Monthly Archives: February 2010

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!

A Whole New World

Wow… what a year.  What a roller coaster ride…

Let me start by saying… Dell Children’s Hospital is the place to be if you have a kind with anything.  The only thing that I can find any fault with at all if the sofa bed isn’t designed to be slept in… there is a wooden bar that separates the left and right side that (when it is pulled out into a bed) digs into your back and ribs really badly.  OH… and the internet is incredibly slow.

The people are wonderful.  The library is really diverse.  The DVDs that you can borrow are even new releases.  The teen room on 4 isn’t huge, but it has a juke box, a foozeball table and a boomerang air hockey table.

The cafeteria isn’t massive, but the food is good and not horribly priced.  I will be taking my kid down for breakfast in a couple hours… they will give me a voucher for her so she can escape her room.  But the room service that they gave her to order from whenever she feels like it, whatever she feels like eating… you can’t complain.

Last night, at 10:00 she finally went down for her MRI.

The neurologist didn’t seem to think the EEG was going to show anything… at least that is the way he let on to me when we talked night before last.  Trouble was… it did.  Abnormal spiky and slow rhythms in the back right hemisphere.  Could just be the way she is wired.  Could be malformed blood vessels.  Could be a tumor.  Could be scar tissue.  We weren’t leaving the hospital until an MRI was done.  Yesterday was a busy day at the hospital… and the MRI was busy all day.  We spent another night in the hospital because we can’t leave until the MRI is read and interpreted by neurologist and we get a green light.

We started our anti seizure medicine last night, officially.  The loading dose apparently didn’t count… that was to just quiet whatever was going on with the back to back grand mals that she was having.

I’m stressing my mom…. 2000 miles away… because she can’t be here.

Me… I was up until after 11 last night and up at 4 this morning and up several times to check on her through the night.  I’m freezing.  My ankles and knuckles hurt.  Coffee is… icky, but it is keeping me going.  Yes, I’m eating… not because I feel like it but because everyone is making me eat.

Today, I have to call my Rheumy to change my appt for next week because she is going out of town.

By now, I should be getting a call from PCP on test results.

This morning… I totally regret being off the prednisone.

I was asked yesterday by most well meaning of relatives if I had contacted my support system.

I guess I answered her honestly… this is most of my support system… and you have been notified.

It is amazingly helpful to get messages back that I’ve struck a chord, or just a “hang in there”.  It helps so much…

epilepsy, a whole new world

It has been quite a day.  8 pm, sitting on the sofa bed in room 336 in Dell Children’s hospital… It has been a long day.

Sunday February 21, 2010 was a day that I will remember always.

We made it with the washer and dryer people delivering the new stuff and getting it set up.  We were getting ready to go to Best Buy to yell about the big scratch they put in the front of the dryer when Adam came looking for me.  He wanted to know if something was wrong with Amandya, or if she was just joking around with him.

She wasn’t joking.

When I got to her, she was on the floor, her eyes were rolled back in her head, eyes half open, arms stiff, face contorted, drooling.  She was flailing; jerky motions.  I was scared… really really scared.  When she started to come around to open eyes and focusing on me, I asked her if she knew who I was… Mommy… I asked her what grade she was in in school… she sounded like a 5 year old but told me she was in 8th grade.  Later, in the car on the way to the hospital, I asked her how old she was… again… in a 5 year old’s voice, she said she was 13… which was how old she was in 8th grade… 2 years ago.  She kept trying to take off her clothes.  I got her to the car… we got her to the ER… by the time we got there, she was starting to have some control over her limbs.  By the time she was in a bed, she knew what year it was and was starting to be coherent.  It was a long 10 minutes.

It is amazing what adrenaline will do…

We stayed long enough for her to pee.

They discharged her, and said, you need to follow up with Neurologist in the morning.

Out to the car… and starting home.

We made it about a mile… maybe a mile and a half.

I was trying to get her to talk to grandma on the phone.  She said… later…

I got the phone back and tried talking to my mom and Adam said… Oh crap (although a little more colorful… )

I turned around in the seat and she was standing up in the back seat of the car, rigid… her limbs stiff, face contored, drooling, eyes rolled back in her head, eyes half open.  We turned around at the red light… pretty quickly… and high tailed it back to the ER.  She was still seizing when we got her there.  We had to half carry her, half wheel chair her into the ER to keep from getting her legs caught under the wheel chair.

She got put back in the still dirty room where she was before.  They hadn’t even had time to change the bed linen.

She never did come completely around.  She threw up several times… even with the anti nausea medicine… she thew up the anti-convulsive meds… they ended up giving them to her in an IV.  After a chest x-ray and the IV started… we took a trip via ambulance to Dell Children’s Hospital (where we are now) and settled in.

The hospital is really nice.  The decorations… the staff… the rooms… it is a really nice hospital.

The couch is uncomfortable.

The view is pretty.

Dr Reardon came in and talked to us (me… she was still-again pretty out of it).  It looke like she probably only has epilepsy.  EEG today… and an MRI to rule out brain abnormalities and tumors.  But once it is controlled for 6 months she will be able to drive and will be able to have a normal life.

Monday AM.

Called mom and Gin.  Larry called (not sure if Hospital is in network or not… double the deductable… lord… At least she is in the best place she can be.  Phone is dead.  Went down to get breakfast.

Oatmeal, breakfast taco, milk and a muffin (Muffin for Adam).  Choking down the oatmeal.  Taco will be for later… 3 aleve… 1 bc pill… 1 singluar.  Coffee in the family break room.

