The Change

My dear, sweet J-land friend, Sandi is responsible for this entry.  You can visit her journal here Life Is Full Of Surprises , and in particular, this entry: Sorry Still Ranting.

At the end of Sandi's rant, she queries, 'but is anything really the same since 9/11?'

At first, I thought I could read that and just go on reading other journals, but then I realized that, because, in fact, NOTHING IS THE SAME SINCE 9/11, I could not go on.

I had to come here and do this.

I wish, how I wish, everything was the same.  I know, that for so many of you, not in the NYC or DC metro areas, life probably has gone back to what it was before.  September 11th may just be something you think of in September, or when you see a special on TV.

Others out there, may have family or friends in the military, so 9/11 is never that far from your mind. Especially, knowing that were it not for that day, your loved one would probably not be in harms way, at least not perceived to be, because they wouldn't be in Iraq or Afghanistan.  Obviously, there is danger for our soldiers whenever they are in uniform -  I think you know what I am getting at.

It is hard for me to describe for those not in NY/NJ what the emptiness is like.  When the Towers fell, it took a little something from inside all of us that live here in their shadow.

Tomorrow, I go to the city for my infusion.  As I drive over the GW Bridge and look south, as I do each trip, the skyline is forever changed. 

It looks strange, altered, and off kilter.

The impact of looking at that skyline has not lessened over the years.  It is still as shocking to me each and every time as it was thefirst time, 9/12/01, when I looked at it.

The smoke is not there now.

The huge gaping hole in the skyline still is there.

I never realized the absence of something could be so 'present', so huge and alive in its emptiness. 

NYC has been likened to a living breathing beast.  Sadly, its tail has been cleaved off.

And, yeah, they could rebuild, but it will never be the same. 

It isn't just on the days I go to NYC that I feel 9/11 and its impact, its emptiness, in my life. 

Each day, my hubby goes off to work in NYC.  Into the belly of the beast.  The city, as a whole, is better than it ever has been.  Less crime, more police, and the people themselves are more aware of their surroundings and the plight of their fellow man, than ever.  All good things.

But, the worry is there. 

To the terrorists, it is still a place of targets, of buildings and icons that represent the American way.  

There is the UN, the Empire State, Wall Street, Central Park, Rockefeller Center, Madison Ave, Park Ave, South Street Seaport, the GW Bridge, the Brooklyn Bridge, Battery Park, etc., I could go on and on...

Targets, all.  Places that my hubby will be in and around, several times a week, every week.

So, the worry is there.

Life does go on.  It is changed, it is different.  Each day that we, all seven of my immediate family, are back in this house at the end of the day, is a day of gratitude. 

A day to be treasured. 

The fragility of life, that it ends in an instant, and is spared on a trivial change of schedule, is not lost on any one of us.

Even the kids.  They walk past the 9/11 Memorials made by their respective schools for the people of the town lost, specifically, a school mates dad.  They know their dad is in NYC every day, where that dad never made it home from.

Tomorrow, I will go to one of those targets, the American Museum of Natural History, with my Hammer.  Life cannot be stopped by these extremists, these terrorists. 

I will not let them win by staying home, by not living.

But my life is forever changed.

Be well,
Dawn

 

Busy Busy Life

Hello J-land! 

First, I want to give a shout out to everyone who has left me comments!  Thank you, so very much, your support keeps me going on the tough days.... I am sorry I haven't been around to journals lately.  Hopefully, I will have time soon!

Second, I want to give a shout out to an awesome new website that is about jewelry making.  It is a friend of mine's daughter who runs the site.

making-jewelry.com - Making Jewelry Home Page

If you are interested in beading and making jewelry, she makes it fun and easy and has great advice!  Even a newsletter to sign up to for tips and hints!

Third, a quick update.  I am off the prednisone, but boy, have I been fatigued.  It has been tough.  One day, I forgot to take my antiinflammatory, Feldene, and I had a terrible day!  I realized at 8pm, exactly why....big duh.  

Sometimes, the brain fog is my worst enemy!  I even have my pills in one of those old person am and pm cases, so I have no excuse!!!  It is right NEXT to the sink.  How I missed it... I still do not know.

