Pasta!

My legs seem to have lost their bones. They're both wobbly and weak. It's making work a challenge. Fortunately there's a bit of a lull at the moment so I'm only visiting 5 women and their babies. It's not putting me in the happiest of places. I'm still waiting for the promised remission - it can't be relapsing-remitting MS if I don't get a remission - I demand my remission as promised on my diagnosis letter.


I had my bloods done on Friday so now I'm just waiting for someone to check them and either go 'holy moly!' or find them back to normal. I'm a bit over the old Betaferon at the moment. I'm covered in red itchy welts at all the injection sites apart from the one I did manually reeeeeeeeally slowly, like an iron injection. Trouble is I can't do the jabs in my bum manually - just not dextrous enough.  I can put the needle in but can't push the plunger so they have to be auto injector so sting and will probably reward me with a big itchy red welt tomorrow - great....I'm going to be scratching my bum for the next 5 days!

I did find a 'young and groovy' rollator - the active walker . The woman in the video using it looks like she's having a lovely time but when you get down to it , it's still a rollator! Even if you get a nifty shopping basket, a padded seat that raises and lowers and optional accessories of colored cushions. Guess I'll just have to cover my crutches in diamantes and be done with it!

I'm lily-livered!

Actually I'm probably yellow livered! It seems my liver does not like betaferons. My LFTs are very elevated. Apparently a rare side effect - I like to go for the rare and unusual - rare obstetric diseases, unusual foot structure. I have to repeat the bloods and then they'll decide my fate. I must admit the idea of stopping injections is not unpleasant - unless the alternative is daily injections of the non-Betaferon Copaxone. While I wait I'm forgoing alcoholic imbibing - not that much of a sacrifice because I am more of a social drinker as the 8 bottles of wine lined up on the dresser will attest - awaiting an occasion to open.

Permitted to park here!

I went to the doctor today to touch base and to get a script for amitriptyline to try and control the restless leg syndrome. I'm a bit worried about the possible side effect of weight gain - why can't I be put on a medication with weight loss as a side effect! She is a really lovely caring doctor and she asked whether I had a mobility parking permit. I was planning on asking about one but wasn't sure I'd convince her so it was a score to have her mention it! It would have been handy  to have one prior to the appointment because parking was terrible!

She filled in the form for me no problem. I then drove to the local CCS branch who administer the permits. I handed over my form and $50 and got an orange placard in exchange! It lasts 5 years and allows me to park longer in P30 and P60s and to of course park in disabled parking spots. It was handy at the supermarket especially since my splints are making it harder to walk while I adjust to them.


My question is....am I getting more disabled or are the health professionals enabling my disability? I am a determined cuss so I will push myself to do things. I will continue to do this because that's me. If it's not convenient to take a crutch then I'll lurch around. I guess it's the mindset of "Harden the f##k up" vs "if they're available to help you, then you should use them".


At this juncture in time I'm prepared to use my crutch as much as possible because it prevents the hideous pain in my legs from trying to convince my spastic right leg to keep up with the left leg. I'll use the mobility parking permit if I would otherwise not go somewhere because it is too hard to get from where I'd have to park without it and the venue. The jury is out on the splints - my hip has felt much better today when I trialled them but I also used my crutch. 


I can see how people get stuck in wheelchairs once they start using them. The schizophrenic nature of MS really doesn't make decision making easy! It's so confusing! Will I never be able to do any proper walking or running or one day will I wake up myself again but with a mobility permit? That's the sucky part - everyone is different  so some people relapse and then remit(?) back to their old selves with just occasional flareups, others don't get better but don't get worse apart from the flare ups and others head down hill and never get a break! Sucks, sucks, sucks!

Got my new bionic legs!

Yuck! I got fitted for AFOs (Ankle-Foot-Orthosis or Anti-Fashion-Object) today. FOR BOTH LEGS! Horrors! They are white plastic with velcro and you have to wear socks with them! It's heading to Summer in humid Auckland! I really wanted to cry when he brought them in. I am really starting to think the health system is taking 'run yourself ugly' to the extreme 'walk yourself ugly'. They do help me walk so that is a gain but they are really not compatible with work!


My working day involves driving to clients' houses - try that with a bit of plastic strapped to your leg and foot! Then visiting them in their homes. A large percentage of New Zealanders have shoe-free homes so the whole contraption has to be removed since the forms fit under inner soles where possible. It doesn't instill confidence in clients that I won't drop their baby when I need plastic to hold up my legs! 


I know all these products are designed to help make our lives easier but it is really hard to adjust to them.  I've done OK with the crutch, although I'd prefer a lilac one with diamantes. I've coped with the red blotches and bruises from injection irritation on my left leg - for some reason that's the only spot that causes problems! I sacked the physio because she was wasting my time and not giving me any thing in return. I sacked the OT when she threatened to come and assess my house for future possible problems - I'll sort them when they occur! I'm sick to death of people thinking I can just move from a townhouse to a single level dwelling just like that! For a start this is Grammar zone! Single level dwellings around here do not come cheap! 


There are people out there who are trying to make more user-friendly AFOs. The best I've seen are those by Allard which are light, and cool looking - the toe-off looks really cool -the woman is running in it!


