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According to the National Organization for Rare Disorders (NORD) there are over 7,000 identified rare diseases, and 25-30 million Americans impacted by them. This year, NORD is asking the rare disease community to “show your stripes” to increase awareness of rare disease issues and how they affect people’s daily lives.

I must have considered publishing a post regarding my rare disease a billion times, but I could never build up the courage to do so. I would write, re-write, save it as a draft for months on end before permanently deleting it from the queue. I have actually never told anyone that I have it, partly because I have never been diagnosed by a doctor (more to do with my unwillingness to bring it up during my visits, and partly because I had always been in denial. I would think of excuses to validate why I would do these things. All right, enough stalling. Here we go:

When I was around 14-15 years old, I found myself with my fingers twirling my hair until I only had one hair that just “felt right” and I’d pull it off then drop it on the floor/couch/pillow/desk. During the summer I spent hours watching TV on the couch, mindlessly pulling hair from the top of my head. This is when my mom began to notice so much hair on the floor. I would make up the excuse of my hair falling out due to stress. It was believable at first: AP and Honors student, 2-3 sports, you get the picture.

My parents actually never pushed for me to tell my doctor or seek help. I have not asked them why they didn’t push for that, but I think it has more to do with a cultural aspect because research has shown that Latinos are less likely to seek mental health treatment. You can read more about Latinos and mental health here – useful information for those OTs going into mental health with diverse populations.

I’m not too sure when I began to notice that what I was doing wasn’t normal, I just remember my hairstyle changing dramatically from one year to the next in high school with the hopes of attempting to hide the different lengths of my hair and any bald spots. I remember Googling what I was experiencing and finally found something: Trichotillomania.

Trichotillomania (trick-o-till-o-may-nee-uh) (TTM or “trich”), also known as hair pulling disorder, is characterized by the repetitive pulling out of one’s hair. Trichotillomania is one of a group of behaviors known as body-focused repetitive behaviors (BFRBs), self-grooming behaviors in which individuals pull, pick, scrape, or bite their hair, skin, or nails, resulting in damage to the body.

Research indicates that about 1 or 2 in 50 people experience trichotillomania in their lifetime. It usually begins in late childhood/early puberty. In childhood, it occurs about equally in boys and girls. By adulthood, 80-90% of reported cases are women. Hair pulling varies greatly in its severity, location on the body, and response to treatment. Without treatment, trichotillomania tends to be a chronic condition; that may come and go throughout a lifetime. – The TLC Foundation for Body-Focused Repetitive Behaviors

During high school I avoided going swimming, going for haircuts, getting too close to people, and I spent a ridiculous amount of time making my hair lay a certain way when I was about to go workout so no one would notice the short spots while I was running.

During undergrad, I realized that the more stressed or anxious I felt, the stronger the urges I would feel to pull. Over the years, I read more about it and tried different things to reduce the pulling. Knowing that graduate school would be stressful, I invested in a spinner ring to keep my hands busy. It actually worked for me in reducing the amount I was pulling. During the mental health semester in my graduate OT program, I read more about trichotillomania…but I was disappointed with the limited amount of information available in the textbooks. I began to go on multiple websites to learn as much as I could and to see what techniques I could try to learn to fight the urges. Many articles mentioned CBT and DBT, two treatment strategies I had gone over in school and began to implement into my daily routines. I still was not ready to talk to anyone about it (embarrassment and shame are common in the trich population, which is why it goes undiagnosed and proper treatment isn’t obtained.)

