Early Riser

It’s early in the morning, much earlier than I usually get up, and I’ve already been up for over two hours.  I woke up with a migraine and hip and back pain.  Not a fun way to start the day.  So I slipped out from under my weighted blanket (no small feat!) and came out here to the living room.  At first, silly me, I didn’t think I’d be up long, so I left the bedroom in my shorts and t-shirt that serve as my pajamas.  It wasn’t long before I greatly regretted that decision and snuck back into the bedroom quietly to change into warmer clothes.  After having some cereal, I curled up on the couch with my heated throw, my heating pad, and my little heat-generating kitty.  She is always very clingy in the morning.

Soon I felt a bit better, although my head still hurts.  I had my Botox injections yesterday, and they take a while to kick in.  I am beginning to get really tired, and I was considering going back to bed, but then I thought I might as well wait until I’m exhausted.  That makes for better sleep.  My husband is getting ready to go into work early today.  He got up at 4:30 and ran on the treadmill for a bit.  Soon he’ll be leaving; soon I’ll be all alone for a while.  Then my sister is coming to visit!  Yea!

I’m feeling a bit discombobulated lately.  Yesterday my fibro fog was out of control.  Every time I started to do something, I had to stop and think about what I had been doing, try to remember, get back on track.  I wandered off track so many times I lost count!  I had some moments of clear-mindedness, and there were some tasks I completed from beginning to end without problem, but overall, it was a mess.  How will I know when I develop Alzheimer’s when I already can’t remember to put my shoes on before leaving the house?  I think a lot of people with fibromyalgia ask themselves this at some point.

Last week I was at my rheumatologist’s office and asked the doctor to change my main medication.  She then decided that since I have Crohn’s disease as well that it should be the GI doc’s decision.  I left there annoyed but called the GI doc right when I got home.  The receptionist said she could get me in on January 3rd.  I just about blew my top!  I need to change medications, not sit here twiddling my thumbs for 6 weeks.  So I told her that I really needed to be seen and would see anyone who can help me.  I’m glad to say I got an appointment for next Wednesday, but it’s with a nurse practitioner I don’t know.  Is she really going to change my medication for me, or pass the buck like the last person?  I am slightly frustrated.  But I will advocate for myself.  I am not waiting until January when I will just likely be a lot sicker then.  So yeah, watch out infuriating healthcare people.

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Diamonds & Terra Pods

To my delight, my mom has decided I don’t have to wait until she dies to inherit my great-grandmother’s diamond ring.  I think the only thing that changed her mind is that she just doesn’t wear the ring; it just sits in her jewelry box.  What a waste.  So I am waiting for her to bring it to me, which could be soon, or it could be months from now.  Who really knows?

My great-grandmother was a very important person to me.  We had always been close, much closer even than I was to my own grandmother.  I would love our visits to her house in New York state, spending weeks at a time alone there with her over the summers.  She taught me how to play black jack, often times calling it the more innocuous name of 21.  We went to the local baptist church on Sundays and then out for lunch to Friendly’s.  A lot of times my older brother would be there with us, as well.

Time passed and we all got older, and my great-grandmother developed health problems and eventually dementia.  My aunts, uncles, mom, siblings, and cousins all took turns taking care of her as she could no longer be left on her own.  One night while my aunt, a nurse, was there, my great-grandma passed away.  I was 20 years old and devastated.  I miss her to this day, always will I think.  Some people leave an indelible imprint on our lives.

At any rate, I hadn’t meant to make this a depressing post.  It’s really not- it’s meant to be an ode to a wonderful woman, and an expression of joy that I’ll get to wear her wedding ring every day.

On to a different subject: terra pods, the newest in vaping.  So it turned out that the type of medical marijuana I wanted came in a new vape system, aka, a terra pod.  Something about ceramic, more even heating for faster, easier draws.  And here it’s a little cheaper!  So I got myself some Dark Bleu Cheese and felt elevated.  Not anxious, not tired, but not motivated to do anything either.  This might become a lazy day toke rather than an everyday kind of thing.  I am definitely into the terra pod in general and would recommend it to my fellow patients (or in some lucky states, recreational users).

