More Tales from Exstrophy

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I had a Canuck Parent, Johnny, who has a wee son with Exstrophy comment on a previous post and I thought I’d follow up on some of the trials & tribulations he & his son may be going through at the moment and what could be some of the challenges & joys later on in life as an Exstrophy Patient.

I am originally from Canada, and I was born in the 1970s with my magnificently deficient urinary tract, back in the days when parents were not given mental/psychological support and both parents & children were expected to just get on with things. Thankfully things are better.

So to the parent who commented, there are some resources, which I know that most pediatric units still do not share readily with parents. If you are in Southern Ontario/Toronto there is the Hospital for Sick Children – that’s where I had my first 3 surgeries. My first Urologist was a Dr Robert Jeffs – a pioneer in pediatric urological repair, who went on to found & run the Pediatric Urology Unit at John Hopkins and was the mentor for Dr Gearhart (who all the American parents rave about). Sick Kids has a Social Worker Team who provide support to the parents and kids, helping them navigate some of the more obscure government grants available, getting us in touch with suppliers and finding any psychological support required. So if you are in the Southern Ontario region, try giving Sick Kids a ring.

So what are some of the challenges with Exstrophy? I cannot really comment on the male experience, except for what I have heard during Patient Conferences. Females tend to have it a little easier, as our reproductive organs are not enmeshed with our urinary tract like they are for males (urethra is not only for urine, but also ejaculation, it’s all so interconnected for males). I’ve made young men who suffer intense pain when they get erect, or when they do get erect their penises curve in a less than normal fashion. There are surgeries which can repair this or at least make it more bearable. And from my understanding (though someone feel free to correct me on this) the penis tends to be a bit shorter than the norm.

For females, because of the initial surgery – Closure – sometimes there’s an incision that goes from the perineum all the way up to the abdomen, bisecting the clitoris and the labia. Because the goal of the initial surgery is to get everything back into the proper position there isn’t really much thought given that the young female patient may want to experience coitus later on in life. So we invariably require some surgery later on in life to help loosen the vaginal opening. And because the way our pelvic bones are positioned, we tend to suffer from vaginal and uterine prolapse, even though we haven’t had children. I’ve had surgery, 10yrs ago at Sunnybrook Health Sciences Centre, to not only get a mitrofanoff but also to hoist my uterus back up into position – so far so good, everything is staying place.

So the tribulations with Exstrophy, and any other birth defect, centres around body image mostly. Unlike other birth defects – whether it’s a hole in the heart, club foot, etc – because Exstrophy is primarily the urinary tract it’s still part of that social taboo of bodily fluids — that age old “why is your child not potty trained”? “why do you keep peein’g yourself?” “that’s disgusting, ewww” – I’ve heard it all and it does wear you down, especially when you’re a child. It’s one of the last taboos, but thankfully there have been strides in that area – because society in generally has become more tolerant and accepting of differences.

Whilst growing up I hated my body. I hated all the scars. I hated that I had to wear diapers. I hated that I had to know where all the toilets were within a km of wherever I was. I knew the location of every single publicly available toilet near every subway station from home to school, in case I had to nip off quickly to get to a toilet. I hated that my antibiotics constantly gave me the runs, and that they affected my moods – some would make me sleepy, others antsy, some made me hallucinate, and others just made me ache. Even when I lose a lot of weight, because of all the surgeries my abdominal muscles are shot – my abdomen will always stick out, even if I get down to 50kg. I didn’t have a boyfriend until I was about 24, which is a long time for any young person before they experience their first relationship. If anything, I learnt how to value my friendships precisely because I was so lonely.

Because of all my surgeries I am not suppose to have kids. Makes dating difficult, as trying to find someone who is okay with their potential life partner not being able to have kids is extremely difficult.

But today, I have a husband, who is incredibly supportive and loves the fact that there will not be any Tiny Beans. He, himself, is healthy with no birth defects and no true health issues.

So to the father who had commented, yes, there are difficult times and there will be some joyful times. Your son will find love and it will be with someone who is incredibly special, supportive and kind. It happens, it just takes a while.

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Taxing Employee Discounts (Canada)

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I live in the UK so this doesn’t affect me personally, but as I adore all things tax, this struck me as interesting.

Seems the CRA (Canada Revenue Agency) has issued a new interpretation of the Income Tax Act with regards to employees receiving sales discounts from employers (retail shops, restaurants, etc) and whether or not those discounts should be taxed as part of regular employment income. Up until this point those discounts were not collated, reported and the tax deducted at source. The ITA (Income Tax Act) is rather unwieldy and you need to be a super specialist to interpret it. MP Wayne Easter has stated in the HP post that the CRA should rethink this new interpretation. I’m sorry to disillusion Mr Easter or anyone else – but any challenges to CRA’s interpretation of the ITA has to go through the Tax Court and the Supreme Court of Canada also hears tax cases – when sent up from the Federal Court of Appeal. This is usually why you need either a Tax Lawyer or an accountant (usually one from one of the Big 4) on your side when fighting the CRA.

