I’m Not Immortal

It’s not often that I have health concerns – I count myself very lucky that I am a relatively healthy person (aside from that pesky genetic mutation).  I don’t often have to go to my family physician with any sorts of concerns other than my regular annual check up.  I make my rounds through my list of specialists each year and when I’m pregnant it all ramps up quite a bit as a precaution – so it may seem to the outside world that I’ve got a lot going on but overall I’m happy and healthy.

A couple months ago I started having some concerning symptoms – pain, intermittent nausea, constipation, feelings of fullness, lack of appetite and fatigue.  My closest nurse friends shouted from the roof tops – go the your DOC! I promised and promised and re-promised but I’m really good at ignoring and putting things aside.  I learned to live with the discomfort and didn’t really pay it much attention, often I’d think “hmm… it seems to have fixed itself” and I kid you not, each time I thought that I’d get the now familiar jab to my abdomen – a reminder that something is still not quite right.  Then about a month ago my body sent me an alarm that can’t be shoved to the side or ignored – unbelievable constant heartburn.  That was my final straw to finally go and see my physician.

I work in two different places – both in Oncology and so I realize my view of the world is very skewed yet with every new diagnosis I see I think to myself – a few days ago they thought they were healthy and now their world is turned upside down.  It’s a big joke in the Oncology nursing world that we all think we have cancer at the slightest headache, but it really is impossible to get that out of your head when sometimes that’s all it takes for someone to come in to their Dr and be diagnosed.  I don’t actually think I have cancer but historically in my life I get ominous feelings – a feeling of knowing something isn’t quite right before I get an actual diagnosis.  My infertility and PCOS is a prime example – I didn’t need a full work up to know exactly what was going on and I wasn’t surprised or shocked at the diagnosis.  It was the same with my Marfan’s diagnosis – I got the phone call and a sympathetic genetic counsellor on the other end saying “I’m sorry, it’s come back positive,” cheerily I said “I thought it would! Thanks for letting me know!” She seemed taken aback – “you don’t sound upset or surprised” and I replied “Well, I’ve been assuming that’s the correct diagnosis most of my life so it’s actually nice to finally have a confirmation.”

This week my current symptoms have been screaming at me – I can’t tell you if they are truly worse or if my final acknowledgement of them have made them more real to me.   This time is a bit different than every other medical issue I’ve had – I have not a clue what’s going on and my only assumption is the worst one.  My Dr is quite stumped as well and can only offer that maybe it’s a mechanical bowel issue – I’m almost certain that it’s not but I’m willing to test out that theory.  My blood work is almost perfect – but that’s not very reassuring for me, I almost wish it wasn’t so at least we’d have a direction.  We’ve talked about lifestyle and diet – I thought at the beginning it was stress related due to my work situation, I changed that up and have no work or home related stress at all – symptoms persisted.  I know my diet isn’t perfect but compared to the vast majority of the North American population it’s pretty close to being flawless, I make an effort to drink a lot of water, eat lots of fresh fruits and vegetables, avoid processed foods of any kind, no refined sugar of any kind.  Of course I treat myself here and there and maybe I just need to be more strict – so in hopes of figuring it all out I’m going to once again get my diet to a strict gluten, sugar, dairy free diet, maybe that’ll help.

It’s really rare for me to be concerned or worried about anything health related – even cardiac wise, which is my biggest risk, I have a carefree attitude but this time around I just can’t shake it.  I think for the most part as I’ve gotten older, and as I have started a family, I realize that I’m not a superhero that can survive everything.  I am but a mere mortal at the mercy of whatever gets thrown my way.

I don’t mean to be so negative and really I don’t think I have cancer, and to be honest I just needed to get this all out as some stress release.  I’m just ready to start feeling well again and the more days that pass the farther and farther away that feeling gets.  Right now my norm is naps in the day and sleeping from 730pm to 7 am.  I used to be able to clean the house, do the laundry and prepare the food all in a day, recently I can only do a portion of a couple of those things throughout the day and the rest of my day is spent resting.  I’ve taken for granted my health in the past and today I am thankful for an incredible health care system (even a broken one) which includes an amazing GP who truly listens and investigates concerns.

Life Stresses

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This summer truly has been a struggle for us in the Monteiro household – and last week I promised to give you the low down.  I’ll start in July the last time my parents were here to watch Ezekiel.

Ezekiel has always been a great napper, right from day 1 he literally would only wake up to eat.  He very gradually increased his awake time but even at 8 months old he could only stand to be awake for 2-3 hours at a time.  When I went back to work he went down to one nap because that was easiest with the dayhome.  Even when he’s tired he’s mostly pleasant but certainly you can tell when he’s exhausted.  Everyday he would come home exhausted and everyday I chalked it up to all the playing and stimulation he got at the dayhome.  When my parents were here it gave me an opportunity to notice that he was a lot more tired than I had thought.  For 10 days he took naps that were consistently 4-5 hours long.  I know, who worries or complains about their child sleeping?! The thing is he was also sleeping for 12 hours at night for a total of 16-17 hours of sleep per day and was still looking and sometimes acting very tired.

