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Healthcare

I know it’s only the 21st, but I am already eager to put this month behind me. It’s been another month of ear issues (both ears this month) for Josh and we are not sure exactly what’s going on. We haven’t been able to get his ears stable enough/healthy long enough for even an audiology evaluation since October. He just finished up another course of strong, broad spectrum antibiotics. I have an essay coming out soon in The Mighty that will shed some light on how I feel about our latest run in with antibiotics.

In light of all of this, it is time for some mood-boosting gratitude.

  1. There is an owl living in one of the large pine trees behind my house. I hear him hooting each night at about 5:30 pm (dusk here in Minnesota in January) and sometimes just before dawn. I went out into the woods behind my house on Sunday, with my long wool coat over my PJ’s–it was ten below zero at the time, and I listened just below the tree. I cannot tell you what a singular thrill it is to hear an owl up close. But then, he decided to swoop down on some prey and I saw his wings spread over me (I wasn’t the prey). It will likely be one of the most awe-inspiring moments of my life. I feel most protective of this owl and sometimes I fancy the owl is protecting me.
  2. I’ve finally set up my own writing room in the upper level of my house. It is a light, airy space. It is a piece of heaven in my own home.
  3. Trampled by Turtle’s song “Duluth,” which gets me through these cold winters. “Still I like the quiet/Of Duluth in the winter/In the sacred bond/There’s no place like home.”
  4. The rosary. I’m not Catholic, but I’ve had lots of Catholics in my life, including my dad’s whole family. All of my kids have spent time in Catholic schools; now, Josh joins the ranks. He’s learned to pray the rosary. I’m learning too. I’ve thought much about how Mary was acquainted with this experience of watching her child suffer. I feel a kinship with her when I pray the rosary. Although, I’m not sure I’m doing it right, maybe “right” doesn’t matter so much as the act of saying this prayer with a willing heart.
  5. I was given the guidance to get my hands on a copy of Paul Kalanithi’s book When Breath Becomes Air. I elevated this book above the waiting 25 or so books on my “to read” list. I read this book in less than 24 hours; I will read this book again. It is a magnificent, life-changing read. I thank Paul for leaving behind surgery to write before he passed away last March. God be with you, Dr. Kalanithi. You’ve made a huge difference in how I view life, God, vocation, the act of writing, and how I view my son’s doctors and surgeons (I think I wanted them to be small gods–now I realize it can never be so; God can use members of the medical profession, but they will never be perfect, as life will never be perfect).
  6. My thesis project seems to be falling into place, during this second semester of thesis writing; and I have a new blog to support the putting of my thesis out into the world, when it is time. See www.heidifettigparton.com.
  7. I get to see the below view when I leave my local food co-op; even beautiful on cold winter mornings.

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No shortage of interesting chalk art on our sidewalks this summer.

No shortage of interesting chalk art on our sidewalks this summer.

I have suffered from yeast/candida overgrowth as long as I can remember–at least since puberty. It used to take the form of vaginal infections but at some point in my twenties, about a year after child # 2 was born with a nasty case of thrush that lasted about six months, my candida overgrowth took up residence in my mouth. At first, the doctor’s fought it with liquid nyastatin, an anti fungal, which eventually triumphed over the thrush in my son’s mouth. For me, it never worked for long. Somewhere in my early thirties, however, my new doctor suggested trying Diflucan, an oral anti-fungal in a pill form. Whenever I took a Diflucan, it always seemed to knock out my thrush within 24 hours. But the thrush always came back. It got to the point where my doctor gave me a 12-15 count refill at the time of my annual physical so I could just go to the pharmacy and get a Diflucan whenever my mouth started to grow fuzzy and white (and sometimes itch). It was a good day when the pharmacy would allow me six pills at a time–not that I’d take them all at once but it kept me from having get to the pharmacy every time I needed a pill.

