Monthly Archives: October 2012

Year of Faith: You are a priest forever..of the order of Melchizedek

On Sunday the Second Reading was from Hebrews 5 about how a priest is called, made and what he is supposed to do. The central role of the priest is to offer sacrifice for sin. The author of Hebrews speaks of the role of the High Priest showing it’s continuation from the Levitical priesthood into the Hight Priesthood of Christ and to the priests He handed on His authority to. The central part of the role has not changed. A priest offers sacrifice for himself and his people in reparation for sin.

In the old Covenant of course the sacrifice was conditional and had to be repeated and was never enough. Then Jesus came, fulfilled the sacrifice with His own Body, Blood, Soul and Divinity. He was the one High Priest whose sacrifice was “once and for all” never to be repeated. He completed the act of salvation for us in rising from the dead and now everywhere, all over the face of the earth where Mass and Divine Liturgy are said that once and for all Sacrifice with the risen Body Blood Soul and Divinity is represented for all of us.

But that wasn’t the part of the reading today that struck me. It was this line about the priesthood; (Hebrews 5:4)

And one does not take the honour upon himself, but he is called by God, just as Aaron was.

I’ve heard a few things recently, and a lot over the years about people who demand to be accepted to the priesthood. They insist they have a “right” to be ordained and that the Church has no business deciding whom She will and will not accept to ordination.

The fact is, from the very first days of the Church no one thought there was a “right” to be a priest just because you felt like it. The priesthood was then and is now a calling from God and He asks a mighty amount of those men He calls. They are to give up everything, take up the cross and follow Him. They are to serve vast amounts of people, many of whom are less than grateful.

I never hear the willingness to serve, sometimes in awful situations, from those demanding the “right” to be ordained. Their whole discourse is power and politics based and nothing to do with sacrifice, sacraments or service.

When I hear these people going on about their “right” to “power” in the church I can’t help thinking of my parish priest. I know from personal experience how much time he takes with the seriously ill. His care of my friend was excellent and I know she wasn’t the only one he showed such care for. He visits the sick and the elderly regularly. My son has met him at work, much to both their surprises. I also know from others about the quiet work he does to help mothers in crisis pregnancies. He doesn’t shout out his work. We hear along the church grape vine when people speak of how kind he has been. He sits with the dying, and comforts the grieving.

The day after my friend’s funeral, which was such a difficult, difficult day, I heard he had a funeral for a baby. No rest for him. Barely time to grieve for my friend who was his friend too.

God calls men like that, They don’t tell God He needs them. They don’t tell God they have “rights” and He had better take note.  The Church tests them and ordains them. She sends them out to work and work. That’s not a right, that’s a vocation.

Cardiologist POTS Spec appointment.

I went off for my appointment at the hospital this morning. I am more than aware of how all this works so I had no hopes raised and accepted I would be given the brush off in some way.

There are words I never expected to have come from my mouth or keyboard, but here they are; The Professor was lovely! He was respectful, honest and straight forward. He made no assumptions but actually asked me questions about my wheelchair use and lifestyle. He did a short poor man’s POTS test and said that he tries to avoid sending people for Tilt Table Tests (for which I was so grateful!).

He says it doesn’t look like classical POTS as my BP goes rocketing up with my pulse. Pure ANS dysfunction or failure would cause Hypotension. I’ve read this so I knew what he was on about. I assume I have that narrow band of POTS where hypertension is part of it and that would be adrenal. I don’t know yet.

Next step is a 24hr  ECG. I should get wired up in 4 to 6 weeks for that.

He noted the complicating factors for my tachy being how bad the asthma is and the very strong meds I’m on for that.

And of course he noticed the Amitriptyline.  He’s not going to rush into taking me off that. He seems to know a few patients who need it for pain.

I asked him the question I am now going to ask every doc I see. Which camp are you in over FMS and ME – the “real disease” camp or the “all in yer’ead” camp. The man accepts that both FMS and ME are diseases we still don’t know much about. He pointed out that the same can be said for POTS. He would accept the limits to our knowledge rather than assume the patient is making it up or has a mental health problem.

With the complications I have he couldn’t promise I wouldn’t have to have a TTT in the end, but he’s going to work hard to find some answers and a treatment that can get my heart rate down.

As we were leaving the nurse who works with him said, “He doesn’t give up easily you know.”

WHoohoo! He even agreed with her!

I know there won’t be any easy answers. But at least I think I may have found a doc who actually wants to find some answers.

Dysautonomia Awareness Month: As I learn more the jigsaw looks clearer.

Having been ill for ten years, you’d think I would have a grip on the research about what my body is doing to me. But to be honest I was too cautious in reading it. Nearly all doctors

, (with the exception of my GP thankfully) are extremely precious about medical knowledge and the last thing they want to see is patients who have read the research and, worse still, understood it.

Even in my nursing days I heard doctors grumbling about patients who had “Been on the internet,” and were asking questions. So I thought I might be better off keeping anything I knew to myself and not doing much research.

This has been a colossal failure as a method to ensure good medical care. So I have changed tack completely and I’m reading and listening to as much research as my foggy brain can deal with.

Having recently learned of the research that shows Fibromyalgia is likely to be dysautonomic I have made lots of little discoveries that fit a lot of the other symptoms into the ANS disorder.  I would never have worked out I had POTS if I hadn’t read the research. I would never have known there was a good poor man’s tilt table test if I hadn’t read the research and I would never have discovered why my heart can gallop to 148 on  a bad day and my legs swell and mottle. All of these pieces of the jigsaw are now neatly in place.

You could say, but there’s still no cure, and not much treatment. And you would be right. But the fact that I decided to take charge of my own health and fight for it has made a big difference to me. I am still getting gradually sicker and sicker. I’ve crashed out this week completely and been useless to be around. It’s not good, but at least I now know WHY this is happening, even if no doctor ever reads the research, I have, and now I know.

Knowing what’s happening, even when you can’t stop it, is much better than not knowing. It’s better to know for sure there is no cure and treatment is difficult, than to be left with the nagging sense that if only some medic could really pay attention there might be a cure.