 

Feeling Lonely

It’s 5:40pm, and I’m ready for bed.  I’m trying an experiment with not having caffeine past 2pm, and boy, is it rough.  I am a caffeine addict, definitely, and going without for all of those hours before bed, simply in hopes of a more pleasant bedtime experience, is like torture.  The torture continues when I go to bed and can’t sleep, despite having taken enough medication to put a horse to sleep.  Okay, maybe not a horse, but you get the idea.  I just discussed this sleep issue in my last blog, so why rehash it?  Let’s not.

Today has been a long day.  I woke up earlier than usual, and it feels pretty crappy now when I have to stay up longer.  I almost got all of my steps in today, which isn’t too many.  My goal is 3K, and I’m not sure if that’s ambitious or not considering the health problems I deal with on a daily basis.  It’s probably not.  Maybe 5,000 would be enough.  Enough, a word I struggle with often.  I want to be more than enough, do more than enough, but I never seem to have the energy.  My house could be cleaner, I could weigh less, I could be a better friend, daughter, sister, et cetera.  I could put that stupid puzzle together, the one that’s had its border done for at least a couple of months, the rest of the pieces placed with care above it.  It’s laid out on a card table in a craft/painting room that rarely gets used.

What is the point in this lament?  For one thing, it’s keeping me awake and occupied.  And it’s more productive than online shopping or looking at Facebook.  Earlier today I looked at Facebook for about 45 minutes, which is a very long time for me.  It was interesting for the first few months, and then I was just numbly staring while scrolling thought the rest of it.  I looked at the page of a guy I knew had a crush on me in high school, although I always ignored that little part of our friendship.  (And I felt really guilty about that.)  Anyway, he’s happily (it looks like it, anyway) married and has two kids.  Good for him.  So anyway, I don’t really want to look at that crap again, but it does pass the time.  I’m such a good time-waster.

My overwhelming feeling of apathy (can a feeling of nothingness even be overwhelming?) that’s been present for months has seemed to shift into a more depressive state.  I’m just on day two of the med change, and I’ve decided that, for now, being slightly depressed is better than feeling nothing.  Although it does make me want to smoke cigarettes.  Don’t worry, I won’t.  That’s really the last thing I need.  I just want my husband home (he’s off getting my car fixed, good guy that he is) and to hang out and watch TV and play cards or something.  Some together-time would do me good.  I was even thinking about going to the sewing group at church on Thursday.  I can’t quilt or anything like that, but maybe they’d have something else for me to do.  At the very least, it would be some socialization, which I seem to desperately need.  Writing a blog doesn’t exactly fill in the loneliness, but it did help somehow.

Little Sleep, Little Solace

Last night I took my p.m. medications, vaped some relaxing katsu bubba kush, and laid down in bed with a good book.  Normally, it would have taken me anywhere from a half hour to an hour to fall asleep.  I hadn’t had caffeine since 3p.m., and yet I lied there awake for hours.  I vaped a little more, took an extra half dose of sleep medicine and another muscle relaxer, and that finally did the trick.  Don’t worry, I was prescribed this amount of medication before, so I know it’s doctor-approved.  I’ve just been trying to cut back lately, because usually the pot does the trick.

It could have simply been an off-night for me, but I think it’s my brain chemistry getting mixed up.  Yesterday morning I started cutting my antidepressant in half so I can wean off of it a bit before I start my new pill on Monday morning.  The psychiatrist said I didn’t need to wean off the Trintellix, but heck, I had a crazy reaction when I started it and again when I increased the dosage- so don’t you think I would react in some way (a bad way) if I just stopped it cold turkey?  Come on, doc, get it together.  So he’s starting me back on Pristiq, 50mg to begin with, and then we’ll see.  We chose Pristiq together, because I had success with it before at 100mg.  I go back to see him in 4 weeks.  Ugh, changing medicine is for the birds.

It seems like every year I have to change my antidepressant.  This year I didn’t- I went off Geodon and on Latuda (mood stabilizers, although Latuda is also marketed for “bipolar depression”).  I wonder if they should have changed both medications.  After my hospitalization and heady experience adjusting to Latuda, I felt better, but only relatively so.  I never got back in that “normal” zone.  I know bipolar never disappears; I’ll always have some mood swings, fluctuations in energy and happiness.  But this time my med change led me from severe depression and agitation to apathy and low energy.  My mood doesn’t change too much.  I’m pretty much just blah all the time.  I find little solace in “blah.”

