Tag Archives: Rheumatoid Arthritis

It’s that time of year

I love this season. I don’t get as much writing done until after the last of Christmas is done but I am one busy lady right about now. I’m doing my annual Make Things rush for holiday gifts. For some people, it’s the gift itself that is their love language.  For me, it matters that I make something. Last year, I didn’t do so hot – only for the kids and those weren’t up to my personal standards. This year I have some really great ideas that so far aren’t working out exactly (or remotely) as I expected but what are plans for but to change?

I didn’t manage to win NaNoWriMo this year but that’s ok. I have the start of a story that might be something interesting someday and I had some commitments to meet that I met. There’s always next year and, honestly, I don’t really need NaNo to write a draft anymore and I’m not really active in that community either. If I were, that might be draw enough but, we’ll cross that bridge next October.

On the health and RA front: I’m starting to struggle a little. I’m sure some of it is the weather, some of it is the crafty stuff or the typing but my fingers and feet are not doing so well. I expect some changes at my next appointment in very early January so long as I can get through to January without wicked swelling or ridiculousness. It’s not pain as much as it is a deep, moaning ache that haunts my hands and tries hard to make me miserable. But, I have too many things to make to let a little thing like pain or stiffness get in the way.

RedDog and Fred

Speaking of health crap – we discovered something interesting about RedDog – did you know that dogs can have underactive thyroids? They can and ours does. He’s acting more like his old obnoxious, velcro, cat-dog self than he has in YEARS because of the new daily medication. It’s actually really wonderful (even if it also hurts as he wants to sit ON me and produces his own gravity).

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Filed under Life, Rheumatoid Arthritis

Better Living Through Chemistry

This time last year, I struggled to get around without my cane or crutches. Yesterday, for the first time in a little more than a year, I went down the steps like a normal person and not turned to the side, step together, step together all the way to the bottom. To be perfectly honest, at my last rheumy appointment, I wasn’t really very pleased as he just upped my meds one more time instead of adding something. Apparently, 2.5 mg really can make a difference. I have a few new side effect type things but it’s certainly nothing intolerable (well, depending on the results of tomorrow’s bloodwork anyway). If this continues, I might actually start being able to move enough to actually lose weight!

It’s been a journey and it’s still not done. I’ve been very fortunate in this journey as I haven’t had many people treat me poorly or not listen to me. I know some people in one of my support groups had to fight tooth and nail for their doctors to listen to them. I’m still having some short term memory issues but my rheumy acts like no other RA patients complain of that when I see a lot of those complaints in my support groups. I’m interested to see what my GP has to say about it next week actually. The memory thing and the change in my sense of smell for that matter. But, this check-up will go much more smoothly than the last one!

Honestly, I’m nearly typing at my proper speed again. I can paint and create things again. My hands get tired faster but it’s not like it was and I bounce back pretty good the next day when I’ve overdone it. If we’d up’ed my meds before we went camping, we might have gotten to do the cemeteries and a good chunk more of the freedom trail in New England. Maybe next time!

I have a lot of crunchy type friends who are distrustful of the medical and scientific community for a variety of reasons and the like but I can’t afford to be that way. I would love to be crunchy, and I am about some things, I use reusable grocery bags, we recycle, I love all natural soaps and perfumes and aromatherapy. I don’t necessarily want to live off grid (I need my internet) and we vaccinate and I’m taking some pretty icky meds every week so I can’t be considered really truly crunchy. Without my chemicals, I honestly can’t walk without assistance or type or do any of the things I love to do so I will forever be an advocate for science and the amazing things that medicine can do. ❤

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Many Projects vs One Project

For years, I’ve had multiple projects going on at once. When I’m working, I usually have a main project, a secondary project, and occasional short stories and poetry. Recently, I’ve been having trouble with my memory. On top of the “brain fog” already associated with the disease, I’ve attributed the short-term memory problems to my medication. Though the rheumatologist says no, the Johns Hopkins Arthritis Center says it hasn’t been studied enough but there is a good bit of anecdotal evidence. Still, probably going to talk it over with my regular doctor next time I see her. And I was just bumped up to the max dose too. I’m finding that, with my new limits, I’m having to restructure my process. One project at a time.

