Tuesday, April 30, 2013

WEGO Health Activist Writers Challenge Day 30 (I did It!) (World Autoimmune Arthritis Day)




Here is today's prompt, "You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?"

My favorite prompts are easy! I loved making lists of people to follow, they are the people I follow on Twitter, Facebook and through their blogs. They all inspire me they are strong, kind and funny! 

These two days were my favorites: Day 14 Share the love
                                                            Day 28  Must follow  


My least favorite? I don't really know what to say here, maybe it was the one I found most difficult.
 
Most difficult: Day 21 Adversity

This entire experience has been a positive one, sometimes my anxiety has been through the roof. There were days I didn't think I would have anything to post. I drove my husband crazy, I'm sure he is glad it's over. Thanks hubby!

It's a good thing I planned ahead and wrote several posts in one day. I had a feeling there would be times I wouldn't have time to write. I'm so glad I did, I would not have finished otherwise. 

I have "met" so many wonderful people through this challenge, I will continue to follow and get to know them long after this challenge ends.

I have learned about a lot of conditions other than mine, I have seen amazing strength and courage. I have been amazed by the talent of the writers.  I have learned to have more fun. Thank you WEGO health for allowing me this opportunity! 



I can't sign off of this challenge without once again reminding you to sign up for World Autoimmune Arthritis Day.  Registration is free, you can buy a pin to show your support. The event is on May 20th, 2013 so you still have time to spread the word as well. 
If you would like to read more about it, check my previous posts or go to the website


Here is a link to a wonderful article written by a fellow activist, I wanted to share. I think it is amazing! 

Here's Your Gold Watch Rheutired



Thanks for all of your support!










Monday, April 29, 2013

WEGO Health Writers Activist Challenge Day 29 (Congratulations) (World Autoimmune Arthritis Day)




Today's prompt is, "We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!" Seriously? What does signpost mean? I'm not comfortable talking about how "awesome" I am. I feel like I would turn into one of those people that take self pictures every five seconds and post them on twitter. Since there's only a day left, after this I can't really skip a prompt so I asked my hubby to help me ha! Did I just undercut or signpost? Maybe, if I knew what that meant I just might have. Okay here are the answers.

I'm compassionate

I'm honest

I'm a good wife, mom and nana.


With only one day to go, I would like to take a moment to talk about World Autoimmune Arthritis Day, it is coming fast! Please read my previous posts for information on registration (it's free) don't forget to order your WAAD pin when you're there. Please pass on the information to everyone you know. Thanks!

 Here are the links:

















Sunday, April 28, 2013

WEGO Health Activist Writers Challenge Day 28 (Must Follow)








Day 28 (April 28) – Must Follow!
"Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages."

Since last time I created a twitter list, this time I made a Facebook list. Click on the blog roll link to see my must follow blogs. There are so many great pages on Facebook, I know I missed a ton, so thank you to you all, as soon as I find the links I will add then to my resource link page.

1.  International Autoimmune Arthritis Movement
2.  RA Warrior
3.  RA Chicks
4.  American Autoimmune Related Diseases Association
5.  But You Don't Look Sick
6.  CHRONICLYsILLY
7.  Lupus and Me
8.  Making Autoimmune Connections
9.  Sjogren's Syndrome Foundation
10. Lupus Foundation of America






Saturday, April 27, 2013

WEGO Health Activist Writers Challenge Day 27 (Titles)





This is today's prompt "If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles."

The first one is easy, it would be the same as my blog title

1. Life with RA is a Pain
2. Life with Autoimmune Arthritis is a Pain
3. Living in a fog
4. You call me stubborn, I call me alive 
5. Autoimmune Arthritis out loud

A few more came to mind, I can't post them though. Some things are better kept to myself! I will however add my hubby's suggestion, RA sucks. I have to agree it does, maybe his is the best, let's not tell him I said that though!









Friday, April 26, 2013

WEGO Health Activist Writers Challenge Day 26 (Pain Free Pass, Birthday, AARP!)

 

"What’s a day that you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?"

