Emotional Roller Coaster

[kristinnelson]

I received my diagnosis last week and started on a small amount of plaquenil.  I'm been so hopeful since then.  I've felt so much better and been so much more active.  The med is also supposed to help treat my neurological sleep disorders so may actually help me sleep better.

I have also been really concerned how much neurological damage has been done--I've barely been sleeping for the last few months as my stomach has been terrible and I've been unable to keep down my dopamine medicine.   Will I be able to sleep again?  Could I think clearly again?   I keep wondering how much of my intelligence and energy will come back.  Will I be able to finally be useful again?  (I left on medical leave for a JD/MBA program three years ago when I was so sleep deprived that I couldn't function at all.  I've been through 7 sleep doctors since then and I am on )

I was walking out in the San Diego heat wave and I felt "happy".  It felt so good.

Then I started feeling guilty for being happy when I'm not doing anything useful.  Then I got mad at myself for having such ridiculous expectations for recovery.  Then I just ate a bunch of fattening comfort food and felt...lethargic, but better.

I'm generally a doer, not a crier and I hate that I'm putting myself through this emotional roller coaster.  (Although the restasis must be working because I'm able to tear again!--See I can see the bright side of things.)  I am normally a thinker who can rationalize and practically "will" myself to be realistic.  I've been able to tell myself for a long time "Que Sera"--whatever will be, will be;  I know I will feel worse if I pressure myself too much. 

I don't understand why now, when I finally have some hope, that I am grieving over all that I have lost.  I'm not used to being overwhelmed with this much strong emotion.

Can any of you help me deal with this crazed amount of difficult and strong emotions?

[CAT1962]

kristinnelson,

You just HAVE to take it one day at a time. I don't know of anything else. I, too, have chronic fatigue...YEARS of no true sleep. I take 400mgs of Plaquenil. It can take months to work. I stared almost 2 months ago. I have some dry mouth, dry eyes, horrible dry skin and nose, and dry...ehem. ONE DAY AT A TIME. Don't drive yourself crazy. Be glad for the good (better?) days! Come here often...a nice bunch of folks here. We care!

XOXO,
CAT

[kimbo]

kristi,

Stress and fears can cause  what we call a flare. It can make a visions cycle, one chasing the other.
You are processing new health issues. Fearing the unknown.
I am so glad you found this Forum of sjoggies as we refer to ourselves.
You will find lots of answers to your questions. Use the search button or just cruise around here.
I hope you find comfort, encouragements and knowledge that you need to understand.
Each one of us has varying issues and levels of flares at intermittent times.
Coping will come as you understand better.

Welcome and Blessings, kimbo

[quilt4fun]

Kristi,
I understand your emotional roller coaster. I, too, have been through that.  God bless by husband, he has been so patient with me. Sleep deprivation, mood swings, general yuckiness were the norm for years.  I was diagnosed a little more than a year ago,  and put on Plaquenil, it has helped a lot.  I agree with Cat--one day at a time! 
I have found this forum great for sharing info and sometimes just reading helps through those low times.  Stay with us!

[Joe S.]

I liked what Kimbo had to say. You may also wish to read "Feeling Good" by David Burns. This is a book on CBT (Cognitive Behavioral Therapy). The exercises will help you deal with the ups and downs of Depression, Anxiety, and Grief.

Don't panic - this just makes the ride worse
Breath - breathe in "I am", breathe out "Calm" is a simple meditation that helps you manage pain and anxiety
Be kind to yourself - read "Spoon Theory" http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf  It provides an understanding of how your roller coaster may function.

Some of us have posted in our signatures what we are taking.

[Scottietottie]

Hi Kristin 

Welcome to Sjogren's world. It's not unusual to go through a period of mourning after getting a dx of SjS. It's grieving for lost health and you may find that you go through the 5 stages of grief - but you WILL come out at the other side. There is life after SjS - it just takes time.

Plaquenil usually takes up to 6 months to work. It certainly helped both my energy levels and my 'brain-fog' - but it took time. Like has already been said - take it a day at a time.

