Pain, Fashion, This Girl

PAIN

For the month of September, I have reversed my usual blog order. Considering that my surgery is going to take place on September 25th, I find it relevant to be ordered as follows: Pain, Fashion, This Girl.

Below, you will find an interview from a fellow friend and chronically ill person who gave me permission to answer her questions publicly on my blog. But this amazing, strong girl wasn't sure if she wanted to be anonymous or not. She decided to make her name public, with no pressure from me. This Interview was conducted by Brenda Hankins. She wanted answers to about how I deal with my health issues, because honestly when your body isn't feeling good your mind isn't feeling great, and we need support. When this blog posts, it will be the first time for her to get my answers. I know this has been a long awaited blog and I am happy to be as raw and honest with you about my journey as I can. Since Brenda sent me these questions, and I asked her if we could present it as a type of interview on my blog, she came up with her own blog called http://ourinvisibleworld.wordpress.com/.

Interview

All my responses will have -R to start

Hey girl  I was wondering if you have any advice about being public about your health issues.
    

-R: My first bit of advice would to be confident in yourself and your journey, and as you are the only one that has experienced it, and there is no right or wrong answer. But also be prepared that you might not have all the right answers to questions that pop up, and allow yourself to be okay with that. Also, come to terms that random people will start coming up to you and talking about your sickness. This can be really hard, especially if you are having a difficult time that day. I've broken down into tears a few times, but allowed myself to reply by explaining today is not a good day to talk about it. I would also suggest that you have lots of research under your belt before you start being public. If the reason that you are being public is to inform people, you want to make sure you have the right facts regarding your illness.

Were you nervous about it at first? 

-R: I really wasn't nervous at first. However, the longer I was sick the harder it got. I expected to go back to my normal life within a couple months. So actually to answer your question, I am more nervous now about being public because I don't have my normal life back, and I think I led people to believe that eventually I would be cured forever. More than anything that thought has let me down, and probably others as well.

What inspires you to be public? 

-R: Awareness. Point of View. To help others that are fighting the same battle find a link to getting better quicker and the best way possible.

What things do you keep private? 

-R: Just intimate details about how my sickness has effected others around me. I don't feel like it will do any good to mention a situation or someone that is having a hard time with my health issues. I think I should share how I feel, or how a doctor feels, but not how my friends and family feel, and their response to certain situations. I have learned that ultimately whatever it is, that it is my choice and they can be a part of the conversation but they can't call the shots. 

I really need to just get on disability but I keep thinking MAYBE I'll be able to just work again and so I don't think I want my future employers to read about my health stuff. It's hard for me to be vulnerable in general.... 

-R: I understand where you are coming from, and I don't know what type of job you are looking for but most of them, don't ask about your health. In some situations, it's illegal for employers to ask about those details because of insurance and such. Remember that you don't have tell your employer about your blog or your posts on the internet.

I also wanted to say thank you so much for telling me to never give up on love and sharing your story about Brian with me. It had an impact on me as well as my friend who has a happy marriage despite her illness. Do you have any advice about how Brian and you deal with your relationship and illness?   

-R: It might sound silly but sometimes, but it feels like Me, Brian, CSO and lupus are in one room. We had to learn how to remove the disease from the relationship. So most of the time we don't do much but we find common ground to do things together, like when we watch a movie, play a game, walk our dog, read a book together, or play music together. Somedays it's just being able to have a meal together and enjoy doing it. It depends on the illness on what you can do, but we have found that for us it is very important to have weekly personal rituals as a couple. Also, we have a code word if I am somewhere and I want to leave because I simply don't feel well; Brian comes with full understanding with this word no questions asked. We also have to remind each other that we are always on the same team if we get in a tiff. There are lots of variables that go into a chronically ill relationship. The biggest thing that has helped us to grow, despite how awful I feel or he feels, is that we pray together every night. Some nights I pray, other nights he prays for us, and other nights we both pray. For us it is important to be as mentally, spiritually, and physically healthy as we can be day by day.

I know you can work part-time on disability and also just receive supplemental income.What is your experience?

-R: Apply for disability ASAP. You only will get it if you have the right amount of work credits, so the longer you are not working, the higher the chance you won't get disability. In my case I'm appealing with a lawyer because my diagnosis was made clear on a certain date, and I have the documents to prove it. However, it's a lot harder to get on disability than I thought. I'm unable to get SSI because I am married and my husband has a steady job. All of this is effects your funding.

I forgot to mention my illness has a big stigma /preconceived misconceptions attached to it - that  
makes me not want to share about it. Do you have any advice?