The kids are all healthy!  YAY!  The kids are all very busy!  LOL  Baseball season has started again, and hubby is head coach for Fuzzy's team.  That makes life around here even more hectic, but it is worth it!  :-D

This week I have my infusion of Orencia on Wednesday and then Hammer and I will spend the day at the Museum of Natural History.  Hubby will rejoin us for dinner and then we will go to the annual Issac Asimov Astrophysics debate, which is about parallel universes this year!  Hammer is very excited... this is his 'thing'!

Pumpkin has two Brownie meetings this week because they are doing a special project.  I honestly don't know how much more can be crammed into a week, but the boys also have to go to the orthodentist! 

Oh, and Pumpkin did great with her testing last week.  She felt the tests were easier than the prep work that they did in class.  Figures, all that stress for nothing!  She really has to learn to be easier on herself.... yikes!

Well, it is all a good busy.  Happy busy.  Life is full and that is good. 

Be well,
Dawn

 

I think I did it!

I have somehow managed to wean myself off the prednisone!

Yay!  :::: doing the Snoopy dance ::::

Yesterday, I took my last .5 mgs.  For the last week, I have been alternating between the 1/2 and none. 

Today is my first day with none to be followed by tomorrow, with none! 

My body is fighting it still.  Not horrible, but enough for me to notice.  I can push throught the pain and swelling though, because it is worth it. 

I think by the end of the week, the 'withdrawal' should be over and it will be a relief. 

Prednisone, as most know, is bad for many reasons.  It keeps weight on your body, and can mess with your blood counts.  It started to do this to me.  Not my sugar, which is common, but my cholesterol and triglycerides both shot up. 

I am hopeful that they will return to normal when my internist retests me at the end or April/May.

Thank God, the Orencia is working!  Otherwise, I would never have been able to even attempt getting off of it.  Very soon, my body will adjust, and the prednisone will be a memory.

I am realistic though, that there may be times when I need a quick taper, but, I am hopeful that I will avoid daily prednisone for at least the forseeable future!

On the homefront, the kids are mostly better!  Fuzzy's asthma situation is being managed well enough for him to attend school.  This time of year is tough.  Pumpkin's ears are good, and she is in school, too.  Hammer, has a bit of a cold still, but since I homeschool him, we are working around it!

I hope this finds you all enjoying Spring!  ha ha  Here in NJ we had spring in January with temps in the 60's and now it is in the 30's and 40's.  Go figure!

Be well,
Dawn

 

I am still Here!!!

I am here! 

I am hip deep in a sick child, birthday dinners, family party, another additional sick kid, being sick and another sick kid! 

It is fun to be me!  NOT!

It can be tough to juggle family life with sick kids, making up school work, life and RA, so, something gets neglected.

Besides a good night sleep losing out, so did J-Land.  I am sorry that I have not posted or visited anyone recently.

I will try to get back to normal soon, as soon as the several days attacking me at once, settle back down to just one day at a time.

Know that you are all in my thoughts and prayers....

Be well,
Dawn

 

Bracelet #2 - as promised

Here is the second bracelet that I made today!

I can't put up a picture of the first because my daughter is sound asleep wearing it, but I will try to get a picture of that one tomorrow!

It was fun making this one, too.  Tomorrow, I will be giving it away to one of our favorite teachers.  She taught both Pumpkin and Fuzzy in 2nd grade, and she has become a wonderful friend.

Red and white are the school colors that they wear a couple of times a month on scheduled days.  Now, she can accessorize and think of two students who adored her!

As far as the beading being hard on my hands, I have not found it to be hard yet.  I am taking my time, and letting the tools do the work when I crimp a bead, not me.  I lay everything out and work very slow, resting in between.  Sewing got too hard for me because of pushing the needle up through fabric, but so far...so good with the beads!  Of course, this is very basic stuff.

I will put in a plug for the AC Moore store.  They have a lot of great how to booklets for getting started, and I just picked one that was easy to read and had lots of pictures!

I will put up more pics as my projects progress, I have to get what I gave my mom, back just to do a quick picture! lol

Be well,
Dawn

 

Adventures in Beading

I made my first jewelry beading project! 

I made a lariat style necklace and matching earrings for my mom because she helps me out so very much at home!

It came out nice, I think... I should really take a picture of it! 

I also made my daughter a bracelet, which she will thrilled about receiving when she gets home from school! 

I thought it would be too hard for my to do with my hands, but it turns out that it is good exercise and not as hard as I thought it would be at all!  The key seems to be having the right tools, too.

I am excited about this new hobby and where it may lead!

