tag:blogger.com,1999:blog-19591797758781193942024-03-13T07:53:32.668-05:00Mythology and MilkSusanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.comBlogger373125tag:blogger.com,1999:blog-1959179775878119394.post-47421973460229049122018-03-27T10:33:00.000-05:002018-04-15T10:56:22.333-05:00I'm still here...It's been a frustrating bit of one step forward two steps back and I'm just tired, tired, tired. I went back to work and I was really, really happy about it only to end up in the hospital one week after going back which of course makes me feel like a jackass and I want to say <i>I am not unreliable my body is unreliable but you can count on me </i>but of course my body and I are inseparable so what's the diff?!?<br />
<br />
So I have pyelonephritis with "inflammatory changes" to my kidney which is concerning but there is some confusion as to what's actually going on so who knows. I've had two kidney infections in the last four months and now I have shingles which also hurts like CRAZY but isn't a big deal just annoying, right? <br />
<br />
I want so badly to be healthy.<br />
<br />
I don't want to be in pain every day.<br />
<br />
Alas.<br />
<br />
This is how autoimmune diseases like Lupus work: you take a bunch of meds to quiet the disease and then you can't fight off infections so you're sick all the time anyway. What to dooooooo?!?<br />
<br />
I don't know, honestly.<br />
<br />
I should be back at work (again!) later this week. Hope I am strong enough to do this. I want to do this. I want to have a normal, active life. <br />
<br />
I want to work and write and travel and hang out with people I love because it all goes by so damn fast. I see my mom curled up in her wheelchair and I think about illness, old age and death. I wish I could make things better for her. I've been looking at old photos and thinking about what lively, vibrant people my parents were not so long ago. They weren't prepared for what was coming--a dementia diagnosis for both of them--but maybe that's for the best? <br />
<br />
If I get through this hard week I'm going to devote some days to writing. For Mom, for Dad, and for me. <br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-4965075382810026732018-01-20T10:26:00.001-06:002018-01-20T10:33:18.903-06:00When You are a Writer Who isn't WritingIt's been a quiet season, this period in my life defined by illness--both my own and that of my parents--and writing about anything has been a challenge. Words prove slippery, elusive, hard to grasp. I want to hibernate--to drink endless cups of fancy tea, binge watch Netflix, wrap myself in blankets and shut everything out. My dad passed away in November. His last few weeks were awful. <br />
<br />
As a part of reclaiming the life I loved before everything got hella complicated, I decided to challenge myself to make writing part of my daily practice again this year. <br />
<br />
The last four years have been an emotional shitstorm. I've spent more time Not Writing than Writing. Hopefully, the hiatus will be over this year. I'm ready to get back to it. But...where to begin? <br />
<br />
One of my goals is to read more, and to write more book reviews. It's a good starting place: to immerse yourself the work of others and support your peers by buying their books and sharing what you love about their work. <br />
<br />
I'm happy to see so many writers (myself included) getting back to their personal blogs, too. I find there's a depth to these blog entries that's lacking on social media. <br />
<br />
I'm feeling ready to write, edit, and submit work again. <br />
<br />
I'm grateful to my wonderful writer's group (shout out to No Crying in Poetry!) for keeping me from walking away from writing during this last, difficult year.<br />
<br />
I've missed it all so much.<br />
<br />
***<br />
<br />
<i>Dearest Darling Self,</i><br />
<i><br /></i>
<i>Welcome back! </i><br />
<i><br /></i>
<i>Welcome back to reading and writing.</i><br />
<i><br /></i>
<i>Welcome back to blogging and connecting.</i><br />
<i><br /></i>
<i>Welcome back to submission anxiety and rejection. ( It will be okay. I promise.)</i><br />
<i><br /></i>
<i>Welcome back to poetry.</i><br />
<i><br /></i>
<i>Welcome back to flash fiction and essay writing.</i><br />
<i><br /></i>
<i>Welcome back to blurbs and reviews.</i><br />
<i><br /></i>
<i>Welcome to a whole new season of being a writer. It might be very different from your previous experience. Your voice has changed. Your writing has changed. This is to be expected. </i><br />
<i><br /></i>
<i>Everything is going to be fine.</i><br />
<i><br /></i>
<i>Love,</i><br />
<i><br /></i>
<i>Susan</i><br />
<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com1tag:blogger.com,1999:blog-1959179775878119394.post-6399702564720137892017-08-16T09:52:00.000-05:002017-08-16T09:52:44.771-05:00Anxiety ModeA friend recently posted a really accurate description of his anxiety symptoms on Face-bot this week and it got me thinking about how those of us who suffer from daily anxiety experience the world differently from those who do not. My family cannot relate to the nausea I feel at the thought of dialing the phone, or the fear and panic I experience at the sound of a ringing doorbell. They think it's weird. Maybe it is. But it's still how I <i>feel</i>.<br />
<br />
It's not something I can control in terms of having this anxiety. Sure, I can make a phone call despite my fears (rational or irrational), but being functional doesn't mean I'm not dealing with something significant. And it's EVERY DAY.<br />
<br />
* I worry about my loved ones experiencing injury, illness or death all the time. If they aren't right in front of me, there's this ever-present thought that they might be hurt or dead right now but I just don't know it yet.<br />
<br />
* I really do love people, but the thought of interacting with anyone is really complex: I will probably embarrass myself, say something dumb, inadvertently offend. I dread it. Even a trip to a store or doctor's office is prefixed with this anxiety. The I DON'T WANT TO screaming inside my head that I must try to ignore. <br />
<br />
* Both of my parents have dementia and the responsibility for their care overwhelms me daily. They are in a Memory Care facility, but I visit often and take care of their bills, shopping, etc. I feel as though I am carrying a boulder that crushes me slowly. I want to do everything right and fear it's never quite enough. They have degenerative diseases and keep getting sicker no matter what we do. It's just so damn hard. <br />
<br />
* I am overwhelmed by the little things: the spiky weeds popping up in the front yard, the crack in the driveway, the groceries in the fridge that might spoil and be wasted if we don't consume them quickly enough. We went to Costco yesterday and now there is too much food in the house and it's actually freaking me out. <br />
