Wednesday, July 20, 2005

Remicade Day Tomorrow/Feeling Blue

Tomorrow I go to the NYC for my Remicade infusion.

Hubby takes me and we usually like to make a day of it.  (except last month when we had the kickball game in the evening, lol)  We leave the house about 8:15am for the 10am appointment.  Traffic going into the city has made the ride time range from 25 minutes to 2 1/2 hours.  The latter was a real bad accident on the GW Bridge that really mucked up the whole commute! (fingers crossed for tomorrow!)

Lately, the traffic has been pretty good, averaging about 40 minutes.  We use the extra time to have breakfast together in the hospital cafe. 

During the infusion, I usually read a magazine and talk to hubby.  He usually fields cell phone calls from work and chats back. 

The RN's are fabulous.  They pamper you like you are at a spa, not in a large hospital room with 5 recliners for 5 patients having varying infusions for varying types of auto-immune disease.  They have become friends and somehow remember all their patients and the info we chat about, tidbits about kids and life.  The RN's will serve me lunch while I am hooked up to the IV.  I will have the tuna salad sandwich on wheat, it is one of the best I have ever had!  LOL  I round it off with a bottled water and sometimes a banana.

I have an appointment with my rheumatologist after my infusion.  Things are going well, I suppose the big discussion will be about my blood sugar.  I intend on her being pleasantly surprised by how low it will be when the results come in on Friday am.

Hubby will then take me home and I will head into bed for a nice long nap until dinner! 

Thankfully, the Remicade seems to be effecting me less.

The kids are so wonderful.  They all worry about when it is infusion day and try to be helpful.  They will be with my dad for the day which is nice for all of them.  They understand I need to rest afterward and try to be quiet and will let me sleep later the day after.  The kids also told me today that they can tell the Remicade is making me less tired and that they are happy.

It is such a strange thing.  I am so happy that they are considerate, yet, I worry, is it ok for them to have to worry about these things? 

As it is, their world is different since 9/11.  They all know the kids whose dad did not come home.  They know how scary  it is to "almost" have had your dad in the building.  They know dad's good friend did not come home and that their kids didn't get to hug their dad again.  They know that there are really bad people out there who do really bad things and how to do a "lock down" drill in school.  Things I never had to worry about.

And they worry about their mom being sick.  Another thing I never had to worry about. 

I was 19, almost 20, when my dad had a mild heart attack.  They did this "ultra new" balloon angioplasty, (not new anymore) and it seemed so surreal and I was so worried during his two week hospital stay.  He recovered beautifully, and is still going strong at 65.

But, I remember turning to my friend late that night after the heart attack, before we had a treatment plan, and saying "I am 19, I am too young for this to be happening!  I figured my parents wouldn't have problems like this until I was in my 40's!"   How naive, huh?

Now, here my kids have had to deal with me being sick for about 3 years.  Of course, actually longer, I was so sick for six months before my official diagnosis, almost bedridden with fatigue and awful joint pain.  I don't know if my daughter, my youngest, remembers me any other way.

There is no choice for them or me.  You play with the cards you are dealt with in life.  Sometimes you come up aces, sometimes, two's and three's. 

I have been blessed.  I have an ace of a husband, aces for kids, aces for parents, aces for support in my Loopies, aces for friends. 

That's a lot of aces for one person's deck.  I guess it was inevitable to end up with bad cards somewhere, I will take them with my health.

I hope I give them all back aces in the ways that I can.  I do love them all fiercely.

I have learned so much more about love and life and appreciation since being diagnosed than I would have had it not happened. 

It isn't that it doesn't suck having RA and Lupus - because it does, big time!  But, there are always unexpected rewards in something that at first seems bad.

I needed those two's and three's for my full house I guess.

I think it will be the same for my kids, too.

Be well,

Dawn

 

8 comments:

jckfrstross said...

Dawn wishing you a good day tomorrow!!!!!! Thanks for sharing your life :)

Deb

meanbeansuzay said...

I'm so happy that you have such a terrific support system!  I wouldn't worry about your children being concerned about you... and being concerned at an early age... love is a concern we all share for the rest of our lives, worry just falls into that realm of love.  They are just fortunate to learn that unconditional love earlier than most.  They must have terriffic character.  Although I do not know much of your condition - I hope that improvement follows in your every step. :)
peace to you & your friends..

Jill
http://journals.aol.com/meanbeansuzay/thoughtsonapage

sdoscher458 said...

I wish they would find a cure for all these debilitating diseases, I wish it with all my heart.  You manage to have an upbeat point of view that is remarkable, maybe some day soon someone will yell "Halleula!! I find it!" I keep hoping...Sandi

thebaabee said...

Dawn,
First I want to say that I am very happy that the Remicade infusion are helping  you.  It is so wonderful to hear that a fellow sufferer is feeling better.

I often have those concerns regarding my children.  I have noticed a change in them since I became ill.  They are very caring and concerned.  Each of my children have reacted differently.  Which is a result of their personalities.  My son checks in whenever he is out.  One time he was on his way to work and saw an ambulance heading up the road.  He called to make sure I was fine.  My daughter on the other hand changes her mood often.  She helps out here but sometimes gets upset because she thinks she does more than her brother (which is right).  They have seen me taken out of here by the paramedics (sometimes unresponsive) after I have had a seizure or chest pain, etc.  I think it is making them stronger and more sensitive to others.

I will be praying for you tomorrow.

Love bunches,
LuAnne

P.S.  I spent the day on Sunday at a fellow Lupie's house.  Got to meet other Lupies from other parts of the country.  I mentioned you.  Told them that you were not far from there at all.  Maybe next time we can meet for lunch or something.
http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS

sinnermeetevil said...

But, I remember turning to my friend late that night after the heart attack, before we had a treatment plan, and saying "I am 19, I am too young for this to be happening!  I figured my parents wouldn't have problems like this until I was in my 40's!"   How naive, huh?

i know how you feel!

I wish you well. I love NYC!

tlgf1968 said...

"I have learned so much more about love and life and appreciation since being diagnosed than I would have had it not happened."

i understand ... completely.  i feel the same way.  hope your trip to nyc went well.  you're in my thoughts and prayers ... :)

blessings,

trace

fisherkristina said...

Oh, I absolutely love your positive attitutude!  You go!  
Thank  you for visiting my journal!
So what exactly is an infusion?  

Krissy
http://journals.aol.com/fisherkristina/SometimesIThink

klconard1 said...

Dawn dear, I am praying you are able to rest well after your remicade infusion and that it is continuing to work for you!
Bless your heart dear, your children sound wonderful!
loving you
karyl