Hello, I am not so sure were to start an introduction... I mean it's easy for other message boards, but this one is a lot more personal, and for some reason it's making me really uncomfortable... I wasn't sure at first, but I'm getting to the point where I need someone to talk to, because everyone around me is getting further and further away from me because they don't want to deal with it, and I'm at the point where I have no one to talk to unless I lie and say that I'm feeling perfectly fine, because as soon as I say I'm not feeling well or I hurt, the conversation abruptly ends.
I am female, 26 years old. I was diagnosed with Sjogrens I think... when I was 23... I don't remember... I know now that I've had much longer, now that I know the the signs to watch out for all all that, but I was always very quiet when it came to my health, and always, always had this incorrect assumption in my head that if something was bothering me, it was just something that everyone went through too and it was stupid of me to think I would be going through anything that any other normal person wouldn't go through... which was actually quiet the opposite.
It was my dentist that saw that something was wrong. (I live in Canada, but I don't have dental health care, so I didn't go for two years) but it my teeth were getting so bad that we had to go, they all have very visible and large cavities and it was getting to the point where I could no longer eat anything because it was too painful. Now I had a pretty healthy diet. The only time I ate any kind of candy is on Halloween when there are left overs from the kids that come to the door (usually not much) and pop I stopped drinking as soon as I saw the first huge cavity, and had been sticking to drinking only fruit juice or tea when I went out. So my dentist said it was VERY abnormal for someone to get their teeth as bad as mine in just two years, even if they weren't taking care of them or watching what they were eating. He also mentioned that my mouth was very dry, said something about me not producing any spit and mentioned that he thinks that I may have sjogrens. Then got me an appointment with another doctor to confirm in. (the soonest he could schedule me was 6 months)
The doctor did some tests with me concerning my saliva glands in my mouth and told me that he thought that I had sjogrens too. But then every doctor I was sent to after that didn't believe that sjogrens was the cause of my deteriorating health because of my age, they always kept saying it was common in woman over 40, and though woman under 40 CAN get it, it was very unlikely for me at 23, the next year it was unlikely for me at 24 and the year after that it was unlikely at 25. Each doctor I went to kept sending me to get the SAME blood tests done over and over again... the previous test were getting passes from doctor to doctor, but still they kept testing me for STDs, HIV or AIDS to see if that was causing it... It was getting frustrating, not only because I was doing the same things over and over again, but because it felt like they thought I was some sort of tramp because at my age it was more likely to be an STD then sjogrens. Finally I was scheduled to see a rheumatologist, but I would have to wait over a year before I could get in to see him.
So I couldn't produce saliva, I couldn't produce tears try as I might, I could hardly swallow my food my throat was so dry, and I rarely had to wear deodorant because I rarely would sweat either. My skin was always red, dry and itchy, and I was slowly starting to get increasing amounts of pain in my joints. And I still could hardly eat a thing because I didn't have the thousands of $$$ needed to fix all of the cavities in my teeth. Until I eventually reached it. My breaking point.
I had been working at a physically demanding job, my health was getting worse and worse. I used to walk or bike ride to and from work everyday, but the pain was getting worse, so bad in fact that I could no longer walk to and from work, and I was forced to sit in the lunch room until 5pm until one of my parents was able to pick me up. I only has a part time shift, I started at 7:00 and ended at 12:00, yet was stuck there until 5. Each day that passed I was in more and more pain, until I literally could not move anymore because of it, nor could I even lay or sit down without being in it. I usually have a high tolerance for pain, and I do my best to hide it (my family has gotten annoyed with me complaining... and when I was in my teens I lost a lot of friends because I would often be in pain, so I was no fun to be around because I couldn't do anything) But I had been in so much pain, and trying to hide it for so long, that I broke down crying and screaming because I couldn't get a chat program to work right. At that point my mom said that this was too much. She is the only one helping and supporting me the best she can with this.
