Human Chimeras

was a really good day.  Went out with my friend Tess.  We shopped at three different stores, got an ice cream and sat outside and enjoyed the gloriously beautiful day while we ate it, came back here and played a game on the pc.  I walked more yesterday than I’ve walked in a long time.  Usually I’m in so much pain after just going to one store that I’m done for the day.   No pain yesterday.  Energy.  Did not get tired until the very end.  I am seriously like a different person.  Like a real human being.  Like I used to be before I got sick.  I am not wasting it.  Not worrying about if/when it will end.  Just taking it as it comes and Getting Things Done and being hyper with the excitement of actually feeling good.

Today my legs are a little stiff and sore, but that’s from walking a lot more than I am used to.  It was a really good day yesterday.  Makes me happy.

Interesting but disconcerting, when I was looking for something to illustrate this post, ‘women’, ‘men’, or ‘people’ getting things done mainly brought up pictures of housework.  Housework.  Sheesh!  At first I thought it was just women, cause that was my first criteria, but then when I tried the other two, same results.  Housework, office work, or irrelevant images.  Puzzled R Us.

“Decisions are made by those who show up.”  Aaron Sorkin

Still here.  Much better than I was, and actually Getting Things Done.  I am still on the 20 mg of Prednisone, which almost makes me think I’m not sick, it works so well, but if I go back to 15 mg for a day or two, it all comes right back.  Meanwhile, I am working on some serious getting-rid-of-things and rearranging a bit.   A little at a time, but it is so great to actually be pain-free and have energy at the same time, I am NOT going to waste it.  Getting Things Done is a really good feeling, when you haven’t been able to do that much at all for years.

Trying hard to ignore the news and the idiots who are co-opting our government for their own ends.  Remember, voting matters.  I’m going with the incumbent, because those on the other side of the aisle are too out there for me.  Let’s take away people’s freedoms, let’s starve the poor children and cut off their medical help.  I don’t get it, especially since they use religion as a means to get what they want, even though it all flies in the face of what Jesus taught.  My friend Tess and I blame cyclamates.  Neither of us ever drank soda with cyclamates before it was banned, but a lot of people did, and their brains have obviously suffered for it.  Am I right?  I am right.  LOL

And do we ever need it. Reason and critical thinking seem to be vanishing in today’s America. Fortunately, there are still those whose brains haven’t totally been fried by the crap that’s being put out there. Here’s a link:

http://nationaldayofreason.org/2012/why-national-day-of-reason/

Cross-posted from my LJ.

Turns out I may not have whatever they thought I have, and I have to now go to a rheumatologist.  My sed rate has gone back to normal, so I should be pain-free.  Is that hyphenated?  I don’t know.  But since I’m not pain-free, and had to up the Prednisone again, something else must be going on.  AND, (there’s always an ‘and’, or a ‘but’, isn’t there?) I may have to see an endocrinologist to figure out what’s going on with the potassium levels.  Well, I’ve been pretty healthy most of my life, so I guess I can’t complain.  But sheesh, I cannot catch a break.  Still having minor vertigo since I woke up Wednesday, but doctor says it could be caused by numerous things and to see if the Prednisone helps.  So far, not.

On the other hand, I reset my wireless modem to WEP, which is safer, and now I cannot connect my Roku to it.  I am NOT going back to cable.  I hate Comcast.  I don’t watch much tv anyway, but damn, why don’t things just work?  Why, I ask you?  Oh, you haven’t got a clue either?  Oh, well.  Later.

Pretty neat, for people who love words and language. 

 Ideas Illustrated.

I guess this doesn’t just get better.  I have pain-free days, and then, like today, pain-filled days.  I did have two days (not in a row) where I actually GOT THINGS DONE!  Yes!  Yes I did!!  Not big heavy strenuous things, but things, nevertheless.  The best thing about this is the Prednisone is keeping my legs from hurting all the time, so I can actually walk and all without being miserable.  Yay, me.

What fun.  Today the chest pain is worse, though still not terrible, and breathing is difficult.  Called doctor, not in til Wednesday, so upped my Prednisone to previous level.  Do NOT want to go through that again.