Sadly 21st century medicine is nowhere near as advanced as fiction on tele might suggest. Too much medicine is strangled by the weeds of ego and self-serving along with political interests and of course money grabbing. Nothing new under the sun there.

Real Education is a dangerous thing for some

This article via Nonna reports that the German minister Norbert Blum has spoken out for intrinsic family rights.

In Germany parents are not allowed to decide for themselves what is the best form of education for their children. They are forced, violently at times, to send their children to school, no matter how bad the school might be.

Parents who have removed children to home educate – which is an intrinsic right – have been persecuted, their children forcibly removed, and parents threatened with prison.

Sounds like a Nazi regime doesn’t it? And that might be because the law against Homeschooling dates back to 1936. It’s one of the few Third Reich oppressive laws that wasn’t repealed.

from the article:

Michael Donnelly, GHEC2012 secretary and director of international affairs at Home School Legal Defense Association, the world’s largest home education organization, underscored this impact.

“Norbert Blum has said what no one else in Germany has been willing to — that Germany’s iron-fisted monopoly on education is unhealthy for children and families. I hope Angela Merkel and others in her party will listen to the wisdom and advice of this German statesman and take action soon so that parents in Germany can homeschool like millions around the world,” Donnelly said.

The German government have received heavy criticism from those fighting for human rights over the years. unfortunately they are somewhat sheltered from proper condemnation by the strange anti-family culture of European power bases.

I am sure the nod-wink of European politics to family oppression is why Ed Balls and his strange sidekick Badman felt comfortable in citing German law as a reason to come after home educators in this country.

One of the primary goals of most home educating parents (as far as I’ve seen locally and internally) is to teach our children how to learn. We want them to be able to make their own discoveries, to discern right from wrong, truth from twaddle (as Miss Mason would say). We want our children to learn to think critically and be able to understand language use and misuse.

The Taliban are quite right to be deeply afraid of a well-educated populace. They are even more right to be terrified of educated women. It has been shown in missionary work that when the woman and girls are educated they educate the men and boys. Then education spreads from families to local communities and out there. A real education is a genuinely empowering thing.

People who want to bully, control and oppress don’t want people who can think for themselves. Spoon fed education and mass dumb media are great tools for them.

I am grateful I can still home educate my children.

Year of Faith: Thank Christ for Confession.

It’s too easy to take the Sacraments Christ gave us for granted.  God pours out a gratuitous amount of grace for us to use, and we often forget, or refuse it.

As I was sorting the washing t’other day I was listening to Catholic Answers phone in for non-Catholics. I think the non-Catholic phone ins are my favourite because there are some really thoughtful questions at times. But it’s the thoughtless ones that sometimes remind us of what we have.

A ex-Catholic phoned in with that strange kind of desperation to be right that is so often the hallmark of those who have run away from Christ and His Church. He insisted that the Bible contradicted Catholic teaching all over the place. Patrick, being more than fair, held the man over the break and gave him ample opportunity to ask about one issue in Scripture that the Church contradicts. When the break was over the poor man simply had nothing, so he took a scatter gun approach throwing out lots of Catholic practices, including Confession.

That’s the one Patrick and his guest Bishop Conley took up.  John 20: 21 to 23,  where the risen Christ hands on to the apostles the authority to forgive and retain sins.  There’s a great Biblical overview of the Sacrament here which not only shows the Biblical basis, from the very mouth of Christ, but also shows it was part of Church practice by the time the Didache was written (around 80 AD) and is therefore in the Didiache.

If there is one person who has and does understand the deepest complexities of human nature it is Christ – obviously. He is the number one psychologist. It has often been noted that as the practice of Confession has declined the pockets of therapists have filled.

The fact is when we have done something awful and we are suffering the consequences in both guilt and fallout, we need to speak out loud to someone. It is a sop to personal pride to say we can keep it between “me and Jesus”, and that’s before you even consider the fact that refusing to confess is disobeying Him anyway.

In the Sacrament of Confession God not only pours out His grace for us, but He enables us to hear the words “I absolve you in the Name of the Father and of the Son and of the Holy Spirit, our sins are forgiven you.”  That is such a wonderful moment.  So many people who have come back to the Church or have Confessed hideous sins such as abortion will speak of that moment when the weight is lifted and they leave Confession a free person.

On the other side of the psychological coin is the temptation to simply ignore our sins. So what if we said horrible things, it was a bad day. So what if we were too busy to bother visiting that sick person, they are too ill to notice. And as we quietly bin the corporal and spiritual works of mercy and get on with our busy busy lives, we slip into the horrible mind-set of “thank you Lord that I am not a horrible sinner like that person over there…” and the astonishingly common mantra “I’m a good person.”

Going to Confession takes humility and honesty. That’s why so many of us find it so very difficult to do. A good priest will often turn over a few extra stones with you so the forgotten and hidden things are exposed, cleansed and forgiven.

There is a beautiful story about Blessed Pope John Paul the Great. Someone had seen an old tramp as he travelled through Rome to the Vatican.  I can’t quite remember the details here but either this priest or someone recognised the tramp as having been a priest at one time.

On hearing about this the Holy Father asked that the man be found and invited to dine with him. This was done and the tramp was brought into the room where the Pope was going to eat with him.  The man and pope talked and it was true he had once been a priest but had fallen on hard times. The pope took his hands and said “Please will you hear my Confession Father?”

And so the first thing this priest who had become a tramp did to begin his road back to the priesthood was hear the pope’s confession.

For those of you blessed enough to have Confession readily available to you, thank God for that, and pray for us who can’t get there very often.

Epilepsy Clinic

Saw the doc at the clinic yesterday. He spent a lot of time telling me how it wasn’t epilepsy, even after I said I never thought it was. He didn’t know what to do next as the report from my hospital admission wasn’t clear. He asked me a couple of times what I wanted him to do. The EEG was clear of course.
I’ve noticed this question comes up a lot with doctors these days. Is it part of a new protocol where patients must be so well versed in their sickness and must be so well that they are able to clearly request what they need from the medic?
If so, I might be bold and tell them what the research actually says. …. or not.

