our anniversary

We're having a good day, today. Just chillin'. Even the weather has decided to cooperate, and after days of hot-hot-hot, it's raining. As I write, I listen to the rain outside. I love that smell - though it's masked by some idiot-neighbour burning something. As usual, in our kampong.

When I get really ill, later-later lah, it might be wise to think about a nursing home, no? I say.

Chuan gives me a funny look - like I'm talking out of my arse, again.

I can look after you, he says, flexing his arm. Ada muscles!

Ok.

We both laugh.

But, if I need to be in hospital, that's where I will go.

I say that I don't have any need to die in my own bed, in my own home, or whatever else it is people are said to say about their dying.

Bring on the oxygen, and the morphine, I say. Maybe a nice mix of both, in a strawberry tequila, even!

34 years.

Yes, I did one thing right: I married the right man.

why I write

A few months after I was diagnosed with IPAH, I started a journal. That's its cover, by the way,  worked in watercolour. Sunflowers dancing in the sun.

It was my daughter who suggested I write, and I remember thinking it was a good idea. To quell the demons that ride the carousels in my mind.

And it worked, as I knew it would. I have always found catharsis with writing.

What I disliked about it, though, was the actual act of writing: The picking up of pen, to put to paper, and the forming of word after word after word. Tedium ad infinitum.

But, I am also trying to teach myself calligraphy. Isn't that writing?

Well, yes and no. Yes, it is writing. But no, it is more than that: It is an art. A dance of nib on paper. And oh, the joy of listening to the music I make while writing, then!

When I wrote in my journal, I found that my words on the line couldn't keep up with the ones in my brain.  And, as I tried to keep pace, my already-bad writing got even worse. Add to that the wrongly-spelt words, and the rubbish sentences that needed re-working . . .  returning to a blog was a no-brainer.

For me, thinking on the screen has been how I write, for years. My fingers oblige with the words, rattling over the keys, keeping pace with my thoughts. Happiness 😊 Thank you, mum, for insisting that I learn to touch-type when I was 17!

And, labels 💙

They're the other reason I love this medium. I can tag something, and know that I will be able to find it again easily, should I need it. I'd tried hi-lighting bits and pieces in my journal, and that worked. Sorta. But looking for something involved flip-flip-flipping through pages to find it. And, then, there's my writing to contend with: What exactly is that word . . . ?

So yup, a blog is a good idea.

For now, my blog is private. I share with just a few of you who already know about my diagnosis. The thought of everyone reading what I write, and feeling sorry for me . . . well, that brings me close to tears.

Actually, the thought of total strangers reading this blog sits easier with me than the thought of people I know, but dislike, reading it. I do realise that it is a tad vain to imagine thousands flocking to this page, and poring over my words! Hahahah. But one day, this may be open, and it may be true 😏

And one day, I will open this to the public. But not just yet. This is all still so new, and all still quite raw. There is so much I don't know, and even more that I am sure I do not want to know. I don't know if I will ever be ready for all that there is in store, for me.

Until I have come to terms with this, and all it means, this will be a blog for me and those I trust.

Eventually, I hope that I will be able to share my thoughts with others who are also living with PH. IPAH is very rare, and maybe someone will find some of this useful, or comforting. I don't know.

But, I myself keep away from blogs about PH. I am blind to the positive in what they write. I only see my future, and it scares me. So, I've decided that I'd rather not learn from them, and simply learn as I go along. From me. If that makes any sense!

My amorPHous journey is me, writing my own story, and taking each day as it comes.

bursting the bubble

I wrote this at 3 a.m. this morning.

I am filling up with air, and I am fit to burst!!!

It's been a while since the last time this happened, but it's happening now. As I shoved the last bit of chocolate in my mouth, I wondered if this would be in store. And it was. How fun to be right. NOT!

Just burped! Yay!

My stomach is distended, and it hurts. Right up to where my diaphragm must be, I think. I need to sit up straight, and pray it doesn't get worse. Soon, this distention will ease.

I just looked up the word 'distention' to check its spelling, and it exactly describes how this feels: 'the state of being distended, enlarged, swollen from internal pressure'. Yup. Hell on earth. 

This time around, it isn't that bad. It's bad, but I don't feel I'll die from the pain. I know it will ease. Though, this hasn't always been the case.

It has been worse! So bad, in fact, that after half an hour, I ask Chuan to take me to emergency. I cannot bear the pain. I think that something very wrong is happening inside me! We leave at around 5 in the morning, and it is black outside. I want to double up in pain, but I can't. It only makes the pain worse. Sit up straight, Pat!

