all posts, eczema

why does my skin getting wet itch so badly?

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

I’ve been reflecting on the various triggers to my eczema during this neverending but constantly changing topical steroid withdrawal and at 2am this morning I came to a realization. My skin tends to itch like crazy when I’m exposed to something wet in short bursts. This includes actions  like washing my hands, dipping my feet in a tub to test the temperature, applying lotions to dry skin, etc.

This realization made me backtrack and first want to know what is the stimuli the body responds to when it’s wetted. We have receptors for temperature (thermoreceptors) and chemicals (chemoreceptors), and even some for painful exposure broadly (nociceptors). We also have cutaneous receptors that can detect pressure, touch, stretch, and vibrations, but still none of those seemed intuitive for how wetness would be recognized. Obviously it’s got a temperature component but that wouldn’t work alone. I did a quick google search and came across this article, which explained that wetness is registered a mix of cold temperature, pressure, and texture reception in tandem with learned experiences to create what was called “perceptual illusion”. Note, I have cited a secondary source above, not the primary study. The study itself I couldn’t access fully, but it is here.

I thought about the information I read and concluded that it didn’t help to explain why my eczema-afflicted skin reacts so aggressively to short duration bursts of wetness. Perhaps it has something to do with the over-sensitization nature of eczema. Maybe if the A-nerve afferents are just more reactive in general, inconsistent exposure (like multiple drops of water hitting my skin) would cause the A-nerve afferents to send tactile/temperature information repeatedly. Then as the over-sensitization makes me register many sensations as an itch, it would just create more itching. Maybe?

all posts, mental health

on acceptance and chronic illness

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂 This entry was written in April 2019.

It has been 6 years (more or less) that I have been dealing with what seems like severe skin issues. When this all started in 2013, no one knew what was happening to me, and various assumptions were made. My mom strongly believed the cause to be that the off-campus housing I was living in was too dirty. My dermatologists thought it was from improper skin care. My doctor thought it was from a staph infection. My specialist thought my symptoms had a hormonal component and the likely cause was my birth control pills or the pituitary adenoma they found on an MRI of my brain. I thought it was from topical steroid usage.

But whatever the cause, the medical treatment has been about the same no matter who I saw (and see). I’m advised to moisturize more with different moisturizers and then prescribed rounds of antibiotics and prescription on prescription of topical steroids (and often oral steroids too if I’m looking particularly bad). The result has also been the same- some clearing up of the skin, followed by a precipitous dive into new flares as I taper off the steroids. It’s almost like my skin is addicted to steroids. What I mean by that is that because I have been applying exogenous (not made from my body) steroids for so long, my skin has adapted. So when I stop using the steroids (or at this point, when I start decreasing the amount as recommended) my skin, having slowed its natural cortisol production in response, suddenly can’t remember how to make enough cortisol. As the blood all rushes back to the skin, with it comes all the inflammation that the topical steroids had kept at bay. (Oh and as an aside, the reason people can’t stay on topical steroids forever is because it thins out your skin over time and can also make you very sensitive to sunlight).

With addictions generally, I’ve heard you can take one of two approaches: drop it cold turkey or reduce it measurably over time. Both types of approaches have been attempted with my skin. The research behind tapering when your skin is already addicted has been changing a lot and so every doctor has a slightly different plan about how to do it. Unfortunately, every plan results with me having worser flares from the moment I start the taper. It is for that reason that I usually opt for the cold turkey approach.

The problem with cold turkey is that I haven’t lasted more than 2 years. At some point I’ll eventually give in and go to a new dermatologist and they will scare me into using steroids and antibiotics again. One told me my organs were also inflamed because my skin was (this was said off-handedly when I mentioned my fear of topical steroid withdrawal. No tests were done to confirm such a statement). Another said my choices were steroids or cyclosporine (an immune-suppressant given to patients getting organ transplants so their bodies don’t reject the new organ. To be on them requires kidney function monitoring, and your ability to fight off things like the common cold is reduced). Another said that skin regenerates by every 3 weeks so there was no way my skin would still have issues with tapering off. And yet another said I should just use topical steroids as needed just on my rougher spots, but then gave no general instructions about how long “as needed” is, if the skin keeps flaring.

