Friday, June 20, 2014

What We've Got Here is a Failure to Communicate

Communication. We all do it. Everybody in the entire world communicates. From the day we are born to the day we die we communicate.

Everybody communicates in a little bit of a different way and we sometimes don't understand each other at all because of the fact that we may not even be speaking the same language. In fact according to the Ethnologue, which is considered to be the world's most extensive catalog of the world's language reports that as of 2009 there were 6,909 distinct language in the world! 

On top of there being so many different languages that may cause a mis-communication problem. There are also a whole bunch of different types of communication also.

  • There is verbal communication which includes sounds, words, language, and speech.
  • There is also non-verbal communication which convey's the sender's message without having to use words; it involves the use of physical ways of communication such as tone of voice, touch, and expressions, symbols, and sign language.
  • There is also written communication which helps convey the message of the sender with the help of written words. Letters, personal journals, emails, reports, articles, and memos. This form of communication also features visual communication as well, especially when the messages are conveyed through electronic devices such as laptops, phones, and visual presentations that involve the use of text or words. 
  • There is visual communication that involves the display of information, where the message is understood or expressed with the help of visual aids. For example, topography, photography, signs, symbols, maps, colors, posters, banners, and designs that help the viewer understand the message visually. 
We already know from this post that I am not the best at communication to begin with because of my slightly Asperger's brain. Then add on trying to read people's thoughts, emotions, and feelings on a flat, black and white screen with a flashing cursor, and no tone of voice?? Impossible for me most of the time to understand what people are saying. Quite frankly I have no idea how any relationships (friendly, familial, or intimate) are still held together because of the lack of tone of voice and body language in a Facebook status.

Facebook, Twitter, Instagram, Pinterest, Blogging, Google +, and many other social media/networking pages I swear were invented to cause you to have fights with your friends because you read your friend's status and they're complaining, and you're like well I do that sometimes, oh crap she/he is talking about me. I guess we really aren't friends anymore. Then you send a PM to them or email or whatever and start telling them off and they can't get a word in edgewise to tell you what they posted has nothing to do with them. 

The first rule of social media/text communication where you don't have a ton of voice or the whole story is to private message the person and make sure that you are cool with that person or if they want to "vent" about anything because you should not ruin relationships over a Facebook status for goodness sake. Make sure you know the whole story, don't judge so quickly. Don't get defensive and ready to fight until you understand where your friend is coming from.

 Rule # 2 of communication is to not spend your precious, little amount (if you're a spoonie) of energy backing yourself up. Odds are they will hate you and misunderstand you and judge you no matter what damage control comes out of your mouth. If they are going to misunderstand you and they make that very clear, then don't waste your energy, just walk away and don't look back. The conflict is probably doing more damage to you internally than them anyway. I dealt with a situation of harassment and threatening emails being sent repeatedly by someone who saw a facebook status I posted, didn't stop to get the whole story, took offense, and started defaming my character and integrity, harassing me, and threatening me. I just blocked her from all avenues because ain't nobody got time for dat! Seriously. I don't. It's not worth my energy.

Rule #3 For some reason, when I tell people things, it doesn't always get interpreted the same way that I said it. Just because you don't misinterpreted what I said, does not mean that I am wrong, or unethical, or unprofessional, or don't know what I'm talking about. It just means you weren't listening to what I was actually saying. Understanding is one of the hardest parts of communication to 'get'. Which brings us to rule #4 perfectly.

Rule #4 As a society we are taught that we are supposed to act interested in people's conversations. And we are expected to have the perfect reply to fit straight into the conversation that will flow and make the person feel validated. The stupidest part of that though is that while we are coming up with our "perfect reply" we aren't listening to the conversation at all and could be missing out on ample information that we could reply to more readily and appropriately, but we didn't hear it. Stupid right? Like why are you "listening" to a conversation, but not hear anything.

Rule #5 Remember that we all come into a conversation/communication setting with completely different backgrounds and we are all unique in ever way. So the way that I am saying something might be offensive to person X over there. Or person Y saying something else may offend me. We have to remember that everyone has a different perspective being brought to the table. We should embrace the diversity in our perspectives and put them to good use to solve more problems, instead of creating divides. 

Rule #6 If you did have a communication mishap with somebody...let it go. Get over it. Ask for forgiveness or give it. Life is to short to worry about things that happened yesterday, I've got enough to worry about today without worrying about yesterday too. Don't let someones craziness and intercommunication incident with you control your today, leave it back there. And if it was bad enough, block them from your life. ;)

Rule #7 And last but not least, the most important rule to keep in mind when you are communicating with people in any way, or when a intercommunication has happened and you feel a bit deflated. Always, always, always remember that you are who you are, and who you are is beautiful and amazing. You are in charge of your own feelings and thoughts. Don't let other people rule you, you get to choose how awesome you are. And when you communicate with people remember that you are awesome in your head and it will come across in your personality while communicating and it will be contagious and people will fall in love with you for all sorts of different relationships.

