I like this PSA.  I think the doc is coolio.

Enjoy,

I’ll be back,

The Nugget. She approves!

I’m considering a total ‘do over’ as my grandkids say.  I want to change the layout of this blog. Hmmm, I dunno… What I am doing today though, is update all my sickie links, some were broken.  I’m adding to it and also I will be doing the same for the blogroll.  It’s another I’m-stuck-in-bed-day and I sure don’t feel like doing the bills, Ha!  So I’ll be here dinkin around.

Pictured above is my lovely toothy grinned granddaughter, The Nugget!

Until next time

My Angel!

I finally made it to see the rheumatologist at the hospital. I had to cancel my appointment a couple of weeks ago because my dad showed up at my door in a state of dementia.  I didn’t give them the reason why I had to reschedule, and they set the appointment out a few months.  I was so upset. The next day they called with an opening for the following week.  It’s unheard of there so I figure God was listening.

It wasn’t easy getting ready to go.  For the past month, maybe even two, I have been mostly horizontal.  My body is failing me in so many ways it’s hard for me to even talk about it.  I laid in bed until the last possible moment time-wise and then climbed the stairs to get in the shower.  I hate to say this or even type it but showering is near impossible for me.  I have to use a step stool to sit on, ugh, I won’t even go there.  So my and C finally get into the car and we are almost on time for the hour and fifteen minute ride.  I’m out of breath, sweating like crazy (it was about 40 degrees) and shaking.  All I wanted to do was go get back in bed and close my eyes and pray.

Minutes after meeting the doc I was hopeful.  He LISTENED to me, very important in trying to diagnose.  He asked so many relevant questions.  I felt like I was being heard for the first time in a long time.  He talked to us about the tests he was going to do and wants to see me back in 4 weeks.  I was a little surprised as I thought it was a one shot deal.  I want him as my rheumatologist and am going to ask when we go back.

Since my appointment was the last of the day, their labs and x-ray were closing down.  He actually ran to his office to put the orders in and walked us to the lab.  I have never ever seen a doc go out of his way like that.  I actually cried.  What a doofus, I know.  It felt good to have some hope.  I need answers just as much as I need some relief.

Have you ever had a doc go above and beyond?  If so, is this the norm for your specialists?

Until next time

I am bed-bound at the moment and pretty darn low.  I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me.  I’m just going to post this awesome video about Erica.

The Arthritis Foundation has a campaign called the Power of 10.  You watch the video, forward it to 10 people, and give a gift of 10 dollars.  Let’s spread the word.  Just click on the Power of 10 link and check it out.  What a really great simple way we can all make a difference.  God Bless.

Thanks for hanging in there with me,

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~

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!

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

Cloud to Cloud Activity from Lonny Quattlebaum on Vimeo.

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

Reaching

Ice on Top

Stuck in the Middle

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

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

November 24, 2009

Proceeds from the song, “LUCY,” will be donated to the Lupus Foundation of America and the St. Thomas Lupus Trust

Washington, DC, November 24, 2009 — Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund research on the disease lupus. The song was created to honor Cook’s 92-year-old grandmother, Lucy Cook, who has been living with lupus for years and Lucy Vodden, a childhood friend of Lennon’s who recently passed away at the age of 46 after a long battle with lupus. Vodden was also the subject of a drawing that Julian created which inspired his father to write the memorable Beatles hit song “Lucy in the Sky with Diamonds.” Proceeds donated from the song, “LUCY,” will be shared equally by the Lupus Foundation of America, Inc. (LFA), and the St. Thomas Lupus Trust in London.

Sandra C. Raymond, LFA President and CEO, issued the following statement:

“We thank Julian Lennon and James Scott Cook for their generous support, which will not only help fund lupus research, but will also go a long way to help raise awareness and draw international attention to this perilous disease. All proceeds from the song will be restricted for use in LFA’s National Lupus Research Program, Bringing Down the Barriers, which directs grants to lupus researchers in academic medical centers throughout the United States for research on the causes and epidemiology of lupus, pediatric lupus, lupus kidney disease, cardiovascular disease in lupus, adult stem cell transplantation, novel approaches to the development of new treatments, among other areas.

“We applaud Julian and James for calling attention to the urgent need for lupus research. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a new treatment for lupus. In fact, to date there has never been a drug approved specifically for lupus, since the disease was discovered more than a century ago. Physicians who treat people with lupus often must rely on medications that have toxic side effects; some side effects are worse than the disease itself. For people with lupus, finding less toxic therapies is vital to not just their quality of life, but for many, their survival.

