I am sorry to say that this project may have been overly optimistic. I have got no feedback so I am writing into a void. I began this back when blogs were new and it was a way to keep in touch with friends back in the State and give them an idea of how different this country was. My primary target was BFLB who was very important to me when I left Ohio. She has since passed away, as have several other important friends back there. 

My health and mental state make the effort difficult. I am depressed a great deal and putting on a false front for a nonexistent audience is frankly beyond me. Until and unless I get some feedback.from more than one of two people, the blog goes back into hibernation. 

 I just got an ad from USA Foods, the store in Melbourne that sells American delicacies. Unfortunately they remain out of stock of the things I really want (clam chowder, Crystal Lite drink mix) while I remain in stock here with things like Rice Chex, A & W cream soda. Since I don’t cook anymore, there’s no point in buying things that require use of the oven.  I know there are many Yank expats who crave good Mexican food but I’m not one of them. While I can get Turkish, Singapore, Indian, Greek and other luscious cuisines, Mexican is not high on my list. Mexican usually leads to intestinal upsets from my sensitive gut.  I would love to bake or make bbq but standing is a dangerous proposition. I once managed to fall and break my shoulder merely attempting to close the refrigerator door. 

My bouts of insomnia continue no matter what I try. Reading, doing jigsaw puzzles, watching my new YouTube favourite Baumgartner Fine Art Restoration where I can honestly say watching paint dry does not put me to sleep. One thing that does help is putting the works of Liquid Mind on shuffle. The person behind the name actually works with music therapists but it’s still not a certainty for me. 

Long ago in blog years I described my reading habits and I know I’ve picked up a few new readers, so I’ll recap. I largely alternate science fiction and mysteries. No fantasy, please, and I’m off military sf. I’m partial to first contact, time travel, exploration, and alien civilisations. I am a die-hard Star Trek fan of all series except Discovery. Mysteries are usually historical, from the Middle Ages to 1930’s Sri Lanka. I occasionally read something contemporary but that’s usually saved for TV. Every now and then I’ll add a Regency romance or a Japanese or Scottish romance. At night I have my Big Boring Bedtime Books, nonfiction, sometimes biography but mostly history or science. My first husband got me hooked on English history and I now know way more than is probably good for me. On the other hand, I rarely read about Aussie history. I feel like it’s forced down my throat and I read a lot when I was first was falling in love with the country.

Because everything happens on my iPad, my hands get very sore. Like they are right now so I will stop and pick up later with particulars of reading likes and dislikes. 

It’s been a while! If you read my blog in the past 4 days you are lucky because I managed to type over it with this post and all that juicy medical stuff is gone.  If there is somebody out there who wants a recap of the Tale of The Knee, please leave a comment and I’ll try to hold onto it this time. Suffice it to say after 4 years, threes infections and 6 surgeries, I am no longer the host to bacteria but I can’t walk. I live in bed and only get out to relieve myself, to shower, and to visit doctors as necessary. And add to that, my GP retired after about 20 years of service, so I’m starting all over. I have a nice female doctor who is doing well considering what I brought her. 

I am struggling to remember how Blogger worked and refuse to move to a different platform. I live attached to an iPad Pro, which is easy to use but a tad too heavy for my arthritic hands. After a day holding it for Kindle books, doing jigsaw puzzles with Magic Puzzle, colouring fine art in Happy Color, scrolling through Facebook, reading the news and watching any one of 5 or 6 streaming services, my hands are stiff and sore. Jim’s built me an easel thing that projects over the bed which is fine for watching Star Trek, Bridgerton, or Baumgartner Fine Art Restoration. Aside from the occasional doctor visit, such is my life. 

Regarding the Knee, it gets visits from the community nurses fortnightly. The opposite week we (I should say Jim) changes the bag here. Also fortnightly we get blood tests and they have been all positive. My inflammatory markers are low and I’ve been tested for everything anyone can think of. I take ciprofloxacin twice a day with all my other meds, and will for the rest of my life. Any bug that can get in will head directly to the knee. Why stray bacteria love knee hardware is one of those mysteries of life. 

