help a total stranger

question: what's worse than getting cancer? (sounds like the start of a bad joke i know, but bear with me).answer: getting cancer twice.

question: what's worse than getting cancer twice?

answer: getting cancer a third time.

imagine how getting leukemia in your teens could really put you off your stride. imagine getting rid of cancer and it coming back. imagine having cancer and continuing to work at your job (in a bank of all places). imagine having insurance, but still needing to pay $80k.

one person who doesn't need to imagine the above paragraph is Rachel Hunnicutt-Knight. she is going through it. you can help. you can also go back and play crappy games on facebook. helping would be much better though. imagine going to bed and lying down thinking "i performed an altruistic act today". like the episode of friends where Joey and Phoebe try and find a truly selfless act, you might get a good feeling.

don't worry about that.

if you can donate some money to help out, you can donate at Got-Marrow.org. the site was created by a friend of Rachel's family.

maybe it's a scam, i've heard about these things. scams exist. sad fact. some people are absolute bawbags, but i stake my reputation (for what it's worth) on the genuineness of Rachel's predicament. why? 2 blokes. Doc and Rob Jones. both stand up guys, more sensible than some shifty types you can find on forums. Doc is a rambling madman (his words) and addresses the repercussions of scams on genuine cases.

Rob Jones who made the Got-Marrow site isn't just some fly-by-night-cowboy either. he is a cowboy though. and he's older than than the internets.

if you've hung around forums such as digital point, v7n, or netbuilders, you will have probably run in to them at some point.

if you can't donate to help a total stranger, you still help by spreading the word, even posting on facebook.

you can also read Rachel's blog, it's a doable deal, and then she wont be a stranger to you.

I want to kill myself

i want to kill myself. not the happiest thought in the world but there you go. can't say it hasn't popped into my head more than a few times.

why would i want to pop my own clogs? well, chronic pain gets you down. it's hard to communicate to someone who hasn't experienced it, even doctors. they just seem to want to hand out pills and that's you. they feel they have done their job, but you still have to go on hurting. it seemed sensible. i'm only 32 now and have been having various pains for 5 years, why should i go on hurting for the forseeable future? bleak maybe, but when you talk to an 83 year old and he seems fitter than you with no pain except a 'little loss of feeling in his feet due to diabetes,' i think bleakness was warranted.




having doctors look at you and say 'well you look pretty fit' doesn't help matters. the thought occurs to you that maybe it's in your head. random disparate symptoms that seem unconnected seem to attract the wonderful diagnosis of fibromyalgia. that never sat well with me, so the search went on.

fibromyalgia led to hypermobility which led to London which led to a diagnosis of Ehlers-Danlos syndrome, an incurable connective tissue disorder. yay.

knowing is better than not knowing. having a diagnosis is a great thing, having been in limbo for half a decade with chiropractors quite willing to just keep taking my money. i'm sure there are many good ones out there, but when a patient doesn't get better and actually gets worse, you have to wonder how they sleep at night.

knowing what i have at least gives some guidelines on how to live my life better with less pain and who knows, maybe even some painkillers that will work and have no side effects. what's more is a renewed focus. not having to search for an answer to that, i can have another goal: back to uni to study a post grad.

maybe there is too much to do to bump oneself off just yet.

:)

I Know What I Am

i'm a mutant.

after years of various pains, i finally have a diagnosis: ehlers-danlos syndrome.

not entirely unexpected but still a little surprising. a rheumatologist told me that i was hypermobile last year. i eventually got an appointment down in London last week with professor Rodney Grahame of university college hospital.

the professor spent over an hour with me! Bulbgirl, who accompanied me down south, said that a couple of people in the waiting room were annoyed at the delay. as i had come down from Glasgow the prof must have spent a little extra time with me.

are you aware that there is a hypermobility clinic in Glasgow? he asked me. i'd heard rumour of a pain clinic, but one would have imagined that the rheumatologist i'd seen might have mentioned this little fact. i'm still glad we went down to London and that the leading doctor in this disorder gave me the diagnosis.

even all the experts don't agree. some call it JHS (joint hypermobility syndrome), BJHS (benign joint hypermobility syndrome), EDS, HEDS, HMS, EDS3. it gets all very confusing.

wiki ehlers-danlos sydrome. hypermobility (type 3)

Affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant mechanism. Mutations in either of two separate genes (which are also involved in Vascular EDS and Tenascin-X deficiency EDS, respectively) may lead to this variant; it is the only type of EDS that cannot be diagnosed through skin / tissue samples but is rather diagnosed through use of clinical observations. Symptoms can include easy bruising, velvety-smooth skin, mildly hyperextensible skin, and loose, unstable joints. Joint dislocations and subluxations are common. Degenerative joint disease can occur; the pain associated with this condition is a serious complication. Some individuals have mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, particularly dental surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse.

when telling professor Grahame that my rheumatologist put me on the list for genetic testing, he said but there isn't a genetic test for your type yet. he knew his stuff far more than anyone i've met up until now. i could have talked to him all day.

i love the X-men movies. it's a little unfair that my special mutant power is chronic pain. adamantium claws, or being able to control the weather would be much more fun.

