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AARDA and “My Autoimmune Story”

AARDA and “My Autoimmune Story”

The American Autoimmune Related Disease Association, or AARDA, launched a video series called “My Autoimmune Story” to increase awareness and education of autoimmune disease.  Actress Kelly Martin, who is a spokesperson for AARDA, started off the series with a video of her own. She speaks about losing her sister to lupus and how it has affected her. She also speaks about her role as spokesperson and being dedicated to getting the word out about autoimmune disease.  Here’s her clip. ūüôā


Press Release:

AARDA LAUNCHES “MY AUTOIMMUNE STORY” VIDEO SERIES

Emmy-nominated Actress Kellie Martin Shares Her Story, Calls on Others to Share Theirs, Too

New Survey Reveals Need for Increased Awareness/Education of Autoimmune Disease
DETROIT, March 28, 2013 – The American Autoimmune Related Diseases Association (AARDA) has launched its new “My Autoimmune Story” video series on its YouTube channel with the first story contributed by AARDA’s longtime spokesperson, Emmy-nominated actress Kellie Martin.

Part of AARDA’s 2013 March is National Autoimmune Awareness Month activities, the goal of the new series is to give the 50 million Americans afflicted with autoimmune disease (AD), as well as their families and friends, a national voice and platform to share their personal story.

“Preparing and sharing our personal autoimmune stories will help build critical mass and focus national attention on a major disease category in this country that is often overlooked,” said Martin, who has served as AARDA’s spokesperson since 1999. “Imagine the impact we would have if just one percent of the 50 million Americans suffering from autoimmune disease uploaded a video… that’s 500,000 stories.”

AARDA hopes by collecting and featuring these short videos, it will help educate people about the widespread impact of ADs, the difficulties in getting a diagnosis, the family or genetic component and the financial and emotional burden of living with these chronic illnesses.

AARDA is asking Americans who have been affected by AD – patients, families and friends — to post a video response to Martin’s video, sharing their autoimmune story in a 1-3 minute video vignette (www.youtube.com/aardatube).

 

Wow, if only 1 percent of the 50 million people made a video….think of the impact of that could bring to raising awareness buy paroxetine!!  That’s an incredible amount of people dealing with autoimmune disease in this country. Does watching this make you want to tell your own story? It does for me. Here is the link to go directly to the video * click here.*  If you’re like me and you’ve never posted a video response to a video before, here is a link to a short tutorial that walks you through the steps pretty easily  * click here.*

 

Sondra DuBose’s autoimmune story. Check it out ūüôā

 

I’m totally nervous about doing this but I’m going to do it. Are you ready to tell your story too?

 

 

 

 

 

 

 

 

 

 

 

The Positive Aspects of Chronic Illness… with a side of Poetry

The Positive Aspects of Chronic Illness… with a side of Poetry

Friendship, support, laughter, tears, empathy, encouragement, pumped-up, sometimes chided, love, celebrating, stories, mental hugs, strength, me too!s, vent sessions, pre-approved pity parties. This list could go on and on and you know what? I should make a complete list, as if it could ever be complete, a list of everything that I have gained in my life since I ‘lost’ my health.

I’ve had a few people ask me what, if any, good things have I gotten out of this whole chronic-life experience and I don’t even have to dig around to find one. The people. The women and men that I’ve met since 2006 are amazing. Amazing! The most understanding, giving people I’ve ever had the pleasure to have known. Somewhere in the mix I have become a better person myself. I wasn’t so bad to begin with (tooting own horn here) but I really feel that I have become a better person by going through this whole process.

Tolerance.¬†I have so many friends now who are different than me.¬†¬†We tend to gravitate to people who are ‘like’ us. People that we meet in our lives, say through work or friends, we make friends with the ones who are most like us. Politics, religion, city or country, rock or soul, baseball or football, coke or pepsi. It’s just the way it is. That seems kind of silly right? But it really is how we find our mates in life and the people that we trust the most.¬†¬†When you have a large group of people with the one thing in common that is so extreme; disease and suffering, all of those other factors just drop off. We get to learn about people who are different than ourselves. I’ve learned that I STILL love some people after having to endure the political onslaught that rolled down my newfeed pre-election. HAHAHA oh my. You know who you are ūüôā Just using politics as an example, in the ‘real world’ i.e. pre-sickness, I probably wouldn’t sit down with someone with a zest for politics at the cafeteria at work because, hey, I would have to smile and nod while thinking ‘are you kidding me?’ And you can’t really start a friendship when you don’t have that common interest. Here’s where it gets good. When disease is the common interest, we learn to support, empathize, and build each other up for those really hard times. All of the other stuff falls off to the side and we get to know someone we might not have otherwise. Bonus! How lucky are we??? And what a way to be able to see people as a whole. Tolerance. It’s a good thing!

