana and everyone on this wonderful site for listening to me. Once I see the Rheumatologist I won't be asking silly questions over and over.

    Hope everyone is having a good day and keep smiling

    Sue

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  17. #19
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    Hi Marta

    Trying to stay calm but finding it so hard. I am making my self numb all over until sept 25th when I actually hear the Rheumatologist say YES you have WG. I am not sure if blood test alone can say you have it. Not sure the next step they take to confirm the ugly disease. I sent you a private msg Marta to you.

    I hope and pray this Rheumatologist I am going to see knows lots about WG. I will ask to see one of the doctor's on the list of doctors (above) but I have a feeling my family doctor will say this Rheumatologist will be just fine. My family doctor doesn't listen to me at all. I've been trying to find a new family doctor but hard to find one in my area that are taking new patients.

    I've been going to my family doctor for over 2 yrs about my symptoms and all he keeps saying is come back in two weeks if your not feeling better. I keep going back and he keeps saying the same thing OR there is nothing wrong with you as all blood word is fine. Then I went back again and he was on holidays and a women doctor was taking his place and she said I see you have had lots of blood work done but is it ok with you if I get you to do just one more test and I did. This is when the blood test came back saying Positive for WG. Now my family doctor is back from holiday and calls me here. He said after all these yrs we finally know what's wrong with you!!!!! Please come back with a family member so we can talk. So I did just that, took my brother with me to see him. He comes in the room and looks at my brother and speaking to him as if I wasn't in the room. He never looked at me once and he never spoke about WG!!!!!!!!!!!! he was asking questions to my brother "is your sister stable" OMG, I almost fell off my chair and I don't know what happen to me, but I became hurt, angry and went numb thinking "am I crazy" are these symptoms NOT real??
    My brother was firm with him and said you are NOT listening to my sister when she comes in here not feeling well, you keep telling her to go home and come back in two weeks. The doctor didn't say a word. Then my brother asked questions about WG and he said you have to wait to see the Rheumatologist if she has it or not, because one day a blood test can show you have it and then the next day it can show you don't...so this is why I feel like I am going crazy and it doesn't feel real.

    Oh well 3 plus weeks to wait to get an answer so I can start dealing with it in a positive way and not be mentally messed up. I can't sleep anymore, want to throw up all the time and so so tired.

    Thank you Marta and everyone else on this site for putting up with me going through this right now. I appreciate all your support

    HUGS..xoxoxoxxo
    Sue

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  19. #20
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    Hi Sue,

    As you get ready to see the rheumatologist, write down your questions and take the list to your appointment. There are no stupid questions (and I hope you don't get stupid answers). If you can. Take your significant other, Mom or Dad, or a trusted friend with you to take notes. I hope your doc will also give you a document called an after visit summary. This will give you treatment instructions, the correct names and dosages of prescribed drugs, any recommended OTC meds/supplements, and recommendations for diet, exercise, etc.

    Be very wary of cold symptoms. They could be just a cold. They could also be symptomatic of disease activity. If you cough up phlegm and there's blood in it, call your doc right away.

    Hope you can see the rheumy sooner. Be persistent. If you feel much worse, call and tell them you're feeling worse. They may be more amenable to squeezing you into their schedule.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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