Tag Archives: health

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

It’s all official now and stuff

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.

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Filed under Health, Rheumatoid Arthritis, Writing

First Appointment

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.

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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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While the fingers will let me

I’m going to type out an update – typing is so much faster and easier than speech to text. Though, if anyone has recommendations for good software that really works and isn’t ridiculous, I’d be glad to hear them!

This last month I’ve seen more doctors than I have in probably ten years. I have no answers right now but I do have direction, suspicion, and probability. There’s a probability that, come the end of this month, I’ll have an official word for the fact that my body has decided that everything needs to hurt.

I’m able to type today because a very nice doctor at the ER gave me a pain pill on top of all my stupid ibuprofen. My back still hurts some but everything is much more bearable right now. I’d work on a story or a poem but the headspace isn’t right for that, at least, not for the things I want to be writing. I’m going through a lot in my head right now also, reading up and researching and looking at all the available information. There are some very big, very scary words and, whatever you do, please if you don’t feel well, never look at the image tab! I do worry a bit about down the road, long term but the outlook could be a lot worse and a lot of people live quite normal lives with Rheumatoid arthritis. It could be so very much worse and I know that even when everything hurts and I’m frustrated that I can’t make my coffee without spilling stuff.

The kids are being great, the dogs are a bit more obnoxious, and the husband is always awesome. I couldn’t ask for better. My puppy is struggling a bit to understand why he can’t sit on my feet right now but he’s the best ever heating pad. The kids keep me in line though – I said something to someone about feeling like my body was trying to kill me and the youngest was very quick to remind me that if my body was really trying to kill me, I’d be dead. Yeah, I have no idea at all where he gets his morbid sensibility. Not even a little /s.

My appointment with the rheumatologist is at the end of the month but I’ve read up, I’ve heard my doctors, and listened to the awesome ER doc remind me twice to make sure I made it to that appointment so …

On the upside, I do have one doctor who will give me a clean bill of health – made it through the dentist with no cavities or icky stuff and I think this dentist will be a good fit for us.

Because this is the most pressing thing in my life, I’m probably going to be posting about this for a bit, at least until we get everything settled out, figured out, and on the road to better. It may be a little while but I’m still going to be working on my art and my stories – just a little slower than before maybe.

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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

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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Annoyed

There’s a great deal I want to write about today but most of it is going to wait until tomorrow. Instead, I’m going to bitch about diets – not mine but my father’s diet. We went out to lunch at Eat N Park. If you’ve been reading my blog, you know that my dad is a cardiac patient and as such, he follows a pretty strict diet because if he doesn’t, he ends up back in the hospital! Eat N Park has always had a nutritional pamphlet and that pamphlet is why he chose Eat N Park over Bob Evans (which has the massive kitchen guide)  or one of the little local diners (where you have to actually talk to the cook). It seems that Eat N Park has decided (according to the local manager) to discontinue the practice of having actual paper pamphlets on hand, instead, directing their customers to Google it or something about an App. I missed a large part of this conversation as my dad and stepmom got there first.

I’m a little put out by the fact that, when the MANAGER realized that there was a dietary issue with a customer who, for whatever reason, could not access the pdf nutritional information he did nothing. He did not get his own phone and access the information, he did not offer to look it up on a computer or ask the kitchen. Nope. His one and only response was that corporate discontinued that practice.

I don’t know if their allergy information is contained in the same way but if it is, that’s just asking for a reaction. I know it’s shocking in this day and age but not everyone relies solely on the internet for their information/communication. My dad’s phone isn’t always smart (often it has trouble connecting to the internet) and my stepmom has an old flip phone. It seems to me that a great number of people who need to be checking the salt content of a dish or sugars and carbs are exactly the kind of people who don’t necessarily have a smart phone with the ability to check nutritional information.

Seriously, what happens if the network goes down?

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