Hello to all,
I was recently diagnosed with Sjogren's but I didn't just begin the journey with this autoimmune disease. It has been a frustrating journey to finally get to this diagnosis but I'm betting I'm not alone in this at all, and I'm looking forward to reading all of your accounts.
I'm a 39 year old mother of 3, I have a 17 year old son and 7 year old boy/girl twins who keep my very active even though my body rarely feels like moving. My story began about 3 years ago with joint pain/swelling, extreme fatigue, dry mouth & eyes and IBS/nausea. Before this all started I was healthy and around 128 pounds. Then I had gotten "sick" and down to 106 lbs with no real diagnosis so they put me on steriods which did help bring some weight back on. I had very little appetite and very little energy. My ANA titer (sp?) came back positive and then they ordered (if memory is serving me correctly) a double stranded DNA and from that my family dr sent me to a University for more advanced bloodwork.
Prior to that the small town dr's were telling me they weren't sure what it was, maybe Lupus, maybe Rhuematoid Arthritis but my RA factor was negative so it would take time to diagnosis if it was RA. I even saw a Rhuematoligist once who told me it was all "in my head" and was most likely Fibromyalgia. I asked him HOW could it be all in my head when my white counts were in the two's and I had blood work to support something that was going on, not just my reported symptoms?! He had no good response for me so I left his office wanting to slap him and never went back.
Long story some what short, we recently moved to a larger city with better health care and I believe better educated doctors...thank you God! I have been with my new Rheumatologist for less then a year and he was able to confirm that yes it is Sjogren's. He suspected this right away but I had never heard of it and was relectant to accept any diagnosis because of the run around I had received for so long. But after a few conversations with him and reading the symptoms of Sjogren's, I basically was feeling like it was a check list for me I knew he was right.
So anyway, I have special mints ordered by my dentist to combat the constant dry mouth, eye drops at the ready for my gritty eyes and pain meds which I use at times when my joints are just swollen and miserable. We did try a stint on Plaquenil but unfortunately I am the side effect queen, if there is an adverse side effect to be had, I'll have it! Within 3 hours of taking the medication I woke up from a peaceful sleep (for once) with the worse stomach cramps ever. Within 2 hours of that I was vomiting and had diarrhea that went on for about 4 hours...and yes it was going on at the same time, fun fun! I'm curious, has this ever happened to anyone else?? My Rhuematologist explained to me that it is an adverse reaction and that it doesn't happen often, but unfortunately does happen. :'(
I have to say too that it's very difficult to try and explain to others what is wrong with me because they can't see anything on the outside, other than for me being the weight loss. And I have to say I can not believe how rude people are. I mean really, would you go up to someone and ask them"What's wrong with you, you've gained 20 pounds, are you ok?" No you wouldn't so why do people think it's ok to say to me "What's wrong with you, you've lost so much weight, are you ok?" I feel like it would be faster if they just said I look like crapola. :(
Or I love their fix all advice, I just need to eat more and then I'd be all better. Ok sure. Thanks for that gem dandy piece of advice. Ahhhh the frustration.
I think I'll end it here and say sorry I've rambled on so long. I think I just feel like finally it's a safe place to vent and speak freely with people who get it. It's so hard talking to the "Never been there crowd" as I like to call them. No matter how much I try to explain it to them, they just don't get it. And then they turn around and offer me some cake. ;)
Again, I'm looking forward to learning from all of you about your experiences, how you've dealt with family/friends and any tips you can give me. Thanks and Merry Christmas!!
Dawn
Hi Dawn :)
Welcome to Sjogren's world! I'm sorry you have Sjogren's but glad you got a diagnoses. Nothing worse than doctors suggesting it is 'all in one's head!!'. Too many people go through that experience.
When you were put on Plaquenil were you told to taper onto it slowly? Other people have had a bad time with although it seems the majority are OK.
I was told to taper on to it really slowly and to always take it with food. I started on half a tablet every second day and built up from there. It took about a month before I was on the full dose.
It certainly doesn't suit everyone though.
bringing up kids with SjS is hard. I used to find activities for mine to do that they enjoyed but that I could watch. Didn't have the energy to join in with them. They all turned into nice adults though!
I hope you find the site useful. I'm sure you'll make friends here.
Take care - Scottie :)
Hi Dawn
I'm so glad you found us - but sorry you had to! Thanks for telling us the story of your journey here - it's not 'rambling', it's perfectly fine to tell us the details and help us get to know you. You've definitely found a safe place and new friends who understand how you're feeling and empathise.
