Flaring - and No one to Blame but Myself!

Hey Guys -

I'm typing this veeeerrry carefully right now as I am almost completely locked up.  And you know what, for once I am not sitting here cursing R.A.  No - I am sitting here cursing myself, b/c I made a rookie mistake (ok, so we all make this mistakes: rookies, veterans, and everything in between).  In any case, I forgot to work within my limits.  I shopped, and shopped, and shopped some more.  Even when I knew I would be here now, in this fetal position barely tapping out some lines, I still shopped.  I think it was 12 straight hours of walking and driving and rushing my 2 year old to the "potty."  And yes, it is also my MTX night, so I was running low anyway.  You guys know what I'm talking about.  That last day before the injection and your feeling every second of it.  So WHAT was I thinking???

Although... I will say this... I got the new Vivienne Tam Mini Laptop, designed perfectly at under 3 pounds for we creakies.  It was an early graduation present from my husband!  Now I can actully CARRY my own laptop around AND it looks cool as ssssugar.  I'm so excited! I would jump up and down if I could bend at all whatsoever right now!  And FYI - for any of you thinking of going w/ the mini laptop, and I HIGLY reccomend it, they have them at price club, for a bah-gain.

Hugs,

Kati

Kati

Don't be so down on yourself, we all do this from time to time.  There are times we just have to in order to get things done when we have too.

Make sure you rest up and rebuild that energy level.

congrats on the mini laptop, they look so cute

Hi Kati,

Love the mini lap top! Never heard of Vivienne Tam Mini laptops..till I googled it.

but Kati, blame the RA...not yourself!  I think all of us have moments where we like to believe we can do it all.  (at least I do).  Sometimes I can "cross the line" as a "normal" person...and sometimes it catches up to me and bites me in the @$$.  Hope you've rested up and are feeling better!

Actually, anyone who can shop, walk and drive for 12 hours with a toilet training toddler in tow, (RA or not), deserves an award and admiration!

Take care,

Beverly

[[gentle hugs]] Honey, even us "creaky old broads" overdo it once in a while!

I would LOVE to have a mini laptop! I lugged my old HP with me to Portland last week and ended up being too cheap to pay the hotel the daily access fee, so I dragged that heavy-as-lead thing through the airports for nothing. Someone at the conference had the new mini HP and I'm afraid i drooled all over it.

Hope you're feeling better today!

Thank you guys so much!  And I do think you should check out the mini laptops.  I have learned that the ONLY way to deal with this disease is to MODIFY, MODIFY, MODIFY.  If that means, I have to modify the size of my laptop, then that is an easy change to make!

I have to say thouh, it is 3 days later, and I am still flaring.  I'm beginning to worry that this was more than a shopping trip gone too long.  What if the Remicade isn't working?  Has anyone had it stop working so fast?  Its only been about 6 months.  I'm talking I went from barely mobile to miraculously active again.  I feel like I'm sliding: I'm not as bad as I was pre-Remicade, but I'm noticing that I'm sliding back into a nap routine again, even if it is a shorter nap.  And instead of hitting my wall at 8, I started hitting it at 6 and now 4.  Any ideas about what could be happening?

Well, FWIW, spring and fall are traditionally tough times for us creakies. Something to do with the change of seasons. It's a bad time for viral infections too, with the temperatures going up and down. Seems half the kids at my son's school are sick with something this week.

Listen to your  body and rest. You could be "working" on warding off some kind of infection. Remember that many of our meds compromise our immune systems, so take care of yourself!

Awww! I know how you feel. Last week I had one of the worst flares I've had in years, and I'm just now getting over it. I forgot how bad it feels. It took a lot of nights of a lot of sleep to start to wean myself out of it!

Get some rest and hang in there!

Thanks so much guys.  I bet you are right.

You know, each time I flare, I say to myself, "Kati, don't panic.  The remicade is still working, just b/c the Orencia stopped, the Remicade is still good..."

And then the flare goes one day longer than the last, and I panic...and sure enough, the next day I'm back to normal.

So maybe panicking is part of the "get well process?"

But I think what helped actually is my hubby finally made me take some prednsione.  After a 3 day dose, I started feeling somewhat better.  I still hit my wall about 7, but hey - I'll take that if I can at least have a life during the day!

How are you guys faring?

- Kati

Kati,

Sorry to hear the flare is still causing you issues.  I am also having flares due to the weather and extra activities.  Remember stress plays a big part of it so worrying when you are flaring can cuase the flare to last longer. Another of those catch 22; chase your tail kind of things.  Sometimes the dose of prednisone does help to stop the flare in its tracks. 

My Rheumy is considering prescribing me some at the end of March if I haven't stopped with the flares. As he stated jump start them away....  what ever that means.

Good luck hope you feel better...

Tessa -

Thanks so much!

You know - I think I got too cocky today.  Today is my VERY last class for my Master's.  (We can't celebrate yet.  I still have to finish 200 hours of school counseling before they hand over my diploma, but I should be done w/ those in June.  Luckily, my husband is a principal, so he helps out w/ getting those internship hours set up for me.)  In any case, the classes are 10 hours each, back to back Saturdays and Sundays.  In the beginning of the program, I used to call my husband BAWLING just 3 hours into class, knowing I would never make it.  Then six months ago, I started having an easier time in class b/c of the Remicade, but still waning towards the end.