 

This is one of the delights of life at the moment. Her name is Sophie and she’s a very small 3 year old Burmese cat.  She is slowly getting to like cuddling with me and frequently sleeps all evening on my lap. She is very energetic, loves to climb to the highest point in every room, loves wrestling with Max and washing him thoroughly. 

This will give you an idea of the difference in size. Max is 10 and is a total greedy guts; he complains loud and long if he thinks he deserves more. Sophie we tempt with special treats and have to find her when it’s mealtime. She will sit at my elbow if I’m eating something she likes (chicken) hoping I will be soft-hearted. (The thing behind Max in the photo is the easel with power cable). When she sleeps she goes solidly out and poking her or calling her name gets you nowhere. One has to pick her up while she’s totally limp and eventually she blinks awake. They both sleep a lot and make up for it with zoomies, wrestling, and patrolling the surroundings. Her coat is like velvet and almost black; his is like silk fluff. They both like belly rubs. 

Two updates that I’ll address later.  I am still a Swans fan and am thrilled that they are at the top of the ladder halfway through the season. I have revived my Yankees fandom but the games are rarely broadcast on ESPN.  They too are doing well. Knitting and fibre stuff has fallen by the wayside. I’d like to do more but the logistics of doing any of it in bed is beyond me. 

It’s quite obvious that there’s been a gap in posting. I’m on smoother paths now but not cured. In March of that year we’d like to forget, I developed an abscess in my lower right leg. Very quickly, it popped and I was raced off to to hospital. Once it was examined by my medical team, the decision was taken immediately to do the dreaded revision. What followed was 7 weeks on one leg with stronger antibiotics. Then a brief wait without antibiotics to see if the infection rushed back in.  It didn’t. Then a new knee with some not very rigorous physical therapy and then home. The infection is under control but I am on long term antibiotics.

Moving around is extremely difficult. I’ve been home about a year by now and I’m still having trouble moving because of the lack of balance  I can stand and pivot to get into my commode chair or into the motorised wheelchair but it’s not graceful.  Shoes are difficult (lympheodema) and I have heaps of shoes that fall into various categories of what I can get my fat feet into, and what I can walk (even 3 steps) in.

I also developed a right shoulder pain that developed from using the stand-up support frame while I had no knee. It’s left me with pain from neck to fingers. With careful daily nursing, it’s decreased but a single mistaken reach and it’s back. I still get headaches but if I manage my reading time, it’s bearable. I acquired a viral infection in my left eye that threatened my graft. I’m on long term anti-viral medication. My ophthalmologist won’t operate on my right cataract because of fear of damaging the graft there. My vision is crap.

Jim is here mostly permanently now. We applied for a residence visa last April, and, after filing masses of documentation (all digitally), we were approved. Jim is being a live-in nurse and he does everything for me.  I cannot express my gratitude for his help. He shops, does laundry, feeds the cats, goes to the chemist, drives me to doctors, you name it. We watch baseball and talk to each other a lot, which is what I really missed. We have our differences but nothing too serious. At least we can talk them out face to face now.

Believe it or not, I still do fibre stuff. I have almost completed a blanket made of squares of pin loom weaving of my own handspun. The debate currently is how much it will shrink when it get fulled. It is very light but also very warm. I hope the cats don’t rip holes in it. It’s grey with a blue halo of wool and mohair.

My concern, aside from COVID-19 and the fate of the planet (what’s to worry about?), is my beloved Imp. She’s 17 now and it shows. Her coat is no longer glossy and her rear legs are stiff. She has kidney disease and has lost weight dramatically. But she’s on my lap as long as we can manage with lots of petting and baby talk. Max is no longer a kitten but he still wants to play at 4AM whether I’m awake or not. He’s so lovable and still squeaky. We wonder how he’ll handle the loss of his sister.