Helicobacter

after having an endoscopy a couple of weeks ago, i got the results. apparently there is bacteria in my stomach. i got a call from the gp confirming this and telling me to come to the health centre to pick up my medicine. the girl on the phone sounded really young then mentioned "irradiation." it must be pretty bad if i have to pick up the medication at the health centre "i thought to myself", normally one picks up a prescription.





sure enough it was a prescription and a newbie on the phone who was giving out garbled messages. at the health centre they couldn't even tell what type of bacteria in my stomach was causing too much acid, and preventing me from keeping food down. bacteria in the stomach seemed like saying "blood in the veins". what do i know about biology though?

electron scanning microscope pic of helicobacter bacteria. i think they look pretty cute.

the pharmacist told me that the medication was probably for helicobacter. pharmacists train for nearly as long as gp's and usually have a more friendly manner. my sister had the same thing a few years ago, and suffered from acid reflux too. i wonder if there is a link there? my sister studied biology at university, and heard somewhere that a lot of people in the Glasgow area have helicobacter. According to wikipedia:

The most widely known species of the genus is H. pylori which
infects up to 50% of the human population.

it also says:

Acid reflux and esophageal cancer

As the incidence of gastric cancer has
decreased,
the incidences of gastroesophageal
reflux disease and esophageal cancer have
increased dramatically. In 1996, Martin J. Blaser put
forward the theory that H.pylori might also have a beneficial effect: by regulating the acidity of the stomach contents, it lowers the impact of
regurgitation of gastric acid into the esophagus.[3]
While some favorable evidence has been accumulated, as of 2005 the theory is
not universally accepted.

i have no idea what that means, if anything, but the medicine is making me feel pretty pukey as the pharmacist said it would. i'm keeping food down better so hopefully this will work.

to get rid of the helicobacter bacteria, i have to take 8 pills a day. 4 in the morning and 4 at night. they give you a horrible 'medical' taste in your mouth all day. chocolate spread helps but the taste comes back. it's only a few more days until they are all finished though, so hopefully all will be well then.

Light Snack

yesterday i didn't eat much. i had a light snack, or a snack of light. i had to have a medical procedure at the southern general hospital: an endoscopy. that's the one where they put a camera down your throat, not the other end. they need to give me this as my stomach has i've had some trouble with keeping food down and acid reflux.

it was scheduled for 8.30am, and i last ate anything about 6.30pm the night before. the leaflet i was given told me to not eat or drink anything from midnight, but my last herbal tea was about 9pm to be on the safe side.

the hospital staff were running a little late even though i was first of the day. they were dealing with other patients who were already in there, not just visiting like myself. the nurses were very nice and explained everything to me. i imagined it to be like visiting the dentist, but it was a more 'hospitally' visit than i imagined it would be: having to wear one of those gowns that split up the back, and giving me a name tag around my wrist, then wheeling me through on gurney.



the camera with the light on it could have been damaged by my tongue piercing so they asked if it could be taken out. i wasn't allowed to watch the monitor and see my insides unfortunately, only if you were getting the tube up "the other end" could you watch i was told. they sprayed the inside of my mouth a few times with an anaesthetic spray which tasted of bananas. laying down on my left side a nurse gave me one of those plastic things with a hole in it so that i could still breathe and not bite down on the camera tube.

my left arm was laid across in front of my right arm and resting on my right hip. they put one of those things to measure pulse or whatever on my index finger and a reassuring hand was laid on top of mine. this was probably not to reassure me but to prevent me from pulling the tube out if i started to gag and my body's normal self defence measures kicked in. who knows?

the endoscopy procedure was really quick, well once i had actually swallowed the tube. this is difficult when your throat had been numbed, the swallow muscles just didn't seem to want to swallow. having a camera/light down your throat brought to mind the facehugger from Alien, but it was mercifully short and didn't implant anything in my chest. on the contrary actually, a little bit of my stomach lining was taken out to biopsy. my stomach hurt a little after that, but was given the all clear. that means the rheumatologist can start testing me like a guineau pig on different meds.

after a wee lie down getting the tongue piercing back in again was difficult the most difficult part, almost creating a new hole in the process with the metal stud, not a sharp implement. i must have ripped away the protective layer that had built up on the inside of the tongue. this is actually the second time that's happened, it will heal soon.

after going to the hospital and having a sleep, Bulbgirl woke me up with a chocolate soya drink. perfect way to wake up.