She took me to the emergency clinic. Where again I was treated like dirt, I didn't know what to tell them, I didn't want to be there. All I could tell them was that I was in pain, which was the truth, I was in pain, and it was getting to the point that I could no longer handle it anymore. I had never been treated so rudely by medical staff, every person I went to scowled at me, and spoke in an angry and condescending tone of voice, they were all sure that I had come to get easy narcotics. "Oh really? You're in 'pain'?" Then talk all sweet and reassuring as soon as a mom came in with a baby with the sniffles, who's family doctor said that she had caught a cold but the mom was SURE it was more serious then that and warranted a visit to the emergency clinic. They made me feel like I had no reason for being there and was waisting their time. I wanted to go home, and I would have if mom wouldn't have been forcing me to stay there "You have every right to be here just as anyone else." she kept telling me. The doctor I got was also mean and angry I was there. "I'm sick of people like you coming in here and waisting my time, I could be seeing someone that actually needs medical attention." was what he said after looking at my charts. So they took some blood tests (again) put me on a painkiller though an IV drip, and have me lay down. A few hours later he returned, his attitude completely changed, said that the blood tests were showing signs of inflammation and he was right now on the phone with a rheumatologist, and I he would try to schedule me with him as soon as possible.
The next day I got a phone call, telling me that I had an appointment in less then a week, which was a much closer date then the 8 month date I had been given before. So I went there, asked that I get more blood tests again... and was told that I was suffering from Sjogrens, which had also lead to fibromyalgia.
I wasn't sure what to think, I was so scared that everything was all in my head, always being juggled around for years by doctors who didn't know what was wrong or didn't believe that was what I might be suffering from, but I was also upset... and angry, because to my understanding fibromyalgia was what doctors label you when they couldn't find out what was wrong with you. So it very well could have all been in my head.
I'm still lost... and I don't know what to think... and at the same time I have no one to talk to about it, because everyone I know gets annoyed when I talk about my health... granted I put up with them complaining about the ex-boy friends or family that they hate, how their birthday was "The worst ever this year" or go on and on about a TV show they watched, but any mention that I might be in pain or not feeling well and they get angry at me for bringing it up and the conversation I had once been in with them abruptly ends. I seem to be in an age range where most believe illnesses are unacceptable to talk about and if you have them you keep it to yourself, like as young adults you are invincible to any kind of illness, and if you aren't you darn well better still act like you are and not mention it to anyone.
I guess I just want people that I can talk about normal things with, without worrying over them getting offended by me saying "I'm having a rough time actually..." or "I haven't been able to sleep for two days now my skins been to dry and irritating, I can't get to sleep because I can't stop scratching, I've tried everything, changing my sheets taking bath after bath, medication to make my sleepy, but it just won't stop." or "Today I was in so much pain I just couldn't move today, I ended up staring at the ceiling the whole day feeling like knives were stabbing into every part of my body." I mean, not everyday is like that, not every day I complain, but some are worse then others, and some are so bad, that you just need someone to talk to. For once I would just like a little understanding... something like "Well, we've all had those days, it sucks sure but you'll be just fine." or "If I can get through it you can." instead of being treated like I have a plague of symptoms that I can pass on through the sound of my voice or the words that I'm typing.
Anyway, thank you for hearing what I have to say, and hope you all have it in your heart to put up with me. I hope I've come to the right place anyway...
I am sorry if my post was difficult to read. I'm dyslexic so I'm not very good at reading through what I write... I've gotten better over the years, and ever since Firefox installed a spell check it's really been a life saver for me. (though sometimes I really have trouble telling the difference between some words, because they all look the same)
HI K, welcome to Sjogren's World...not only will we put up with you, my dear, we understand everything you're saying, and most of us have travelled the same road! I hope the ER doc had the grace to apologize, but at least he started taking you seriously and made a start on getting you diagnosed and treated.
You've raised a lot of concerns, and you will get lots of answers about all of them I'm sure, but one thing that jumped out at me was your concerns that " understanding fibromyalgia was what doctors label you when they couldn't find out what was wrong with you. So it very well could have all been in my head." That may still be the case with some doctors, but understanding of fibro has advanced a lot in recent years, and it's widely accepted as a real, debilitating, difficult to treat condition.
Hopefully your updated appointment with the rheumy will lead you to some answers, and some effective treatment, and get you started on the road to a lifestyle you can enjoy and feel some accomplishment in!
Hi K from another K
I have just read your message with tears in my eyes and a lump in my throat. I'm so sorry you have had to put up with this sh*%. It's just not fair - but then life isn't always fair, is it.?
