My Dystonia Story and How $5 Can Make All the Difference

Many of you may wonder about my personal experience with living with Cervical Dystonia is like. I’d say there are no words to describe what I’ve been through, but I’m going to try. 

First off, Cervical Dystonia is a neurological movement disorder characterized by tremors and muscle spasms in the neck and shoulder area. These spasms happen 24/7, 365 days a year. I like to describe it as me doing the rowing machine at the gym all day. With constant tremors and spasms can come pain, headaches, migraines, insomnia, and anxiety. Personally, I developed severe chronic pain, headaches, insomnia, and anxiety after my Dystonia diagnosis. More on that later. 

I wasn’t diagnosed until I was 18 but my doctors and I believe strongly that I was born with Dystonia since I had many problems with my neck as a child. When I hit puberty and started experiencing stress, the Cervical Dystonia would come in episodes then, ten years ago, I woke up with my right shoulder inflamed. My life as I knew it changed forever. My late grandfather most likely had Cervical Dystonia. We shared the same symptoms but he was misdiagnosed. He managed the spasms in much of the way I do: medications, keeping a low stress life, and lots of naps. He was originally from Tennessee and lived life slower, which I think helped. I’m working on taking a leaf from his book. 

After I was diagnosed, I received care from a terrible neurologist and had to wear a foam neck brace during an Indian summer in the city because he gave me too many injections in my neck of Botox. The idea is the Botox is supposed to paralyze the muscles, just as the case when others use it for wrinkles. This doctor now works in a day spa giving Botox treatments. 

Moving on. I found a much better neurologist. The next round of injections were better. I wasn’t slowing down with work or school and I was slowly coming to terms with these changes. I felt the pain from the spasms but now I’d describe it more as an annoyance. Less than a year after waking up with a funky shoulder, I developed unbearable pain. At first, it was nerve pain. A few years later, it switched to being dull pain in my neck. Now it’s a combination of both. I think my pain was much worse than it should have been because I was totally under-treated and not believed for many years. I get treatment for pain now, but it barely takes the edge off. I still live in pain. 

I also have spasms that are so terrible at times that it develops into a headache. Those headache leave me fighting to get through the day or resting in bed. Most nights I struggle to fall asleep. I even have anxiety about falling asleep. It’s no easy feat for someone whose symptoms change to get the right dose of medication, supplements, and timing. I can easily say that it takes a sacrifice to the gods to fall asleep some nights. My anxiety is not a constant problem, but when my pain is unmanageable and I’ve tried everything, I get that racing feeling. The feeling that I’m so overwhelmed, I don’t know what to do to solve this problem, and that the last place I want to go is the ER where they treat me like a terrible person because I don’t have a gun shot wound. When this happens, I try to watch a really good series on HBO or Showtime and remind myself that my only job at that moment is to breathe. I also think about the fact that some of the best doctors in the San Francisco, UCSF, and Stanford can’t solve this pain, then I can’t blame myself for lack of trying…or at all. So, I ride out the night and call my doctors and summon the strength to travel over 2 hours one way to see them. Then the cycle continues. 

This is where you come in. I need help stopping the cycle for me and others like me who need more treatment options and a cure for Dystonia. It is truly a terrible monster of a condition that has no mercy and will swallow me whole if I let it. Luckily, I advocate for myself, fight back for better care, seek second opinions and think the word “no” is just waiting to be a “yes.” Others are not so lucky. The monster has gotten them. They have tried every treatment. Some treatments have helped me, but my case is a very rare gem. I’m not a candidate for DBS or any other surgery to ease my Dystonia or pain. I hate taking medication and I’m prone to side effects. 

I want to live a better life than I do today. I am grateful for the life I have, but long for how much better it could be. 

Today, you can help by donating $5 for the cure for Dystonia. For the price of a that fancy latte or less than a matinee movie ticket, you can make a difference. Every dollar helps. Go to the and donate today. Then, share this story and the website on social media with this hashtag: #5dollarCure4Dystonia. I’ll be forever grateful.Thank you,

Thank you,


When You’ve Reached the End of Your Rope…

When you’ve done all that you can do, when you tried every treatment under the sun, when you’ve gone to appointment after appointment, when you’ve seen countless doctors, when you fight for your healthcare, when your insurance screws up, when you are down to your last drop of hope, when you feel left out, when your tired, when your sick of being sick, when you’ve spent years of your life focused on getting better,…when is enough, enough?
When my head is dizzy from the endless cycle of being chronically ill, I wonder when all this work will pay off. Personally, my condition is like a roller coaster: full of ups and downs and totally unpredictable. I wonder what is next. I wonder how it got this bad. I wonder where “the best years of my life” went. 

