Christmas is almost here, and there are lots and lots of lovely images like this one, online, and it really does put one in a nice christmassy mood. Next year, I've promised myself that I will actually do something like this with my calligraphy nibs and inks and paints. Next year. Now, they're all snugly wrapped up for the big move!

Note to self: Stuff I need to tell my doctor, when I see him:

First: Every day, around 12 to 2 pm, I feel my feet begin to feel tight with edema. My left foot more than my right. Before this, they'd feel kinda biggish in the evening, after dinner. Around 7.30/8-ish. Now, it's moved up. Since it's after lunch, all I need do is sit with my feet raised, and it sorta eases. But, when evening comes around, they're 'tight' again. That's the best word I can find to describe how they feel: Tight. Because they seem to be pumped up with water, and the skin feels tight. I imagine that my toes look like big, fat, cocktail sausages, but they don't, actually. It just feels that way. If I press a finger into the flesh of my foot, it leaves a depression that takes a bit to spring back. That's edema, I'm told. Nice.

I am already on a diuretic, and I worry that it's dosage will be increased, OR that I will be put on another one, as well. I was on spironolactone before, but my potassium levels rose, so I had to go off it.

Second: After every meal, I feel nauseous. Isn't that just wonderful?! Hahahah. At first, I felt I must be eating too much, so I eased back on the quantity of food at a meal. No change. Nausea. Today, after my coffee, I feel nauseous. Omg, seriously?! All I have for breakfast is a cup of coffee: Instant, some milk, and that's it. And I'm nauseous?!

Honestly, I sometimes feel that my stomach would be most pleased to be just left alone, with nothing in it. But, I do get hungry, and when water isn't enough to quell the growl, I have to look for food. A little slice of fruit doesn't seem to upset it, but not a full meal. Sigh.

Well, it is going down in a note-to-doctor, and I will try not to think about it until I see him.

It will be a quiet Christmas, this year. Just Chuan and me, here in PD. So, it will be just another day in the week!

And soon, we'll be outta here 😁 (that emoji is described as: Grinning face with smiling eyes. EXACTLY how I feel about moving back to KL)

almost Christmas time

Christmas is almost here, not that I celebrate it or anything. But, I do love trees, and the magic of the Christmas tree is something beautiful. But, this year, with my house in a mess because of our move to KL... well, not this year. There'll be a tree next year! I have spoken ☺

In early December, we went to IJN to collect my sildenafil (they only let me have about two month's supply at any one time), and also to get the date for my next appointment, which was pending. I see my doctor on the 8th of January. I'll have the usual blood test - mainly to see if my cholesterol number has fallen - and the 6-minute walk. Neither worries me, so I'm good.

Whenever I go to IJN, I see it milling with people who are there for their hearts, and that always amazes me. Always. I am not alone, eh? Hahahah. But, I also see people who are quite ill, and it reminds me that that awaits me, and I sorta feel a bit sorry for myself, for a bit lah. I asked Chuan what he thinks, and if his mind also goes along that route, and he says he doesn't let it: I think about now, he says. It's good, and he's happy for that.

And so I let a little tear trickle down my eye, and think about other things! Hahahah.

My days have been quiet, as usual. Doing the usual things (see pix above!), and feeling all right. Except for this shoulder-ache that has been bugging me for more than two months, now. Sometimes, I feel it's getting better, but at other times - like now - I feel it's getting worse. Chuan looks for trigger-points near my shoulder, and presses on them, and the pain eases, but it only comes back again to bug me. And, it has to be my right shoulder, of course. The one with the hand that I use for practically everything, so I'm trying to NOT reach out with it but to switch to my left hand, when I need to do anything. It is NOT easy!

I tried switching my mouse to my left hand, but that totally didn't work! Hahahah. So, I've hidden the mouse behind my monitor, and use the touch-pad instead. I actually love the touch-pad, but I remember that I hurt my finger, years ago, so I stopped using it and moved to the mouse. If my finger now starts to hurt, I think I will just cut off my right arm. That sounds like a pretty good solution. 😖

But, on a positive note, I can now walk continuously for 35 minutes. Yay and woohooooo! and all that. I am now trying to keep to that time, but to walk faster. That's because the 6-minute walk is about the distance you walk in 6 minutes (and how you feel after it; they measure your heart-rate, and your pressure - so you can't lie that you're feeling fine, when you're actually dying lah!). So now, I can walk for a good amount of time, but if I walk faster, I can increase my distance, and that would be a good thing. It will show that the meds are working, and that I am well.

