Message in a Bottle

It’s 1:16am.  I feel like a broken record saying I have insomnia again.  Or perhaps it is painsomnia. I am hurting all over.  When I was in bed, I woke up with a start.  I felt so uncomfortable, both physically and mentally.  It felt strange.  But I’m okay right now.  My shoulder is still killing me, but maybe I could go back to sleep soon.  The pain comes and goes.  It also hurts when I move my neck a certain way.  All of those muscles are connected, I know.  It sucks.  I have a massage on Thursday to hopefully help with the aches and pain.  My massage therapist can work wonders.

I was talking with my husband last night, and he showed me an article about a message in a bottle found on and Australian beach after being hidden for 138 years (I think that’s the right number).  Then I decided we should go to California and put a message in a bottle in a tar pit,  and see if anyone ever finds it.  If they can find dinosaur bones, surely they can find a message in a bottle.  I wonder what the message would be.  Perhaps “if you find this, call me!”  But maybe they wouldn’t find it in my lifetime.  Maybe it could be a treasure for future generations.

One thing that bothered me about the article was a quote from the woman who found the bottle.  She said something about this find being the greatest thing in her life.  She is married and has a son, two things which I am inclined to believe are much more wonderful than finding a message in a bottle, no matter how old the dumb thing is.  I’ve already had the greatest day of my life- my wedding day!  It makes me so happy just to reminisce, and to know I am spending my life with an absolutely wonderful man.  That’s not to say I won’t have other really wonderful days, but nothing beats my husband.

It is supposed to snow a lot here today.  It hasn’t started yet as predicted, so I kind of wonder.  I wonder a lot.  My mind wanders around, pondering different things until I end up just staring into space. This could be fibrofog, or perhaps depression.  I can’t think straight a lot of the time; my concentration is next to nil.  My energy is depleted so badly lately.  I can’t remember the last time I cooked dinner.  Maybe over the weekend?  Beats me.  I can’t remember that far back.  My Spanish lessons are going by the wayside.  No hablo espanol.

I’m reading a book right now that I just don’t feel invested in.  I am just not feeling it at all.  But of course I have to keep reading it.  I have a weird sort of guilt if I start a book and don’t finish it.  There’s only one book I did that with, because it was so disgusting. So I’ll keep reading this one.  I think next time I’ll go with a classic.  I’m trying to be more well-read, so I’m shooting for a few classics a year.  We’ll see how long that lasts.


Insomnia, Part 2584

How many different titles can I come up with when I am up at night with insomnia?  Apparently I am not feeling very creative this early morning.  I’ve been up for two and a half hours, so I’m wide awake- well, getting slightly sleepy again- so I should be able to think, right?  I suppose I am thinking, just through a fog.  It’s been awfully hazy in my brain lately- fibrofog.  My concentration is ridiculous these days, meaning that I really haven’t had much of that ability at all.  I have to think so hard about everything I’m doing, even the simplest of tasks, like washing the dishes.  Gotta get those babies clean.

The pain is all over.  Yesterday I did some resistance training with my arms/upper back, and it hurts now.  I knew it would; this is no surprise.  But I have to strengthen those muscles, because my posture is horrible and it’s making all of my muscles out of whack.  I need to get stronger all over.  This won’t stop all the pain of course, but maybe it can help prevent some down the line, way down the line.  And the time to start is now.  Otherwise, where will I be in a year?  That’s right!  The same place, or maybe even weaker. My stint in occupational and physical therapies at the fibro clinic just wrapped up, so I’ve got lots of education under my belt now to deal with these issues.  I can vacuum now without it hurting; however, if I fold laundry after vacuuming, my back will hurt.  I obviously need to learn my limitations.

It occurs to me that I may reread this blog tomorrow and realize it makes no sense.  There may be grammatical errors and typos.  But right now, at 4:43am, I am okay with that.  I just need to write.  It’s therapeutic.  Perhaps nothing I’m sharing right now will resonate with no one, but that’s a chance I’ll have to take.

I’ve been thinking about writing a letter to myself, just a simple note to say that this is all okay.  I mean, it’s not okay that this is all happening, but it’s also not the end of the world, even when it really feels like it is.  My pain will lessen (hopefully), or at least move to another part of my body.  It kind of roves around, finding new places to settle as it wants.  The pain may not keep me from sleeping, and I’ll get a few more hours of shut-eye.  My migraine may come back, but if it does, I’m prepared.

The frustration I feel is not going to be constant.  The feeling of my muscles going cold again after taking away the heating pad is not going to last forever.  I know it won’t be too long before I can put that heating pad back and feel the warmth flood me again.  That’s such a wonderful feeling.  My cat lying on my lap makes me happy- she’s a cuddly little thing, that Sophie.  My husband will be up soon to get ready for work.  I’m glad at least he can sleep.  I don’t work, so I’m very fortunate there.