Yesterday was a downer day. I had been to the Armaghedon convention and done 30 minutes on the wind trainer plus taken the dog for a wee walk the day prior. It was also the day I had my betaferon. I try to do as much as possible on good days (aka days that I'll be taking meds in the evening). Yesterday Simon was running a double marathon - one tacked on before the Auckland Marathon. In the good ol' days I'd have supported him but the optic neuritis means I can't drive at night so he had a buddy do it. I planned on making my way to downtown and cheering. When I woke up I felt like I'd been run over by a steamroller! Then I opened the curtains and saw brilliant sunshine - there is no way I can stand more than 10 minutes in the sun or I get a super exacerbation of symptoms. So once again MS robbed me of another facet of my life! The funny thing was when Simon got home we had the exact same gait! At least I have an easy explanation of my symptoms for my friends who do these crazy distances - I feel just like you do after a marathon/ultra!

Now let me get this right...

in order for Betaferon to help me have fewer relapses I have to endure a few months of my symptoms being exacerbated. So to feel better first I must feel worse....it sounds like a Buddhist saying. "Before zen one must first feel crap". There is a fabled t-shirt which reads "No, I'm not drunk, I have MS. What's your excuse!". Well I need that t-shirt! Today I can't walk straight or talk straight! I also have a red raised area on my leg thigh from the jab 6 days ago. It's not itchy, it's just there. And the optic neuritis is worsened so I can't see straight.


Now here's what I reckon....Betaferon doesn't actually make you any better. It's just for the first 3 month's supply they put in a mild paralytic so you don't function properly. Then after 3 months they just have sterile water and NaCl. So then you feel better and think the interferons are working but really it's just you're not paralyzed any more!


It's interesting observing different people's attitudes to the disclosure of MS. My mother asked me if anyone (meaning the neighbors I think) had said anything about me using a forearm crutch. I told her no but if they did I'd just tell them I had MS. Her newer was "You don't have to tell anyone.". Fair enough but what's the other option? A) lie - "I've got a spanned ankle" or B) "None of your fecken business!". Surely the truth is the best option! Today I had to tell a bank teller I had MS because she asked what I'd done to my leg. I didn't mind - she was the embarrassed one not me.


Today I also confronted two teenyboppers coming out of the disabled toilet. I was quite nice "You know that's the disabled loo, eh?". They looked chagrinned (result!). BUT I then had to use the loo even though I didn't need it or it would have looked a bit petty!

Those motorized scooters are starting to look a lot less unattractive! There is even one based on a Harley! now that's what I'm talking about! And it has a top speed of 16kph! I could throw on a leather jacket, some Oakleys....born to be wild!

Betaferon is a pain in the bum!

I've had a week of Betaferon jabs and I can report that jabs in the thigh or stomach = no problemo but jabs in the butt are a bit owey!  I had to put my long-suffering husband in charge of butt jabs because it's just too hard at this early stage of things! I iced appropriately - I may have frost bite! I got everything ready and handed him the auto injector and then foolishly said "Don't press too hard" so of course the weight of the auto injector pulled the needle down a little so it stung! Tonight was better, a bit more pressure and a lot of icing! It seemed so easy when I was giving women jabs in their bums in the line of duty!


Also in the world of MS, I've been out to Rehab+ to see the physio twice. It was all a lot of talk about what to do and not a lot of doing! I have never been a real physio fan, only really trusting one who is a magician! But I thought she might do something to help my spastic legs or my excruciating hip but alas no! Part of the problem is I have relatively good leg strength even though it is drastically reduced - it's all relative I guess so compared to a stroke victim I'm a super being. Still I kind of resent driving out westish to spend an hour talking about how it's silly to do weight training for my upper body - what's my aim? Duh! to build upper body strength, to tone some cooperative muscles and because I enjoy it. She feels Tai chi or yoga would be more suitable! 


When you get a dire diagnosis, everyone tells you it's important to have a positive attitude but begorra it's hard to when all the allied health professionals have such a dismal outlook! Tomorrow is OT assessment where I have to convince yet another person that "no, selling my house with stairs is totally not going to happen, particularly in the current economic environment" (always wanted to say that!). I have managed to get the stair rails re-attached so that's a start! We have a disabled shower downstairs from the previous occupant so that might earn a gold star! Of course I don't like it and prefer the over the bath one upstairs which earned me a dire prediction of broken hips from the physio! I was also advised to come downstairs in the morning and not go up again until bedtime! I would prefer to simply stay upstairs and be waited on but neither is likely to happen!

I prick myself (like I touch myself but less fun)

Today was my first dose of Betaferon. I presented myself at Neuro Central for a quick start guide to giving myself my interferons. I got a demo, then I tried on the demo and then I was up!


In order to give yourself Betaferon you have to do a little work. First you have to attach the syringe of saline to the bottle of interferons. Not too hard if you remember to take the cap off the syringe. Then you shake it baby - but not too hard, suck it back into the syringe, detach the empty vial and you're nearly ready for business. In fact if you are a brave person you are ready. Now would be the time that you would 'peench an eench' and put in the jab. But if it had been me I'd still be there finger poised over the plunger, too chicken to push it.

Fortunately for chickens there is a lovely auto injector! You put the syringe in, close it up, put it on the spot you want, push the 'play' button and there's no turning back! It slowishly injects you and when you're all done "Ping" a little alarm goes off! It was much less traumatic than I was expecting! I have a supplied ice pack to put on the spot and I bought one as well so I'm all set. 