And I AM well. I feel very good, and almost not ill, at all. My breathing is good, I seldom feel the need for a lie-down in the middle of the morning. And sometimes, I can even forget that I have PH and go about feeling like a normal person. Except for the shoulder-ache that's making feel yucks.

When I see my doctor in January, I am going to ask him if I can go off the Lipanthyl and see if the shoulder-ache goes away. It is the same kind of ache that I had, years ago, when I was put on a statin. My cholesterol readings righted themselves, on their own, then. Now, they're being a pain, and I don't know why.

Ahh well, we'll see how it goes.

For now, I will deluge Facebook with my pictures of Christmas, and all the warm, cozy images that the fills the internet. A lovely time of the year, when people are winding down, thinking of happy things, and looking forward to a new, and better year, ahead.

Update: I just stepped on the scales, and I've lost some weight. Since 28 July 2016, I have lost 17 kg (37.4 lbs).  0.7 kg since the last time I weighed myself, and I'm so happy I haven't put on any weight - like I did previously. Little by little, I am losing the fat, especially around my belly. So I am glad that I am doing something right!

chugging along, nicely

It's been a while since I've posted anything - says Captain Obvious - but really, it has all been good. At least, it has been good for me.

My medicines have kicked in nicely, and I find that I am not tired all the time, and that most days I feel almost 'normal'. I am able to average close to six-thousand steps a day on most days, and on some days, I've broken the seven-thousand step mark. For me, that is brilliant progress and it makes me very happy.

But, everything around me hasn't been quite so rosy:

My son has been with us recovering from an operation, and for a while I was consumed with worry about him. He is on the road to recovery now, and soon will be back at work, fingers crossed.

On Saturday, my little dachshund, Bella, collapsed after coughing, and a visit to the vet's tells us that she has a grossly enlarged heart, and that it's pressing on her trachea. She will be 13 on the 29th of this month, so my little angel is an old girl, isn't she?

She's on medication, and it seems to be working, and I am so grateful to see her almost smiling again.

Bella

Today, an artist friend posted on Facebook that she has Stage 4 cancer, and I was very upset by the news. She is a year younger than I am, and I am so very sad for her. Recently re-married, and so happy, it must be quite devastating to find out something like this. But, she is a believer in god and she has turned to prayer to bring her solace. She sounds like she's taking this so well, and I hope that that is true.

Of course, reading about her made me remember my PH, and what it means. It's like someone says, in one of the PH-blogs I read a while back: We are all going to die. And yes, we all may go out there and get hit by a bus tomorrow, and it would be sayonara. But the difference for me - and for my friend, now - is that we know the bus-number, who the driver is, and when it will be coming down the lane.

Our move back to KL is taking its own sweet time. Still. Our contractor isn't the most organised man in the world, and there are lots of bits and pieces yet to be pulled together before we can call it finished. I myself will not be able to move till all the dust has settled, literally. Hahaha. But, I'm cautiously optimistic that December might be IT! At least, we should be able to see the last of him by the end of this month, fingers crossed.

I'm learning to make this true, for me.

just chugging along

It's been a while since I've written - but really, nothing much has been happening, so what's there to write about? My big-big project for the last couple of weeks had been to learn those three French songs, and I did, and I recorded them on my phone, and now I can tick that box and move on.

What I have learnt is that although my voice is so rough, and gruff, and so hard to push through my voice-box, I have found that singing helps to ease that somewhat. If I have some time in the evenings, I'll sit in front of YouTube and find some karaoke tunes. When I start singing, it's usually a song that I know I can do - but most times, it will be a barely-there voice that croaks along. I have learnt to not get discouraged, and to bash on. I laugh as my voice breaks, as I fail to hit the right notes, when to my own ears I sound like an eighty-year-old granny! But eventually, my voice will return and I can sing the songs, hit the right notes, and be comfortable in the keys that I used to sing in.

For me, that's a big deal. Always, I have found comfort in song, and to be able to still do this brings me joy. I tell myself that this is good for my soul, and that I am nourishing myself on a spiritual level. It is true for me, so it is true! But, I also tell myself that I'm exercising my lungs, and making them stronger, and that my lungs are happy, too. I don't know if that's true or not, but does it really matter?

