On the last day of Papa Benedict’s Pontificate; from Divine Office..

God of hosts we implore, look down from heven and see. Visit the vine and protect it, the vine your right hand has planted.

Men have burned it with fire and destroyed it. May they perish at the frown of Your face.

May your hand be on the man you have chosen, the man you have given your strength.

And we shall never forsake you again; give us life that we may call upon your name.

God of hosts, bring us back; let your face shine on us and we shall be saved.

Glory be…

Final blessing.

Thank you Papa.

Entertaining dysphasia/aphasia in Fibromyalgia/cfs/ME/dyautonomia POTS – “Shambles”

One of the more entertaining symptoms of “Shambles” the name I have given my disease, is dysphasia. That is slow, slurred speech, word block and the most bizarre word replacements. This is quite entertaining to the kids, and I have a laugh too – because it is funny, but it’s also annoying and at times down right embarrassing.

Post-wedding crash has not been nearly as bad as I was expecting. I had planned for it so there’s been no home ed this week. However the children soon find stuff to do and I am pleased to see how much they read. But I am shattered and could in no way hope to home ed this week.

Back to my entertaining aphasia. I caused great hilarity in asking Roni to fetch my “homing device” when I meant mobile phone. No, I don’t know where “homing device” came from.

My default word seems to be “dishwasher” for some reason and as I try and correct it I can come out with all sorts of gibberish.  The dishwasher meanwhile got called “the disappearing box” for some unknown reason, while a kitchen is a pilchard house.

I had a whole list of bizarre and unheard of words for a watering can.

I don’t have problems understanding other people even when I’m really shattered but producing coherent language can be a right challenge at times. It’s a not often noted symptom of “shambles” but there are a lot of people who report having it. High res SPECT scans and high res fMRIs are showing more and more that Fibro and ME brains have some odd damage and lesions in unexpected places. It is not the same as MS but very similar.

Along with the word confusion, gibberish, slurring and just word block comes the short term memory problems. In a bizarre twist yesterday while I couldn’t come up with the word “watering can” I had technical language to do with theology rolling off my tongue without a problem. Even I was taken aback with that wondering how I was so fluent in something probably more difficult and couldn’t name a garden tool!

I can go for days speaking perfectly ok but in a crash or when I’m just tried it can quickly go to pot. Slurring, just running out of words and giving up. I do think things have been worse over the last month and I suspect I had something like a TIA about a month ago; so it could be that. Who knows? I don’t.

While the symptom is pretty ubiquitous among both the ME community and Dysautonomia lot, I can’t find any specific research on what the root cause is. Most people either get the brush off from medics or a “nothing we can do” response.

I am one of the lucky ones. I don’t think many people care less whether I sound daft or not – which is a blessed relief. Some of my kids, and even my lovely new daughter-in-law are amazingly good at translating so it doesn’tget too frustrating.  But also, I’ve reached that point with “shambles” where frankly I can’t help what anyone thinks of my weirdness, whether it’s twitching and jerking, keeling over, or my neologistic miscues. I can’t control my “shambles” so I am learning to live with it. I hope others are learning to live with it too. My poor ol’family certainly have no choice.

I don’t really have any advice for those of you reading this because you struggle with it too. The only thing I can say is, laugh a lot. Don’t let the thing upset you. And have pen and paper at hand. Sometimes I can type things I can’t say – weirder and weirder but it’s true.  Word block isn’t helped by typing but I don’t often get word confusion, or at least not as badly when I type.

And remember, you’re not alone in blurble-flurble-dingbat-undermender.

It was a lovely Wedding.

Well, I didn’t cry! Tough as old nails me. I did come close once, for which I blame the best man. His speech was probably the most genuine and blessedly short speeches I have ever heard. He showed what true friendship is and I was very touched.

The way the whole thing came together was amazing. All day Friday the Explorer Scout group that Alex and Iona are part of were at the Church Hall with Anna’s parents and Al and Ronan, getting it set up and ready. It looked stunning.

Meanwhile Iona had finished the cake  and it was transported with great care!

A few things about the day stand out for me. First of all I was so pleased to see that people from our parish and some friends came to the wedding Mass, even though they couldn’t get to the reception.

I loved the fact that our parish priest obviously sees Alex as a true spiritual son and loves Anna as much, though he has known her less time.  He works so hard. He came and grabbed some food, rushed off to do some visits and say 5pm Mass and then came back and joined us.  He hasn’t asked for a penny for the use of the hall.

The other thing that was lovely was getting to see friends we don’t see very often these days and one of them concelebrated the Mass – which was special for me, as I’ve known him since we were teenagers.

The food for the wedding was amazing. So many people brought so much food there was tons left over. The Scouts and some of the guests, including our Deacon and his wife worked their socks off in the kitchen and stayed ’til nearly 1am on Sunday morning to help clean up.  (We left just before midnight when the children had obviously had enough; Josh carried Heleyna home and I had Avila on my lap most of the way).  I have to say there are a lot of very good cooks out there. A lot of the left overs went to the soup kitchen and Father says he’ll sell some of the cakes. A lot of the left overs came back here too.

Anna’s dress made by her aunt was lovely and her aunt had also hemmed the table cloths. On the cloth for the top table she had hemmed in the names of Anna and Alex and the date of their wedding. It got a lot of admiration, although she was very humble about it.

Josh hired kilt sets for him and Ronan. There was no Scott tartan available for hire so we went with the Help for Heroes tartan. The military hospital wing is up the road from us so it’s a charity we like to support.

