[JoanneD]

Hi, My name is JoanneD,from Ontario Canada, it has taken 15 years to obtain a diagnosis. This involved obtaining all my medical records from hospitals and other doctors,surfing the internet and finally going back to my family doctor and requesting the blood tests for lupus;which came back positive.I was also informed when the blood tests came back that my one kidney is damaged.I am currently awaiting a call from the specialist in rheumatology (so far 2 months waiting).i am currently taking pain meds and recently had a hysterectomy in June around the same time as my diagnosis for lupus came back. It has been a big whack on the head for me and i am feeling very sad and confused and frustrated all at the same time.I am very glad i found this web site so that i will get to know others in the same boat as i am, i guess i just don't want to feel all alone anymore after many years of various illnesses such as Raynauds,vision,kidney,pain on left side etc. What a way to introduce myself. I truly need other people who are in this situation to "talk" with. I feel like other individuals really do not realize what a "hit" this means to me..my family is trying to be supportive and i feel like i am just floating along waiting for the next shoe to drop. Is anyone as frustrated and confused as i am, yesterday and today is such a painful day. I would enjoy hearing from anyone, i am just learning the hard way about my diagnosis. Thanks for letting me vent too.:sad::worried:

 

[Katharine]

Hello Joanne and hugs :hug:

I think many here can identify with your frustration, confusion and overwhelming sense of loneliness
Unfortunately, it is terribly hard for anyone who has not been through something similar to even begin to imagine what this disease means or what it does to our lives. Thanks to this site I am able to avoid "burdening" my loved ones and friends with things that are simply beyond their comprehension (and it also stops me complaining to them all the time :lol.

The forum here is a great place to vent and also to ask questions. You will reach a lot of people who can give you feedback and you'll soon realise that you are truly not alone.

Also, we have a very friendly chat room where you can chat "live" with people. If there's no-one in there but you feel the need to talk, try going in yourself and someone should come along soon to join you.

Bye for now,
Katharine

 

[greenhaggis]

Hi there Joanne and :welcome: to the forum!

You really have been through a lot and its seems to have Rollarcoasted at the moment!

Perhaps you need to chase the appointment with the Rhuematologist!

This site is full of many lovely, friendly, informative members. Also there is a chat room that you can enter if you want to chat away!

Take care and let us know how you get on!

 

[pamela b]

Hi Joanne
Welcome to the forum, you will find it a real strength.
I was dx in May and yes feel just the same.
These wonderful people have kept me sane and hopeful as no one else can or knows how to
Please chase your appointment, you shouldnt have to wait that long.
I do hope that you have some better days and that the specialist sorts out some good meds for you to make you feel better

Take care
Lots of good wishes
Pam

 

[Pink Pearl]

Hi Joanne, and welcome to the board. I add my sympathy that you have this, but this is a great place to learn coping methods and sound off.

I understand your anguish, it took 30 years before I was diagnosed 20 years ago. I started to show the first signs at 5. I am also one of those few who have never had a positive ana test. Positive on a lot of other things, but not ana's. IMHO doctors who put all their criteria in one test need to have the disease themselves to learn what they put us thru. But that is just me.

I think you will find this group has a LOT of experience and the moderators are the best. If they don't know an answer, they usually know how to find it.
Sally

 

[Teresajane]

Hi Joanne

You have come to the right place!! i only joined last week and am so pleased i found this site it has helped me so much , i was diagnosed 3 years ago and this is the best i have felt about myself since then!!

Teresa x

 

[debatat]

Hi Joanne and welcome to the site. You have definitely come to the right place for help and support. Being diagnosed with lupus is a rollercoaster of emotions. Talking to other lupies really helps. Let us know how you are getting on and do join us in chat sometime.

Deb

 

[Dreamgirl11]

I feel your pain and frustration..I too am going through the same thing...this is a great place to be with others who undersatand in a way others cannot..hang in there..we are here for you..

Diane

 

[elisabethm]

:welcome:Joanne you have came to the right place for support as you can come on and have a moan and no one minds as we all do it sum time.We also have a good chat room where you can come on and speak to anyone that is in chat.Hope to hear from you again.Elisabeth

 

[lesleyc]

Hi!

you've definatley come to the right place.

the members of this forum are amazing.
they have helped me in so many ways to cope, deal and try to be as proactive about this disease as i can.

and if you're having a bad day and need to vent they are always here!!

take care!

lesley

 

[keebler]

Hi Joanne,

Welcome to the site. You won't be alone here.

People from all around the world are members, someone is usually here at all hours of the night.

The members here are willing to share their experiences with lupus.

Take care,
Lyn