I've also been fiddling a bit with my paints, and did some squiggly bits on a bottle that made me feel good.

Chuan and I went out to the Seremban 2 mall and had a bit of a walkabout, on his birthday, and bought some cake which we enjoyed for tea when we got home. For some reason, that was a tad exhausting for me, even though we didn't spend long there, and my Fitbit said that I had a lot less steps than usual. How is that possible? I do not know, and I do not care. Hahahah. I know I was up and about, and walking here and there, and if Fitbit doesn't like it that I didn't do my usual walk-in-circles, then it's its problem, not mine.

Yes, I'm fighting with my Fitbit.

Medicine wise, I've upped by quarter-dose of Lipantyl (fenofibrate) to half, and so far no issues.

But the ache in my shoulder, hip and knee - on my right side - is there, and sometimes quite bad. Is it the Lipantyl? It was the Ezeterol (ezitibe) that caused that, I know. Then, I had a break and things eased. Now, on Lipantyl, they're back again.

If things get too bad, I'll stop the medication. If they don't, or if I can bear the pain, I'll carry on - and see what my blood work shows, in January, when my next doctor-visit is due.

Our house-renovation is coming along nicely, though a glance at the photos of the work-in-progress is enough to scare the bejesus outta me!

a view from the outside of my sad, sad house

But, it's actually in the final stages, and by early-early next month, it should be all done.

So, overall, this is a boring-dot-com post, but that means that all's well with me.

... en français

Aujourd'hui, j'ai uploadé trois chansons sur YouTube - toutes en français. 

It is in my continuing quest to keep the French I learnt, about ten years or so ago, alive and kicking. It is not an easy task for this old brain, but it is fun trying!

To start with, I'd look for the lyrics, and set about trying to make sense of them. Google Translate is of immense help when I'm stuck with new words, or new combinations of words in a sentence. For one song, Perce les nuages, I asked the help of my friend who is a translator - Maryam - after I'd tried translating it on my own but was quite confused, and unsure, about the result. I'm so grateful to Yam - she was able to fine-tune the meaning in my head. It is easier to sing something when you know what it means.

C'est ma chanson

This is an old, old song - from 1967! Originally by Petula Clark, with the words in English written by Charlie Chaplin. This is the French version.

Perce les nuages

This beautiful song, was made famous by Isabelle Boulay, in 1988. I only just discovered it, and so had a double learning curve: To learn the melody; and, to learn the words in French. Then, I had to put them both together without getting my tongue in a knot, as well. I really enjoyed singing this one, and I wish I had my old voice back again, to do it real justice.

Je me sens bien

This is a fun song, and from wayyyy back in 1963 - when I was just starting school, at the age of 7!! I didn't know it then, and only discovered it on YouTube, a couple of weeks ago. This version is not the 60s-pop version of Petula Clark, but a more recent version, from 2011, I gather. Its lyrics are simple, and I didn't really need Google Translate, except to confirm that I'd gotten it all correct 😊

just chilling

Isn't that lovely? One day, I'll do something similar, but don't hold your breath!! 

Nothing much has been happening, but like it says above: I've chosen to be happy about it! Life ambles on, and I've got no complaints.

I've had to wind-down my exuberant attempt at increasing the time I spend at my walking-in-circles, but that's working out. I've now split it up, and do twenty-minutes in the morning, and try to squeeze another 10, in the evening. Also, I try to not rest if I can - so I find something to do, that will keep me busy, and keep my mind off my heart rate, and my breathing, and how tired I am. Distraction rules!!!

Some of the things I do: working at my art - either doodling, or making mandalas, and walking around my watercolour supplies and wondering when the spirit will move me! Also, as we're planning to move by the end of November, I'm packing and sorting the few things that I want to take to the new house.

Something that I have done is print out the lyrics to a song, en Francais! It is called C'est ma chanson, and it is Petula Clark's This is my song from 1967, when I was 11 years old!! The words are simple enough, and I can understand the French lyrics. But, actually stringing them all together to the melody is quite a feat!! So, every evening, I twist my tongue into knots while I practise putting the words to the melody. When I am convinced that I don't sound like a clown, I'll make a little recording of it. However, not only will my tongue need to comply, but also my voice - on not-so-good days, it refuses to make an appearance!