I can sleep today as I don’t have any appointments, just a trip to the grocery store to make at some point.  Speaking of groceries- ugh.  I dread the thought of lifting heavy bags and gallons of milk and a case of Snapple.  But this is the price I must pay for what I want.  I suppose to the healthy person this doesn’t seem like such a daunting task, but for me, it is absolutely exhausting.  I’m lucky if I get all the groceries put away when I get home.  I’ll just do the best I can, and that will be good enough.  It has to be.

A Productive Trip to the GI Doc

Yesterday morning I saw my GI doctor, and we actually got somewhere.  First of all, I am doing much better since my Crohn’s flare, and I’m able to go off my prednisone two weeks earlier than expected.  Thank goodness!  The stuff is driving me nuts.  But now I only have one week to go on 10mg, so that’s not bad at all.  My mood has just been all over the place.  It’s been quite depressing most of the time, but sometimes I feel especially happy instead.  So that makes me wonder- is it just the prednisone at work, or does having bipolar disorder make these symptoms worse?  At any rate, it will soon be over.  And then maybe my moon face will go back to normal.

The pessimist in me is saying that my arthritis symptoms are going to come back majorly after the prednisone is out of my system.  It’s been so nice not having crippling pain in my hands and feet, and I really don’t want to go back to that.  Perhaps this course of prednisone gave my body the relief it needed to say, get over the proverbial hump, and now I’ll be fine since the inflammation has gone down for a time.  I hope hope hope this is the case.

Other problems I talked to my doctor about included pretty bad constipation and trouble swallowing.  For the constipation he gave me a “mild” prescription medication  (his words, not mine) to help me go more easily, and in turn will help repair the tear I have down there that’s been bleeding an awful lot when I go.  It’s painful, and all that blood looks scary (though I’ve been reassured it’s nothing to worry about).  As for the swallowing, prednisone can cause thrush, which I’ve had before several times.  My body is a yeast factory.  So we’re going to try treating for that and see if it helps my symptoms.  If not, it’ll be time for an endoscopy and likely some stretching of the esophagus.  Fun times.

I really feel like we got some things accomplished.  Not all doctor’s visits are so productive, so I’m quite happy with how this turned out.  Now in two weeks I will see my psychiatrist, and let’s see if she has anything to say about helping me sleep through the night.  It’s 3:30am and I’m writing a blog instead of sleeping.  I’m thinking about doing my nails next.  The only trouble with that is what color to pick out.

A lot of times when I’m depressed I cut my fingernails down as far as possible.  One less thing to take care of, I suppose.  I recently got a ring, a cheap one, and it turned my finger green.  It probably didn’t help that I wore it for three days straight.  But it made me happy; it was so simple and shiny and pretty.  I feel like I need these little bits of happiness lately just to keep from getting too down.  I know it’s likely the prednisone making me depressed, but what if it’s not?

Usually I have to change my antidepressant every year by this time.  The winter is especially difficult for me, as it is for a lot of people.  I use a light box and try many different tactics to keep my spirits up, but it just doesn’t quite cut it.  The only trouble with switching medications is the unknown, especially if I haven’t been on the drug before (sometimes I cycle back to one that has worked for me in the past).  There’s that valley of the time between medications, weaning off of one and titrating up on the new one.  That’s rough.  But I’ll do whatever I have to do to feel better, and only time will tell.


Good Early Morning

For some reason Billy Joel’s “Piano Man” just popped into my head.  “Well, it’s 9 o’clock on a Saturday…”  In truth, if it were 9 o’clock on a Saturday, I’d be sleeping, hoping to get in enough rest to go to church in the morning.  But right now it’s 3am; I must be lonely.  Who’s lonely?  Matchbox 20?  I forget.  At any rate, it’s super early, but it’s also getting late since I’ve been up since 1:30.  I need to get back to sleep to have some semblance of a normal day.  Oh, well, I’ve got time.  Worse comes to worse, I cancel my morning appointment and sleep then.  Who needs therapy when you’re depressed? (Just kidding, seriously.)

Yesterday I had a tough physical therapy session.  I think I’m feeling that now in my back, my hips, my shoulders.  Too much of anything is no good.  I learned that from watching “GI Joe” as a kid, when they used to have those PSAs at the end of every episode.  I remember one PSA in particular: two boys were in the store getting a snack before their baseball game, and one boy chose an apple and the other, a chocolate bar.  The good GI explained to the boys why the apple was the better choice.  I don’t remember how the chocolate-bar boy reacted, but I bet he felt a little bit of shame.  Poor kid.

