Thursday, July 2, 2015

Just going to leave this here...

My WONDERFUL friend, Maggie, wrote an open letter to a music festival and the city of Atlanta regarding an experience she and I had. I am so grateful to be surrounded by people that not only accept the realities of disabilities, but advocate for me and encourage me to spread of awareness.

"Hello! My name is Maggie and this is my beautiful best friend Rachael.

Rachael and I have been friends for years and one of the main things that connects us is our mutual love for the music of Ryan Adams. She loves music, art, and life in general: she is one of the sweetest, most enthusiastic and fun people that I've ever met. She also has invisible illnesses, even though they do not define her. She has had multiple brain surgeries, she suffers from Ehlers-Dahnlos Syndrome and dislocates easily, and she therefore uses a wheelchair if she has to be out for very long. Rachael lives outside of Atlanta, and so we were both excited to discover our hero headlining at the Shaky Knees festival, right after she turned 21 years old. We were also excited to find out that Shaky Knees was wheelchair-accessible. Upon doing some research, we discovered there was a raised area for handicapped seating. Parking was a little harder to figure out, but according to the festival site, there were nearby parking garages. We bought tickets, I drove down and picked up Rachael and her chair, and we made the 15-mile venture into downtown Atlanta. What followed was quite the adventure.

I want everyone to know, right off the bat, that I am not writing this to bash the Shaky Knees festival. Most of our experience was excellent and I would certainly consider returning to the festival again. However, I had a very eye-opening trip yesterday; as an able-bodied person, I realized for the first time a lot of the issues that face those in the disabled community, and I wanted to share my experience in hopes that festival-goers and promoters might take notice of the challenges a handicapped person can be faced with when attending an event.

We drove into the city and parked in the nearest parking garage we could find. (Maybe we could have parked a little closer, but downtown Atlanta is fairly hard to navigate for first-timers, especially during a big event.) Immediately upon making it out onto the sidewalk, we discovered this was going to be harder than we thought. The Atlanta sidewalks leading to the festival were certainly not in the greatest condition, and the potholes, cracks, and splits posed quite the challenge while moving Rachael in her chair. This was my first time taking her somewhere like this and therefore I had never thought that a seemingly small set of sidewalk cracks can be insurmountable for someone who is wheelchair-bound. Fortunately she is able to get out of the chair for short periods of time, as she had to several times to avoid obstacles and the sidewalks randomly ending. This is not on any festival, but rather the city of Atlanta (and cities in general): please consider updating your sidewalks to make it easier for disabled folks to get around. Safe passage to and from your destination is a right of anyone visiting your city.

When Rachael and I arrived at the front gate, we were amazed to discover that, though the festival claimed to be wheelchair-accessible, her chair would not fit through the entry gate. Frustrated, Rachael walked through the gate with me holding her chair directly behind her (not an easy task); amazed, I asked the front gate staff if there was an easier way I could take her in or out. One of the ticket-takers responded, “technically, you can't bring a chair in without someone in it.” I was taken aback, incredulous at his rude attitude toward my friend and her chair. Rachael spoke up, explaining that she had had to get out of the chair in order for it to fit through the gate. The gentleman then had the nerve to actually ask her why she needed the wheelchair. Rachael explained her illnesses; by this point, several staff members had gathered around and were staring and she and I were both getting upset. The ticket-taker let us go without answering any of my questions about getting her in and out more easily.

As we made our way through the festival, I was shocked that, even after asking a couple more staff members (they were rather hard to find), no one could answer any of my questions. I also found it hard to believe that the only “accessibility” for several of the sidewalks were plywood ramps that did not even fit closely enough to the sidewalk that I could get her wheelchair up them without the assistance of helpful passersby. When we reached the portable restrooms, there was not even a ramp of any sort making the bathrooms accessible.

By this time, we had been walking for over an hour; once I got Rachael set up in the ADA seating area, got us water, and got settled in, both she and I were exhausted. However, I was thoroughly disgusted by the challenges we had faced and the way my friend was treated. I spoke to the ADA staff and explained our situation again; they could not help me, but they were extremely gracious about contacting the person that could.

Now, fortunately there is a good ending to this story. For starters, the ADA area was set up very well; there was a sturdy ramp for easy access, it was raised enough that we could still see everything happening on the stage, there was plenty of room for everyone, and the staff were the most helpful that I had met thus far. A few minutes later, a superior came to meet me. I explained our situation once again- at this point, I just wanted to make my concerns known and find a better way to get Rachael out as she was already tired. The gentleman immediately apologized and invited me to walk with him to figure out an easier way for us to leave the festival.

