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Big ol’ recap. LONG.

Big ol’ recap. LONG.

Hello internet! It’s been quite a while. So many things have happened since last I talked to you and I guess that’s a good thing. How sad would I be if 1 year, 2 years later nothing had changed??

To back up, we moved east at the end of 2013. I had to scroll back in my posts to see and yeah, I really haven’t blogged at all since the move.

In December of 2012, we lost my father and big C’s mother in the same week, at opposite ends of the country. Both deaths caught us completely off guard, they were sudden. So much loss and pain. As I was dealing with my father’s death,  C was on a plane to be with his siblings with his mother’s passing. It was so hard to go through our grief separately. In the past we’d said over and over, yeah we’ll end up moving there someday, but it was a vague ‘someday’.  We missed being here for his mom. Life hit us both so hard that we started thinking differently. What do we need to do for us now? Where are we supposed to be right now? The answer was to move near his father to be with him for his last years here. (Big C joined the Navy after high school and landed in the PNW where he started his own family. So, he never got to have an adult relationship with his dad.) We talked a lot about moving… it was going to be hard. Both he and I have 3 grown kids that live in the PNW and making a conscious choice to move across the country, away from them felt so wrong. Our youngest was just barely 18. But after our parents died we knew it was time to spend some time with Senior. And omg. I fell in love with this man.

For the first 6 months we lived with him. C, Bean and I took over his second floor. Our oldest daughter and my granddaughter came as well. They stayed in the RV outside of his house for a few months and then she found a house. (one that I would eventually buy from her when she met a man, had a baby and got married. In that order lol. Yes so much has happened…)

At first, I felt really weird about staying there, but not because of him. He took my daughter, my grandkids, and I into his family as if we’d been there forever. He was one of the greatest men that ever lived. I could see why C is the man that he is. He had a wicked smile. When he smiled it always felt like he had a secret hiding behind it. You know what I mean? Like a twinkle in his eye?  He always made me feel at home in his home. I just felt really weird because I have to lay down quite often. It feels super weird to be sick at someone else’s house.

To compound my awkwardness, when we landed here I was completely off of my mental health meds. Believe it or not, due to a pharmacy error, my old PCP had been refilling my depression meds for a solid year, while the pharmacy was putting my then current PCP’s name on it. I went to refill right after our parents died and was told that my Primary Care Physician would NOT under any circumstances refill my Zoloft. I was stunned. It’s just Zoloft! Not the “taboo” opioids! I could rant on about what this country’s ‘war on drugs’ is doing to the chronically ill society but I’ll save it…I went off of the Zoloft cold turkey while dealing with my father’s death. I’d been on it for over a decade. This had me almost completely homebound and desolate for a year. So, I felt really out of whack, and very not me…I often had to just stop what I was doing and go upstairs to lay down. C told me that dad understood what I was going through, as he took care of his ailing wife until she passed away I think a year before we got here. (C’s mom that passed was Senior’s ex-wife) He was the type of guy that made you feel good. He was quiet and strong, he carried wisdom with him, and he loved his people so strongly. We had 4 amazing years with him before he passed away. It’s been several months but I still feel like he’s here sometimes. I was present when he passed, but it still feels surreal to me.

Alright, I have to get off of my butt and get some things done around here today. I’ll be back.

I support rare disease day

I support rare disease day

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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,

Just Checkin In…

Just Checkin In…

Hey all. It’s been a strange week, sad, emotional. Leaves me feeling grateful which makes me feel guilty. Lots of feelings going on. It’s Friday at about 10 to 6 in the evening and I’ve cut myself off from the news for a bit. My mind was going on overdrive and the feeling in my heart were overwhelming so I gave myself permission to tune out. 

Right now Bean’s taking a nap. She does every Friday after school so she has the energy to stay up a little late with her sister. 🙂 I think it qualifies as a ‘parent cheat’ as C and I get to sleep in a little bit on Saturday mornings. Shhh, don’t tell anyone that we are flawed parents just like everyone else! haha! She’s snoring away and although it’s cute, it means we have to get her back into the ENT doc. She had her adenoids and tonsils removed and her breathing was like night and day at night. If that makes any sense. But now she’s snoring again and I just want them to have a look see. 

Other than that I really don’t have any new news here. Life is cruising right along without any major roadblocks, so that is good. I can’t complain. I hope that you are doing well, and having low or no pain days. That’s about all we can hope for, yes? Take care. 

I’m leaving you with my latest page. I used Rebecca McMeen’s kit Waverly. I love her style, her dolls are always amazing. 🙂

Until next time,

 

 

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. 🙂


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 🙂

 

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

 

 

 

 

 

 

 

 

 

 

 

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