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Sjogrens Topics => Living With Sjogren's => Topic started by: JannaLee on May 12, 2008, 06:12:40 PM

Title: I've had a no good very bad rotten day!
Post by: JannaLee on May 12, 2008, 06:12:40 PM I went to work today even though I was feeling absolutely terrible and ended up leaving a couple hours early because my nausea was so bad and joint pain was making me walk funny...which scares the children (I teach elementary school grades k-3)

but first I had to stop at Target and get some more of that very expensive Biotene stuff to keep my mouth from cementing shut tonight...and because my teeth are suddenly FALLING APART!...

then I remembered I had to pick up my husband's dry cleaning because he is out of town and will not have time and he ABSOLUTELY HAS TO HAVE a clean uniform first thing tomorrow...

And the darn grocery store is next to the dry I had to get some BLOODY BLEEPIN' dog food because we were out this morning and the poor thing ate tuna for breakfast (she's a giant golden can imagine the size bag of food I had to get)

I gulped air the whole way home because I'm really really QUEAZZZZY (could someone tell me how I still manage to be 20 pounds overweight?!) to find several phone messages that I have to go back to school to deliver decorations and award certificates that someone suddenly needed 2 days early!  This cost another 1/4 tank of gas which I cannot afford and more gulping of air.

In the mail came a high school graduation invitation (which means I gotta send a gift) from the daughter of people we haven't seen since they borrowed my wedding gown 19 years ago and never returned it! 

Well the invitation was the last straw.  I just started crying out of pure rage and frustration and self pity!!


Sorry for scream-typing all this.  I know you guys have your own burdens.

This stupid disease hit me like a freight train about 4 months ago.  It seems I'm in a nasty mood a lot lately.  Are feelings of anger a side effect of Plaquenil?
Title: Re: I've had a no good very bad rotten day!
Post by: eyeamdry on May 12, 2008, 06:49:47 PM
Oh, JannaLee, you've had a dilly of a day!  I think one of those days can kill the spirit in the best of us, at least for the remainder of the day.  The next morning usually looks a little brighter after some sleep.

It's tough having to do all the chores for the family and try to work, too.  When I get upset, it makes it worse to concentrate on the things I have to do.  Go easy on yourself.  The world will not fall apart if your dog has to eat tuna. 

As to the graduation invitation, I'd guess you "don't" have to send a gift.  I think people having graduations and other celebrations will notice fewer guests attend because the price of gas is just too high to go anywhere you want.  I'd send a nice card and let it go at that.  I was thinking that I don't have any graduations or weddings this summer and boom, just find out about a "surprise 50th anniversary" for in-laws.  That means a 400 mile round trip, plus a night in a motel.  That will be one of the few trips this summer. 

I hope you do have a better day tomorrow.  Lucy
Title: Re: I've had a no good very bad rotten day!
Post by: Jag on May 12, 2008, 07:27:38 PM
Sounds like a really, really rotten day you have going!  :-\  I guess the first thing is get a small bag of dog food so you don't have to carry so much. If you REALLY have to go back to the school... or if it could wait until tomorrow then push it off. As for the graduation gift? Send back an RSVP card with a note attached about wanting back your wedding gown (I think 19 years goes beyond 'borrowed').
Plaquinil added to my already prevelant gut problems. Could be adding to yours. I found the only thing that helped was phenegran. Call your doc and ask for a script. It can be called in, just take half until you know if it's going to make you too tired. Sounds like your other half needs to step it up and help out so you aren't left with so much to do. If you're running low on dog food (when you only have 3-4 days left, then pick it up at that point so it doesn't hit you on a bad day). Better yet, have your other half pick it up.

I used to have a magnetic tab of paper on the fridge to write out grocery items that I was running low on, or things that were going to be needed to be done soon. That way everyone can add to it (if you can get them to) and take care of it or assign it to someone else on the down days. I really hope that your days get a little better, and I'd talk with whoever put you on the plaquinil ASAP about the terrible nausea... maybe they can wean you on it, or give you something to better manage the nausea while it's bugging you.

Good luck,
Title: Re: I've had a no good very bad rotten day!
Post by: LenV on May 12, 2008, 07:43:22 PM
Your post caught my eye.  I read that book to my son for many many years.  And even now, I read it to myself every so often.  I'm sorry you are having a very tough time.  Sjogren's isn't for wimps.  Hang in there Sweetie!

Title: Re: I've had a no good very bad rotten day!
Post by: YICKelly on May 12, 2008, 07:53:06 PM
Oh JannaLee, and it is only Monday!!  I am so sorry.  It is so frustrating to live a life that never seems to be on track.  I pray that tomorrow will be better.  Please know that we all understand.  Try to keep your humor and get a good night's sleep. 
Title: Re: I've had a no good very bad rotten day!
Post by: kimbo on May 12, 2008, 08:02:02 PM
I can't add too what all these wonderful ladies had for you. I truley am sorry for your bad day. I hope you find time to take care of yourself.
Title: Re: I've had a no good very bad rotten day!
Post by: Katybarstool on May 13, 2008, 12:17:38 AM
Hi Jannalee

I hope you are feeling brighter and have a better day today.

Title: Re: I've had a no good very bad rotten day!
Post by: Rambling Rose on May 13, 2008, 06:09:01 AM
What a horrible day.  There are days when it just doesn't pay to get out of bed, and clearly you had one of them.

