YOU DON’T LOOK SICK!!!

No I don’t. It’s hard to explain to someone when they have no clue. It’s a daily struggle feeling sick on the inside while you look fine on the outside. Some days I am perfectly fine while others it's a struggle to even get out of bed.  It's hard to understand what you can't see.  There is nothing more frustrating to a person who suffers from an "invisible disease" than your friends/family not believing or understanding that you are actually struggling.  Check out this article and the spoon theory...may put some perspective on living with Lupus. 


http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=1&cts=1330962973921&sqi=2&ved=0CC8QFjAA&url=http%3A%2F%2Fwww.butyoudontlooksick.com%2Farticles%2Fwritten-by-christine%2Fthe-spoon-theory-written-by-christine-miserandino%2F&ei=7t9UT4yiHoXLtgevxeymDQ&usg=AFQjCNERQMkoYuzgOyrEOPlDDBpmZpEMWA&sig2=gANJ5iUNzL8PU5wn6n0vQg


LUPUS

Joint and muscle pain: Most people with lupus have joint pain (arthritis) at some time. About 70% of people with lupus report that joint and muscle pain was their first sign of the disease. Joints may be red and warm, and may swell. Morning stiffness may also be felt. Lupus arthritis often occurs on both sides of the body at the same time, particularly in the wrists, small joints of the hands, elbows, knees, and ankles.

Skin problems: Most people with lupus develop skin rashes. These rashes are often an important clue to the diagnosis. In addition to the butterfly rash over the cheeks and bridge of the nose, other common skin symptoms include skin sores or flaky red spots on the arms, hands, face, neck, or back; mouth or lip sores; and a scaly, red or purple raised rash on the face, neck, scalp, ears, arms, and chest.

Sensitivity to light: Exposure to ultraviolet light (such as sunlight or tanning parlors) typically worsens the skin rash and can trigger lupus flares. Sensitivity to light affects many of those with lupus, with fair-skinned people with lupus tending to be more sensitive.

Nervous system symptoms: Some people with lupus develop nervous system problems, most commonly headaches. It is not clear whether these are from the lupus itself or whether they are related to the general stress and fatigue of having a chronic illness. More severe symptoms-such as difficulty with memory or concentration, or numbness or weakness of the arms or legs-are not common.

Heart problems: People with lupus may develop inflammation of the heart sac (pericarditis), which may cause severe, sudden pain in the center of the left side of the chest that may spread to the neck, back, shoulders, or arms.

Lung problems: People with lupus may develop inflammation of the sac around the lungs (pleurisy), which can cause a stabbing chest pain and coughing.

Mental health problems: People with lupus may develop problems such as anxiety and depression. Such problems can be caused by lupus, the medicines used to treat it, or the stress of coping with chronic illness.

Fever : Most people with lupus will sometimes have a low-grade fever related to the disease. Fever is sometimes a first sign of the disease.

Changes in weight: Many people with lupus lose weight when their disease is active (flaring).

Hair loss : People with lupus may experience periods of hair loss, either in patches or spread evenly over the head. This hair loss is usually not permanent.

Swollen glands : Many people with lupus eventually develop swollen lymph glands during a flare.

Raynaud's phenomenon: Some people with lupus have Raynaud's phenomenon. It affects the small vessels that supply blood to the skin and the soft tissues under the skin of the fingers and toes, causing them to turn white and/or blue or red. The skin affected will feel numb, tingly, and cold to the touch.

Inflammation of blood vessels in the skin (cutaneous vasculitis): Inflammation or bleeding from the blood vessels can lead to small or large blue spots or small reddish spots on the skin or nail beds.

Swelling of the hands and feet: Some people with lupus have kidney problems, which can prevent extra fluids from being removed from the body tissues. As fluid collects, the hands and feet may swell.

Anemia : Anemia is a decrease in the amount of the oxygen-carrying substance (hemoglobin) found in red blood cells. Many people with an ongoing disease such as lupus develop anemia because they don't have enough red blood cells.

The never ending weekend

So Friday I bought myself a new toy.  Still feeling the anxiety over the sticker shock....

