I proclaim myself to be Queen of Ridiculous Injuries. A few years ago it was a bruised bone caused by running over my foot with a shopping cart. Earlier this year, I tweaked my knee dancing in the kitchen (and inadvertently knocked over the first domino of my diagnostic process). Years ago, I tripped over a tree limb while wearing a sousaphone and bruised my shin. I’m not counting all the times I’ve fallen up or down the stairs or tripped over the air or run into walls (all of which my kids suggested I add to this list). Now, I’ve taken a pibble head to the knee mid-zoomie.
I’m doing what I’m supposed to do – rest, ice, elevation – but there’s not much that can really be done otherwise. If the swelling isn’t down tomorrow, I’ll have to call in. In the meantime, I’m just a grumpy, miserable, limpy lump who can’t even make it up the stairs.
medication (or the lack of it) can make! We’ve started tapering my already low dose prednisone and I’m feeling a lot less … boom. I’m not exactly sure how to explain it. It’s like I was feeling things too big if that makes sense. It couldn’t come at a better time as I always get weepy in December and this year, Thanksgiving is already going to be difficult. I’m a little more sore and achy than I was before but I’m definitely willing to push through that in exchange for not flipping out over everything or feeling like I want to cry all the time.
I’m definitely not going to win NaNoWriMo this year but I will have a draft for Leilani and Blake’s second book before the end of the year and I’m really happy with that. I have a lot of projects in my head, it’s just a matter of putting them on paper. It used to be I could work five projects at once but my brain is not working with that right now so, I’m going to have to focus on just one. If I can write a minimum of 500 words every day – which isn’t really that much when you break it down – I can get all of my projects finished. I’m really excited for some of them to get out of my head and into the hands of readers. I expect to have Hunter’s Hell finished by the end of the year and Eldercynne Knight by Valentine’s Day and Gods of the Fallen by my birthday. In that order. If I keep it in that order, maybe I’ll get done a little faster because I am super excited by Gods of the Fallen – some of the ideas are just so neat to me. I’d also like to get back to my poetry a little more but I have to figure out how that will fit into my writing schedule.
I think there’s more of my anxiety and depression rearing up than I usually like to admit to. I don’t think all of my sleepiness is just RA related and I know my inner critical voice is just going bananas over every misstep I’ve ever made in my life. It’s not like this part of things is new, I should be old hat at this by now and have it under control already. Except we all know that’s not how these things work in the real world.
Tomorrow is Thanksgiving and I’ve got plenty to be thankful for, even if this year has been just a gaping hole of I’d really rather not. The kids are awesome, the husband is awesome, they’re all healthy and that’s enough for me right now. I hope you all have a wonderful Thanksgiving and get to spend some time with family and eat some yummy stuff. Tomorrow, I make pumpkin pie and a veg and that’s all anyone is expecting of me and that is glorious.
I am still plugging along on Hunter’s Hell but I’m not counting on winning NaNoWriMo this year. The ideas are there and solid but the fingers are not quite cooperating the way I’d like. I’m about 10,000 words behind I think, give or take, but I haven’t started today’s words yet either. Even if I don’t manage to win, I’ll have a complete draft well before Christmas and that’s really what matters.
I went to my rheumy last week. I’m not entirely sure I like him yet – I’m definitely not really comfortable yet but I don’t really expect to be this early yet either. Fortunately, we are starting the process to drop the prednisone so hopefully, that means I’ll go back to having next to no panic attacks or crying jags in the middle of Kroger. He also upped the other med – but mostly it just makes me sleepy and a little forgetful and that’s not terrible. I’m having some increased pain in my hands but I expected that also so I’m not terribly worried about that either. It is what it is. I’d like to be closer to normal but I can’t make things happen any faster so there’s no point in being defeatist about it.
Next week is Thanksgiving here in the states. I am not looking forward to it this year. This will be the first year without my Dad and if I think of my mom most around Christmas and Halloween, I think of my dad around Thanksgiving and New Years. I’m not saying I”m going to start eating sauerkraut because ew, but I’ll be thinking about him and all his superstitions anyway on the first of the year. On Thanksgiving, I’ll be missing his sweet potato flambe for sure. It was my favorite from the time I was ten. I’m really glad my husband doesn’t really get it – really glad – but there’s a part of me that just wants to be miserable and maudlin and be left alone. That’s not how it’s going to work but that’s what I want to do.
