Monthly Archives: May 2013

Drug Juggler (pt II) and CfSAC testimonies for May 2013.

545749_454380617911565_1095774106_nA lot of people get to the point when they just wish they could ditch all the meds. I’ve seen people insist that their body will be able to deal with whatever is happening and self-fix. I wish that was true!

Too many people have bought into the superstition that “science knows all,” and “science will solve all.” This, much like the Cottingley Fairies doesn’t bare too close scrutiny. There are few doctors (my GP is a golden exception) who like patients reading the research. Many people think it’s because doctors like the mystique of looking like they know something we don’t. This may be so, but the more research and peer reviewed published papers I read, the more I think doctors don’t want us to read the stuff because so much of it is shockingly badly done! The standards for publication are so bad it makes me wonder if these papers are actually read by the “peers” who reveiw.

On top of that, diseases like ME and FMS are sucked into shoddy political situations meaning there is little to no research funding and then what is done is deliberately skewed to suit political ends. Science done honestly might have some answers, but vested interests, power grabs and pure corruption mitigate against this.

I do think you should read the research on the drugs the docs are telling you to take even if the research on your disease is difficult to wade through or judge.

inhalers; things you should think about. Even adults do better with a spacer or volumatic. If your doc hasn’t given you one, ask. I have a small one that fits in the bottom of my drug box. You sh

ould also have a peak flow metre and I recommend a pulse ox meter. I’ve had O2 Sats at 73 without really noticing the drop. I’ve mentioned before that steroid inhalers can have side effects, such as voice loss so drink water and gargle after use. If you are treatment resistant like me, most docs advise using Salbutamol inhaler regularly before the steroid. This is because it is supposed to relax the airways so that the next inhaler is better absorbed. (Montelukast can cause voice loss too apparently.)

Amitriptyline: Low doses of drugs like Amitrip or Nortrip have pr

oved very useful for the management of neuropathic pain. The side effects can be pretty yuk even at low doses. I’m on 50mg which is on the high side of low. To quote Dr, Patrick Woods whose research into FMS has shown the dysautonomic and hyperadrenal side of it (he sees FMS as a form of hyperadrenergic POTS) “wake up a fat zombie.” Yup, that’s about right I’m afraid. Add in steroids and you wake up a very fat zombie.  I have been fortunate in the zombie side hasn’t been too bad once I got used to the drug. Opiates on the other hand were horrible

Positivity is Not a Cure

and didn’t really help the pain that much either.

One of the other side effects of Amitrip is hypertension. At antidepressant doses (over 75mg) hypotension is more common, (at least it was among the depressed patients I nursed who were on antidepressant doses back then. Now Amtrip is rarely used for depression). It is likely that part of my hypert is drug induced because of Ami and the steroids.

One of the noted side effects of Ivabradine is hypotension which is why it isn’t prescribed for people with POTS and NMH (neurally mediated hypotension). Unfortunately for me the Ivabradine hasn’t produced this side effect. Typical!

The other commonly used drug is Gabapentin which, as the name implies, regulates gaba in the system. The drug has the added advantage of being an anticonvulsant. I haven’t changed to it as yet because so much else is going on and I haven’t had a seizure since last summer.

The other reason I haven’t changed is the Amitrip is working for me and it took a very long time for me to get pain levels to manageable.

Over the Counter stuff: I take CoQ10 and Magnesium.  A lot of studies have shown ME patients have low levels of both, hence the high number of heart failure deaths and poor immunity. It’s even hit the MSM

Maybe one day we will have access to drugs like Ampligen and Rituxin and actually get our lives back. Until then, we must mix our cocktails and get by.

Some reading: This excellent article Some Inconvenient Truths that shines and uncomfortable spotlight on the “Wessley School”.

THIS is a great overview of the Spring 2013 CFSAC meeting You can read Jenny Spotilla’s excellent and rather heart breaking testimony HERE as she shows a severe drop in funding for ME/cfs which is beyond shameful as more info is coming through showing how sick many people are, and how many are dying of this horrible disease.

Amy Squires Testimony

Jeanette Bermeister’s Testimony where she refused to use the term CFS (good for her) and speaks of how well she got thanks to Ampligen which the FDA have refused to licence for ME even in the light of recoveries (Bob Miller springs to mind)

Mary Dimmock’s testimony

Also READ THIS especially the quite frankly weird remarks by Dr Unger who thinks doctors are too dim to understand the CCC. WHAT? Even I understand it!

While a lot of what happens at CFSAC meetings are obviously American centric, it would be a mistake to think that those of us in other countries are not effected by what happens, and doesn’t happen, as a result of these meetings. Interestingly it was raised at the 2011 Nov meeting that Wessley, White et al were working for the Medical Insurance companies when they began their harmful campaign to label ME as some kind of somatosatation disorder, thus reanimating the corpse of Freud with all the nasties involved.

ME/cfs awareness month ends tomorrow. But the disease goes on.

Finally here is an amazingly good and easy to understand lecture on dysautonomia POTS, NMH etc from a biochemist who has hyperPOTS and NMS It’s nearly 2hrs long so I recommend watching it in bits. But you will learn a lot!

