Category Archives: Journalling

Wonderful Day of Contemplation

This morning,  I decided to make soup for dinner (which is an all day thing) and brownies from scratch.  Turned out the soup was better than the brownies… oh well… won’t use that recipe again.

The soup required going to the store for potatoes, cabbage and carrots (as well as bagles, cream cheese, jelly, popcorn and a nice cold drink)… It turns into a 3 mile walk which was wonderful because I got to watch my daughter come back into herself.  She got a little dizzy a couple times, but cutting her Keppra dosage in half to work her way up seems to have had a good affect.  This is the happiest I think she has been in months!  I am wondering how long weirdness has been going on in her brain that we have been attributing to teenage attitude.  I KNOW the attitude will be back… but hey… today was precious.

I have another ingrown toenail which is infected… making it hurt and making my ankles hurt and squishy… but I really needed the walk (even though it meant carrying my laptop on my back in my backpack because it is my pager week).

I was soaking in a nice hot bath when we got home and I realized that a year ago… actually about a year and a half ago… I was at Ren Fest (go TRF) and I was in a great little crystal shop… lots and lots of quartz crystals.  There was one that was three crystals all stuck parallel to each other.  The shop owner wrapped them in silver wire and made a pendant out of them.  She called them the three ladies and she was hoping to find them a healing home where they could help three women.  At the time, I thought of mom, me and Amandya… but I didn’t know why other than mom is a breast cancer survivor (go mom!)…

It was an obscene amount of money for  a chunk of rock that lays around on the ground just about everywhere… but it talked to me… so I bought it and I’ve worn it a few times… it makes my heart smile.

NOW I know why I needed to buy that rock…

Mom is a breast cancer survivor.
I have RA.
Amandya has epilepsy.

I don’t know that it has any actual healing properties… but it brings peace to my soul and that is healing in itself.  I strung it on a chain that came from a dog tag machine and slid it over my head…

Everything happens for a reason.

I keep trying to remember that… my RA is for a reason.  If the only reason is to MAKE me slow down and take stock of myself… at least it has done that.

I wonder what purpose Amandya’s epilepsy has… I know that it has slowed me down even more… and it has caused me to reach out to try to help others with the same or similar problems (and to make friends with the mother of one of Amandya’s friends who is way sicker than both of us put together…  15 with RA, Lupus, blood clots in her brain… she has been in children’s hospital for FIVE weeks…

Every day is another day.  Every day I reach out and try to find the rainbow.  Somedays it is harder than others.  Today, it was a better day than I expected.

It’s Saturday again already?

Wow… the end of one of the longest weeks I can ever remember.  It has been an adventure, and the beginning of an adventure… (and out of frustration and anger… another blog… this one, not surprisingly, on our epilepsy journey… it is new, and sparse right now, but I know what I need to do with it since there are very few blogs that I’ve been able to find on epilepsy like so many wonderful people have on RA…  ).

Last night was week 2 on 8 pills of MTX.  My knuckle bump seems to be staying down even after almost 2 weeks off of prednisone… so maybe maybe maybe it really is the MTX helping… it is apparently having an affect on my hair… my PCP asked me if that was what I was attributing the hair loss to.

thanks… I needed that… like I needed the rest of my week.. eesh…

I did get my lab results back from PCP… cholesterol is still a little high… don’t know how hight but a little high… so I need to watch my diet better.  I wonder if the cholesterol is because (partly) of the diet I ate in preparation and recovery from the race…   It is pager week… so I won’t be doing much in the way of distance work this week (at least not until Friday) but I need to get back to the gym starting Tuesday.

I signed up for a yoga class that the HR department at work is offering for $25… 12 weekly classes on Thursdays… I’m hoping that helps with my focus and stress level.  Oddly, with all of the stretching I do when I run, my flexibility isn’t so bad… but this should help with that, as well.

Today is a learning and catching up kind of day.  Supper is beef/pork soup day.  A quick trip to the store will grab cabbage, potatoes and carrots to toss in with the other veggies and some barley… maybe a loaf of Italian bread (also known by the kids as “good bread”) will round out dinner.  Maybe a batch or two of home made brownies too… yeah, I’m in THAT kind of mood.  add to that doing research and catching up on reading everyone’s blogs to see where they are and that will make today a wrap.

Now… a cup of coffee… a hot bath… clean clothes and we are off…

Have a magical day!

Coffee and Contemplation

I’m feeling sorry for myself this morning.  I’m 99.9% sure the “better” I was feeling was attributed greatly to the prednisone.

this morning my ankles ache (not my toes… oddly enough… for which I am immensely grateful) 

Okay, the Pity Party is OVER

Sunday was a half an half kind of day… the walk did me good, which it always does… and the meatloaf went over wonderfully.  It had been years since I had made meatloaf and the LAST time the dog ate it for days.  This time, she got a few of the crumbs (different dog) but it all got eaten and it was a big hit.  I was impressed.  I have already had requests to make another one… which I will probably do before too awfully long.