<br />
* I am having intense, intense anxiety about my weight. It fluctuates (sometimes wildly) due to multiple chronic illnesses and it makes me feel as if the world is spinning out of control. I gained 25 lbs on high dose prednisone followed by a 50 lb weight loss due to digestive disease. I've now gained back ten of those 50 and I weigh myself every day to see if it's up or down and panic as it inches upward again. Oddly enough, I know this signifies that my illness is under control and I'm finally able to get enough nutrients, but because I know how much kinder the world is to women who are thin, it frightens me. I know that's royally fucked up. I used to be totally comfortable in my body, even when I was at my normal weight (about 20 lbs heavier than I am today). Not now. <br />
<br />
* I am not currently medicated for anxiety (although I have been in the past). I can still leave the house, make the phone call, appear functional to the outside world. But how do you control your wild thoughts, your pounding heart, the fear you carry with you always? I don't know. Maybe it's just a natural state for some of us. <br />
<br />
* The current political climate is beyond horrifying. I think even those of us who don't suffer from anxiety can relate to feeling that we are watching the world implode as hatred and cruelty become mainstream. I ask myself: what can I do to make things better? Am I doing enough? Crowds terrify me. But I want to help, to make the world a place where kindness and respect triumph over fear and hate. I think about this so much and often feel just helpless. <br />
<br />
***<br />
<br />
<br />
I vote and I support those who fight for a better world and I try to treat people with kindness and challenge hatred when I see it ( and yes, I have had some heated political arguments with people, even though it's difficult), but there must be so much more I could be doing. This haunts me.<br />
<br />
Is there power in practicing empathy, in being a good listener instead of just waiting for your turn to speak? Is it enough?<br />
<br />
All I can say, Anxiety Friends, is that I love and understand you. <br />
<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-91485772913200737002017-07-31T11:03:00.004-05:002017-07-31T11:05:23.076-05:00Hello again, blogI've been struggling to write, at least formally. <br />
<br />
Dealing with my parents' illness seems to have sapped all the (limited) energy I once had...<br />
<br />
TRUE CONFESSION: I don't want to see them sometimes. It's so painful. I try to go at least once a week to sit with them and bring them treats and necessities. The last few visits have been really awful. My dad barely responds to my presence. Now I just sit next to him in silence sometimes, because he doesn't talk very much, except to grumble about getting out of there. I don't think he knows me. I wish I could comfort him, but there's no way to reach him. I picture his brain, shrunken and clogged with amaloid plaques and neurofibrillary tangles, and wonder: how much worse is it going to get? <br />
<br />
With my mom, it's even more devastating: she's very, very delusional and while she will sit and talk to me, nothing she says makes much sense. Sometimes I think it's like she lives in a waking dream, forever lost in this hallucinatory world where she's being stalked by the devil and her children have morphed into cruel wizards or at other times are all lying dead in their coffins and my dad's face is melting and all the elderly residents in her facility are having wild riots and throwing chairs and her books have been subtly altered to mess with her head and her toothpaste has been poisoned. It's more exhausting than you can even comprehend.<br />
<br />
I would like to get back to writing poems again, but my head is not in the right place. I just want to shut down, check out, lose myself in books or binge-watching or sleep. I don't know if I will get back to any kind of creative work at this point. It just feels so unreachable. I tell myself this will pass, but I just don't know. Maybe it won't.<br />
<br />
So, I come here and write, because at least that's something, to journal, to get some thoughts down, to say <i>something</i>.<br />
<br />
I am, however, grateful for many things: my supportive husband and son, the medicines that have brought my own illness under control so I can function better, good books, good tea, a good night's sleep. <br />
<br />
Health-wise, I am okay. I just got (another!) cortisone shot for my right knee and I'm definitely walking better, although it took a while and seemed significantly more painful this time. I couldn't walk at all the next day and was almost in tears. My stomach is still screwy but functional enough to get by...I'm looking at some herbal supplements and a different digestive enzyme to see if that might help with my gastroparesis symptoms. I've got the vomiting under control, but still struggle with pain, nausea, and severe reflux. I've also been dealing with recurring ulcers on the roof of my mouth, which is minor but still sucks. <i>Salt water rinses all day long, yo! </i>I've been on Benlysta infusions for almost a year now. I believe it has really lessened my symptoms and my labs look much better, so that seems like a legit observation, yes?<br />
<br />
Okay my lovely blogstalkers! That's it for now.<br />
<br />
XO<br />
<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-79233022269653348212017-03-06T10:50:00.000-06:002017-03-06T10:50:28.589-06:00All Good Things, ReallyIt's amazing how leaving an unhealthy situation can change your life so dramatically. I feel so much better lately. I am excited to finally get back to work on some writing projects, to cook wonderful things, to be with all the people I love. <br />
<br />
Life with mom and dad is still heartbreaking, but you learn to love the small moments. Sometimes I see people their age who are healthy (able to care for themselves, travel, live independently) and it's hard not to make comparisons about quality of life. Dad doesn't speak very often and barely lifts his head. Mom has both physical and cognitive impairments that leave her unable to lift herself from a chair or even put on a pair of pants by herself. She believes there is a nemesis who steals her toothpaste and creates "fake" copies of her books to torment her. She believes she receives anonymous, threatening letters (memory care residents do not get mail). She believes my sister works at the nursing home but does not speak to her and that my brother (a lifelong bachelor) has a "secret" wife and baby he is keeping from her. I have to remind myself that while these things are not real, they are real TO HER.<br />
<br />
