Maybe it just hasn't sunk in yet. I know the stages of grief apply to a chronic illness diagnosis, too, and that denial is one of the stages. But I keep questioning my rheumie's diagnosis and hope he was wrong. I do have dry eyes and mouth and fatigue. The only really positive bloodwork I had was 1:1280 ANA. My Sjogren's anti SS-A was 40 and the SS-B 6. Sed rate and creatinine were normal. But he looked me right in the eye and said. "You have Sjogren's." He handed me a brochure and told me to research the disease and educate myself. "You need to rest. I'll give you Plaquenil and Evoxac and see you in four months", he said. If I had a lip biopsy or Schirmer's test, would that be definitive? Should I just accept it and go on with life? I'm afraid my days of distance running are over...
babs dont think anyone missses the denail stage , then the barginning, if only it was this and nott hat, then the anger, depression and then acceptance, being honest though im no authority id say right now you were barginning , ive been there , its a rollercoaster ride of emotions on finding out whats what, but really it will all come togethe rin the end, just accept that you will go though alot of emotions and talk them out with us, i helps to get it all out and hear your nott he only one its held me up the last few weeks
T x
Hi Babs :)
Denial is a stage most of us go through. I think what may help you, is to hold onto the fact that although this is a chronic illness, what you are suffering from may not ever get any worse. It could but it may not. You may even feel considerably better once the Plaquenil works. I'm a firm believer that as it is possible to have 'flares' it is also possible to have remissions.
Educating ourselves is all very well but naturally all the sites about Sjogren's, go into all possible aspects of it. Many, many people don't get that ill.
Take care - Scottie :)
Thanks, Scottie. For some reason the doctor did say "you're easy to treat." Maybe he somehow can tell that I have a mild form of SS?
babs, I think you have been extrodinarily blessed to have a rheumy who has taken the correct blood work and has identified your disease process. He is also treating you right off the bat with the meds that work. I would skip the kuo biopsy since you have a pretty much definitive diagnosis. The Schirmers test can be done at your next eye exam.
When you take Plaquenil it is good idea to get a baseline eye exam with a very good eye doc or opthalmologist. Plaquenil can affect the eyes occasionally but is quite rare as the dose that sjoggies take is quite low.
Regarding the denial. I don't think I ever went through denial as I felt so rotten for about 40 years and doctored for years trying to find out what was wrong. I was so glad to have a diagnosis that I just skipped the denial part. I always figured it could have been a whole lot worse. Good luck Irish ;D
Irish, you're right---I should be glad to get a dx, unlike some people who suffer for years not knowing. Thanks for reminding me of that :)
Babs, I'm with Irish! Be thankful for a firm diagnosis! So many have to go years muddling through without any difinitive diagnosis and still feeling like heck. The treatment for Sjogrens is really simple. Not the disease, but the treatment. I've been on methotrexate and Plaquenil for two years now. It has taken care of most of the joint/muscle problems. It does not help with eyes or mouth dryness.
I would Never, Never get a lip biopsy since you have a diagnosis, unless you have a need for useless surgery! ;D
Lucy
confused, I can imagine that many people have the denial in spite of not doing it myself. THe one thing I would remind you of with the denial is to avoid putting yourself in a vulnerable position that could result in harm.
By this, I mean things like going for a long walk and not having the strength or energy to get back home. Sometimes when it gets dark areas become much more dangerous. Another thing would be driving a long distance for a meeting etc and end up pooping out on the way home, etc. There are things that can sneak up on us unaware and it pays to remain cogizant of the fact. Good luck. Irish ;D
I haven't been in denial since I was in Egypt ;D
Epson- Glad to see your sense of humor is not suffering from all you've been going through.
Babs- I'm with Irish on being careful, especially about driving. I love to take off for a day and spend time with friends about 3 hours away. On one trip, though, about half way home, I realized there was no way I was going to make it all the way home. Luckily, I was on the PA turnpike and there was a hotel at the next exit. I still make my trips - but now I carry a little overnight bag in the car so that I can stay with a friend if needed, and I make sure I have enough money on hand for a hotel, just in case. By being prepared, I still enjoy my fun but can do it without the worry of getting stuck without my medicines and something to sleep in!