I’m tired and typing is a chore. I’m still reading scifi and mysteries not to mention books about baseball and history. Good night for now

‘

Here’s the thing about my insomnia. I go to bed around 11, take my sleeping pills and then try to get drowsy. I’m trying to turn off the active verbal parts of my brain, so I do jigsaw puzzle, adult colouring apps on my iPad, or play mahjong. Things that are repetitive but not to extent that I’m simply bored, but of enough interest so I keep at it. If I’m lucky I’ll feel drowsy by 1AM, sometimes later. I turn the light out settle down and go to sleep and wake up an hour or two later, wide awake. I used to (and do on occasion) just not sleep at all. I’d finally fall asleep at 5AM or later or not at all. Sometimes it’s my brain chasing its tail, sometimes I’m just wide awake but progressively more tired.  I can try keeping the light off and toss and turn, I can read my BBBB, I can go back to the puzzles, but I’m just not sleepy. I pay a penalty for this the next day by sleeping past the sociably acceptable time (like noon). But I feel like I’m losing half my day.

Medical report: I haven’t seen a doctor since I was discharged from hospital. I should call my infectious disease doctor next week to see if he’s back from holidays and wants to see me. The knee is very slightly better. It is still red, hot, and swollen but bit less of all of that. It’s still weak and quite painful if I twist it, like trying to put on shoes. I really can’t tell from my angle whether there are changes. I will need to have blood work done to find out whether my inflammatory markers are up or down, and to check on my very slight anemia. I still am mentally prepared for knee revision (taking out the existing knee and replacing it). I’m still on 2 different antibiotics every day.

J is back in the states but he’ll be back next week. It’s been a struggle keeping going without him but I do manage to take care of myself. I sleep a lot, not just because of insomnia but my body seems to demand a lot of sleep when I’m fighting any illness. I read, I watch TV. I’m busy making woven squares on my pin loom for the ultimate blanket. The loom is 4” square and I’m using the handspun derived from a gift. It will no doubt take a million squares and I also need to find out how much they will shrink when washed. I endure the attention of the cats. The Imp wants to sit on me, practically 24/7. Max roams around the house and jumps up on the arm of my chair and screeches in my ear. He subsides with petting but then goes off again and comes back and does it again. He’ll rarely sit down. Sometimes he brings me a toy to play with. Feeding them is chore because of bending down which is a very dangerous manoeuvre for me. I have a mountain of laundry to do, again because of the bending and standing required.

To all foreign readers (all two of you), I was not anywhere near Australia’s recent bushfires. The closest ones to me were about 50 miles away and unfortunately burnt out all the wonderful forests along the NSW south coast, which is Canberra’s vacation spot. We have been in drought for several years and it doesn’t take much to get it going. People died, millions of native animals and birds died. Here we had so much smoke in the air that the air quality was the worst in the entire world. Many places shut down and I just stayed indoors but it was very oppressive and frightening. We finally got some rain which has dampened everything down but it will take years to regenerate.

For once I have no exciting news regarding the infection. Just plugging along with antibiotics. I think they will be extended for an additional few weeks but we’ll see. I worry that they’ll decide to operate just when J leaves. Banish that thought!

We had a simulated Thanksgiving dinner tonight, one day late. J got a frozen rolled turkey breast, and we opened a bottle of bubbly. We had roast sweet potatoes, asparagus, turkey, and not very nice supposed Spanish rice. I was hoping for yellow rice like I was used to in Florida, but it wasn’t. I wanted to make corn muffins, but I’m still not up to cooking. But it was nice even though we forgot the cranberry sauce.

Speaking of bottles of wine, we have been drinking wine I have ordered from Naked Wines. This is not a plug and I have not linked to it. I started off mostly as a way to explore little known and independent winemakers. The scheme collects money from you monthly and you order what you want when you want. But the way, I can only drink whites, since reds give me migraines and I’m nervous about rose. I tend to wait till I have a decent balance and/or J is coming, because I don’t drink much when he’s not here. So far the results have been mixed. Many of these wines are not ones you would find in your neighbourhood bottle shop, and are newly established, or with limited distribution. Living in Canberra and being disabled, I can either order wines I know from previous experience or advertising, or rely on the retailer to point me at what he wants to sell. The wines from Naked have been an exploration. All are Australian, of course, but range from the Hunter to Margaret River. Some just neutral (“that’s a glass of white wine, all right”) to pretty damn good. I wanted to try Pinot Grigio but J doesn’t really like it. A good Riesling or Chardonnay is his taste, and mine too although I am a bit more adventurous. I have to watch my consumption because I will happily keep drinking as long as the bottle is open, but I shouldn’t. I shouldn’t probably drink at all with my health issues, but life is pretty boring otherwise. Food and drink are my only luxuries so I buy top shelf brands of liquor and sometimes indulge my palate otherwise. J and I did a lot of wine tourism in California and had our favourites which of course you can’t buy here. Mostly these wines cost me in the $12-20 range. I think if you’re going to drink it and then it’s gone, don’t spend a lot. We did limited experiments with high priced vs pedestrian wines and decided out palates were not sufficiently fine-tuned to notice a large difference to justify the price. Dom Perignon is very nice but worth five times of a more typical bubbly, no. And I’m not comparing to the $3.99 bargain bin.