So, distraction is the best strategy. You cannot talk someone who is suffering from neurological impairment out of a delusion. Instead, you must change the subject. Talk about sitting outside during a bright blue and green spring day, about favorite places to go and favorite foods. I bake them cookies, which seems like a small thing, but it makes them so happy. Last week I even managed to corral them into a game of cards! Dad and I played as a "team" against Mom. We played War and he did flip over some cards for me and point to the images, especially the face cards--the Jacks, Queens and Kings. We "won" two hands and I asked him if we needed to play again to give Mom a chance to win and he said "Why not?" <br />
<br />
It was a really good day. <br />
<br />
I am cooking again! My stomach is still dysfunctional (once you have damage to your organs, that is pretty much that), but it works well enough not to need a feeding tube or TPN which is really, really fortunate. I am hoping that all my medication has my autoimmune diseases under control so there will be no more new and major issues. It's March already so I want to make Colcannon Soup and Irish Soda Bread and maybe a fancy Chocolate Guinness Cake! I have to be careful what I eat and how much but soup and bread remains a pretty safe bet! I've been taking digestive enzymes to help break up the food (Papaya extract). Ginger and Mint are also awesome for digestive troubles--I take them in teas and lozenges. <br />
<br />
Oddly enough, Probiotics make me super-sick. I think they contribute to bacterial overgrowth because I have dysmotility, but who knows? <br />
<br />
I am working on a book review and writing pieces for the manuscript that I am thawing out after letting it languish in cryostasis for a couple of years--heh! I miss being an active writer and poet. It's been harder than I expected to to make it a daily habit, but I'm getting there. <br />
<br />
<b>Listography:</b><br />
<br />
<b>Reading:</b> Just finished <i>Night Film</i> and <i>The Word Exchange </i>and I am currently reading <i>A History of Wolves</i> by Emily Fridlund which is so beautifully written it's kicking my ass.<br />
<br />
<b>Watching:</b> Season 2 of <i>The Magicians </i>and Season 2 of <i>Colony </i>and I am re-watching <i>Buffy</i> on Netflix because Why Not?<br />
<br />
<b>Cooking:</b> Mostly cookies and stir-fry noodles and brewing endless cups of fancy loose-leaf tea.<br />
<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-89774233175633942862017-03-03T14:55:00.000-06:002017-03-03T14:55:07.812-06:0045 and Still AliveSo, it's been a month since my last day of work already! Where does the time go? I turned 45 on February 17th and it was a really wonderful birthday. I am surrounded by people I love. I can walk (not for a super long time, but long enough), drive, and keep food down (so long as I am not foolish!) Life is never perfect, but I am so, so grateful right now. <br />
<br />
I am doing well, I think. I had a cortisone shot in my crazy bad leg on Tuesday and now that the soreness has (finally! after 3 days of ice packs!) gone away I see some improvement in my range of motion. I also had my IV Benlysta on Tuesday along with my shot. No changes to my medication. Still on Prednisone, but hoping to see the dosage continue to drop...<br />
<br />
Not waking up at 3 a.m. anymore has helped me tremendously. I feel almost-normal. <br />
<br />
I am happy.<br />
<br />
I am reading lots of books. I am writing again, albeit kind of slowwwwwwwly. That's okay though.<br />
<br />
I am cooking again, too. I baked some snickerdoodles for my mom. Of course there are fancy soups in the works and maybe a fabulous chocolate cake? Who knows? <br />
<br />
Aaaaaand I just dumped a glass of ice water on my poetry notebook, because some things never change! Off to dry my pages!!<br />
<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-23381481595983824512017-02-10T13:56:00.000-06:002017-02-10T13:56:02.291-06:00Sick life, quitting, and starting overEvery February I am sick, sick, sick. Meh.<br />
<br />
In addition to this crap cold my immune system (pissed off by this virus, I'm sure) is in overdrive and my joints are swollen and the roof of my mouth is covered with sores so I feel like garbage. <br />
<br />
Soooooo, at least I don't have to drag myself to work because I QUIT MY JOB, YO.<br />
<br />
My body couldn't take it anymore.<br />
<br />
It's not worth getting up in the middle of the night to start work at 4 or 5 a.m. limping and barfing and suffering from headaches and blurred vision and all that business. I realize I'm very lucky to be in a position to take some time off and get healthier. I plan to work on a couple of book projects while also doing everything I can to get as well as possible. I used to freelance before it became necessary to take a retail job for the reliable income and I'm hoping to get back to that, if I can.<br />
<br />
My last day was a week ago. I thought I might be sad but I am not sad at all just so, so relieved to be able to slow down a little. My first week at home wasn't very productive. My last couple of days of work were really, really rough with huge problems and extra work due to a number or issues with staffing problems and untrained people messing around with stuff they shouldn't touch. I was stuck there for 11 hours (I was supposed to be working short shifts) and this kind of thing was becoming a pattern. NOT OKAY. <br />
<br />
I couldn't walk for two days after that because my leg was so swollen and painful. This was followed by the sores and fevers/chills. After that, I got slammed with this monster cold. It is an endless cycle of pushing myself and collapsing. Hopefully, that's going to change.<br />
<br />
My main goals are to get healthier, spend more time with my mom and dad, and to write. <br />
<br />
For all my frustrations, I am doing better. Two years ago, Lupus attacked my heart and I was in the hospital where I contracted multiple infections, getting sicker and sicker. I developed fevers so high they reached 105 and my body would go into uncontrollable spasms. It was horrible. <br />
<br />
So this cold and minor flare? Kid stuff.<br />
<br />
Looking forward to better days!Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com1tag:blogger.com,1999:blog-1959179775878119394.post-17828769434880069292017-01-10T14:15:00.000-06:002017-01-10T15:30:45.110-06:00Another day, another moment: life with DadThe holidays rushed past me, like they always do.<br />
<br />
Since the onset of both of my parents' dementia everything has fundamentally changed. It is the hardest thing, I think, to lose who you are piece by piece.<br />
<br />
I am not writing much. It's all been so distracting--just life--taking care of everyone, including myself. I'd like to find a way to write about my parents in a manner that is respectful, but real.<br />
<br />
Dementia is an ugly disease. <br />
<br />
But there are still beautiful moments.<br />