It’s frustrating to me as I’m really accustomed to being able to flip back and forth at will except in November where I’m more interested in hammering out a solid zero draft in 30 days than I am in getting anything else done. I don’t feel like I’m getting as much done and I already feel like there’s no way to be able to tell all the stories in my head in this lifetime and new stories keep showing up in there! My actual productive word count is still down from my normal count, or what was my normal. But I’m definitely getting closer. Honestly, I’m just glad I can type right again! It’s still a little bit slower but it is what it is.

Yesterday I did a read through of the zero draft of Hunter’s Hell and the first portion of the first draft where I stopped everything to get Christmas in Bear Ridge written. I like where it’s at and I don’t think it’ll take me too terribly long to finish it. Maybe I’ll even get it done by November and get myself a new zero draft of something altogether different. I’ll just have to stay working one at a time for a while. Part of me is a little sad because I have so many shiny new ideas waiting but maybe, doing this, I’ll find I get more done. Here’s hoping anyway.

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June Wrap Up, July Goals

Niagara Falls from the American side (image: Sarah Wagner)

Another month has come to an end… This year just keeps on moving along. June was pretty good overall. It’s been just about the busiest month I’ve had in a very long time and I managed to do almost all of the things. I got the beta draft of Christmas in Bear Ridge finished and off to two quick readers while I muscle through polishing edits and description fluffing. My only real goal is to get Bear Ridge sent off to the editor. Once that’s done, I’ll happily get back to Hunter’s Hell and Gods of the Fallen and Eldercynne Knight. All of them are needing to get themselves finished.

In June, I wrote 23,037 words, completed the beta draft of Christmas in Bear Ridge, went camping in New England, I sent 0 submissions out, got two rejections in, wrote up four Face Off Recaps for the four episodes that have run so far (still my favorite game show on TV), cleaned and organized the youngest child’s room, and somehow only lost 1.5 pounds. That last one makes me so stinking mad. I’ve been doing better on not eating a bunch of stupid stuff, moving more, walked SO much of the freedom trail my whole body is still hurting, and I only lost 1.5 pounds. ugh. I do know it was probably all the sitting during all the driving (1400+ miles) and things like crabcake blts (omg, seriously. Amazing!).

July should have a bigger word count, once I get my edits finished but I don’t know how long that is going to take. I’m going to hope for as many words as June and far less missed days but since I don’t think we’re headed to another campground this month, I should be ahead of the game on that. Mostly, I’ll be happy if I can manage that, a revamp of the etsy shop, AND actually lose 5 pounds.

Mid-month, I have an appointment with the rheumatologist. It’s looking like he’s probably going to end up messing with the medications. I’m in a much better place than I was last year at this time but my bloodwork isn’t showing it so much and I’m still struggling at the end of more days than I’d like. Hopefully, shifting that around will help eliminate my crazy short-term memory problems and maybe even get one with a side effect that’s beneficial, like weight loss (fingers crossed all the ways). If nothing changes at all, I’m still in a place that’s much more liveable than it could be so I’ll make the best of it.

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Camping in New England

Big Agnes Big House 6 Tent

The last few days, I’ve been away. I’ve been camping of all things. There’s a lot I want to unpack about that. Camping is not something I actively enjoy but it is something I will do if it means I get to see the ocean or go places that I love. It is one of the things my husband likes to do on purpose, just for camping. This year it was a bit different than it’s been in the past as there were more things to take into consideration, mostly my rheumatoid arthritis.