It’s pretty lovely to see the new Mr and Mrs Scott looking so happy.

The following day was Ronan’s 1oth birthday. Even though it was crash day for me and there was a lot of post-wedding stuff happening around him, he had a good day. Our friends came over (having stayed in a local hotel) and spent a good chunk of the day with us and so Ronan had time to play with a friend he doesn’t get to see very often.

Now, for a little quietness…. well, probably not.

The Wedding! The first of our children to get married.

This gallery contains 6 photos.

Friday Freebies; Lent stuff, the Pope and the Conclave…and other eclectic things.

Classical Homeschooling Magazine online

A probably complete list of the free online books written by Charlotte M. Yonge.

This is a very good overview of the pontificate of Papa Beni I am among those who believe the establishment of the Ordinariate will bear great fruit. There are plenty of prophecies from the saints and blesseds that say England will revert one day. Perhaps the Ordinariate will pave the way.

There’s this great freebie for children to get to grips with how the conclave will work.

Don’t forget my freebies from the past The Via Dolorosa for Lent and Easter

The SEVEN LAST WORDS

The Seven Sorrows of Our Blessed Mother which include walking with Jesus to the place of crucifixion; standing at the cross; receiving her beloved Son’s body into her arms and laying Him in the tomb.

And there’s the VIA GUADE to take you from Easter to Pentecost.

There’s plenty of things to find at That Resource Site

Enjoy.

The Wedding – getting ready.

As we are in the last two days before the wedding the activity levels increase. Yesterday I got the rest of the Order of Service printed and Alex stapled them. Then I fell asleep!

Today I’ve got some bits and pieces to do but am under strict instruction to do very little so I can be sure of being there on Saturday. I do not want to miss my son’s wedding and I am trusting that I will be fine on the day.

Ronan has made a lovely gluten free treacle tart and instead of Eton Mess he’s going to make a lemon meringue thing, I just made the lemon curd in the most cheatish way I’ve ever seen.

200g of caster sugar (gran’ll do)

250 mls lemon juice

100g of unsalted butter (I used the butter I made a couple of days ago)

3 eggs. whip the eggs up.

Put it all in a pyrex or other microwave safe bowl. Give a whipping with a fork.

Put it in the microwave and then nuke it for a minute at a time, stirring it with the fork after every minute or so.

It took about 5 to 6 minutes (can’t quite remember) to get it to thicken nicely. Leave it to cool

I’ve never made curd this way before but it has worked reasonably welll and is certainly quicker than the proper way. The proper way produces a much better consistancy though – but the quick version tastes fine.

I’ll pour this into a flan case and then crumble meringues into whipped cream and slap that over the top.

Ronan’s Gluten Free treacle tart

grease and line a 9″ tin.

roll out shop bought gluten free shortcrust pastry and line the tin.

Into a heavy base saucepan put  8 tablespoons of golden syrup

2 oz of unsalted butter (used my home made)

heat this over a low hob until the butter is melted.

let it cool a little and then add in 2 beaten eggs

4 0z of gluten free breadcrumbs and 4 tablespoons of buttermilk (you can use cream but we have buttermilk from making the butter)

Pour the mixture into the pastry case and cook on Gas Mark 4/350 F for about 20 minutes.

Alex has just arrived with an armful of cheese, which stinks! However, he has left behind the Stinking Bishop which was offered as a substitute for something else (a hard cheese, so why they subbed Stinking Bishop I don’t know.) He’s decided not to have the SB at the reception as it will stink out the entire place!

Things are getting a little stressful for the bride and groom but Iona is all calmness as she completes the wedding cake; only occasionally bursting out “Don’t touch me I’ve made A HUNDRED scones!”

As I’ve only made about 18 I can’t really compete can I? LOL!

Do not be afraid.

The internet is both a blessing and a curse. It’s up to the user to choose which it will be. On the one hand there is so much genuinely and shiningly good to be accessed, and on the other there is the strange permission to lie and hate others for no particular reason,

And yet I think there is a reason there is so much more hatred spewed out over the net and it’s not as simple as the anonymity that being online can offer. It seems to me that hatred is almost always rooted in fear.

Jesus kept saying, “Do not be afraid.” 2000+ years later it was the refrain of Blessed Pope John Paul the Great. “Do not be afraid.”

Those of us with a dx of ME/cfs and Fibromyalgia face ignorance and nastiness from doctors all the time. Any co-morbid condition like POTS in its various flavours or other orthostatic intolerance (OI) face dismissal, rudeness and sheer maliciousness from medics so often it almost beggers belief. What is so astonishing is that this is not an isolated thing. It’s not even a one country thing. Patients from all over the world have face the same “group-think” of medics who obviously think they are within their rights to treat patients with the politically incorrect dx of ME/Cfs and it’s friends with utter contempt.

The mainstream media has jumped on the anti-the patient bandwagon (in fact it was the media who termed the phrase yuppie flu back in the ’80s ignoring the fact that the disease was across all walks of life and had horrible effects. Then even when a journalist tries to be a little more honest in his/her reporting, when it’s online, the comment boxes are full of strangely angry people denigrating a group of seriously ill people, they have never even met!

Jesus said the Truth would set us free and that’s certainly true – but lies can be very comforting, especially if you tend towards fear. I think those who are so willing to attack patients with ME do so because they fear the spread of the disease. It’s everywhere and is more often than not in huge clusters. Are people spewing hatred at people with ME because they fear it might reach them?

