Dances with DS

It’s nearly time for our trip to South Africa and as usual I have left things to the ninth hour!  It just seems the list is endless sometimes.  There are gifts to be bought for family, things to be fetched and ferried over, clothes to be washed and ironed, the house to be left in good order, the basic foodstuffs to be put in the fridge for the children, the dogfood to be organised, lists to be left for the ladies that clean my house once a week…it’s a mad world when I start to travel!

Our relatives have just left. It was lovely to have them but yesterday I was so knackered I went to bed at the most unusual time of 9pm and slept like a baby.

And just when my bowel was behaving swimmingly of course it decided to play up.  I had a lot of pain yesterday and thought I might be coming unstuck again on the bowel obstruction front.  I can’t tell you what anxiety I go through at such times.  I have to work hard to get past the fear and not get on the phone to bother Mr Patel - lol!

I sat it out and decided it was probably a reaction to the stress of everything right now and possibly a very minor overgrowth. Usually if I have wind I bloat and this is the way I know without doubt that it is wind pain. But this time I did not bloat.  I still think though that it was trapped wind that was stuck in my upper bowel putting pressure on my stomach and making it ache like mad.

Having guests almost always  gives me bowel grief,  I think it is related to tension on the toilet at these times. I hate the idea of anyone either hearing me or smelling the end products of a loo visit so I try to get up early to ablut in blissful privacy!  No luck this time as the youngsters were up crack of dawn.  I also hold in my need to release wind as a social courtesy - it doesn’t do me any good at all. I took one augmentin and today I feel heaps better.  I won’t persue a whole course of antibiotics but I will start acidophilus today to prep my gut for the journey home.

I have gained a little more weight and feel quite okay about it as I am still well within the  parameters of normal BMI. More importantly my clothes still fit me comfortably.  It’s rather nice to not be sitting on such a terribly boney butt.  But I draw the line here and know that it’s time to cut the sugars down again. They snuck into my life so very easily.    The house I am staying at in SA has a pool so I will get a lot of exercise too.  I can’t wait for the sun on my back either. I need that D really badly!

Talking of Vit D, I saw my GP and tried my level best to get her to prescribe ADEK for me. She was not happy about me getting 2 a day which is what I feel I will need to balance out my new vit plan.  She did prescribe one a day though. Hmmmmmmm.

I had no luck at all persuading her to prescribe me mega high doses of Vit D though.  It’s like GPs cannot understand the depth and breadth of our malabsorption.  I find it so tiring to try to explain again and again. I know she is just being cautious but there are times caution is a darned bad thing!  Anyway - hopefully when I get back I can resolve these issues and move to my more customised Vit plan.  My dexa is scheduled but I don’t have dates yet either.  Ah, the joys!

All in all the problem is I present myself to the GP and know I look thoroughly healthy!  Maybe if I crawled in there looking a right wreck it would help my case - lol.  Actually despite the probable Vit D deficiency I do feel pretty good right now on my hocked together temporary standby plan.

I am loving having my Matt back from Uni. At night we make hot choc drinks and talk about many things.  He is coping well with Uni.  He has made many friends and enjoys his course.  Kate, my daughter is going off in July to a camp in the USA to teach kids fine art.  She’s bricking it but it will be good for her. Sometimes I think my children are too sheltered perhaps because I have tried so hard not to let them experience the hardships of my own adolescence. I suppose I have an aversion to emotional pain when really perhaps it is also a part of life and can result in many positive strengthening attributes.  She’ll be gone for 3 months. With her gone and Matt back at Uni I will be struggling with terrible empty nest syndromes no doubt. Still I know I cannot have them close forever.

Well that’s todays little verbal offering!  I probably won’t write again for quite a while as computer access in South Africa is not easy.  I shall miss reading how everyone is doing on WLSinfo and hope that everyone keeps safe and well while I am gone.  No sudden frights please folks!

I’m off to do a hairy bout of ironing now. I won’t complain. I’ll just do it. Just now. After tea. After I have had a bath.  After I have made breakfast …. ;-) 

Today I was up crack of dawn courtesy of my DS. It’s back to being like clockwork if a little earlier than usual. Everything is working well and I feel pretty well on my current changes in the vitaminology field.