Just wanted to share a quick one with you all today! 

I hope everyone in J-Land is having a great day, like I am today!

Be well,
Dawn

Two Friends for You to Visit!!!

I have two J-land friends that I would like to give links for everyone to go visit!

First is an old friend, Luanne.

LUANNE'S LIFE LIVING WITH LUPUS

 

Luanne, being a wonderful and supportive friend, here in J-Land, and off, decided to comment on what having her chronic illness brings to her life.

 

Please go pay Luanne a visit and say 'hi' from me!

 

The second, is a new friend that recently found my journal and started her own!  Please go visit Tish, she needs some support and encouragement in her life right now!

 

The Critter Family

 

Thank you kindly, dear friends.  Now, shoo...go visit!

 

Be well,
Dawn

Type your FIRST REACTION when you hear these words:

1. I need: a hug
2. Sex: more is better!
3. Relationships: hard work but worth it
4. Your Last Ex:  long gone...
5. Power: misused and abused

6. Marijuana: illegal
7. Crack: bad new and illegal
8. Food: hungry
9. The President: sadly stupid
10. War: a demonstration of what being an intolerant and judgemental person brings when multiplied from one to many

11. Cars:  Trucks
12. Gas Prices:  too high
13. Halloween:  my kids
14. Politics:  the two party system has died but no one gets it
15. Religion:  don't need it, need only GOD and Jesus message of love

16. my space: will not be used by my kids
17. Marriage: wonderful adventure
18. Fashion:  just be comfortable and/or classy
19. Brunettes: my hubby, daughter and best friend 
20. Redheads: Fiery passionate

21. Blondes: Have more fun!  Just ask me!
22. Work:  grateful that I don't have to do it anymore
23: Pass the time:  computer
24: Football: Love my NY Giants and the Jets!
25. One night stands: yuk

26: Pet Peeve:  the bathroom sink not being rinsed after teeth brushing, makes me gag
27: Pixie Stix:  too sweet, but loved them when I was a kid
28: Vanilla Ice:  a one hit wonder of the 1980's
29: Porta Pottie: GROSS!
30: High school: to quote Led Zeppelin 'good times, bad times, you know I had my share'

31.  Pets:  love all furry creatures
32. Pajamas:  tee shirt and cotton pj pants, hate flannel, too hot
33. Wood:  metal, marble and doors - my hubby's work
34. Surfers:  shark bait
35. Pictures:  love my digital camera

That was fun... give it try everyone!

Be well,
Dawn

 

The Zen of Chronic Illness Redux

I got some great comments to my last entry, thank you everyone!

To be clear, I wanted to express how having a chronic illness has affected me in my last journal entry.

A few comments mentioned how being chronically ill can affect a person negatively. 

Yes, it can.  However, I think that is something anyone with a chronic illness has to strive against.  You can't let it define you, or bring you down, you need to make it a positive influence in your life. 

It isn't easy, and not everyone can do that.

Someone mentioned having an 'Invisible Disability' makes it harder. 

Yes, it does.  It is something I deal with all the time.  You can't tell from looking at me that there is something wrong.  Education and patience is the key.  And, having a good sense of humor, often helps me get through akward misunderstandings.

The bottom line for me is about the struggle, the suffering.  I won't let that ruin me, make me bitter, depressed or withdrawn. 

That is not to say that I don't have bad days, or struggle with coping, because I do.  I wouldn't be human if I didn't, but there are more good days than bad because I fight to make it that way.  On the days when I am down, I stop and count my blessings, force myself to reflect on all that is 'right' in my life, rather than all that is 'wrong'. 

To sum it up, I will strive, I will work, I will fight to be more than my disease. 

To be a more empathetic person. 

To be happy and find more joy in life, in spite of my limitations, and because of them.

And, I will share my efforts to do that here, in my journal, in hope of inspiring others who read my journal and struggle with chronic illness, or their own battles, whatever they may be.

Love to you all...

Be well,
Dawn

The Zen of Chronic Illness

 Yes, you are getting a watershed of journal entries.

I don't know why, sometimes, it just happens.  :-)

That said, I have been pondering something for a while now.

Am I a better person as a result of having been afflicted with a chronic illness?

I think first you have to think about what that means.  I need to define it in my terms, at least.  In defining being 'good' and 'doing good' as a person, does scale matter?  I don't believe so.  I think that lighting just one candle in the darkness and bringing light to your immediate world is important, and sends out ripples farther than we see at first look.

