Category: health adventure

What is it like to be stuck at home?

Posted on by Grayson

On any given day, everyone wants to stay home. It would be nice to stay at home, lying around all day and watching TV.

But what if that was all you could do?

Not so fun huh?

Today is the first day out of the last few that I have felt well enough to do really anything. I did go to work the last two days, because I have to being in training still, or I’d lose my job. Not an option. It is hard to explain to my friends what exactly it feels like. But it’s like being trapped in your own body and there’s nothing you can do about it.

On waking up Monday, I could barely move. It got worse before it got better, and Monday night I was limping pretty good at work… which is okay, since I get to sit mostly. Tuesday was a little better, but still I was too swollen and in pain to do anything until like 2pm – and then the big thing I did was shower, something I physically couldn’t do Monday. Yay.

When showering is your big accomplishment, it’s a sad day.

All of this because I tried to taper my steroids down one milligram. It makes me mad that I am so dependent on them, but at the same time I am thankful I am not more dependent on them like many others I know. 5mg a day is much better than 50 or more. But I know one thing – I’m not going to make that mistake again.

When Ugliness Returns

Posted on by Grayson

I was SO excited after my wisdom tooth surgery – my arthritis had dissipated and was calm. Everything was wonderful…

Until the Friday afterwards, when people at work fought and I got to go deal with it. Ugh.

I won’t get into the whole situation, but just a few days before as soon as laughing gas hit my face, my body was perfect. Yeah, okay, so I had some gaping holes where a few teeth used to be, but other than that… Returning to work made my body hurt exponentially more.

So what did I do?

Well, I’ve found a new job and will be starting that in early October. While I will be sad to leave some of the people that I currently work with, being in management while going to school and handling this disease is just not something I can do. Part of me feels like I’m giving up, but the other (bigger) part knows that I’m doing what’s best for me and that I’m being realistic.

My new job will let me sit down all the time. I won’t have to run around and move heavy things. I also have no direct interaction with angry people, nor do I have to make it right. Instead, I will spend my time captioning  one half of a phone call in order to help people who are hard of hearing better understand their friends, loved ones, and random people. So I also get to feel a lot better about what I do for a living.

And they have benefits. I dunno what they will be like and won’t know until orientation I’m sure. But that’s exciting, and hopefully helpful. And I will get full time hours too. Yay.

Now I just need to get through the rest of the month and the six days I will have to work overnight before I am done. And talking to my boss tomorrow morning. Awesome.

Supergirl!

Posted on by Grayson

The boyfriend and I went hiking yesterday out at Devil’s Lake. It was gorgeous and we had a lot of fun. It was nice to do something more physical on my day off from work. I haven’t really been able to do that lately.

But holy cow, we were like billy goats up there. We started on this trail that was 0.4 miles up the side of a mountain-esque hill (compared to Oregon, Wisconsin has no mountains). But what we failed to realize until it was too late was that it was a back and forth trail, basically straight up the side of this thing.

I’m glad we had our walking sticks. And that the slippery, dusty rocks didn’t let either of us biff it all the way back down.

My body is less sore than it should be. And I’m not excited about it. That just means it will get worse on that second day. Lame.

But I was SO impressed with both of us and our abilities to keep going up this trail – and then down another one. My legs got real shaky and, in some points, my left knee wanted to give. But we made it and rewarded ourselves with a dip in the lake.

And we went to see The Tempest at the American Player’s Theatre. It was pretty awesome. I forgot how funny that play in particular was.

And now I’m at work. I’m sure that by 3pm when I get off I’ll be super tired. Yay.

It’s almost moving time

Posted on by Grayson

So it’s exactly one week until the boyfriend and I get the keys to our place. I am super excited about it, all except the actual moving part of course. We’re going to have tons of help, so that should be no issue. But I also find myself extremely worried.

I won’t have a day off until next Saturday, which is fine, but I am worried about how my body will react to all this working and then having to lift things. I am so much weaker than I was last year.

Well, weaker isn’t the right word.

