The Journey

This blog was born out of desperation and fear.  I needed to do something, and my list of abilities at the time was very short…so I began telling my story.

Me and my amazing Husband

Welcome.

My name is Mischa, and on November 26th, 2014, at the age of 27, I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy, a very rare autoimmune disease where my immune system is attacking my nervous system.

Taken days before my first symptoms

This crazy journey all started back at the end of September 2014, when my husband and I found out we were expecting a second miracle baby in the spring (I was told at 19 that I may never have children).  Ten days after the good news, I started experiencing numbness and tingling in my feet at night.  The feeling was always gone after an hour of being awake each morning, so I didn’t think much of it.  After a week or so, the feeling moved into my hands as well, and became constant rather than only at night.  This began a long line of doctor’s visits.

After having over 10 vials of blood drawn, both my midwife and primary care doctor had no idea what was wrong.  Every test that was run came back negative or normal.  During the 2 weeks of visits with my primary care doctor, I also started noticing that life was getting harder to do…going up the stairs, lifting my toddler, and even carrying my purse (which I knew was heavy, but not that heavy) were becoming a challenge.  Now I was officially concerned, but still optimistic that the doctor would figure it out; we just have to run the right test.  I’m fairly certain this was also around the time of my first ER trip, for IV fluids, in the hopes that this was just a bad case of dehydration.  No such luck; the fluids had no effect.

Each time I had my blood drawn, there were at least two days of waiting for the phone to ring.  When the tests came back negative, more were ordered, and the waiting process began again.  During all of this, my muscle weakness and neuropathy (the numbness and tingling) continued to get worse; my walk became an awkward limp, and stairs became almost impossible.  I also realized my core was getting weak because I could no longer roll myself over in bed without a lot of effort.

Cue the fear.  Why couldn't they find an answer?  What on earth was happening to me?

After he felt that he had done all he could, my primary care physician referred me to a Rhumatologist. More waiting. At this point, I was so weak that I could no longer care for my son Eli, so we started staying with family and I began getting rides to all of my various appointments.  I started doing my own research trying to figure out what could be wrong with me; after countless hours, I came across CIDP.  It fit perfectly.

The Rhumatologist completed his evaluation, determined that whatever I had was a neurological issue, and referred me to a neurologist.  More waiting to get an appointment.  

The neurologist, Dr. S, only spent 10 minutes with me before he came up with a tentative diagnosis of Guillain Barre Syndrome (very similar/a cousin to CIDP).  He ordered an EMG and a Nerve Conduction Study, which he said there was an opening for that afternoon in his office.  

Progress!  Hope! Waiting.

The EMG/NCS tests were performed (my first painful medical test of many), but the results were normal.  

Wait. What? 

Disappointment would be an understatement.  Dr. S said he “would have put money” on that being the correct diagnosis, apologized, and referred me to the ER of a very large hospital for a spinal tap.  The spinal tap is a more conclusive way to diagnose GBS or CIDP when other tests have been normal or inconclusive.

I spent the next three days at a very big well known hospital, had countless blood tests run, spent hours talking to psych (Are you SURE this isn’t just stress?? Yes, I'm very sure.), and was discharged with no diagnosis.  

Their neurologist only saw me once; he was sure this wasn’t GBS, and never came back.  The psychologist asked me what I thought was wrong, and I suggested CIDP, explaining that it fit my symptoms extremely well.  Still, the neurologist did not agree and chose not to see me.  

A spinal tap (or any other advance testing) was never done.  I left that hospital feeling worn down, exhausted, and more frustrated than ever.  My body was falling apart right before my eyes, and from where I was sitting (laying) nothing was being done to change that.

Praise God for my husband!!  Thomas took one look at me the day after I came home (my mom picked me up form the hospital), realized I couldn’t function (no walking, standing, getting myself to the bathroom, or sitting up or rolling over in bed...and definitely no stairs), and brought me to another hospital that night.  We spent the entire car ride trying to figure out how I had been discharged in such a terrible state.  I still don’t know the answer to that.

Next stop was the Wonderful Hospital.  I was admitted right away, and they immediately began running more tests.  They started with more blood work, of course, but when that all came back normal they tried something else!  This was pretty exciting; could I actually gets diagnosis here?  Hope came creeping in again.

Over the next week and a half, I underwent a second EMG/NCS, this time with a Neuromuscular Specialist (yay!!!), two MRIs, and one (extremely painful) spinal tap that was later titled 'traumatic' after the doctor hit a blood vessel, making those results inconclusive.  The "headache" I experienced after my spinal tap was unlink any other pain I have ever felt in my life.  It was honestly worse than childbirth.  I spent the hours following that test in the dark, screaming in pain with tears streaming down my face as the nurses watched helplessly.  Because of the pregnancy, I was unable to receive anything stronger than Tylenol, which the nurses said probably wouldn't do much.  It was terrifying and frustrating, but also the most powerful encounter with God I have ever felt.  I fully believe He was with me in that room, I could feel His presence as I sang hymns through the tears and screaming.  It was agonizingly beautiful.  God was there.

