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Showing posts from April, 2017

Teen Spoonies This One's for You

I first got sick at 12. I fought it and mostly won until I was 17 and I had to take a medical leave of absence from high school (for two years). That's when I became really sick, or professionally sick, for about three years.

There's a few things I want to tell you guys, having been both functionally and non-functionally chronically ill throughout the entirety of my teens. I know it's scary as hell. It's hard not knowing what is happening to your body or not being in control of it. You don't know what to tell your friends when they ask you what's going on and why you're missing school. You keep going to the doctor and having all these tests done, but you aren't getting any answers.


Especially when, like me, you have a complicated diagnosis or co-morbidities. I have been diagnosed with IBS, GERDS, migraines, CFS, POTS, allergies and asthma, Lyme with viral and plasmodial co-infections, fibromyalgia, and EDS.



Finding answers and diagnoses does help,…

3 Tips to Finding Your Chronic Illness Tribe

First, My Story...      Everyone longs for a sense of community and belonging.  Living with a chronic illness, especially as a teen and young adult, I found the social isolation harder to endure than all of the physical effects of my illness.

     I first got really sick when I was seventeen, and I just about fell off the face of the earth.  I stopped showing up at school.  I couldn't go out on the weekends.  I was in so much pain I couldn't even bear a phone conversation, so I ignored phone calls.  Every doctor I saw had absolutely no idea what was wrong with me and most of them had very psychologically damaging things to say to me (see my blog post Doctors Suck! for more info).  Therefore, I had nothing to tell friends, classmates, or teachers when they all wanted to know what was going on with me.

     My peer group was out having life experiences that I was unable to participate in and experience.  I sat out the last fe…

Doctors Suck!

It's a familiar story for many of us with chronic or rare diseases.  At first no one can figure out what illness you have.  Your symptoms are alarming; they significantly disrupt your life.  A new mission has presented itself, you go from doctor to doctor looking for help.  I wish those doctors knew just how hard it is to drag yourself out of bed when your whole body hurts and you are tired beyond fatigue.  I wish they understood the vulnerability of sitting there as a preteen, teen, and young adult laying my life bare.  The truth is that I battle with feelings of shame about my illness.  It isn't easy telling a doctor who is a complete stranger, regardless of their degree, that I need help to bathe or that I generally don't get out of bed ,except to pee.  Doctors responded to my confessions with, "what do you do all day?"  I found that emotionally crippling.  I felt completely judged.
     Every doctor you see tells you "It's all in your head,"…

Not so Happy Birthdays: Dealing with Grief Caused by Illness

Yesterday was my happiest birthday in eight years. The past eight birthdays have been less than happy because I have found myself at different stages of illness, isolation, and grief.  Happily, this year was different. 
     This year, I felt blessed and not just content, but overjoyed with all that I have.  No, I am not where I would like to be health-wise, and my physical condition absolutely affects my social, emotional, and spiritual health.  However, one thing I have let go of is comparing myself and my life to others, including my healthier self.  When my friends have birthdays many have surprise parties, go out drinking with crowds of friends, and the like.  Often when my birthday rolls around I've been too sick to get out of bed for weeks and I haven't been communicating with even my closest friends simply because I haven't had the strength.  Expecting my birthday to be the same as a healthy twenty- something's birthday always set me up for disappointment,…

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ca-pub-3805058999900394 Welcome to Healing Hugs and Hope!   It is my goal to create a space for people fighting illness,  and their caregivers to a find supportive community and feel-good content. They say laughter is the best medicine, and we believe that here. Take a moment, a breath, and enjoy!