Wednesday, December 21, 2005

Merry Christmas, Happy Hanukah & Happy New Year to all my J-LAND Friends

Merry Christmas!

                              Happy Hanukah!

                                                          Happy New Year!

To all of my J-Land friends, and faithful readers, I hope that your holidays are full of family, friends, and joy!  May your New Year find you in good health, wealth and happiness!

I had my second IV of the new medicine yesterday.  No relief yet for my sore hands and other joints, but I am very hopeful that I will get some after the next IV.

As you can imagine in a house filled with three kids, everyone is busy and very excited as Christmas approaches!  There is still a lot to do, and we are all enjoying every minute! 

This is my favorite time of year, but I bet you could have guessed that already! 

I am going to sign off now for a while to spend time with my friends and family over the holiday season, but I will back to visit with you after the New Year!  If anyone wants to reach me for any reason, just send an email, as I will check in periodically at my mailbox!

Blessings to all the military men and women serving our country and a special salute and thank you to your families and friends who are missing you at home at this time of year!

Be well and be hopeful as you ring in 2006!!!


Thursday, December 15, 2005

Christmas 2005 - The Card

This is the picture that I used for this years Christmas card! 

I am sending it out to all of you in j-land to wish you Happy Holidays and Happy New Year!

Each year we take the picture in front of the fireplace, it is amazing as I look back over the years at how the kids have grown!

Our tradition is that they get new pj's and wear them just for the picture and then again for Christmas Eve.  It is just one of the holiday traditions we do with the kids.

The tree is up and the house is decorated.  The outside is decorated too.  I decorate just about every room inside the house.  The foyer, the living room, bathroom, dining room, kitchen and family room.  The kids also have decorations in their bedroom.  Is it any wonder I get tired from all of this?

This year the kids were a big help with carrying things up and down stairs and boxes up from the basement.  My hubby and dad do all the outdoors stuff, but the kids even helped with that, too. 

Christmas is at my house.  We will have between 18 and 22 people.  6 are kids!  The number fluctuates a bit because we have open invites to some family that may or may not come. 

We do it very casual.  The first couple of years I tried to do a big sit down dinner like my mom used to do while I was growing up, but I really didn't enjoy it.  Now, everything is buffet style and casual for quick cleanup!  It is wonderful because everyone gets more time visiting. 

This year I wouldn't be able to do it at all if it wasn't for my parents.  They will be a huge help.  My hubby will be too, but he will deal with the kids, and I know my parents will help with the food and preparation and the 'details'. 

We also have a Christmas Eve tradition of going out to dinner just the seven of us, the kids, my parents, hubby and myself, after church.  After dinner, we put the carrots outside for the reindeer, and the cookies and milk our for santa.  I like to read 'T'was the Night Before Christmas' to the kids, and then we get them off to bed.  Believe it or not, they usually fall asleep pretty fast!

Then, my parents, my hubby and myself open our gifts.  It is nice and quiet, and we enjoy that.  Then comes the preparation for Santa.

So, I hope you enjoyed reading about our holiday traditions and plans.  I am very much in the holiday spirit today!

Be well,

Tuesday, December 13, 2005

Use the Pain Scale for Lupus, Fibro, MS

Just a quick note to say thank you for all the great comments I received on the pain scale!   I will get back to you individually soon!

I think you could definitely us this for many other diseases also, basically, anything with Chronic Pain!  Many of us are never a number 1 or 2 because we are always on medication! 

Also, the percentages are for you to translate for you!  Those of us dealing with a chronic disease, never see 100% normal/healthy, but we all have a 'normal' for us that we prefer to be at!

Please, copy freely, just give me credit and send as many people here to read it as possible!  Who knows maybe Joe, the editor, will put a link on his page if he hears about it!

Be well,

Regarding the Pain Scale...

I decided to this Pain Scale as a way to help my family relate better to how I am feeling and coping on any given day.  I also shared it with a group of about 15 women and one man that I have had the pleasure of being in an email loop for over 2 years. 

I wanted them to have it to use for their families and friends and even doctors.

While on the Remicade I was usually between a 2 and 5.  Not bad, believe me.

Now, since it has worn off and the new medicine has not begun to work yet, I am between a 6 and 8.  Yesterday was an 8.  Today is a 6 so far. 

But I am going out Christmas shopping in the 15 degree weather anyhow.  Things MUST get done!  So, I have motivated myself this morning with coffee and the promise of a nap

Be well,

The Miller Pain Scale for Rheumatoid Arthritis

                 The Miller Pain Scale for Rheumatoid Arthritis

                                        Copyright 2005 Dawn Miller
                All rights reserved, right to copy with attribution freely granted.

0    Pain Free.                                              No medication needed.

1    Very Minor annoyance,                            No medication needed.
      occasional minor twinges.

2    Mild discomfort.                                      Mild painkillers, nsaids, are effective.

3    Annoying, occasional                               Mild painkillers relief pain for 3-4
      breakthrough pain.                                  hours, medication a must.

4    Distracting pain, but able to                      Medication a must.
     function at 100%.

5    Distracting pain, can’t be ignored,             Medication a must and limits
      must make adjustments and                    required on activities, work.
      limits to activities and work.

6    Pain constant, can still function                 Stronger painkillers required,
      but only with additional pain                     such as codeine, ultram, vicodin.
      medications and limits. Ability                   Activities must be limited.
      to function at approx. 75%.

