A few days in my fourth week of medication change problems

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heart addictedSuch a long title, but I can’t think of anything shorter.

Let’s see if I can spell this right again: Risperdal. Or generic Risperidone. I was on it for six months, so you’d think I’d remember the spelling, but it still mutates in my head.

My doctor started tapering me off of it three weeks ago, almost four. Today was the first day since then that I was able to go out all by myself, and even that was a bit iffy. I won’t get into everything my body has been doing since then. I have been looking for synonyms for “disoriented” just for fun. Off-kilter, out of it, unsteady, rickety, wobbly, discombobulated. I’m liking “unsteady” (a friend gave me that one when we went for a walk) because it might be a more understandable to others. I have struggled to otherwise adequately explain this most common symptom of my anxiety to others. I think I came a little bit closer a couple weeks ago when I told a friend who was visiting, “If I went out to drive right now, I would get into a car crash within minutes.”  Just “dizzy” doesn’t explain it adequately. Just saying “my brain’s not working” invites understanding nods from others (and it’s my favorite explanation for most occasions) but it isn’t an adequate explanation of the difference between a healthier person’s mind after a rough day (which brings a type of fatigue I actually wish I could have more often) and my “unsteadiness.”

Yes, I’m still struggling with simple ways to explain this to those who want to understand better. And I’ve had a lot of unsteadiness this past month, but after a better day today I am still believing that it’ll get better soon.

So, the pharmacist said today that withdrawals from Risperdall (should I spell it differently just for fun? I do think it’s kind of a fun sounding name…for medication) usually last two weeks.  I’ve doubled that. So, I could (1) be on the long end of the exception or (2) the Fanapt is causing me problems. Or (3) some other explanation.

So I know this sounds crazy, but I’m grateful for the patience this past month has been teaching me. I used to complain when I’d get one or two days of this or a week, but with an entire four weeks, I’m having to dig deeper. I haven’t been able (until today) to go to the grocery store by myself or sometimes at all. I’ve had to get rides to the pharmacy and my doctors’ appointments. I’ve had to tell myself that it doesn’t matter when, at the doctor, they said I’d basically skipped out on my therapist appointment when in reality I was fighting nightmares and discombobulated unsteadiness at home. They weren’t trying to tell me personally that I was a failure. And….yeah so I corrected them quickly and they were understanding, but sometimes I wish they wouldn’t jump to conclusions so quickly when someone might be so sick that they can’t use the phone until after the appointment is over. Geesh, I’m sensitive. Still working on that.

I’m feeling less hard on myself than I was at the beginning of the month. I’ve had to ask for so much help and yet everyone who has helped me has insisted on checking up on me and following up to see how I’m doing and acted somewhat indignant when I’ve apologized too much. This world is not all a bad place full of scary people. Why I continually need this lesson, I’m not sure. It’s incremental, not an all at once thing.

I’ve also been patient with my need for a lot of Netflix. I’m not sure how many episodes of Gilmore Girls I’ve watched, but it’s helped calm the anxiety and I’m no longer telling myself that I’m such a horrible person for watching fun stuff when I’m not feeling well. Compassion for myself has bigger boundaries than it did.

I’m refusing to edit this. I’m too tired. It’ll have to do and that’s that.

 

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Going off Risperdal…still.

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I just had a Priesthood Blessing because it’s been two weeks since they started tapering me off Risperdal and I’m still having a hard time. I was supposed to call my doctor today to ask him if this is normal (called my clinic’s hotline last night) but then I slept until 6pm, so that didn’t happen! I’d say that my days and nights are mixed up, which is true, but I’m also need a lot more sleep and that’s just as annoying.

It was reassuring when a friend stopped by today and she told me that Risperdal is hard to go off of. So this is normal and things will be okay soon.

I’ve only been awake for a few hours now and I’m still having racing thoughts. Can’t get anything done.

This is going to go away. The blessing was very specific and reassuring.

Into the second week….med changes still

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I’m a little grumpy today. As per doctor’s orders, I tapered off the second pill of Risperdall and I’m now only on Fenapt. My body is still adjusting. There is somewhere I would have liked to have gone today and there is something I will probably miss tomorrow. For some reason I’m not feeling the social isolation of about 10 days unable to do much other than two grocery store visit thanks to friends. I’ve been blessed with my visiting teachers calling and stopping by, and the Relief Society President just called me again. Last week a good friend came and visited for a while. So, there’s my answer. I know people care. One roommate did my dishes for me a few days ago and the other one took out the trash. That’s usually my job. Then there are the visits on the phone with my kids…

Repeating to myself: this will be over soon.

Gilmore Girls reruns and hours of listening to General Conference and BYU Devotionals (I also fall asleep to those) have been helpful too. I really don’t know how people handled this sort of thing 20 or 30 years ago. Lots of bad tv? 😉 A nice big window where you can just watch people and nature? I love the view out my window, but it couldn’t entertain me 24/7.

Another day of med changes

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Today is not a good day when it comes to anxiety/med changes. Yesterday was better. I feel like my patience with it has gotten much better. So glad I went out and bought a big box of gluten free taquitos and other things. They’re getting me through. Today the tremors are pretty bad, and I had very vivid dreams last night that felt real and made it hard to wake up. A friend visited me last night, and I’m glad she did. The social isolation might start getting to me if this continues. On the good side, I was so happy to be feeling pretty good last night: I got all my laundry done.