Always, I find some time to sit and read. It is my best therapy, and I can't imagine a life without books!

spoken in my ear

Feeling a little better today. And, I did just like it says: I walked a bit. For just 10 minutes, and when I still felt all right, I extended it to 20.

I'm resting now. 

a little harder to breathe

That's how it is today, and I am sad about that. Because I've been having good days, and thought that I've been doing really well. And then, Pooooof! It's over.

Over the past few days, the headaches have been a little more pronounced than they usually are. I have headaches all the time, it seems. But, they come and they go. If I don't think about them, I imagine that they've gone. Hahahah. It's all in my mind, I say!

However, over the past few days, I've been very conscious of them lurking about. Even when I try to think them away, it hasn't worked.

Then, this morning, while I was walking in circles, I felt this scratchy feeling in my chest. It isn't as serious as gasping for breath, but it is there, and I feel something in my chest when I breathe.

So, it ain't too easy to do this:

Headaches. Scratchy feeling in my chest. Result? Tiredness. So, even though I managed to complete about thirty minutes of my walking-in-circles routine, this morning, I felt really tired afterwards. Obviously, there isn't as much oxygen reaching my lungs as there should be, and so my body says: rest.

And I've been doing so well!!! Misery. I know this will set me back, and that irritates me. It took me a while, but I upped my time from twenty to thirty minutes over the last few days. Continuous walking, and doing well.

Now, I'm wondering if I pushed myself too hard. Hmmm.... But, it's a joke surely? I walk fairly slowly, and don't feel breathless or tired after my walks, so I think I'm doing fine. How can I not be?!

Geez, maybe my body doesn't agree. Maybe my lungs think I'm a freaking nutcase! 'Leave me alone, already,' it may be screaming. Ya' think?! Sigh.

Anyway, do not imagine me prostrate, and daintily sipping something, on the sofa. Well, resting in a horizontal position, maybe. Hahahah.

I am tired, so the resting come naturally. Always, this so-tired business is a tad demoralising.

BUT ... I will take my Spiriva, like a good girl, and after a few days, this will clear. Fingers crossed.

And, OH! I almost forgot - Time for a weather report: It has been hot and dry over the past two days. And Chuan says he smelt smoke in the air, this morning. Nothing like a bright and sunny day, with the air clean and pure, for my neighbours to decide: Lets BURN dem leaves and things! Nice lah, these people. Bloody pyromaniacs!!!

Ah well, c'est la vie! Tomorrow is a new day, and it may be better 😊

26 September:

So today, I walked in circles, as usual. For 20 minutes, and it was cool. I rested for a bit, and then, thought I'd do another 10 minutes or so. Not a good idea 😑

The scratchy chest returned, and a bit of a headache made its presence felt.

So: The lesson is learnt. I can walk for 20 minutes continually, and I'm good. If I want to up that, I'll need to do it in small-small increments. So small that my body - read: Lungs - do not notice. I've gotta fool those twins that I'm not doing more than they think I should! I've got this!

In the meantime, to help me get back to normal: 

walking in circles

Yes, that's what I try to do, every day. I started out with just walking for 10 minutes - and that was tough!! But, I persevered and moved it up to 15, and then 20 minutes. For the past few days, I've been doing 30 minutes.

My goal for each day is 3,500 steps. That's wayyyyy below what is recommended: 10,000 steps. My daughter does 12,000 easily. But, she is young and healthy. Lucky girl!

For me, anything over that goal I've set myself makes my heart sing. No matter how I feel, I try to at least achieve 3,500 steps. On some days, it may involve just one-hundred steps at a time. And when I hit it, my Fitbit will vibrate on my list, and I am happy. Tomorrow, I'll do better. Baby steps. Literally, eh?! 😁

While I'm walking, I keep an eye on my heart-rate, and I'm aware of how I'm breathing. No breathlessness allowed, so I consciously note my breaths and that they're coming easy, and that I feel good.

This is continuous walking that I'm talking about. I try to get it in before lunch, sometime. And then, if I'm feeling up to it, I'll try to squeeze in about 5 to 10 minutes or so, in the evening. Not power walking or anything. Just happily walking along, on the flat floors of my home - no stairs! And sometimes, belting out some song that I'm listening to on YouTube. Walking AND singing, how cool is that?!