However this little baby takes some EXCELLENT video. 
I think I need to upgrade my computer because Karl is not going to like me continuing to monopolize his Alien.   :)  The files just lock up my 4 year old computer.  :)

So my 1st assignment was to capture this weekend's Winter Meltdown tournament at St. Louis Sports Complex.  In November our 7th grade girls took 2nd place in a tournament here.  This year, we not only didn't win a game, we played like this was the 1st time on the court.  Sloppy and lazy. 

In the 1st game Friday night in under 2 minutes Bryana had 2 LAZY fouls.  In the last game on Sunday she fouled out fairly early in the 2nd half. 




So if you want to watch some videos of horrible basketball - I've uploaded a few here:
http://vimeo.com/album/1844272

One of the downfalls of this new camera is that the files are so big I can only upload about 3 - 4 a week.  And they take hours to upload.  :(  So I will have to pepper in the other lousy games as I can. 

Poor Bryana did have to play 8 games of basketball this weekend, so some laziness I can accept.  However this was way more than just being tired.  UGLY.

The last two games of the regular season were Sunday night. Those while we lost, were MUCH better games.  Bree played much better and they were close. If she would have made half the layups she attempted - we would have won....

Here's to hoping this coming weekend's tournaments are much better.  I feel like I played 8 games of basketball I can only imagine what Bryana feels like.  UGH!

And another one bites the dust.

While my mother in law was out of town on vacation I went to her house and finished the curtains...YAY on more thing off my list!  I am almost to the point of taking on new projects...and I have no shortage of new ideas. 

Hung her Christmas present in the living room

Curtains I made and new pictures hung in the spare bedroom

Curtains I made hung in the master
(oh and that quilt on the end of the bed, I totally made that a couple years ago)

Curtain I made in hung in the living room along with MANY picture hung
Pretty sure her neighbors were happy when I left so they didn't have to hear any more hammering.

Curtain made and hung in the kitchen. 

So here is what I have left on my "must do" list before I can start another project

1. Finish quilting the cardinals quilt I started

When I finish this it will either be for sale or I will donate to
the Down Syndrome Association event as an auction item....
I am not the in to baseball.  So if you know any one who is..

2. The little doll house/barn toys.  I have all the stuff cut - just need to find the time to sew them

Have at least 3 or 4 of these to make
One next month for a birthday gift...
Wow I need to get  on this.

As soon as I finish this list my 1st "new project" will be to create a pattern to make this for my hubby. 

Don't worry if you don't know what a Tardis is...
It's a nerd thing..

Then I have purchased many a patterns to make some cute little summer dresses for my nieces  

And I have this new obsession with felt food.

Do you have any idea how much fun little people would have playing with this stuff???

So wish me luck on my last 2 "must do" items so I can start on fun new things!!

One more thing checked off my list!

So I finished Shana's T-shirt quilt over the weekend.  What I realized from this experience is I need to invest in a cutting table - or possible an indentured servant to do the cutting for me. 

My back and knees hurt so badly after the all day cutting-fest.  This body is not made for that!!

Anyway with a few minor things that I wish I would have done slightly differently - it turned out well.  And since Shana likes it, I guess that's all that matter.  Of course it's still in my sewing room so maybe she will have a different opinion once she hold it in her hands.  ;)







So now my to-do-list is down by one.

1. 2 more sets of curtains for my mother in law. However this is presently on hold because I lost the measurements for the two other sets of windows...
2. Finish quilting the cardinals quilt I started (used a different method on Shana's quilt I like better and thinking about scrapping all 30 Cardinal's t-shirts....still pondering)
3. The little doll house/barn things mentioned above.
4. Busy books - or at least finish one. :)

Since my plan was to finish the busy book(s) for Juliana's birthday in June, and the other projects seem to have reached a stall for one reason or another - I think I am going to begin the undertakings of the barn/doll house project. 

Since the sound of the spawn I have brought into the world are equating to nails on the chalkboard right now and since we have no practice tonight - now seems as good a time as any to give it a go. 

This weekend is jam packed with Tati playing at the HS basketball game tomorrow night and having a concert on Sunday and Bree's games on Saturday and Sunday - plus my monthly FUBO night tomorrow - this may well be my only chance. 