It's funny I should get this topic today of all days, today is my birthday. It's a number I would rather not speak or hear out loud. When I was at the Rheumatologist the nurse was talking about this number to me, since she will reach it soon. She took my blood pressure, it was sky high! As soon as the conversation went back to normal, it went down! This last month I have been getting flooded with AARP emails, and snail mail. Every site I visit, there is an ad for it, coincidence? I don't think so! They are trying to make me believe I have suddenly entered a club I'm not ready to belong to, I keep waiting for my entire head of hair to turn gray! It feels like I was in high school yesterday, how did this happen? I still go to rock concerts and listen to Kid Rock! I'm not AARP material! 

I think I'm off topic, pain free pass was it? I would like to use it today! I would use it any day. I can't remember the last time I was truly without any pain. Pain is part of my life like going to work is part of yours. I would like to have used it on my wedding day, on every event my kids were involved in, for all of my grandkids events, I can't answer how being pain or worry free would impact that day mainly because I can't remember living without either.



Thursday, April 25, 2013

Liebster Number's 2 and 3.


First, I would like to thank Ginger from The Wild and Wonderful World of Gingersnaps for nominating me, this is my second Liebster award. I'm honored!

She nominated me a little while back, I'm finally getting around to posting it. Sorry it took so long!

While I was in the middle of writing this I was nominated for a third award, so I'm going to do them both at the same time. I won't get them done till 2020 otherwise :) 


Thank you to Jaimie from The Migraine Diva for this one! Please take the time to take a look at both of these wonderful women's sites!

I'm nominating both of you ladies for the Versatile award, you can read my post here on how it works: http://www.lifewithraisapain.com/2013/03/versatile-blogger-award.html
 
This is what is how the Liebster works, and the list of questions and my answers:

1. Each blogger should post 11 random facts about themselves.
2. Answer the questions the blogger has sent you then create 11 new questions for the bloggers you pass the award to.
3. Choose 11 new bloggers (with less than 200 followers) to pass the award to and link them in your post. (I chose 300, 200 is hard to find.)
4. Go back to their page and tell them about the award.
5. Don't send it back to the person who sent it to you.

Questions from Ginger
1. Where were you born? Scotland

2. What is your most favorite thing from childhood? A bracelet engraved with my name on it.it was given to me when I was a baby.

3. Why did you start blogging and why do you blog now? Is it the same reason you started blogging? I started blogging to raise awareness of RA, Sjogren's Raynauds, Lupus and all the other Autoimmune Arthritis/Diseases. To provide and get support. That's still my main goal.

4. What is your favorite silly made up word? I can't type that here this is a family friendly blog. The initials go like this FURA 

5. Who is your favorite leading man/woman? There are so many, I love Johnny Depp, Christopher Walken, Sandra Bullock, Mellisa Mcarthy Ian Mckellan, Morgan Freeman, Samuel L Jackson, Christopher Lee, Hugh Laurie, Joseph Gordon Levitt, Clint Eastwood, Liev Schreiber.
 
6. Who is your favorite heroine /hero from any book and why? It's hard to answer this one, reading mostly people's true illness stories. They are my heroes/heroines.

7. Have you gotten to know any of your fellow bloggers personally? yes, a few

8.  What is your favorite holiday? is summer a holiday? 

9.  Who is your role model and why? everyone living in pain day to day

10. What did you want to be when you grew up? Are you there yet, and are you what you wanted to be as a child? several things, a social worker, a dancer, I got sidelined due to illness

11. What is your favorite quote? "Be kinder than necessary for everyone you meet is fighting some kind of battle"

Questions from Jaimie
1.  What are you doing when you're the happiest? Enjoying time with my family in the summer, somewhere warm.

2.  Where is the one place that you're dying to go? Vegas! no really back to Scotland, back to British Columbia, to a NASCAR race, sorry only one!

3.  What got you to start blogging? Health Activists like you inspired me to start

4.  What does your blog name mean? Life with RA is a pain means, RA is a pain in the butt, it causes pain. Then I was diagnosed with Lupus, I had already created this site etc.

5.  What's the perfect Saturday to you? sitting at the beach,river, ocean, waterfall, reading, relaxing, walking, talking, campfires, grandkids, can I go now? :)

6.  What is your favorite book and why? I can't pick one. I read a lot of health related books, dancing at the river's edge is a great one!

7.  What do you want your kids (present/future) to remember about you? I'm going to cry now! I want them to remember I always loved them and I was always there, will always be there.

8.  Who is your favorite person in the world and why? My husband, he is my best friend! How sappy is that! He has helped me through the worst days, put up with all of my moods, he is always there.

