View Full Version : My first post
10-13-2008, 11:56 AM
Greetings to all...
It took years to be properly diagnosed. I just kept getting sicker. Finally I was so swollen that I could no longer wear my wedding rings and it was hard to walk up stairs. I kept forgetting simple words (nouns) and I had allergies that were out of control. I thought that it was the end of me...that my body was shutting down.
I couldn't make plans with friends because I didn't know how I would feel from one day to the next.
What a rotten disease...it keeps mimicing others and really robs you of a lot of things. It is hard not to feel bitter and cheated. I do occasionally.
But still, I didn't take it seriously for a long time. I took my medication but that was about it.
No real support..it's a lonely disease-I really don't look ill.
People just assume that everything is ok.
That was 15 years ago and to this day, I find it difficult to accept that I can't always achieve what everyone else seems to.
Why is so hard to be kind to yourself? My focus now is to simplify things.
I have to just let things go. It is what it is.
10-13-2008, 12:23 PM
Hi Cdn Grl and welcome,
This is a wonderful site, very friendly and supportive. I am still struggling to get diagnosed.
My family doctor is wonderful. My sister is diagnosed with lupus and my mother had it as well.
My rhuematologist is a pain in the behind, she doesn't recognize lupus as a viable diagnosis for anything. I am currently looking for another rhuemy but they are few and far between here, so I have to stay with stinky face till I get lined up with another one.
You are quite right. Lupus is a sneaky little thief. Robs us of our energy and some of our freedom.
Lucky for me I have more good days then bad days. When I'm having a bad day, the folks here are warm and supportive.
It's nice to have a place to turn to.
I'm sure the others will be along soon to welcome you :) Looking forward to reading your posts.
Hi Cdn Grl,
I'm Rob, and I was diagnosed with SLE in 04'. I have to say, your words really hit home for me. You mention so many things that are unfortunately common for most of us here. I forget simple words. My friends stopped coming around because I could no longer "keep up" with them. I don't look ill at all, but I am. The loneliness, the bitter and cheated feeling, and the fear, can be awful. It is a lonely disease.
Some of the loneliness I have is made less by coming here and talking. I think the only people who can truly understand Lupus are other people with the disease, as well as those who are in the difficult process of trying to get a diagnosis. I hope this place can help you to realize that you are not alone.
Welcome, please make yourself at home.
10-13-2008, 05:34 PM
Thanks for the quick response and words of welcome!
I don't know why I decided to seek out this website today...but I did and I am glad that I did.
I can't expect other people to understand having Lupus. Family and friends can be supportive but they can never truly understand.
Just browsing through the forums have made me feel better already.
Today is Thanksgiving Day in Canada and now you have given me another thing that I can be thankful for...finding this site!!!!! :idea:
10-13-2008, 05:39 PM
Hello and welcome -
You are definitely not alone here. Many of us have been through the "pre-diagnosis" years, and some of us are still fighting the good fight without ever having been given the lupus label. It is a challenge with which we are all familiar. We share your frustration.
As well, we all have days when someone inevitably says, "but you don't look sick," otherwise stated as "you must be feeling well, because you look fine." I simply smile and say "thank you." If someone asks how I feel today, I tell them that I'm upright and breathing, which is better than the alternative. That usually makes us both laugh. No one understands the roller-coaster better than those of us here....we're glad you joined us.
Congratulations on 15 years. I mean this in the best of ways. You are a survivor. I am proud of you.
10-15-2008, 09:40 AM
Welcoming you with a big hug Cdn Girl...
I am happy too you have found this site. I felt, still feel at times like you..accepting Lupus, calling it names, like rotten..IT, denying IT.
And when you feel that way you now have a place to be understood.
Saysusie helped me to realize how to really live in the moment, though I thought I had. Mine was more of a day by day..but when you hurt and putting your feet on the floor, the start of the day..that is the moment. And it wasn't so bad. Saysusie words have helped me to find my way.
The day isn't doomed by one moment, as there is another moment coming.
I read, somewhere in a book, a magazine, words from who?....not verbatim... If we don't take care of our bodies, where would WE live. Simplify, moderation, listen to your house.
It is was it is, and in what it is, there is joy to be found too...
10-15-2008, 12:00 PM
Hi Cdn Grl,
Welcome to the site. I also have Lupus and have had it for most of my life. I hear where you are comming from, because this is a hard illness to deal with big time. Often times we don't look ill, but indeed we are. I think the hardest thing for me was having to give up going to the beach when my children were young. I could not in any ways tolerate the sun. I still can't and I had to come to the realization that there are a lot of things that I had to give up reluctantly, but it is just the way that it is. Please keep coming in and posting we all care very much for you and about you.
10-20-2008, 08:17 PM
I am recently diagnosed. Last April, i amstill learning how to deal with the things that i have to (like you said ) reluctently give up. I am a very physical guy. I like sports, outdoors, the beach and alot of other NON LUPUS activities. It has been a really big challenge so far. I have great support from family and friends, but sometimes that isnt enough to over come the frustration that Lupus brings to life.
Does it get better????
10-20-2008, 09:43 PM
Your frustration is tangible. And so very understandable. It really is a grieving process, accepting this lupus change, isn't it? I wonder what it is that you miss most about the activities... being outdoors or the physical activity, etc? Have you been able to find a way to modify some activities so that you can participate, or have you been able to find any substitutes that you can do indoors?
Reading posts and encouragement from members who have a lot of experience with lupus, it seems like things do get better - some days ;)
I think I'm hearing that the key may be to really enjoy the times that are good, not to let them pass by without taking in as much of the full experience as possible. Then when you hit the potholes in the road, you can use the memories to keep you hoping (looking forward) for more of those good times to come. I think that is one of the hardest things for me - not letting the bad days totally suck me in.
I hope that tomorrow is nice to you :)