An Open Forum for Disibility and Invisibe Illness Awareness

Archive for November, 2010

Trust me, I’m a Doctor…..

November 28th…

We do trust our doctors, literally with our lives. They are learned, experienced and we happily trot along to see them, safe in the knowledge that they will cure our ills with a wave of their pen..

Until they mess up. And mess up. And mess up again… Slowly but surely I have lost my whole-of-life, total, blind-faith in the medical profession and instead am now full of mistrust, criticism and oft-times, disdain.

Having been ill now for roughly 8 years (discounting the CFS I’ve had since I was about 12, following a bout of Glandular Fever), and still being officially undiagnosed, I think I have the right to feel this way. Dont get me wrong, I LOVE the NHS.. having lived in Spain for 5 years, I appreciate our fantastic system and hard-working professionals. I threw my rose-tinted glasses away and stamped on them though, about a year ago.

I have had “weirdness” now for the past 8 years.. shaking, numb patches, dizziness and vision disturbances being the worst of my problems. I’ve had various tests and have always been sent away with “we don’t know what it is, maybe stress?” Last year I added pain in my hands and feet to my symptoms and again, consulted a doctor. This one did blood tests and found my inflammation levels to be high and so referred me to a Rheumatologist. I was living in Kent at the time and duly attended to be told that I showed classic symptoms of Rheumatoid Arthritis but they needed some more tests to be sure. Due to family illness, I moved to Bedfordshire at this time but returned to Kent to have full body bone-scans last November.

Results came in.. but as I had moved, I was discharged from my Rheumatologist in Kent and the test results were posted.. and never arrived. I remember phoning the Kent hospital at least 4 times, each time I was given the promise that the results would be re-sent to my GP, each time they weren’t. In the meantime, I managed to convince my GP that my foot pain had worsened and that I should see a Rheumatologist at my local hospital. At that time he started me on medication for Rheumatoid Arthritis as he too believed that was the cause of my problems.

I arrived at the hospital, full of hope that either the results from Kent would have arrived and show something up, or that I would be diagnosed/treated at last. The doctor was an ass. I don’t say that lightly. To be fair, he didn’t have my results but barely examined me, kept asking if he knew me as I looked so familiar and sent me on my way with a referral to Psychology as I obviously had “a woman of your age’s aches and pains”.

I was beside myself. I made it out of his office and to the stairs, where I sat and cried my heart out with frustration, humiliation and despair. You KNOW when there is something wrong with your body, I believe that 100%. The Psychology appointment letter arrived so I wrote to reject it, making a point of stating that I knew the “specialist” was wrong in his diagnosis. #mybad (it seems that we are not “allowed” to self-diagnose nor disagree with our doctors).

I digress.. shortly after, I received a letter from my GP asking me to make an appointment at which I was told they had finally received my files from Kent. Halelluliah.. I had Hallux Rigidus (arthritis) of my big, right toe. At last I had a name for the pain, even though its kinda hard to pronounce : )

In March I saw an orthopedic surgeon who told me I needed a Chilectomy (bone shave to remove the excess bone growth on my toe) and added me to his waiting list. I waited. I waited some more. I developed pain in my left toe and worsening pain in the whole of my right foot. I waited on.. In April I hurt my neck while putting a trampoline together, I called the emergency doctor out one night as it was so painful, hot and swollen. He gave me painkillers and sleeping pills.. ahhhhh… sleep…

In June, after much nagging, I was re-referred to the orthopedics department as I was so concerned about the deterioration in my right foot and felt that the bone shave would be a waste of time and money as the bone was growing so fast. I am certain that unless the cause of the problem was treated, the bone growth would continue. The consultant disagreed, didn’t take any new X-Rays and sent me off with a flea in his ear for wasting his time.

Since then my GP has performed acupuncture, signed me off work, taken me off the arthritis meds (as they were damaging my liver) and upped my painkillers several times. In August I was seen by a different specialist surgeon for my left foot, who agreed with me that I need a different operation on my right one and then proceeded to discharge me accidentally.