I also indulged myself with online browsing of real estate. I looked at property in Yass, which is a little way north, to see if house prices were any lower. They’re not. But I found this absolutely over the top mansion on quite a few acres which captured my imagination. No price, up for auction. It’s a nineteenth century (I think) two story, simply huge house. I’m sure it needs expensive work, putting in a new kitchen and bathrooms but the rooms are huge. Grand reception rooms, each bedroom has an attached sitting room, all with fireplaces. I’m sure that means there’s no other heat but it’s so romantic and brings up visions of balls with ladies in lovely gowns and your fleet of servants serving grand dinners. Sitting on the verandah, overlooking the rolling hills. Romantic, but completely impractical. Sigh. Good night while I think of thundering cats running around that huge house.

Apologies to all. I promised more regular posts and then fell off the edge of the world. In mid September my knee became very much swollen, painful, red, and hot. It was almost as bade as it was before surgery. When I saw my infectious disease doctor at the beginning on October, he hustled me into hospital again. I had another needle aspiration that removed a lot of fluid and had a pic line inserted. I started getting very large doses of penicillin every four hours. After a week I asked if I could receive the treatment at home because all I was doing in hospital was lying in bed all day. I was given permission, came home, and am on the same regime I was on before, but this time I’ll be getting antibiotics for at least 6 weeks. I’m going through the Canberra Hospital instead of Calvary. It’s farther away but it has the better medical facilities, I think. That’s where I had my knee removed and replaced 8 years ago. At this stage I’m still due three more weeks of antibiotics, and I go in tomorrow to have a second ultrasound of my knee with possible needle aspiration. My knee overall is looking better. It is no longer red and hot, but is still swollen on the inside of my leg. To add to the mix, a cyst I have had on the top of my head for over a year with no pain or other activity, suddenly decided to burst open, leaving my hair full of gunk and a hole where it had been. It’s been seen to as well and I have a bandage on the top of my head.

Once again J has gotten more than he has bargained for, and has provided taxi service across Canberra weekly, if not more frequently. Most of my healing is due to his care, and his bringing me goodies like fresh figs and takeaway Indian food. I was hoping to put up my Christmas tree this year but there’s no way I could get it down by myself. In fact, summer has arrived suddenly and it’s in the 30’sC this week and continues windy. This is fire weather and so far we are the only corner of Australia not to be enduring bush fires. I was hoping when J was scheduled for a visit that we could go down to the coast for a couple of days but I am on the hospital’s schedule which means daily nurse visits.

I cannot promise to post as frequently as I had planned. I hope I can do better at least, now that I’m no longer in such pain. I hope you are all getting prepared for holiday festivities but it will be a quiet one here I expect. I still sleep a lot. I missed the World Series in hospital but I’m glad Washington won.

A brief one tonight because I’m tired and sore. I saw my infectious disease doctor today. There are no breakthroughs on offer. One strong possibility is that I go back in hospital to get stronger doses of I/V antibiotics. That will also allow my surgeon a chance to see what has developed since I saw him last. If it’s to the private hospital I was in last time it’s not horrible except I will miss being at home with J and the cats.  The doctor says the damn Pasturella is hiding in my knee prosthesis and if they can’t get a reaction with a different antibiotic mix, removing the knee and replacing it is the only option. Not happy but somewhat resigned. Of course, the knee was on its best behaviour, swollen and red but not hot or very painful. It saved that till I got home.

