I'm In Denial...

[SeaBreeze]

Hi my new found friends... I need to get this off my chest...
I was just reading some responses to my post regarding the many specialists my rheumy wants me to see how overwhelmed I feel about having to have all of these doctors.  But at the same time feeling grateful and hopeful that they can help me feel better.
I suddenly realized that I am not handling this diagnosis very well.  I'm having a very difficult time accepting all of this.. I realized today that I'm in flat out denial. I've been coasting along taking the Plaquenil, doing a little research, dropping into support forums, with same approach you would have for a homework assignment. I've continued to work though miserable, I've left my husband and moved out all in 2 months... But within the last couple of weeks my symptoms have forced me to sit still and rest which then leads to a busy mind and I start worrying... but its also led me to this realization that I am in denial.

I guess its because the entire process happened so fast and the diagnosis of MCTD came from out of left field just back in August this year.  The thought of me having an autoimmune disease, a lupus, or other condition was the last thing on my mind when I went to the GP with knee pain.  But once I got talking with him about my symptoms and of the weird diagnosis' I carry we ended up with a list of symptoms and associated disorders of AI that read like a medical book.

I just have to say I am NOT ok with this at all... Well the brave face is gone and I've been crying all weekend unable figure out why.  I finally realized that I am very angry that I have this disease and really feel bad for myself... I've down-played this diagnosis and my recent horrible symptoms down so much to myself, to friends and family and all are under the impression that its not that serious disease, but I'm finding out at a rapid scary pace, that it is serious, and it is scary.

All I can think about is the different stages of grief well I'm in the denial stage for sure...
thanks for being here...

[Pooh]

SeaBreeze,
I can understand why you feel in denial.  I think you are moving into the greiving stage now, with the crying and angry.  Even though I have pretty much accepted my problems with this disease, I still regress quite often to earlier stages. 

You have to take this journey one day at a time, one step before the other.  Most of all, don't let it get you down.  It's a challenge I know, but you can do it. 

Keep a sense of humor about the 'ologists.  Think of them as new friends who are there to help you.  Some you like more than others, but in the end they will all play a part in your care. 

And on top of all of this, YOU HAVE US!!!   When you're here, you're never alone!!
Hugs, Pooh

[Scottietottie]

Hi Seabreeze 

You have no idea how common your reaction is. Like Pooh says - it's a grieving process. Doc's are meant to make us better - right? And then there are the times the doc's can't - but they can alleviate our symptoms and SjS is interminable, not terminal.

I remember feeling totally fed up and angry and ill and what eventually pulled me into the next phase of the process was my kids getting ill. I had two get quite life threateningly ill in a matter of two years. they both got better thankfully but it put my SjS/lupus/thyroid stuff into some kind of perspective for me.

This forum is a great place to come into and vent - float ideas - ask questions and also to laugh in!

You will adjust to this in your own time. There is life after SjS!!!!!  We all go on our own journey to get there.  We're here to hold your hand along the way!

Take care - Scottie 

[Patze]

Hi SeaBreeze,

I also think that you're moving into the grieving stage, it's tough, and I'm sorry you are experiencing it.  I've been dealing with AI's for more than 3 years now (I was told for several months that there was nothing wrong with me prior to an endo discovering the Hashimoto's), and I still go into the grieving state from time to time.  It's hard, and I can imagine much harder it is with all that you've gone through lately...whew, I don't know how you're doing it!  

Pooh's right, take it one day at a time, one hour at a time, or one minute at a time; whatever helps you.  And yep, you have to keep your sense of humor!  Hey, I've learned to not take myself too seriously, I've always figured that if I could laugh at myself, I can't be that nutty (well certifiable that is!)!

Yep, you do have us!  Come often to talk, scream, rant, or rage - or just hang out as there is usually someone about.

Please hang in there, and "when you're here, you're never alone" - thanks again Pooh!

Take care -

Patze

[lynnmarie219]

Hi SeaBreeze!