So here I am, months later and now barely able to walk. My neck is on fire as are my feet and I am in constant, severe pain. Tomorrow I will finally see a Rheumatologist about my neck, on Wednesday I have an appointment with the specialist foot surgeon, having been re-referred after breaking down in the GP’s office a month ago. Hope is in sight again..

Respect their soul… by Tony Martin

My cat has a flea allergy. It only takes one bite and it sets him off. He scratches and looks tatty, and he also gets depressed. He will take himself off to a dark corner and sit. He hasn’t the sort of brain that can decide to do that. His brain is focused on food, hunting, sleeping and females.

A human being also doesn’t choose to get depressed. Our brains can make decisions, we can choose what music we like, what food we like and lots of different things, but we don’t choose depression.

Now my therapist would, I think, say we can choose to be happy. I’m undecided about that at the moment. What I do know is that depression is a reaction of the soul to outside circumstances. Some people have a chemical imbalance it seems, and medication works, however there has been no evidence ever to prove this is true. That doesn’t mean it isn’t. This is my article though and I’m writing about how I see things. So you might not agree and frankly I don’t care. I do care very much about people though and I think most people who get depressed tend to have that trait to their personality.

Having depression is frightening. Fear is a regular visitor. I can be afraid to be happy and I can be afraid to be unhappy. The in-between is safer and that is depression. Depression for me started very early. My Mother suffers with depression but in her day it was called “nerves”. Because of my Mother’s nerves I was sent away at about 2 years of age because I was “always crying”. Actually the fact was she couldn’t cope with a baby. I understand now how hard it must have been for her.

When someone is depressed things are hard. Demands on a person become huge. Expectations like lead weights. Cooking can seem impossible. A bath too much to contemplate. And that doesn’t mean all people who are depressed smell and don’t eat. I’m very particular about things like that. In fact depression can also make it hard to relax, break routine. Being very clean can be a reaction to depression as much as not being able to face a bath.

I am finding it hard to write about depression because it isn’t something separate from me. It’s a reaction of my soul. So it is entwined with who I am.
I am not always, in fact I’m never, sat in a corner unable to move. This is the great fallacy. People with depression are not weak. We are very strong. I am strong. I’m funny. I get pleasure from the smallest things. A ladybird can be fascinating and beautiful to me. I enjoy laughing.

I believe depression is a result of a lack of love, recognition, stimulus, fun. It’s when the little person looks at the grown up as their God and God is screwed up. If God, who is always right, all-wise, all-powerful, if he does something, like withhold love, then the little person believes they are bad. Because God (the parent) is good. This was my depressions birth.

We are all unique, depression is unique to each person. A doctor giving antidepressants out is akin to a mechanic handing you a spanner when you take your car in complaining somethings not right.
This is why I would advise anyone, who knows someone who is depressed, to listen. Forget every book you ever read. Every time you felt low. Treat a person who is depressed as you would anyone. Listen to them, give them your time. Treat them as an equal. They have depression, and they also have a soul.

Respect their soul.

Tony Martin ( @redfoxcountry )
Confucius: Have no friends not equal to yourself

Vitiligo.. anon

When I was a kid, I was – for one reason or another, usually childish malingering – in the GP’s surgery more often than a kid should care to be. The GP would always say that I looked “very pale.” He encouraged my mum to get me out into the sunlight as frequently as possible. Mum concurred, and I was thrust into the world at every available opportunity to become more “healthy looking.”

I went brown, and then I went browner still. I felt that being light-skinned was something to be ashamed of. By the time I was 37 I was the brownest white person this side of Greece (if you can forget for a moment that Jodie Marsh ever existed). I was the Tanning Champion of the World. So dark-skinned was I that people would ask me if I was “from the Med.” I was quite proud of this. Nobody, but nobody, could ever accuse me of looking “pale and unhealthy.”