A year ago, I was in less pain. Today, my arthritis seems to be considerably worse. I don’t understand how I’m even allowed to live in insurmountable pain. Why aren’t other treatment options available? To top it off, I’m somehow expected to pretend like everything is ok, dress well, and get picked on. Then, I somehow how to pull it all together and work one day? 

If I can’t, how can I afford basic expenses, let alone my dream of traveling? Young adults like me are at a huge disadvantage financially because we have not been able to work for consistent periods. How can we ever save for a house or a car? How can we even have an emergency fund? I think about all the years I wish I could’ve worked and where my career might be today and it just kills me. My career, until this point, has been my health. 

No one thinks to really check on me. People with chronic pain don’t get flowers, cards, or any thought-out well wishes. Why? I’m guessing because it makes others uncomfortable. Do you want to know what makes me uncomfortable? Thinking that no one cares whether I’m living or simply surviving. In case you are wondering, I’m surviving today. 

Yes, it’s thanksgiving. Everyone is posting cute photos of family, babies, and food. Then many shoppers will gear up for Back Friday to fight over material items. Let me just bring this into perspective: there are millions of people living in chronic pain just like me here in the US. I can almost guarantee the only thing they want for Christmas is for the pain to go away. 

The truth is I really don’t know what I’m thankful for this year. I try to be positive, to not complain, to not bring anyone down, but I’m not going to sugar coat it: I’m hurting. I’m hurting and there is something you can do. It’s simple really. All I really need is more support from my family, friends and the community to feel like I’m not alone in this. I don’t need pity. I need help getting through. I need help tying a knot at the end of my rope so I can hold on. 

1 Year Shoe Shopping Ban

I’m sure you are thinking I must be crazy for even attempting a year of no buying shoes. I sure thought I was. I didn’t think I could do it. The rules were simple: don’t shop for shoes in stores or online and don’t buy any new shoes. I also made it a general rule to avoid walking past shoes in stores when I was doing an errand for my family or shopping for a gift. Also, I could be gifted shoes, but couldn’t use that as a loophole to buy shoes.

Now that you know the details, let me share something with you: I already completed this challange. I do swear that I did not buy a single shoe for 13 months. That’s 398 days! You can ask any of my family members: my mom, dad, sister, and boyfriend can all give you their word that I didn’t purchase any new high heeled beauties.

I started back in February 2015 with a goal of doing a year. Wait, that makes it should akin to negotiating jail time, which is what it felt like at first. No really, I started the ban after one day I ordered a pair of shoes to be delivered to my home and then subsequently ordered 2 other pairs to be delivered to Austin when I was on vacation. Ordering the shoes didn’t phase me. When I was in high school and college, I always acquired a steady stream of clothes, accessories, and shoes. These items are classified as “non-consumables”, or things that couldn’t be used up like soap or toothpaste. This was normal to me and this was the first time in my life where I understood I seriously had an addiction, or at least the beginnings of one. If I didn’t, I envisioned myself ending up with a huge home full of stuff I never used and thousands in debt (the opposite of my dream).

At the same time, I happened to be watching the show Intervention after taking an Abnormal Psychology class. I was hooked on the show. All jokes aside, I’m in no way comparing my shoe love to a serious eating disorder or drug addiction. Intervention had got me thinking. If I had a problem, I needed to address it. So, I researched what others did under similar circumstances and came up with a plan. I told any family and friends about my shoe ban. This helped keep me accountable and made my challange more real. I even posted about the ban on social media. I told my therapist and members of a National Allience on Mental Illness (NAMI) support group I attend.

I experienced a whole shift in how I looked at my love for shoes. If the tinge of wanting to buy a pair hit, I asked myself why I needed them. Most of the time, it was because they were beautiful or the classic “but I don’t have that style in black.” Seriously, how many black pairs of shoes could a gal own? Apparently, ALL THE SHOES left to my own devices. Turns out I only needed a few. I also learned that I could treat the shoes in the store like works or art-lovely to look at, but highly impractical and unneccisary. I still have quite the collection and I’m constantly re-evaluating whether what I own is functional and is in line with my current style. The most common question I get asked is: how many pairs do you own? I always answer that I own somewhere around 45 and I honestly don’t obsess over the number, but I just got rid of X more pairs!

When I finished the shoe ban, the first thing I did was do my happy dance. Then, I continued the ban. It was another month before I bought a pair in over a year: a black (lol) pair of New Moto Ankle Booties by Rebecca Taylor for $45 that were originally $595. I had 4 pairs of suede booties, but no simple leather ones. The second was a pair of Used Silk Red Kitten Heels with a wraparound strap by Anthropologie for $55 that were originally $150. Then, I ditched my red flats that were always too big on me along with 3 other pairs.

