STILL IN DENIAL, PLEASE HELP!

[patzi]

Hello everyone!  Just wanted to pop on and share a little about my new found unwanted  sjogrens friend.  We are not getting along by any stretch of the imagination.  In fact I still cant believe he/she just decided to pop into my life and make it a living heck. I have been dealing with chronic fatigue and sinus infections for most of my life. I of course attributed that to laziness and a deviated septum and just learned to live with it.  When I went to my GP for my annual physical, everything seemed fine according to him. including all my blood tests.  So he sent me on my way with a bill of good health.  But before he did, I requested a blood test for RA because I was having pain in the joints of my fingers.  If it were RA then I wanted to prevent any damage that could occur.  Well never saw the results of that test but was referred to a neurologist for the pain I was having in my left leg. My neurologist ordered a full lupus panel and two tests showed up positive.  According to the lab results, my Ana was 15.4 positive (normal range according to test is 0.2-12.0) and my SS-A was 297 positive (normal range 0-97).  So I was sent to a rheumy. He of course said it could be Sjogrens being that I fit the criteria more or less for that versus Lupus. 
Sorry trying to make this short but it doesn't seem to be working out. Anyways I was put on Plaquenil.  Took that for a week and stopped because it exacerbated my symptoms, particularly the brain fog.  My Rheumy said to wait a couple of weeks to see if I felt any different without the med.  Well I am going on my second week and still feel everything I felt before the plaquenil except for the brain fog.  Which appears less since stopping the med.  Anyways, I guess I am wondering if I really have this disease, if two tests can be the confirmation of an autoimmune disease whether its lupus, sjogrens, or whatever.  I am somewhat angry because no one I know has a clue what sjogrens is and how it can affect your body as well as your mind.  My apologies  for venting.  This post probably does not make any sense.
Well anyways I suppose I will give Plaquenil another try when I go see my rheumy on March 2.  I just keep thinking that this could all just me in my head.  I don't have anything dry up or down, well my left eye a little.  I think the most irritating symptom is the Brain fog and the fatigue.  I am a very outdoorsy kinda girl and have not been able to hike, bike, or exercise for that past few months.  Am I lazy or is it the disease. 
Thank you for listening.  I don't feel alone today in my disease because I have this websit with some pretty awesome people.
Patzi

[Joe S.]

It sounds like you are lucky to get a Dx so quickly. Most that I know take several years. Now find what treatment works best for you. You will go through the stages of grief as your life changes. This site has a lot of caring people on it that can help you to make it through your AI challenges.

[wednesday mc haggis]

patze   *hug*

lassie its not easy, sure dont we all know it aint, times you want your mind to stop and it wont, and times you want your mind to go and its fogged.

I play my own devils advocate , when i get to the why me stage , i ask myself why not me ?? , it happens to ppl , alot of chronic illnesses do , so why not to me ??

Its alot to take in , my guess is planequil takes time to get into your system and sideefects to settle down, from what i read 4/6 months till its begins to show any benefit at all in some .

i guess i was so worried i dying to be honest as things just seemed to go from bad to worse, now at least i have the joy of knowing it a flare and not anything deeply sinister, your head is going to be shken up, your body certainly is being and somedays your head just follows suit, but trust me life isnt over for you, its just adapting, seems for me ive had to get out the thinking god my lifes over, into ok its not over im just being forced to evolve, which is easier said than done.

What i have done is come here and share my fears, and when everyone posts back to say im there i know how you feel, or ive been there and got through it, it helps, its best medecine anyone can get, and no one minds here , let it all out, daily if you have to , keep a diary of emotion, write in it daily your fears and thoughts, and i bet in 3 months time when you look back at that diary , when  in the middle of the fear, you realise just how far youve come and how your fears hagve been conquored at least for a while, and from that take hope and strenght.

Yip no one seems to know about sjogrens, very few ppl even care to want to know about it, GP`s /PCP `s seem to know less than me and i know nothing in comparision to many here, so you ll guess how little they seem to know, did find my works occupational health doctor knew quite alot about it, he was busy giving me a right lecture about being off for " 4 months now " and when i mentioned sjogrens and being sent to rheumy , his tune changed, family dont seem to want to know, its a horrible lonely scary time, but we can listen and help get your mind back down to size, they get mine back into size.Good times are comming, life with sjogrens is ups and downs, but never lose sight that there will be ups !!

Thoughts with you patze  , keep talking to us

T x

[Seeker]

Howdy patzi, first all I want to welcome you to the family.  You will find your story is not much diffrent than many here in the forum.  Its good to know that your doctor has gone the extra mile for you.  Many here had to go through this for years, before they were diagnosed or treated.  Sjogren's is a very sneaky disease.  It can affect each person differently and the severity can vary also.  Unfortunately Sjogren's is not yet a well known disease.   Most people are ignorant of the disease and its symptoms.  Any way don't ever feel afraid to vent your frustrations here.  You will find here support and understanding . 

I have be on Plaquenil since before Christmas.  It is just now starting to make a difference.  So if you do start it again, just be patient and let time take it's course.  Any way I am glad you found us and keep those posts coming.

Seeker

[Patze]

Yep, I also know what you mean about trying to function when the brain is on a semipermanent vacation!  I can't tell you how many times I've had people ask me questions about something I've done a thousand times, and I couldn't answer them as I couldn't remember the answer.  Oh my, the looks I get!

Hang in there Patzi, it's a hard road, but you can do it.  Please remember to come here to rant, rage, vent, or just hang out as there is usually someone about.

Take care -

Patze

[patzi]

Wow!  How great it is to wake up in the morning and find responses from your post!  I just love it here.  Thank you all for listening and I will post about my next rheumy appt.!

I like the journal idea and will definitely do that as well.

Love and Hugs,
Patzi