So, employee discounts. I have experienced these myself, when I was but a baby accountant, learning the tricks of the trade and earning just a bit over minimum wage. I worked for Sears Canada for 3yrs, in their Finance Department. There I did get a 15% discount on any items I purchased in the Sears Canada stores. Whenever I would get the discount I would present my employee card and that would get swiped. This argument that keeping track of which discounts an employee gets is a red herring – most employees  have an employee number which can easily be punched into the POS system at the point of purchase. Run the reports from the POS and viola! you have your listing of the discounts the employees have gotten.

The Canadian Income Tax Act is structured in such a way that ALL employees who gain any form of economic benefit through work must be taxed on that economic benefit (i.e., wages). This also includes any benefits received in kind, such as private dental insurance, payment of any membership dues (CPA-CGA in my case) and whatnot. Banks for ages have been forced to tax their employees on the reduced interest rates they pay on any personal loans or mortgages they may have received as part of their renumeration package with the bank.

Do I think it fair to tax these benefits? Yes. By the very notion of the ITA those discounts are an economic benefit. I know some would argue that in some retail shops the employees are required to wear the shop clothes whilst working. In that case, those costs can be claimed as part of a “uniform” as the terms of employment will specifically state this requirement. And this negates the argument of “what of those retail employees who are forced to purchase the shop’s clothes”.

When I worked for Pfizer we had the benefit of the Employee Store, which opened twice a week. So we were able to get OTC products (such as visine, lubriderm, nicorette, purel etc) cheaply. BUT, Pfizer did not discount these products for us. They sold them to us for exactly the same amount that they would sell to Shopper’s Drugmart, Sears, Rexall etc. So there was no dip in the company’s profits, so to speak, to provide a discount to the employees. It’s just the middle man was cut out of the equation. And this fits in perfectly with the new re-interpretation of the ITA.

Now, thinking from the Treasury/CRA point of view, I have a quick & dirty table explaining the effects of providing an employee discount to staff and the effect it has on tax revenues.

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As you can see, when a shop sells to the general public, the tax revenues collected for CRA are significantly higher than providing a discount to the employee under the current system. Yes, in essence, this is a cash grab by CRA to plump up the tax coffers. But if we turn back to what I mentioned earlier – we as employees get taxed on the economic gain from employment (salaries/wages, benefits etc). CRA’s interpretation is looking at what are employee benefits. If you want this changed, the ITA needs to be updated via legislation – meaning Parliament has to make that amendment.

As for those who argue about the free coffee, tea etc they get in the employer’s canteen/kitchenette etc. Under current legislation the employer can only claim half the cost of providing those freebies when filing their corporate tax return. So if they paid $100 for the tea/coffee they can only claim $50 as a business expense – so effectively they need to pay an extra (at 28%) $14.00 to CRA.

So I would suggest before jumping on the bandwagon and flailing the fists that this is unfair, maybe look at the implications on the tax coffers. We all whine that the government keeps cutting benefits & funding, but the coffers need to be more robust so that those cuts don’t happen.

 

Cystoscopy – Oh What a Treat

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Starting in May of this year I was having issues with wee’ing blood and thinking this is not a good thing (having bright red urine) I rushed myself to Southampton General Hospital A&E Department and what followed has been a comedy of errors. Needless to say, so that I don’t bore anyone, the hospital was shit and sent me home with a proverbial shrug of the shoulders – having done nothing. Saw the consultant later that week, twit did nothing except inject a bladder wash of gentamicin and also basically hope for the best.

A month later, having had this as a recurring issue, and NO ONE in this GODFORSAKEN SHITHOLE helping, I came home from work, with urine so thick & so bloody that I was scared. I thought to myself – I work in London, tomorrow after work I’ll drag my fat ass to UCLH to get taken care of. The next morning, on my way into work, my usual dressing over my stoma got soaked within 15 minutes with blood that I spent the entire train ride sitting in the toilet, clutching toilet roll/tissues/gauze/newspapers/anything to stem the flow of blood. Got myself to the hospital and unlike that sorry excuse for a hospital (Southampton) UCLH was able to fix me up.

Today I went in for a cystoscopy, so that they could get a good look into my bladder – without the camera being obscured by blood clots and blood. Good news, my bladder looks good. And what is more excellent news, my primary urological care is now centred in London.

