It’s a little after 1:00 p.m., and I’ve just finished talking with the head neurologist on the floor. She’s thrilled with the progress I’ve shown with the first steroid treatment. However, the headache lingers, and I’ve found new friends.
It seems the Copaxone lowered my immune system, so my usually tough as nails antibodies did not fight off the urinary tract infection forming in my body. It also caused a perfect habitat for yeast in my body (not to gross anyone out, but yeast is not just related to “that” area.) When I started the steroids, it ramped up cell production in my body – muscle cells, the cells necessary for reparation to my eye, and yep, bacterial UTI and fungal yeast cells. The steroids also cause my blood sugar to spike. So, I have gone from being on painkillers for my headache and steroids for the optic damage to a laundry list of drugs. Oral antibiotics, anti-fungal pills, steroids, my daily copaxone injection and now an insulin shot. Oy vey!
There is good news. Because I’ve done so well with the steroids, I may get to go home after treatment number two tonight. A home health nurse would come to my house tomorrow and hang the IV bag for me. My port would stay in until that third treatment is finished. After that, I will do a step-down steroid treatment, using oral prednisone to gradually decrease the steroids in my body.
For my newly developed, non-neurological symptoms, I would see my primary doctor asap. But I can’t make an appointment with him until I know I’m getting out of here tonight. Nothing’s ever easy.
I did have two wonderful visits today. One from someone who has become a dear friend quickly, who is also diagnosed with MS. This is one awesome chick who I admire – for her knowledge of the illness and her refusal to give into it. I draw my strength from her.
The second visit was from Oscar the Therapy Dog. He is such a cutie! (And much better behaved than my dogs!) His handler sat, and we talked for about 45 minutes. A delightful lady, an oncology nurse, who also volunteers her time visiting patients with her trained pup. Ends up, we know many of the same people. Philadelphia really can be a small place!
So, an upswing to my day that will hopefully have me sleeping in my own comfy bed tonight, with my own snuggly pups and kittens. All I have to do is promise to rest and to limit my sugar intake until I’m off the IV steroids. Doable.
I finally got to sleep around 1:00 a.m. on Tuesday night / Wednesday morning. I turned on iTunes, pulled up the library and popped in my earbuds. I pushed them in as deep as they would go, probably not the best advice for your auditory future, but desperation overcame me.
The constant beep, beep, cough from the monitoring equipment and other patients is enough to drive you crazy – with or without medically induced raging hormones. My nurse likened my current steroid treatment by saying, “It’s like being on your period multiplied by a hundred times.” Oh goodie.
And as if that isn’t enough to make any woman say, wow, this is some crazy stuff, and make any man realize it’s in his best interest to steer clear for a few days, add to the 100-times PMS to the obvious confusion over our time zone designation. Maybe I’m the one confused. But the hospital should really inform you, upon walking through the metal detectors, the sliding glass ER doors and over the threshold into the wing of the patient holding rooms, that we have just stepped into the HUP Timezone.
Forget Eastern Standard Time. Not only was waking up to the nurses’ hourly checks on my roommate in my semi-private room disruptive to my futile attempts at getting sleep, the 4:40 a.m. visit from my nurse racked up more tick-tock on my sleep debt. I mean, I’m glad she came in to give me a single anti-biotic pill and whisper, “You have a urinary tract infection and low grade fever. This will help.” Oh, thank God! Because that UTI just couldn’t wait until 7:00 a.m. And five minutes later, the lady from the labs came in for blood. ”Let’s not use your port. Let’s make a new injection.” That actually doesn’t bother me any more. I am so used to needles, it is hard to believe I am the same girl who once thrust a nurse’s hand off my rear-end after the needle was already in. I was young, but I remember the doctor’s visit and how angry the nurse was that I struck her.
After swallowing the UTI meds and giving up a few more vials of my blood, I put my earbuds back on and turned out the light. But it was too late. I was wide awake and the beeping grew louder “next door”. So, I sit here, and do my favorite things in life: write, listen to music and read.
Now let’s get rid of this headache today.
Staying upbeat and positive when you’re diagnosed with a chronic auto-immune disorder can be tough. Today’s especially a test of my cheery outlook on life. Not only am I in the hospital for the next five days, but an ample dose of high-powered steroids squash any attempts at being upbeat.
I have told only a handful of people I am here. I don’t want anyone to worry about me. Their worry will, in turn, stress me out. I just don’t deal well with others fluttering around me to make sure I’m okay. I prefer to do the worrying.
I am already annoyed by the inconvenience of this hospital stay. I am missing each of my final days of work before a two week vacation begins. I still need to pack and be ready for my flight to Germany on Monday. And most importantly, I have been planning my boyfriend’s 40th birthday party for months. A lot of months. I know things will still come together because my amazing friends will help me. To those friends, if you are reading this, thank you. I love each of you.
So, why am I here, at the hospital? Yesterday, I awoke to an indescribable headache. My Facebook status update described it the best I could: Did someone break into my room overnight and beat me in the head with a hammer? Nothing I did or took eased the hurt – for over 12 hours. When I woke up this morning, the headache was still there, in hospital terms, down from a 7 or 8 to a 3 or 4. A 3 or 4 still hurts – quite a bit.
On my drive into work this morning, I began to see everything out of the corner of my left eye fade to black. I watched as a cloud of thick, black cloaked my peripheral vision, creating an effect I can only liken to a Philadelphia carriage horse, wearing blinders to block distractions from passing tourists. By the time I got to work, the black cloud covered half my left eye. I could still see, but there was clearly something wrong, and my fear turned from my headache, which I knew I could endure until it subsided, to my vision. Headache goes away, that’s good. Vision goes away, that’s bad. Real bad.