The most positive thing you could have done for yourself is find this forum. Like Linda says, you are among friends here, who will listen to you, offer advice and support, tease you, and look out for you. There are many people on here who have had a difficult time with their illnesses, and whenever a doctor has not been able to explain their diverse symptoms. they have been told it's psychological, or they must be depressed. In my teens I had a lot of elbow pain that made my life a misery. It was diagnosed as neuritis. Not knowing what this meant, I went through three decades thinking that must mean I was neurotic. Now I realize it could have been the Sjogren's, and I've finally realised that it's not all in my head.
Thank God your mum believed in you. Maybe you can print some of the info from the boards to show the ignorant people?
Look after yourself sweetheart - this is not your fault. We will be here for you.
Kathyx
Hi K . . . welcome to the fold. After reading your post I just want to give you a big hug . . .. ((((K)))) . . . a cyberspace hug will have to do. :D I'm twice your age (did I just say that ::)) and can only imagine how challenging it must be to have Sjogren's as a young woman. I was "officially" diagnosed Aug. '08 - but have probably had it for over 10 yrs. I've had "issues" with my teeth and Sjogren's too . . not fun is it? Mashed potatoes, scrambled eggs, soup and milk shakes were my favorites for a while
I live in the US in Illinois. The membership here is literally worldwide . . . so we've covered the globe in having Sjogren's. I haven't met anybody local that has Sjogren's (unless you count one of our Staff members, Aliendog . . . she's another story . . .J/K AD!!).
Your mom is welcome to come to this site also to read the experiences of fellow Sjogren's members and perhaps it will help her to understand what you're going through isn't all in your head, that you really do have pain and limitations. Just a thought. ;D
Glad the Emergency Clinic doctor changed his attitude once your bloodwork came back. :D
Again welcome . . .
Bucky
Hi K :)
Welcome to Sjogren's world. I agree with everything everyone else has just said. Thank goodness you have a supportive mother!
I hope you find the site useful. It's certainly friendly.
Take care - Scottie :)
K,
We welcome you here, and we find you quite normal! It's nice to have a place where people do think our problems are normal, isn't it? You can come in here and vent or ask questions or just read other posts. I hope it is as helpful to you as it is to me. Take care, and feel better!
Cheryl
K
So glad you found this site. You are really one of us. I bet you made a lot of us remember our first day here. I have given this site out to a lot of people lately. Some have actually come in to see what Im talking about. (Funny the ones who care to learn) Let it all out here. We will listen and help when we can
Hi and welcome :)
I think you fit in very well with all the people on this forum. We all understand every word you have written. I particularly understand the not feeling comfortable talking to friends about your health, as that is something that I think we all go through - people having no clue as to what we are feeling like because we look ok. Even my letter from the rheumatologist which diagnosed me having SS stated that I looked good ::) People think if you look good then you must be well... how annoying is that???
I hope you stay and talk more, as this is such a good forum.
Wow - I had no idea about the friend thing but it's happening to me too. My best friend would listen to me complain and go for test after test - she'd continue to be positive and help keep me upbeat. However, when I call her with the diagnosis (I was crying in the car) she started saying that I had to look at the bright side of things - - she did not understand that I needed time to grieve about this!!! I am/was a singer!!! No saliva=no singing. I teach voice for a living - for me, this is a life changing diagnosis. I've been diagnosed since July 9, 2009. Just the other day, she told me that soon I'd get used to the tongue sores and the dryness and then hardly notice it!!!! WTF????????????? Now when she calls I don't answer - I don't want to talk about my health with her - - this was my best friend!!!! I don't want to talk about it with my parents - mom is 77 and dad is 80 - they don't need to know my troubles. They know about the diagnosis but they don't need to know the daily pain in the mouth and the often fatigue. I have other friends but I'm not telling many for fear it will get back to my college and I'm afraid my department chair will try to say if I can't sing an entire song, I can't teach. (it's not true - I can still demonstrate several phrases and my students are all still getting better). At first I was going to get off of this site - most of you have sjogrens that is far more advanced than mine. As I read about the troubles, I get scared. My dr says that it's possible I won't get any worse - it progresses differently for everyone. I'd like to believe that is a real possibility. I am not married and don't have kids. I live alone and am really dealing with this by myself. I think I'll stay on this site - especially after seeing how all of you react to K's frustrations.