I have lowered my V4L to 8 a day. I have upped my calcium & Vit D & mag significantly. I plan to juggle this formula even more when I get the ADEK on prescription. I had some rebellious action when I began the CalmagD - vile constipation that made me miss my usual steato-stool. It might have just been a coincidence too. Sad when you miss a whippy poo eh! I was upping the water - eating figs and generally rather unhappy sitting on my little throne. But I know with the DS it is often a case of persisting and then suddenly it gets the message. Seems it has. Life is smooth right now in the bowel action department.

I know people will ask me where I buy my calcium citrate from. Look to the right of this screen and you will see a links box. Click the one that says calcium vits etc and away you are. It is run by a friend of mine who is also a DS patient and she knows the ropes both out of experience and because she is a born researcher. I don’t have a vested interest in these products because I have always steered well clear of getting involved in the financial side of the supplements I take, from the getgo of my supplemental life.;-) Just thought I should mention that. Anyway her line of products is great, well thought out and I think very good value. I could get some dubious calcium via the NHS but frankly I would rather pay and know I am taking the correct stuff. This is a supplement in correct ratio’s. It turned my friends bone health around and I feel it will certainly help me too. It might need tweaking (what does’nt!) but as the hub of the bone wheel I don’t think we can go too far wrong with it. While you are browsing the site take a look at the coconut oil as this is a valuable oil for all malabsorbers, particularly if you are overshooting your lower end BMI or have a bowel that is grumpy. The protein bars are not mega high in protein but they are really good and tasty and I could easily eat 2 in a sitting for 14 grams worth. They are a nice light texture too none of that doughy junk saturated with chemical aftertaste. Much better than retching on a 25gm bar that tastes foul. The calmagD is one of the daily supplements I use. I dissolve it in a little peach cordial and slug it back. It’s not bad and I know this is a very good med for me right now.
Not much has been written about the role of magnesium when it comes to bone health but it is a factor. It ratio’s with calcium too. I had not expected constipation initially as magnesium can cause diahorrea (and don’t take it without checking with your GP as usual). But as I said this could just be my body reacting or a co incidence. I should follow my own good advice - start off with a supplement in smaller doses and increase slow & easy so the body adjusts.
Anyway - things have levelled out and I feel happy with my new plan, even though I have not fully implemented it yet. I reread Scopinaro’s advice on the Vit D. I think if I could go back in time the only thing I would do differently would be to seperate out the calcium from the rest of the meds….and I would take really high oral dosages of Vit D starting in year two. I think I need to really try to fully get my head around this as my hunch is we are all too low on D & calcium. Yup even at 2500mgs a day. But just a hunch and not yet substantiated enough by solid research.
Pete and I had a fantastic day together. We went to a carboot - good grief it’s amazing what a fiver can buy at these. I was in shoppers paradise. For tenner I picked up a lovely old victorian urn adorned with cupids and putti. Very ornate and rather wonderful. The seller threw in a Florentine mirror with an elaborate wrought iron surround - the value of it is much closer to £40 than a fiver.

Pete bought me a huge bunch of roses and chrysanths and I blew more of the old dosh on a 1920’s chinese wrought iron plaque, a velvet turban and flowy pair of black pants, a lovely cut glass decanter (for she who seldom drinks, but it can hold my Turkish cologne). I chatted with the friendly store holders and might give it a try myself sometime when I get back from SA. Something has to be done with the mound of clothing I still have over from my big days.

I think scouring and snuffling about for antiques and collectables is up my street. I love that world with it’s savvy dealers and it’s enthuisiasts. I love the bustle of the market and the little chats over laden tables. I can understand why my dad was an antique dealer.
After that we drove through the hills where I fantasize that I will live one day. I saw my favourite tree in the whole world and blew it a kiss as we swept around the wonky little road flanked by farmlands and woods. Soon the woods there will be carpeted with bluebells and a sense of magick.

We ended up at my fav DS eating ground - the Inn on the Hill for a lazy sunday roast. The best roast on this island imo. I had stuffed loin of pork smothered in applesauce, roast lamb smoky with garlic, and the best rare beef. A little cauliflour cheese and I managed 4 halves of roast potato. It’s a huge plateful and I am always suprised I can eat it all. Mind you I am still stuffed hours later! Dinner has been a fortified milk drink.