I even took Diflucan a few times during my pregnancy with J. I wasn’t cleared for the first trimester, but as soon as my second trimester hit, my midwife gave me the go ahead to take a Diflucan because I was convinced my out-of-control thrush was, at least in part, causing the crazy, awful morning sickness (that lasted all day and night), which I never experienced with my first two. All in, I took three Diflucan pills while pregnant. Not long after J. was born, Diflucan was found to cause some birth defects. As I understand it, it is no longer given to pregnant women. It is hard for me to now not wonder if somehow the Diflucan interfered with the proper development of J.’s middle ears and molars.

In the years following J’s birth, I began to notice that I would feel extremely run down after taking Diflucan. Perhaps this was merely a yeast die off reaction. (Lately, I’ve learned to not discount symptoms as mere die off reactions–not everyone is strong enough to detox). Overtime, my symptoms upon taking Diflucan were nearly as uncomfortable as just living with the thrush. I began to experiment with going longer and longer without taking the dreaded drug. Early last June I spent some time in a hot tub, which I’ve long known is a total “no no” for me, along with scented bath oils and soaps. Within days (or hours) I had total yeast overgrowth in my mouth and vaginal area. Fun times. I had been reading about the battle against yeast in one of the many “Kill the Yeast” type of books that I have in my library. This book instructed doctors to prescribe numerous rounds of Diflucan, day after day for weeks, to ensure that all of the yeast is killed. At that time, I had a small stock pile of Diflucan pills saved up from extending the time between doses. I decided to self-prescribe a mounted daily attack on enemy yeast (don’t stop reading here and try this same thing at home). So on June 6th I took one Diflucan and on June 7th, I took another. And on June 8th, I couldn’t get out of bed. I cannot really describe how bad I felt but it was likely the worst I’ve ever felt. Ever. I couldn’t tolerate light, I was so weak I could hardly stand, my head was in such pain I wanted to amputate it, and my digestive track made sure that I did in fact have to manage to crawl to the toilet every hour or so. I could hardly drink water even. I was more exhausted than I’d ever felt and yet, couldn’t really sleep. It felt the life force leaving me. I knew that if I felt that way long-term, I’d want to die. It wouldn’t have been an existence worth maintaining. Fortunately, Hannah was around to help out and between Hannah and Chris, the care of Josh was covered for a few days. Chris would sit by my bedside and say things about going to the doctor, but I couldn’t move and felt like doctors had yet to help me with any of this stuff. So I am sure that the yeast experts would tell me that I was experiencing extreme die-off symptoms (and I even thought that at the time) but even if this were the case, I am pretty sure that place I found myself one June 8-10 of last year was not healthy or desirable, even in the name of killing off yeast ( I’ll get into this more extensively in my next blog post).

On the first day that I felt well enough to get out of bed for a few hours, I went to a chiropractor that I had met at a yoga training about six months earlier. After a weekend spent in Yin Yoga training together, she took me aside and told me that she thought I was in adrenal fatigue. I discounted her diagnosis at the time, but had in fact spent the last 6 months watching my energy dip lower and lower. When I raised this with my MD, she offered anti-depressants. I was quite certain I wasn’t depressed (been there, done that in my twenties). In my desperation (and my frustration with all of the MDs who had failed me), I took the first appointment at this chiropractor’s office that morning. After about an hour of telling her my history and crying about how hopeless I felt, she told me that Diflucan actually is sort of like an antibiotic. It goes to work and kills fungus but it also wipes out all the good stuff that you need as well. She told me to stop taking Diflucan, even if I did nothing else. Well I didn’t do nothing else. I’ve done a ton else (will give detailed report out in near future post). I’ve gone to lengths I never thought possible to try to get my health back. I feel like I am getting closer on that front, but still not there. At the very least, however, I do believe I understand my yeast issues better than any medical doctor has, including the medical doctor I began seeing last November (’13) who also practices functional medicine. She too wanted me to take a two-week course of Diflucan. I am so glad I didn’t. I am so glad I stood my ground. And now, I am happy to say that I am one-year clean of Diflucan today. A small victory, but a victory nonetheless.