Sjogren's is very individual and is not at all the same for everybody. Some are iller than others, some are drier than others, some suffer neurological symptoms and others never do. It's completely unpredictable. The one day at a time bit makes sense because there is no point wasting time and energy worrying about things that may never happen. 

I assume your thyroid was tested when all the tests were being done? It is not unusual for autoimmune diseases to travel in 'packs' and I felt at my very worst when my thyroid was out of kilter. Thyroid meds helped tremendously.

I hope you find the forum useful.
Take care - Scottie 

[Bucky]

Hi Kristin - welcome to the forum.

As Scottie mentioned, one can go through the 5 steps of grieving when receiving life-changing news or diagnose.

*  Denial
*  Anger
*  Depression
*  Bargaining
*  Acceptance

Some people go through all 5 stages, some only one or two.  There's no right or wrong in the process.  With some, it takes longer to transition through the stages than others.

Being dx'd with a chronic illness can be overwhelming.  Looking back on what your plans were for your life and how they have been drastically changed - can certainly rock your world.

Unfortunately, this Sjogren's journey is much like a roller coaster.  There will be times when you are feeling good and enjoying the ride.  Other times you might not feel so well and will be down in those valleys.  Like the others have mentioned, keep your focus on one day at a time.  Don't feel guilty for celebrating the good times . . . enjoy them!!

We're a worldwide forum made up of both women, men and young people (all ages from 6-80+) who are on this Sjogren's journey together.  Please know, when you come here, WE GET IT! 

Check out the social board where we talk about all kinds of things non-Sjogren's related.  We talk about TV shows, share laughter, share news of weddings, births, deaths, hobbies we enjoy, etc.  For myself, I don't dwell on the fact I have Sjogren's.  Sjogren's is what I have, it doesn't define me!

Take care and remember to breathe.

Bucky

[Meld256]

Kristin,

Welcome! 
You are exactly right- this diagnosis can really an emotional roller coaster.  We understand!

I think so many of us go through the first thought of "Thank God they found out what's WRONG with me" and there is relief in that.  Then you begin to think about this being chronic, and that can be frightening and a little overwhelming.  We greive over things we may no longer be able to do, and this is all natural. It's part of the process...

Bucky and everyone else is right. We need to take each day as it comes. Some days you may feel great, so enjoy them! Some days you might not feel so great, so remember they will end soon. 
Just find out all you can, ask anything here, we're all here to help one another.  There is hope for you to feel better, treatments like Plaquenil, and support here.

What you're feeling is normal.  It's a lot to deal with, so give yourself a break and take care.
Keep posting! Melinda

[Pisces24]

Oh Wow!   I can really relate to the "Emotional Rollercoaster"!!!  My emotions were better AFTER getting the diagnosis. Most of us go through "H" trying to get it.

Mine took 6 years. I thought I just felt "normal" but my blood numbers were all wacky and my gp (bless his heart) was bound and determined to find out why. Thus I went the specialists rounds. I'd see one for a few months, they run some tests, and maybe even have me on a med. Then the dr would say I didn't need to come back. I would think whatever was done I was "cured"  . THEN my gp would say 'nope things are still not right"  and send me to yet another "specialists" and the whole scenario would start all over again. Up and Down at least 15 times in those 6 years.             I even had one tell me he was sure it was some type of cancer but I wasn't sick enough but if I had "xyz" symptoms to run to the emergency room.!  After 6 mos of waiting for the ceiling to cave in, I finally decided I was no longer going to put my life on emotional hold. Everyone comes to that decison in their own time.

It helps to 1) put your feelings down in writing aka these boards and 2) talk to someone who understands. With family you either get too much into (wondering how so-n-so will take it) or the ones that don't want to understand or deal with it. Here you get the best of both worlds. We've all been there and understand.
Welcome to the Family!

[Meld256]

Pisces,

You make a great point about this forum being the best of both worlds! Absolutely true!

Here we can rant if we need to, and share our fears, concerns, and questions. We don't need to worry about someone not understanding, or not believing us, or being pitied.  What we have is *complicated* by a wide array of symptoms, aches and pains, infections and annoyances.

We come from different backgrounds, and yet we are all dealing with the same things. I feel so blessed we have this way to share with one another.
Melinda