We drove home replete and happy and fell asleep in blissed out comfort.

Now I am painting my floor mat in the merry evening hour and telling myself to be patient. Good things sometimes take time to accomplish.

About a year ago while musing over my deep pock marks on my face I researched possible treatments. I came up with an interesting procedure called ‘needling’. A few surgeons had been doing it with what seemed good success. But it seemed painful. Basically it is a colourless tattoo - the idea being that when the skin is punched with needles it reforms collegen beneath the surface smoothing pores, icepick acne scars and even lip wrinkles. I read a few personal success stories and some where the worst case scenario was no change at all, but no damage. It can be done by a surgeon (bust your gut paying) or by a make up artist specialising in make up tattoing or just a tatooist. Some brave souls had been self needling with good results - I tried once with a diabetic needle but I nearly fainted on the first punch and decided I was not among the brave!
The problem with my pocks is that if i try to wear a foundation it pools in them looking hideous.

Anyway to cut a long story short a new tattoo parlour opened locally. I decided to go and broach the subject. Would he consider an experiment? He would although he warned me the procedure would be very painful. *GULP* I am not a fan of pain.

We made an appointment and bricking it all the way I showed up for the deed last monday. We discussed the finer details and I lay on the couch. ‘Do you want to hold onto my arm as I start - this is painful?’ - said Jason the tattooist. Omg. If I was bricking it before I was going into a type of paralytic fear then. I clenched my fists and he started - 14 small needles punching my skin - both cheeks. I kept thinking that next to the pain of my bowel obstruction this was a walk in the park. I think Jason was a bit suprised that I did not swear even a little. 30 mins later we are done. I look in the mirror. My cheeks are a bloody seeping pulp. Not pretty. It looks like a severe burn. Both sides. I walk home oozing and seeping from the pores praying there won’t be any small kids on the way that will be physchollogically damaged by the woman bleeding from her cheeks. There are not but unfortunately the day is sunny and plenty of people are out & about. I get the old looks that reminded me of how long it has been since I was obese. A quick intense up and down look which terminates in people looking past one. Very strange. I hurry on home.

At home I coddle the wounds. I wash with antiseptic wash and liberally apply bio oil. It stings like hell but not for too long. I thank god Pete is in Jordan, it does look alarming. Next day it looks no better and I am feeling anxious. Maybe I have not got enough vitamins and protein in my system and my healing will be delayed and I am open to infection on account of my malabsorption. I eat immediately 3 eggs and 3 pieces of bacon and take my pills in even more spread out amounts through the day to maximise absorption.

The 2nd day things look much better - there was a lot of peeling skin but it came off with the application of retin A and oil. No ugly scabbing at all. Retin A is an important part of this - and I am applying it 3 times a day between fastidious cleaning of the area.

Right now things are greatly improved on the healing front. I have been hiding from Joe public but I feel I can now go out, there is only a tiny bit of discolouration left. I am relieved because the malabsorption syndrome I have had worried me. Seems that all is well on the whole because my healing process has been no different from a non DS person.

Has it worked?

It’s a bit early to tell. The pocks - or icepick scars are much softer to the touch - but they are still very visible. I am giving it time as it can take months for the true results to happen. Most people do need several treatments to get the best results - I expected that and probably will need more. I would say I am seeing a 30% improvement currently in that the craters surrounding the indents are very much flatter. Fingers crossed. I will update as time goes on.

Pete is back. It has been a long week without him. My son Matt was beaten up by two thugs in Brighton. He was walking home one night and said he was passing by a church. He felt a smashing fist in his face and 2 men pulled him over the church wall and proceeded to light into him - kicking and hitting him. A girl ran up and asked if he was okay and apologised - ‘they are drug addicts she told him and then she went off after them. They’d not tried to steal anything - it was just a random act of violence. Luckily Matt is okay. Bruised but okay. In my mind I flashback to sitting in a Jo’burg hospital. I am holding a young boy of 17 in my arms. His head is entirely bandaged. His eyes are closed - he has long soft eyelashes. He is very pale and fragile looking. A beautiful boy. My heart is in tears. Even though I don’t know him, my heart is crying so much. But I can’t show it I am there to support his sister through this. It’s not my place to cry. He is on life support machines. His sister is near us in tears. The doctors come in. They ask her permission to remove his life support. He is clinically dead. He had been beaten up by two thugs.

