Bringing Home Baby Without Breaking Your Body (or, “Shopping With Arthritis: Baby Care Items and Strategies”)

Although I was predisposed to thumb pain by having arthritis, I could have prevented more of it by holding my baby with my thumb tucked next to my fingers rather than in the position you see here!

Although I was predisposed to thumb pain by having arthritis, I could have prevented more of it by holding my baby with my thumb tucked next to my fingers rather than in the position you see here!

Despite infants’ diminutive size and stature, caring for a new baby is a very physical job! Many new parents and caregivers experience joint or muscle pain after repetitive stress caused by lifting, carrying, diapering, and holding their baby. It’s estimated that between one quarter and one half of new parents experience DeQuervain’s tenosynovitis (or “Mommy thumb”) alone, not to mention pain in other areas such as the wrists, shoulders and back. These issues are of course exacerbated by chronic underlying illnesses such as autoimmune arthritis.

From my experiences as a new mom with rheumatoid arthritis and from my training as an occupational therapist, I would like to share tips on my favorite baby items and strategies that can help preserve the caregivers’ joints and muscles*. I will highlight general “joint protection strategies” in orange as we go along.  This comprehensive guide to joint protection strategies for persons with arthritis has particularly helpful pictures to illustrate the safest way to perform daily activities. I strongly recommend you also read the following articles, which provide a nice overview of proper body mechanics to prevent pain and strain from bringing home baby.

Baby Clothes & Swaddles

This was one of my favorite outfits - easy zipper, stretchy material, plus it's a one piece! Charlie loved it too.

This was one of my favorite outfits – easy zipper, stretchy material, plus it’s a one piece! Charlie loved it too.

If you’re anything like me, you’ve probably oohed and aahed over your fair share of baby clothes. They are so irresistible, from the little overalls to the teeny tiny socks to the baby animals stitched into every corner!  If baby clothes were as easy to put on and off as they are cute, the 12-14 diaper changes a day during the first couple months would be a heck of a lot easier. Unfortunately, baby clothes often come with a mind boggling assortment of small closures, which can be difficult for those with joint pain (especially as the baby gets older and squirmier during changing time!). The most important clothing considerations for me have been:

    1. Resistance: How stretchy is the material? Clothing items with stretchy neck and arm, leg and waist openings are much easier to manipulate and get onto your child without causing excessive strain on your joints.
    1. Tightness of fit: It is easier on my joints to dress Charlie in clothes that are slightly loose rather than tight. Take care, however to stick to outfits that are snug around the upper body and neck to avoid a smothering hazard while they sleep.
    2. Closures: How is the clothing item secured – zippers, snaps, velcro, buttons or something else? I have come to prefer zippers and velcro as they require much less stress on my thumb and finger joints and are also quicker to take on and off than snaps or buttons. For the uninitiated: most clothing items have either zippers, snaps or buttons, most bibs have either snaps or velcro, and swaddles tend to have either zippers, velcro or snaps. Please see the chart below for my opinion of the relative ease of different closures.

ZIPPERS

SNAPS

VELCRO

BUTTONS

Easy on the finger/thumb joints?

YES

NO

YES

NO

Quick to take on/off

YES

NO

YES

NO

Keep baby’s top warm while you change diaper

NO

YES

IT DEPENDS

IT DEPENDS

I'm all about the zippers!

I’m all about the zippers!

The main reason snaps are harder than zippers/velcro is that the action required to fully “snap” them together requires direct force to the thumb and finger joints, whereas with zippers/velcro you are holding the material in a static position and using your larger joints/muscles to create the motion required to secure them. So, the recommendation for using velcro/zippers over snaps falls under the joint protection strategy of “always use bigger/more joints when possible rather than requiring your tiny hand joints to absorb the main force of an action.”

I recommend that if you have outfits with snaps, consider just snapping the middle of the 3 snaps to save some stress on your joints. Additionally, not all snaps are created equal; some are easier to snap and unsnap than others, so test them out before selecting clothes for your little one. I completely avoid items with buttons with the exception of special occasion clothing, since they can be so cumbersome to secure.

The only downside to zippers is that they tend to expose the baby’s trunk during a diaper change, since most zippers start at the top. In this case, I recommend you simply put a blanket on their tummy to help them maintain a cozy body temperature as you change them.

Swaddles:  I found the pre-formed ones with zippers or velcro (such as Summer Infant SwaddleMe, Halo Sleep Sack or the Woombie) to be by far the easiest to close and open. As with other clothing items, consider the stretchiness of the material as you select a swaddle.

One of our cute velcro bibs.

One of our cute velcro bibs.

Bibs: Consider using bibs with Velcro rather than snaps for as long as possible as Velcro produces less direct strain to your thumb joints. Once the baby starts ripping off the bib, you might have to change to snaps as they tend to be harder for babies to take off. We really like the Tommy Tippee Velcro bibs and the Zippy bandana bibs, which have relatively easy snaps.

One piece outfits versus 2+ piece outfits: I’ve definitely come to prefer one piece outfits (usually marketed as “pajamas”), as they require you to put on just one item of clothing and many come with zippers. However, it might be easier to put two loose/stretchy items onto a squirmy baby, so I recommend doing some trial and error with your babe and seeing which is easiest.

Additional tips: I would recommend minimizing the total amount of clothing changes you attempt/do in a day. Does your child really understand or care about the concept of “daytime” clothes versus “pajamas?” Unless there is a temperature, cleanliness or safety related reason for them to wear a separate outfit, I avoid changing just for the sake of it being a certain time of day. The exception is safety related to sleep: as mentioned earlier, it is not recommended for babies to sleep in hats, hoodies or other loose clothing, for the same reason it’s not recommended to sleep with blankets – there’s a risk of entrapment and thus suffocation. My overall recommendation is to conserve your energy and joint expenditure and minimize clothing changes when possible, as long as that is safe for baby!

Diapering & Changing stations

Since you will be changing 10-15 diapers a day in the early days, it’s important to consider how easy the diaper is to put on and take off and the ergonomics of where and how you will be changing them.

Diaper's on, mama, time to play now!

Diaper’s on, mama, time to play now!

1) Diaper Characteristics: Your main options are cloth diapers versus disposable. I don’t have any personal experience with cloth diapers, but I know that they come in two main options: snap versus Velcro. This post provides a comprehensive overview of the two options, and you might not be surprised after reading the clothing section that Velcro is reported to be the easiest on the joints (however it is less durable).

Most disposable diapers have similar closures that are as easy as Velcro, but you might want to try a few brands to see what is easiest on your body. I have used Pampers and Huggies with similar ease, and found the Honest Company brand diapers to provide slightly more resistance and thus require a little more force/strain on the fingers than Pampers or Huggies.  The same concept of “stretchiness” from above applies: the stretchier the diaper material, the easier it is to stretch the closure around the baby’s body and thus less force required on your joints when you are going to change them.

2) Set-up of changing area & body mechanics: I encourage you to consider the ergonomics of your changing area(s). Your main options are: buy a special changing table, use the changing table extension on a crib item such as the Pack ‘N Play, and/or use a travel changing pad on whatever surface is nearest you (such as a counter, couch or floor).

You don’t want to have to bend down too far to reach the baby – image credit to http://www.sheknows.com/parenting/articles/817289/The-dos-and-don-ts-of-diapers.

Regardless of what you choose, it’s generally advised to change the baby on a surface that is slightly below the level of your elbows so that you don’t have to reach up or bend down excessively (which can cause strain on the back and/or knees). This article provides a nice overview of how to set up a changing table, and I will echo their suggestion that you make sure all your important items are nearby (wipes, clean diaper, cream, hand sanitizer, etc) so you won’t be tempted to leave the baby to grab something quickly and you can avoid excessive bending/lifting/carrying of items.

3) Location of changing area: As mentioned in my previous post on caring for the caregiver in the early days, consider having multiple diaper changing areas so that one is convenient to you. This allows you to save energy and minimizes the distance you have to carry the baby; little changes can add up quickly, especially if you are experiencing pain and inflammation.

Feeding related items

Yes, babies mostly “eat, sleep and poop” in the early days, so we’re covering these items first! Your main options for feeding in the first 6 months are breastfeeding, bottle feeding, or “combo feeding,” which involves a combination of breast and bottle feeding. This area is hugely complex, and I am just going to focus on areas that are specifically relevant to protecting tender joints and preventing repetitive stress injuries.

I have a pillow under my right arm here and am attempting to keep my left hand in a neutral position to minimize strain on my body while feeding Charlie.

I have a pillow under my right arm here and am attempting to keep my left hand in a neutral position to minimize strain on my body while feeding Charlie.

 1) Body mechanics: Whether breast or bottle feeding, be aware of your body position and try to assume positions that result in the least amount of stress/strain on your body. This sounds obvious, but trust me, for many people getting the hang of feeding will require an intense amount of focus on the baby and it will be easy to forget to protect yourself during this process. This article provides a fabulous and comprehensive set of instructions for the ergonomics of feeding and includes some really great pictures, so I encourage you to check it out.

Being aware of proper body mechanics while feeding is very important because you will typically be feeding at least 8 times a day during the first 3 months, usually down to 5-6 by 4-5 months. Most people use pillows such as the Boppy or My Breast Friend whether bottle or breastfeeding, as the pillows support the baby’s body weight and thus minimize potential shoulder strain. Also consider your wrist position as you hold the bottle, breast or baby; it’s best to avoid extreme or awkward angles. Take care to remain as upright as possible, rather than slumping downward towards the baby (easier said than done!).

2) Breastfeeding specific items:       

Me in one of my many robes, which I found super useful while breastfeeding.

Me in one of my many robes, which I found super useful while breastfeeding.

 Clothing items: Consider avoiding “nursing tanks” or bras if possible, as these often require weird/awkward wrist and finger positions to get them on and off, from my experience. I found it easiest to live in simple loose robes for the first 8-10 weeks of Charlie’s life. If you do need to use special nursing bras, tanks and other clothes, be sure to test out the closures beforehand to make sure they are as easy to open and close as possible.

 Breast pumping: I highly recommend getting a bra that allows you to be “hands free” to minimize stress on finger joints and awkward wrist angles required to hold the bottles otherwise. As a  bonus, most of these bras zip up the front, which is easier on the shoulder joints than “regular” bras which typically are secured in the back!

