Middle of the night, drug-induced ramblings....

Just over a month ago I began a new MS modifying drug called Avonex. If it wasn’t 3am, I would discuss what this is and how it works. All I know right now is that I haven’t felt this miserable in quite some time. My entire body hurts from head to toe. Even my eye balls hurt. It’s an intense ache, sort of like body aches from the flu, only much worse. And the nausea…..oi. I’m fairly certain my ham fried rice from dinner will be making a reappearance any time now.

I have no idea what to do with myself. I’ve taken the maximum dose of Aleve and won’t be able to take anything else for hours. When I’m not tossing in bed, I’m pacing the house. I hurt too much to even sit still for very long.

Worst of all, it’s Easter weekend. Why does it always have to hit me the hardest on holidays? But this is just another reality of living with MS…the treatment side effects. This should pass by Sunday morning. At least, I pray it will. In the mean time, I am trying desperately to find distraction. So far, nothing is working.

It’s going to be a long weekend.

Part 10 : This Is Spinal Tap

On the list of diagnostic procedures, the MRI was now checked off.

Seeing the inside of your brain is an interesting experience; seeing that something is wrong with it is another experience entirely. To actually see pieces of your brain that are literally deteriorating….it’s disquieting. Those images made everything I had been experiencing….the pain, the vertigo, the numbness, the loss of hearing and the use of one of my hands….all concrete. Those symptoms were always real, always frightening. But they were symptoms and nothing more. These images were tangible. This was something; no longer a theory. My brain, the hub that kept the clockwork of my body working in continuous harmony, was damaged, having been attacked by the very body it inhabited. That knowledge held some real gravity.

Based on the evidence revealed by the MRI, Dr. M. felt fairly confident that I did, in fact, have Multiple Sclerosis. Everything fit; there were no holes in this theory…just in my brain. But Dr. M. didn’t mess around. She wanted to completely rule out every other possibility before settling on a final diagnosis, which meant more blood work and a spinal tap.

Ugh. A spinal tap. I’d heard the horror stories and the idea of my spinal column being tapped like some maple tree made me queasy. At least with the maple tree you can enjoy some nice pancakes afterward; I doubt spinal fluid pairs as nicely. As such, I gave into my anxieties and decided to postpone the procedure until after the holidays. It was just too daunting to face and I wanted to delay it as much as possible.

In hindsight, I should have just got it over and done with. If I thought putting the spinal tap off would make it easier to get through the holidays, I was sorely mistaken. I could think of nothing else over the next four weeks and therefore subjected myself to mistake number two: internet research on the procedure. Accounts of everything from horrible pain to spinal cord damage to paraplegia did nothing but amplify my fear. Though many credible medical sites cited these potential risks, they were rare and unlikely. Still, they happened. And that was enough for my anxiety to feed on.

The subsequent holidays were rough. I still hadn't fully regained the use of my left hand and I still had residual pain and numbness throughout the left side of my body. Still, I did my best to stumble through them as best I could. What else could I do? As the clock struck midnight on January 1, 2007, I closed my eyes and made a wish.

* * *

I would not be so foolish as to tempt fate by assuming that things could not possibly have gotten any worse at this point. But fate, it seems, could not simply let me be. The day before my spinal tap, left side of my body still numb and throbbing and left hand still not functioning, I awoke to discover the right side of my face was numb. Upon inspection in the mirror, the right side of my mouth was slightly drooping and when I tried rubbing my lips together, the right side did not move. I also noticed my right nostril didn’t move either, nor did my right eye. I couldn’t even blink it. The right side of my face was paralyzed.

I had just been Punk’d by the Universe. The Universe was off in a trailer somewhere, laughing with Justin Timberlake as they watched me on hidden camera. Fucking hilarious, guys. Seriously.

As my mind was searching for new expletives to do the situation justice, a thought occurred. Isn’t drooping on one side of the face a sign of a stroke? Ugh, was I really back to another stroke scare? I decided that, like before, this was another manifestation of my now-not-so-mysterious illness and since I was seeing Dr. M. first thing in the morning anyway, I would just let it go for today and hope for the best. That night, I had to Scotch-tape my right eye shut to get some sleep.