The Registrar (Senior Resident, for those of us from North America) did the cystoscopy, as she was part of the team that helped me in June. We were chatting whilst she was inserting the scope and I told her my last urologist in Canada was Dr S Herschorn. Her mouth fell open and told me that of course I think Southampton is a pile of shit – when I’ve experienced a world class hospital and one of the top surgeons in the world and to go to the craptastic care of a shitty two bit county hospital (that last bit is me embellishign a bit) of course I’m not impressed with the NHS. She, jokingly I assumed, asked me if Dr Herschorn is looking for any Fellows (Fellowship positions with him are quite rare). She also asked me what winters are like in Toronto.

I also had a Chilean Urologist sitting in on the cystoscopy. I asked him how long is he at UCLH etc. He has also heard of Dr Herschorn.

People sometimes wonder why I am not happy with the NHS. Yes, it’s free at the point of use (for the most part) but when I go from world class care to the shit care in Hampshire – of course I’m jaded.

On a more interesting note – and potential reason why I hate Southampton General – one of the drugs they gave me in ICU in 2014 was gentamicin. Chatting with the anaesthetist today, he told me the only way I could permanently lose my hearing from gent is by them overdosing me. So not only did the dickwads overdose me on morphine, but also on gentamicin, and now I am permanently deaf on my right side.

NEVER EVER GO TO THAT SHIT HOSPITAL. GET YOURSELVES TO A GOOD ONE. SUHT SHOULD BE SHUT DOWN UNTIL THEY CAN GET THEIR SHITTY ACTS TOGETHER.

Life with Bladder Exstrophy

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Whilst going through my Facebook this morning, shortly before breakfast, I noticed that an FB friend had posted a brief synopsis of what her life has been like with a chronic condition, a condition which she has had since birth, a condition same as mine – Bladder Exstrophy. I have never been shy about what my health issues are, but maybe a brief history may help other understand why I get really annoyed with the medical community; and hopefully help other see how I have navigated it all, so that they can take inspiration in how they too can advocate for themselves.

I was born in 1971, the first child of two immigrants from Kaunas Lithuania and Punsk Poland. Both my parents were older, by 1970s standards, and really wanted to start a family as soon as possible. I was the first one, and back in those days there were no ultrasounds that could have prepared them for my birth. I was born at Women’s College Hospital in Toronto Canada, and I was almost immediately whisked off to the Hospital for Sick Children (one of the premier international pediatric hospitals). I was lucky enough that my first urologist was a Dr Robert Jeffs – who went on to found the Pediatric Urology Research Centre at John Hopkins University and the teacher/mentor of the current head – Dr Gearhart (who many Bladder Exstrophy parents sing the praises of). I had my first surgery at 2 weeks old – back in those days the initial surgery (called “closure” wasn’t done until the child was 4/5yrs old as a newborn can only really lose about 2tsp of blood before needing a transfusion). So for the first 3 months of my life I was in an incubator, recovering from my first of many surgeries.

To backtrack, what is Bladder Exstrophy? I was born what is known as Classic Bladder Exstrophy – what most surgeons will find in their text books whilst in medical school. We are rarity, most urologists will go their entire careers never having met one of us; depending on which statistic you want to believe, we are either 1:70,000 or 1:30,000, either way we are extremely rare. I was born with a partial opening of my pelvic floor, my bladder inside out and practically a non-existent urethral sphincter (the human body has over 50 sphincters). My first surgery, I have an incision that goes from my anus all the way up to my lower abdomen.

Growing up I was incontinent. I had no psychological support or a social worker to help me understand why I wasn’t normal. All I knew was that I was treated like shit by school mates, because I smelled, I pee’d my pants, I wore diapers. The worst culprits were actually the Lithuanian Community in Toronto, which is why to this day I don’t associate with the Lithuanian Community in Toronto – I’ve found more support from my Canadian friends than the shits that make up my parents’ cultural community. Teachers were no better, I wasn’t allowed to go to the toilet in the middle of class to change my diaper. My coming up several times completely drenched forced my father to take time off work to lay into the school Principal for affecting my health – it took the threat of a lawsuit for the teachers to actually allow me to use the toilet when I needed. This was elementary school – imagine, an 8yr old feeling completely isolated, treated like a pariah by classmates, her cultural community and teachers who refused to believe the letters sent by the Department of Urology from my hospital. I was lonely. I hated myself and hated my body.

What is it like growing up with a chronic condition? I think it depends on the condition itself – because mine is urinary based, there is the standard “oh she’s just lazy, her parents were too lazy to potty train her”.  There is more respect and support for a child with Type 1 Diabetes or a Heart Murmur than a child with a urinary issue – it’s that whole societal attitude that anything to do with the urinary tract is just dirty.

