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.

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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..