I feed my baby from a tube with a syringe. Sometimes.

And sometimes I feed her from a bottle.

I used to feed her straight from the breast.

I’ve used breast milk straight from the boob. I’ve used breast milk pumped. I’ve used regular formula from the grocery shelf. I’ve used elemental formula. I now use organic, goats milk formula.

All forms of feeding.

All kinds of milk.

I’ve learned one thing from it all and it all amounts to the same: Baby needs to be fed.

That’s it.

 

We get so wrapped up in methods and rules and ideas and points of view — even in the simplest act of feeding a baby. We might think we know it all. We might think we have all the right ideas and all the right ways. My ways are best. My ways matter most. I am right. Pride. Pride. Pride.

Is it really about our opinions? Since when did it become about us? All along it has been, and should be, about the baby and our baby’s nourishment to survive — however that nourishment comes about and however it is needed.

Without my breast, without my pump, without my bottle, without my formula, without my tube, my tiny baby would not have received the nourishment she needed. Take away any one of those forms of feeding and she might not even be here today.

Imagine that.

All forms of feeding — I needed them all for my baby to thrive. Not one way was right, not one way was the answer to all.

Fed is Best.

Love is Best.

Follow this journey at A Beautiful Alarm.

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I used to be intrigued by mysteries. Until I became one.

Three years on and numerous blood tests, three endocrinologists, three ultrasounds, three functional medicine treatment plans, two MRIs, one colonoscopy, one gastroscopy, one functional doctor, one kinesiologist, one acupuncturist, one psychiatrist, one reiki healer and countless medications/supplements/GP appointments later, I am over the mystery that is my health problems. I want a label. I want someone to say this is what is wrong with you and this is how we fix it.

 

I have accepted this is probably not going to happen. My health issues lurk in the grey areas between conditions – endocrine, anxiety and gastrointestinal problems have all combined, in a chicken and the egg situation where they cannot figure out the root cause. There is no neat category to place me in, no tried and tested treatment to recommend.

“So, what exactly do you have?” is a question I dread. It triggers a long, rambling explanation that generally ends with “I don’t know.” Treatment plans consist of “We could try this…” and “I’m hopeful this might…” No promises. No explanations. No guarantees. But there is hope.

Believe me, this is an improvement. There was a long time where doctor after doctor would look at me, some indifferently, others pityingly, and say, “I’m sorry, but I don’t know what’s wrong with you,” or “I feel bad for you, but there’s nothing I can do.” As long as there’s a chance something can help, I will keep fighting to find an answer.

Some of the side effects of my illness fall into the “indefinable” category as well. A broken metabolism, severe reactions to FODMAP foods and several strict nutritional plans combined with anxiety and poor body image to trigger disordered eating. Even my food problems cannot be labeled. I don’t fit into any one set of criteria – I have a fear of eating “unhealthy” foods, but I do also have a medical condition that is triggered by many foods. I’m scared of gaining weight but I do gain weight quickly and it is almost impossible for me to lose it. I eat, but I am fixated on eating the “right” quantities, scared equally of eating too little (impacting my chance of recovery) and eating too much (and gaining weight) or eating the “wrong” type of food and affecting my health even more. It’s an exhausting mental tightrope I struggle to navigate.

Labels make things clearer. It is hard fighting an enemy you do not know – like trying to strike at shadows. There are so many times I’ve wished for the simplicity of a diagnosis, even if that diagnosis would bring a whole new set of battles to fight.

It is hard wading through the murky depths of being undiagnosed. Yet it is not without hope. It is about finding people not afraid to take the uncharted path with you. It can be difficult, but they do exist. It is perhaps an endocrinologist willing to think outside the box, a therapist who can help you deal with the psychological impact of chronic illness or a dietician who can help you to slowly, painfully, rebuild a healthy relationship with food. Friends and family who stay with you, holding your hand as you stumble through the darkness, arms reaching out, hoping for some answers or a solution. I know I am lucky to have found these things, even if it took years of searching and dead ends. I do not take them for granted.

Being undiagnosed is complicated, but it is not hopeless. It can be terrifying, and isolating and frustrating. Just remember, you are not alone. You can get through this. The path may seem to be in total darkness now, but there will be patches of light.

While I admit when I used to imagine being unique this wasn’t exactly what I had in mind, I’m determined that even if I can’t explain the mystery of my illness, it will not stop me from finding a solution. My illness may not be identifiable, but it is not my identity.

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Thinkstock photo via Tetyana Rusanova.


In a few weeks my beautiful first-born child will start school.

My precious boy.

I’ve had a knot in my stomach for months just thinking about it.

