To the Doctor Who Called Me an ‘Interesting Patient’

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A few months back, I was visiting my student health center for something completely unrelated to my chronic health issues — an ingrown toenail. This doctor wasn’t a specialist or a physician I usually see; he was just the only doctor available for the day and time that worked with my schedule. 

Of course, when a doctor stumbles upon my medical records, they can usually be a little bit surprised and maybe caught off guard, especially when they might not deal with chronic illness patients on an everyday basis. I’ll never forget the reaction from the doctor that day as he read through my medical records in a cheerful voice: “Addison’s disease, psoriasis, a history of shingleslupuspsoriatic arthritis. Wow. You are one interesting patient.”

An “interesting patient.” I’m not sure I had gotten that one before. I was diagnosed with my first illness when I was only 13 years old. This is when I first started to learn how to manage my health — ordering my own prescriptions and refilling them, doctors’ appointments, blood test appointments, etc. Since then, I’ve dealt with countless health care professionals and had several comments thrown my way: “Wow! What a combination you have,” “You’re sure on a lot of steroids,” “You’re pretty young for all these health problems” and “You’re really susceptible to those autoimmune disorders, huh?”

Until that day, though, I had never gotten “interesting,” and for some reason, that comment has been sticking with me. So to the doctor who called me “interesting,” I have some things I wish I would have said to you in that moment. I am quite interesting, but not for the reasons you may think. 

The fact that at the age of 22 I have lived with illness for over a third of my life does not make me interesting. Or that lupus took over a year to diagnose and psoriatic arthritis even longer is not interesting. My own self-diagnosis of psoriasis on my scalp because not a single doctor would listen to me is not what makes me interesting.

The 18 pills I take each day to keep my body working is not interesting, nor are the three physician specialists, pharmacist and blood technician who I have become familiar with. The multiple nights I have lied awake wondering if something else is wrong with me because the medicines aren’t working isn’t all that interesting. Neither is the fatigue I fight daily. The way I change my diet to help alleviate my illness symptoms is not interesting. The way I face mental health challenges from the weight of dealing with physical illness is not interesting. The truth is that none of the qualities, symptoms or nuances of my health status make me an interesting person.

Do you want to know what makes me an interesting patient? 

It’s because at the age of 22 I have lived with illness for over a third of my life, and I haven’t let it stop me from living. I’m interesting because despite the ups and downs of illness, I hold several hobbies — yoga, art, reading, swimming and baking. It’s interesting that I completed a triathlon five months after my lupus diagnosis. I am interesting because I love the ocean, sunsets, hammocks, Disneyland and camping. I love to surprise people, take photos and I love pugs.

My friends and family mean everything to me. I want to have a career that will help others who live with disabilities, illness or other circumstances out of their control. I graduated college with honors and a thesis research project. I’m currently doing a year of service in Alabama. I am kind, gentle, loving, compassionate, positive and giving. I overcome setbacks, and I try to find the good in everyone and everything. This is what makes me who I am. 

This is what makes me interesting, not a collection of papers detailing the things I have to live with, but the way I live with them and the person I have become despite it all.

Lead photo source: Thinkstock Images

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Should I Become a Mom Despite My Chronic Illnesses?

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Those of you who know me in real life, and those who have been following my blog for quite a while, know that the one thing I really want from my life is to be a mom.

Unfortunately, around the time we started having serious discussions about potentially starting a family in the next year or two, I had my first major crash. Over three years later, and we’re having these discussions again, but this time my health has been the major road block.

Starting these conversations has been difficult this time around. My husband has not really wanted to talk about it because he feels like he has to be the bad guy saying no when he knows it’s something I really want. He has wanted to wait until I was physically capable before we had the hard conversations, but not talking about it has been hurting me more than having honest conversations.

Being a scientist at heart, he really needs us to have logical and rational conversations about how this will all work and he struggles when I get overly emotional during the conversations.

So… where have we got to?

We have agreed that I need to set some goals to get to a point where I feel confident that I can physically cope with the pregnancy and the uncertainties that come with raising a child.

The goals I have set myself are as follows…

I believe that I would be physically capable of handling the stresses and uncertainties of pregnancy and raising a child if I can achieve the following and maintain it for at least two to three months with no major crashes/flare ups:

  1. An average step count of around 7,000
  2. The following average breakdown of activities
    • Less than 30 percent rest/mindless activity — on average around 25 percent (meditation, naps, audiobooks, TV, Facebook, and travel when he is driving)
    • 10 to 25 percent mental activity (work, blogging, reading articles, etc.)
    • around 50 percent physical/social activity (exercise, housework, outings, etc.)