My thoughts were much like Jag's.  Send them a wedding card and tell them the wedding dress they never returned is your gift to them. ;D

Title: Re: I've had a no good very bad rotten day!
Post by: Tamik on May 13, 2008, 07:42:53 AM
Those "terrible, no good, very bad days" stink.... Sorry you are had one. 

I read this some place and it has stuck in my mind and I tell in to myself on those types of days..

"When you get to the end of the rope, tie a knot, hang on, and SWING!" - Unknown

Now if you are nauseaus, the idea of swinging does not sound do good I am sure!  I take this to mean that I need to do something (such as RELAX) or think about something positive. I feel better afterwards.   

Tami K
Title: Re: I've had a no good very bad rotten day!
Post by: Annj5 on May 13, 2008, 08:11:24 AM
Hi Jannalee,

Adding my hug to the rest of the responses here!

In response to your question about plaquenil - I don't believe that anger or mood changes are a side effect of this drug (mods??). I do know that when my energy levels plummet, this is always accompanied by feeling very sad, angry, and frustrated. I call them my meltdowns, and early on in my diagnosis, I had plenty of meltdowns until I learned that there were some things that I just couldn't do anymore.

It's hard to accept the fact that you can't be everything to everyone anymore. I struggled along with work for a year after diagnosis, but eventually my fatigue forced me to quit. Since then, I have learned a great deal more about my limitations and the value of pacing myself and being stingy with my energy.

Here's hoping you get some rest and feel better soon!
Title: Re: I've had a no good very bad rotten day!
Post by: Annj5 on May 13, 2008, 08:14:10 AM
Oops, meant to also add in previous post - one side effect that plaquenil does have is nausea. Many people have commented on that here. It helps to take it with food, and if you are taking two pills, to take one in the morning with breakfast, and the other with dinner in the evening.

Just a thought. There are other comments regarding plaquenil in the medications section of the forum.
Title: Re: I've had a no good very bad rotten day!
Post by: DanzGrl on May 13, 2008, 11:13:52 AM
I hope you are having a better day today!

My teeth were also falling apart...

My dentist recommended.....
Biotene Mouthwash, Sensodyne toothpaste (I have really sensitive teeth now) and sleeping in my whitening trays (without the whitening gel).  The trays help protect them from the dryness.  Don't forget to floss...
Title: Re: I've had a no good very bad rotten day!
Post by: season nunley on May 13, 2008, 11:16:09 AM
Hi Jannalee, I can definitely sympathize with you. I have a lot of bad days. Sometimes i just want to sit and cry and sometimes i do just that. There are so many things that I want to do and I find it difficult. I even enjoy mowing the grass and now it is so hard for me. My face swells and the pain in my face is horrendous. My eyes burn and sting and just adds misery on top of misery. So now I look out the window at my husband while he mows and feel very guilty because I can't help much with the outside things which I have always enjoyed. So Jennalee, hang in there and be good to yourself. When you have a really bad day-do something for yourself to make it a little better. Have two dipps of butter pecan ice cream, sit and watch your favorite movie, buy yourself a pretty bouquett of flowers and just sit and admire them. God bless you and I hope the rest of the week is better for you.     Season
Title: Re: I've had a no good very bad rotten day!
Post by: JannaLee on May 13, 2008, 07:22:48 PM
For starters Lucy, the word "dilly" got me smiling!  It is a charming word and you are charming and very dear to send me your empathy!   

Jag, where was I when they passed out the "marriage smarts?!"  You are absolutely right!  I copied and pasted your remarks in an e-mail and sent it to my husband who apologized profusely!  WOW!  Then I called my doc (3 hours drive away) and demanded he call in a script for phenergan!  Which he did!! Double WOW!

Billye, YIC, Kimbo, Kathyx, you are all the dearest of dears for commiserating with me.  It is beyond kind that you all spent time and energy reacting to my meltdown (perfect term from Julia) yesterday!  I simply cannot express how much it meant to me!

TamiK and Bonnie, I read your replies to everyone in the teachers lounge today and got a great loud hoot of laughter from everyone about "swinging and nausea" and more hoots and agreement about the wedding dress remarks!

Season and Julia, You make a good point when you talk about acceptance of the disease and the physical limits that come with it.  There is validation from you that we have to grieve to some extent  (definitely a big issue for me)  I split my plaq. today (200 mg at breakfast, 200 mg at dinner) AND took the phenergan.  I'm feeling about a jillion times better today.

Danz, I've got some teeth trays!  I'm going to try them tonight right after I floss!

Thank you, Thank You, THANK YOU ALL SO MUCH for so many hugs and so much emotional support!  I hope I can be there for you sometime!

Title: Re: I've had a no good very bad rotten day!
Post by: salsen on May 13, 2008, 11:03:54 PM
Jannalee sounds definately like a Blue Monday for you!  Carry some crackers with you.  I've been needing to do that lately since suddenly that quesy feeling seems to hit me at the oddest times. 
As far as invites from people way in the past I simply ignore those.  This is suppose to be a way to share happy news with family and friends.  This sounds like just a way to garner more money.  One year my husband and I spent over a week trying to figure who a grad was.  Finally he took it to work and with other co-workers was able to figure out who the boy was.  We hadn't seen him since he first started school or heard from his parents in over ten years.  Senseless!
Hope the rest of your week is much better !!!!!  Take care.
Title: Re: I've had a no good very bad rotten day!
Post by: Katybarstool on May 14, 2008, 12:04:22 AM
Hi JannaLee

Glad the hugs helped and you are feeling brighter today.