The vid maker and a discussion of the vid is found HERE at DINET

I am still awaiting tests for hyperPOTS to go with the IST.  As I’m already on Ivabradine I guess there’s no rush.

ME/cfs, Voices from the Shadows.

Today is the last day of ME/cfs Awareness month. I’m posting the introduction video for the documentary “Voices from the Shadows” that tries to give a voice and raise awareness for those with Severe ME. Please pray for those at this end of the disease and for all of us who are heading that way with some serious trepidation.  The Intro is less than 5 minutes. Watch and pray.

If you know someone with ME please take the time to watch this. Don’t listen to the MSM. They have no idea.

Later I’ll post part two of drug juggler.

The hedgehog came in from the cold.

P1020644On Sunday Alex and Anna walked home from Mass and found a hedgehog lying in the driveway looking a little worse for wear. As they were off at an unearthly hour the following morning for their Honeymoon they couldn’t take care of him. The RSPCA were not available so they brought him to us.

To be honest, he seemed fine when he arrived. He mooched around the rabbit hutch happily and tucked into some cat food, licking his lips and polishing his nose enthusiastically. We gave him some tepid water as the Hedgehog Rescue info said not to give cold water. He enjoyed his drink and went to bed.

As the following day was a Bank Holiday we continued to care for him and although he occasionally closed one eye and dropped his head to one side, he didn’t seem that sick. He squeaked in his sleep, but we didn’t know if that was normal.

So on Tues we were to phone the Rescue Centre hoping they’d check him out and if all was well, we could release him back near where Alex and Anna live.

I’d lost my voice again and Iona was out so we waited for her to get back.P1020658 Montague, as Anna had named him, had slept all day and not eaten the night before. He was restless, getting up and then falling asleep again, but hedgehogs are nocturnal so we weren’t too fussed. As it was raining and he had come out of his bedroom to sleep I kept going out to check him,

Iona came home and said she would take him to the vet up the road. But when we went to check him again, poor Monti had died.

It may have been a virus. It was sad and Avila cried a lot, poor kid, but we gave him a warm bed, good food and a safe place for his last couple of days, rather than him dying at the side of the road.

So Montague, R.I.P.

Autoimmune diseases on the rise rapidly. No one seems to know why and CFSAC meetings…

Reports have been bandied around for some time now showing that autoimmune diseases such as type 1 diabetes, Lupus,  and celiac are on the increase across the globe. Type 1 diabetes has increaed by 23% between 2001 and 2009.

Asthma is another disease that has not only increased rapidly over the last 30 years but according to Dr Gailen D. Marshall of CFSAC the complications of asthma are increasing. I am now one of those patients with steroid resistant asthma.  Those of us with this form of asthma are supposed to be rare, but “rare” is becoming common it seems. I have IST which is supposed to be “rare” but there’s a lot of us out there.

The usual “blame the patient” stuff is rolled out as “high salt diet” and “junk food” and “alcohol abuse” etc. gets bandied about, but this falls flat when you realise the increase is global and so that includes areas where such diets and lifestyles either aren’t there or aren’t even available. Not to mention the fact that most of us don’t tick those boxes anyway. It is a cause of irritation for me that when a history is taken and I don’t smoke, eat junk or abuse alcohol the view is that I can’t be ill then.

This goes along with the number of research outcomes that show an autoimmune aspect to ME. Whether ME is purely autoimmune or a nasty mix of stuff isn’t clear. It won’t be made clear in the foreseeable future thanks to the shameful lack of research funding but the clues are there.

I’ve been watching last years Youtube vids of the CFSAC meeting 2012 with a growing sense of despondency.  I am awaiting this years meeting vids to go up but going by some of the reports from those who attended, it may be better if I never watch them.

I am saddened by the same stories from patients told over and over which seem to be words aimed at walls not people. But the news that Dr Unger believes that the Canadian Definition of ME is too complicated for poor doctors who are “frightened by it’s complexity!” Seriously!!!

The call for the Canadian and International criteria to be made the criteria for the disease goes on.  It needs to happen. Thankfully the biomedical research is showing promise. It shows that excellent results can come even where there is so little funding.

Home Education: Friday Freebies

Ifrugal friday freebies‘ve been mulling over whether to and how to introduce the children to philosophical thinking.  TEACHING CHILDREN PHILOSOPHY looks like a good site using children’s books such as Frog and Toad stories as a jumping off point. THE HOME PAGE  has good introductory info.

PHILOSOPHY FOR KIDS also looks promising.

Getting children thinking about the action and feelings of story characters if a good start to teaching virtues. You don’t need to hammer the children over the head with “meaning” or “lessons”. Aesop managed to tell many a tale without a moral 2×4. The idea is to get the children to see for themselves what the difference between right and wrong is through the stories and how they relate to life.

Free Montessori printables and lapbooking printables

Montessori Printshop has some free and a lot to buy.

Some free stuff from Montessori for Everyone.

This site has some good stuff of a sort of Montessori nature

Reptile cards

This Blog has some free world map printables and other stuff

I love THE HELPFUL GARDEN what a talented and generous person.

