Tag Archives: Rheumatoid Arthritis

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

Doing it Anyway

This last year has really been all about learning to do things anyway – even when I’m sad, anxious, or hurting. Writing even though I’m not as fast anymore and get distracted easily. Doing the errands even if various joints are being stupid. I admit, I’m getting pretty damn jealous of all the people who can just walk all the places and not wind up with yet another swollen hurty bit. I understand some of my friends with various chronic diseases a lot better now and I am bowing to their example and expertise a lot. One particular lady is everything I want to grow up to be – I’ll always be a huge fan of hers – she especially rocks the art of doing it anyway.

It is a really hard adjustment to do it anyway. I’m getting there with the writing, even if this post is pretty much the only writing I’ll do today. It’s harder with the other stuff. Right now, I’ve got my feet up with an ice pack on my ankle hoping for some relief and I’m not really finding it. If anything, it’s sort of making it even more uncomfortable. Today was also leech day – where I go get all my blood let for science (and to make sure all my levels are good *fingers crossed my sed rate is finally going down*) and I forgot to take the bandage off – something about their bandages and my skin do not get along. I have a red splotchy place everywhere the adhesive touched my skin. But, I was hydrated enough to make the stick easy and it doesn’t look like I’m even going to bruise this month which is super yay. I never thought I would ever get used to being stuck in the arm every month without even a pretty picture to show for it but, there you go.

Honestly, I’ve done really well keeping the writing going. I’m at very nearly 17k words for the month and I’m super proud of myself. I’ll be even more proud if somehow I can beat my February totals. This past week was my busiest week with life stuff though so hopefully, next week I’ll do a lot more getting stuff done. After the first part of the week anyway. I have a very important lunch date with an old friend I haven’t seen in a really really long time. Pretty sure since before I had kids. I’m very much looking forward to playing catch up.

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Filed under Life, Rheumatoid Arthritis

February Wrap Up & March Goals

Well, February was my best month since the last time I won a NaNoWriMo. I am a bit of a spreadsheet geek – facts and figures make me so happy.

The figures!

35,221 total words written for February (47,806 for the year)

How does that break down you ask? 9201 words on Gods of the Fallen, 19552 on Hunter’s Hell, 4011 on this blog, 1694 for the Geek Girl Project, and 44 words worth of poetry (or one rough poem). I don’t do a count of any of my handwritten stuff – notes, snippets, my personal diary and such because that would be a pain in the butt to do.

I missed three days out of the month and that’s it. That’s so freaking awesome. I’m really quite proud of myself today, at least on the writing front.

The health front faired less well … stupid yummy food, stupid boring exercise … I actually gained two pounds. However, given how much junk I probably really ate, that’s not so bad. I bought some new resistance bands to help with some of that and I’m trying really hard to stick with the calorie counter app. For me, it’s really more about the calories – if I can keep that under control, I’m good. Doing actual exercise is just a thing I do so I can eat what I want.

I am tolerating the increase in methotrexate pretty well – changing the time of day has made a world of difference. Now I get to sleep through pretty much all of the tired and icky feelings. I’m not pain-free but I’m certainly at mostly tolerable levels and actually able to type. I’m not up to normal speeds but I am thinking that I have to consider this a new normal. I think my days of 80-90 wpm are probably over.

On to March Goals!

On the writing front, I’d like the total count to be higher than February’s and not just because of the missing days. I don’t mind having to not write for a day or three – I might have things that need doing, might be too tired or drained or whatever. I do want to aim for that 50k word count. Realistically, that should be my average at a minimum. That’s only 1650 words per day on average. I might have some days that are only 300 words and days that are close to 4000 words. I really should be able to do 1650 words per day on average. And I really should add a per day average number to my spreadsheet!

On the health front – my biggest goal right now is to be able to get up off the floor without help. Which means I’ll be able to do more proper yoga again I suppose if I can get the dog to leave me be for a minute. Yes, I would like to lose weight. Really, I need to lose a lot of it – 75-80 is my goal (the doctor would be super thrilled with 50 though). So monthly, maybe 5 pounds lost would be really wonderful but the ability to stand up without help is what I’m after.

