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.

Friday, April 01, 2016

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.

Thursday, March 31, 2016

Still trying

Blogger helpfully lost the last post I wrote and I resent having to reconstruct posts because Google changed its its mechanism for loading photos (it did) and their saving system didn't work. Now I got soft-hearted and let the cats in at 1 AM and Max is in the shower howling  and running around in a fit. All because I got tired of barricading myself in my bedroom.  I enjoyed sleeping with them but not when they decided to use me as a racetrack or trampoline at 3 AM. Once I have been awakened at an ungodly hour I have a difficult if not impossible time getting back to sleep. I've had trouble sleeping for 30 years or so and fibromyalgia hasn't help. The cats have the upper hand by diving under the bed where I can't remove them. I get soft hearted because Max is gorgeous and The Imp is very affectionate and wants to cuddle.up.

I wanted the post a photo of my new lounge room with the pale oak laminate flooring, lovely Oriental carpet, new sofa, etc but Google isn't helping so hang in there. I also fell in the kitchen because my leg fell asleep and I have some truly impressive bruises on my left side which are quite painful. Tomorrow I hope to get a visit from my friend/cleaner to hang loads of sheets  and do other cleaning tasks. I have to work on my taxes which alternately scare the c**p out of me simply by reading the instructions, and also realize they don't apply to me. Anything that starts off the " income exceeding $200,000" calms me down because I don't fit in that bracket. Obviously that's what they want, not minnows like me.

My map of my section of Eastchester circa 1910 arrived and I need to find a frame to put it in. I also discovered a book issued for the town's 350th birthday which so far they won't sell over seas so I have deputised J to attempt to purchase it. So much history, so little time! I owe letters to nearly everyone, especially friends from junior high. Must get a** in gear and accomplish something! I did pull out some roving (purple) to sping and some red sock wool for another pair of bed socks for J. If there are friends out there who would like socks, please get if touch unless you are in a hurry. I love knitting socks and I have a huge plastic box of raw material to work with.

It's not 1.40AM and the cats are banished again so I will try sleeping again.