Mendolonium

What do you read about when you get to choose?

A lifetime ago I used to read about astronomy and space exploration.  Not too long after I was married,  I began to dream of having children and I started to read about parenting.  Then I found these newfangled “web logs” and was riveted by the tales of pregnancy, childbirth, and babyhood that I found there.  And somewhere along the way my fascination with all things baby morphed into an actual academic interest in pregnancy, childbirth, and breastfeeding.  Now I have whole google news feeds devoted to the topics of childbirth and breastfeeding.  Our dinnertime conversation regularly includes my relating the results of a recent study such as this paper showing an inverse relationship between breastfeeding duration and the onset of rheumatoid arthritis.  Jeff is now well used to my indignant monologues regarding non-evidence based practices in childbirth or discrimination against breastfeeding mothers.

I thought that perhaps my passion for understanding and advocating for healthy pregnancy, childbirth, breastfeeding, and infant development might abate as I moved on from the baby producing stage of my own life.  In fact, one of the reasons I have been sad about this phase of my life coming to a close is that I no longer have an obvious reason to care about pregnancy, childbirth, breastfeeding, and infants.  Instead, I have found that I care even more.  I have seen how the impact of these events on my own life and the life of my children.  I have seen friends, fellow mothers, who are deeply, and long-lastingly affected by their own experiences in pregnancy, birth, and early parenting.  Now having a daughter I look at her and think how much I want her future experience of being a woman to be a positive one, as mine has been.  I have realized that my interests are not a passing phase but a fundamental shift in my life’s direction.  To that end, I recently began volunteering on the steering committee for the  Breastfeeding Task Force of Greater Los Angeles (Breastfeed LA); an organization devoted to “improving the health and well being of infants and families through education, outreach, and advocacy to promote and support breastfeeding”.  While at a Breastfeed LA event I chatted with the director of the organization, an accomplished nurse and lactation consultant, herself a mother, whose children are now grown.  I realized speaking to her how much I admired her life.  Her children might have been grown but she had not left the world of pregnancy, breastfeeding, and infants behind.

Those of you who have been reading this blog for some time might have already noticed a shift in topics.  I will still talk about cooking, and food security, but despite how much I care about building a more sustainable future such topics were usually not the first ones I choose to read about (although they are high on my reading lists).  And, of course, I enjoy talking about my family – they are my heart and soul – but they do not quench my academic thirst for knowledge, debate, and avocacy.  So expect more discussion of breasts and babies.  I am looking forward to seeing where this passion takes me.

I have a recurring nightmare…

I am having a normal day, playing with my children, talking with my husband, sitting at my table eating dinner; when without warning my body gives out on me.  I feel my hands begin to tingle.  Then my arms and legs go numb.  I stop speaking in mid-sentence and, for a moment, feel merely bewildered, rather than frightened.  I feel my body ooze to the floor as if I had suddenly begun to transform from a solid to a liquid.  I am not injured by the slow-motion fall.  I lie on the floor paralyzed, completely unable to move.   I cannot even open my lips in a silent scream.  I can scream only in my mind and I feel fear begin to build.  I mentally call out for help; focusing all my effort on somehow telepathically communicating my distress.  Sometimes I am alone in my dream.  At other times I am not and I watch as my husband or my family hover over me, concerned, but seemingly at a loss as to what to do.  They debate whether or not I should be taken to the emergency room and I mentally bellow, “YES!” but no one hears me, no one understands the horror of my situation.  Occasionally I am able to move a hand in my dream and I recall the sign language we are teaching to our children and sign “telephone” and then hold up five, four, one, and one finger in a row trying to entreat those around me to “call 911″, but no ambulance is ever summoned.  At this point in the dream I descend into utter terror, wondering if I will ever move again or if I will spend the rest of my days hovering alive, but still, on the cold, dusty wood floor.  It is usually at this point that I jerk awake, released from the paralysis of sleep, and lie in the dark.  I get up and use the bathroom whether I really need to or not – just to feel my legs moving underneath me confirming that the nightmare is just that.  I used to dream of monsters as a girl, specifically a man made out of yellow insulation that lived in the closet which housed our furnace.  He was terrifying, and yet, I could walk by that closet because I knew logically that he wasn’t real.  I am not nearly as certain that my current nightmare is entirely impossible.