3) Bottle feeding: Your decisions around what bottle type to choose will likely be affected by your baby’s specific preference in addition to what is easiest on your joints. Most people have to try a lot of different brands before finding a good fit, so be patient during this process!  I recommend considering the following as you select a bottle type/brand in order to minimize stress on the joints:

    • Bottle parts everywhere!

      Bottle parts everywhere!

      How many little parts are there, and how easy are the parts to put together/take off? These two are related, as you can probably deal with a brand with lots of little parts as long as they are easy to put together/take apart.  I only have experience with the Dr. Brown’s brand, and most of the parts are easy with the exception of the vent tube (cylindrical shaped object) and vent insert (or as my husband and I call it, the “white thing”). I would recommend testing out friends’ bottles and brands before making a choice!

    • How will you clean the bottle parts? Since most bottles have lots of little parts, cleaning them can be a big job. I found the medical advice on how to wash/sterilize bottles to be confusing, and I encourage you to ask your pediatrician or nurse if you have questions. Your general options are to wash by hand or in the dishwasher, the latter of which is obviously easier on the joints! To sterilize parts, you can boil the parts or purchase a microwave steam bag, both of which are relatively easy on the joints.
    • Ready to feed formula bottle option: If you are formula feeding it is recommended to use “ready to feed” bottles for the early days (again, precisely how that is defined varies depending on whom you ask). These bottles are by far the easiest on your joints as they come pre-mixed and assembled, however they are also the most expensive by a very wide margin as compared to powdered or liquid formula.

Movement items: Baby Carriers, Strollers, Car Seats

8 carrier

Things I love that are captured in this photo: 1) my baby, 2) my Moby wrap, 3) CHOCOLATE.

1) Baby carriers. Baby carriers are a great way to minimize stress on the hand joints…once you have them on! When designed and fitted correctly, carriers can keep the baby close to the center of your body so the baby’s weight is distributed and supported by your large joints rather than your small wrist/hand joints when you are carrying them.

There are many different resources to help you decide on the best and safest carrier(s) for you and your baby, and most major cities have “Baby wearing” groups where volunteers let you try on different carriers and help you decide between the overwhelming options. I am not an expert in this area, but from my experience I will highlight aspects of baby carriers that are particularly relevant for people with arthritis or related joint issues. I recommend considering the following as you decide on a carrier:

    • How easy it is to take on and off? Specific items to consider include:
        1. The Pikolo has nice adjustment straps on both sides.

          The Pikolo has nice adjustment straps on both sides.

          Closures and adjustment mechanisms: Does the carrier require lots of pinching or pulling in order to secure or tighten it? If you have thumb pain (as I do), this is particularly important as many of the closures require pinching with the thumb joint. Are the straps easy to tighten and loosen? Are they located on both sides or just one side? For example, I like that the Pikkolo has strap adjustment areas on the left and right side of the bottom part of the carrier (as opposed to the Ergo, which has just one), so that I can choose to tighten/loosen the side with the hand that is experiencing the least pain in the moment. A general principle of joint protection which I alluded to earlier is that you want to spread the force across multiple joints rather than requiring one joint to absorb all the force for an action (and on a related note, for the kind of arthritis I have that affects the small hand joints most, you want the force to be absorbed by bigger joints when possible).

        2. The K'Tan is conceptually easy but since it's tighter fitting, it caused more stress on my joints than the Moby.

          The K’Tan is conceptually easy but since it’s tighter fitting, it caused more stress on my joints than the Moby.

          Resistance the material provides as you put it on or have to put baby in it: Soft carriers such as the Moby and K’Tan are really comfortable for the baby, but they differ in how much force is required to put them on. For example: the K’Tan eliminates the sometimes confusing process of getting the wrap onto your body, but since it is “fitted” to your body size (it comes in specific sizes as opposed to the one size fits all Moby), I found it required more force to open the fabric wide enough to get the baby in than the Ergo or Moby.

        3. How does this product support the baby’s weight so that you don’t have a lot of stress on your back or other tender areas? In my personal experience, the carriers that require closures such as the Ergo and Pikolo seem to distribute the weight of a heavier baby a lot better than soft carriers such as the Moby. Again, a lot will depend on your own body mechanics and the size/shape of your little one.
        4. The Ergo fits myself and my husband equally well!

          The Ergo fits myself and my husband equally well!

          Versatility of wearer: can this item be used easily by a partner/friend so they can take some of the load off you (literally)? The Ergo and Moby were great in this regard, and the K’Tan is not as versatile in this way.

        5. General advice: I recommend having a few different carriers or using one carrier with a few different “holds” so that you don’t cause repetitive stress on one area of your body. Look at your carrier’s guidelines for what ages / stages are linked to different holds; it can be confusing because keep in mind that babies reach stages at different ages.

2) Car seats: I highly recommend you utilize resources such as The Car Seat Lady as you make a car seat decision. The main items relevant to protecting the caregiver’s joints are as follows: seat weight, buckles/closures/straps (how easy are they to secure and tighten/loosen), seat design (infant versus convertible), and how easy it is to put in and take out of the car.

        • My husband holds the Chicco infant car seat with ease on Charlie's first day home.

          My husband holds the Chicco infant car seat with ease on Charlie’s first day home.

          How heavy is the car seat? Weight is important if you are using an infant seat and plan on taking the baby in/out of the car while in the seat, but it may not be as important when you get to the convertible or booster stage when you will likely not be moving the seat in and out of the car as often. I used the Chicco Key Fit 30 infant seat, which is one of the lightest yet safest options, and we really loved it – no complaints at all! I “hooked” it in my elbow and tucked my elbow close to my body when I carried it, which helped minimize strain on my hands.

        • How easy it is to put the car seat into and out of the car? You will want to try this yourself because the ease will depend on your specific issues and the size/shape of your car and the seat in question. Regardless of your car set-up, remember to follow basic joint protection strategies and carry the car seat close to your body with your larger joints as much as possible, to minimize stress on your fingers.
        • Most car seats have 2 kinds of buckles (one near the pelvis, in red here, and one on the chest, in black). They are tightened/loosened by simultaneously pulling on the thing at the end (past the orange blob) and pulling on the straps (in gray).

          Most car seats have 2 kinds of buckles (one near the pelvis, in red here, and one on the chest, in black). They are loosened by simultaneously pulling on the gray strap near baby’s foot(past the orange blob) and pulling on the straps (in gray), and tightened by pulling just on the gray strap at the bottom (phew!).

          How easy is it to tighten/loosen harness/straps? Keep in mind that this will be important as you will be loosening the straps every time you get the child out of the car, and tightening them each time you put them into the car seat. In most car seats, you tighten the harness by pulling up on a strap at the bottom, which can definitely be hard on the hand joints.

        • How easy are the buckles to clasp and unclasp? Unfortunately for caregivers with tender joints, car seat buckles seem to be difficult to manipulate as they have to be resistant enough to prevent a child from successfully unbuckling themselves. Again, be sure to try this aspect before you purchase a seat. I found our infant buckles were way easier on my thumbs than our convertible seat’s buckles.

3) Strollers

Strollers vary widely in weight, ease of pushing, ease of folding up/securing, ease of getting baby in and out and resistance/ease of closures. The the same concepts from baby carriers and car seats apply to strollers regarding harness straps and buckles. In addition, I found it important to consider:

        • Gabe rocks the lightweight Snap 'N Go.

          Gabe rocks the lightweight Snap ‘N Go.

          How easy is the stroller to fold and unfold? I have a Snap ‘N Go (which only works for my infant car seat), BOB Revolution for working out and longer/bumpier walks and the City Mini Baby Jogger (which specifically states in it’s instruction manual that it is NOT a jogging stroller!) for shorter trips.  They both fold super easily (video for City Mini here, and BOB Revloution here), but the City Mini is much lighter and more compact and thus easier to put in and take out of the car.

        • How easy it is to put the baby in and out of safely? The same buckle/strap issues apply from the car seat section. In terms of initially getting the baby in and out of the stroller, however, strollers allow more wiggle room than car seats. With a car seat you have to work within the confines of the relatively small door opening, whereas with a stroller you can move your body around either side of the stroller or stand directly in front of it to put the baby in comfortably, depending on how you are feeling.
        • The BOB Revolution is great for uneven surfaces and even works on sandy beaches!

          The BOB Revolution is great for uneven surfaces and even works on sandy beaches!

          How easy is it to push over the types of terrain you expect to traverse? Here’s a classic example of a tradeoff; the BOB is heavy to lift and put into and out of the car, but it is extremely light and easy to push over a wide variety of terrains. The Snap ‘N Go is extremely light and easy to fold/unfold and put into and out of the car, however it requires more force/stress on the hand joints to push, particularly over any terrain that is not entirely flat. So, keep that in mind as you make stroller decisions!

        • General recommendation: Remember to pay attention to your body mechanics as you fold/unfold and put the stroller into and out of various places (“lift with the legs, not the arms!” and keep the stroller close to your body).  Think about “activity conservation” and try to minimize the amount of times you have to take the stroller into and out of places; for example, I try to really consolidate my errands and social activities so I’m not constantly battling the stroller and car seat.

Cribs, bassinets and other sleep items

The baby will be sleeping a lot in the early days, and it is advised to practice good body mechanics as you lift baby into and out of the crib in order to avoid excess stress on your body. In the early days I found it useful to utilize portable cribs, however once our baby could roll over and sit up independently, options became more limited and we ended up using the crib almost exclusively (although he does still take some naps on me in the Ergo baby carrier, which is like a wonderful, heavy, warm hug!). I recommend that you consider the following:

Charlie in his 4 in one crib, which has a higher setting for infants, lower setting for standers, and can be used as a toddler and big kid bed.

Charlie in his 4 in one crib, which has a higher setting for infants, lower setting for standers, and can be used as a toddler and big kid bed.

For immobile cribs: Does it have a higher up option for infants? This is really helpful for the early days to prevent excessive lifting/bending. Since “drop down cribs” have been ruled unsafe for babies, you will have to do some level of bending in order to get the baby in and out, but the higher up infant setting minimizes the amount of bending down you have to do. Most cribs marketed as “4 in 1” will have that option.