I got nothing made last month and I would really like to get something neat made this month. So, I want to make at least 5 things in March. I don’t care what they are but 5 somethings. (And find at least one festival I can manage to do for this summer).

I had a lot of progress in February and I just want to keep moving forward as best I can so March is even better.

 

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Filed under Crafting, Health, WIP, Writing

Skin and Scales

For the last several months, since I started medication, I’ve complained about my skin. Some of it cleared up when I finally got off the prednisone but I’m having a resurgence of acne and not all the red splotchiness is going away. I’ve ordered samples, bought samples, searched the internets, and slathered my skin in all manner of craziness. I’ve learned a few things – some of the most expensive skin stuff smells like skunk cabbage and rotten carrots had a baby, sheet masks are weird as all get out, and bubble masks really feel neat. And nothing works for me. Rather, nothing did.

That’s not to say I didn’t find things I liked – I really do love the Glamglow cleanser (it smells like licorice!) and the crazy bubble cloud mask things. Micellar Water is the greatest makeup remover ever (but I can’t leave it on my skin like some people). And Garnier’s is just as nice as some of the pricier ones. And mostly I’ve learned just how expensive skincare and makeup can be. Oh my goodness, it can be ridiculous! Some of it though is absolutely worth it and I would be so dangerous if I had real money. Fortunately, there are places like Marshalls where I can find something new to try while not spending a ton just to discover yet another thing I shouldn’t put on my face.

Believe it or not, the only thing I’ve found that works is a regular drugstore brand. Actually, I shouldn’t be too surprised as this particular brand was my astringent go to a billion years ago. I’m a couple of days in, using the system – cleanser once, spot treatment and lotion twice – and the difference is huge. The blemishes have diminished, the redness is nearly gone – even on my cheekbones! Clean and Clear’s Advantage is super affordable, especially compared to the systems I’ve looked at trying to find something.

Ikea Bento

Now for the scales part! My oldest kid is super earth conscious and really trying to live as close to zero waste as he can (though complete zero waste is really impossible in this day and age. In trying to find ways to minimize his footprint, he was looking at bento boxes. Rather than wait for shipping, we went out and picked up Ikea’s version of a bento and got to work trying to figure out what we were going to put in them. Apart from zero waste, I’m hopping on the bandwagon is hopes of a smaller waist. If I try really hard to stick to the portions, to drink all my scheduled water, and, you know, actually move, it should all work to get that stupid number going the right direction just a little faster and continue to do so until the Wii Fit board stops reminding me just how horribly fat I am in a far too perky voice.

Today’s lunch is probably the only one I’ll blog about (unless I make something insanely pretty) because it’s the first one.

Today’s lunch: Green tea noodle ginger chicken salad made by my oldest kid, pork steamer buns (that I need to learn how to make), green peppers, sugarsnap peas, grapes, cheese. So yummy.

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Lost Days

Yesterday was mostly one. Not entirely, I did get a few hundred words on my non-priority project but I don’t remember doing a whole lot otherwise. Some dishes, a trip to the grocery, and a lot of sleeping. On the upside, today I don’t feel as congested or achy as I did yesterday. I’m thinking the barometer did some moving yesterday in preparation for today’s weather shift. So far, it really seems like my joints are fine in the cold (as long as I take my meds), only my bad knee gets mad when it’s raining, but pressure changes are terrible. I guess this is just another one of those things I’m going to have to get used to. It’s not like I didn’t have lost days before it’s just different now somehow. It feels like it’s harder to make up the losses than it used to be. Of course, it kind of is.

Before, a lost day was nothing to worry about and likely not really lost but spent doing house stuff or reading a book or doing something with the kids. Now, it’s a freaking event if we do a trip to the strip district for coffee, olive oil, and fresh tortillas (and a bunch of other stuff we probably don’t need but thoroughly enjoy) and I know I’ll pay for it the next day. I’m looking at the schedule for craft fairs for this summer and I’m debating a bit on how many I want to do or will be able to do. I was never very normal but I do very much miss being healthy. I miss when I could make up a day pretty quickly because my “day” really only took an hour or two of hard focused work.

