Category Archives: flair

RA Reminds us that it’s there

I’m sitting looking out over the snow in my yard.  There is a woodpecker munching on my suet feeder.  There are chickadees and titmouses (titmice?) grabbing some of the sunflower seeds from the clear plastic feeder that is stuck to my window.  The squirrels are, apparently, huddled in their nests somewhere because they really haven’t been making much of an appearance this morning, yet.  It’s really a pretty morning.

I’ve been fighting hard to get completely over the flu from December when… WHAM… Bronchitis from January derails any hope of my January infusion being on time, if happening at all.  The antibiotics aren’t really helping an awful lot.  My infusion is a week late now… my MTX has been put off for at least last week and this week and probably next week.

This morning, the stress of 70 hour weeks and forgetting to go pee, let alone eat and putting sleep off in the interest of “Git ‘er done” has all contributed, this morning, to my fingers and wrists screaming about whatever has been going on in my body.

Stress is really kicking my behind.

I try not to.  Honestly I do.  I try meditation.  I try not bath.  I try walking.  I  put bird feed into the big giant bird feeder out front, and I kind of melted down in the kitchen on the floor because I could not make my hands get the roof back on the bird feeder.

Stress is RA’s evil insidious little friend… and just when you think it’s safe to take a breath, something happens and your body rebels.  Stopping the drugs that make your immune system dumbed down so your body can heal from the sick just pisses off the rest of the immune system and WHAM… it comes screaming back to remind you that it is SO there.

Prednisone… I’m turning to you again… not a huge dose, but one that I really really didn’t want to have to start taking.

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Santa Hustle… Cedar Point… T – 26 hours and counting

Okay… so today we drive up to packet pick-up.  I’m hoping for long socks and arm warmers; I’m REALLY hoping for arm warmers (they are really neat).  They have a store, go figure.

Last night I finally tried on the pants I’m wearing to race.  They fit perfectly.  I’m going to hunt up my tights for under them because 40 isn’t warm and they aren’t probably heavy enough for me to be overly happy even racing.  But they fit and they are cute.  I get my dry fit stuff in my packet today, so I will see what other cute crap I can wear with them.

My fanny pack is almost packed.  I have to toss in my iPod and my phone and my camera and I’m good.  I have my glovies (electronic compatible ones, naturally) and hand warmers and my own candy canes.  Not that I’m terrified of having to face the same lessons that I learned at Run For The Water last year, but… yeah.  I pray I don’t have to worry about watching them empty the last two water stations all over the ground as I approach.  I hope I get a cookie or two.  I hope I get a candy cane… or two.  I hope I’m not swept.  Even DFL beats DNF.  I really really want to finish.

I’m mortified to announce that I actually did start taking my prednisone.  Yesterday I took 3 because for two days my left wrist (NOT my problem child) was KILLING me.  Right around the Carpal Tunnel place it burned and ached and was horrible.  My middle three fingers started to stiffen and ache and I knew it was going to get very not pretty very fast.  I hate taking them.  I refuse to take them if I have any other options.  With the race tomorrow and so much I still have to get done to get ready for Christmas and my project kicking back into high gear… I probably didn’t think as long as I might have done otherwise.  But… my Rheumy did give me a script back in the spring when my finger (same hand oddly enough) went totally bat shit crazy on me and gave me a refill.  I kept it because I’m scared and it’s a good thing to have on hand.  So… I am treating myself and will catch up with my rheumy on Wednesday.

So here I am, up and at em, ready to go to packet pickup.  I’m HOPING to spend a few minutes along the lake today taking pictures and enjoying the cold.  Eh a girl can dream, can’t she?

Backsliding

So, Sunday I finished the half marathon again.  It wasn’t easy.  It hurt.  And my time was way off.  And I realized since then that there is a good reason for that.

I am now just as bad as I was the day I was diagnosed (maybe a little worse).

All of my toes, my ankles and one knee are involved.  The Rheumy said that she would buy into the fact that it was post half marathon swelly squishiness but I only ran on my feet, and my fingers (all joints) and wrists and elbows and shoulders all seem to be involved now, too… and I didn’t run on my hands.

She was going to keep me on what I was on before and add in Plaquinil… but that will really only help if you have a couple of joints that are being difficult, not if you have back-slid to way where you were before.

So, I’m going to be starting (if the insurance approves it) infusions of Orencia in the next couple weeks.  IV drips for 30 minutes every 2 weeks for a month or so then once a month.

I knew my hands have been hurting a lot.  I’ve been toughing it out a lot.  Using a lot of Tiger Balm (like it is hand cream) and taking a few more Aleve than is probably prudent.  I guess there is a good reason.  There is a good chance that my hysterectomy changed my body chemistry enough that the Humir a just gave up and now I have to work through whatever it is that is pissing my body off.

The adventure continues.

I did finish though and I did get the bling.  I’m scared I will never get to do Disney now… and I have to do Disney at least once.

