Tag Archives: life

Better Enough

Things are getting back to normal-ish at my house. I can do dishes without dropping them, I’ve only needed my cane one morning this week, I can go up the stairs like a typical person (not down yet though, I’m still going sideways down the steps), and I can type. For five minutes at a stretch and half the speed I’m accustomed to. I’m hoping that, by NaNoWriMo (which I AM doing), the medicine I’m on will be working well enough to help me finally get the sequel to Hunter’s Crossing written and not languishing in a pile of notes, snippets, and scenes.

I ordered a thumb splint that I hope will be here in plenty of time to adjust to wearing it and typing with it. Most of my problem is in the left hand, thumb, wrist, and elbow. I’ve looked into thermoskin gloves, wrist warmers, and stabilizers. I’m pretty willing to try anything. I’ve looked into speech to text but I haven’t found one I like enough to use (plus I’m still trying to get over the whole talking to myself like an idiot thing – I write because I sound stupid when I speak dang it!).

I’m having some of those moments, I can feel the depression trying to say hello, trying to sneak in and take root. This isn’t an unusual thing. In fact, it happens pretty regularly but this year it’s compounded by the RA, the weight gain because I’m struggling to be active when moving hurts (and food is my blankie), and the general feeling of uselessness. Nothing has really worked to dig me out in the past so I’m trying something new. It seems silly but it’s not not working. I haven’t worn makeup for about two decades and, being a writer,  there’s not much call to get properly dressed every day, so I’m trying to do that too. I figure, if I’m going to be healthier than I’ve ever been (and I must be as I’ve seen ALL the doctors in the last few months lol), I might as well try and look it. I’m still not leaving the house too much so no one really gets to see it but, strangely, it’s making a difference anyway.

I got tagged in those pretty picture things on FB by a bunch of ladies. I won’t do them as I haven’t taken a picture I like in more than a decade but they partially inspired the whole trying to look like a functional person thing. For years, I’ve extolled the value of fake it till you make it but I don’t always follow my own advise. I’m trying to. I’ve joined a few groups – one focusing on getting healthy and an RA support group – and I like both of them a great deal. This year has been one of the worst I’ve had but that doesn’t mean I can’t make something good come from it before it’s done.

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Filed under Life, Rheumatoid Arthritis, Weird, Writing

Well, OK then

I didn’t get much in the way of words down yesterday but I did get some background work and some research done for Hunter’s Hell (working title for Lei and Blake’s second story). I’m really probably too pleased with some of the ideas I’ve been having for it and I know not all of them will make it into this book but hopefully, there will be more stories to tell when it’s done. Yesterday, my hands were really sore. Today is better but today is also errands day so I’m probably not going to get much done outside my head.

I don’t know if side effects tend to show up 30 hours after taking methotrexate but it looks like that’s what happens with me (at least on the first dose). It wasn’t too bad just a headache and some general stomach upset. Yay Pepto and Yay sleep, even if I’m not sleeping well. If this stuff makes the hurting finally stop, a little weekly headache is more than worth it. Now I just have to hope that next week is as kind to me. I know it’s going to take a while before this stuff starts doing what it’s supposed to do and I’m  on oral prednisone until then which I really don’t like but it is what it is. I do need to pick up a cane today as I’ve been using my late father’s and there’s a bit of a wiggle in the handle and it belongs to my oldest son and I don’t want to break it. Hopefully I won’t need it much longer but my ankles and knees and feet just aren’t always sturdy, especially when I’m first standing up after sitting for a bit and I don’t really know what it will be like in a month or a year but, like my crutches, it can’t hurt to have a cane I can use laying around.

I found an online support group that seems interesting and, thankfully, science based! – though I feel a little guilty as I haven’t had the fight so many have had in getting my diagnosis. Not that my body was going to let anyone argue with all the crazy swelling moving around. I think it would have taken a lot longer if I hadn’t reached a place where my hands were so swollen they couldn’t move only about a week after my feet did the same thing. I feel a little guilty that I don’t have it quite as bad as some – it’s sort of like my son’s autism. I always feel a bit guilty because I’m not dealing with the severity that some families deal with. I know how fortunate I am, we are, in all the things.