And I do this in my Birkenstocks - nice and comfy, with my soles well cushioned, so that the rest of me isn't injured either.

Today, I walked for half-an-hour. And I did the same yesterday. It's a big deal for me, and I say: Yay!!! Hahahah

This is my Fitbit record for this week. It's almost 1 pm, and I've quite a happy number of steps, haven't I?

Below, is my record from last week. Slowly getting there . . . . But there are days when I don't feel very good - so, on those days, I rest. Resting is my superpower, and I do it without an iota of guilt!

And below, is my record from about a month after being put on sildenafil. Before that, there were days when I barely moved at all. So, this is one of the better days recorded, from that time.

Walking is easy, so it's not something I dread, or feel unhappy about having to do. Plus, I know that it's good for me. And, it's good for my heart, and for my lungs.

I don't know if what they say up there is true - but, I really hope it is!! Some of us need all the help we can get 😊

a little bit of rest

On Monday night, I stopped taking ezitimibe, my chosterol-lowering medication. I've been prescribed with another one, and I'll start on that one next week sometime.

We thought - Chuan and I - that we'd give my liver a little rest. It's been working really hard, since November '16, handling the load of medications that has assaulted my system, hasn't it?! Time for a little holiday, minus one medication.

Ezitimibe has a half-life of 19-to-30 hours, so there's quite a bit of it still circulating in my system, even after five days.

An unexpected outcome of this 'rest', is that there is a noticeable easing of the pain I've had in my right shoulder, right hip, and right knee. No need for Sherlock Holmes on this one: Most cholesterol-lowering drugs have the lovely side effect of joint-pain, among a whole host of other lovelies. (See here for my other medications, and their side effects.)

Years and years ago, I was put on Lipitor (a statin), in an attempt to lower my cholesterol. Yes, we do seem to have a little problem with that, don't we? I took it for a month or so, but my right shoulder kinda froze - there was limited movement - and it was very painful. So, I got off the medication, and the shoulder un-froze itself and I was as good as new. My cholesterol level also righted itself, and all by its lonesome, too.

This time around, I didn't relate my aching right side to ezitmibe - until I stopped taking it. And now, I am enjoying an almost pain-free shoulder, hip, and knee - and, like I said, it's only been five days. I'm expecting the pain to be out the window, soon!

Then, I'll start on Lipanthyl (fenofibrate). Here's what WebMD says about it:

Fenofibrate is used along with a proper diet to help lower "bad" cholesterol and fats (such as LDL, triglycerides) and raise "good" cholesterol (HDL) in the blood. It works by increasing the natural substance (enzyme) that breaks down fats in the blood. Fenofibrate belongs to a group of drugs known as "fibrates." Lowering triglycerides in people with very high triglyceride blood levels may decrease the risk of pancreas disease (pancreatitis). However, fenofibrate might not lower your risk of a heart attack or stroke. Talk to your doctor about the risks and benefits of fenofibrate.

By the way, my triglycerides are in a good place.

The side effects:

• severe stomach/abdominal pain,
• persistent nausea/vomiting,
• yellowing eyes or skin (jaundice),
• dark urine,
• unusual muscle pain,
• tenderness, or.
• weakness especially if accompanied by fever or flu-like symptoms.

The complete - and scary - list of side effects can be found here.

With all medication, we have to balance the risks of the presenting problem (in this case, high LDL levels) against its possible side effects. I read the list of side effects and think that this drug is probably going to kill me much faster than my IPAH is! 

I'm going to do a Pooh Bear and think-think-think about this for a while. 

Some good advice, below:

NSAIDS and PH

'...Non-Steroidal Anti-Inflammatory pain medications (NSAIDS) such as ibuprofen (Motrin), naproxen (Aleve), Etodolac, celecoxib (Celebrex) are all effective medications for mild to moderate pain.  However, all these medications also put increased stress on your kidneys.  In PAH, the kidneys are already under stress from impaired right heart function.  Taking these medications promotes fluid retention and can lead to abrupt worsening in kidney function and increased shortness of breath over a short period of time.

A safer alternative for mild to moderate pain is acetaminophen (Tylenol) (for me, Panadol).  Even if you have some degree of liver disease, doses of 2,000mg per day are safe.  If you don’t have any liver disease, doses of up to 4,000mg per day are safe.  No more than 1,000mg should be taken at a time and no more often than every 6 hours.  You should avoid alcohol if you take acetaminophen....'

