Neurologist 12/7/16

Bright spot of the visit: everyone in the office went nuts over Kira, 9 1/2 months old and a big beautiful personality. ❤️

By purely physical-examination standards, I’m still doing well. All the basic neurological tests were fine, as they always are. He did ask me to get another MRI, with contrast, which I intially balked at because of the aforementioned breastfeeding reason, but after explaining that Kira would most certainly not agree to drink 24 hours’ worth of her breastmilk feedings from a bottle, he said that just dumping 1 or 2 feedings afterward would be sufficient. THAT she can do. So, an MRI is on the horizon, likely for early January to fit in with our plans to conceive Baby Glotzbach #2.

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A shared philosophy

In some ways this post will be a departure from the norm in that a large part of what I’m going to talk about has to do with pregnancy and childbirth rather than MS—but never fear, MSers, it’s relevant to you too.

When I first started thinking about what I wanted having children to look like, a million maybe 15 or so years ago, I knew that most of what I wanted fell outside of the mainstream. These things included:

  • as much of a “hands off” and non-“managed” pregnancy as possible, including infrequent (if any) ultrasounds, infrequent (if any) vaginal exams, limited prenatal testing and limited interference from my healthcare provider—who would preferably be a midwife, not an OB
  • not being in a hospital or being delivered by an obstetrician, who is a medical doctor and by definition thereby “medicalizes” the process
  • no unnecessary interventions or procedures, including an epidural or any other anesthesia, induction or augmentation of labor, electronic fetal monitoring, frequent checks of my cervix, restriction of movement during labor and/or demanding a certain position in which to give birth, and certainly no unnecessary episiotomy or C-section
  • limited interference with both baby and I after the birth, including leaving the baby with me after the birth and not taking him/her away to perform necessary examination (which can be done right next to me); no immediate bathing of the baby; leaving us mostly alone to skin-to-skin bond and breastfeed unless I ask for help

The more I researched and read and learned over the years, the more important these things became to me. Of course I know that fluid and flexible processes such as pregnancy and childbirth can’t necessarily be predicted and thus my wants were not guaranteed. That’s one area where MS is related—I’m living with one of the most unpredictable medical conditions in existence where nothing is guaranteed. But the above was so important to me that I was going to do everything under my control to make sure it happened. And it did happen—all of it! and it was wonderful!—but recently I got to thinking about my husband’s role in all this and how helpful it was that not only did my care provider and I see eye-to-eye—after all, that was on purpose; she wouldn’t have been my care provider had that not been the case—but that also did my husband and I.

What on earth, I wondered, must a woman’s experience having a baby be like if she and her child’s father aren’t on the same page? My husband and I were perhaps unique in that we talked about our future family plans VERY early in our relationship (we had baby names picked out within 6 months of dating) but I doubt this is the case for every or even most couple(s). I was also fortunate that my husband, although he possessed less knowledge about the process, seemed to fully share my common-sense, organic views on pregnancy, birth, and child-rearing in general. I can’t imagine having gone through the process with someone on the fence about—or worse, openly hostile or resistant to—my views.

He was such a help and support to me, especially throughout the marathon of labor, that having that been otherwise is unthinkable. Although I was very confident in myself and very sure of my choices, thereby not needing his or anyone’s validation, I would assume that it would have been a lot harder and less enjoyable had there been contention between us in how we wanted and expected things to go. I’m sure there are pregnant women out there who, for example, want the holistic, natural, homebirth or birth center experience with midwives while their partners are dead set on the perceived greater safety and support of a hospital and a doctor. And although in that it’s the woman having the baby and thus likely the final decision-maker of what route she will take, certainly opposition from her partner wouldn’t be helpful and probably would be harmful, if only emotionally.

As far as relates to my MS, my husband is similar to me in how he views that, too—as a minor inconvenience, not a major disaster, and not at all a source of stress or a cause of aggravation. He supported me when I took the Rebif injection, and supports me being off it until we’re finished having children. He sympathized when I had a relapse but looked at it as optimistically as I did, seeing it as a minor bump in the road rather than a tire-popping pothole. It’s a blessing to have a partner with a shared philosophy as pertains to health, medical, and body issues.

Pick your poison

I posted before about the tremendous, crushing, out-of-this-world fatigue I experienced in the summer of 2011, shortly after my diagnosis. On a scale of 0-10, 0 being “no fatigue” and 10 being “dead,” I would have rated myself an 8 or a 9. No joke. There were days, after the brutality that is a 10- or 11-hour day as a UPS driver in the Central Florida summer heat, that I wondered how I was even still alive. 