Thankfully I work with my pediatrician and so on the Sunday after this had happened for 10 days I asked what he thought – he suggested bringing him in for some blood work to rule anything out but wasn’t too concerned at the time.  We did the blood work but didn’t hear anything back.

The mom part of me thought “Great, there was nothing worrisome in the blood work so I can just let him sleep and not worry about it.”

The nurse part of me thought, “I need numbers and concrete evidence that everything is ok.”

The next time I saw our paediatrician at work I asked if he had seen it – he hadn’t as it hadn’t been flagged for his review.

Let me take a second to do a bit of teaching – you are responsible for your health (and your children’s).  You are the advocate and it is your responsibility to follow up on everything.  So many people assume that everything is fine when they don’t hear back from doctor’s offices, but the thing is those doctors care for a large amount of patients and their staff are human.  Both of those things means: 1) mistakes are going to happen and 2) there’s no way to follow up on every single thing that is talked about unless that patient brings it to follow up.  My suggestion (I’m talking to myself as well) is that if you leave a Dr’s office with a task (get blood work, or go for tests, or take this medicine for such and such time and see how things are ) you need to make sure you book an appointment to follow up on that task and not assume that it’s going to all be taken care of. In this situation my paediatrician knows that I can’t always afford to take time off work and since we often see each other on the weekends at work that we could just follow up that way.  In the future I’ll always just suck it up and book the follow up.

Ok now I’m off that soap box.

He promptly went to take a look and then came back and pulled me out of a patients room (that’s a good way to cause a heart attack in a mother).  Ezekiel’s blood work looks a little funny – his hemoglobin is low, and his iron is half of the lowest normal.  So there’s the reason for the fatigue and lack of energy – however it goes a bit farther than that.  Based on the rest of the blood work that was done it is very suspicious of a genetic blood disorder called Thalassemia.

IF that is the case I doubt that he would have a severe form of it and at first I was feeling not really stressed about it.  However, the longer the time goes between then and knowing for certain the more stressed I am feeling about it – probably because that’s not the only thing going on with us.

Let’s move on to Carlos.  Carlos is a student and is very committed to doing well in school – this has resulted in a lot of stress for him and also a lot of anxiety.  Two weeks ago he was writing final exams for the summer semester and was complaining of a persistent headache.  I (as the good nurse and wife that I am) brushed it off and chalked it up to being tired and anxious.  Thankfully Carlos was doing some google research of his own and suggested that he take his blood pressure.  We’ve known that he’s had slightly elevated blood pressures in the past – but at that point he’d only had his blood pressure taken a hand full of times in Dr’s offices where he is always anxious.  Anyways, I sent him to the nearest Shopper’s Drugmart to use their machine by the pharmacy.  He came home and took Ezekiel upstairs to have a bath and get ready for bed, I didn’t ask at that point what his blood pressure was because I really wasn’t too concerned.  When I went upstairs he casually showed me the picture of his blood pressure reading – 198/125.  I nearly had a heart attack at that point thinking of the dangers of a blood pressure that high.  I immediately put Ezekiel to bed and asked our roommate to listen for him.  We went to Emergency – which was a big waste of time as they did nothing for him – that’s another rant in and of itself that I won’t get into.  The next day I took him to our family doc who is phenomenal and we started him on some blood pressure medication.  That was a week and a half ago and we’ve been diligent in tracking his blood pressure since then.  It hasn’t gone down to normal but I think we are on the right track.

Last week I was really feeling the stress of both of those things and on top of that I had been sick for the 4 weeks prior to that and am just starting to feel like I’m getting back on track health wise.

In the midst of all of this I have realized that even when I mentally don’t feel stressed – like in these situations, physically my body is responding to the stress.  People always talk about feeling stressed and I always assumed that applied to mentally feeling the stress.  I’m learning that mentally I rarely feel that stressed, I can rationalize my way through most situations and that contributes to not feeling a lot of mental stress.  I’m thankful for that coping mechanism because when I do mentally feel stressed I shut down and can’t motivate myself to do anything.  However stress is felt in so many ways other than mentally.  I can tell that my body is continually fighting off sickness because I’m physically feeling the stress of our current health situation. Eventually it has boiled over to this general feeling of anxiety that I just can’t pin point – I am NOT an anxious person at all but lately I’ll have a day or two where I just can’t seem to fight off this feeling of a bit of anxiety.  I’m so thankful I work with amazing people who continually help me talk through each situation which helps me forget about it and move on.  Later on I’ll talk about some natural strategies I’m using to help my body deal with the stress.  Yesterday I got thrown another curve ball that’s piled on the stress so I’m going to be trying very diligently to combat the stress with some natural remedies.

I’m sorry this turned into a book! Thanks for reading this far.  I’m so glad for great healthcare and amazing doctors who look after my family.