Tuesday, April 03, 2018

I have to admit I have one true addiction and that is to automobiles. I can read about them all day, drool over photographs, and sigh about descriptions of engine sound. This dates back to my childhood in the 1950’s when I took it as a matter of pride that I could identify every new model Detroit produced in the days when a new model came out every year. I love driving fast as well, and my Ohio friends will remember my little red pocket rocket, my FX/16, which was rated to 140mph, although the fastest I got in it was 115mph due to the fear of my passenger. I was a big street rod fan and loved when the National meet was in Columbus. J and I spent a lot of time ogling cars. I wanted to find a 1948 Plymouth coupe like my mother drove when I was young. It was a true classic. Real hot rods don’t interest me; I like the creature comforts of a modified car.

I never have been much of a racing fan, though and can’t get enthused over fancy technological marvels that race around a track. Something approaching true stock cars racing and not the boring NASCAR or Aussie V8 shootouts. Formula one leaves me cold. I don’t want to watch cars go fast; I want be behind the wheel.  In the past year or so I’ve gotten into classic cars ranging from 1930’s models through Jags and such in the 60’s, to current Supercars like the Bugatti Veyron. My long time passion has been Lamborghinis ever since I saw my first Countach. I’d love to drive one but with my current mobility issues I don’t think I could get in it, or more importantly get out. So instead I have posters on my study wall like a teenaged boy.

I’ve learned appreciate the fine points of “brass cars” as pictured below, restored cars vs. all original cars, sports cars and touring cars, Dusenburgx, Bugatti’s old and new, and current customisers. I wish I had the money to get a custom car. It would be very hard to choose what exactly I want. I’m currently thinking about replacing my beloved Mazda 3 with something larger because I need to get a motorised scooter in the back and a hoist to lift it in and out. So instead of sports cars, I’m looking at SUVs. Dreams have their limits, sadly.

Thursday, January 18, 2018

As one of the side effects of my myriad conditions, I suffer from insomnia. I have battled it since at least the 1980's and it got worse when I got fibromyalgia. Now it raises its ugly head about one day (or night) out of three. I went through wrangles with the pharmaceutical control board who decided, in their infinite wisdom and lack of knowledge of my conditions, that I didn't need my sleeping pills any more. Had there been an alternative that worked I gladly would have taken it but I haven't found one yet. Now that I'm back of the original dosage, I can hope to sleep sometimes. Tonight's not one of them. I hope to sleep before 7AM.

In the battle with awakeness, I have learned how to drink hard liquor, or spirits as they are called here. I was never able to drink straight spirits until recently and I eased into it, first trying single malt scotchs until I found several I liked (all expensive). I've also found some types of bourbon, tequila, and small batch rums that are quite tasty drunk straight. Mind you I never drink very much. Maybe two fingers (of something expensive) at a time. (Tonight it's a small batch Bundaberg rum which I think I bought as duty free.) I used to be exclusively a white wine drinker. Then the Bear and I became home brewers and made damn fine British style ales and porters. When he became diabetic we stopped that. I still drink craft beer when I have it and I've even found one brand of Swedish cider I like. When J comes to visit we often have a bottle of wine open or share a bottle of cider (it comes in big bottles).

I try, as has been mentioned before to have a BBBB -- big boring bedtime book, that is designed to turn my brain off and let me sleep. That book at the moment is Tories about Loyalists/Royalists during the Revolutionary War. I was wondering if any of my ancestors were in their number, aside from David Hotchkiss who emigrated to Canada around 1800 and fought for the British in the War of 1812. But so far the book is at a higher level than individuals unless they were someone important. It's interesting at any rate to find out how the colonial population was split and that in some ways it was a civil war although the British viewed it as uppity rebels taking up arms against their betters.They didn't let the Tories fight against the American rebels unless they had already been commissioned in the British Army.

I am feeling very stupid for letting myself get talked into a scam last week because I was having difficulty with the functionality of an app on my iPad. Foolishly I connected to a service provider (using the term very loosely) who insisted I was suffering from a security breach on my laptop when my laptop was fine and I ended up forking over several hundred dollars for remedies that they promised would solve my problem. It didn't because it wasn't a security breach but a bug in the app I was trying to use and they couldn't fix it at all. I felt very stupid after I poked around and found the company was linked to reports of scams but I followed J's advice and left bad reviews every place I could and miraculously I got a refund of those hundreds of dollars. NEVER agree to pay anybody large sums of money without doing research about the company. I was stupid and I'll never do that again.

