Tag Archives: POTS

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.

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Highs and Lows

The past two weeks have been a whirlwind.  Get an amazing new job: high. Experience major anxiety about said job: low. Work and actually enjoy it: high. Crash for days after and realize my health isn’t anywhere near where I want it to be: low. The highs have all been giant accomplishments – getting the (very part time) job, finally getting my driver’s license at 23, shooting a magazine editorial – but I can’t seem to enjoy them for too long. The bad thoughts are always lurking in the back of my mind, telling me not to relax because something bad is bound to happen. I wasn’t always like this; I’ve been conditioned after having catastrophe after catastrophe come up out of nowhere. I desperately want to be a stable person, physically and emotionally. I desperately want to be a NORMAL person. But it often feels like the journey to get there is impossible.

This week I met with an infectious disease doctor in an attempt to figure out the cause of my (now 9 month) fever. He was incredible – by far the best doctor I’ve ever had. And he wanted to help me. I was elated. But then he told me he agreed with my thought that this is probably all caused by an autoimmune disorder. And then my mom told me her Lupus started with a constant fever. And I got really, really scared. I should be happy that someone is finally listening to me and taking my concerns seriously, but hearing him agree that I probably have an autoimmune condition felt like a punch in the gut. The POTS Treatment Center was supposed to make me better. How will I ever be better if I have an additional illness? I wish I could fill my mind with the stories of people whose POTS improved when they began treatment for an underlying condition, but instead my brain is swirling with negative thoughts. I’m supposed to start clinicals for nursing school in the fall – what if I’m put on immunosuppressants? What if they can’t get my health in control in time for school to start? The nursing student schedule is beyond rigorous. I had to hold back tears when I saw it, because I can’t imagine ever being able to handle this kind of hours. Confirming an autoimmune disorder would also confirm my long running fear that my illness is genetic and can be passed down. I want to be a mother more than anything in the world, but I couldn’t stand for a child to suffer like I have.

The infectious disease doctor is very thorough and decided to run lots of tests (which all came back fine). I appreciate this, except it meant losing lots of blood. I knew it would be a struggle since I have hypovolemia and a chronically low red blood cell count, but I wasn’t prepared for how big of a crash it induced. The past five days have been outright awful. The worst pain I’ve experienced in months, unbearable fatigue, blackouts, migraines.  I had a few bright spots, like getting to see a friend who patiently spent hours with me even though we just stayed stationary in front of the tv and finally feeling well enough to wash my hair, but it was mostly just pure misery. When my body feels bad for long periods of time my mind starts to go with it. The pain makes it feel like life isn’t worth living. The laying in bed being useless makes me feel useless as a person.  It’s so isolating, so lonely, especially when social media is there to show you all the things “normal” people are out doing and accomplishing. It starts to feel like it’s being rubbed in my face and I’ll never measure up.

By the time I had my photo shoot today I felt like I was the most pathetic, hideous human on the face of the earth and was not fit to be seen in public, forget about being seen in a magazine. I tried to put the thoughts aside but it was so hard. I felt like a horrible model, and I was so intimidated to be standing next to the other model who was gorgeous. I think it was very, very obvious how little confidence I had – this is by far the worst I’ve ever felt about a shoot. I wish I could think about the good things that were said about me – I was told I look great without makeup, have amazing legs, did a wonderful job – but those aren’t the things my mind dwells on. My mind dwells on the time I was told to relax my hand and the time I was told to put my shoulder down. I’m convinced those things make me an awful model no one will ever hire again.

The straw that broke the camel’s back was an incident after the shoot ended, when I wasn’t able to get a ride to the casting I was supposed to attend immediately after. All the frustration of not being allowed to drive on my own because I’m so new to it set in and I was so upset I was shaking. I was texting a friend about my feelings, which led to a response of, “you’re hella sheltered lol.” This made me even more upset – first of all because it felt so insensitive, second of all because the fact that I AM so sheltered is really getting to me lately. I will have been sick for eight years on June 5. I passed out in the shower at age 15 and my life completely changed. I’ve missed so many experiences and I absolutely hate it. At my job last week, a guy was shocked to hear I’ve never been to a concert and asked what I do for fun. I didn’t have an answer. My life has been completely consumed by my health and trying to push to get through school in hopes that I will someday be well enough to work. I want to be a normal 23 year old and I’m so far from it. I feel like I’ll never be able to catch up, never be able to have the independence and confidence I should have. It hurts. Everything hurts.

So today ended with me huddled in a ball of tears and pain and exhaustion, after working as a model – a position I’m sure many girls would kill for.  Why can’t I just be happy and feel good about that?  I wish I could be positive and block out all the negative thoughts, but it just feels like I’m being beaten down time and time again. It’s hard to be positive when the good never lasts. Why does everything have to be so very difficult? Why does everything seem so easy and effortless for others? I try so hard, but I never measure up. It makes me feel like an incompetent failure. It’s hard to be happy when you’re so exhausted from fighting so hard, day after day, hour after hour, minute after minute. I know I have to get back up on the horse and make it through another day and try again, but sometimes I just want a break from the fight. Sometimes I just want to be normal.