I’ve known for a long time that something was “wrong” with me.  I had inexplicable pain that would come and go; at times crushing fatigue, and most memorably broke out in painful bumps on my hands two days before my wedding.  The symptoms never painted a complete picture, however.  It was only in 2004 that an answer started to emerge.  I was making an apple pie – rolling out the crust between two pieces of parchment paper and I gasped in pain.  The force of pushing down on the rolling pin had created a pain so sharp in my wrist that I dropped the rolling pin as if it was hot.  I examined my wrist closely looking for signs for bruising.  I mused as to how I could have broken my wrist without having known it – the pain was so severe.  My wrist looked perfectly healthy, but I was unable to finish rolling out the dough.  I consulted my primary care physician, I went to urgent care one night when the pain was excruciating.  I was diagnosed with carpal tunnel syndrome, tendinitis, and stress.  I knew that none of those were the answer.  It was my eye doctor who made the connection – she noticed my wrist in a splint and added in my complaints of dry eyes.  She asked me about fatigue, transient fevers, and other joint pain to which I replied yes.  She sat back and pronounced quietly, “You have rheumatoid arthritis”.  She then clarified that she couldn’t be sure; that I should consult a rheumatologist.  There were blood tests, bone density scans, X-rays, and MRIs, and finally after three years a definitive diagnosis of rheumatoid arthritis or RA for short.

RA is an auto-immune disease, meaning in simplistic terms, that a portion of the body’s immune system attacks healthy tissue somewhere in the body.  In the case of RA, the immune system primarily targets the synovium, the lining of the joints.  RA is a systemic disease, however, and is not limited to the joints. Typical symptoms include:  fatigue, stiffness, flu-like symptoms, low-grade fever, rheumatoid nodules (lumps of tissue under the skin), muscle pain, involvement of the glands around the eyes and mouth (causing decreased production of tears and saliva), anemia, and abnormally cold extremities.  In women some of the same antibodies present in those with RA can lead to miscarriage.  The drugs used to treat RA have common side effects of weight-gain, depression, loss of bone density, and increased infection.  Less common side effects include life-threatening infections and lymphoma.  Many of the drugs are not safe for pregnant or nursing women.  RA is a chronic disease, meaning there is no cure.  Without treatment RA leads to severe joint problems resulting in the loss of mobility and often organ involvement leading to an early death.  With treatment some of those with RA will lead an essentially normal life, others will not respond to treatment at all, while most will fall somewhere in-between.  I am one of those in-between.

I rarely ever even try to explain what it is like living with RA.  How walking can be so painful one day that I have to use a handicapped placard so that I can park as close as possible to my building and then go for a workout and can applesauce the next.  I know it doesn’t make sense to those around me.  I doesn’t make sense to me either.  Most people have no idea that I am sick at all.  They might notice me in a wrist brace from time to time, might notice that I seem to have a rather large number of doctor’s appointments for a thirty-two year old, and might notice that I seem to pop Tylenol and ibuprofen like breath mints.  If they know about the RA they comment on how good I look for someone who is “sick”, squinting at my high heels skeptically.  The thing is; unless you live with me, you’ll probably never see me looking “bad” – on my worst days I just don’t leave the house.  No one realizes that when the pain is bad it doesn’t matter whether I wear my two inch red patent leather heels or slippers; it hurts just the same so I figure I might as well look good.   I don’t wear a badge on my chest that says, “I took 17 pills today, how about you?” Living with a chronic disease is a strange thing.  I honestly don’t remember what it was like to feel “normal”.  A new normal is formed and oddly enough I can often even find myself thinking “I’m not really that sick” because they way I feel seems so typical at this point.