Friday, June 13, 2014

Technical Difficulties

Due to some technical difficulties, I'm changing the web address of my blog in the next few days. 

If you come to my blog by typing in the actual address in your web browser please leave me a comment on this post with your email address and I will make sure you are emailed with the new blog address link. 

If you find my blog by clicking the link through either of my Facebook pages, instagr, or twitter those avenues will be automatically updated with the new blog address when I post them, so no need for you to worry! :) 

Thanks to all my faithful readers!



Monday, June 9, 2014

20 Life Lessons and Random Thoughts

20 Random Life Lessons, Thoughts, and Realizations I've Discovered in this Past Week.

This will be a primarily pictorial blog. With just a small sentence with each picture talking about how it pertains to my life and why I all the sudden thought it was important this past week. As in June 1st-June 8th.

So here we go!

1) Sitting outside on the porch, even it's for only 20 minutes, when you are fair skinned and have a boat load of medications that say do not have large amounts of sun exposure. I guess the disclaimer on the meds were correct...haha!

2) This one is hitting me hard lately. I chose to go back to school to get my dietetics degree, I chose to write a thesis. I did not fully think out the consequences. But, in the end, I think it will be a very good thing. 

3) One of those choices I made was to do a thesis instead of a cumulative exam after all my classes and internship. I'm thinking that was a wrong decision because I often look like this. 

4) Well, I actually look like this. Because all day I live thesis and all night I dream thesis. I can't wait until data collection is done and the final part is written up and I can present to hopefully graduate on time. 

5) All the hard work pays off when I get messages like this from one of my committee members and it just so happens to be the one that specializes in fibromyalgia (which is what my thesis is about).\

6) Another thing that I am really working on hardcore right now. I want to not be so fulfilled with material possessions and more focused on what good I can do for others and how to be a better me to myself as well. I feel that my gift of sharing my knowledge and my ability to ration my time and activities helps me "be more" which translates into making me into a better person! 
7) I have discovered that I have 2 of these true friends. One especially. She can come over to my house and hangout together and we will both literally end up taking naps but still have the best time. That is such a special bond. I am so glad I have Crystal as a friend.

8) I love that I also have friends that have been through the thesis process and realize how much of a pain it really is. 

9) I've learned that "Don't Stop Believin'" is pretty much my life moto. I have so many things I want to accomplish in my life, and no is not an option. I believe that these things will come true one day. God's not done with me yet! 

10) I've learned that you need pain to grow. And without pain we will never really know who we truly are because pain changes us and helps us find our identity. 

11) I've learned that even though I make mistakes on a daily basis. Those mistakes are not what define me. I am more than that. 

12) I've learned, or am starting to learn, not to judge anyone (sick or not sick) because I have no idea where they came from. And when I get judged quickly or have my credibility questioned it really makes me mad. So I'm working on not doing that to others. 

13) I've learned to start accepting that my life will never be like it was before ever again, and it's just going to keep getting worse. But who says how my life was before than how my life is now? Who knows which ones better? 

14) I've learned you never know who you are impacting. These are excerpts from a private message from a person in a group that I am in, but I had never had a conversation with her ever. And she sent me the sweetest message. Here are some portions of it because I don't want her identified if other people reading could figure it out. 

15) I seriously, absolutely have no energy what so ever since I've started working on my thesis and I'm doing all of that from my recliner or bed so far. I have no idea how I'm going to start back to in class classes in August. The thought terrifies me.

16) When your hair is actually done and you go sit outside on the porch and take a selfie with the sun shining just the right way on your red hair and highlights, you actually don't look sick anymore. 

18) Having an IV pole with light up flowers wrapped all around it is much more satisfying and makes it seem not so medical when you are attached to thing all dang day every day and night, unless you are wearing it in your backpack. Yay for flower lights! 

19) Speaking of feeding pump backpacks. I might have an obsession. I've got all these and I still want way more. I mean you have to match with every outfit, right?

20) And finally, lately I've just been doing everything I can to live my life to the fullest. I don't know how much longer I have (well, none of us do really). But while I'm here I'm taking advantage of living life. You only live once. You don't get a do over. Life life. Don't just lay in bed and cross days off the calendar waiting for your disease to overtake you. Life your life. End of story.

