Friday, November 11, 2016

If you are scared, angry, confused. Here I made you this.

This election was fought and won by fear. Now fear is spreading across the nation spreading distrust and destruction. The way to conquer fear is by confronting it head on with honesty! So lets be honest, we could have and should have done more, so now is the time to stand up and do more! We still live in the greatest country on earth and with that comes freedom of speech, the right to peaceful protest, and the ability to take part in politics at every level. We only have two years till midterm elections, that may seem like a long time but in the face of change that is a blink of an eye. So here are some of the things(big and small) we need to work on starting now. We need champions, heroes don't have to be perfect they just have to stand up for others in times of need! Those in need or have been threatened by this new administration include but aren't limited to People of color, Disabled, Women, Immigrants, LBGT, Education... our planet.

In no particular order lets dig in to what you really can do! Most important remember you have strength, in mind, body and spirit. Even if you only have a little to give of any those categories, there are many of us and it all adds up! This vote was 47% vs 48% there are "slightly" more who voted for rights. We are a big community and you are not alone. Make sure to speak out, not just for change but also to let all who afraid know that they are not alone. That this is not okay and we are all going to do our best in this uncertain time! Realize that the people that voted for trump were scared too. We may not agree with their vote, and fight against many of the things that vote represents, but closing doors is how we got here (link here to family gathering survival guide). Bridge the gap focus on the things we agree on, better jobs/wages an economy for all not just the rich, Elisabeth Waron put it best Here.

Image from

Most important is make a plan, have a strategy so you keep being involved, life gets crazy and it's hard to keep up, but this is worth your time. So many people are counting on you to be on the right side of history(If you voted for trump are reading this and would like to bridge the gap click here). Most all organizations have things you can sign up for to keep you engaged. If nothing else follow these organizations on social media so you can keep up with what is changing and what is being stopped. Don't underestimate Social Media more people are getting their news from Facebook then any other source. If you are seeing good reporting on important topics Like and Share! Get in touch with your Representative or Senator when things are going too far. Our elected officials are civil servants, we need to remind them they work for us! Don't forget this works we have already had some success! If you'd like to understand the issues a bit better I'll get links in the titles, one of the most powerful things a person can do is be informed. Now to some potential strategy for change, below that are some of the issues and great organizations already working hard on them.

Strategy One: Identify your strength. If you have time or can make time pick an organization and volunteer, organize or run. If you have funds donate. If all you have is passion, advocate. Read everything you can on the topics be well versed have concise clear rebuttals against bigotry! Be a cheerleader/ supporter make a group that keeps each other accountable, never underestimate how important an encouraging word is, one text a week can mean the difference between giving up and fighting on.

Strategy Two: is the most creative I've seen. Calculate what your taxes would have been under Clintons Tax plan and donate the difference to the organizations that are already working hard to protect the things you care about the most. IE donate, use that donation as a tax right off and trump trump! It really is quite easy to do, this link will give you all the Tax Details

Strategy Three: Get Loud and make it count! Politics can bring out the worst in people this comes out in social media, so in an Ice bucket challenge way, lets challenge ourselves and others to donate a dollar for every political post we make. If we believe in what we are saying lets back it. we vote with every dollar we spend, lets tie that together!

Strategy Four: Justice Jar(like a swear jar but makes a difference) Every time you want to yell at the TV, Radio, Computer, yell! Yell with your wallet, use your anger as a trigger to make the world better. Don't just be frustrated take action! Think of this one as the swear jar for social justices! *this one would bankrupt my house but maybe it will work for you.

Human Rights! A lot of people feel unwelcome cast out or threatened. A small way to counter act that is start wearing a safety pin! I'd like to make this a anti hate symbol across the board, so no matter what you choose to champion please make a habit of this.

The easiest thing you can do with the biggest impact toward counteracting the hate promises of this campaign, is to donate or get involved with the ACLU "For nearly 100 years, the ACLU has been our nation’s guardian of liberty, working in courts, legislatures, and communities to defend and preserve the individual rights and liberties that the Constitution and the laws of the United States guarantee everyone in this country." ACLU Facebook

If you want to focus to individual organizations/causes follow the links below.

