3W44, Abington Hospital

Abington Neuro Wing. Round Two. Day One.

Everything felt different this time.

There were no flowers. There were no gift baskets.  There were no streams of well-wishers flowing in and out of my room.

It was just me, in the Neuro wing at Abington Hospital, wondering if this was the start of the rest of my life dealing with GBS.

It started last week.  I woke up Thursday morning feeling pretty lousy.  My head was congested, my legs were weak, and I felt a wheeze in my chest that is always a signal that I was getting sick.  Yet, I still got up at 5:30am, got dressed and headed to Lithe, as Thursday is always my favorite class, Barlesque. Lots of Barre work, dancing, cheering, all while wearing resistance bands.  Love Barlesque.

I felt pretty good when I got to class. I took extra Vitamin B and C that morning, and drank my trusty FRS drink to give me some extra energy.  I made it through the whole class, and I must say that my moves are getting much stronger.  My plyos are more controlled, my lunge sequence is better and my endurance is at an all time high since coming back.  I still can’t do the pushups very well, and I can only do a half-burpee (aka squat thrust), but my confidence was soaring.  I got home around 8:45am and since I don’t work Thursdays, I went back to sleep.  And I slept most of the day.

When Friday morning arrived, I felt even worse.  I cancelled Lithe that morning, and just got dressed for work.  I looked like crap. I felt like crap.  There was no denying I was coming down with something.  Feeling down, I texted Katherine (my nurse BFF and no sugar coating, give it to me straight friend) to tell her that I was sick and was so upset about it.  She texted back and told me she was sick too.  She gave me this sound medical advice,

“Drink plenty of fluids.  Take Advil.  Eat a candy bar. STAT.”

And she texted me the picture of the Skor bar that she had already purchased herself.  Since I always follow nurses orders, I went to Target after work, bought cranberry juice and ginger ale, Pepperidge Farm Raisin bread, and two candy bars (I needed a backup)– Snickers and Junior Mints, my most favorite candy Ever.  I was on my way to recovery.

GBS Rocks!

Saturday came, and I cancelled Lithe AGAIN.  I didn’t have much energy on Saturday, but had a short surge of it, so I managed to be productive by cleaning out my utility room, and my closet, and donating tons of clothes to charity.  Then, proceeded to go back to sleep.  I knew something was wrong because I haven’t slept like this since I got out of the hospital in October.

Sunday arrived, and Lithe seemed to become a distant memory as I cancelled class again.  I felt sad that my body was so tired, as I know that the only way I’m going to get stronger is by working out.  And it’s hard to work out when your body doesn’t want to move.

The scarier part of this was that I was losing feeling in my left leg and arm, Again.  They would fall asleep. Then wake up.  Then tingle.  Then feel like dead weight.  You know that feeling when your arm falls asleep and it feels like it weighs 100 lbs?  I had that consistently from Saturday on.  It was scary, but I knew that I just needed rest and fluids.

So I didn’t worry, but I also didn’t do anything.  I cancelled plans with friends on Saturday.  I missed Brunch with my favorite non-uncle BZ on Sunday.  I practically missed the Flyers series clinching game too, but I battled through that.  

If you were to look at me, you would never know that I was sick.  You might even think that I was faking it because on the outside, I looked “normal”.  However, if you were to walk behind me, or near me, you would see the challenges I was having walking.  My leg gave out on me a few times, but I caught myself.  I fell down the stairs outside my bedroom, but caught myself after missing 4 steps, so no real damage was done, except to my confidence.

Breakfast of Toasty-Os and Fruit.

I pushed it all aside, and went to work on Monday.  As I sat at my desk, I felt the my strength diminish in my body.  I went to grab my glass of water with my left arm, and could not reach it.  I went to lift the glass with my hand, and could not grip it.  I went to stand up from my chair, and could not do so without pushing off from my desk.  I decided not to panic but face a scary prospect.

I was having a relapse.