Wednesday, June 4, 2014

Getting Comfortable with Being Uncomfortable

Disclaimer: If you read this blog and are participating in my study please, please do not think that I do not want questions and calls and emails. I would much rather you do things correctly than me not get a phone call or email. It's just that my life went from no communication to the outside world basically to a whole lot of communication and it is over stimulating me. I am very grateful and appreciative of all my volunteer participants and could not do this without you! You all rock in my opinion! You are making my dreams come true!! :)

I've been spending time doing nothing else (virtually speaking, of course not technically but pretty close) for the past 2 weeks.

I am not sure how many people that read my blog know this whole story because I don't really talk about going to school on my blog. So here is the deal-io. I'm getting my Masters in Dietetics. I was supposed to graduate 4 weeks ago, but I had to take an entire year off of in class classes and just do very few online classes due to all the hospitalizations, countless doctors appointments, therapies, infusions. etc.

To complete my degree you either have to do a thesis or what's called a CIE exam which is a test that makes sure you've met all the competencies to a satisfactory standard so you can graduate. I chose thesis track because that gave me 2 (now 3 due to last years crazy hospital, tube, appointment every day year) to complete the thesis. I could take my time and write and re-write and re-write some more to make sure it was perfect. I didn't want to do the CIE because it's a 4 hour test the week before you graduate and do to all my health conditions and the fact that they cause brain fog so I was scared that I would be having a bad day on that particular day and I wouldn't pass the CIE. So thesis track it was and my topic is "Does an anti-inflammatory diet alleviate any of the symptoms of fibromyalgia?" On that note if you have fibromyalgia, are between the ages of 18-65, don't have diabetes or hypoglycemia, aren't on a renal diet or dialysis, don't have cancer, and aren't planning on becoming pregnant and want to participate in my study send me a message on this page: Healing Hopefully: Megan's Chronic Illness Journey

There were so many glitches and getting approval and then denied approval then approval again. Countless hours of time spent writing, etc. My proposal section is 126 pages alone. Anyway, I was supposed to start data collection in the fall, but I was in the hospital all the time. In the spring I had 2 very heavily based research classes already. My adviser kept coming up with more things that I needed to do before I recruit participants, etc. I felt like we would never get this off the ground and actually be able to do the data collection at all and I would just never be able to graduate. Ever.

Then summer came along and I've finally been able to recruit participants in the study. I am just in the beginning stages of the data collection. I have one participant finishing her week 2 this weekend and most others are finishing their week 1 this weekend/week. Then I've had 4 meetings this week and only one of them can start because I received her informed consent. You cant start the study until I have all the email forms and the forms that are to be mailed to my house. But on the bright side, I feel like something that I have been working on, doing literature reviews, finding alternative solutions to problems, etc.for the past 2 years is finally coming to fruition and we may actually get some answers if it helps or not by the end of October. And that is very exciting for me!!! 

But here comes the part where I'm having to be "getting more comfortable with being uncomfortable).

Because of the aforementioned Asperger's that I was recently diagnosed with (and communication was my worst scoring on the test) and just my in general disdain of being on the phone/Skype/FaceTime/Google Hangout to anybody ever...this whole thesis orientation thing is kicking my butt. I know that these are my personal issues. And, if any of you that are in the study end up reading this please don't stop calling or emailing to ask questions, I just have to get used to it. I am sleeping so much the past week and a half and I really think it's because these meetings are socially awkward (in my Aspergers brain) and therefore the meetings are taking all my energy out of my body to use them for my communication and keeping my head straight with everything. 

You see, I don't even really like to talk to people that are very good friends of mine, or my family even 95% of the time. Usually I just like to sit in my recliner, watch TV, pet my dog and cat, and have the day pass me by. So if I'm an Asperger's person and don't communicate to even people I know, you have to realize the gravity of the the situation where I'm having to talk to all these people (face-to-face mind you via Skype or FaceTime or Google Hangout), that I don't even know (well I know some of them, but most I don't) and go over the informed consent and study process and make sure they do not have questions. I also have to answer all their text messages and emails and keep everyone's dates straight in my brain so that I can help them keep their days straight in their heads. 

You see, this is like an impossible task for me. I can't even make eye contact during most of the meetings because I am just trying to make sure I don't have any anxiety issues that would make my study results invalidated or anything like that. And when I'm not on the phone, email, FaceTime, Google Hangout, Skype, etc. my brain is constantly turning it's wheels on whether or not I confirmed dates with this person, has this person started yet, did I get forms back from this person yet, and on and on. It's like for the past 2 weeks I've only breathed thesis breaths and dreamed thesis dreams. It's so far out of my comfort zone it's not even funny, but I need to do this to prove to myself that I can and because I want to graduate. Haha. But mostly to prove it to myself that I can. 