Life Cycle of a Plant

This looks good for pre-school Montessori 

JMJ Publishing has some very good freebies

Homeschool share lapbooks

Notebookingpages has free and to buy resources

The Drug Juggler (part 1)

The person who takes medicine must recover twice: once from the disease and once from the medicine.”

Dr William Osler

Drug smugglers might think life is hard on them, but drug jugglers are walking a high wire with no net.  When you have an illness that likes to open the door to all it’s friends and relations, you can soon find yourself on a shocking amount of medication. Chronic illness has a really nasty habit of inviting a whole sack load of pathogens to have a rave in your body. This means we need a ridiculous amount of medication as more co-morbidities set up residence and then the drugs we are given can have their own nasty side effects and open invitation to even more infection.  So drug juggling becomes a way of life.

P1020587Let’s take some of the symptoms that go with the Shambles dx of ME/Cfs + fibromyalgia + asthma + hypertension + dysautonomia IST. Which is what I have been stamped with so far. One of the major, and irritating symptoms is brain fog, and memory loss. That means juggling meds as to when and how to take them can be a bit challenging at times. Coupled with varying  vision there is a danger of accidents.

So organise the meds. Make sure you know what you are taking, how much and when.  You can buy those plastic boxes but they are sooo ugly and just scream “you’re a sickie!”  My oldest daughter bought my a glittery makeup bag some time ago but I’m on so much more stuff these days it wasn’t able to hold it all.

So I have bought a makeup box. Don’t laugh – this is something you can carry around without

P1020589

it being obvious you are taking a truck load of drugs. It holds everything including the arthritis gloves and bandages for bad pain days. It’s kind of “drugs in style”.

Knowing you can just take what you need even with the worst possible brain fog is good.

Something like this box is ideal. The bottom layer will hold boxes of drugs you aren’t using right now, and things like arthritis gloves and bandages. The middle layer will hold inhalers, and/or morning and afternoon meds  and the little top boxes will hold (in this case) six nights worth of meds.

The other thing I am going to do is have a list of meds on a sheet with a list of dx and you should add sensitivities and allergies too.  This will make things a lot easier if you get shipped off to hospital.  The last time I was in an ambulance I found it really difficult going through it all with the paramedic as I just wasn’t very with it at the time. If you have it all written down that will cover all eventualities.

Side Effects

Another quote from the redoubtable Dr. Osler

One of the first duties of the physician is to educate the masses not to take medicine.”

We live in a strange culture that sees any kind of suffering or illness as something to be medicated to death. Every winter, certain over the counter meds get advertised on TV in such a way that is laughably inaccurate (how it’s allowed I don’t know). Got flu? Take this magic snake oil and return to work the next day!  This patently false advertising gives the impression that if you feel ill, there’s an immediate cure out there. Well, folks, there isn’t.

Taking medication should be done only when you really have to. All meds have side effects. For those of us with a nice complicated set of chronic illness there seems to be a bent towards drug sensitivity. This means you need a patient doctor who will do some trial and error.

Take hypertension; there’s a number of drugs I’m on or have to take on a regular basis that actually increase BP. However I’m also on drugs that are supposed to lower it. The wild fluctuations I have in BP are more likely ANS related than drug related but there’s still some chance the drugs are up to no good. That’s one of the challenges; working out what is making the symptoms, the diseases or the drugs?

Steroids can cause hypertension and batter your immune system leaving you open to all sorts of opportunistic infection. The fact that so many of us who need steroids already have poorly functioning immune systems doesn’t help.

You really do need a good, trustworthy, sensible doctor to help you tiptoe through this minefield. Be aware of what your meds do and what they might do that you don’t want them to do. I am on antibiotics more often because I’m on steroids so often. I will discuss ways of coping without steroids for periods of time so I don’t have to have quite so many infections.

Oral steroids are the worst offenders (Prednisolone is my poison) but I am on inhaled steroids too. Don’t forget that they too have side effects. I frequently loose my voice for example. Some of that is the disease and some of it is inhaled steroids. If you inhale Seretide or one of the other steroids make sure you gargle and rinse afterwards. It might to help, but it might avoid some voice problems.

Recent research suggests that Vit D could help even steroid resistant asthmatics. However, the media is always grossly simplistic in it’s reporting. First of all Vit D supplements vary humungously. Also you need Vit A to process Vit D and you need exactly the right amount of Vit A to process Vit D. What isn’t clear as yet, is whether we are lacking Vit D or unable to properly process it. Vit D deficiency is found in ME patients too; still lots of unanswered questions, but interesting progress.

That’ll do for now.

Forgiveness. What is it and how do you do it?

Having had to hear the rather sad calumny against people with severe chronic illnesses like FMS and ME that we are ill because we don’t forgive and this. along with being angry and lonely, has made us ill, I’ve been reconsidering the whole subject of forgiveness.

Jesus made it a commandment. “Forgive your enemies,” and “Forgive your brother”, (meaning all relatives and friends). He said this in various ways at various times. If it’s a commandment (and it is) then it’s something we must do with our will, not just a feeling. In His commandment Jesus offers no wiggle room such as “forgive anyone who says sorry” or “forgive those brought to justice”.  He is, in fact, rather stark in His commandment. We are just to forgive.