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Long Week

So… here we are again fair reader… (yeah yeah… it is a weird morning… give me a break)… It has been a long week… and my body is reminding me that it has been a long week. This week… Adam … Continue reading

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What RA is like

This was posted in a group I’m on on facebook.  I went hunting and found it here as well (and found out that it can be shared with attribution)   What RA Is Like: A Letter For Family and Friends … Continue reading

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Out Of The Shadows and In Your Face…

Okay… let me start out by saying I didn’t realize just what a raw nerve this was with me until I read the response to this…and I will warn you this is a rant… This all can be found here… … Continue reading

Rough Day… Rough Wait

Yesterday I worked 14 hours.  By the time I got home I was exhausted and aching.  My shoulder was sore.  When I got up this morning my shoulder was hurting about a 12.  I MAKE myself use my arm to try to get the synnovial fluid worked out of it.  I’m trying to make myself feel less horrible.  It isn’t working.

I hurt so bad today I actually called my rheumy to see what I can do… I took the anti-inflamitories that she gave me this morning (max dose) and it did NOTHING… So I called… and I talked to the nurse three times.  The last time…

There is a steroid pack at the pharmacy… that I can pick up after it hurts like this for SEVENTY TWO hours.  I had to put in 9 hours today… I have to haul my butt into work tomorrow because we have a very expensive contractor there and it is critical that I be there.  My back up… yeah… he can come in 5 hours later than the rest of us yesterday… he can leave early today… because he is tired and his back (surgery 7 months ago) hurts so much that he has to be home.  and I “got” to come home so I didn’t have to stay at work 14 hours again tonight… I have to WORK as long (oh… and I “got” to be volunteered to have my trouble ticket made a severity 1 and worked 24 x 7  because obviously I am the ONLY FREAKING ONE who can DO it and I so totally don’t need rest.

I am cranky tonight and feeling like not only am I taken for granted… I am ignored when I talk.

Between the pain that makes me near tears all day and the “you really don’t matter as much as… well… anyone else” attitude… I so want to just lay down and curl up with my blanket and sleep… which I can’t do.

The single bright spot in my today?

There is someone at work who rode to my defense today… made sure that boss man heard him say that what I do is appreciated… most particularly when I do it without bitching when I am not the one on call to jump when something is needed… but do it because I am there and I will get the job done.  That made me smile through the pain fog.

I am so hoping to get a little sleep tonight…

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A week of reality checks

It’s been an interesting week.   I had good news on Monday… my thyroid test was normal.  Guess that shoots that whole deal on blaming my not being able to loose weight on THAT… ah well… was worth a shot. … Continue reading

Achey Breaky Tuesday

Okay, I have started to not like this game, at all… Man… got up this morning and hurt… everywhere.

Yesterday, I probably should have seen it coming, but I’m still not always remembering that I have RA and sometimes RA hurts when you don’t expect it to and that sometimes it hurts when you should expect it to and that I can sometimes affect when it hurts.

I should have realized and taken steps to try to counteract it ahead of time.

I didn’t.

Yesterday was a forgetful day for my kid.  I don’t know if it is the epilepsy or the meds to treat the epilepsy but she totally zoned out yesterday.  She went from telling me to remind her that she needed to go to tutorials after school to two min later not knowing why she had to go, not knowing she missed a test, not knowing she was failing because she missed the test…. not knowing who the teacher was she missed the test for… not knowing we had a dog…

If it wasn’t her (she just isn’t “with it” enough for long enough to come up with this on her own for 3o min so I don’t think it was her playing and it seems to follow a pattern) then it is something and we need to find the something.

She got caught in a lie… and this lie is a big one for the current situation… and she knows it.

DH was screaming at her.  She was screaming back.  I was trying desperately to get my albuteral out of its box so I could actually breathe.  She thinks everyone except her friends (FRIENDS?  really?  don’t get me started right now) suck totally and she wants to move in with them because we are mean and don’t let her have a life and don’t let her do whatever she wants and we put a roof over her head and provide food she refuses to eat most of the time and provide her with an IPod and a cell phone plan that lets her talk all the time to everyone and surf the net when she wants and go out and put the extra hundred or so dollars to the money she has for clothes to buy her the extra couple pair of jeans just because she wants new jeans… but we are unreasonable because we want her to turn in her homework so she won’t get -0- and fail and we want her to not lie all the time and we expect her to let us know where she is so if she has a seizure we know where to find her…

We are horrible parents.

She thinks “Shadow” has the right idea and that maybe emancipation would be a GREAT thing (at 15… she can’t carry the bowl of peanut butter down the steps when she comes down stairs so we don’t get ants in her room or mice but she is going to go out and get a job and an apartment and handle her own medical situation when OH Hey she can’t drive because of the epilepsy is so new).

So… long rant finally getting to the point.  With all of the drama and the fact that I went down to the park and cried and threw rocks at the creek and cussed under my breath in the rain… this morning I hurt.  My knuckles hurt.  My wrist hurts.  My ankles and toes hurt and my chest hurts… kind of inside breathing kind of hurts.

So, back on the aleve and maybe I will have to cave in and take a prednisone just because I have to drag her butt to the doctor today…

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Flaring

Wow… there is something to be said for not starting to feel better… If you stay hurting and feeling like crap for the most part… you don’t notice so much when you have a day when you feel way worse. … Continue reading