I have to admit, I have NOT stayed away from http://pinterest.com/nhobdy/ quite the opposite, I am using the fact that I have 20 plus other ideas I want to start as motivation to finish the crap (I mean awesome stuff) I already started. 

Wish me luck with my Doll house/barn project - hoping it all goes well!!  And it's as easy as the tutorial makes it look... few more pieces to cut and I am good to go!!

Pretty sure Chloe and Julie are either going to LOVE they they have things no one else does - or with their aunt would just buy them toys like all the other aunt's do.  I'll keep you posted on that. 

My newest addiction

So my newest addition to http://pinterest.com/nhobdy/ has started finished out the year of 2011 in chaos.

It all started with these great ideas for busy/quiet books if you don't know what that is here is a great blog: http://emptybobbinsewing.com/2010/06/04/birthday-week-the-quiet-book/ with examples.  So I had grandiose plans - and then keep looking and looking and finding more and more things..

Start of the busy book still unfinished because this is VERY time consuming and I haven't had the time to devote to it.....

I decided that since Juliana's favorite thing (at the time) was to look at pictures she needed a board book (see example) http://www.utahcountymom.com/2011/03/board-books.html with my family...

So I spent some time and lots of ink making this just like the sample from the blog above.  And I hate it.  It's cracked and bubbly and so that went on the back burner....

Then I found this: http://transforminghome.blogspot.com/2010/01/mod-podge-photo-letter.html 

and decided what a cool gift for my mother in law and mother so I made these....

 

and those also were very time consuming.....

And then I found these so cool ornaments: http://ayellowbicycle.blogspot.com/2011/11/pinterest-challenge-painted-ornaments.html (can't find the link to the glitter ones.  Pour mop in glo in the ornament swirl around pour out the excess add glitter - the end)

And then I found this: http://uklassinus.blogspot.com/2008/08/fabric-dollhouse-tutorial.html showing me how to make this cute thing.... and went and bought all the trappings and began to cut things out.....

And then I went into my craft room and noticed I had about 5 other unfinished projects......and it looked like something exploded in there. So I made an New Years resolution to finish the projects I have started before starting anything new...more importantly buying any more fabric/felt./buttons/do-hickeys. 

So we are 10 days into the new year and so far so good.

Finished & boxed up the quilts to be shipped to NJ (didn't take pictures of the finished purple or giants quilt)



I should put these in the mail on Friday.   

I also finished up a set of curtains for my mother in laws bedroom

So if I am correct in my calculations I have the following to complete before I can start buying and making new things:

1. 2 more sets of curtains for my mother in law.  However this is presently on hold because I lost the measurements for the two other sets of windows...

2. Finish quilting the cardinals quilt I started 



3. Finish Shana's t-shirt quilt (like the above cardinals quilt but with Shana's t-shirts) 

4. The little doll house/barn things mentioned above. 

5. Busy books - or at least finish one.  :) 

So I by my calculations I can start on my new pinterest projects sometime in the next 2 years...... DAMN YOU CHERI CHARDDDDDDD!! Damn you Pinterest!!!!!!!!!!!!

If only I could be a person who pins stuff to my board and doesn't feel the need to make all of it right now.  UGH!

Cianah gets a tattoo

After much debate and many conversations Karl and I decided to sign and allow Cianah to get her first tattoo.  The thought process is really - in less than 6 months she will be able to do it on her own.  We'd much rather make sure she goes to a good shop and has quality work done. Plus the added bonus of being able to be there with her.  More than likely when she's 18 she's not going to ask mom and dad to tag along with her to a tattoo shop.  But for now - she still needs us.  :) 

The one stipulation we had was it had to be a place that could be covered.  Luckily for right now she plans on becoming a medical examiner - pretty sure the dead won't judge her for her tattoos.  And lab coats cover alot of ground.  :) 

They only allowed one person back with her and I went 1st.  Thinking that I could switch out with Karl and allowing him to come back at some point.  No such luck.  Whoever went back must stay, no switcharoo.  :(  Stunk for Karl. 

 Here's the finished product.  When I asked Cianah why she wanted a Lion - she said "Because I'm fierce."

Of course Karl had to pipe up and say, "Since I didn't get to go back with you, I guess that means you have to get another one."  Wait what?!?!?!