I grew up hating my body, myself. I was molested by one of my father’s cousins. It only stopped when I realised that he was also molesting my siblings and the nuns at my high school, unlike the elementary school, were sincere with saying that we could come to them if there were any issues at home. Those nuns – the Sisters of St Joseph – saved me. They moved to quickly, getting the police involved, the catholic children’s aid society, getting me therapy and yanking my parents in for a conference. It was because of those nuns that I actually started developing a strong sense of self and started advocating for myself.

I have had 10 surgeries so far. I say so far, as I suspect there are many still to come.

What has been the effect on my psyche due to my medical condition? As mentioned, I hated myself. I actually attempted suicide in my teens, the pain was too much. I cannot have children – as I have been warned by multiple surgeons (urologists, uro-gynecologists) that I have a 50/50 chance of surviving a pregnancy. Because of my initial surgery (which included cutting right through my clitoris) and subsequent surgeries I think of my body in a dispassionate fashion, as if it were just a medical specimen.

Effect on my parents? They didn’t have the support they needed either, how does a parent deal with a chronically ill child? They have no one to talk to about it. My paternal grandmother, when she was alive, was a nurse in Australia and she quizzed every possible surgeon about my condition. My parents atleast could talk to her, support each other. My father was so relieved when I told him that I am not having children, as it turns out he was terrified that I may try to get pregnant. My mother has a will of iron and she has always pushed her way into Recovery Rooms, even when family members are not generally allowed. But she too has been influenced by society, thinking while I was growing up that I just needed to make an effort – she wasn’t mean-spirited, she just was trying to do the best for me.

As for the Lithuanian Community in Toronto – I have the most vitrol for it. The treatment I got in Lithuanian daycare, Lithuanian school was truly vile. No one wanted to associate with me, because their stupid parents thought I had a disease, not a physical malformation of my urinary tract. So their precious dumplings were told that they would catch what I have. I was alone for most of Lithuanian School and looking back I’m okay with that, they never would have been decent friends anyways. It was so bad that I remember the essay we were asked to write in our final year of Lithuanian School, of what we learnt about during our 10 years; I wrote that I learnt about discrimination, hatred, prejudice, and how vile people can be. The teachers were shocked, but I stand by my essay at the time. But I am truly thankful and grateful for my non-Lithuanian friends, they have been my rock.

So where am I right now in my journey? I have a husband – which means I have found someone who is willing to take part in my journey. So I have that home support that I have always craved. Because I have been so used to being alone, it is still difficult trying to share as for most of my life I have found it easier to just hide my pain. I’m learning, learning that it’s okay to ask for help, but it’s a process that will take time. In terms of my heath – it is declining.

I have had sepsis twice – someone who uses a catheter has a higher chance of developing sepsis. Because of all the infections I’ve had most antibiotics don’t work on me, in most cases I need to just ride out the pain and pray that my body can yet again deal with the infection on its own. I cannot catheterise anymore, I have an indwelling catheter that needs to be changed every 8 weeks. Everywhere I go I need to think of where all the toilets are, how easy is it to get to them, do I have enough supplies with me in case I have an accident. I need to watch out for potential bladder stones, and because I have an augmented bladder I have a higher chance of bladder cancer.

So that’s my life. At least I have a husband and an insane cat in my life 😊

So to those who have gotten to know me in the UK – when I mention that I would prefer to see a specialist and not some ridiculous GP or a community nurse, it’s usually because they do not have the training to deal with patients with complex medical histories. 🙂

How I miss my Ibuprofen

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I’m sure, anyone who has read my musings, that I am not overly impressed with how pharmaceuticals are dispensed in the UK. Today was no exception, as I had to get a script for Naproxen – which for the average Canadian is known as Aleve – which is available OTC throughout most of Canada.

Some delights:

Pepto Bismol – fully accessible on the shelves in most pharmacies, supermarkets and corner shops in Canada. In the UK, you need to request it from the pharmacy staff – don’t need a prescription, but it is behind the desk and they usually need a chat with you before they sell it to you.

Robaxacet – not available at all in the UK

Melatonin – can get 5mg tablets in most healthfood shops in Canada. In the UK you need to order online because none of the shops carry it.

