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.

Then 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!

When you are living with multiple chronic illnesses things can quickly spiral out of control.  Cruising along getting through the day to day and then suddenly you are veering off the road and into the dark unknown.

What started as a tiny pimple turned into a nightmare.  I got a cellulitis infection on my neck which triggered a chain of events leading to a devastating new diagnosis.  How did I get here alone in the dark and how do I get back on the road?

When the tiny “pimple” grew to half my neck in size in 72 hours time, my doctor told me he’d meet me in the ER.  When you are immunocompromized (as I am), you don’t take risks with infections.  I decided to have my caregiver Nathalie drive me an hour to the big city hospital where all my specialists are on the off chance they decided to admit me.  This turned out to be a wise move on my part as I they almost immediately decided to admit me for IV antibiotics.

But even as the infection started to clear over the next few days of IV vancomyocin, things started to go downhill.  A familiar yet mysterious pattern emerged reminiscent of my hospitalization in May.

I developed both blurry and double vision.  Then I started having severe weakness borderline on paralysis in my left leg.  Then my right leg.  That is where things had stopped in the past and in May, but this time the paralysis continued to ascend.  I could no longer control my bladder and had to be catheterized.  Then I began having trouble moving my arms.  Finally my breathing muscles were effected.

My doctors quickly moved me to the ICU.  Effectively paralyzed, I was intubated and put on a ventilator.  I received a high dose pulse of steroids to help calm down my immune system which was attacking my nerves, preventing me from breathing on my own.

After a week of having  a machine breathe for me.  I was able to breathe on my own again and was moved out of the ICU to a monitored floor.  But the mystery remained.  What had caused all this?

Well the answer came in the form of another infection – a kidney infection.  With the new infection the blurry/double vision and paralysis got worse again rather rapidly.  Turns out the antibiotic being used to treat the infection can make symptoms worse for people with a certain disease which matched many of  the symptoms I have.

So my neurologist decided to test it by giving me a medication called Mestinon which specifically helps weakness in people with this disease.  Sure enough within  a very short time of taking the medication I could move my legs again!  And when the medication wears off I go back to near paralysis.

And so last night my doctor officially diagnosed me with Myasthenia Gravis.  And here I am veared off the side of the road with this scary new diagnosis.  And unfortuantely this new diagnosis doesn’t replace any of my other diagnosises.  I still have Sjogren’s Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroidis, Fibromyalgia, and so on and so forth.  And I still have an undiagnosed neurological component – the autoimmune brain stem inflammation.

Here’s some information about Myasthenia Gravis from the Mayo Clinic site:

Myasthenia gravis (mi-uhs-THEE-ne-uh GRA-vis) is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. The cause of myasthenia gravis is a breakdown in the normal communication between nerves and muscles.

There is no cure for myasthenia gravis, but treatment can help relieve signs and symptoms — such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.

What I had was what’s called a Myasthenic Crisis where my breathing muscles became too weak to do their job.  Scary!  That is why I ended up on a ventilator in the ICU for a week.  Now it was all starting to make a frightening sort of sense.

I just got moved to a non-monitored floor, so I’m overall doing much better physically.  Though I have several tests scheduled for next week to determine where the disease process is at and if I still need a special kind of blood filtering called plasmapheresis to help me recover the rest of the way.  I also have to have a scan checked to see if I might need surgery as well.  That’s in the short term.  In the long term I still need to get off all the prednsione I’m on that has somewhat been keeping this disease at bay.  That means some harder core immunosuppressant medications or possibly chemo agents to suppress my immune system so it will stop attacking me.

But where does this all leave me emotionally?  Well its like I’ve veered off the road.  This diagnosis wasn’t on the route I was expecting to travel.  And I suddenly feel alone in the dark in a strange place and I don’t quite know where I am.  On one hand I am happy to finally have some answers.  On the other hand this is not a good diagnosis to have.  The idea of ending up back on a ventilator in the ICU every time this gets flared up terrifies me.

It’s tempting to just act the the scared little girl I feel like and curl up in the corner and have a good long cry.  But that won’t really get me anywhere but feeling more miserable and in just a bad situation.  So how do I get back on the road?

I think I will have that cry.  I need to vent some of the shear grief I’m experiencing at the news of this diagnosis.  I’m really really scared and I shouldn’t feel like I have to hide that or put on a happy face to please everyone.  I need some time to feel the weight of my diagnosis and experience the bad feelings associated with it without denying them or stuffing them down.  This doesn’t mean I will wallow in them either though.  But there is a time and place for a healthy dose of sadness.  In fact, I believe it’s perfectly possible to be deeply sad about something and still consider yourself a happy person.

So I’ve veered off the road and had my cry in the dark.  How do I get back?  Now more than ever I must turn to God and Christ to guide me back.  To provide me the strength and comfort I need.  With them I will never be alone in this.  I turn to them in prayer and in the study of scripture.  When people tell me how strong I am in all this, I really feel all that strength isn’t me at all, but my faith in Christ.  With the Holy Ghost as my constant companion  I can’t feel too afraid.  And I can’t feel alone.  The knowledge of Christ’s eternal love for me and knowledge of the pain I’m going through guides me back to the path so that I am no longer veered off the road in the dark.

Finally I have to have trust in myself that I can get through this.  I have found ways to adapt to every obstacle in my path thus far, and I will find ways to adjust to this too in time.  Yes right now I feel crushed, but I will not let this crush me.  I feel devastated, but this will not devastate my spirit.  But in the meantime, to be perfectly honest, there will be a lot of tears shed.  And I’m okay with that.  It’s all part of the process of getting back on the road again.

Things 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.

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
Always
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.

As the month draws to a close, I am reminded that April is Sjogren’s Syndrome Awareness Month.  Sjogren’s is my primary diagnosis, the overarching disease process that ties all (or most) or my symptoms together.

But what is Sjogren’s Syndrome?  According to Sjogrens.org:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.

To make it more personal…

• Imagine you can’t eat crackers because you don’t have enough saliva to swallow them.
• Imagine you are so dry that it hurts to use tampons.
• Imagine your eyes are too dry and painful to wear contacts.
• Imagine you need to take 29 medications to keep your illness under control.
• Imagine the disease effects your central nervous system and causes difficulty concentrating and remembering things.  Imagine it sometimes even causes vertigo, seizures, numbness, facial drooping, and episodes of paralysis.
• Imagine the disease has spread to your pancreas in the form of autoimmune pancreatitis causing severe pain and making it difficult to digest food without the help of medications and sometimes a feeding tube.
• Imagine the disease causes such severe joint pain you are confined to a wheelchair for over a year and now use a walker to stand and walk.
• Imagine you are hospitalized several times a year for up to six weeks at a time.
• Imagine you have Sjogren’s Syndrome.

There are so many facets to it this doesn’t even begin to cover how Sjogren’s Syndrome affects me, but I hope this provides a glimpse into my world.

For more information see my post from last year on Sjogren’s Syndrome Awareness Month or visit Sjogrens.org.

Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word “faith” they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word “faith” is merely defined as “confidence or trust in a person or thing.”

I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.