7    Pain constant, making it difficult                Stronger painkillers partially
      to concentrate or sleep. Can                     effective.  Activities must be
      still function but requires constant             limited more.
      effort, personal care is slightly

8    Physical activity severely limited,                Stronger painkillers are only
      very difficult to concentrate, you are          minimally effective.  Limits to
      functioning at or below 50% of                  activities and grooming a must,
      normal for work, activities, personal           and rest required.
      care is moderately limited.

9    Constant moderate pain, unable to             Strongest painkillers are minimally
      work, or do any activities.  Only able          effective.  Pain is a constant, rest
      to address most basic required                  required, and you are basically 
      personal needs.                                       limited to your house; couch and bed.

10    Pain unbearable, near or in delirium,        Hospital intervention is required.
       becoming unconscious is a possibility.

Wednesday, December 7, 2005

First IV Infusion of the New Medicine

Sorry, I have not been on to update, but I have been doing the Round Robin Sick Kid Game, ugh.

Yesterday, I was off to NYC again to my hospital.  The RN's in the Infusion Therapy Room (who used to give me the Remicade) took my blood and put in my IV, each on the first stick!  Yay!

Then, I went to a private exam room with Peggy, the RN who runs the study.  I had no allergic or IV infusion related reaction!  Yay, again! 

Unfortunately, I found out that I probably won't feel any effects of the new medicine until after my February IV infusion.

Prayers and positive thoughts welcome that it will begin to help at some point!  It not working for me at all, is a possibility and that would, in plain english, really suck.

The waiting stinks because I am getting more sore as each day passes.  My hands are swollen like two baseball mitts, my left elbow is painful, and doesn't want to work properly, and my ankles and feet are hurting more and more.

But...alas, it is the holiday season, and there is no rest for the weary.  Particularly for this mom with 2 sick kids who are cutting into my shopping time!!  LOL  Gotta laugh, otherwise, I cry.

I have actually been doing a fair share of crying lately.  Dealing with the constant aches and pains, especially now as my joints are getting worse, drains me, and I get really sensitive, and can start crying at the drop of a hat by the evening. 

It isn't pretty, poor hubby and kids. 

Time to go... I will try to get back here sooner than later...

Be well,

Thursday, December 1, 2005

South Park and Yesterday at the Hospital

Thanks to Jody at DUST BUNNY CLUB OF NORTH AMERICA I now have the South Park version of me, PrincesssAurora, in my 'All About Me' section! 

Jody has just had her 40,000 hit on her journal, please go visit her to get the link to making your own South Park character and to read all about her and her wonderful family.

Her eldest son is serving in Iraq right now as well, another reason to support Jody and her family via her journal!

Yesterday I had my appointment at the hospital in NYC to be evaluated and pre-tested for the Orencia study.  A new drug for Rheumatoid Arthritis. 

I survived, all is well, and I was accepted into the study, as expected, but it was a loooooooong day.

We left the house at 9:30 am for the 11:30 am appt, hoping that we would be early enough to grab breakfast at the cafe there and still get to the appt a bit early.  We were parked by 10:30 am and done eating by 11 am.  I was taken in at 11:15 am, all in all, good so far.

The RN who runs the study and I did oodles of paperwork and reviewed my medical and surgical history then she examined me.  Then, the MD who runs the study also came in and examined me, they spoke and agreed, I am perfect for the study!  YAY!

Now, the blood work, as I may have mentioned before, my veins are very difficult, so I warned the RN, but I could tell, she hears it all the time and at first, didn't believe me.  Then, she put the tourniquet on my right arm, then my left, then back to the right and said, " You are right, your veins are shitty!!!  And, I usually say 'crappy' but you said 'shitty' first and you are right!"   Yes.  Yes I am. 

She then narrowed it down to a good spot and missed in drawing blood for the first time in about 4 years.  Then, she went and got one of the two rheumatology lab techs who spent about 20 minutes checking for where to stick, and convinced me to let her try my right hand and then, she also missed.  The study RN then told me that in over 10 years she has never seen this woman miss with blood draw, only IV. 

Yes, I am a special patient.  @@

Next, she tried the left wrist, and she did succeed.  However, by then, I was so over wrought that my blood pressure plummeted, I turned white as a sheet, and almost passed out.  I know, I am weird, most people have their blood pressure go up, no, not me.  So, then 15 minutes of lying down with my feet up.  And I had to get stuck for the TB test too.  ugh

Now, it is 1 pm and off to radiology we go.  To sit and wait.  Finally, around 2 pm I was given my 1-2-3 chest x-ray and we were ready to leave.  At 3 pm, we made it across Manhattan and I dropped Glenn at his office for a meeting he could not miss.  I then made 2 quick right turns into the Lincoln Tunnel and got home about 3:25 pm.

It was a lot longer than I expected considering I didn't even get the medicine infusion!  Yikes.  And I was starving.  lol

Anyhow, my first IV infusion is Tuesday, 12/6 and since I am a 'hard stick' my infusion room RN's that I went to with Remicade, will draw my blood and get my IV in and then the study RN will give the infusion of the new medicine.  It takes 1/2 hour via drip and then 1/2 hour of observation.  Second infusion will be Tues. 12/20 and third 1/3. 

The third will be in the infusion room (yay, I love them!), and then each month afterward, once a month IV infusions at the infusion room.

So, there you have it!  The exciting world of RA and bad veins...

Be well,