waiting on time is so friggin’ stressful!

adult alone autumn brick
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Today’s post starts off as a bit of a downer. I have been feeling a bit trapped lately.

First off (and I’ll need to go back and do some searching because I’m genuinely curious), of all the people out there going steroid-free/not on biologics who have eczema covering over 50% of their body (and all the concurrent fun symptoms that entails), did this degree of eczema impede or otherwise alter your life plans (specifically career goals and things of that nature)?

I ask because lately I have fallen into a rut where I feel like I am failing. I left a planned career behind because a continuously flare was deteriorating my lifestyle and because of the nagging fear that my flares would always be there holding me back, making me miserable in my field of choice (physical therapy at the time). So there I was, feeling grumpy, and wondering  how others with severe eczema who work in health professions do it. But then I talked to my husband about my frustrations, which, to be fair were compounded by the worries and stress I’ve had with breastfeeding.

So let me foray into that realm now. In a nutshell, the current issue is that Fi sometimes has blood in her stool (poop) and most doctors tell me to use formula, in lieu of focused elimination diets. This stresses me the f*ck out because one, the pediatricians have been inconsistent in their reasoning. When Fi was less than 2 weeks old I was told to use formula because Fi wasn’t gaining “enough” weight (which is pretty subjective especially since their measurements haven’t been the most accurate… but that’s a rant for another time). Instead of teaching me about different ways to entice a baby to eat more or about potential reasons why she might not be eating, I was told to try pumping once to see how much I make in a sitting, and then supplement with formula with however much I pumped to make 3 ounces. The logic was clearly my body was failing to produce enough milk. So I pumped and only made about half and ounce and I diligently tried to feed her 2.5 ounces formula. You know what happened? She only drank half an ounce of formula and then didn’t want to eat anymore. The second reason I get stressed by this push towards formula now is that initially when Fi wasn’t eating I was told to eliminate dairy and soy from my diet. When I asked three doctors about how to reconcile the fact that formula (including the hypoallergenic ones) have dairy derivatives and soy I was told 3 different things:

  • Doctor 1. The hypoallergenic formula doesn’t have dairy or soy. But it does.
  • Doctor 2. It (this was around day 10) is more important for Fi to gain weight than whether or not the formula has allergens. That’s great and all, but Fi wouldn’t take more than an ounce of formula or breast milk at a time.
  • Doctor 4: This particular other hypoallergenic formula (being prescribed at around 3.5 months due to the blood in Fi’s stool) has hydrolyzed milk protein (basically pre-digested milk proteins, in that they are broken down so supposedly easier for the baby’s digestive system to handle), while the brand prescribed to me at 10 days was partially hydrolyzed. Okay sure, but then there was no mention of the fact that the third ingredient in said formula is still soy oil.

My complaint with this process is that the pediatricians have no advice about nutritional or dietary changes. Doctor 1 told me to give up dairy and soy, and then try gluten and eggs too if that didn’t work, but openly admitted to not knowing much about how diet affects breast milk or if foremilk/hindmilk imbalances have an effect. The same doctor told me that we had to keep getting diapers tested for occult blood (invisible blood in the stool). Doctor 2 was more like “look she’s a baby. These things happen. She’s gaining weight now so we are good.” And doctor 4 was like “occult blood doesn’t matter, we only care about visible blood”. I have a hard time trusting my baby’s doctors if they are all giving wildly different advice. Oh, and another point I have to make. I didn’t seek out 4 different doctors. The practice Fi goes to usually just sticks us with whoever is available so we have seen 5 different doctors/nurses there and gotten wildly different advice from each one. Doctor 4 I mentioned was a GI specialist, which we went to see as per doctor 1’s advice.

As for Fi’s inability to gain weight fast enough from day 10? She started gaining weight (still exclusively breastfed) after we had her treated for reflux, (which I had noticed because she made gagging faces whenever she ate, and doctor 3 confirmed my suspicions go be correct). After a few weeks, the reflux abated and she was fine on that front.