After finishing the didactic aspect of my graduate program, I noticed I was pulling less and less. Then there was, what I call a “relapse” when I was studying for the NBCOT. I have become more aware of when I feel the urge, and I try to keep my hands busy to avoid pulling. It is still a work in progress, but I am so happy to say that I have made progress and my hair has started growing and showing less breakage…also, going to a hair salon is not so bad anymore. I actually found an amazing hair stylist while I was in school in Connecticut. I would make the 1+ hour drive to her because of her experience working with clients with trichotillomania. I was sad to leave Connecticut because I felt so comfortable with her. I am happy to say I found someone to cut my hair just as amazing in Arizona, though! I’ll put their website information below for anyone interested. My rare disease doesn’t hold me back from doing as much as before, but I still hate to go swimming because my hair is not how I would like it to be and it is obvious that some parts are much shorter than others. I’ve also learned to not let it limit, or dictate, my relationships with people. My hair stylists have also gotten to know me, which is so important and have helped layer my hair enough to allow my hair growth process to be easier and a much better experience for me.

Every stripe has a story. I have one of the more than 7,000 rare diseases. My stripes are rare. I have dealt with trichotillomania since I was 14 years old. Join me in recognizing Rare Disease Day on February 28, 2019 – a day that is important to me and the 25-30 million Americans impacted by rare diseases.

To read about other people’s experiences with trichotillomania and the challenges this rare disease brings, please read this articlethis one, oh and this one. The third one is my personal favorite because I also just started my curly hair journey and was happy to see a similar story to mine.

For more information on trichotillomania, please visit the following websites:
Mayo Clinic
Mental Health America
The TLC Foundation for Body-Focused Repetitive Behaviors

Here are the salons I have personal experience with and would 100% recommend to others:
AZ Hair Salon

CT Hair Salon

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The holidays are among us and you’re almost done with your list…except you notice you still don’t know what to get for the OT, COTA, or student in your life. You’re torn between something handy, something fun, or something functional. Here’s a list of some of the items I have found helpful as both a student and new practitioner and some of the ones I wish I would have had to ease the transition from graduate school to the real world.

  1. Informative Clipboard – Light-weight aluminum, foldable clipboard. Not only does it fold to be able to fit in your scrub pockets and carry secure patient information, but it also has detailed information making it a handy quick reference day-to-day guide. I especially love this clipboard because of the lamination over the information, making it last much longer than other clipboards I have used.
  2. OT Reference Pocket Guide – For OTs by an OT! If you know the population they work with, or even if their clinical rotation will be in adult rehab, this pocket guide can come in handy. I would have loved to have this during my clinical rotation!This

    General Adult Rehab Set of Occupational Therapy Quick Reference cards is comprised of 16 double-sided pages of reference material relevant to individuals studying or working within the field of Occupational Therapy with a focus on adult rehabilitation. Pages are color coded to coincide with different topic areas to facilitate the “quick” aspect of this quick reference item. Whereas many other quick reference products on the market are targeted at a general medical audience, this product was designed by a licensed Occupational Therapist (OT) and caters to the distinct “OT Mindset.”

  3. More Cowbelt – Custom gait belts and more! Whether you’re looking for a wipe-able, easy to clean gait belt, or a punny t-shirt, More Cowbelt is a great website to order from. What makes this company stand out to me is that whenever you purchase a gait belt, a portion is donated to the American Macular Degeneration Foundation!
  4. Superpower Coffee Mug – Great for those that need a little boost to start their morning! You can find different quotes on Etsy :
  5. OT Popsocket Grip – Makes phones easier to hold, which is a must for those of us with smaller hands. The rate I have dropped my phone has decreased so much, which is great because that means no unexpected expenses. Trust me. The new grad/new practitioner in your life will appreciate that. You can pair it with a Popsocket Car Mount to make hands-free while on the road. I found it especially useful when navigating my way to new areas during my clinicals. Having the phone somewhere where I could easily see the map made my commute much better and safer.
  6. Time Marker Water Bottle – You can purchase this one specifically, or you can go on Etsy to have one like this made with a different quote. I found myself dehydrated multiple times during one of my rotations because it was so fast-paced. I needed a way to be more accountable for the amount of water I was drinking. It is so easy to forget to drink and stay hydrated because I’m constantly running around, but a water bottle like this has made it so much easier for me to keep track of the amount of water I drink throughout the day.
  7. Canvas Tote Bag – Heavy duty tote bag to make it easy to carry all OT-things. From textbooks, to activity items, it keeps everything from rolling all over the car, or being scattered all over the house! You can even have it personalized with iron-on material, or if you know someone who works wonders with a Cricut machine!
  8. OT Badge Holder – Who doesn’t love a fun badge holder?!