I struggle to get up off the floor so sleeping on the ground wasn’t really going to work for me which meant we had to get a cot. Getting a cot meant we needed a bigger tent. Thank goodness for REI’s garage sale! We got a great deal on the Big Agnes Big House 6 which fit the four of us with two cots (and two people over 6 foot tall) very comfortably. I slept in a sleeping bag, on a yoga mat, on a cot and when I had the right temperature bag, it wasn’t horrible. It wasn’t sleeping in my bed but it was definitely workable for a few nights.

The American side of Niagara Falls was interesting and beautiful and crowded. Our first campground was in New York. Mostly an RV park where people must come pretty regularly for the season. One RV was even getting a newspaper delivered if the post outside was any indication. It was really cute and well maintained though. After that, we headed off to Winter Island Park in Salem, Ma. If you’re reading this, I really need you to buy my books and have your friends do the same. I want to retire in Salem. Maybe open a bookstore or just write more books. I love it there. It feels like I could belong there. It’s marvelous up there. And I’ve never seen a more dog-friendly city in my life! There were bowls of water out on the sidewalks, every fourth person had a dog with them (and my oldest took pictures of ALL OF THEM).

Moray Eel at Boston Aquarium

We hopped down to Boston and did part of the Freedom Trail. I could not manage to do the whole thing. If you have mobility issues – do yourself a favor and get the trolley tour. Walking it is very hard and those cobbles are beautiful but hard on the feet and joints. We did the Aquarium first and then Faneuil Hall (both the market and the museum portion) before heading to the Old North Church. We finished off at the USS Constitution which was super neat. We had some great food – bacon wrapped scallops, fried calamari, crab cake BLTs (seriously!). We had some terrible coffee – instant Starbucks isn’t any better than regular Starbucks, somehow they make everything taste burnt to me! but the Alpine instant stuff from REI really wasn’t bad.

I bought less than I expected and certainly less of the sorts of things I expected. I did find a Funko Ludo and I love him so the marvelous husband bought him for me. And a silver raven skull necklace. I’m having a thing for corvids right now – especially ravens and crows. Perhaps I’m in transition, perhaps they’re being my muse. Whatever, it’s a thing in my life right now so it made it all the more special.

Winter island lighthouse

We also went through the House of Seven Gables. Let me tell you, there has never been a face so full of joy and wonder as my oldest son’s when they opened up that particular staircase. I live for moments like that. Oldest child had some preconceived notions of some things and was mostly using Fallout for his touchstone but it’s pretty interesting watching the kids learn stuff. The youngest child wasn’t really interested in that part but maybe someday he’ll figure it out. It’s not like he’s going to forget any time soon.

We drove through our old stomping grounds in part so the oldest boy could take a look at Wesleyan in Connecticut and in part because it’s quite the walk down memory lane for us. We even made it to our first apartment building. I definitely wouldn’t mind if the boy ended up in New England. It’d be a great excuse to visit.

 

 

 

Young Komodo Dragon at Clyde Peeling’s Reptiland

Coming home, we stopped at Clyde Peeling’s Reptiland. It’s a really cute but very small zoo devoted to reptiles. They have two – TWO – young Komodo dragons which just so happen to be my husband’s favorite things ever. Pretty sure he feels about them the way I do about octopus and ravens. We had a good time until the birds (where my husband and oldest son proved that they might just be Disney Princesses). My youngest son is autistic and tends to be quite literal. People kept trying to hand him seed sticks to feed the birds and he’d get mad because he thought they were trying to feed him and he’s not a bird (he also doesn’t really like to touch animals that aren’t his critters so much). I’m used to explaining to him when he misunderstands. I’m used to explaining to other people when he misunderstands. I am not used to strange women grabbing me by the shoulders and explaining, very forcefully, that they understand. My brain completely blanked and all I could say was thank you. I appreciate the sentiment greatly (especially the day after) but really, I’m not a fan of people in my space bubble and I’m especially not happy when people are touching me. I don’t know how she wanted me to respond but I don’t think I did it right, I sort of fled. Ok, not sort of, I did flee. Youngest kid and I went out to the gift shop while the other two were playing with parakeets.