Rained, finally.  Poured, actually.  It was gorgeous.  We really needed rain, it’s been very dry here since January.  Most unusual winter I’ve ever seen, and I hope it’s not a harbinger of what is to come, just an anomaly.  Time will tell.

Nurse is coming shortly.  Post again when I’m up for it.  Thanks for reading, everyone.  I know it’s not terribly interesting of late.

Feeling better, slowly.  Had a nice birthday Friday.  Lovely phone chats with both DDs, and my friend Tess came over and spent the afternoon with me.  I can eat again, and was thinking of fish and chips, she volunteered and actually went to pick up an order for me.  Tasty.  Haven’t had fish and chips in some time, but the point is….how lucky am I to have a friend like that?  Very, I’d say.  I was very, very tired that day, but still managed to have a lovely time.

I’ve cut back the Prednisone, as per doctor’s orders, and am seeing him again Friday for more blood tests.  I’m hoping less Prednisone doesn’t mean the pain comes back, which it did briefly yesterday, but not today.  Wait and see, I guess. Nothing much else going on, just slowly getting better.

Here I am again.  I have been quite ill with pleurisy and inflammatory something or other, with lots of pain and meds and sheesh!  Slowly getting better, I think.  Can only be out of bed for short periods of time.  Lots of sleeping going on.  Lots of fluids, not much eating.  Not my most fun time, but doable.  Like I had a choice.  It was nice having people over to look after me for four days last week, and my friend Tess did triple duty with looking after me, driving me to the doctor’s, and picking up scrips for me.  Then my homemaker, Traci, who did more than called for, and my great kid Kris, who came twice, cleaned, cooked, and shopped for me.  It was quite hard to adjust when it was just me.  I hadn’t realized how much I repressed my feelings about being alone most of the time.  I’m hoping with the new doctor and all, I will be able to get better in general.  He already upped my thyroid meds, as I wasn’t taking enough.  I’m hoping he can help me if my sleep scheduled gets messed up again, too.  A good doctor.  Not as  common as you may think, I fear.  Anyway, here I am today, but still recovering, so may not be back for awhile.

HA!  Been having lots of body pain, and the pleurisy pain has not gone away, just kept under control by the vicodin, which is all gone, and fake excedrin really doesn’t do the trick.  Too much pain and too fatigued to function, really, so dishes are piling up, food isn’t getting prepared, things are going to hell, as they tend to do when you’re ill.  I remember how lovely it was those two days I was ordered to rest and take the vicodin.  No pressure.  No need to struggle every moment to cope.  So about three days ago, I decided to revisit that (without the vicodin, unfortunately) and just give up.  Quit trying.  Quit struggling.  Just accept that I can’t cope and let it go.

However, I am apparently too pigheaded to just give up, so I spent the past two and a half days trying to convince myself to call my youngest DD and ask it she would come look after me for a few days til I see the new doctor Wednesday.  Asking for help is really, really hard for me because I didn’t/couldn’t go help my mother when she need it, and so I feel like I don’t deserve to have help for myself.  I know I could not have gone there and been of any use, because the trip and the stress of being in the place where I grew up in hell would have completely fried my being.  But still…..guilt is guilt.

Then today, I had this lovely comment on my Sleep post from a few days ago, and it made me feel so much better, I picked up the phone and called my kid and she is coming down tomorrow.  Oh, happy day.  Wasn’t sure if she would want to, but she kind of gave me a hard time for not calling sooner.  How lucky am I?  I have great kids.  Really, I do.  They never fail to surprise me and make me proud, even when I know I don’t deserve anything from them at all.

Out of steam, but thank you to the commenter who made the difference.  You never know, right?  And thanks to my great kids. 

Didn’t get to sleep til daylight was broad, but awoke at 10:15, and had slept enough, it seems.  Having some pain lower down in my lungs today, not bad, but I really need to see a doctor.  Finding a new doctor is NOT easy.  Hardly anyone local is taking new patients, and those that are have no available info that I can find.  I’d like to at least have some idea of who I’ll be trusting my health to.