Wherever evil has held sway the sick and frail have been trampled under foot or just murdered.  A world view that sees people as no more than cogs in the money making machine will always turn vicious towards those who can’t take part in the machine.

Our culture has no problem with people working themselves to death to make money for a company, but looks askance at carers who spend their time working to elevate the suffering of others. It’ was no coincidence that under the full scale consumer-capitalism that Britain was thrust into in the 1980s that both ME was labelled as “yuppie flu” that stay at home carers were dismissed as weak and that nurses couldn’t get a living wage while our patients lost so much in benefit payments that many ended up homeless (and the prisons started to fill up rather suspiciously quickly)

In light of this political thought, blasted through the media at full volume it is will little surprise that I hear of the viciousness and death threats spewed all over the Holy Father as he steps down. He is a good, gentle, humble and deeply holy man so of course there are those who hate him.  He is in the utterly strange position of standing for Truth so he is adored on the one side and reviled on the other.

The hatred of the Holy Father is fascinating in some ways. Many of those who hate him insist that the old man is pointless and the Church has nothing to say, and yet it’s still him they attack and not any of the other religious leaders. The fact is that the Catholic Church stands alone as the last bastion against the culture of death. There are little boats sailing with us (as St. John Bosco saw in his prophetic dream) and they tend to be the Orthodox churches, although I believe some of them have caved on some issues around the sanctity and open to life nature of marriage. Orthodox Jews also stand firm against the culture, and of course there are individuals among the evangelicals and some muslims.

But the fact is the full on attack against the culture comes from that pointless old man they are all so afraid of.

For those of  us who are sick, the witness of both Blesssed Pope John Paul and Papa Benedict in their own sickness and weakness is a true inspiriation. In their witness we find we do have value as persons no matter what the culture tries to tell us.

Those of us who have lived through a few popes now have been in the  blessed position of seeing saints sitting on the Chair of Peter. Just as the first 500+ years of the Church was packed with saintly Popes, so it seems the last 400 years  of the Church has seen the same. Whether the next man is a saint or not, we are still facing the darkness and we are called by Christ to not be afraid.

The Entire Word.

It was St. Luke’s Gospel this morning, wherein Jesus fasts for forty days and is tempted by Satan.  In the very first response to Satan, Jesus reveals Himself. Satan says, “If you are the Son of God, turn these stones into bread.”

“Man does not live by bread alone,” Jesus quotes Deut 8;3.  If we didn’t know the tempter was Satan would we think Jesus would do wrong in making some bread for Himself and eating it?  It doesn’t seem wrong. And yet God doesn’t create for His own sake. He needs nothing. Everything He has made He has made from His agape love. We don’t have an English equivalent to agape (Greek) although the word “passion” comes close.  Unfortunately we have reduced the word passion to meaning intense feelings; but it really means to pour out for the sake of the other. Hence Christ’s Passion is His pouring out for us.

Christ’s bread miracles are both about feeding the people, not because He is in need. But even though he feeds the 5000 with bread and fish (not bread alone) He still insists we should live by every word that proceeds from the mouth of God. (Deut 8;3 Matt 4:4 Luke 4:4).

What is the Word? John tells us “In the beginning was the  Word,… and the Word was God” (John 1:1) In Greek it’s logos, a word of meaning. Greek has so much more in it’s language on this point.

The Lord Jesus Christ, the Incarnation of the Second Person of the Holy Trinity is the entire, meaningful Word that we are to live on.

Christ gave us the Church, His Bride, His Body (in which we are His body) and the Church from the apostles (he who hears you, hears Me. He who rejects you, rejects Me) gave us the entirety of public revelation through oral Tradition (1 Cor 11.2) and written Scripture (first canonised at the Council of Rome 382 AD under Pope St. Damasus I). All of this is completed, so that we can live on every word that comes from the mouth of God, in the Holy Eucharist, where we receive the Body, Blood, Soul and Divinity of the Word of God; Risen, and whole.

So while we receive the Word in the form of the Liturgy and bread (and wine) we are not being fed by bread alone, but by every Word that comes from the mouth of God. And let us remember that the Word was what brought about creation. What He says, is. When He says “This is My Body,” and “This is My Blood” He means it.

Wedding preparation: making butter.

It is the week leading up to Alex and Anna’s wedding.  The Reception, which they are having in our Church Hall will be a bring and share feast. So the cooking is under way. Iona has the cake to made and there are scones and tea loaf for freezing before the day.

I have just made a batch of butter. It’s pretty easy to make.

I had two big tubs of double cream (it was on offer – the best time to buy it for making butter)

If, like me, you are lucky enough to have a Kenwood with the K beater – you’re made.

Pour the cream into the bowl and start beating it. The cream will thicken and get stiff. Watch at that moment because the transition from thick cream to butter happens rather suddenly.

You will find the butter and buttermilk have separated.  Pour off the buttermilk into a jug.

You need very cold water. Pour some in with the butter and beat very slowly. More buttermilk will form which you can pour off. I usually manage to do a couple of these before I need to take the butter out and wash it the final few times. I put the butter in a bowl and rinse it a few times under the tap until the water runs off nearly clear. Press the butter to leach out the final water.

Rinsing and washing is important to prevent the butter going rancid.

Then I rolled the butter out and using Iona’s embossing sheet (she uses for cakes) embossed the butter with swirls. Then cut them into pieces. I’ve carefully stacked the pieces between sheets of silicon paper and now they are chilling.