To determine how I’m tracking for these goals, I track my daily activity using a time tracking app on my phone and my steps using Garmin Connect and my watch. Over the last few months, I’ve reached a point where I am meeting most of these goals, so we’re getting there.

We’ve also been having discussions around the difficult questions like:

  • What will happen if I’m having a crash?
  • How will I cope with the day-to-day activities of looking after a newborn/toddler/older child?
  • What kind of support do I need for this to be possible?
  • Not only can I have a child, but should I? Is it fair to the child?

After a lot of research I’ve come up with the following answers so far.

What will happen if I’m having a crash?

Flares and crashes are part of the parcel with many chronic illnesses, so it’s important to have some sort of system in place for dealing with them.

I think the first five years will be the most difficult to cope with as the child will be too young to actually understand what’s wrong when mommy needs to go lie down and isn’t able to do all the things they want to do. Depending on the severity and duration of a crash/flare up there are several things that I can do to make sure I’m not neglecting my child during this time…

  1. Be realistic about what is really essential to be a “good parent.” A young child doesn’t necessary understand what is going on, but they are aware if their parents are there for them or not. Realistically, the occasional day of “low energy activities” is not going to be detrimental to my child’s health and mental well-being as long as I’m with it enough to be there with them.
  2. Have standby “low energy activities” available. This could mean a day in bed reading stories, watching TV/movies, or listening to music. It could mean allowing my child to have free play time while I observe from the couch.
  3. Have family support available on call if needed. At this point in time we are very lucky to have a large network of family support with reasonably flexible schedules.
  4. Do my best to minimize the chances of a crash/flare up occurring. Obviously prevention is better than treatment, so having systems in place to minimize the likelihood of a flare is important. The ideas I’ve come up with (or found while researching this topic) are:
    • With a newborn, rest when ever the baby sleeps. During the first four to eight weeks focus only on what is necessary — feeding, cleaning and resting with the baby. If possible, have support come in to do other tasks like cleaning, cooking, etc. (We already have a cleaner coming in once a fortnight, and — because I’m keen to use cloth for health and environmental reasons — I’d consider a nappy service for at least the first while).
    • As the child grows, continue to pace your activities. Consider having regular days/times where the child is in someone else’s care (family, child care) so that you can still have regular rest breaks.
    • Consider using a combination of breast and bottle feeding so that others can assist. This would be particularly useful for night feeds so that I can still get reasonable sleep. The impact of sleep deprivation on my health is one of our primary concerns at the moment.

How will I cope with the day to day activities of raising a…

Newborn?

From what I’ve read, the newborn stage (apart from the sleep deprivation) is relatively simple to cope with. As your baby is not yet mobile, it is easy to do low energy activities with them. Most of your time would be spent just feeding, cleaning (nappy changes, etc.) and cuddling your new little bundle.

As stated above, I’d consider having support services in place for cleaning, etc.

The verdict on breastfeeding vs bottle feeding for those with chronic illness is still out. Breastfeeding is simpler in that you don’t need to worry about sterilizing bottles, making sure the formula is at the correct temperature, or just using up your energy in making up the formula. However, it uses much more energy to breastfeed and can leave you physically more tired (something a person with chronic fatigue doesn’t really need) and you can’t share the task of feeding the baby. Personally I’d still like to breastfeed, at least for the first few weeks if possible, but would be open to pumping and supplementing with formula so that my husband and others could help with feeds after the first few weeks.

To make breastfeeding (especially at night) as easy as possible in the beginning I would like my child to sleep next to me. However, due to my pain levels I tend to toss and turn at night and my husband is a very heavy sleeper so I wouldn’t want my child in the bed with us. I’d look at getting something like the arm’s reach co-sleeper which converts from a co-sleeper bassinet to a free-standing bassinet to a “read to me” love seat. I’m interested in getting items that will have longevity in terms of usefulness and style.