J and I are in a spasm of automotive lust. This is not a new phenomenon for me, as I loved cars since I was a small child, but now I know a lot more, through watching shows on Foxtel, and reading books and magazines about cars, their relative merits, lusting after expensive supercars like Lamborghinis and Bugattis and learning about the finer points of paddle shifting and naturally aspirated v-12 engines. I'll never afford any of these $100K+ beauties. If I am forced to trade in my Mazda 3 it will only be because I need a bigger car to transport an a\electric mobility scooter.

Friday, June 30, 2017

In a day, it will be ten years since I lost my soulmate and one true love. I still miss him every day but I have also adjusted to living alone. I don't like it. I'm lonely, even when talking to J for an hour or more every day. His visits are precious but can't compare to having company daily. He waits on me hand and foot when he's here, when normally getting up for a glass of tea would be a major effort.

I've been struggling lately and I don't know which of my various ailments is dragging me down the worst. I'm not depressed as much as worn out. I am extremely tired all the time and even the simplest activities wear me down to the point where I either can't get out of bed or I just sit and stare. I broke my left shoulder on Easter weekend and that was the most painful thing I think I've experienced. I fell opening the fridge door and landed right on the point of my shoulder. They say bone pain is worst and I can agree. I was in a sling for about a month and am now working on range of motion. That hurt like hell to begin with but now isn't too bad. Tuesday I get more physio with no doubt more painful exercises. The pain went all the way down my arm (I broke my humerus in two places) and into my forearm, wrist and hand. The left hand and wrist are where the worst arthritis is. Not having a left arm made my balance even worse. I had to hold onto everything I could. I've fallen repeatedly and the ambos are very nice even if I get a horrendous bill for it (covered by insurance). With weak knees and shoulders there's no way I can haul myself up. I wear a medic alert button and the service also calls D who gets here quickly enough to get the door open and the lights on for the ambos. It's been better for my balance to be out of the sling but the left arm is still weak and sore, so I can't rely on it for holding me up. I can still walk short distances but the moment I stop, I'm very unsteady. I went back to my neurologist to ask him why I have seen no improvement in my symptoms since February. I still can't move my toes, for example. He wants me to finish this last round of IVIG (only two more left) and then go off it for three months to see what happens. This is sound treatment from what I read. (BTW, the Facebook CIDP group is a great source of information for any of you Facebook haters. If you have a rare disease, how can you contact others like you?) He also said there is a possibility that this is as good as it gets. It's all in those toes that I need for balance. I read about "improvement" for patients but "cure" is another matter. I am trying to get my head around being in a wheelchair for going out. (I've bought one but it hasn't been delivered yet.) I can walk, but the instant I stop, I'm in real danger of falling which would mean calling an ambulance. I haven't been out to shop anywhere except going to the chemist in a year. My knees are always weak and I've also buckled under and ordered an electric lift chair/recliner. I have a 2-seater recliner but my legs are too weak to push the recliner extension back into place.

Right now, my unsteadiness makes everything an obstacle to overcome. Getting laundry out of the washer, feeding the cats, microwaving dinner and getting it to the table. I get groceries delivered. I am currently unable to spin or knit because I can't hold my left arm up for long periods of time, but I'm improving. Even typing is hard (one time when predictive text is a godsend).  I sleep a lot, read a fair bit, geek over Rush, watch TV (either DVDs, Foxtel, or Netflix). My fur babies are a source of affection, annoyance and beauty. The Imp loves to sleep on my shoulder as much as she can. Max has learned the pleasures of sitting in my lap, although the Imp boots him off if she wants it. Max still squeaks a lot or howls when he's feeling lonely.

J is due to return in September. His earlier planned visit got postponed due to work but he got here right after I broke my shoulder which is when I needed it the most. As usual I would love company but the house is a mess. I keep it clean through my cleaner angel but clutter is hard to manage when moving around the house is dangerous. The garden is a shambles but maybe by next summer I'll be able to stick a few plants in the ground. Thank goodness I got all major renovations done before this.

Friday, March 03, 2017

While it's been a while since my last posts, not a lot has changed. I am walking without my walker, both around the house and out and about. I cannot stand in one place without holding on to something or leaning against something. That situation hasn't changed much in the past month. My neurologist decided I should have six more months of immunoglobulin infusions after I finished in February. No big deal, just got to get to The Canberra Hospital once a month to sit in a recliner for 2 hours while trying to keep my blood pressure from bottoming out. Other than that, my arthritis is getting worse, especially my hands and my right shoulder. I have to be careful not to overdo. My eyes also give me fits and frequent headaches. No cure for them except unfocusing my eyes or closing them. I went through a bit of a black spell in January which coincided with record heat, reaching 41C for a few days and in general being damn hot for weeks. I hate being bottled up in the house with the a/c on for days (or weeks) at a time.  Even though I'm housebound I like the fresh breeze blowing through the house. I haven't attempted driving yet although I think I can. I get so tired just going out on necessary jaunts that adding driving to the mix would be too much.