I’m finding NaNoWriMo is a bit difficult this year without my cheering section calling to see how many words I’ve gotten. I don’t think I realized how much I appreciated having someone who was invested in my successes and failures and progresses.
If Dirk can be a Holistic Detective and Bart can be a Holistic Assasin, I can be a Holistic Hot Mess because it’s all connected. (I really need to read the books – the show is fun)
I’m not working on making the universe better or balanced or whatever but still. I’m starting to think I’ve been a super clutz all my life to prepare me for the hot mess that is my body at the moment. I can’t tell you how many times I’ve been on crutches so, when I needed them because everything was swelling and hard to walk on, I had them at the ready. I had the ace bandages and the carpal tunnel wrist braces. I did have to replace my stabilizing knee brace because it was better than 20 years old and had a funky funky smell. I’ve also added a new selection of wrist braces and thumb splints and bought myself a cane. And now, my foot is being cruel and hurty so I’ve strapped it in the boot I got when I ran over my other foot with a shopping cart a few years back. No way I’m getting a shoe on it but I’ve got stuff to do today.
Most of this post occurred to me as I was going to bed after digging said boot out of the pile of useful things and I couldn’t help but think how lucky I am to have all this stuff so I don’t have to try and acquire it when I’m already hurty. Lucky being relative and all. Hopefully, it works enough for me to run the errands that need run and go to my support group tonight. If I need to, I’ll add in the crutches too. I may even have to cave and use one of the motorized scooter things at the grocery store – fair warning if you see me, stay back, I’ve never used one before!
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.
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.
Today was my follow-up appointment after giving most of my blood up for testing. It is pretty much exactly what I expected. I imagine I’ll be talking and writing about rheumatoid arthritis for a bit while I adjust and we look for the right balance of medications to get it and keep it in check. Personally, any combination that doesn’t have my hands swollen up so bad I have no knuckles is successful. Right now, I feel like I ran a marathon yesterday – just a little all over sore and achy and maybe a little limpy on the ankles but it’s definitely been worse. My understanding is that it’s going to take months before the new medicine can be counted on to do much so we’ll just have to wait and see what happens.
I’m hoping that with the limbo being over and all that, I’ll be a bit more able to get back to the writing of things and the making of things. I think I have a sculpture I’d like to try and make but I need hands that are a little more cooperative than they are today. Hopefully, we’ll get this all situated on the first try.
On the speech to text software – I’m definitely not going with LilySpeech in the long run. I don’t like that I have to remember to cut and paste every two paragraphs, I’ve lost several pages worth of dictation, and if I swear, it has a built in sensor. I don’t swear a lot in the blog or on FB but I do occasionally use a word or two in my stories and certainly in my personal communication. So, LilySpeech is out and I’m still looking. Though I sort of think I’d rather not use any of them – I feel a little like an idiot talking to myself like that.
Went to the first appointment with rheumatologist yesterday. I didn’t learn anything definitive. He does say I have some sort of inflammatory arthritis. Kind of knew that already. Now we just have to figure out which one because apparently there are a lot of them. So we did blood work out the ears, well, out the arms. 13 tubes! More X-rays. And now I have to wait for a while to find out anything more. This is one of those offices that only calls when the results are immediately icky. I’ll find out all the things when I go back.
He did prescribe a new medication hopefully that will help. I don’t know yet right now it seems there are less irritated places but the places that are irritated hurt more. But we’re only on the beginning of day 2 and it could take a while.
So think I found a reasonably decent speech-to-text software. It definitely works better than what came on my computer. In fact, I’m using it to write this. I can actually type today but I’m trying to put this through the courses while I’ve got a free trial so I can decide whether or not I want to keep it. The hardest part about speech-to-text software is knowing that you sound like an absolute idiot talking to your computer when nobody’s there but the dogs. For those interested, I’m using http://www.LilySpeech.com and so far it does pretty well. There are some little irritants but definitely recognizes my speech better than the one that came on my system and it recognizes when other people are talking to me and what they are saying. However, it is not as funny as the one that came on my system that just gives me random gibberish.
I’m going to give a go with the writing today and see how far I can get with poor Leilani. Fortunately I really like writing her, unfortunately, I have to do terrible things to this poor girl but hopefully, you people will enjoy it later.
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).
Filed under Books, Health, Life
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.