Dances with DS

I posted most of this up at WLSinfo  this evening & thought I would copy it here.

I went for my regular check up today and got my vitamin lab results & they are a piece of perfection all in all. I’m so happy about this.

I have seen a few spot on labs in my DS life before, but usually it’s my zinc or iron that is low. In fact I was getting a bit tired of almost expecting to see this on my labs over recent years. Because I was getting slightly resigned to it all I felt I needed to stop plugging myself into the negative energy of resignation.

So, last year I set myself a challenge. I wanted to prove to myself that I really could be master of my vitamin destiny and show the low zinc who was boss.

I also wanted to prove to myself that it is possible for a longerterm DSer to do very well in this regard and that deficiencies and malabsorption don’t need to be inevitable side effects of this surgery.

There are times that Dsers might be conscientious about their supps and still have difficulties with deficiencies.

Most of the time however, we are in the drivers seat with the DS. A solid ‘base’ of good quality vitamins everyday as top priority will almost always correct any problems.

So take them - every day!!!! Even if you can’t take the lot and are having problems - take something, anything to start with - it will go some way to getting you in good health. No good quality vitamin is ever wasted on a DSer!

Very interesting to me is my cholesterol levels look good. I asked whether we could test these specifically last time as I always wondered if being a such a lipophile ,with fats being the major source of cals in my diet, would have an impact on me longerterm. I’d read before DSers don’t generally seem to be affected on this score in terms of getting bad cholesterol levels, but I wanted to know this in my own context. I’ve eaten high fats since my DS with an increase in my 2-3rd year & it looks fine.

We discussed some probs I am having with what I thought was the pile from hell, it seems it might well be a polyp so I will get that dealt with soon. Made me realise it’s never clever to not get these things checked out professionally. What we think something is - may turn out not to be the case at all. I’m not too thrilled about it to say the least, but if it is a polyp it’s very likely completely unrelated to my DS. I had three on my tum pre-op and those were removed which is why I had a very small DS tum to start with. Sooo, I seem to just have a disposition for these unfortunately.

Anyway - I have decided to just enjoy the weekend and bask in the good news on my lab front and feel positive about this. I’m using it to reassure myself that if I need a surgery to remove the polyp, at least I know my labs are in fine fettle. I will deal with the polyp from hell in the near future.

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A further thought I am having is that I am very very lucky  to receive such excellent care from Mr Patel & his fantastic team. I’m so grateful to them for always being there for me. Everytime I go to see them I think back on the days I pretty much slogged it out alone with  mostly,  pretty disinterested GP’s  when I had challenges.  My surgeon in Germany to his credit, was always there for me and responded to my e-mails every time. He also used to regularly contact me to remind me to send him any lab results I had managed to procure, but distance can be a real hassle when one is trying to put over the finer details. Nothing beats a face to face consultation.

It was tough and sometimes I felt soooo despondant.  It got to the point that I realised I needed to get savvy about my own meds etc.   I can see in the bigger pic that it must have been part of my bigger universal plan to slog it out , because it forced me to start to try to understand the DS and it’s challenges better.    Survival is a big motivator on the road to self empowerment sometimes - so it was not all bad stuff.

But and it is a BIG BUT…nothing beats a team committed to WLS. I suppose one has to sometimes experience both ends of a stick to know what is good and what is abysmal.

My advice is if you are going to get a WLS check out the aftercare offered.  If you had surgery abroad do try to find a good team to help you through the more trying times. It makes a big difference to one’s feelings of being able to live with the changes & challenges of one’s surgery.

Here’s an interesting snippet:

 http://www.eurekalert.org/pub_releases/2008-08/mu-kc082108.php

 Although not today’s news, it made me think.  I’m doing a fair whack of thinking of late.   Food has incredible power over our biological chemistry.  I know booger all about chemistry, except what little tiddly bit’s  I experience playing with formula’s for hair/skin products etc - but chemistry must mean interaction…interactions that create other chemistries.

What I am trying to express is that  food is so much MORE than the trite we have been fed about ‘fat being bad for you’, ‘meat - bad for you’, ‘eggs bad for you’, ’sugar, bad for you’, ‘carbs, bad for you’ - almost everything is bad for us. It’s about what the interactions/chemistry that food create in the body. Something we still don’t seem to understand enough of, and how I wish we would, as this sort of knowledge would end obesity for once and for all.