The MRIs were not painful, but emotionally terrifying (small spaces and I are NOT friends).  The EMG was about as painful as the first time, but this time something on the test came back abnormal.  I wanted to cry tears of joy when that happened.  This was a clue; proof that thee was actually something wrong!  One step closer to an answer!  

After carefully reviewing every test result, and looking at my symptoms (which continued to worsen), I was given a diagnosis of CIDP.  The prognosis varies wildly from one person to the next, but we do know this disease is something that I will be dealing with for the rest of my life.  Proper treatment can improve the symptoms and keep a relapse at bay, but it is no guarantee, and can lose its effect over time.  Most patients with CIDP will need recurring treatments (either in or out of the hospital) for the rest of their lives. 

In all of this, I spent nearly a week unable to see or hold my baby boy.  My heart broke on those days, and the nights were filled with many tears.  When he did come to visit, my muscles were in too much pain to hold him.  It was the hardest thing I have ever gone through.

Dr. S was right weeks ago (GBS is very closely related to CIDP and the treatments are the same).  I was right.  If I had been properly diagnosed when I first suspected this disease, I would not have needed so many painful tests and my body would not have deteriorated to such a terrible state.  Disbelief washed over me, but so did hope..

After speaking with the team of doctors, they determined it was best to try a five day course of IVIG (Intravenous immunoglobulin) treatments.  A final blood test would need to be done to ensure I wouldn’t be allergic to the treatment, then we could begin.

Waiting. Hoping.

I was relieved to have a diagnosis.  Physically, I was weak and broken...terrified of this new, uncertain life.  I was hopeful that I would walk again.  A little angry and hurt, but determined.  The tests came back happy; I was not allergic to the treatment and could begin as soon as the hospital was able to get the medication.  It was Thanksgiving weekend.

The first day of IVIG

It wasn't until day 4 of the 5 day treatment that I felt any change.  That day, I was able to bend my leg about 2 inches.  It was a huge victory!  The treatment was working!!

Day 5 was even better.  I was noticeably stronger, and was able to stand (with assistance from two physical therapists) for the first time in over a month.  Finally, the light at the end of the diagnosis tunnel.  Relief.  Hope. More determination.

Once my 5 day treatment was complete, I was told I could be discharged to a rehabilitation hospital.  One step closer to being home with my family.  I spent the next 2 1/2 weeks at the National Rehabilitation Hospital in D.C. doing acute physical and occupational therapy for at least 3 hours each day.  I have never worked so hard in my life.

The therapists and doctors were amazing; always encouraging and uplifting.

The loneliness and depression were crippling.  Hours of exhausting work each day, and I was still unable to roll myself in bed, or stand for more than a few seconds.  My blood pressure was also extremely low, making therapy unsafe and impossible some days.  I felt like my body had completely betrayed me.  Didn't it want to be home with my boys?  I have been a singer for my entire life, and now my body was too weak to even sing.  I was depressed, confused, and angry.  Patience and self acceptance became a huge part of my journey.  Prayer became the only way to survive.  Then God sent me an angel.  Her name is Hallie, and she was my new roommate.

We became fast friends, and had so much in common, much more than favorite colors or music…real, meaningful things.  In fact, we were so similar that we accused the nurses of comparing our charts before we arrived!  Halle was there to listen to my fears, to pray with me, to encourage me, and give me hope.  She reminded me it was ok to feel all the emotions I felt, that I didn't need to be brave all the time.  She told me her story, and I admired her courage.  She is an amazing soul, and I am so thankful to God for bringing us together when we needed it most.

Hallie was discharged before me, which made for some pretty lonely nights, but I had a goal.  After spending Thanksgiving in the hospital, I knew I wanted to spend Christmas at home, even if it meant laying on the couch all day.  I worked as hard as my body would allow for 2 1/2 weeks, and was told two days before Christmas that I could go home.

By the time I was discharged, I had graduated to walking with a rollator (a walker with wheels) for very short distances, and using assisted devices to dress myself.  Rolling over in bed took a lot of effort, but it could be done.  I was embracing a new me, a new normal.  

Once home, I continued to see in-home physical and occupational therapists, and now continue PT as an out-patient.  I continued with their help to gain some of my strength back, and can now safely be a stay at home mom for my son once again.  

I still struggle with endurance and weakness, and there are still many "normal" things I cannot do; I have needed to close my business as a wedding and portrait photographer, and let go of many other things...but I am blessed.  I have a new found joy for life that I didn't know was possible and can only be explained through Christ, and my relationship with God has been taken to new depths I never imagined.

This is my story.  God's plan for my life unfolding.  I will choose joy.

There are moments of victory, and moments of sorrow, but through it all God will be praised.