It’s a gorgeous sunny day.  The flowers on the trees across the street are still looking lovely, no sign of leaves peeking through yet.  Some years the flowers last for quite some time, others for just a few days.  Never in my twelve years here have they bloomed in March.  This has been a very unusual year, weather-wise.  My friend Tess was over yesterday and we watch an old movie from the thirties.  It had a very snowy New York City in it, and we reminisced about the olden days.  You know, the ones where we had snow and all as well.  We are very hilarious.  Yes.  Yes we are.  To each other, at least.

So DD has convinced me to try a wheat-free diet.  Not sure of all the details yet, but she swears by it, and I’m willing to try almost anything to have some semblance of a normal life, although whenever I mention ‘normal’ in connection with myself, my friends tend to have fits of giggling.  Well, really!

Today is the local election, and I am just getting my absentee ballot mailed.  I think it still counts.  Voting matters.  It’s people not voting over the last couple of decades that has allowed the religious fanatics to co-opt our government.  Not going to go there, however, cause it makes me crazy just thinking about the state my country is in.

Much better.  Pretty much slept except for the odd hour or two here and there, from Thursday afternoon til Sunday morning.  Awake all day yesterday, but in bed by 8 and asleep soon after.  Cut down to one vicodin at a time yesterday, so just drowsy, not falling asleep.  A little residual pain now and then, but it’s almost gone.  Just tired, not much energy at all.  Pain – coping with pain – takes it out of you, that’s for sure.

One thing I observed yesterday was that I did not feel like I was struggling.  I always have pain somewhere in my body.  Always. I am always tired, no energy.   I always feel like I’m struggling to cope with it, not let it get me down, and with the effects of pain – remembering what I need to do, what pills I need to take when, what day is it and is it homemaker day.  Is there food I need to do something with before it goes off? Can I muster up the energy to do whatever it is I need/want to do?   All the things you aren’t even consciously aware of when you’re healthy, become obstacles to be dealt with when you aren’t.  Life is a constant struggle to deal, to cope, to manage, to not give in and give up.  And those few days with the vicodin and being ordered to just rest by the ER doctor, I didn’t have to struggle.  If felt so freeing and I was so relaxed and just here.  I quite enjoyed that. I did kind of daydream about how great it would be to have someone to take care of me.  Make sure I took my meds on time, made the meals and cleaned up after, took care of all the details of daily living.  Not gonna happen, but fun to think about.

I have a new favorite quote, from fanfiction about Sherlock Holmes.

A man could endure anything if he lived without expectations.  Doctor John Watson

I agree.  This is the way I live.  No expectations.

Well, it’s not mine, anyway.  Spent all of yesterday in the hospital.  Chest started to hurt really bad around 5:30 am.  Felt like a muscle spasm or something.  By 8, I really couldn’t do more than shallow breaths because it HURT, oh man, did it hurt.  Called my friend Tess and she drove me to the ER.  Tests, tests, more tests.  EKG, cat scan, loads of lab work.  Nitroglycerine.  Meanwhile, it was hours before they gave me pain meds.  Also, the potassium was very low again, so had two separate infusions of that, plus oral pills.  Morphine.  Did nothing.  Morphine!  I thought morphine was one of the ‘good’ drugs.  Apparently not.    Over the course of the day, they ruled out pulmonary embolism, heart attack, and finally decided it is pleurisy, which is an inflammation of the chest muscles.  Finally gave me some Vicodin, which kicked in after about two hours, and made the pain at least bearable.  What causes pleurisy?  Possibly a virus, although I haven’t been sick at all.  I wound up with about a dozen stick-on things for the ekg, etc.

So we go to the drugstore and get the vicodin scrip filled, and stopped off for some Chinese food to go so I would have something I could just eat.  Tess made sure I had pills, water, phones, remotes, etc. before she went home.  Fell asleep on the couch, propped up on pillows.  Cannot lie down with pleurisy, apparently.  The cat scan was NOT fun, but fortunately did not take long.  Took more vicodin at 11 pm and really wanted to go to bed, which was interesting.  Trying to find a way to semi lie down and still be able to breathe.  Finally did, zonked out, and just woke up about 20 minutes ago.  Pain, pain, pain.  I did pretty well, I can be pretty stoic, but the potassium iv really made my arm hurt, and the two different pain sources almost did me in.  I was starting to lose it, but they adjusted the flow and added some fluid, and the arm didn’t hurt as much.