Once you've done the deed you then open her up and remove the syringe. So you're left with a sharp little needles contaminated with interferons and human. So it must be disposed off. The good old way is to put them in a sharps bin. These will take the whole kit n caboodle which is fine at home. Once it's filled up you give it to the biohazard people. But what if you're gadding off around the world....or spending 3 weeks in the States. You can't as easily heft around a sharps bin. I guess you could put it in your check-in luggage but it's a nuisance really.  Never fear! There is a fabulous little device to stop the hassle of carrying a big yellow bin around. It's called a needle clipper. 

The needle clipper does just that - you poke the needle in a funnel on the side, press a button and the needle is snipped off and you are left with an innocent syringe who wouldn't hurt a fly! These hold 200 needles so last way longer than a sharps bin, can be easily transported on a plane and are pretty easy to use.

So those are the fun toys I got! But wait there's more! There's a stress ball to squeeze, a diary; to mark which of the sites I used so I can rotate around 36 sites before returning to the first - theoretically more than 2 months later; and a mat to use when preparing my syringe - reminiscent of Club in Co in the 70's.

When you travel on a plane you have to carry all your medication with you in your carry-on. Well my medication is a carry-on in it's own right! For a three week trip to California I need to take 11 boxes containing vial, syringe and connector, the auto injector, the snipper and an ice pack. Sounds manageable doesn't it. To make life easy the nice Bayer people even give you a bag to carry it in. So we're talking a toilet bag sized bag you're thinking.....no think more back pack!

Yep! She's a good size! Basically I take that on board and that's my hand luggage now the US only allow one bag! Otherwise it takes up all the space in my carry-on thus preventing me from carrying out my clever plan to fit 3 weeks worth of clothing pretty much in my carry on leaving a whole suitcase for bring stuff back in. - More on that later!

Prepare for change of course

In New Zealand midwives are kept in order by the New Zealand Midwifery Council. They make sure we are all good little souls who keep up their skills and don't do anything naughty. If you are a nurse you only need to keep up your skills in your chosen area e.g. orthopedics but there is nothing stopping you becoming a paeds nurse if you can get a job or you can carry on working in your happy little niche.  But midwives are required to work across the spectrum - antenatal, intrapartum and postnatal, up skill with courses to a certain number of points, do 3 yearly intensive workshops, annual CPR for adults and neonates and be reviewed either annually or biannually depending on where they work.


Due to the kind effects of MS I am easily fatigued (try doing a 12 hour shift or a 16 hour labour!) and so run the risk of not making good clinical decisions, I lurch around which wouldn't inspire much faith in someone in labour and I can't handle heat - delivery rooms often sit around 26 degrees.  So I can only practice in certain areas of midwifery. Simple then to give me a practicing certificate limiting me to antenatal and postnatal you would think but no!  If you can't do all areas you can't be a midwife. Apparently if you don't do deliveries regularly you will forget how to help deliver a baby should one present itself in front of you while out shopping! Forget that all you do is guide and encourage most of the time and that would certainly be the case in the centre of Sylvia Park (large shopping centre).  I contacted the College of Midwives and they said yes of course we can help you. All you have to do is form a plan to work in all three areas over the next 3 years.  Excuse me but that differs from what I currently do how? Oh and tell your colleagues so they don't think you're drunk or drugged!

So it looks like after 15 years I will be leaving the field of midwifery and trying to find another career path that accepts women who on occasion do Quasimodo impersonations and appreciate a nice lie down on occasion. Politics maybe? There's a research project manager position advertised at Auckland Hospital - part-time - so I may look into that despite that fact I have no real research background - you can but try.

Still waiting to hear if my application for DMDs has been approved. The approval timeline is supposed to be 10 working days. I may have to be a squeaky wheel again. I hate that and resent being put in a position to do it but I am my own advocate so squeak squeak squeak

I had a title but now I've forgotten it!

Having read copious amounts of information on MS I've found that most people seem to bargain. People who are on their feet for a lot of the day say "I don't mind cognitive changes but please don't let my legs get weak". Authors and teachers often say "I can cope with being in a wheelchair but please don't give me cognitive changes."  In my experience no one listens to your bargaining!

I certainly don't have the memory I used to have. I can't remember a simple list of numbers read on one website long enough to input them in another (OK, I'll be honest - I can't remember the solution to puzzles read in walk throughs long enough to use them in games.) This doesn't impact on my work so that's fine. What does is the 'tip of my tongue' syndrome where the word you need just won't come and then you lose track of where you were going with the conversation. Case in point: lecturing to a bunch of baby doctors. I was talking about Maori birthing practices pre-European and just completely lost the word I needed. I fudged around it but was thrown for the rest of the lecture concerned it would happen again. So that part of cognitive changes impacts on my work. When I sit down to write I pretty much have to read everything I've written previously to remind me where I'm going.  My iPhone is my constant companion and every task I have to do goes into immediately I decide it needs doing.  I used to joke that it was my brain but now it pretty much is.