This isn’t a blame game towards dermatology (anymore: that was an older stage of grieving). At this point I am more interested in the cultural acceptance for myself and by others of this state of being chronically ill. I’ll be honest, it’s incredibly difficult to do for myself. I constantly think about how life will be if and when I heal, what things I’ll be able to pick back up, what things I’ll be able to try. But deep down I have to accept I might not heal. Lately, I’ve been banking on biologics (Dupixent) to save the day and I just keep being like “okay I’m breastfeeding now but once we’re done, so long as I dont plan to have another child, I can go on these groundbreaking but experimental drugs.” I have to think about life decisions in that way because no one knows the effects of these medications on fertility or pregnancy, and if I use them I am not willing to take the risk. Harder still is that their efficacy isn’t even guaranteed!

As a result, I’m always forced to think ahead. So much of my experience as a first time mother has already been influenced by my condition. It’s not just dry skin. My body reacts like it’s allergic to everything, even to holding my baby’s head on my bare arms when breastfeeding. I always wear loose flannel over myself to not have that skin contact. I can’t give my baby baths as easily because my hands freak out from that kind of water exposure (washing my hands in general makes my hands itch like crazy and sometimes break into hives). I can’t do crazy sweat-inducing heat-generating workouts as easily without needing breaks to let my skin cool and dry off so I don’t scratch myself to death. This also means carrying my baby strapped to my body on a warm day eventually makes my stomach flare up. I am becoming increasing sensitive to new allergens, like developing allergies even to my childhood dog and a lot of my friends’ houses.

This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a neverending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.

And then all the while that I’m slowly learning to accept my own condition as a state of being, I have to figure out how to validate myself to the world. The most common attitude I receive from others is that I am just negligent in using moisturizers, which results in a lot of product recommendations from coconut oil to castor oil, Eucerin to Aquaphor. The challenge is getting people to realize that it’s not just a dry skin issue. I often have sporadic allergic reactions to products (no matter how natural) because it’s an autoimmune issue. Over the past few months I have reacted to coconut oil, and then vaseline, and then vitamin E oil. Now all three are fine to use.

This condition also impacts what I can eat. I once had a date (the fruit), and immediately broke out hives all over my lips. This happens with foods I previously could and will again be able to eat. The reason is because my issue is internal. The skin is just an unfortunate symptom. And yes sure, if I can consistently figure out how to keep my skin closed (no weeping or open wounds) maybe my other symptoms will slow, but my skin didn’t flare up one day in 2013 in a vacuum; something else triggered it.

The next challenge I face is convincing people that this is more than skin deep. I have had people tell me that eczema (the blanket term for having rashes like mine anywhere on your body) is not an autoimmune disorder. One, it definitely is, and two, when you get to my severity level (aka chronic and where the whole body is affected) you have to recognize something else is at play. My eosinophil levels (a type of white blood cell) are often off the charts. I’m talking 6000 units when normal is 60. And again my inner mouth and throat aren’t affected by eczema yet they break out in hives fairly randomly. My digestion also can get messed up at a drop of a hat and I often know I’m in a healing phase when I have bowel movements again. Not to mention joint swelling and swollen lymph nodes even in regions of my body where the skin is intact. My body’s immune system is definitely overactive.

The next issue comes from dermatologists. I honestly don’t know why I keep expecting a different plan of care, as their profession literally meaning the study of skin, but I’m always bummed when they come at me from the approach of only how to fix my skin. Like I said, the problem is my skin isn’t the cause. So if they just give me meds for my skin, I finish the medications and the symptoms return because the cause hasn’t been found and treated.

All this is to say that finding a way to accept my life as it has become, and getting others to realize what it’s like has been difficult. I’m naturally a very anxious person, and the rapid onset of this condition followed by years of being a “medical mystery” and now basically a non-compliant patient (at least towards any derm that recommends steroids yet again without having new scientific evidence proving efficacy in case studies similar to mine) have made me quite wary. I don’t have good faith that people will understand what it’s like or why I am constantly reinventing my future. Why I constantly change my diet. Why I adopt these “hippie” approaches to skin care like refusing topical steroids or going moisturizer-free during wet flares. I’m not trying to be difficult or ignore medical advice. I’m working to figure out this body I’m in as it is, and treating it gently as I re-meet it and get to know it, accepting that yes, I may now always be chronically ill even though I still remember a time when that wasn’t the case. And yeah maybe there will be a cure and/or I will heal one day, but until that time I have to meet myself where I’m at now.

all posts, miscellaneous

blue light filter

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

 

I am a romantic of old:

I dream with eyes open,

I remember life by specific scents and vivacious colors.