<br />
They had a Christmas party at my parents' facility last month, with music and snacks and decorations. It was overwhelming for my dad and he was having a hard time when Mike and I arrived. <br />
<br />
He kept asking: "Can you get me out of here?" <br />
<br />
Sometimes it's so damn heartbreaking I don't know if I can take it anymore. <br />
<br />
It's strange because he often reacts to me as if I were a member of the staff instead of his daughter. I tried to hold his hand and he jerked it away, mumbling and angry. It was so HARD. <br />
<br />
My dad was a fine artist once. He painted landscapes and seascapes, the occasional still life. Dementia takes away your visual-spatial skills, as well as your short-term memory. He can no longer paint, but he loves looking at his old paintings. <br />
<br />
Mike actually went to his room during the party and brought back a painting for my dad to look at and it's amazing the difference it made in his mood and demeanor. "Well would you look at that?" he said, in a calmer, happier tone than we heard in weeks. "I thought they had all been lost."<br />
<br />
He even found his own signature at the bottom. <br />
<br />
Mike hung it up in his room and he sat at the foot of his bed and stared at it. <br />
<br />
"That's really something." he said.<br />
<br />
<br />
<br />
***<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuX0tqysvssXCCMxmQKIWg31N0iFRpUTIpFK0JevmGWiGl0x7Ni9tiHG0wnN9fRWGFWMfqlXIbRoWyQ6s_1E-tZo6XXCLfn7c7jhFvIyjzJ_44XsY8-Fbjb5fEsZxYsUXJZ-K4xNN0VgmY/s1600/dad.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuX0tqysvssXCCMxmQKIWg31N0iFRpUTIpFK0JevmGWiGl0x7Ni9tiHG0wnN9fRWGFWMfqlXIbRoWyQ6s_1E-tZo6XXCLfn7c7jhFvIyjzJ_44XsY8-Fbjb5fEsZxYsUXJZ-K4xNN0VgmY/s320/dad.jpg" width="320" /></a></div>
<br />
Dad also liked taking pictures with my phone!<br />
Once Mike got him cheered up by looking at his old artwork we got him to have some treats and take a photo with us. Getting him to smile is no easy task. This is one of my favorite moments from the holiday season.<br />
<br />
<br />
<br />
<br />
***<br />
<br />
<br />
<br />
I am learning to take things as they come. These are the lessons learned from a life with chronic / progressive illness. In some ways, caring for others has taught me to slow down and appreciate things: a smile, a laugh, a nice memory. I am so grateful for it. Even the worst days have worthwhile moments.<br />
<br />
<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com2tag:blogger.com,1999:blog-1959179775878119394.post-61979363786675486282016-11-11T17:22:00.000-06:002016-11-11T17:22:10.550-06:00This has been such a hard week for so many of us. <br />
<br />
I too, am heartsick.<br />
<br />
I want everyone to be safe in their bodies, in their skin.<br />
<br />
I want all relationships to be held sacred.<br />
<br />
I want everyone to have access to adequate and affordable health care.<br />
<br />
I want economic justice for all.<br />
<br />
I want to believe this is possible.<br />
<br />
I believe we can still wake up every day and fight for a better world, to protect the most vulnerable among us. It matters now more than ever.Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-20814993610303155502016-11-06T20:21:00.000-06:002016-11-06T20:25:36.649-06:00OVER IT<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5kKkU-10LrgamOG1TAcN0RrvHYzl6GRpywHHcDG1bzN0eIR4RrRybYxepWTpYJyjSJan4fppUsmGTZh_FX1FaRxmiTmeDSdni9erN64OVTTIAYxc1vtSvIj8z_4I2aN8qEwj7CpVfXZt8/s1600/Photo+on+11-6-16+at+6.21+PM.jpg" imageanchor="1"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5kKkU-10LrgamOG1TAcN0RrvHYzl6GRpywHHcDG1bzN0eIR4RrRybYxepWTpYJyjSJan4fppUsmGTZh_FX1FaRxmiTmeDSdni9erN64OVTTIAYxc1vtSvIj8z_4I2aN8qEwj7CpVfXZt8/s320/Photo+on+11-6-16+at+6.21+PM.jpg" width="320" /></a><br />
<br />
<b>Greetings from the Underworld.</b><br />
<br />
I'm tired. Tired of being exhausted. Tired of hurting. Tired of thinning hair, of my kitchen counter overflowing with meds, of rashy skin, of swollen joints, of chest pain, of lungs that feel like there's a brick sitting at the bottom of each of them. <br />
<br />
Seriously, I'm OVER IT.<br />
<br />
The unpredictable nature of autoimmune diseases is a major drag. It's the back and forth of it. One day, you feel sort of okay. You're functional. <br />
<br />
<i>(Of course, my definition of functional is pretty loose. If I go to work AND cook dinner I feel like a fucking badass. ) </i><br />
<br />
And then you wake up and can't get off the couch for more than ten minutes without feeling like you're going to fall down. <br />
<br />
<i>(I did NOTHING today. Like ZIP. I wanted to, but I could barely fucking move.) </i><br />
<br />
***<br />
<br />
Things are chaotic at work and I have to put in some extra hours due to a staffing situation and I have mixed feelings about it. But I'll push through it, like always. I wish I had more time to work on some writing projects. I feel like I'm finally getting back on track with my next batch of poems, but it's still going more slowly than I would like. <br />
<br />
Benlysta treatment #5 is this week! Things are far from perfect, but I do see a difference. It's definitely been the most effective thing we've tried so far.<br />
<br />
Not binge-watching anything particularly awesome, just random crap. <br />
<br />
In my dream life I write every day and cook beautiful things like risotto and red velvet cupcakes and my hair always looks good. <br />
<br />
<br />
<br />
<br />
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<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-49418745700274624352016-10-24T21:29:00.000-05:002016-10-24T21:32:34.155-05:00It's My Leg-O-Versary!Two years ago today my leg blew up to three times the normal size and it locked up in a straightened out position and I ended up in the ER with a monster elephant leg and they sent me home with an immobilizer and a shrug and some crutches and I didn't walk or drive or work for the next four months while bouncing back and forth between Orthopedists and Rheumatologists. My leg still sucks every day but I am working and driving and walking without a cane so that's cool.<br />
<br />
Happy Leg-O-Versary to me.Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com2tag:blogger.com,1999:blog-1959179775878119394.post-90344964599226523492016-10-17T09:29:00.000-05:002016-10-17T09:29:27.558-05:00Random ThingsTrying to get a few new poems or hybrid pieces written, but I have been a SLOW WRITER these days. Too much going on and my mind is everywhere: thinking about the cruelties of time and old age and poor health and about getting my messy-ass house in order and what to cook that I can eat without GI symptoms and getting to all the doctor's appointments and going to work and still having fun and getting enough sleep and maybe baking some bread. <br />