There was a tendency I remember of saying “forgive and forget”. This is probably fairly easy for someone like me who can’t remember much anyway, but for someone with functioning memory that’s not possible. For someone who has been systematically abused, it’s completely impossible. You can’t tell someone to “forget” as memory isn’t under the will. You can help someone not dwell on bad memories, which is part of the will, but you can’t make someone forget.

Back in my psychi nurse days a friend of mine noted that many of the patients with schizophrenia had been seriously abused, often in childhood. The question  was raised whether those with a predisposition to such a serious mental illness could be tipped into illness by abuse. There are no answers to this; and anyway we knew just as many patients who had lived normal happy lives until the disease struck. We do know that schizophrenia is rooted in having too high a dopamine uptake, but why this happens and how is still a mystery. While modern medicine loves to blame patients and their families, there is actually nothing to back up this “blame the patient” approach in psychotic illness.

But there are many people who have very good reason to be unhappy, anxious and angry about the way others have treated them. So what can they do to forgive those who have wounded them either through selfishness, thoughtlessness or maliciousness? How do we obey the command Jesus gave us to forgive? And why did Jesus insist on it anyway?

In the Old Testament God says, “Revenge is mine” (Deut 32:35). That means it isn’t up to us to take revenge or want revenge for the wrongs done to us. If we can pray for those who persecute us (Matt 5:44) then we are on the right way to forgiveness. If we can genuinely hope for the best for the person who has hurt us, for heaven for them, then we have made the act of will to forgive.

Some people have said it’s easier to forgive another’s sin against us if we understand our sins against God. This may be true up to a point, but there are some sins that others perpetrate against us that we wouldn’t dream of doing, no matter how badly behaved we might be. It isn’t helpful to measure our sins against sins that are so monstrous we couldn’t even consider committing them.

All we can do is accept we too sin. Then we must be sure we ask for forgiveness for our sins. But if the person who has hurt us is never sorry all we can do is leave it in God’s hands.

And that’s why Jesus commands it. There’s nothing more freeing, more peace bringing than forgiving the other and putting their salvation into God’s hands. The act of forgiveness is healing to the person who has been wronged. That’s the root of Jesus’ command. Forgive your enemies because it’s good for you.

If we believe the terrible warnings Jesus gave us and the witness of saints over the years we know with deep sorrow that hell is not empty. Jesus offered forgiveness to anyone and everyone. All we have to do is accept the gift. If we offer the gift we cannot force the other to take it, any more than Jesus forces them to take His forgiveness. If people don’t want to be sorry or accept forgiveness they don’t have to. But you surely can’t look at a crucifix for very long without realising that He did that as He did that for each of us, our forgiving others can’t be so hard, especially as He will give us what we need to do it.

Forgive even those who project their own problems onto you. Resist the temptation to wish for retribution or even justice. Pray and ask for mercy for them as you would want mercy for you. And resist the other temptation that comes with being hurt by someone who does something you would never dream of doing. Resist feeling superior, even if they never say sorry.  While being so magnanimous with your forgiveness don’t trip into the pit of the Pharisee. 

Forgiveness is really wishing well for the other, wanting their redemption.  Those, rather strange, pseudo-christians who scream damnation on others have absolutely no idea what they are doing (or at least I hope not). Pray and leave it up to God. 

This forgiveness malarkey; it’s not as easy as you might think is it?

For those easier to solve moments  “Hey now, hold on, there’s a better way to solve this conflict, hey now, hold on, there’s a better way —-hug it out, hug it out..

Home Education: Wonder and beauty before taxonomy and dissection

“if you go back to Greek, there is a word that does not exist in the English language, the word kalon, which means both “good” and “beautiful” at the same time, and it’s specified by another word, kaiagathon, or k’agathon, which is a contraction of to kalon kai to agathon, “the good and the beautiful”. Great marriage.” Peter Kreeft

P1020526The children love to go to the park or walk in the woods and one their favourite activities (especially for Heleyna) is to “look for nature” wherever they go. I want them to have a sense of wonder when they look at nature and to see it as beautiful and amazing. So far I think they do. I am not big on poetry and romance (in the old sense, well, and the new) but I do like the philosophical view of beauty as necessary for us to grow.

Charlotte Mason was very keen that children keep a nature journal in which they drew and stuck pressed flowers and such like. In this way they learn to see both the beauty and the “science” of nature. Part of this was based in her respect for the personhood of the child.

It’s the same with music and art. I think it’s very important that the children learn to listen to beautiful music and see lovely art works before I start explaining the methods involved. In learning to draw or play music it should be on a foundation of having had time to simply listen and look.

If the ancient philosophers are right and beauty is not so much in the eye of the beholder, but something inherent in itself, I want the children to have the time to see and hear and be, long enough to appreciate it. I think in giving them time to be with something beautiful they can acquire an appreciation of it, and can learn about it, taking it apart, later, if necessary, later. I think it’s a bit like the way a child learns language through first acquiring it in his relationship with those around him, especially his mother. A child can acquire a love of beauty through a relationship with a natural environment. Isn’t there some research out there about depression being linked to lack of greenery in housing estates?