OTC pain meds – ibuprofen, aspirin, acetominophen (known as paracetamol in the UK) you can get as little as 8 tablets to bottles of 100-200 at a time, readily available off the shelf in most shops in Canada. In the UK, packets of 8-16 usually though can request packets of 32 or 48, can only get 2 packets at a time .. so idiots don’t overdose themselves (except they can just wander over to another shop and get the exact same meds)

Oxycontin – In Ontario they are a controlled substance in that when your doctor writes out a script that script gets registered with the Ministry of Health and you need to show ID to the pharmacist, which then gets logged .. stops people from doctor-hopping and getting multiple scripts for the same drug. In the UK – they look at you as if you’re requested heroin. In the hospital if you are in incredible pain they first offer you bog-standard tylenol – 325mg.

Allegra (antihistimine) – available OTC in Canada. In the UK need a prescription – known as fexofenadene. Most antihistimines available on the shelves in the UK are pretty weak.

Flonase – nasal spray, prescription in Canada, great for dealing with the trials of post-nasal drip. Doesn’t exist in the UK.

That’s just a list of medical shits and how you can access them – Canada vs UK. There’s more joy in that there are a number of grocery products which I wish to high heaven existed here in the UK:

  1. Kraft Dinner (mac & cheese) – available as an import for the glorious price of £4.59 for a small box – usually about $1 in Canada. Can order online through Amazon UK, but a multipack (3 boxes) is over £12
  2. Skinny Cow – ice cream bars & cones, low fat, I liked the chocolate mint I could get at my local Loblaws in Toronto. Can’t get it or any reasonable facsimile of it. Weight Watchers does do frozen desserts, but those are like gold dust in Hampshire trying to find them in Tesco/ASDA/Sainsbury’s
  3. Crystal Lite – powdered drink crystals – low calorie, very prevalent in North America. There is squash here in the UK, which doesn’t exist in Canada. So there is some trade-off there.
  4. Big bags of Pierogies. No Frills & Loblaws and even Metro would carry big 2kg bags of them. Can get them here, but Sainsbury’s has them in tiny 125g pots for reheating for office lunches or you need to go to an Eastern European deli for them.
  5. I have yet to find any havarti cheese since coming to the UK.
  6. Oh Henry, Sweet Marie, Glossettes, Cadbury Thins (I know it’s a British company, but these seem pretty unique to Canada .. 100 calories of cadbury chocolately goodness)
  7. Wendy’s & Tim Horton’s (I know there’s a mythical Timmies somewhere in London .. but out here in the stix nadah)
  8. scent-free feminine hygiene products – I know they exist in the UK, I’ve seen them, but they are rare like the mythical dodo, there are sightings then whoosh! gone. A lot of things are scented here in the UK.
  9. Swiss Chalet sauce
  10. proper bagels .. the shit you can find here in the UK supermarkets is just that, shit. I have yet to find a good poppyseed bagel.

 

Don’t get me wrong, there are certain delights which are unique to the UK which I quite like – but it’s the nanny state thing which drives me nuts the most.

NHS is Sh*te when it comes to Specialist Care

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As some have come to realise, from reading my blog, I have issues with my urinary tract. Specifically, I was born with a condition called Bladder Exstrophy. To help with trying to normalise my life the various surgeons over the years have done surgeries – and these surgeries will continue until the day I die – I am okay with this, as this is *MY* normal. I also have a mitrofanoff stoma, which means I don’t have a urethra anymore (it’s been closed off) and I am completely dependant on being to catheterise through my stoma into my neo-bladder (augmented with intestinal tissue as the blasted thing never grew).

So needless to day, I have bladder issues.

Today I went in to get two things accomplished – (1) a cystoscopy & (2) to get my foley changed; the latter of the two was accomplished. Though, the Sister did send off the old catheter for testing as there was some serious calcification of the catheter and something that looks like some bladder tissue (it hurt when the foley was withdrawn, it normally just tickles).

I was asked 2 questions by the Sister (Senior Nurse): (1) since Southampton General Hospital are experimenting with gentamicin bladder washes would I consider it, and (2) have I ever tried taking d-mannose (it’s a probiotic which is good at adhering to UTI bacteria and flushing them out of the system). I nearly laughed, though I know she was serious — the nursing staff are desperate to learn more and I am one of the few patients who is willing to chat about bladder issues.

The reason(s) why I nearly laughed:

(1) gentamicin bladder washes have been advocated for at least 2 decades in North America — why the hell isn’t the NHS clued up on this? My first inkling of this sad lack of knowledge was when I asked for a script for gentamicin 4yrs ago and the GP and surgeon looked at me as if I were completely nuts asking for IV medication. I would expect the GP to be confused, but a Urologist who claims to be a bladder reconstruction specialist not being aware of this was mind-boggling for me. I have been doing these bladder washes for 20yrs now.

(2) d-mannose has also been advocated for a long time in North America – I’ve been taking it for about 10yrs now.