Antibiotics with PH

'...Antibiotics are one of the most commonly prescribed medications.  Unfortunately, most antibiotics prescribed for respiratory infections in the ambulatory setting are given to patients with respiratory viruses.  Antibiotics have no activity against viral respiratory infections (except for Tamiflu for Influenza).  At the same time, many PAH patients are taking warfarin (Coumadin).  Antibiotics interact with warfarin in a way that results in warfarin being far more effective.  The net result is that your blood will be too thin and the risk of bleeding will be markedly increased.

The solution to this problem is two-fold.  First, avoid antibiotics for the common cold and other minor respiratory complaints such as acute bronchitis.  Second, if you are taking warfarin, always remind your doctor and ask if the warfarin dose should be reduced.  My practice is to reduce the warfarin dose by 50% for the duration of antibiotic use.  I also check blood work to monitor warfarin more often if the course of antibiotics is prolonged....'

(Taken from here.)

- also, some antibiotics increase the efficacy of digoxin (for example), and doses must be adjusted - see below.

the doctor has spoken

So, we're home after our visit to the doctor, at IJN. I'd say it was a good visit, and I am doing well. Happiness. And the doctor smiled at me. Again. Hahahaha.

My blood-test results are fairly good: There is a heart enzyme that is now normal, and that's really good news. It was wayyyy off the charts for a long while, and that it is normal now means that my heart is happy, and is no longer stressed.

But, my potassium levels are up. This is probably the consequence of being on Spironolactone (a diuretic), so I've been taken off it.

Also, my cholesterol reading: Although it has come down from the last time it was read, it is still outside 'normal' and that is not good. So, I shall now have to bite the bullet and take Lipanthyl. Fingers crossed this does the job. Mr doctor-man is threatening to put me on a statin if the readings don't improve! Yowzer! I've read enough about the ill-effects of statins to not want to be on them unless I absobloominglutely have to!

So, I shall watch what I eat, and try to exercise religiously - read walk! - and I am confident my cholesterol picture will improve.

I had some questions for him, and these are the answers:

• do I need to take my blood pressure daily? That's not necessary, but it would be good if I can;  to keep track of how I'm doing.

• how do I monitor myself between visits to see you at IJN? Generally, if I feel all right, it means that I am doing all right! Hahahah. Howz about that for an answer?!

• do I need to see a GP between visits - so that he can monitor how I'm doing? Nope. If I am not ill, there is no need to go to a GP. (That's good news, because GPs are full of people who're coughing and sneezing and being generally ill.)

• when do I need to haul myself to Emergency? What symptoms do I need to be wary about? He laughed when I asked this. Ok, I lie: He smiled more broadly than he was already smiling, is all. He didn't think that that was going to be an issue now. Even if I have the flu, or a cold, a visit to the GP would be enough. But, I'd need to say that I have IPAH, and then they'd know how to take it from there. 

• can I fly? I want to visit my daughter in London. Yes, I can - and I won't need oxygen. How cool is that?? He said that if I can walk for 20 minutes, without feeling breathless, I will be fine in the air. On my broom, or on a plane!

• I walk, and that's all the exercise I do. How much exercise is 'enough'? This is really up to me, he says. If I can walk continuously for 20 minutes or so, I'm doing all right. I need to worry only when/if I get breathless when I walk.

I think I am doing all I can to meet this head on. I am trying to walk every day, and I am trying to make this walking-in-circles last for at least twenty continuous minutes. Longer, if I am feeling all right. Sometimes, on days when I don't feel too good, I break that twenty minutes into two ten-minute sessions. But so far, I haven't had to do that very often.

So, I am doing well. 

He is trying to keep my heart and arteries healthy - that's why he's adamant about bringing my blood cholesterol reading down to within the normal margins. 

Very gently, he explained - again - that this is a disease about managing the symptoms, and not about securing a cure. Essentially, it is a disease of the lungs, and the pressure in my lungs is high, and will remain high. The sildenafil I take helps relax the blood vessels in the lungs, and eases the flow of blood into it. This in turn eases the pressure on my heart: it doesn't need to pump so furiously to get blood into my lungs. Like it had been doing before the sildenafil - which led to the enlarged right ventricle. At some later point, sildenafil alone will not be enough. Then, he will need to add on more medications to keep this happening. For now, it's all good. 