My problem with this process is it feels extremely similar to how doctors treat things they can’t solve, such as with eczema. I’ve gone to state-of-the-art facilities, told a dermatologist my background including about having horrible topical steroid withdrawal symptoms, and been either convinced or scared into using steroids again (the scaring came from being told my organs would all be inflamed if I didn’t use steroids). None of them addressed diet, none of them offered any alternatives to steroids, though one did say if steroids didn’t work we would move to cyclosporin (an immunosuppressant drug used for people who get organ transplants so that their body can’t reject the new organ). That option was on the table so long as I was ready to get frequent check-ups for my kidney* to make sure it was functioning well, and so long as I knew I would be at risk for getting sick more easily. It felt like an extreme option to say the least.

*(I previously wrote liver but meant to write kidney!)

This constant push towards formula without trying less invasive means first, disturbs me. Formula and breast milk are very different. Breast milk gives Fi a better chance of not getting eczema (which she sorely needs given that both Jake and I have it) as well as helps her fight off colds by producing antibodies when either one of us is getting sick. Breastfeeding also releases oxytocin and other calming hormones to make us both happy mellow and sometimes sleepy lovelies when I nurse her (a nice boon!).

This is not to say I wouldn’t use formula if I knew it would solve her problems. But so far the evidence indicates that it may not. Her weight gain issue resolved without formula, despite it being implied over and over that my body was to blame for the issue in the first place. She could only be having weight gain trouble if I was underfeeding her, because my supply was too low, right? Imagine if I hadn’t thought to inquire about her reflex symptoms.

And if doctor 2 is right and this is stool issue just part of her developing digestive system, then we have cut her off breast milk for no reason. Plus the formula doctor 4 prescribed? It’s so expensive that there’s a black market demand for it, despite it being pretty much identical to the formula doctor 1 prescribed. What?

So anyway I have this constant lingering fear that my body is poisonous and killing my baby, so therefore I’m failing being a mother, and I can’t work first because of skin and now also because of my tenure as a failing mother, so I’mm failing as a working adult, hence the added stress of being a useless human.

I should probably qualify to say that despite Fi’ s ever fluctuating stool contents, she is quite a happy baby, still slowing gaining weight, and hitting milestones as she goes. She is  also a crazily active baby, which may be the reason she gains weight slowly as she does spend cumulatively hours a day flail kicking whatever comes her way and smiling about it.

I don’t know. I guess the problem is that I straddle unknowns so often that they are starting to get to me. It just sucks to feel like my body is constantly to blame. It feels like my skin is a fluctuating erratic b*tch and now my breast milk is too?

Another qualifier I have to add. After all these diet changes I’ve been doing, I have noticed that my skin is much less terrible this cold season than previous ones. So clearly something I’m doing is helping a little. And the same can be said about Fi. The blood on her stool has lessened so much from when we saw doctor 4 and I just started avoiding rice (which I ate all the time) and oatmeal (which I realized I wasn’t eating notably gluten-free ones (oats are commonly contaminated with wheat during processing)) and cocoa/chocolate (which has caffeine and historically I’d eat a lot of it at one time). But the other problem is all these factors take time. There’s always potentially a quick fix medication to mask the symptoms, but to actually suss out what works and prevent it from happening again takes time. And what’s more nerve-wracking then sitting around waiting to see if your changes help or hurt your baby?

And then I’ll think, well maybe it’s not my diet at all, but the fact that I have so much systemic inflammation living with eczema, and that’s affecting Fi (despite not being able to find scientific proof or any doctor that believes that that happens). I don’t know. There’s no worse feeling than the lingering doubt and insecurity that you are f*cking up your baby.

Anyway that’s the basic hum of stress I have undertoning my life lately.

