Tuesday, February 28, 2017

Rare Disease Day: MCAS


So, in Oct. last year I let you all know I had a form of dysautonomia (this post) for dysautonomia awareness day. Well, today I will do the same for rare disease day. I am rare (and not because I often feel like my brain is undercooked!) and I have MCAS (mast cell activation syndrome) which is considered rare and hard to diagnose. In very short, incomplete terms MCAS is a condition where my body thinks I should act allergic to things I have no allergy. There is a lot more to it, but since it is considered rare, it won't have much impact on you so I don't want to talk about my diagnosis. This is really going to be a short acknowledgement that there are people out there with rare diseases and disorders. Anything that has under 20k (in the US) citizens diagnosed is considered rare. Besides getting funding to help one rare disorder or disease helps more rare disorders to get recognized and diagnosed.

*Warning* Rant about to happen (but it is short)...

I do want to say somehing... I wouldn't have gotten diagnosed without the ACA. This is the main reason I was unhappy that Lord Dampnut (anagram of 45's name from the comedian Colin Macherie) and the republicans won in the last election. They were after the ACA and I believe them. I figure once Ryan guts it enough (already happening and has not only started to gut medicaid but also medicare with more down the road) he will probably implement his version in which those with preexisting conditions get put into a pool and get their insurance from that group. Yea, not affordable at all and quite frankly it sounds like the Hunger Games for medical help. Medical Games? Do not bet on me (just an FYI). So, I already know I will have to decide which medications I can keep and which will go. I have already made that decision but will only worry about it once my ACA is completely gone. I can't do anything else at this point. I will worry what will happen if something major happens but there is little else I can do at this point. Many of these decisions will be out of my hands. Others will be hurting as well and are even worse off than I am. Even if they keep some semblance of the ACA, I figure it will be so confusing it will be unusable. Seems to be the way this regime is going about everything. The insurance has less restrictions then I've ever seen, and so many people will be hurting so much more than even before the ACA.

Okay, soapbox is over. You can come out now. πŸ˜‰

Here is the official Rare Disease Day Video:


I agree, getting a diagnosis is hard. Even if you aren't rare, it can be a hard thing to do especially when it runs afoul of a doc's ego. This is why the ACA (or good affordable health care) and research is so important. Also, while you are trying to get that diagnosis and are frustrated, remember this: 


Sometimes this is more important to remember than those that say never quit. Sometimes you just have to have that melt down. Forgive yourself and move on. πŸ’–

I also want to address something else. I have migraines so everyone (it feels like that on social media) is an expert on migraines... even those that don't know what they are exactly (other than a bad headache... if you believe that I have a bridge to sell ya!). So for those of you who don't hold a medical degree, please do not give unsolicited advice about a problem you know nothing about. [Edit: I'm really talking about those that insist that their way is the only way and to do otherwise means you are faking it. Generic posts do not bother me] Plus the cure you have found that your second cousin's ex-sister in law's best friend's aunt's uncle who knows a guy just may not be the cure the person you are talking to is looking for. Even though it usually comes from wanting to help, the best thing to do is just say "I believe you". When you have an invisible illness (rare or not, it doesn't matter) you are often told that you are a fraud. Hell, you tell yourself that enough times that even in the midst of pain you start to question it. Fakers are easy to spot so don't assume that everyone is faking it especially when there is evidence to the contrary. If you feel they are just in it for the attention then disengage instead of insult someone who might be genuine. Okay, off that soapbox for now. 😁


Okay end of post. I know there are so many other things I could have taken on, but since I know how it feels to be overwhelmed, I just took on a couple and hope I made some sense. I also hope you took something away from it. 

If you want to get more involved with Rare Disease Day:


Wednesday, February 15, 2017

The Rising by Heather Graham and Jon Land

400 p.
Publisher: Tor Books
Published: 1/17/17
Source: From publisher for review
Twenty-four hours. That's all it takes for the lives of two young people to be changed forever. 
Alex Chin has the world on a plate. A football hero and homecoming king with plenty of scholarship offers, his future looks bright. His tutor, Samantha Dixon, is preparing to graduate high school at the top of her class. She plans to turn her NASA internship into a career. When a football accident lands Alex in the hospital, his world is turned upside down. His doctor is murdered. Then, his parents. Death seems to follow him wherever he goes, and now it's after him. 
Alex flees. He tells Samantha not to follow, but she became involved the moment she walked through his door and found Mr. and Mrs. Chin as they lay dying in their home. She cannot abandon the young man she loves. The two race desperately to stay ahead of Alex's attackers long enough to figure out why they are hunting him in the first place. The answer lies with a secret buried deep in his past, a secret his parents died to protect. Alex always knew he was adopted, but he never knew the real reason his birth parents abandoned him. He never knew where he truly came from. Until now.
My thoughts:

While I would classify the book as YA since the protagonist is a teen, I really can see this being read by adults as well. It is more a sci-fi thriller than YA in it's feel.

This was a intense ride. There are a little bit of social issues at hand in this book which I found interesting since it is a turn on its head than what is generally expected, but it really is about Alex, Sam (an intelligent girl) and aliens which all fit into questions about Alex's life he never thought to ask. There is murder and a mysterious plot in which Alex and Sam must figure out and stay ahead of what or who is stalking them. Not sure who to trust, often they fall into the right hands and while this is terribly convenient, it also doesn't feel too implausible.