Cianah of course already has her next tattoo picked out.  Of course she will have to save some money which is not always easy for her.  Not sure when the "next one" will happen.  Happy to have been there for this one. 

Day 5 - Dollywood

So the original plan was to hike on Thursday.  After the horseback ride and the white water I didn't know if my aching joints could take the hike.  So I opted to go to Dollywood instead.  Partly because this too may give me the time to meander through shops and allow me some distance from teenagers, allowing them to go their separate ways.  Another thought in the equation was it's rained almost every night (thankful once we were safely tucked in for the night) and judging by the trails on Monday on the horseback ride (before 2 more nights of rain) it would have been a muddy mess. 

So we splurged on something not in my well laid plans or budget.  My kids love roller coasters and we vaguely discussed the possibility last night, they all seemed on board.  Well no one mentioned until AFTER we paid for 6 tickets that Marie (Cianah's friend) doesn't like rides.  Marie always the trooper was fine to walk around and look at things and see shows and whatnot, but Cianah was a little less of a good sport.  (Surprise?) 

And that is how she was for the rest of the day!!!  Aren't teenagers a joy?  So Bree and Tati went on to enjoy the rides as did Karl and I. 



Karl and I rode the mystery mine and didn't get the picture, that was a very cool ride.  Then we rode the Tennessee Tornado and I was done for awhile.  Karl liked it a lot, I however got an immediate headache from the twists and turns.  Lots of turns.   So we went on to ride the train (let down compared to Silver Dollar City)  We did eventually ride the Blazing Fury, which is almost a replica of Fire in the Hole in Silver Dollar City, down to the FIRE IN THE HOLE before the last drop.  That I liked.  As a child that was the only roller coaster at SDC and we rode it over and over again. 

Tatiana and Bree on the Tennessee Tornado.  I do have to say, Dollywood sells flash drives to load the pictures at a discounted price and with a copyright release, this I like!! 

This with the fist on chin and cheesy smile, is called the "Grace Face" and they have been trying to achieve this on the whole trip.  They tried on white water and didn't get it done...they finally made it.  I still am not sure the significance, but nonetheless, mission accomplished. 



Karl and I enjoyed a little alone time and it was NICE!!  He hates crowds and yet he didn't bat an eye to go.  He's such a good man!

About Dollywood.  I was totally expecting to be visiting Silver Dollar City, but in Tennessee.  It was not the same at all.  Sure there were a few people in period costumes and there was country music playing, but that is where the similarities end.  In Silver Dollar City you can spend days walking around watching blacksmiths, glassblowers, fudge makers, and on and on.  I have fond memories of the girls making wooded trains and rag dolls and watching shows in the streets and in the saloons. 

At Dollywood, there are plenty of stores but they are all filled with crap.  T-shirts, hats, the occasional leather store but not filled with handmade stuff, just more crap.  There were shows, but only a handful and all were just musicians.  Overall I was not impressed.  Silver Dollar City is way better and much closer. 

This train was even originally in Silver Dollar City.  They didn't have a "skit" on the train ride as they do at SDC either.  :( 

We stopped after Dollywood to do an old time photo.  This too was disappointing.  This is just a shot with my camera, I'll scan it when I get home and replace it.  Can't even see the kids in the back....BOOOOO!!

The shop in Dollywood was way over priced.  This place was $20 cheaper but not sure it was worth it at all.  :( 

If you are planning a trip to the area - Gatlinburg is much prettier than Pigeon Forge.  (and has fewer confederate flags) - you will have to pay to park there. 

For sure do the white water rafting - such a rush.  If you love Silver Dollar City - don't waste your money on Dollywood.  If you are going for the rides, also don't waste your money on Dollywood. 

If you want to horseback ride - prepare to have your butt hurt! 

Don't waste your money on Cirque de Chine.

If you don't like narrow mountain roads, make sure your cabin has "no mountain roads"

I wish we had more time because I would like to hike, the view from the top of Gatlinburg's Skylift was beautiful. 

I wish we had more time to walk around and enjoy Gatlinburg.  All in all not a huge hit, but not a miserable failure either. 

Off to bed, leaving bright and early tomorrow morning. I am sad that we are leaving TN on a low, but Karl and I enjoyed some alone time today, so it wasn't all bad.