OK.  Last night we had the most magnificent lightning storm that I have ever seen.  We sat outside and watched the sky light up to the left, right, in front of, and behind our house.  It was so crazy, we were in the very middle of the storm.  Of course I was freaking out asking the Big C what the chances were that we would get hit standing out in the backyard going ooooh and aaahhhh.  He’s from back east so that automatically qualifies him as an expert on the subject.  He was counting the seconds between thunder claps and telling me how many miles away it was and doing math while I worried about our computers, the fans that were on around the baby and was it true that you couldn’t talk on the phone, and did that guy that worked at the fast food restaurant really get hit in the headset by lighting while he was passing an order out the window to a car in the drive-through lane.  I was too scared to turn on the computer and look it up on snopes.

Well, the past few mornings I have been up at the crack of dawn, literally, and the sunrises have been magnificent.  So last night I decided to dig out my tri-pod that I found on sale for $14.99 (cheap!!!) and set it up to get a shot of this morning’s sunrise.  I figured with the freakishly weird weather, it would be a really good shot.  I fiddled with all the knobs and levers and could not wait until the sun rose this morning.  I overslept the sunrise by like 15 MINUTES.  I have seen the sun rise just about every day this week and they have been absolutely beautiful from the vantage point of my backyard.  Picture perfect…  So, of course after charging up the batteries for my old Nikkon and figuring out my new tripod, I would sleep through it!  erggg…  The shot you see above is a sunset taken from my backyard a little while back.  It’s pretty too.

I’m going back to sleep.

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I want to thank Ms. Chronic Chick of Chronic Chick Talk for this really cool award, the Arte Y Pico award!  She has a really good blog for those of you who are living with Fibromyalgia and Lupus.  She can definitely relate to all of the trials and tribulations of living with chronic illness, and she has a great positive attitude that makes her blog a good read.  Plus, she’s cool and one of my bloggy friends.  Reason enough I say to stop by and say hi to her!

OK, let me see how this works, I’m gonna copy and paste the instructions (yes, lazy I know)

1. Choose five blogs you consider deserving of this award. (Creativity, interesting material, etc.)

2. Each award includes the name of the owner of the blog and his/her link

3. Each award winner has to show the award and put the name and link to the blog that has given her or him the award itself

4. Award winner and the one who has given the prize have to show the link of “Arte y Pico” blog, so everyone will know the origin of this award

I’d like to pass this on to:

Sayangku Azura

The Oxygen Chronicles

Dancing With Butterflies

Type A With RA

Living With Chronic Fatigue Syndrome

There are so many great blogs out there, it was hard to choose.  I really wanted to give one to you Connie, but I see that mine was yours once removed, or something like that…

Thanks again Chick, I really do appreciate being honored

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Arthritis Legislation Update
Dear Advocate,

As we near our nation’s birthday we wanted to share some preliminary good news regarding your advocacy efforts. Last week, the Senate Appropriations Committee recommended that the National Institutes of Health receive a 3.5% increase overall. Although the Arthritis Foundation and many other organizations were requesting a 6.5% increase for NIH, the 3.5% increase represents the first time in six years that funding for NIH research has kept pace with biomedical inflation. The National Institute of Arthritis and Musculoskeletal and Skin Diseases received a 2.9% increase with a recommendation for $523 million in Fiscal Year 2009. Due to Arthritis Foundation advocacy, the Committee specifically recommended the following in its approved bill:

“Arthritis – the Committee supports the establishment of a national data collection system to ensure that the safety and effectiveness of new arthritis treatment is understood and that they are applied in the most beneficial manner, especially in the case of childhood arthritis. The Committee also notes the strong need for a national network of cooperating clinical centers dedicated to the care and study of children with arthritis.”

This Committee Report language was first shared with our advocates and Congress during the Advocacy Summit in Washington DC. This language is extremely important and indicates to NIAMS that Congress considers juvenile arthritis a priority and one that deserves more attention.

The Senate Appropriations Committee also recommended a 1.2% increase for the Centers for Disease Control and Prevention, raising their budget from $6.4 billion to $6.5 billion (a $76 million increase). Due to the advocacy efforts of the Arthritis Foundation, including the Chapters, our grassroots advocates and our Arthritis Ambassadors, the arthritis program at CDC received an increase of $500,000, which is nearly a 4% increase, for $13.5 million in Fiscal Year 2009. Once both the full House and Senate pass their committees’ versions, the differences between the two must be reconciled, passed again and then sent to the President for his signature. The appropriations process is far from over, and we will be reaching out to you in the coming months to continue your advocacy work to let Congress know more needs to be done for people with arthritis. Thanks to all of you for continued advocacy efforts to increase federal attention and resources for both adults and children at the NIH, CDC and in states throughout the nation.

Have a happy and safe July 4th!