Good grief, my anxiety has been through the roof since yesterday.  I’m always at least a little bit anxious, but wow, this is bad.  Thank goodness for medical marijuana.  I think I’ll go vape a bit and lay down, read a book.  Or perhaps “NCIS” reruns.  That’s always a good time.

So Much On My Mind

It’s 2:31am, and here I am at the computer, letting go of some of the things that are on my mind.  Or at least trying to let go.  I am having so much pain these past few days from the fibro, and it’s driving me kind of nuts. At night I wake up every hour or so, because my body hurts and I need to readjust.  But there is just no comfortable position to lay in.  The back left of my head is still hurting from the first ablation I had done three weeks ago.  Both shoulders hurt because, well, that’s just what they do.  My left hip has been bothering me for some reason, and the tops of my ankles/feet hurt like crazy.  So yeah, I would call this a flare.  And the irony of it all is that I just re-increased my dose of Lyrica.  Well, a fat lot of good that’s doing me.  I’m taking a dose of 75mg in the morning and 150mg at bedtime, whereas before I was taking it three times a day (which made me extremely drowsy).  I hope this gives me some reprieve soon.  At least a little bit.  On top of that, my carpal tunnel syndrome has been a lot worse lately, and that’s got me worried.  My grip is still good, so I don’t think I need surgery yet, but I feel like that day is coming.

I went to the psychiatrist last week, and I was honest about how crappy I was feeling.  An increase in my medication helps for about a week, and then I just start sliding back into depression and weepiness, or that ever-so-lovely feeling of anhedonia.   The doc said I’m maxed out on my meds, so if I’m not feeling better when I go back to see him in a month, it’s time to switch things up.  That is a devastating feeling.  I’ve been on Latuda since March, constantly adjusting it since I started.  It’s been a wild ride and not an enjoyable one.  This medication is FDA approved for bipolar depression, and it’s doing a really shitty job.  I’m on an antidepressant, too, and the Latuda was supposed to supplement that, plus give me some mood stabilization.  Changing psych meds is so difficult physically and emotionally, so I really hope I don’t have to do that.  At this point it’s looking like I will.  It’s such a drawn-out process of misery, I loathe to go through it again.  But it would be even worse to stay stuck in this rut, especially with the shorter days already starting.  Which reminds me!  It’s time to start light box therapy!  I’ve got to get that thing out.

One thing I’ve got going for me is my supportive husband who doesn’t push me too much.  Yesterday I felt like poop from the time I woke up, which was really late for me, and I didn’t do much all day.  I put dinner in the crock pot in the morning, got a shower and did some dishes after lunch, and changed the sheets on the bed late afternoon.  So it wasn’t a totally unproductive day, but what I really needed was some time for self-care.  I went from sitting up to lying down a zillion times; my head was too heavy to hold up for long.  And it helped.  Although here I am writing a blog in the middle of the night.  Well, you win some, you lose some.

Hypo!

Yes, I think I am hypomanic!!  I had a horrible night’s sleep last night, woke up super early this morning with a nasty headache, had a really busy and productive day, and I still have energy to burn!  This is so not me.  Well, it used to be me, like when I was a teenager, but not since then.  Except, of course, during other times of mania.  This is not the chronically-in-pain and -fatigued me I’ve grown accustomed to being.  Maybe I should have my thyroid checked again, but I don’t think it’s been long enough since my last blood test.  Every time I have it checked it comes back as being overactive.  Then why aren’t I losing weight?  Ugh.  Probably because I haven’t really been trying.  But you know what I mean.

As I write this, I am wondering if I should actually publish it.  But hey, why not, right?  Maybe someone else out there is feeling a bit over-the-edge.  It’s not the most comfortable feeling, unless I am up busy doing something.  I tried to rest for a bit this afternoon, feeling a bit tired after my busy morning, but eh- couldn’t relax.  I’m wondering when I should try to hit the hay tonight.  It’s a bit anxiety-inducing to go to bed thinking it’s just going to be another horrible night’s sleep, but I am really not feeling that optimistic right now.  If my husband were home at the moment, he’d put me in a good mood.  That man can sure make me laugh, even when I’m crying.  Not that I’m crying right now, mind you.  But I might before the night is over.  Rapid cycling!  It’s no picnic.  Thank goodness I see my psychiatrist next Monday.  We’ll see what he says about all of this nonsense.