We leave the girls in the patio, and we're off. The hospital is about 30 minutes away, but when you're in pain, that's a long, long time. That is far, far away.

Fifteen minutes into the journey, I can feel the distention easing. Is that really happening? It is! It is!!!

I tell Chuan, and in two minutes we're making a u-turn and heading home. I apologise and apologise, and Chuan says it's all right. It's not. I feel like a complete doofus.

As it did then, it is happening now: The pain is easing. I can feel my stomach relaxing. Another minty burp! Hahahah. Oh, don't be disgusted. Wait till you're all distended and hurting, and wanting to just jab your stomach with a knitting needle.

I'm feeling so much better now. Disflatyl rocks my world!!!

Oh, and one swig of Gaviscon, from my bedside table, as well. I always wake to a sour stomach, before it escalates to pain. If it's just a sour stomach - a bit of reflux - then, that swig works it's magic and I fall asleep again, easily.

This time, the swig didn't work.

This time, the culprit is chocolate. A little too much of Cadbury chocolate, with nuts. And some juicy  California raisins. I didn't eat the whole bar. I promise! But, still, I ate too much, didn't I?

It's not the chocolate, it's the milk. Or rather, the lactose in it.

It's the same with potato crisps - I've read that they contain lactose - and crisps set my stomach monsters off, too. I had too much crisps one night, and I remember sitting up, like this, a few hours later. Crippling crisps.

I'm feeling almost human, again. This time, it's taken about 15 minutes - from onset of pain, to chewing the disflatyl, to the easing of pain. Phew.

The first time this happened, I was at IJN. I'd eaten some cheesecake for dessert. Some is a relative term, isn't it? It could mean a few spoonfuls. It could also mean one-quarter of a huge baked pie! For me, it was a few spoonfuls of a mini tart. That I hadn't eaten alone!

Four hours later, I'm hoping that someone would take a brick to my head and end the pain.

You want to know the worst place to be in pain? In a hospital. I am so not joking.

You feel the pain coming on. You call the nurse, and ask for help. They'll get you something, they say. The pain gets worse. The pain gets worser still (worser is not a word? Who knew!) Your husband rubs your back, and does NOT say you shouldn't have eaten that cheesecake. He rings the bell for the nurse. She buzzes in, and says they've called the pharmacy, and they're waiting for the medicine to be sent up. We say, " Ahh . . . ." Meanwhile? Just continue groaning in pain, and wishing for death's release.

Let's recap:

Chocolate, potato crisps, cheesecake - I think the common denominators are too much carbohydrate, sugar, and lactose. To my mind, at least. And it's this, plus sildenafil that's the recipe for all this fun.

Now, the question remains: WHEN will I learn to not do this again?

Yes, that's pretty much the size of the bubble inside me. Cross my heat and hope to die.
But please don't stick a needle in my eye.
Stick it in my stomach!

Happy birthday

foxgloves

Foxglove contains chemicals from which the prescription medication digoxin (Lanoxin) is made. These chemicals can increase the strength of heart muscle contractions, change heart rate, and increase heart blood output.

my medicine chest

And medicine for my chest, as well! 😉

My used-to-be self only took one piece of Panadol when I had a headache . . . .

This is the medicine chest Florence Nightingale took to the Crimean War, I'm told.
It included a mix of medicines and herbal remedies: from bicarbonate of soda,
essence of ginger, to powdered rhubarb.

Here's a recap of what PH is:

Pulmonary hypertension is a rare, progressive lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size.

The most common symptoms of IPAH include:

• shortness of breath when physically active
• tiredness
• dizziness
• fainting
• swelling in the extremities, including legs and ankles
• chest pressure or pain
• racing pulse
• hoarseness - most likely due to the compression of the left recurrent laryngeal nerve between the normal aorta and dilated tense pulmonary artery (Ortner's syndrome)

To manage these symptoms, these are my must-takes:

Sildenafil

1/2 tablet, three times a day.

What it does:

Sildenafil is a vasodilator anti-hypertensive medication. It relaxes pulmonary smooth muscle cells, which leads to dilation of the pulmonary arteries. It also eases the pressure in the pulmonary arteries, helping with blood flow to the lungs. 

Sildenafil is also more commonly known as Viagra. 

Side effects:

• Nose bleeds
• Headache
• Upset stomach and heartburn
• Flushing of the skin
• Difficulty sleeping
• Worsening shortness of breath
• Nasal congestion

Digoxin

1/2 a tablet, in the morning.