You can freeze butter. Home made butter doesn’t last as long as shop butter because the only ingredient is the butter. But the more I learn about food production the more I would rather make my own.

The butter milk was handed straight to Iona who is making batches of scones with it.

So people can have a little pat of butter to go with their scones.

I did not add salt. If you are going to freeze butter it can overly enhance the salt. Anyway, it’s so creamy and fresh, who needs salt?

Are more Catholic women ditching contraception in favour of real marriage and health?

“For forty years this generation wearied me, And I said their hearts are wondering and they do not know My ways; and I swore in My anger that they would never see My place of rest.” (Ps 95:10-11)

As families are torn apart by selfishness, divorce, and loneliness more and more women and couples are turning away from the generation of contraception and genuinely seeking God’s will in their lives. If what I am seeing is anything to go by, it isn’t just Catholic couples who are turning their noses up at drugs and surgery that breaks a healthy part of the body, and has damaged marriage so badly, that perhaps even the prophets of the inevitable didn’t see it coming.

No Christian church/community believed that contraception was in any way allowed until after the Church of England Lambeth Conference in 1930 were contraception was deemed allowable to a married couple in very extreme circumstances.

The wise and Spirit led Pope Pius XI immediately responded with Casti Connubii (1930) which reiterated, strongly, the 2000 year teaching of Christ and His Church. But the damage from England spread out and soon other churches were allowing contraception and more horribly Christians began to favour killing the unborn children who were conceived despite the contraceptive use.

By the time Pope John XXIII called the Second Vatican Council the state of families was already a concern. But it had nowhere near reached the depths we face now.

When the Cassandraesque prophecies of Pope Paul VI were published in Humanae Vitae in 1968, he was ignored or vilified.  It is with sadness and in many cases bitterness and anger that many (especially women) of my generation have learned he was right.

Most people my age in the Western Church didn’t get much catechesis in school or family life. We grew up with a set of Jesuses from “He can’t wait to send you to hell” Jesus to hippy-stoned- do-whatever-feels-good-Jesus; and a plethora of Jesuses in between. We were given, at best, mixed messages about sex and marriage and left to fend for ourselves.  For many that lead to chemical contraception with all its side effects both physically, emotionally and spiritually as well as broken relationships and complications in marriage.

And from what I can gather it wasn’t just Catholics getting out the golden calf religion. Other Christians were doing just as badly, if not worse than us.

But the generation is done and the next generation are growing up and they don’t want the deal my generation got. They want the Truth – all of it. As the Church is improving in getting her message across more and more couples, and particular women, are asking for a better deal in marriage, more respect for their/our bodies and more love and generosity in accepting and parenting our children.

Jennifer Fulwiler has written a lovely observation on all this. Some of the comments show the change in thought and the massive obstacles in moving from  the “contraceptive mentality” to open to life and God’s will in our lives. There are those who find any of the forms of Natural Family Planning very difficult. One person even found the Marquette method hard.

Personally I have to admit to some irritation (and surprise) that the best way of learning NFP for me has been from secular sources. Fertility Friend.com which has a huge number of charts to be studied so you can learn to spot stuff on your own chart.  and the Toni Weschler book, Those are the resources I recommend when I’m helping someone chart.

We had some lessons from the Couple to Couple league as well which was a great help, especially as we were learning while I was breastfeeding!

A properly recorded NFP chart can tell you a whole lot about your health, or lack thereof. It will tell you when to catch that twinkle from God’s eye and when you can avoid doing so.

In a Christian marriage, child spacing should be done with prayer, not just with charts. The Church says we can avoid pregnancy for just reasons; which includes financial, emotional and physical health reasons. There is no church teaching that says a couple have to have as many children as possible no matter what. God isn’t nearly as stupid as some people want to think He is.

Having children is a massive responsibility and a joy; it should be a three way decision, God, husband and wife. Sometimes God gives a child even when you don’t think you’re ready, and sometimes He doesn’t give you one when you think you are ready and ask Him for one. Whatever He does He provides the grace required, you just have to accept and use it.

I think I’ll write a post on the health issues that charting can spot.

House of Lords debate on the PACE Trails and the lack of care in the UK for ME/cfs patients.

I am posting this here for those of you who are interested. I know, more or less, how it went down and I just can’t face watching the thing. I have huge respect for  The Countess of Mar and wish more people were like her.

The MEASSOCIATION has the vid and TRANSCRIPT.

I am particularly disgusted (but not surprised) at Robert Winston’s response. He obviously hadn’t a clue and hadn’t bothered to listen either. I believe he’s in the eugenicist camp anyway, so he wouldn’t much care about lesser being like ME patients. Once killing disabled unborm children is ok, there’s little left ethically really.

Overall the standard of debate here was dreadful. I can’t believe the intellectual laziness and refusal to actually look at the problems with PACE.

The Business of Post Exertional Malaise. (PEM)

Post Exertional Malaise or PEM as it’s called, is such a major sign and symptom of ME it is seems it should be the primary box to tick. If you don’t have PEM, you are most unlikely to have ME. It goes hand in hand with exercise intolerance. Obviously a person who can tolerate aerobic exericse doesn’t get PEM. But there are illnesses where a person may have exercise intolerance (COPD and heart failure spring to mind) but don’t have PEM.

So how does PEM manifest itself?

It is, in essence, a state of collapse. The patient is usually in a great deal of pain that many of us describe as a bone pain. It does feel as though your bones actually ache. There’s extreme brain fog with this so that you can’t think straight at all, or express yourself. In my case I quite often can’t speak or can’t speak clearly or with proper words.