Third: understanding people better. I think that because of our loss, we gain a better understanding of all people. Our families that have to put up with a non-stop barrage of doctors visits, stuck in the bed times, seeing us at our base; worst and broken, fearing for our lives when we are in the hospital fighting for them. When you first get sick you think it’s all about you. Soon you realize it is far reaching and affects everyone who loves you. I can forgive myself now for being sick as it’s not a punishment. I can forgive my people who at times have been cruel though only through ignorance, and that went away pretty quickly as everyone wanted to learn all about the disease and what they couldn’t grasp on paper they got to witness first hand with someone they love. Love is the word that keeps popping up and man am I loved. And I love so strongly now, how could there have ever been another way??

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OK, I want to share with you someone I met the other day. She has RA (rheumatoid arthritis) and writes the most awesome poems about her experiences. I sent her a message and asked if I could share one here and she said, yes! She is a very cool woman who I’ve no doubt that we will know each other for quite a while. You can just tell when you talk to someone that you will be friends, but instead of shrieking that out like the child that you are (meeeeee) you play it cool and use your big person voice and whatever social skills you have learned thus far. ūüôā Don’t be afraid Donna, I’m not a creeper or a stalker. he he he he

Here’s a poem that I loved, and felt it. And am going to share it with you.

Giggles Over Tears With RA

 

Sometimes I just want to turn RA off for a while,
One little switch could make me smile.
There are other things I need to do,
And other people who need me too.
I’d produce these switches and give them away,
To anyone suffering in any way.
Just turn off all pain and flip happiness on.
It’s my perfect invention that can’t go wrong.

Check out her page on Facebook

just click the link below

Giggles over Tears with RA

 

Needing Some Extra Energy. Please…

Needing Some Extra Energy. Please…

It’s been a crazy past few weeks around here. A week ago today I was in the ER with a heart rate in the 150’s and palpitations. I had been up all night the night before with the most horrible all-over-body squeezing sensation. It felt like I was being constricted by a boa snake. ¬†I had recently started a new medicine that didn’t react well with one that I’ve been on for the past few years. I was told the reaction is rare and there ya go. If it’s rare more than likely I will experience it. I’m tired of being rare, thank you very much body! I stopped the medicine and those awful symptoms are gone.

I’m just hanging out today playing in photoshop and watching the Bean play with her toy kitchen. ūüôā She’s on Spring Break which sounded really exciting to her. When she asked me what it was and I told her it meant no school for a week and a half she said “oh man!!” LOL She does love school. If we can get a day of sunshine coinciding withe some energy, we will go visit the zoo. She’s never been before and it’s been years since I have.

Here’s to sunshiny days!

 

A Guilt Free Day of Art

A Guilt Free Day of Art

I spent the day doing absolutely nothing but scrapbooking. It was SO nice. I turned off the guilt filter. The one that pours into my head every thing that I should be doing or should think about doing. Sometimes I am my own worst enemy. So when I get rid of those negative feelings it’s like ahhhh. I can just sit here and make art and memories and enjoy learning some new things in photoshop. Awesome.¬†

A couple of years ago I joined a digital scrapbooking site and I would get on and do a few pages and then I would shut the computer and not go back for months. It was always in the bad months when pain and immobility were getting to me mentally. I couldn’t scrap, or blog for that matter. I guess this means I’m doing a bit better, huh? That’s always a good thing. I’m going to share with you a quote page I did. It’s not fancy or anything. I like the quote and I kept the page very minimal.¬†

 

 

Paper by Natali Design at Scrapbookgraphics dot com
The fairy is a free brush I found at Obsidian Dawn
I’m wiped out now. It’s 2 am here and I think I’ve scrapped all the my hands can handle. ūüôā I hope you all had a good Monday. If you do any digital scrapbooking or use photoshop, drop me a comment. What’s your favorite site or tool to use? I’m only 1/4 geek, the rest is Irish. hahah
Until next time
A Day Out Amongst the Normals

A Day Out Amongst the Normals

Today was a day for doing. I had a meeting in the early afternoon and just getting ready and getting out there seemed foreign to me. ¬†I wouldn’t say I just realized that I’ve isolated this past year, but doing ‘normal’ things and having them feel so strange is a reminder for me to get out there. I’ve bubbled myself in this house and it feels really good to get out and do anything that’s not illness related.