<br />
I have been looking over old blog entries and I realized that I am doing so much better than I was it's just that it happened so slowly... I am walking better and keeping food down and breathing okay so I am pretty good, yes? Each day is different and unpredictable as yesterday I felt like I could hardly stand up and needed to lay down for a couple of hours after my shower because I was so exhausted and I didn't have the energy to dry my hair or do anything but today I feel okay. So weird. <br />
<br />
This week I made some pumpkin muffins topped with coarse sugar (autumnal!) and I made a big pan of stuffed pasta shells for my guys because they both work lots of nights and come home hungry and those reheat beautifully and now I would like to bake some cookies and make a fresh pot of soup. <br />
<br />
I can (happily!) eat a muffin with no issues. Yay, muffins!<br />
<br />
I have even managed to cut back on the reflux meds which are correlated with all kinds of health problems like heart disease and kidney disease and dementia which is terrifying. <br />
<br />
I am watching season 5 of <i>Person of Interest</i> and this show is <i>so brilliant</i> why doesn't anybody I know watch this one??!?<br />
<br />
I have this dream life where I live in an isolated farm house and I keep chickens and I don't have to work retail and life is super peaceful and I read lots of books. In this dream life I write books and of course I could write books in my real life but one still has to have a regular job because writing books doesn't really pay all your bills but <i>OH</i> what a lovely idea. <br />
<br />
Everyone at work is sick and at least two of my bosses have walking pnuemonia and I am thinking about finally buying a filter mask and wearing it to work even if it makes me look batshit insane because <i>seriously, guys?!?</i><br />
<br />
Nobody stays home when they are sick instead they choose to be patient zero and infect us all and bring on the zombie apocalypse. <br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-72634113268708858922016-10-13T14:12:00.000-05:002016-10-14T13:16:11.250-05:00messes and whatnotFourth Benlysta treatment completed on Tuesday! So, I had a very sweet young nurse do my IV and it was a bloody mess. Blood was pouring out onto the tray and filling up the the IV and making a mess under the see-through bandage so she covered it with opaque band-aids and we both pretended it wasn't horrible. <br />
<br />
She kept wiping it up saying: "Don't look. Don't look!" It's funnier now that it's over.<br />
<br />
Good times.<br />
<br />
I ordered another dress with monsters on it because I have no self-control. <br />
<br />
This week's soup was Sweet Potato Bisque with Ginger! I make a mean soup.<br />
<br />
This week's insomnia binge-watch: Season 2 of iZombie. <br />
<br />
Going to try and taper off Prednisone again. I am hoping it goes MUCH BETTER now that I have been on Benlysta for a couple of months. So, so ready to be rid of my puffy face, etc.<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-45535152061193309452016-10-10T14:07:00.000-05:002016-10-10T14:07:18.827-05:00message in a ginger ale bottleSpending the day curled up with a mystery novel. Too tired to move, yet I feel restless. Working a 4 a.m. shift tomorrow (*dies*) followed by yet another doctor's appointment followed by an afternoon at the Infusion Center. I'd like to sleep for a month. Please send gingerbread and a heated blanket.<br />
<br />
xoSusanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-63989105917334471232016-10-07T16:05:00.002-05:002016-10-07T16:05:41.743-05:00bad days, darklingsMonster flare up this week. Shaky, exhausted and in a significant amount of pain. Ugh. <br />
<br />
Maybe the stress of moving my mom and dad triggered it? <br />
<br />
Taking a self-care day. I made a pot of fancy Irish Breakfast Tea and good toast with honey and I painted my toes a super goth shade of dark purple even though my hands are way too unsteady and I had to wipe off all the smears with 4 Q-tips. Thank the holy dog it's not a work day because I would be useless.<br />
<br />
Reading Elizabeth George's <i>A Banquet of Consequences </i>which has a Terrible Title but so far the book is quite good.<br />
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<b>Current Mood: </b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSH0HXHNjV4uwZJLgyu1i8PGcg5qwhKyWbcWFj65bSmrT_S7l8PLIfim-hLaFTggxTNEm4T0Os9LXFxVXgLjLw1j7FtcDBE-lUpCxRo9-H9jP_iwGpdf39btM5hfuL23jlwLiCcnUmiJ-O/s1600/11720052_10207278946837143_1017509992_n.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSH0HXHNjV4uwZJLgyu1i8PGcg5qwhKyWbcWFj65bSmrT_S7l8PLIfim-hLaFTggxTNEm4T0Os9LXFxVXgLjLw1j7FtcDBE-lUpCxRo9-H9jP_iwGpdf39btM5hfuL23jlwLiCcnUmiJ-O/s320/11720052_10207278946837143_1017509992_n.jpg" width="246" /></a>Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-44998684633463896862016-10-06T11:33:00.001-05:002016-10-06T11:40:54.526-05:00Flare days and life, such as it isAfter a couple of weeks of feeling pretty good, this last week has been kind of rough. Lots of joint pain and GI symptoms. Feeling exhausted and short of breath again today. Alas! I was beginning to hope this would be a thing of the past, but that was unrealistic. <br />
<br />
I pushed through today. Made it to work and made it through the day but it was such a relief to get home and rest! I wanted to do some writing, but I don't think I'm feeling it.<br />
<br />
I have my fourth Benlysta infusion next week. Maybe this will get me back on track? <br />
<br />
We're moving my parents to a closer facility and I am hopeful that I will be better able to keep an eye on things. It's stressful though. Perhaps the combination of that and the bad weather are kicking my ass this week. <br />
<br />
Spent last weekend in Wisconsin with my guys, which was lovely. I did have a tough time with not feeling well but I still enjoyed myself and it's always good to be with my family, even if I can't quite keep up. I found a little tea shop on a rainy day and bought some loose leaf tea and a new infuser mug in bright red which makes me super-happy! <br />
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<b>Reading:</b> Just finished Joe Hill's <i>The Fireman </i>because I love a good plague/apocalypse.<br />
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<b>Watching:</b> Season 5 of <i>Person of Interest, </i>American Horror Story Season 6: <i>Roanoke. </i>I also checked out the pilot episode of <i>Westworld</i> on HBO.<br />
<br />
<b>Cooking:</b> Not so much. Meh. I was on a bread baking kick earlier though. I made a pretty nice vegan sandwich bread with oatmeal and brown sugar. And baguettes! I might get back to my happy baking once I'm feeling a bit more energetic.<br />