Hi Voiceteacher :)
Please believe your doc. You may never get any worse. I, like you, am not as ill as many people in here. In fact with me - it's a condition - rather than an illness although I realise that it's an illness for many.
That doesn't mean that there isn't the dryness and the fatigue but I live a pretty normal life, though maybe on the 'lazy side'. ::)
Although SjS is described as progressive - it is usually slowly progressive and sometimes it's hard to tell what is SjS and what is ageing. I have aches and pains and I don't know which are attributable to SjS and which are osteoarthritis which isn't caused by SjS.
I think we all need time to grieve after the initial dx. We go through the stages of grief too. Some take longer than others. Acceptance does come eventually though - but give it time.
Take care - Scottie :)
VOICE TEACHER, I CAN RELATE TO YOUR ANGER OF YOUR BEST FRIEND. MY BOYFRIEND OF 10YRS JUST DOESNT GET IT NOR DOES HE WANT TO HEAR ABOUT IT. HE SAYS I JUST NEED MORE EXERCISE WHEN I HAVE SUCH TERRIBLE PAIN IN MY LEGS AND CARPUL TUNNEL WRISTS. CAN YOU IMAGINE, I Have a bad case, and i have hardly even talked about with him because he doesnt even ask what the doctor says nor go to the hospital with me when i have testing and or surgery. some people just don't get it. i am feeling angry and hurt and want to leave him, but after losing my job and now this, i am keeping my butt still for awhile, i have already started the paper work for ssi.
K,
Girl you done been through some stuff, haven't you?? But I tell you what it's gonna be alright! You now have your diagnosis, that's a lot more than some have. So NOW you can get the proper treatment you'll need to regain some of your life back.
Yes! It's hard being so young and scared with your body being out of whack and not knowing just what is wrong, it's hard at any age, but especially when you're young! One thing I will tell you that I tell my own kids and that's "ain't no giving up!" so continue to be presistant in your search for treatment. Let's hope this doctor you're about to is good, he or she don't have to have the best bedside manners, it nice if they do, but the most important thing is that they know who to treat you. Let them treat you and you can find friends some place else. So in this walk with SJS you will have to be a fighter because you just may come across a whole lot of rude doctors, nurses, friends and family. They will hurt your feelings, but just like your mum said you got a right to be here, and that here is where ever you legally what to or need to be!
My family don't always understand, I have came across some of the most rudest doctors and people. They may get away with it for a while, BUT when I get tired of it or just in the wrong mood for it that day I check that! I am determined to live a happy life and refuse to allow anyone to steal my joy! I get frustrated at myself sometimes because I can't always do the things I used to when I want to, BUT then I make assessments of doing things and do most MY WAY! Most people that know me know I have a sense of humor about most things so when they see me going about things MY WAY they know to laugh and let it go.
Your friends are young and they are NOT thinking and wanting to hear much about sickness, you wouldn't either if you didn't have to live with it personally! So understand and accept this and don't bother them with it. That's what we are here for! Get your treatments then enjoy as much of your friends as you can, when you can. When you are feeling well give them a call and see what they are up to and don't mention sickness. Explain one time to them that you may not always be able to keep up with them and when you are enjoy the time spent, when you can't tell them you will get with them later. They can not be blamed for being young no more than you can for being ill.
I was diagnosed in my early twenties, but was determined to live and fulfilled life and I have, I still do even with some limits! I went over twenty years with little thought to being ill except when I had to. I do just what I suggested you do, I do what I can, when I can! And make sure I enjoy the times I am up and pace myself when I'm down.
My heart goes out to you and everyone else that is just being diagnosed, but you have to get the will power to face this thing head on and though it would be great if everyone understood we have to face facts, they don't, heck we don't fully understand. Come here or to your mum when you are in need of an understanding ear, then enjoy the rest of your young friends in your life. You are young enjoy life as best as you can!
I know that at first it takes time to adjust, allow yourself this time, then know that you will live a happy life!