As I mentioned above, my passion for sustainability and my own experience with disposable items near my nether regions (I’m allergic to disposable pads, etc.) mean I’m keen to use cloth nappies on my child. I have done a lot of research on this topic and feel that it is doable even with limited energy and physical capabilities. With a young child you will already be increasing your washing requirements to keep their clothes clean, it doesn’t add that much to throw in a load of nappies every two days or so. It’s even easier if you use a nappy service that collects the dirty ones once a week and washes and returns them.

Crawling/Toddler?

This when I think things will start to get interesting. At this point in time I believe I’d be considering putting my child into some form of care (family members or child care) one to two days/half days a week so that I have some ability of pacing and having some more intensive rest. I’d also consider going to spend days at other people’s houses (or have people over to visit) so that I have some support during the day.

Older Child?

As my child gets older I’d explain to them in age appropriate ways how my illness impacts our life and why I need rest periods.

To someone without a chronic illness, the level of thought and planning I have put into preparing for pregnancy may seem a little extreme. Those who do have a chronic illness though will understand why it’s important to think through all possibilities.

The answer to the question, should I have a child, is such a personal decision to make that I wouldn’t try to answer it for anybody else. For me, the answer is yes. If pregnancy was not possible or too dangerous I’d still like to find a way to be a mother. I’d consider adopting or fostering as a means of fulfilling that nurturing role. At this stage, though, I’m willing to try for pregnancy and see how we go for a while first.

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What You Can't Tell From Looking at Those of Us With Invisible Illnesses

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This week is invisible illness week.

Admittedly it is not something I think I’ve ever posted/written about, but this year it feels more relevant to me and I’m a little bored lying in the hospital right now, which has got me thinking that I cannot let this opportunity pass by.

In case you’re wondering, an invisible illness is a chronic illness that can’t necessarily be seen by the naked eye and are not apparent on looking at someone. There aren’t obvious plaster casts or tubes or oxygen masks or aides… just seemingly normal people walking/sitting among everyone else.

While this does sound appealing to be able to not look disabled or ill, there are times when this can be even harder than if you looked sick. Sounds crazy, right?! Truth is, it’s simple!

The lack of physical evidence in plain sight makes it much harder for people to comprehend or even for some to acknowledge, which makes for some really challenging and unnecessary situations. 

I could go into masses of stories about times people have been misjudged or mistaken because of an invisible illness, but I won’t. Instead, because it’s Invisible Illness Awareness Week, here’s some food for thought…

Because it’s not staring you in the face doesn’t mean it’s not hidden out of your sight. 

Because the person isn’t a blubbering mess doesn’t mean they’re totally fine.

Because someone doesn’t talk about their illness 24/7 doesn’t mean it’s not as life-consuming or life-limiting as visible illnesses.

Because someone doesn’t use a wheelchair or walker on every single day doesn’t mean they’re lazy or faking it.

Because someone parks in the disabled spot but gets out of the car and walks inside the shops doesn’t mean that they don’t have an illness that makes them sick and unable to walk much further or stand for a limited time. 

Because someone says they can attend events and cancels at the last minute doesn’t mean they are always bailing or uninterested in what is happening.

Because somebody can go for a walk one day doesn’t mean they will be able to get out of bed the next. 

I could go on forever with this list, and that is really sad. Sad that in this day and age we continue to second-guess people and look for their flaws or dishonesty. We see with our eyes before we think with our heads or hearts. We look for the “bad” person or the fraud before we look for the fragility of someone suffering. It is truly disgusting and saddening. 

If I think about my illness and the last few years, for some parts it has been pretty visible, but what has been seen is most definitely not all of it.

I have my power wheelchair which screams disability and I have literally been lying in hospital for five of the last six years — very obvious stuff.

What’s not obvious, though, is the hidden tubes and bits and pieces under my clothes. The central line hidden under my skin, the blood pressure and heart rate readings I get when I’m about to lose consciousness, the multiple medications I take multiple times per day, the carers and nurses that come to help me every day, all of it and so much more which I choose not to go into. All invisible to a person on the street, to you on the Internet, and to everyone unless you know me pretty well or I tell you. 

In today’s society we are still so judgemental which makes having an invisible illness twice as hard. This is not written with the intention of a cry for pity or a woe is me, this is awareness. Awareness for the people with chronic illness and the thousands or millions with invisible illnesses every day, everywhere. 

I have long loved a quote that sums up this dilemma, so I will leave it with you to ponder over:

“Be kind. Always. For everyone you meet is fighting a battle you know nothing about.” 