For portable cribs: There are 3 elements to consider for your joint protection when it comes to portable cribs: how easy are they to fold up and take down, how easy are they to transport, and how easy are they to place the child into and out of?

Charlie snoozes in the flat Rock 'N Play.

Charlie snoozes in the flat Rock ‘N Play.

Some of the folding ones such as the Rock ‘N Play portable bassinet place the baby higher up than others and thus require less bending when you put them in and lift them out, which is a nice bonus.

There are also semi-portable options such as the “Arm’s Reach Co-Sleeper” which can be really helpful as it attaches to your bed so that you theoretically can just roll over and attend to the baby’s needs rather than having to get up and then bend down and pick up the baby, yet it keeps baby away from potentially unsafe hazards such as soft bedding and blankets.

Final recommendation: Seek help if you are in pain

If you feel a degree of pain that prevents you from performing basic or essential tasks to care for your child, seek help from a medical professional! On a few parenting message boards/Facebook groups, I’ve heard stories from mothers who have waited too long to get help because they were embarrassed or felt silly for feeling pain over something “so basic” as caring for a child. Please know that caring for a child is a very physical job, and medical professionals can provide many options for minimizing current pain and prevent future pain.

My hard splint made of thermoplastic helps keep my wrist and thumb protected as I lift and carry Charlie.

My hard splint made of thermoplastic helps keep my wrist and thumb protected as I lift and carry Charlie.

For example, I have a total of 4 splints to address wrist and thumb pain from caring for Charlie and my job as a pediatric occupational therapist; they hold my wrist and thumbs in place to help as I pick him up and put him down. The harder splints really help support Charlie’s weight and I’m so glad I was proactive in getting a referral to a Certified Hand Therapist before the pain progressed further. Splinting can help support your joints and minimize additional pain and inflammation from performing daily activities.

Conclusion

In conclusion, I simply recommend that when selecting baby items, you consider the stress the items may cause on your body. Preparing for a baby can be very overwhelming, and it’s easy to focus so much on the baby that you forget to consider what might be best or most appropriate for the caregiver. Long term, the baby will be best served by a caregiver who can use their body to the maximum of it’s potential, so you’re doing both your baby and yourself a favor by protecting your joints!

19 holding charlie

Here, I am holding charlie in a way that minimizes stress to my small hand joints; his bottom rests on my right forearm and I am securing him to my chest with my left forearm with my thumb close to my pointer finger.

20 holding charle

In this picture I’m holding Charlie in a way that causes much more stress on my thumb and small hand joints than in the picture on the left. This hold is definitely not ideal, although at times it’s hard to resist!

 On a final note, while it’s super fun to discuss and list what products to buy, please keep in mind that the way in which you interact with the items will likely play the largest role in how you are able to minimize joint pain and prevent repetitive stress injuries.

There are many more items I did not cover, for fear this post would become even longer and more unweildy. These items include: bathing related items, toys, and older baby feeding items such as high chairs, spoons, cups, etc. However, as you’ve seen, the same principles apply across a wide variety of items. Please let me know if you have any additional thoughts/recommendations in the comments section, especially those with joint pain (either chronic or caused by repetitive stress during child rearing)! Do you have any additional tips/suggestions? Let me know in the comments section!

*The information contained on this blog should not be used as a substitute for the medical care and advice of your doctor and your child’s pediatrician.

Posted in baby, Occupational Therapy, parenting, Rheumatoid Arthritis | Tagged , , , , , , , , , , , , , | Leave a comment

The Role of Facebook Communities in Social Participation for Persons with Rheumatoid Arthritis: A Content Analysis

Below you will find the research poster my colleague Kristin Jones, OTR/L and myself presented at the American OT Association’s annual conference and the Washington OT Conference. We also presented a version of this research at the World Federation of Occupational Therapy Conference in 2014.

This independently conducted qualitative research study was inspired by my experiences as a patient participating in rheumatoid arthritis-specific Facebook groups. Over time it became apparent how relevant the discussions were to occupational therapy’s unique domain. I observed that people used these groups to share their personal stories, provide and gain personal support, and share advice/ideas about how to perform activities of daily living with the least amount of pain possible.  In order to objectively assess the communication content, my friend and colleague Kristin Jones and I performed the data analysis seen below in the “data overview” section. We are now brainstorming practical applications for this research – stay tuned for more!

RA Social Media AOTA Poster Pie Chart Gif

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Bringing Home Baby: Tips for Meeting the Caregivers’ Basic Needs

IMG_7012

Being born and growing up is a tiring job, as is caring for a little one!

It’s hard to put into words how simultaneously joyful, exhausting, transcendent, stressful, surreal, and miraculous the first few months home with an infant can be.  Now that I’m emerging from the fog but the experience is still fresh in my mind, I’d love to share some tips and strategies that helped me adjust to parenthood* over the last five and a half months.

While pregnant, I found countless resources for how to care for a newborn, from feeding to sleeping to swaddling to safety. However, there were less resources available for how to care for myself and other primary caregivers in the newborn days. Thus, I will focus on these strategies as they are not as adequately covered elsewhere.

Caring for the Caregiver(s)

Charlie’s second day on earth, enjoying a calm moment at the hospital.

Many countries have postpartum practices that allow at least the mother to rest and recuperate in the early weeks after delivery (if not extended paid maternity and paternity leave). Since the United States is sorely lacking in this regard, I would strongly urge all new and prospective parents here to prepare just as thoroughly for how they will take care of themselves as how they will take care of baby in the postpartum period.

Here’s the hard thing to understand about the first months home with an infant before you experience it: everything that has to get done is not objectively very hard to do for a short period of time. The difficulty arises from the sheer volume and pace at which you must complete tasks, which are presented to you in a completely erratic and unpredictable order, without adequate rest and while your body is still recovering from delivery (phew!).

You might have heard the phrase, “Put your oxygen mask on first” with respect to airplane safety. Looking back, I know that I was simply much better poised to take care of Charlie’s basic needs when my needs were met to the extent they reasonably could be.  Here are the strategies that worked best for our family.

Prioritize Sleep (Which Likely will Involve Getting Help)

2

Nothing sweeter than a sleeping baby…unless you also count well rested parents!

If you do nothing else, set up systems that will allow the primary caregivers to get some uninterrupted sleep. You would never expect someone to simply push through extended periods without food, yet many feel they should be able to power through chronic sleeplessness after the birth of a child. This is simply not physiologically or psychologically healthy for most people (aside from a lucky few).

Recent studies have found that sleep deprivation is correlated with reduced cognitive functioning and such adverse physiological effects as reduced endocrine and metabolic function. Psychologically, some studies have found that fragmented maternal sleep is correlated with increased depressive symptoms, and sleep deprivation is generally associated with more negative mood states. Interestingly, another recent study found that postpartum sleep deprivation and fatigue appear to affect both primary caregivers similarly, thus it would behoove the family to take means to protect the sleep of all primary caregivers.

3

It’s not safe for you to fall asleep with the baby asleep on you, unless someone else is committed to watching the baby while you both rest (to make sure the baby doesn’t get smothered or roll off).

I anticipated that sleep deprivation would be the most challenging aspect of the first 3 months home with an infant, and it was. I had prioritized sleep long before I knew the link between restorative sleep and reduction of rheumatoid arthritis and other autoimmune disease activity, and my main plan was to “sleep when the baby sleeps.” However, this was not consistently possible due to adult and infant circadian rhythms being so different, an infant’s need to feed every 1-3 hours, all the time it takes to soothe the baby to sleep, the fact that infants are often noisy sleepers, and some additional breastfeeding complications which required that I wake up regularly to feed the baby or pump breast milk.

So, what specifically can one do to cope with the lack of consistent sleep? My best advice is to maximize your sleep opportunities. Here are six strategies that helped me:

1) Have someone take the baby away from you in between feedings and rock/lull them sleep and take care of other essential tasks.  This was the single most helpful thing anyone did for me in the 4-6 weeks after Charlie was born. When you arrange this, I strongly urge you to follow the American Academy of Pediatricians’ recommendation to ensure all caregivers who will come into close contact with an infant be up to date on their TDAP (whooping cough and tetanus) and flu vaccines, as these can be fatal for infants.

4

Bless her heart…my sister bringing Charlie in to my room for a feeding, then swaddling him and taking him downstairs so I could sleep until the next feeding.

I was exceedingly lucky to have support from my husband and extended family. For those who don’t have family or friends who are willing to help in this way, consider hiring a post-partum doula or a nanny/babysitter. It might seem strange to spend money on this so early in the child’s life, but sleep deprivation takes a real physical and mental toll on most people and you will be better poised to meet the demands of new parenthood if your basic needs are being met.

If people offer to help who might not feel capable of taking care of the infant, you can also have them sign up to perform household tasks via a website such as LostaHelpingHands. This will give you more opportunities to sleep when you otherwise would have been doing chores.

2) Set “sleep hours” and only allow yourself naps between those hours. This is something I simply learned through trial and error. When I tried to nap around the clock, I often ended up in a frustrating position where I often could not sleep when the opportunity presented itself.  My circadian rhythm dictated that I receive sleep within a certain time frame it was accustomed to, so giving myself “sleep hours” was a nice compromise that afforded naps yet prevented me from getting so off schedule that I could not sleep even when I had the opportunity to do so. It also had a huge psychological benefit by giving me a sense of routine. My ideal sleep hours were between 7pm and 11am, but I suggest that you play around with it and determine what works best for your body’s rhythm.

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Gabe helping with Charlie while I slept.

3)  Try to get at least one 3 hour chunk of sleep per day. Since adult REM cycles are around 90 minutes, I found that my quality of life improved substantially when I was able to get three hours of sleep in a row (ideally twice a day, but at minimum once a day). After my husband went back to work, he would watch Charlie from approximately 7-10pm while I slept. It became very psychologically and emotionally important for me to know that this sleep opportunity would present itself each day.

4) Avoid “screen time” before going to sleep. It was so tempting to check Facebook before going to sleep, despite my profound exhaustion. While it was important for me to feel socially connected during such a disorienting time in my life, I found more success when I followed the recommendations of recent research which shows that exposure to LCD screens can decrease melatonin up to 22%.