I called my Neurologist at Abington, and he told me to come to the ER to be seen. He’d be there to examine me.  I told Janet, my trusted colleague, not to panic but I was heading to the ER.  She told me she would take care of everything at the office.  I told her I would be fine, and I’m sure it was just the flu.

I headed home.  That’s right. I went home before I went to the ER. Some things you learn from being in the hospital. If you are going to be there, you need a few things from home that will make you more comfortable.  And I had a funny feeling that once I saw Dr. Weisman, I would earn an admission ticket to the Neuro wing.  So, I calmly went home, and packed a bag.  Presumptuous perhaps, but I prefer Prepared.

I put my PJs that Bobby and Claire bought me in the bag.  I packed my leggings, since the hospital is always freezing.  Hairbrush, toiletries, floral skin moisturizer (because you know showering is not a priority in the hospital, ewwww). My glasses.

I also packed some things to keep me busy- including my new favorite gift, the Kindle!  I downloaded 10 books for Kenya, and I knew I had a few left.  Thanks Mom! Great Christmas gift that I will put to good use.

Finally, I packed my comfy blanket, my Phillies hat (because my bed head is not cute) and a few t-shirts, including my handing King’s College Monarchs shirt (I am always representing) and my Flyers Tee.

Flyers T-Shirt that I packed.

Also, I got a quick shave of the legs in. I know you are all rolling your eyes right now. Why is she doing all of this when she should be in the ER.  I’ll tell you why. You are soooo exposed in those flimsy gowns in the hospital. Especially your legs.  Since I had very little feeling in my legs, I know they would be examined by dozens of nurses, and doctors over the course of my expected stay.  And, to top it off, I would be on Blood Thinners. So no shaving for a while anyway.  So, Yes. I took 5 minutes to shave my legs since no one likes stubble, do they?

I grabbed my lucky Coach purse, made sure I had my insurance card in there, and I jumped on the PA turnpike headed back to my least favorite building, Abington Hospital.

I parked in Zipley Garage, and made my way to the ER.  I left my bag in the car because that would look really silly, me checking into the ER like I was checking into Hemingways Resort.

And, like the first time, they were expecting me.  It’s an unnerving feeling to walk into the ER, and they say, “oh, yes, we’ve been waiting for you”. I didn’t tell them that I took a little longer because I had to pack and shave, I just smiled and went back to the ER.

As luck would have it, the nurse taking my vitals remembered me from the first visit.

“Are you the same nurse that I had back in August when I was first diagnosed with GBS?” I asked.

“You look familiar. Wait, oh yes. I remember you.  I held your hand when you had the LP (lumbar puncture). You cried the whole time. You were in room 306.  Of course!” she replied.

“Yep.  That was me. The cry baby,”  We laughed.

After a short wait, I was brought back to my “room” in the ER.  Room 309.  They gave me the dinky gown, and said it would be probably 2 hours before I saw anyone, so get comfortable.

I started to take off my sweater, when in walked the ER doctor.  Oh Crap, I thought.  He’s here already.  I’m screwed.

After introducing himself, I giggled. His name was pretty funny, and clearly, I’m 12 years old.  He said he read my entire chart and he’d already been in touch with my Neurologist.

“Very impressive chart, Suzy,” he commented.

“Go Big or Go Home, Right Doc”? I replied with a smile.

“Well, you certainly went Big,” he agreed.

Feel free to roll your eyes again at this. I realize that I am a massive dork, but I find that if I am smiling and laughing, I am not panicking.  So, even as he is examining me and telling me that I am probably having a relapse, and that I’m being admitted right away, I am still laughing and cracking jokes.  While he is saying that I’ll be needing another spinal tap and will probably start me on IVIG right away, I’m chill.

“You guys didn’t get enough of me the first time?”

“You guys need to bring down the age of the Neuro Floor?”

“You guys just want to stick more needles in me, eh?”

“That LP needle isn’t coming within 100 feet of my spine, so good luck getting me to roll over?”

Could these socks BE any uglier?