But today - whether it was due to stress or just Murphy's Law b/c I'm here at the end of school, I just flared beyond belief.  I can't put any weight at all on my knees, and its been almost a year since I've been like this.  My husband has had to lift me to the bathroom, and honestly I can't stop crying.  At first it was from pain, and now I think I'm just so sad b/c I want to live a normal life so badly, and every time I get a tast, it is ripped from me. 

You know - a well meaning in-law said something to me at my nephew's bday party last week. She has recently been diagnosed w/ a disease similar to RA, w/out the deformity aspect.  She is also in her sixties, however, and has therefore retired as well as raised two grown children.  I'm feel like I'm plumb in the beginning/middle of life (like all of you) and each time I get started, I'm knocked back a step.  In any case, she said to me, "Kati - don't let this disease take your life away."

I'm not sure how to feel about that.  On one hand, it HAS taken much away, the likelihood of having more children, financial stability, friends, etc...  On the other hand, I'm the girl who started a MA 3 years after my diagnosis, who takes care of an active 2 year old and sustains a wonderful marriage, who excercises 4 times a week and who reads voraciously.  Oh, and who babysits for ex-students who cannot always afford childcare. 

So in part, I was riled.  I felt, "How dare you?"

But I guess in part, I'm also very very scared, that RA will take my life...whether I let it or not.

I guess the good part though is that, while I had friends I could call, I knew NONE of them would understand the way you guys can.  This is where I came to let this all out.  I have been more honest w/ you guys then I ever imagined I could.  Thank you SO SO SO much for all of your support.

*Hugs*

Kati

P.S. Sorry for any typos.  Trying hard. 

[[gentle hugs for Kati]]

Try to think of it this way...RA changed the life you HAD, the life you EXPECTED to have. Notice I didn't say "took away". Changed. You're on a different life path now, and not necessarily a lesser one. Just a new one. Like any other life path, it will be what you make of it.

A good wife and mom, a voracious reader and a lover of learning? There are worse lives to have! Trust me, you are the envy of many, many people with healthy bodies and broken lives.

Hang in there!!

Carolan,

I'm sitting in class right now, and you got me teary-eyed. 

Thank you.  You have really given me a lot to think about!

[[hug]] Maybe that's what your mother in law was trying to find the words to say - don't let RA steal your joy. Don't let it send you down a tunnel of hopelessness.

Its not hoplessness, I feel...but don't you ever just feel defeated,temporarily?  You are always so positive.  I so envy that.

Oh - and it was my brother's M-I-L, but that's ok, I didn't specify. My fault.  The only reason I bring it up is b/c my M-I-L passed away years ago.  I think things would be easier if she were here...

But back to my questions... I find that we keep stumbling upon "treatments" that work for only so long, generally six months give or take, and just when I'm starting to plan my life again, the flares start back up.  Each time they seem worse too.  I called my doc today, and I said, "It is official, I have the STRONGEST case of RA known."

Of course, I was kidding.  I'm nowhere near, but we're both perplexed that I keep going through the meds. like this. I've now been on every biologic except Rituxan, which I'm not even sure I want to try b/c the results seem only so-so, and the side effects pretty severe.

But I think a big part of my problem is that I've never accepted that the flares will be my life b/c I do keep finding treatments, even if they are just temporarily.  I have TRIED so hard to come to the realization that this IS my life, but its still so frustrating.  Reading Seth's blogs help b/c he's been dealing with it for so much longer, and he still seems to get frustrated at the things that pop up.  I guess that is more my feeling, not hopelessness, but temporary frustration and even defeat.

Am I throwing too much at you?

Please note: This keyboard is SO much easier on my fingers, and that is why I can type so much, if not accurately.

You have GOT to get a mini!!!!

I know exactly what you mean about feeling defeated! Every time I get over one surgery only to have something else "pop", I think where will it end??  Last night I chipped a tooth on popcorn, just after having major dental work done a few weeks ago. GAH! (I think I've used that word before... )  I don't get the major flares anymore - knock on wood - but age and wear and tear are starting to catch up on me and it's discouraging.

I know I seem positive here on the board but trust me, there are times when I'm in the proverbial fetal position. Coming here and encouraging others is the best therapy for me. It helps me remind MYSELF that the words I type are true!

And I miss my mother in law, too!!

Kati,

First sorry I haven't been on in awhile to respond to this and hope it doesn't bring back up any bad memories from a few weeks ago.

Remember even those of us that have had this disease for 30+ years still have the same type of feelings of that RA has controlled us or is controlling us.  Only out of experience do we state: Do not let RA DEFINE YOU!! Carolan is right your brother's MIL just wasn't expressing it correctly. 

You are a good mother, wife and everything else. RA has just Changed the way you go through these experiences. This new path will make you a stronger person than you will ever know...it will give you the DRIVE and AMBITION that NORMAL people will wish you had. 