The physical changes have certainly been a kick in the pants. After 100 metres I become a member of The Ministry of Silly Walks. My left leg seems to want to climb a mountain while the right is tromping through mud. Throw in the attractive side lurch and it is worthy of a grant for development.  Using a forearm or Canadian (why?) crutch is helpful, clinging to a shopping trolley while assisting with number 3 son's paper delivery helps, using a horrible walking stick also helps. Fortunately in my work it is usually less than 100 metres from my car to a client's front door so they are not subjected to John Cleese in drag.

The real kicker is in order for me to practice as a midwife I need to be able to practice in all areas. There is no way I can safely attend a delivery where I might be there for 12 hours because i'd be useless for making safe clinical judgements. The rules are made by the Midwifery Council of NZ so I thought I'd check out their website to see what allowances they make for their disabled members. The only thing my search turned up was.......how to dob in a disabled midwife if you think she's not able to work properly/safely!  I'm going to have a powwow with the College of Midwives who is loosely like a union as well as having other roles but I think I'm on the outers.

The two big-ups I've had are the kneeling bus bent down for me and if there's a queue in the loos I never get glares when I jump the queue and lurch into the disabled loo. You've gotta look for the positives!

I flew down to and back from Wellington yesterday and I feel like I've run a marathon today! Coped fine during the expedition but paid for it today! But at least I have had the opportunity in the past to do a few marathons so I have credibility when I say it!

Still waiting to hear back on the DMDs (Disease modifying drugs!) - can't believe I'm keen to start injecting stuff into myself! (I would never have made a good drug addict!). Apparently interferons slow down the progression of cognitive changes so I'd be so up for them for that reason alone.

Still can't remember what my brilliant title was! I can remember when I was erudite and quick, seems like only yesterday.

But I can't see anything!

The Rugby World Cup 2011 has launched with a plethora of fireworks and whoops. The family all climbed up Mt Hobson to get a panoramic view of the locations with 1000 others. 


This is when it hits home what having a chronic degenerative disease (that doesn't sound fun!) means to me. I couldn't go up to watch the fireworks because I'd not have made it home. I had to stay home and watch between the trees so I saw flashes of light and any high fireworks.  The Wynyard Quarter is apparently fantastic. I'd like to have a wander around it. Parking around there is horrific especially now so what the old me would do is park further away and walk to it - not going to happen now! I can probably hobble round it though.


I had to pass up tickets to the Home Show (I know, not exactly gold plated entertainment) because it suddenly struck me that I'd struggle with it. Of course, if I had that lime green wheelchair then it'd be a different story! ;-)


I took Millie for a walk pre fireworks  - just up the drive and down the road a wee bit - a meander really. I decided to try out the floral walking stick I got when my hip was dodgy. It helped a bit but something amusing occurred. I was trying to adjust it (I think Simon has been playing with it) and thought I'd broken it because the bottom section pulled out. Then I realized it is a folding stick! I had been peeved cause I couldn't find one and Duh! I had one. Don't know if I would want to use it in daylight hours - I think it's more of a vampire aide de marchant.


I'm being very well adjusted to my diagnosis and coping with the sympathetic looks and hugs. Far better than everyone saying 'Yeah, so what!'. It's a work in progress deciding who to share with. Many people have advice - some of it a bit suspect - like the hairdresser who told me her boss' wife had MS but she became a vegetarian and now she's cured. Everyone knows someone who has MS and they're fine but from reading forums etc I'm getting a sense that not only is MS a hidden disability but when anyone is badly effected they don't hang out with their friends so they would seem fine. It's a bit like all the advice you get when you're pregnant. So I'm treating it the same way - smile, thank, file away or discard.


My next self improvement exercise is totally overcome the desire to wound, maim or eviscerate and wounded runner who moans about not being able to run for a week because of any injury. Currently I manage to bite my tongue and keep my hands off them but really on a sympathy scale they're getting a big fat zero (maybe slightly higher if I like them). I in turn whenI'm feeling sorry for myself think of Ian Winson, who lost his legs in the Onehunga Gas Main explosion. He was a driven man who was the force behind the Legend. I'm happy he at least got to run it once but I'm sorry he isn't running this year not because he's done it and once was enough but because he lost the ability to. Though maybe if he got a cool lime green wheelchair....!


So I'm coping with my bowl of lemons but could use some sugar for the lemonade.

Congratulations...it's MS

The absolutely wonderful Fiona, MS nurse extraordinaire, came through and I got an appointment with neurology. Even better it was with the neurologist I wanted (is it anal to have a preferred neurologist?).


The appointment was today and after reviewing my history the Doc said yes it was MS. So I am not neurotic despite what a number of physicians have thought in the past! The fact that I have developed at lisp in my 40s is not regression to childhood, when I think food is going down the wrong way - it is, I haven't had to give up marathons because I'm old - my legs are dodgy,I didn't fall down the stairs three times because I'm clumsy. It's all because I have MS!


So now I'm in the system and we're begging Pharmac to let me have interferons - at a cost of $1322.89 for a months supply! Then if they say yes I have to man up and give myself a sub cut jab every second day! I based my choose of interferon on shortest needle (you can have a weekly dose but the needle is a mean long intramuscular beastie), coolest auto injector (it rings like a cash register when you're done!) and lesser number of jabs a week (every second day vs daily). It apparently makes you feel like the after effects of a wine binge so it'll be bedtime jabs for me. Plus I get to mix it! Love chemistry!