I’ve actually managed to write every day this month so far – but it’s early days yet and we’ll see if I can keep it up. I’m going to try though – at least 300 words but better if it’s more than that. I have too many things I want to write, too many stories to tell, and I just feel like I need to get them to paper (or file) sooner.

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Filed under Rheumatoid Arthritis, Writing

Water is better when it’s coffee

Really.

However, it does seem that adding water to my schedule has minimized my Thursday discomfort almost as much as it helps my monthly blood draws go easy. Even with the increase in my dosage this week, I’m not having my usual weekly feel bad. I have a little tummy upset but not enough to keep me from a celebratory jalapeno burger.

We increased the dosage of methotrexate so I can get completely off the prednisone. I did make the doctor laugh though when I explained my problem with prednisone. It makes me hate everyone. It sounds ridiculous but it’s true. I’m super glad it helps and gets me through the flares and my body’s overreactions but it just makes me so angry that I’m even gladder to see the end of it. Hopefully, the new dose gets my numbers in order as I’d like to stick to this one thing that I know is nicely covered by my insurance and not risk some of the ridiculous numbers I’ve heard from other ladies with RA.

I did not make my word goal this week and I’m ok with that. I had a huge computer malfunction. Fortunately, a reset worked just fine, even though it took me all day to get things reinstalled. Technically, I’m still not done doing that but I’m not complaining because I didn’t lose any of my work and I got a reminder about making sure I do my backups religiously.

Really, it’s been a good week overall and it looks like I’ll actually have both kids back in school without any delays or closings or snow or flooding. I don’t know if I remember the last full day the kids had. I’ve got to get readjusted to the ridiculously early start times which is less than ideal but it’s also great to get back to our schedule.

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Filed under Life, Rheumatoid Arthritis, Writing

Feeling Pretty

At least around the eyes…

One of the side effects of the medication I’m on is splotchy, icky skin. It’s not actually as bad as I think it is but it’s bad enough that I don’t really want to leave the house without makeup. I did today though because the Hubby of Awesome took me to Sephora. I’ve never been to one before, just online with their Play boxes and how-tos and stuff. For the most part, unless there are super specials or whatever, if today is any indication, I much prefer the shopping experience in store.

The lovely lady in my most local Sephora color matched me, walked me through the foundation options for my very specific issues and then she gave me pretty glittery eyes. She explained how to do the eyeshadow myself also – we’ll find out tomorrow if I understood it properly. I’m really glad I went in person as the two foundations I was looking into are both heavier and have harsher ingredients and would likely make my ultra sensitive stupid skin worse (she didn’t say stupid, that’s all me).

I struggle with people skills – anyone who follows me long enough will eventually hear about my anxieties and lack of proper peopling abilities. I’ve had some really not great experiences as a customer, especially in places geared for women and the act of helping women look or feel beautiful. Today’s trip was probably my best ever experience with customer service. My worst was about eight years ago at, surprise, surprise, a Victoria’s Secret.

I am not a small girl by any stretch now but I used to be. When I was more Cher shaped and less Venus of Willendorf shaped, my favorite bras came from Vicky’s. My favorite undies too. Just about eight years ago, my youngest kid was finally weaned, my boobs belonged to me again! I wanted to celebrate with a pretty (and very much needed) new bra so, of course, I went to my favorite over-the-shoulder-boulder-holder purveyors. And it was the last time I’ve been in one of their stores. Apparently, that store isn’t actually for the women who most need a good bra, no pretty lace whatsits if your measurements aren’t just right and the ladies who work there  (or did eight years ago in yuppy central) are not shy nor kind about telling you so. I know I’m not the only one who has dealt with similar phrasing from that particular store.

My poor husband got dragged along partly because I’m not quite able to drive myself there yet and partly because I didn’t want to go alone because I didn’t want a repeat of Vicky’s. But, because of Heidi’s awesomeness and ability to put me quickly at ease, he got to go play in the mall instead of staring at the pretty sparkly things he couldn’t care less about, waiting to bolster me, should I need it. Because he’s awesome like that too. Maybe there’s a glimmer of a sunrise on the horizon of this year after all.