I was tempted to ask him to wave a magic wand over me and make it all stop. LOL! Well, he did ask what I wanted.

I did ask quite firmly whether he believed FMS was a “real” disease or if he was in the “All in yer’ead” camp. The question made him quite literally squirm and he wouldn’t answer. So, that was my answer.

The next step is to await the next seizure and get whoever might be there to film it.
Yes, you read that right. It’s like some kind of Shame Attack Exercise! I remember those from my psychi days.
My coping strategy had been to tell the kids that if I should have more seizures they were to leave the room and let me get on with them, and I’d call them back when it’s over.
Not any more! It’s grab the camera and film me!!

It’s a great shame that no doctors are capable of taking detailed histories any longer.

Cardiologist POTS specialist next week. And no, I am not raising my hopes.

Home education when ill; Quo Vadis mater pt 2.

The question has come up, and I dare say will come up again, about whether I am doing the right thing in continuing to home educate.

Looking at what my friends have to do first thing of a morning and last thing at night, I don’t think school is an option. I can barely function at those two ends of the day. I am usually able to move around fairly freely by half nine in the morning, but it can take me over half an hour from getting up at half seven to getting upright to come downstairs. Then I tend to sit quietly and do morning prayer before I put the work out.

I then crash around half three, really can’t function them, and am semi crashed by after dinner. I home ed in the middle between half nine and half two and then cook mid afternoon because I can’t cook later afternoon or evening. I just can’t think straight.

I know there are a lot of very sick homeschoolers out there and very sick mums with preschoolers for that matter. I haven’t come across mums coping with sending and fetching kids to and from school and making sure the homework gets done, but I daresay they are out there. My friend has told me the homeschooling doesn’t stop once they’re in school, it just shifts to evenings and weekends. That just wouldn’t work here, where I often can’t string together a coherant sentence in the evenings.

So it looks like home education is the best option for us, as things stand. I’m not being heroic in continuing to home ed. I honestly can’t see another choice at this point.

Honestly, I don’t know how anyone without help from Himself gets through this sort of thing. At least I know He will make sure I can do what needs doing until it doesn’t need doing any more.

Ronan and Avila are pretty independent as learners now. They know how to learn which is the basis for any education. Even on bad days when I’m just the blob-mum they can get on with it.

I’ve cut back a bit. We are sticking to basics and that means that history and geography aren’t being covered as well as I’d like. But a lot of that is covered in Language Arts and Science, so it’s not a complete loss. Latin and Greek are down to once a week.

On good days or better days I add in the stuff we aren’t doing so much of. That way things tick over

Both are good strong readers now and read a lot at bedtime. I think I’ll re-introduce the quiet reading time after half term. They do this sometimes without my suggestion but I think I could ensure certain books get read, and encourage it as a routine.

Thankfully Iona will take them out of the house for an airing when I can’t.

As things stand they are getting a good education. If it came to the point when what they were getting was actually worse than what they’d get in school we’d have to rethink.
So far, so good.

Home Education: Quo vadis mater?

I don’t know exactly, is the answer to that question. Where am I going with this?

I started home educating about 8 to 9 years ago and did so because I was cornered. My son’s education was failing him so spectacularly, I had to do something. Feeling that I would never be able to get to grips with home education I read everything I could lay my hands on. I fell in love the work of Charlotte Mason and her gentle art of education with it’s Classical foundation that didn’t destroy a child’s natural love of learning, but on the contrary, cared for it so that it flourished. I also loved her love of books and insistence on good literature and no twaddle.

I heard about Dr, Maria Montessori along the way, but didn’t read much about her.  Now, as I read her work I think there’s more than just a physical likeness between the Northern English school teacher and the Italian doctor. (And you must admit, they do look alike).  They both base their educational philosophy on the solid rock of the child as a person, made in the image and likeness of God with inherent dignity and deserving of deep respect. They are both very Christ centred in their philosophy, which gives the firm foundation to the method. Neither women saw the child as a blank slate for the teacher to write on, nor a machine to be programmed; they understood the child’s personhood and soul.

I began to see that my youngest needed a more hands on, manipulatives approach to education. She learned best when she could touch it, move it around and build it herself. Book learning was proving very limited for her. She wasn’t interested in paper work and I was worried she was actually being put off learning by the method I was expecting her to use.

If she could touch it, smell it, rattle it and run after it, she was happy to learn about it. She has a rather chaotic, leapy-abouty approach to life, which can be a bit wearing at times.

So I began to look at the Montessori method and read her books, and get to grips with her philosophy.

I bought the first set of Montessori materials and found that all three of the younger children took to them immediately. I also began making some of the things Montessori recommends. Using large wooden trays to contain the work has calmed Heleyna down a little in her work. We’re working on this to try and increase her concentration span.

The change over however, feels very rocky for me. I was set up with the CM approach and fed in a classical and workbook side of things without making too many waves, but the Montessori Method is very different and I’m feeling a bit overwhelmed at times.

Yes, the approach works very well with my children, but the equipment is very expensive. A lot of Montessori homeschoolers make their own equipment out of wood, clay or by getting hold of wholesale supplies of beads.  But the fact is, this would take up a lot of time and energy that I don’t have.

In reading of the Casa Bambini’s what I find is children who are enabled to independent learning from quite an early age. They explore, self correct and learn using the carefully chosen and designed resources Montessori provided.  As I get sicker, this looks like the perfect solution, at least I hope so. If I can get the children to a point of using the equipment and books themselves, self motivated learners and discoverers, it will matter much less how ill I get. Most importantly I want them to know how to learn and how to discern truth.  I want them to understand that seeking truth is the most important role of education.

I am hoping I have bought all we will need for Montessori lessons, and the rest will be makable or do-withoutable.

Year of Faith: St. Luke

It’s the feast of St. Luke today. He has the special place in the Church as the only gentile who has contributed books to the Bible. His Gospel and Acts of the Apostles are two parts of one story taking Jesus from Galilee to Jerusalem, His death and Resurrection there; then from Jerusalem to Galilee and back again for His Ascension and from Jerusalem to the world as the Church is born and spread.