I wouldn’t expect a urologist who specialises in prostates, testicles and all things “male” to be aware of this, but a specialist who knows that people who catheterise on a regular basis are highly prone to urinary tract infections, cystitis, and kidney infections? How the fuck can they not be aware? Do they not read the various medical journals? One of the best research & facilities in the world for Bladder Health is John Hopkins in Baltimore — do none of these UK urologists take the time to learn what is going on outside of the UK? Or are they so arrogant in their belief that they are the best they cannot be bothered?

This just continues to reiterate how shit the NHS can be when in comparison to other countries. Several things need to happen – surgeons need to be knocked off their pedestals … they are not gods/demi-gods, they are highly skilled professionals and well trained, but they are human and they NEED to keep themselves abreast of all medical research & developments. GPs need to learn their place – they are there to handle basic issues such as sore knees, handing out scripts, doing physicals and helping with general health maintenance — again, they are not gods, they need to listen to patients. It’s the god-complex here in the UK which is driving me nuts .. and I believe the nurses at SUHT like me loads because I do question the surgeons (called Consultants in the UK) and refuse to sign anything until I am fully informed.

So my recommendation? Inform yourselves, because the surgeons at SUHT are too full of themselves to actually educate themselves.

 

NHS Weight Loss vs Slimming World & other fun things

I joined up with Slimming World back in late January of this year, because I wanted to lose weight and feel physically better. I have no delusions that I will ever become a size 8/10, but if I just get my BMI to a more decent level I would be quite happy. I have been steadily working my way towards my goal. And it is a rather modest goal – I am not looking to lose 50kg (though it would be nice) but more manageable expectations.

So I have been merrily doing Slimming World. I am not the most devoted to the plan, I cheat on it, but for the most part I have been sticking to it. Silly things like the “Healthy Extra A” & “Healthy Extra B” (milk & cereal), counting my syns, and making sure I try to stick to the approved food list. For those who remember Weight Watcher’s “Core Program” this is basically it – eat all you want from a particular approved food list. Simple in many ways, as there is no real measuring or weighing.

There are a few things I don’t like about Slimming World and it has nothing to do with the diet per se, but more about the attitude of the Group Leaders and the Group Members. In the first couple of weeks of any given diet a person will tend to lose a lot of weight quickly, but then it tapers off to about 1-2lbs a week. There are people in my group who are aiming for 3-4lbs a week (nearly 2kg a week) and they are doing what SW calls ” Speed Days”. I don’t like these aspects – mostly because people tend to forget that when they were getting chunky (and hence feeling the need for weight loss) they were not piling on 3-5lbs a week, it was usually 0.5lbs one week, 2lbs the next, maybe 0.25lb the next week .. it was gradual so expecting to shift weight quickly is counter-productive — especially since it puts the metabolism into shock.

Now to the part of where the NHS enters into this. When I saw my consultant this past March (consultant is a funny British term used for a specialist doctor/surgeon – like a cardiologist, urologist, obstetrician etc) with regards to my stoma and getting it to work he did a rather thorough cystoscopy under general anaesthetic to see if he could get a catheter in and also to scope out the interior or the bladder. A specialist in bladder reconstructive repair who has performed the Mittrofanoff Procedure multiple times had difficulty getting a catheter into me – and it is due to the pressure on my abdomen from the weight I carry .. so he’s deemed it necessary that I have Gastric By-pass surgery .. except the NHS doesn’t function as quickly as he likes … so I have to go through the whole procedure.

Due to my BMI I have been put onto Tier 3 of the NHS Weight Loss Programme. I am to see a Nutritional Therapist (Registered Dietitian) for 6 months, 6 months of psychological assessment and fitness assessments. Today was my first day with the Nutritional Therapist (Eve) – she doesn’t like Slimming World. After a long conversation this morning it was deemed that my diet is really heavy on the carbs and there are intense highs & lows of sugar levels in my system – which may explain my need to snack in the evening even after I had a meal, especially on something sugary. So what am I suppose to do?:

  • try & have some form of protein in each meal & snack. If I have some fruit for a snack, I should also have some nuts (she recommends almonds)
  • get off the diet drinks – stick to squash or water – the diet drinks are actually counterproductive for weight loss as they trick the brain into thinking that the body is having sugar, it produces insulin and when there isn’t any sugar for the insulin to act against the body craves a huge hit of sugar, which leads to over-eating
  • I am to have one piece of fruit each day, 2 max, the rest of my “5 a day” should be veggies
  • my serving must fit onto a plate with a diameter of no more than 9 inches
  • if I crave an evening snack I am to try having a boiled egg – the egg has a good mix of protein and fats and sugars
  • the goal is food combining
  • I am to continue taking my probiotics
  • if I have potato with my meal, no more than 50g (half a potato), same goes for rice & pasta
  • Mix up my protein intake – it can’t always be chicken. Experiment with chicken, beef, pork, turkey, beans, legumes, duck (occassionally .. it is a fatty meat so should be eaten sparingly) and have at least one vegetarian entree per week
  • wean myself off of muesli
  • DO NOT DO SLIMMING WORLD SPEED DAYS or have a purely Speed Meal .. the meal must be balanced
  • I am to keep track of how my body reacts to everything that I eat – we need to find out what my triggers are, when do I suffer from “brain fog”, when do I feel hungry