“Lucy Vodden and Lucy Cook represent people with lupus around the world who are either living with lupus, or have succumbed to the disease, demonstrating the varied and sometimes devastating impact that lupus can have on individuals and their families. This life altering disease typically strikes young women in their childbearing years, yet a public opinion survey demonstrated that 80 percent of women know little or nothing about the disease.

“Our hope is that the efforts of Julian and James will inspire others, and serve as a catalyst for the public to join us in working to change the future for the millions of people around the world like Lucy. We encourage people to pay tribute to both of these women and all those living with lupus by downloading the song ‘LUCY’ through iTunes beginning December 15, 2009.”

Related Information

Julian Lennon, decade later, back in music biz with ‘Lucy’

from   http://www.lupus.org/newsite/index.html

After report I would go and check everyone’s vitals, see if they qualified for any medications.  Some of the patients wanted to talk, others wanted me to just get the hell out of their rooms as fast as possible.  None of the patients wanted anyone to be a part of their nightmare, as they called the withdrawal process, to see them at their worst.  Most were embarrassed and wanted to make sure that I understood that they weren’t bad people.  I loved my job, I felt that I had found my calling, but I was so soft.  I couldn’t get that hard-ass attitude that was needed when they would try to trick you into letting them break the rules.  Drug addicts are the best manipulators in the world.  I know, I was with one for 10 years.  All of this is coming back to me today.  Today I am in withdrawal.  But I am home-not in a facility, I’m not an addict but a chronic pain patient, and no healthcare team is seeing me at my worst- my family is.  I am dosing down off of a narcotic pain medicine that does not lower my pain levels.  Withdrawal is part of the package, you can’t tell your body to mellow out, I wish you could.  Am I an addict because I take pain medications?  I say no.  I am trying to survive, and have a quality of life that is livable.

I have been through so many different ‘things’, the only word I can come up with, with this disease.  It has ripped me apart.  I have found strength in myself that I have never known.  I have come face-to-face with prejudice.   Hatred almost.  For taking narcotic pain meds.  Some people think that I shouldn’t.  I’m not a cancer patient! To that I say, no I’m not.  A cancer patient has foreign cells attacking their body, I have my own cells attacking my body.  Why would the pain be different?  Because everyone knows what cancer is. and autoimmunity is not that well known. A cancer patient has a chance for therapy to eradicate the foreign cells with chemotherapy and radiation.  It doesn’t always work, but there is a chance for recovery.  I don’t have that chance.  They can’t kill my own cells to stop them, they are mine- not foreign.  There is no cure for me.  I am in the process of finding the right mix of medications to stop or slow down my system from attacking me.  Some days I wish I had cancer.

Wow, what a rant!!  Like I said, I’m in withdrawal.  Self-induced to get off of one medication so I can try another that hopefully will bring my pain level down enough so I can live my life without constant pain.  An article showed up in my email and it is about chronic pain patients with depression.  After reading it I was so pissed, until I remembered-people just don’t get it.  If you are CHRONIC PAIN patient, your pain is there ALL THE TIME.  Acute pain, probably get a scrip for pain meds and then none because the pain goes away.  Chronic pain=always. sigh.  The first paragraph of the article states that ‘they are more likely to stay on them long-term’, duh!! If you find something that works, you stay on it!!  Your chronic pain isn’t going anywhere.  Also, ‘they are likely to become dependent on them’. another duh.  Where are the statistics in this article that states that people with legitimate chronic pain are less likely to abuse narcotic pain meds than ‘regular’ people.  I’m going to have to find that now.  I am a chronic pain patient.  I am on one of the biggies for narcotic pain medication.  It’s not working for me.  I am dosing down off of it so I can stop taking it.  I will try something else.  I’m not stuffing more and more into me.  I’m doing the logical thing.  I think most chronic pain patients would do the same.  All we want is to be pain-free, or at least a tolerable pain so that we can go about living our lives as we used to be able to!  Story below that got me on this rant.  Until next time

Michelle

Depressed pain patients more likely to get opioids: study

Reuters Health UPDATED 2009-11-18According to a new study, chronic pain patients who suffer from depression are more likely to be prescribed narcotic painkillers such as morphine and codeine. Researchers also found that depressed patients were more often given higher doses of these opioid medications, and they were more likely to remain on them long-term. Researchers say their finding suggest that more study is needed on narcotic prescribing practices for depressed patients, especially given that they are more likely to become dependent on these drugs.  Read full story >

via Depressed pain patients more likely to get opioids: study.