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
- Posted using BlogPress from my iPad
Monday, August 6, 2012
Friday, July 27, 2012
The heat is on
Two and a half weeks into my US odyssey I am still alive.
I have survived being stranded by my shuttle company in San Diego - tears were involved. I was rescued by John and John, two Mexican shuttle drivers, who went beyond the call of duty to get me to my flight to Las Vegas.
I survived the heat of Vegas - it is an incredible heat. No wonder no one leaves the casinos.
I spent 5 days exploring San Francisco, which was fun. I think it marked the turning point for my poor hip though.i saw all the sights, toured all the museums, at all the chowder and then was delayed leaving because VP
Biden was in Oakland and my plane couldn't take off to go to SF.
I now have this TSA thing sorted. My favourite point was when a seasoned traveller told me I didn't have to take my watch off. He left his on but we were in the line for the old school detector ( as opposed to the submissive surrender machine) so what do you know - he set it off!
I also did Universal studios and a movie at the Graumann's theatre in LA - Abraham Lincoln - vampire hunter. It was about the experience is all I can say.
The end is in sight. I've had 2.5 days at the Disney theme parks here in
Anaheim and am now enjoying the RWA conference. Lots and lots of American writers - volume levels may be hazardous to your health. I met Karina Bliss at lunch. What are the odds of having a fellow kiwi sit down next to you at lunch when there are over 120 tables and 8 women at each!
I am struggling to walk and sit. Oh and to lie down. I'm ODing on my pain drugs and using lots of heat (I think my gel pack causes distress to the TSA - my bag has been inspected). I am not looking forward to the long flight home in a few days. I got swollen feet in Vegas after 2 flights and they got worse in San Fran so I obsessively moved them the whole flight to LA. Worked!
In a country supposedly constantly looking for tips you would think I would be a target - helpers coming out the wazoo. Wrong! I have had to buy another bag,partly to accommodate shopping, but mainly to balance out my stuff so my arms don't get too tired trekking around airports and as somewhere to put my crutches.
So arriving anywhere means balancing everything just so and hoping nobody gets in my way. I paid the skycap at San Francisco so I wouldn't have to go through the whole print your boarding pass at one location, get your luggage weighed at another and then drag it over to TSA to be checked through. I have been priority lined twice in all my travels apart from Alcatraz where they were brilliant. So I am doing the independent disabled traveller thing whether I like it or not.
So I continue to penguin on but looking more like a zombie penguin at present. Maybe I should change the name to lurching on.
I have survived being stranded by my shuttle company in San Diego - tears were involved. I was rescued by John and John, two Mexican shuttle drivers, who went beyond the call of duty to get me to my flight to Las Vegas.
I survived the heat of Vegas - it is an incredible heat. No wonder no one leaves the casinos.
I spent 5 days exploring San Francisco, which was fun. I think it marked the turning point for my poor hip though.i saw all the sights, toured all the museums, at all the chowder and then was delayed leaving because VP
Biden was in Oakland and my plane couldn't take off to go to SF.
I now have this TSA thing sorted. My favourite point was when a seasoned traveller told me I didn't have to take my watch off. He left his on but we were in the line for the old school detector ( as opposed to the submissive surrender machine) so what do you know - he set it off!
I also did Universal studios and a movie at the Graumann's theatre in LA - Abraham Lincoln - vampire hunter. It was about the experience is all I can say.
The end is in sight. I've had 2.5 days at the Disney theme parks here in
Anaheim and am now enjoying the RWA conference. Lots and lots of American writers - volume levels may be hazardous to your health. I met Karina Bliss at lunch. What are the odds of having a fellow kiwi sit down next to you at lunch when there are over 120 tables and 8 women at each!
I am struggling to walk and sit. Oh and to lie down. I'm ODing on my pain drugs and using lots of heat (I think my gel pack causes distress to the TSA - my bag has been inspected). I am not looking forward to the long flight home in a few days. I got swollen feet in Vegas after 2 flights and they got worse in San Fran so I obsessively moved them the whole flight to LA. Worked!
In a country supposedly constantly looking for tips you would think I would be a target - helpers coming out the wazoo. Wrong! I have had to buy another bag,partly to accommodate shopping, but mainly to balance out my stuff so my arms don't get too tired trekking around airports and as somewhere to put my crutches.
So arriving anywhere means balancing everything just so and hoping nobody gets in my way. I paid the skycap at San Francisco so I wouldn't have to go through the whole print your boarding pass at one location, get your luggage weighed at another and then drag it over to TSA to be checked through. I have been priority lined twice in all my travels apart from Alcatraz where they were brilliant. So I am doing the independent disabled traveller thing whether I like it or not.
So I continue to penguin on but looking more like a zombie penguin at present. Maybe I should change the name to lurching on.
Location:W Katella Ave,Anaheim,United States
Sunday, July 8, 2012
Going on an adventure!
Tomorrow I set off for 3 weeks in the US! I've got a buddy along for 10 days but then I'm on my own. This trip was planned prior to my diagnosis - 18 months ago! Now I will get to see if my plans have worked out.
I have one less worry - not being on injectables anymore means my carry-on is not totally taken up with needles with no room for anything else. There is still a large bag of pills but they are not too cumbersome. I have had to collect my next repeat early so I'll have enough so now I have bottles everywhere! They all have to be in my carry-on to avoid the risk of them going to Norway and me going to the US - don't laugh - a friend is currently in France luggage less.
I have hmmed and hard over taking my wheelchair. It is weighing up the risk of relapsing and totally losing the use of my legs vs having to heft it around for probably only 2 days of use. I think I've made the decision to leave it. It was sort of helped by my travel companion saying "I'm not pushing it." I still struggle with hills and kerbs so I need anyone with me on board with helping. I have checked into hiring over there and it is possible but not that cheap. I would also probably want to store it rather than take it to San Francisco (hills!) and that would be $120! At ComicCon they have loan chairs you can have for 2 hours - probably dread transit chairs! There are scooters available for hire at Universal Studios and disneyland so I figure if necessary I'm covered. Also the state of my bike spokes after flying makes me reluctant to trust anyone with my chair!
I will be taking my crutch and splint. I've also had a moderately successful steroid injection in my right hip to help reduce inflammation from my hip dysplasia which has flared with the MS. So I guess I'm as ready as possible!
I have one less worry - not being on injectables anymore means my carry-on is not totally taken up with needles with no room for anything else. There is still a large bag of pills but they are not too cumbersome. I have had to collect my next repeat early so I'll have enough so now I have bottles everywhere! They all have to be in my carry-on to avoid the risk of them going to Norway and me going to the US - don't laugh - a friend is currently in France luggage less.
I have hmmed and hard over taking my wheelchair. It is weighing up the risk of relapsing and totally losing the use of my legs vs having to heft it around for probably only 2 days of use. I think I've made the decision to leave it. It was sort of helped by my travel companion saying "I'm not pushing it." I still struggle with hills and kerbs so I need anyone with me on board with helping. I have checked into hiring over there and it is possible but not that cheap. I would also probably want to store it rather than take it to San Francisco (hills!) and that would be $120! At ComicCon they have loan chairs you can have for 2 hours - probably dread transit chairs! There are scooters available for hire at Universal Studios and disneyland so I figure if necessary I'm covered. Also the state of my bike spokes after flying makes me reluctant to trust anyone with my chair!
I will be taking my crutch and splint. I've also had a moderately successful steroid injection in my right hip to help reduce inflammation from my hip dysplasia which has flared with the MS. So I guess I'm as ready as possible!
Subscribe to:
Posts (Atom)