I had a wry smile to myself when I read about other people's comments on how you look. I find that people will tell me I look great when I'm having a really bad day, almost as if they can make it true by saying it. It's kindly meant but somehow makes things harder. Some of us here actually look really well despite feeling dreadful which makes it difficult for friends and family to accept quite how ill we are. My appearance has changed quite a lot due to meds - especially Prednisolone - and weight gain followed by big weight loss all in the space of a year. I know appearance is a minor issue compared with others but it seems to symbolise how SjS changes us.
Keep posting and letting us know how things are going.
Thinking of you - Chickpea
Hi Dawn
Welcome to the group. I'm sorry for your diagnosis but so glad you found your way here. Like many others it sounds like you have had a struggle to get a diagnosis but at least now you have a few answers as to why you have been feeling so poorly.
I'm sure you will find this site a great source of support and information, feel free to vent, ask and join in any time.
wen x
Hi Dawn
A big welcome from me too. I don't envy you, having to look after young children - but then, I'm older than you, and much as I love me toddler grandchildren, they wear me out.
Welcome to the family.
Kathyx
Dawn,
Welcome! We are here if you need to ramble or rant...we all have done it!
RobinBat
Welcome from me too. We are all in the same dry boat here. I have learned a lot since becoming a member, and it makes one feel better to know they are not the only one going through all that we go through alone.
Merry Christmas
Jules
Hi Dawn and welcome to Sjogrens World!
Thanks for introducing yourself to us here and sharing your story.Your right...you have found a safe place to vent and everyone here understands...its a safe and supportive place to be! And don't ever worry about venting or "rambling".....we all do it from time to time and we also are there for the others when they need to get things off of their chests....so you are just fine...no need to apologize!
Welcome to the family!!
Thank you to all of you for your kind words :) I am so happy that I decided to search to see if there was a group of others who were dealing with the same issues as myself. It may sound self absorbed to think that with our world being so large and so many people in it that I may be the only one going through something, but no one I know had ever heard of this, including me. So I was feeling pretty alone in it all, and yes others comments at times were about to send me over the edge. Thank God I have a great family and that my husband is awesome.
To answer your questions on the Plaquenil, no I wasn't told to taper up on the dose. I was told to take the entire pill, which was 100 mg and that was all it took. The dr did mention that eventually he'd like to get me to 200mg but eventually never came. He did say that possibly my IBS complicated it and caused such a harsh reaction to the Plaquenil. All I know is you haven't been truly sick until you can say "Everybody out, two exits, no waiting!" ;) It was also the time when I knew for sure I was loved by husband (ok I already knew it) but any man who will stay in the bathroom with you through that has to be either a paid professional or in madly in love.
Also, is it just me or do you find staring at the computer to be more drying for your eyes? I have a harder time now spending too much time on the computer and that's tough because I am the twins room mommy and coordinate all parties, etc. so I am constantly hitting my eyes with the drops to lessen the sand feeling. Also constantly looking for something to combat the fatigue and caffeine just isn't a really great option. I'm a water person and rarely drink pop so what do you do to help with that? There are times/days when I dont want to move but I force myself to get up and do the 101 things I have to do but every step feels like I'm walking through quick sand. What's that all about? :(
Anyway, thanks again for all the warm welcomes. I am so happy to have found all of you!! Merry Christmas to all of you!!
Hi Dawn,
Let me also welcome you to the SJS World and family!
It's so good to hear that you've got a good rheumy, I tell ya, it makes a heck of a difference!
Have you seen an opthamologist about your eyes yet? If you have, what did he say about them?
Again, welcome, and hope to chat with you soon!
Take care -
Patze
Patze,
I'll be due for another eye exam in the new year and plan on discussing my new diagnosis with him then. The last time I saw him I wasn't sure that I had it yet although like I said my Rheumatologist was...must of frustrated the heck out of him! If only he knew the run around I'd been given...well actually he knows some of it but I'm careful to bash doctors when speaking with one. ;)
Anyway, I had an appt' set up when I started the Plaquenil as they told me they would need to monitor me closely for any changes with my eyes but being that I didn't do well with the med I didn't have to keep that appt. Do you think the eye dr would have some better options for me? I dont want to do any type of "procedures" as I've been through 2 surgeries in 2009 and really I hate being laid up and having everything rest on my hubby's shoulders.
Thanks!!
Dawn
Dawn,
See about plugs...they do it right there in office, no prep no nothing but some numbing drops...No side effects(well sort of could feel them for a few days, but after I got used to them, don't even know they are there) I use much less lubricant drops during the day and just generally my eyes feel better. :) :) :)
Worth asking about them.