I had to do a 500m walk assessment which resulted in a referral to physio and orthopedics for a foot brace! Apparently they are no longer ala Forrest Gump and more discrete - not sure how discrete a foot brace can be! When i googled them they looked anything but!


There is also the issue of stairs - I can't leave the house without ascending stairs. So it may mean a move in the future. The irony of buying a house with stairs because that was what Danae wanted and now she's left home has not been lost on me.  Hopefully Simon reattaching the stair rails may be a short term solution.

So now it's really a waiting game! This is an individualized disease so no one can tell you what will happen. My only proviso is if I have to have a wheelchair I want a really cool one with cool wheels in a cool color! You can get attachments things so you row rather than push the wheels. Apparently there is a huge wheelchair tennis community - now if I could just play tennis it would be great! 


I refuse point blank to ever use a walker. A) they are aesthetically not pleasing, B) they make you hunch over and C) they are not me.


I've been using my crutch and that's been working well - better than the very attractive floral walking stick I also have. It means I can still get around Sylvia Park which is imperative.


So here I am, diagnosed, labelled, disabled. Now can I get a parking permit!

Owie

Today I must head off to vampire central and I am afraid, very afraid!

I had some blood taken last week for my drug trial. I only have one good vein - it's in my left arm and I am very protective of it. Well, the plebotomist must have nicked a nerve because it's been a week of pain radiating from my elbow up the back of my arm and occasionally down it. Ibuprofen has no effect and it is not pleasant!

It wouldn't be quite so bad if I didn't need a follow up take today because my liver functions are elevated. My vein is in hiding! I've put it off for 2 days but can't any more.  Definitely not happy! At least the study nurse says I don't need any blood tests after my next visit on the 30th so that's a relief!

I guess I'll have to bite the bullet! Hope it's only one tube and no vaccutainer because I think her wriggling the vaccutainer around is what did the damage.  Of course it may be due to the hosepipe they used to give me my iv steroids but it is not as likely. So off I go into the brink....wish me luck!

Heat, incompetence and dodgy LFTs

I flew to Wellington  yesterday, as you do. Only an idiot would catch a 12:30 flight down and book a 6:30 return flight.  Only a real idiot would say "No problem" when Air NZ cancel the return flight and ask is the 6pm flight OK? The flight down was great - cellphone use allowed on board! Could text but couldn't use foursquare because it had no idea where i was! 


The weather in Welly was divine. I worked on my short story at the airport (free WiFi rules) and then walked to the bus stop to catch a bus (as you do) to the Hospital. It's an open bus stop - no shelter. I thought "Glad it's not raining!" - if it had been I'd probably have taken the Airporter bus and then taken a bus from the railway station to the hospital. The bus was supposed to appear about 3:15 and I was there at 3:05. Tons of buses went past in the opposite direction and loads of school buses went past but no sign of no 11. The sun was beating down and after half an hour I noticed I was having double vision - crap the heat was making my optic neuritis flare! Finally after waiting 45 minutes a no 11 finally bowls up! Great I can still make it in time for my lecture (important when you're the one giving it!) Then at the next stop the drivers changed! And the new driver faffed around for ages! I did make it to the hospital just in time but not a picture of calm and serenity!


While I waited at the airport for my return flight I picked up an email from the angel MS nurse. And all my misgivings about the Eye clinic were confirmed. I'm wondering how many people who may have MS are not getting seen by a neurologist because Eye clinic is not referring them. Optic neuritis is often the first presenter with MS so the Eye clinic stands to see a lot of them. Here's the email:

Hi Nic,

I’ve chased this up with the secretary at the Eye clinic. She is going to follow-up with Dr X as there is no evidence of a referral being made although that doesn’t mean its not there or hasn’t been done!!………..but a good thing you contacted me.

I will follow-up with her early next week (Dr X is only in once a week apparently) and let you know where things stand

Kind Regards

Angel Nurse

I am so peeved with them! Incidentally Dr X is not one of the doctors I was seen by and isn't head of the team I was an inpatient under.


And just to make my life extra sweet, I got a call from the research nurse on the study I'm part of to say my Liver Function Tests (LFTs) are elevated so they want me to have another set of blood tests done - and it's always so urgent -TODAY! Like I have nothing else going on! I wouldn't mind but I've have a horrible neuralgia in my arm since I had the last lot done and my superstitious mind says it was due to either scarring from the dirty great cannula I had in for the IV steroids or she did a wonky job doing the blood collect - she wiggled the vaccutainer something chronic! Either way I'm not that keen to repeat the experience. I only have one vein suitable for blood collects, IVs, etc and I am not keen on having it ruined! All the others run from needles - they look fine and then skitter away from the needle. It's the sensible Plebotomist who listens when I tell them they have to take blood from my left arm.

Those cracks are mighty big!!!

Whenever I interact with our beloved healthcare system I worry about falling through the cracks. I work in it and I know what happens at the end of clinics - the consultant has a big pile of notes to dictate letters for and depending on the consultant/Reg they can be done instantly or sit around for a week with a label on them saying 'X's dictation pile'.

My experience in the Eye Clinic and on the Eye ward reinforced my paranoia! So I've been concerned about my referral to neuro.  I got no discharge letter, which is a handy dandy heads up! I thought I'd give them a week and then, well then I didn't really know what I'd do!