 

 

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Filed under Life, Rheumatoid Arthritis

Under the influence of Dune

I’ve read the book a few times. The first time, I was too young and a lot went over my head. Really, you just don’t have the life experience at eleven or twelve to really take in all of it. The second time around was a deeper, more in depth understanding. The third, yet again. I feel I’m likely about to read it again.

For years, my go to when I’m having a panic attack has been to recite the litany against fear. It’s not infallible but it does often take me out of my own head enough to at least lessen things. Now, with everything going on, it’s a very different part of Dune that seems to be taking root. My whole body seems like it is becoming a pain box. I don’t know who’s holding the gom jabbar but I swear, I’m human and we can be done now.

Fortunately, I’m now only a week away from my first appointment with a rheumatologist so we can start getting to the bottom of things, at least officially. I’ve learned a lot over the last almost two months though, about myself, my family medical history, and about the most likely culprits of all this nonsense. I also learned that ibuprofen makes me rashy. Yay me. I’m not too worried about long term prognosis really. I know the likely suspect is rheumatoid arthritis and I know that it isn’t as scary as it used to be. Medicine is an interesting and wonderful field and I have great doctors, I’m just really ready to have an official name and a treatment plan. At least then, I’m doing something more than trying to do some yoga poses or just muscle through like I should do.

Currently, I’ve got a nasty little end of summer cold to boot so, with the kids back in school, I’m curling up with my warm puppies and getting some sleep and trying to kick this stupid sniffly, drippy bit away so I can get back to just being hurty. One thing at a time please, silly body. Perhaps I’ll dig out the movie tomorrow and give it a watch. I could watch the Kyle MacLachlan version a hundred times. (And yes, it is very different but there is a place for both book Dune and that movie Dune in my life).

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Filed under Books, Health, Life

When it rains

I’m not getting much in the way of writing done, though I did have a great typing day the other day. I’m learning a lot through my research and coming up on a lot of frustrating things. The 31st can’t get here soon enough. That’s when I see the rheumatologist. On the upside, I found another doctor who gave me a clean bill of health for their specialty – and we ruled out any problems with my veins too. But, where there is an up, there’s a down. I’ve developed a rash. It looks a lot like the dermatitis I get when my skin is allergic to something stupid like aloe or various fragrances but there’s a real chance it’s related to all the ibuprofen I’ve taken in the last month. I’m currently doing an elimination test and for the first time in my life, I’m really hoping I’m still itchy in a few days. I’m already feeling the difference a bit and I was certain that the ibuprofen wasn’t doing much. I was wrong.

I feel bad because I can’t do the things I’m used to doing around the house and in general. It is what it is and one of these days I’ll get it all figured out and we’ll get it under control and life can find a new normal that includes being able to do the things I need to do.

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So far, So Good

So far today, I’m having a pretty good day, physically. Which is really nice and a bit of an outlier event over the last month and a bit. I’m certainly not going to complain and hopefully take advantage of it! It looks like today might be a real writing day!

This past weekend I did another local event and it went pretty well, even if I did move like a geriatric snail. I may even have to get more books in before my October and November events. You can’t really ask for better than that. I’ve been quite surprised by how much fun I’ve had doing them – I’m sure it helps that my oldest child has been super helpful being my minion for these festivals and fairs. It won’t be too much longer before he’ll be off on his own adventures so I think I’ll enjoy his help while I can.

Next year maybe I’ll be in a place where I can do some bigger events that aren’t maybe as local but certainly might be a little more targeted to readers. That’s the goal anyway. Now I’m going to go write while all the joints are feeling loose and limber enough to type properly.

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Filed under Event, Life

Updates All Around

Set up at the Italian Festival!

I had another craft fair this past weekend and I sold a few more books which is always nice and met some very interesting people. I have to admit, I am enjoying the craft fairs more than I thought I would, even with all the other issues I’ve got going on right now. Which are much more plentiful than I’d like, for sure.

I have another craft fair coming up on August 12th also and that should be both busy and fun. I honestly never thought I’d be looking forward to events like this – it’s been a very long time since I was comfortable peopling this much so I guess I’m getting somewhere after all these years. I’m not ready for Steel City or Parsec just yet but maybe soon! (ish)

Fabric sculpture Ragamuffin is up at Nesting Dragon.