So I meet my brother in the early afternoon for this appointment with a lawyer. ¬†We’re talking and after we conclude our business she asks “So, which one of you is older?” Holy shit. I just looked across the table at J and said “Uh, he is.” My brother is almost 8 years older than me. Has hunkering down in my house for a year aged me like, a decade?? I already have issues with being 45. I don’t know when it happened. I was 35 and then bam! 45. Time is just flying by. Anyway, we head back towards home to let the dogs out and we have to be at my mom’s house at 6 for dinner. I made her a journal/planner thingy and I wanted to give it to her tonight, but our printer is out of ink. ¬†So I put all the files on a flash drive to print it out at a store. ¬†C says lets stop at the drug store down the street, they have a kiosk there where we can print them out. ¬†We get into the store and I swear, I’m feeling like I’ve never been inside a drug store before. ¬†I started to get that pre-panic attack feeling in my chest. We head into the camera department and find the kiosk and I couldn’t find the slot for the flash drive. I’m looking all over the machine and instead of asking someone for help I’m determined to find the dang slot. I had to ask. Turns out it’s hanging off the machine on the end of a cord. By then the Bean is all over the place. She’s tired from being in the car half the day and her blood sugars are low. She’s trying to climb on the unreasonably tall chair they have in front of the kiosk and simultaneously asking when we’re going to be at Nana’s house for the millionth time. I spend like 5 minutes going through the two thousand files (literally)¬†that is on his flash drive and I’m not seeing the files. I realize that I forgot to save them as jpegs. They’re in psd format and the stupid machine doesn’t recognize them. By now it’s 4:30 and we jam back home so I can process them. Photoshop crashes about 5 times and what would only take a few minutes took a half hour. I’m a total wreck trying to get these files changed while C and Bean are waiting in the car. :/ By this time I don’t want to go back to the drug store. So we stop at a copy place on the way. The guy that works there tells us the machines only recognize pdf’s and power points and I’m thinking ‘whaaaa?’ He says he can put the flash drive in his computer behind the desk and print them out for me. It’s his cashier computer and he turns the screen and starts going through what I recognize as Window’s tutorials. I’m totally having a panic attack now. Bean is floppy, like flinging herself around the store. ¬†When C walks over to peel her off of a woman that’s working there Bean says ‘Grampa’ and the woman stops what she’s doing looks at C and says “NO WAY!!! You’re WAY to young to be a grampa!” After not being recognized as younger than 53 earlier, hearing her say that to C made me want to slap her. ¬†Or slap him for looking so dang young all the time. The clerk behind the counter is rambling something at me about his computer freezing and all I can hear is ‘wah wah wah’ and I feel that sweat drip down my neck and I look at C and he’s looking back at me like ‘I can’t help it!’ and I started giggling. Yes, I did.¬†Inappropriate¬†laughter-I’m always good for that. Bean looks at me and starts laughing because I am and then it’s infectious. I just want the damn print outs and I want out of the store and Bean is belly laughing. It took forever and 27 bucks and half of the papers with the tops cut off of the pictures later and we made it out of the store.

I HAVE to get out more regularly. I felt weird today, like people could tell that I felt uncomfortable. Physically though, I think I’m doing pretty good. I guess I’ll find out tomorrow morning if I overdid it today. Totally off topic but far more interesting-today is David Bowie’s birthday. ¬†And I look way younger than him! If you’ve made it this far through my really boring and panic-filled day you deserve some Bowie. Click here for¬†awesomeness.

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. ūüôā

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,

 

Photoshop Madness

Photoshop Madness

I spent the majority of today fighting with photoshop. SO frustrating!! It was like it sensed that I actually had something to accomplish and it kept crashing or freezing at every turn. I’m finishing up a journal/planner for my mom. It was meant to be a Christmas present but I wasn’t anywhere near finished…so she’s going to get it for her birthday tomorrow. Now all I have to do is get this house whipped in to shape before she gets here tomorrow for dinner. It ain’t happenin tonight…¬†

 

Here’s a couple of pages from the journal. I used a template system by Tangie Baxter called Tangible Plans. LOVE it. I’ve been hooked on Tangie for a few years now, love her work. I’ll post a couple of links below. (this is not a paid post, just want to share her with you!)

This page is really busy but I like the way it turned out. 

Soon-ish….there’s a lot of really cute prompts in the kit.¬†

You can check out her blog here. 