To combat that hum, I have been trying to augment lived with things I know have always made me happy and continue to do so: books, and more specifically, library books. I am forever taking out book after book on all manner of subjects, to consume like it’s my calling, like ants to sugar. To this day I know I would love working in a public library; I have so many ideas swirling in my head about improvements to various existing ones to help further user accessibility and build community. I just love libraries and books. So much information right there, and for free! You don’t need WiFi or a smart phone or anything. It’s a relic of a bygone era that I think is so important for today, as it provides so many underappreciated values. You can go to most libraries, in most towns, without being a patron, and sit down and enjoy their services including free internet. Lots of libraries have free events from book clubs to baby hangouts to beer nights. Every library has its own history and is usually shaped by its community, so you can get a glimpse of what a town is like by just walking through its library doors. Plus most libraries have interlibrary loan systems where they are partnered with other libraries to make sure they can continue to supply their community with a wide array of materials. There are also some funky libraries out there including Bookmobiles or libraries with novel services like American Girl doll rentals or art and tech supplies (like with Maker spaces). Libraries are actually one of the coolest inventions mankind has created. I just can’t get over a system that lets me borrow so many stories (I think I currently have 11 out, 7 on their way through the ILL system, and 21 more on my radar to take out once I make a bit more headway with my current batch).

I frequently find myself singing to Fi (completely randomly as I haven’t seen this show in years), “Butterfly in the sky. I can fly twice as high. Take a look, it’s in a book. Reading rainbow. Reading rainbow!”

worried about lymphoma?

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One of the most frustrating aspects of having chronic atopic dermatitis is that many of the symptoms overlap with Hodgkin’s lymphoma, but since the latter is rare, it is seemingly unlikely that a person will have it while also being difficult to have enough concrete signs and symptoms that a doctor will feel it warrants further investigation.

For example, the primary symptoms of Hodgkin’s described by the cancer organization are enlarged lymph nodes (especially in the neck, armpit, or groin), intermittent or constant fever, night sweats, weight loss, itchy skin, loss of appetite, and tiredness. Chronic eczema for me has hit virtually all of those but a fever (and I never have fevers even when I am sick… in fact I didn’t even have a fever when I had a staph infection in my lymph nodes some years back!).

The other rub (possibly because of the overlap of symptoms with eczema) is that Hodgkin’s is generally not detected early on, and so unless symptoms changed drastically over a short duration (which I’m not sure this type of cancer does), it would be hard to know if what I had was Hodgkin’s or just another day of swollen lymph nodes, without getting a biopsy of said lymph nodes to confirm. Even then, apparently it can be necessary to need multiple samples to track what’s happening with the lymph node over time.

This is why I believe it is crucial to one, keep track of your own symptoms and body and immediately go in to see someone when something feels off. You are the only person that lives in your body and so it is important for you to be able to track what is going on because no one else will have the lifetime of records that you do. Two, it is so important to find a PCP/provide who you trust and feel able to develop a working relationship with as time goes on. It is necessary to build this relationship over time and feel confident that you are being heard, and always ask questions when you don’t understand or aren’t sure what will happen next. A lot of the preventative care comes from making sure you are ready and informed about what is going on with your body.

I’m currently on that second stage- working towards getting a new PCP (as I recently moved into a new town), in order to establish some kind of plan to understand when my symptoms are just eczema, and when they could be indicative of something more.

Today, I had a check up at my OB/GYN office where they gave me the glucose test (you drink a really sugary drink and they draw your blood an hour later to see if you produce enough insulin to handle the drink). Along with the blood draw testing my insulin levels, I got back data on my WBC, RBC, and the breakdowns. Apparently I have higher than average WBC, and a variation of out-of-range monophil, lymphocyte, esophil, and neutrophil levels that basically make it seem like I am fighting a bacterial/fungal infection or something of the sort, but also still could fall into the realm of someone with lymphoma. So in a nutshell I am still destined to schedule a PCP to try and make sense of all this data and see if there is a cluster of data points that would help more or less clear up the sensitivity or specificity of whether or not I need to get checked for lymphoma.

 

REFERENCES

“Signs and Symptoms of Hodgkins Lymphoma.” American Cancer Society, https://www.cancer.org/cancer/hodgkin-lymphoma/detection-diagnosis-staging/signs-and-symptoms.html. Accessed 4 Apr 2018.

how to find dr. right (dermatology edition)

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As one of many people who sees a dermatologist for some kind of reoccurring eczema or atopic dermatitis (AD) and as someone who has cycled through the what feels like all options for treatment (often never finding that perfect product, the lifestyle management, or that patient-doctor connection), and as someone always searching to get to my dream skin, I am always hunting for ways to build a relationship with my future Dr. Right.