    This BadgeBloom features an adorable exclusive T-Rex character who’s had his arms modified with pincher claws to help make his daily life a bot easier. His OT’s have helped him to achieve his goals! This design is covered in a mylar plastic coating, which means it can be easily wiped clean and sanitized.

  9. OT and COTA Decor – Everyone needs a little reminder of why they decided to go into this incredible career every now and then. You can download and print this on cardstock, or other paper, and frame it. To add a special touch, you can have people write or sign on the margins meaningful qualities that have helped the person come as far as they have.
  10. Complete Goniometer Set + Reflex Hammer + Measuring Tape – Pretty much everything we need in one box! You’d be surprised how often goniometers and measuring tapes go missing! I tend to carry my own in my canvas tote bag to make sure I have everything to ensure I’m prepared with every patient on my schedule.

    I hope this list made it easier to narrow down your options for the OTs and COTAs in your life. Keep in mind I just did the top 10 I personally found helpful. Feel free to leave any comments on gift ideas I may have left out! 

Happy Holidays!
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A couple of years ago I wrote a post about good books for OT students to read, so I decided it was time to compile a short list of movies that any healthcare students and practitioners can enjoy. The list is compiled of a few movies that have been personally recommended to me and I know there are so many others. Feel free to add any movies you’ve enjoyed! 

The ones I have watched are in pink and I’ve noted the ones available on Netflix or Hulu.  

28 Days

A hard-drinking New York journalist takes her reputation as the life and soul of the party too far when she knocks over her sister’s wedding cake and crashes the bridal limousine. When a court orders her into rehab for a month, she initially refuses, but eventually she begins to take her substance abuse seriously.

A Beautiful Mind (Netflix)

A human drama inspired by events in the life of John Forbes Nash Jr., and in part based on the biography “A Beautiful Mind” by Sylvia Nasar. From the heights of notoriety to the depths of depravity, John Forbes Nash Jr. experienced it all. A mathematical genius, he made an astonishing discovery early in his career and stood on the brink of international acclaim. But the handsome and arrogant Nash soon found himself on a painful and harrowing journey of self-discovery.

Brain on Fire (Netflix)

Susannah Cahalan, an up-and-coming journalist at the New York Post becomes plagued by voices in her head and seizures. As weeks progress and Susannah quickly moves deeper into insanity, her behaviors shift from violence to catatonia. After a series of tantrums, misdiagnoses, and a lengthy hospital stay, a doctor’s last-minute intervention enables him to give her a diagnosis and a chance to rebuild her life

Me Before You (Hulu)

Young and quirky Louisa “Lou” Clark (Emilia Clarke) moves from one job to the next to help her family make ends meet. Her cheerful attitude is put to the test when she becomes a caregiver for Will Traynor (Sam Claflin), a wealthy young banker left paralyzed from an accident two years earlier. Will’s cynical outlook starts to change when Louisa shows him that life is worth living. As their bond deepens, their lives and hearts change in ways neither one could have imagined.

My Beautiful Broken Brain (Netflix)

A profoundly personal voyage into the complexity, fragility and wonder of the human brain, after Lotje Sodderland miraculously survives a hemorrhagic stroke and finds herself starting again in an alien world, bereft of language and logic.

This feature documentary takes us on a genre-twisting tale that is by turns excruciating and exquisite – from the devastating consequences of a first-time neurological experiment, through to the extraordinary revelations of her altered sensory perception.