 

From Chalk Board in Daughter's Dorm Room

From Chalk Board in Daughter’s Dorm Room

“Embrace the maximally postponed decision” is a philosophy I’ve embraced ever since I read about it in a book about trying to buy/build a 1000 square foot house for under 100,000 dollars. As an aside, since my twenties, I’ve been intrigued by the concept of living in a very small, but well-built house. I still plan on embracing the small-house movement, but it continues to remain not appropriate for the number of people that I have floating in and out of my life. Fortunately, Chris shares my fascination and maybe someday, we’ll live in an airstream.

Anyway, back to the decision. Ever since Josh’s right ear (situs of Tympanoplasty and Ossiculopasty in May, 2012) started to drain late last year, and our ENT told us it was time to either have a CT scan or an MRI, I have engaged in extensive research, as well as entertained an internal dialogue, debating the pros and cons of each. Josh was originally scheduled for a CT scan in January, but I talked to our ENT and asked if we couldn’t  just “watch” for a few months to see what happens. He agreed. We were going to make a decision in March, but our ENT appointment was rescheduled twice and we didn’t end up seeing our ENT again until April 3rd. In the meantime, our ENT seemed to have changed his own view on the matter, now favoring a newer type of MRI to look for cholesteatoma in Josh’s right ear over a CT scan. At the same time, our new pediatrician called the radiology department for me and concluded that a CT scan (it would be Josh’s 2nd CT), even with the high radiation, would be better for Josh than trying an awake (without sedation) MRI for Josh. In all truth, I think I was hoping that somehow neither would be necessary, if we postponed the decision long enough.

To monitor Josh’s ear, we’ve been seeing our audiologist every six weeks throughout this time and, unfortunately, from February 9 to April 17, she’s noted a 15 decibel loss across the frequencies for Josh (so he is now at 30 decibels–but likely still falling) This is a very significant loss and it’s definitely hurt him at school. In particular, he cannot understand the kids on the playground and he always feels left out (his words for this are “no one tells me what they are playing anymore”–very typical situation for Hard of Hearing kiddos). Josh has had more than his fair share of tears over the past month that I believe have their origin in the social isolation he is feeling (also, I think he is grieving this loss, without really understanding what is happening). In the meantime, the hearing loss in Josh’s left ear has been getting progressively worse and we thought it was supposed to remain stable because it is conductive loss. Needless to say, we would be aiding Josh in the right ear again if it were possible but there is too much drainage for an aid right now. On April 3rd, our ENT and I agreed to first try Josh with an awake MRI to see if he could handle it. Most people I’ve talked to since have told me they don’t believe a four year old could handle an awake MRI. The thing with Josh is that he is super amazing about some medical procedures but has a terrible time with others. For instance, he’ll sit perfectly still to get his ears cleaned out under a microscope, even with a vacuum suction, but he freaked out completely when given his sweat test for cystic fibrosis earlier this year (and we were told by the lab tech that it would be painless).

With our MRI scheduled for April 28th, I continued to debate whether I shouldn’t just change over to a CT scan to avoid all of the anxiety the MRI might entail. I’ve been working through Mark Nepo’s The Book of Awakening this year. I happened across a daily entry this past week that had to do with making a major decision. Nepo says that if you are having trouble making a decision, look what is under that decision. Yep. I did this and realized that I am trying to make the perfect decision in this case because I feel like I so failed Josh in a medical decision two years back (see this blog entry for further details). Because of this decision, I think I’ve decided that going forward, I owe Josh the most well-researched, well-reasoned decision. Always.

As the debate waged on in my head, something happened. On Wednesday, Josh told Chris he heard a “whooshing” sound (he described it sort of like a whirring fan or static on a radio) in his right (surgery) ear. It was really bothering him to the point that he was hitting his ear. While the ENT’s office was about to close for the day, I miraculously got a hold of our ENT’s head nurse (I think I’ve learned to work the system a little bit). She told me nothing could be done but to have our audiologist look in the ear the following day (J. had an appointment already scheduled) and call to tell them what our audiologist saw. She also suggested trying to move up the MRI. Thankfully, the whooshing noise stopped before Josh went to bed that night.