Good Luck.
RobinBat
Dawn,
I think you are going to be so much fun to know! I love your posts and how you express yourself...re; your first rheumy....I hate that guy, lol!
For what it's worth, I think you should try the plaquenil again. Using a razor blade and tapering up from a shard a day and on a full stomach, if you can. I have the nausea/ibs too (along with the rest of SJS miseries) and struggled with it a lot in the beginning of Plaq therapy. I had to take Phenergan (med for nausea) for a while. And it took about 8 or 9 months to feel the beneficial effects instead of the usual 6.
Welcome to the family, kiddo!
Janna
Hi Dawn,
Welcome to your new Sjoggie family. Bet we weren't all on your Christmas list, huh? :D We are a literal worldwide family, young, old, older ( ;D), female, male, employed, unemployed, retired, etc. As different as we all are, we are alike - we are all on the Sjogren's road together. Some of the members are tour guides - they've been around a while, been traveling this road a bit - they look out for the newbies and welcome them with a bottle of water, preservative free eyedrops and arms open wide. ;D Everything is new right now - yet, I bet you are putting pieces of the puzzle together and they seem to make sense now the more you learn about Sjogren's and your body.
You mention about the computer and your eyes. I quote "do you find staring at the computer to be more drying for your eyes?". Well, I can tell you one thing for sure . . . DO NOT STARE AT THE COMPUTER SCREEN! Blink, blink, blink. We tend to NOT blink when looking at a computer screen. That is what contributes to more dryness. I also find the brightness of the screen, or certain colors bother my eyes too. The color red is really hard on my eyes.
If there is a specific subject you wonder about you can put key words into the search box in the top left of this screen and it will bring up previous posts. Can't find what you're looking for? Just ask - someone will come along and offer advise, suggestions, etc.
I think you will fit right into our family - just like a long lost sister. Dust off your ruby red shoes and we're off on the yellow brick road . . . oh wait, that was Dorothy, and your name is Dawn. Oops, me bad!! LOL
Bucky
Hi Dawn,
WELCOME!
You asked what was going on when you feel like you're walking in quicksand? F A T I G U E!!! It's a fatigue that's hard to explain, you did a good job of it though.
You also mentioned how hard it is to keep up with you children's activities, well mine are all grown and I enjoyed their childhood, I had plenty of energy only suffering with pains here and there, fatigue not a problem until 2 or 3 years ago. Now I have a 3 year old grandbaby that I love to death, she loves to come to visit for a month or more at a time, I love for her to come because I don't get to see her often she lives in another state. The problem with these visits is they break me DOWN. I do mean DOWN. I end up with terrible flares every time to the point I can barey lift my head.
The last time I thought I wouldn't recover. Well guess what she's on her way back!! And I am SCARED! I would like to believe this visit because she is a little older might be better, but I can'thelp but to plain my doctor's visit in advance just in case! How can you tell your grand baby NO you can't come to Grandmomma and Grand daddy? Plus I miss her just as much as I hurt when she's here and many months later, really bad! ::) ::) ::)
This visit is only for 2 weeks,I hope!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YALL PRAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Bernice,
Does your grandbaby's mom come too? Maybe she can help out some??? If not maybe you could get a friend or friends daughter to help out for a few hours a day to give you a rest.(teenager) Just a thought. Try to rest up and maybe get some good books or videos that you can watch read together so you can have some quiet time...puzzles good too. Will be thinking of you. Hope it's better this trip. Hugs, RobinBat
Welcome to the Soggie Group. I am fairly new also having been finally diagnsed March 2009.
My gp in 2003 decided my bloodwork #s were strange enough that durn it he was going to find out why. That is when my journey started of going specialist to specialist. I had for a year one that told me he was sure I had some type of cancer but I wasn't sick enough and didn't have the symptoms he thought I should have. :o Hits you like a ton of bricks especially when you think you feel just fine the the dr says you are not! Well I had a time but got my head around that. Later my gp sent me to a teaching hospital (bunch of specialist under one roof that actually LIKE puzzles!). That is where I finally got a firm diagnosis at. I see an immunologist, pulmonologist and rheumotologist now. I would recommend a teaching hospital to anyone as they don't "ignore" you.