I’ve been working out and building muscle. It’s easier for me to lift things. But I also get tired so much more quickly now and that’s really what I’m worried about. I shouldn’t have to carry anything that heavy, but it also doesn’t feel right letting other people do all of the hard work.

No, weak is not the right word. Useless is too strong. Inept makes it seem too odd.

I guess there’s no one word to encompass it, and maybe that’s the fun part about dealing with a chronic illness. There’s no easy way to explain to others how I feel. I am worried that my body will crap out on me, right when I need it to work the most. And worried about other people seeing. I’m okay with my boyfriend seeing how tired I am (to a point) or close friends. But even then, I distance myself from them and don’t really allow them to know how I’m feeling. I feel like I ‘complain’ too much about my body as it is, and don’t want to burden everyone with everything all the time.

After the move, I will just be counting down until August when I can look at switching doctors or at least visit a GP who can give me pain medication. It would be nice to have something stronger than 600mg ibuprofen right now.

“Remember your hippopotamus oath!”

Posted on by Grayson

After hearing from my primary doctor FINALLY, my rheumy’s nurse tried to call me today to get me to come in sooner. I’m not going to do it.

At this point, I’m not so sure I want to even go in on the 28th.

From what my primary care dr said, it seems like all my rheumy wants to do is reevaluate my current medications and give me a referral to the pain management clinic… just like I said.

I just don’t know how to handle the appt at this point. Thoughts?

A world of pain

Posted on by Grayson

Okay, so my rheumy’s office apparently doesn’t handle pain meds. Not quite sure what to think about that. They ‘treat’ the disease, but not the symptoms? Except if I’m flaring, I might be able to get more steroids…? Something here doesn’t make sense. They weren’t even willing to discuss any of that with me. Whatever.

So in the meantime, life sucks. I have an appt with my ‘primary care’ doc tomorrow. Hopefully she can give me something for pain. Otherwise, it’s a referral to the pain management clinic… which I’m sure would be helpful, but I just can’t afford it – the cost or the damn wait.

Bah!

St Patty’s Day From Hell

Posted on by Grayson

Seriously, yesterday/this morning sucked. And no, I wasn’t drinking.

I worked last night at the hotel. And while there, had to take 2400mg of ibuprofen, which pretty much had no effect on my pain level and neither did anymore caffeine. My jaw felt broken and nothing I could do was helping. I got home and warmed up my aromatherapy cow and finally fell asleep with that on my face… only to wake up an hour later with the same damn pain.

Warmed the cow again, rinsed my mouth more, and tried to sleep. This time I made it off and on until 5.

Warmed cow did not help anymore. Took migraine meds, which only make things worse for about an hour or so, so sleeping went out the window. At 7, woke up AGAIN, and took some more ibuprofen. Finally, some real sleep for about an hour.

If you’re a rheumy, please understand how much more of a dangerous place you put patients in when you don’t want to prescribe pain meds that work. I felt sick to my stomach all night because of how much I took, and probably had a mild overdose if I really want to look at my symptoms.

It’s too cold :(

Posted on by Grayson

I think I am getting annoyed with the length of winter.

I remember being little and spending time with my great-grandma. She had MS and always had cold hands. I feel like her so much this morning. To add to it, I wish I had a great sweater like her with wild cherry cough drops that’re more like candy than medicine, curled up in a huge fluffy blanket. She really knew how to live with her chronic pain, and I wish she was here to show me how she did it so well.

Also, I’m kind of getting annoyed with people where I work not doing their job right. I’m starting to feel like this is too much stress for me, because I’m having to clean up after everyone *sigh*

I’m ready for my teaching job now, kthanks.

Mmm Sleep

Posted on by Grayson

Well, the new year is here… and so is more swelling.

I rang in the new year playing Red Dead Redemption in my boyfriend’s apartment. On a side note, that game is really fun, but I find that – like the GTA games – it gets to a point where I can’t really do big missions anymore. Oh well, the boyfriend isn’t too bad at those. Yay teamwork!