And then – irony of ironies – I got vitiligo.

What the hell is vitiligo? Nope, I wouldn’t have known either if I didn’t have the bloody thing. Vitiligo (pronounced vit-ill-eye-go) is a skin disease that causes patches of your skin to go white. And by white I don’t mean creamy or pinky or celtic white, I mean white white. Paper white. Cue ball white. Corpse white. What happens is that the cells responsible for your skin’s pigmentation (melanocytes) cease to function: they have, in all likelihood, been killed off by a wayward immune system. There is no known cure. Its only physical effect is the depigmentation of your skin. (For a more in-depth description of vitiligo, its symptoms, and its effects, you can read more at The Vitiligo Society website

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My vitiligo began on my face, of all places, in Spring 2008. As I hadn’t seen the sun in a good while, I thought at first that last summer’s tan was fading unevenly. I thought it was odd but no more. Over the course of the next few weeks the patchiness on my face became increasingly pronounced, and I began to seriously worry about it. There were brown patches on my face that seemed to be getting darker, and there were lighter patches on my face that were definitely getting lighter. (My dark skin wasn’t, in fact, getting darker – this was an illusion created by the lighter patches). And then, in the blink of an eye, I was – and I hate this word but it’s probably the most apt one – piebald. People began staring at me in the street (some of the fuckers literally craning their necks to get a better look). I began to find it difficult to leave the house. I wondered what the hell was wrong with me.

Shortly after my face began to depigment, other areas of my body began to follow suit. I suddenly had some white fingers and I had some brown fingers. My neck, my chest, my legs, everywhere, went patchy. I was pretty much devastated.

Within a couple of months I went from being a normal, not unconfident, person to a shell of a man. I stopped going to work. I stopped seeing my friends. I just stopped, full stop. I felt that I looked like someone who’d had a bucket of acid thrown over them.

After about three months isolation, with some total areas of depigmentation on my now map-like face and body, I motivated myself to go to the GP. The stares on the way to the surgery and in the waiting room were horrible. I felt like a freak. I was a shaking, anxiety-ridden wreck. From the GP to the hospital and blood tests for Addison’s Disease and thyroid disorders… My bloods were ok, thankfully. Then I saw a dermatologist, who confirmed that I did indeed have vitiligo and prescribed… a floppy hat. I must never, ever, go in the sun again, I must wear sunblock even in the winter (I can burn in literally two minutes on a sunny day), and the best I could hope for was that the depigmentation would be total, and fast.

The dermatologist did, however, book me an appointment with the Red Cross. The Red Cross is the only organisation in the UK that provides a skin-colouring test for the provision of what they call “camouflage” for vitiligo sufferers. What happens is that you sit in a chair while a very nice elderly lady takes out several pots of a hard, muddy substance, and “fills in” your white patches using a finger dabbed in that substance. The colour that matched my dark patches was “Light Indian.” I asked the nice lady if this was a very common disorder and she told me it was, and that she’d just had a nineteen year old girl in with a level of depigmentation not dissimilar to my own. I felt so, so sorry for that poor girl. If this condition had so shafted me – a middle-aged working class bloke from Brum – then what the hell must it be doing to a young girl like that? I made a donation to the Red Cross and went off with my little pot of mud, feeling miserable for a girl I’d never met, but hopeful that this tiny pot might help get my life back on track.

I used the pot of mud for the next few months. It would take about two hours to accurately fill in the depigmented gaps on my face. It was an extremely tedious process. I had some sort of powder to put on top of it to make it waterproof, but I couldn’t get on with it and usually left it, hoping to god it wouldn’t rain. Sometimes I’d put too much mud on and have to wash it all off and start again. But I thought I looked ok-ish when it was all done properly. I started getting out and about again. I regained a semblance of confidence, and my totally ballsed-up self-esteem scraped itself off rock bottom to somewhere near the bottom. I began working for my dad’s business. It wasn’t my line of work but it was something. I grew my hair long to cover my horribly patchy neck. My friends and family were by now aware of the problem and kept schtum about it, like you do. Then, in a jewellers shop in Brum, a shop assistant asked me if I was “in the theatre.” I asked her what she meant and she said that she wondered, seeing as I was wearing makeup, if I was an actor. I could have died.