The next morning, I got on the phone with radiology and they moved up Josh’s MRI for Monday, April 21st at 8 am. Since time is of the essence here, it was decided to also schedule a CT scan for 9:30 am, in case the MRI without sedation doesn’t work for Josh (it would take a week or two longer to get a sedated MRI scheduled). So, there you have it. Done. The decision will really be made for us by how Josh does on Monday morning.

When our audiologist looked in Josh’s ear with her otoscope she was pretty sure she was seeing his entire middle ear; meaning perhaps a total failure of the tympanoplasty (reconstructed ear drum–where did you go?). She let me have a look and yes, I am seeing a completely different ear than I was a few months back too. I am not sure if the tympanoplasty “blew” last week when Josh heard the whooshing noise. I called our ENT’s office from our audiologist’s office and they put Josh on our ENT’s appointment for Tuesday the 22nd at 9 am. So we should be learning more soon. At this point, I recognize our desperate need for information as to what is going on in Josh’s ear and so I welcome whichever test works for Josh on Monday. It is a bit of a relief to know that one of these tests has to be done and the decision has all but essentially been removed from my plate. And all that wasted time spent worrying . . . although I do not regret the time spent researching this issue. Still, it is good to know that sometimes, the answers just come and no amount of forcing will get us there sooner than we are supposed to arrive.

Sometimes the decision maximally postponed gets made for you. In a way, it is a weight off of my chest. Crazy as that sounds.

Josh at his sweat test in February (after the worst part of it)

Josh at his sweat test in February (after the worst part of it)

 

Recently, I attended a writer’s workshop for the writing mom. I had no idea that since I began this blog back in 2009, so so many moms have begun blogging. And so many do it so well. Who am I? I ask myself this question from time to time. And then I fail to write a blog post. Instead, I tend to spend my time researching my children’s medical issues so that I can be one of those much maligned, as of late, “educated moms” who medical doctors have to contend with these days. I remember once hearing my daughter’s Irish Dance teacher say that her job would be fantastic if it weren’t for the parents. I suspect many pediatric doctors these days are feeling the same way. Internet research can be dangerous but it can also be extremely useful. And then, being able to tap into the collective wisdom of fellow blogging moms (and getting their support)–well, that is just a wonderful blessing of the internet.

So I am not sure why I had never run across this article before, but last week I found the quintessential article on tympanoplasty surgery and yes, cholesteatoma. It is written by an ENT, but written for a lay audience. And he really gets how to write for a lay audience as well. After reading the article, I cried and cried. Because I finally understood–fully understood–the decision we made for J when we opted for his tympanoplasty. I also understood the extreme and rare miracle of his hearing being restored through the surgery. And, well, I understood the implications of cholesteatoma oh so much better. Every day this blog is visited by people looking for more information on Tympanoplasty and for those of you here for that reason, here is the link to that magnificent article by James Fairley. “Dr. Fairley, I will likely never meet you but I am forever grateful for your contribution to my knowledge base in an area where I need the most knowledge possible to make the best decisions for my son going forward.”

And so we met with our ENT this past Monday. He walked into the office and looked at the piece of notebook paper in my hand. The paper, front and back, was filled with questions. Some of them “if” “than” type of questions and so I had to proceed in order. It was a busy day in the office, in spite of the 50 below wind chill temperature outside, and he was already behind by 45 minutes. Yet, still he sat down and got comfortable when he saw my list of questions.

I told him, “I have some questions for you.”

He replied, “I can see that.”

Well, I have to hand it to him. He listened to and answered all of my questions and every last one of my clarifications. We left his office with the understanding that he would follow J’s ear for the next few months and we would delay a CT or MRI until either we cannot put it off any longer or the drainage pattern gives our ENT a better sense that we are looking at cholesteatoma. He agreed to using an MRI but said that there is risk in sedation of kids at this age too. He said, “But you guys are the parents. I just present the options and you get to decide.” So over the next few months, I will conduct research to help us weigh CT vs. an MRI; another brutal dose of radiation or yet another sedation.