Women's rights! Planned Parenthood They need your help! funds are always appreciated and we know this administration has them straight in the cross hairs! The great thing about Planned Parenthood is that this is nothing new to them, they are set up to fight with anything you have to help: time, money, campaigning, they are pros but are going to be hurting. propose total abortion ban in Indiana Planned Parenthood on Facebook

Feel like doing more check out 10 ACTIONS / 100 DAYS From the organizers of the Womens March "We did it! On January 21, we came together by the millions, across the globe, to march, speak and make our voices heard. But it doesn’t end here—now is not the time to hang up our marching shoes—it’s time to get our friends, family and community together and make history. That’s why we’re launching a new campaign: 10 Actions for the first 100 Days. Every 10 days we will take action on an issue we all care about, starting today."

LBGT Rights! With Mike Pence being pro conversion therapy and many other hostilities to the LGBT community, this is a scary time for many newly weds, and y'know the whole community! HRC "The Human Rights Campaign represents a force of more than 1.5 million members and supporters nationwide. As the largest national lesbian, gay, bisexual, transgender and queer civil rights organization, HRC envisions a world where LGBTQ people are ensured of their basic equal rights, and can be open, honest and safe at home, at work and in the community." HRC Facebook

Immigration Rights! Family's deserve better, humans deserve better then this. Now with the new administration referencing Japanese internment camps for making their police: “We’ve done it based on race, we’ve done it based on religion, we’ve done it based on region,” Mr. Higbie said. “We’ve done it with Iran back — back a while ago. We did it during World War II with Japanese.” We know that must stand up against segregation no matter the supposed justification. Immigrant Defense Project "We aim to abolish a racially biased criminal legal system that violates basic human rights and an immigration system that every year tears hundreds of thousands of immigrants with convictions from their homes, their families, and their communities." Immigrant Defense Project Facebook and the The International Refugee Assistance Project (IRAP) "The International Refugee Assistance Project (IRAP) organizes law students and lawyers to develop and enforce a set of legal and human rights for refugees and displaced persons. Mobilizing direct legal aid and systemic policy advocacy, IRAP serves the world’s most persecuted individuals and empowers the next generation of human rights leaders."

Disability Rights! losing healthcare because of previous known conditions will cause suffering, and could end lives. DREDF "To advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development." DREDF Facebook

Chalenge hate! The best way to do this is to be well informed. Listen to the people that are living these injustices Blacklivesmatter is a great resource for the injustices that people of color are facing. Reach outside your comfort zone to make friends and learn safe ways to stop harassment. This Cartoon by Maeril is a great start.

Election 2018! You here, now, looking for options means you are smart, passionate and maybe it's time to think of running for office. If thats not your thing okay, there is more you can do. Midterm elections have low turn out so getting people registered to vote and committed to go to the polls is crucial. Also look in to supporting the ladies that are running. These great sites will help with Both running and supporting future female leaders!

She Should Run and their Facebook.

Women of color looking for even more resources for political success check out Our100 they are set up to show you that you can do it! Sorry I couldn't find their Facebook.

Emily's list and their Facebook

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Science, National parks and our Planet ! The EPA will need your voice as well. Two great options here Earth Justice "With your tax-deductible gift, Earthjustice will fight in court and on Capitol Hill to: • Preserve magnificent places and wildlife. • Protect people's health. • Advance clean energy. • Combat climate change." and Sierra Club "Throughout its century-plus history, the Sierra Club has been at the forefront of the movement to protect America's wild places, and the beauty, escape, clean water, wildlife habitat, and recreational opportunities they provide. The Our Wild America campaign will work to create a national network of connected wild lands and marine areas to preserve America's natural, cultural, and recreational heritage."

Education! Our system is very outdate, the changes that are being made are not based facts and is a shame to our country we do need change. however the new secretary of education is has almost no experience in public school system, even sending her own kids to privet schools. School vouters are a complicated topic but what we do know is that when they are use they aren't giving children in need much of any good options. Also we need to take a look at what Pences has said about evolution. Now all of that being said I personally feel its important to note "Highly educated more likely than less educated to hold liberal views" it will not benefit this political administration to help children to achieve their best.

Still want to do more? here are more lists, an overwhelming amount of places ready to help! That alone should give hope. racked, jezebel.

Need more motivation, check these out: Some positive, some silly, some horrifying. Just like our next 4 years...

Hillary's Speech

Colbert

The Pendulum Swings Both Ways

Please no!

Leslie Knope

Day 1

So many videos and important sites are coming in daily I've decided not to post them all as individual links but to make Youtube playlist of all the videos

and a Pinterest of all the amazing links, info-graphs, clear arguments etc. . I'll still add the most poignant ones on here as the come in but I want this page to be as clean as possible.