I'm so sorry that the "ologist" post may have scared you.....but like the others have said.....what you are going through is very normal.....its part of the path to acceptance!

I was where you are right now too as were so many of us here! I cried and thought I was surely going to die at first and then the "why me" syndrome kicked in. Then I got angry....I wasn't a bad person, so why the heck was this happening to me??...it was not fair! And on and on and on.

But finally I grew to accept that this was still me....with some adaptations but still me! And like the others said....I still slip back to the earlier stages from time to time as well. I was just recently diagnosed with Diabetes on top of everything else and there I went off again......thinking why the heck did I get everything in my family history?? Why me again??? But I have it and I am trying to deal with it the best I can....since I cant change it.

I too tried to hide it from family and friends at first and still do at times now but its just because some people don't get it.....but I try to explain it as well to people if they REALLY want to know about me!

Hang in there...allow yourself to go through your feelings and it will be ok.....it really will! And in the meantime, be good to yourself, come here to talk to friends and try to form a "real life" support group around you as well!  As for the sense of humor....I use it all the time.....it has been my lifesaver! As the saying under my posts says:

"If we couldn't laugh we would all go insane". I think that is true!!

[JannaLee]

SeaBreeze,

I am so sorry you are feeling low.  We all know EXACTLY what you are experiencing!

When I went through this phase (about 4 months ago) everyone rallied round me and loved me through it.  I don't know what I'd have done without this place.

Then I went into the RAGE phase and scream typed my anger everyday.

Now I'm in the BARGAINING WITH GOD phase...knowing it's not going to change my diagnosis...but still a little niggle wishing the doc would call and tell me there was a huge mistake.   Of course I promised to quit cussing...but the **bleeping** phone never rang...

Sometimes I will feel overcome with such deep and profound feelings of loss.  At these times I try to remember there are worse things and, like it or not, this is my journey.

Love and understanding to you, dear Breeze.
Janna

[pudmott]

Hey seabreeze,
I'm kinda going through what you are now. I've had the OMG i have this disease and totally overwhelmed by it and comsumed by it. THen the worry of i can't manage at work what the heck am i going to do, then the soldier on its not going to get me until recently and i mean in the last two weeks. i realised i have to make concessions or my body makes them for me. I wrote recently where i got really angry and i said well ok you might have my body and do weird things with it but you will never get my spirit. I will play this game buti will play it on my terms. So i have dropped one day a week at work and made some adjustments. Im not happy about it but its what has to be done for now. I haven't done the crying why me thing yet but i kow i will. i think mainly because i have not got a definitive diagnosis yet and i have so many unanswered questions but i will and like you the grieving process will start.
What you are feeling is quite normal although that doesn't make it any easier to bear. Coming here will help though and feeling the love and compassion of these wonderful people is great for the soul. KNowing you are not alone in this journey and that no matter what you say or feel here. There is smeone who will understand. Think of your ologists as your artificial immune system. The one inside you is a bit dodgy so you are going out and gettng a better one in the form of your ologists. The good thing about this is that if you don't like part of your artificial immune system you can replace that part. That's where you get the control. Its a lot to take in but over time it will start to roll for you. There will be periods where like others you will regress a bit but then there will be good times. savor those and make the most of them.
Don't let this bugger beat you seabreeze. Let the crying happen and know that the emotons you are feeling are perfectly ok.
Hang in there mate. This part will pass and a new one begins.
(((((((((HUGS))))))))))

Pud

[pudmott]

Patze honey

YOU ARE CERTIFIABLE!!!!!!

Love ya

PUd

[Patze]

Silly Pud!


                                                                                             

Have a good day my friend!

Patze

[gsmraxe]

Hi my new found friends... I need to get this off my chest...

I just have to say I am NOT ok with this at all... Well the brave face is gone and I've been crying all weekend unable figure out why.  I finally realized that I am very angry that I have this disease and really feel bad for myself... I've down-played this diagnosis and my recent horrible symptoms down so much to myself, to friends and family and all are under the impression that its not that serious disease, but I'm finding out at a rapid scary pace, that it is serious, and it is scary.