Even though it is completely draining me of all my mental faculties, I know when my thesis is finished I will be pretty dang proud of it. And I've been thinking about starting a bucket list. And if I do, getting my research published would definitely be on it. I don't want these past 2.5 years of work to go to waste. Right now, while I'm getting acclimated to it and a pattern is forming in my schedule I'm completely exhausted and fatigued beyond the imaginable levels. But once we are in a groove and I finish recruiting participants I'm hoping I will get into the swing of things and maybe some of my energy will come back. I'm so happy I didn't start this during classes I would have gone insane. It's mentally and physically taxing as it is right now in the summer when I'm not doing much else. I couldn't imagine doing this on top of classes (I will have to still be collecting data until the end of October probably, but data collection is much easier than this orientation mumbo jumbo.) I just can't wait for it to be done. And even though it's a struggle and the days, nights, and weeks are gonna be long and hard. It will all be worth it when my name is published in some fancy scientific and nutritional journals in the years to come. But for right now I am just working on getting comfortable with being uncomfortable because I think that I'm just going to have to be uncomfortable to get this thesis done and written. There is no other choice. I want my research to come to life. There's no backing down now. High obstacles are what I strive to surpass every day of my life. This is just another one of those obstacles. 

Sunday, June 1, 2014

Informed Consent

Well, if you couldn't tell by my blog title today, I am deep in the bowels of thesis data collection period.  Which is oh, so exciting that the day is finally here where this thing that I've been working on for 2 years is finally to the place where I can collect data on it. But it's also oh, so exhausting and tedious, and takes so much organization and work and requires me to stay on top of everything and that's really hard for someone with as much brain fog as I have.

But, I digress. I've been thinking through this whole process this past week of getting people signed up for the study they have to sign an "informed consent" and I have to have the original, signed copy in my hand before they can do any part of the actual study or record any data. This is to ensure that my participants know *EXACTLY* what is expected of them (the procedures) or what might happen to them (the possible risks or the possible benefits) the research costs (I'm not paying them a penny or for their trip to the doctor if they end up there) and things like this.

So all week I have been reading this same 3.5 page document to people over and over again to make sure they are "informed" of what may happen to them.

Interestingly enough, I also participated in someone else's Master's Thesis study this week from Emerson college in Boston who is doing their study on the transition from pediatric hospitals to being a young adult with a chronic illness and hospitals and things like that. Before I participated in his study, guess what, I had to sign an "informed consent" form. He had to know that I knew exactly what was going to happen during the interview and that I agreed to be recorded and agreed for him to use my picture. But much of the beginning of our conversation was going over the "informed consent".

Then I started thinking that every time I have a procedure done at the hospital, I have to sign an "informed consent" about whatever procedure I am about to have. Whether it is having my J tube replaced, my port placement checked, to getting a blood transfusion, to a CT scan or MRI. They also go over the procedure and the risks and have you sign that you understand everything that is happening to you before the procedure happens.

So all of the research and medical world is built on top of this idea of "informed consent" most likely so that they have their boo-tay's covered so when someone comes back years later and says you did this to me and it wasn't the right thing to do, you can whip out that informed consent and be like well, you agreed to it, you signed this form right here.

But here's my question. If there is so much basis on "informed consent" in the medical world and research world (and probably more worlds that I don't know much about). Where is the informed consent form we signed when we got these stupid diseases?

Like seriously, God didn't like come down from the sky and be like "Hey, Meggers, today I'm going to trigger mitochondrial disease complex I, III, and IV defects in you. This is what happens to your body when you have that and these are the possible risks and there really are no benefits, here's your informed consent form would you sign here before I give you this disease so you can't come back and get mad at me later, because you knew it was coming."

It really doesn't work like that. The rest of the world is built on informed consents, but not when it comes to what we end up with in life. And I'm not just talking diseases, I'm talking hair color, skin color, height, weight, personality, everything about you yourself is picked out by God. And you don't get a say. There is no informed consent for life.

And sometimes realizing that really stinks. When you're up to your eyeballs in informed consents for your thesis and have them right at your finger tip. Sometimes you just start to wonder, where was my "informed consent" for this life. I didn't sign a permission slip for this. This isn't what I wanted, nobody told me this is how it was gonna be. This isn't fair. But sometimes, we just have to realize that even if our lives aren't exactly what we would sign for on an informed consent, there still beautiful in God's eyes. And He made us just the way He wants us. So I guess that's all the "informed consent" we really need. Because God kind of is the biggest signer of consent forms out there. He signs all of our informed consents and makes them up just as He sees fit. And we can't complain about that.