Oh and if this post helped you please share it, there are a lot of people looking for direction in this time of unrest. Also check back from time to time I'll be updating this post with more inspiration and calls to action as they come in.

Saturday, October 29, 2016

Halloween 2016

So that Spooky time of year is back, and it's a big deal at our house! I'm a person that believes in sharing your blessings by feigning people. Now I can't do nearly what I used to, but with a lot of help I can focus on making some fun treats. I'm a big fan of Pinterest I got some grate recipes and inspiration that I have been dying to make. Keeping my health in mind I can put my culinary background to some good use, I do this by doing a TUN of prep work through the week so the day of is mostly just putting things in the oven.

now I'm going to work my way around the table starting far left.

We start wit the big black caldron with the chunks floating in a orangey liquid sure to get a party going. this is a altered version of Dozers deadly punch

*1 jug of orange juice

*1 two letter of sprite

*1/2 cup grenadine

*1/2 bottle of Tequila

*1/2 bottle of vodka

*1 bag mix frozen fruit *No ice to dilute the punch. The fruit is a fun alcoholic punch in the bottom of your glass, carful though because the longer it's in there the more deadly the fruit becomes.

Next we have Pudding "shots". Now being kosher meens jello is Out, but pudding is a great option! I did two flavors, the cream color is Baileys Irish cream the red is Chambored. To get the best swirl I put some of the red pudding on the side of the Baileys bowl when the pudding is just setting up, then pulled in the cream color first rotating in to the red then back to the cream. refrigerate till party.

For the Baileys

*2 packs instant vanilla pudding

*2 cups milk

*1 and 2/3 cup Baileys

*1/3 cup smiernoff whip-cream vodka

For the Chambord pudding

*1 pack vanilla pudding

*1 cup milk

*2/3 cup Chambord

*1/3 cup Smirnoff whip-cream vodka

*1 TS red food coloring

Shot Syringes

Behind the "shots" is a grinch onion casserole origanl recipe here I did add some wishishire souse, spicy brown mustard and black pepper to tast.

In the crockpot is Toxic Wast Mac original recipe here I mostly stuck to this one par cooking the veg and making sauce the day before. I did double this recipe. I feel if your going to provide this much alcohol then having plenty of carby dairy foods to help peoples stomachs is only fair.

In front of the crockpot is sweet potato rounds original recipe here yah so I was Exhausted by the time I got these out so I was missing some things on them, but I still think they would be batter for a lunch thing not a party. They just weren't drunk foodish. this is how they should have looked.---

Then Apple Turnovers! super easy and a crowd favorite. make extra they are great breakfast for the week. Cut each sheet in 4. Put 2 spoonfuls in the middle of pie filing in each then fold diagonal corner to corner, press edges together and bake 425 20 min.

*2 packs puff pastry

*2 cans apple filling

I when a little overboard with the things to dip in the chocolate fountain even as far as to take a torch to the marshmallows(big white tray on the end). I will say for the chocolate fountain turn it on about 10min before you need it so the chocolate doesn't cool off when you add it to the fountain. As for melting the chocolate in a safe bowl microwave for 30 seconds increments string between each. It took 3 turns of 30 seconds for my chocolate. Then poor chocolate into the fountain and enjoy! I found this sit very helpful for my first chocolate fountain

1 pack semisweet chocolate

3 TS coconut oil

The last thing is a bowl of Eyes. About three days before needed drain all the liquid off the cherries fill the jar up with Bourbon. Day of stuff each Lychee with a cherrie, plate and enjoy!

*2 cans Lychee

*1 jar maraschino cherries

*2ish cups bourbon

Monday, June 20, 2016

My health and What we know now.

So I'm going to do this two ways: the simplistic short and sweet first, then if you want to keep reading I'll elaborate. If you have time feel free to read it all, also all the memes. At the end I'll have some requests. If you're short on time skip to those, it's not going to hurt anyones feelings.

Basic understanding of what's going on:

My body is not good at making this one thing, but it's random. Some days it makes it great, some days it can't hardly make it at all. So the day the skin of my elbow was made it did a bad job, so that skin just rubbed off, but that doesn't exactly count for all of my skin at once... Every cell(in about 80 percent of my body) has a chance to be made poorly so I can be fairly normal in some places and tissue thin in others. That's why my limp is different every time you see me, I have different joints failing at different times but when it's time to repair a rip, I have that same chance to make it good or bad so it's never the same. Luckily this means a chance I can heal back better than I was before.

