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Beckey Lapp
05-09-2009, 03:18 PM
Hello everyone, my name is Beckey, I was diagnosed with lupus 7 years ago. Then they said I don't have lupus. Then I do. It has been going back and forth for all these years. I finally found a rhuemotologist I like, and I'm back to having lupus and something else he hasn't been able to dianose yet. I think he will actually be the one who helps me because he listens to me and looks at everything. I've been going through a really rough spell for about 7 weeks now, just when I start feeling better I get knocked down again and feel really bad and end up in bed for a couple of days. I'm trying to learn to live with limitations but am not very good at it. I am making progress though. I look forward to meeting new friends who can understand what I'm going through. My family is great and very helpful but they get just as scared and frustrated as I do. My hope is to help us all get through this time of turmoil.:wacko:

Angel Oliver
05-09-2009, 03:29 PM
Oh hi Beckey

Glad you made it here ok. Isnt it strange hey how sometimes it carnt be diagnosed quicker...im in the same boat.So far i have M.E (Chronic Fatigue Syndrome).Who knows they may be right,but with my extra symptoms i have my doubts.As i told you in the blog,before Christmas they said it was Lupus before blood works came back.....to then tell me it was'nt.
I am so glad you found this site as many members will come and comfort and help you through this stressful time. Remember...when your body tells you to rest...do it! Hopefully in the very near future this new rhemi will help you,diagnose you and give you meds to help you live instead of just exist.We are all here for you my friend.

P.s Dont forget the breathing technique i gave you for the panics....it will help a little.xxx

lots of love
Angel.xxxxxxxx

rob
05-09-2009, 04:05 PM
Hi Beckey,

We've already met in my capacity as a moderator here, but I thought I'd also say hello and welcome you to our group as a fellow lupus patient. I was diagnosed with systemic lupus five years ago, I'm 41 years old now, and on full disability.

Your story, and the rollercoaster ride that it is, is a very familiar one. Most, if not all of us here, are on that ride or have experienced it in the past. And your story of being diagnosed, then un-diagnosed, is unfortunately a common one too. My last Rheumotologist asked me "what makes you think you have Lupus?". Well, I don't think I have Lupus, I KNOW I have it as I was diagnosed by four different rheumo's including two for my Social Security Disability application to be approved. They don't approve you for full disability if you are not disabled. Of course, this logic was lost on this rheumo, so I fired him. These days, I tell all my various specialists that I am NOT seeing them for a diagnosis, I already have that. I am seeing them for TREATMENT! If they cannot help, I turn around and leave.

I'm sorry you have had this frustrating, emotionally draining experience. I understand how you feel. It's a very good thing for you to admit to yourself that you have limitations. None of us are particularly good at that task. All we can strive for on most days, is progress. Finding a good Dr./Rheumo who can help you is one form of progress. Coming here and talking to others with lupus, is also progress. It definitely sounds like you are moving in the right direction.

We are a pretty laid back group here, so please make yourself at home, and don't be afraid to jump into the conversation whenever you want. You'll find some really understanding, and supportive people here. Welcome!

Rob

wrightrs
05-09-2009, 10:13 PM
Hello everyone, my name is Beckey, I was diagnosed with lupus 7 years ago. Then they said I don't have lupus. Then I do. It has been going back and forth for all these years. I finally found a rhuemotologist I like, and I'm back to having lupus and something else he hasn't been able to dianose yet. I think he will actually be the one who helps me because he listens to me and looks at everything. I've been going through a really rough spell for about 7 weeks now, just when I start feeling better I get knocked down again and feel really bad and end up in bed for a couple of days. I'm trying to learn to live with limitations but am not very good at it. I am making progress though. I look forward to meeting new friends who can understand what I'm going through. My family is great and very helpful but they get just as scared and frustrated as I do. My hope is to help us all get through this time of turmoil.:wacko:


Hi Beckey, I'm Becky too !!! But without the (E). Sorry you had to go back and forth so much. I have bad day and good days too !!! But lately I've been real sick and want to go back to the bad and good days. It's good you have a doctor that listens that's hard to find. I'm so glad your here. Every body's so nice here. And it nice to have people to talk to that knows what lupus is like.

TobyJug
05-10-2009, 03:51 AM
just wanted to say welcome....
Chin up...

Saysusie
05-10-2009, 07:47 AM
Just wanted to take a moment to welcome you to our family here. As you can see, the members here are very understanding and supportive. We are too familiar with the roller coaster that you speak of.
I am glad that you've finally gotten a rheumy who believes you, who listens to you and who will help you.
We are all here to also help you in any way that we can:yes: Again...welcome!