I carried on using the mud but with a lot less confidence. I was afraid to get too close to people I didn’t know in case they noticed my “camouflage” too.

Last year, my face thankfully became totally white. I think I’m lucky in a way as the process of depigmentation seems to have stopped now. I have completely white face and hands. Everywhere else is, and will probably remain, patchy brown and white. I would have been really pissed off if the depigmentation had stopped when I had two brown cheeks. That would have been just rubbish.

As it stands, I now tend to just use tinted moisturiser or (dare I say it, being a bloke) foundation. There, said it. I’m not ashamed of that, just a bit embarrassed. I don’t attempt to look brown; my only desire is to take the corpse-like glare off my face. I hate going out in the daylight, and I rarely go to “new” places, just in case the lighting is too severe. I still don’t like being too close to people, and I perpetually worry if I’ve got my colour “right.” I don’t think I’ll ever be the person I was in my former life, but I’m slowly getting to grips with it.

My children, bless their souls, remind me from time to time how bad I look. My partner paid me a compliment the other week to which my eldest said “How can you say that, mummy – look at his hideous skin!”

There are several different “classes” of vitiligo. The class or type you have depends on the areas where depigmentation has occurred. Some sufferers’ depigmentation is restricted to one area, for example to a hand or an arm. You have probably seen someone with this type of vitiligo. I think it’s the most common. It is known as “focal” vitiligo. The rapper Krizz Kaliko has this. Krizz’s depigmentation occurs around his eyes. His first album was actually called “Vitiligo.”

 

“Universal” vitiligo is the class applicable to me. This is when depigmentation occurs over the whole body. I suspect that the most famous vitiligo sufferer, Michael Jackson, might have had this type of vitiligo too. I was never a Jacko fan, but it annoys me when people insinuate that he was attempting to become a “white man.” If he did have his skin bleached then that would most likely have been to “even out” his colour. Bleaching treatment is available in the US for vitiligo sufferers.

Editor note:

N.B: it has been widely reported that Prince Michael Jackson (Michael’s eldest son) is also a vitiligo sufferer,  at least putting to bed the rumours of his parenthood I suppose..

My Son and I….

I am Chaosgerbil on Twitter, here are the pieces about myself and my son and how we all cope with our disabilities.

Myself :-

In the past I have worked in retail, manual labour on the railways replacing track etc, done a job where I was driving up to a thousand miles a week to get to various sites and taught karate.

All of those things are definitely in the past now as I find it increasingly difficult to even leave the house. My problems started when I was 18 and dislocated my knee, the surgeon explained that my kneecaps sit too high in their joints and are very loose. Over the years I have had multiple full dislocations of both knees
and partial ‘slips’. This has led to at present 5 operations, 2 on the left knee and 3 on the right. My last operation was supposed to be for a partial knee replacement but my surgeon decided on opening me up that he could clean the areas sufficiently and put off the replacements I will eventually need a little longer. If this operation is successful then I will need the same or a replacement doing on my left knee as they are both in a similar condition.

I have osteo-arthritis in each knee which has been confirmed to be spreading to other joints in my body, no cartilage in my knees from years of wear and tear, diabetes, depression (which I had before my knees got really bad but has steadily got worse) and just over three years ago was diagnosed with a condition called Neuropathic pain in my right shoulder, this condition is caused by a nerve going into fault and constantly sending pain signals of various types down my arm and up into my neck and head.

Besides the knee operations pain management is the only treatment for the arthritis and neuropathic pain. I have regular supra-scapula nerve blocker injections and am on three different painkillers plus an antidepressant that has nerve block qualities and liquid morphine for the really bad days.