Vision and hearing can be affected. In my case I tend to loose perception and get  tunnel vision and photosensitivity. I become very sound sensitive, but others loose hearing.

The worst part (IMO) is cyclical vomiting. I’ve only had this a couple of times thankfully, but it’s the most painful, exhausting, horrible thing.

One of the less horrible symptoms of PEM is the inability to stay awake. When I’m crashed badly enough I just fall asleep or semi-asleep. My body does it almost like switching off. Unfortunately this is not always the escape you might hope for. More than once I’ve dreamed I’m in a huge amount of pain.

This crash can last from a few hours to a few months. I will never forget the crash I had three years ago which lasted just over 6 months. It’s not something I want to repeat, so why those in the pyschi school want us to do so is beyond me.

When certain luvvies in the psychi industry talk about patients “fear of exercise” as though we are lazy twits who just need to work harder, they never seem to get that we KNOW what can happen because all of us have had it happen to us. Those luvvies think we should be barmy enough to choose, quite deliberately to put ourselves into crash. As this has killed a few patients (that Labour MP comes to mind) it seems like a ludicrous approach.

The increase in pain with PEM has been shown to be the muscles hanging onto lactic acid. Mitochondrial defects prevent the proper use of oxygen in the body. For those of us with lung disorders our oxygen SATs drop out quite often anyway and with the extra broken bit of mito dysfunction our bodies don’t process oxygen the way they should – and we crash.

There is a great deal of biomedical research explaining why we are so ill. If only Lord Winston and his cronies could be bothered to actually READ some of it!

Lent Reading; trying to be inspired.

It’s Lent and so I thought I would put out a list of books for good Lentern reading.

I’m still working through the Dairies of St. Faustina which I converted to a mobi file for my Kindle using CALIBRE, which is a free and easy to use e-book converter and manager.

I found a text file of the Catechism and I’ve made that into a pdf using PRIMO PDF. I’ve been using Primo for a long time to make the free lesson packs Kalei has been putting up on That Resource Site. Do go and take a look at what she’s got on offer for Lentern resources.

If you want to read a book on your ereader then having Primo and Calibre is a great help. I’ve transferred books to Word then to pdf and Calibre with convert them to mobi.

So I am hoping to read a lot of the Catechism throughout Lent.

I am also reading the Life of Blessed Anna Maria Taigi . I love this woman, but the book is a true penance to read. I can’t stand purple passage and this book is awash with sentimentality, flouncy, purple and elaborate extrapolations. It’s so bad, it can be difficult to find the story of Anna Maria in there – but it is there.

If you are wondering why I would deliberately read a book as astonishingly badly written as this, well, I really find her inspiring and there are hardly any books in English out there about her. I have the one by TAN publishers (can’t remember the author just now) on order – but that’s a hard copy so I will only be able to read it when eyesight allows.

I love Anna Maria because she was so ordinary in her extraordinariness. She was married, had seven children and lived a tough life. She cared for her parents when they grew old and poor. Her mother, who was a little difficult apparently, lived with them and then her daughter Sophia moved back home with her six children when her husband died.

Obviously the “big” part of Anna Maria’s story was her gift of prophecy and the “sun” she saw in which God revealed to her the things He needed her to tell others.

Anyway, apart from the penance of reading a badly written book, I’m hoping her life will inspire me to better behaviour over being ill. She had many of the same symptoms as your average FMS/ME cum dysautonomia patient, including severe migraines, black outs, pain, absolute exhaustion and the rest. She handled all this as you’d expect a holy saint to handle it – that is, not like me! So I am hoping for inspiration. (stop laughing!)

When my poor husband says he can tell how much pain I’m in, even when I, in saint-mode do not mention it – because I’m irratible and snappy that’s an epic fail!

So, hopefully Bl. Anna Maria will help me out, without me requiring yet another holy 2×4 across the soul. (So I’m a slow learner).

I am still slowly working through Les Miserables which I love. Even so, dear old Vic likes to pontificate rather pompously and go off on long pontifical-tandems to the point where you almost feel like yelling “Get back to the story!” But when he’s in the story; it’s brilliant.

As a straight forward book I’m reading a The Emperor of North America the second book in the Young Chesterton Chronicales by John McNichol. I actually bought it along with The Tripods Attack for Ronan but as you can have it on more than one Kindle at a time I’m getting to read it too.

So I have something to read for all brain states from flurble to relatively sensible.

Another shock at the Vatican :P

Lightning struck the dome of St. Peter’s last night. It lit the whole area up for a moment before going dark again. Very pretty and awesome to watch.

I am sure it will be seen as a sign of something by many. Perhaps it is a sign; but I’m too spiritually dense to get it.

The prophecies of St. Malachy are being rolled out again.   There seem to be three camps on these prophecies, those who think they are fake, those who believe them and think the next pope will be the one to take the Church through the end of the end times and those who think they are true and that the next pope will be The Antichrist.  So, you can see there are a lot of…erm…views, on this out there.

I am not going to say I disbelieve in these prophecies – I don’t know them well enough to decide. I know that such things tend to feed the kool-aiders but they should be a reminder to the rest of us too.

These are the end times after all. They’ve been so since the Church was born on Pentecost 2000+ years ago. We must keep the light burning and our lamps trimmed.  When Jesus arrived the first time around so many people had given up on the idea of a Messiah that they were not ready when He came and many rejected Him.