I'd say that this is an easy sci-fi book if you are looking to get into the genre but not willing to go whole hog science. If you are on the other side of the spectrum of wanting a lot of science in your sci-fi, there is science in the book and it is well placed and it makes sense. Nothing too over the top but just enough to keep the plot holes at a minimum. It really is the thrill and the mystery that takes precedence in the book.

I give this book 3 1/2 stars. I think those looking for an easy but thrilling sci-fi book would enjoy this one. Also, while the ending is a bit of a cliff hanger, it also isn't as well. It can lead to other adventures or really stand on its own while you imagine what could happen next.


Bloggy Note:
It took me quite a while to get to the review because I had one heck of a cold which didn't want to let go (I'm finally getting better). I also have a dog (not the dobie) who is having some bad days. Luckily she is also having some good ones inbetween. So, things may get spotty here at best.

😷 

Wednesday, February 8, 2017

Taking a Humorous Review Break: The Handmaiden's Tale and 1984

I'm sure you just went... "What? Humorous?" and then started making plans for my padded room. Na, just more Thug Notes (yes you might get sick of me posting these, but I like them). These are humorous AND very informative. I love his analysis. I thought I'd take 2 books which have reemerged in the best seller lists. You can see why they are popular now.

The Handmaiden's Tale:

1984

Yea, so it might be cheating a bit letting someone else review these, but they are pretty good book reviews!

Enjoy!

πŸ“–

Monday, February 6, 2017

Binge Post: Netflix

As most of you, I've been overwhelmed, but also taken the time to learn what is going on. In the middle of that I need to take a break to recharge and that is also why I've been trying to make more positive posts like this lately. I'm a bit scattered so my entertainment reading has been a bit sporadic. Thankfully I've been able to binge a bit on Netflix shows. I've always felt behind but I'm catching up to all you cool kids. 😎

In the past I talked about Jessica Jones and Luke Cage. Well, the one that started it all was Daredevil. There are 2 seasons there right now. For a good Catholic boy with a strong moral compass, I'd have to say this one was surprisingly the bloodiest and darkest of the three. Yep, a few times I had to close my eyes or look away. So, do be aware of that.

Season 2

I also finally watched all of Penny Dreadful
I really enjoyed this one and I really liked the dark take on all the creatures we are used to seeing. Then the ending episode came. At first I thought it was an apt ending, but the more I thought about it, it was horrible and left WAY too many secondary stories hanging. It was cancelled and they just threw together an ending. So the more I thought about it, the more I hated that ending episode. Too bad, because I could really see this take off in so many directions.

πŸŽ₯

Friday, February 3, 2017

Every Which Way Crochet Borders by Edie Echman

Genre: Crafts
224 p.
Publisher: Storey Publishing
Published: 1/24/17
Source: From NetGalley and publisher for review
Step-by-step instructions and symbol charts put these 100 creative new border designs within reach for beginning and advanced crocheters alike. If you’re ready to chart your own crocheted course, Edie Eckman offers plenty of helpful design advice, including how to choose an appropriate border for each project and how to incorporate an element from the main stitch pattern into a new border design. She then explains, with the help of close-up photos, how the same pattern can have dramatically different results depending on the weight of the yarn. With each pattern diagramed to approach in both rounds and rows, Every Which Way Crochet Borders is an inventive and invaluable resource.
My thoughts:

Well, one of the crafts I like to do is crochet. However, I rarely have the patience to do large crochet patterns. So, when I saw this one, I knew it would be for me. It had exactly what I wanted. Not only did it give a great variety of border patterns, it also gave me how to embellish a fleece blanket. That was really what I was after.

I have read other crafts which prefer a hook that has a needle in it to puncture the fabric, but you are still left to figure out even spacing as well (in my case specifically) how to not puncture yourself. There is a rotary blade (you can find the blades and handles in the quilting section of the craft store) that cuts the fabric at even intervals and you evenly cut with that one. Perfect! It is a bit costly for one blade, but it would serve the exact purpose I will need. I haven't purchase it yet, but I am saving my pennies for it later. So you can see, you can find all manner of tidbits within the pages.

So, while some of the borders are very simple and easily achieved, I would still put this book at advanced beginner to intermediate depending on what one you are following. If you have the basics down you can take off from there much easier. There are helpful hints for beginners as well so don't be afraid to try it.

I give this book 4 stars and highly recommend it to crocheters who want to really embellish those items with a unique border or those needing inspiration getting into a new craft.

Bloggy note: If you would like a short intro by the author and publisher, a short article HERE that helps you choose the best border for your project.

πŸ’ 

Wednesday, February 1, 2017

Taking a Break: Humanity and a Humorous Book Review

No matter what side you take with politics around the world (seems like the US is far from the only one experiencing turmoil) I think you have been overwhelmed as I have lately. I do think we need a break on occasion to charge our batteries. So those about to leave, relax nothing bad here at all. I hope this helps a bit to recharge so you can continue to #resist!

Now that one may make you tear a bit, but they will be good tears, I promise. The kids wrestling match gets me every time (ok, all the kid ones get to me)!

Also, if you know me, you know I enjoy the classic, Jane Eyre. However, I love this version and analysis of it. Do watch the ending for the analysis. He does a great job of it. Good overview for those that haven't read it or seen the movie. LOL A bit NSFW due to language. πŸ˜‰
Hope that put a smile on your face.
😸