The more in-depth look at things:

So I have some form of Ehlers-Danlos Syndrome (EDS for short) this is an incurable connective tissue disorder. Connective tissues are things like elastin and collagen, they make up things like tendons, bone, organs, skin... really effecting about 80% of cells/structures in the body.

EDS has many forms that affect each person differently. The big scary one is vascular(life expectancy 48), the really common one is hypermobility (range of symptoms, normal life expectancy) and there are many more.

As for me, I'm somewhere in the mix. I do not have any of the known vascular gene defects( YAY ). I do have a collagen gene defect that has never been seen before---> Two things with that: 1. The genome is HUGE so that's not that big of a deal. 2. you can't have a diagnosis with out any other cases. There just isn't enough information to know if that defect is or isn't causing my health issues( !frustrating right! ). The Geneticist did confirm that this particular gene does work with the genes that do make the vascular eds, and could definitely have some hypermobility side effects. My defect/mutation fits with what we have been seeing with my health. She made sure to reinforce that we can not confirm this is what is causing my eds but we can't rule it out either, "hopefully we will know more in two years"[small aside: the labs program ran the change and found it to be "probably harmful" for what ever that is worth]. Also everyone repeatedly went over the fact that this has a 50% chance to be passed to children(good thing not having kids was the plan anyway). There have been (only)two papers that talk about people with a defect in the same gene, they ended up having similar, sometime much more sever symptoms(Bethlem Myopathy). So maybe some things to look out for but again, they have a different mutation than I do. What all this genetic info means is: not a lot of real answers.

As for my day to day, I live purposefully. EDS has made me pull back and look at what is important, I try to make what I do really matter. My energy has become so valuable! Because my mussels work all day to hold me together, and my body is constantly healing all the damage that happens, I'm exhausted a lot of the time. This is painful but most days are a lot like having the flu: really achey and tired. Now when things do dislocate(go completely out of place) or subluxate(just go out a bit)the pain is much much worse, mostly because it is pulling or ripping other tendons, and sometimes whatever is out of place can pinch or grind on other things. I'm pretty good a getting things back in place if they go out, but if they just are lose and grinding there is not much besides external reinforcement that you can do. The new annoyance is I have some tendons snapping, like in the arches of my feet an my hands(this fits more with the Bethlem Myopathy than EDS but again unknown mutation). When I do get energy I tend to go a little overboard but these infographs have helped.

Bry and I work on lots of things that help me live a happy normal-ish life. Lots of splints, ace bandages, supports(some homemade), blankets, hot packs, good chairs and shoes all help. If anything gets too bad I have a good doctor that we trust. She understands this is an incurable disease, so is good at helping with quality of life stuff. She is helping me with my weight (less weight on my joints, less stress on them). My heart does some fun things that we are keeping an eye on (I get another halter monitor this week). The best people in my life have made me swear to get an MRI if I have stroke symptoms again. I have little tricks like painting my toenails so I notice if my feet aren't circulating(please let me know if my feet are purple, I don't always notice). Neck pillows for long drives, and a pill organizer because even at home, life is still crazy enough to make me forget if I need to take my pills. So all and all I am blessed to have the love and care I have had so far. Also when we finally get settled at our next place, I'll get a good team of people to look after individual things like physical therapy(which may help but will take years) and a heart specialist ect. Till then I'm still working on the invention, taking classes and crafting and playing lots of video games. WOW is a really good adventure on days I can't leave the house.

So here are my requests

1; Let me vent. I'm going to have some bad days, I need to process this stuff, talking things through can help so much! It's not the end of the world I just need to get it out. Trying to keep all this in can be a poison. Please don't feel like you should have an answer (the doctors don't even have one) just be there confused with me. The Most Important thing you can say is that you're with me! It is so very isolating to not be able to do a lot of things. I have had to give up things like rollercoasters and 5k's and most outdoorsy stuff, but those are things we do as friends so as long as I get to whine about it from time to time with you, I'll be just fine.