-R: I think that you should not back down because of a stigma. I think this gives you more reason to stand up to it because you are living it. A lot of the people making these stigma's haven't ever had your illness, so how would they know? I think this gives you more reason to share. Just because someone thinks you look healthy doesn't mean that you are. I have my good and bad days. When I share I like to use this phrase that I made up, "You might not agree with everything I have done, or tried out, or what I write about, but it's my journey & that is the very reason why it's interesting."

What type of haters have you received? 

-R: Honestly, my biggest critic is myself. I know that people might be annoyed if I post something something on social media that seems to be calling attention to me or my disease, but no one has ever called me out on it. I find sometimes that my close friends and family get frustrated if I can't do things that they expect me to be able to like drive, or go somewhere, but they never blame me or hate on me.

If so, how do you respond or how would you?

-R: For my friends and family, I have learned to make it very clear that I have to take it hour by hour. Sometimes I can do something but I cannot be sure until the last minute, and I tell them that. Also if I have plans to visit someone or vise versa, I always let them know that it is my intention to do so unless I feel bad, and I can't control how my body feels. As for myself, I have learned more than ever that I need to be more spiritual and make God the center of my life. I do yoga, and go to therapy to talk about my chronic illness. But if I had haters online, I would not respond to them; it's a waste of time that will just lead to frusteration or tears. Sometimes people will turn around and actually see that you are going through a hard time, and they change their attitude towards you. Regardless, whatever we do in life, people will find a reason to turn it bad. Just brush that off. It's like the earlier years in my life. I would run to read the runway reviews. Sometimes people didn't like my designs and that's their opinion, and there certainly intitled to it. I don't run after them and explain why they should like them or ask them why they don't. It is what it is.

Brenda ended the conversation with this note:

 "I'm so glad you consider my questions heaven-sent. I think the topics in my questions are very relevant for both you and I."

Here are some links that Brenda Provided that are helpful for those who are caretakers, or friends/family of someone that is chronically ill:

http://restministries.com/2012/05/ways-to-encourage/

http://www.bandbacktogether.com/how-to-help-a-friend-with-chronic-illness/

This is a video my husband made about me and my illness: CSO and Autoimmune Disease

We are so fortunate to have reached our fundraising goal, to help pay off past and present (mostly) medical bills. If you would like to help us reach past this goal, please go to It's Times Like These We Learn 2 Live Again.

FASHION 

Before we get to the September Issue, I want to share a new idea that we have made to spread CSO awareness. It's called "I MAKE MY OWN FASHION RULES. I WEAR WHITE AFTER LABOR DAY TO SUPPORT CHRONIC OSTEOMYELITIS." Please send your photos to me by text, e-mail, FB, or twitter. Then dare your friends to do the same. The purpose is to have a conversation starter and spread the word about this and other illnesses. If you want to be apart of TEAM RACHELLE on FB, please let me know. Here is a picture of my mom kicking the foundation off with a bang! 

My mom wearing white after Labor Day to spread awareness for CSO.

The September issue's are out, and if you are a fashion lover you know what this means. We get to see all the trends that hit the runway for fall and winter 2014/2015. I received 10 free magazines in the mail that I received with a purchase online.

I'm already writing a breakdown of Trends and the Pantone color report on my next blog. It will also feature my my #1 picks for the season!

Biggest Trends: Game of Thrones inspired clothing, natural fibers, color, 90's, boots, nail art. 
Tip: Express has stepped it up this season with clothes that are savvy for reasonable prices. Especially if you get the coupons! I'm very impressed with the Express Fall/Winter Look Book!

FASHION ALERT TO SAVE MONEY AND WEAR NEW THINGS: It became apparent to me that there is an easy way for us ladies to save money, not spend money, and stay fashionable. What is it? To swap clothes, shoes, accessories, etc... I found that it is easiest with me to do this with my mom because I trust her with my garments, and vise versa. We happen to be about the same size so it works out great. Ladies consider this! Even if you can't share clothes, there is a good chance you can swap accessories like purses, scarfs, shoes, jewelry, outwear, hats, gloves, etc... and it will look like you have a whole new wardrobe. Every time I wear my mom's stuff, people think my outfit is new. This very apparent epiphany came to me because of my medical situation right now, I'm unfortunately unable to design my own clothes, nor do I have the funds to buy them. I think this is the perfect alternative to update your wardrobe! I decided to put my mom to the task. I borrowed some pieces from her closet and wore them, and then asked her to wear them (I never let her see how I put my outfits together), so we have 2 completely different ideas and age perspectives. These are clothing pieces that you can wear in your 20's to your 60's.

