Lesson learned

[missy1306]

I was diagnosed in January and I started taking Plaquenil in March. By May I was feeling great!! And this was a good thing because both of my sons graduated, one from High school and one from college so May was a month of travel, hosting out of town company, parties, etc...all on top of my full time job. On top of all that I had to travel for my nephew's wedding. I was actually feeling great through all of that, I was even exercising! Then it hit. It started with a cold that came on June 3rd but it was just a mild one. As soon as I started to feel better from that cold, my joint pain kicked in with full force...actually cried myself to sleep a couple nights. My eyes got so much worse...even with the plugs in and on the Plaquenil, I felt worse than when I was first diagnosed! Then 3 days ago I got slammed with another cold...this time a really bad one. I feel awful. People keep saying to me, I have never known anyone to get a 2 colds in 3 weeks. Me either. I have my regular appointment with my Rheumy on Friday so I haven't called them, but I have learned a valuable lesson - I cannot take this disease for granted. Even when I feel good I have to guard my health and take care of myself.
I am just hoping the Plaquenil will take over again once I get over this horrendous cold. Is that how this works? Will this flare just calm down and I might feel good again like I did in May? I know I over-did.    Thanks for listening...most people in my world really don't understand. How could I go from conquering the world in May with the medicine working to feeling like I am 90 in June. That is Sjogren's I guess.

[JannaLee]

Oh Missy!

I hear ya!  Yesterday I was wondering if I dare to post on here that I'm feeling pretty darn good and working full time (outdoors) going door to door doing a survey for the University of MN.

The humidity is as near 100% as it can be without actually raining and the temps are near 90 degrees.  And the SKEETERS!  OOOOOfdah!!

But somehow I feel okay!!!

Thanks for your story and the reminder to rest between periods of activity.  It's just so tempting to DANCE when you feel good.

Janna
PS I pray you get over this and begin to feel better very soon!

[missy1306]

Thank you Janna!! Now if I can retain the lesson learned and follow with wise moderation! I am so glad you are feeling good and I hope it continues. 100% humidity wow, I live in Colorado so don't see that!

[missyb]

oH MISS MISSY,
Yes, pretty much that's how it goes. it's so dang frustrating. You feel "normal" and think you can do whatever and it comes back to show you otherwise.   My family (ie husband) gets frustrated too. He thinks I should never have another "flare" and if I do, the Dr is doing soemthing wrong. Can't seem to get it in his brain that it is really really really never going away either
Hugs,
other Missy  .

[dbab]

oH MISS MISSY,
Yes, pretty much that's how it goes. it's so dang frustrating. You feel "normal" and think you can do whatever and it comes back to show you otherwise.   My family (ie husband) gets frustrated too. He thinks I should never have another "flare" and if I do, the Dr is doing soemthing wrong. Can't seem to get it in his brain that it is really really really never going away either
Hugs,
other Missy  .

I hear you.  My husband always asks when I go to the doctor are they going to do the antibodies tests to see if they are gone now. 

[missy1306]

Ha ha, my husband tries so hard, but a great example is last week, my left hip was really painful, so I was babying it and had a little limp, sort of sympathetic mixed with exasperation, he said, "What is wrong with it? I looked at him and said, "Um I have Sjogren's." On good days it is easy for him forget I guess. 

[Bucky]

Missy1306,

I'm glad to hear that you were feeling so good for all the important events that went on in May. 

Sorry you are feeling under the weather right now.  Colds should be in the winter months only . . don't ya think??!!  My hubby decided to share his cold with me too . . . grrrrrrr.  My hard part is the swallowing and sore throat.   I just keep sipping water and tea all day long. 

Hope your cold goes away quickly. 

Good luck with your Rheumy app't. on Friday.

Take care,
Bucky

[Bucky]

JannaLee,

I thought SKEETERS were MN's state bird!!!!    

Bucky

[missy1306]

Bucky I completely agree! Summer colds are the worst!
I do not have to much trouble with dryness in my mouth and throat - my big problem with dryness is my eyes and sinuses and I know the cold medicine is not helping. I am just trying to go overboard on the drops and that helps a bit.

This too shall pass, thank you for your encouragement.

[missyb]

I know, it is hard for them. Always one thing after another. When they see you feeling well, they must think "oh good, that's fixed" so when it comes backthey think someone screwed up because that was supposed to be "fixed"..

[MusicGuy]

Missy - good luck and i hope things improve for you.  I'm still jealous you had such good results with your treatment before the cold.  As for your husband, hey...it's a guy thing!  lol... actually, the same happens for me with my wife as she expects the meds should be having better results for me.

Dave

[dkpowell]

It's almost scary how you can cruise through here and read your own life sometimes...I have been going through the same thing. I went on plaquinil in December, by March felt great! Started having trouble with my teeth - went downhill again. I got over that, and spilled my meds, got them all mixed up and in the wrong bottles - wasn't getting the plaquinil - bottomed out again. I got over that, and now yesterday and today have come down with a summer cold (NOT FAIR - cold weather is for cold's!) and now I feel like I have never been on the plaquinil again. I am exhausted, shaky, nauseous - a total wreck! Man, I get tired of this up and down stuff. Like you said, we just have to remember to take it seriously - it is formidible when it raises it's ugly head. When it's quiet, you get to thinking it's not so bad...I can handle this. That's when it kicks back up and shows you what for! My husband is actualy better about it than I am. I will feel pretty good, and be buzzing around, and he'll say " you had better slow down before you flare again". He can see it coming on before I do. No suggestions or help - just kind of seeing my life in yours...

[ruby52]

I love the reply "um I have Sjogren's"that's the exact answer I have been looking for when my DH asks me what's wrong.Right now I mumble my back hurts,legs ache,exhausted ect. and it leads to why is that or what's that about.Not a conversation I want I was just talking out loud.
I just told him yesterday I feel this summer is going better then usual.I guess he didn't agree due to his tone when he asked do you really think so.A bout with vertigo followed by a bad cold along with insomnia and various aches and pains in the evening I guess it would seem strange to say that but yeah I really think I'm doing better this summer lol.
                                                                        Ruby

[missy1306]

I agree that the ups and downs are the toughest part. Somehow when I feel good I feel like I better get every bit of living in that I can, like I should catch up. But boy does that backfire.

[dkpowell]

That's why my husband tells me to SLOW DOWN - LOL - He has seen it too many times!! Somehow, I think it will be different this time. (not based on past experience - just wishful thinking!) Oh yeah, he's right. I have to jus stay with a steady pace even when I feel good - so that way I can continue to feel good for a while.