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He says he can still see the damage and it looks like the dermatomyositis.  Okayy.  He ran the whole shebang of labs; ANA, sed, C-reactive, Comprehensive Chemistry, RA factor, and anything else he could scribbble in.  So I call this morning to find out the results and the nurse comes on the line and tells me that Dr. wants to speak with me personally and set up a plan of action.  So I wait. And wait.  I’m thinking all of the worst things imaginable since I am such an optimist at this point in my life….why in the hell couldn’t she just tell me the numbers, she always does… finally I call and tell the receptionist I am in the throes of anxiety waiting for the call.  She informs me in an official tone that ‘Doctor is still seeing patients and cannot come to the phone. He will ring me after 5.’  Well, luckily I went back into my coma sleep so I didn’t have to smack everyone’s hands off the phone.  I so smartly decided months ago to cancel call waiting because it bugged the crap out of me whenever I was on the phone hearing that beep beep beep, only for it to be a telemarketer, or bill collector.  Right at 5 he calls and tells me that other than my ANA being positive, all of my numbers look pretty good just like last time.  He says we’re damned if we do, and damned if we don’t.  I don’t ask him what we’re damning about because I’m pissed that I worried all day for this.  He told me the plaquenil could very well be keeping my numbers at bay. Well, it’s not keeping my symptoms at bay.  I’m sick and tired of being sick and tired.

When I first came to him before I got on any meds, my numbers were through the roof and I couldn’t walk without assistance.  My PCP told me I had Lupus (prematurely based on one lab test) and my Rheumy was hesitant to say for sure what we were looking at; RA with some dermatomyositis and palindromic rheumatism thrown in for good measure.   That’s what the labs and symptoms told him.  Now he says the plaquenil is working, I’m walking much better, my numbers are low but I’m flaring more often than not.  I’m frustrated that I get a diagnosis, then have it taken away.  Again and again.  Right now I’m back to Undifferentiated Autoimmune Vascular Disease or Undifferentiated Autoimmune Disease, Connective Tissue Disease… Then it will be MCTD, then back to the early RA with dermatomyositis and so on.  Never in my life have I WANTED a diagnosis, til now, I just want to make sure I’m on the right meds for the right disease.  I don’t want any joint damage.  We tried methotrexate but it made my legs freeze and burn right down to the bone so he discontinued that but didn’t try anything else.  One thing he says he is sure of is it’s not Lupus like everyone thought in the beginning.

Is this a rambly confusing post from a frustrated woman?  Yes.  I haven’t posted much of anything lately because I have just been too sick to even want to sit down and type.  But last night I couldn’t sleep a wink after 1:30 so here I am!  I’m going to post a pic of my hands when they were on the mend.  You can see the rashy red spots, but there were no splits in this shot. I also got turned on to a video on myositis, it touches on the basics, but it’s interesting and it’s good to see someone talking about it.  And last but not least, I  posted some more photos in the Happy Snaps.  Those are cool and stress free, LOL.  Every shot I’ve gotten so far has been right in our yard.  I’m lucky to have such beautiful flowers pop up.

Today will be a better day!!

Until next time

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Towards the end of this clip the newswoman gives the call letters to the station and you can go there to get this families blog address. It makes my heart break to know that children have to go through this too.

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This is me talking to a statue of a seal downtown.  I really do need to get out more often..

This is part of the room.  Check out the funky carpet.  I actually couldn’t look down when I was walking, it made me seasick.

I thought the courthouse looked cool.

We just missed a flower show across the street from the courthouse, but I got a quick snap of this sunflower.

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Today is my birthday, it’s my birthday too yeah!  LOL  I have had that Beatles song stuck in my head since I woke up this morning.  Well, it IS my birthday!  Another year older, sigh. :)  It’s all good.  I have earned every wrinkle and every gray hair on my head, and when I think about it I had fun earning each and every one.

I have family coming over today to celebrate this rockin day and this weekend the Big C and I are going to try and get out of here, maybe spend it at the coast.  I wish the weather was better, but in fine Pacific Northwest fashion it’s rainy and crappy outside.  That’s OK though, sometimes it’s nice to go to the coast when it’s stormy.  It makes it all the more worthwhile when you finally get the campfire going on the beach.  This ol’ body is still flaring but I’ve chosen to ignore it’s call for all of my mental attention and have some fun. Thank you all my friends for the  great birthday wishes and a special shout out to my friend Az who sang on my facebook wall, and to my bff Angie for being the rockstar that she is.  She keeps me sane and anyone that can do that is amazing.  While you’re here and listening to me babble on, please check out the rock star’s site Family Life Pharmacy.  If you have no insurance (like me) you can save some dough on your prescription costs.  SHAMELESS PLUG, SHAMELESS PLUG!!!  I don’t do that for just anyone, this lady rocks.

OK, I’m outta here.  Gotta put my laptop and my coffee down and go get pretty for today!

Talk to y’all when we get back!

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Here it is, finally!  Aren’t they beautiful?  I just think that it’s so cool that there are flowers shaped like hearts.  But then again, I’m easily impressed.  Just about everything is in bloom, I’ve gotta get out there today and get some shots.

Enjoy!

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1. I can breathe easier
2. The bean is sleeping in a little
3. My daughter is home