Anyway, yes, everything hurts.  How can I sleep with that?   I’m going to try cuddling up on the couch here.  That’s what I was doing until I decided to write this.  I needed a distraction.  I’ve got the tv on as well, and it’s just not working.  But I am getting tired!  Although we all know how painsomnia works- it doesn’t matter how tired you are, that pain will keep you awake.  I think I will skip any PT exercises for the day.  My body needs some rest and relaxation!

We’re having company tonight.  That means some cleaning and cooking are in order.  I’m not too stressed over it yet, but I’m sure I will be this afternoon.  Gotta bake the brownies, make the meatloaf, stop at the store for ketchup (for the meatloaf glaze).  I always get anxious when people are coming over.  That’s the good old social anxiety rearing it’s ugly head.  At least the Crohn’s seems to be under control, so that relieves some of the stress.

I go to the gastroenterologist on Friday, and I’m going to ask if I can cut my prednisone regimen short a couple of weeks.  Although I still have some pain, it’s nothing like what it was.  The prednisone is just kicking my butt.  From the weight gain and fluid retention to a serious case of moon face, not to mention the mood swings, I am really ready to be done with the stuff.  Of course I am concerned with symptoms coming back, but more the arthritis stuff than the Crohn’s junk.  So we’ll just see I guess.  There’s no way of knowing what will happen until I try it.

Sparkling Water

My new obsession is sparkling water.  Nothing fancy, just the flavored kind that comes in a can- water, bubbles, natural flavor.  It’s tasty and is helping me kick that caffeine habit.  I don’t necessarily need to come off all caffeine, but I’ve noticed it’s affecting my energy levels during the day- as in I’m always crashing- so I thought why not give it a go without the stuff?  It’s kind of nice not being addicted to something anyway.  Awesome.

Today is my first day on only 20mg of prednisone.  This stuff is harsh, and I can’t wait to be finished with it, but I’m honestly afraid, too.  I think my stomach is under control, so I’m not worried necessarily about those symptoms coming back.  It’s more the fibro flare that has me concerned.  It feels like it is getting worse, and I don’t know what to do about it.  I’ve been pretty good about keeping up with my physical therapy exercises, but I’m not sure if they help or not.  I do a little stretching, too, and I am sure that helps.  Also, I’m still on an increased dose of Lyrica and a muscle relaxer, both of which make me super tired.

Last night I had a bit of painsomnia, about two hours worth, maybe three.  I forget now, but the point is that it happened.  I ended up spending my second shift of sleeping on the couch.  With the heating pad wrapped around my shoulder, I laid on the couch watching “Criminal Minds” and wondering if a show like that would keep me up even longer.  Turns out it didn’t.  I started getting droopy-eyed and paused the show, klunked out quite quickly after that, and I slept until my usual getting-up time.  Of course I was exhausted again by 11am, so I went back to bed for a couple of hours.  Good nap.

So the fibromyalgia… I’ve had days when the pain has just disappeared.  Just vanished, wake up and it’s not there.  Since my pain has spread to my left shoulder now, I’m really hoping for one of those disappearing acts, but it hasn’t happened yet.  This is another thing that is prompting me to quit caffeine.  I mean, besides the crashes, I read that caffeine can make pain worse.  I don’t know if that’s true or not for body pain, but it’s certainly worth a try.  And really, diet soda is so unhealthy anyway.  I’ll still drink my iced tea, but that has way less caffeine in it.

I’ve been reading some different articles about fibro, and nothing I’ve read has given me any further insight into the syndrome, nothing that can help me right now.  But I’ll keep reading, researching, maybe throw in some prayers…  I just don’t know what to do with myself.  All of this nonsense makes me anxiety worse.  I lay down at night with heart palpitations, and it takes me a few minutes under the weighted blanket to relax.  It seems so stressful wondering whether or not the night is going to hold some peaceful sleep or maybe a little sleep and a lot of pain.

Getting Better?

It’s been just over three weeks since I was started on prednisone for my most recent Crohn’s flare.  I feel a vast improvement in symptoms.  There is still pain, but it’s random and that is pretty normal for me.  I seem to always have some symptoms, but at least the worst seems to be over with for now.  Unfortunately I have the dreaded side effects of the prednisone to deal with, the irritability and down moods and mood swings.  Eek.  And I gained 10 pounds.  Good grief.

Now it’s the fibromyalgia again.  My body just doesn’t want to cooperate with me for too long; it gets bored, I guess.  Since last Sunday I’ve had really bad pain in the right side of my neck, down my scapula, and into my shoulder, radiating down my arm.  I’ve used creams, my handy-dandy heating pad, a splint (which has actually been the most helpful so far), a muscle relaxer, and tramadol.  And you know what?  Tramadol sucks!  I think the pharmacy actually gave me placebos, and I’m part of some secret government study on pain relief.  My house is probably bugged so they can keep track of how often I complain about my pain.  Yes, I’m sure that’s the problem.

