Tag Archives: chronic illness

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
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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.

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.