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<b>Dreaming:</b> I dreamt I was at a poetry reading and a fight broke out between a gorilla and a chimpanzee. That is all.Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-25135114324332929282016-09-16T09:37:00.001-05:002016-09-16T09:37:17.007-05:00Fairy tales for Grown UpsOnce there was a woman who was really a crow, or perhaps a jackdaw. She knew where you hid your gold rings, your freshly baked bread. Darkling, darling, darkwing. On bad days, she was all beak: sharp and full of worms. What of avian games? The balancing of sticks and sliding down on slick branches? If she lost all her blue-black feathers, would she be trapped in human form? Her bones remain, simultaneously hollow and heavy. There is a story hidden in her joints and tendons, one of flight and lodestone and shiny red berries.<br />
<br />
She will never be content to carry your messages.<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-83563243651851881312016-09-08T13:25:00.001-05:002016-09-10T10:22:08.675-05:00VignetteThere is a certain scent to these places: warm juice, overheated rooms, baby powder and urine. I often see a woman--her back perfectly straight, her gait surprisingly solid, just a hint of shuffle. She carries a baby doll. She diapers and changes it in the corners of the hallways, on the tables and bookshelves. Sometimes she asks for help but cannot explain what kind of help she might need. There aren't very many men here. My dad is one the few. He is still tall and handsome at 76, but mildly disheveled. He often looks just a little bit lost. He used to love to dress for things: he had tartan vests, J. Peterman shirts, white wing tip shoes. Now he wears only athletic pants and t-shirts. They don't always match.<br />
<br />
"It's good to see you," he will say. Or sometimes (when I bring my husband) "look at all the people."<br />
<br />
He is afraid of mirrors. He believes there lurks within them an imposter. A man who looks like him, who follows him everywhere and steals his shoes. <br />
<br />
Once he took off his shoe and tried to beat his reflection with it, leaving herringbone track marks on the glass. He throws rabbit punches at his image, saying "I hate that guy."<br />
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My mother is hunched, her head parallel to the floor, circling the hallways with her walker. Muttering to herself that she's going to die. She's wearing a black blouse with tiny white pin-dots, black pants, clunky black maryjanes. It's hard to get used to, seeing her like this, her mind a flock of ravens, shattering into diaspora. <br />
<br />
"They leave me pictures of amputated fingers," she tells me.<br />
<br />
"Who?" I ask.<br />
<br />
"The STAFF!"<br />
<br />
"I'm pretty sure that's not happening." I tell her.<br />
<br />
"Your father believes me." she says.<br />
<br />
She has Parkinson's Disease, with psychosis and hallucinations.<br />
<br />
I see myself, or perhaps my sister, 30 years from now. We all have the same auburn hair, fair complexions, delicate bones, although their eyes are blue, and mine are hazel. I ask my sister: will we shrink like those folk dolls, made from dried apples? Will we cling so desperately to who we were that we can't be trusted on our own, believing we can drive our cars while blind, manage the bills and the checkbook when we can't remember what they mean? Will our minds change in some fundamental way, lewy bodies, amyloid plaques, the broken synapses a foregone conclusion, written in our genome, a countdown clock, ticking away?<br />
<br />
Sometimes I picture them when they were younger: Dad cooking a Thanksgiving turkey, Mom with her hair set in giant rollers to straighten it. They used to have cocktail parties, play bridge. They traveled to Europe, twice. My dad used to mow the lawn every week, until he began to believe he kept breaking the lawn mowers because he couldn't remember how they worked. We found four fully functioning mowers in the garage when we cleaned out their house. <br />
<br />
We found a drawer full of fingernail clippings.<br />
<br />
We found over a thousand twist ties--the green ones you get in the produce department at the supermarket--stashed all over the house.<br />
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We found cereal in the freezer.<br />
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We found bugs in the pantry and poison ivy all over the yard.<br />
<br />
We found ourselves completely unprepared for this.<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com2tag:blogger.com,1999:blog-1959179775878119394.post-74981200025111878832016-09-07T16:46:00.000-05:002016-09-07T16:46:08.843-05:00I spend most of today drinking gunpowder green tea and reading Louise Erdrich.<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-25203552477916179592016-09-03T15:27:00.001-05:002016-09-09T13:33:23.667-05:0099 ThingsI Love:<br />
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99. loose leaf tea<br />
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98. thunderstorms<br />
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97. swing dresses<br />
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96. heated blankets<br />
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95. covered porches<br />
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94. lemonade<br />
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93. bunnies<br />
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92. blue and white china<br />
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91. horror movies<br />
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90. red velvet cupcakes<br />
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89. silly cat memes<br />
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88. coloring books and colored pencils<br />
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87. red lipstick<br />
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86. evening walks<br />
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85. hot baths<br />
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84. lemon meringue pie<br />
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83. unexpected gifts<br />
<br />
82. romantic dinner dates<br />
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81. vintage cars<br />
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80. brand new notebooks and journals to write in<br />
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79. backyard cookouts<br />
<br />
78. christmas lights<br />
<br />
77. striped pajamas<br />
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76. novelty t-shirts<br />
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75. anything plaid<br />
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74. comfortable silences<br />
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73. days off<br />