But straddling the line of before and after, of life pre and post infinite connection,

I find myself falling more towards the latter side, the untethered,

and further away from the screen-lite kind of life.

I have forgotten how to thrive in the recesses of my own mind,

with no eye to the audience,

pure expression, without the likes and follows.

And yet, I am not and have never been, by any means a purist.

Though I long for past eras, of strong communities, non-virtual,

I love (or am addicted to) the appeal of the always available.

There is always more to learn,

experiences to witness that I didn’t know of

and life to try.

Though, do I want to?

Is it that I now desire the domestic,

or that I long for stable roots from which to grow?

Is the constant creeping cloud of worry due to not knowing how to say “my experiences are enough”?

From wanting, when sharing occurs, for it to be from others via their own lips,

or some other slower, less show-y manner?

Can I not just miss out on what I don’t know,

the fear of regret assuaged by the realization that what makes for a good life,

is still yet the most subjective of all?

So perhaps if I just follow my ephemeral heart and gut,

they won’t lead me astray.

all posts, mental health

anxiety

grayscale photo of woman covering her mouth using her hands
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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

 

The anxiety has a name

It is change

It is decisions

It is mortality

It is priorities

It is choice

But what if we chose wrongly?

Will we know?

Will we feel it deep in our souls?

Anxiety is not just unknown

It’s the future

Not the abstract

But the knowledge that we will butterfly ourselves to this place

And it will be final

But with finality will we find happiness in our choices?

Or bitterness of regret?

How can we know until we do it?

all posts, parentings/things about baby and kids

the baby and the necklace

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

There are so many clichés to explain how fast babies seem to grow up. I don’t love them because they feel overly desirous for a past self of a child when the current version can be equally if not more exciting to witness, but I do understand where they are coming from.

It’s true that babies do change in frequent, inconsistent bursts. For example, my non-sleeping baby is becoming a multiple-a-day napping toddler. She also is becoming what I can only describe as delightfully aware and intuitive.

Today, I nostalgically decided to wear a necklace my husband got me at the Massachusetts Renaissance Faire. It in itself is full of memories of change: the MA Renn Faire was the first one I’d gone to in years, with a partner, as an adult, and in New England, so wearing it today was a happy fluke.

My baby was particularly intrigued by it, but unlike her behavior everyday  previous, this time she neither tugged the necklace around my neck too hard, nor tried to eat the pendant.

So I did what any curious mama might do, and started to unclasp it from around my neck. The baby watched with her big curious attentive eyes. Then I began to clasp it behind her neck while she faced me, and I got to witness a delightful smile break across her face as she (I am assuming) realized what this transaction was.

After the necklace was placed and the pendant lay somewhere between her sternum and her belly button, she happily looked down and gently took the pendant in her baby paws again and again. But yet at no point did she pull it or try to eat it. Instead she just continued to savor its presence, and repeatedly looked down on it in between breastfeeding.

Then later after forgetting it was on her, she was playing with other toys when she re-noticed it as it gently hit against her shirt while maneuvering through her world.

Now maybe this isn’t so crazy of a tale for an outsider, but this same baby picks bits of dust or crumbs off the floor and shoves them in her mouth. She has been known to pull my hair and then suddenly gives an aggressive tug to a few strands, and I’ll feel the sharp snap as hairs get pulled out.

So how is it that this same little being, who has maybe seen me wear a necklace once before over 3 months ago, could change her behavior so drastically in receiving a new object (of course it is forever hers now).

The magic of change, though frightening, never fails to delight me with this little one.

all posts, community, miscellaneous, nature/the environment

the man who tamed the birds

white birds perched in front of lamppost
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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

There are moments when we see something amazing, something that is out of the ordinary or just generally impressive. In these moments, it’s often the case that what we are seeing is Time.

As a new mom, with the privilege of choice to stay at home (which in itself is a misnomer of a phrase because the babe and I often venture out of the home ), I have an unprecedented view of Time. That isn’t to say that I have more time than anyone else, but that I am in a unique position to view it.

Often I must wait it out with Time as my babe sleeps. Time waits for no man, or so they say, but it does cozy down with a parent waiting on a sleeping child. Time and I, we sit and drink tea, and read books, and very often daydream in the quiet stolen moments of when the baby slumbers.