With the Montessori approach to nature there’s a more scientific bent, which is good, but I want the children to appreciate creation as a whole, as well.

This is something that’s been floating about in what’s left of my foggy brain for some time. It began with an online conversation I saw between a home ed mother and a primary school teacher. She spoke of taking her children out to the woodlands and countryside so they could be outside and enjoy the place. She talked of stone walls and lichen and mosses. It all sounded lovely.

The teacher took exception to this. He said he took his group of children out and  by the time they trooped back to school they had identified and marked off various forms of lichen. I assume he armed them with worksheets, for this.

Perhaps he didn’t mean to come across the way he did, but I remember thinking how cold and meaningless his “lesson” seemed compared to hers. It also made me wonder (again) about the impact of closing children up inside institutional buildings with little exposure to the outside world. And then only exposing them in very restricted adult controlled ways.

One major advantage that home ed has over most other forms is time. We can take a summer day and let the children be out and about in it, without any time constraints  There are plenty of cold wet days to do workbook work; and the bright days are not so frequent we should squander them. Anyway, as a good science teacher should know, kids need sunlight to process vitamin D.

I can’t help thinking that many of the great Victorian and Edwardian naturalists that opened so much new scientific discovery to us, would never have been as observant or as in love with their subject of study had they only ever been exposed to the outside world in small time segments with a worksheet on a clipboard.

I think Charlotte Mason had it right. Children need time to be with nature before they need to analyse it. There is enjoyment and interest in learning the names of different mosses and lichens, but if a child is made to spend too much time peering at a stone in a wall and then writing on a worksheet, they are not getting the bigger picture they would have if they had time to stand and stare.

In gratitude for family and friends.

Psalm 88 comes up often at Compline in which the psalmist faces his ill health and gives God a bit of telling off. One line stands out as, because of how sick he is he says, “You have taken my friends away from me, and made me repulsive in their sight. I am confined and cannot escape.” (Ps 88:8).

Go to any place on the internet where people speak of their experiences of serious chronic illness – especially not so well understood ones like fibromyalgia, ME (cfs) or dysautonomic disease like PoTs, IST and all the rest that goes with them, and you’ll see the same stories over and over. So many people tell of how friends and family not only abandoned them, but actually humiliated them over how sick they were.

The most common idiot thing to say is “But you don’t look sick.” WHAT does sick have to look like? I mean, most of us exhibit all sorts of weird “sick” signs. Perhaps the fact that I twitch and jerk randomly, have colour changing body parts; have lost the skill to both move and breathe at the same time, and of course there’s the in-yer-eejit-face wheelchair, has prevented most daft comments (Doctors are another species so I don’t count the bizarre and inhuman things they say).

Story after story in which the person struggling with the disease that has stripped so much of their life away, has to face being rejected, taunted and ridiculed by their own family and friends. What on earth is going on?

Many people lay the blame at the feet of doctors who have been rude and dismissive; which should be a matter of deep shame to medics, but isn’t. Family members still stuck in the idea that “doctor knows best” then feel permission has been given to behave in the same way and so the nastiness spreads. Then there’s the ability to wiggle off the hook of having to love and care for another person. I am sure not wanting to feel responsible makes a lot of people cruel.

Having a chronic disease is a bloomin’difficult business. It’s bad enough when support isn’t there when it’s needed, but to be actively abused for being ill has got to be the worst possible experience.  THIS BLOG POST sums up what it’s been like for way too many people. Research from a couple of years ago shows that one in ten suicides are because of chronic illness – but read any post by someone feeling suicidal with chronic illness and almost always it’s nothing to do with how sick they are, but how others are treating them.

I am so grateful that I haven’t been through the level of rejection and stupid behaviour that so many others out there speak of. I’ve lost a couple of fair weather friends and family, but most people have been fine with me and very supportive.

I am quite sure plenty of people in my life have no idea, or only a vague notion, what chronic illness does to me, but I don’t mind that. Why should they have to understand it? But no one has been cruel or unkind to me, thank God.

Like nearly all FMS/ME/Dysautonomia patients I’ve faced a barrage of rude, arrogant and downright nasty medics. That’s more than enough to cope with thank you very much. I don’t need more. I don’t get why people feel the need to dismiss the suffering of others. What’s that about exactly? 

Ten years into this hideous set of illnesses I’d be very tempted to use rude words in response to someone who tried to pour salt on my wounds.

My oldest children have been brilliant right from the beginning of this. They’ve had to contend with a lot from me and deal with their younger sister being extremely ill for the first three years of her life too.

I am very grateful that I have good Christian people around me who have a good Christian attitude to life.

b213-thank-you-cheery-lynn-doily-die-4674-pSo to all you friends and family who have never said “But you don’t look sick” or “You should try and get out more,” or “Have you heard of so-n-so the brave cripple..” or “have you tried this miracle cure?” or  whatever other useless, unhelpful thing,  I just want to say THANK YOU.