This is not a column about about age, or a who wore it better, (even though you might have those thoughts in mind). But this is Fashion Fun For Free! It's I Share With You, and You Share With Me. Here is a picture of our first experiment. 

THIS GIRL

The season of my life calls for me to recognize all the big and small reasons to be happy. Here is a example of a small thing called to my attention from "The Book of Awesome" by Neil Pasricha (author of 1000awesomethings.com). 

I love this experience every time it happens because it makes me laugh and forget about life's troubles.

It is, Catching somebody singing in their car and sharing a laugh with them:

 "It's late, it's quiet, and you're stuck at a red light. Casually, you glance to your left and notice a muted explosion of furious head bopping, furrowed eyebrows, and silent wiling inside, as the driver rocks out alone and in the zone. 

Ane there's just something worth smiling about when you observe that passionate display of pure private pleasure only a few feet away. Suddenly you're the producer in the booth watching your struggling artist hit the high notes in their tight sound chamber on wheels. Yes, they've tried for years to get clean and make it off the streets, but now you're finally smelling a hit... and a future.

So maybe you bop along for a few beats, catch the same song on your radio or lock eyes with them for a secondhand share a warm and heartfelt laugh. Maybe you feel a tiny flip in your heart as you connect with a total stranger for a few fleeting seconds. And maybe it makes you a tiny bit happier and maybe you smile a tiny bit more." 

I think that's awesome. I'm definitely the driver who locks eyes with the person singing and smiles. I am sometimes the one who's caught singing and breaking out dance moves at a stop light, thinking no one was watching. Life is full of surprises each and everyday, you never know what make the tiny flip in your heart.

Thank You For Being Patient

I promised that I would post a blog on Sunday and thank you so much for being patient. Sadly I am postponing it... Recently, they just switched my medication for my CSO. It's making me very tired, and a little out of it. The blog that I will be writing next is the most personal blog that I've ever written. I want to be in my normal state of mind a give you my true thoughts. I want to be very correct about what I say, and how I say it. I would assume that this medication will adjust to my body within about 48 more hours. With that being said, I think my blog post will be up very soon.

The blog will be a interview from a friend who sent me a long list of of questions about my disease, internet hate, pain, coping, and my perspective. The cool thing, (well it's not cool) but it's a very interesting set of questions considering, she is also going through her own battle with pain, and disease. I will be writing back to her, for you all to read because I think her questions are important, and they are questions that I have not answered yet that you might be wondering too. You might find them interesting or helpful. The first time she reads my answers will on here, when I post it.

I want you to know that means it will be extremely authentic, because I am writing it for someone that is looking for hope and answers. She is also in the fight of her life. She also said I could release her name, and that she now has the courage to start talking to the world about her disease, and even start up her own blog. I will put up her blog link then, so you can get to know her better.

My answers might not sit right with you, they might comfort you, you may be able to relate or not; but above anything the answers are my truth and my perspective. I look forward to sharing them with you and I'm very sorry that the date has been pushed back. Learn more about my journey with CSO, lupus, and sjogren's diesease on indiegogo http://igg.me/at/rachellebriton1. Please go to this link if you are curious and read my husbands perspective, if you can contribute too that would help so much. I can't tell you how much every dollar is a blessing!!

I look forward to writing an epic blog for people to relate to and understand that they are not alone for years to come! I want to invite you into my heart and my mind. It will be up very soon. Can't wait!

XoxoX,
        Rachelle

I BELIEVE IN A BETTER WAY

THIS GIRL

 You might not agree with everything I have done, or tried out, or 

what I write about. 

But, it's my journey & that is the very reason why it interesting. 

WOW, I can't believe I've been writing my blog successfully now for over a year. I can't believe I wrote that (above) back when I was completely mentally out of it. I find what I wrote above may be one of the very most important things I have ever written, and I wanted to re-post that. I also thought this piece of writing is critical to people that just started reading and wanted to get my perspective. 

First of all, a word of caution:

My blog might not be written perfectly, actually I guarantee that it will have mistakes. Sometimes my medication clouds up my thinking, therefore I might confuse you. So, please let me know of any major errors.

My intentions are to create a personal blog that have a range of feelings that you can relate to. You might feel happy, hopeful, curious, sad, educated, excited, perplexed, challenged, and maybe you'll find something that you can share with others and believe in.

I don't want my blog to be a "woe is me" type of journal. I am not a victim, I am a warrior and I'm fighting this war. I hope that you will join in and support me in any way you can, and first you can start by simply reading my blog and sharing it with others. 