So a week rolled by and my self imposed kickass time limit ran out! By googling a bit I found two things - an Ask the doc column on the Neurology Trust website and an email address for the MS nurses at Auckland. So I flicked off an email to both, not expecting much.  Basically I asked the nurses how long should I expect to wait for a referral.


Well this morning this was in my box (Names changed to protect the great!) - it shows paranoia sometimes isn't paranoia!

Hi Nic,

I'm pleased you got in contact -X, who you emailed no longer works here but the email was fwded on to me which is great.

I've not found your discharge summary on the system but will call Dr Y or Z's team at Greenlane eye clinic and chase up your neurology referral. Ideally it would be best to pop you into an appointment asap so will try and arrange for you.

Will let you know how I get on. How is your optic neuritis now after the steroids?

Kind Regards

Super Angel

So now I feel a little less blind (apart from the neuritis, which makes me slightly vision impaired!). So now I await her reply. 

I've also sent a request to Clinical records for my notes while under the care of Eye Clinic. May or may not be interesting reading!

It just appalls me the way people can just fall through the cracks! Sometimes it works to your advantage - when I had a scratched cornea I left clinic after waiting 2 hours for my probably last follow up appointment because that is just too long and never got a new appointment - probably because I'd checked in so technically attended.

So lets see how the wheels move now.

Chinese whispers

I'm taking part in a drug trial currently. It's looking at whether the addition of some compound or other to Detrusitol will reduce the side effect of dry mouth. I've had to take Detrusitol for 6 weeks to see if I get the dry mouth - I do, oh boy do I! When I first got the symptoms of optic neuritis I wondered if it was a side effect of the Detrusitol - if it dries your mouth out, surely it might dry your eyes out too.  Seems it wasn't to blame.

Today I went in to be randomized for the next step - blind testing where you have 4 weeks on Detrusitol, 4 weeks on placebo and 4 weeks on the new drug. When I was hospitalized I contacted them to let them know so today was also a bit of a follow up to that. I'm now getting used to the looks on people's faces when you say I have optic neuritis and lesions on my MRI. I often want to slap them because you know they're thinking "MS!" but of course don't want to say it. For goodness sake I'm a health professional with an iPhone!

They asked if I'd brought in my discharge letter - I laughed! What discharge letter! It was 'goodbye and thanks for all the fish!". All I could do was relay that when I asked about the MRI I was a told there were plaques. "Plaques are lesions, right?" I had to tell the I had no idea when I'd have an appointment with the neurology team.  Now things could have ground to a halt there but no! The doc rings radiology and asks what my MRI showed - multiple lesions.  He then tried to get hold of a neurologist but no one was answering his calls. So he gave me a diagnosis of probable MS but of course can't confirm and we decided there is no reason to not continue the trial since it won't exacerbate 'my MS' - hits home when it's described as something belonging to you!

Not my MRI, just an example!

He also thinks it'll probably be 10-12 weeks before I get an appointment so the study will be done and dusted by then anyway.  Of course if I go private then I'll put a spanner in the works but we'll see. So I've got a differential diagnosis based on Chinese whispers! Oh how I love the health system! I'm really over it! Just another area that is on my list to fix when I rule the world.

Not a good day

I'm not feeling 'good' today. I feel as though I'm in a vat of congealed fat. It's hard to move. I took the dog for a walk and I was thinking about the tables they use to determine how bad someone's MS is (I'm reading a lot!) and they talk about how far you can walk without resting or using a support etc. I got to the turn in the driveway and thought 'I want to stop here' so that would be 200m but I didn't. In a marathon you think 'I want to stop here' frequently but you tell yourself to stop whining and carry on. And so I carried on. So I can walk for a reasonable distance without support or resting because my head is trained to make me do so. It'd be like someone lost in a desert - you make yourself go on. If someone said "How far can you walk?" my answer would be "How far do I have to walk?". So how accurate are the tables? Would a more accurate assessment be "When do you first feel the need to stop walking?"

I am exhausted. I had to have a nap between dropping Toby at school and going to work. I fell after my last visit - foot drop. The idea of going down the stairs to dinner was like asking me to walk to the city centre. It's the worst fatigue I've ever had. It's probably the insomnia finally impacting! Only half a prednisone tablet left to take tomorrow and then I'm steroid free! For me the side effects have outweighed the benefits. I still have blurred vision and weakness after 3 weeks of treatment and I'm grumpy, sleep deprived and moon faced to boot.  I think I'd only ever take a repeat dose if it was the choice between steroids and an MRI. An MRI is pretty close to the top of things I never want to do again without medicinal aid. I'm pretty sure I will be faced with a repeat in the not too distant future.  I may try going private to avoid the technician who trusses you up like a hostage victim. For goodness sakes guy! breathing is not optional!

I'm awaiting a referral but have no indication of when it might appear. The collective conscious have all decided that if I don't hear by Friday I am to go to my GP and get a private referral from her.  It would be nice if things just went they way they are supposed to.  I once described depression to a woman as the statement  'I can't be bothered', how I feel at the moment is similar but I had a much better term until my brain went squelch and all higher levels of functioning stopped. It's more I'm powerless to be bothered. I have way too many things to be doing to be feeling like this!