It only takes one blow in the wrong place. Just one slightly off kick. Humans are fragile beings. I am still chilled by my son’s unwarrented beating. And I can’t forget the child who died either. It’s like a post traumatic type of flashback that has been replaying for me all week.

I question everything I came here for. I left my country because of the violence and the daily fear of my childrens safety. Now I don’t know anymore. I don’t feel safe about my kids safety.

I am preparing for my children who are coming home soon. Matt will be here. It’ll be a relief to have him home this time. My young niece Sarah is coming over from Italy with a friend for a few days too. I have requests. Fried breakfasts - no olive oil and peanut butter. Salmon and veggies.

In between this CT is coming up fast. I need to organise and pack the old suitcases.

I am also working on my floor mats. I am not a carpet fan and these are based on the old fashioned pre-lino days. People took canvass and painted it and varnished it until it could be mopped over to clean it. I’m getting there. Of course I can’t do anything by half measures and so I cut a hugely elaborate stencil and I have been intermittently painting for days on the small guestroom mat. But it is looking good even if I pat my own back!

Well, off to get on with the day now - there is much to be done.

Time seems to just barrel past me these days. I swim and there are days I sink into the mire of household drudgery ( can you tell I am not a domestic goddess!?), mega plans for various ongoing projects and holding my DS together ontop of the whole lot.

I had a sudden day of the squits - not sure why. Sometimes it happens and I go into fast action mode to nip the bud. Yogurt, acidophilus, pur protein plus a hefty dose of calcium seems to have bound things up again. God, I don’t know how people can live with it really - it’s a tough call for some DSers. I understand each time I get one of these days just how debiliting it would be if I could not control it. And make no error some peeps try so hard but the well formed stool remains evasive for them.

I’m still rather interested in the use of carefully controlled anti depression meds for DSers struggling with this - but it would be highly experimental. For now we have possibilities - cholemystramine and other such drugs…with the downside here being that they might bind with ADEK vits causing deficiencies … so a bit of a double edged sword but probably not unbalancable. Then there is long term therapeutic low dose flagyl…some DSers in the USA have been doing this for ages with apparently no side effects. Or high dose augmentin, flagyl. Then acidophilus. That’s about it currently so I would love further investigation into anti depressant therapy. It sounds strange - like it is for the head but really this would be very related to the biology. Just consider how much seratonin is produced in the abdomen. Then consider also that we need Vit D to synthesize seratonin production. Then think on how many of us have Vit D related deficiencies. It has to at least warrent a small trial? Perhaps it will turn out to be a load of nonsense but if I had the squits like I have just had - every day - I would be trying anything.

Off the lil soapbox now!

I am crapping in a beautiful environment. At long last the guest loo is completed. I have filled holes, sanded and plastered it seems for weeks - and in such a small space. I think small spaces are the hardest to decorate because everything is in yer face…the wee faults are highly noticeable. I have put in the final touches. Crystal candle holders to shit by candle light. Some nice bits of victorian advertising on the walls to look at. And a very funny cartoon of snowmen making ‘Mr Whippies’ that Hels sent me. Others in the house find it mildly funny but it’s a true Dser joke this one. It’s hysterically funny to me! My collection of highly irrelevant cut glass perfume bottles and a tin enamelled artwork that has ‘boudoir ‘ written on it. It is sad that my boudoir is a miniscule toilet but I needed somewhere attractive to dump my goods.

Well that’s it for today. Off to an antique fair and then London for canvas & black Japan laquer at Cornellisens, my completely favourite artists supplies shop. It’s the best - reminds me of an old fashioned apocathery - except it’s loads of jars of rainbow pigments that line the shelf. Magic. There are crystals of gum arabic, shellacs in the old school manner, loads of interesting bits and bobs related to painting and printmaking. In short it’s eyeball heaven.