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When My Son’s Doctors Viewed His Daily Symptoms as Acceptable

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Our 5-year-old son has a number of congenital “anomalies” as his doctors like to call them, from his brain and spine to his heart and intestines. His list of diagnoses can fill a page on the doctor’s printouts. However, the one thing that has troubled him the most is his gastrointestinal (GI) issues: vomiting and constipation.

My son was born with intestinal malrotation and had a Ladd’s procedure to help correct it when he was around 9-months-old. At this point, he was constipated, underweight, not eating enough and vomited readily so a feeding tube was placed. 

Over the next two years, my son regularly vomited during his tube-fed meals. It was his norm. And his doctors agreed. Since his weight and height were proportionate, his vomiting wasn’t affecting his growth. In other words, daily vomiting was acceptable from his doctors’ standpoint. All of them. They didn’t seem concerned with his quality of life. They weren’t concerned with how his vomiting affected his aversion of food and lack of progress with eating. They weren’t concerned with his overall wellness. We, however, were frustrated, exhausted, and frankly, unhappy.

What do you do when all of your medical specialists are OK with something that is acceptable in the medical world but not OK in the wellness world? Since when did they stop coexisting? 

After guidance from a relative, we sought an alternative. I consulted over the phone with a holistic doctor who practices intuitive medicine. After three months and a few consultations with this holistic doctor, our son’s vomiting improved. Over the course of six to 12 months, his vomiting had significantly improved to the point where it happened only a couple of times every few months. When it came time to follow up with his gastroenterologist and other specialists, they didn’t care so much how it improved but that it just improved. That disappointed me. 

Yes, our son has abnormal intestines. It is not uncommon for him to have constipation or vomiting issues. Per the status quo. I don’t like status quo. I wish a lot of doctors didn’t like status quo, either! 

So I say to all you fellow status-quo-protocol parents, it’s OK to look beyond the medical world. It’s OK to look into other ways to help your child. But, most importantly, when you seek other methods, always keep your doctors in the know. You still want everyone to be a part of your child’s team, you’re just adding to the roster!

Lead photo source: Thinkstock Images

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When I Pressure Myself Not to 'Waste' a Bad Day of My Illness

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Sometimes I wake up with pain in my face and forehead like my skull is contracting. The running joke in my family is that an alien life-form in gestating in my brain and I’m experiencing Braxton Hicks contractions. It’ll pass. (Until the day the infant alien bursts forth.) Anyway, I woke up to false alien baby labor this morning.

The best thing for me to do on days like this is to stay in bed and watch some TV. Maybe take a shower or a bath at some point, since water always feels good. But no pressure. Just take it easy. Give my poor head a break because it’s clearly going through something. I don’t do what is best, though, because I am determined. I force myself out of bed. I make to-do lists — multiple lists of things I have to get done today, or else. Never mind that I can barely get through writing the list. I stare into space trying to think of the word for those little sticks with the soft ends that clean your ears… what are those things? I know I know this. What’s the…?

When I look down at my phone it’s been 15 minutes, I’ve written three items, and I have no idea what those stupid cardboard fluffy sticks are called but I know I need to buy some of them. The two other items on my list are “read everything on each syllabus for my classes” and “write every paper due this semester.” Not really, but it might as well be that unnecessarily ambitious.

Going to the store like this is a bad idea. I’ve done it before. I survived. But it’s not a pleasant experience. I am Dory and I can’t remember that important thing. I make a plan in my head: go to toiletries, then grocery, then leave. But I forget it as soon as I’m in amongst the people and noise and choices. So many choices. Why are there four different kinds of sticks with cottony stuff? That’s too many. And my skull starts to constrict in a wave of pain and I don’t care about Q-tips. Ah, Q-tips! They’re called Q-tips. Anyway, I don’t want Q-tips. I don’t want to be in the store. I want to go home and climb into bed. Why am I out of bed anyway? Whose idiotic idea was this?

“Do you need any help?” a shelf stocker asks me, which is unusual because the staff in this store are not particularly helpful generally. But the stocker seems amused by me. That’s when I realize I have been in this aisle for 20 minutes. Twenty minutes looking at Q-tips. So I left the store without buying anything.

My bookbag in the front seat reminds me that I’m supposed to get stuff done today, but it’s not going to happen. I know that now. My determination is broken. So I drive home mad. I’m mad at myself for not being able to pick between four kinds of Q-tips. Or finish a simple to-do list. Or work on an actually important assignment. Or write a blog post about having a chronic illness.