We should be a bit more cautious. We don’t know when the end of the end is coming so we shouldn’t be so sure it isn’t coming yet.

Let’s just pray and be ready and fight the battles that need fighting.

The final prophecy of St Malachy  is reported to say

In persecutione extrema S.R.E. sedebit Petrus Romanus, qui pascet oves in multis tribulationibus: quibus transactis civitas septicollis diruetur, & Judex tremêdus judicabit populum suum. Finis.
(In extreme persecution, the seat of the Holy Roman Church will be occupied by Peter the Roman, who will feed the sheep through many tribulations, at the term of which the city of seven hills will be destroyed, and the formidable Judge will judge his people. The End.)

Around the world the Church is under some terrible persecution. In Islamic lands Christians are being crucified, literally. Photos of these un-named martyrs for Christ are doing the internet rounds.

h/t for this lovely mosiac image of the prophecy of St. John Bosco http://www.andycoan.com/photo.php?id=3658&gallery_id=73

In the West we are losing rights at a rapid rate. If we are to make a stand for virtue and true marriage, we are going to face serious problems. People have already been threatened with jail time and fined heavily for having a moral conscience.  We would be a bit daft to think it won’t get any worse.

St. John Bosco isn’t the only saint to see the future of the Church as one through severe battles of both propaganda from her enemies and physical attack.

The next Holy Father has a massive task ahead of him, whether he guides the ship home or just further along in her journey.

Oramus.

(complete side note; both Rome and Jerusalem were cities on seven hills (Vatican Hill was the eighth hill and across the Tiber from Rome) and of course there’s Sheffield. … )

I love Cardinal Arinze. His views here are worth the few minutes of listening. I think he would be a wonderful pope, but apparently he is already 80.

Pope Benedict XVI has announced he will step down on 28th Feb.

On Thursday 28th February in the Year of Faith Pope Benedict will step down as pope.  His announcement today has come as a shock, but I trust him implicitly and he has made it clear he has been discussing the situation with The Boss, who has been keeping His Church on the straight and narrow Way even through some  awful times (and awful popes). We are blessed these days that in my lifetime at least we have had such good, wise and holy popes.

His full declaration is here h/t Creative Minority Report:

Full text of Pope’s declaration

Dear Brothers,
I have convoked you to this Consistory, not only for the three canonizations, but also to communicate to you a decision of great importance for the life of the Church. After having repeatedly examined my conscience before God, I have come to the certainty that my strengths, due to an advanced age, are no longer suited to an adequate exercise of the Petrine ministry. I am well aware that this ministry, due to its essential spiritual nature, must be carried out not only with words and deeds, but no less with prayer and suffering. However, in today’s world, subject to so many rapid changes and shaken by questions of deep relevance for the life of faith, in order to govern the bark of Saint Peter and proclaim the Gospel, both strength of mind and body are necessary, strength which in the last few months, has deteriorated in me to the extent that I have had to recognize my incapacity to adequately fulfill the ministry entrusted to me. For this reason, and well aware of the seriousness of this act, with full freedom I declare that I renounce the ministry of Bishop of Rome, Successor of Saint Peter, entrusted to me by the Cardinals on 19 April 2005, in such a way, that as from 28 February 2013, at 20:00 hours, the See of Rome, the See of Saint Peter, will be vacant and a Conclave to elect the new Supreme Pontiff will have to be convoked by those whose competence it is.
Dear Brothers, I thank you most sincerely for all the love and work with which you have supported me in my ministry and I ask pardon for all my defects. And now, let us entrust the Holy Church to the care of Our Supreme Pastor, Our Lord Jesus Christ, and implore his holy Mother Mary, so that she may assist the Cardinal Fathers with her maternal solicitude, in electing a new Supreme Pontiff. With regard to myself, I wish to also devotedly serve the Holy Church of God in the future through a life dedicated to prayer.
From the Vatican, 10 February 2013

BENEDICTUS PP XVI

He turns 86 on April 16th and with the massive workload he has had I can easily see how he has decided with the guidance of God, to step down.  He has worked hard over the last 8 years and he worked bloomin’hard before that.

He has come very close to bringing and end the schism with the East and I really hope and pray the next Holy Father will continue this vital work so that the Bride can breath with both lungs intact again.

So break out the Divine Office, rosaries and Divine Mercy chaplet – or whatever else you use and get praying.  The Conclave will meet in March (presumably after Easter).

SS Peter, Linus, ‘Cletus and Clement and all the other saintly popes ora pro nobis.

UPDATE

It has been reported that the Holy Father laid his pallium on the tomb of Pope St Celestine V. Dr Scott Hahn noted this. Pope Saint Celestine V was the last pope to step down from the office in 1294. 

I remember that Cardinal Joseph Ratzinger went to pray at the tomb of St. Benedict (I read he is a third order Benedictine himself) and prayed very hard when it looked like he might be elected pope. 

Fr. Dwight Longenecker has noted that one of the great achievements of Pope Benedict has been setting up the Ordinariate for those who have come home from the Anglican/Episcopalian end of things.

You can read more from The Anchoress.

Bob Millar has ended his hunger strike.

Thankfully Mr. Millar has ended his hunger strike.

I know people are hopeful that Ampligen will be approved in the end and I hope they are right.

Here in the UK we could do with a strong push to have the bio-tests made readily available. We can’t ever hope for any medical assistance while we can’t even access the tests to tell us whether we have a viral ME or Lymnes or Lupus or EDS of some type etc.