As the pain and mobility levels have got steadily worse my ability to walk, do household chores and even play with my son have steadily decreased. I feel like a prisoner in my own house and body some days. This also means that steadily my wife is forced to do more and more on top of a part-time job, even having to change her hours at work as I am unable to walk to the end of the street to collect our son from school.

I have recently been awarded Disability Living Allowance, higher rate mobility and low rate care allowance. We have opted to use the mobility component to get a car as we currently have to rely on public transport and taxis which limits my ability to get out greatly. Hopefully this will help to give the whole family the chance to get out and enjoy life a little more, even if it is only trips to the shops or our local ice hockey team.

Having read Nadine Dorries comments about disabled people on Twitter I would like her to spend a day in my position or that of other friends on Twitter who are of sound mind but for various reasons considered disabled or house-bound.

Our son :-

Ben was born with a rare genetic condition called Phenylketonuria, his condition was diagnosed via the heel prick test that all babies in the UK undergo. At 10 days old we were told by the midwife to contact Pendlebury hospital as a matter of urgency.

When you have a new-born baby and a department you have never heard of asks if you can get down to see them the same day some degree of panic enters your heart. The panic was nothing compared to the reality of being told that your child has a condition that if not treated carefully with measured quantities of special formula and later a very strict diet then they will be brain-damaged is nothing short of the world falling apart.
PKU (phenylketonuria) is a condition where the body does not break down one of the base proteins found in meat, dairy, nuts and most other foods properly. If untreated the protein builds up and causes the neuro transmitters in the brain to clog, eventually leading to brain damage.

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Ben is a bright, energetic and absolutely normal 9 year old boy. He is no different to any of his class mates at school to look at, but looks can be deceptive. PKU requires a strict diet and foul tasting supplement drinks for life. The amount of supplement is carefully worked out by the dietitians at hospital to match Bens size/weight and food intake. A lot of foods are off the menu completely, no fish, meat, dairy, soya, nuts and anything else considered high protein. No drinks that say ‘contains a source of phenylalanine’. Some other foods can be given as ‘exchanges’ as Ben needs some of the protein to ensure he grows and develops properly, the exchanges have to be in weighed and measured amounts. The amount of exchanges is dictated by regular blood spot tests sent to hospital to check on the amount of phenylalanine in his blood. Fruit, salad and some other foods are considered ‘frees’ and Ben can eat as much of these as he likes.

Special mixes are available on prescription so we can make Ben bread, cakes and other low protein foods to help make his diet more varied. Snack pots, some biscuits etc are also available on prescription but the low protein alternatives are not the most palatable foodstuffs in the world.

We applied for DLA for Ben as his condition requires constant monitoring and he needs cajoling into drinking his supplements all the time, up to an hour a time, 3 times a day at present. We were refused DlA initially and after a failed appeal and finally being successful at tribunal got his award.

DLA is not a financial reward for being ill, it is much-needed help for families such as ourselves to give Ben the best start in life we can. We do not live in the best part of Manchester and our health visitor actually said to us ‘don’t take this the wrong way but I am glad it was your son who has PKU’, this may sound a cruel statement but what she meant was that she knew we would try our hardest to make sure everything was done right for our little boy, unlike some families who would not take the initiative or even try to keep to the diet or use the formulas necessary to ensure their child grew up as normal as possible.

Life isn’t easy for us or for many families with disabled people or relatives. But we are real people, normal people who want to be treated fairly and decently. Please don’t just look at the walking stick, wheelchair or take a step back when strange disorders or mental health issues are mentioned. We have hobbies, interests and most of us a life that is so much more than being ‘disabled’.

As a family we attend our local ice hockey games as often as possible, Ben has the same interests as any other 9 yr old and I enjoy reading, chatting on Twitter and taking and editing photographs. Yes some days our disabilities stop us from doing what we want to and limit us from the things we used to do, but that doesn’t make us any less of a person.