Yes, we all know we have eaten or do eat wrongly. Problem is we don’t know what is right any more. There was a big blow up in the face of conventional wisdom regarding the food pyramids flaws a couple of years ago. But have we as a society noted this?

Have we learned anything? Are we helping our children find their way back to biologically correct eating practices? Do we trust the revised version of the old pyramid?

I don’t think so. For all the hype about correct diets etc, obesity rates are soaring like never before.

I grew up in this generation of ‘bad for you’ and I’m still trying to sort the wheat from the chaff.  Randomly -I’d fly in the face of convention and say it’s just a darned shame that I never learned young to replace my sugar and simple carbs with fats instead. (One I will explain better at a later date.)

Having a DS has turned my thinking upside down regarding nutrition…but my conditioning is deep and recently as I have wobbled through several resurfacing issues regarding food, I have had to realign my thoughts on the issue.

Although I am decidely a liphophile, with my calories coming in high on fats, one thing I have had to do is sort my head about getting my sugar down again. I’m doing it but I don’t like doing it. Reading the above made me stop & think that really I can like sugar all I want but is the potential damage worth it?  I’m thinking at least it’s palm, it is low GI (Glycemic Index). Perhaps GI is connected to degradation of vital neurons in the brain, not sugar per se? Or perhaps I just clutch at straws. I need to research this possibility more.

Thing is - I clearly have some kind of attachment to the stuff as for a while I went into various states of unnecessary emotion. It’s not like I am giving up anything here - I just need to lower it into a workable balance.   So right now I am sticking with half my usual intake which isnot quite as big a wrench as I thought it would be. Now I just need to monitor my weight to check it doesn’t start shifting downwards again.

The real nub is this - quite aside from weight gains & losses - I don’t want to set myself up for sabotaging my DS in another 5 years. If neurons are involved, much as I always suspected - I’ve got to keep the functioning of them intact.   I don’t want to undo the marvellous & miraculous gift the surgery gave me of knowing the difference between hunger & satiation. I don’t care what anyone says - there is miracle & marvel in this for me. Feeling satiated after eating is a wonderful thing. Not overful, not hungry - just content.

I don’t need to revisit those days when it never existed .So I need to get to grips with current research.  I don’t know if anyone has published anything like the above article lately , or if the theory has digressed or progressed.  I need to finally pull the floating pieces in my mind together about what foundations I am laying down now…for later. Again. Strikes me it’s a process I will probably repeat in my life on & off forever.

As for fats - I’m recently questioning if there are actually ‘good vs bad‘ fats. Are saturated fats really bad for us?  I won’t bother looking at things like hydrogenated/trans fats -  enough research has been down to prove they should be avoided. However have saturated fats just been  lumped in with the transfat’s in the past?  For an age I have accepted that there are the goodies and the baddies and I have always tried to eat more of the goodies.  Infact I much prefer the good fats. I love nuts, avo’s and veggie oils of all types.  I tend to leave meat fats at the side of my plate, I’m not a fan of fatty bacon although I do love crackling every now and again - mmmm think it is about time I make some 5 spice crackling again!  I do eat lot’s of cheese based fats, some cream on the odd occassion & butter everyday.

I’ve been off eggs for a couple of weeks of late, but I can feel myself wanting them again.   Mostly because yesterday I had my once or twice a year drive to eat weetabix with hot milk - and I knew ‘d pay for it - I knew it, but alas I suffer food related amnesia. I had forgotten just how much I would pay for it. A night spent up & running to the loo - a nine month plus preggers bloat through the night. Again, as I always do sitting at 4am alone in the wee hours on my toilet I asked myself if it was worth it?  15 minutes of wheat laden chewing (and why doesn’t it ever taste as nice as I imagine it will?)   for this?  I had to say no it was not. But mark you my words,  in another ten months or so I will forget the pain and repeat my experience of bad deja vu allover again!