In a way, it's good that you recognize you're in the denial state as you will probably move through the other stages of grief as well. I know I did when I first injured my back 16 years ago, then again when I was finally diagnosed with Sjogren's after about 5 years without a firm diagnosis. We're here to help if you need us at any time,
Tracy
I have been in denial for several years now. I am currently trying to grasp my illness and be better prepared and more proactive in my health. It lasts for everyone different and I hope for you that you can find some peace and move forward in your health issues and learn as much as you can. This is the place to learn! Good luck, Cortnee.
Epson: groan....LOL! Thanks for the laugh.
Hi Babs,
It's been nearly two years and there are days when I'm still in denial. Since I don't have dry eyes or mouth, the most common symptom of SJS, I can't help but think the rheumy is wrong somehow. Yet, the Plaquenil and Imuran are helping, so I guess that gives me my answer.
Your reaction is very common.
I will always be trying to deny my way out of all this. ;)
susanep :D
Think most of us have been where you are now - I didn't want to accept that I had an illness that couldn't be got rid of by a course of antibiotics or similar, and would be remaining with me for the foreseeable. I'm glad I went through that phase, as it made me reasssess things and realise what's really important to me - what I can let go and what I can't. I truly hope you find your way to acceptance, and find your own coping mechanisms.
Wen x
I am in denial I guess as well. My blood work all shows I have Sjogren's or something else - but I don't feel completely horrible. I don't know how others feels how would I know if I am more tired than others, or my eyes or mouth are more dry. I don't know. I don't think they are more dry except for sometimes or when the doctor looks and says they are. I have pretty much no joint pain - sometimes I do but sometimes is normal I thought (i do mean only sometimes too rarely, except now that I am pregnant lol).
So to me I don't really feel like I have something wrong with me (except my Uveitis in my right eye) so to me taking Plaquenil and getting these blood tests done every few months seems crazy. I do take my meds - most of the time - and I always get the blood work they order but I just don't completely realize something is wrong with me b/c I don't FEEL it really.
Oh and try to convince my family something is wrong - yeah ok, they really think I am nuts and make this stuff up. But if you have the blood work that says something is wrong - it is really hard to completely deny it. Blood doesn't lie
Hi freifamily :)
You take the Plaquenil to hopefully keep you feeling as good as you do now! I was assured by my rheumatologist that the vast majority of people with Sjogren's didn't suffer inordinately. He didn't pretend that dry mouths or eyes were comfortable but he reckons that most people live pretty normally with them.
According to him, joint pain isn't inevitable and CNS involvement is rare as is organ involvement. Maybe many of the people who don't feel too bad just don't bother to join up in here. It's possible.
I hope you never do feel really bad and that it stays in the background rather than taking over your life!
Take care - Scottie :)
I am in no state of denial and am thankful for a firm diagnosis. Lucy
i guess thinking on it all i did all my denial before sjogrens was ever suspected, i knew there was summit strange, that i had IBS ear problems, certain amount of deafness, at times tiredness not likw now, but as irish said i thought everyone felt that tiredness .sicca symptoms , my mouth was last to go dry in a way, had dry eeys and nose for 30 years so i cant remeber being any other way likely why that doesnt really bother me much, dont know any different , aches and pain i put down to my job , 6 months ago it floored me, and docs gave many diagnosis`s , the pain of vaginal dryness and node pain down there made endometriosis and CFS a diagnosis ,until the CNS symptoms kicked in and until the gyn doc and me ruled that out and sjogrens in, i had mentioned SJS before to my GP and was brushed off , so in a way all my denail and bargaining was done before DX , now im being listenned to and seeing Rheumy next week , it was scary at first, but god a relief to say yay im not mad after all , and since we need to be monitored im glad od DX to keep an eyes on my liver kidneys etc, i think being undiagnosed is way scarier, and dangerous
T x