What on Earth do I do with all those unwanted shoes? Personally, I tend to go through my favorite shoes quickly from wearing them constantly, so some end up being donated or put in the trash. The ones that are in wearable or good condition, I give to friends who call “dibs” on an item in my closet should I ever get rid of it or I sell them. I used my money from these sells to buy things I actually need, gifts, and for books for school.

In all, I’m very happy that I went on the ban. I actually re-started my shoe ban in May. I have another ban I’m enacting, but more on that later.

If you would like help starting your own ban, leave a comment. I can help you start your own ban, help decide what shoes to keep/purge, and answer additional questions you may have. Let me know if you have ever done anything similar.

Shop wisely,



If you or someone you know needs help recovering from an additction, please call 1-800-622-HELP. Alternatively, call your insurance to find out what benefits are offered to you or simply tell a loved one you need help.




Here is What Happened When I Had Sex with My Boyfriend, Whenever he Wanted, For A Week

I found an article about a woman doing the same experiment. I happened to keep it open on my internet browser ripe for my boyfriend to discover it. It was entitled ‘For One Week I Decided to Have Sex Whenever He Wanted (Here’s what happened)’. I hadn’t read it and he was interested, so we both read it. You can find the original article that inspired this blog post here: After a few fleeting moments of consideration about my many disabilities, my chronic pain and my challenges when it comes to sexual experimentation, I tossed all worry aside and proposed we do the same experiment. The only caveat: I had to be allowed to write about every personal detail. And post it to my blog. Where my grandmother could possibly read it. Hi Grandma Phyllis! He didn’t have to fear rejection for one week and in return I get to document it. I consider it my contribution to the conversation of the sexuality of disabled persons. I want to show how I can push the perceived social and cultural limits as a women who is chronically ill. Oh, and have tons of amazing sex. 

Day One: Wednesday would have been any other night with me staying at his place. For me, this means traveling to another state via Southwest Airlines since I’m in a long distance relationship, but our routine is pretty normal: he comes home from work, we cook dinner, run errands, listen to music, engage in an actual ‘Netflix and chill’ session, cuddle and occasionally one of us initiates sexy time. Having sex usually revolves around my pain levels along with my mood. However, tonight was the night we stumbled upon the article mentioned above. Boom. Instant anti-rejection with VIP access pass for two please. Ok, so maybe the pass was more for him, but more on that later. 

Right after we read the article and agreed on the terms, we started making out. Like the type of making out that you used to do when you were in high school. Then we jumped in the deep end. We started talking about sex more openly. He asked me what I liked and what I wanted more of. I asked him much of the same and other things that I don’t care to admit. It was like being questioned by a detective. I had no idea he had that many questions! I had no idea that he felt rejection on a regular basis even though we have been dating for six years. I didn’t realize how it must feel to get brushed off when he initiated sex. I put myself in his shoes and really thought about how that must weigh on you. I hadn’t even considered that my man could feel rejected even though we’re are in a committed long-term relationship. This had me thinking to all the times I said I couldn’t because I didn’t feel well or wasn’t in the mood. How did that make him feel?

Day Two: I did work from his place that day. Normally I wouldn’t put any effort into being primped for when he came home because he loves me for me, but I wanted to give this experiment a real shot. So, I straightened up, put on a sexy robe, and some perfume and waited for him to come him. He was exited about coming home, but didn’t expect to see me in bed waiting for him. We were happily intimate, showered, and made dinner. That romp in the bedroom lifted my mood and brought us closer together. Now that we were more open about things, there weren’t any rules. No stress, just vacation sex.

Day Three: This day we decided to stay in and make dinner. It was Friday but staying in felt like just what we needed. We watched Aquarius and hung out mostly. Before dinner, things got steamy again.

Days Four & Five: I had an unbelievably horrid pain spike these days and it was wise of my man to take care of me and find other ways to be intimate rather than partaking in anything that would make my pain worse.

Day Six: This day we went out to eat. After, we didn’t just come home and go to bed. We tried new things. I’ll just leave it at that.

Day Seven: I can’t recall whether or not we did the deed, but, by this time, I felt so much more connected. Colors seemed brighter, flowers smelled even more delightful, and I was reminded just how truly wonderful life is with the right person.

Would you ever consider doing this experiment? I think it’s something we will be repeating in the future. I hope this has encouraged you to open up more to your partner. So, start the conversation. Be bold.