Other than much thinking - I have been slowly replacing all bought toiletries in the household with my own creations.  I don’t think when I began I could have imagined just how time consuming it is. I thought I would do it all in a month. Instead it’s taken an age to learn the finer art of formulating and I am still so far away from being nearly as good as I wish I could be. *Sigh*  But between the many disasters of seperating creams and over oily body washes, I’m making progress at last. Just tonight Pete came down & said he had used the co-wash on his hair, shaved with his homemade shaving bar, had a little body scrub with the bath scrubbies I made  & applied his ’safe deo’ which I made last week … I had to smile. He’s all Janed up, bless him!

It is being a better week than last week - or maybe I am just feeling a little better!

My daughter did contact me and was safe & sound.  A few days after she called the world rocked again in Santiago - this time the quake was 7.2. She was in a seaside town and everyone had to evacuate in case of a Tsunami.  She says they fled to the hills but that it was dangerous as people panicked and did silly things like driving on the wrong side of the road around blind corners.  Mercifully there seems to be no damage on account of this latest quake.

We will be travelling in April - still no dates but I have decided not to be silly and pernickity about that.  I’ll get packed and sorted next week and then if we must leave at the drop of a hat I’ll be fine!  I don’t know why something so simple escaped me - there I was panicking about getting last minute flight plans together. Mind you I should fess up that being organised is a sore point with me as I just can’t ever seem to be an organised type of person. I want to be. I am in certain area’s that are 100% important like my vitamins & labs. But regarding general life - I hang my head in shame. I am very lucky to be able to travel like I do & to get all hung up over small technicalities is really a tad petulant. So bring on the adventure - I am ready to flow with things and not let my stoopid mind block out the adventure.

I’m visiting Dad next week - I will see if he is okay with my own two eyes.

Dietarily - I am on top of my runaway palm sugar intake & have cut back to half the consumption. So even two days on fitday gave me the impetus to change my slidingly bad habit.  I’m accepting that it is fine for me not to be perfect. I forget this quite often as I have a kind of perfectionistic under drive.  In my overall DS picture I think I am doing pretty darned well. Yes there is always room to improve but I don’t need to become a panicked wreck about it.

And wonder of all wonders I have finally cracked the perfect Shampoo - except it is not a shampoo - it is a Co-wash.  I just rub it into wet hair - rinse it and it is doing what a seperate shampoo, conditioner & hair shining/taming spray would do all in one go!  Many many months of struggling through unknown chemistry is over!  The flops and disasters are OVER!   YAY!

When my  friends and family heard and saw what I was doing they offered  to be guinea pigs for my great hair experiment. I love seeing their faces when they emerge from the bathroom with hair full of body, tensile strength, shining and sleek - first go!  I love hearing them go through the multi products they could throw away - up to 4 seperate products in one case!  (Just think how many risky chemicals are going into the bin!)  The results are truly instant…which sounds like a crappy commercial I know.

I could kick myself as I have forgotten to take before & after photo’s which is just so stoopid on my part.  But so far it seems to work on everyone pretty much equally effectively (could be tweaked for very very damaged hair) but it might just be a fluke.  If I loved Babassu oil before - I now ADORE the stuff! Although my co-wash is stuffed full of beautiful oils and herb extracts I still think Babassu is the leading light!

Overall it’s coming in really low on safety scores too, if Skin deep Database is anything to go by. (And I am not sure tbh that there are not vested interests in the core of that business, but I won’t elaborate right now).

The only problem is that once it is tried - my friends want more. I am so flattered, fickle ego that I am! lol  I would think they were just being the sweet mates that they are and trying to encourage me, but the results speaks for itself really.  I do have a sense of pride in this product. It is beautiful to behold I tell you!  Creamy, unctious & thick with a sheen to it. I already  know it is addictive to wash one’s hair like this - I can’t go back to other products myself.  The rub is I feel quite bad as I can’t supply them. It is illegal to do so. I feel so shite - it is like giving a kid a nice tasting lolly pop and then taking it away. 

Pete says we should just get it passed formally by the powers that be and sell it. But I am not sure I want to head a co-wash business, this was really just to get ontop of my problems  of being malabsorbant and of dealing with sensitivities caused by  commercial products. A very personal adventure in many ways.

What I have enjoyed about it all has been the mental challenge of stretching my mind into an unknown creative, but also chemical direction.  I know that regarding most toiletries I just seem to need a whole lot more than what is out there minus the bad crappy chemicals.

