It’s a beautiful day here today. It was supposed be 60 degrees today but I think it got warmer. I sat out back for a bit today to try and get some sun on my Elvira skin. I swear I thought I heard it sizzle. Ssssss, haha it’s hard being this pale. I freckle and burn like crazy. Anyway, I brought the laptop out back and made a scrapbook page of the Nugget. One of my all time favorite pics of her standing on our lawn with her arms stretched up in the air like ‘YEAH!!!’ She’s so dang adorable. She’s also the most devious of the grandkids. She plots and plans and she has a really bad poker-face because I can always tell when she’s scheming. I guess that sounds really bad, I mean when she’s scheming to blame something on her sister, trying to sneak an extra cookie, etc. Normal 4 year old plotting and planning.
Third day into Spring Break and I still haven’t sprung yet. Haha! The sun was shining today too. Ah well, there’s always tomorrow, tomorrow (I love ya, tomorrowwwww). I did get the kitchen cleaned and all of the floors swept. I didn’t even bother steam moppin as the dogs are tracking mud through the house EACH TIME THEY COME IN. Grrrr. This is going to sound pathetic but most times I just don’t have the strength to get down and wipe the mud off of their feet when they come in. So, our floors gets some prints and after a few days I’ll steam mop the heck out of them. Or tell myself that I’ll do it tomorrow….
I spent a good portion of time today working on the computer. I have jumped back in feet first with scrapbooking. This time I’m going to make it stick. It’s something that makes me happy, and I always feel good about each page when I complete it. Whether it looks good is a whole nuther matter. It just FEELS good to do something creative.
A few years ago I went on quest for the perfect photo editing/scrapbooking software. I managed to gather quite a collection of software over the past 5 years or so. I have Photoshop and I love it, My Memories Suite which I like a lot, but there is scrapping software out there that is so user friendly it’s pretty incredible, like Craft Artist Professional 2. I bought a couple of kits from Daisy Trail, CAP2’s site, and that was all it took to get me playing in it all day. (a lot of kits on sale this weekend for $1.99! I know! this sounds like a paid post but it’s not! I love them that much!
I’m going to stop exclaiming now!) I put together a collage of me and dad which I thought came out looking very pop art-ish. I blended it in with a colored paper and made a background page which I LOVE. But since it’s our heads on the entire page, I’m hesitant to cover it up with photos and elements lol.
Aight. I’m going to take my Ambien, put on Fringe season 2 and promptly pass out without seeing any of it.
Here’s the bg page. Is it weird because it has our
heads collaged? I like it!
Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’.
You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD! You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.
I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved. Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.
Waving is a small physical activity, but a big gesture for people with rheumatic disease. It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.
My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.
Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!
Until next time,
I have been pretty quiet I know, it’s been a weird and kinda crazy summer. I finally got my diagnosis (dermatomyositis), got my first treatment; landed in the ER a couple of days later with WORST SIDE EFFECT EVER, then went on to have a series of strange days.
I woke up in the mornings and didn’t have glass feet! Soon, I was walking without my cane! (this is huge as I’ve been attached to that dang cane for a while now) All of those little cells from 1,000 healthy people were coursing through my veins waving there little cowboy hats and yellin Yeee Haaaawww! and I’m gonna git you sucka! to all of my Good Cells Gone Bad. And they were winning! I had days where I felt great. I could load and unload the dishwasher and not be bed-bound for 2 days after. This was actually the case before the IVIG.