Fatima, the Pope and a touch of eschatology.

miracle_of_fatimaIt’s the feast day of Our Lady of Fatima today, commemorating her first appearance in the little town of Fatima in Portugal to the three children Lucia, Jacinta and Francisco on May 13th 1917.

Today,  96 years later Pope Francis will consecrate his pontificate to Our Lady of Fatima.

Blessed Pope John Paul II dedicated himself to Our Lady of Fatima too, especially as he saw her hand in saving his life on May 13th 1981 when he was shot.

The apparitions at Fatima have to be one of the most important visits Our Mother has made to us over the last 2000 years.  Her promise that the War would end was fulfilled pretty quickly and the solders returned home. But she had made a stark warning. Men needed to repent, abide by her Son’s commandments and basically get our act together or there would be another war. She made it clear, that just as Scripture tells us, wars happen as a result of sin. She also warned that Russia would spread her errors over the world and nations would be annihilated.

Even after the spectacular miracle of the sun seem by over 70,ooo people, some many miles away, there wasn’t the right response to her plea. She had told Lucia that a strange light would be seen in the sky to herald the new war.

On Jan 25th 1938 an unusal aurora borealis was seen so far south that it caused fire engines to be sent out around London to find the source of the red lights filling the sky. Scientists made note of it’s unusual stretch and discovered it was caused by a surge in sunspot activity.

Lucia wrote to the Holy Father from her convent saying this was the sign.

Two months later the Second World War began.

Lucia became very ill and it looked likely, at the time, that she might die. In obedience to her bishop she wrote down the Third Secret and it was sent to the Vatican with instructions that it should not be told to the world until after 1960.

For whatever reason, Pope John XXIII read the message and did not announce it. The secret wasn’t announced until after the shooting and amazing survival of Bl. Pope John Paul II. Unfortunately the late announcement, coupled with a somewhat over enthusiastic view from Cdl Sodano that the prophecy was completed – when the vision hardly showed the events of 1981 has resulted in a large number of disgruntled and concerned people thinking that a) there’s more the to the 3rd secret (Lucia said there wasn’t) and b) the consecration of Russia hasn’t taken place properly yet (Lucia said it had) and c) there’s more of the secret we do know to be fulfilled (this seems very likely as only Cdl Sodano seemed to think it was all done with).

It’s a sad fact that all the dire warnings Our Blessed Mother gave us at Fatima have come to pass. If only we had listened.  But the message of Fatima is just as important today so we can still respond to Christ’s call via His Mother. Pray, do Penance and try to conform our lives with His will.

The fact that, despite how much we ignore her, God keeps sending Our Blessed Mother to mother us shows the amazing love, patience and mercy He has.

Obviously we are not supposed to go chasing after private revelation without due prayer and discernment and we are supposed to hear what the Church has to say on them. We know the Church never rushes to judgement on these matters. So much investigation takes place I wonder sometimes if the message is lost in the long wait. The official recognition of some of the apparitions at Kibeho in Africa came after the prophecies had been fulfilled.  I assume enough was known about the messages to have prevented the fulfillment of the horrible prophecy of the genocide, if people had repented as Our Blessed Mother asked.

As our Holy Father dedicates his pontificate to Our Lady of Fatima we await the full triumph of her Immaculate Heart giving glory to her Son.

Jimmy Akin’s 9 things to know about Our Lady of Fatima

Third Secret and the Angel Emmett O’Regan

Third Secret and Millenium There’s quite a bit on Unveiling the Apoc, so take a look around.

 

ME/Cfs, Fibromyalgia, Multiple Chemical Sensitivies, Gulf War Syndrome AWARENESS DAY

62608_351128568321966_500473882_nMay is the month for raising awareness of all sorts of so-called “invisible illnesses.” I’ve said before what I think of people who can’t see another persons’s cross. Not seeing it, doesn’t make it invisible.  The fact that these awareness campaigns are needed irritates me. But hey ce la vie. It’s what Douglas Adams referred to as “Somebody Else’s Problem” the SEP field that made someone invisable.

The one disease that I’ve been thinking about recently is Gulf War Syndrome. The name is a silly label covering the diseases presented, originally, by solders coming back from the Gulf War. I don’t know as much about this illness as I would like to. Like ME it is riddled with controvesy and obvious vested interests. The needs of the sick veterons got kicked way down the priority list.

But one of the good things about injustice, is that it always bites the handler in the end. Meanwhile people with a mixture of serious illnessnes are getting together, supporting one another and pooling resources so that even if there isn’t much research, what there is, can be worth while. These days there is quite a bit of research and a good deal of it is of high quality. (There’s still an astonishing amount of shoddy work being published but the good stuff shines).

Today an International effort is being made by the sick who are well enough and by carers and even some researchers to get some answers. Protests are being organised from Australia and around the world demanding better funding. I’ll never forget reading that in the UK more money is spent researching hayfever than ME.

But groups are getting together and thanks to the massive number of comoribidies that we all seem to have; dysautonomic disorders, gut disorders, bizarre cancers, heart failure… and so on, the more research can be pooled to help us the better.

