Tag Archives: Dysautonomia

Learning: A Beautiful Privilege

The following is my submission to the 2015 Fall CourseHorse Learner’s Scholarship, coursehorse.com/scholarship  I intend to write more about my experience in regaining health very soon – so much in my life has changed, and I am so grateful! This essay gives a small glimpse of my story.

As a high school freshman, I balanced a full roster of honors classes and extracurricular activities, and my future looked incredibly bright. On the morning of June 5, 2006, that all changed. I fainted in the shower that morning, and my life suddenly went from fast-paced and busy to me being bed bound much of the time, passing out up to 16 times a day. I spent two years going from doctor to doctor before being diagnosed with Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia, at the Mayo Clinic. Medicine helped a little, but I was still a sliver of my former self. I spent my days feeling like a giant anvil was pushing me into the ground when I tried to stand or sit up. I was so dizzy, and the exhaustion I experienced was like nothing I had ever felt. I was so tired it was physically painful, and not even 23 straight hours of sleep could put a dent in it.

I spent my high school years struggling with these serious health issues. Getting through a full day of class became impossible because I struggled to remain upright for so many hours, and it felt like a thick fog had enveloped my brain. My previously easy honors classes became so difficult for me. Every assignment took so much longer to complete, and remembering concepts for tests felt like a nightmare. I missed more days of school than days I attended, but I made sure to stay in contact with my teachers and get my work sent home. I had piles and piles of makeup work that left me so overwhelmed I would cry. Graduating high school while dealing with feeling so sick all the time felt like an insurmountable task. But I knew my education was important, so I tried to persist. In 2009, I graduated on time with the rest of my class, which I consider my greatest achievement to date.

Going through my own struggles opened my eyes to the struggles other people were facing, and I became passionate about helping others. I dreamed of becoming a doctor, but had to turn down a full ride scholarship to a school’s biochemistry program due to my poor health. This broke my heart. Then, while attending community college, I accepted the fact that medical school would be too rigorous of a career path for me. I began pursuing a degree in nursing. Attending the necessary science classes was such a struggle – sitting up for long periods of time left me so exhausted I could often barely leave my bed for days afterwards. However, I finished my prerequisites and was accepted to nursing school. My brief joy turned to devastation when I met with the department to discuss my health and was told that nursing was not a safe or viable option for me with my limitations. This caused me to rethink everything. I knew I was passionate about helping people who dealt with serious health issues, and I wanted a way to explore the psychological side of long-term health issues while being one on one with patients. I realized I wanted to counsel those with chronic illness. I intend to get my master’s degree in social work, eventually becoming a Licensed Clinical Social worker, in order to do this.

I have worked so hard to get to where I am, and I am eager to keep working. Due to my health issues, I’ve had to take school at a slower pace, but my entire self has been dedicated to it because I didn’t have the energy for anything else. In the past year, however, I have experienced incredible health improvements. I feel so fortunate to be able to attend school full time now. Feeling like I have regained a high level of cognitive functioning is absolutely wonderful! For years, I could barely retain the knowledge I got in the classroom, and learning was incredibly difficult. It was hard to focus on lectures when I was struggling to just sit up and make it through my classes. I spent many, many hours doing homework from bed and wondering if I would ever be able to make something of myself. Now, I am thriving! My first semester studying social work has been life changing, and life affirming. I love being able to attend classes and learning from my professor – my time in school is always the highlight of my day! The things I am learning are not only improving my awareness of the world as a whole and my critical thinking skills, but they are improving me as a person. The human brain is an incredible thing, and the ability to use it is a gift. To me, learning is a privilege. The ability to sit in a classroom and gain knowledge is a beautiful, powerful thing. I never want to forget how lucky I am or take any aspect of my health or education for granted.

Another Year Gone By

I wrote this back in January, just after my 24th birthday, and then forgot to post it. Here is the past year in review.

In 2014 I:

  • Earned more money than I’ve ever had in my life
  • Put myself out there in new ways with mostly positive results
  • Had my millionth, “am I dying,” health scare
  • Gave up yet another dream due to my health
  • Learned to cope in more positive ways
  • Realized I’m capable of more than I think I am and that I should freak out less
  • Changed colleges and majors (from nursing to social work)
  • Began driving on my own, finally
  • Felt older than I should
  • Watched countless friends get engaged and/or married, and surprisingly didn’t feel bitter or lonely
  • Tried dating, a little
  • Decided I just don’t care about romantic relationships right now
  • Cried, a lot. In private
  • Saw a counselor almost weekly
  • Hurt people who had hurt me with my words because I felt they deserved it
  • Realized it is not my place to determine what other people deserve, experienced regret
  • Weaned myself off of several of my long term medications
  • Went to the POTS Treatment Center and felt the best I had in years
  • Met many incredible people experiencing the same things I was who I hope to keep in touch with for life
  • Had a fever the entire year
  • Grieved over extended family due to both loss of life and loss of trust
  • Helped save someone’s life
  • Had my first trip free of my parents
  • Shot my first national print job
  • Struggled
  • Grew up a little. I hope.