I had the nightmare several times in the past few weeks.  It is interesting to me that I should have it now.  I am on the lowest dose of prednisone I have been on in four years.  I am am able to exercise fairly regularly.  And more often than not, that handicapped placard stays tucked away in the center console of my car.  My RA is not “that bad”.  Then I woke up on Sunday around 9:00 am and was back asleep at 11:15.  I simply couldn’t stay awake.  Yesterday I was so dizzy I had trouble standing.  Today my right knee isn’t a joint; but an epicenter of pain.  How long will these renewed symptoms last? I have no idea.  They might disappear tomorrow or this might be the beginning of the next six months.  And to me that is the hardest part of living with a chronic disease.  I can handle the pain, but I still don’t know how to deal with the uncertainly.  What does RA mean for the rest of my life? Will I slowly morph from a young, capable, woman, into a shell and how can others help me if I do?  That is my nightmare.  Sometimes I just wish I dreamed of big hairy monsters.

Do you have any dreams that are too close for comfort?

When I asked for topics to blog about Hannah suggested “mustering the will to expend great energy on projects”.  Just this week I looked around our backyard and I saw peas to trellis, invading morning glory to fight off, and bare patches that needed re-seeding and I though “Eh, I’m cold and promptly went inside and ate a brownie sundae.”  Yesterday I had a flat of late season strawberries sitting on my kitchen counter and after I got both kids down for a simulnap* I thought about crushing them and starting the jam making process but instead grabbed a down comforter and curled up on my sunny couch to take a nap. And you may recall that I made some grand proclamation about blogging every day during the month of December but it’s looking like every other day.

But for me, all of the above:  coming into the house and taking a break when I got cold, trying to take a nap, and going to bed rather than blogging,  are success rather than failures.  You see, I actually have the opposite problem that Hannah alluded to; I have an overabundance of will and expend far too much energy on projects with the inevitable result that I end up painfully achy and a tired that borders on utter exhaustion.  It sounds like a “good” problem to have, but it’s truly a struggle for me not to overdo life.  Until a couple of years ago I didn’t recognize it as a problem, but the demands of children and a progressive disease (rheumatoid arthritis) have made it impossible to ignore.  Now I am searching for the right balance in life between treating my body kindly in a physical sense and satisfying my, at times obsessive, need to be productive.  It’s often more a battle than a search.  Many people find TV, meditation, a hot bath relaxing but none of those traditional stress relievers work on me.  I find producing something to be one of the ultimate forms of relaxation.  I discovered in college that baking from scratch really soothed me and so to this day I will find my inner peace by baking bread, a cake, or cookies.  I also find being in the garden intensely soothing.  Further compounding the problem is that while I love to sleep and would probably function best with around nine hours a night I am naturally a night owl and find it impossible to go sleep before 11:00 pm.  Adding fuel to the fire is that I seem to have spawned another night owl clone of myself in Thomas.  He is often up until 10:00 or 11:00 with me, happily canning jam or grocery shopping late at night.  Earlier this week we were talking around 10:00 pm, winding Thomas down to go to bed, and got to the subject of Christmas presents.  He wants to make Christmas presents for his friends and brightly suggested that we “do some crafts”.  When I reminded him that it was bedtime he protested, “But I’m not tired.  I want to start a project!”  And for a split second I found myself thinking, “Yes…now is a great time for a project!  It’s quiet, Henry is sleeping…” and then I remembered:  it’s quiet and Henry is sleeping because it is late at night and time for bed!  I am, quite typically, awake until around 2:00 am when I seem to have a natural wave of sleepiness descend upon me.  This schedule worked adequately before I had children, but now I stay up until 2:00 am only to have Henry wake up shortly thereafter which means I don’t fall asleep soundly until around 3:00 am.  Then Henry wakes up once more before his ultimate wake-up time of around 8:00 am.  And of course, he could care less if it is a weekend or not.  The end result is that I am chronically sleep deprived.  And with rheumatoid arthritis, sleep deprivation is a double-edged sword resulting in not only exhaustion, but relentless joint pain – pain that is only improved with rest.