2; You don't have to walk slow but I will. If you want to go somewhere with me PLEASE be okay and supporting of my speed or lack there of. I need a cane some days, not always, but I'm definitely not going anywhere fast. This is important in our society, a society that is in such a rush everywhere they go. It's impossible not to hear people's comments about being stuck behind the "slow person", in the grocery store or leaving the theater. People that roll their eyes after they impatiently wave you to cross the street in front of their car when they see you limp. So I guess the term is ableism... I don't know how I feel about the term, but who hasn't heard the phrase "if you don't have your health, you don't have anything" "what, are your legs broken?" and other comments about work ethic relating to one's value as a person... so yah, I'm slow. I'm still working on being okay with that... you can help :)

3; Ask questions! This whole post was brought on by a friend being really concerned that she scratched me(you know when you go to hug someone and it's like everyone has too many limbs and awkward happens). This made me realize I tend to only post the really good or bad things, not necessarily the important things.

4; Don't make me stop! If your concerned about me (awesome I love you too) and really think I should stop/go home/not even try, well I'm not dead! The easiest way for you to think of me and my health/limits is as a rocking 80 year old grandma. I will cook, bake and love you with all my heart. For the most part I can and do take care of myself but if we are out in public, a place to sit is really appreciated.

5: Keep being you! I am a firm believer that all hard is hard! Your hard is important to me, please keep sharing your life. We all are going though things and mine aren't any harder than yours. So thank you for taking the time to read this.

Now just some silly memes and EDS related links

My skins falling off, watch out Bryan!

Just some random eds links feeling odd things

Monday, June 6, 2016

It's okay to cry

A post from Facebook today;
Yesterday I cryed a lot. Chopping carrots for the cowder I had to tell Bry if I started crying it wasn't that I couldent do it, it was just vary had( and started crying telling him this), he like the awesome person he is said " what can I do?"  I told him I needed to do this, and that I'd be okay, not to tell me to go sit down or stop. So he didn't he was just the best sous chef ever! You see its just so much work to keep my knees from giving or going backward, not dislocate my wrists, not roll my ankles ext... The overwhelming effort it takes to hold all of me together, and as always attempt to have good knife skills. I immediately made a joke that I should have weighted till the onion to say anything so to hid my tears 😂 because really I was okay. I was (with help) getting to do one of my favorite things in the world, cook with my best friend. Pain is exhausting, I am fatigued a lot on the bad weeks, but I'm still me. I still have the attention span of a nat. so yes I get board of reasting and have to get up and create! I need it it's part of who I am, and the chowder turned out great. So if I do start crying its not all bad it's just all that pain and  exhaustion finding a way out cuss I've been to busy living! Also 100 husband points to Bryan for not just waking up to help me(on a weekend none-the-less), but letting me cry. It's a strange thing when a man lets a woman cry and be feelings with out have to "fix it" just loving with her in her tears. That support really helped me all day. So yes today is my favorite day but so was yesterday because as always ( even in the pain) I feel overwhelmingly blessed. Also thank you all for being my friends, and going through posts like this. I know it not the average Facebook stuff to share ones struggles but it's where I am now and we all know I'm way to brutally honest.

Sunday, June 5, 2016

Salmon Chowder

So I made Salmon Chowder and it turned out pretty good.

1 onion diced

2 cloves of garlic diced

6 carrots sliced thin

1 tablespoon butter

Sauté over medium high heat for about 10 minutes add

6 medium potatoes diced

Continue cooking, stirring occasionally till the potatoes get a bit of color add

1 can chicken stock

3 Tablespoons of worcestershire sauce

3 tablespoons cognac

3 Tablespoons port

1/4 teaspoon corse ground black peper

Cook for 10-15 minutes medium high heat till you can easily poke a fork in the potatoes turn the heat down to low add

2 bay leaves

1/8 teaspoon(2 pinches) ancho chile paper

1/8 teaspoon pumpkin-spice (could not find the old bay and believe it or not they have a lot of the same ingredients)

1/4 teaspoon paprika

1/4 teaspoon spicy brown mustard

2 Tablespoons butter Gently stir, this lets some of the starch from the potato thicken the soup. once the soup has cooled to a mild simmer add

2/3 cup heavy cream

1.5 lb salmon cut in 2 oz chunks

1/4 teaspoon parsly

Cook till salmon is just pulling apart when stirred. Remove bay leaves, salt to taste and serve hot.

Also no fancy flatware here, when I make food its to be eaten so not a lot of time was spent on plating or photography, but it was !tasty! and thats what counts. Also the having EDS make everything complicated so just making chowder was my accomplishment for today. A big Thank You to my husband for helping so much that I could even try this :)