Luke is the one author who explains that Jesus sent out 70 (or 72) disciples in pairs to preach the Gospel, heal the sick and get some exorcisms done.  They all came back amazed at the authority Christ had given them.

St. Hippolytus writes that St. Luke was one of the 70 and we get the impression from his writing that the disciple he went about with was Cleopas. You may remember that Cleopas was the husband of Mary the mother of some of the brothers of the Lord; James, Joseph, Simon and Jude. Some texts say Alpheus was the father of James and no one has worked out, as yet, whether Alpheus was a first husband of Mary or whether it was another name of Cleopas.

So it seems that Luke and Cleopas went out together. This makes me think Luke was probably a circumcised gentile convert to Judaism, who then followed Jesus.

According to Hippolytus and I have a vague idea that other Church fathers noted this, many of the 70 left Jesus and stopped going about with Him after His clear Eucharist discourse (John 6).  This falling away when Jesus spoke on Himself as the Bread of Life that the people must eat to have eternal life.

The Jews had very strong laws over food and were understandably perturbed when Jesus started talking about eating Him. Worse still, for His listeners, was the strength of the language He used “chew” and “bare teeth down on”.

Remember, however, that only the day before Jesus had fed them, 5000 of them, with only seven items, five loaves and two fish. He had shown them that He feeds with seven things that are meat and bread. Then He asked them to accept Himself as the Bread of Life.

The Eucharist is a fulfilment of the way God fed Israel in the desert with meat (quails) bread – manna and water from the rock.

At the Last Supper Jesus consecrated the Bread and Wine of the Passover Liturgy into His Body and Blood to feed the world. Many scholars have noted that the Passover lamb, the centre of any Passover meal and liturgy, is never mentioned. While this had led to a question over whether the Last Supper was a Passover, there are those who note that the lamb was there in the Lamb of God giving Himself to the apostles so they could feed the world.

After His Resurrection Jesus walks with two disciples, Cleopas and an unnamed one, probably Luke himself, to the house in Emmaus. Once they reach the house the two disciples, still unaware of the identity of their travelling companion, invite him in.

He takes bread, blesses it and breaks it and then vanishes from their sight. Luke says they recognised Him in the breaking of the bread.

Were these two among those who had stopped going about with Jesus because they couldn’t handle His teaching on the Eucharist? Had they drifted back or even come back because of the Passion? We don’t know. But we do know that if there had been any doubts in their minds before Jesus became the bread in their hands for them, they were gone from that moment as they knew Him in the breaking of the bread.

Accepting the Eucharist on Christ’s terms is still  a challenge today.

Montessori; tower and brown stair extension

The sensory material in Montessori’s method isn’t just so that a child can learn through her senses, but also so that she can train her senses to learn.

Big brother Alex was called in to help complete the tower of cubes and rectangular prisms. In building this and accepting help in building it Heleyna was able to see that the object was more stable with a broader base moving up to a narrower top. She also could see once the tower began to rock that there was a maximum height for this construction  The stability of the tower depended on each object being centrally placed over the one before it and that it needed a firm base. The carpet or learning rug wouldn’t cut it. She had already been building with the 1000 cubes experimenting in stable and less stable structures. We took this structure down and did some of the usual extensions.

Heleyna then got out the tin of animals and asked a lot of questions about each one. Then she decided we needed to use the cubes and stairs to make different habitats for the different animals. She made a desert, forest, sea with caves along the cliff face and a pool for the platypus. I have not read any Montessori lessons or suggestions that include this sort of imagination play but it suited her and was a way to learn a little more about the animals.

We also did some listening with these. The cubes are hollow and the prisms are solid so they make a different sound.

Dysautonomia Awareness Month: So you’re POTSy. What does that mean?

The primary symptom of POTS is “orthostatic intolerance”.  What..? It means that your body objects to you being upright and your heart has a tantrum beating more than an extra 30 bpm when you try to do something  astoundingly difficult such as standing up. In my case my heart tends to jump around 35 to 37 bpm.

There is more than one flavour of POTS so the symptoms not only vary for each of us day to day, but from person to person.

My heart has a particular objection to me doing something like cooking, especially pealing potatoes or (for some reason) making scones.

When I stand up for any length of time (more than 10 minutes) I feel dizzy and sick, my ankles swell and my legs get rashy. Not pretty. (Maxi dresses rule!) Sometimes the tacky will even out but my oxygen saturation will drop. My heart gets my lungs onside to threaten strike action should I try something like going upstairs or trying to stay in the shower too long.

The other symptoms of being POTsy are:

  • disabling fatigue; bone aching weariness.
  • Tachycardia – that’s the fast heart rate. For POTS is goes up by more than 30 bpm when you stand up.
  • severe headache/migraine (I get aura so I can usually medicate it to sensible proportions before a full on migraine arrives) but the back of the head pain seems to be more stubborn.
  • Myofascial pain with trigger points. This is often dx as fibromyalgia and may be why the research is pointing to FM being a dysautonomic disease.
  • Dizziness and near fainting or actually fainting. (syncope is the posh word)
  • Nausea and occasionally cyclical vomiting.
  • Standing up makes you need the loo. (annoying!)
  • exercise intolerance (I find the stairs are like Everest!)
  • Claminess (this usually goes with the nausea for me; yuk)
  • Anxiety (thankfully so far I haven’t had to deal with this)
  • Sleep disorders (yup) Those who can get tested often show lack of delta sleep – that’s the healing one.
  • flushing (yuk. I hate this)
  • hypotension (not me thankfully though my high BP will suddenly drop from high to just below normal which feels horrible)
  • Cognitive impairment (concentration problems, foggy brain, word problems, memory problems)  I entertain many people with my word confusion. Told Avila to put her pjs on instead of saying Beaver’s uniform! And everything is a dishwasher for some reason!
  • narrowing of upright pulse pressure (yes, lots. It’s often around 10 should be around 40) – could be a sign of low blood volume.
  • cold extremities – I have Reynaud’s, but I also have the “cold meat” body parts.
  • low blood volume. (Don’t know if I have this as yet but my very low pulse pressure would indicate it)
  • Chills – I also get uncontrollable shivering even when I don’t feel cold. My body’s temperature control is bust. So while everyone else is wrapped up I’m opening doors and windows desperate for cool air, and when they are in shorts I’m in three shawls.
  • Hypertension (yup, although apparently this is rarer than hypotension) It’s probably a sign of  HYPERADRENERGIC POTS
  • hyperventilation (not so far, but my oxygen sats can drop to 85 on a bad day) I get really breathless at the slightest thing and having asthma means I wheeze like an old steam engine.

    making scones; pulse 145 SATS 86.