Every time I have an appointment, I'll need to take a blood test (to check that everything else is working; and that my heart's hormones are fine), and do the six-minute walk. The results from both of these tests will give him an idea of how I'm doing. If I am not breathless, and I can function all right - well, that will be my barometer that all is well.

I think that today's visit was a good one. And, I'll see him again in four month's time. I should be back in KL by then 😊

a visit to the doctor's

Tomorrow, too 😀

So, three months have passed, and it's time for another visit to IJN.

This time around, besides checking on my lungs and heart, he wants to see how my cholesterol levels are doing: He wants them to go down.

I've shied away from taking meds for it, and tried to adjust my diet to exclude extra fats/oils (I truly believe both oils and fats are necessary, though. Just not in excessive amounts.), and I've upped the amount of time I spend walking-in-circles.

I walk around the house, trying to hit at least 3,500 steps every day. Some days, I can barely hit 2,000. Other days, I hit more than 4,000. Doing anything more is too difficult, and I pay for it dearly, the next day. This is my walking-in-circles, and I try to do this about twice a day, for about ten to 20 minutes, each time.

They say that exercise uses up cholesterol, especially in the absence of sugar in the system. So, ideally, the time for me to walk is before lunch. Which is what I've tried to do, if my body says it's ok. Sometimes, I try to argue, but my body is pretty firm about what it will do, and what it won't!

Back to IJN: I have some questions for my doctor. And I've written them down, so that I don't forget!

• do I need to take my blood pressure daily?
• how do I monitor myself between visits to see you at IJN?
• do I need to see a GP between visits - so that he can monitor how I'm doing?
• when do I need to haul myself to Emergency? - What symptoms do I need to be wary about?
• can I fly? I want to visit my daughter in London.
• I walk, and that's all the exercise I do. How much exercise is 'enough'?

My visit is weighing on my brain, so I am not in the best of moods. Not really focused on anything. I am the queen of being anxious about things I have very little control over - so bite me! To help me cope with this, I am reading some fluffy rubbish - I can't concentrate on anything serious - and watching episode after episode of 'Taggart' on YouTube. I do have moments of sanity, though. It's not all spaced out and zombie apocalypse. 

We'll be leaving at the crack of dawn, tomorrow. Literally. It will be dark when we leave, and as we hit the open highway, we'll see a sliver of light on the horizon - the yawning sun! It's a long drive there of almost two hours. But, it's how it needs to be. I will be fasting, and will need to have my blood taken by about 7.30 am. Then, it will be breakfast, and then flirting with my Kindle until I'm called to see the doctor - by around about 11 am, fingers crossed. Oh, what a fun-filled day it's going to be!

overjoyed

That's me, singing this oh-so-difficult-for-me song, by Stevie Wonder! It was released in the mid-80s when I was a young mother, and too busy with dirty diapers and trying to learn about being a wife and mum, to know what the new song releases were!!! Hahahaha.

Years later, I'd hear this song, and just flow away on the music. And the words! I love the way the words are all jumbled around, and often don't follow the natural way we speak. 

This isn't jazz, but there are bits and pieces of it here - and that's enough to catch me off guard. And often!

I think this will probably be the last song I post here. If I do record more, they'll be on my channel on You Tube. I'm toying with the idea of singing the harmony - to myself - on The Bee Gees 'In the morning'. I can plan it, but I have to wait for a visit from my voice before I can go ahead!

Any day I can carry a tune without croaking, that's a good day. And so, yesterday was a good day 💖

I've put the lyrics below, so that when I decide to give me a listen, I'll have the words to help me along. In some parts, there are wayyyyy too many words for the space of the melody!!! Stevie Wonder is da man!