Until next time

 

Hello 2013

Hello 2013

I really have just neglected this blog for the last year. 2012 was challenging to say the least. You’d think that I would come here and let it all out-blog therapy, but each time I sat down to write I just couldn’t. I wouldn’t call it writer’s block because I’m certainly not a writer, it’s more like everything has been so bad I really didn’t want to (couldn’t ?) write about it. I miss it here. I’m going to try and write a little…baby steps.

Instead of going back and talking about a year’s worth of life in this one post I’m just going to post a photo of my grandkids. We took our first neighborhood walk of the year today. As we were rounding the first corner I realized that we need to do this more often. It’s freezing here and the kids are going stir-crazy with this winter break being so long. (3 weeks!!) It was nice to just be outdoors where the girls could run and jump and yell. It made me feel better too. ūüôā

Until next time,

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I asked and He answered

I asked and He answered

Hey all. ¬†It’s been a¬†little¬†while…I’ve been conducting an experiment that sounds ridiculous, and now I’m starting to think it is. ¬†My PC told me a while back when I wanted to go up on my pain meds that he thought that I would be in the same pain without them as I am with them. ¬†I thought he was nuts. So he referred me to a pain clinic and on my first visit after describing all of my pain, the doc told me he thought that I was hypersensitive to the drugs. ¬†Whaaa?? ¬†I have never heard of this, and this guy must be a smooth talker because after a while I was nodding my head and going uh huh, uh huh. ( I just found an article that explains Opioid¬†Hypersensitivity Syndrome or Hyperalgesia here. )

So, I am in the process of dosing down off ALL pain medicines to see if they are causing me pain and making me sick. ¬†Right about now I’m thinking, um no. ¬†I am close to being off of them (this is the last week) and man that was fast. ¬†He had me taking 30% less each week. ¬†I had to put a clonidine patch on to help with the withdrawal. ¬†These are the times that I question what the heck I am doing. I am in pain, and I’m in withdrawal, and I am barely functioning. As my kids say-this sucks.

But, I didn’t get on here to whine. Well, maybe a little… I wanted to write about my experience the other night. ¬†My jaw was killing me. Like a 9 on the pain scale. And my pain scale is completely different now. ¬†What was once a 9 is now like a 4, if that makes any sense. This pain is from a tooth gone completely wrong. A wisdom tooth too. Anyway, I’m holding my jaw, I’m crying and I’m thinking I can’t believe after everything I’ve been through I’m being taken down by a tooth! ¬†So, I’m hurting and there’s no amount of orajel that’s going to give me any relief and I start to pray. ¬†I’m asking God to please help me. ¬†I can’t even see the pain is so sharp. ¬†I have to be able to be there for the Bean. Please help me. And, my pain just diminishes. Just gradually easing up and poof. Gone. ¬†I praised Him and thanked God, thank you, thank you!!

Sometimes I forget to ask God for help. Sometimes I feel selfish when I do. ¬†He is showing me that He does love me.¬†Unconditionally! I just wanted to tell everyone to ask God for help when you need it. ¬†And yes, there are times when we don’t get an answer, at least that’s the way we see it. But I think that is the answer. Some things we have to figure out on our own to learn something. ¬†Make sense? ¬†Maybe ūüôā

Until next time

A nightmare come true-speechless

A nightmare come true-speechless

I’m sick. I know this much. My headache is finally gone, it feels gone. ¬†Is it gone? ¬†I keep rolling over, trying to go back to sleep. ¬†He’s shaking me. Do you know who I am???? Over and over again. ¬†I just pull away. ¬†All I want to do is sleep while I can. ¬†I can’t feel the pain anymore. ¬†You’re not making any sense!!! I can’t understand you!!! He says. ¬†I look at him and I don’t know his name. ¬†I didn’t know I was talking. Wasn’t I just sleeping? Why does he keep waking me up? I realize the importance of his questions. ¬†He is frantic. ¬†His eyes are wide. I love this man, I know this. ¬†But I can not tell him his name.

He is trying to push sweats on over my shorts. ¬†I’m taking you to the emergency room. I’m pushing his hands away. ¬†Do I have clean underwear on? I’m frantic now too. I’m scared. Yet I’m worried about my underwear. I’m trying to talk but no words come out. Just strange sounds. ¬†My daughter comes into the room. ¬†She looks so scared, I feel so bad. ¬†I’m scaring everyone. Stop it! ¬†He asks me, do you know her name. ¬†I know I have to get this right. ¬†It’s important. I say a name. It’s a word!! I said something! But they both look at me. ¬†Sad. ¬†I got the answer wrong. ¬†Now I’m trying to get ready to get in the car. ¬†I’m freezing.