I just have to temper my excitement that I have cracked it.  Gawd forbid in 6 weeks time my hair starts to fall out!!! 

It is early days. If I decide to take it further I’d need to test this over longerterm use on other people - it’s just getting over the ‘illegal’ mountain of governmental red tape and drive to suck my moola dry. To undergo formal assessment and challenge testing and register as a business etc -  COSTS big time. Oh - how quickly the goverment squashes any budding entrepenuers out there, soon our Britain will be a wasteland of opportunities missed. It just is more viable not to bother as the reward will only be mounting costs and stress and even more taxes and paperwork. Gone is the inspired, creative Britain I came to all those years ago.  Sad really.

For myself I have been prime guinea of my own production line for around 6 months now. Even though my hair has taken less than optimal products on it weekly - I have noticed I no longer need to dye it every 2-3 weeks.  I get 5 -6 weeks now.  I have skipped several haircuts as my ends are no longer splitting.

As a malabsorber I began by thinking that it might be possible to truly feed the skin and hair from the outside using principles of nutrition in many ways. It sounds crazy, but I have proved it can be done to a fair degree and that transformation of the hair is possible - quickly and very easily, using minimal man made chemicals and sensitisers.  It’s been a loooooong and constant struggle ploughing through so much research but  I think I can pretty safely say I have proved my own points, to myself.  And that’s what matters right?!

Now…. I wonder what my next challenge should be? ! 

http://www.telegraph.co.uk/health/healthnews/7379094/Vitamin-D-triggers-and-arms-the-immune-system.html

Thought I’d pop the above in here. (It will open in another window btw).  It kind of relates to the story I posted in this blog some time ago about the man who noticed his patients did not develop severe flu viruses when on high dose Vit D. Seems his observations were correct.

I give it to my family members at the first sign of flu. Might be a fluke but recently my uncle began to get flu.  Each year he gets it plus a dollop of severe bronchitis into the miserable deal. It leaves him in a bad way everytime.  I suggested he give temporary high dose Vit D a try - mind you not as high as we wlsers take - but high for a ‘normie-gut!’  Three days after the virus started he called me to say he was impressed as his flu had resolved and he could’nt believe it never went the bronchitis route.  Soooo…as I said could be fluke - but there seems to be growing evidence that it wasn’t.

I take high doses of the Vit - 6000iu per day plus 50 000iu once a week in winter (less in summer - no extra if I’m getting many days in a month of sunshine - rare but has happened!). I’m fine on such high doses - my D has always been in a good range but not over the top in my labs.  I am alive & kickin’!  My feeling is 5000iu’s will probably suit most WLS patients needs…but see how your bone health is and adjust to a higher level if required.  Don’t forget to take enough calcium as well. High levels of Vit D and lack of calcium are not smart!

If bone health is an issue look into Vit K2 - this supposedly helps to ensure that the calcium is deposited in the bone - where it should be. While you are at it research magnesium in relation to bone health.

Vit D like all our supps needs to be researched for drug interactions as there may be certain medications that increase or decrease the need for it.

It’s been a shite week. I took Zenni to the vet for his checkup and was told he has irreversable lung damage. It’s not instant death thank the gods, but our vet thinks it might explain the constant coughing.  We have not ruled out tracheal possibilities yet either, but this looks like it could be the problem.

It ties in with his coughing which became severe at the time our Petal died from lungworm. It has brought back my sadness & devastation at losing Petal to the ghastly hemorraging death she endured and anger too. Like a runaway video I still see us driving her to the vet in those last hours. The snow was deep on the road and my girl was in my arms convulsing with her eyes becoming congealed pools of blood. It was horrific & traumatic. I was not crying then because I was in shock - I remember I just kept telling her we loved her and to hang on because we would get through the deep snow to the vet. It felt such an age to get her there.  Anger because I was so flippantly treated by Zenni’s vet at the time when I was concerned he had the dreaded worm - after going through what we did with Petal did I not have the right to be concerned about Zen?   We are just lucky to have him still, but no thanks to her.