You might suggest that I hire a housekeeper or a gardener or that I could actually (gasp!) buy bread.  But quite frankly, that’s not going to happen.  Not just because such things are expensive or big uses of energy but because doing so will make me feel sick.  Wait, didn’t I just say that overdoing things makes my arthritis flare?  Well, yes it does, but even when I am in agonizing pain I don’t usually feel sick.  But when I have to give up something I love doing because of my arthritis I do feel sick – and weak and that is something I hate more than almost any amount of pain.  Rheumatoid arthritis has taken a lot of things from me and if takes my ability to be productive I feel like it will have taken me.

But I am trying so hard to step off this train of projects and slow down.  I don’t enjoy pain and I want to be able to be a good role model for my children in terms of taking care of myself.  I am doing that by prioritizing.  It’s important to me to make our own bread and jam, but as much as that book “Home Cheese Making” tempts me on my shelf I’m getting my mozzarella at the grocery store.  Our little farm/garden is picture perfect, but I didn’t prune my roses for four months.  And even though there are nearly always dishes to wash, one last email to send, or another sentence to write in a baby book, sometimes I just go to bed.  I am coming to terms that it is quite allight to accomplish n+1 every day rather than n+10.  I’ve accepted that forward progress does not mean that every one of life’s incremental steps is positive, instead sometimes I stand still or even take a step back.  It is the big picture over weeks and even years that is positive.  So, this year I am purchasing more Christmas presents than I am making (a step back from last year).  I make bake 90% of our bread (standing still).  And today I am not as tired as I was yesterday because I allowed myself to take a nap yesterday (forward progress).

* Simulnap = simultaneous nap = awesome.

On Monday morning I go back to work.  Work “outside the home” as they say.  Need I even say that parenting is the most taxing work I have ever done, inside or outside of a house?  I knew going back to work again would be hard.  It was the first time [with Thomas] and I assumed it would be the second time.  I had hoped that this go ’round might be a bit less hard, however.  At T-5 days that doesn’t seem to be the case.  I find myself filled with dread.  The first few months of Henry’s life were spent alternatively enjoying my perfect little family and battling a deep long-standing depression.  Most days I barely held my head above water only to drown in an ocean of tears nearly every night – exhausted, emotionally pulled in opposite directions by two demanding little people, and physically battling a resurgence of my rheumatoid arthritis.  Now, I am on much more solid footing.  I got therapy.  I got help from family (a deepest thank-you to my in-laws who took Thomas for about 36 hours every week during the summer).  I got some regular exercise.  I got some sleep.  Most days I now have my head above water and am able to keep it there.  But I am scared that I won’t be able to juggle it all once a job is added back in and that I will sink once again.  And oh how I know I will miss my kids.  Henry is still so little that it seems he changes on a daily basis.  The longest I have been away from Henry since he was born was three, five hour stretches.  And by the end of those five hours I was literally speeding down the street to get back to my sweet boy.  I don’t want to miss a moment of his all too short babyhood.  I don’t want to “feed” a machine three times a day rather than my cuddly baby.  Thomas may be older but I love spending time with him, listening to his stories, watching him make new discoveries.  Everything is made all the worse by a job that I have no passion for.  I could see taking time away from my children if my job meant something to me and I was making a positive impact on the world, but I don’t think pushing numbers in a spreadsheet or massaging PowerPoint charts count as soul fulfilling work.

I have to go back, I have no choice.  We really are doing fine financially, still living below our means, but as long as we live here and desire such niceties as prescription drugs and a roof over our heads I have to work.  I am beyond happy that I only have to go back three days a week rather than full-time.  I am in awe of the mothers I know who go back to work full-time with young children – it must be almost unbearably difficult.  Ever the planner, I’ve starded to gather the things I will need for work:  my laptop case, boxes of milk storage bags, updated pictures of the kids.  This has, of course, not escaped the notice of a persecptive prescholer and yesterday Thomas stopped suddenly in mid-play, turned to me and said “I’m sorry, Mama”.  “What for?”, I asked fearing something along the lines of a toileting accident.  “I have to go work” he replied with a heavy sigh and a look of dejection,  but he then added brightly “I will come back”.  Next Monday I have to go to work, but I will come back.  I will always come back.  And my heart, well, it never really leaves home at all.