Winter Island Park

The most annoying part of the trip though is the fact that we did ALL that walking, none of the snacking, and I managed somehow to stay the exact same weight. That’s some real BS right there. Sure some of what we ate, especially on the way home, wasn’t maybe the best for weight loss but still, I really thought there’d be some drop. And I still have to do all the laundry.

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Filed under Anxiety, Autism, Fun, Interesting, kids, Life, marriage, Memories, Parenting, photography, Rheumatoid Arthritis

Knowing Enough to Know I Don’t Know Enough

Flowers in the Woods (image: Sarah Wagner)

Yet.

I posted before about getting back into photography as a way to get my artsy fix without making quite the mess I make doing other things – like painting or building strange things out of fabric, starch, plaster, and glue. Well, very quickly I discovered that film is going to be a LOT more expensive in the long run than is really worth it for me and I had a little money left over from my birthday. Bargain and thrift hunting is a thing I thoroughly enjoy and I managed to find a very old first generation dslr dirt cheap. I went Pentax because my best lenses all work with Pentax. Transitioning from a Pentax k1000 to a k100d is a lot more difficult than I imagined it would be. Figuring out the lighting has been the worst and I really think a lot of that is because I wasn’t the very best at lighting to start with. It also seems that I have been using one of my lenses wrong pretty much forever.

I know enough to play with it and enough to know what it is I need to get better at. And enough to know that I need to find an adapter to make my dad’s Nikon lenses fit this camera body and the right adapter to make my longer zoom fit this body as well.

All the Ferns but none were red. (image: Sarah Wagner)

I prefer subjects related to or at least in nature and my backyard is really pretty uninteresting so I convinced the husband and kids to go with me to the local state park to hike around and let me find interesting subjects. I was pretty worried about how the body would deal with that – I’ve been doing really well lately but I know when I come back from conventions, I’m all over achy and sore. You reach a point where, in weighing the options, the reward with worth the risk. In this case, the reward was practice and pretty ferns. I got to explain to my oldest all about fiddleheads. Only one tiny shoot was still curled that way in the plants that were close to us. Some were not yet fully unfurled but no longer in that small state.

My lovely Freds!

We only did one trail and I was disgustingly sweaty and dirty by the end of it but I didn’t fall, didn’t trip over anything, and the only thing really bothering me was my left foot which never stops hurting anyway. We’re coming up on the anniversary of the first big inflammation that brought about my diagnosis and yesterday was the most physical activity I’ve been able to do since then. Dirt is so much easier on all my joints than pavement! Next time we’ll try a different trail and hope for the same.

I’ll probably share more pictures as I learn more and get better. I can see in my head what I want to do with my camera but it’s going to be a while before that really works. I do need some kind of light (I have the built-in flash and a hotfoot flash but sometimes, I need a little more for the lens that doesn’t have an aperture ring) and a tripod as my hands are a bit on the shaky side but I really do enjoy the whole process. I did when I was a kid too. I guess I forgot over the years how much fun it could be to take pictures of places and things that aren’t people. Plus, I’m a lot more observant when I’m hunting for pictures than I am pretty much any other time.

 

 

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Filed under Fun, Life, photography, Rheumatoid Arthritis

This Skin Could Be Better

But, that’s what makeup is for! I know I’ve complained about my icky red splotchiness that is either related to the medication I’m on for RA or the RA itself. Either way, same deal. I’ve tried several concealers, several foundations (it’s the whole reason I signed up for two different sample boxes for several months so I could play around and try things and see what I found. I’ve mostly found stuff that doesn’t work as well as I want it to.