After making my way through our list of questions, I did apologize a little for the inquisition. Our ENT responded, “You are his parents. You have a right to be concerned and ask questions.” And then he added, “Of course, you two might be a little more concerned than most but that’s okay.” I said, “Hey, I know–it’s not healthy but I am working on it.” I didn’t tell him that this tympanoplasty surgery has driven me to attend Al-anon when I haven’t lived with an alcoholic now for 13 years.

Chris said he had kind of fallen back in love with our ENT after seeing how he handled my questions. And I guess I did too. It felt like a small triumph. We were able to cancel the CT and wait a bit. We will have an actual choice between a CT and an MRI. And, at this time, there is no concrete reason to believe J has cholesteatoma. Well, I’ll take it.

But as it so often goes with J, one triumph (small as it was), is followed by upset. J had some not good blood results come back from his pediatrician’s office and I got the call about those the day after J was at the ENTs office. And so, on another 45 below windchill day, I was rushing J off to the nearest Children’s Hospital for more blood tests. His blood draw from the week earlier had been nothing short of disastrous and so I had his OT calling to talk to the lab director to prep them for J as we were walking in from the parking garage. They did everything right for his SPD issues, but the best tech they had couldn’t get blood from J. She said his veins were jumping around. J was traumatized and screaming but we let another tech try because the other option was to try to walk him back into the hospital the next day and try again (ugh, I don’t think so). She got the blood. And now we are waiting.

As I drove home with J yesterday from the blood draw, he stared blankly out the window, even though I was playing his favorite CD. He seemed completely defeated by the experience. Hurt, actually. Yes, in the physical way but in a deep emotional way too. I know that there are children out there, particularly those with cancer (I am continually encouraged and amazed by the mom blog ourlittlehazlenut.blogspot.com) who have endured far far more medical procedures than J. Still, I started crying silently on the drive home as I thought about the large number of stickers (I am certain more than 500 now) J has received after medical procedures. Just that day, the lab tech had given J four stickers and a can of bubbles because she felt so bad. She told us she was very experienced and had never had a blood draw go so poorly. She told J she’d have given him an iPad of his own, if she had had one to give. She said, “He is just so sweet and he tried so hard.” Yes, so sweet. So sweet. I will continue to question and seek the best answers and do all I can for my sweet little boy. And when I get a free moment, I’ll try to blog about any learnings that might be shared and prove valuable to other moms.

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I always ask my yoga students to tune into what is happening in their own bodies before beginning to practice. Quite simply, you cannot make any change without acknowledging the starting point for that change. You can’t institute positive change, without knowing what it is you are seeking to change. You cannot heal your body without notice what needs healing.

And so, last week I noticed that a little sore on my nose was bleeding. At that moment, I finally acknowledged that three little red sores on my nose had been around for quite sometime–perhaps 5-9 months–long enough that they had just become a new fixture on the landscape of my face and I allowed them to just blend into the brownish age spots on my cheeks and the wrinkles around my eyes. We add new topography to our face as we age, no? But the bleeding for no reason; that got my attention.

I visited my dermatologist this week (I’ve had lots of suspicious moles removed over the past five years so I have a dermatologist already in my cue of yearly visits). The three sores were actually pre-cancerous. The dermatologist burnt them off. I look like an insect now, walking around with three nicely spaced round burn spots on my nose. I am not sure when they will heal over. Until then, I think most people must assume that I fell off my bike, or something.

My dermatologist told me that if you have any sores that persist longer than two months, without healing, get them checked out! I always assumed skin cancer just came from moles. Not so, it turns out.

I am now more than ever aware of the fact that we need to tune into our own bodies. You can’t rely on the healthcare system, whether it is Obamacare or an HMO or your very trusted family doctor of thirty years. Heathcare starts with each person. You need to notice what you eat, notice how you move, notice how your breasts feel from month to month, notice sores that don’t heal, notice insistent back pain that has no known origin. You’ve got to feel to deal to heal.

thatgirlArlene

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