Roid Rage, True Friends and De-Puffication

Flowers from friends and co-workers. And my cat, Moonspank.

Doctors discharged me yesterday around 5:15 p.m. My boyfriend, Jim, had me home by 6:45 p.m., in time to meet the courier delivering my final dose of steroids.  Now a three time high-dose infusion, this final gram of methylPREDNISolone went in around 11:00 a.m. today.  I’m jittery, all over the place, annoyed, snippy, energetic, bored, in a fog – you name it, I’m feeling it.  And so are those around me.

My biggest fear with this treatment has always been the effect the steroids would have on me.  There are two main reasons doctors admit patients undergoing this therapy.  The first is to monitor the patient’s physical reaction to the vamped up dosage.  Steroid medication, such as methylprednisolone, can weaken your immune system, making it easier for you to get an infection or worsening an infection you already have or have recently had. The second reason is so doctors can monitor a patient’s psychological reaction.  Hallucinations are rare, but occur.  Manic depression can set in, and it’s never good to be home, unmonitored and alone when that starts.  My reaction has been severe mood swings.

I never understood the term “roid rage” before this Tuesday.  After my first round of treatment, it was like I was out of my body, watching some crazy bitch lose control of her emotions.  I was annoyed by everything.  Jim was amazingly understanding through my snippiness, crying and more snippiness.  Actually, snippy is not the right word.  I would use the word mean instead.  It’s like I knew how I was acting but had no control over it.  Even deep breaths did not help.  Hopefully, the worst of this emotional roller coaster is over.

Yesterday was my final of two days in the hospital.  Jim’s mom, in from Germany, and her friend visiting from Texas, came to visit. They arrived just as the nurse hooked up my IV.  I felt so bad, meeting Maureen’s friend under such circumstances.  Luckily, both are nurses / nurse practitioners and understood what was going on with me.  I was proud of myself.  Besides my incessant chattiness, “evil Michelle” did not surface.  (Poor Jim encountered what I obviously suppressed during the ladies’ visit, later in the night.)  Felicia flew back to Texas this morning, and I hate I didn’t get to spend more time getting to know her.  Hopefully, we’ll have another encounter soon.  She was just a gem!  The three of us talked about all kinds of things, from my favorite Italian restaurant (which they dined at this week) to fungal infections and trips to the Reading Terminal Market.  I enjoyed my girl time with them, and the hour IV drip went quickly, despite several annoying stop and goes due to air in the line and me not keeping my arm straight for the fluids to go in.

Jim arrived just as they left, and he helped me gather my things for discharge.  The medical team sent me home with the IV port in my arm so I wouldn’t need a new needle stuck in for my final at-home treatment.  The nurse wrapped it in gauze and gave me what I called the “arm condom”.  It was more like a shower cap with two holes instead of one – elastic on both sides.  With this,  I could shower with the port still in.  Showers are love, especially after lying on a vinyl hospital bed for 48 hours.  You know how sweaty your backside gets, lying on vinyl for that long?  Even the white, cotton sheets don’t help cool anything down back there.

I have to say, the team at Penn was amazing – especially the nurses.  They were all so caring and quick to help me.  Of course, this could be because I was one of the only speaking patients on the floor.  (I was on the stroke floor – very depressing.)  The food was…well, hospital food.  But thank God it wasn’t any better.  When I got home, I weighed, and I gained six pounds in two days.  Ugh.  I have worked so hard to drop 13 pounds in the past few months.  Doctors, nurses and even friends assure me it’s just water weight and that it will go down as soon as I’m off the roids.  I hope so!  In the meantime, I’m trying to drink plenty of water and control my food cravings…which are up with the steroids.

I also have to watch my sugar intake.  The steroids make your sugar levels double.  I went from 83 (normal) when I was admitted, to 173 (high) after my first treatment.  That will go down once I’m off the therapy.  My roommate bought me sugar free chocolates.  Yummy!  I’m craving more now, but they are high in calories, so I’m watching my intake.

My friends are my saving grace through this entire process.  One of my first posts on this blog is “Reciprocity”.  If you haven’t read it yet, please go back and check it out.  It explains why I’m not used to getting back from anyone in my life, why being around large family gatherings is not only uncomfortable for me, but downright weird and why it is so hard for me to accept help from anyone.  This week, once again, showed me the amazing support I have in my friends – here in Philly and back home in North Carolina.

Last night, my co-worker and close friend, Michael, brought me flowers.  I felt bad – he brought them to the hospital, but during the rush of finalizing home delivery plans for the drugs, coordinating the pick-up of my oral steroids and just trying to channel my emotional turmoil, I forgot to text him that I was going home.  He called me from the hospital, where he was trying to track me down.  He later came to my house, brought me a dozen beautiful multi-colored roses and sat and talked to Jim and me.  What a wonderful surprise, all be it a diverted one.  The flowers are from my co-workers. So sweet to know you have support from people in your life.

Peter and Mamie have been Godsends through this.  Mamie’s questions to the neurologist were priceless, and quite honestly, questions I would never have thought to ask.  She has experience in this field, and I am so grateful for her support.  And Peter!  What would I do without this happenstance friend from work?  We became close after carpooling because we discovered we live near one another.  This week, Peter has saved Jim’s 40th birthday party.  He took care of things I just couldn’t from the hospital, and tonight, he’s even dropping off cots and air mattresses for friends coming into town.

This morning, Vicki, who I wouldn’t let visit me in the hospital because she’s pregnant with a little girl, came to my house with coffee (sugar free upon request) and a bag full of feminine products no pregnant woman should ever pick up in one purchase.  She also brought flowers and water and sat with me through my final infusion.  We watched Scott Pilgrim vs. The World, a stupid movie (but a good background distraction) while we sat with the home health nurse.  The nurse was a really nice guy from Bucks County.  It was fun chatting with him and watching TV while waiting for the hour long IV drip.

And my friend, Kenny, back home in North Carolina.  He took off work with plans to fly here to stay with me through the weekend – to help with Jim’s party, packing for Germany and to just have around.  But his steering column broke loose on his way to the airport at 9 a.m.  Thank goodness he is okay.  He won’t make it here, but I know he wanted to be here for me, and that means the world to me.  (I love you, Kenny!)

I am also grateful for the genuine concern from my colleagues.  Phone calls and texts to just check in and  not ask for anything from a number of my managers and colleagues – it just makes you feel better when things get crappy.

So, once again, through all of this, I have learned that while MS sucks, and it really does, it also shows you all of the beautiful things….all of the beautiful people…surrounding you every day.  I’m not a religious freak, but I can honestly say I am blessed.

Oral meds start tomorrow.  Let’s hope for de-puffication to begin asap!

Keep in mind, I had just lost 13 pounds before this treatment. I'm a little sensitive about this! But I also know this is silly and vain. I have friends beating and losing to cancer. My life is okay, and my face is the least of my worries.