I have lots of worries about Brody starting school. No doubt similar to other parents out there walking a similar path to ours. When your child has a learning disability, can’t talk, lacks danger awareness and has medical conditions, lots of worst case scenarios can play out in your mind when you think about trusting them in the care of other people. It’s impossible for me not to worry about “what ifs.”

But right now, the thing that is at the forefront of my mind — because it’s the first thing we’ll encounter on this new journey — is the school taxi.

And right now, I hate the thought of it.

Trusting someone else to take my son to school.

Instead of me.

Trusting someone else to drive carefully with him in the back.

Instead of me.

Trusting someone else to make sure he is safely in his seat.

Instead of me.

Trusting someone else to know how to administer emergency medication.

Instead of me.

And trusting someone else to be a welcoming face for Brody in the morning and then waiting for him when school finishes.

Instead of me.

His mum.

 

It’s all about trust and acceptance really, isn’t it? And that’s something some of us continually have to get our head around when parenting a child with disabilities. Because our children are vulnerable. They need more help. And some may struggle to communicate how they feel, as well as what they want and need.

Watching Brody disappear into a stranger’s car is something I dread. It’s going to be hard. Really hard. And I’m not really sure anyone understands that, except those who can relate.

Knowing he won’t understand why or where he is going — at least until it becomes a familiar routine — makes me feel sad and helpless. The mere thought that he could possibly find this upsetting is unbearable.

So I’m hoping he will take it all in stride and be OK. And that maybe, eventually, he might enjoy the ride to and from school. Lots of parents have reassured me their own children do.

I’m hoping this is one of those things that is much harder for parents. But I suppose it will become our norm. Eventually.

Despite being overwhelmed with feelings of fear, mixed with hideous mum guilt and admittedly some sadness, I know that school will be good for Brody. And I’m sure that the escort and taxi driver will take good care of him. I’m sure they’ll become part of his new routine. I’m sure I’ll maybe even one day be glad of the taxi on cold winter mornings (once I get over the fear of someone else driving him in various weather conditions, of course).

The school taxi will be good for us. Not only because I won’t be able to physically manage to take him to school in another village when his sister starts school, but because it’s a step forward in his independence. And that is good for him.

My beautiful boy.

Follow this journey at: Brody, Me & GDD.

A version of this post appeared on Firefly Community.

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I’ve sometimes heard others in the chronic illness community describe themselves as “professional patients” because simply keeping up with all of their doctor appointments, treatments and health problems in general has become their full-time job. And some might scoff at that idea, especially those who still work despite their chronic conditions. But chronic illness certainly impacts different people differently.

 

I have never considered myself to be a “professional patient;” I prefer to think of myself as a housewife who happens to be chronically ill – although more often than not I think I’m a chronically ill person who happens to be a housewife. Either way, after some new symptoms decided to pop up recently, sending me through the diagnostic process all over again in search of answers, I began to think about why a chronically ill person might consider being a patient to be equivalent to having a job.

I think about people like my husband, who is generally quite healthy. He goes to the doctor once a year for a checkup, and he might go once or twice during the year if he gets the flu or some other bug.  For him a doctor appointment usually means a prescription for antibiotics, and he’ll be back to feeling well within the week.

I, on the other hand, have had more doctor visits in the past year than I can even keep track of. And I generally end up feeling like I’m just a medical mystery. I think many in the chronic illness community can relate, and for those of you who are not, I thought perhaps giving a glimpse into the life of a chronically ill person might help to explain why some consider simply taking care of their health to be their full-time job. And honestly, when you’re exhausted and sick, sometimes it’s really all you can do!

I started trying to tally up the tests I’ve had done since I became chronically ill, and it’s hard to decide a starting point as many of my symptoms showed up when I was a kid. But, I’ll use seven years ago as a starting point, as it seemed like the beginning of some of the more serious, or at least more constant, health problems I’ve had.

To the best I can remember, I’ve had:

  • Five EKGs
  • Five vaginal ultrasounds
  • Four sets of chest x-rays
  • Two ultrasounds of my abdomen
  • Two sets of back x-rays
  • Two MRIs
  • Two CAT scans
  • Two endoscopies
  • Two ER visits
  • One ultrasound of my leg
  • One colonoscopy
  • One surgery to have my gallbladder removed
  • One 24-hour halter monitor
  • Several rounds of physical therapy
  • And more blood tests than I can count!

And I’m sure there are more tests that belong on the list, but that’s all I can remember.

I can’t begin to count how many doctor visits I’ve had during this time. But I’ve been tallying up doctors and I’ve developed quite a list!