5) Approach your sleep time as “rest time” to take the pressure off. After a couple weeks of sleeplessness, I started becoming panicky about maximizing each of my sleep opportunities. This anxiety of course worked against me, as it made it harder for me to fall asleep. My husband suggested taking the pressure off by viewing my sleep opportunities as “rest” opportunities, which helped immensely. It was important to just close my eyes and get a break, whether or not I could actually sleep during that time.

6a

This was a happy moment about 4 hours before my (painful and debilitating) third case of mastitis (a systemic breast infection), which required me to wake up every 3 hours to pump breast milk or feed Charlie.

6) Be flexible, and understand the relationship between infant feeding decisions and caregiver sleep. Decisions  about how to feed your infant are inextricably linked to the mother’s potential to obtain consecutive hours of sleep.  If you choose to breastfeed exclusively from the breast (as opposed to providing pumped breast milk), your sleep potential will logically be reduced as compared to exclusively formula feeding, or “combo feeding” (which includes combining breastfeeding, pumping and/or formula feeding), assuming you have some help available.  As with most parenting decisions, feeding decisions don’t exist in a vacuum and what might be best for one entity might not be best for another. Only you and your family can decide what is right for you. It took some trial and error for us to settle on a solution that provided best for both Charlie’s and my health and wellbeing.

Employ Pain Management & Prevention strategies

After the birth of a child, the mother’s will likely experience some pain during the recovery process. The most helpful physical and pain management strategies for me were:

7

A few hours after Charlie’s birth, while the intense pain medications had not yet worn off.

1) Stay “on top of your pain,” by which I mean employ pain management strategies before you are in dire need of them. As always, consult your doctor for all medication related decisions. I found that I was much better poised to take care of myself and Charlie when I took my pain medication on a regular schedule (especially during the first week) rather than waiting until the pain was unbearable.

I also used non-medicinal pain management strategies such as deep breathing, icing, distraction and a belly wrap (which was particularly helpful while moving from sitting to standing). If you cannot take pain medications or prefer not to, I would strongly recommend preparing non-pharmacological tools and strategies prior to delivery, as you may be too overwhelmed to sort through them later. The American Academy of Pain Medicine has some good resources for learning more about pain and even has a video on non medicinal strategies for combating pain.

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It may appear that I am leaning towards Gabe for a snuggle, but I actually could not physically stand up any straighter than this at the moment.

2) Understand proper body mechanics when doing basic movements such as moving from laying down to sitting up at the edge of the bed, going from sitting to standing (in bed or from a chair), and going up stairs. As an occupational therapist, I’m a huge advocate for this! Knowing the most efficient way to perform basic movements will help prevent unnecessary pain and strain to your abdomen and pelvic region. Kaiser has a great handout with tips here.

3) Don’t be afraid to ask for help. It’s better to have extra help when getting out of bed than to realize you need help in the middle of a movement and risk falling due to pain!

Toileting: Prepare for bumps in the road ahead of time

Going to the bathroom is just one of those daily life tasks that one can’t simply put off postpartum. Here are some things to think about ahead of time:

1) How will you get to the toilet: Do you have stairs in your house? They might be difficult to climb for the first few days/weeks regardless of how you delivered. There is no shame in getting a “bedside commode” to use as a temporary toilet if you find it difficult to safely get to yours.

Gotta love prune juice!

2) How will you manage (probable) constipation: It’s not the most glamorous of postpartum topics, but constipation is very common postpartum (especially for those who delivered via C section). If you prevent constipation, you are less likely to have hemorrhoids and will avoid additional pain from straining. Stool softeners and prune juice are effective for many new moms (as well as expecting mothers).

I was proactive in preventing constipation the week before my C-section to give myself the best chance of avoiding constipation and I was pleasantly surprised that this strategy paid off!  It may feel awkward to think about toilet topics now, but trust me, pretty soon your daily life will involve a lot of bodily functions (on the part of your child if not yourself) so it’s best to get used to it now. I urge you to do anything you can do make your postpartum life easier on yourself so you can focus on your precious new one!

3) Post-Delivery Healing:  Educate yourself prior to delivery on things you can do to help minimize pain and maximize healing in your pelvic region. Your healthcare team should also provide specific recommendations for scar/incision management, preventing infections, and more. It can be easy to overlook these recommendations  when you are probably more excited to care for the new baby, but in the long run you likely won’t regret putting extra care into your own physical healing.

Prepare easy to eat (preferably one-handed) snacks/meals and drinks ahead of time

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Thanks mom for bringing over some delicious food (pictured at the back).

New moms are often encouraged to prepare food prior to baby’s delivery, particularly if they are feeling in the “nesting” spirit. In addition to the classic freezer meals, I would recommend making sure you have plenty of meals and snacks that you can easily eat one handed. Your hands will often be full with feeding, soothing, changing diapers or just holding your precious baby as they sleep, so one handed meals/snacks are crucial.

Additionally, always accept anyone’s offer to bring you food (you can even use a site such as MealBaby to organize meals).

Some of my favorite postpartum meals and snacks included:

1) Caveman, Zing, Kind or other similar “power” bars that have a good mix of protein, fat and carbohydrates, and/or trail mix.

2) Burritos and “wrap” sandwiches Pro tip: wrap them in a ziplock baggie and hold the burrito or sandwich by the bottom of the bag and slowly peel it back as you eat it, to avoid messes and also keep your hands clean.

smoothie3) Smoothies- You can never go wrong with a smoothie, especially one with lots of protein.

4) A water bottle with a handle and a long straw. This is absolutely crucial – the handle allows you to grab it one handed, and the straw allows you to drink while also nursing or otherwise holding your child. I can’t find a link to one with the same length of straw as the one I received at the hospital but this one looks promising.

5) Grocery delivery: See if any grocery stores nearby offer home delivery. For example, Safeway has promotions where your first delivery is free, and they offer discounts if you are flexible about the delivery time. Alternately, ask a visiting friend to pick up necessary items on their way over for a visit.

Prepare Your Home Environment to Make Life Easier 

Before the baby comes, assess your home environment and see if there are any opportunities where you could make life easier for yourself. Here are a few things that helped us (in addition to the toileting and meal preparation suggestions mentioned earlier):

My necessary items in my handy tray.

My necessary items in my handy tray.

1) Use a tray or other container for all the “stuff” mom will need. Before I confined all my necessary items to a tray within arm’s reach, I found I was constantly asking people to hand me things, from chapstick to power bars to my water bottle. Put everything on a tray and bring it wherever you will be sitting to avoid unnecessary frustration. Here are items I had on my tray:

  • Water Bottle
  • Phone (and separate camera if needed)
  • Hand Sanitizer and moisturizer
  • Chapstick, Eye Drops, tissues
  • Protein Bar and other snacks
  • Feeding baby items (nipple cream, pads, bottles, etc)
  • Baby items (swaddle blanket, burp cloth, extra clothes)
  • Pain medications and other medications as needed
  • Chargers for phone and other electronics if needed (e-reader, breast pump, etc).
  • Something for FUN, in my case a board book. I was surprised at how early Charlie could sustain attention to a book, and reading to him was fun for me too!
Pack 'N Play

Pack ‘N Play works as a changing station and napping area for baby.

2) Consider having baby care “stations” on each level of your house. We had a changing table (with diapers, wipes, extra clothes, etc) and sleeping areas for the baby upstairs in his nursery as well as downstairs in our main living area. The “Pack ‘n Play” worked well for us as it can serve as a changing station as well as a crib. The closer things are to arm’s reach, the easier your life will be in the early days!

3) Have a back up communication plan. Many will plan on using cell phones to communicate, but I would urge you to find a back-up plan or purchase something that will allow you to keep your cell phone attached to your person (such as an arm band or even a fanny pack!). Why do I give such an oddly specific piece of advice? Well, the day I got home from the hospital (2 days after Charlie’s birth) I dropped my phone onto the floor and couldn’t get out of bed independently. I couldn’t easily get the attention of my husband and sister, who were downstairs taking care of the baby. Fortunately, they came upstairs to check on me not too long afterwards, but it was fairly distressing to feel that I needed help and couldn’t communicate.

Snuggling Charlie in the Moby wrap

Snuggling Charlie in the Moby wrap

4) Consider “baby wearing.” 

This is more relevant for the later “early days” when you are more mobile. I found that wearing Charlie in a Moby wrap (the benefits of which are explained in detail here by MamaOT) allowed him to feel secure and close to me while also taking strain off my arms and allowing me to complete tasks in a somewhat “hands free” fashion. We’ve gone through some trial and error to find baby carriers that work for Charlie; right now we mostly use the Ergo but also the Pikkolo and sometimes Moby (but he’s getting pretty big for it now!).

Psychological Tip: Be Gentle on Yourself & Find Support

IMG_7815 copy

Precious bonding moments at around 3 months, as we eased out of “survival mode” and Charlie became more interactive.

Contrary to Maslow’s Hierarchy of Needs, I believe that even when your basic physiological needs (food and sleep) are not adequately covered, you still have a desire for higher social and emotional needs to be met. You will likely have lots of hopes and dreams about parenthood, and many of them may come trueat some point, but probably not in the first few weeks home with an infant. The newborn stage is difficult for most new parents, regardless of the degree to which they remember it (and despite their beseechings that new parents “enjoy every second!“). Be gentle on yourself during this transition.

When things aren’t going as you hoped/planned, “let it go” as much as possible (like most people in America, I’ve had this song in my head for most of Charlie’s life). Baby just peed on you and himself after you just changed his and your outfit? Let it go.  That strategy you just figured out to get baby to sleep that worked for 4 days straight suddenly doesn’t’ work anymore? Let it go. Baby spit up all over them and yourself right after you gave them a bath? Let it go.  It’s just babies being babies.

My little love, at 3 months (right after the "fourth trimester," when we started getting more sleep and feeling better overall).

My little love, at 3 months (right after the “fourth trimester,” when we started getting more sleep and feeling better overall).