I just read the post about long replies, SORRY! I really want to reach K & Voiceteacher and all that is trying to come to acceptance just to let them know they will be O,K!
And you think you have a problem with writing? ??? ;D I normally would try to correct it, but I just wanted you to see my unedited version!! :o IN COMPARISON YOU ARE A GENESIS!!!! but you get the point! I hope! ;) ;D
God Bless!
Bernice
Bernice, you just keep writing those replies dear. As long as you break up the text with spaces, it will be just fine. We love your replies, they are so down to earth and caring.
K, I'll just add what I always have, "When you're here, you're never alone!". Please come often and rant, cry, fuss or just reply and help those of us who are hurting and needing.
This has always been a place for those who need each other and I hope it will always be.
Hugs, Pooh
K
Wow ! I hope you feel the encouragements.
I want to hug your mother for being your advocate, she forced the wheels to turn. Good for her. You had gotten to far beattin down to fight for yourself.
BERNICE, I agree with pooh. People like you keep this forum what it is.
We are here to mount up and lead a charge for those in need of understanding, encouragements, information, laughter and compassion.
K , A big welcome hug.
You have entered into a journey that first begins with a process of acceptance.
Grab up all the knowledge you can and enter that Drs office with some confidence and some understanding. with all your research let him know, you are taking responsibility of your health and you are prepared to understand his treatment plan.
Write down all your health issues of concern and begin keeping a journal of test and dates. So that you may use your time wisely in your office visits and you will not appear vague to your Dr.
Make a list of your questions. A confident attitude and a great smile, may keep the attitude of your Dr. on your track. :)
There is medications for dry mouth, RX and over counter. Biotene is a brand that has several products to treat dry mouth.
Tooth paste also there is RX and many over counter paste for sensitivity is best. Also a tooth paste with fluoride. A good perio rinse is a must for mouth sores, your dentist can provide an RX for this.
I chew a sugar free gum this is very good for encouraging saliva production. Chose one that does not burn or irritate your mouth.
Oh :) I hear geese flying over.... they are heading your way ;D . They must think its time to leave Ark. HONK HONK HONK here they come... :o
Where was I.... :) I am easily distracted. I wish I could blame that on being a sjoggie. :-\
For my dry skin I have discovered a product called tea tree oil. I found it in the hair section at wal-mart (we are not suppose to endorse products or stores here so I will not capitalize their names :D well actually this rule is to prevent people from coming on here and promoting for the purpose of sales ) Any way , it was with the oil treatments for hair care area, although it is for skin. I place a few drops on my hand and then squirt my lotion over it and mix it in my palms. Good lotions with cocoa butter are very good.
I hope your Dr gets you on something for your pain. :( I am so sorry some one young like you has to deal with such pain.
Bernice had great advice for the handling of your young friends.
There are other youngins on this forum family of sjoggies.
Please keep us posted on your visit to the rheumy and share your journey with us. We are traveling with you.
Blessings kimbo
Hi K and welcome to Sjogrens World!
I'm so sorry for all that you have been through....((((((((K)))))))))
You have found yourself a new family here.....and you can feel free to read all that you can and come here to ask questions, vent, or share stories and encouragement. We all understand because we have been there in one form or another!
Good luck at your appt....please let us know how it goes...and give your mom an extra hug for being so supportive and for believing in you!
Thank you so much everyone for your kind replies. You have gotten rid of any uncertainties I may have had about posting here, and now I certainly feel welcome.
I appreciate the comments and advice and will take it all to heart, the hardest part was admitting to myself that I could not get through this alone, that becoming even more difficult when I knew that most people that I know did not like hearing about it. Now with everyone here I'm very happy that I came to that realization and came here.
My rheumatologist is the one who suggested I look online for websites or forums like this, so that I could talk to other people going through similar experiences, but I never really took it seriously until now, not thinking that it would help that much. But I have been proved wrong with just my first post, as your responses, all of them, from the short to the long ones, have helped me already.
That's a smart rheumy! Give the doc a hand! (http://www.freesmileys.org/smileys/smiley-happy107.gif) (http://www.freesmileys.org/smileys.php)
Hi K,
Let me also welcome you to the SJS World! Please do peruse the board as there are just scads of great topics that you might be interested in.