When the baby is awake we sometimes accompany Time on his off moments, the pockets of space where others are ensconced in their own busyness, to head out as a mother-daughter dyad and explore the world. We meander along aimlessly, especially if the weather is fair.

On one such occasion, walking down what I consider a confused highway (Mass Ave), the baby and I encountered Time as he followed along beside an older Asian man. This man caught my eye as I walked by because he too, clearly had noticed Time and abruptly but unalarmingly, stopped not too long after passing me and the baby by.

But what really kept my attention were the birds. They, these pigeons of the city, noticed the man’s approach and quickly behaved like their feral-er cousins and flocked, in rolling bumbling waves, towards the man until they were crowded opposite to him, separated by the chains of an open air lot.

The man, clearly practiced, produced a black pouch from his person, opened it deftly, and began methodically tossing measured handfuls of some sort of seeds to the bird crowd. The pigeons continued their rolling bumble over one another as they entropically scattered to maximize their collection rates.

All through this, I had slowed down myself, intrigued by this fellow Time companion, and smiled as I thought about how after this gentleman must have routinely stopped with Time to have these birds now recognize his approach in earnest.

If you ask me, I can generically say where I was (though I never know what road it was save for off Mass Ave, but I have no recollection of the hour or day. I have seen him once again since that first encounter. This second sighting, in which I paused my husband to witness as well, all I can recall are he man and his black pouch full of seeds. Other than that, Time has rubbed away any other specifics from my mind, because indeed those specifics don’t matter.

all posts, eczema, parentings/things about baby and kids, women's health

on breastfeeding, breastmilk, and NPR

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂

A while back I took a class on breastfeeding at the hospital where I planned to deliver (North Shore Medical Center Salem Hospital). Below I’ve outlined some of the notes I took as they pertain to women’s health, as well as my own thoughts.

As many people are saying, “breast is best”, it’s interesting to look into why. Studies have shown breast feeding can help women lose some of the pregnancy weight faster as you are expelling energy to produce milk. It can also help reduce your risks of ovarian cancer, breast cancer, heart disease, and type 2 diabetes, as well as it releases hormones to calm you down.

But what’s actually going on in the body when it produces milk? The glands that produce milk (alveoli) send the milk to ducts which lead to the nipple opening. The baby draws the milk out when sucking, and the more the baby drinks, the more our breasts produce. At first we only produce colostrum, which is this fatty liquid that has all kinds of goodies like antibodies and beta carotene for our babies newly-developing immune system and gut. Then the real milk comes in after about 3-5 days. When a baby started nursing each time, first (s)he will get the foremilk which is mostly composed of water, and after feeding for a few minutes (up to 10 minutes) the hindmilk (which is a lot fattier) follows. The Letdown Reflex happens each time the baby feeds and it is when the baby has latched and the breasts transition from letting out foremilk to hindmilk. Some women can feel the letdown reflex happening (described as pins and needles or some localized tightness) but many women feel nothing.

But how does breastfeeding feel? Well, apparently it is a very novel sensation to most when the baby first latches (it definitely was in my experience) and for many it is difficult to get a good latch and takes some practice! The biggest worry is that a baby who has latched poorly and is just hooked onto your nipple and so (s)he will cause the mom pain. The way to avoid this is to make sure the baby gets more of the areola in its mouth rather than just the nipple. To detach a baby from your nipple if they are incorrectly latched, you definitely don’t want to just pull them off (ouch), but instead you should insert a clean finger into their mouth to break the suction, by running your finger along their gum line.

Also leaking is normal, especially at the beginning of breastfeeding, but it usually does slow down and stop as you continue breastfeeding and your baby gets used to it. You can use nursing pads and also press your nipple/cross your arms when you feel like you are leaking to help to try and stop it.

What about your diet; how does it affect the breastmilk? What can you eat? From this class I was told you can eat and drink anything, it’s just a matter of seeing what your baby’s reaction is (if they get gassy, fussy, hiccup-y, etc after a meal, check back to see what you last eat). Obviously some things to consider are making sure things like alcohol and caffeine are out of your system before you breastfeed (I think the advice was if you have an alcoholic drink, you don’t want to feel tipsy, and you want to wait about 2 hours before you breastfeed… but don’t quote me on those hours). Also for babies that have occult blood (invisible blood in the baby’s stool), the first things a doctor may advise you to avoid are probably dairy and soy, because they are the most common culprits that irritate the babies developing gastro-intestinal system (this is what occurred in my experience). The Kelly Mom blog has a post that goes into food sensitivities in more detail.