Peace and Blessings
Namaste
Saysusie

Pearl
05-10-2009, 09:49 AM
Welcome to the forum. Your frustration is understandable and you are not alone. Many here have been on the diagnosis rollercoaster. It is not a fun ride, but please know we are here to share it with you.

Hope today finds you feeling better.

Jana

BadFlareDay
05-10-2009, 03:31 PM
Welcome to the forum Beckey. I can also relate to the roller coaster ride that the doctors enjoy putting us on. You'll find a wealth of help and knowledge here on the forum.

dsunshine
05-10-2009, 04:23 PM
Hi Beckey!
Welcome aboard. You will find all the love and support you need right here.

ashleybaby715
05-10-2009, 05:46 PM
hi beckey!
im ashley. im sixteen years old and has been diagnosed with SLE this past january. i'm sorry to hear that you have been having such difficulties with your diagnosis. but just remember that lupus is a very tricky disease, so like one minute it could show symptoms that resemble the disease, next minute they don't. we all completely understand what your going through. it always works out that you will have a few good days, then BAM you feel terrible.
just come to us when you feel down, we'll all be sure to make you feel better!
i would love to hear more about your ''lupus'' story... so whenever you get the chance, you can message my page and we can talk more !

talk soon!
Ashley :]


Hello everyone, my name is Beckey, I was diagnosed with lupus 7 years ago. Then they said I don't have lupus. Then I do. It has been going back and forth for all these years. I finally found a rhuemotologist I like, and I'm back to having lupus and something else he hasn't been able to dianose yet. I think he will actually be the one who helps me because he listens to me and looks at everything. I've been going through a really rough spell for about 7 weeks now, just when I start feeling better I get knocked down again and feel really bad and end up in bed for a couple of days. I'm trying to learn to live with limitations but am not very good at it. I am making progress though. I look forward to meeting new friends who can understand what I'm going through. My family is great and very helpful but they get just as scared and frustrated as I do. My hope is to help us all get through this time of turmoil.:wacko:

froggal
05-11-2009, 10:50 AM
That is awful!! I think that I am one of the few people here who has not had to go thru all that crap! I was diagnosed in september of 08 after spending my entire summer in the hospital. The good thing about it was that ALL of my doctors agreed on the diagnosis. I see 5 doctors! I am so sorry about your situation. Please know that we are always here for you. Always a friend ~ Angie

mountaindreamer
05-11-2009, 11:40 AM
hi beckey,

welcome to our little group. As you can tell, there are a lot of caring and compassionate people here, and we are all ready to listen whenever you need us.

I am so glad you found a rheumy whom you like. There are ways that drs. can get us relief sometimes, and i hope that your dr. will help you get a break from this crazy ride.

i look forward to being friends.

wrightrs
05-11-2009, 07:26 PM
Beckey, Hope your feeling better. I'm so glad you came here. I'm so glad I met you on twitter. Your a Dear friend.

Rastagirl
05-11-2009, 09:43 PM
Hi Becky... :wavey:

Just wanted to welcome you to the forum. Sorry you've been on the diagnosis rollercoaster...you sure aren't alone. There are plenty of members here that have been on it for a lengthy ride. It's good to hear you've found a good doctor though...especially one that listens to you and takes the investigative work seriously.

I think one of the most difficult things to deal with when you have Lupus is the uncertainty of when flares are coming or going, how long they'll last, and what kind of ride they'll take you on this time. It's just so frustrating waiting and wondering if you're ever going to feel better...and then just when you start to, and you get your hopes up that this ones about over...along comes another to knock you back down. Sometimes it feels like you're being punched down everytime you try to get back up, and you may begin to wonder if it's even worth trying to get back up. But don't give up hope that the flare will one day be over. There is always a light at the end of the flare tunnel...sometimes it's just a tiny speck far off...but eventually you will see it getting brighter and brighter...and there will be a day when you step out of the tunnel and into the beauty of the day, free of the rotten flare.

Always hold on to your hope when you have this illness...let it be one of the things that you never let Lupus steal from you. I've lived with it for 27 years...and have spent the last 15 years in remission. And I managed to have 2 miracle children along the way...even after doctors told me I probably never would.

I'm glad you joined us...I see you're from my corner of the U.S. Are you a purebred Oregonian, born and raised, or did you migrate here?

Fondly,

:cool2: Lori