My illness presents certain limits of scale.  I cannot be that person that stands on her feet all day assembling and delivering meals to the housebound, or nursing the sick, or teaching the needy.  I am not blessed to be so wealthy that I can give away money that will make an immediate and measurable impact on the world.

I do give to the needy what I can, when I can.  I give the clothing that no longer fits or is no longer wanted to organizations that get it to the homeless.  I do the same with toys and household items, rather than sell them at a garage sale.  Giving them away to those in need, is my way of giving back.

I did the same before Rheumatoid Arthritis or Lupus was ever on the radar of my life.

However, there are things that have changed in the smaller scope of my world.

I am definitely more aware of people around me who are struggling.  If I am out at the store, and I spot someone having a difficult time and I can help, I do.  I will help with bags, or run to get a door.  I know how hard it is for me when I am having a bad day, so I try to help others when I can.

I appreciate the little things in life so much more than I ever did before.  Sitting at home and watching a movie with the kids can be just as exciting as being at a hockey game.  I love the quiet moments and try to make them special, since often it is all I can manage to do.

And, when it is a good day, and I am able to play kickball, or basketball or go for a long walk, or whatever with my family, I savor the sweetness of those victories, much more than I would have before being diagnosed.

I think I have become a better wife, too.  I am able to let the little things go easier than before.  Men and women are just different and it is okay.  I am happy for all the help he gives to me and understand that he has his own way to do things.  It is great that he is doing things for me and the kids and the house.

My hubby has this way of still making me feel like the best wife and the sexiest woman alive.  There are so many days that I don't feel worthy of either of those titles.  If not for my mom, the house would be a wreck, and let's face it, t-shirts and pj pants aren't all that sexy, but somehow, he makes me feel good about me.

I don't know if our relationship would have grown in the ways it has if not for the RA.

I also have found the most amazing group of friends online that have Rheumatoid Arthritis and some also with Lupus.  I have been in an email loop with about 16 of them for 3 years now.  We share everything about our lives and our disease with each other.  There is a level of support and understanding that you just can't get from those who do not have disease.  It doesn't matter if they are your spouse or parent, child or best friend.  Sometimes only those in the same boat can help you row through the rough seas of a chronic illness.  I am blessed by them every day.

I also have friends that I have found online here in J-Land.  Some have this disease, or another chronic illness, most do not, but I am blessed to have them in my life as well.  We laugh together, support each other and cry together.  Our friendships are real and full.

I don't think I would have started an online journal if I didn't have RA and Lupus.  The desire to reach out and share my daily struggles and therefore, maybe help someone cope better with theirs, is what prompted me to start this journal.

So, there you have it.  I have made my case, what do you think?

I believe I am a better person for having this disease.  I believe that I am sending out many more ripples of that goodness, thanks to this diagnosis.

Does that mean I am happy about having it?  Heck, no!  It sucks!

But, I have it, so, therefore, I choose to make the very best of it.  I choose to Carpe Diem, Seize the Day.  There are worse diseases out there.  Far worse fates.

I will take up this burden and not let it bring me down, but force it to build me up and make me better.

And, I thank God for each and every day that I have the opportunity to do that.

Be well,
Dawn

 

 

Some More Silly Questions!!!

I am jumping on the band wagon here...

Borrowed from Tish at  The Critter Family!

 Who Borrowed from queenb8261 who borrowed from Barbara who borrowed it from Hadon who Borrowed.......... from a Beautifulmess.....

Silly Questions Part 2

1. When you looked at yourself in the mirror today, what was the first thing you thought?

Is that really me? Who is that moon faced woman?  (I stole this from Tish!!!)

2. How much cash do you have on you? Maybe $10??

3. What's a word that rhymes with "DOOR"? Floor

4. Favorite planet? Earth!

5. Who is the 4th person on your missed call list on your cell?

My dad's cell!

6. What is your favorite ring on your cell phone?

The Imperial March from Star Wars (think Darth Vader walking on screen for the first time in 1977)

7. What shirt are you wearing? A green long sleeved Eddie Bauer t-shirt of my hubby's!

8. Do you "label" yourself? No, not really but if I did, it would say, 'Optimistic, loveable, woman with RA and Lupus, homeschooler of one child with Asperger's Syndrome, and PTO mom to 2 more!  Wife, to a wonderful hubby, and the daughter of two of the finest people ever to walk the earth!'