I put up a bunch of new stuff over at Nesting Dragon – I’m really enjoying the fabric sculptures. I think the Nazgul and Shadow are my favorites (Shadow is all mine and not for sale lol) but I’m branching out a bit and I’ve got some ideas… Hopefully, I’ll manage to get one done before the Peach Festival and see how it plays.

On the health front, this month has been one long round of why do I hurt. It started with the left knee, when through the feet (with cellulitis of all things), through the ankles, the other knee, and then the wrists and hands. I’ve had x-rays, blood work,  more ibuprofen than I’ve taken in my entire life leading up to this (maybe an exaggeration…), and a whole lot of questions. The only thing I know for sure is that I have some arthritis in one knee, stupid tiny veins, and a predilection for bruising. I had yet another appointment today with the orthopedic guy and I walked out with some probably nots, a script for more bloodwork, and a referral for yet another guy. It’s really a frustrating process and I’m not actually getting solid answers, just suggestions. But we think fibromyalgia is ruled out at least so that’s something. Now I have to visit a rheumatologist and we’ll play another round of a million questions. Honestly, rheumatoid arthritis would make sense with everything but I’m not calling it until a doctor does. As of now, it’s just one possible answer. The words don’t matter so much as having a plan of attack. That’s what’s bothering me the most – not having a solid plan of attack beyond try to weigh less. In the mean time, I’m just muddling through and playing with speech to text software because typing a lot hurts (I’ve split this post into three sittings as it is).

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Filed under Books, Crafting, etsy, Event, Health, Life

Upcoming events and other things

I’ve got four events coming up, three local in person things where I’ll have my books and some of the things I make and one online Facebook party sort of thing where I’ll be giving away a book and maybe something special. The more I do these real world sort of events, the better I get at them. I’m not quite ready for the big events yet but I’m getting there. One of these days I shall get myself to Parsec and Steel City. Then I’ll think about the not so local – when my youngest is a little older also.

In July, I’ll be at the Follansbee Den on the 6th for lady’s night from 7-9pm and participating in a Facebook party on the 19th. My slot is scheduled for 6:30pm and I’ll have presents for some lucky individual. I’ll have more information on both of them as we get a little closer.

I haven’t been writing as much as I want because I’ve done something to my right arm and it hurts and by the time I’m done doing my “day” job, typing my own stuff doesn’t work so well. It’s slowly getting better and I probably just pulled something but it’s seriously annoying when I have things I want to get finished!

Gods of the Fallen is coming along really well. I’ve basically got my outline draft done – it’s certainly not readable. It’s basically a very loose sketch of how the story is going to work. There’s a lot that the draft is missing of course but this is the closest I’ll ever get to doing an outline of any kind. I don’t count this as an outline because it’s a series of the important scenes that I have to tie together and smooth out. It does give me a path of sorts to follow but I’ll veer off it likely as not in the rewrites.

Getting ready for the local events, I’m making more stuff that might fit a little better in the place where I live – less artsy and more functional but not a bit boring. It’s a little more difficult to work in the summer with all the kids wanting to go places, do things, see people. I should have worked harder to raise hermits (not really, it’s good that they don’t want to be like their mother in that regard).

Yesterday was a little rough. It was the first father’s day without him. It just sort of felt like a wrong thing for me. But, it is what it is and I’ve just got to get used to it.

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Filed under Convention, Crafting, WIP, Writing

Trying to get back to things

I’m finding it very difficult to get back into my routine, into the swing of things. For the last several years, it was not unusual to get a text or three during the week to see how many words I’ve written, what projects I was working on. As much as it might have been a little frustrating because when I’m rolling, I’m rolling pretty quick. I appreciated the fact that he was interested.

He was pretty much my only cheerleader. I have other supportive people but most of them don’t read and especially don’t read the genres I write. He didn’t read fiction much until he started being my first reader. He is, was, the only person who has read all of my books, all of my stories.

I’m not exactly sure what I’m supposed to do now. He was my sounding board and my fact checker. I have all of these suddenly open positions and no applicants to fill them. Nor would I really want to right now, they wouldn’t stick a random “d” in the word genre or lecture me on the proper naming genders in Russian families or ramble about whatever crazy random bit of information that is absolutely integral to whatever story I’m editing.