What it does:

Derived from the foxglove plant, digoxin can improve symptoms by strengthening the heart muscle contractions, and slowing down the heart rate.

Side effects:

• Dizziness
• Changes in mood and mental alertness, including confusion, depression and lost interest in usual activities
• Anxiety
• Nausea, vomiting and diarrhea
• Headache
• Rash

Spironolactone and Frusemide

1/2 tablet, of each, in the morning.

Both are diuretics, and they serve to remove extra fluid from the tissues and bloodstream, which reduces swelling and makes breathing easier.

Side effects:

My two diuretics cancel each other out in the case of increasing/decreasing potassium levels - which is a side effect of diuretics.

But, their other side effects are:

• low sodium levels
• headache
• dizziness
• thirst
• increased blood sugar
• muscle cramps

Water

PH patients are instructed to restrict their total fluid intake to less than two liters per day. Reducing fluid intake helps prevent swelling and fluid retention. More importantly, it also helps prevent an increase in blood volume - easing the load on the heart.

Ezetimibe

1 tablet, at night

Ezetimibe is a drug that lowers plasma cholesterol levels. It acts by decreasing cholesterol absorption in the small intestine.

Side effects:

• numbness or tingly feeling
• mild stomach pain, diarrhea
• tired feeling
• headache
• dizziness
• depressed mood
• runny or stuffy nose, cold symptoms
• joint pain, or back pain

Seretide

1 puff in the morning, and 1 at night.

The inhaler has two medications that help prevent lung inflamation, and/or an asthma attack.

Side effects:

• Hoarseness
• Headache
• Soreness of the throat or tongue
• Muscle cramps
• Increase in heart rate

Avamys

1 puff in each nostril, in the morning

Since I have multiple allergies, I have been prescribed this to help ease these symptoms: stuffy, runny, or itchy nose; sneezing; and red, itchy, or watery eyes. Simply delightful!!!

But, here come the side effects:

• back pain
• cough
• fever
• nose irritation or pain
• nosebleeds
• sore throat
• stuffy nose

Disflatyl

1 tablet - to be chewed - whenever I need it.

This medication is used to ease the symptoms of gas build-up in the stomach - leading to discomfort and pain. Simethicone helps break up gas bubbles in the gut.

I've always had a somewhat delicate stomach. An avalanche of medicine poured into it, every day, doesn't help it any. So, it is a delicate balance of taking my meds, eating just enough to keep my stomach happy, and trying not to tip the balance and invite a gas build-up. Some days, it is easy-peasy. Other days, I think walking a tightrope in the Andes would be easier.

There really aren't any side effects for this, but there might be an allergic reaction:

rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing - none of which has happened to me. Fingers crossed!

in resting mode, today

easing the load

At the end of July, last year, my blood pressure was soaring. I finally gave up the fight, and began taking medication for it. Never mind that the medicines didn't quite work, and that they gave me a host of side-effects, and left me feeling miserable.

If you read about high blood pressure online, every article will say: Lose the weight, and lose the high blood pressure. I decided that that is what I was going to do: Lose the weight. At the time, I weighed 73.7 kg.

The technical term for that is fatso : especially for someone standing barely 5-foot-no-inches tall.

I went online and tried to find something that would work for me. There is so much information out there, and a lot of it pure drivel.

I'd already stopped eating wheat: I am allergic to it. Wheat makes my stomach ill. And, when there is wheat in my stomach, all the other food there doesn't get digested, and I get painful bloating. So, wheat-out was already in place.

I'd also extended to no-no's to carbohydrates, except for a bit of rice for lunch and dinner. Time to stop eating rice, as well.

Now, I eat only vegetables and meat. Occasionally, I may eat some rice. But, it's mostly veggies and meat.

Very little fruit.

No sugar.

I try not to eat sweet stuff, but I chocolate makes me melt. So, I often have some, after dinner, as a treat. I might eat a few grapes - frozen bullets, Chuan calls them - sometimes. If I am 'bad' at all, it's usually after dinner: When I might eat more sweets than I should. But, if I stuff myself silly, I pay the price: Bloating. Bloating is not fun.

Being on so many medications necessitates eating. I've to take medication three times a day, each time, I needing something in my stomach, for buffering.

The other thing I do is fast. It's called intermittent fasting, and for me, it goes like this: After dinner at night, (and, a little dessert), I stop eating. Until I wake up in the morning.  Then, I have about 400 mls of water. After a bit, it's time for my morning cup of coffee, with a little milk. no sugar.

I fast again - water is allowed - until lunch. Then, dinner.