Patch Adams

After struggling with depression in a mental hospital, Hunter “Patch” Adams (Robin Williams) decides he wants to become a doctor. He enrolls at Virginia Medical University but is disillusioned by the school’s clinical perspective on patient care. With the aid of a wealthy friend, Adams opens his own medical clinic for those without insurance. He forms a deep bond with fellow medical student Carin Fisher (Monica Potter) before a tragedy causes Adams to re-evaluate his approach.

Regarding Henry

An unscrupulous corporate lawyer, Henry Turner (Harrison Ford) will do whatever it takes to win a case, and treats his family with the same degree of ruthlessness. After Henry gets caught in the middle of a robbery and is shot in the head, he wakes from a coma to find that he has amnesia and can’t even remember how to do the simplest of tasks. As he recovers and relearns how to function, Henry reveals a much kinder and more thoughtful personality, much to the surprise of his family and friends.

Rocket Science

This film tells the story of Hal Hefner, a fifteen-year-old with a stutter who decides to join his school’s debate team when he develops a crush on its star member, and addresses the themes of coming of age, sexuality, and finding one’s voice.

Silver Linings Playbook

Patrizio “Pat” Solitano, Jr., a man with bipolar disorder who is released from a psychiatric hospital and moves back in with his parents. Determined to win back his estranged wife, Pat meets recently widowed Tiffany Maxwell who offers to help him get his wife back if he enters a dance competition with her. The two become closer as they train and Pat, his father, and Tiffany examine their relationships with each other as they cope with their problems.

Still Alice

Dr. Alice Howland is a renowned linguistics professor at Columbia University. When words begin to escape her and she starts becoming lost on her daily jogs, Alice must come face-to-face with a devastating diagnosis: early-onset Alzheimer’s disease. As the once-vibrant woman struggles to hang on to her sense of self for as long as possible, Alice’s three grown children must watch helplessly as their mother disappears more and more with each passing day.

Stronger (Hulu)

Jeff Bauman loses both of his legs when two bombs explode during the Boston Marathon on April 15, 2013. After regaining consciousness in the hospital, Jeff is able to help law enforcement identify one of the suspects, but his own battle is just beginning. With unwavering support from his family and girlfriend, Bauman embarks on a long and heroic journey to physical and emotional rehabilitation.

The Diving Bell and the Butterfly

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It has been a week since I saw those amazing words across my screen:

Congratulations on passing your exam!

Now that I have let it sink in, I can finally publish this post. I know the NBCOT is a huge step into our careers in the occupational therapy field, which makes it that much more nerve-racking. Basically the period leading up to the exam is stressful, as well as the period leading up to the results being posted…no matter how long you spent studying. In honoring the reasons I began this blog two years ago, which was to be candid about my experiences in my OT journey, I will be discussing the very real feelings of uncertainty I felt throughout studying, as well as the study tactics I used and materials I relied on. 
Before I get to the specifics of what I did to prepare, I want everyone to remember that not everyone studies the same and that’s perfectly okay. Only you know what works best for you, and only you know what you need to do to get through this. Comparing your study schedule/approach to everyone else is only going to overwhelm you.

Materials I Used
  • AOTA NBCOT Exam Prep
  • NBCOT OTR Pocket PrepApp I downloaded onto my iPad, which was great for on-the-go. Contains 500 questions with detailed rationales.
  • NBCOT Study Tools (I purchased a practice test two weeks before the exam.)
  • TherapyEd
  • Occupational Therapy Genius – Great app for visual learners! I used the anatomy section for reviewing hand and UE information. It is also an awesome tool to use during fieldwork.
  • OT Miri
    • Website  – Becoming a member grants you access to resources, study guides, videos, and discussion forums
    • YouTube

Timeline/Schedule

I initially gave myself six weeks to study, but after one week I knew that I would go crazy having to wait so long. I decided to take 4-5 weeks to prepare.
I spent the first week taking practice exams to get an idea of what my weaker topics were. I did not want to spend too much time reviewing topics I felt comfortable with and was performing well in, so I decided to turn my focus to my weaker areas. I would read through a topic or two each day and then take 2-3 practice exams, roughly 20-50 questions each.