So- here’s where I’m the lame-o. After going in to the ER in the back of an ambulance, I freaked out that I wouldn’t be able to have another treatment. I scheduled an appointment to visit my rheumatologist at the hospital but failed to schedule myself the next round of IVIG. So, when I meet up with the doc, he tells me no, I can get more treatments-they can pre-medicate to try and prevent the headache of the century and all the vomiting and oh, by the way, when do you go back? I’m sitting in the chair in his office going, uhhhh. Gee, I didn’t schedule an appointment… So he goes down the hall and brings one of the infusion nurses into the room and tells her to squeeze me in. Try as she might, it’s a no can do. Their chairs are booked solid. So, I”m having my next treatment on the 21st, and oh man. I definitely have no stampede of little warrior cells going on now. Probably just one little lone ranger and that’s why I’m having a few good hours here and there. Other than that, I am in full flare mode again. Rash, muscles constricted to the point of PAIN and so many weird little things that go with the package. I had to talk myself down from an anxiety attack this morning. I felt like I was going to stroke-out with the icepick that was pushing through my skull. So, yeah. There’s my illness in a nutshell for the summer. I left a lot out because it’s BORING and blah blah blah.
OK, now for some good stuff. We got a new puppy!!! His name is Brutus and he is the most awesome little dude ever. I say little dude, because if our pets could talk he would totally have a surfer thing going on man, catch a wave dude, awesome, tubular even. And he would talk real s-l-o-w. Yep, that would be Brut Bruteman. That’s what I call him because obviously I have problems. But it suits him. I call our other dog Pete, Pete Peteman so it was a natural progression. I guess. Wanna see some pictures? No? Alrighty then, here we go! (like when someone comes over right after you’ve been on vacation and you make them look at all 350 shots of random buildings and trees in a town they’ve never been and could care less about, fun!!) OK, NOW here we goooo!!!
The Bean decided she wanted to hold the bowl while Brutus ate some. It was hard to say no…
Look at those eyes! He is going to be one spoiled doggy, for sure. It’s hard to deny a face like that.
This is the infamous Pete Peteman. He rocks. And he keeps the deck held down at all times.
Alright, I’m off to bed. Today sucked in terms of pain and icky feeling, I’m hoping tomorrow is a better day.
Until next time
In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).
I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.
I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.
Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.
We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.
I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site
NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).(AD: autoimmune disease)
You can go directly to the survey by clicking on the survey logo below. At the bottom of the page is a link to the Lupus Alliance of America’s website. Thank you.
Until next time,
In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of. From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.
This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.
Lupus Alliance of America
I like this PSA. I think the doc is coolio.
I’ll be back,
There is so much going on with my body I’m just spinning. My muscles from the waist down go into lockdown mode anytime I lay down. My superfun pittingedema (say it fast 3 times-it sounds like a Mexican dish) comes and goes, weeeee! And, the lump that is in the middle of my neck. Oh man. We thought it was the beginning of a goiter. That’s one of the side effects of the new medication that I’m taking. I was sooo worried that I was going to have a Seinfeld size goiter. Did you see that episode where Elaine is supposed to be volunteering, helping this old woman and the woman has a goiter the size of a football and she can’t look at her?? Yep. I feel like it’s that big. Well, I went to see my PCP. He examines me. He feels the lump. He says, “Uh huh. It’s fat.” And I’m like, are you f-ing kidding me? And he says no, I’m not f-ing kidding you. Except we both say the f word. Me because I’m in shock. I CANT have fatneck!!!! And him, I think so as to be cool, and be on my side in case I go batshit and start freaking out. I did a double take in the middle of my ranting when I heard him say the f word. Doctors don’t do that? Anyways, I am positive that my stomach is the size of a Thanksgiving turkey because of . After my legs going tree trunk on me because of edema, I read a ton on it and you can get fluid in your abdominal cavity. The biggest percentage of this happening is from liver failure, which he is testing me for, but occasionally people with lupus can get it. He said it was ‘strange’ for me to put on 50 pounds in 2 and a half months. He is also testing for Cushing’s syndrome. I started reading on that and it sounded too much like me so I stopped for a while. I’ll read more on that later…. Yeah! I’m scared. I feel like I’m just going to keep getting bigger and bigger until I’m floating up to the ceiling…I know I get totally irrational. But my stomach has never, e v e r been this large and I’ve had 2 kids. I look ridiculous. I don’t know what ascites or Cushing’s would mean for me. I hope and pray my liver is ok. I have been on steriods for too damn long with this disease. I don’t know, I’m a wreck. I think ice cream and a nap with help… 🙂
Until next time~Michelle~
~Check out the monthly animation I have on the bottom left side of the page. It took forever to get the shot where you can see the trees through the growth on the branch. When I had to downsize it to fit it on the blog, it makes it harder to see. Trust me, it looks really cool when the shot is larger.~
Whenever I receive an update or an alert from the Arthritis or Lupus foundations, I pass it on here. This evening I was checking my email and saw this from yesterday. I was talking to my husband about what’s going on right now with the Senate yanking the 5.8 billion Prevention and Wellness Fund from it’s bill, and he told me that pulling for money (hoping/praying) to fund arthritis research isn’t what the economic stimulus is all about. Not his exact words, (he’s asleep now and I want to wake him up and ask him what he said again) Basically he’s saying that although it’s a great thing, putting money towards arthritis research isn’t going to positively help the economy short term and that’s what the stimulus package is all about. Long term for sure, but as for helping out now, nuh uh. And I say as an arthritis sufferer, I DON’T CARE. Is that wrong? Should I care that the money that will go towards research isn’t really what the economic stimulus package is really all about? That’s one man’s opinion anyway, what do you think?