It helped me to think of the first 3 months postpartum as the “fourth trimester” (as argued by Gary Karp in the “Happiest Baby on the Block”). The baby developmentally still wants to be in the womb in many ways and will not be as interactive or responsive initially as they will be by around 12 weeks (or earlier!). Try to be as patient as possible and perhaps lower your expectations for the early days. Many new parents refer to the first couple months as “survival mode,” a concept I found useful.

I would also recommend finding some sort of structured social support, either in person or via social media. Here are some options:

  • Your local hospital and/or community college will likely offer “parent-baby” education and support groups. Evergreen Hospital in Kirkland (where I delivered) has a series of parent-baby groups and the 0-3 month ones are all free.  They also have standalone classes on topics such as the  postpartum psychological adjustment. Honestly, it was very therapeutic for me to just sit in a room full of other parents going through similar stages!
  • pepsIf you live in Seattle, the PEPS – Program for Early Parent Support is a great source of in person support. Parents who live near each other and delivered around the same are grouped together and more experienced parents lead the groups and mentor them through the new baby stage.
  • I also enjoyed being part of social media groups (many of which are private). There are many general mom or parenting groups as well as groups specific to different topics such as breastfeeding, formula feeding, and different parenting styles or approaches.

Concluding thoughts about taking care of yourself

Grandma Cee, one of our many helpers in the early days.

Grandma Cee, one of our many helpers in the early days.

Becoming a parent is a gift that is awe-inspiring in a global sense yet frequently messy/complicated during one’s minute-by-minute lived reality. I mention challenges such as sleep deprivation and pain not to dwell on them, but to provide ways to navigate them so you will be better poised to appreciate the gifts of the early days.

The pressure on modern American mothers to “have it all” has been exhaustingly well documented elsewhere, so I will simply just suggest that you not attempt to do it all, immediately after having a baby. Get help, or if nothing else, prepare for how you will take care of yourself alongside the baby in the early days.

I hope these tips are helpful and would love to hear more from you in the comments section!

*I recognize that new parenthood takes many shapes and forms, from adoption to single motherhood to a same sex married couple to my situation. I have focused on tips for my situation (heterosexual married couple, biological parents) because it’s the only one I know and can speak to. 

Posted in baby, Occupational Therapy, parenting | Tagged , , , , | 3 Comments

Arthritis Gadgets/Approaches that Help During Pregnancy and Pregnancy Gadgets/Approaches that Help for Arthritis

Throughout the last 9 months of my pregnancy, I’ve been pleasantly surprised to note that many of the gadgets and approaches that are recommended for arthritis can also be helpful for pregnant women. Conveniently, many of the strategies and gadgets recommended for pregnant women can also help persons with arthritis! I’d like to share some of my favorite items and approaches so that others with arthritis or pregnancy can discover how to protect their bodies and perhaps be more comfortable.

Arthritis Gadgets and Approaches that also Help During Pregnancy

1)      The Reacher / Grabber

Using the reacher to pick up a cat toy!

At 9 1/2 months pregnant, I enjoy using the reacher to pick up a variety of household items, such as cat toys!

The reacher/grabber is a classic gadget that helps you avoid bending down to pick up items. As a bonus, reachers can also help you reach high up items (which I personally have found helpful when picking blackberries – the good ones are always just out of arm’s reach!).

There are 2 basic kinds of reachers: the lightweight variety, which are very easy to operate if you have hand pain but only work for light items, and heavy duty ones which can pick up items up to 8 pounds.

I have found that reachers are a great creative baby shower present for the expecting mom. Their usefulness will likely persist post-delivery, as it can be difficult to bend down if you are still healing (particularly from a Cesarean birth).

2)      Clothing Aides

Putting on and taking off clothes can be difficult with arthritis as well as pregnancy, especially in the second to third trimesters as the belly grows and bending down becomes harder! The sock aide and shoe horn (links below) are useful for lower body dressing as they minimize the extent to which you have to bend down to put on socks and shoes. The button hook is super helpful if you’re having hand swelling and/or carpal tunnel syndrome, which are common during pregnancy.

3) Supportive Shoes that are Easy to put on

These Dansko boots are very supportive but they do have zippers, which can be a little challenging as your belly grows bigger!

These Dansko boots are very supportive but they do have zippers, which can be a little challenging as your belly grows bigger!

Painful swelling of the feet is a common phenomenon during pregnancy, and those with arthritis know all too well the importance of comfortable and supportive shoes!  Many people with arthritis as well as those who are pregnant find that easy to put on shoes (such as slip ons) are super helpful, as they prevent you from having to bend down and allow you to avoid potential hand pain from finagling with laces/snaps/etc.

My favorite shoes for arthritis and pregnancy have hit the sweet spot of “support + ease of putting on and off.” Most of the shoes I recommended in my previous post on this topic work well for both arthritis and pregnancy. For pregnant women, I would recommend adding a zipper pull to boot zippers to minimize the bending needed to reach them. Alternately, I recommend sitting down and crossing one foot over the other knee in order to more easily put on boots or shoes that might be supportive but difficult to put on and off.

4)      Fatigue Management and Energy Conservation

Since fatigue is also a part of many of the autoimmune-caused arthritic diseases , persons with arthritis often learn coping strategies for fatigue such as getting adequate rest, pacing oneself and asking for help. Fatigue is also a common phenomenon during pregnancy, particularly in the first and third trimesters, so many of the same strategies that work for autoimmune-caused arthritis also apply to pregnant women.

I have learned to manage and prevent fatigue by implementing “energy conservation” strategies.  Energy conservation most simply means looking at ways to organize your environment or tasks so that you need to expend less energy to achieve the same goals. Occupational therapists tend to have great recommendations for energy conservation, and I would also recommend this great list of strategies from Arthritis Self Management.

A few energy conservation techniques I’ve implemented since becoming pregnant include:

  • I now keep the cat food on the counter rather than in a lower down cabinet - it's not as pretty, but it minimizes the amount of bending I have to do.

    I now keep the cat food on the counter rather than in a lower down cabinet to minimize bending.

    Reorganizing my kitchen so that frequently used items (such as cat food) are at arm’s level rather than super high up or low down (see photo). I also put frequently used items at arm’s level within my refrigerator and freezer.

  • Putting frequently used items on my bathroom counter rather than storing them under the sink to prevent excessive bending down (which helps with back as well as knee pain)
  • Purchasing items via Amazon.com rather than going to the store, which minimizes the amount of lifting and carrying required
  • Have your groceries divided into more bags to minimize the weight of any one individual bag
  • Using adaptive equipment (such as the reacher mentioned above)
  • Asking for help (more on that below!)
  • Planning ahead so that I minimize the amount of trips required to perform a task
  • Listening to my body and taking frequent rest breaks when needed!

Pregnancy Gadgets and Approaches that Also Help with Arthritis

1)      Clothing that is Loose, Comfortable and Easy to put on and off

“Demi Panel” pants are easy to put on and off AND comfortable…double whammy! Click here for the pants pictured above.

The maternity industry has absolutely nailed this one!  I have really enjoyed my elastic or panel waisted pants during pregnancy; not only are they more comfortable than standard pants, they are much easier to put on and off due to the lack of zippers, buttons and other tricky closures!

I see no reason why regular folks with arthritis wouldn’t benefit from/enjoy wearing the kinds of elastic waist pants that are designed for early pregnancy (the “full panel” ones designed for later pregnancy only really work for the shape of your body at that point).  The terms to search for would be “low rise maternity pants,” or “demi-panel” pants. I personally have enjoyed my Old Navy demi-panel pants as well as their fold over lounge pants.

I will say that the brands vary in terms of how much force is required to pull the pants up over the hips; I would recommend getting a panel with a little more “give” so that you don’t have to excessively grip the panel in order to pull it up, as this can cause additional strain to the hand joints.

Additionally, I’ve found that many maternity tops  are super soft, loose, comfortable, and easy to put on and off. These are also great criteria to value while shopping for arthritis-friendly tops, as the easier your clothes are to put on and off, the less strain you’ll be putting on your precious joints!

2)      Pillows and “Positioning Aides” for Comfort while Sleeping

My plethora of different sized pillows allows me to sleep comfortably...most of the time!

My plethora of different sized pillows allows me to sleep comfortably…most of the time!

One of the many pregnancy pillows available on the market.

Sleep is so crucial for maintaining overall health during pregnancy as well as while managing arthritis.  I was super excited to learn about all the different pregnancy pillows and other “positioning aides” on the market.  While I personally have been able to sleep relatively comfortably by arranging my existing pillows on my bed, many pregnant women find that the special pillows designed for pregnancy are a great investment that substantially improves their ability to sleep comfortably.

Many folks with arthritis would also benefit from these larger, full body pillows as they provide additional support that minimizes the strain on your joints. For example, the pillow pictured at top right supports the woman’s left shoulder and hip much more so than if she was sleeping on a standard pillow. This article offers additional tips for sleeping positions that help with a variety of physical ailments. If the comfort isn’t motivation enough, just consider that you spend roughly 1/3 of your life sleeping, so anything you to do protect your joints during sleep will potentially have a huge effect on your joints!

3)      Asking for Help

My husband Gabe is my #1 helper!

My husband Gabe is my #1 helper!

This is a biggie.  I have found it so much easier to ask for help during my pregnancy than I previously had on the basis of arthritis. At some point, pregnancy becomes such an obvious, public phenomenon that people will offer help before you even have a chance to ask. It’s also been easier for me to ask for help while pregnant because I see it not only as for myself, but also for the baby.

I’m not proud to admit it, but I definitely have had my impatient moments in the past where I knew I should ask for help (for example, with heavy groceries) but didn’t because I wanted to just get the task done quickly.  The added incentive to protect the child in addition to my own joints has made it much easier for me to ask for help during pregnancy, and I really hope that I can remain in the habit of asking for help post-partum.  As an occupational therapist, I know how important it is to protect my joints, but as anyone who’s worked in health promotion knows, there is often a gap between knowing what’s right/what to do and remembering to consistently enact that in the moment!

The gadgets and approaches listed above were the most salient to me during my pregnancy, but I’m sure I’ve only skimmed the surface of the overlap between helpful strategies for arthritis and pregnancy. I’d love to hear additional ideas from others in the comments section!