Ouch.

It’s been a long week. Therapy involves lots and lots of deep breathing while being hooked up to sensors that monitor muscle tension, heart rate, and temperature in extremities. The goal is to train the body to regulate these responses which are normally done unconsciously by the autonomic nervous system. Even though all my treatment thus far has been done with me in a reclining position, it’s EXHAUSTING. And my head is spinning from all the new supplements and products being added to my med schedule every day. My third day of treatment I was taken aback when I heard a young man screaming in frustration and then saw a teenage girl get taken out of the treatment center in her wheelchair while curled up in the fetal position sobbing. I understand now. It is hard and frustrating and tiring, especially when you feel like this is your last hope at achieving normalcy. I am doing surprisingly well with it, though. My biggest struggle at the moment is just exhaustion and my stomach acting up today. The pain is coming back, which makes me scared.

What really breaks my heart is seeing the young, sweet girls I met struggling. The 12 year old was hospitalized yesterday after being unable to eat or even drink water for over 24 hours. We suspect undiagnosed gastroparesis but she was unable to use an ng tube and will receive a picc line tomorrow. It is so unbelievably sad seeing a TWELVE year old struggling so much with POTS when she should be finishing sixth grade and just starting to get a slight idea of who she is. I really mean it when I say it breaks my heart, especially since now that she is hospitalized she can no longer continue with the treatment program. The seventeen year old girl is so sweet and caring and I see so much of my story in hers. She got sick very suddenly at fifteen, like myself, and had to quit gymnastics (I had to stop dancing). I absolutely HATE that she is going through what I went through. She is currently wheelchair bound and unable to so much as go to dinner. Seeing her faint because we’ve been sitting up too long for a two hour meeting makes me so sad. This is not what a seventeen year old  girl should be dealing with. This is not what anyone should be dealing with.  I really hope this center helps us both, along with all the other incredible POTS patients I’ve met. It still blows my mind to be in a place where people actually understand POTS and to be surrounded with other patients who can relate to the pain of trying to wash your hair without fainting. It’s both joyful and painful.

I’m in Texas, Y’all!

I have had my first two days at the POTS Treatment Center in Dallas and I’m feeling very hopeful. I mostly understand where the Doctor is coming from and what her treatment is trying to do- she says that the sympathetic part of the nervous system is in overdrive in POTS patients and that the biofeedback treatment aims to shut it off so the parasympathetic portion can take over.  This makes sense, except that I feel a lot of POTS patients have symptoms coming from both divisions of the nervous system. She talked a lot about how our blood vessels over constrict and cause headaches.  When I asked about the blood pooling caused by blood vessels not constricting enough in POTS patients, she said they only dilate upon standing. I know that’s not the case because I have issues with blood pooling while sitting and sometimes even while laying down as well.  I was also disappointed that she didn’t understand narcolepsy. She asked if I fall asleep while sitting up and when I said no, she implied that my diagnosis was inaccurate. I tried to explain that narcolepsy is so much more than that and has a wide range of symptoms, but I’m not sure if she believed me.  I was really surprised that she wasn’t more familiar with narcolepsy, given that it is a neurological disorder. She still seems very intelligent, though, as well as very compassionate. She talked about how bad medications are and how this program will allows people to get off their medications and participate in normal sports and activities. I’m not so sure about that. I am expecting to see improvement, but I’m not sure that this will completely cure me. I think it will really help my stress levels and anxiety as well as my health, which is what I’m most excited about.

Overall, I’m feeling very happy and hopeful. My sleep schedule went out the window a few days prior to leaving because my anxiety levels were so high. I was up worrying until 3AM every night. I just don’t feel like I can handle another let down. There has been so much money flushed down the drain on alternative doctors who claimed they would cure me and then didn’t help at all. I don’t know if I can handle being crushed like that again. And I don’t know if I can handle the disappointment my mom would feel if this treatment didn’t work for me. It was really hard watching her write the $4,500 check to the center Monday. I’m trying not to think about it too much, though, since Dr. K says I need to be under NO stress for treatment to be effective. I am trying to just stay realistic with what I’m expecting from this trip – if results are even better than I expect, great! If not I won’t be disappointed.  Just getting away from the stress and drama of my home has done me a world of good. I’m SO much happier here. Today was also wonderful because we had a group session and I got to meet other people with POTS! There were two teenage girls, ages 12 and 17, and a woman who was 51. We all related to each other so much. I got the girls’ numbers – they are both so sweet! They have all had POTS less than two years, so they’re still new to the world of the chronically ill. Hopefully they will see major benefits from treatment and won’t have to stay in this world very long! I wish no one had to live like this, but I don’t know why God seems to choose the sweetest people to do so. Why are all the chronically ill people I meet so awesome? Are we naturally awesome, or does chronic illness change us and make us that way? That’s some chicken or egg philosophy for you.

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.