And so on and so on.  The ER doctor left chuckling, and probably thinking that while we have her, we’ll do a psych evaluation too.  No one should be this silly while sitting in the ER.

The lesson I continue to focus on daily is to stay positive. It’s not really that hard, because I’m not wired to be negative.  I don’t think the worst until someone tells me that the worst is actually happening.

So many people get so caught up in the What Ifs and the Worst Case Scenarios that they lose focus and cause more angst than what’s necessary.  I’ve done that in the past, and the What Ifs are typically more upsetting than reality.

If you say the sky is falling, I will believe it when I see the clouds in my front lawn.

If you say that I am having a relapse, I’ll believe it when I can no longer walk on my own.  And if I can’t walk on my own, I’ll do the IVIG, I’ll go back to Bryn Mawr Rehab, get Joe and Aimee as my therapists, and be back on my feet in no time.

Until then, I choose Hope and Optimism.  Oh, and Laughter.

I made the prerequisite calls to my family.  This time I started with my mother. I learned my lesson last time.  Call your mother first.  Always.

My picc line was put in, blood was drawn, and I was being rolled through the building to my temporary home, 3W44.  Clad in my fancy gown, and those ugly socks, I laid in my bed waiting for Neuro to confirm my diagnosis.  I ordered Cable (so sad that it costs me money to get cable at the hospital, and it doesn’t even include Comcast!).

I checked my watch.  It’s about 6:30pm.  The team was very quick with me.  I checked into the ER around 3:30 and was already in my room at 6:30.  I was watching NCIS re-runs when my Neurologist walked through the door.

“Hey, it’s really nice to see you!  Well, not like this, of course”, he commented.

“Well, I was getting bored, so I decided that a nice visit to the hospital would shake things up a bit for me,” I chuckled.

We both laughed, and then my delicious dinner tray arrived.  He brought it over to my bedside while I groaned.  He looked at it, and told me that it didn’t look so bad.  Um, are your serious?  I told him Abington isn’t known for their food– It’s no Stephen Starr, he commented, but you need to eat something

He asked me to tell him exactly what happened.  As I recounted the days leading up to my admittance, his best guess is that I had a viral infection that walloped my body.  He also assured me that based on my strength tests, that he is hopeful that it’s not a relapse.

Essentially, the myelin sheath (the lining around the nerves) was still frayed.  Picture a cord that plugs in your laptop. If the cord is frayed, and you plug it in, the transmission won’t go through correctly or consistently because of the damage.  So you get a new cord.

Since I can’t get new nerves, I have to wait for mine to heal.  When you get sick, even with something like the flu, a foreign agent has now entered my already weakened system and is inhibiting the signals.  So not only are my nerve-endings faulty to begin with, but now they are clouded.  So everything is short-circuiting.

A course of treatment could be the IVIG, again, but since it’s an intense therapy, he’d prefer not to put my body through that again, unless absolutely necessary.  No 5 day treatment, no night-sweats and hair loss, no LP!

So, we agreed that the best course of action was for me to be under observation at the hospital, until my strength came back.  They also wanted to rule out MS, so I would undergo another MRI as well.

My new Hospital Tag, and my Lucky Bracelet from Popo's.

Doctors Orders?  Rest.  Fluids.  Food.  I need to stay hydrated and I need to rebalance my system since getting sick.  And I need to sleep.  While I am sleeping is when the damage heals.  Easy enough.

Michael arrived a short while later with jugs of water and Gatorade, a delish turkey sandwich from Wawa, and my overnight bag that he grabbed from my car.  We sat and chatted for a while.  I told him I was fine, and that I would recover, and that this was just a hiccup.  I refused to relapse.  I wasn’t going on the IVIG, unless absolutely necessary.

He told me that he could tell I was going to be okay because I was so chatty.  I’ll take that.  I got up and walked him to the door when he left to show him that I was going to be okay.