We ate Indian takeaway (saag paneer for me with naan) and watched Moneyball which J had never seen. Having seen statistics on every aspect of baseball for the past few weeks, it seemed a bit archaic to view the days when none of that really mattered.

Tomorrow make sure my hospital go-bag is stocked and wait for a phone call.

Gosh! This daily posting can be a grind! Just kidding. If I stop getting hits, I’ll stop.  Or if you tell me I am not writing what you want to read. Want me to rant against the entity that sometimes resides in the White House? Be glad to oblige,  but my close friends have already heard it, and most Australians I have met can’t understand either technically or rationally how we put him in office. These are the days when I’m very glad to be a long way away and I don’t read/listen/watch news because of the drivel it contains.

On that note I just finished watching season 2 of “The Good Fight” and thought it was terrific. Great legal cases, mostly relevant to our time, a great cast. I get it on Stan. I have no idea where it is broadcast elsewhere. And speaking of Chicago (because that’s where the series takes place), I listened to Michelle Obama narrate her own autobiography. This was my first experience in a long time in listening rather than reading. I found the experience somewhat annoying in that you have a person talking at you for (in this case) 14 hours and it lost its appeal along the line. She has a slight speech problem which as a linguist grated. Her book was absolutely great and I highly recommend it. She is a great woman aside from putting up with being First Lady. I thought it interesting that she accounted in detail Laura Bush welcoming her to the White House and showing her around, but not a mention about her successor. Hmmm. It was illuminating to hear about how the couple got together and worked their way up. Also the behind the scenes at the White House including how much the Obamas had to pay out of their own pockets for daily living. Of course a billionaire like the Donald will have no problem with that or will get somebody else to pay for it. I always had mixed feelings about Chicago. I visited very frequently for business and rarely had any time to explore. I am also a New Yorker born and bred and Chicago will always be the Second City. Also it was usually freezing when I went for library conventions and I hated plowing through snow drifts. I enjoyed shopping and eating out. There is/was a great German restaurant I think in what’s called the Loop that brewed its own beer and served game on the menu. I had several memorable meals there.

Today I got out and did a few things. I had another blood test done and while we were in the small shopping centre, J spotted a hairdresser who didn’t look busy. He asked if he would do a quickie haircut. Yes! I got a very basic cut which cost all of $33. The hairdresser knew all about Pasturella because he raises meat rabbits and they carry it and are susceptible to it. We also drove around a bit because it was a beautiful day. Then I came home and had excruciating pain in my leg. I wanted to watch the first World Series game and I managed to sit in the lounge room for 5 innings where the Nats beak the Astros which was very comforting. If they can do that in Houston, maybe they can do this. Go Nats!  Then (after dinner) I went back to bed in great pain. Crying and swearing were involved. I tried watching tv on my iPad, but it was pretty bad. Copious amounts of wine helped and it’s now quiet so maybe I can sleep tonight. I regret to admit that I have been drinking when I can’t sleep and sometimes for the pain. Sometimes it’s wine, sometimes tequila or scotch. Unfortunately I’ve discovered that for me the only spirits (liquor to Americans) I can drink straight up are expensive ones. So I have great single malts, and lovely tequila. It’s not a habit I like to indulge in but it does dull the noise in my brain.

Sleep well.

I promised regular posts so I had better fulfill my end of the deal. Little sleep last night again. This is getting beyond boring. I tried reading but I have to be so careful. Now I know I have a cataract in my right eye I don’t want to strain trying to read. Horrible headaches ensue. I hadn’t even thought about the implications of my infection on other parts of me, but my GP cautioned consulting my infectious disease doctor about the advisability of having a minor skin cancer removed and I think I will add cataract surgery to that. My immune system is in slow down mode and maybe adding other healing to the situation is not a good idea. I will ask on Friday.

It’s lovely having J here. Now that I’m playing hospital in my bedroom, he comes in for a chat in the evenings. Let me clarify that I sleep most of the mornings and he often goes out in the afternoons. Evenings he reads while I watch tv. Of course, tomorrow the World Series starts so I will have to rouse myself for that. I’m not all that interesting to visit. At least this time I’m not actually in hospital, unlike his last two visits. I was hoping we could go down to the coast for a few days while he’s here, but I also thought I would be healthy by now. I can’t sit in the car comfortably for over an hour and it takes a little over two to get to the ocean from here.