Today I went with a friend from church to visit my husband’s great-aunt who is in a nursing care facility.  She has dementia and some other health problems, including being old.  She has lost her short-term memory; we had the same conversation several times over the course of an hour.  And then I thought she might be tired, and it was almost time for her lunch, so we said good bye for now.  I’m reminded of how my great-grandmother was as she aged.  She had vascular dementia and it was just so sad.  Now my grandmother has Alzheimer’s, has had it for 11 years.  She’s outlived the doctor’s projection, but it’s not a good life.  I want to go see her more often, but she doesn’t recognize me at all and is startled when she sees me.  It’s really sad, and I feel awful when I scare her.  She requires constant care and can do nothing herself.  I just hope she isn’t aware of what’s going on anymore.  And no, I have no chance of not losing my marbles when I get older.

Boy, that was a mood dampener!  Enough talk about horrible diseases.  Well, maybe. Sure, let’s talk about a disorder instead, like occipital neuralgia, in particular, radiofrequency ablation.  Ouch!  My damn head still hurts like hell!  They said a “few days.”  It’s been 8!  Granted, the first few days I was just dealing with a numb head.  That was certainly easier to take than this.  I can barely get my hair washed in the morning, and drying it is nearly impossible.  And I just mean with a towel, so my hair’s not dripping all over the place.  This stinks.  I took some percocet today to deal with the pain, and it helped somewhat.  As long as I don’t touch it, it’s not too bad right now, but I do, at some point, have to lay my head down on a pillow to sleep.  I can lie on my right side, but my right shoulder hurts from the darn fibro…  a rock and a hard place.  Otherwise know as my left and right sides.

Wow, it’s really getting dark outside.  It’s supposed to storm all night here.  Hopefully I’ll sleep through it like usual.  My husband says my snoring doesn’t stop for thunder.  Perhaps we could have a competition, my snoring and the thunder.  Who’s loudest?  Who sounds more like a chainsaw?  Who can go the distance?  I’m voting for myself.

Let’s Try Again

So the last blog I wrote was lost due to a frozen computer, or maybe just a frozen webpage.  At any rate, that was last week, and a lot’s happened since then.  I had a birthday (yea! 29 again!), got a new vape cartridge (yea! medical marijuana!), had a radiofrequency ablation done to the left side of my head (yea! no, ouch!), and now have a migraine.  No yea! for that one.  It’s getting better, since I’m no longer feeling sensitive to light and sound.  My head just hurts.  So hooray for medicine!  Ahh ha ha!

No, I’m not manic.  In fact, I recently had my “FDA approved for bipolar depression” medication increased due to depression.  And!  I just remembered to call the psychiatrist to get a prescription for the next higher dose.  I’ve been at a crossroads dose the past week and a half, and now I’ll be moving up to an actual prescription dose.  No more cutting pills in half!  Hooray!  It’s the small things in life we have to be thankful for.  And the big things.  But mostly the small things, since they happen every day.

I had an excellent birthday.  My husband took the day off of work to spend it with me, which was just so sweet.  The day started with birthday cake and presents for breakfast.  Then we just hung out for a bit, then went out to lunch at a place that has- gasp!- gluten free hot wings and quesadillas!  I was just so excited.  It had been about 5 years since my last bites of those goodies.  (Eating gluten free is not the most fun thing to do.)  Then we went to the dispensary to get a vape cartridge for a strain that had been highly recommended to me, and it is pretty nice.  After that, we pretty much just stayed in and had a relaxing rest of the day.

My friends, let me tell you, having a radiofrequency ablation is not the most comfortable procedure.  Now that it’s done, my head is half in pain and half in numb.  Yes, I said in numb.  And in two weeks I’ll be having the other side done.  Ouch again.  I’m not looking forward to the procedure, but I am looking forward to the relief I’ll hopefully feel when it’s done.  And healed, which will be several weeks.  I sigh.  I’m so tired of this kind of stuff.  It’s all too much.

Has anyone read The 100-Year-Old Man Who Climbed Out the Window and Disappeared?  It’s by Jonas Jonasson, and I highly recommend it.  Who would think the adventures of an old dude would be so fun and hilarious?  Oh, my.  Every night when I go to bed, I read for a bit to relax.  But this book is hard to put down!  It keeps me up late!