<br />
72. sleeping in<br />
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71. diner breakfasts<br />
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70. solitude<br />
<br />
69. reading poetry<br />
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68. writing poetry<br />
<br />
67. going to the theater<br />
<br />
66. Alfred Hitchcock movies<br />
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65. clean bathrooms<br />
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64. making soup<br />
<br />
63. fireflies<br />
<br />
62. snowfall<br />
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61. science fiction<br />
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60. clean, folded laundry<br />
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59. lamplight<br />
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58. reading all day<br />
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57. dark chocolate<br />
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56. cara cara oranges<br />
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55. tarot cards<br />
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54. antique furniture<br />
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53. tiny houses<br />
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52. semi precious stones<br />
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51. teapots<br />
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50. birthdays<br />
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49. spaghetti dinners<br />
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48. good hair days<br />
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47. lavender scented skin creme<br />
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46. eyeliner<br />
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45. chai<br />
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44. old photographs<br />
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43. Nicolas Cage movies<br />
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42. getting packages in the mail<br />
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41. beautiful hats<br />
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40. airstream travel trailers<br />
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39. road trips<br />
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38. comfy reading chairs<br />
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37. mint green<br />
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36. old lockets<br />
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35. jeans that fit<br />
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34. flannel shirts<br />
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33. hibiscus flowers<br />
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32. swimming<br />
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31. porch sitting<br />
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30. caramel sundaes<br />
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29. hotel rooms<br />
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28. buttered noodles<br />
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27. museums<br />
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26. libraries<br />
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25. candles<br />
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24. Thanksgiving dinner<br />
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23. brand new sheets<br />
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22. stained glass<br />
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21. footed cake plates<br />
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20. the scent of vanilla<br />
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19. original artwork<br />
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18. brand new pens<br />
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17. roasted pears<br />
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16. lots of pillows<br />
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15. mystery novels<br />
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14. rocking chairs<br />
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13. 90's dance party!<br />
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12. robots<br />
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11. tall stacks of unread books<br />
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10. gingerbread<br />
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9. opals<br />
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8. cat's eye glasses<br />
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7. cardigan sweaters<br />
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6. old maps with sea monsters lurking in the oceans<br />
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5. afternoon naps<br />
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4. depression glass<br />
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3. skirts with pockets<br />
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2. messy updos<br />
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1. chocolate chip cookies topped with coarse salt<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-46878833342576524512016-08-30T10:12:00.000-05:002016-08-30T10:12:07.622-05:00*VENT*Sometimes I get really mad about my malfunctioning stomach though. I tried to eat some "regular" food (2 chicken strips) this weekend and made myself super-sick and miserable, so it's back to soup and tea and whatnot. I know I am lucky I can still take nutrition by mouth. I'm lucky I've avoided needing a feeding tube for gastroparesis. But.......it still pisses me off. I LOVE food. I want coffee. I want cocktails. I want to eat steak and fried chicken and bacon cheeseburgers. But, WHATEVER. Anyway, I am online window shopping for fancy loose-leaf teas, which is something I can still tolerate. <br />
<br />
*end tantrum*<br />
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I have my second Benlysta infusion today. The first one went just fine. No reaction, other than being extremely exhausted afterwards. I started the Reclast infusions as well. So far, no issues. <br />
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Still working a couple of super-early 4 a.m shift mornings every week, which makes me want to die.<br />
<br />
I am hopeful for better days.<br />
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***<br />
<br />
<b>Writing</b>: I am revising a few poems, having met with my writing/poetry group about a week ago. I am thinking about going back to some essay and short fiction writing as well. I miss it. <br />