Insomnia sucks!

Insomnia does give you more hours in the day, this is true. Unfortunately those hours are grumpy. It's 00:21 and I'll wide awake after only 4-5 hours a night for the last fortnight or so. Brilliant minds may flourish on this little sleep but minds like mine tend to head more towards psychotic bitch from hell.

The world seems to be populated with annoying stupid people. They drive stupidly, they stand around stupidly, they get in my way stupidly. I have only a modicum of patience and it is used up by the women I visit so the world is at my mercy.

I'm planning a hostile takeover of an event and really got peeved with someone who was trying to rally support for it. It wasn't the actual act of trying to resurrect it, I agree entirely it needs an overhaul. It was the way her plea was  worded and laid out. To be taken seriously you need to state your case in a direct and eloquent manner. Perhaps and maybe have no place. And poor grammar is not an option. Really, the sooner people give in and let me rule the world, the sooner there will be peace.

The problem with insomnia is it really mucks with the brain. I've been trying to write a proposal, a short story and edit a newsletter and words just keep failing me. I have not let that stand in my way and have been inventing new words for use when the correct word doesn't pop to the front of my brain. They are simply placeholders but some of them have been really good potential words - again, once I take over the world.....

They say older people need less sleep. I'm wondering if it's just a line that's been fed to them. Perhaps the reason so many older adults are so grumpy is they are chronically overtired. Maybe old people need more sleep - like babies. It would fill some of the hours and give them an excuse to avoid basket weaving classes.  They could probably do some yoga because if the room was warm enough they could have a nap.

The funny thing is so many of my clients are complaining, as many new parents do, about the fact that they are hard pressed to get 3 hours straight sleep. BUT between 10 and 7 they may get 7 hours! I get 4 and have to function as an adult and not moan. I can sympathise in my head but on this little sleep, it's not a sympathetic voice in my head!

It's times like this that the wonders of pharmacology do sound nice. An imovane now and I could be off in lala land.  Really clever medication! They make you do what your body/brain is refusing to do. One minute your brain is contemplating Archimedes' theorem and the impact on how much ice cream to soda you can put in a spider and the next zzzzzzzzzzz. So clever and much safer than laudanum!

Guess I might as well head to bed, at least it's warm and I can play bejewelled on my iphone!

My history

Here is a brief rundown of the past events that are now setting off alarms in my poor head.

In the mid 90's while training as a midwife I had an episode that lasted two weeks or so where I developed very slurred speech and had difficulty moving my tongue. It was investigated by physical exam and I was diagnosed with a post viral syndrome and sent on my way. Since then I frequently felt less mentally adept and sometimes quite foggy.

I started to suffer from an overactive bladder - the key in the door syndrome - when you gotta go you gotta go.  But after 5 children the pelvic floor probably wasn't the best. I recently addressed this through medication. Medication I initially suspected caused the blurred vision - it dries your mouth out so maybe it dries your eyes too.

I started to get quite achy about 7 years ago and worried that I had arthritis. A visit to a specialist left me with the diagnosis of Fibromyalgia which I have basically treated by ignoring it! I was achy, had brain fog and my hands felt tight most of the time and I am always tired.

When I was pregnant I developed Cholestasis of pregnancy and had many blood tests. One thing that showed up was the presence of Epstein Barr Virus antibodies.  I had glandular fever as a pre-teen following on from mumps and the mysterious post-viral syndrome so this is not surprising but many people with MS have higher than normal levels of the EBV antibodies.

Six years ago we moved to a new house with stairs. I slid on the stairs 3 times in quick succession - damaging my tailbone quite significantly. It became a major mission to descend the stairs and I still have to really concentrate.  Not helped by the removal of the stair rails for DIY.

I have often choked on my saliva and taken food down the wrong way. It's a transient thing but worried me enough to get a referral. Of course the day of the investigation it showed little more than a slowing/pouching at the back of my throat but nothing going into my lungs - I could have told them that without the machine! So I continue to choke and sometimes spaghetti dangles into my lungs and I cough madly and sometimes a small amount of food feels like (and I'm convinced it does) gets into the top of my lower respiratory tract and I choke and cough and feel like my lungs are seared.

I have irritable bowel syndrome though it's not been too bad for a few years - could be learned management!

I knew fibromyalgia responded well to exercise so I pushed myself to run.  I was enjoying it and getting quite a bit of zip when one day I managed to slip off the kerb (bit like stairs!). My foot felt like a knife had gone through it. This sent me off on a whole nother tangent - (ACC blaming my split perineal tendon on degeneration rather than accident because I'm so old! No payment for surgery so it's been two years and it is finally coming right due perhaps to the Steroids).

So running was pretty much out the door. But I could still walk my dog......until about 5 weeks ago when I suddenly struggled to make it up the driveway and could only hobble 300m down the road. It was a combination of weakness and pain in my right hip which has been part of my life since I was a teen.

The off-shoot of no exercise was weight gain! So I started a weights program which has helped a little but my lifting weights have dropped significantly. Where I could do 15kg per arm I'm now struggling with 5kg! I'm also too damned tired!