From the Arthritis Foundation:
Urge Congress to Fund Arthritis Research and Prevention!
Action is Needed Now
On Tuesday, the Senate passed an $838 billion economic stimulus bill. The House passed its own $819 billion version of the bill on Jan. 28. House and Senate negotiators will meet quickly to resolve differences in the wide-ranging package of spending and tax cuts (HR 1). Congress wants to pass a final bill in both chambers and send it to President Obama before leaving for a scheduled week long recess at the end of the week.
Arthritis Prevention: The Senate removed entirely a $5.8 billion Prevention and Wellness Fund provision from its bill. The House of Representatives included $3 billion in public health funding in its version of the bill. The Arthritis Foundation urges Congress to include this important House provision to fund potential arthritis programs in the stimulus bill. Investing in arthritis prevention at the Centers for Disease Control and Prevention, and in states across America, is not only an investment to help stimulate the economy, but also an investment in a healthier America. Arthritis is the most common cause of disability in the United States. Investing in prevention has a proven return. For every $1 invested in community level prevention, there is a savings of over $5 dollars in public and private health care expenditures within just 5 years. Support for the CDC and evidence based state and private programs to combat arthritis will help reduce disability, pain and health care costs for the millions of Americans with arthritis.
Arthritis Research: As we alerted you last week, the Senate did include $10 billion in funding for the National Institutes of Health. However, no such provision exists in the House bill. The Arthritis Foundation urges Congress to retain this Senate passed critical funding for our nation’s biomedical research enterprise. In 2007, every $1 million that the public invested in NIH generated $2.21 million in new business activity across the nation. Within weeks, funding for high-quality, peer reviewed arthritis research projects could be allocated nationwide, stimulating local economies through salaries and purchase of equipment, laboratory supplies, and vendor services.
Please contact your Members of Congress NOW about arthritis research and prevention funding in the American Recovery and Reinvestment Act of 2009.
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- Support Biomedical Research in the Economic Stimulus Package [Highlight HEALTH] (highlighthealth.com)
Here’s an article on the subject if you’d like to check it out. Until next time
Me and the Bean are hanging out together tonight. (Her nose is drying up thank goodness) and I’ve got the laptop with us. We got online to watch some Sesame Street You Tube clips and I came across a site called HULU. Well, I gotta tell you, I LOVE IT!!! I’m all about free, if you asked someone that knows me that might say I was cheap, but I call it frugal. Anyway, you have to check out this site. Free movies, tv shows, video games and more. I called the Big C to come check it out because they have free episodes of Heroes. Yeeaaahh boeeeeyyy.
I’ll leave you with a clip of Ice Age 3, the first movie which made my husband laugh out loud in the movie theater…louder than anyone else. One of those belly laughs where you might just snort and it’s ok…
Here’s the clip 🙂