Then I became pregnant in May of 2015. This meant a first trimester—which is notorious for its fatigue, and for good reason—in, you guessed it, the Central Florida summer heat. Still delivering for UPS. It was very familiar to 4 years past, and very difficult.

My third trimester fell in the winter months of December, January, and February so I didn’t have the heat to contend with, but as the third trimester is almost as tiring as the first, I still had the fatigue. (And yes, I was still working.) 

I’ve never been good at the “which is worse?” game, but if I had to decide I’d say that the MS fatigue and the first trimester of my pregnancy were about equal. Equally exhausting! 

Depression and MS

Depression has been my constant companion for almost as long as I can remember, certainly since age 14-15. As a child, I was awkward physically and socially; I was a very short, skinny little thing who my classmates just loved to pick on. Making friends was hard and I grew bitter at an age no child should never be bitter. This carried over into the teen years; even after I’d attained normal height for my age I retained the social awkwardness that I’d developed pre-adolescence out of self-protection. This never fully went away. As a young adult I made many mistakes in dating, relationships, and friendships and to this day it’s very difficult to let others in and be emotionally and socially vulnerable. 

Add to those childhood struggles some family difficulties growing up and a possibly inherited bent towards mental illness from my father and I believe it all came together to form my struggle with depression amongst other issues such as fear of abandonment and attachment issues that aren’t relevant to this blog. 

When I was diagnosed with MS, one of the first things I learned was how common depression was in MS sufferers. Well isn’t that great, I thought. As if I need more of that. I learned that depression in MS is not simply situational as a reaction to the diagnosis and possible limitations resulting from the condition, but also due to actual physical changes in the brain. 

I’ve been able to manage thus far without medication as not only do I not want to be medicated but I also personally believe antidepressants simply mask the issue rather than dealing with it. Until I gave birth I’d been seeing a therapist fairly regularly but it’s quite difficult to deal with a lifetime of issues in 50-minute increments. Plus the medical issue is its own animal that can’t be dealt with through talk therapy. So I take it day by day. Some days are easier than others; some are really hard. Being chronically depressed has such a strange dichotomy—life can be beautiful, my marriage can be going very well, my baby daughter brings more and more joy every day…and yet a cloud hangs over it all, for no readily apparent reason.

It frustrates my husband—he’s empathetic to a point but he doesn’t really understand it. As I don’t believe anyone without a mental illness ever really can. He’s very buck-up-and-keep-on; wallowing in feelings has never been his style. And oh, if I had a nickel for every time I wished I could be that way, I’d be a wealthy woman. But I can only be who I am and do the best I know how. 

Sometimes I worry about the future with MS and depression in that if it’s a struggle now, with full physical function and no limitations of any kind, how much worse will it get if that should change? One of many bridges I can only cross when I get there.

Just say no (to contrast dye) (just this once)

I last saw my neurologist in December of 2015. I was 7 months pregnant and they said that they would like me to have an MRI in March, after I gave birth, just to see how things were going since a relapse is more common in the weeks following childbirth. Since I’m almost always very agreeable with any request a healthcare provider makes of me, I said sure no problem. We’ll call you to set it up, they said. 

March came and went without a call. As did April, and May, and now most of June. My next appointment is on July 12th and the subject of the MRI will likely come up again. 

During December’s discussion, they said that since I was planning on breastfeeding my baby, I would need to “pump and dump” my breastmilk for 24 hours following the MRI due to the contrast dye I’d be injected with. “No problem,” I said. Naïve, pregnant me assumed I’d be able to pump 24 hours’ worth of feedings well in advance and just feed baby-to-be from the bottle until I was in the clear. Baby-to-be would happily drink my lovingly-pumped milk, I’d have my MRI, and life would be roses. 

Ha. Ha-ha-ha-ha. That is the sound of my maniacal laughter at the whimsical notion of Baby-to-be disappearing and the reality of Baby-that-is taking its place. Baby-that-is is a lovely 4-month-old girl named Kira who laughs in the face of a bottle. And sometimes cries. And absolutely refuses to drink from one. Well, I take that back—she’ll occasionally sip from one, maybe even drink an ounce here and there. But 24 hours’ worth? An entire day??

Ha. 

So I’ll politely explain the situation and say “no” to an MRI with contrast until she’s weaned. Sorry-not-sorry.

I’m sure they’ll be thrilled. 