Posted in baby, Occupational Therapy, Rheumatoid Arthritis | Tagged , , | 2 Comments

Everything I Need to Know About Grit, Perseverance and Frustration, I learned from Soccer

Expecting our first child has led us to reflect on what has shaped our character over the years.

Expecting our first child has led us to reflect on what has shaped our character over the years.

Soccer is one of the most frustrating sports, which is why my husband and I hope our kids choose to play someday. You might wonder: why on earth would a prospective parent actively desire that their child experience frustration?  My reasoning is simple: frustration is an unavoidable part of life. By being chronically exposed to frustrating situations and learning to persevere through them, you develop grit and perseverance, which will be more beneficial long term than being sheltered from negative experiences.

Additionally, recent research suggests that grit and perseverance are more correlated to lifelong success than traditional measures such as IQ or grade point average.

Of course, all sports help children develop important life skills and require some level of perseverance and frustration tolerance.  So, why soccer over other sports or athletic endeavors? Soccer has some unique characteristics which I think make it the perfect sport for developing grit, frustration tolerance and perseverance.

1. Many times, the outcome of the game does not reflect the reality of which team is better. Lesson: Life is not fair. Result: Increased frustration tolerance.

Soccer is a 90 minute game in which the outcome is decided in mere seconds. One team could have possession of the ball for 80 minutes of the game and shoot 20 times without scoring, while the opponent could have one shot on goal which makes it in, leaving them the winners. This is in stark contrast to sports with a high frequency of scoring opportunities such as basketball, where the outcome far more often reflects which team is objectively better.

Ready to surmount some frustrating experiences on the field!

Now that my shorts can’t possibly get any higher, I’m ready to surmount some frustrating experiences on the field!

Looked at in this light, it seems one would have to be insane to put one’s heart or hopes into the outcome of a soccer match, knowing that the result can easily be random or unrelated to which team is objectively better.  However, it is precisely this relationship to randomness that makes soccer such a fine preparation for life. By providing chronic exposure to results that feel frustratingly unfair, soccer teaches the player that life outcomes are not always decided by what or who is best overall, but by specific high-impact moments.

Young children (particularly middle children such as myself) often hear the phrase “life’s not fair,” but we all know that experience is the best teacher.  There is a particular type of frustration that comes when what should happen (the better team should win) contrasts with what does happen (sometimes, the worse team wins).  In our daily lives, most of us tend to be fooled by randomness; we want to believe that outcomes are dictated by what or who is most logically deserving of success, because accepting the role of randomness in our lives is scary and makes us feel out of control.

However, our lives will inevitably present situations where what should and does happen simply don’t match, and we need to learn to persevere through these events rather than crumbling under the unfairness of it all.  Learning to accept and move past these unfair situations leads one to develop frustration tolerance, or the ability to proceed with our endeavor despite an unwelcome (and thus frustrating) outcome.

Now, let me be clear: the point isn’t that everything is random in soccer and life. The point is that soccer seems to hit that same sweet spot that life does, where the outcome usually but not always reflects who is most deserving of a win.

My husband and I both grew up playing soccer, which I think has affected our outlook on life.

My husband and I both grew up playing soccer, which I think has affected our shared sense of grit and determination.

This may be depressing to some, who prefer sports such as swimming and track and field where outcomes are clearly more objective and the “best person wins.” However, I believe that this lack of predictability is where the magic of soccer (and life) truly lies. When two teams line up at the beginning of that 90 minute match, they both know that no matter what their past record, no matter how many star players each team has, anything can happen. The team with the losing record knows that if they play their cards just right and have luck (randomness?) on their side, they can eek out a win, and the team with the winning record knows that their past performance provides no certain assurance of a win today.  Learning to dig your heels in and conceive of the possibility of a win, no matter how remote, is another crucial life skill (along with frustration tolerance) that I hope my children develop!

2) There will be forces completely out of your control (such as the referee’s decisions), and it is useless to expend energy fighting them. Lesson: control the controllable and accept the rest.

I’ve prepared a handy list of things you can and can’t control on the soccer field, and their correlates in “real life.”

  Soccer: “Real Life:”
What you can control:          Your response to the referee and their decisions Your response to your boss, DMV employees, and anyone who has concrete power over you
Your response to the other team Your response to your “enemies,” competitors, etc
Your preparation prior to the game Your own efforts to best position yourself to obtain your desired outcome
Your conduct on the field How you conduct yourself in life.
What you can’t control: Referee and their decisions Boss, DMV employee, and other people in power’s decisions*
Behavior of the other team Behavior of your “enemies” or competitors
The preparation of your teammates* The efforts of those around you to position your team/group to obtain the best outcome
Your teammates’ conduct on the field* Behavior of those you must work with in life (spouse, coworkers, etc)

*These are partial gray areas, but you get the point.

I will admit that this lesson is also learned in other team sports. However, taken in the context of section 1, I hope the reader can see that actions by those in power such as the referee have an enormous impact on the game, as every scoring opportunity has the crucial potential to directly affect the outcome (again, unlike basketball, where one foul likely will not determine the end result).

Knowing what you can and can’t control has been crucial for my mental health. Just as I learned through soccer that I will never convince a referee to rescind a call that I feel is wrong, I have learned to differentiate between when I can and cannot have an impact on my circumstances. By knowing when I cannot change an outcome, I avoid expending my precious energy on futile endeavors. Furthermore, I learned that the best response to a “bad call” was to immediately refocus my attention and energy to the reality of the moment and determine what I could do to make the situation better.

I LOVE reading now, but one of my first memories of frustration is from learning how to read. It was hard!

I LOVE reading now, but one of my first memories of frustration is from learning how to read. It was hard! Luckily, I had patient teachers such as grandma, pictured here.

An old coach once told me that that when he evaluates players during try-outs, he doesn’t look just at how many mistakes they make, he looks at their first reaction after a misstep.  When you fall, is your first reaction to wallow or hit the ground in frustration, or is it to jump back up and do whatever you can do remedy the situation?  Training yourself to dig your heels in and refocus your attention the task at hand despite an unfair or frustrating situation is a crucial element of grit and has benefits far beyond the soccer field.

To make things complicated, there are gray areas which I’ve marked with an asterisk above. For example, I may not like an institutional decision or a particular government program.  Is this controllable or not? Of course, there are times when you can exert some power to influence or change decisions that in the past have caused frustration. In soccer, one can talk with the coach and perhaps help change his or her mind as to the starting line-up, or in life one can advocate for a change in a government policy. The trick is to learn when you have some wiggle room to exert influence and when you simply don’t, and I think sports like soccer are a great vehicle for learning this distinction.

3) Soccer can help one develop intrinsic versus extrinsic motivation. Lesson: my happiness can lie not in the outcome of the game but in my evaluation of my own effort and performance. 

Basically, since the outcome of the game (in terms of who “won”) doesn’t always reflect who actually played better, the soccer player over time learns to evaluate their performance based not just on whether they won but by also on how well they played (individually and as a team).  Thus through time, the soccer player learns to be motivated not just by “wins” but also by evaluating their effort and performance.

We didn't have the best record my freshman year at Vassar but we ended up pushing through and winning our conference championship!

We didn’t have the best record my freshman year at Vassar but we ended up pushing through and winning our conference championship!

Through soccer, I learned to be satisfied at the end of a 90 minute match by reflecting on great plays that I made, regardless of whether or not my team won the match. I’ve found myself approaching other tasks in my life in a similar way. For example, I may not receive the grade I was aiming for in an exam, but I can be proud of answering a tough problem or conquering a difficult concept along the way.

On a somewhat related note, recent research in the area of self-perceived intelligence and praise has provided support for focusing on effort versus intrinsic ability. Just as kids who are praised for effort tend to exhibit more task persistence than those who are praised for innate intelligence, I believe that kids who learn to focus on evaluating their own effort during a soccer game rather than the outcome will similarly experience increased task persistence.

Interesting anecdote: I recently asked one of my students to write out their strengths and areas for improvement and to provide examples or reasons for each.  I asked the child why they listed a particular subject as a strength, and they answered “because I get the highest grades in it.” I attempted many follow-up questions to prompt them to consider why they receive better grades in this subject (is it because they work hard? Does it come easily to them? Do they persist when things get difficult?) but they were unable to correlate their performance with any action they had taken. They were only able to evaluate their strength based on external ratings (grades).

We may have lost the game, but I trapped that ball with style! :P

We may have lost the game, but I trapped that ball with style! :P

I know that children go through a cognitive evolution from thinking very concretely to being able to think more abstractly/flexibly, which might explain this child’s lack of insight at the moment. However, my hunch is that sports such as soccer help kids develop a more nuanced ability to evaluate their performance by forcing them to separate effort from outcomes. The soccer player knows in their heart when they had a win that they didn’t deserve, versus one they truly earned. They learn that the win-loss record doesn’t tell the whole story, which I think is a very useful skill for mental health and insight later on.

Conclusion

Many factors influence whether one will develop grit, perseverance and frustration tolerance over the course of one’s life, and soccer of course is just one of many possible vehicles for developing these vital life skills.

Getting ready for baby!

Getting ready for baby!

As I’ve prepared for our baby to come over the last 7 1/2 months, I’ve read countless parenting books and memoirs.  Pamela Druckerman’s “Bringing up Bebe” emerged quickly as one of my favorites.  In exploring the difference between French and American parenting styles, Druckerman explains: “French parents don’t worry that they’re going to damage their kids by frustrating them. To the contrary, they think their kids will be damaged if they can’t cope with frustration. They also treat coping with frustration as a core life skill. Their kids simply have to learn it. The parents would be remiss if they didn’t teach it.”

I know it will be unintuitive for me to allow our child to be frustrated when I might have a solution, but I hope I can remember my experiences with soccer and hold back so that our child learns to persevere despite inevitable frustrating setbacks.

I’d love to hear from readers about what life experiences have helped shape their ability to persevere through frustration and develop grit – let me know in the comments section!

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10 Years with Rheumatoid Arthritis: What’s the Impact?

Belize 2005

Volunteering in Belize 2 years post-diagnosis (2005).

China 2013

Great Wall of China, 2013 (10 years post-diagnosis).