9.  What is the best memory you have of your own parents (or whoever raised you)? They were always very affectionate with each other.

10.  What's something that you never get tired of? Praying for a pain free day
11.  What's your weirdest habit? I'm a "neat freak"


11 random things about me, this is hard! I feel like all I do is talk about myself on here. What don't you know about me? Especially after 22 questions lol

1.  I can't stand the feeling of lint or cotton balls yuck!
2.  I love Mexican food
3.  My favorite color is blue
4.  If I had a choice of anything to drink, I would choose water
5.  I don't eat breakfast (I know bad)
6.  I love Glee
7.  I had a twitter account years ago, I deleted it because I thought all people did is say " I just went    for coffee, I just got dressed, I just got up."
8.  When I was 14 my boyfriend was 19, that went over well, NOT!
9.  I only eat one brand of popcorn, that's it no other kind
10. When I was little, I had a crush on Donny Osmond and my parents painted my bedroom dark purple
11. I can't stand being late, it drives me crazy!

Now on to the nominees! I'm going to nominate 11, that's about all the energy I have!
Here they are!

Now my questions to you, I'm giving you the same ones I used the last time. Here they are:
1. Why did you create a blog?

 

2.  On average how much time a week do you spend blogging or doing blog related   activities?



3. What is your favorite season, and why?



4. What do you like most about yourself?



5. Who is the most important person in your life?.



6. What type of music do you listen to most?



7. What is your most prized possession? 



8. What is the one thing that gets on your nerves? 



9. What do you love most about your followers?



10. Have you become close friends with any of your followers?



11. If you could change one thing about yourself, what would it be?


WEGO Health Writers Activist Writers Challenge Day 25 (Learning)




Share something you learned from another Health Activist (that everyone should know!).


The number one things I learned from other Health Activists is to stand up for myself and let my voice be heard. Who is better qualified than me to be my own advocate. When I started out I didn't know what the term meant, wait! I knew loosely what it meant, I didn't know I was considered one myself.  

Here is the definition from  WEGO's site

"What is a Health Activist?
Health Activists are leaders who work daily to improve the way people talk and think about
health. If you are sharing your health story and helping others live better lives you may already be a Health Activist. Health Actvists are passionate about raising awareness for health causes, dedicated to finding the best information about health conditions, and relentless in their
commitment to help others. They are also adept at using every tool possible to reach their communities, especially through social media."
I know a lot of people who fit this description perfectly, they are my heroes! I hope that by
sharing my story, it helps you as much as others sharing have helped me. 
I have learned about others health conditions, what they do to get through each day. Reading other people's blogs has taught me to have more fun! I have laughed more through this challenge, than I have in months. I spend a lot of time editing my thoughts to keep my page family friendly, it feels like I suck the life and fun out of some of it. Maybe I should be more like some of my fellow bloggers and write exactly what I think. Their pages are so much fun! (I said maybe!) Don't unfollow me!



Wednesday, April 24, 2013

World Autoimmune Arthritis Day Registration Update!

I wanted to update you on WAAD if you remember my post from a few days ago, WAAD or World Autoimmune Arthritis Day is an online 47 hour virtual event hosted by IAAM.

Registration is now open so head on over HERE and get yourself registered so you can be a part of this awesome event!

You can also type in http://www.WAAD13.com it will also take you to the registration page.

Go to Facebook to share the news with all your friends, they won't want to miss it.





Here is the link to my previous post for those of you that just started following me:

http://www.lifewithraisapain.com/2013/04/why-i-volunteer-for-iaam.html



WEGO Health Activist Writers Challenge Day 24. (Wordless Wednesday, Pin it)




Today, we were asked to create a Pinterest board, pin 3 health related things and share it.
 


Tuesday, April 23, 2013

WEGO Health Activist Writers Challenge Day 23 (Technology, no song pop!)





The prompt for today is, "Write about how your life would change if there was no social media. "

This one isn't too hard for me. When I was diagnosed the internet wasn't an option. There was no such thing as Twitter, Facebook or Blogging, shocking I know! Never in my wildest imagination could I have thought within 10 years of my diagnosis their would be an explosion of technology. In the beginning after the right combinations of meds, I managed to do okay. I could socialize with friends, lead a fairly normal life. 