All I can think about is the different stages of grief well I'm in the denial stage for sure...
thanks for being here...

I found out really quick too.  I went in for leg  numbness and came out with SJS.  I've been really healthy all my life, and just found out in August as well.  I too am in denial, I'm hoping to hear that it was all a mistake when I go on Wednesday to a RA appointment.  I feel that this is wrong,, someone screwed up some tests, it'll turn out negative next time.  I try not to think about it, but it's difficult not to obsess sometimes. 

I found this on Wikipedia:

   1. Denial:
          * Example - "I feel fine."; "This can't be happening."'Not to me!"
   2. Anger:
          * Example - "Why me? It's not fair!" "NO! NO! How can you accept this!"
   3. Bargaining:
          * Example - "Just let me live to see my children graduate."; "I'll do anything, can't you stretch it out? A few more years."
   4. Depression:
          * Example - "I'm so sad, why bother with anything?"; "I'm going to die . . . What's the point?"
   5. Acceptance:
          * Example - "It's going to be OK."; "I can't fight it, I may as well prepare for it."

Kübler-Ross originally applied these stages to any form of catastrophic personal loss (job, income, freedom). This also includes the death of a loved one, divorce, drug addiction, or infertility. Kübler-Ross also claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person will always experience at least two.


Best of luck to you...

[Scottietottie]

Thank you for posting those examples. 

The other thig is that there's no set time for anyone to go through the various stages. We all do things in our own time and at our own pace. Sometimes we take one step forward and two back as well!

Take care - Scottie 

[irish]

We all handle getting a health diagnosis like this differently. For me, I was totally thankful to hear that there was something wrong. I had been having problems for so many years and then in 1996 things really went to pot and I doctored
big time" and it was almost like an obscessive endeavor by hubby and I to find out what was going on. To finally have all these diagnoses has not changed my health status that much but now I know that I am not "nutz".

Remember that when we get hit with these things it doesn't pay to make "knee jerk" decisions about almost anything. We become so overwhelmed that making decisions that are life altering are the last thing we should be doing. Some things may be things that we have been working on for a long time, but it may be that our health impacted our relationships and reactions more than we every realized.

We need to draw upon all our family and friends for help and if they don't want to help then we have to go elsewhere. This site is the ELSEWHERE!!!! It helps to come here and vent and get different opinions from different people. That doesn't mean that we have to do what is said on any of these threads, but it does give us all more information upon which to consider and make an informed decision.

To all of us with autoimmune issues we must grieve when we need to and laugh as much as possible. We must do what we can for as long as we can. As autoimmune disease survivors we need to keep our lives going to the best of our ability. If we have to change a lot of the ways we do things, so be it. At least we have the choice. Some people get to the point where no choice is EVER possible. We can help make our lives better by our attitude. This is hard---but life is always hard. Having to fight like this makes us true survivors and tough as nails. ARen't we great!!!!!! Irish

[Scottietottie]

* rapturous applause!*   

Hey Irish - were you ever a cheerleader?   

Take care - Scottie 

[gsmraxe]

We need to draw upon all our family and friends for help and if they don't want to help then we have to go elsewhere. This site is the ELSEWHERE!!!! It helps to come here and vent and get different opinions from different people. That doesn't mean that we have to do what is said on any of these threads, but it does give us all more information upon which to consider and make an informed decision.

I'm very glad this ELSEWHERE exists too.   

[pudmott]

I love ELSEWHERE because other than my partner in the absence of family this is my family.

Irish- I love what you said. Your posts are so insprational and keep reminding me to keep on keeping on even though i ave all these things happening and no dignosis. I know it is something. We just haven't found that something yet. I can't have this much stuff being all in my head. There just aint enuff space in that little cavity. Although in the absence of a brain i have more space than most.

Keep up the good fight everyone. Its ok to get down and bewildered and lost, just don't drown in it. Don't let this crafty little bugger get the upper hand. PLay by your rules.

PUd