J came over in December for a couple of weeks and we had a nice visit. We didn't do as much as I wanted to, but my body didn't want to go out exploring as much as my head did. And I do get tired pretty easily. He's due to come over again shortly.

In the meantime I've also revived another musical interest, namely the Canadian band Rush. I loved them in the 80's and lost track when I came to Australia, since they never were big here, and never toured here.  I saw a documentary about them and then started listening to all their albums including the ones I missed in the intervening years, then watched live performances and now am off chasing trivia, looking for bootlegs and talking to other Rush fans. Unfortunately this all coincided with the band deciding to stop touring completely and perhaps retiring. They've been at it for 40+ years so I can't blame them but I am kicking myself that I never made the effort to see them play while living in Ohio in the 80's. We made a big effort to see Clapton live during those years but not much else. It's kept my interest up and got me out of my head. Their music is complicated both lyrically and musically and gives one a lot to think about. Even though they play loud and heavy rock, the songs are around concepts like free will, world politics, loss and life. I thank them for many hours of happiness.

I'm still doing fibre-y stuff. I'm still spinning that wool that I said earlier seemed to go on forever. It does, it seems. I'm also washing a 17-micron merino fleece that is seriously beautiful but seriously dirty. Getting the gunk out of it takes either a lot of pre-washing attention or post-washing combing. Also hard on the hands. I'm planning on working on a quilt if my hands and eyes cooperate. I've got one that I want to piece together after I disassembled it when the colour ran. I may even attempt to do some plain weaving since I have potentially found a way to tie up the treadles on my loom without getting on the floor. Other days I lie in bed reading or working on jigsaw puzzles on my iPad. And listening to Rush....

Thursday, September 22, 2016

Why I (sometimes) hate (some) doctors

Specialist doctors seem to think the patients have all the time, energy, and money in the world for them to poke around in my health profile for something new to pin on me. The mere suggestion that there might be something awry in my body sends them scurrying away to book me in for tests and then bill me mucho for the privilege. I've got two specialists at the moment who are determined to find something wrong with my breathing and my heart. This all results from my little adventure in July when I fell and hit my head in the bathroom and was curled up in a cramped position when they finally got me out after 2 hours. I was not breathing normally and was generally not on the same planet with the rest of the world. Within 24 hours I was breathing normally and was back to my normal abilities and personality. The doctor officially in charge of me was amazed at the transformation and almost couldn't believe I was the same person. My friends assured him that this was the real me.

However, the breathing problems have got me sent off for breathing tests (I passed), an exam with a respiratory specialist, who tried his best for me to give him answers to fit his diagnosis (sleep apnea) although I have none of the symptoms. He persists in ignoring the sleep problems that are associated with fibromyalgia and tutt-tutts over me taking sleeping pills. Despite my protestations that I do not have sleep apnea (the late Bear did and I know the symptoms), he's got me signed up for a sleep study. Doesn't he realise that CIDP is at the top of my list of diseases to conquer and I don't have the time or energy to chase ghosts?

I have the same trouble with my cardiologist who is convinced I have a heart problem despite doing lots of tests finding nothing. He wants me now to have an angiogram and I have put him off (the doctor and hospital scheduled it without consulting me) and if he keeps pushing I will insist on waiting till J is here to go with me. I have no symptoms of heart problems.

If they would ever ask about fatigue or pain I would give them a long list of issues but they don't, because I'm too busy denying that I snore. Don't they get that my number one issue right now is regaining my balance so I can walk again? Once that's dealt with I might have the leisure to have my breathing investigated, etc. Each specialist wants to treat his own area as the most important thing to me. And none of them know a thing about fibromyalgia and therefore do not link symptoms to that as cause. FM has a sleep disorder associated with it which is why I take sleeping pills.

Wednesday, September 14, 2016

Life in the slow lane

I never thought my life would come to the imperceptible snail-like pace it has devolved into.  I had so many activities that I was waiting for retirement to indulge in, but I hadn't an inkling (who would?) that my body would pull the rug out from under me and make simple tasks seem like major achievements. Today I took a shower and washed my hair, and wound two hanks of yarn into knittable cakes using my ball winder and swift. That's it. Making a sandwich and heating up a can of clam chowder was dinner. I can shuffle/stumble/stagger around the house without my walker but am super cautious.  I haven't fallen in 3 weeks and would like to increase that to a month at least. Aside from those Everest heights, I read, sleep and watch TV. Oh, and go to an unending stream of doctor and other health related appointments. A thrill a minute here.