I cannot say enough good things about both the gentleman that helped me, and the policeman and woman he introduced me to. They arranged for me to move my car to the first aid area; after Rachael and I saw Ryan Adams, I would be able to wheel her straight from ADA to the car. Everyone I spoke to after that point was incredibly gracious and helpful. I made the confusing walk back to my car. When I had trouble finding the entry to the first aid area, the superior and the police were an enormous help. I received numerous apologies and was invited to follow up with the superior via email.

I made it back to the ADA area just in time and the rest of our day was an incredible success. The festival sound and video screens were so well-done that we felt we could see and hear everything, even from the back of the crowd. There is nothing that can quite describe the emotional high of being with someone you care about, seeing your musical hero put on such a fantastic performance. It was also Rachael's first time seeing him, and she loved it; we sang, laughed, and smiled until our faces hurt. Some other nice festival-goers helped me get Rachael over a couple more plywood ramps and then back to the car. As we drove out of Atlanta, we were both tired and elated; we also had a discussion about our challenging day that led to me writing all of this down.

Again, I cannot say enough good things about the superior and the police that helped me figure our issues out. I can't say enough good things about the handicapped-accessible area, about the sound, lighting, and video screens, and of course about Ryan Adams. However, I hope my experience raises some questions, not only about accessibility at events, but also about how we treat people with disabilities, especially those that we cannot see. I would also like to bring up some improvements that I think could be made.

Festival promoters, if you are going to claim that your festival is wheelchair-accessible, you cannot just throw out a couple of cheap plywood ramps and call it a day. Accessibility is about safe, nearby parking; easy entry into the festival and access into the stages; easy access to areas such as merchandise, food, drinks, and restrooms; and, most importantly, not being made to feel differently because you are a person with a disability trying to enjoy an event. Though it was resolved, the way my friend was treated was wrong on so many levels. Please take the time to better educate your staff on how to properly treat the handicapped community. Under no circumstances should someone have to explain their disability in order to gain access to something that is supposed to be wheelchair-accessible. Please take the time to set aside proper parking and proper entrances for the handicapped. Please ensure that your sidewalks have correct ramps so people in wheelchairs can get on and off the sidewalk and access the restrooms, merchandise tables, and food and beverage vendors. Please remember that music, at its core, is about community: it brings people together from all walks of life, all types of health, all kinds of different places. No matter if people are able-bodied or wheelchair-bound, they deserve the same experience.

Again, I did not write this message to call out the Shaky Knees festival. Actually, I want to thank the festival, not only for allowing Rachael and me the opportunity to see our hero perform, but for opening my eyes to a problem I was previously unaware of. I'd like to thank the staff that helped us, the folks we met in the handicapped area, and Ryan Adams for bringing us together. I'd also like to thank anyone who is reading this, and I hope you will consider how we, as a community of music lovers, can work to make our events more accessible for everyone. Thank you for your time.


(Note: I have reached out to the gentleman that helped me at the festival, the festival itself, and the Atlanta newspaper; if I hear back from any of them, I will update with their responses as I'd be very interested in starting a dialogue with them.)"

Monday, April 20, 2015

April Sundays full of April showers! // WEEK REVIEW


This spring has been so beautiful! Just so many rainy days, my poor head :(! 

So last Monday I had my shunt adjusted again (that makes 3 times since Christmas!) and so far there have been a lot of ups and downs. Overall though, I'm thinking it's been positive. I just hope it continues to get better!

Tuesday, I went to the chiropractor and just took it easy. 

Wednesday we ate at a little french cafe and went Dollar Tree shoppping for some organizational tools as I have taken on some serious spring cleaning. My goal is to have the whole house organized by the end of the year. We'll see how that goes. :) 

I enacted my spring cleaning mission by tackling the kitchen. I really should have taken a before picture, but I got so excited that I forgot. I do have after pics though. 

Then we went out to eat with my husband's family.

Friday i finished up organizing the food pantry, and cooked dinner. I felt moderately okay. 