Over time, I've been building
My castle of love
Just for two, though you never
Knew you were my reason
I've gone much too far
For you now to say
That I've got to throw my castle away

Over dreams, I have picked out
A perfect come true
Though you never knew it was
Of you I've been dreaming
The sandman has come from too far away
For you to say come back some other day

And though you don't believe that they do
They do come true
For did my dreams
Come true when I looked at you
And maybe too, if you would believe
You too might be
Overjoyed, over love, over me

Over hearts, I have painfully
Turned every stone
Just to find, I had found what
I've searched to discover
I've come much too far for me now to find
The love that I sought can never be mine

And though you don't believe that they do
They do come true
For did my dreams
Come true when I looked at you
And maybe too, if you would believe
You too might be
Overjoyed, over love, over me

And though the odds say improbable
What do they know
For in romance
All true love needs is a chance
And maybe with a chance you will find
You too like I
Overjoyed, over love, over you,
Over you

____________________________________

How singing helps with PH - it really does. I read it here 😍

just not looking the part

That's one of the hardest things I find about being ill with IPAH. At least for now, that's the story: I do not look ill, no matter how I might be feeling. I look perfectly fine. In fact, I look better than I have for quite a while, because I have lost a ton of weight - the woman exaggerates, of course - and am mighty pleased with myself. I'm standing right outside the door of 'normal weight for height and age', right now.

 *jumping for joy*

But, because I don't look like I'm ill, I worry that people won't believe that I am ill. And who are these people, you ask. I don't know. Just people. People I don't know, or care about, or whatever!!! Hahahah. I know it's absurd, but that's how I feel, and sometimes, I feel uneasy about it.

Like when I have to turn down an invitation to visit.
Or, an invitation to dinner.

Or, someone who says they haven't seen me for a long time, and can they drop by tomorrow, next week, whenever?

I am feeling all right now. That's all I know. Tomorrow, I may be feeling horrid. Next week, I may be having difficulty breathing - and trying to stay calm, and not bring on a panic attack by worrying that my heart is going to stop any minute now - because it sure feels like it's planning to!

Whenever, I might be suffering from horrid bloating, and be sitting up so straight, and rubbing my rib-area, and trying to not say out loud that I wish I were dead, because the pain is so bad.

But, how do I explain that to whomever's asking?

How do I say what's-what to people who are acquaintances, and don't really understand what's up with me.

I mean, I have explained this disease to people, and they still do not understand what it's all about. 

'Is it your heart, or your lungs?' 

'You can't breathe? Then, why are you going to IJN*??'

'You/she looks fine!!'

So, my always reading-between-the-lines mind wonders if they don't really believe me.

And because I am an idiot, this upsets me. It upsets me because I wonder if people think me a fraud. I wonder if they think I'm like Emma's valetudinarian** father, Mr Woodhouse!  

I think I am fast becoming a Mr Woodhouse, as it is! I worry about getting the flu, or a cough. Because if I get it, it will take me a long time to get over it. And, I know this is true: Because I have been ill before I was diagnosed, and I did take months to shake off something like a cold, or a cough.

All this valetudinarian-ism (nope, no such word!) is helped along by my dear husband, of course. Stay away from that side, there's someone with a hacking cough over there! Hahahah. Such fun, I tell you.

But, it all feels so selfish. And I've always said that I do not want to become my disease. It is just what I have, but I want my life to go on normally.

Easier said than done, though.

I tire easily, and often, I need to rest. Remember, it's my superpower, k!

And, even when we have guests, after a bit, I need to excuse myself and go off to my bed - yup, you guessed it: To rest.

Resting is a big part of my day. Without my multiple rest-times, sprinkled generously throughout my day, I'd be out like a light by about 7 in the evening!!! The medications help me get the oxygen I need, and ease the flow of blood from my heart to my lungs. But, any kind of activity is a strain, and when the strain gets too much, my muscles actually hurt. I realise now that this hurt is my body telling me that I've not got enough oxygen in my muscles, and that I need to rest. So, I feel the hurt in my shoulders, and often, in either my thighs or calves. All cries from my body, saying: Rest time!

So, these are little things I've slowly learned about me and IPAH, and I'm slowly learning to live my life around it all. 

But, what I find hardest to do, is to explain this to others. Because, frankly, it seems so very lame!!! Hahahaha. "I'm tired. I need to lie down." Another one of Jane Austen's characters getting the vapours, eh?

Talk about life turning around and biting me in the bum!

So there, I've written about it, and I hope this will get it out of my system.

Note to self: It is all right to be tired, and to say you need to be excused so that you can go lie down. It's all right if people think you're a slug. You don't care what those people think anyway!

Note to self

* IJN: Institute Jantung Negara, our National Heart Institute

** valetudinarian   noun (I had to look this up! 😉)

1. a person who is unduly anxious about their health.

   • 
     

     a person of a weak or sickly constitution; 

     especially: one whose chief concern is his or her ill health.

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