Browsed by
Tag: chronic pain blog

I support rare disease day

I support rare disease day

FB-Badge

 

 

Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’.

Even though the word rare means

rare1
re(?)r/
adjective
  1. 1.
    (of an event, situation, or condition) not occurring very often.
    “a rare genetic disorder”
    synonyms: infrequentscarcesparse, few and far between, thin on the ground,like gold dust, as scarce as hen’s teeth;

    we still have a large amount of people with rare diseases. I think it’s like 30 million people in the US have a rare disease and there’s around 7, 000 rare diseases on the list. It makes it hard to get funding for research, hard for people to connect with others with their same condition. I read this somewhere (don’t quote me on this) but I think it said like 95% of rare diseases don’t have one FDA approved treatment for their disease.  That’s just nuts.

    I’m going to link a few places to check out, if you’d like to spread the word, read up, or meet some people like yourself. 🙂

     

    National Organization for Rare Disorders

    Rare Disease Day USA

    World Rare Disease Day, The Global Gene Project

    Offices of Rare Disease Research

    The Voice of Rare Disease Patients in Europe

    Eurordis Rare Diseases Youtube Channel

    I hope you all are having a great day. I’ll be back to blog soon.

    Until next time,

My Big Fat Greek Mom Guilt

My Big Fat Greek Mom Guilt

No, I’m totally not Greek at all. I was trying to be hip. Oh wait, hip’s not hip. Oh what? That movie was like big, like, a decade ago?? Haha, you know as I was writing that I thought, hey this is the funniest stuff! I do try though, don’t I?

Today is our son’s 23rd birthday. He lives a few hours above us, and due to his work schedule and his fiancee’s work/school schedule, plus the fact that they probably don’t wanna hang with the moms and pops when they do finally get some downtime, we don’t get to see them as often as we’d like. He decided he wanted to come down and go camping with his dad. 🙂 Perfect! But-I told everyone I couldn’t go, my body has been weird to me lately and I didn’t think I could make it in the heat and in a tent. I know. I have the most understanding of kids. They really do rock. So that’s not the guilt, here’s the guilt-I kept Bean here with me. She’s not awake yet and Big C and I could come up with nothing that would magically make her feel better about being home with me. She got to stay up late last night and see everyone, so she knows that they’re here. She gets SO excited when her uncle K’s fiancee comes. I say she likes A more that she likes candy and I’m right.

She’s timid when it comes to the outdoors, she has a hard time walking trails and fear leads to meltdowns of epic proportions. I really wanted Big C to have some quality camp time with K and the rest of the gang. If we had her go, Big C would be spending all of his time trying to soothe her so I made the executive decision to keep her with me. Here’s the thing. She has no idea that when she wakes up everyone will not be here and what the heck am I going to tell her. I kept asking C last night, help me think of a good way to tell her. Or just not a really bad way to tell her. I still don’t know. I’m thinking I’m going to tell her that they went camping for one night, and that I really wanted her to come with me to visit Nanna. And just hope she doesn’t hate me forever. (<—- melodramatic haha)

That’s all I’ve got for now. I’m going to leave you with the cutest pic of K when he was the cutest. :0)

 

AAAHHHHH!!! He was so dang cute. Now he’s an adult and he’s still dang cute but I don’t want to pinch his cheeks anymore. They’re all beardy.
Until next time,
Found an old blog…

Found an old blog…

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.

                                                             I used Under The Boab Tree kit by Marta Van Eck Designs
Haha! I laugh each time I see this picture. She brings me so much joy, that kid. Then the gnats or whatever the heck they are were dive bombing me so much I had to come back inside. I think this burst of good weather has brought all the creepy crawlies and fliers out of the woodworks.
So, I started a new blog for posting my scrapbook pages on blogger. It’s prompting me to keep on scrappin. I just love creating something, it’s a good feeling. Anyway, I found a blog that I started right after I got sick . Wow…I know I’m not a writer, like at all, and this sentence proves that but oh my. I’m reading through it and I am SO angry. Which is normal, but it’s just trippy to read. I wrote it never intending to publish it, it’s like a journal. I’m thinking about going through it and removing names and publishing it. Maybe someone who is recently diagnosed can relate to my angry ramblings. I dunno. OK, I really have nothing new to say…Hope whoever’s reading this is having a good day, and that you have sunshine without a million gnats.
Until next time,
Rockin the Steam Mop

Rockin the Steam Mop

It’s after midnight and I really have to get to sleep but I wanted to stop in and write. I always have something to say it seems, even if it’s about nothing. I still have. somethin. 🙂

So today I gave myself to do absolutely nothing until the afternoon rolled around. And I did nothing fabulously if I do say so myself! Then at 2:00 I whipped out the new steam mop and rocked these floors out. Literally. I had the rock music blaring, alternative, and I mopped 2 levels of the house and just swept down the third one. I felt pretty good abou myself. Normally I’d feel pretty bad about everyone else here though. See, when I clean I yell. lol I’d like to be able to say “I can’t help it!” but that would be a lie. We all have control over our emotions, at least to some extent. I get pissy when I clean because I start thinking “Why the hell am I doing all this? Why doesn’t anyone else do it??? Why don’t they care to live in a ‘beginner-level’ hoarders home??? And then the screams come out of me whether I want them to or not.

“Look out! Mom’s cleaning”. They say or “stay away from your mother. she’s cleaning.”  There’s no detailed explanation needed. They know that if they come into the same room with me I’m going to start exasperatingly screaming. ‘Why can’t you put a dish in the dishwasher??? Who has a bunch of cigarette butts out front?? Why can’t anyone sweep a damn floor around here?’ and so on. I really don’t like doing this, it makes me feel like a bad person.  Drumroll please….second time in a month that I haven’t yelled at anyone. Or even just yelled out to the universe, I don’t need anyone home to yell. I have been known to yell whether the family is around to hear me or not. hahaha I told Big C ‘I think I’m finally growing up! It only took 45 years.

Until next time,

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

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,

 

 

Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

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,

2michelle


Survey

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.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


%d bloggers like this: