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!

I hoped for the best, but prepared for the worst, and unfortunately the worst won out this time.

I’m back in the hospital again.

I woke up Thursday morning feeling pretty horrible.  Fever, chills, dizziness, and worsening kidney pain.  After three days of oral antibiotics, my kidney infection was getting worse not better.  I called my doctor who agreed it was time to head to the hospital.

By the time I got the ER, fever, pain and dehydration had conspired to give me tachycardia (racing heart rate).  I suppose one of the upsides of being really sick is being seen right away.  Despite the crowded waiting room, they found me a bed in the ER straight from triage.

They ran some tests.  Not surprisingly my white blood cell count was way up due to infection.  The ER doctor quickly explained that though they send home 95% of patients with kidney infections, there were multiple reasons he felt I needed to be admitted.  I’m immunosupressed from all the Prednsione I’m on, I have multiple chronic illnesses, the oral antibiotics at home didn’t work, and so on.

So I was admitted.

I received two different IV antibiotics over the next several days.  My veins weren’t happy about it and I went through 6 IVs in as many days.  But overall my stay has been uneventful.  Mostly I’ve been too tired to do anything but sleep.

I had several visitors who helped break up the monotony.  My mom and dad spent the most time here with me.  Sunday I was pleasantly surprised by a visit from two friends from church, Liz and Halee.  Then yesterday an old friend from high school Jenny paid me a visit followed by Christy and Brad from church.

I’ve been waiting this morning to find out the results of my latest tests and was just told they are good to go.  I’ve been discharged!  Yay!

I will go home with oral antibiotics which I will stay on long term to hopefully prevent yet another one of these kidney infections I seem so prone to getting.  It’s getting old – ending up in the hospital every few months from these things.  I’m hoping that these long term antibiotics will do the trick and keep me out of the hospital.

Fear.

Fear that I will end up back in the hospital.

Fear and OCD are a bad combination.  It’s bad enough to have a fearful thought in your head, but with Obsessive Compulsive Disorder you just can’t forget it.

I was woken by pain on Monday morning at 6am.  I felt like I was being stabbed in my left lower back and side.  An all too familiar pain.  The pain of a kidney infection.  AGAIN.  I’ve had far too many kidney infections the last few years.  Several of them have resulted in extended hospitalizations of a month or longer.  So to feel this familiar pain filled me with dread.

That is how the fear started.

I called my doctor as soon as the office opened.  He opted to put me right on antibiotics over the phone.  The first day was truly miserable.  I was in so much pain and my breakthrough pain meds were barely taking the edge off.  Yesterday I seemed to be feeling a tiny bit better.  But today I spiked a fever.

Not good.

Now the fear was escalating.  This infection was not heading in the right direction.  Instead it was following the well worn path that leads to the hospital.

I called my doctor who had me go get a urinalysis done to see where the infection is at.  I’ll get the result tomorrow.  The culture won’t be back though for a few days.

Now I wait and try not to let the fear take over.  But my thoughts are wanting to spiral out of control.

Kidney infection leads to hospital.

Hospital leads to latex exposure.

Latex exposure leads to anaphalaxsis.

Anaphalaxsis leads to another stay in the ICU.

Not fun.

Not fun at all.

Mental illness can sure make it more difficult to deal with a chronic illness.  But I’m trying to calm my thoughts.  Trying to channel my OCD into other happier obsessions.  But really I just want to cry because, though I try, sometimes I just can’t put a happy spin on life with a chronic illness.  Sometimes it’s not inspiring or uplifting.  Sometimes there’s no bigger picture.  Sometimes there’s no underlying lesson to be learned.  Sometimes it just sucks.

Sometimes I’m not a novel patient.  Sometimes I’m just a scared girl who doesn’t want to end up back in the hospital for the umpteenth time.

Sometimes things come crashing down emotionally.  I didn’t realize what an emotional toll being so ill in the hospital with a double kidney infection had until yesterday.  I didn’t let myself feel it in the midst of the crisis.  I guess I was in survival mode.  Literally.

But yesterday gave me a chance to reflect on it.  I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me.  And I started to cry.  All the stress I had been burrying so I could make it through the hosptial stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface.  I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things.  And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future.  And I cried because the future is so unknown and that is just plain scary.  This round of IV immunospupressants – Rituxan – doesn’t seem to have worked.  That is enough to make me cry in itself.  It is just so disappointing.  I am unsure what I should do next?  Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round?  Will it even work?  Should I try something even stronger?  Or should I not take the risk and learn to accept my life as it is.  Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with dibilitating and life threatening symptoms?  Is that how I’m going to be forever?  If this is how I am at 25, what will my life be like at 50?  Will I ever be independent again?  Will I need a caregiver forever?  And the scariest of all… how long is forever if I continue to be this sick?  Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels.  I can’t LIVE my life if I’m thinking this way all the time, so I don’t.  But I did need to get it out of my system once and a while.  The rest of the time I am thankful for what I still do have.  I am usually happy.  I have a wonderful caregiver in whom I’ve found a great friend as well.  I have the most wonderful and supportive community of online friends a girl could ask for.  I have a sister who does everything she’s able to support me.  A dog who loves give me cuddle therapy.  My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense.  A new haircut and a new outfit.