I Made Myself a Priority and Something Magical Happened

     About a year ago, I decided to make myself my most important priority. My relationships, school, designing, blogging, advocating, and socializing all had to file behind. My ultimate goal is to improve my health and well-being. When I started this journey, I always thought of myself as treading water in the middle of the ocean and starting to slip under the water just minutes before the Coastguard arrived. I didn’t want that feeling hanging over my head. I wanted to tread above water on a beautiful day during a leisurely swim, not picture myself drowning in an emergency situation.
The first thing I did was to scale back social events because they weren’t making me happy at the time. Next, I limited doctor’s appointments and other appointments to only those that were absolutely necessary. Another key element I did and continue to do is delegate. I always handled managing my health myself. It was too big of a burden to bear, so I asked loved ones for support, transportation, help with phone calls, picking up my prescriptions, and handed off the task of grocery shopping. Cutting out all the noise allowed me to focus in on the work that needed to be done.

I made health decisions based on what my ‘gut’ told me to do and no longer spent days researching and reading medical journals. Sure, a little research was fine, but freeing myself from late-night Google searches was exhilarating.

I also made sure to spend time doing other things besides improving my health. I spent time with family and the occasional friend or two. I went to holiday gatherings. I took (and currently take) classes in Graphic Design to learn a new skill-set. Taking my mind off of my goals is a good practice to keep up. It also helps me combat boredom and stress.

I asked for help. This is different from delegating for me. I ask for help when I’m having trying moments of pain, caught up in the daily grind of managing my schedule, and simply need someone to talk to. I’m so very lucky to have many caring individuals in my life whom I reach out to when I feel like my world is crumbling to bits. I talk it out, brainstorm a solution to the source of the problem, and move on. In particularly trying times, I call friends until someone picks up. Talking to someone who understands my situation eases the burden. 

I made a bold move. I decided to go from a Paleo diet to one based on my genetics, blood type, urinalysis, measurements, and ancestry. It’s called epigenetics and it is essentially thought to turn ‘off’ the genes that are causing harm and turn ‘on’ the good genes to heal. I basically have a list of superfoods, neutral foods, and avoid foods. I’m not allergic to the avoid foods, but they aren’t thought to help my body. I’m really strict and stick to my superfoods and neutral foods. This has helped jumpstart the process of healing my gut and healing from all the prescription medications I have taken over the years.

I started exercising every day. Before, I made it a goal to workout four times a week, but I was never consistent. Now, I workout every single day. I’m not doing anything extreme. I’ve started really small and have worked up to what I can do now. I haven’t been able to do a push up since my attempts during Water Polo conditioning in high school. I started doing them on the wall, then on a chair, kneeling, and so on. Now, I can do ten *real* push-ups in a row and continue on with a different version of mountain climbers where you put one foot up with the corresponding hand and tilt your hips downward. Fancy, I know! I was able to teach my super duper athletic boyfriend a new exercise for the first time in, well, ever.

I put more emphasis in Reiki, Myofascial Release, and my diet. I’m now a certified Level II Reiki Practitioner. I give myself Reiki when needed and also attend a weekly healing circle. My insurance now covers Myofascial Release, and I go much more often. I’m going every other week. I’m going to try every week to see if that makes a positive difference. I give myself small goals within the scope of my diet. I’m currently doing a 90 day tea challenge where I’m having green tea in the morning and herbal tea at night. 

I see what else needs work. Next on the agenda is my sleep hygiene. As you can tell by what time I’m posting this, I’m a bit of a night owl. I’ve gotten better, but there is progress to be made. 

I choose who I surround myself with carefully. I feed of positive energy while my pain is worsened by the latter. 

I forgive myself for the pain. I repeat mantras to let go of anything that ails me. 

Finally, don’t sweat the small stuff. Are you even going to remember what you are upset about right now in three, five, or ten years time?

The proof is in the pudding. I’m starting to get fewer Xeomin Injections every time those three months roll around. Not too shabby if I do say so myself.

There is still more work to be done. I truly believe that healing comes only when you are ready. There is no ‘secret’ fix. The answer is within. 

P.S.-You should talk to your doctor about any changes you are planning on making. Every individual is different. Please know that I’m cheering for each and every one of you! Know that you are worthy of improvement and don’t ever give up. 