These past 10 plus years have been a different story, my disease has gotten progressively worse. I rarely socialize outside of the home, my connection to the outside world for the most part is through my computer. I would be lost without it, I can connect with others who understand what I'm going through to provide and get support. I can go almost anywhere to play games as a distraction when the pain is bad. Song pop anyone? There are millions of websites to research my conditions,  I spend time writing my blog. I am thankful I have the opportunity to connect to people in this way, without it I would be lost. To all my readers, followers. non followers, followers to be, stalkers :) Thank you!







Monday, April 22, 2013

WEGO Health Activist Writers Challenge Day 22 (Day to Day)



Today we are writing about the 10 things we can't live without, need and love most, this is a quickie I'm on my way to see the Rheumie. Maybe he should have been on the list! Let's see how my appointment goes first :)

1.  My Husband
2.  My kids and their fiancess, my grandkids, my family 
3.  My Dog
4.  My friends
5.  My bed
6.  My medication
7.  Water
8.  My computer
9.  Music
10. My favorite snacks

Sunday, April 21, 2013

WEGO Health Activist Writers Challenge Day 21 (Adversity,bloomin flowers?)








This is the prompt for today “The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan True or false? When do you bloom best"

I will admit these last few prompts have been difficult, anxiety attack anyone? Am I a flower? Do I bloom? I think of a flower as being something pretty and delicate. I don't think that applies to me!  

I had to ignore my brain and look at the word adversity and go from there, if I hadn't this post would be blank! So let's think of what the "Adversity" caused by RA, Lupus, Sjogren's and Raynauds has done. It has made me stronger emotionally, I have more patience, I am calmer, (unless I'm writing posts like these.) I deal with most situations head on. I have learned how to stand up for myself and say no. 

When do I bloom best? I would say when I'm happy, when my pain is low, I'm not in a complete flare. Maybe I have slept the night before, there are no major stresses going on that day. Winter is over, I can take a walk, enjoy the warm weather. Everyone around me is calm, happy and healthy.









Saturday, April 20, 2013

WEGO Health Activist Writers Challenge Day 20 (Burnout)



Today's question is, "what gets you out of the pit of despair when nothing is going your way"? I usually crawl under the covers and hope the next day is better! Okay maybe I'm exaggerating a little, that's usually a last resort. Things that help me are playing with my dog, going for a walk, providing it's not freezing and we're not in a blizzard. Watching movies with my hubby, spending time with family and my grandchildren. 

My grandchildren are the best medicine on any given day. I have also found writing my blog and reading your blogs brings me comfort. Other things I do volunteer with IAAM, read a book, listen to music, clean the house anything to distract myself and change my mood. Some days are better than others when you deal with a Chronic Illness, I feel overwhelmed at times. 

I will end this post with the words from an 80's song. "If you don't like what you got why don't you change it, if your world is screwed up rearrange it."














Friday, April 19, 2013

Why I volunteer for IAAM



I just graduated from training to be a volunteer for IAAM. What? You have never heard of them? Well let me share some of the things I know with you, and why I joined.

IAAM is short for International Autoimmune Arthritis Movement. First of all, the name is cool! A movement, that has to be a good thing right!

The organization is run online 24/7 by volunteers from our computers, we all have Autoimmune Arthritis. Here is another cool fact, it was started in the founder's living room! She couldn't find the answers or support she needed after her diagnosis, so she created her own organization.


Why did I choose to volunteer with IAAM? The first reason was to raise awareness, I read Tiffany's Story, Tiffany Westrich is the founder of IAAM. I related to her story and after reading more information on the website and emailing Tiffany I signed up. This organization feels like a family, we all have a chronic illness and are working together for the same cause. Another reason, we work from our computers, that makes it so much easier! I am so thankful that I did, in the short time I have been a part of this organization I have seen wonderful things. I feel like my illness is not taking over me, I am taking over my illness.

We work with organizations from all over the world, in fact on May 20th we are hosting World Autoimmune Arthritis Day.  What's that you ask? it's an online virtual event spanning 47 hours. When you login you will see doctors, patients, experts of all kinds that you can chat live with, there will be presentations and resources to help you find support. You can take a survey, there will be all kinds of fun ways to participate, via the official WAAD page, Facebook or Twitter. I hope you check it out!