So I think I should be able to do this. I have already bought some eggs and some nuts. Tomorrow morning, instead of muesli I shall make myself an omelette – with red pepper, mushrooms and either some bacon lardons or shredded chicken

 

My Stoma is Freaking Me Out

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There are days in which I actually do wish that my pain would end, with sweet blissful death. But in most cases I am fighting so hard to stay alive that I at times believe I’ll out-live the cockroaches – and we all know that not even a nuclear holocaust can kill those little shits.

I know my health situation isn’t that bad, not really. It’s not like I have a physical disability which affects my mobility, or senses. I can easily move around and function in a relatively normal fashion. But it’s this never ending cycle of Urinary Tract Infections, Urinary Retention, Surgeries, Procedures, spend most of my childhood hopped up on medication, and being able to name my body parts as a young 6yr old – using such words as “penis”, “vagina”, “bladder”, “urethra”, “breast”, “abdomen”, while most of my cohorts used words such as “winky”, “boobies”, “cunt”, “tummy”.

My latest joy in life is an indwelling catheter – or more properly termed a “folley”. I have had this sucker for 23 months now. And it has been irritating the crap out of me. I want to be able to use my stoma – I went through 11hrs of brutal surgery to get the stoma, I better be able to use it. But sadly I can’t. Just this past week I spent a couple days up at UCLH (University College London Hospital) so that the Urology Specialist Nurses could check to see if it is possible for me to catheterise on my own. The nurses had difficulty getting a catheter in, and they do hundreds and if a stoma nurse can’t get a catheter in then there is something to worry about.

Saw my Consultant – or for those of you in North America – Staff Surgeon or Specialist. I will need to return to UCLH for further testing, probably being put under so they can do a thorough investigation of my stoma. Where are the issues? Is it the channel itself? Is it the flap leading into the bladder? Is the channel full of scar tissue? These cannot be investigated easily, so I need to go under a general anaesthetic for this. Oh the joy!

My fear is that I will need further surgery. I was warned when I got my Mitrofanoff back in late 2007, that there’s a 30-40% of further revision being needed. Surgeons can work wonders, but it doesn’t matter how good of a surgeon you have no one can predict how the human body will heal.

Back when I was young I was able to bounce back quite easily from surgery. But my last “big” surgery was brutal. I was on the table for 11hrs and I had 2 departmental chiefs working on me. I was finally wheeled onto the ward but whilst on the ward I fell asleep – because my blood pressured plunged to a very dangerous level, my pulse was thready and my breathing wasn’t that great. So I was in ICU for 5 days while they worked on getting my blood pressure stabilised. Once back on the ward, again, I developed multiple infections – my incision got infected & it was turning grey (which means the tissue is dying) so my incision was opened up in 3 places .. took a year for those holes to be closed. My IVs died, going interstitial and no one could start an IV on me. Infectious Diseases and Urology couldn’t do anything – at one point the Residents were able to get blood from my femeral vein, but the sample was tainted. Finally Infectious Diseases got a PICC installed – which is a surgically inserted copper tube in the vein with 4 ports .. that took 3hrs and it was fucking painful.

After being discharged I discovered I got MRSA – so another 10 days in hospital.

This was not a good recovery for me.

And I dread going through something similar. So when the UCLH Specialist Nurses couldn’t catheterise me I cried, great big heavy sobs. I don’t cry that often, but I felt my world crashing. And due to geography I was all alone.

So I am hoping that I don’t need surgery, but the realist in me knows that I will have surgery. The only things to ponder are – when, where, and how intrusive will the surgery be.

 

School Holidays, the UK, and Parents

Bearing in mind that I come from a different country, I do find this whole “the government must stop travel companies from gouging parents/families during the school holiday break(s)” rather interesting.

When I was young my parents did, I think twice, take me out of school to go visit my father’s uncle down in the United States (I’m Canadian) and there wasn’t a big deal with regards to that. I believe that to this day there are no such things as fines (like UK parents have) when a child is taken out of school. But … if a child misses too much schooling they either have to go to summer school or repeat the grade. When I was 11yrs old I had major surgery and was off school for 2 months – so that I wouldn’t fall behind and have to go to summer school/repeat the grade, the hospital (Hospital for Sick Children in Toronto) runs a school room for the patients .. so I was able to keep up with my classmates.