 

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Filed under Fun, Life, Rheumatoid Arthritis

I think I’m a hedgehog

I learned a thing today. There’s a thing called the Hedgehog’s Dilemma which uses the hedgehog’s gathering together with other hedgehogs to share heat but having to stay their distance so they don’t hurt each other with all the sharp pokey ends to illustrate the introvert’s biggest problem. I am a Hedgehog – there’s nothing more in the world that I want those close relationships and camaraderie and shared experience, I just want all that from over here where no one is touching me. Or looking at me. Or expecting me to be able to use real words that make sense in a vocal fashion.

We’re a few days into January and I’ve had the kids home extra days for the cold so I haven’t had but 5 hours to myself since the first day of Winter. I am not getting words outside of my personal journal where apparently I have a lot to unpack. I’m still working to get back to normal from the injury I sustained in mid-December! It should have been a minor thing, a bruise at most but my immune system just gets so excited at having something to do that it treats it like a mortal wound instead. I’m so close to being back to normal but it’s still stiff and sore and I’m still moving like it is both of those things. I enjoyed the kid part of Christmas but I struggled a lot with the rest of it. I’m missing my dad a lot and thinking about my mom a lot. I’m weaning off the prednisone but my family says it’s still mucking with me.

I know my methotrexate is doing its job, with every dose, the inflammation in my joints really does go down but with every upping of the dose, my icky, sick, tired time the next day increases by about an hour. Really though, five hours of ick is worth it for being able to do stuff the rest of the time. I’m even adjusting so I’m not terribly tired after taking it. I think it’s likely to adjust up at least once more before we settle out but I do hope it’s not much more than that.

I do need to get back to writing. I need to get the last threads down and finish Hunter’s Hell. I know how it ends, I just have to fill in the odds and ends and get it done then set it aside for a short time and come back to it when I’m not a weepy, emotional mess because it’s absolutely creeping into the words a bit. It’s not like I don’t have projects to work on – Hunter’s Hell, Eldercynne War*, Gods of the Fallen, Long Is The Way,  and Soul Eater are just the main titles I have in various stages of progress (though I have two more I ought to be submitting to places). I’m struggling to even read books right now, let alone write them. I’m far too emotionally involved with fictional characters, my own and other writers’.

This year hasn’t started that great. I think I was hoping for some kind of switch from awful to awesome but I think it’s going to take more than a switch. I think it’s going to be a slow transition but I’m pretty sure it’s going to transition. I can’t take another year like last year so it’s just going to be better when all is said and done. Period.

 

 

*working title only, likely to change.

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Filed under Anxiety, Health, Interesting, Life, Writing

Pressed like a grape

I went to my rheumatologist today – who I discovered that I like much better when I’m not hyper-emotional with the prednisone – and the difference is night and day. If I wasn’t worried about injuring myself again, I might even dance I’m feeling so much better.

The knee was about half as swollen as it had been but he still managed to get six full big syringes of synovial fluid out of it. The moment he said he was going to drain the knee, I was a little bit panicked. Big needle = scary. Hell, little blood draw needle = scary and ouchie too! Apparently, my rheumy is really good at draining joints. The worst part wasn’t the needle at all but the manipulation of my really stupid and crooked patella (My kneecap moves in an arc instead of properly up and down). Between the drainage and the cortisone shot (that I didn’t even feel), the difference is amazing. Absolutely worth being pressed like a grape. I almost asked if this was a thing they could teach me to do at home since it will undoubtedly happen again.

It’s my medication day so I’m still super tired and all that but I’m going to make the youngest kid’s day and meet him at the bus stop, something I haven’t been able to do all week. I can’t even tell you what a relief this is. I feel terrible scaring the kids like this and it just keeps happening. My stupid immune system just refuses to roll over and play dead. All my life, it’s done a great job, maybe too good and now it just won’t stop even though there is no reason for it to be at war with anything. I’m just so damn happy that I’ll be ambulatory for Christmas and the short one can settle out a bit about that.

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Filed under Interesting, Life, Rheumatoid Arthritis