  • restless leg
  • Low back pain and shoulder and neck pain
  • noise sensitivity  (occasionally for me with some hearing loss now and then)
  • light sensitivity (very often. I find car head lights at night really painful) I also have night blindness.  Blurred vision and tunnel vision is all part of the daily surprises.
  • problems with balance or gravitationally challenged. I have a tendency to hug door frames, walls and radiators, attack random bookcases and grab random people to keep the floor at bay. Makes me look very affectionate!
  • arrhythmias – missing or irregular heart beats. These feel awful. They are difficult to monitor on my little blue thing as it fuzzies out when it can’t get a regular pulse.

There’s more but that’ll do. Many doctors find the complexity and sheer number of symptoms overwhelming so instead of thinking, “If I find this difficult, how must it be for the patient,” they say “Go away, it’s all in your head.” I don’t think I’ve read a single POTS story or Fibromyalgia story that doesn’t have the part where doctors were brutally dismissive. It’s well past time doctors learned just basic manners.

It is said that Fibromyalgia, ME/cfs, Dysautonomias such as POTS are all “invisible illnesses”.  I don’t know how anyone can watch someone with these diseases and think they are invisible.  It seems to me that we wouldn’t need all these AWARENESS campaigns if people just paid attention.

Seeking Montessori Albums and Great Lessons.

Having read some background into Dr. Montessori’s Method I have started using some of these sites for albums and great lessons.

Good overview list of Montessori Albums free and to buy.

Karen Tyler’s albums get good reviews. Unfortunately I need the Great Lessons and albums aimed at the next level 6 to 9 and 9 to 12.

I do like Moteaco for albums and great lessons.

Cultivating Dharma is great for albums (free ones) and if you check out the site there’s other freebies and good links to help greenhorn Montessori mums like me :)

The Great Lessons overview here lead to a link to Miss Barbara’s Great Lesson pages.

There’s a beautiful Great Lesson here, told originally by Mario Montessori, Dr Montessori’s son. It’s called God Who Has No Hands and I love it.

Montessori Materials

Livable Learning has some great free prinables and if you become a member -$50 for a lifetimes access- there’s even more stuff. I haven’t signed up as yet, but I would consider it for her material as they are very good.

I have bought the stuff I have bought from Absorbent Minds in the UK. I haven’t found anywhere cheaper than this Beware of the postage costs and the VAT, but even with these added AM is generally cheaper than elsewhere.

You will have to decide what you can afford to buy and what you can afford to make or substitute.  I am learning that I should try not to substitute too differently as Dr Montessori worked long and hard to make her design choices.  They were not just random as they are designed for all the senses of the child to be used.

I think I am about ready to roll properly now. My ambition is to have the children become independent learners as soon as possible. If I follow the method Dr. Montessori laid out, then theoretically this should happen and the children will have the ability to make their own discoveries and the self-discipline to work together learn, no matter what I’m capable of.

Year of Faith: Free will and family habits

On the whole I understand free will, and I am getting to grips with concupiscence – sort of. I am still a bit fuzzy on why baptism forgives sins, returns lost grace but doesn’t heal the bentness of concupiscence.

But there are other things about free will that I sometimes wonder about.

There have been times (quite a few) when I’ve seen how someone has behaved or not behaved and I’ve thought, “Oh well, they can’t help it.” For others I wouldn’t be so quick to let them off the hook. It’s about expectations I suppose. That’s why it’s harder to see a professed Christian do something antithetical to His commandments. But then I wonder sometimes how “free” is free will?

Some families, for example, seem to have a particular kind of “flavour” to them. (Can’t think of another word, sorry).  People within that family culture have the same way of responding to things, sometimes there’s a great family, you know you could ask their help in anything, in fact you’d often not even need to ask, and you’d get it, from any one of them.

Then there are families where you know it’s not worth the effort of begging.

So I wonder, what part does free will play in family structure and individual culpability?

I know there’s the fact that to those who are given more, then more will be expected, but I still wonder whether free will is family based rather than individually based.

There’s even some notion in Scripture that free will is town/city and even country based.  “Woe to you Chorizim…” and all that. Then, both Scripture and private revelation show us angels sent to protect a whole nation. In Scripture it’s St. Michael for Israel and in private revelation we find the angel of Portugal at Fatima.

Going back to free will as an individual personal thing, there’s still a lot of factors that play into it. Is it easier to be a good person when life is easy? Or is it actually harder because you can be lulled into a false comfortableness?

Are Christians better people over all? We’re supposed to be. “They will know they are Christians by their love…” stuff like that. Are fallen Christians worse sinners than those who never knew Christ? Or does it just look worse because Christ is so good?

Talking with a friend recently, we had both noticed something about a group we had just taken part in, where it was gentle, relaxed and all the children mucked in together. There was a kind of “atmosphere” that made seem to make everyone, even new comers, feel welcome. There was a genuine caring in the group.

“Do you think it’s because everyone in the group is Christian?” my friend wondered.

We are all from different church communities, but we all have Christ at the centre of our lives (as much as possible …ok, that sounds like an excuse, and maybe it is…but…anyway, back to the question)

I know the Church teaches that Christ in His Mercy will take all sorts of mitigating factors into consideration when we meet Him in our particular judgement. But I also know we’ll have to account for the decisions we have made to do something we shouldn’t or not do something we should.

We are our brother’s keeper, but how responsible is each person for the horrors commited by his country?

How free is free will?

 

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Year of Faith Begins today.

Montessori moment; from The Absorbent Mind on selective mutism.