I called my neurologist. She’s on vacation. Figures. Just my luck. But I was happily surprised when another neurologist from the hospital called me back – within five minutes. Surprised and concerned. They never call back that quickly. This must be serious, I thought. The doctor told me to get to the emergency room to be evaluated and to be ready for admission. So, I left work in the burbs and headed to the hospital in the city. When I walked into the emergency room lobby at 10:30 a.m., I looked around and saw only three people. This just doesn’t happen in a Philly ER. A nurse called me back right away, and the speed of the process relieved me. Then I sat, slept, sat, played Scrabble, and sat some more. My skull is throbbing, and nothing is alleviating the pain – not the prescription strength motrin, not the IV toradol, and certainly not the Tylenol with codeine.
Doctors finally admitted me around 6:00 p.m., the focus now turned from the axe that’s clearly stuck in the top of my head, to my faded vision. The nurse pumped in the first round of high-dose steroids. It’s one of five, that will last over a five day period. It’s Tuesday. You do the math. That puts day five of treatment on…yep, Saturday. Jim’s birthday party. Great. For an independent person who prefers to do everything herself, I’m going to really have to rely on some folks in a big way this time. Thanks, MS. You just suck.
This is my first time on the steroid treatment. I’ve heard about it, the possible side effects. So far, I don’t see purple monsters in my room. But even without the hallucinations, which evidently effect ‘older’ patients than those my age, I still feel the emotions nearly burst from my body – especially my mouth.
I’m in a semi-private room. That’s the hospital’s way of saying, you’re in the hospital, there is NO privacy. I’m in the locked stroke unit. (Evidently, many stroke patients wander. Unlocked doors could mean bad news – for the patient and the hospital.) The woman next to me, a precious older lady, has, from my best guess, suffered a stroke. She’s having trouble communicating – she can’t pronounce her words in any intelligible form. But that’s not annoying to me (the steroids haven’t shrunk my heart!). It’s her Snookie-sounding daughter who, with the right intentions, I’m sure, is talking so loudly at her mom. The lady didn’t lose her hearing. She just can’t speak clearly. And that curtain between your half of the room and mine, well, it’s not sound proof. Headache just got worse.
As I’m lying in my bed, a big man comes into the room wearing scrubs. He’s here to fix my table that’s stuck, and I look at him, I mean, it WAS me looking at him. But what I said did not sound like me. I said, “I’m going to shoot myself. She is so loud. I have a headache. I can’t take this. I need earplugs. And I want a private room.” Keep in mind, if I could hear her, she could surely hear me. The man laughed, said, “Private rooms are $500 a night. But I’ll be right back.” Within a minute, he WAS back, and with him, he had a handful of tiny, white and blue boxes. He said, “Just in case you need more. We don’t want you shooting yourself.” and he let out a deep laugh, almost a giggle. I opened one of the boxes, and there they were – bright yellow foam earplugs. God bless you, big scrubs-wearing man. I love you.
I’ve always fallen in love too fast. The earplugs didn’t work. Now all I could hear was a somewhat muffled Snookie-voice talking on the phone and then to her mom and then to the nurses. This time, I showed some restraint. I pulled out my laptop, opened iTunes, popped in the jack to my earbuds and cranked up Blink182. As loud as it would go.
I put a pillow over my head (I couldn’t reach the light, and light seems to make that axe wedge its way even deeper into my brain). I drifted off to sleep. I awoke to Jim tapping my arm, and I jumped. I had slept through someone coming in and taking my food tray off my adjustable table. Unhappy about losing a pint of milk and lemony iced tea, I pouted about the disappearance of my tray. Then, I started to cry.
It wasn’t just the tray. Everything hinges on these next few days. I want Jim to have the most incredible birthday ever so he’ll get over the silly idea that turning 40 holds some magical dilemma making you question where your life has taken you – and where it hasn’t. He’s the smartest, most handsome and simply awesome person I know. I cannot imagine a life without him in it. Period.
And work. I leave for Germany on August 22nd. This was my week to tie up loose ends in the Marketing Department. Already down a staffer and in the middle of a website rollout, we are uber busy. I didn’t even bring my work laptop with me, or I could have worked on brochure layouts while here for five days.
And home – I just want to be there. I have grown to love my house in the burbs. At first, when I found myself there alone so many days, I hated it. I could not wait to get out of its big, hunter green door every morning. And I did everything to not come home until it was time to sleep. But now, I find peace just being inside that door. The dogs and cats who run to see me, the hardwood floors that shine a bright hello as I scurry inside, the key rack where I always put my keys because, any other drop off location, and I’ll lose them. Everything about that house (except the yard work) is happy to me. It is home – so much unlike any home I ever had back in North Carolina. Happy, content, peaceful. What home should be.
Between the party details, the business matters at work and just missing my own bed, I grew amazingly grumpy and then cried. Jim would argue that’s normal behavior from me. But today, it was uncontrollable. It was as if I was outside my body, looking down, saying, “Be nice. Don’t stress. It’s silly to cry because you may not get a mani pedi before your trip.” Still, my psche didn’t listen.
I’m settling down now, emotionally at least. I can’t sleep. It’s 12:20 a.m., and I’m as wide awake as if I’d just made my second trip through the Starbucks line. I dread tomorrow, when I start this entire process over again. I think I’d rather see purple people in my room than to feel so out of control of my emotions.