I’m mad at myself for not being able to manage better, even though this is only one day and I’ve gone a couple weeks without wasting an entire day in bed. I’m mad that any day is wasted. I’m trying to make up time here! I have to use every day. I have to finish to-do lists.

But by the time I get into bed, I’m too exhausted and my pillows are too comfy for me to be mad anymore. I’m pretty sure the alien baby has changed positions because now my skull is threatening to split open at my temple. So I can’t think about a paper or write a post or remember to eat today.

Tomorrow I won’t be mad at myself for today. I’ll be a little frustrated by the additional work I have to do. And embarrassed about that whole Q-tip fiasco. But I won’t be mad. Because a bad day is a bad day. I’ve been through bad weeks and bad months and bad years. I came out the other side of a bad decade.

Bad days are days I don’t get back. That’s true and it sucks. Nothing gets done (except parts of this blog post). I don’t see my friends or make new connections. Occasionally I miss deadlines and the type-A side of me dies a thousand deaths in agony. But mostly the world goes ’round and I binge an entire series on Netflix (only actually watching some of the episodes because the light from laptop screens is refracted evil). And right now, in a moment of rational clarity, I know bad days are not my fault. I can’t control them. I avoid my triggers, but they’ll happen anyway. So what’s the point of being mad at me? It’s just mean. I’m trying my best here.

I know I won’t remember this revelation the next time I wake up feeling like my cranium is being squeezed from the outside while stretching on the inside. I’ll worry I’m going to waste a whole day again. I’ll convince myself that everything needs to be done and it has to be done today. So next time, all I have to do is read this post, try not to roll my eyes — which will hurt like hell — and surrender. It’s just one day.

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To the Friend of Someone Who Recently Became Chronically Ill

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Becoming sick is never easy; whether it’s something temporary like a cold or something chronic, it sucks to be sick. When we get sick, friends are usually the ones who keep us going. Bringing over soup or just sending a “get well soon” card can really boost the spirits. But when we don’t “get well soon,” tensions start to form for some of those friendships. Friends can sometimes probe, “Why aren’t you getting better? Aren’t you over that yet? Can’t the doctors just give you something?” Some people are less willing to keep giving their support when the illness doesn’t go away. So I am writing to the friends of anyone who has just become chronically ill. A friend who you met when they were healthy, but maybe isn’t that way anymore.  

When someone you love doesn’t get better, it can be hard, to say the least. Those closest to us aren’t always easily fooled by a quick “I’m fine.” Our closest friends see through this — they see how sick we really are, how much pain it causes us daily and the struggle of it. Sometimes this pushes friends away. Some people for whatever reason remove their support when things get tough without a clear sign it can get better again. It’s hard to see someone you care about go through something like chronic illness.

It may seem easier to “wait it out” and tell yourself that you will go support them once they are well, to assume this is just a blip in the friendship. Sometimes you tell yourself that you should leave them to deal with it, that you don’t want to add to their stress or maybe you just don’t know how to help or even talk about what has happened. To these friends I say that not everyone gets better. Sometimes it’s more than just a cold. Sometimes being ill becomes a reality for daily life. But when you avoid us for whatever reason, we notice. We notice if you just aren’t there in the same way, or sometimes at all, once we get sick. We notice when it started and start to blame ourselves. We worry about what we could have done to chase you away and trudge on through this illness alone without your much-needed support.

It’s hard to go through chronic illness, but it’s even harder without your friends. Nothing is worse than leaving doctor’s offices, consultations and even waking up after surgery with no one to talk to. After going through all these things for the first time, you want someone to talk to. You may feel you don’t know enough about what we are going through to help, but in the beginning you know about as much as we do.

So to the friend of someone who has recently become chronically ill I give the following advice: stay. Chronic and incurable are not the same as terminal. We are still here, living, breathing, trying to cope and have as normal a life as possible. Things aren’t as different now as they seem. Sure your friend’s life has just taken an unexpected turn, but that’s no reason to leave or shy away. If you don’t know how to help, ask. It is always OK to ask what your friend needs, what to do and how to talk about their illness. They are still the same person and you can still talk and laugh like you always do.

Chronic illness isn’t the end of life and its joys, so please don’t let it be the end of friendship.

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