For pumping, the advice was not to start until 3-4 weeks unless needed and to make sure you get a pump with a suction cup that is sized correctly to your breast; you don’t want your nipple squished on the sides. The other advice was to pump in the morning, or after a baby’s feeding (I believe about 30 minutes after is the recommendation).

For general nipple care, the advice was to try using your own breast milk around the inflamed area first. Then you can try lansinoh or coconut oil on tender area, and then if it’s really bad, use manuka honey (here’s a cream made with it), but wash it off before feeding the baby.

Other painful aspects about breastfeeding include:

  • Engorgement: this occurs when you don’t breastfeed enough so your breasts become swollen and hard. Regularly nursing helps prevent this, but if you need to you can also remove milk by hand (or what’s called expressing milk) you can use a pump. Just express until your breasts are no longer hard. Cold compresses can also be used after feeding to help bring down the swelling. To express, massage the breast tissue and then grab above and below the breast with your thumb and forefinger and press back towards your chest wall, then gently squeeze, moving your hand all around to help drain multiple areas.
  • Mastitis: this is the most common problem, and it is when your breast gets infected with bacteria, causing pain. You will probably have a fever or other flu-like symptoms as well. This can occur from blocked ducts, nipple injuries, or problems with breastfeeding. You want to call the doctor if you feel this has occurred. Also also make sure to wash your hands frequently to reduce infection risk.
  • Blocked ducts: this is caused by not relieving the breasts. A blocked duct will feel sore and tender. Try taking a warm shower and apply moist heat, and/or gently massage before breast feeding. Also try expressing after feedings if you still feel engorged.
  • Yeast infection: this will cause your nipples to be shiny, red, and painful. Yeast (also called thrush) can also grow in your baby’s mouth so look for cottage cheese looking stuff in their cheeks.

Who can you call for help? Nowadays you can call your doctor, your baby’s pediatrician, and/or some hospitals also have lactation support groups (sometimes free), or lactation consultants (usually not free) that you can call to get one-on-one help.

A little more about breastmilk. In lieu of my own little own having some kind of sickness, I’ve been looking more into breastmilk’s functions. This searching led me to this internet viral photo showing how a mom’s breastmilk changed when her infant got sick. The 2013 study mentioned in that post talks about breastmilk’s immunological function and explains how when the mom or baby get sick, the number of leukocytes (aka white blood cells) in the breastmilk drastically increases to help protect them, because leukocytes help fight disease. I find that to be such a cool example of symbiosis. I personally have also noticed that breastfeeding seems to keep both me and the baby from getting some of the sicknesses that were going around (my mom, mother-in-law, and husband each got sick after the baby was born while the two moms were visiting!).

Lastly, I also read an article by NPR addressing the breastfeeding versus formula debate for poor countries.  The major points that this article made were that formula is not a godsend for impoverished countries for the following reasons:

  • formula requires water to make it, of which clean sources are not always available
  • formula causes increased risks of diarrhea and respiratory infections, and
  • formula can cost up to 30% of a families income, and subsequently families made dilute the formula to make it last longer, which reduces the amount of nutrients the baby gets per serving.

The article also talked about how it’s weird that we are constantly trying to research the benefits of breastfeeding when it’s as natural as “breathing, chewing, hearing, passing stool”. It also went on to explain that even an underfed mom can make excellent quality milk, and as for quantity, it is also enough except in the case of severe malnutrition. The latter point is interesting to me because I hear a lot of moms, including myself with babies labeled as “failure to thrive”, which essentially means our babies aren’t gaining weight at a rate that the medical professional expects. In my case, the doctor assumed I wasn’t producing enough milk and told me to supplement with formula. It turned out that my baby drank the same amount of formula as I was producing of milk, so I wasn’t the common denominator and rather my baby just drank only tiny amounts per feed. I’m curious as to why there are many medical professionals that believe many moms can’t produce enough milk when studies may be showing the contrary.

Anyway, the article ended by saying that it is up to the mom on how they want to provide for their child, however, it is important that they have accurate information to make informed decisions. This means that we would need to reform the system so doctors are never paid to handout formula samples, and on in which moms are not incentivized by free samples to use formula.