Friday, April 22, 2005

I am addicted!

I am addicted.  I have found my bliss.

It is this time of night that is my drug!  I just love to hear the silence.  Okay, there is an occasional snore, but mostly just silence.  Children all tucked safely in bed, hubby sleeping wherever he dropped.

This is my favorite time for me!  I just made a pot of coffee and did my nails!  YAY!  We leave tomorrow for vacation and I am feeling good.  Packing is all done.  Just last minute details remain and they are few.

Limo comes at 3am, I will revel in silence until about 2am, when I must begin to rouse the family to get them ready.

Be well, my dear friends, until we meet again, and I hope you find your bliss.  Maybe it too lies in silence!

:-D  Dawn

Monday, April 18, 2005

The World is Inherently Good!


I believe that people, and the world, more generally, is inherently good.  In spite of the evil, beset one human on another that we see each and every day in the paper and on the tv news, I believe those things to be in the minority of the human condition.  I believe that the stories of good and kindness are not told, and that is a shame.

I believe many more people held open the door for someone today, helped an elderly person load their car with groceries, gave someone the pennies from their wallet to pay the change needed on their bill, weeded a neighbor's garden that is too busy with her many kids, listened and gave hugs to those with heavy hearts.

I believe that there are more heroes than villains, those brave souls who are out there protecting and serving for the sanctity of life, rather than disregarding it.  Everyday heroes who get up and spread some sunshine within their own small world, in spite of their pain and challenges.  If only those stories were told more in the news, instead of just on the "slow" day as filler.

I believe that there are more people using the power of prayer rather than abusing the power of money.  More are giving of themselves, their time and their wallets to help their fellow man, woman, and child, than those who would steal from the same.

I believe that there are more tolerant, open-minded people who accept those who are different with open armed respect, than there are those who turn their backs in judgement.  There are many more who celebrate the rainbow of our world's colors than those who cling to a singleness of blind intent to be separate.

I believe that there are more smiles than frowns today all over our world.

I have to believe in this good.  It may not be celebrated by our newspapers and newscasts, but it is there.  It is how I can get up and face the day, in spite of my personal challenges, and how I can groom my children to become part of this human race, part of this ever shrinking world. 

It is hope. 

If you read this and think I am naive, then I am glad I live in my world and not yours. 


Sunday, April 17, 2005

Good Book

I have a wonderful book to recommend for all of us out there suffering with chronic illness.  It is called Blindsided by Richard Cohen.  He is a writer and former tv producer who has been dealing with MS and its awful effects for the last 30 years.  He is also married to Meredith Viera of The View. 

The book was shockingly honest and raw in its truth.  He is completely open about his disease and its effects on his life, his ego, and his relationships.  I identified with it greatly in certain parts and had to put it down due to the tears.  It is a great, easy read and I really think all of us in the shitty boat of the auto-immune cruise-line would benefit from it.

My weekend was good.  My jaw is finally back to normal and I am feeling good as I always do just after my Remicade infusion!  Yay!

The sun shined and the weather was warm.  My ds8 had is first scout sleep-over at an environmental center in their bunk house.  He had a wonderful time although, he is quite exhausted!  I dread waking him for school tomorrow am.  Maybe God will smile on me and a car back-firing at around 7am will do the job instead of me!  LOL  Hubby didn't sleep much either as all the dad's played poker and acted as if they were in college again for the night.  (duh, men @@)

6 more days until our vacation - a Carribean cruise!  Wooohoooo!  It can't come soon enough!  I start the packing tomorrow, I am pretty organized already, it should go easy!

More later... Dawn

Thursday, April 14, 2005

Baseball Yay! Health Nay...

DS10 baseball game was wonderful!  He had a single and an RBI, ( batted in a run), and his next up he got hit by a pitch.  He wasn't hurt, thank goodness, but he and his team scored a bunch that inning and they won 8-0.  YAY!

On to me...things are still painful with my jaw, although not as much.  I can eat now, but it is just generally a bit sore on the left side.  I could really do without this added nuisance.

I had my Remicade infusion yesterday.  It wipes me out for about 24-36 hours after, which is normal. 

I had the infusion director who is very thorough and went over everything going on with me of late and kind of confirmed a fear of mine.  I have been having this pain in my right leg muscles.  First the lower calf, then the hamstring and quads.  The pain is not constant, but the pain itself is always the same.  I have also had some of the same pain in my biceps accompanied by weakness.  I was thinking myositis, but didn't want to think it, and Linda, the RN and director, said the same.  She wants me checked by my rheumy before my next infusion.  Probably, they will confirm myositis, linked to the RA she believes, and may add steriods, which I have been trying avoid.  I don't know what to think or feel about that.

