Friday, May 31, 2013

Day Trip and a Thank You!

I want to start off by saying Thank You! thank you for reading my blog, thank you for your comments and for sharing my posts. thank you for your kindness during the hard times I have encountered recently. 

I need to give an extra thanks to Katie from Dysfunction Junction, she has gone out of her way to help me and support me. She is an amazing person.

Next, Aisha from The Whimsical Peacock, her humor, spirit and kindness have helped me out of some of the worst funks.

Jessica of The Wondering Brain, again her offer of support and kindness have helped me through this time.

Chris from Life Your Way, keeps me laughing every day when all I want to do is cry. She is the funniest person I "know."

Elizabeth from Stones in Harmony, has been there to support me whenever I needed it even though she has been dealing with her own difficulties. She is an amazing woman, who lives with Autoimmune Arthritis herself and manages to designs beautiful jewelry. She designed these for me. These pictures are courtesy of Elizabeth :)







All of the members of  IAAM, they are my second family, an absolute amazingingly strong inspiring group of people.

I have more people to thank, my brain is foggy right now forgive me if I haven't named you but I haven't forgotten you and I thank you for your kindness. People say the world has gone to hell and everyone in it is only out for themselves. After "meeting" all of you I can say that's not true.

On to the Day trip! I found these pictures on my camera yesterday. One of my favorite things to do is to go on a day trip. I love to discover new things along the way. Here are a few from our last adventure. Have a great weekend!













Elephant was made out of old lawnmower blades




Wednesday, May 29, 2013

Memorial Day

I took a break from everything going on in my life to spend Memorial Day with family members. The photos are below.  First I want to share these photos with you. The pictures of the bricks are memorials to my husband's family. The other picture is to honor survivors of a helicopter crash. I attached the image that tells the story. To all who served and continue to serve, thank you for your service, your sacrifice and to the families at home thank you as well. You are all heroes in my book.











 Somehow I ended up in the background by the car, I think I had to go get something.



The Grandson who hates pictures. 



The Grandson who loves pictures. 



The shy Grandson. 



Shock at Papa (Grandpa) riding their bike. 


Nana you have to ride a bike! Seriously? I haven't been on a bike since I was young and certainly not since knee surgery. Their responses? "Nana, we will teach you. Watch you just pedal one side then the other. Do you need training wheels? Papa hold onto the back of her!" They raised the seat, lowered the seat. I'm sure it was quite a sight for all of their neighbors, I'm just glad this happened at their house not mine! :)

I hope all of you had a safe, happy and healthy holiday weekend.

Monday, May 20, 2013

World Autoimmune Arthritis Day Chat Schedule May 20th,2013

Here is today's chat schedule, we are still having a couple of minor glitches. Just like Autoimmune Arthrtis, things don't always go like you plan them due to unpredictability. The show continues to go on! I hope you join us on our Facebook page. We are having a wonderful time!


Friday, May 17, 2013

International Autoimmune Arthritis Movement Ace's Virtual Art Gallery Opening

UPDATE May 30, 2013

The Gallery is scheduled to open for two weeks starting June 1, 2013.  I hope you check it out and read the patient stories. thanks again for your support!

During World Autoimmune Arthritis Day the International Autoimmune Arthritis Movement or IAAM will be the host of one of the many virtual booths called "IAAM Ace's," which stands for Artist Collaborative Exchange. 

The gallery opens May 19th and is open until May 31st. The artwork is made by patients or in honor of a patient. All of the donations will go to raising awareness and education materials for Autoimmune Arthritis.

I hope you will take the time to visit the gallery, look at the amazing art, there are patient stories to read, and also information on Autoimmune Arthritis.

Thursday, May 16, 2013

Patients for a Moment (PFAM) May Blog Carnival Post (How do you Recharge)

Good question! I stared blankly at my screen for hours trying to come up with an answer. The first thing that popped into my head  was sleep, but I'm not "recharged" when I wake up. A typical night for me especially these past few months, is to toss and turn until 4 am. If I'm lucky I might fall asleep, be awakened by a nightmare, fall asleep again, wake up every hour after that. Eventually I give up and after fighting the stiffness in my joints I get out of bed. The rest of the day I have a massive headache, (sometimes Migraine) aching, stabbing, annoying all over pain due to Autoimmune Arthritis/Disease. 

