Tuesday, August 28, 2012

It never rains but it pours

MS has brought out my inner ranter. I may become Disgruntled of Auckland in the letters to the Editor soon. It been an interesting couple of weeks. The bathroom renovations continue on. The upstairs one has finally been finished, sort of. This was the one with the accessible shower. See below!

The lip is nearly 60mm so a bit of a drag. The doors are now on - regular size put in not a wider one. Ai caramba! So now the downstairs one is supposedly going to be lower and wider but I think it'll just be a step down into it. Apparently writing things down is not part of the spec.

Despite the dramas it does look lovely. It's nice to be able to plug the electric toothbrush in and the bath is a thing of beauty. Now we just have to survive the renovation of the bathroom and laundry. If our new neighbours have anything to do with it I may not!

Our tradesmen all come after 9 apart from 2 occasions to reduce inconvenience on a shared driveway. On both occasions the neighbour had a hissy fit about being blocked in. She ignored the tradesmen who had parked there to come and ask me not to park in her driveway because she's always running late delivered very much in the tone of voice a teenage girl would be proud of. I don't park in her driveway so readily agreed. So where do I park? I park up our long driveway ( the one I struggle to get up) so the trades can get in. They try to finish as early as possible but of course if you start late you sometimes finish late. Tonight resulted in another hissy fit with gestures and hysteria as the electrician was blocking the driveway - he was in his van and trying to leave! I'm not certain what more can be done apart from ordering her a nice bulk supply of Valium.

Stress makes symptoms worse so I've ended up wobbly and tearful. Fortunately the neighbour up the driveway has said I can park in her driveway so at least I won't have to scale the driveway every day. At least they are just short term renters so we don't have to face years of animosity.

I have also had a neuro appointment. It was with my usual neuro's fill-in and he was excellent. The main discussion was my swallowing difficulties. He's arranged a referral to Gastro to see if it is another health problem, because MS and hip dysplasia are not sufficient, or MS related. He says it's rare in MS but I read perhaps 30-50% of people with MS have swallowing difficulties! Although I think they are more in the food transfer from mouth to throat. Anyway if it is unrelated that's apparently a yay(why I don't know!) because if it's caused by MS it means a diagnosis of progressive MS and apparently I can expect a degree of symptom worsening at the same current rate. Don't you love this disease!

On the bright side, if I keep progressing like I am my memory will soon be like a goldfish's and I'll get to meet new and exciting people over and over again.

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Monday, August 6, 2012

Becoming even more of a hippy chick

My MS is pretty much on the back burner at the moment, overshadowed by a hip dysplasia. My right hip joint seems to have forgotten it is a ball and socket joint. My extra lip on my acetabulum is preventing me from lifting my leg more than a couple of centimetres and my dodgy femoral head means I can't bend over so dressing appears not dissimilar to Houdini escaping from a strait jacket.

I have some high powered NSAIDs - Brufen - but it no longer touches the pain. The Ortho's plan had been for me to take twice daily doses for two weeks and then cut back to once daily. Had the good of my steroid jab not been counteracted by my joint popping out and causing a new round of inflammation I'm sure it would have been an excellent plan. Instead I was popping Brufen like lollies in the States and now I'm home I'm trying to cope on one tab a day and basically becoming a bear with a sore head (or hip). September follow-up seems so far off.

If I go back in September and he wants to keep putting off surgery so I can get by on one surgery for my lifetime then there may be bloodshed. My quality of life is severely compromised not by my chronic incurable debilitating disease but by a malformation that can be fixed. To deny this would be cruel. It would vastly improve my quality of life - I could walk, bike, climb stairs, do up my shoelaces, get in a regular car comfortably, walk the dog, do the food shopping and who knows what else. Of course once it's fixed I'm sure I will be more aware of my MS!

My major MS problem at the moment is cognitive. I have the memory of a goldfish, I feel slightly confused all the time and sometimes am not certain whether I dreamed something or it actually happened. Not a nice feeling - it's like having dementia but knowing you have it.

The bathroom renovations in our house are on-going. I am starting to think they'll take 3 months all up. I struggle with the stairs and the only functional bathroom is downstairs. Six people are trying to coordinate the use of one very small shower room/WC and it is not a pleasant room at the best of times. I stood beside the shower base in the main bathroom (it and the bath are the only fittings in the room) and tried to lift my leg high enough to get over the lip - not happening easily. I stressed the need for it to be negligible in the consult but I think people don't realise that saying you can't lift your leg means exactly that not that you can't lift the thigh to horizontal with the floor. I keep telling myself it'll be fab in the end but I'm starting to wonder.

I have another neuro appointment this month. My regular Dr is on parental leave so it'll be with Dr X. I'm not certain of what the point is but we'll see. They'll probably try to tempt me with the latest drug where you get a month free and then have to pay. Sounds not dissimilar to what they do with meth, crack etc. I will have to play the unemployed card I think.

So I'm holding out for major surgery and probably have rose tinted glasses about what the outcome will be (a guy around my age had it and then did IronMen - not supported by the medical community). It can't make things worse really though. If I can walk that will be fantastic. Though I'm not certain they realise how far I'd plan to walk. I will certainly try to avoid running but there is no guarantee of anything in this life. Hopefully my left hip will continue to behave and I'll manage to rebuild the muscles on my right side to support my hip

So I'm close to becoming a glass half empty person.

Surgery or bust say I

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