I recently realized that I have lived with rheumatoid arthritis (RA) for ten years, or roughly a third of my life!  In that time I’ve graduated college, travelled to 12 different countries, lived in 3 states and travelled to/through over 15,  started swing dancing, got 2 kittens, earned a Masters degree in occupational therapy, got married, bought a house, and more.

In honor of my diagnosis anniversary, I’d like to share how RA has (and hasn’t) affected my life over the last 10 years.

Understandably, most people assume that joint inflammation and/or pain has the biggest impact on the life of someone with RA. However, if I really look at how my life has changed due to my diagnosis, the impact extends far beyond the physical. Using the Occupational Therapy Practice Framework as a general guide, I’ve created a handy pie chart which shows the 7 areas of my life that have been most affected by RA. I will explore each in detail below, starting with the top right.

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1)      Physical Effects of RA:

For those who don’t know, RA is an autoimmune disease. In RA, your immune system mistakenly attacks the lining of your joints, which has a cascade of effects beyond joint inflammation (“arthritis”), pain and degradation. Although arthritis is in the name because joint inflammation is a main effect, RA is in fact more similar to lupus than osteoarthritis, which is caused by joint cartilage breakdown over time. RA has “systemic” effects on other organs, such as the heart, lungs, and vascular system (explored in detail at the link above and here).

2 Good Day

On good days, I feel like THIS!

So, what has that meant in my life? Well, my levels pain, inflammation and fatigue have varied vastly over the last 10 years. I’ve had years at a time with absolutely no symptoms (“medicated remission”), but I’ve also had a couple of “flare-ups,” where pain and inflammation have increased to the point that I have to change my medication regimen and how I approach tasks.

On a bad day, my foot feels like this.

On a bad day, my foot feels like this.

On the average day, I feel a dull ache in my “distal” joints (farthest away from the core – think fingers and toes, not shoulders and hips) which is slightly worse in the morningand at night. I intermittently have cricoarytenoid arthritis, or inflammation of a small joint in the throat, which results in dyspnea. Dyspnea means difficulty breathing or an “unpleasant awareness of the work of breathing.” Overall, I have been very fortunate to respond well to my medication regimen, which has kept my inflammation at bay.

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I wear glasses to minimize eye inflammation.

Despite my mild level of daily joint inflammation, I do experience some  systemic effects of RA, including chronic eye inflammation, gum inflammation (leading to hefty dental bills), non-iron responsive anemia, occasional fatigue, and some gastrointestinal symptoms that may or may not be related to RA depending on whom you ask. The gastrointestinal issues have led me to adopt a nightshade and gluten free diet.

I also experience medication side effects, including increased risk of infection (which means I must be very careful to wash my hands and practice other “infection control” measures), digestive issues, and fatigue.

In summary: while I’m very lucky to respond well to medication, my life has been affected by the direct and systemic effects of this disease and medication side effects. The hardest aspect for me is not managing my physical symptoms but rather the unknown. If I’m currently in mild pain, next week will I have a huge flare-up, or will I be in medicated remission for the next 10 years? No one can answer that, which makes life planning difficult. Then again, we all ultimately don’t possess answers regarding our physical future…but more on that later.

2)      Daily Routine: The Why, and the How.

My physicians prefer my RA be controlled 100% through medication, which would allow me to live a completely “normal” life without making any modifications. However, as an occupational therapist I prefer to tweak my daily activities so as to minimize stress on my joints.

The way I see it, my joint inflammation at any given moment is partly a result of my immune system attacking my joints, and partly a result of the additional stress I put on them as I engage in daily activities.  Medication addresses the former cause of inflammation, but not the latter.  I can control the way I approach daily activities, so I owe it to myself and my long term joint health to do so! Joint protection has become a part of my daily routine at almost a subconscious level. Here are just a few of the ways I approach activities differently to prevent further joint damage:

CherylGabe

I love boots for comfort and ease of putting them on/off. Photo credit: http://www.rishisanyalphotography.com/

Dressing: I take my RA into account when selecting clothing. Typically I avoid shirts with lots of tiny buttons, as they involve lots of repetitive motions of the small hand joints.  I also am extremely selective with my footwear, with the dual goals of minimizing stress on my foot joints and making the shoes easy to put on and take off (see my previous post on RA-friendly shoes, where you will discover my obsession with Danskos!).

iphone pics june2013 002

Stovetop cookies…these are actually less efficient than baking cookies in the oven, but this is the best “kitchen action shot” I could find :-)

Cooking:  A few simple kitchen modifications I’ve employed include: using an electric can opener rather than manual, using a smaller Brita water pitcher rather than a larger/heavier one, purchasing very good/sharp knives to miminize the amount of force I must use to cut things, using an electronic food processor and kitchen aid rather than manually stirring food,  using “mass movements” (shoulder/elbow/trunk) to open items rather than relying on the small hand/wrist joints whenever possible, and asking for help with lifting large/heavy items. When I am lifting any object in the kitchen, I follow the basic rules of joint protection.

       Computer/phone useI take frequent stretch breaks at the computer, and I always use a mouse rather than a trackpad because mousing puts less stress on my MCP joints (knuckles) than using the trackpad (and the MCP joints tend to be most affected long term by RA). I’ve also started using talk-to-text programs when I’m not in public, such as Siri. I find it’s much easier to dictate a short message this way, plus it’s way faster than trying to finagle with the small keyboard on the iPhone!   

3)      Financial and Health Management Adventures with RA

Health management and financial costs affect everyone with chronic illness, regardless of whether one is experiencing symptoms at the moment.  I’m sharing these costs (financial and time burdens) not to complain, but just to paint a realistic picture of what managing this disease entails.  RA appears to cost me 26.8 to 74 hours of time per year, and $2800-$8000 per year depending on my insurance (note: the financial costs are just what I directly pay; my insurance company is paying over $20,000 a year for Enbrel or Remicaide alone).

time money costs chart2

4)      Social & Emotional Effects of RA:

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My wedding!

As marriage became more of a real prospect in my mid to late 20s, I found that anyone entering into a romantic relationship with me would consider the potential lifelong effects of the disease.  My impression is that the disease itself was seen as a negative, but the way I managed it was seen as a positive.  I also think I self-selected partners who shared my view, which is that you never know what physical or mental condition someone might develop when you make that lifelong commitment. We all know that we could be hit by a car tomorrow and our whole lives could change, so putting extra stock in the physical when making romantic relationship decisions is unwise.  That being said, I think that when you enter into marriage after having experienced health issues, the phrase, “In sickness and in health” certainly carries more weight. In fact, the only time I became tearful during my wedding ceremony was when saying those words!

Regarding family and friend relationships, I’ve had wonderful support from both groups. The only small point of friction has been when I have felt peer pressured to stay up late, over-exert myself and not give my body the rest it needs. My peer group largely has subscribed to the “I’ll sleep when I’m dead” approach, which simply doesn’t work for me (or most people with an autoimmune disease). My body starts shutting down when I get less than 8 hours consistently a night. I’ve learned to be assertive with this, and deal with “FOMO,” or “Fear Of Missing Out.”

CIMG2702

KAT-FISH camp for kids with arthritis, 2010 (I selected a photo w/o kids’ faces to protect their privacy).

On the positive side, RA has paved the way for me to make some additional friendships and relationships.  I’ve met other patients through the Arthritis Foundation, at the summer camp in the northwest as well as other volunteer and advocacy adventures. I’ve also met some amazing folks through social media and blogs, such as RA Chicks, RA Warrior, Creaky Joints, and RA Guy.  Lastly, I’ve recently made connections through Tumblr with some inspirational people through Arthritis Humor.

Emotionally, the hardest times for me have been when I’ve had unexplained symptoms. This happened the full 2 years before I got diagnosed and has reoccurred a few times since then. As someone who prides herself at the ability to get to the heart of the matter, I’ve found it frustrating when I can’t figure out what is causing a particular symptom and how/when it will go away. I also have felt anxiety about the future, due to not knowing how RA will affect important life roles that I hope to have such as being a mother someday. Will I, like some women with RA, go into complete remission during pregnancy but then have a huge flare-up after giving birth and barely be able to hold my own baby? Or will I go into lifelong remission after having a child, like my great aunt did?

The unknown for me is probably the very hardest aspect of this disease. If I knew that I’d have X effect for life, I could habituate my mind and approach to it, but unlike a situation such as a complete spinal cord injury where the prognosis is pretty clear cut, autoimmune diseases have varying courses for each individual. The upside is that I have the potential to feel great in the future, but the downside is that I will always have to handle the unknown and lack of clarity on what is happening in my body.

5)      School & Career w/RA: 

I always enjoyed working with kids!

I always enjoyed working with kids! Pictured here is my sweet nephew Sammy.

During the first 6 years of my diagnosis I explored some truly amazing careers, including: working in a private school for children with severe developmental disabilities, program development at an international photography and youth storytelling nonprofit, and organizational development and training at a top 10 academic medical center in Seattle.

During that time, I did a ton of soul searching about what career would be the best fit for me long term, and RA did play a role in my decision making. I decided I wanted a career where my primary purpose was directly helping people (individually or in small groups). The career had to be flexible enough that I could work in a variety of settings, regardless of my potential joint inflammation.

OT

OT annual conference – meeting up with another OT with RA!

Occupational therapy emerged as the perfect fit due to the large scope of practice and variety of practice settings. It also has a lot of part time work availability, which appealed to me as I’m hoping to work part time when I have kids. Additionally, OT is an intrinsically optimistic profession. We will rehabilitate or compensate for any physical or mental condition so that our clients can “life life to it’s fullest.”  OTs want to maximize the amount of function one can achieve despite any illness or injury, and that philosophy appealed to me as it’s very inclusive of a diagnosis such as RA.

As an OT student, I did experience some occasional pain from handwriting. However, my vast experience with the health system and my own journey as a patient generally have a positive effect on my school and career.

One positive effect of my diagnosis on my career is that I can empathize with my clients’ interest in knowing “the answers,” and their frustration when they eventually discover that no one knows them.  People can tell you what is most likely to happen, but no one in the health or education system is a fortune-teller. I really identify with my clients’ (or family’s) frustrations over how difficult it is to make decisions off of what sometimes feels like incomplete information. Once you understand how complex the human body is, it seems self-evident that no one can give you the answers, but I vividly remember my experience of the healthcare system before I became a provider, and the profound disappointment I felt when I was confronted with this reality. I try to really acknowledge this aspect of my clients’ experiences and validate their concerns.