Let's talk about other options like vacations, by the time I pack to go on vacation,  make the trip, take in any sites, travel home and unpack I'm exhausted. I love going on vacation don't get me wrong I'm just not recharged. Naps? I can't nap, I can't sleep at all. Meditation, I don't have the patience or ability to concentrate for that amount of time. I'm too stressed and anxious right now for any of that. Going to a spa? I can't handle being touched with the amount of pain I'm in, again just going is exhausting. I'm supposed to go get my hair cut next week that is normally relaxing for most people for me not so much. My head hurts the whole time, just thinking about it makes me want to cancel. Wow this is a negative sounding post. Let me try again.

I do enjoy going on day trips, driving around discovering places you haven't seen. Spending the day at a park, going camping is very relaxing for me, yes exhausting but also relaxing. Sitting around a campfire enjoying peace and quiet for me there is nothing better. 

The number one thing that "recharges" me and exhausts me at the same time is being with my grandchildren, they have so much life and energy it's contagious. How can you not feel great and have fun with them? Sorry this post is all over the place, like I said with recent events my mind is a bit more "foggy" than normal.

I'm not sure anything can "recharge" me at the moment, I look forward to reading the other entries to get some ideas. I would love some ideas from all of you reading this as well, I'm at a loss almost.

World Autoimmune Arthritis Day 2013 (Live Chat Host Updates, with Times)

Here are the times for the chat hosts, remember to register in advance to get a copy of the schedule. It's almost time!

I will probably be adding more times to this post so check back, you will get times in your email as well as soon as the schedule goes out. 

UPDATE!!!!!!!!!!! May 19th, 2013

Due to a few technical difficulties, WAAD has temporarily been moved to the official Facebook site. The site is being worked on as we speak, the chat hosts will be fielding questions there.  You can post your questions in advance and they will answer them when they login. Thank you for your patience! 






Wednesday, May 15, 2013

WAAD13, sorry I forgot one! (The Experts)

Photo: ANNOUNCING the Official World Autoimmune Arthritis Day 2013 "Ask the Experts" Panel!

Register for WAAD at www.WAAD13.com (FREE) and upon confirmation you will receive an email with instructions for submitting questions for the Panel which may be answered LIVE during the Virtual Convention!

WAAD13 will also feature Live Chat Sessions and a Lounge (available in over a dozen languages), over THIRTY Nonprofit Virtual Booths you can visit and learn more about, a Day in the Life with Autoimmune Arthritis Booth AND corresponding App which teaches supporters and the public about Autoimmune Arthritis and much, much more.

Do NOT miss this historic event! Virtual doors open online at 6am ET/USA May 19th and close at 5am ET/USA May 21st...47 straight hours of awareness and education at your fingertips!

WAAD13 is established and Hosted by IAAM.

World Autoimmune Arthritis Day 2013 Party Invite. (Sunday May 19th, 2013, 5pm CDT/USA)


I may not be in much of a "party" mood however I do know my parents would want me to continue to fight for myself and for all of the people dealing with Autoimmune Arthritis. I'm asking you to join me during #WAAD13 for a Virtual party on May 19th, 2013. If you haven't already please register it is free, we ask that you do so to keep out spammers and people who may act in a disruptive way.

The event runs from May 19th 6am EDT and ends May 21 5am EDT/USA.
 We will meet in the lounge. When you login you will be given a little tour to show you how to find things.

Right now my plan is to be there Sunday at 5 pm CDT/USA, things are a bit unpredictable for me at the moment, if that should change I will make a note on here. I hope to see you there.


UPDATE!!!!!!!!!!!  

Depending on the technical issues this time may be changed to Monday night. Check back for updates. Thanks!

 We will be hosting live chats on Facebook at different times throughout the day. Please login there to check out all of our guests. Thank you.


 It is going to be a wonderful event there are over 30 nonprofits signed on. There is a "Day in the life" virtual booth to show what it is like to live day to day with Autoimmune Arthritis. Live presentations throughout the event, resources, and a chance to ask the experts. 