In 2015 I want to:

  • Continue my foray into healthy eating and exercise
  • Move out of my parents’ home
  • Gain more independence
  • Have success with my at home POTS Treatment protocol
  • Begin attending a social work program at college
  • Somehow gain confidence
  • Put more effort into modeling
  • Express myself through writing
  • Meet more people and make more friends
  • Pray more and really get to know God
  • Figure out where I stand (and where God stands) on various ethical issues
  • Buy nothing (other than the essentials) for 100 days straight
  • Not be an idiot
  • Practice more positive self talk (see above)
  • Grow up a little more

Start Here – Where I’m at Now

My current list of diagnoses, drugs, and symptoms is as follows –

Diagnoses:

Dysautonomia (POTS, NCS)

Narcolepsy

Fibromyalgia

GERD

Eosinophilic Esophagitis (currently in remission due to diet)

Nystagmus

Suspected IBD

Tested as Hyperthyroid

Generalized Anxiety Disorder

Depression

Most likely PTSD (I’m doubting this diagnosis as I wonder if it’s just the messed up fight/flight response)

Possible OCD

Current Symptoms (well, as many of them as I can remember):

Inability to sleep at night (example: it’s 9AM. haven’t fallen asleep for the “night” yet.)

Need to sleep at least 12-17 hours per day

Nausea (to the point that I sometimes start gagging out of nowhere)

Extreme fatigue

Inability to focus at times

stiff neck and back with knots and cracking

joint pain

“crashing” after an activity – needing to sleep for hours after and then spending days with worsened symptoms

electric shock like sensations

brain fog/ feeling “out of it”

feeling of floating and spinning

numbness and tingling of extremeties

shaking

overall weakness

feelings of being stabbed in random parts of body

back pain

chest pain

difficulty breathing

feeling of painful poison in veins

feeling of limbs/body being stuck and crushed under heavy concrete

muscle pain and sensitivity to touch

dizziness

trouble walking, standing, or sitting for more than 30 minutes at a time

black outs

headaches, especially after attempting to sit up too long

deep sense of anxiety and loneliness, racing thoughts occurring at night

occasional bouts of extreme restlessness and overexcitement

muscle weakness

depression/sense of hopelessness over situation

lethargy

easily tired muscles – cannot use mouse on computer for too long without switching hands, etc

confrontation leading to extreme sense of being in danger, hiding and crying

bleeding from throat (currently not happening)

blood in stool (currently not happening)

diarrhea ranging from severe to occasional

abdominal discomfort

abdominal pain which can get severe enough to lead to blacking out

abdominal spasms

visible muscle twitches in any/all muscles (currently thought to be myoclonic jerks)

anxiety, mild to severe depending on situation

sensitivity to heat

sensitivity to cold

dark line around mouth previously not there

fever which has so far persisted 7 months

sensitivity to light, sound, overstimulation of any kind

 

Current drugs:

Midodrine

Mestinon

Ocella

Thermotabs

Hyocyclamine

Cymbalta

Pantoprazole

Diphenhydramine HCL

Melatonin

Digestive Enzymes

Probiotic

Fish Oil

Multivitamin

Vit. D

Vit. B12

Occasional adderoll (prescribed for narcolepsy)

 

I’m sure I’m missing some more random symptoms (I have a LOT of random symptoms), but this is the majority of what is going on with me. I’ve been sick for just under 8 years and it’s been a constant struggle. The POTS came first and was diagnosed after 2 years, the Narcolepsy 2 years later, the Eosinophilic esophagitis 2 years after that. It’s very frustrating feeling like I am getting more and more sick instead of better – the abdominal pain episodes started 3 years ago with the bleeding and GI symptoms beginning less than a year ago. It scares me watching my body decline and seeing my mental health suffer as a result.  I wish I had words for just how soul crushing the fatigue is – everything suddenly becomes SO DIFFICULT and overwhelming because of it. If I wash my hair, that’s the day spent. I have managed to make my way through high school and community college while battling health issues, and at 23 am hoping to attend nursing school in the fall – but I need a change in order for that to be possible. I’ve been desperate for health and answers for years and have tried just about everything you can imagine. So often I am sick of dealing with arrogant doctors and crazy naturopaths who end up doing more harm than good, but I can’t give up. My next attempt at achieving better health? The POTS treatment center. At this point I’m doubtful that my symptoms are all caused by Dysautonomia, but I don’t know what else to do. I want to find an underlying cause for everything but no doctor seems to want to help. I am hoping and praying that the treatment center can at least help with the fatigue and blacking out and “riled up” feelings, which would most certainly be an improvement.  I just don’t know if I can handle more false hope and disappointment.