Spring is here and it’s gotten quite warm for a while. Canberra’s weather is erratic in spring and fall and you have to expect sudden ups and downs. My fruit trees have blossomed but the birds will probably get all the fruit. I’m hoping I can save some apples from the rosellas. I almost missed the annual spectacle of my wisteria in bloom but I did see it before a wind storm blew all the blossoms off. I was also going to try and grow some veggies in pots on the back deck but I’m not up to tending them. Besides, I think this is going to be a dry year. I really miss gardening but that’s how it goes.

We are both distressed over the rampant development going on around our area of the ACT. New suburbs popping up like mushrooms and we can’t figure out where all these potential home owners are coming from and why. All I see is a lot more traffic and precious little being done to the roads or parking areas to accommodate it. Ginninderry supposedly will have 11,000 new homes and who knows how big Whitlam will be. They’ve been planning to redevelop my local shopping centre for years but no progress has been made. Those 11,000 homes will need to buy groceries somewhere.

Well, it’s 1AM so I had better at least try to sleep. Hope to get a few hours; I have to go out for a blood test tomorrow.

Hello, folks. Yes, I am alive but not well.  I thought I would write some ramblings and try and keep it up while I’m not sleeping. My infection is going strong and I see my infectious disease doctor on Friday when I plan to beg him for the other antibiotic he’s been keeping in reserve. At this point, it might cure me and I can’t continue as I am. Potential resistance must (IMHO) give precedence to curing the disease it was invented for. At the moment the entire inside half of my knee is very swollen, red, and hot, not to mention painful. I thought when I saw him the last time I had somehow gotten a shin splint. However, one does that during exercise and I haven’t done any of that. The shin is extremely painful and I have come to the conclusion that the infection has spread. Cutting me open has not cured me so far and the blasted Pasturella just comes back from wherever it’s hiding in my body. This is also why I don’t see the point in removing my knee prosthesis. After the last clean out, I was healing quite well when it appeared again. I may be forced into another surgical procedure but I am trying so hard to not go down that road.

Otherwise, I am acting like I’m in hospital, meaning mostly bed rest and ice on my knee when the pain of the ice is bearable. So I lie in bed, read, watch stuff on various streaming services, get slept on by cats, and have had a staggeringly long run of insomnia. Yesterday I didn’t get any sleep until 4PM and then it was all of 2 hours. The knee is painful in so many different ways and sometimes that little niggle in my calf is enough to keep me sliding over the edge into sleep. It’s certainly not doing me any good but it’s not fatal. This lesson I learned in the 1980’s when J and I both battled insomnia and would meet in the family room at 2 or 3AM. That’s one reason why now that he’s here we avoid disturbing each other in the wee hours. He is an excellent nurse, and is developing into being a good cook too.

My accomplishments for today were taking a shower (a major operation), trying to watch some tv but my recliner is not at the right angle for my leg, and retreating to bed to play puzzle games, scroll through FB, and now write to you. I finished “Galleon” by C.W. Williams (on Kindle) which was very fun. I recommend it to any lover of sci-fi. I’m also reading “Wonder Boys” by Michael Chabon (in pbk). His writing style is so off the wall that I deal it out in small doses. My BBBB is “Wilderness and the American Mind” by Roderick Nash. I find it bizarre that the first settlers in America believed that the “wilderness” was not only just scarey, but inhabited be daemons and mythical wild beasts, and that merely by entering the forests you would lose your connection to God and become a godless heathen yourself, like the native people were judged. Today we worship wilderness for, in some cases like my own, its connection to a higher power, but they thought the only good land was that under cultivation.

I was looking forward to the World Series but not so much now that the Yankees are out of it. I can muster support for the Washington Nationals so that’s coming up. I forgot how much I loved baseball until I got access through giving J sports access on my cable package. We would get up in the late morning and watch whatever was playing. I followed baseball through two husbands after growing up with it and really missed it here. J and I will check out what passes for baseball here but the field is at the far side of Canberra and who knows what disabled access is like. I am using my walker all the time but covering distances isn’t fun.