I am reading The Absorbent Mind which is Dr. Maria Montessori’s seminal work, based on her lectures in India where she and her son Mario lived during the years of the Second World War. I am not sure how this book published in 1947 has become public domain so early, but I am truly grateful. This woman was a genius!  Her understanding of language acquisition outstrips science and her recognition of the child’s need for a respectful and loving relationship with his mother to enhance language is profound.

She said:

Mothers, and society in general, must take special care that children have frequent experiences of the best language. Let the child come with us when we visit our friends…especially where people speak with emphasis and clear enunciation.”

Ignoring this salient advice we have, as a culture, put our babies and children into institutions where they are surrounded by children of the same age and same lack of language skills. When they are not there, we put them in front of the TV for hours on end and then teachers in school complain that Reception aged children (4 to 5 year olds) can’t talk!

Montessori was years ahead of the research in noting that a baby and toddler’s relationship with his mother was the primary source for language development. We now know from lots of research that this is true.

But there is something else Dr. Montessori picked up on, which I think is very oddly ignored by professionals, and that is selective mutism.

I have personally met a number of children who stopped speaking in school. Some were so truamatised by their school experience they stopped speaking at all. Most of the children I’ve met now speak and behave as happy, well adjusted, loved children behave. They have put the trauma of school behind them and are doing really well as home educated children.   There are a number of reasons a child stops talking, and some are very complicated and do get professional notice. However, I think Dr. Montessori’s observations of mute children speaking in her Casa Bambini’s should receive some attention.

We have children in our schools of three and four years of age who had never spoken and then suddenly spoke. They had never even spoken the words of the two year old, they were absolutely dumb and then suddenly they spoke. By allowing them free activity and a stimulating environment they suddenly manifested this power.”

That fascinates me.

Of my six children, one had delayed speech. His speech was so delayed we were referred to a language therapist. The NHS being the way it is, the child’s age and need for language comes second to the waiting list system so we waited a very long time for the appointment. The fact that he was already diagnosed with Failure To Thrive, that catch-all dx for children who are sickly, don’t grow or put on weight and are struggling, was not considered. On the day the letter, with the appointment, dropped through the door my son picked it up, came up to me and said as clear as you like, “Mum, there’s a letter for you.”

You might shrug and say, “Well most 3 year olds could manage that sentence.” And I would agree – except he hadn’t managed anything like a sentence until that moment and then suddenly he was speaking, full sentences.

Why?

I don’t know. But I have a sneaky suspicion my son’s language problem was rooted in how I was parenting him. I did the exact opposite to the things that both Maria Montessori and Charlotte Mason recommended. Instead of spending loads of time with my son, I was sending him to nursery and working my socks off as a student and then newly qualified nurse.

I am not doing a guilt trip here. I had absolutely no other option at the time. We have built an economy on forcing mothers into work. Even now living on one wage is pretty challenging. But the fact is, he was institutionalised, and his language was delayed. Research does show a causal relationship.

While delayed language and selective mutism may seem quite different, there may be a link between them in that they are caused by separating the child from the adult he should be attached to, and forcing them into a group situation that is unnatural and unhelpful.

Montessori wouldn’t have her classes separated by yearly age, but had classes with children aged 3 to 6 and then 6 to 9 and 9 to 12.  The older children helped the younger children and an atmosphere of cooperation was encouraged.

Just about all home educators will tell you that educating our children in mixed age groups makes a huge difference to their language and social development. It’s been known for well over 100 years.

Dysatonomia Awareness Month; Getting diagnosed and some survival tips.

I am one of the lucky ones. I have a GP who listens and is able to make sensible dx.  One of the difficulties in making a dx of POTs and other Dysautonomic issues is that the symptoms are unstable. We can have a good day and then we can have awful days.

I am also one of the lucky ones in that I don’t get the sense of anxiety, I just get shaky, dizzy, nauseous and black outs. I wonder if some POTsies get that and it feels like anxiety, and so the doc decides that’s what it is.

Most GPs have never heard of POTs, and it takes a very good one indeed to be bothered to look it up. Thank God mine is one of those good ones.

A dx of POTS can be a nasty shock for some patients, but I think for most of us it’s a relief “So THAT’S it!” kind of moment. Knowing there is a sensible explanation for what our bodies are getting up to is a relief.

Over the ten years of my illness I’ve gone through the “Dunno, but it will go away” dx to “I told you it would go away, as it hasn’t you are doing something to prevent getting better…” to “Would you like to see a psychiatrist.”

After nearly 8 years I was finally sent to a rheumatologist who spent 5 minutes poking me and said “Fibromyalgia” handed me the laughable info booklet and told me, “it does go away,” as she shoved me out the door.

Survival tip no. 1; DO NOT BELIEVE what doctors say unless they can tell you the research that backs them up.

Survival tip no. 2: Ignorance is not bliss. The only way you are likely to get a dx or treatment is if you do the reading and leg work yourself.  Get aware of the bizarre politics around these diseases and how that affects the care you will be offered or refused.

survival tip no 3: Try not to think too far ahead. Just pray for today, tomorrow will have enough worries of it’s own (as a Wise Man once said). With serious chronic illness, looking ahead can be scary and overwhelming.  “Lord, for tomorrow and it’s needs I do not pray, keep me, My Lord from stain of sin (and a crash) just for today…”

Survival tip no 4: Keep a record.  Your foggy brain, word problems, memory lapses and general fuzziness will make telling doctors what’s going on more difficult if you don’t. This is a complicated business, so having some clear notes and even photos can help.

Montessori; math beads Addition facts to 10 story snake game

Heleyna likes stories to I’ve presented her addition to 10 bead snake game as a story.

Despite foggy brain, there’s only one typo so please forgive me.

Not sure what the good doctor would make of this adaption of her snake game. Hope she isn’t spinning …

Marriage, oneness and sacrifice – from yesterday’s readings.

Yesterday’s readings were about marriage. I love the way the three readings went together so clearly. First we heard how God took a rib from Adam and made Eve who was “bone of my bone and flesh of my flesh” so that marriage from that day forward was that

a man would leave his parents and become one flesh with his wife

This is how God designed marriage. One man, one woman become one flesh.

