Stay out of my spinal column 

I am unusual among persons diagnosed with MS in that I have never been subjected to a lumbar puncture for the purpose of diagnosis or any other reason. I was diagnosed via an MRI in 2011 that showed such a large spinal lesion and two smaller brain lesions that it was unmistakable. 

I hate the idea of a needle going anywhere near my spinal column so much that it was in part why I wanted nothing to do with an epidural during childbirth. There is no way I would want a lumbar puncture; the very idea makes me queasy. No, you certainly will not insert a huge hollow needle into my back and withdraw cerebrospinal fluid, thanks very much. Just no. 

Thank goodness for modern diagnostic practices based on imaging and observation of symptoms alone. A needle in my spinal column. WITHDRAWAL OF FLUID. Are you kidding me??


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??


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?

Sorry, doc…for me, breast is best

I’d always wanted children, and being diagnosed with MS didn’t change that. I’d also always wanted to breastfeed. It was important to me for several reasons: the health benefits to my baby, the convenience factor—no mixing bottles, etc.—the benefits to me as a nursing mom (faster postpartum weight loss, delayed hormone crash, possibly delayed return of menstruation and fertility) and the bonding time for both of us.

When I discussed my family plans with my neurologist, he assured me that of course having children would be no problem, and I could go ahead and go back on Rebif afterward. When I mentioned that I planned to breastfeed, he suggested that that would be perfectly appropriate, and—from what I remember him saying—around 3 months or so. (I am not directly quoting but that was the gist of what I remember being said.)

Um….no….I don’t think I’ll be doing that. That doesn’t work for me.

Rebif worked fabulously for me while I took it. For four years, I experienced zero relapses. The first came only after I had stopped Rebif for six months. I have no problem returning to it someday, as I know it worked and the benefits outweigh the annoyance of thrice-weekly shots (as discussed in an earlier post). But right now, for me, nursing my daughter is more important than jumping right back into an MS treatment regimen. I’m planning to breastfeed exclusively for the first six months of her life, and would like to continue after the addition of solid food until she’s a year old.

I guess it’s a calculated risk. From prior experience, obviously the chance of another relapse is higher if I stay off the injection. However, breastfeeding and the hormone levels that go along with it continue to offer some protection. And since I’d like to have even more children, if I were to get pregnant again after weaning—which would mean even longer off Rebif—that same hypothetical pregnancy would offer further protection still.

Kira needs her mom; a mom who is not disabled would be preferred. But I’ll be 35 in August of this year, and my fertility window sadly won’t be open forever. And Kira herself will only be this little just this once…let me feed her, doctor. Let me enjoy this closeness as in just these short months of her total dependence only I can feed her. The breast is the best for us.

A Labor Story

My due date of February 18th came and went. This was no surprise as I knew that a “due date” is nothing but a general guideline. I was told to have an ultrasound before my next appointment, which would have been at week 41, just to ensure that all was normal, Baby Glotzbach (gender unknown) was still doing well, amniotic fluid levels still good, etc. As I hadn’t seen my baby since the 20th week, I was happy to comply. I scheduled it for the following Wednesday, the 24th.

On Monday the 22nd, very late at night, I started to shed my mucus plug. I’d had Braxton Hicks contractions the last 12 weeks of the pregnancy but the contractions had become more like real labor ones as of late, so the beginnings of the loss of the plug didn’t surprise me. Finally, we’re getting things going, I thought.

Late Monday night/early Tuesday morning of that week was also when the early labor contractions got strong enough that I had trouble sleeping. I took the first of many middle-of-the-night showers then; the hot water helped soothe the discomfort.

My contractions were less strong during the day Tuesday; I was able to nap a little and take my usual walk around the neighborhood that afternoon. I also hoped that walking would move the process along with the combination of exercise and gravity. Tuesday night was a repeat of Monday night: increasingly intense contractions and more hot showers.

Wednesday morning I was fatigued and uncomfortable to the point that my husband called both the radiologist’s office to cancel the ultrasound and the birth center to advise that I was in labor. They told him to have me call back after noon if there was much change. By that point, as had happened the previous afternoon, I was more comfortable so I didn’t call.

Wednesday night was the worst yet; no sleep for either me or hubby and 4 (or maybe 5) hot showers where I had to lean against the shower wall and breathe deeply through contractions which ranged from 5-10 minutes apart. I was counting the hours until 11 a.m. Thursday and my next appointment at the birth center, where I’d already determined I wouldn’t be leaving without having had the baby!

