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Month: December 2009

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

Here’s a little info from Julian Lennon about Lucy.  I really like the song, it’s catchy.  Check out the video, it’s an interesting story, and remember you can download the song from iTunes and portions of the proceeds goes equally to The Lupus Foundation of America (LFA) and the St. Thomas Lupus Trust in London.

This is a short PSA 🙂

And now the video and song!.Enjoy and don’t forget to purchase a download. It’s helps fund research for a cure!

Until next time~

2michelle

Good bye 2009. You really blew. Sometimes.

Good bye 2009. You really blew. Sometimes.

How’s that for a wishy-washy blog title?  It’s so very true though. This year has seen some very extreme lows in our family but also some wonderful times and joyous milestones.  I have been very sick these past few months, with little reprieve and staying positive has been almost impossible at times.  My family is AMAZING.  Without them I could never make it through this crazy disease process.  I love you.

Thank you friends and family for all of your prayers and well wishes.  On my worst days I found comfort in knowing that I was loved by you.  When I thought about this post, I was going to write about all of the crazy shit that has happened to my body.  I’m not gonna. 2009 really kicked the crap out of me and in doing so, my family; especially my partner in crime The Big C, suffered.  Instead I’m going to focus on all of the good, positive things that have taken place.

Big and I celebrated 10 years together.  I am so very thankful that we found each other.  We have no doubt we are soul-mates and were meant to be.  It’s trippy when you think about life and all of the choices that you make.  Each decision you make, or don’t, brings you to where you are today.  All of those if if’s-‘ if I didn’t do this or that I wouldn’t have found you’.  We both are thankful (now) that our ex’es were complete jerks.  We learned the hard way how we want to be treated and how important friendship and respect are.  I love you honey!!

The Bean has really come a long way this year.  She went from being unable to communicate with me and screams of frustration to using small phrases.  She can express herself and for that I thank God and her wonderful ‘team’ at school.  Her teacher, speech therapist, and physical therapist are amazing, wonderful women.  This world needs more people who care about special needs kids like these women.  Amazing!  I am forever grateful.

OK, enough of all the sap.  I’m taking all of the good with me from this year and leaving behind all of the pain and suffering. Good bye 2009.  You were pretty wonderful.  Sometimes.

The Amazing Bean!
The Amazing Bean!

My New Year resolution is to get to the point where my symptoms are under control by listening to my body better, eating right and being more proactive in my treatment.  I want to will get well for the Bean 🙂

Wordless Wednesday Wideo

Wordless Wednesday Wideo

I found this amazing video on Vimeo, it’s a pretty cool site if you’ve never checked it out.  Oh wait, these are words.  Since I already blew it I’d like to credit the video-it’s by Lonny Quattlebaum, the skies in Wichita Kansas in June.  Enjoy

2michelle

Cloud to Cloud Activity from Lonny Quattlebaum on Vimeo.

Docs playin peek-a-boo with diagnoses

Docs playin peek-a-boo with diagnoses

I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!!  I went 3 years with no insurance after I lost my job.  The amount of money I owe for medical bills is astronomical.  I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha!  Good thing I have The Big C.  I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.

Anyway, back to the Medicare.  My primary care doc has given me a referral to be seen at the big state teaching hospital.  Yeeeee hoooooooo!!!!!  I finally have some kind of coverage that gets me in the door.  I am so happy.  For the past 3 1/2  years I’ve had doctors scratching their collective academic heads and going hmmm.  Then I get a diagnosis, and I get it taken away.  Peek-a-boo! It’s here and then it’s gone…  The only one that hasn’t been taken away is the small fiber neuropathy.  That’s because I had a biopsy and they could actually see it and diagnose it.  It sucks that so many autoimmune diseases don’t have one clear test.  It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame.  As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis.  Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork.  I just can’t wait to be seen at this hospital, I’ve been too sick for too long.  I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode.  It wouldn’t be pretty that’s for sure.  I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees.  As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts.  It means, shut up, you sound like one of those  people that like to tell you all about all of their aches and pains when you say hello.  If you could feel your pancreas hurting, your pretty much hurting everywhere.

Change of subject: Here’s kind of a happy thing, for me anyway-  I finally got Photoshop elements 8!!!!  I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend.  And, I bought My Memories Suite. Yeah!!!  That’s where I’ve been spending my free time lately.  I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements.  But-I don’t have much free time, or not as much as I would like that is.

The other day I was searching for the video camera.  Our house is a little ‘cluttered’ now that I’m on a break from housework, ha!  I was going through stacks of stuff in the corners of our family room and I found my bag of knitting.  I just stared at it and was like, oh wow.  When is the last time I’ve seen that bag and how did I ever have the time to knit??  I remember sitting on the loveseat upstairs at night and going through new patterns.  What life was this in?  I swear there aren’t enough hours in the day now.  And I’m home all day so I don’t get it.  It seems like I had more time when I was working full-time, but how can that be?  Maybe it’s like money.  The more you make the more you spend.  The more time you have the more you need.  I don’t know but I felt a little sad just thinking about it.

I’m off to check on some websites and figure out which ones I’m going to drop.  I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard.  I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook.  The rest is going to be hard to choose.  I’m leaving you with a few shots from this time last year.  Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice.  Enjoy and until next time

2michelle

Reaching
Reaching
Ice on Top
Ice on Top
Stuck in the Middle
Stuck in the Middle

no copy or use of photos allowed without express written consent from genius, uh I mean blog author  🙂

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