My parents never complained about travel companies ripping us off, nor have I heard any of my child-ed friends complain so vehemently that they *must* take a holiday during the school term if they want to save some money. It’s just a given in most countries that the summer months (July & August) are the high season and prices will be higher.

If we take a moment to pause and think there is a reason why the travel companies and the travel industry as a whole charges more during the “high season” – it’s supply & demand. There is a limited supply – planes, hotel rooms, b&bs, Disney Land, Alton Towers etc. There is a limited supply, so it is in essence “supply & demand”. The various companies need to keep these resources available (hotel rooms etc don’t just magically disappear during the low season, there are still overhead costs such as insurance, marketing, salaries etc to pay) so to do so they need to recoup most of their costs and earn an income during those 2-3 glorious months out of the year.

As a childfree woman I have my own views. Because I don’t have children it has been expected that I would not take a holiday during the high season – as that is prime time for the parents. I can live with that. So I end up with the less than ideal times to take a holiday, so in essence to compensate I pay lower costs. Shit timing = lower costs. Parents get great timing = higher costs. There is a balance in essence.

Now I see that there has been a push by British Parents to get the various councils & the national government to legislate fairness to the industry. So the idea is to shift the holidays around so that there is a week off in October or each area has a different timing for this. I do not like this, why? It’s a short-term gain for families .. they will get great prices, for a short while. But then the travel industry will twig, rather quickly, and prices will shoot up again. So the end result is, that peeps like me who have to take shitting times for our holidays are now paying astronomical prices (compared to what they usually are). Aaaaannnd, it will be the exact same argument – I need to take a holiday when it’s cheaper, please Mr Government Minister, put through laws which you have no jurisdiction over, so I can save a few pounds.

I have never heard any of my other friends or acquaintances complain about having to pay more because they have children; it’s considered one of the costs of having children. But in the UK there are at least 1 or 2 articles or opinion pieces in the news media about how the travel industry takes advantage of families. I may sound harsh when I say this – but no one has a human right to splay themselves on a beach in Ibiza or the Maldives. Everyone is entitled to a break, to rest, relax and recuperate .. which I am not denying anyone, but being able to go to Greece for your holidays is not a human right, it’s a priviledge.

So instead of expecting others to subsidise families further, which is what this is, just accept the fact you have children and there are costs involved in rearing them. If the travel industry spreads the costs across the year to even them out people who cannot have the optimum summer holiday (because they don’t have children) are still stuck with the more bleaker months, but are now subsidising those who still get preferential treatment when it comes to booking time off work.

My Least Favourite Time of the Year

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Ever since I’ve moved over to the UK Christmas has not been my favourite time of the year. To be honest, I never really liked it, but it was mostly a bemused attitude towards Christmas-time. Now I just dread it.

What do I miss? Am I missing something? I am missing my family – which right now is just my mother and brother. I miss Kucios. I am used to getting together with family, and family friends, sharing in the 12 meatless dishes, breaking bread, sharing blessings on each other, and reminiscing about loved ones who have passed away. My Christmas was always a quiet and reflective and peaceful time. My parents never showered us with gifts. We did not write letters to Santa either, as there is no Santa Claus in my parents’ traditions – there’s Grandfather Christmas, he wasn’t the kindly fat old man that most kids seem to believe in. I think I was 6yrs old when I had my biggest haul – a batmobile, a barbie and a toy ambulance.

Now I live in the UK and have a new family – my husband’s. It’s a completely different cultural experience for me. As a reminder, my parents are Lithuanian so I grew up with Lithuanian customs and traditions. My husband is English, so I am trying to get used to English/British traditions, but it’s hard. The meal is difficult for me – the focus seems to be eating as much as you can, and then ripping through tonnes of wrapping paper to find something that was originally on your Wish List (that was distributed to the family) anyways, so you have a fair idea of what you’re getting. Part of the joy with my family was that I never knew what I was getting, it was always a surprise .. and was an indication that they thought long & hard as to what they should get you (or at least that is the general idea .. sometimes it was just socks).

For me the evening of December 24th was the magical time. December 25th is a nothing day to me – it’s a day to get together with friends at the local chinese restaurant, have a meal and maybe go see a movie.

So I’ll try and enjoy Christmas, but I am desperately missing my mother and enjoying my own cultural traditions. I believe my ennui in many ways is due to the fact that I don’t really get to celebrate my cultural traditions – I feel stifled in many ways in that regard.