As I settled into what I thought would be a good night’s sleep, I just couldn’t get there.  I ended up staying up all night long.  I was awake for all of the strength tests that had to perform every four hours, and for all of my vitals.  They couldn’t give me anything to help me sleep my first night, so I just turned on the TV and watched a boring loop of the Yankees-Angels game.  You would think that the Yankees alone would put me to sleep.

I was rolled into the MRI around 6:45am on Tuesday.  After a good dose of Adavan, since I am painfully claustrophobic, I was laid on the bed to be pushed into the machine.

When asked what type of music I’d like to listen to, I replied “Mike and Mike in the Morning, please”.

“Who?  Uh, you can have B101, 102.9 WMGK, blah blah”  Fine, I’ll take B101 and get my Michael Bolton groove on.

After 45 minutes of Boring Bolton and some serious clanging, I was done.  Rolled back to my room for yet another stimulating day of laying in bed, doing nothing.  I finally fell asleep, and woke to find my Dad in my room.  Always a reassuring sight.

He had brought the Kindle Charger (as that was the one thing my GBS brain didn’t pack!).  We talked for a while, and told him about my night, the MRI, and what the neurologist thought.  I told him I wasn’t having a relapse, but if I did, I’d battle through it.  I did it once, I’d do it again.  After a few hours visit, he was on his way to get JP.

Poor JP.  JP called me Saturday night around 11pm.  He had been with my mom and sister, and I guess they told him I was home sick.  He called me, worried, and wanted to know if I was going back to the hospital.  I told him I was fine, and that No, I wouldn’t be going back to the hospital.

Then, he called me on Monday while I was in the ER.  He asked me why I was back in the hospital, after I told him I wouldn’t be going back there.  He said “Sue, will you be okay?”  I told him I was going to be fine, and that my leg was bothering me again. I would be home soon.

The shoes I walked into the hospital wearing.

He the proceeded to tell me that he wouldn’t be available to come visit me at the hospital because he had to get his hair cut, and then he had to go to work.  I told him that was fine, and he could visit me when I got home.  JP doesn’t like the hospital, and it upsets him to see me there.  His only associations with the hospital are of my grandparents, and we lost them both at Abington.

My MRI tests came back negative for MS.  Huge Relief!

However, the strength and numbness in my left leg and arm seemed to be getting worse.  I also had a migraine from not sleeping well.  What I learned from the doctors is that my body was on overload.  My nerves were on overload.  Not only did I have GBS, but I had the flu.  And a migraine.  And I was sleep deprived.  So when a system is on overload, it tends to shut down.  So once again, we decided to wait and see if with rest, fluids and food, I would regain my strength.  If I didn’t, I’d be put on the IVIG regimen.

I slept most of the afternoon on Tuesday, and much of the day on Wednesday.  I didn’t realize how tired I was.  The fatigue factor with GBS is pretty debilitating.  It’s hard to describe to anyone who hasn’t been through this.  If you’ve ever had Mono, you know how the fatigue is devastating.  You have no energy.  and when you do, it’s spurts of it.  I’ve had to cancel plans with family and friends over the past few months because I am just so tired.  And when it hits, it’s brutal. I could be fine for a few hours, then fall asleep.

I kept the nursing staff on their toes too, unintentionally.  I have low blood pressure to begin with.  I tend to run 100/70 on an average day. It’s a blessing I know, but it’s genetic.  So, when I get sick, it drops.  And when I’m sick and I’m asleep, it drops even more.

So, you can imagine the angst I caused the night shift when they checked my BP at 3am and it was 78/50 or 85/55.  They were convinced that the machine was broken.  I told them I have low BP, and that this was normal for me.  So I sat up, started talking to them, and it jumped back up to about 95/65.

Then the heart monitor apparently sounded an alarm as well one night.  My heart rate dropped to 40 bpm.  They notified my nurse, as they wanted to check me.  My nurse told them I was sleeping, so it wasn’t a big deal. And it was a steady 40 bpm, so it wasn’t anything to worry about.  Who knew I could cause so much drama while I was sleeping 🙂

When I talked to Neuro on Wednesday, he gave me two scenarios.