The next reading was from the letter to the Hebrews and describes how Christ suffered and poured Himself out for the Church. As St. Paul teaches, Christ is the head and the Bride, His Church is the Body and they are “one flesh”. As the Bridegroom Christ gave every last drop of Himself for her sake.

Christ and His Church are One.

The final reading was from Mark’s Gospel where the Pharisees try and trick Jesus by asking about divorce. In this Gospel they ask if it allowed for a man to divorce his wife. St. Matthew adds the detail of “for any reason” as the Pharisees had apparently been discussing the teachings of Hillel the rabbi who allowed divorce for the most trivial reason (much like no fault divorce).

Jesus points out that Moses only allowed divorce in the second law he gave Israel (God gave the first law in the Commandments) because Israel was stiff necked and unteachable.

God says He hates divorce (Hosea??) and Jesus adds that God designed marriage from the beginning to be between one man and one woman and they leave their parents and become one flesh.

No valid marriage can be ended by men.  Marriage is a reflection of the Bridegroom Christ and His Bride the Church. It is why families are called domestic churches.

Those who have split Christ’s body have broken His command and forgotten His prayer that “they should be one.”

Jesus then goes on to welcome the children and insist that children should be welcomed.  They teach us to remain innocent for the Kingdom of Heaven.

In today’s Divine Office St. Paul points out that child bearing can help bring a mother to heaven.

When God calls two people to marriage, He expects them to accept His life in their life and all the little lives He might wish to send. He is life, not barrenness. Children are gifts even when they are part of our cross.

If you ever forget that love is about sacrifice and that it hurts, look at a crucifix. Even the “cleaned up” ones show Christ suffered for us. Thank God He will never ask any of us to suffer to the depth that He did.

And while I’m talking about Christ’s crucifixion; don’t forget to pray for those brave Catholic souls who have endured crucifixion over the last few weeks. There’s a photo going around of an unamed martyr crucified by “Islamists”.

Montessori moment: perfect teachers and dunce children.

The teacher who poses as perfect and does not recognise that she makes errors, is not a good teacher.”

absorbent Mind

Dr Montessori’s deep respect for the personhood of the child is expressed in her insistence that insulting and humiliating children who have made mistakes in their work, in no way helped them to correct those errors. “Experience and exercise alone correct errors..” she says.

In her method the child is allowed to see and adjust their work to correct for errors themselves.  I think, from watching my children over the last few weeks (and remember that’s all the time we’ve been attempting this method) they seem able to better see mistakes far better when they are working with items in space, than when it is just on paper.

Montessori teachers (and parents) need to have good self awareness but also need to be rooted firmly in reality, accepting that we all make mistakes. If the teacher’s role and position is somehow based on the idea that s/he can’t get it wrong, that’s a very wobbly position to be in. In may explain why some glaring errors in homework my older children came home with were not allowed to be corrected.

Part of a child’s maturing relationship with his parents, it seems to me, is the recognition that the grown ups don’t know everything and can get it wrong. Perhaps this process is easier for parents and children as we live together, so even if a parent did want to pretend to some kind of universal infallibility, it wouldn’t hold up for long under the all seeing eye of children!

Montessori goes on to show that children need to be able to see error and to find their way to correcting them. This not only grounds them in reality, but begins to build the tools they need for mathematics and scientific principles.

How far from freedom! If I do not have the ability of controlling my error, I have to go to someone else who may know no better than I.”

Perhaps it is this vital flaw in modern education that has caused so many scientists to publish papers that not only do not control for error, but in which the scientist insists there are no errors – even when they are glaringly obvious. This self assurance and “high self esteem” does not lead to better understanding, but merely to bigger egos.

In order to see errors and correct them there needs to be a guide of “control” that the child can use to see what they are doing. With the control the child is free to work out what they need to do.

There’s something very neat about the Montessori philosophy: simple and kind.

Info for ME/Cfs Fibromyalgia, POTS, Dysautonomia.

October is International Dysautonima Awareness Month.

On 13th Sept (2012) the Federal Drug Administration (FDA of America) held a web conference with ME/Cfs patient groups. The outcomes look very promising (at last) READ an article from someone who was there.

The FDA have said;

CFS is a serious life-threatening condition- As they have finally acknowledged this drug trials can now go through the AcceleratedApproval Process!

Ampligen will be considered for approval  on Dec 20th 2012.

Got fog?  Perhaps the grey and white matter changes in your brain explains that.

UK Potsies provide to excellent Youtube videos to help raise awareness and help those of us with the symtoms whether awaiting dx or already dx get to grips with some of the questions we have.

POTS UK – has some good resources including a simple handout for good GPs.

STOP POTS and Dysautonomia

Dysautonomia Prison is an excellent resource for all sorts of aspects of Dysautomic illness. THESE INFO SLIDES are quick ways to get an overview of what it entails- and there’s a still version here. There is also this enormous list of research articles covering Dysautonmia, POTS, FM and ME among other stuff.

List of UK Specialists for POTS

National Dysautonomia Research Foundation

Invest in ME has an excellent library of documents and gives a good overview of the medical research and the appalling politics that strangles so much of it.

The Hummingbird Foundation for ME

The CFIDS/ME Patient Memorial List. This is a place to remember all those who have died as a result of this truly hideous disease. It was compiled, not just to remember the dead and show them the respect they so often hadn’t received in life, but as a type of proof to the ignorant and unethical “powers that be” that this is a disease that needs research, treatment and care for those who suffer. It is to my mind, deeply shameful, that we need a list of the dead before this debilitating illness can be treated properly.

National Cfids Foundation; Cfids stands for Chronic Fatigue Immune Deficiency Syndrome. It’s a more accurate ‘label’ than chronic fatigue syndrome.

Phoenix Rising - a hub for research and advocacy for ME/cfs Fibromyalgia and Dysautonimic syndromes such as POTS – with a great forum.

Cardiac Insufficiancy Hypothesis from ME Soc of America.