I just got back from Somers, NY with about 30 of my peer managers and I was the only one with a cane and braces etc.  When these folks would ask me why, what etc, I was honest and explained the differences between Arthritis (Regular) and RA.  Since this is the first time I have ever seen these folks Face to Face they have repeatedly said "Teri, How do you have a smile on  your face everyday knwoing that this disease is so painful and can cause you to be disabled"  my response is this is MY BODY and I will define it and will live it as long as possible before it gets worse than it is! Yes I have that scare of being in a wheel chair but life is too short to allow my MIND to give in to not being able too. I use The Spoon Theory on life I can only do so much in one day and I am the person who controls that and choose what I need and want to do.  I do not allow anyone else to make those choices for me. Yes sometimes children and grandchildren take my priority others I can't allow it and have to ask Hubby for help.   That is the key to successfully defining your path is asking for help when you need it. Expand your support network as much as possible."

Asking for help, yes it is one of the most difficult things to do, though  you have to from time to time.  I have printed off The Spoon Theory and insisted that every family member and every friend and new friend read it so they understand why and do not question why there are days I just don't get out of bed.  Like yesterday after a two day trip to Somers, I couldn't get out of bed and I stayed there until 7 PM at night.  I crawled to the bathroom and never tempted the stairs. I curled up with my Kindle and the remote control...and said Later world I will come see you when I am  up to it.  (Yes even us that have had this for many many years still have those days...we are just more used to handling them because it is like life a learning experience).

Okay I have gone on way to long...  Let me know if you need to talk about this one on one I will always find time to chat with you or any of my Creaky friends.

Tess

Tess,

I just saw this reply for some reason, and I didn't want it to go unnoticed b/c it was such a wonderful response!!! I will try to take in everything you are saying.  It is good advice. 

I think my frustration level with this disease has come down a lot since I started on this board, but I still have those bad moments.  Part of my big issue with this disease is that before R.A., my natural energy level was hyper; and much like a puppy or a baby, my energy came in waves.  I was either doing 12 different things or sleeping.  I'd go, go, go and crash.  With RA., its all about move and rest, move and rest, a balance...as you guys all know.  Too much moving, and I stiffen.  Too much resting and I'll stiffen.  Sometimes I'll go months and achieve that balance, but then inevitably, I forget the lesson, and return to my manic and crash days.  That's when I get out of whack and flare.  Does this make sense? 

I know If you knew me in person, I think it would make better sense...LOL.

IIn any case, I know that for me, even reading has been an activity that has had some of its enjoyment curbed b/c of this disease.  No longer can I wallow in bed for hours with a good book or I get stiff.  I have to take breaks from novels and walk.  It is so frustrating!!!  Does this happen to anyone else?

But coming here to express these frustrations, and receiving such positive feedback is so helpful.  I think how lucky I am to have met such great strangers willing to take time out of their days to help me come to grips w/ this disease.

And you do sound remarkable from your descriptions of yourself.  I can see why your co-workers would be impressed!!!

Previously TessaD wrote:

Kati,

First sorry I haven't been on in awhile to respond to this and hope it doesn't bring back up any bad memories from a few weeks ago.

Remember even those of us that have had this disease for 30+ years still have the same type of feelings of that RA has controlled us or is controlling us.  Only out of experience do we state: Do not let RA DEFINE YOU!! Carolan is right your brother's MIL just wasn't expressing it correctly. 

You are a good mother, wife and everything else. RA has just Changed the way you go through these experiences. This new path will make you a stronger person than you will ever know...it will give you the DRIVE and AMBITION that NORMAL people will wish you had. 

I just got back from Somers, NY with about 30 of my peer managers and I was the only one with a cane and braces etc.  When these folks would ask me why, what etc, I was honest and explained the differences between Arthritis (Regular) and RA.  Since this is the first time I have ever seen these folks Face to Face they have repeatedly said "Teri, How do you have a smile on  your face everyday knwoing that this disease is so painful and can cause you to be disabled"  my response is this is MY BODY and I will define it and will live it as long as possible before it gets worse than it is! Yes I have that scare of being in a wheel chair but life is too short to allow my MIND to give in to not being able too. I use The Spoon Theory on life I can only do so much in one day and I am the person who controls that and choose what I need and want to do.  I do not allow anyone else to make those choices for me. Yes sometimes children and grandchildren take my priority others I can't allow it and have to ask Hubby for help.   That is the key to successfully defining your path is asking for help when you need it. Expand your support network as much as possible."

Asking for help, yes it is one of the most difficult things to do, though  you have to from time to time.  I have printed off The Spoon Theory and insisted that every family member and every friend and new friend read it so they understand why and do not question why there are days I just don't get out of bed.  Like yesterday after a two day trip to Somers, I couldn't get out of bed and I stayed there until 7 PM at night.  I crawled to the bathroom and never tempted the stairs. I curled up with my Kindle and the remote control...and said Later world I will come see you when I am  up to it.  (Yes even us that have had this for many many years still have those days...we are just more used to handling them because it is like life a learning experience).

Okay I have gone on way to long...  Let me know if you need to talk about this one on one I will always find time to chat with you or any of my Creaky friends.

Tess