Eventually, I began taking longer practice exams with multiple topics together to better simulate the actual exam. The last couple of weeks I was basically just watching OT Miri and taking as many practice exams and reading as many answer rationales as I could. I was reviewing/studying for about 3-5 hours a day. I found myself unable to focus if I tried to go longer than that.

Week 1: Practice exams to identify strengths and weaknesses. Read 1-2 PDFs/day on weaker topics with practice exams based on weak topics only.
My weak areas: hand and UE, frames of reference and approaches, mental health, return to work rehabilitation, and driving. 

Week 2: Continue reading 2-3 PDFs/day on weaker topics with practice exams based on weak topics only. Watch OT Miri after reading PDF. Read/skim through PDFs on stronger topic. Begin taking clinical simulation exams (2-5 scenarios/day).

Week 3: Re-evaluate which topics are still weak (scores below 75%) by taking a complete simulated test. Read PDFs on weaker topics and skim through information on stronger topics. Begin taking random, 75- to 150- question practice tests. Continue with OT Miri and clinical simulations.

Week 4: Focus on weak topics only* and skim through PDFs. Watch/listen to OT Miri throughout the day. Take practice questions at random
* by the beginning of week 4, I had about 2-3 weak areas (scoring below 75%) and just needed to fine tune a few things

Candid Time
About two weeks into my studying, I ended up fracturing my right foot playing soccer…and I also found out that the soonest date available to take the NBCOT near me was in mid-October. Mid-October. An additional eight weeks on top of the 4-5 I had originally planned for. So not only did I fracture my foot, which was keeping me from any physical activity to cope with my stress, I had to wait that much longer to take the exam that was already giving me so much anxiety. I ended up checking available dates in Arizona and was happy to see early September dates in Phoenix. Lucky for me, my boyfriend, R, lives near Phoenix, so it ended up working out just fine. I scheduled my exam and I made the 5-hour drive to Arizona about two weeks before my exam and studied while he was at school. Also, when I initially fractured my foot, I became extremely unmotivated. I stopped doing anything NBCOT related for about a week. Overall, I spent four weeks studying and reviewing for the NBCOT.

The week leading up to the exam was going too fast for me to handle. I kept questioning myself and even considered changing the date. I actually had a couple of breakdowns that last week and kept telling R, and myself, I was not ready. The day before the exam I had a complete meltdown. Basically Randall from This is Us sitting against the wall in his office the night of Kevin’s show (if you don’t watch This is Us, I highly recommend it.) I was doing well in the practice exams, but there was that fear of not passing that just made me question everything I knew.

I took the exam the next day and left feeling defeated. I had been told by others that was exactly how they felt, but it did not make me feel any better. I decided to let myself feel what I needed to feel at that time because my feelings were valid. I spent the next week trying to take my mind off the results. I completed puzzles, read books for leisure, and caught up on Netflix shows. I also worked on my resume and browsed for jobs. I was not actively applying for a job just yet only because I was still in a walking boot and I did not feel comfortable working with patients when I was not at 100%.

Now that I know I passed, I’m focusing on getting my license, which is a whole other ordeal, and allowing my foot to completely heal. But one step at a time, and I’ve already overcome the biggest step that was in the way of starting my career.

I know I listed the materials I used above, but I also want to add some other materials that others have used that helped them:

I hope this helps those of you preparing for the NBCOT feel a little better. I know I cannot make the stress and anxiety go away, but I hope my story makes you realize you are not alone. If you want to read more success stories of passing the boards, OT Miri’s website has plenty. There is also a Facebook group in which people post study tips and their own stories of passing the boards that made me feel better throughout the process.

Good luck!
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