View Full Version : Hi Everyone!
03-13-2009, 10:28 AM
I just joined yesterday and wanted to say hello to everyone. I'm really glad I found this group - it seems like a great place!
I was diagnosed with lupus (SLE) at the end of 2006, along with what the doctor called Advanced Sjogren's Syndrome (has anyone else heard of it as 'advanced'?), Rheumatoid Arthritis, Reynaud's Syndrome, and gluten intolerance/celiac disease (doctors disagree on that one, but either way I'm on a gluten free diet!). It's been a challenging time, but I've also learned a lot along the way. I'm at a point right now where I am just frustrated and tired of all this. I want more of a life than what I have. I'm sick of making plans I can't keep because lupus gets in the way. I'm tired of missing out on things I want to do because of the overwhelming fatigue. I hate being different from my healthy friends, and giving up so much.
And really, I am fortunate in what I can do and I know it. I still work full time, I'm an elementary school teacher. I live with my dog Brandi (my avatar is her picture) :cute: I have very supportive parents who live a block away from me. I have lots of wonderful friends, although there are many friends no longer in my life. I attend a church that I love, with ministers and friends who love me too. But sometimes it feels like even though they try, and they want to understand, life with lupus is something healthy people truly don't always get.
My doctor doesn't seem to have much hope, and I'm looking for a new rheumy now. She said a year ago, when I was on a nebulizer 4 times a day because of lung involvement, that I'd never be any better than I was then. Well, I've been off the nebulizer for nearly a year now and cut way down on the medications I need to take. I showed her!! :yes: But I also know other people who have lupus, and are still able to live fuller lives. Who aren't limited to 2/3 of a day only. Who are able to date, marry, and have kids. At nearly 41, I don't expect to have kids, although I had still kind of hoped to foster or adopt one day. But although I know flares will come and go as a normal part of lupus etc., I believe there MUST be a way I can go for more than a week or two without a flare. Or am I being unrealistic?
Anyway, I guess I've rambled on way too much here. I'm going to try to find my way around and get to know all of you.
03-13-2009, 12:05 PM
Thank you for sharing your story. You are right. People who don't suffer from lupus truly just don't get it. My friends try to be supportive as well, but I can tell they are still frustrated when I can't keep up with certain things.
I also understand your overwhelming fatigue and how horrible it feels to be so different from healthy people. It's very frustrating. However, I know I always try to make the best of my situation, and I'm sure you do too. I never take "feel good" days for granted anymore, and it's a lot easier to appreaciate life when things are going well than before the lupus decided to enter my life!
Definitely find a new doctor, because yours doesn't sound very good. I definitely think you should be able to find a treatment that keeps you flare-free for longer than a week or two. What medications are you currently taking?
03-13-2009, 01:25 PM
welcome to the group.....this is a great place, and i hope you enjoy being a part of the forum. There are people here who have an incredible amount of knowledge, and they will always share their wealth of information. There are also plenty of people who share similar symptoms, experiences, etc.....we all learn from each other.
Oh yeah, and we all have the occassional good time and laugh at each other's posts. Thanks for joining us, i look forward to learning with you.
03-13-2009, 08:04 PM
Thanks so much to both of you for the welcome. I usually do try to find the good in every situation, I'm usually much more positive than I was earlier today. I guess I was just having a bad day today because I was supposed to go away this weekend and I wasn't up to it, which was disappointing. (On a positive note, I found Pacman in the arcade here, so I just may spend the weekend playing, lol!) This really seems like a fantastic place, where I will learn a lot, in fact I already have, and have lots of fun too.
Tasha, I'm on Plaquenil twice a day for the lupus. I also take Lovaza (prescription fish oil), Restasis drops for the Sjogren's, Symbicort and Singulair for asthma, Aciphex for acid reflux, a multivitamin, Vitamin B12, Calcium/Vitamin D combo, Evening Primrose Oil, and those chews for extra calcium/Vitamin D, but I can't remember the name of them right now. I'm really looking forward to my appointment with a new doctor in mid-May. I hope she will recommend something that will make a difference. I've been reading about Cellcept, and although the lymphoma side effect terrifies me, it doesn't sound like it happens too often. That's one thing I want to discuss with the new doctor when I see her.
In the meantime, I'm looking forward to a fantastic weekend playing with my dog, maybe getting a bit of last fall's leaves raked in the backyard (oops!), making a small dent in my mountain of laundry to wash, and finding my way around here. Much less stressful then traveling anyway! And less expensive too! :cute:
Thanks again for posting and making me feel welcome here.
sick n tired
03-13-2009, 09:15 PM
Welcome to this forum!