Choosing apparent loosers. God has a great sense of humour.

Today’s readings look at God choosing those He wishes to take His message to the people.  First  we learn how Isaiah (6:1 -8) beholds a vision of heaven and becomes acutely aware of his sin and shortcomings in comparison to the purity of God. The angel touches his lips with a burning coal from the altar of heaven and he is made clean and able to speak the message God sends him with.

Then we learn how Simon who will be named Peter (Cephas) on seeing the miracle of the massive catch of fish also tells the Lord that he is a sinful man. Jesus says “Do not be afraid. From now I will make you fishers of men.”

Finally we hear Paul’s words declaring that he is preaching the Gospel given by Christ to Peter and the apostles and he points out how unworthy he was to be called and chosen as he had persecuted Christ.

All three men are called, and answer that calling in humility. They don’t demand a right (that doesn’t exist) to be a prophet or a priest. In fact as all three were martyred, (Isaiah was sawn in half, Peter crucified upside down and Paul beheaded) I am quite sure they might have preferred the old life.

I always think how Paul had come so far in his priesthood for Christ. He had been educated by Gameliel one of the greates rabbi’s of the Jewish world. It was the cream of education. Then, when Jesus calls him, Paul finds himself under the authority of a fisherman. He never once complains about this. That’s true humility.

When God chooses these three He tells them what to say and they say it. When they spoke or wrote it was under the inspiration of the Holy Spirit and so they gave us the Word of God, not their own ideas.  Both Peter and Paul are clear that no one should be listening to other “gospels” that come from those who put themselves forward as preachers and teachers.  Jesus had said to the twelve, “He who hears you, hears Me, and he who rejects you, rejects Me.” When Paul was made an apostle, (like Matthias who replaced Judas) then the words of Christ were applied to him.

I think it’s much harder to know where the Truth lies these days. We must pray for discernment and seek honestly the Kingdom, and remember God doesn’t leave us to seek Him in vain; but we must seek Him.

Getting some medical attention. Private or NHS….(and Bob Millar’s fight for Ampligen)

I probably blogged after I had phoned the hospital and came up with the likelihood that I would not be able to see the Cardiologist until May. I was gutted, as I really thought this time around there might be some treatment, or some help of some kind.

After doing my own research (something too many doctors still disapprove of, as though they are afraid of patients who know about their own bodies) I found out that I most likely have Postural Orthostatic Tachycardia Syndrome; POTS. I did a couple of poor man’s PoTS tests to check.  Sure enough from lying down to standing up my heart rate whops up by more than 30 beats per minute and hovers over 120. If I am busy doing stuff like cooking, housework etc it can rocket up to 130s and 140s. So not a very serious POTs case but bad enough to make me feel horrible. This coupled with unstable hypertension and sudden onset of tachy at night leaves the question is this hyperPOTS or a combo PoTs or even Inappropriate Sinus tachycardia (IST) with Orthostatic Intolerance.

I don’t really think I have IST. My sitting up resting HR is 100+ usually but lying down it’s never more than 88. If I lie down long enough I can get it to in the 70s. I don’t lie down much in the day though, so my “normal” HR is around 100 to 110.

POTS is a complicated disease set and wherever I went to seek info the same thing was said “Doctors don’t know about POTS” and “Even most cardiologists know nothing about POTS”…

So I went in search of a specialist. In the UK, as far as I can see there are NO specialists in hyperPOTs. The world leader in hyperPOTs research is Dr. Grubb in the USA. Even dr Julia Newton who is a leading researcher in POTS in this country doesn’t tend to have much to say about hyperPOTS. She deals with the more common forms of either POTS with no BP changes or POTS with Neurally Mediated Hypotension(NMH)

I have found a POTS specialist at the hospital near me. He doesn’t have a background in hyperPOTS but he knows more about POTS than any other cardio I’ve ever met. The last cardio I saw dismissed me out of hand, even after admitting there were changes on my ECG, just because I have fibromyalgia.

So, it’s been a right game trying to get tests, let alone treatment.

Well the troops are rallying. More than one person is offering me the chance to go privately.  I’ve just received money from two lovely friends and a family member is also offering to pay for me to see a cardio privately. I am so grateful for this help! I really want some answers, especially as hyperPots can be genetic, especially from mother to daughter. Not a nice thought at all!

Getting onto the hospital we find the POTS specialist doesn’t have a private practice!! Arrggh! He is spread so thin between University, NHS and some charity work that I can see why he might not need, or want, a private clinic.

With some badgering from dh, I’ve got an appt in March (much better than MAY – but leaves me worried I’ve shoved some other sick person further down the line).

So what is my plan of action?

I am going to request epinephrine and STANDING norepinephrine tests as well as standing dopamine test.

I also want them to check out baraflex failure.

I also want the various blood tests for Lupus. It’s shocking that I’ve never even been tested for Lupus despite the symptoms overlapping so much and having a child with autoimmune disease (type 1 diabetes) which should even tick the (stupid) NHS statistics box.

It’s very frustrating that so few cardiologists have any knowledge of POTS and the way it affects people. I am going to try and find out if there is a specialist who takes private patients.  It would be good if there were dysautonomia specialist clinics – I can dream!