At any rate, I can’t sleep.  I’ve been up since 1:30am, and I’m starting to get quite cranky.  Maybe if I take just the right combo of meds, it’ll put me back to sleep.  Even just half a muscle relaxer would probably do it.  But will that then make me groggy for the rest of the day?  I’m certainly not going to church now at this point, so I’d have plenty of time to sleep before lunch at the mother-in-law’s house.  Yes, I think I’ll try that.

So what about the weighted blanket, you ask.  Well, it seems to have been a good investment.  I slept with it for three nights with a marked improvement in my sleeping patterns.  (Until tonight, obviously, but the blanket doesn’t relieve pain.)  It has helped me fall asleep faster and stay asleep longer for my first shift of the night.  Then I get up, go to the bathroom, and can actually fall back asleep when I lay down again.  It’s truly amazing.  I like the comfort I feel underneath it when I’m reading before I go to sleep at night.  If you have anxiety, I highly recommend getting one.  I was told to get a blanket that weighed about 10% of my body weight, and then minus a few pounds because of the fibro.  I ended up getting a 15-pound blanket.  I think perhaps 12 pounds would have been enough, but 15 seems good.  My husband lied underneath it to see how it felt, and he made grunting noises as he moved around, acting like it was the heaviest thing ever.  What a ham.

So that’s the story.  Crohn’s flare, fibro flare, insomnia.  At least my belly is feeling mostly better, which was no small feat and continues to be mentally taxing.  Fibro, what am I going to do with you?  You sneak up and surprise me whenever…  You’re like hey, you’re feeling all right?  Let me take care of that for you.  And bam!  Eight days of pain and counting.  I really just want to go back to sleep.

Fibro Flare, Again

It’s 3am, and I hope you are all sleeping.  Me, I’ve been up since 1:30 with a lot of pain in my shoulders, especially the right one.  The pain started in my neck and slowly spread under my wing and down around my entire shoulder.  It throbs, stabs, aches, and nothing I take helps.  I haven’t tried an opioid yet, but I’m getting to the point where I might give it a whirl.  See, I’m bad- I kept my leftover pain medicine from my back surgery, so I have a few around.  Shh… don’t tell.   I’ve often heard that opioids don’t work well for fibromyalgia pain anyway.  It’d probably just give me a headache as it often does.

Tomorrow I have an appointment with my massage therapist, and I’m hoping she can work out these kinks in my neck/back/shoulder.  She’s extremely good at what she does, and I think a little extra tip might be in order if she can handle this pain for me.  It’s so tiring to be actively hurting.  Later today I have an appointment, and I’m hoping I’ll still be able to make it.  If I went to sleep right this second, I’d get another nearly 5 hours in, but that’s not going to happen.

What to do with myself.  I’m starting to get tired again, but not enough to sleep through this pain.  So, I went online and ordered a duvet cover for the weighted blanket I’m expecting to be delivered tomorrow.  I got free one-day shipping on it; how cool is that?!  So yeah, that’s the big excitement so far for Wednesday.  I’m really looking forward to trying out this blanket.  It’s supposed to be really good for anxiety and help promote a good night’s sleep.  I was told to get a blanket that was about 10% of my body weight, but then a little bit lighter because of the fibro, so I ordered a 15-pounder.  Hopefully that’s not too heavy.  We’ll see, I guess.  I’ll let you know what I think of it.

I watched the latest episode of NCIS on the handy CBS app.  Then I yelled at my cat for walking around on the kitchen table, a major no-no.  Now here I am with you, hopefully not boring you to death!  I am bored.  I have Billy Joel’s “Piano Man” stuck in my head.  Maybe I’ll just camp out here on the couch tonight.  It’s not the most comfortable place to rest, but it’s better than bed right now, and those are my only two options.  Plus, I don’t want to keep getting up and down and disturb my husband.  He usually sleeps through my middle of the night awakenings, but not always.  He doesn’t sleep enough as it is, though, so I don’t want to make that worse.  Although, honestly, it would be fun if he were up with me right now.  We’ve started watching “The Office” on Netflix, which we’ve already seen, of course, but it’s fun to go back through it.

Since I’ve been on prednisone for the Crohn’s flare, my body was feeling pretty good up until Sunday morning when I was awake half the night with pain.  It’s just getting worse, and I don’t know why.  I’ve tried everything I can think of to make it feel better.  One thing I’ve found that helps is wearing a sling for a little while.  That really gets the shoulder rested up and then it doesn’t hurt as much.  But it’s quite inconvenient to go around with your arm in a sling, as you can imagine.  But oh, well, what can you do?  I guess I’ll stop typing now and put that darn thing back on again.  Sweet dreams, everyone.