People always ask how they can help in other ways. The best thing you can do for me is to pray for strength, healing, and protection. Other simple ways are random phone calls, donations, a visit to my place, maybe a snow cone lol, or a little note that lifts my spirit, sharing your story with me, sharing my story with others who are in the same place that I may be able to help them...and the list could go on and on. This section on giving isn't really about how you can only give to me, it's about how you can give to anyone going through something difficult, and like my mom always says, "Try and Enlighten Two Hearts Today".

FASHION

Cool story... in April I was asked to be a part of this secret project I knew nothing about by my friend Larissa Ness, who I sometimes style and do costume design for. She is an amazing musician and if you haven't heard of her yet, I'm sure you will hear her soon, because she just started performing in a new band called THE MRS.

Larissa texted me like the night before she wanted me to come meet her at the mall, which is not normally like her. When it comes to getting something together for styling, she normally has a very comprehensive picture in her head, and knows what she wants from head to toe. So she was being very vague, very unlike her, so I wasn't really sure what I was coming to help her with. In the end she was the one helping me.

Larissa and her Band The Mrs. put together the theory to the test to see how women feel about themselves in the mirror! And they made a song and a music video called "I'm enough." I actually found this in my dance studio yesterday

2

(which I have been working out to get my strength up for my next surgery... point being, is this epidemic is happening everywhere in Austin, from April until August and I'm sure beyond).

I thought I was going to style Larissa Ness for a film, but instead I was the one being filmed! This tricky/genius experiment put together by The Mrs. (A Fabulous All Girl's Austin Rock Band) Larissa, & Bravo's Flipping Out Star, Jenni Pulos. Jenni, was the Fairy God Mother & voice that tricked me into talking directly to her through an "automated mirror." It's really cool to see her talk to me behind the scenes, in fact I couldn't see her at all (even though we were only a few feet away). It's interesting to see each of the band members, and Jenni's reactions to what I said! I'm featured about 3:20 minutes into this video. This was filmed less than 2 months after my jaw surgery (February '14). Watch the whole thing b/c it's awesome... I literally cried when I saw it! Love you Larissa Ness! Thank you for thinking of me & making me a part of this amazing project. Things like this change the world! 

Continue to spread your good word through your amazing musical talents & huge heart. Larissa You Literally Rock! You are an inspiration to me, and many many more! Let's keep spreading the good word!!!

Love You First

THIS GIRL 

I am inspired by how the truth of the following quote applies to us all:

"It is unfortunate when someone fails us, but it isn't as bad as when we fail ourselves. The minute we make a mistake or fall short, we begin to condemn ourselves. How could we have been so dumb, so inept, so careless? We are victims by our own mouths. It is too easy to make a habit of thinking we are second-rate, not quite equal with others. If we say it enough times, we think it, and it all feeds down into our hearts to surface again when we don't need it. Who can love us if we do not love ourselves? Who will build us up if we are busy tearing us down? Confidence is winning over self–not others. But we have to stir up the gift that is within us, see that we can appreciate all the small things we can do well. We can only be what we give ourselves power to be."

These words are mine and they are true.--- Chief Meninock 
     
From the book "A Cherokee Feast of Days: Daily Meditations" by Joyce Sequichie Hifler 

Click the link above to get this wonderful book at Barnes and Nobles new or used. I checked the prices today and you can buy this book gently used for as low as $1.99 at Barnes and Nobles. It's well worth the couple dollars. 


FASHION 


In case you were wondering, I love CoCo Chanel. My dream yacht was actually hers. I would loved to have purchased it one day when I become a big time fashion designer; however, it was sunk by the real "Wolf on Wall street". Moving on, here is a collage of some of my favorite quotes~

Also, I'm very proud of recently winning the #LashOut competition between all Harper's Bazaar Style Ambassadors from around the U.S. 


Thank you for everyone who supported my most recent photo shoot shown on my previous blog post (it was a little scary because it featured my new jaw). The photo shoot of me from the last post, were the photos for the project I submitted to HARPERS BAZAAR and Physicians Formula (and they have no idea that my jaw isn't real made me feel a little more secure)! Anyways, they liked the photos and said that I had the most creative theme and great social media connections! I am so grateful!

I still can't believe it but I won the #LashOut Challenge!

Here is a pic of the goodies they sent me from NYC!

Featuring my new purse from Aldo Rise, a custom Harpers Bazaar iPhone case, blush, lipstick, bronzer, and a tray of eye shadows from Physicians Formula 

For my fashion lovers out there! Check out my next blog about my summer fashion tricks and tips! I'm will be explaining the ways that I keep my style cool with a low budget!