I’m not very good at this grieving thing. I get all the steps mixed up and somehow there seem to be more of them in my stairway. Funnily enough, acceptance seems pretty low on the climb, just after blank and before irrational what-ifs. I know everyone is different but I’m a wallower. Not really in my grief, because the actual grief part is mostly done-ish, but in my memories. Certain things become so intrinsically tied to a person that you can’t do them, go there, see that without thinking of them.

I’m trying to get myself put back together and there will be brighter, shinier, happier things here soon and eventually there will be new words. I don’t quite know what to do with them now but I’ll figure it out. I was writing before he took an active interest (before I started taking it seriously) and I’ll write again soon – other than poetry which is just coming to me faster, muddier, and sloppier than usual. I’m just going to have to restructure my rituals now.

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Sometimes People Suck

I wish I had not gone on Facebook instead of adding a few more words to Crow Queen. I wish I hadn’t been struck by my own stupid curiosity to see what made one of the writers I admire and respect so totally pissed off. Alas, I did. Now I’m going to share my pissed off, Jim Hines‘s pissed off, and some outside observer’s absolute idiocy. Because this woman who wrote this thing has NO CLUE about what she writes.

Actually, Hines sums it up better than I can. Read his response to a terrible woman who has no clue here. (and this way, I don’t have to link to the actual article! Bonus for me!)

I just want to add that I have children, one of whom is officially autistic and currently struggling to define what that is for himself. He comes home from school and tells me that autism isn’t an illness which tells me that someone at school is telling him that it is. He is working on finding stims that don’t scare the new puppy or make other kids stare. He is learning to speak and act neurotypical because he wants to. I’m of two minds on that – on one hand, he is awesome but on the other, like speaking French in Paris, speaking NT certainly will help him in life.

My situation is not terrible, in fact, my life is pretty freaking awesome. My kids are a large part of why that is. We learn to work around things, find different ways to get to the same place, and help my son navigate a world with people like this horrible woman in it. Maybe sometimes we have to take the longer or rockier path but who doesn’t sometimes?

I have been told, more than once, that my kid isn’t autistic enough for me to understand what other people go through. They’re sort of right, I guess. His autism presents in a manner that I can understand and even translate. I know how lucky we are for that. I also know that Carly Fleischmann found her own way. Naoki Higashida found his own way. Others find their own ways of communicating all the time. Different is not less. I think some people need to fall down off their very high rocking horse (because it isn’t a real horse when you aren’t actually personally involved in the situation).

Now I’m going to get back to the words I need to write today.

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Filed under Autism, Life, Parenting

Progress

This is a non-writing related post for the most part. It does relate to writing in that I’m not getting as much done right now as I’d like but that will change with school coming back and my working to get this new routine down. I’ve blogged before over the years about my issues with my weight and, while I am trying to just be happy with my shape and myself, I am also trying really hard to get into a shape that isn’t this one.

I’m not looking for advice, just sharing my progress because I want to brag a little. I’m really happy with the progress I’ve made just using the myfitnesspal app and the Pokemon Go app. For me, being accountable for the calories (and getting on the stationary bike or going for a walk when I want to have cake not cutting out cake), is working incredibly well. As long as my final number is green I’m a happy girl. I know I’ll hit a plateau eventually but I’m trying to get this done before I hit the age where it becomes super difficult to take any weight off. When I went to my doctor, I was looking at a very daunting 80 pounds to lose.

I started 87 days ago (I know only because the app keeps track of this stuff for me) and, if my scale didn’t lie to me today, I’m down 26 pounds so far. It doesn’t hurt that we’re walking a mile and half every day (73km so far!) and that I’ve traded my regular chair for a stability ball but the biggest difference is just that I’m being smarter about my food choices – I don’t feel hungry or deprived at all. This is important as it keeps me going instead of frying myself up some beignets. The best part is that I’m not doing anything unusual – honestly, with the Pokemon Go app, I’m not doing anything I wouldn’t be doing anyway — gotta hatch those eggs, after all.

I’m not noticing any differences, nothing seems like it’s fitting differently or anything yet. But, if I keep going at the rate I’m going right now, I’ll be at my personal goal sometime in March (allowing some off time around christmas because I am an excellent baker). We’ll see. There will be no before pictures but I am looking forward to updating my author pic at some point.

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Filed under Health, Life