I’ve seen a:

  • Primary care doctor (and actually ended up switching doctors twice during this time)
  • Surgeon
  • Rheumatologist
  • OB/GYN
  • Fertility specialist (who deals with polycystic ovary syndrome and endometriosis)
  • Gastroenterologist
  • Neurosurgeon
  • Cardiologist
  • Endocrinologist

Within the last three weeks, I’ve had three doctor appointments, two sets of blood work, an EKG, chest x-rays and a halter monitor. This is certainly not my normal schedule (at one point I only had to follow up with my various doctors every few months). However, every time new symptoms emerge it can lead to new doctors, more tests and lots more waiting.

Although I wouldn’t really qualify myself as a professional patient, I think it can be hard for some to understand just how much time and limited energy we often have to spend at doctor appointments or on getting various tests done.

Over the past seven years, I’ve been through so many tests, so many appointments and spent so much time searching for answers. Sometimes I feel I’m just stacking up a list of diagnoses, but I need to figure out what is going on before I can decide how to treat it. Being chronically sick is downright exhausting! And maybe after further consideration I should really say I am quite the professional patient and medical researcher!

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Thinkstock photo via berdsigns.


There is no bigger relief out there than a person with a chronic illness receiving a diagnosis.

Some may think this sounds…odd. Why would receiving a diagnosis be considered a good thing? How is receiving a diagnosis at all relieving? Isn’t it terrible to know you have a lifelong, incurable disease?

Yes, and no at the same time.

 

Let me explain: years pass by of feeling sick with countless doctors appointments, blood work with negative results and no answers. It gets exhausting. Trying and tying. Seeing this doctor and that doctor. Taking different medications or supplements. Getting test after test done. And still, despite all of these efforts and time spent towards you trying to figure out this puzzle, you feel as though you are not any closer to answers as you were when you started your quest.

So when a doctor comes along that finds this missing puzzle piece, it is a huge relief. It almost feels like a giant weight has been lifted. Because, yes, you have a chronic illness that waxes and wanes over time, but, at least you know what is wrong. At least now you can treat the illness to help your symptoms. At least now you can have that peace of mind knowing you aren’t “crazy” or making the whole thing up! Which, by the way, is a huge fear of mine.

But it is never that simple. Once one doctor figures it out, another doctor thinks they have the answers and the other doctor is wrong. The doctors suspect you have this illness, but the results come back negative. Now you feel as though you are back to square one.

That is how I feel.

This time a year ago, I felt a huge relief. The unknown of the six weeks I was waiting for the results from my muscle biopsy were weighing on me every second of every day. Until that day when I heard the words…”We know why you’re feeling this way, and we can treat it so you start to feel better.” It was music to my ears! I finally had a concrete answer for all I was feeling and all I was going through.

But what happens when the treatment methods suggested don’t work? You get a second opinion. What happens when this second opinion questions the original doctor’s diagnosis? OK, you undergo their tests. What happens if results conflict, and now, you are no longer sure if the main diagnosis you have had for a year is even the right one? What happens when the doctors disagree? What now?

It is a horrible feeling to be in limbo. It is a horrible feeling to be in the dark, to be in the unknown. Especially after you think you have all of the answers! And if you are in this situation, I am very sorry. I know how awful it feels. But do take some comfort in the fact that you are not alone in this stage. In fact, I think it is very normal for chronic illness warriors to experience this during some point of their journey.

This is where we need to practice patience. We need to practice acceptance. We need to focus on being in the here and now, and know all answers come in good time, and at the right time. We are eager to have all of the answers. We are tired of fighting this fight and battling our health every day. But if we just keep holding on, our answers will come.

Don’t give up. Together, we can get through this. Together, we can beat this. Don’t underestimate the power of the chronic illness community; it has given me strength and hope when I needed it the most. And my hope for all of you reading this is that this community can provide you with that same promise and fortitude as it did me.

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Thinkstock photo via llhedgehogll.


 

Try as I might to avoid them, situations often crop up when I have to explain my 4-year-old, nearly 5, has a medical condition. Usually it’s to cancel a playdate or explain why I’ve forgotten to do something. Sometimes it’s when we’re meeting people who will need to know, like babysitters or teachers. The conversation goes something like this:

“My son has a periodic fever syndrome. That’s an autoinflammatory disease.”

“Autoimmune?”

“No, autoinflammatory. It deals with the innate immune system rather than the acquired immune system.”

“What’s it called?”

“I don’t know. He’s undiagnosed.”

“Maybe it’s just a virus.”

“It’s definitely not a virus.”

“You know, my cousin has something like that…”

“Maybe, but autoinflammatory diseases are quite rare — like one in a million people might have his condition.”

“Have you tried eliminating gluten/dairy/everything from his diet?”

“No.”

“I’m sure they’ll figure it out.”

“I really hope so.”