The most important part of having a good working relationship with your dermatologist is being able to speak your concerns. I have gotten to a point in my life where, when meeting a new dermatologist, I throw out my entire skin background in a verbal paragraph; the goal being to test the waters of this new budding relationship. Here are some examples below for personal context:

  • I have had topical steroid withdrawal (TSW) before because of my excessive use of steroidal topical ointments in my earlier years, and I am somewhat hesistant to use them now. I am also not entirely interested in oral steroids again, because of their shopping list of side effects. It is important to speak your fears of strong medications, so your derm knows what you need to discuss.
  • I have been using coconut oil on my skin and have had no problems with it except that it didn’t prevent a flare. This bit of information is shared because it’s true (and you never know when new research will come out saying that coconut oil is not as good as we thought it was… e.g. what happened with olive oil) but it also can be used to get the derm’s opinion on natural products/non-dermatologically created alternatives.
  • I have been avoiding gluten and soy (because they are common allergens and because I have other legume allergies) for a while and worry that me starting to eat them again this summer may be part of the reason for my flare. This is brought up to bridge into the field of nutrition to figure out my new derm’s opinions on diet in regards to its effect on eczema and management.
  • I know about the current new drugs on the market (Dupixent) and wonder about its effect on pre/peri/post natal women. It’s crucial to remember to bring up reproduction-related information if you are going to start a drug that hasn’t been tested on men or women for reproductive side effects, if you are interested in having children one day.
  • What is the plan for me and what will my management entail going forward? After all, I want to know she isn’t just going to prescribe me a crap ton of drugs and wish me the best with my life… continuity of care is extremely important for preventative care and management.

In the case with AD, I was hesitant about both topical and oral steroids as the major component of my management, and my derm was receptive to my initial hesitation. However, she also argued with the need for inflammation management, because in an untreated state, chronic inflammation will damage other organs and systems in time. So she walked me through the details about what she was thinking for both types of steroids- the dosages planned and how long she planned to keep me on them. If you are confused about what the drugs do or their safety, it doesn’t hurt to inquire more (for example 60mg of prednisone is on the high end of how much doctors will prescribe).

My derm told me of her roadmap for my management (an important thing you want your dermatologist to bring up!)- how long she’d want me on the oral steroids, which topical steroid was for my face versus which for the rest of my body, how we’d cycle through a 2-week steroidal/1-week non-steroidal topical cycle, and the need for more frequent bleach baths to prevent staph infections from other healthy-skinned people (because everyone carries some level of staph on their skin).

When I asked her my big question — what can I do to prevent these flares from coming back aggressively again, she also brought up diet changes, as well planning future appointments to monitor how the preventative measurements were going. All in all I left with a sense of her being committed to making sure things worked, not just prescribing me all the meds I could carry and hoping I didn’t ever need to come back.

The big takeaway from being a frequent flyer of the dermatology world is that it is okay to need to find a dermatologist who fits with you. You want someone you feel comfortable with, who you can talk to openly and feel like they both have the time to listen and are receptive to your ideas and where you are in your health literacy (i.e. do you like written or oral directions, how familiar are you with the drugs/treatments/interventions, how much you feel you understand or care to understand about the condition as a whole, how it works genetically, immunologically, neurologically, etc).

You should feel like you are leaving with enough information to get you by AND also with your questions answered, but also that you know what to expect and when to reconnect with the derm in the event that something isn’t working just right. You don’t want to feel like you’ve heard it all before, or that there is something the derm just isn’t getting about you. The relationship needs to be out on the table and the communication level high. If you have persistent remaining questions- ask them! If you are frustrated by something, voice it!

With any chronic disease, management relies on the ability to be able to communicate your feelings and symptoms, and on the ability of the provider to be able to give you the support and care contingency to make sure that you don’t falls through the cracks in the system. So when working to develop a fruitful and useful relationship with your dermatologist, don’t be afraid to be a bit selective and work through difficult questions to see if you have found your Dr. Right.

 

Here’s a photo of my own hands October 2016 (left) and March 2017 (right):

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