Research paper on ME with OI  and cardio probs (pubmed)

Research paper on how Fibromyalgia is probably a form of Dystautonomia! WOW! And THIS PAPER continues on the same theme (pdf)

As dysautonomia effects so much, including immunity and autoimune systems it’s not surprising there is a link with diabetes. This is a short paper on dysautonomia and peripheral neuropathy in type 1 diabetes. I haven’t found anything specific yet on genetics and autonomic disorder but I bet there will be some at some point.

Friday freebies: music lessons around the web

We just discovered these FREE piano Lessons for Kids which Ronan has worked through pretty quickly. It’s good beginner set of lessons with more to come. You pay for the paperwork downloads if you want them. For us it’s a nice “extra” to go alongside  the Aventus lessons (which I am paying for).

Classics for Kids is an old favourite.

StringsLessons gives links to some good Youtube vid tuition for both ‘cello and violin.

Now I have to warn you that I don’t think online freebies or the ones you pay for will be enough. While there seems to be a way of learning just about anything from Youtube, there are some aspects of playing a musical instrument that I think will mean in the end you will need a live tutor, either via skype or in person. There are things like hand psotiion for piano and keyboard and how to balance a bow for strings that I think may need someone to show and correct personally.

Awaiting the Cardiologist POTS specialist. My personal PoTS approach.

http://www.dysautonomiaprison.com with thanks to Jane for her

hard work.

I have recieved a tentive dx of POTS from my GP after I showed him the results of two Poor Man’s PoTS tests and two days of BP and pulse. It does seem pretty clear that’s what’s going on. I discovered that not only does my pulse dip nicely to around 88 when I’m lying down, but that if I sit still just reading with the kids for more than an hour I can get it to around 88 to 91.Usually my seated pulse is 100.From lying down to standing up my pulse went from 88 to 120 on the second test which is over the 30 bpm threshold so that indicates Postural Orthostatic Tachycardia Syndrome. PoTS is a posh medical way of saying my heart objects strenuously to me standing up.

While I await my appointment with a cardiologist who knows about PoTS I have a system for trying to keep on top of it.

I have a little pulse oxymetre which shows my pulse and oxygen saturation. Once my pulse goes beyond 125 I will sit down until it’s dropped back to 100. I’ll also stop working upright if my SATS drop to under 93. Once my pulse goes over 125 the nausea is harder to ignore, my balance is much worse, and I tend to black out. Not everyone with PoTS faints. In fact most don’t. Those who do tend to have NMH as well. That is Neurally Mediated Hypotension – so their blood pressure drops dramatically.

I seem to have the opposide problem. I have hypertension but not consistently. My BP is shambolic frankly. At times the pulse pressure is very narrow.

I get the pooling in my legs, especially at the back of my legs for some reason, and have a rather unlovely POTS rash. Marvellous.  It is wise to keep your legs elevated when sitting, and I know I need to get into the habit of doing this.

So, standing up for any length of time is very difficult. Being stood up for half an hour for the “test” was pretty horrible, but I did it in the name of science – and getting a proper dx.

Research paper Hyeradrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders which may link in nicely with this piece of research.

Year of Faith; obscure people of the Bible and Early Church Fathers.

I love the more obscure saints.

In this morning’s Divine Office (Office of Readings) St. Paul mentions his brother in faith Epaphroditus who has been very ill, close to death, but through the mercy of God had become well again.

Not much is known about St. Epaphroditus, but there are some facts to be gleaned. His name is a derivative of “lovely” from the goddess Aphrodite, which implies he was a gentile pagan convert to the faith. Paul calls him “Apostolos” which is the Greek for “sent out” and the title of all the first bishops of the Church. Bishop was the word for overseer, one who cared for a Church area. St. Hippolytus has Epaphroditus as one of the 70(or 72) disciples sent out and lists him as bishop of Andriace.

It’s interesting to see his name in the list along with St. Luke, as this shows many gentiles were already part of the embyonic Church before her birth at Pentecost. I assume that they were circumcised and maybe were part of those gentiles who had wanted to pray in the Court of Gentiles at the Temple, only to find their prayer life seriously hampered by the fullscale market that was there. Jesus came along and cleared the Court of the Gentiles, taking care of His beloved ones :)

There’s quite a bit on obscure saints in the list of 70/2…

October; Dysautonimia awareness. Never heard of it? Get aware :P

October is the Month of the Rosary, so get out your beads and Bibles and pray for all those with autonomic disorders as October is also the month of International Dysautonomia Awareness.

You may be groaning and thinking “not another awareness day/week/month!” And I suppose I don’t blame you, but the lack of awareness over autonomic nervous system disorders is almost total.  Sadly, this lack of awareness can lead many people with ANS disorders getting short shrift from doctors and shockingly uncharitable treatment from family and friends.

It’s a sad reflection on families it seems to me, when I see so many stories of people being labeled as “lazy”,  “negative” and “attention seeking” or whatever.

While the scientific and medical understanding of dysautonomic disorders is still pretty sparse, there is a growing consensus that Fibromyalgia is either part of an autonomic disorder or is one. There is also growing evidence for ME/cfs is linked with autonomic dysfunction. I can’t find studies on diagnostic trends for FMS and ME but we do know that the number of children with autism is rising at a rapid rate and that their autism is serious enough that “better awareness” in no way adequately explains the increase. Something must be triggering all these autonomic failures. I think we have quite a wait to find out what it is.

I will be posting on this over October. As I’ve recently been diagnosed with PoTS, which is very, very common in Fibromyalgia, I’m particularly interested in the research that is beginning to show Fibro and ME are either co-morbid with or are in themselves dysautonomias.

St Therese of Lisieux

It is the feast of St. Therese of Lisieux, who was recently made a Doctor of the Church.

It is also the first day of the Year of Faith, declared by Papa Beni.

I am a very recent convert-fan of St Therese. I am afraid I had avoided her for many years, thanks, largely to the dreadful saccharine saints book I had as a child.

My friend Amanda suggested she was not a sloppy, sentimental saint at all, and that I should give her seminal work The Story of a Soul a chance. I listened to this well read version HERE, and I was converted. She has a depth of solid common sense and profound spiritual awareness that is simply good for the soul.

So, if you are looking for something to read and/or listen to that will kick start the Year of Faith for you – this could be it.