Saturday was a long day, we took some friends to the train station, went to ikea and then down past ATL to visit a fellow EDSer. Spoons well spent. :) 
I wouldn't have been able to handle the ride without my go to spoonie necessary: blu frog! Also, my salonpas pain patch and comfy zebra pillow. :) 

Sunday was a great blessing to me, I always love seeing my church family but this week was super special because I didn't know that I was going to make it last week. We were able to get some fold out chairs to make it easier to sit through church. The pews are very hard to sit on, and my church family is so understanding and open. I just love em :) both my sister and I had a hard time, and by the end of the day (which is when we finally get home, since it is an hour and 45 minutes one way), we just collapsed into bed. 

Here I am on the way home...I didn't mean to make a nasty face, or look ticked off, I think it was just the pain and exhaustion. Plus, boredom in the car = spoonie selfies :) Overall great day! 

Thursday, April 9, 2015

Beauty on a Budget series: #2 Wet n Wild Lipsticks

My husband and I recently celebrated our second anniversary. We went up into the great Smokey Mountains and stayed at a delightful little bed and breakfast. Whilst on our travels, we stopped into Walmart for a few necessities. Naturally, I wandered over to the makeup aisle and perused a bit, looking to treat myself. I purchased two lipsticks, as I've been wanting to expand my collection for a while and I've never tried Wet n Wild lip products before. I've heard a lot of good things about it, from youtube videos and beauty blogs. I also got a Starbucks iced coffee, of course! So, on to my review! :)
Walmart goodies 3/25/15
The first lipstick is the Wet n Wild MegaLast Lip Color in 917b Cinnamon Spice. This is what it looks like:
This lipstick's packaging is okay, nothing special. You get what you pay for, nothing more, nothing less. The color is a nice dark red with a raisin-y/brown undertone. 
this is how the color shows up on me.

It's matte, and honestly, the lasting power is pretty incredible. We're talking ALL DAY last. I am thoroughly impressed with the application and staying power. It was a bit difficult to perfect the application without a lip liner (I was in a moving car and without any other makeup products). And unlike some other (cheaper) brands, I really didn't feel like my lips were getting too scaly and dry. I don't know if anyone else has had that problem, but I've experienced that blah dry feeling before. It's still a relatively new product, so I am excited to keep using it.

So, to wrap up.

  • SUPER affordable, at an average availability of $2.00 (you can purchase it through the link above).
  • doesn't have a bad smell, doesn't have a smell at all.
  • lasts forever, without drying out your lips.
  • easy application, will be even easier with a liner.
  • beautifully pigmented matte color. (Looks amazing with a light gloss over it!)

  • packaging is less than stellar.

to summarize, I rate this product at a cool 4/5. (It would be higher if I liked the color more; I'm just not 100% sold on the way it looks against my skin...I don't know. We'll see.) All in all, this is a really solid lipstick.

Next lipstick is the Wet n Wild Silk Finish in 514A Cherry Frost which is a bright, beautiful red shimmer that has a pink-ish tint to it. "Cherry Frost" is the perfect name for this somewhat ambitious color. Here's what it looks like:

This one is very similar to the one above, but honestly I can't choose a favorite. Especially when it comes to application and lasting power. The MegaLast may actually last a bit longer, but this one still holds it own very well. As far as a favorite color, I don't know, I *might* be leaning towards this one; because I really like having the shimmer without needing to apply gloss. Honestly this is just a great glamorous color, red carpet style! 

  • a really CUTE, bright and shiny color. perfect for summer.
  • again, cheap!! Around the same price as the other one. (purchase link above)
  • lasting power is good.
  • this one actually has a nice subtle smell.
  • easy application

  • cheap packaging. Honestly I think this one is even more rickety and just plain cheap plastic.
overall score: 4.5/5 (slightly higher because I favor the color a bit more)

I've really been impressed with these lip colors and I'm excited to keep using them! 

*I am not receiving any compensation for this review from Wet n Wild or any of their affiliates. 

Tuesday, March 24, 2015

Beauty on a Budget series: #1 My favorite drugstore concealer

So I've decided to do something a little different, and review some of my favorite budget-friendly beauty products. Starting with...CONCEALER. *dramatic music plays*

Concealer is a big deal for me; I have really dark circles, dark eyelids, basically I look like a zombie in the mornings. Finding something inexpensive that will cure me of my walking dead appearance has been difficult. Enter Rimmel's Match Perfection 2 in 1 Concealer.* I think what makes this product so great (especially for dark circles and redness) is that it has a highlighter in it as well as good pigmented concealer. All the while having a light enough consistency and weight that it doesn't feel like you are caking on a heavy load of makeup under your eyes. At just under $5.00 I would highly suggest this to anyone, especially those who struggle with some of the same issues I do.