She also is concerned that it could be a sign that my lupus is becoming active again.  UGH.  I guess what will be, will be.  I am under good care.  I still want to try and avoid the steroids, but I want to be able to use my arms without worrying about dropping stuff.

Pray for me, I will be praying for you...



Tuesday, April 12, 2005

OUCH! My Jaw!

I haven't written because yesterday I had my tooth repaired and a cleaning.  I didn't eat before the appt, I had to premedicate and last time it made me have to "go" to the bathroom quickly, so I figured, I'll eat later!   

BIG mistake.  My jaw was so sore from being open for all that time I could not chew.  Finally, at 8:30 pm, about 26 hours after my last food, I had some eggs and french fries that hubby ran and got me take out from the local diner.  It hurt to eat even that but I forced myself - I was starving!  

My jaw was still hurting, and it took 2 vicodin, one at 10pm and another at 3am to get me through the night.  

I am exhausted.  After I get the kids to school, I am going to lay back down, but I have lunch today at dd8's school - so not for long, since I need to shower and get myself presentable for that!   

Made it to Hope's school for lunch.  I was only able to eat french fries as my jaw is still hurting too much. :/  I hope I can eat hot dogs for dinner!   

Baseball game #2 tonite!  YAY!   More later!  Dawn

Saturday, April 9, 2005

Baseball's Opening Day!

What a glorious day!  Not a cloud in the sky! 

Today was ds10's opening day for baseball.  Parade in the am, game at 3pm.  They started out great.  My son doubled on his first at bat, flied out for two others.  1 for 3 ain't bad!  The pop flies he really hit hard, when he straightens those out - look out!

  They lost though, 12-5.  Bummer.  He also pitched and did great, unfortunately, the fielding by other team members was lacking.  He also did some amazing footwork to cover 2nd base while playing short stop and got a difficult out on a fast runner.  He was really happy.  I think they all had the jitters a bit and the next games should really see it all come together!!  

The Coach (my dear hubby) is exhausted and fell asleep on the couch at 10pm.  LOL  Kids were also exhausted from their big day and running around up at the park.  There is a fair for opening day with all kinds of free food and stuff, so it is nice.  Of course, I drank too much caffeine at dinner, and now I am awake and everyone else is snoring!  Even Libby & the cats!  

Thank you everyone who has been reading and leaving me comments!! It makes me feel so good!   

This is such a crazy busy weekend and I haven't been able to get over to the Lupus Board at all, so I apologize to my Lupies...I will get there soon.  

Be well - Dawn

Friday, April 8, 2005

Medic-Alert Bracelet

I received the Medic-Alert bracelet that I begged my hubby to get me today.  I wanted it.  I picked it out - all pretty 10K gold.  I placed the order and decided what to put on it(couldn' fit all the meds - would need a 2x2 shield for all that).  I should be happy, thrilled, right?

So, why am I now feeling weird?  I guess because when I was a kid only really old, sick people had these, that's why.

I feel like I now wear the cattle brand of "illness" officially.

That is stupid.  I wanted this in case something ever happened and I was alone or unable to let them know that I am immuno-suppressed and on Remicade, Methotrexate and steroids. 

But, still I feel kind of weird.

I guess it will pass.  

Be well - Dawn


Thursday, April 7, 2005

What's it like to have Unlimited Spoons?

Okay, you all know the "spoons" story.  If not, here is the link. Spoons

A quick definition before I continue...

"well" = no chronic illness, ie; lupus, RA, etc.

So, I wonder, what must it be like to be "well" and to never have to worry about spoons - to have a virtually, unlimited supply?

Because here is the thing...I have suffered for the last 2 days just for cleaning our playroom!  Now, I know I asked for it.  I knew what was going to happen going into the whole thing.  Yesterday, I could barely move, slept on and off all day, and when I was awake, I was cranky and sore.

Today is better.  Not perfect but better.  In the days before Remicade, I would still be sleeping all day and probably would pay for it for a week, so believe me, I am grateful for small favors.

All you people out there who are "well" and read this rant, stop for a second and thank God for how blessed and lucky you are to not be chronically ill and in pain.  Every moment of my day is touched by my illness.  And I know, you cannot even fathom that.  So, again, thank your lucky stars.