First, I was exhibiting symptoms of chronic inflammatory demyelinating polyneuropathy (CIDP).  The chronic version of GBS.  I would have this for the rest of my life, and I would have episodes like this forever.  Very treatable and very manageable.

Second, I was having an episode as a result of having a viral infection.  I would get my strength back as the virus exited my system.  I would need to do some physical therapy to get my strength back, but I would be fine.

I told him that I chose what was behind Door Number Two.  This was an episode that was treatable.  I told him that I wanted to remain optimistic because if I stay positive and put positive vibes out there, then I would recover fully.

He smiled, and said that if I chose Door Number Two, then so would he.  However, I would need to schedule routine check ups with him and he would still monitor me closely in case Door Number One opened.

I fell back asleep for much of the day Wednesday, and woke up to find my Mom in my room.  With a Primo’s Turkey Diablo, lots of water, and a big hug.  We watched Idol, chatted for a while, and as soon as she left, I was asleep.

Thursday morning, I woke up with full strength back in my left and arm, and both limbs felt light and limber.  I was taken to PT to do further strength tests, and I was throwing a ball while standing on one foot, and was doing squats without holding on.  (Joe and Aimee would be so proud!)  They recommended further outpatient PT, and told me that I was not a Fall Risk anymore!

I walked back to my room with my PT, and started to gather my things.  I knew I was going home today.

Neuro came in and was very excited to see my progress.  If this had been a relapse, I wouldn’t haven’t recovered so quickly.  However, I was told to take it easy.  I am still recovering from an auto-immune disease, and should allow my body to rest and heal.  However, I was told that if I can survive my trip to Kenya 6 months from diagnosis, I can surely fight my way through anything that GBS hands me!  I’ll take that!

Flyered Up, Even recovering from GBS!

I got all Flyered up as I left the hospital. I replaced my ugly socks with my orange flats, and took a picture to document yet another Win in the Suzy vs. GBS battle!

So, I’m home now.  I am pretty tired.  As I sit here writing, my leg is pretty weak, and my left hand is struggling to type at times.  However, I know that this, too, shall pass.

There isn’t much else I can do to prevent getting sick again.  I can stay out of situations where there are other really sick people.  I can give my body the sleep it needs to heal.  I also need to keep any stress out of my life, because stress is so unhealthy, especially on an already weakened system.

I’ll take some time off from Lithe, and probably work from home more to give my body a break.

This time at Abington was different.  Not one tear was shed while I was in the hospital.  I held onto the belief that this was just another bump in the road to my recovery from Guillain Barre.  I know that God only gives you what you can handle, but I could really use a timeout from all of his delegating.

I continue to smile and laugh on this ridiculously challenging journey I have been on.  It’s tiring and frustrating, but I know, in the end, that the lessons I’m learning will forever change me for the better.

Let’s Go Fly Guys!

Thank you for joining me on my journey.

Suz

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4 responses to this post.

  1. Posted by Emily on May 4, 2012 at 10:08 PM

    You are one brave chick! It takes a lot to rid a patient’s head of those “What If” voices. I am so glad you are not wasting any energy on that.
    Continue to rest, rest, rest. It is exactly what your body needs, along with the candy bar. Love, Emily

    Reply

  2. Posted by Carroll Kelly on May 1, 2012 at 4:57 PM

    Wow, Suzy! My mom and I just read this together and we are astonished by your strength and laughing at your wit. You’re the best! Onward and upward! : ) – Carroll Kelly

    Reply

  3. Posted by Pamela on April 28, 2012 at 9:49 AM

    Bravo! Ultimately a happy ending on many fronts. Rest, and now rest-assured–no MS, no relapse, no tears! Awesome.

    Reply

  4. Posted by Sandy rynard on April 27, 2012 at 9:54 PM

    Hi Suzy, so sorry that you have to go through all this, but happy you are strong enough to beat it. Go get them girl!!!

    Reply

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