February 22, 2010

No stress?  No… stress.

Ankles hurt.  Knuckles hurt.

Scared an 11.

See… I’m convincing myself it is a matter of perspective

Threw a shawl around my shoulders and threw open the office window.  The air smells so wonderful right now…. the breeze is cool, so the shawl feels great, and the breeze is kind of stiff, so “open” is only about 6 inches or I would have things blown all over the office… but hey… there you go.

There is a cold front blowing in… and with it comes the smell of spring (well… what passed for smell of spring back home… here, it smells like february…)

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) 

Green Tea and RA

Okay… I’ve been mostly a black tea kind of person.   I like what my DS calls Flowery tea, but that is herbal… or literally flower petals… not flavored green tea.  I’m thinking that I’m going to trade some of the black tea I’ve been drinking in on Green Tea (maybe occasionally jasmine green tea).

I’ve been reading that 2 – 4 cups a day might help with the inflammation… and it tastes good and even eases some of the crappy feelings that I’ve been feeling with the MTX.

maybe…

Prednisone Free Day

Okay… I KNOW this is going to be a mistake… but… I have to do it sometime again.

Last night was my ‘add another 2 to my MTX dosage night’ and man did I feel it this time.  Last night it made me dizzy.  Today I feel light headed and nauseous.  I’m hoping that is a good sign because it means it is working.  I’m not holding out a lot of hope… but hey.

Friday night the dryer broke… so we are dryerless for a bit.  It is a gray Saturday, so hanging clothes on my “I don’t have a clothesline hidden on the back porch” won’t work so well unless the wind picks up or the clouds blow out.

Thursday was my annual PCP physical… so in general this is a less than stellar week.  I have not heard back on my tests yet, and I didn’t really expect to, yet.  Is it a bad thing that I feel like a fatalist and figure something will be found this year in my tests?  Doctor did congratulate me on my half marathon finish (medal came Thursday, so that was a bright spot) and on my 5 pound weight loss since November.  Think it would have been a bad thing to rat myself out and tell her that I gained about 4 pounds gearing up for my race?

Naw… I will have (hopefully) some of that off by my next Rheumy appt on the 4th.

So, yesterday was my last day on 2.5 mg prednisone.  I took 5 though monday to get through the race without killing anyone… and down to half all week.  I want to see what I can accomplish now without any.  I hope that I’m not being optimistic that the MTX is working and it is really the predisone hiding stuff… but I have a feeling I’m going to be disappointed…

For now… I have computer maintenance to do… clean up one desktop so we can get it working better… make backups of some more files than I had actually planned, but it is better to have too many backups than not enough.

maybe take a trip to the laundromat (washateria?) to dry clothes for the school week.

Hang Ups

Okay… just giving you fair warning.  This is a rant… one of my pet peeves…  get out if you don’t want to watch.

What is it with people and gender hang ups?  I mean really?

This morning I was skimming through emails and I came across a post to a list by a guy who has a chronic illness and he was asking about prayer shawls.  Is it okay for a guy to get one… shawl sounds girly…

I’m coming to terms with this beast that is now a part of my life… part of what defines me… and you know what… I don’t care if something is called a knitted nut sack… if it will fit a need… if it will make my life in any way better… i will have it.  I will use it… I will wear it… I don’t care.

I have never been one for stereotypes.  Never in my whole life been one to follow the gender appropriate track.  Was the first female FFA president in our town.  I can weld well.  I can change a tire and I can change an oil filter (at least on an older model car… haven’t tried lately).  I’ve been in Information Technology for 16 years.

My kids get this look of utter fear when we are at McDonalds and the person behind the register asks someone if they want a girl toy or a boy toy.  They are smart enough to know that that is one question that is likely to set me off.  They have both been told from day one… there are no girl toys, there are no boy toys.  There are toys.

DS has a stuffed animal collection, plays the violin very well, reads everything he can get his hands on and writes poetry.  He had trucks and dolls when he was little little.  He has to deal with the fact that other parents aren’t quite like me… that other kids figure you have to fit a mold and if you don’t there is something wrong with you.  He gets harassed a lot becuase he doesn’t and only he seems to know how to deal with it.

DD is in ROTC and runs track, competes in flexed arm hang and is working on her rifle skills.  She plays soccer, has roller blades and hockey skates.  She owns exactly 2 dresses… gowns for the military ball because she doesn’t want to wear her uniform and that is her ONLY other choice.  Day to day, it is jeans and t-shirts or sweats and always the black converse high tops.  She’s mine.

Now… back to the rant.

If you are dealing with a chronic disease (heck… no matter what you are dealing with… a cold, a hangnail, or just a crappy day at work…) you have enough real stuff to deal with without having to worry about what other people think.  Do whatever it is that makes life easier… do what comforts you… do whatever… It doesn’t matter WHAT other people think… if THEY don’t like it it is their problem not yours.  If YOU don’t like the word connected with the comfort, change the word.  Heck, I would wear something called a nut sack if it helped me do something or feel better or get me through a rough spot.

Life is too short to worry about other people’s crap.  We have enough crap of our own…

there

rant over…

18 February, 2010 12:43

To all of the doctors office receptionists… if you cant go 45 seconds without blowing your nose or sniffing snot or coughing up a lung… don’t touch my insurance card.  Don’t touch the pen that I have to sign in with.

I have an auto-immune disease…

The least you can do is to have the COMMON COURTESY of washing your hands with that GIANT ECONOMY size alcohol gel bottle’s contents that is sitting two feet from you… even ONCE in the hour that I’m sitting in your waiting room