Thursday morning: going on day 3 of little to no sleep and facing an hourlong drive to the birth center, I was crabby and exhausted already and little did I know how much more of a marathon awaited me! My midwife was waiting for me, already in her scrubs, and the first thing I said was, “Hi! I’m not leaving!” When she checked me she said I was 7 centimeters dilated and the amniotic sac was bulging—nope, not leaving! I could tell I’d made progress over the week, but I was surprised (and excited!) that I had made that much.

We unloaded the car of all our luggage—I don’t use that term lightly; we had the bag for the baby, the bag for me, the bag for my husband, my (large) purse, and a cooler of food and drinks; we looked as though we were moving in—and went to get lunch up the street and take a walk by the lake. In the restaurant, of course being hugely pregnant, patrons asked the usual question: when are you due? I replied “A week ago, and I’m actually in labor right now!” I got a kick out of people’s reactions.

Once we returned to the birth center, I spent the next several hours in the jetted tub. It felt so good, almost good enough to not be bothered by the increasing contractions. They were intense and painful but I didn’t doubt I could deal, especially since I (mistakenly) assumed that since I had been at 7 cm at 11 o’clock, things would progress quickly. Oh, the things us naïve first-time moms tell ourselves. I really thought—and this was bolstered by my midwife’s opinion—that I’d have a baby by that evening.

After a few hours in the tub, I got out and walked around the room some, trying to get more comfortable. I tried leaning against the bed; I tried kneeling on the bed; I tried lying down ON the bed—that was pretty bad, because I was so tired that all I wanted to do was lie down, but the contractions were the most painful in that position. My water still hadn’t broken and my midwife asked if I wanted her to do it, but I said absolutely not—I was still insistent on NO intervention at all. And, ok, I was afraid it would hurt—a rather silly fear, given that I was in the middle of a natural drug-free childbirth, but I’ve been known to be irrational on occasion and sleep deprivation didn’t help matters.

By 4 a.m. Friday morning, I had not had the baby and I’d started to feel like pushing, which I attempted to do in a somewhat all-fours position on the bed. My midwife checked me, found I was 9+ centimeters….and while she was up there, ha-ha, casually went ahead and broke the sac. You guys….the amount of amniotic fluid that POURED out of me was UNREAL. It gushed and gushed like a faucet! I totally screamed out loud, out of sheer surprise—of course, obviously, I’d never felt anything like that sensation in my life. I went into the bathroom and looked in the mirror; my bump had literally deflated like a balloon.

Once the water had broken, did the real contractions ever start! The intensity ramped up instantly. For the next several hours I continued to dilate—the cervix had receded a bit because the amniotic sac had been holding it open—and tried to rest between contractions if I could, which didn’t amount to much rest at all. By this point I’d basically been awake, save for cat naps earlier in the week, for 96 hours straight. I was more dead tired than I’d ever been, and for an MSer with incomparable fatigue at various times, that was saying something.

Finally at around 7 a.m. Friday I began to push in earnest. Despite emptying my bladder at regular intervals, it continued to empty itself, vigorously, onto the bed as I pushed—if I wasn’t so tired I would have been horrified—I was a little horrified anyway, and was just thankful it wasn’t poop. (I did end up being part of the like 5-10% of laboring women who did manage NOT to poop at all during delivery, thank the Lord, Mary and Joseph.) As baby was not making his or her appearance in the position I was attempting, on all fours on the bed, my midwife suggested we try something else. She suggested I sit on the toilet, which I tried for precisely ONE contraction, then said no more—it was very painful and I didn’t have any leverage, anywhere to put my hands to brace my arms—it was a no go. So she suggested the birthing stool, which I agreed to; gravity would help but I’d have a way to brace my arms as I pushed.

And, the stool was the ticket—at 9:18 a.m., on Friday, February 26th, a GIRL was born—Kira Elizabeth, 7 pounds, 4 ounces of perfection. She flew out of me with the final push after her head came out, born with eyes wide open, and cried right away. She was nothing but smooth and wet and slippery; no vernix, no wrinkly skin (which amazed me given the amount of water she’d been swimming in!). After 3 days of early labor and 22 hours of active labor, she was finally, finally here. (And did I mention perfect?!?)

Save for the time it took (I never expected such a long labor, given how active and in shape I was), the whole process was exactly what I’d always wanted: a completely normal, uncomplicated pregnancy; a relatively calm birth without intervention, management, or manipulation by other people; and a gorgeous, healthy daughter (by far the best part of all, since I had badly wanted a girl). It was the experience I’d always dreamed it would be, well before multiple sclerosis was ever a factor in my life. I’m so grateful that having MS didn’t impede my ability to experience this, and so glad that having kept up my physical and mental strength since my diagnosis enabled me to endure and persevere!
Thanks to my loves at Heart 2 Heart Birth Center in Sanford, Florida, and especially special thanks to my midwife Karen Bove—without whom this could not have been possible. ❤️