Hydrotherapy / Floatation Therapy

since just before christmas i have been visiting a hospital and getting hydrotherapy. before you get pictures in your head of me doing aquarobics with elderly ladies, it's actually a small pool in which a physiotherapist shows me gentle exercises. i say gentle, but actually mean "harder than one first suspects."

when i saw a physio at my local health centre she asked me to mark on a diagram where my pain was. after i gave her the diagram back, and it looked like it had been used for target practice, she didn't think acupuncture was going to do the trick so prescribed hydrotherapy instead. has it worked? not really, the pains are still there and it's tough work, but at least it got me out and about. they say it's important for hypermobile people to keep their fitness levels up, even if it hurts a little. otherwise you can end up staying in bed, and it's just a vicious circle from there.

the resistance of your limbs through the water provide a little more force than doing the same movements out of water, while the rest of your body is gently supported and feeling a little buoyant. the water in the hydrotherapy pool is slightly warmer than at the local swimming baths so it's more comfortable to be in.

after doing all they could for me, and showing me the exercises tailored to my body, they moved me on to seeing a physio on land. i've only been a couple of times but the main focus is on doing small push ups without the scapula winging. the idea is to strengthen all the small muscles around the shoulder area and stop my shoulder blades from sliding out so easily.

as well as water to exercise in, water can also be used for rest. using a floatation tank can be just what the body needs. it's at body temperature, nowhere near as warm as the hydro pool, but it is far more supportive. so much so, that it is impossible to sink, even when your asleep (i don't recommend sleeping on your front).

unfortunately my local floatation tank is out of commission for a few days. i found this out when in need of float yesterday. maybe i should get work towards getting one myself, and leading others to experience the rest it gives.

Mother Tongue

i'm a mummy's boy, and apparently have the perfect tongue for piercing.

mother's day, or mothering sunday was on the 2nd of march here in the uk but is on the second sunday of may (11th may in 2008) in the states. everyday is mother's day for me, but it's one of those days when we have to be extra nice to our mothers. that means not telling her you just got your tongue pierced. on her return journey from australia recently, my mamma said that she'd tried unsuccesfully to watch elizabeth, starring cate blanchett. watching and flying put her off the movie.

while shopping for an elizabethan gift (eventually the dvd and a beautifully illustrated book were chosen) i told Bulbgirl that i had to check something out. while in glasgow city centre i thought i'd do something that had been put off since last week. bulbgirl had a few guesses:

"is it art?" "no."
"is it music?" "no."
"is it food?" "no."

she soon realised what was to be checked out when we were standing outside nirvana body piercing. after enquiring about tongue piercing they took me right after someone who had made an appointment. the piercer, john, was great at laying out what he was going to do. and clean? i think it's probably cleaner than most hospitals, with the attention that john puts into washing, wearing surgical gloves, and using sterile instruments only once!

the procedure was a doddle in john's capable hands. a slight sharp pain and the bar was inserted. i was handed mouthwash (maybe dental bleach?) and given a run through of after care procedures. john said that my tongue would swell up probably by tuesday, and then be fine in 7-10 days. he also added that i'd probably regret having it done for a day or so. it's now the wee small hours of thursday morning, and it's been no bother so far.

i couldn't even feel the pain of the tongue that first night. my regular body pains outdid any piercing pain. is even a short walk in glasgow too much for me these days? pacing myself is something i've tried but some days my stamina just seems to evaporate.

a cool trick that i learned from house m.d is to use pain as a distraction. bulbgirl and i have been making our way through the first 2 series of house. in one episode, hugh laurie damages his hand on purpose, creating pain there, which also lessens the chronic pain in his leg. something to do with pain pathways, or the like. i don't know exactly how it works but tried it the next night. when experiencing joint/body pains i pushed the tongue piercing against my teeth to make it hurt more. it hurt a little, but seemed to take the edge off the rest of the body pains momentarily. is the answer to pain medication more pain (or just a different type of pain)?

anyway, john the piercer gave bulbgirl and myself a lift home. i was his last customer of the day and he asked me where i live and said it was on his way. we got talking, how long had he run his business, mothers day, what did his wife do, and other stuff. bizarrely enough, we found out he had met my mother at a parents evening! his kid was being taught be my own mother. "didn't her brother die recently?" john asked. his kid was quite upset that they had lost their teacher for a month.

obviously him sticking a needle through my tongue was meant to be. in a city of over a million people, how spooky is that? the rest of the night i tried to avoid speaking with a slightly closed mouth so not to show a glinting stud, and eating soup really slowly so the chink of spoon on metal in my mouth didn't give me away. it's not a big deal, but after the shock my mother got when told of my previous tongue bifurcation attempt, understandably i didn't want to her through that again. well, not just yet.

she really like the mother's day gifts, but would still give me a tongue lashing for the piercing. not a word to her if you know her please.