That is not to say that I am not blessed.  I am.  I have 3 marvelous children that I have the honor of raising.  I have a hubby who loves me and tries his best to be everything I need.  I have 2 healthy parents that I have the privilege of living with in a mother/daughter style house that I see everyday, and help me in innumerable ways.  I have 3 pets that give me such joy.  I have wonderful friends, and a fabulous online community that truly keep me sane.

I am lucky, I am blessed.  I just don't have enough damn Spoons!!!

Peace, love and hugs, Dawn


Tuesday, April 5, 2005

Why not hurt some more?

So, I am still in pain, barely slept 4 hours, my neck is a mess. 

I had an eye doctor appointment.  My astigmatism actually improved a little, otherwise, nothing of note.  All is good.  The doc, a sweet 70ish gentlemen, said "I declare you perfect!"  I told him "Great!  I can't wait to tell my hubby you said that!"  He laughed, and said "Uh oh...just the eyes...I can't attest to the rest!"  He such a sweetie, so good with the kids too when they go.

After I came home, the brainstorm hit me! :)  Since I am sore anyhow, why not tackle the spring cleaning and reorganization of the kids playroom??? 

I tackled.  One huge garbage bag full of garbage.  One huge garbage bag full of toys for charity.  It tackled me back a bit, my hips, lower back and knees are screaming.  My hands are their usual sore, but not too bad.

Took a half a vicodin...seems to helping. 

Dentist update...yesterday, we had all three kids at the dentist for a cleaning.  She would not do my filling/repair at this time.  Hubby decided to work them over for this coming Monday which is supposed to be his and my cleaning and the receptionist caved!  She spoke to the dentist and convinced her to squeeze my repair in right after my cleaning!  I am so relieved that I do not have to drive. 

Hubby is all proud of - can't live with them, can't shoot em' and mount their heads either.

Be well,  Dawn

Sunday, April 3, 2005

  Sorry I have been quiet, I have been having a busy, busy week!  Friday, my aunt from Indiana was visiting us for the day.  She has to assign days to get to everyone!    My mom stayed home from work and we three, plus ds12 went out to a late breakfast.  Then we spent the entire day chatting and everyone, my dad, hubby, ds10 & dd8, joined in to go out to dinner.  Then we came back to the house and chatted some more before she had to leave!  It was a wonderful visit.  This aunt of mine has become such a great friend over the years, I miss her!!   Saturday.  The swimming birthday party for ds10 & dd8 that had been rescheduled.  Now, we were staying overnight at the hotel, so you know what that meant for me to do all am. After the packing and running out to get beach balls and other water we went!  We checked into the hotel at 1pm and waited for my cousin and her hubby and 2 kids, helped them get checked in, then waited for my best friend/sister and her baby and got them checked in.  We we all on the same floor a few doors from each other.    Time for the pool!  The kids had a wonderful time!  Only 2 no-shows.  Not bad!  They swam and played for an hour and a half, we parents yakked.  I asked for one parent to stay (at least) per kid, because there is no lifeguard and I didn't want to be responsible - just in case.  The banquet room was right next to the pool and it had unlimited sodas and chips & pretzels for everyone.  At 4pm we had chicken fingers, fries and pizza.  Then ice cream for dessert.  It was a lot of fun.  Many parents told me it was one of the best parties they had ever attended!    After the party kids left, hubby and I swam in the pool too for a while with our kids and their cousins.  Then we all went to dinner together!  Not one of the best meals - but the company was great!  After dinner, we split up to our rooms.  My dd8 stayed with her Aunt and baby because her hubby couldn't come because of their diatbetic cat that needs shots every 12 hours of insulin.  So they watched a movie and had a special girls night after the baby fell asleep.    My hubby and I and the boys watched a movie (hubby was snoring half way through), then went to sleep.  My cousin & her hubby did the same with their boys.   This morning we all had a really nice breakfast together.  In fact, it was all so nice, we decided to do a weekend overnight together next year at a different hotel.  Not the party, just the family overnight.  It was really nice.   Now, I am home - exhausted.  Ds10 is cranky because he did not get enough sleep after all that swimming.  I am sore, as the bed was not so good, and I didn't sleep well.  I may have gotten 4 will probably take me 2 days to recuperate!!  Of course, the rain has not helped. NJ is still in a state of monsoon!    Overall, it was worth it...the weekend was great!