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.

I have multiple autoimmune diseases that have made me really sick over the years.  But got a bad skin infection (cellulitis) last week and ended up in the hospital last Friday mostly because I have so many complications including being on a lot of immunosuppressants.  The infection is mostly better now thanks to strong IV antibiotics, but the whole ordeal has triggered my autoimmune brainstem inflammation which is giving me severe double vision and problems moving my left leg.  I am now getting really high doses of IV steroids to try and stop this.  We’ll see how it goes….  Healing thoughts and prayers are most most welcome!!!!  I love you all!  ♥

Please post any questions you have in the comments!

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.

I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in his strong embrace.  Instead he gives my heart a chase.  He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine.  I believe in studies and the scientific method.  He believes in testimonials and isolated case reports.  But that it is neither here nor there. In our differential beliefs we are at in impasse.  And no matter how I beg and plead I can’t get him to respect my wishes.

I even tried a different tact.  I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health.  But then, my dad went the very next day against my will and set up a consultation between an alternative medicine doctor out of state and my current internist.  This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken.  I am left unsure if I want him in my life at all right now.  As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway.  So much trust has been broken.  I just want him to hold me and tell me it it will all be okay.  Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous.  I can’t stop crying.  Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it.  And then there’s my dad making it worse.  Telling me the treatment I’m choosing for myself is going to kill me.  He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime…  I will get by without him.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.

Sometimes you expect one thing and get another… especially when living with multiple chronic illnesses. I finally saw the Sjogren’s specialist at yesterday.  He spent a good 40 minutes pouring over my records and taking notes on them.  He listened to my insanely long list of symptoms.

The interesting thing is he came to the conclusion that Sjogren’s probably isn’t my main diagnosis.  He really feels that I have some sort of autoimmune neurological disorder going on causing the seizures, episodes of paralysis, tremor, severe pain upon standing that has me in a wheelchair, motility problems, bladder problems, memory problems, and recent facial drooping and uneven pupil dilation.  He thinks the Sjogren’s is secondary to whatever is causing all of that.

He’s going to be coordinating with my normal rheumy to get me a lot more specific tests to work me up for this and try and figure out if this is originating in the peripheral nerves, ganglia, or brain.  He said he suspects that it is probably in both either the peripheral nerves or ganglia and also in the brain.  He also probably wants to me travel to John Hopkins to see a neurologist specializing in this there.  He said my case is one of the most unusual and complex and in my situation I need to go to the top doctor even if he or she is located on the other side of the country.

I’m not totally sure what to think and am still processing this.  I went to him expecting to discuss other treatment options for Sjogren’s and am now going to be pursuing an alternative primary diagnosis instead.

I’m also feeling pretty scared.  I feel like I’ve been thrown back out into unknown territory again.  Back trying to tread water in the deep end of the pool.  I also know that the kind of disease he thinks I probably have is not something that is good to be diagnosed with.  I’m also frustrated that no one has really seriously pursued the neuro stuff thus far and that I had to drive 3.5 hours to see a Sjogren’s specialist to figure that Sjogren’s probably isn’t my main problem.  Sigh.

I guess part of it too is that another whole year of my life has rolled by… I just turned 26… and now we are back at trying to diagnose me again which means its going to be even longer till we can start a treatment other than prednisone again which means its going to be even longer before I have some hope of having some semblance of a “normal” life back again.  Maybe its because it’s that time of the month right now as well, but I’m just feeling really upset and like this is a step backwards.  I know intellectually it is really maybe FINALLY a step in the right direction, but it sure doesn’t feel that way right now.  I’m 26 and I want my life back.  I’ve been too ill to have a “normal” life since I was 18.  I’m just so tired of it all.

I guess the worst part is the not knowing what’s going on or what to expect.  If the doctor were to just tell me I’m going to be stuck in a wheelchair for the rest of my life at least I could learn to live with that fact.  But I don’t have any facts right now to learn to live with so I can grieve and move on.  Yes I suppose that’s the worst part of all.

I feel so lost right now I don’t know what to do with myself really.

In the meantime, my mom and I are staying at my grandma’s since she lives by this new Sjogren’s specialist which was 3.5 hours away from where I live.  We’ll be driving back on Wednesday.  The Sjogren’s specialist said he’d get back to me in about 2 weeks  – after he has a chance to talk to my current rheumy and review all the neurological testing I’ve already had done, so that we don’t repeat any tests unnecessarily.  Then there are a bunch of specialized neuro tests that I’ll need to have done either around here or at Johns Hopkins.

Intellectually I know this is a good thing and that finally getting the correct diagnosis will lead to the right treatment that will eventually get me healthier and able to live more of a life.  Right now I’m just feeling kind of depressed about the whole thing.  I’ll be okay though.  Just takes a little time to process all of this.

In the meantime I’m staying more than busy.  I’ve been continuing on with National Novel Writing Month where you try to write a 50k word novel in 30 days.  So far I’m at about 12k words, so I’m doing fairly well.  I’ve been letting a handful of beta-readers read along as I write it, and the feedback has been extremely positive and motivating for me to keep writing.  I’m also working on designing two online games and working on a huge needle point.  So at least I’m not bored. 

It all really comes back to maintaining hope.  Emotionally this has been a bit of a setback for me because I was expecting answers and got more questions.  But I choose to maintain hope that this will lead me to the right treatment in time.  Ultimately I already have whatever I have.  The diagnosis — the label — won’t change that.  I am learning to live with whatever it is regardless.  And I have faith in myself that I will get through this.  As long as I don’t loose hope I haven’t really lost anything.  There are always new options and opportunities I can make for myself if I remain hopeful and open to them!