9. Name the brand of shoes you're currently wearing? Isotoner slippers

10. Bright or Dark Room? Bright, the older I get, the more light I need!

11. When was the last time you touch something fuzzy? I just petted my cat, Pumpkin, on the way to the computer!

12. When was the last time you listened to "Last Christmas" by Wham? Just this last Christmas!  LOL It is on the radio a lot here!

13. What were you doing at midnight last night? Watching the 'Amazing Race' on Tivo with my hubby!

14. What did your last text message say that you received on your mobile? I have never received a text message! :-(

15. Where is your Mail? Usually on a table in the living room or in my bedroom.

16. What's a word that you say a lot? My daughter says it should be 'sh%t' or 'I love you!'  Personally, I think her second choice is the correct one!  LOL

17. Who told you he/she loved you last? Pumpkin Muffin, my daughter!

18. What was the last fluffy thing you touched? Again, my cat Pumpkin!

19. How many drugs have you done in the last three days? I take about 5 different daily meds, and one once a week and one once a month for my Rheumatoid Arthritis and Lupus. 

20. How many rolls of film do you need to get developed? None, because I have a digital camera!

21. Favorite age you have been so far? 25, the year I got married and pregnant for the first time!

22. Your worst enemy? I don't have any enemies.  But, Fuzzy, who is almost 11 and very, very annoying, says I should say HIM!

23. What is your current desktop picture? This one:

24. What was the last thing you said to someone? "I love you!"

25. If you had to choose between a million bucks or to be able to fly what would it be? The money, I could watch others fly.  lol

26. Do you like someone? Yes, I like lots and lots of people!

27. The last song you listened to? The last song I heard on the radio when I was out before was 'Photograph' by Nickelback.

28. If the last person you spoke to was getting shot at, would you jump in front of the bullets?  I would dive in front of them or pull us both down to safety, since it is my daughter! 

29. If you could punch 1 person in your life right now, who would it be? No one in my life right now! 

30. What is the closest object to your left foot? Empty Cd cases inside my computer cabinet.

This was fun!  I tag Betty, Luanne and the Other Dawn!

Be well,
Dawn

Last Friday's Five, Late... sorry

The Friday Five from last week over at Charley's journal:

Courage

1 - Describe the shoes that you wearing right now? (If none, then think of the shoes you would put on if you had to leave the house right this instant.) 

I have a pair of Merrell All Weather Slip on style mocassins in dark brown nubuck suede, they are awesome!

2 - Where did you get them? How much did they cost you? What made you buy them? 

My hubby convinced me to try them 2 years ago.  Best everyday shoes I have ever owned!  :-)  They aren't cheap, but last forever, about $70.  Worth every dime.

3 - Did this particular pair require you to "break them in?"

No, they were instantly comfy.

4 - Do your shoes match your outfit, or your belt, or are you just a mumbo jumbo mix of a fashion statement? 

They basically match everything I wear... I am usually in jeans. 

5 - Who is more shoe obsessed, you or your partner? What makes you think that?

Me, I love shoes.  Hubby have about 4 or 5 pairs that he switches between, but he could probably live with 2!  lol

This was fun, thanks, Charley!

Be well,
Dawn

Let it Snow!

It is snowing outside!  Yay!

We have about 3 inches and we are supposed to get about 7 inches more tonight.

Of course, the kids are squawking about a 'snow day' tomorrow, but I doubt it.  However, there is a lot of ice out there, so it could happen.  They will be wearing pj's to bed backwards tonight, the universal way of inducing a 'snow day'.  At least, in our school district!  lol

My infusion went well yesterday at the hospital.  I also had a check-up with my rheumatologist who is happy with my progress on the Orencia and is glad that I am almost off the prednisone.

We discussed Hashimoto's Thryroiditis, a type of underactive thryroid disease that is also autoimmune and can be common to pop up in people with Rheumatoid Arthritis and Lupus.  Next month, we will run some blood tests to check for it.

Tomorrow, Pumpkin will be having her 9th birthday party celebration with 5 friends.  The kids are going to decorate tote bags with fabric paint.  It should be lots of fun and not too messy, at least, I hope not!  :-D

Today, I am just enjoying the beautiful snow and snuggling with my hubby who was home for most of the day.

Be well,
Dawn