6)      Hobbies & Travel with RA:

My choice of hobbies has certainly been affected by my diagnosis.  I used to run almost every day, starting in high school through to a couple years after my diagnosis, but eventually decided to try forms of exercise that would be less strenuous on my joints: swing dancing!

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Swing dancing with my first partner, Brian Gish!

In my video “Why I Dance,” I shared how dancing grew into a huge part of my social life.  I have to be careful about certain moves which cause strain on my small hand joints, but overall I’m fortunate to be able to take part in this wonderful community despite RA.

Swing dancing is a great example of how RA took something away from me, but I discovered something equally meaningful in its place. Do I miss running and soccer? Absolutely, especially on clear, beautiful Seattle days. On a purely physical basis, I prefer the endorphin release of soccer or running to swing. However, when I look at the whole package of the activity (with the social and musical elements), the trade-off is without a doubt worth it.

Now, onto travel. Yes, I have been to 14 countries since my diagnosis: Belize, Fiji, New Zealand, Japan, China, India, Turkey, Czech Republic, Germany, Belgium, Netherlands, Ireland, England, and Canada. Phew!

5

Mom delivering my Enbrel in San Ignacio, Belize!

The biggest effects of RA on my travelling are the prescription and health management aspects. My first international trip post-diagnosis was to Belize, where I volunteered for a great organization called Cornerstone Foundation. I was only planning on staying for 3 weeks but I ended up staying 3 months, which meant that I needed additional medicine. I was on Enbrel at the time, a twice-weekly self-injection medicine which MUST stay refrigerated. My mom graciously helped me research how to ship it, but found out that it is illegal to ship things on dry ice to Belize due to drug concerns. So, guess what our solution was? My mom took advantage of low ticket prices and decided to bring the medication to me – now, that’s what I call customer service!

The drama wasn’t over at that point, however – during my last 2 weeks in Belize, there was a strike by the electrical supplier to the entire region, so we had no electricity to run the refrigerator! Luckily I was able to keep my medication cold, but it just goes to show some of the difficulty of travelling with RA.

new zealand

New Zealand for our honeymoon, 2012.

During my other travels, I sometimes had to simply skip a week or two of medication. I was lucky not to experience any adverse affects with this approach. I also had to get “vacation authorization” to pre-fill extra amounts of my medications for longer trips.

Since I switched to Remicaide, the infusion-based medication which is administered every 6-8 weeks, the biggest travel concern has been coordinating my travel dates so that they do not conflict with  my medication schedule. For example, I had to get an infusion the week before my wedding so that I would be covered through the honeymoon.  This has also affected my current travels to China, as my husband is there on an extended business trip.  Luckily, my infusion schedule overlapped with a few weddings I wanted to return home for anyway!  I think that spending extended time abroad would be anxiety-provoking to me, from a medical standpoint, because I have found that errors or confusion are more likely each time you introduce a new provider to the mix. However, short trips for me have been manageable with some work upfront.

7) Philosophical Effects of RA: The Biggie.

cher_soccer_mihs_1997

1997, Mercer Island High School. I’m trying to save the ball from going out of bounds.

For years, I believed that if I treated my body as a temple, I would reap the rewards of my efforts. I ate well, avoided recreational drugs, exercised vigorously daily, and as a result had a body that operated smoothly and efficiently. I ran a 5:30 mile, weight lifted 5x/week, and never subbed out of my high school or college soccer games (clocking in 90 mins/game).

Experiencing my body break down in the absence of anything I was willfully doing felt like a double betrayal: it was a betrayal of myself BY myself (there wasn’t even an outside virus to blame!), and it was a betrayal of a philosophical system I didn’t know I had, which is that I can protect my body from harm by doing “the right things.”

I know now that my years of good health were partly a result of my actions, but also a result of good luck.  My baseline state of good health enabled me to maximize my fitness and do great things, but I wasn’t in control of that original baseline state. In my gut, I suppose I knew that I was lucky to be in good health; I had seen other athletes fall victim to injuries and seen friends/family fall ill to various diseases through no fault of their own.  There is a transition period, however, between knowing your body is not invincible and accepting it.

IMG_1033

The world is big and awesome and the only thing I know is that I’m going to die, so I might as well do as much good as I can while I’m here! Whee!

So, what or who is to blame when the body betrays the body? In my own belief system, there was is no god or greater power or force to blame or help make sense of it. There isn’t a “reason” or meaning to my diagnosis; it just is. All humans are mortal, and all human bodies are subject to disease and illness. There are certainly preventative measures we can take to minimize risk, but there are no surefire ways to prevent yourself from all possible illnesses and injuries.

My diagnosis led me to confront the infallibility of my own body, which in turn made me confront my own mortality. The realization that “my physical body is not completely under my control” naturally led to “my physical body will eventually not work anymore.”  Accepting my mortality has been crucial for giving me a strengthened sense of purpose and urgent desire to make a meaningful life. The graph below outlines the interplay of these factors.

philosophy chart 2

How various factors (including RA) lead to recognition of my mortality, which lends a sense of urgency to my life.

The fact that I am going to die someday gives immediate perspective to any situation. My “bible” of sorts is a combination of “Man’s Search for Meaning” and “Tuesdays with Morrie.”  Both of these books deal with the concept of death straight on, and while Morrie is religious, the basic truths he utters are equally applicable to agnostics and atheists.

“Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die, it’s the positive that you understand you’re going to die, and that you live a better life because of it.” -Morrie Schwartz, in Mitch Albom’s “Tuesdays with Morrie.”

Working with Tibetan refugee children in northern India.

Working with Tibetan refugee children in northern India at “TCV: Tibetan Children’s Village,” 2007.

Confronting my mortality and the mortality of all humans has been the compass around which I live my life and make decisions. It’s the only thing I know for sure. I am alive now, I will die someday, and I desperately want to leave something positive for the world behind, to make my life worthwhile. There is no inherent meaning to my life, the only meaning comes from the good (or bad) actions I choose to take during my limited time on earth.

Sure, I knew I was going to die on some abstract level before I got diagnosed with RA. But there is something about a stark, black and white diagnosis that  makes the abstract concept of mortality more real.  This is perhaps the greatest gift that has arisen out of my diagnosis.

Conclusion

In conclusion: the effects of RA have extended far, far beyond the physical in my life. My diagnosis affects everything from micro-elements of my life (such as how I approach simple daily living tasks in the kitchen) to macro-elements (such as my sense of purpose and acceptance of my mortality).  I hope that this exploration has helped the reader see RA as much more than simply autoimmune-caused “joint inflammation!” I’d love to see charts of other peoples’ top life effects of RA – feel free to share your experiences in the comments section.

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Arthritis Humor and the Therapeutic Powers of Laughter and Social Media

Last week I started a GIF and photo-based Tumblr blog called “Arthritis Humor.  My goal for this blog is to help patients with autoimmune arthritis (and other chronic illnesses) transcend their experiences via humor, and feel less alone by connecting to others through shared laughter.

What’s so funny about arthritis, you ask?  Well, as a healthcare professional and patient, I will concede that there is nothing intrinsically funny about either category of arthritis: osteoarthritis (“wear and tear” arthritis, the kind associated with aging) or  autoimmune arthritis forms such as rheumatoid arthritis (whereby one’s own immune system mistakenly attacks the lining of one’s joints and other body systems as well).

However, as a patient with rheumatoid arthritis (RA), I believe that finding humor in some of my RA-related experiences brings a sense of power over the disease. Furthermore, sharing humorous elements allows me to feel less alone in my journey, as I connect with other patients and see that they have had similar experiences.

I received the following reaction from a friend with rheumatoid arthritis, which highlights these two benefits: “I started laughing, which I find is important to do, but hard at times when you live with a disease that isn’t so funny. It put a smile on my face for sure. There is a lot to be said for knowing someone who just gets it.”

Finding humor isn’t easy when battling a systemic illness. Most peoples’ reactions to pain and the idea of their immune systems attacking them run along the lines of fear, sadness, grief, and even disgust.  I’ve been there myself, make no mistake of it.  For some patients with autoimmune arthritis, the physical pain is so searing and debilitating that it is hard to focus on anything else.

How powerful, then, is a smile or a laugh in the face of those low moments? What great strength there is in moments of transcendence,  moments where we say, “You may have my joints, but you don’t have my attitude, you don’t have my outlook on the situation, not today?”  In that sense, a smile or a laugh becomes more than something light, free and easy; it gains weight, it becomes something substantial, a force to be reckoned with.

Finding humor makes you the victor.

Victor Frankl’s stance on humor during difficult times is particularly relevant here, as he describes the role of humor during his experiences in Nazi concentration camps: “Humor was another of the soul’s weapons in the fight for self-preservation. It is well known that humor, more than anything else in the human make-up, can afford an aloofness and an ability to rise above any situation, even if only for a few seconds.”  Man’s Search for Meaning

It turns out that many researchers have taken a formal look at the healing nature of laughter and humor.  While attending the American Occupational Therapy Association’s annual conference, I discovered The Association for Applied and Therapeutic Humor (see poster below).  Additionally, many  research articles explore and detail the clinical or scientific effects of humor in a healthcare interactions.

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Therapeutic humor poster at 2013 AOTA conference.

While most research focus on the effects of humor on the individual (to release endorphins, for example), or between two individuals in “real time” (such as during a therapy session), I’m interested in how digital and social media enable people to connect through shared humor (and beyond) over vast geographic distances.

Social participation can be so easily limited when one has a chronic illness, yet social media enables people to form substantial connections with very limited energy expenditure.  Through my Tumblr blog, I’ve discovered countless other patients who bond with others through sharing their daily struggles and triumphs over chronic illness. I’m interested in more formally considering the many advantages and drawbacks of patients connecting through social media (from humor and beyond), and I hope to put a poster session together for next year’s national conference.

Do you know of any other ways in which people use humor to transcend illness, or use social media to connect about health issues? Let me know in the comments section!

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