PAIN

I want to express my struggles, especially my mental struggles. I've always been a little anxious but when I was diagnosed with Chronic Slerosing Osteomyelitis, a whole new level of anxiety came. For about 3 years, I've been diagnosed with general anxiety disorder, and it has changed my life in a very bad way. Currently, I'm struggling with anxiety, because I know I have another trip to Miami, a bone graft, and have my mouth wired shut for a month or two. If you've never had an anxiety attack, I will explain what happens to me when I get one. At first I feel like I am overwhelmed, then I feel like I can't breath, I feel scared like a child, I have really negative thoughts like I'm going to die. 

Lot's of people have anxiety with or without a chronic illness, or injury. Read the facts and know that you are not alone!

• Anxiety disorders are the most common mental illness in the U.S., affecting 40 million adults in the United States age 18 and older (18% of U.S. population).

• Anxiety disorders are highly treatable, yet only about one-third of those suffering receive treatment.

• Anxiety disorders cost the U.S. more than $42 billion a year, almost one-third of the country's $148 billion total mental health bill, according to "The Economic Burden of Anxiety Disorders," a study commissioned by ADAA (The Journal of Clinical Psychiatry,60(7), July 1999).

• More than $22.84 billion of those costs are associated with the repeated use of health care services; people with anxiety disorders seek relief for symptoms that mimic physical illnesses.

• People with an anxiety disorder are three to five times more likely to go to the doctor and six times more likely to be hospitalized for psychiatric disorders than those who do not suffer from anxiety disorders.

• Anxiety disorders develop from a complex set of risk factors, including genetics, brain chemistry, personality, and life events.

I found this info at http://www.adaa.org/about-adaa/press-room/facts-statistics.

I've decided to addressed this anxiety issue with myself and others head on and I chosen to take action. Here are some things I am doing that I suggest you try because they are helping me a lot. When attempting to prevent or stop an anxiety attack, I use oils, try to get a message, do daily meditations, pray, write a journal, talk to a group that has similar issues, and have back up anxiety medication from my doctor just incase of emergency.

My favorite oils are from Aromatherapy Associates my personal favorite is called Support Breathe Essence (just click a click away if you want it too). I was given this as a gift before my 1st major surgery in Miami from a massage therapist at the Viceroy Spa (the massage was a wonderful gift from my mom because she knew I wasn't going to be able to put my face in the massage head rest for the foreseeable future.  I hope I can get a message sometime before my (hopefully final surgery) in August, it is a great way to relax the night before surgery!

However, for people that don't have problems going to get a massage, I would definitely recommend going to get them frequently to ease your anxiety and eliminate toxins. My favorite spa's in Austin are Milk and Honey, and Aziz Spa. I have to give it to my favorite spa on the West Coast in Santa Barbara, California The Bacara Spa, and on the East Coast, in Miami, Florida Viceroy Spa. 

I also do daily meditations with an iPhone app called "Meditations" (Mindvalley Creations Inc.). The app has Morning Purpose and Positivity, Energy Booster, Centering, Alpha Beats, and Good Night meditations all in one App.

Furthermore, I do Hypnosis every night before bed, or if I am in the middle of an anxiety attack. The apps I use are all free as I need to save up to pay off the medical debt and travel expenses from previous surgeries (honestly, even if I had the money, why would I buy them when I can get them for free)– you can always buy an upgrade for a small price, if you want to though. My favorite apps for hypnosis are "End Anxiety" (Surf City Apps LLC.), "Sleep Well" (Surf City Apps LLC.), "Calm" (Calm.com), and "Sleep Like a Baby" (Mindifi).

I pray several times a day, and then at night with my husband. This allows us to get everything off our chests and give everything to our higher power, The Father, The Son, and The Holy Spirit. This is what truly calms me the most. 

Also, I write in a free iPhone app called "Transform Your Life" (Maks and Pasha). It's awesome because it gives you daily assignments like, "Today, look for those moments in which you can trade no for a yes."

Breathing is also very important to me. 

Without shame, I can tell you that I have anxiety medication in case of emergency. I've had roughly three hospital visits from anxiety attacks as a result of developing a rash, turning red, and having the inability to breathe. I've even had an ER doctor order an Epinephrine shot, but he then realized it was an anxiety attack and chose to sedate me instead. Thank God!

Keep this in mind, the medication is my I.C.E. (In Case of Emergency). Personally, if I am in a situation where I'm having an anxiety attack, I will pray first, then I will try all the things I suggested above. However, if I'm having an  all out "mind war", and I can't fight it the noise in my mind, I will take the medication. I keep it on me because, I like knowing it's there if I need it, not because I know I'm going to need it or take it. I try to use all the other options first before I have to take a pill.

Please leave any other suggestions on anxiety below. I know I would benefit from them and so would others.