“But he’ll get better, right?”

“We don’t know yet.”

And sometimes, silence. Sometimes questions: “What does that look like for him?” Sometimes a great empathetic remark: “I’m sorry. That must be difficult.”

I don’t really mind any of the responses. Except maybe for the one about viruses. And diet. Those get old pretty quickly. In fact, I usually like it when someone asks thoughtful questions — it tells me they’re trying to understand our situation. After all, it’s hard to deal with the unknown and therefore completely normal to want to label and categorize things. That’s how we make sense of life: we have a framework and we organize our worldview within it.

 

Unfortunately, sometimes things don’t fit within the existing paradigm, and people — including doctors, by the way — really struggle with things that don’t fit our preconceived ideas. Believe me, I’d love to fit my life into the framework I envisioned for our family — parenting a child with a rare disease was not part of the plan. But like so many aspects of parenting, the unexpected has taken my life by storm and shattered the delicate shape I imagined.

We know my son has a rare disease, but we don’t know exactly which one it is. We’ve ruled out a bunch of things, everything from Lyme disease and leukemia to strep throat and cat scratch fever. That left us with autoinflammatory as a category, and initially we thought it might be periodic fever adenitis pharyngitis aphthous ulcer (PFAPA) syndrome…but then his symptoms changed. A rash here, some eye swelling there, throw in random flares triggered by everything from illness to excitement, and now we don’t know what’s going on.

In the early months, I didn’t talk much about my son’s health issues. I didn’t know what to say; his symptoms didn’t fit in the catalogue of illnesses my friends and family members knew about — and my mom is a retired nurse. Heck, they barely fit in the catalogue our pediatrician knew about. I didn’t respond to comments like the ones above because I didn’t know how to articulate what was happening, both in terms of his medical symptoms and the impact his condition was having on our lives. Everything felt overwhelming and upside down, and I clung to the idea that once we had a diagnosis, our lives might return to normal and fit inside the nice, neat plan I’d had for all of us.

For a while, I pinned all my hopes on genetic testing — this would definitely give us an answer. I believed it would! I battled with the insurance company, and when we lost, I persuaded our son’s specialist to work with a genetics company we could afford to pay for out of pocket. Surely this would give us an answer, right? We sent off the blood sample and I counted down the days until the results were due in. The other mothers in our online support group tried to warn me: be prepared for uncertainty.

But I wasn’t prepared. I’d hardly cried at all during the diagnostic process for my son — not when he was admitted to the hospital in respiratory distress, not when his temperature repeatedly hit 106F and kept climbing, not when I had to carry him because he couldn’t walk. When the genetics came back negative, though, I cried. I cried big, fat, salty tears of misery and frustration and grief.

If we didn’t know what was wrong with him, how could we help him? If his illness didn’t have a name, could I convince other people it existed? What was the point of all the tests and trips to the doctor’s office if it ended with me at home, comforting my aching child, clutching a useless bottle of ibuprofen and a thermometer the nurses kept telling me must be broken?

In my mind, I stood at the edge of the Grand Canyon, the wind whipping past me as I stared into the abyss. Without a diagnosis, I couldn’t see a way forward. For months, I felt lost and powerless, but over time, I built a new framework for our lives that incorporates our new reality.

Now, I speak more openly about my son’s medical condition; acknowledging his illness with family and friends validates our experience. We’ve tried two common treatments for autoinflammatory diseases and while neither one fully controls his symptoms, one does help from time to time. Some doctors try to dismiss my son’s symptoms as “just a virus,” since it doesn’t have a label. I don’t allow that. Other doctors feel the need to label it something, so they choose the mildest of the autoinflammatory bunch and stick that on his medical notes. Regardless, I’ve rebuilt my courage and learned to advocate for my son. I read and ask questions and I won’t stop doing either of those things until we get some answers — even if I may never get the answer.

I’d love to end on a positive note and tell you I’ve found a way to accept the unknown, to move beyond the need for a diagnosis, but I haven’t. I still want a label and a solution to my son’s condition. Sometimes I stay up late into the night when everyone else is asleep and read complex medical articles I only partially understand. In the blue light from my laptop screen, I sift through his symptoms, looking for a clue I might have missed. My inability to quit searching is the opposite from my husband, he’s much more of a take-life-as-it-comes kind of person.

But maybe this human need to pin things down is part of what drives my ability to advocate for him. On another level, perhaps the thirst for knowledge and understanding also drives medical research and innovation. Maybe one day we’ll be able to pick up the shattered pieces of our framework for categorizing illness, the scraps of our ramshackle understanding of the human body, and put together a better paradigm that includes patients like my son.

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Thinkstock image by amoklv

 

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