Today’s ramblings

Today’s another miscellaneous post. I got my dander up by watching s Star Trek: Discovery (yes, I know it’s dreadful) but I was particularly irritated by their overuse of hand-held camera work.  Is it some kind of artistic superiority that makes camera people/DP’s want to shoot every scene in jerky hard to follow handheld? I am quite over it and scenes that include a dozen cast members that are filmed as if the camera person had the DT’s are not pleasant to watch. This is not the first occasion that it has driven me to distraction, but the first I have examples fresh in my memory.

Health wise, my cellulitis has turned the corner and aside from lingering discomfort in my right ankle and a swollen foot, it’s recovering fine. My knee, given sufficient rest, is also improving and I’ll have to do some physiotherapy to get it back to full function. I’ll also have to get my foot prepared for compression hose to combat the lymphoedema. I have yet to find a carer and am muddling along until J returns mid-May. I have a few interviews scheduled and already have a driver to doctors’ appointments.

I am consumed with desire to get back crafting but I have confined myself to bed rest until I am recovered. I watch a lot of stuff on Netflix, Prime video, Stan, and Foxtel Go. I like SBS dramas but too many have subtitles which interfere with my vision. I love Billions on Stan partly because I love Damian Lewis. I am NOT a GoT fan and could care less about the last season hoopla. I prefer Victoria, or The Blacklist. I am ticked off at Prime who notified me that Season 5 of Bosch was available. I rushed over and binge watched 5 episodes only to be told today the Season 5 was unavailable. Huh? Somebody jump the gun?

The crafting that’s calling me is quilting, but I’d also like to spin, needlepoint, and continue making squares on my pin loom to the goal of turning 4” squares into a blanket. But then I love reading, both science fiction and mysteries. If I weren’t having trouble sleeping during normal bedtime hours and ending up sleeping half the day away, I would get more accomplished. Also this falling business has to stop. I was standing at the kitchen island putting food in Max’s dish and felt myself going over backwards and caught myself, but it’s simple things like that which lead to calls for ambulances.

Hope all of you are enjoying spring or autumn depending on hemisphere. I also get annoyed when deluged in ads for spring stuff which is a little inappropriate here. Supposed to be down in single digits at night this weekend so another blanket is ready (if I only had a quilt).

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.

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.

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.

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....

torn between two cultures

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.

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.

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.

To completely change the subject

Yes, it's the middle of the night again but a lightbulb went on in my head and I had to let these thoughts out before they drip out of my ears. I've had a growing desire to quilt again and I have no idea where it came from (or didn't). I've also been discussing custom made lampshades with an Etsy vendor and therefore looking at fabric. Fabric leads to quilting in my brain. Then I suddenly realised tonight that I have been addictively playing a iPad game called 100! in which you put various sized blocks in a 100 unit square. Well, gee, that almost sounds like a quilt! No wonder my brain has had its quilt cells firing. All I really want to do is reassemble a quilt I have already pieced and make it useful again. I pieced this quilt back when I had a king sized bed and it was made as a quilt cover or whatever you in the US call the cover one puts on comforters, which we call doonas. At any rate the colours ran, I no longer have a king sized bed, and I took it all apart. I want to put it back together as a double bed quilt and the itch is beginning to out itch the weaving itch. There are so many gorgeous quilting fabrics out there that I have a hard time keeping my finger off the "buy" button late at night. But I need to take stock before I go on a spending spree.

Meanwhile, I am plagued with a non functioning doorbell: it rings when there's nobody there (and switched off) and doesn't ring when there's somebody potentially important there like the guy who is supposed to prune my wisteria. As soon as I buy a new drapery rod for the lounge I will get the handyman in to fix them.

The cat (the brown one) is currently enamoured of the plastic strap that came off a box of printer paper. Go figure.

Another late night purchase was a Nordicware swirl patterned bundt pan that I fell instantly in love with when I saw Nigella make a lemon bundt cake in one.  She fell in love with bundt cakes on a tour of the US. I couldn't count the number of bundt cakes I've made in my life but a Nigella lemon one sounds like a great addition. She's joining Masterchef this season which means I might just watch.