Sex and MS

I’ve sat on this post literally for years due to the sensitive and personal subject matter. It appears that relatively little has been discussed regarding this issue, and for good reason—I (thankfully) don’t know of too many people who want to openly discuss their sexual life. Nonetheless, this topic has become more and more of a pressing issue for me as time has gone on, and in the spirit of openness and honesty with regard to living with multiple sclerosis, I feel it’s important to discuss.

It’s common knowledge that sexual dysfunction is a common symptom of MS. For me, it became an issue almost immediately following my first exacerbation. I was in a monogamous dating relationship at the time of my diagnosis. Within months of recovery from the exacerbation, I noticed things felt different during sex. At first the change was solely physical. It suddenly took a VERY long time to achieve orgasm—so long that I became frustrated and more often than not gave up trying. Vaginal dryness also became more of an issue than it had ever been. Everything in the genital area seemed over-sensitive, and not necessarily in a good way; more like in an “overstimulation” way. Sex was quickly becoming unenjoyable.

As time went on, equaling and then surpassing the physical issues was (and has been ever since) my lack of libido. I believe the reason for that to be twofold: partially (minimally) due to the physical difficulty—when sex ceased to be physically enjoyable and seem like “work”, naturally it follows that I’d want to bother with it less. Much more so, the lack of libido is neurological. I don’t claim to know the exact mechanism by which this happens, but it does and it happens to a LOT of us—as neural pathways are disrupted by demyelination, anything can be affected, including how the brain signals one to desire sex. In my case, it began to signal me to desire it almost never-not-ever.

In 2012 my ex-husband and I reconnected and began a new relationship. I made him aware of all of my experiences thus far with MS, including my limited sexual desire. Of course I did my best to assure him that “it’s not you, it’s me”—that famous line—and that it had absolutely nothing to do with how attractive I found him or how much I loved him. We have had many a sexual drought in our young (re)relationship, and each time I am simultaneously grateful that he’s so understanding and pensively mindful of the fact that our relationship isn’t exactly “normal” (whatever THAT is). Because, I don’t force myself to have sex. We have had discussions about that very issue—how occasionally I would do that, in an attempt to be a “good wife”, to not “deprive” him, to make sure he doesn’t feel “rejected”—all of those “should”s and “should not”s that go along with sex in a 21st century relationship—and he made sure to tell me that he was not interested in “duty sex” and to NOT at all have sex if I wasn’t in the mood. When I countered that my “in the mood” is actually almost NEVER, his response was basically, “so be it.”

This is VERY difficult. In this area, I often feel like a failure as a woman and a wife. It was hard enough to feel like my sexuality was basically taken away without my consent. But then to know that, despite his calm attitude about it, my husband has to be affected through no fault or doing of his own, adds insult to injury. It’s not fair to either of us, but I hate having this burden put upon him, whether or not he sees it as such.

When I spoke to my neurologist about it, probably a couple of years ago now at least, he advised that there were medications he could prescribe to give my libido a boost. I’m not taking a pill to have sex, I thought—and probably said, knowing me. I still feel that way. Something about that just seems ridiculous, unnecessary, and even wrong. I can’t put my finger exactly on why, but I think it has to do with my notion that if something as intimate and personal as sex can’t be done “naturally,” then it doesn’t need to be done. I’m not one who believes sex is a “need”, physical or otherwise, although I know that attitude is probably product of a chicken-or-egg argument; do I not care about sex because I feel that way, or do I feel that way because I don’t care about sex?

There’s no doubt that our emotional intimacy has suffered right along with our physical intimacy. I’m very fortunate in that my husband and I are very good friends—but on my bad days when I think about it, in many ways that’s ALL we are. I very rarely feel like we’re lovers. On the worst days, I feel like we’re just good buddies and roommates. I don’t WANT to feel this way. We were only married two and a half years the first time before we divorced and we’ve not even been married two years yet this second time. God willing, we have another 30-40 years together, and I would rather not spend it without any passion or even a few embers. I absolutely would rather not spend it without romantic love that I do believe is built and sustained with physical intimacy.

We have a four-month-old—obviously we’ve had sex in the past year, and not just the time we conceived her either. We have, though, been celibate since probably a month or two before she was born. And while I vaguely consider resuming our sex life from time to time (a commitment to natural family planning makes that tricky considering I haven’t resumed my menstrual cycle), it’s been a passing thought—“oh, yeah, we should probably have sex” (there’s that “should” again!)—rather than an actual desire to put into action.

If you or someone you love has been affected by MS and sexual dysfunction, what are your experiences? What have you done to work around the problem? DO you consider it a “problem”? How have you maintained your intimate relationship with your partner?