I agree, normal friends and family don't always know or understand. My doctor thinks I may have Sjogrens also. ( I have never heard of advanced) My eyes are killing me all the time. I hate this dry feeling. The only eyedrops that I have are natural tears, though and I don't think they are working very well
How does the restasis work?
I am 47, used to be a teacher...(what ages do you teach?) I loved k-3...but I also have taught Jr high, too...in the past, waaay past, back when I had more patience.:laugh:
I also have reflux. My dad died of Barretts Esophogus 2 years ago. Actually, he died of the cancer that formed because of the barretts. I have bad gerd at times. My Rheumatologist thinks I may have Celiac, but the Gastro doesn't. I would like to think I don't but I watch that I don't eat too much glutten...not on gluten free, yet though.:cute:
Well Welcome...and I am pleased to meet you.
03-14-2009, 06:34 AM
Just to say hello and welcome and lovely dog. Hope you are having a good day today. Catch up with you soon.
03-14-2009, 07:55 AM
I am Saysusie, the moderator/administrator of this site. You've been greeted by some of our members and have already seen how understanding and supportive our members are.
The debilitating fatigue is something that we all can identify with. Our other moderator, Rob, described it so succinctly when he said that it felt as if we are lying under a lead blanket. I think that it is the fatigue, more than most of our other symptoms, that dictates what we will and will not do with our days and if we will or will not participate in activities.
Learning to modify your life so that you can still do some of the things that you love to do is one of the hardest adjustments to make with this disease. There are medications that can help with the fatigue to an extent. However, with each medication comes a set of side-effects and we must make a decision about the lesser of two evils:grumpy: But, there are many of us who have managed to find a way to maintain a somewhat normal lifestyle while living with this disease and dealing with our medications. Like you, we have had to eliminate some people from our lives who were toxic to us and surround ourselves with only those who are supportive, caring and who, at least try to understand.
You have come to the right place to be amongst others who are supportive, who care and who definitely understand! We are here to help you as much as we can and for as long as you need us
Peace and Blessings
03-20-2009, 12:45 PM
I have been meaning to get back here, but it's been a crazy week. I posted a reply a few days ago, but something went wrong when I clicked on 'submit reply' and instead of my post going through, I ended up on someone's profile! I have no idea how that one happened, and my post was gone too.
Anyway, thanks so much for the posts, Saysusie, Angel, and sick n tired.
Sick n tired, I have noticed a huge improvement with my eyes since being on Restasis. I was a bit skeptical at first, because it took about a week for me to notice a difference. But my eyes are hardly ever red and sore anymore, unless I've not had enough sleep or I'm in a flare. The few times I skip a dose, I can REALLY tell a difference, so I'm sticking with it. And I haven't had any of the burning that some people experience from Restasis. I don't need any additional drops either now, no artificial tears or anything.
I'm really sorry to hear about your dad. Grief is the hardest thing of all to deal with, in my experience. I haven't heard of Bartlett's esophagus, but it may be something for me to look into, because I do have issues with the esophagus that the doctors haven't said much about. The GERD is much worse lately, which is not making life much fun at the moment, but I've learned to expect anything with this auto-immune stuff.
I teach 5th grade, and totally love it! (Most of the time!) :laugh: They are so much fun and keep me laughing, even when the rest of my life doesn't feel too funny. Are you working now?
Angel, it's great to meet you here, and I look forward to getting to know you better.
Saysusie, your post was so helpful. I may not get here every day, but I do look forward to being a part of this community. I was a part of another message board (not health related) for over 8 years, and it closed in January. While I've kept many of the friendships, I've missed the community a message board like this provides. And it's so good to be around people who truly understand, who are going through so much of the same things I am. And wow, the way you and Rob describe the overwhelming fatigue is exactly it!!! I call it "lupus tired" to my family and have tried to explain it's different than what everyone else feels when they are tired at the end of the day. But yeah, the lead blanket is spot on!
Until I found this site, I had no idea there were medications for fatigue, or even any other treatment options besides Plaquenil and methotrexate. And prednisone, of course, which I've been on more times than I care to remember.
So thanks again, all. I'll try my best to be around more now. :cute:
03-23-2009, 11:01 AM
We are so happy that you are here and I am glad to hear that we've been helpful to you. One of the things that will always happen here is that you will continually learn about medications, symptoms, treatments, and how the disease affects you. One of the main purposes of this site is education. I hope to help everyone become an effective advocate for their own health care, and education is one of the ways that we can achieve that! :yes:
We are here for you!
Peace and Blessings