I can’t believe several years later I still hold such strong feelings about this. I have been tearful & angry & gone through the whole gamut again. Then I get frustrated with myself because I have this habit of thinking I have cleared out all my old emotional muck & moved on.  And then it resurfaces and I wonder if one ever really can get rid of ones old muck of emotions or if they hover deep in one’s heart just waiting for a trigger.  I miss Petal like crazy still. Even though I have my Zenni & my darling little Ruwbs, I still feel so cheated of my life with Petal…and that she never even made it to 1 years old.

He is on meds now for it that dilate his lungs.  I asked about side effects - his vet said they are not common but that he might become overactive. No kidding!  He is like a young frisky pup and we have had some pretty sleepless nights because Zenni just wants to play in the early hours.  lol.

I do laugh but at the same time I am watching this because should this flip into too much maniac activity that might not be a good thing. For now though I am suprised at him. He no longer growls at Ruwbs irritably. Instead he has even played with her a little.  Poor old boysie feeling so poorly must have made him feel ratty - unsuprisingly.  So far the coughing is better - but it’s early days.

I don’t know where my daughter is right now. She’s not been in contact and my mind starts to go into overdrive. There were aftershocks in Chile & suddenly I just wanted her back home. Booger everything else.  Most selfishly. But it scares me knowing my child is out there on a piece of unpredictable heaving earth.  No doubt she is fine but my anxiety gets out of hand.

Then I start to feel seriously bad because others are realling dealing with such big things in their lives and by comparison my lot is piddly squat. I do that ‘I should be grateful’ number…it never helps does it?!

Dad has not been well either…I think. I think, because he doesn’t tell me what’s up. I just get lot’s of e-mails from him which usually indicates things might not be good even if he says he is okay.  Maybe he is okay - maybe not.  I ever fear his cancer will revive itself.  I feel truly bad too because I have not visited him since we got back from SA  and tbh this is the only way I will truly know how he is.  So I am beating myself up with guilt about this too.

Pete had to go to Croatia for this week  & I realised I had no clean gear for him -  much washing & ironing later I got my act together. I am just the worst domestic goddess ever. I don’t even make goddess status. I need to improve.

I’ve been told we might travel in April - usually I would be excited but I am just miffed that clear dates are not being set. I get like this sometimes - I don’t want to just flow with the tide!  I want routine and DATES and not such vague maybe’s. I’m difficult to live with - and I am having the difficulty!  Frankly I would divorce myself right now if I could!  It’s so bizarre really -  I mean what choice do I have - c’mon. I have to live with me. lol

In a bid to placate myself and get my mind off me troubles,  I made a huge batch of body lotion with some really nice (and expensive oils!) and  the entire lot seperated into a strange gloppy curdled mess.  I had an over the top reaction to it and threw a nasty tantrum which even shocked me. Usually I would just chalk it up to a learning curve, but the way I performed over such trivia, was a bit shocking - even to me.

It made me realise though that I am oozing stress like a leaking kettle that can’t keep it’s own lid on.

Meantime fitday has died a limpid death on me.   I feel like I am doing everything so badly at the moment. I’m having a real confidence wobbly about everything and it’s mother right now.

Next week will be better right?  Please, please tell me it will be!

I’m rolling about in the land of deep relief and thankfulness right now.

I don’t write often about my children on this blog because I like to keep things a bit private but my daughter, my child who makes me laugh so much, who is my piece of sassiness when the world looks grey and who has been so often a light in my life - is okay.

She and her partner are travelling right now and they were on route to Santiago for her partners family reunion and a family wedding.  Mercifully they just missed the earthquake by a couple of days. But her partners parents and family were in Santiago and went through it all. Everyone is okay. We are just so grateful.

I got a late night call from her just to say they were okay on the weekend - I have never felt such relief. I was not sure of their exact whereabouts and I was worried.  Particularly as a few days before she called us and said they had just felt a tremor.

They are still planning to go to Santiago. Today.  It does make me anxious but I can understand that right now nothing in the world matters more than family. In her partners shoes I would do the same. I hope for the family that they will still go ahead with the wedding & that it will be a joyous celebration of togetherness.

Not sure how they are going to get into the city - the airport was only partly opened last I looked but they were looking at bussing people in from area’s outside Santiago.

I’m reminded how much we forget that actually we are not in control. In the blink of an earthquake or a storm (as in France at the moment) everything can change forever.

My thoughts are with everyone today who has had to live through  a natural disaster.