There have been other things which I was really not aware of until I began reading a book today and thought "Holy shit! That's me!". I 'see' sounds - I get bright flashes with loud or sharp noises.  When Simon gesticulates with his fork I feel like it is grabbing my eyes and pulling them. I can get vertigo on very small heights (anything more than 3 steps up a ladder is no go! I splash cups of tea and coffee all over the place.  I love hot baths but my legs get really tired trying to keep me from slipping under the water! After 15 minutes all the fun has gone out of it. It is also pretty hard to keep the book from falling in the bath (Can't have a bath without a book!) as my hands feel swollen and start to ache.

I can't keep my legs and arms still for more than 15 minutes - try 45 minutes in an MRI machine without going insane - I cried and would have screamed but I'm too socially constrained.

So I have a whole hodge podge of symptoms which have been investigated in isolation and never really linked.

Maybe a neurologist will pull it all together but based on my past experience I'm really not holding my breath. If I wasn't such a sceptic I'd really have little faith in medicine! I'll tell you one thing if I find out I have MS and I'd have had a better prognosis if it had been investigated more fully at the 3 crucial presentation points I will be up that postal tower pretty damn quick!

Why I changed the direction of my blog.

On the 10th of July 2011 I woke up and couldn't see properly out of my left eye.  The vision was really blurry and dark.  Within an hour it came right. The next day it happened again and lasted a bit longer.  On the Monday it lasted all day but the blurry area became narrower as the day progressed. On the Tuesday I made an appointment with my optometrist because it just wasn't right.

The optometrist carried out a battery of tests including peripheral vision testing, colour recognition and the usual acuity tests. Based on the results she told me to front up at the Eye clinic at Greenlane Clinical centre the next day.

The clinic opens at 7:30 but I couldn't make it until 8:30 so faced a bit of a wait. That was fine, I had a book. After about 3/4 hour a nurse called my name and took me off for triage. It then transpired that the Optometrist had written the date on her referral as 8/7/11 so they thought I wasn't particularly compliant. After explaining that 'no, I actually saw her at 4:30 yesterday' things changed.  I was placed in the acute waiting room - a dimly lit area. 

After a short wait I was called by a Reg who repeated most of what the Optometrist had done but did mention that optic neuritis which was what I had can be associated with MS!  Normally this wouldn't be a biggie but my past clinical picture made alarms go off in my head (I'll go over this in my next post). 

A HS came in to apparently take my history as I was headed for the Eye Ward for possible steroids.  Near the end of this history taking another Reg came in to explain a bit more. She skirted around MS but I told her the previous Reg had mentioned it (I'd also googled on my iphone in the interim!). She then explained that Steroids can speed up the healing of my eye - it would also heal without them - and may delay onset of MS in people developing it by 2 years. So did I want to proceed with the steroids - that would be a yes.  The next suggestion was an MRI. I wanted as much information as possible  so agreed it would be a good idea.

So I was admitted to the ward on the Wednesday for IV Steroids - only to discover it was 3 days worth! Oh well a change is as good as a holiday so I settled in.  The steroids were foul. I had nausea, a metallic taste in my mouth, insomnia and general malaise.

On the Friday my MRI was booked. This was one of the most horrible experiences in my life. It was not the small space that caused me distress, it was the being totally immobilised and bound across my chest so tight it caused paroxymal coughing which naturally made imaging difficult. I had to keep my eyes closed but my eyes tend to dart about even when closed so again I was not popular. The whole torture took 3/4 hour and if I never have another one it will be too soon.

I returned to the ward for my final dose of steroids and my discharge. I was given an appointment 13 days later to come back.  When I said it seemed along time to wait to find out if I had MS, the nurse said there was no mention of it in my notes - you'd have thought that would have raised a flag but no. I was sent home on 16 days of Prednisone - 60mg for 14 days and 10 mgs for 2 days. 

The oral steroids were only slightly better than the iv. I've been not particularly hungry (a plus), grumpy, barely sleeping, swollen and foggy. It does seem to have helped with muscular pain but my eye stills feels like there is a smear on my glasses - but I'm not wearing any.

So today, 13 days later I returned to the Eye clinic. The wait wasn't too bad as I had an appointment. I was seen by another Reg and took this as perhaps a good sign because surely if there was anything bad on the MRI the boss would be seeing me. She did all the tests and then said she was going to discuss it with the Consultant. There was a long wait and then the consultant came in.

She explained that things seemed to be improving - I see dark orange rather than light orange for red out of my right eye now. My vision had supposedly improved but that is probably only due to the fact I had my contacts in rather than my not-good glasses.

"So, do you have any questions?"

"Ah, yes! What did the MRI show?"

"Well, it showed inflamation of the optic nerve and there were a few plaques.  It means you are likely to present again with optic neuritis"

"By plaques do you mean lesions?"

"Yes but you haven't got any of the other signs of MS"

"You mean like weakness and foot drop and episodes of slurred speech?"

"Ah yes! Do you have those?"

"Yes, I had slurred speech years ago and I had weakness and foot drop prior to the neuritis" (this had all been told to previous Regs and HS)

"Oh! Well we had better refer you to a neurologist. But we won't need to see you again"

And that was it! Out into the cold with no idea when I'd have an appointment or what to do if I was concerned!

The documentation must be terrible! I can see how people slip through the cracks. I could have presumed the MRI showed nothing and gone my merry way.

So I am now blogging to document my journey - be it to the world of MS or status quo.