Monday was a HORRIBLE day.  It was rainy, but that just meant it was gray and wet and that usually is a reason, here, to celebrate, even if it kicks the ouchies up a notch.  Work meant that I “got” to play catch up with all of the things that other people were TOO busy to do (like over communicate to the users that they might have issues  after the maintenance that they did… if you have problems… blah blah blah… so who do they turn to?  the stupid one who they know will drop everything and help them with their problems… can you PLEASE adjust the KICK ME sign so it is at least straight on my back?).  While stuff was running I looked at my two hands laying on the table… big mistake.  That kicked in a massive pity party.

My right hand has lumps and bumps and swollen places that my left hand doesn’t have.  I don’t know if, because the overall swelling has gone down (I”m now convinced that this is likely due to prednisone rather than MTX… but I hope I’m wrong) that I notice it more, or if I’m just noticing it. Whatever the reason, it brought on a bout of depression that feels a lot to me like a HUGE pity party and I really don’t like it.

For about two days it was all I could do to not cry and half the time I spent crying and snapping at everyone.

Today, I’m feeling a little better… and I’m trying really hard to kick the blues out.

DD has her QUACKING neurologist appointment today (he quacked when DS went… I keep hoping that he doesn’t quack with her… but we have a long track record with quacking…. so I don’t have a lot of faith).  This means going in to work a bit late.

Half Marathon is in 3 days.  I’m getting psyched.  It is going to be breezy but the sleet, slimy weather should have blown out by then.

I have one question <WARNING WARNING… female question!!!> for anyone who has been on MTX and noticed… did it change your periods?  Mine, which were like heaven sent ones… 2 days tops, light and barely noticeable before… are not an entire week and heavy flow and annoying.  This is one side affect that I could TOTALLY do without… eesh.

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I must be crazy

Okay… so, reality is starting to set in.  In two weeks, I go participate in my first half marathon… I must be crazy to think I can do this.  As I sit on the bed wrapped in my heavy  fuzzy … Continue reading

It’s a Rainbow day…

Okay, well, maybe  not entirely.  Fact is, it is 76 degrees outside today and a beautiful sunny day (I’m pretty sure that winter might be over here)… and I even went for a walk at lunch time to the capital building and watched the squirrels play in the live-oak trees in the sunshine…

The rainbow part dawned on me as I laid out my pills for the day this morning…

Blue and white and beige and tan and yellow and cream and orange… all in a little pile… all very colorful…

Makes me think… it is all in how I look at this… RA has added colors to my day… and it helps me notice parts of my body that I would ordinarily overlook… like the spot on the outside of my right heel and the inside of my left heel that are about the size of a half dollar that are poking at me to try to get me to slow my life down…

RA is teaching me to slow down and pay attention to ALL of the colors in life…

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Contemplation on a foggy day

Rainy day… foggy day… lazy feeling kind of gray day Not so bad, though.  Aleve took the edge off and even the bump on my knuckle seems to be going down just a bit.  Maybe the MTX is actually already … Continue reading

pushing even when i dont feel like it

Today wasone of those days when i dont feel like pushing through the gym. but i have this race to ready myself for… and it makes the afternoon more tolerable… so i push. it makes me tired but clears the cobwebs and the mtx fuzzies… so i know i need to keep it up.

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Working out in the EARLY morning

I’m BACK (kind of).  4:30 this morning I hit the road for an hour’s ‘walk/run’.  3.5 miles later… sweaty and feeling human again… I hit the front porch… 35 degrees Fahrenheit in a t-shirt and hoody… sweats… and my DS … Continue reading

What do you do you do when a song gets stuck in your head?

Okay… it had a LIITTLE hep (thanks to … http://www.rheumamisfits.com/forums/index.php?) but it is stuck none the less…

We’re a couple of misfits
We’re a couple of misfits
What’s the matter with misfits
That’s where we fit in!

We’re not daffy and dilly
Don’t go ’round willy nilly
Seems to us kinda silly
That we don’t fit in.

We may be different from the rest
Who decides the test
Of what is really best?

We’re a couple of misfits
We’re a couple of misfits
What’s the matter with misfits
That’s where we fit in!

–(this part sung by Rudolph)–
Why am I such a misfit?
I am not just a nit wit!
I’m an adorable reindeer
Why don’t I fit in?

–(this part sung by Hermey)–
Why am I such a misfit?
I am not just a nit wit!
They can’t fire me.
I QUIT!

We may be different from the rest
Who decides the test
Of what is really best?

We’re a couple of misfits
We’re a couple of misfits
What’s the matter with misfits
That’s where we fit in!

http://www.misfittoys.net/rudolphsongs.htm

I’ve always loved “Rudolph, The-Nosed Reindeer” and I’ve always been able to relate to Rudolph and Hermey… but now I can relate in all new ways.

Why am I such a misfit?
I am not just a dumb twit
I can’t help it my joints ache
Why don’t I fit in…

Yeah, I can relate… and you know… it totally isn’t a bad thing

How about it?  Are you with me?