A number of different paths are being trodden in research and they are proving interesting and hopeful. Anti viral meds are still being tested but for a subset of ME patients in particular they are showing great promise. Sadly, gettingt the FDA to move quickly on this has been impossible. More people are dying while paper is being pushed around with unforgivable slowness.

Cardiomyopathy and cardiac insufficiency theories are looking good for another subset of patients who (if they can get tested) often show mitochondrial dysfunction. When the heart at mito level can’t contain oxygen properly this affects the whole body. It’s a form of heart failure that’s difficult to diagnose (unfortunately) but as heart failure is the leading cause of death in ME, it’s a side of the disease that needs urgent attention.

Research from many chronic diseases including Multiple sclerosis has overlapped with some ME and fibro research showing the ubiquitous Epstein Barr Virus may be the door opener for the diseases. Patients are tested positive for reactivation antibodies and so many of us have a history of more than one serious case of Glandular Fever that this virus is looking good for the root of a lot of our problems. It’s also implicated in Lupus.

Theres good research into methylation and some into endrochronological aspects of our disease.

A lot of time and money has been lost (stolen even) but we can work together  and make up for all of that.  It is my personal opinion that the reason diseases such as HIV/Aids have received the funding and research needed was that those who became HIV+ in the ’80s were actually well enough to fight the astonishingly bad reaction from the CDC. It also helped – sadly- that some famous people died of AIDS.

People with ME and other similar diseases are very sick right from the start. Even those on the less severe end of the scale suffer serious brain fog, confusion and of course the hideous PEM (post exceptional malaise). The people who die of ME tend to be “ordinary” and therefore not high profile enough to galvanise those in power.

Perhaps there won’t be answers in my life time. But I pray to God, they will be answers. Join me in that prayer.

 

Home education Friday Freebies.

frugal friday freebiesJust in case any of you are planning ahead; and I am sure a few of you are; I have a new academic year calender which Kalei has put up on her amazing site for you. It covers August 2013 to July 2014.

You might like my Little Lessons on Science

I know I haven’t produced much in the way of freebies recently. I do hope I can get back to doing so at some point.

Free ebooks online for the children

Gutenberg’s Children’s Lit

Baldwin Classics You can also buy a humungous set of the books in either mobi (for Kindle) or epud for less than $50.

Heritage History

Somewhat out of season but my children love The Cinnamon Bear and this site has lots of stuff about him and the mp3 story to download.

Wired For Books Kid’s Corner If you like Beatrix Potter. There’s other stuff too,

Vintage Cookbooks

COMICS

CINDI science comics. I haven’t really checked this out yet so can’t say what it’s like. But have a look and see what you think

Treasure Chest of Fun and Fact Lots of comics on all sorts of subjects.

The Ascension of Our Lord and a side note about St. Dismas

It’s the Solemnity of the Ascension of Our Lord today although locally here it won’t be celebrated until Sunday. In this piece in which Pope Francis speaks about the Ascension he notes how joyful the apostles were when Jesus ascended into heaven. He points out that the  disciples knew Jesus hadn’t been taken away from them, but that He remained with them forever.  He had promised “I am with you, even to the end of the age.” And they knew He always spoke the truth.

I was going to try and write something meaningful about the Ascension but my brain is on a go slow.

So can I, instead, mention poor old St. Dismas. (Yes, I do have a soft spot for him).

It seems to be a popular question these days to ask if St. Dismas, the good thief, crucified with Jesus, did anything to be saved and whether he passed through purgatory.

If people think that Purgatory is a “place” you go to after death and Jesus said “This day you will be with me in Paradise” I do understand there might be some confusion. But if, as I suspect, many questioners are saying Dismas didn’t suffer purgatory (and in a weird extension that I don’t understand they then say therefore there is no purgatory) then it makes me think of “invisible illnesses”.

First; Purgatory is a process in which a soul is cleansed of attachment to sin and makes the required reparation for those sins as nothing unclean can live with God.  St. Paul describes it as being saved “as if through fire” where only the “gold and silver” are left.  It was certainly part of popular thought that Purgatory was a place with a time linked to earth where people would be purged over days, years or even centuries but this has been clarified by the Church and we are reminded that Purgatory is a process first and  foremost. We can do a whole lot of it this side of death; so as Blessed Pope John Paul II said “Don’t waste your suffering!”

St Dismas was crucified for his sins. He accepted this astonishingly cruel way to die and even had the courage to speak up first for Jesus and then to beg for His mercy, “Remember me when you come into your kingdom.”

To suggest that Dismas didn’t do anything and that he got off lightly is a bit like saying to a person with severe chronic illness “But you don’t look ill.” Perhaps St. Dismas could be made patron saint of “invisible illnesses”.

I am sure this questioning of what St Dismas went through is a very modern thing. Our culture of individualism has slid into blind selfishness and reached the point where even those who are supposed to be Christian can fail to see the suffering of another to such an extent they actually deny it. They deny his courage as well.

It seems to me a short (and dangerous to the soul) step between shrugging off what St. Dismas did in his last hours to shrugging off what his cross mate Jesus did for all of us.

3 Quick Takes

1

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Received a beautiful bouquet of pink roses today from a rather fine gentleman I married 25 years ago today.