However bad it’s been for me, and however scared I might be of ending up bed bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of innocent until proven Irish in the UK) but Mr Millar had been bedbound with ME and Ampligen had him up and about with a life to lead. He has relapsed badly and he so very much wants something in place in case his sons become ill. I can relate to that. Perhaps you, too, are uncomfortable with hunger strikes, but Mr. Millar is in a worse position than most of us, he had Ampligen and got his life and a lot of his health back – and now the rug has been pulled from under him.

Keep him and his family in your prayers.

Montessori geometry; angles.

I’m working through Cultivating Dharma’s geometry album with Heleyna. I haven’t used THESE freebies yet.

I am using the construction triangles and rods as well as one or two other bits from JMJ Publishing.

We started with the triangles some time ago and Heleyna can now name the three basic types of triangle; equilateral, isosceles and scalene with acute, obtuse and right angles.

Using the construction triangles from JMJ she has made various shapes.

Then I introduced her to the Montessori protractor.  It has little pegs all around the face of a full 360º protractor complete with fractions.

We started with a bent straw (not from the album) to make a right, acute and obtuse angle on the protractor face. Repeated this with acute being smaller than a right and obtuse being bigger.

We made more angles and triangles with rubber bands.

Then I introduced the insets for the protractor. For the first lesson she simple measured their angle on the protractor and then drew around them in her Geometry notebook.

As the insets are easy to use Heleyna can get on with measuring and drawing around them herself, with me simply there to add a bit of help if she asks.

The next lesson we used the paper rods to make triangles in her book and then to label the parts of an angle; vertex, side and amplitude.

We used the paper rods to make different angles.

I read her the story of Sir Cumference and the Great Knight of Angleland. This comes with a paper protractor. It’s a good, simple way of getting the facts across. We have a few Sir Cumference books now and I will probably buy more as we go along.

Having got the hang of measuring angles we started to use add angles. Heleyna would choose a piece for the Montessori protractor. A 90º or less piece. She would measure it and then draw round it and write the angle inside the shape. Then she would measure another shape (and acute piece). She would place that next to the first drawing and draw round it writing the angle inside.

Putting both pieces on the protractor she measures the new angle. We check it by adding the two angles together.

These lessons are done over  a few weeks and we repeat them through.

I think the tactile nature of the Montessori resources is a great help, and I can see how children aged 5 to 6 (Heleyna is 5) can get to grips with fairly complicated ideas if they can actually make it themselves.

The fight for Ampligen is on.

UPDATE: sadly, yet again the FDA have refused to approve Ampligen for ME patients. They are asking/demanding for Phase III trials to be done. This is massively expensive and I am unsure how Hemiphrex are going to do this; especially as there are some complications in the Hemiphrex finances apparently.

Can’t help wondering why approval can’t go ahead with “yellow slips” for this drug now it’s passed Phase II. I think there are plenty of ME patients who would be willing to risk it considering how horribly sick many people are.

The fight continues.

 

Over the next two days the FDA (Food n Drugs Admin in the USA) are going to hold a webinar on  Creating and Alternative Approval Pathway For Certain Drugs  Intended to Address Unmet Medical Need.

There is some understandable concern that this is more smoke and mirrors and more stalling from the FDA over approving Ampligen for patients with severe ME/cfs. I don’t think I have stumbled upon a disease this serious that has so much bizarre politics surrounding it.

There is no doubt that ME is a very nasty complicated disease and there are plenty of co-morbidities to add layers of complication. Very few people with ME only have ME. Most of us have other stuff like FMS, PoTS, other dysautonomic problems. We have compromised immunity and endocrine abnormalities. I don’t really blame doctors blanching when faced with someone who has such a shambolic and system wide disease set. (I can’t see this as one disease it’s a multitudenous mass)

Of course one of the major obstacles even in America where at least there is the International consensus diagnostic criteria – which outstrips the ridiculous Oxford Criteria here in the UK – there is still no definitive narrowed judgement as to what ME/cfs actually is.

The daft name Chronic Fatigue Syndrome came from the CDC in America back in the ’80s when, for reasons that have never been clear, they were hell bent on not helping the patients affected in those cluster outbreaks (See Hillary Johnson’s tome for the full story; but even she couldn’t work out why the CDC staff behaved that way)

There are a number of biomarkers being put forward for the disease. The primary one would be the Post Exertional Malaise (PEM) which can be measured in muscle biopsy and VOX2 Max tests (that is oxygen consumption)

Other biomarkers are mitochondrial dysfunction and Mast Cell reactivation.

Then there’s EBV reactivation antibodies, Coxsackie virus, CMV and a whole lot more.

The rates of heart failure, kidney failure and bizarre forms of cancer are much higher in ME patients (and life expectancy is 58 as opposed to 82 in the general population and this is a massive improvement from a few years ago when heart failure and ME gave a life expectancy of 46/7.

Coupled with a quality of life that has been measured as worse than those with COPD you can see why so many patients are begging for a chance to have this drug (or any drug that might work!)

A doctor once said to me that people don’t die of ME, they die of something else. It’s a bit like saying the 1918 flu epidemic was fine really because no one died of the flu. No, they didn’t, they died of pneumonia or other opportunistic infections. The fact is, however, that none of those people would have died if they didn’t have flu.

People don’t die of HIV, they die of the opportunistic infections.

There is a strongly supported hypothesis that CFS should be renamed CIDS or CFIDS; Chronic (Fatigue) Immune deficiency Syndrome.

Pray for those who are fighting for Ampligen to be approved. There are people so ill they were bedbound until they received Ampligen in trials. It might not be a cure-all for ME/cfs/cfids/whatever-the-hell-this-is but it certainly helps some people.