Herbal Medicine

it's that time of year when everybody is coughing and spluttering and talking about the bugs and colds that are doing the rounds. most people i know have had an awful cold, but i have managed to dodge it. how could i be so fortunate?

my immune system was quite low a few months back, a midge bit me and my forearm swelled quite considerably, not what you want happening during Scottish midge season. coupled with the usual body pains i get it wasn't much fun, so i went to see a herbalist. even though it didn't fix the rest of me, the unexplained sore skin was alleviated a little. also the herbal medicine treatments that i received seem to have boosted my immune system to ward off the usual bout off flu like ailments - thank goodness.

as well as being a herbalist, Erika also sings. you can hear her sing lion's shadow. i was really impressed.

Enlightenment

Bulbgirl and i went to a talk on zen buddhism on saturday, although we did turn up a little late. there was a traffic jam on the road into Glasgow, it's a bad sign when your bus driver gets out of the bus to take a look, multiple times! a lot of people were getting agitated and Bulbgirl said more than once "this is ridiculous." if there was anyone who needed a spot of zen meditation then, it was her. having rushed out of the shower after painting the hall, then managing to get paint on her new shoes as we exited the flat, she tried to rub it off with leaves as we waited for a bus. not a happy bunny really.

i on the other hand felt like the "calm little centre of the universe". once you are late and can't really do anything about it, why worry? realising that we were going to be late i phoned my brother who was coming to the zen meeting also. as it turns out he was in a car a few metres behind the bus we were on. another friend who was also coming along was a stuck on a bus a little ahead, but within sight of ours. we jumped out of the bus and got in the car, enabling us to be slightly less late than we would have been once the traffic started flowing.

getting to hillhead library approximately half an hour late we turned off mobile phones and things that may make a noise, as we snuck into the hall just as the audience finished a meditation practice. luckily we weren't there moments earlier or we'd have disturbed them.

the zen buddhist priest was from Sweden and was funnier than expected. her name was Sensei Kanja Odland, from Sweden. she was an artist and cared for the elderly, before working full time in zen since 1995. she talked about her not really planning to be a buddhist priest and how it's not for everyone. it's not really like there are courses out there on how to become a woman buddhist priest. taking time to meditate each day was the focus of the talk (even though we missed the first bit), to consciously slow down and place your awareness on something as simple as your breathing.

meditation is supposed to have beneficial effects on a body's health, although Kanja Odland said she had not taken part in any scientific trials. talking with her after i likened the effect of meditating to 'spacing out' in a flotation tank. her husband had tried it, she said but she herself had not. zazen means sitting meditation, i wonder if there is a word for floating meditation?

Unexplained Sore Skin

normally humans don't hibernate, but that's what i feel i've been doing of late, the last 4 weeks to be more specific. 4 weeks ago was when i was at a friends house, learning to play cribbage of all things, and over the course of the evening a tickly cough started. over the following few days my body started to ache a little more than normal, and a heavy cold developed. it never quite reached flu stage but was the weirdest cold i have ever had. there were definite stages of soreness, then a few days of smelling something weird, then sneezing for a few days, then losing my sense of smell, then various hot and cold temperature fluctuations.

preceding that my skin on the right side of the body was the sorest it has been in a while. a burning sensation as though a UV flashlight was left on in my pocket (before you ask, no i didn't). unexplained sore skin doesn't quite gel with the rheumatologist's diagnosis of joint hypermobility, but it seems to have passed now. i've been feeling low of late and not been online as much, for those of you wondering where i was.

Red Eyed Monster

the red eyed monster in question is Bulbgirl. red eyed not because she was angry at all but because she has infected eyes with something that has a long name she can't remember. i was in the waiting room at the hospital for over 2 hours and shen she finally did show her eyes were more yellow and orange due to the dye that 2 opthamologists squirted in there. cry me a river, cry me a rainbow more bloomin' likely!

you know when you are in trouble when the docs are interested enough to bring another colleague to exhibit you. another visit she has booked tomorrow, so hopefully that will clear things up and she will see properly again. not see the light, as her eyes are pretty light sensitive at the moment.

i was going to post pics of her peepers but for once i have refrained. this blog is becoming more of a grotty pic blog rather than light reading (although the kid in me always thinks ''ooh, cool photo opportunity!') :)