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<b>Cooking</b>: August is drawing to a close! You know what this means, right? It's SOUP SEASON, motherfuckers. <i>Tortilla soup. Sweet potato soup with leeks. Vegetable orzo soup with lemon. Creamy tomato soup with basil and garlic toast. </i> Take that, broken stomach!<br />
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<b>Watching</b>: All the Nicolas Cage movies. Don't judge me too harshly, as watching my man Nic over-act is the best stress relief ever. Is he missing a tooth in <i>Moonstruc</i>k? Also: that wooden hand, heh.<br />
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I am still re-watching <i>Game of Thrones</i>. And searching Netflix for movies that might have dragons in them, because DRAGONS, amiright?<br />
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<b>Reading</b>: I am in the mood to revisit old favorites. I am re-reading <i>Alias Grace</i> by Margaret Atwood. I might also re-read <i>The Mists of Avalon</i>, which is my favorite book, ever.<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-29886543274972522072016-08-19T11:13:00.000-05:002016-08-19T11:17:03.513-05:00August is almost over and it smells like fall and rain already. <br />
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I am moving through life as quietly as possible, under trying circumstances. Both of my parents have dementia and are now in a Memory Care Facility, which has been very, very stressful. I am trying to make peace with all that comes along with such things. It's not easy.<br />
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It throws the whole family dynamic into such an uproar. Feels chaotic and sad and overwhelming, to say the least. It makes the future seem incredibly bleak.<br />
<br />
***<br />
<br />
I had my first loading dose of Benlysta this week, as well as my first Reclast infusion. This went well, with no major side effects other than drop-dead exhaustion lasting about two days. I do have some monster joint pain happening, with my leg flaring up, as well as intense shoulder pain and a stiff achy jaw that makes trying to chew rather unpleasant. I don't think this is related to the infusion. Probably just Rheumatic-Disease-Business-As-Usual. I am hopeful this will be the right treatment for me, but it will take several months to see if this is going to work. I dream of getting off Prednisone! Time will tell.<br />
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Gastroparesis symptoms are flaring up again, unfortunately. Had a cup of ginger tea for breakfast and <br />
I plan on getting my juicer going today. I think I need a couple of days back on the liquid diet to get my guts to calm the fuck down. I love food, but it doesn't love me back. Alas. <br />
<br />
I am still learning how to live in a body that doesn't work quite right. <br />
<br />
***<br />
<br />
I am re-watching <i>Game of Thrones</i> from the beginning because I find comfort in the familiarity of revisiting my favorite shows. <br />
<br />
***<br />
<br />
With the recent turn in the weather I feel like cooking, but my stomach is being a jerk. I think this calls for soup.<br />
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<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-23343200073148276772016-07-26T20:49:00.001-05:002016-07-26T20:49:40.356-05:00Fairy Tales for Grown-UpsRemember a time when you were a seal? Something slippery and mythical always signifies a dangerous woman. Or perhaps we are simply lost, looking for Iceland or Atlantis or those places on maps that are plagued with sea monsters. Tell me a story about when I was born. Tell me I am secret royalty, the lost princess with a power for telepathy and a scepter that holds multiple futures in its glass finial, the prophesies of rubies and magic and a storm of frogs and stones. Where is the happily-ever-after hidden? Will we find it buried under long dead oaks or boulders embedded with swords and snakes? I am the heroine of this story but I am also the villainess. Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-79855974930414161142016-07-14T20:32:00.004-05:002016-07-14T20:32:52.824-05:00Random UpdateHow does time pass so quickly? Summer is just rolling by...<br />
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Prednisone taper was a complete fail. Within two weeks I could not stand to put weight on my leg and had broken out in a wicked rash. So, I am stuck on steroids, for now. Drag. More medication changes ahead! Still working out some details, but I am hopeful that we will find a treatment that works without destroying my bones in the process. <br />
<br />
I just finished reading <i>All The Birds in the Sky</i> by Charlie Jane Anders, which I really enjoyed, because there are witches and talking animals and an Artificial Intelligence, so hell yeah.<br />
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I also re-read <i>The Alienist</i> because I have been in the mood to revisit things an I am now kind of obsessed with the time period because I just re-watched all three seasons of <i>Penny Dreadful,</i> which is so unbelievably good.<br />
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Also: my house is overrun with centipedes. I'm certain this is a troubling omen.<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0tag:blogger.com,1999:blog-1959179775878119394.post-19968006251913447252016-06-18T14:43:00.001-05:002016-06-18T14:43:54.136-05:00Block, writerly and otherwise.I don't know if anyone else has had such a long hiatus from writing regularly as I have, but it is so much harder to be creative once you are out of the habit. I have enough time to make this a part of the daily ritual, but sometimes the energy is just lacking. I am trying to read more for inspiration, and watch less television (which is, admittedly, my downfall). <br />
<br />
I did write a small piece today, although I am not crazy about it. Now to let it rest for a day or two and go back to revise.<br />
<br />
The house is quiet today. Everyone is out doing their thing and I was feeling the usual trifecta of pain, nausea and fatigue this morning so I took a pass on being out and about. Ninety degree weather doesn't help much, and a day in the sun is really just asking for a flare up. My leg is already stiffening up because we are tapering off prednisone again. It's like flipping a damn switch. I've already lost significant range of motion. It's a bummer.<br />
<br />
<b>Reading</b>: <i>City of Dark Magic</i> and <i>The Sisters Brothers</i><br />
<i><br /></i>
Yes, I often read more than one book at the same time.<br />
<br />
<b>Watching</b>: I just finished <i>Slasher</i> on Netflix. <br />
<br />
Otherwise, life remains as ordinary as ever.<br />
<br />Susanhttp://www.blogger.com/profile/08700838274754785164noreply@blogger.com0