I don’t really do reviews on the makeup stuff but I’m making an exception today because I am super impressed. Foundation can be ridiculously expensive for the stuff that works (hence trying the sample boxes!) but worth it when it does. My skin is super sensitive to boot so I’ve had a very hard time finding stuff that works. I was using bare minerals bb cream with concealer but it didn’t do much at all for the redness really. Color me surprised when my answer turned out to be super inexpensive. My favorite concealer is twice as expensive as my current favorite foundation and that’s just awesome. Even better, I can get it at my local Wal-Mart, no shipping, no wait, no long drive to the pretty shiny makeup place where I want to spend all the money.

If I were willing to post a before pic, I wouldn’t feel the need for the makeup! Face: Flower Beauty Light Illusion foundation, eye: BH Supernova, kohl, lip: Maybelline unnude Matte Ink in Visionary (I think)

Drew Barrymore’s line, Flower Beauty, has a Light Illusion Foundation that is quickly becoming my favorite thing ever. I do wish the SPF was a little higher but yeah. It’s light, blends well, evens out my skin tone, and doesn’t make me break out. It’s very moisturizing so I do use a little mattifier on my forehead but the rest of my skin tends toward dry so it works out pretty well. My redness and splotchiness isn’t as bad as it could be and it’s much worse to me than anyone else but this makes me feel quite lovely. Enough that I’m writing about makeup!  Without makeup, I’ve got old bruise shades under my eyes, red across the nose and cheeks and chin, the occasional random bumpy hive along my hairline, and a small scar at the edge of my mouth that are all practically invisible. None of the other foundations I’ve tried have made me feel quite as comfortable in my own skin. Definitely worth the $14.00.

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April Wrap Up and May Goals

Happy May!

So, April wasn’t exactly as productive as I’d wanted it to be but I did take some time off to recharge a little and I’m still having memory issues so, I’m not actually disappointed in myself. In fact, I’m pretty happy with myself.

Submissions sent in April: 2

Total words written in April: 20056

Days missed: 12

Art projects completed: 1

I might have more missed days than last month and fewer words but I have more submissions sent, more art finished, and I went to a convention and had a few family days in there too. Maybe I’m not where I want to be but it’s still more than it could be!

Goals for May: I’d like to double that word count. Actually, I’d like to double all the things except for the days missed, that one I’d like to halve. I also have an upcoming interview, figuring out this summer’s craft fair schedule (I’m definitely doing at least one!), and other neat and interesting things. I’m going to end up with another category that I’m not sure exactly how I’m going to quantify – it’s art but it’s different than my crafty art, it’s something else and I hope to do some really interesting things with it. But I don’t want to talk about it too much before I figure out if I can actually do it well enough to show it off.

Health wise, I’m doing pretty good. I have one foot that just always hates me but the rest of me is getting really good at compensating for that foot (and I have a really neat cane for when I can’t). My levels are leveling out but not quite where they’re supposed to be yet. We’re giving it a few more weeks before adding or changing stuff. I hope it just settles out. I don’t want to get used to a whole new set of side effects when the worst I have now is the memory issues (as long as I’m drinking enough water anyway).

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Filed under Crafts, goals, Life, Rheumatoid Arthritis, Writing

I Peopled Again

Tekko 2018

Sort of. I didn’t meet any celebrities or get anything signed but the family and I went to Tekko over the weekend. Read about most of it over at The Geek Girl Project. We had a really great time. My anxiety was behaving itself and I think I only had one little minute of tension that I thought was going to bloom but the Litany came to the rescue and all was well again. My RA however was not so kind.

I was on my feet most of the day and, even with my cane (which actually got complimented a couple of times), I was really struggling by the end of the day. I say the end of the day but we were only there until about 3:30 or so. We were there for about 6 hours and I’m still paying for it today. Absolutely worth it!

The kids had a blast, I had a blast, I’m not sure about the husband but he must have been having at least an ok time as he went back the next day with the older child so the older child could go to some panels which we didn’t get to do on Saturday. Next year I want to try and see some panels, especially if they are similar in nature to this year’s panels. The one I’m most upset about missing though was an entire panel on cosplaying with chronic pain.

