I am definitely more emotional than usual – whether it’s the year, the situation, or the prednisone, I have no idea. It’s also getting to be the time of year when I get the most sentimental and weepy anyway – creeping up on the anniversary of my mother’s death. I’m missing my dad something fierce as he was my go to when I have a crappy day or wanted to vent or just talk about nothing. I’m struggling with this year in general but this season especially. It’s weird because this is my favorite time of year complete with my favorite holidays and I haven’t even started decorating yet!
I know the meds are not doing enough yet – my hands and feet feel like fire, it’s hard to walk, and I am ending every day in tears without much that can be done. I have a call in to my doctor to see if there’s something we can add, change, whatever but, in the meantime, it is what it is. Honestly, it was worse earlier in the year but we’re creeping back up on that level.
I did buy a cheapo cane to use and decorated it with stickers – which my oldest thought was silly since the first stickers were cartoony girl heroes – Wonder Woman, BatGirl, Catwoman, and Harley Quinn (not really a hero so much but still) and my last Supernatural sticker. Husband put one on that says “Stupid Fast” to be funny. Which it is. Eventually, I want to get something interesting and pretty – or at least more stylish – but for the now, covered in stickers works for me. I’m on the hunt for a Hedwig sticker and a Death’s Head Moth sticker.
I’m trying not to get too down and not writing down the poetry in my head – no one wants to read that mess! It’s hard though. Even knowing that I always dip a little into depression this time of year, I can’t seem to stop myself from doing it and all the losses, all the pain, and all the shit of this year, really really isn’t helping. I’m definitely more touchy than usual and it’s hard because it’s confusing to the youngest boy who really just wants me to be able to do stuff properly again (me too, kid!). And that’s about all the typing I have in my fingers today.
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.