Here is a list of nonprofits for you:
American Autoimmune Related Disease Association 
Arthritis Care - UK

Arthritis Foundation of America

Arthritis Foundation of Crete
Arthritis Foundation of South Africa
Arthritis New Zealand
Canadian Spondylitis Association
Coalition of Ankylosing Spondylitis Patients
Coordinadora Espanola de Asociaciones De Espondilitis (CEADE)
European League Against Rheumatism (EULAR)
Helgi Olafson Foundation

International Autoimmune Arthritis Movement
International Still's Disease Foundation
Lliga Reumatologica Catalana
Lupus Association New South Wales
Lupus Europe
Lupus Foundation-Michigan
Lupus Trust of New Zealand
Lupus UK
Lupus Foundation of Ontario
National Psoriasis Foundation
National Rheumatoid Arthritis Society
National Ankylosing Spondylitis Society
Power of Pain Foundation
Rest Ministries, Inc
Rhumatologic League Galega
Sjogren’s Society of Canada
Sjogren's Syndrome Foundation
Spondylitis Association of America
The Arthritis Society - Canada
The Lupus Support Network
The US Pain Foundation

Research 
Arthritis National Research Foundation

Arthritis Research Centre of Canada

Government Program Associated
  National Institute of Arthritis and Muskuloskeletal and Skin Diseases (United States) 
Patient Advocate Foundation (United States)



Here are your chat hosts, they will chat live for 30 minutes register in advance so you have the chat schedule.
 

 
 

WAAD13 Systemically Connected Blog Carnival Post 2. ("But it's just Arthritis")




I'm a day past the deadline for this, with everything going on I pulled bits and pieces from other posts I have written.

People either out of their own ignorance, or maybe they just don't care make comments like "oh it's just arthritis" "it could be worse, you could have a fatal disease." Really? Living in pain everyday barely able to function, so tired you can't think, you can't sleep due to the pain. You lose the ability to concentrate, people begin to think you are crazy, maybe it's all in your head! Taking a shower takes all the strength you might have had.

Let's not forget heart involvement, kidney involvement, eye damage, joints replacements, drugs used for Chemotherapy. Autoimmune Arthritis can be fatal due to all of the organ involvement or due to medication side effects or risk of infection.
  
Family and friends, don't understand, they hear the word "Arthritis" it's suddenly not a big deal.  I have heard over and over "I have a bit of "Arthritis" in my finger, knee, etc. "I know so and so he takes "Tylenol Arthritis" he is feeling great! "Why aren't you running around now that you're on Humira? Thanks to the commercials! I can barely get out of bed each day I can't run, swim, garden, play any sport, dance, play golf I have been on a 25 year road to finding the right medication for me. Every patient is different and requires a specific treatment what works for one person may not work for me.

 "Just Arthritis? No. you don't have the arthritis I have. You likely have Osteoarthritis which affects the joints primarily. This is the one they call the old people's disease. The one you can "just take an aspirin" for. It is a painful disease and I'm sorry you have to deal with it, it is not the same as what I have.

It is my hope we will get treated and recognized as individuals. If we can't find a cure we should be able to find a way to better educate people and not feel so alone. My dream would be that this disease gets the recognition that is overdue and is deserved and will finally not be known as "just arthritis"


Tuesday, May 14, 2013

Loss

I lost my father just over a week ago. My mind is still in a confused state, I feel like I'm walking around in a fog. I haven't been able to concentrate, my emotions are all over the place since last Saturday. My sister called to tell me my dad had passed, it doesn't seem real. I live a thousand miles away from "home" which complicates things even more.

We lost mom just 7 months ago, I keep looking for answers that don't come, questioning every choice I made/make. I don't even know why I'm writing this, I've been told it's supposed to help but I can't focus. I guess I am explaining why I have been absent. I'm not sure how often I will post right now, or if anything will make sense.

I will try to post more about WAAD in the coming days for those of you who have shown interest. Thank you for your patience, messages, prayers and sticking with me.




Friday, May 3, 2013

Pictures from my Birthday

I want to thank you for your support during the 30 day WEGO health challenge, all your comments, shares, kept me going on the days I almost gave up. Thank you for helping me get the information out about WAAD day as well, it is going to be a great event I know I'm excited to be a part of it!

I am a little behind on my everyday life posts so here are pictures from my number not to be mentioned birthday. You can see by the pictures how much my family loves me! :)
Have a great weekend!


Grandkids



Hubby and Me



Us with our Grandkids

Huge Sundae



Hubby eating my Birthday Sundae, too much for me
Daughter in Law to be
                                                 
                                                                                       My son
                                                     I have been finding notes like these since my Birthday!     
                                                                              
                                                                    My Grandkids Love me!