I am not on any special medications for SJS but the immunologist has me on "maintenance antibiotics" 2 diff ones at 2 week intervals during the winter. I also do sinus flushes (not icky) which has really cut down on my sinus infections of which I was getting 5-7 a year. Didn't keep me from getting a bout of the flu though. Sigh! ::) So far my worse symptom is tons of teeth cavaties. I am now noticing my "flares" as before I figured it was just allergies.
Sorry you have all this stuff but glad they actually "diagnosed" you. Now you got a label and doctors can't say it is all in your head and you are definitely not alone anymore.
Wow, I have been AMAZED while reading everyone's reply's/personal stories. Each one I can find some thing in it that's me. One thing that surprised was hearing about the sinus flushes and repeat sinus infections, that's a Sjogren's thing? I had no idea!! I have yet another sinus infection right now and they are miserable! I've had my sinus's operated on twice this year because of major problems and also an osteoma removed twice that sat in the sinus cavity itself. But anyway, I had no idea that was part of it...yes another piece of the puzzle that makes perfect sense!!!
And I had to smile about the "Dont stare, BLINK BLINK BLINK" :D Just reading your comments Bucky again I had another moment of yes, exactly! I just asked my husband if he or the kids adjusted the brightness or color on the computer screen because it just seems so dog gone bright and it bothers my eyes. Of course they hadn't and everyone else said the color and brightness levels are fine for them.
Bernice I hope things go well for you and your grandbaby. I know how tough it can be and like I've said the worse thing is that no one can see whats wrong with you so they aren't the most understanding at times. Now dont get me wrong, I dont want sympathy from people, not at all. I'd just like them to stop looking at me like I just need a sandwich and all my problems (and heck maybe the worlds) will be solved!
Thanks for the idea of the plugs...I will mention it to my eye dr during my next visit and see what he thinks and hopefully I can get some relief there.
As for re-trying the Plaquenil, ohhhhh boy, I'd be a little afraid to be honest with you. :-X After my exit only bathroom experience where I was probably the sickest I had ever been, and the week that followed wasn't much better stomach wise. It literally took a week before I could eat right again and to stop having stomach pain and cramping. I lost about 7 pounds after that lovely experience. When I went back in to my Rheumy dr's office to see him I asked him if it was something I said during my last visit to make him angry. ;) Fortunately he gets my sarcasm) He assured me that no he wasn't being the ultimate passive aggressive doctor and I told him good then I wont be the ultimate passive aggressive patient, so I'll actually sign the checks when I mail in the bill :D
I've also read under some of your names the different things that you have an it's interesting to see how much we have in common. (Raynaud's, etc) This site really is a whole new world for me and while it wasn't on my Christmas or "bucket list" I'm still glad to be a part of it. Hey if you have to dry you might as well do it as one big dry collective group! :)
Dawn
Dawn,
I know what you mean about being amazed at all the things Sjogren's can cause. When I first read this site, I decided everyone here was a hypochondriac!!
It took a while for me to realize Sjogren's is a systemic disease and therefore all body parts/systems can be affected. As time went by, I realized I share many of the issues described here! And like you said, it started to make sense to me.
Welcome to the family, my dear!
Janna
No her mom does not stay, this time she will be dropped off to be picked back up two weeks later. The last time, this past summer I went to get her, well I met them in Fla. for a weekend at Disney. I think the 12 hr. plus car ride and full day at Disney in the blarring sun was enough to do me in, then on top of that I brought her back with me so there was no recovery time in between. She stayed for about two months, I think can't remember! During this time I went into a flare that was the worst I have ever had. My baby likes to stay in my lap alot kissing and cuddling, I love this, BUT she has this habit of poking one finger in my arms and legs, well I got so sore I couldn't stand to be touched, pain that made my eyes roll in back of head. ::) ::) This went on the whole time she was here! She has another grandmother here, but she don't always want to go with her. i THOUGHT I WOULD GO INSANE WITH PAIN! There was no escape, she slept with me (body slamming me all night) and spent every waking moment with me on the go, moving nonstop or poking THAT FINGER. That child stuck her one little finger in a part of my knee cap that made me drop to floor, I was messed up from that move alone for months!
I have always wanted a grandbaby, I L O V E this child to death! Just the thought of her makes me HAPPY! She is my pure JOY! BUT I AM AFRAID OF HER!!! HER LOVE HURTS GRANNY!!!!
Welcome Dawn, from a fellow newbie! The plugs are absolutely wonderful, if you can find the right 'mix' of plugs for you (uppers, lowers, both, plugs with smaller drains, etc);. I have been a little high maintenance in this area accordingly to my specialist...
Kim
Kimbo,
Your avatar is hysterical!
Janna