At 6:00am the next morning, I arrived at Dr. M’s office completely sleep deprived and with a sick feeling in my stomach. Forget butterflies, I had elephants parading through my tummy. I was escorted to the exam room and Nick and I were left alone while I changed into a gown. As I sat on the exam table waiting for Dr. M. to return, my fear finally got the better of me and I broke down sobbing. Uncontrollable, ugly, breath-stealing sobbing. I attempted to pull myself together before Dr. M. returned, but it was no use. I couldn’t stop the tears. I sat there crying as I once did, a frightened little girl who didn’t want to have to get a shot. As Nick hugged me, I felt juvenile. I was too old to behave this way. I told myself that I could handle this. I wasn’t entirely sure that I could, but I kept saying it to myself anyway. It didn’t help.

I was still crying when Dr. M. returned. When she asked what was wrong, all I could muster saying is “I’m scared”. When she asked what exactly I was afraid of, I realized I wasn't entirely certain. Pain? Something going wrong? Both? She then sat down with me and talked me through the entire procedure step by step….what to expect, what she would be doing and when, how long it would take and that she would be talking me through it every step of the way. Dr. M. explained that she’s done this procedure hundreds of times and was very comfortable with it. She also assured me that most people who come in for this procedure are pretty freaked out, but usually leave laughing. I wasn’t sure I bought that last bit, but her reassuring voice and her willingness to slowly and thoroughly talk me through this was comforting and I was able to catch my breath and cease the tears.

I sat on the table, legs folded with my back to Dr. M. Nick stood in front of me and I held his hands with a bone-cracking grip. Dr. M. was first going to numb the area and said I would feel a few tiny pokes and a bit of stinging as the numbing medicine went in. And she was right….the pokes I felt were very small, nothing I would even quantify as pain. As for the stinging, I didn’t really notice that either. But okay, that was just the numbing part. The long, hollow needle that would penetrate my spine would surely be felt.

After barely a minute, she checked to see if the area was numb by gently poking it with a small pin. I didn’t feel anything. We were ready to go. She told me to hold as still as possible and I held my breath, not daring to breath for fear I would move. I grasped Nick’s hands even tighter. Not a moment later, she told me the needle was in and that she was withdrawing the spinal fluid. And a moment after that, she said we were done.

She was kidding, that was it?? I didn’t feel anything! Not a poke or even any pressure. Nothing. I was starting to feel extremely sheepish. Also, I wanted to punch the people who told me their spinal tap was the most painful experience of their lives. Maybe it was. And maybe I just had the best damn doctor ever. Out of both embarrassment and extreme relief, I actually started to laugh. Dr. M. just smiled and with a wave of her hand said happily “See, I told ya!”

Dr. M and I briefly discussed the paralysis that had cropped up on the right side of my face, which she didn’t seem terribly surprised to see. She sympathized and gave me a look that clearly said “oh great, like you needed one more thing!” She told me not to stress, and that the only thing she was really concerned with was my right eye drying out. She gave me some eye ointment to use throughout the day and, with an affectionate pat on the shoulder, said that we’d follow up in a week to see how I was doing and review the results of the spinal tap.

Another hurdle now behind me, another fear conquered. I knew there was still more to come and that there were plenty of obstacles still ahead of me. But for now, I just breathed a sigh of relief and committed myself to movies in bed with Nick for the rest of the day.

Also, I was pretty confident I had earned an ice cream cone.

The Business End

Okay, people…let’s talk business.

And when I say business I mean, you know, “business”.

“Making a pit stop”.

“Answering nature’s call”.

“Filing some paperwork”.

Whatever you call it, the basic procedures for going to the bathroom is not something into which we typically pour much thought and effort. At least, not since we were old enough to take a certain pride in the activity. For those of us with MS, however, using the potty isn’t always cut-and-dry.