I'm so glad to hear that you Mom is solidly in your corner, that is a big hurdle! And the rheumy, wow, your are really blessed! Keep that doctor!
Please come often as there are a ton of terrific members to chat with, and again, welcome to one of the friendliest boards!
Take care -
Patze
Hi K
I wanted to add my welcome and thank you for telling us all about your journey here. I'm glad you found a good rheumy eventually, and one who understands that there's support and information on the internet. I was really surprised when my rheumy suggested I got on the internet when he diagnosed me. I thought it would be full of scare stories and I certainly wasn't looking for a support group. Then I found this wild lot in SjS World and it changed everything for me!
I was 19 when I first got ill - with endometriosis - and like you I found it distanced me from my friends. I think Bernice is wise when she suggests that you only contact your friends when you feel well, join in the general chatting, and don't mention your illness or symptoms. They are not bad people - they just don't know what to say or how to react. They're scared maybe, and don't know how to sympathise.
Your Mum sounds great - give her a big hug from us! - and if she ever has any questions or needs any support while she supports you, tell her we're here for her too. Lots of us are 'women in their 40s' (the stereotypical SjS patients) which means lots of us have children around your age so we can empathise with how she's feeling.
Keep visiting us here, ask all your questions big and small.
Thinking of you - Chickpea
voiceteacher - one of the biggest changes for me over the past few years has been with friendships. I would never have guessed which friends would be there for me, and which would melt away. Don't give up on your best friend, but don't expect too much from her either. It may take her time to adjust to the changes in your life, including how much time you can spend together, or she may never be able to travel this road with you.
Take care - Chickpea
You've all given me some great advice. I won't expect much from my friends!!! I think you're right that I should only contact them when things are good. The part I don't understand about that is that when they are ill, I am the first to be concerned and listen to their complaints and be there for them. I guess that's the hard part.
Hi K and welcome. I, too, read your initial post with a lump in my throat. But like the others have said, now you've found this place you will come to see that there's a really great bunch of people here who can answer questions, sympathise, provide information and, most of all, understand what it's like. xx
Voiceteacher,
I once heard a preacher speaking about illness in a sermon. He said that when someone gets sick people will come to visit and support and care for that person FOR A WHILE! BUT if it's a sickness that lasts a long time most of those same people will soon fade away. Quit coming around!
Well sjogrens is a long term illness. People are only going to want to hear about it for so long, most are not going to want to continually slow their lives down to support us, even hearing about it too often, it takes a lot out of them mentally, especially if you appear to be doing just as fine as them. Though there are exceptions, very few! And it does NOT necessarily mean they don't care, it's just human nature and we can not truly feel others pain, once again especially when that sick person appear to be fine.
Sometimes we have to cut them some slack, people don't always KNOW WHAT to say. I know I have that problem sometimes when I want to say SOMETHING of comfort, sometimes I just don't know what to say. Some will avoid YOU for this reason too.
Bernice
K
I would like to welcome you to this site too, along with all the others. I was so glad to find this site too because other people who aren't going through what we are just don't get it. You can talk and complain about anything here, it seems no subject is taboo. Sorry to hear you have been going through so much at such a young age. I was 34 when I got RA and Pretty sure I had Sjogrens around or before that time, as I had a lot of dental and eye problems.
Anyway good luck at your appoinment and I hope things start to get better for you.
Jules
K
Welcome to to Sjogrens world
As I read your story, I remembered when I was dx with sjs. I am sorry that you have gone through this and feeling so alone. We have all had that struggle in one way or another. You do need to be strong and educate yourself about sjs. This site is great for education and understanding. I too am new to this site, and have posted a few time now. I am feeling more and more comfortable with the member and have learned a few things too.
Just remember that you always have a friend that will listen here at sjogrens world, and before you know it you too will be offering a kind word to a another new member.
Keep us posted when you see your doctor
Helen
K- we hear you!! You are in a place where you can say exactly how it feels. Everyone on here has times when they can't cope, hate being ill and are hurt by the response of loved ones. Keep posting on here - I know from experience someone will always reply and make me feel less isolated.
Glad you found us and look forward to getting to know you better XX Ailsa