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.

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.  It’s working title is The Alone Elevator.  It’s a coming of age story set in a dystopian future about the pains and trials of going up and the importance of the freedom to think for yourself.  Here’s a brief summary:

Chosen to attend the prestigious Riddlebane Academy, Kylie Lockmore soon learns secrets that turn her world upside-down.  From the drug her grandmother invented to control the populace to the missing sister she never knew she had, Kylie is forced to question the truth and decide where she stands.

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.  I am more than a sum of doctors appointments and hospital stays, symptoms and side effects, walkers and wheelchairs.  There are so many other things that define me.  And it occurs to me how important it is that I remember that.  I am a creative thinking feeling being.  I am a graphic and web designer, a scrapbooker, a novelist.  I am a daughter, a sister, a friend, a child of God.  I am so much more than just a “Novel Patient”.

But how do others see me?  Do they see just a “sick girl” with a walker?  Or do they see the real me?  I think that the more I define myself as I want to be defined the more people will see the me I want them to see.  If I focus on being a patient that is what will define me.  But if I focus on being a Novel PERSON…  well that is what I will be and radiate to the world.

Here is an excerpt from the first draft of my novel:

The Alone Elevator Chapter 1 Excerpt

There are two ways to look at everything.  Like dark and light.  Like black and white.  Positive or negative.  There are two ways to view every situation life throws your way.

People often ask me how I maintain such a positive attitude despite all I go through.  I tell them that first of all life is too short to spend being unhappy.  Besides… I have two choices.  I can be sick and miserable or I can be sick and happy.  The choice is mine.  And I chose to be sick and happy!

It’s a sort of double vision as I see it.  There are two ways to look at every situation.  And right now I literally am experiencing double vision.  I am also having extreme difficulty lifting and moving my left leg.

Yesterday I saw a neurologist here in the hospital.  (Yes I am STILL in the hospital – 21st consecutive day and 27th total day.)  And he thinks that one of two things is going on.  Either I have an ongoing chronic probably Autoimmune neurological disease causing this and my other neurological problems.  If this is the case it might be something like Multiple Sclerosis or something similar.  Otherwise I might have had a one time incident a few years ago when I couldn’t move either of my legs for a month that left me with permanent damage.  Either way the infections I’ve been fighting has been exacerbating my symptoms.

While we are trying to figure things out my neurologist gave me an eye patch so that my double vision is reduced by looking out of only one eye.  Now I can see more clearly.  And what I see is this…

I could curl up into a ball and cry about having another serious health problem – a health problem that is effecting not only my vision but my mobility and my cognitive abilities.  Or I can realize that I already have had this problem either way.  Now I’ll finally hopefully have a name to put to it and a way to treat it and make it better and easier to live with!

Looking like a pirate with my eye patch (ARRRRRR), I no longer have double vision.  My vision is clear (despite the fact that it is still a bit blurry even with my glasses).  So I can clearly see that I have a choice in how I view my situation.  And I chose to deal with it with strong faith that things with be okay somehow as long as I choose happiness every time!

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.

Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.