Creatively Courageously Embracing Health


This is not an easy thing for me to confess, so please be kind.

I realized that I am afraid of getting better.  Not because I am afraid of being well; I want nothing more than to be well.  I am afraid of getting better because I am afraid that I won’t.  In other words I am afraid of disappointment.  I am afraid that I won’t get better in both the long and short terms.  I am terrified in fact.

I’ve been having a rough time emotionally with the new diagnosis of Myasthenia Gravis and this prolonged hospitalization (over 4 weeks now).  It’s been a grieving process.  Lots of different emotions.  Lots of tears shed quietly making it hard to breathe the oxygen coming through my nasal cannula.

But I’ve had a breakthrough as well.  My friend Monique and I had a wonderful discussion about all this out of which I created a new way to be in this experience of being ill which is to experience it as quite the opposite.  I created the possibility of being Creatively Courageously Embracing Health.  This means that I don’t have to be afraid of not getting better because I am Creatively Courageously Embracing Health.

Creatively Courageously Embracing Health

As I continue this journey Creatively Courageously Embracing Health, I have undergone 3 treatments of plasmapheresis.  The improvements have been huge!  I can move my legs again without the help of medication (though the medication further improves my strength levels)!  I can also breath a lot better and my voice is stronger as a result.  My doctors are deciding if I’m going to have 2 more treatments or if we are just going to stick with the 3.

Tree of LightThen begins the long process of rehabilitation.  Being weak and/or paralyzed for so long has really set me back, since I am Creatively Courageously Embracing Health I know I will find a way to get where I am meant to be.  I will courageously push to but not past my limits to recover and then I will creatively adapt the rest of the way so I will be where I want to be in embracing my health.

I just hope you will all embrace this possibility with me!

Too Young: Invisible Illness and Pain


“Too young.”42-15653239

That is a phrase I have heard a lot in different contexts since I’ve been dealing with chronic illness.  I’ve been told I’m “too young to be this sick”, “too young to have to use a wheelchair”, and “too young to have to use a walker”.  Most recently I was told I’m “too young to increase my dose of pain meds” by my pain management specialist.

I went to my monthly pain management specialist appointment last week.  I’ve been having a lot more pain some days lately.  Stabbing pain in my joints that wake me from sleep and make me gasp in pain when I walk (but yes I’m still walking 99% of the time!).  I went to my appointment with the hope that I would get some relief.  But my doctor felt that I am “too young” to increase my pain meds.  I left feeling disappointed, a little angry, and still in pain.

On one hand I understand her concern.  If I have to keep increasing my pain meds now, what will I do in five, ten, or twenty years for my chronic pain?  What will I do if I end up in the hospital with an acute flare of Autoimmune Pancreatitis which is extremely painful and no pain meds will work anymore?

Chronic neuropathic pain

But on the other hand, I’m in pain now.  And despite what people what people might say, the unfortunate reality is that I’m not “too young” to be in this much pain.  And my age doesn’t make my pain any less painful or any less valid.  And my age especially doesn’t make my pain any less deserving of treatment.

Overall I’ve been happy with my pain specialist doctor.  I’m grateful that she is willing to prescribe me pain medication at all.  I went through several doctors before her who flat out refused to treat me because of my age.

The crux of the problem I think is that chronic pain is invisible.  No one can see my pain.  My pain specialist doctor certainly can’t.  Only I can feel it.  However, though my pain is invisible, I certainly am not.  And I cannot let my invisible pain (nor any of my other invisible illnesses) make me feel invisible.

Chronic Pain BarbieSo what do I do?

I need to speak up for myself and advocate for myself more.  I cannot let myself feel intimidated about telling my pain specialist that I disagree with her decisions.  If I shrink back and keep this to myself, I make myself invisible as my pain.

I also need to share my experience with the people in my life, so they can understand what I’m going through.  I’m not talking about whining about being in pain, but, in the appropriate settings, tell the people in my life what it feels like physically and emotionally to be in my shoes.  Part of that is this blog.  Sharing my journey on this blog helps me feel empowered and lets me make my invisible illness visible.

The bottom line is I am “too young” for just one thing… I am “too young” to let this beat me!

This week is Invisible Illness Awareness Week!  Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love.  Help spread the word!

Scrapbooking My Illness Journey


You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking. While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

Click to continue reading “Scrapbooking My Illness Journey”

Definitions: More Than Just a Novel Patient


There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects. But one of them has nothing to do with being sick. If you recall last November, I started writing a novel. As I’ve been writing this novel I’ve been thinking lately about how I define myself. So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am. But that is not how I want to be defined.

Click to continue reading “Definitions: More Than Just a Novel Patient”

A Place For Him


Cheer FlowersThings have been emotionally rough and raw lately.  Lot’s of things are in transition.  Relationships in flux.  And I’m still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count).  I’m trying to think of it as being 39 days closer to being released from the hospital.  It doesn’t work that well though.  But cheery flowers like these ones I got from my Great Aunt and Cousins brightened my room and my mood.

Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today.  It was just what the doctor ordered.

Furry Visitor

In the midst of confusion, I often turn to poetry to help capture my thoughts.  I wrote this one in about ten minutes, and I rather like it.  An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
A place for Him

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics.  Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose.  Hehe.  So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.

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