If you are reading this and are interested in blogging about it, participating as a nonprofit, speaker, or vendor please contact info@IAAMovement.org 





WEGO Health Activist Writers Challenge Day 19 (Vintage Photo)







Today we are to post a vintage photo of ourselves and where we were in terms of our health condition.

I added two pictures here. Vintage being my old school photo I think I was 11, this was before my diagnosis.  I also added my wedding photo we will be married 13 years next month. I was sick that day, in a flare and having an anxiety attack.  The temperature was about 106 I was wearing a heavy suit type dress. The entire day is a blur,  somehow we ended up married. I was told I almost fainted, I would suggest to anyone who is ill and getting married in a different city, check the weather :)









Thursday, April 18, 2013

WEGO Health Activist Writers Challenge Day 18 (I take it back)







Today's topic is to "Write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go."


"Forgive myself and let it go." These are words that don't come easy to me. I live with anxiety, I dwell on things, I spend too much time thinking about what I should, could or didn't do. I'm working on that a little bit everyday.

There have been times during this challenge to write about the past or stay current. I have chosen to stay current or focus on the future, I choose not to look back. There are a million things I would have done differently, said or not said, it won't change anything. I wish it could, I have learned living in the past is not healthy for me. Do I forgive myself for lashing out at times? I feel horrible when I do that, I try my best not to do it, sometimes the emotions of these diseases take over.

These illnesses can change who you are, being in pain day after day, getting no sleep doesn't always leave you chipper. I get up everyday with the intention of doing the best I can, sometimes along the way things change. Some days are better than others, I might laugh one minute and cry the next. I might be angry that I can't be somewhere I want to be, or contribute more to the household. Maybe I'm angry at the disease for invading my body, I'm not angry at you! Am I sorry and need to be forgiven?  I don't know, you will have to ask the people around me who deal with me everyday.












Tuesday, April 16, 2013

WEGO Health Activist Writers Challenge Day 16 (Misinformation)







Let's see if you can pick out the truth and the lies in the following statements. The answers are below.

1. Rheumatoid Arthritis is an old people's disease and caused by joint wear.
2. Rheumatoid Arthritis and Lupus can cause death.
3. You can get Rheumatoid Arthritis,  Lupus, Sjogren's, Raynauds from me.
4. You can look fine on the outside and be a mess on the inside.








1. Rheumatoid Arthritis is an Autoimmune disease that can happen to anyone at any age. Symptoms include, fever, flu like symptoms, you are at a higher risk of a heart attack. All of your organs are involved.

2.  You can die from any number of reasons such as, medication complications, heart attacks, infections.

3. You can't catch Autoimmune Arthritis from someone who has it, it is thought genetic or environmental factors are involved.

4. "I look fine, so I must be fine." This is the biggest lie of them all. When I leave the house, I spend quite a bit of time making my self "presentable." The days I'm at home, (most days) I will be in my pajamas, or my "comfie clothes." Although on the outside we may look fine, on the inside our organs are being damaged from the disease, the inflammation, the medication, stress, the list goes on.











Monday, April 15, 2013

WEGO Health Writers Activist Challenge Day 15 (Sharing)



Today we are to pick another persons blog, select a post that inspired us, leave them a comment, write that as our post for today and link back to it. I leave comments all over the place, I can't keep track!  How am I supposed to pick one? This Writers Challenge has been amazing so far and I have "met" a lot of wonderful new people. The talent level, can I just say wow! I spent 20 minutes having a panic attack over this before my husband told me to calm down and explain I can't pick one! That said, click on the link to my blog roll and you can read the posts from a lot of wonderful people! I hope you have as much fun reading them as I do.








Sunday, April 14, 2013

WEGO Health Writers Activist Challenge Day 14 (Favorite Health Activists, Thank you, thank you very much!)




Today is a day to thank our favorite health activists for everything they do. I think every activist should be thanked, it's hard enough living with an illness, add to it fighting for acceptance and awareness. 

I stayed with Twitter for this one. Why? I'm in a flare, a major snowstorm is hitting us again. My fingers are swollen and sore, it hurts to type. I'm exhausted, I'm not sleeping, I have been having random nosebleeds. (Calling my Rheumie on Monday.) I'm trying to complete this task in the easiest way possible, I could stop but I don't like to quit :)

Here is my list, I would name every activist if I could, these are just a few that stand out to me, each one of them have brought a smile to my face, I admire every one of them.