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.

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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! 

Latest neurology appointment 

It can be summed up in one word: uneventful. 

Debbie is so nice and friendly and admired the baby, and of course occasionally it’s nice to get out of the house and off the new-mom hamster wheel. 

But I can’t help but feel that these biannual visits are a waste of everyone’s time. If nothing changed then there’s nothing to report, from either side, so what am I doing there? We’re not friends, so it’s not a social visit. There’s nothing they’d see in an incredibly limited neurological exam that I wouldn’t already know about myself, so it’s not as if they’d be able to tell me something new. I basically show up, hand over my $10 copay, answer a few questions and chit-chat for 15 minutes, and I’m on my way for another 6 months. 

Oh, and WHY am I still going every six months, you (and I) ask? Gee, I wish I knew. 4 1/2 years ago, when I first became a patient at that office, Dr. Rosenberg said that if everything continued to go so well, I could probably come just once per year. Well, I’ve done well—very well—one relapse in 5 years, complete functionality, a <1 on the EDSS—and yet I’m still asked to come every 6-7 months. 

Debbie said maybe an MRI in December, before my next appointment; I advised about the breastfeeding issue so gadolinium contrast won’t be an option. She did say she fully supports breastfeeding for a year; we’ll see what Dr. Rosenberg himself says in December….Kira will be 10 months old by then so his opinion will be interesting. 

Overall no news is always good news. 

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.