To indulge anybody still there who has an interest in my fibre pursuits, I am knitting a pair of socks for Miz B, and about to try some simple lace scarves. I almost have a jacket ready to sew together. I am spinning a Romney and mohair blend that seems to go on forever. I have decided to abandon weaving because there is even less possibility of me being able to get on the floor and tie up the treadles on the loom. As mentioned before I will go back to quilting, and maybe finish the needlepoint project I have been supposedly working on for about 10 years.

I would literally not still be here without my cats.  They love me unconditionally, and anybody who says only dogs do that has never met my two furry children. The Imp turns 12 this month and Max 2 and they have completely different personalities aside from both being Burmese. The Imp is like a limpet who can sense a vacant lap from the other end of the house and immediately fills the void. She is mostly silent, chunky, and polished pewter. Max is long and lanky, full of energy, always hungry, and extremely vocal. Unfortunately, he doesn't have a normal cat-like voice but squeaks like a dog's chew toy. We have long conversations in his squeaky language but I don't know what we are talking about.  He's got beautiful chocolate Burmese colouring, big golden eyes, and a huge purr.  He chews through cords, loves his pet pig, which he is unstuffing, and carries a cat bed around the house, despite it being almost as big as he is.

There. no bee in my bonnet tonight. Just an attempt to let you know what goes on here. I hope there isn't another rare disorder out there with my name on it and that I continue to improve from my immuno globulin infusions. Five more monthly doses and I will be done  Since nobly knows for sure how they work in curing things I have no way of knowing what the next five months will be like.

Tuesday, August 23, 2016

It's all about the music

I know it's been a while, but when the urge comes to blog it's usually in the middle of the night. For once it's a reasonable hour and I have nothing on the horizon except recovering from (she hopes) a particularly nasty bout of IBS.  Alone with my iPad and various things popping up on FB leads to thoughts of music and why many of us of a certain age seem to be stuck in the '80's and the hits we loved then.

Since I am going to talk about music from back then, I have to open with a disclaimer about drugs. I didn't do them. I tried pot a few times but it mostly put me to sleep, so I didn't see the attraction. (What might I get if I lived somewhere that had medicinal marijuana for pain?) Besides, I could totally zone into the music and light show without my consciousness being altered. I am a person who lives with her emotions very close to the surface and they can easily be accessed by the right stimuli.

Beatlemania? Hell, yes. Followed by all other British rock bands morphing into The Who, Clapton, Deep Purple, Yes, Rush, Boston, Jethro Tull, all without leaving behind the Rolling Stones and the various separate Beatles, most especially George. I have seen the Stones live twice, once at their first US performance in 1964 and again in a stadium in Charlotte for the "Sticky Fingers" tour. I saw Tull live at UNC but few of my other favourite bands. One of the essentials for my dorm room was a decent stereo. A vote of thanks to YouTube for having lots of videos (of varying quality) of many bands. While I am not a die-hard Foo Fighters fan, I really liked their cover of Rush's "Tom Sawyer" with lead vocals by John Davison, who's currently fronting Yes on tour. Since all these bands are from decades past, their original members are getting a tad geriatric if they haven't dropped off the twig already. Thanks to Ringo Starr who is still touring at 74 with his "All Starr Band" which includes Richard Page of Mr Mister (who still produces good solo material) and a few leftovers from Toto so they continue to keep music alive. My favourite radio station plays lots of '80's music so I get to sing along when I am permitted to drive again.  I wish somebody would come along with music that really grabbed you and could keep it up for more than one album. I like Pearl Jam but not really die hard.  I do like Train quite a bit and the Wallflowers. Any pointers to bands of this ilk would be appreciated. I do not like hip hop in any form and I never turned the corner in Dead territory. Still a middle of the road teeny bopper who liked hanging around in record stores. One of my favourite trips when I lived in NY was to go to Sam Goody's on the corner of 5th Ave and 42nd St to look for the latest vinyl. And I cherish my English pressings of most of the Beatles thanks to my pen pal in the UK. I played hooky from school to stay home and listen to Rubber Soul over and over..

P.S. To those out there who are not on FB, a brief update on what's going on with me. I went to the States at the beginning of May and became ill immediately, losing all control of my balance. I started falling and fell 4 times while I was there. I could not feel my feet or move my toes. I went to my GP when I got home and was referred to a neurologist. He diagnosed CIDP (chronic inflammatory demyelinating polyneuropathy). The treatment is infusions of intravenous immoglobulin, of which I have had 5 doses and will have one a month for 6 more months. I continued falling until I fell in the bathroom getting ready to go for an infusion and hit my head. I ended up in hospital for a week and only got out by driving my doctors crazy.  If you want to know more about the condition or its treatment, Google on.