We did a really fun thing this year in our new abode of Madison – the US Bank Eve celebration. It’s more geared towards kids, but shoot for $5 a person why would an adult pass? Probably because of the lack of alcohol, haha. But it was great. The bank had places set up all over Madison that the one $5 wristband would get you into. We enjoyed some nice ice skating (complete with a nice skate sore for me), petting zoo animals, and a trolley ride through downtown guided by the first mayor! And all in glorious 40 degree weather. It only lasted two days, but I miss it so badly.

Yesterday, we went bowling too. The boyfriend is pretty good at that, but I somehow have the gift of spinning balls without really knowing how. Go figure. I had a margarita, so I’m blaming my low score on that 🙂

Off and on last night, I slept for about 11 hours or so, ending up sleeping at the boyfriend’s an unplanned second night. I kind of feel bad about it, only because I know it is difficult to sleep with me haha. But more seriously, I’m starting to feel more fatigue from my RA and the meds I’m on too. And I’m starting to feel the toll it’s taking on me. I just always worry that I’ll be too busy dealing with my own physical pain to notice how things are affecting the people closest to me. I’m stuck with pain because of what I have, but the people I care about the most shouldn’t have to suffer for that. And that’s why I act like I’m always okay. But I’m starting to learn that even my super-ability to do that is starting to have limits.

Sometimes it’s hard to tell when how I’m acting is normal or not too. More and more lately I kind of feel zombie-esque. It doesn’t seem to matter how much sleep I get or what else I have going on either. It just always feels like I’m waiting on something that’s not there. It would be nice to know what it is, and when I’m gonna get it. Seriously.

And I’m still swelling, so I think I might need to up my steroids. I might play around with it myself before my doctor’s appointment at the end of the month and see what helps. I should’ve known that 5mg/day wasn’t going to be enough without me being all placebo-effected. Bah.

سنة جديدة سعيدة‎

Posted on by Grayson

Happy new year! (well, soonish)

This has been a rather interesting year for me, with a lot of major events. I think they might be worth a little recap.

Okay, so we started off the year with posts on the horrible effects of RA and Still’s Disease. Not maybe the best way to start off the year, but I made up for it by posting about great RA-ers like Sandy Koufax, Jamie Farr, and Renoir. Then, I finally got back on track medically by going to a few doctor’s appointments and being told I should be on medicine. My rheumy was nice at first, but quickly started to suck. My arthritis was getting worse too – so bad that I decided it was time to get a disabled parking permit. I don’t know what I would’ve done without that this year.

But! Thankfully, my arthritis behaved pretty well during my college graduation and my wonderful boyfriend’s gift of a trip to go visit my extended family where I grew up in Oregon. I really miss being there for many reasons, but I think the weather is a big part of it. He’s a pretty awesome person I think, and I’m not sure how I’d get by without all the things he does for me.

I moved, twice, and started two new jobs – one at a hotel and one on campus at the Wisconsin State Historical Society. They’re both pretty awesome jobs, and they hardly seem like work… in my head at least. Stupid body. Oh yeah, and I started graduate school! Learning Arabic is pretty tough, but getting an AB in it is awesome. Also, I got a new rheumy and GP.

I began to understand what having Still’s Disease does to a relationship as things get worse. I also decided to be a little more open about my disease to everyone, with this blog being a big part of that plan. I blogged about one of my busy days too, even though it wasn’t one of the busiest I’ve had. Oh, and let’s not forget that beautiful flare up at the end of October, but I didn’t let it screw up my weekend away.

I started taking steroids, first to get rid of that flare and now to control symptoms. And now I’m also taking vitamin D and 600mg ibuprofen. But honestly the ibuprofen I think is making me sick to my stomach everyday. I thought at first it was maybe because I wasn’t eating enough, but I’ve been eating a lot (for me) lately with still the same issues. Bah!

But all in all, I’m a pretty lucky person this year. I mean, I even discovered some things I like about RA…ish. I’ve been through a lot and the stress level is understandable, but having a break from school is helping, even if I’m working both jobs more.

Happy 2011 everybody! I hope this next year brings better health for all of us.