Hoping on Hope


Today I’m feeling like the healthcare system has failed me. Eight years after inflammation appeared on my right shoulder, dozens of prescriptions, different doctors, countless nurse practitioners, various nurses, medical students learning about my rare case, an array of Emergency Rooms, several procedures such as: spinal injections, MRIs, CTs, Botox injections, and nerve blocks, alternative treatments and, at last count, I have 10 specialists on speed dial and I have not found relief. It’s really a dizzying thought when I think of it. I’ve spend so much of my time, emotional energy, and money to have a better quality of life despite my chronic illness. Since I could remember, I have been searching for an answer. First, it was a diagnosis. Then, it was a doctor. After that, the process to find specialists. Soon after, a proper ‘cocktail’ of medication. Establishing a new low-stress and healthful lifestyle came next. Now, I’m on the hunt to improve my quality of life. I forgot to mention all the other tasks of being a chronically ill patient: billing, keeping proper finals, making, rescheduling, and canceling appointments, coordinating transportation and lodging to those appointments, and stacks of paperwork that need to be done. Needless to say, managing my health has become it’s own job in and of itself. I joke that I could hire-out a part-time personal assistant for all this madness. This is why I consider anyone who works in healthcare and can keep their sanity as some kind of saint and superhero combination. There is actually truth to the joke: all of this could be considered a part-time job. Maybe one day I can afford to hire it out. My real hope is that there will be no need.

Today, I’m not feeling very hopeful. I’m just filled with questions. How is epigenetics going to stop my chronic pain in its tracks? Am I ever going to find a doctor that will look at the whole picture, instead of a list of my symptoms? Am I ever going to be treated in the way I need by our obviously broken healthcare system? Why am I continuously under treated for my pain? 

Those are just a few of the questions swirling around in my brain. I find it difficult to focus on anything else. I’m constantly researching, reading, and watching Ted Talks to keep up on the latest in healthcare. My biggest fear is that I will be searching my whole life: wasting my precious time, energy, and money. My biggest question of all: where do I go from here? What is the next step?

I hope this year brings more answers than questions. For now, I will cling to my last bit of hope.

Holiday Reflections

I used to love holidays. The anticipation, the all-day celebrations, the food, the desserts, the music, the movies, the traveling, and visiting family. I loved wrapping presents, shopping, and making gifts too. I loved seeing the storefront displays and decorations. Now, I’m starting to see the holidays for what they are.

I’m not a cynic; I’m actually far from it. There is just something about the holidays that resembles a stale gingerbread house. It might be the carefully manufactured season, the fact that everyone eats whatever the hell they want, the thoughtless giving, the debt, or the forced happiness. What about all of the ‘shoulds’: you should really get so-and-so a gift, you should get more stocking stuffers for everyone, you should make sure every present is wrapped to perfection, and every bow should match the wrapping paper. When does the madness end? What is this doing to our psyche? I wish the holidays weren’t about presents, who has the best decorations, or consumerism. I wish they were about helping those in need and about appreciating all that we have. Most of all, I wish they were about spending quality time with family where we are honest and listen to one another. 

I have many thoughts about the piles of presents that I will admit I receive. I mostly think about how I would feel if the pile shrank to one. I would love to only receive one present. Nothing would delight me more than to see my mom stress less about the holiday shopping. That in and of itself would be a gift. After the unwrapping is done, I always dread having to make room for all of my new things anyway. Instead, I would like to see my family only spend what they can afford. In lieu of gifts, I would like to donate the gifts to families in our community who wouldn’t otherwise have a Christmas or donate to my favorite charity (hint, hint…DMRF).

There are new things that I have come to love about the holidays. I love the feeling of renewed hope that surrounds Christmas. No matter how bleak my symptoms or how bad my chronic pain is, the glow of the christmas tree offers a flicker of hope. I love reconnecting with friends and family. I also enjoy wiping the preverbal slate clean every January 1st.

This year, I did something different: after setting my usual budget, I stopped listening to all the ‘shoulds’ or partaking in the fake happiness. I started to be honest with myself. Guess what? I found that I wasn’t in much of the Christmas spirit this year and that it was perfectly okay to feel this way. I dare to admit I never watched a holiday movie in its entirety. I didn’t frost a single sugar cookie or listen to one christmas carol. No, the world did not come to an end. I’m happy to report that not a single person was disappointed because I “should” have given them more stoking stuffers or otherwise. 

However, there are some things about the holidays that I wish that were easier. I wish that I could have a symptom-free day with family. Instead, I tend to spend as much time as I can at a function instead of pacing myself. Last year, I burst into tears on the sofa on Christmas Eve simply because the pain was too much to bear. This year it was much better. I started out all dressed up, then slipped out to change into something more comfortable. I think each year will be a learning process. I also think not stressing about the holidays being ‘perfect’ is key for anyone with chronic illness. For me, this will mean one day out shopping, mostly online shopping, minimal decorations, minimal wrapping, and having to pick and choose which holiday parties I go to.