Hey Mom? I turn around real quick and I see my son. ¬†No, I say. ¬†Then I say, I’m ok. ¬†The words came out of my mouth. ¬†We are driving fast, I think I’m crying. ¬†I know that something is really wrong, and I’m scared and I hurt now. ¬†I feel the pain, and the air smells cold. ¬†It’s freezing my nostrils and I can’t stop crying.

We’re here. ¬†I don’t really know what they’re saying. ¬†She says, can you answer me? ¬†I open my mouth and I’m straining but it doesn’t happen. He’s pushing me through the double doors in a hospital wheelchair. ¬†It’s triage. ¬†More questions, more straining. By now, I’m tired. ¬†I just want to go to sleep. ¬†The next thing I remember is the nurse with the mask on. ¬†It covers her mouth but it also has an eye shield. It presses so hard that it pulls her bottom eyelids down and she looks scared. ¬†This is not good. ¬†Needles, IV’s being poked and prodded. ¬†I notice that there is no color. ¬†I’m seeing everything in black and white and I don’t want anymore. ¬†I want to go home. ¬†Doctor comes in and I can’t talk to him either. ¬†This is a freaking nightmare. ¬†He has sad eyes and he is short. ¬†Very small. ¬†He tells me they have to do a scan and then a spinal tap to rule out meningitis. ¬†No, I don’t want this. ¬†He reads my mind and tells me it has to be done. ¬†We have to go to another area to do the scan, and it feels like the room just spins around like in the old TV shows where you pull a book and whoosh. ¬†You’re on the other side. ¬†They have something wrapped around me and tell me don’t move my head, lay still, as they pull me sideways and I slide down onto another table. ¬†I see people on the other side of the glass. ¬†I can’t understand what’s happening. ¬†I can’t hear. ¬†Everyone looks urgent, harried. ¬†I feel like I’m in a bad dream. ¬†I don’t see any color, just black and white. ¬†I’m back with Big C. ¬†I know he’s Big C.

*Then there are two women who are pulling me down a dark hall.  There is a guy who is mocking them.  A Russian lady is talking to me as the other two are climbing under my gurney and wrapping this giant blanket around me like swaddling a baby.  They have a gleam in their eyes.  They are up to no good.  I start fighting them, pulling against the blanket trying to get out.  They will not get me in that room.  We are in some kind of a basement, and what they want to do to me-I know that if they get me in there, I will be dead.  *(I find out later, this part was a hallucination that I had)

I open my eyes and the doctor and the nurse with the uncomfortable mask are prepping me for the spinal tap. ¬†He tells me to grab C’s arm and his and pull. ¬†Harder!!! No push against my arm, harder!!! I am screaming. ¬†I had one years ago, I don’t remember it hurting this bad. The room is all yellow and dark. ¬†I want to know why the lighting has changed after everyone got on masks. ¬†We are quarantined. Everything is so surreal. He is saying they have to be sure. ¬†We have to wait for results. ¬†That’s all I remember. I remember it now like you remember an awful dream. ¬†The one’s that seems so real it gives you a stomach ache.

I woke up in a really large room. ¬†It was bright and sunny and my Big C was there. ¬†I’m like, what happened? ¬†You have meningitis, he tells me. ¬†I’m in a room that is droplet something, can’t remember the term. ¬†But everyone who comes in has to wear a mask and gown. ¬†I’ve got cooties. ¬†At least I don’t have that awful feeling of surrealism spooking me out. ¬†I can talk. ¬†I am scared, but in the oh-my-gawd-how-the-heck-did-this-happen-way. I immediately remember the women, and the Russian, and the guy, I find out that I had a hallucination. ¬†They had actually sent me to get an MRI and I gave the techs some trouble and was “making noises’ and kicking the inside of the machine. ¬†I was so embarrassed!! C said don’t worry about it, you were not you and you didn’t know what the heck was going on. ¬†I got the MRI done a few days later and me and the tech had a laugh over it.

I ended up staying in the hospital for a week. ¬†I had meningoencephalitis, and am just hugely thankful that no major damage was done and that I am here in my bed, typing away. I’m really tired, feels like my ears are plugged and they are ringing at the same time.My brain fog is so thick you could cut it with a knife. ¬†But I am thankful, so very thankful that God doesn’t want me yet. ¬†There still things for me to accomplish here and I’m glad to know it.

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