One caveat is that if you have an enraged pimple and you want to make it magically disappear, or just discreetly cover it, you may run into problems throughout the day. Depending on your skin type it may start to dry up and actually draw more attention to the thing that you're trying to take attention away from. For me, when I have a mad spot I try not to dump a bunch of stuff on it and enrage it further. However, there is a limit. When I am about to attend a big event or something, I want it gone. So I dump stuff on it. With this product, less is more. Especially with fresh red pimples, and even scabs. Scars, discoloration and dark circles are really what this baby is made for.


  • Affordable, easy to find.
  • Good weight and consistency.
  • One tube lasts FOREVER, even with multiple every day use. 
  • Great for discoloration, puffiness, redness and brightening eyes. 
  • Nice applicator, brush doesn't shed and actually works for it's intended purpose. 

  • Can be bad for an active pimple.
  • May be too thick for some skin types.

In summation: I rate this product at a nice 4.5/5

*I am not receiving any compensation for this review from Rimmel or any of it's affiliates.

Saturday, January 10, 2015

Life Lessons

 I have become fond of the idea of writing down my thoughts and experiences. If only I acted on that desire, rather than dreaming about what I would say and never actually doing anything about it. However, tonight I have decided to act. Not because I want a popular blog or huge following, because I really just want to talk. I am far too talkative and am definitely an over-sharer in day to day life, so why not channel that into my own little corner of the internet? Exactly!

I don't expect to be regular at this, I know I am a procrastinator and will likely go for long periods without writing; but with the way my life is going lately, I really feel a stronger urge to write. About my chronic illnesses, surgeries, procedures, family, and all of the struggles that go along with that. I am, after all, still very young and have so many life lessons still ahead of me. I am excited to chronicle them.

me right before surgery
Lesson #1: You Can Be Grumpy When You're In Pain*
Let it go. Stop feeling guilty about being snippy, then in turn become more frustrated and start this vicious cycle of over apologizing and tensing up over the slightest things - only to worsen your pain and situation rather than find productive ways to help your pain. (*However, you are NOT allowed to maliciously attack anyone, especially those who are trying to help you.) There really is a difference between that and simply not feeling well, and not being in the best mood. God has blessed me with a very understanding and patient husband that does not take my ill mood personally, instead he knows what it means and says to me directly, "you are in pain, have you done anything to help this pain? Is there anything I can do to help you?" which makes it easy for me to, in turn, check myself and my actions and answer him accordingly. It is sinful of me to answer him with anything other than gratitude and respect.

I am about 2 weeks post operation (this makes surgery #5) and this is a lesson that I am learning repeatedly. Lord willing I will only get better at responding with grace rather than misdirected annoyance. I say misdirected because while it is one thing to be annoyed at your pain, it is another (and more grievous thing entirely) to direct said annoyance onto loved ones. If I am brutally honest with myself, I will admit that I do this way more than I should. 
For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18
Please, dear Lord, forgive me for my impatience and help me to endure my struggles with joy, grace and patience. Help me as I strive to be like you.  
But thou, O Lord, art a God full of compassion, and gracious, long suffering, and plenteous in mercy and truth. Psalm 86:15 

Friday, May 10, 2013

Order Of The Dimensions by Irene Helenowski

This is a very belated review for a scifi/fantasy type novel sent to me by the author. Part of the reason why it is so late is because even after reading the surprisingly short book, I am finding it difficult to describe my exact feelings. However, I'll do my best.

The first few chapters (which are also relatively short) start out intriguing enough, introducing the main character. She is a well to do woman, a professor of Science at the university where things are taking place. There are a scandalizing lack of descriptions and details of people, places, and things. One of my main critiques is that while I has half way through and getting very much into the plot, I realized that I had no idea what most of these characters looked like! I couldn't picture them. I was being told, very plainly, step by step what was taking place rather than shown with a creative use of words. Not to say that the plot itself wasn't creative. Days and weeks after reading it I thought about it. Different dimensions. However, I would've liked more explanations. How was that possible? I read another reviewer say something about too much science... I disagree, I would have liked more. Even if the basis of it was complete fiction. I think it just would have been easier to grasp.

I really enjoyed Antov's complexities, he was by far the deepest and most evolved character. I would've liked to see some of that same inner turmoil and humanity with the lead female, her husband and others.

Overall, the author did a wonderful job with creating this plot. Some of the execution could have been better, but I would definitely be interested in reading her later works.