Everyone at our local hospital is really nice and caring, and I was lucky to get a very good ER doctor, who explained everything, and did what he could for the pain.  I am, however, getting to familiar with the hospital.  After only ever being in the hospital when I had my kids, and once for a few hours when I had biopsies when I first got sick with fibro and they thought it was something else, I have, in the past few years, been there three times.  Only once overnight, when it turned out there wasn’t actually anything wrong that they could find, then one morning for the non-surgery, and yesterday.  I can have fun any where, apparently, and did all three times, even yesterday with all the pain.

Er doctor could not reach my primary care doctor to discuss the potassium situation, for which I am already on supplements.  Soon as I can breathe reasonable well, (soon, please) I am calling a new doctor.  Seriously.  When the ER doctor calls you numerous times about your patient and you don’t bother to call him back, something is wrong somewhere.  This is about the fifth time there have been communication issues with my doctor, so it is time for a change.  And that’s the saga of the really bad, horrific, miserable pain day, which has now carried over to today.

Yes,  I am up.  Here, for your edification, is my sleep schedule for the past 30 or so hours:

Tuesday night: in bed by nine, asleep by 10 pm.  Up at 5 am Wednesday.  Back to sleep 9am. Up at 7pm. Back to sleep (on couch) 11:30 pm, up 2:30 am Thursday. It’s just about 5 am now.  Still awake, so far.

That works out to about 20 hours asleep and ten hours awake.  Seriously, who needs that much sleep, and why?  I can also just stay awake for days at a time.  ?????????

The fun is added to by the pain.  My foot hurts, my leg hurts, my side hurts, my shoulders hurt.  Walking hurts.  My neck hurts.  Oh, hell.  Everything hurts.  That’s about the size of it.  Being ill: not for the faint-hearted. Giving in, giving up, are not on.  I will not cave.  I will prevail.  I will enjoy my life regardless.  So there.

Well, not a store, but  been reading.  Four books by Lisa Lutz.  About the Spellmans.  Very funny books, loaned to me by my homemaker.  Next one up is ‘Attack By The Elfmen’ or something like that.  Don’t know who it’s by.  She hadn’t quite finished it yet, so next week.  I love my Kindle, but real books are always lovely.  Slept well, not as much pain so far.  Hoping to do a bit of cooking today.  A recipe from, my fav food blog, Closet CookingThat’s it for now.

#StandUpforEllen and Thank J.C. Penney for Making The Right Choice | GLAAD.

Yes, it’s still morning, and I’m up. Woke up at 7:30 or so. It looks like spring outside. It’s January. This concerns me, although why is beyond me. I have a link a friend sent me about foods to monitor with fibro. The only one I’ve noticed any real connection to illness is artificial sweeteners, which made my pain levels skyrocket. My homemaker bought ice cream and I didn’t notice it wasn’t made with sugar, so as I ate through the carton (come on, you know what I mean) I was in more pain every day. No more ice cream, pain went back to usual levels. Definite correlation. I’d suggest keeping track of when you eat what, and be aware of any changes, which may sometimes take a few days to appear. Nothing is easy with illness, is it? I hate keeping track of things, although I’ve been tracking my first thing before I get up temp for a week or so. It is consistently in the 96 degree range, with only once being 97 something. The average over the week was 96.5. I take a thyroid med, but I’m wondering if I need a larger dose. Once I find a new doctor, I plan to have a discussion about this. My old doctor and I are having a parting of the ways, although he doesn’t know it yet. Anyway, here’s the link:

Food and Fibro

I was. We were so poor when I was a kid, I remember one period where we had biscuits, plain biscuits, for all three meals of the day. We took them to school for lunch, even. So anyway, I’m posting this article I just found for those of you who grew up not necessarily rich, but you always knew your next meal was going to be an actual meal. I can attest to the fact that every word of this article is trufax.

Growing Up Poor