We’re celebrating our Silver Wedding Anniversary with a take away tonight and a night away at the weekend. Lovely.

2

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First day we could actually do the learning outside in company with the guinea pigs on the lawn. Cups of tea and  learning trays at the ready.

3

Just back from the hospital where the Prof has raised the Ivabradine to 7.5mg bd. He is pleased my heart rate is coming down a bit. Hasn’t been over 130 since I’ve been on it.  He wants the Candasarten increased again to prevent another mini-stroke and/or a full stroke Still running high BP and fluctuating a lot. He wants the GP to sort that out once I’ve finished this lot of Prednisolone and possibly once I’m off the Furosemide again.

He also thought going after a dx of Lupus was a good idea as it covers a lot; almost all in fact, of what’s happening with me.

He’ll see me again in 2 months. He is very good.

home education; quick phases of the moon lesson with oreos and other buscuits.

As a bit of a treat from having just completed some Greek grammar we decided to make

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the phases of the moon with Oreos.

The earth was made from an upturned gluten free jammy wheel on which Ronan drew the continents and coloured in the sea. We have some great food colouring felt pens for just such an occasion.

The sun was made from a gluten free custard cream. Then the Oreos were taken apart and the cream cut to size and the phases marked and laid down in the right place in relation to the earth and sun.

Avila got to eat the world and the sun but I didn’t let Ronan and Heleyna eat 2/3rds of a packet of Oreos. I’m not that bad a mother…yet.

Next plan to make DNA sequence out of mini marshmallows and red liquorice straws.

P1020557Meanwhile I discovered that the water I was cooking purple sprouting broccoli in for dinner that night, went purple. So I saved some in test tubes to see if it makes good universal indicator.

Yes, I know, that’s so horribly home ed of me.

There’s some free science lessons here. I haven’t had a chance to look them over properly yet so can’t vouch for them but you could see what you think.

I do want to have a go at THIS LESSON where the children can build DNA with liquorice straws and marshmallows.

You might also like the free Kaplan Anatomy Colouring Book.

Against the “who sinned” approach to ME/cfs and fibromyalgia.(or any disease for that matter)

I heard a doctor of some description on the radio say that the reason so many people have diseases like Fibromyalgia and ME/cfs is because we are angry and unforgiving people. He didn’t back his extraordinary claim with any research, but he put it out there as if it went without saying. When asked if something like scholiosis could be caused in the same way, he didn’t think so; but didn’t explain why.

What I will call neofreudianism is causing a great deal of damage in the care of people with all kinds of chronic illness. it’s psychobabble with no empirical scientific value at all; but much loved in political circles. It is simply unethical and has caused terrible damage to the proper funding of research and the proper care of patients with these diseases. Patients are being denied tests and treatment as well as facing shockingly poor behaviour from medics and it all seems to be hooked on the politically motivated approach to trying to undermine the seriousness and reality of the diseases. It’s only relatively recently that the CDC have admitted that ME is a serious life threatening, life shortening disease.

There is, thank God, a growing body of research that shows the biological roots of FMS and ME and some excellent work on comorbidities. We are seeing FMS more tightly linked with autonomic dysfunction and adrenal dysfunction. Most of us have at least one dysautonomic dx such as some form of POTS and/or IST with other orthostatic disorders.

ME patients are shown to have all sorts of nasty viruses as well as MAST Cell, EDS and Mitochondrial disorders.

There is a growing number of us being dx with Lupus, Lymes and other serious disorders to go along with the already hideous  problems we face.

Despite all this, most of the people I know with FMS/ME/POTS/etc etc. are happy, well balanced and forgiving people. The fact is many many of us have faced the need to forgive (mainly neurologists) since becoming ill. The anger, resentment and sadness I’ve seen expressed as come as a RESULT of being so ill and the horrible behaviour of others towards us just because we’re ill. I don’t know anyone who became ill because they were angry with someone.

I do know someone who carries a lot of anger and isolation who has scholiosis. I don’t for a minute assume her illness was caused by her anger. There is no evidence to support such an idea.

It is bad enough being chronically ill, coupled with a shocking lack of well funded honest research, without having someone who patently knows nothing about the illnesses spouting misinformation on the radio.

How could FMS or ME be a result of anger and unforgiveness when it occurs in clusters. More nurses get it on average – are we a more angry bunch? It’s ridiculous to try and tar us with this brush. 

I have emailed Catholic Answers and asked for a retraction on air. I hope they do this. I do love Catholic Answers; it’s a well put together and usually very honest and accurate program. This is a one off hopefully and one that I pray wont be repeated.

It is not because we are a bunch of angry unforgiving grudge bearers that we are so ill. We just have a disease, like other sick people. We should be treated with the same respect.

My daughter’s first Kindle book. You know you want to buy it.

My oldest daughter has been slaving away in the attic writing, when she isn’t slaving away in the kitchen making cakes. And now she has launched her first book on Kindle.

It’s called Beady Cloud and your life will be miserable if you don’t buy it ;P

It’s available on Amazon.com and Amazon.ca

 

It’s not available in hard copy but you can download kindle reader to your PC for free and read it there.

Enjoy.