Part of this convention was a happy birthday to me sort of thing and I bought a few things with my birthday money – I probably don’t need any more art or a cute little dragon friend but birthdays aren’t just for things a mama needs. Plus, I think I found my new favorite artist. Listening to her talk about color choice and characterisation was interesting and awesome. Definitely a kindred mind where that sort of thing goes where visual art is concerned. If you get a chance, you should check her out – her Jareth was what I could not leave without: Kaysha Siemens. And I found the artist that did the mystical Nicodemus type rat my husband brought me home the last time they went! I need to get a few more frames and reorganize my wall now.

One thing I noticed that while I understood, it made me very sad, when I was looking at the cute little dragon creatures, the artist had a prepared speech about why they cost what they do, the time it takes to make them, etc. I should have said something then about not needing to explain that but just because I get it doesn’t mean the next person will. It’s just a shame people don’t value art and books the way they do their fancy over sugared coffees.

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Filed under Convention, Event, Geek, Parenting, Rheumatoid Arthritis

March Wrap Up and April Goals

Happy Easter!

I can’t believe I’m still managing to get words counted! I’ve always struggled to maintain any sort of accuracy in counting but this Excel file is just about perfect for me.

On the writing, I missed 4 days and had a few under 500 days but I was very consistent overall. 35,417 words for the final tally for March, not quite to my goal and only 200 words better than February but, I’m still very happy with it. I got words in on all my projects but I don’t see that happening next month. My goal is to get Christmas in Bear Ridge zero draft done next month and I’m not super worried about anything else. Word counts are awesome and I’d like to stay in line if not do better than the last two months.

On the fitness front – I didn’t gain any weight so that’s not terrible. I didn’t lose any either though and that’s kind of annoying. I loaded up the MyFitnessPal app again and I’m trying to be good about it. I don’t always succeed but oh well. I’ll get there. I am moving more. This month there was a lot of heavier foods and too much eating out. I did get my stretching bands washed because they made me itchy and I’m able to do the steps a little bit better but in the biggest news, I successfully got up off the ground by myself. I would like to lose weight as I’m sure everything will be easier if I do but I’m not going to be miserable in order to do it – Calories In, Calories Out. That’s about all I have the tenacity for right now.

On the Rheumatoid front, I did spend a chunk of this month with my cane – my ankle did something ridiculous for no good reason and swelled up again for a few days, my knees were a bit achy, and some mornings, my feet were flat evil. My husband bought me a new cane – pretty much a length of knotty, maybe burled wood with a lot of character and a pretty grain with a natural grip and a height that works for me. I love it. My skin is still stupid splotchy, irritated, and now a little angry in spots. Yay makeup. Mostly, my meds are doing what they’re supposed to, even if it isn’t perfect. There are still days but I think that’s just going to be a thing now.  It’s mostly pretty liveable but I’m still adjusting. My short term memory is still really stupid so I’ve been using a to-do list app to keep me on track and on target. It mostly works too! Any.do links up with my regular and Google calendar and makes my life much easier.

I didn’t get any art made this month but I thought about it and I planned some out in my head. Well, no, I did dye eggs. I’m totally going to count my six shaving cream and food coloring eggs as art. I had wanted to do more but it just wasn’t in the cards for me. April. Definitely April.

On the personal front, it was sort of a big month – I saw an old friend I hadn’t seen since the summer of 98, my oldest child got inducted into the National Honor Society, I had my annual meeting at the school for my youngest child’s IEP (always nerve-wracking, almost always easy), and, most importantly, celebrated my 18th wedding anniversary. I still can’t believe he’s put up with me this long – he must be crazy. Next month should be a lot slower so hopefully that means also more productive too.

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Filed under Anxiety, Interesting, Life, Rheumatoid Arthritis, WIP, Writing