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.

Tuesday, March 01, 2016

I know it's been an age since I wrote but instead of giving up completely, I'm going to try and recover. My blog will still be a place for me to empty my brain of the various things I am thinking about but they are things I don't feel like putting on Facebook because they are too personal and I imagine (right or wrong) that people who read my blog are more interested in me personally then I feel FB is. At any rate here goes.

For some reason I have been interested in the history of the piece of land where I grew up in New York: the northeastern corner of the unincorporated township of Eastchester. We were a few blocks west of New Rochelle and a few blocks south of Scarsdale. Since we were so far in the north end, I had no contract with the main body of Eastchester until I attended the consolidated middle and high school. In doing my online history research I found a map from 1902 which was the first to show anything in that area, the majority of land being designated as the New Rochelle Water District. There was on this cadastral map (showing land owners) a small block of land labelled C. Hanfling. I lived on Hanfling Road. Then my co-conspirator found Conrad Hanfling's obituary from 1937 which described his truck farm in Eastchester, which his daughter was continuing to run. My next map from 1940 showed the parallel roads of Wilmont and Hilburn which ran through and ended in C. Hanfling's farm. The land north of the farm was already divided into blocks whose names I remembered from walking to and from school. Our house was built around 1954. I remember that our house was built on farm land and my mother had a load of pig manure spread on the side yard for her garden. It really stank until it decomposed! I've looked at the house on Google maps street view and all the landscaping and plantings are gone. The side yard is paved as a patio and all the roses, wisteria, hostas, iris and daylilies are gone. Eastchester and the entire county of Westchester exploded in the 1950's as it became the archetype of New York suburbs. I have ordered a history of Westerchester from Amazon to learn more. I am also interested in the history of Dutchess County which is where our branch of the Cornwell/Cornell family started out. I am searching for my grandfather's birthplace. He was born in 1874 which is before New York registered births. In the 1870 census the family is in Albany and in the 1880 census they are in Schenectady. I would have to find church records and I haven't a clue what church they attended in whatever city.

I am getting ready for J's arrival on Friday for a 10 day visit and while he's here we will plan my trip in May. I've found a housesitter that the cats really seem to like. Max even came out and let a total stranger scratch his ears! He is driving me nuts with his squeaky scratchy voice. However, my purchase of a two-seater recliner for the living room seems to be a hit. Max is not a lap cat but he will curl up next to me on the recliner, which he couldn't do on the wing chair that fit me and The Imp only. My new sofa was delivered today and I need assistance in putting the legs on but it works well colourwise.

Reading The Park Service which is a YA post-apocalypyoc novel about a 15 year old boy who discovers he's been lied to all his lofe.

Knitting: cotton socks in purple and blue. On the leg of the second sock.
Spinning: red and black wool which turns out kind of tweedy. Also finished spinning 50+ gms of camel down on my drop spindle and I plan on plying it on the espinner.

Next week is supposed to be in the 30sC which I really don't like but we might go down to the coast one day. I am fighting off a cold. I have a very sore throat and am coughing like crazy