No tea. No snacks.

And that is all there is to it. I am not usually hungry, and never starving. I might get a little hungry before lunch or dinner, but some water usually eases that until I sit at the table to eat. On days when I feel that there's a hole in my stomach, I may have a small piece of fruit. But, most days, water is enough. Especially if I'm doing my art, or reading. If I'm out, I seldom feel hungry until it's lunchtime. Just shows that if my mind is busy, my stomach shuts up!

Since 28 July 2016, I have lost 14.1 kg, weighing 59.6 kg when I last stepped on the scale.

I am happy with the weight-loss, and there is still some more to lose: in the belly area, especially. But, I'm sure it will happen slowly. I'll take my time.

note to self: the heart-rate factor

Resting seems to be my superpower! An old joke of mine, I know, but it helps me to laugh about how often in a day I need to just lie down, and rest! That's because I often feel tired. Sometimes, more tired than other times. And I never can tell the why of it all.

But, I've been having a look at my Fitbit history, and I have had a few insights. Fitbit tracks my steps. But, it also tracks my heart-rate. And although I thought there'd be a correlation between steps-taken and tiredness, Fitbit has helped me see more than that.

Some examples of readings from recent days:

  


 

  

What got me looking at the stats was this: On July 8, I ended the day feeling awful. My head ached, my body felt sore and my joints ached. And I was beyond tired. I was so sure I was going to get the flu, or something.

BUT, I had felt that way before. On days we'd gone out, and had a bit of a walkabout; on days when friends or family visited, and I was up and about . . . .

So, even though I felt so awful, I knew that I'd wake up on the next day and feel all right. And, I was right: I did feel better, but I was still a little hungover from the previous day.

What had caused this?

I checked my steps taken, and it hadn't even reached 3k, as you can see above. Pathetic. And my feeble goal is to hit at least 3,500 a day. (Btw, this has been upped from 3,000 which had been a tough call when I first got my Fitbit in November '16!)

What I didn't think to do was look at my heart rate. Which I did, this morning.

And then, I tracked it back, and found other days like this one.

My resting heart rate is now around 66, on average. It has come down from the high 80s since I was put on digoxin.

There are days when my heart rate sky-rockets, but the number of steps taken for those days remain low. Either I was sitting up more; or, doing something that didn't involve steps. Even slowly strolling around a mall increases my peak heart rate! Even then, the steps are usually only marginally more than I usually record.

In the evenings, or just before lunch - if I'm feeling all right - I'll have a bit of a walk. For about 10 minutes or so. Sometimes, longer. I'd record about 1,000 to 1,500 steps. If I look at my heart-rate chart on those days, there is a peak at those times. But, because I'm not over-doing it (whatever over-doing it might mean, I am still trying to find out!) I don't feel tired or washed out, at night.

I am trying to up my daily steps to 4k. I do hit it on some days, but most days, I don't. So, I've not revised my setting to say 4k steps. It is so demoralising for me to be unable to do it. As it is, not hitting my 3,500 steps kinda pisses me off. Often.

But, I have to keep telling myself that Fitbit ONLY records steps taken. On days that I spend doing my art, when I've been up and about doing stuff - but not necessarily walking about all over the place - those days record low step-readings.

The next time I feel gawd-awful, and like I'm going to get a fever, and be down with the flu - I'll remember to take a look at my heart-rate readings for that day! If it has climbed much, much higher than I am used to, I'll know that that's why: My body is tired from all that heart activity. I've pushed myself too much. All I need do is rest, and I will be fine tomorrow. That's my note-to-self.

And that's why resting still remains my superpower! :)

my blog name: amorPHous

Nice name, huh? Hahahaha.

A play on PH, of course: Pulmonary hypertension. Because I do have Pulmonary Hypertension. Or, more precisely, IPAH - idiopathic pulmonary arterial hypertension. What a mouthful. And how difficult to fully understand what it really means.

And I wanted something that would suggest the utter newness of it all; the not knowing where it will lead; the nothing-good it makes me feel.

It made me think of this word, and what it might mean:

o without clearly defined shape or form
o vague; ill-organised; unclassifiable
o lacking a structure or focus

So describes my life now perfectly!

Every day is something new. Something different. Sometimes, it is good. Sometimes, not-so-good. But always, it makes me stop and think about how much I do not know about it, at all.

I think 'amorphous' describes the limbo of my life quite brilliantly.

I cannot predict how things will be, and so I take it as it comes, and try to dance to the music each new day brings.

And here, I'll write my story . . . .