Because multiple sclerosis interrupts or slows the transmission of signals to and from the brain, the electrical impulses to the muscles that are involved in emptying your bowel and bladder can become disrupted, resulting in anything from mild constipation or urine leakage to losing control of the bladder and/or bowel altogether. This spells inconvenience, frustration, the swallowing of a fair bit of pride and a whole heap of embarrassment. In the four years since my diagnosis I’ve felt very fortunate to have avoided these awkward symptoms. That is, until now.

Over the past several months, I’ve noticed an increasing frequency in my need to visit the ladies room. I thought little of it at first, but as time has progressed I’ve found myself running to the potty what seems like every 5 seconds. I just have to ‘go’ all the time. This has caused some daily frustrations and inconveniences both at work and in my leisure activities (thanks for ruining the middle of Inception, bladder…you jerk.), not to mention a considerable loss of sleep due to all the nightly bathroom trips.

Now here’s the kicker…when I actually take my seat upon the throne, not much is happening. Kind of like a Joss Whedon series. He builds us up to this big crescendo…..and then the series gets canceled. My bladder is doing the same damn thing. This could mean two things. Either I really need to empty my bladder but am unable to do so, or I just feel like I need to when I really don’t.

Fun, huh?

Finally, I decided that I was done with the constant pee parade and so I had a frank little chat with my neurologist. She ordered a bladder scan, which is a test that measures urine output (in addition to the speed and consistency of the flow) and then determines how much urine, if any, remains in the bladder. Basically, I got to pee into a computer. Is it weird that I enjoyed that a little? It’s not often us ladies get the chance to aim at something. Just sayin’.

Anyway, the test did show a bit of hesitancy in getting started as well as some “stop and go” which my neurologist felt was most likely due to random bladder spasms and she referred me to a urologist for further consultation.

I just can’t describe the pleasure of discussing my bathroom visits in detail with so many strangers….my neuro, her nurse, her PA, the urologist and his PA….the fun never stops! I realize these folks are all professionals, but I was growing a bit weary of the constant 20 questions game about my wee. Not to mention having to divulge all the details about this to my husband. Yet more pride swallowed.

Bladder dysfunction is one of the most common symptoms of MS (it is estimated that 80% of people with MS will experience bladder issues at some point) and yet it is one of the symptoms that people with MS are least likely to talk about. I mean, let’s face it…..it’s one thing to say, “Boy, my feet are really tingling today” but most of us are less likely to dive into dialogue about our urinary issues. This can be very embarrassing for some folks and can often add to feelings of isolation. MS is a bitch, ya’ll. It finds ever more ways to shove our pride right down our gullets.

But I digress.

The urologist agreed that I was most likely experiencing MS related bladder spasms and prescribed a medication called Ditropan. Ditropan acts to relax the bladder, allowing it to hold more urine and relieve the constant sensation to “go”.

“Relax the bladder”. I like that phrase. My bladder is plum tired and it could sure use some “me” time. Yeah, that’s Ditropan….a cozy hammock and warm sunbeam in which your bladder can put its feet up and relax. Ahhhhhhh!

What I really appreciate about Ditropan is that I can take it as needed. Perfect. I don’t care to take any more medication than is absolutely necessary and I appreciate the freedom to decide how much is appropriate for me. For now, I am just taking this medication at night since that seems to be the time my bladder issues are most bothersome. And I am happy to report that it is helping.



And here they are, my magic blue pills. Aren’t they majestic? Inscribed with…..is that a ‘V’? Hmm. Kind of reminds me of some other special little blue pills.

Of course, their magic comes at a price, as do all medications; they make me feel fairly dizzy and nauseated from time to time. For now, however, I am willing to make the trade. And that’s what treatment is all about, compromising for the greater good.

I'm A Nice-Ass Person With MS

I don't know who this girl is, but I love her.

No really, I L.O.V.E. her.



Thank you, sister. Thank you for unapologeticly being yourself and for putting yourself out there to raise awareness. And thank you for the most awesome explanation of MS I have ever heard!

And yeah, the National MS Society IS a nice-ass society.