Medication Changes: that Circus

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Possibly boring stuff: all on medication

I’ve been through a lot of medication changes and they’re never fun, but switching from Risperdal to Fenapt this past week has been the most challenging change since Paxil to Effexor more than ten years ago. I’m halfway through the change. My doctor had me swap one pill a day for a week: then tomorrow it will start swapping the other pill, and thus the complete switch to Fenapt and no more Risperdal.  So why the chance? Risperdal was working great at eliminating my nightmares (along with the Prazosin that I also take) and making my days feel more like “normal” days where I can actually get up most every morning. But Risperdal made me gain 40 pounds. And yes, when a psychiatric med “makes” you gain weight, your brain chemistry actually changes and you feel like you’re hungry 24/7. I fought it pretty hard, but I was waking up hungry in the middle of the night. So, Fenapt is the new choice. I need to study up more on Fenapt. I’ve only given it a cursory, “looks safe, won’t make me gain weight.”  (Just 4 days into going off Risperdal I could tell a marked difference in how much less an appetite I had.)

In any case, this being only the second worst medication change I’ve had (maybe third….it’s been too long) is because, once upon a time, I had to go off Paxil while I had two small children to take care of. I will never, ever take Paxil again because going off it was a nightmare. I couldn’t keep myself awake and I was dizzy 24/7 and only felt safe when my head was on my pillow. Their dad ended up having to care for them for more than his share, which I never liked. I like my share with my kids. But they’re better off safe: I knew that. Wasn’t easy on him, but that’s water under the bridge.

Koosh tumblr_m28qgtGUm31qitawxo1_400.jpgThis time around it’s mostly the immense fatigue and disorientation/dizziness. The first two days after the change my anxiety skyrocketed and I was sleeping in my bed clutching my magic Koosh ball which lovingly lets me squeeze the heck out of it. I had to miss singing in church. People were kind and my friend M brought me McDonald’s, and my new roommate A let me go with her to Walmart for groceries. I missed my therapist appointment on Friday but got to make up for it on Monday. I felt so proud of myself, getting there in the 20-ish degree weather, and even more so for getting home in the 22 degree weather plus wind. The wind was killer with those temperatures: the ride and walk down was pleasant, the ride and walk back with the wind was the coldest I’ve been since moving to Utah I think. The wind will get you every time. But: I am a studmuffin. I made it through.

So I have nothing exciting to talk about. It’s med changes and I’ll keep praying that the transition goes smoothly and that it doesn’t get to me so much emotionally that I end up in a heap on my bed for the rest of my life. Nope, odds are against that…I think.

The Little Trials: Coming off conqueror?

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snowman christmas-316448_640.jpgIt’s Thursday. I just off the phone with my 14yo daughter who is, as usual for this time of night, busy with her homework. Life keeps moving.

My life view has been more optimistic since being approved for disability.  I’m not even sure I blogged about that! It was such a weird feeling: relief, but still with the unknown financial aspect that was finally communicated to me this last week. I was so happy, and the worst was behind me, but…there was that 60 day window they had to figure out what I’d get. I also was unsure as to when: so was my lawyer. Lots of big possible time frames.  I am so grateful that this is all done and behind me. I’m also grateful for the “little people” at Social Security whose job it is to do this sort of thing. Sounds like a lot of stress to me.

So, as getting around in the cold was the theme of my last post, so it is with this one. Thankfully I haven’t had to deal with the cold, biting wind again since then. It’s been cold, but without medication issues and without the wind it’s actually possible for me to walk around in the cold and even sort of like it. The past two days I did a lot of errands getting on and off the bus and walking distances of up to 1 1/2 miles/time. I’ve been feeling pretty well this week. Today I really needed to rest from it, but I’m so happy with my ability to get out and get some things done. I think that when it comes to my morale, having snow on the ground makes me happy and somehow makes it easier than just the cold without the snow, even if there isn’t a lot of it. It also helps that there are Christmas decorations everywhere. So much more cheerful.

So I’m feeling extra grateful today. Today was a clear-cut “need to rest” and also a day where I felt like I could pat myself on the back for having done some semi-hard things during the past two weeks.  I still don’t know for sure if I’ll be able to get a car with my disability back pay, and to be honest I do still have my hopes up. But….I’m getting around. I’ve been feeling kind of cut off from life again the past week or two, but with the coming holidays there are a lot of things planned, so I’ll be able to get out again.

 

 

Count the Bad, Miss the Blessing

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icy-channel-961_640.jpgIt was cold and windy today (a biting wind) and I had my usual appointment that takes about an hour of bus and walking – one mile of walking – each way. To top it off, I was going through withdrawals from a medication that I first tried to call in on Tuesday, so three days ago. I’ve been without this medication now for about 30 hours. It wasn’t the worst medication to have it happen with, this breakdown in communication somewhere between myself and the pharmacy and my doctor – but my focus was off and I kind of just wanted to curl into a ball, but that wasn’t an option.

So I had resigned myself that I needed to make this appointment, but that I wasn’t bad off enough to need a ride from a friend, and that I would make it there and back and would swing by the pharmacy on the way home.

I was at the bus stop when my roommate (really busy roommate who is almost never home) says she’s going my way and can give me a ride! Happy day! I mourned just a tiny bit the loss of the 1 mile walk from the bus stop nearest my destination. I really did. Teensy tinsy bit. But I got to sit with my roommate’s adorable dog perched on my lap and avoid that wind. Brrr. Nice warm car. Mmmm.

So I got to my destination early and had time to call the pharmacy and find out that they still hadn’t gotten a call from the nurses who were supposed to call in my meds! I was (and still am) starting to doubt my abilities to procure my meds in a timely fashion. With some, they could land me in the hospital within a couple days. I tend to forget that because most of the time I’m okay.

So my therapist is at the same place as my psychiatrist. She looks up my prescription which states that the nurses have contacted the pharmacy, which I know the pharmacy said isn’t so. Not so concerned at this point about what is so as I am about feeling like I want to roll around like a little ball the rest of the day but instead I’m chasing pharmaceutical electronic information exchanges (or the lack of them) and have been for three days.

When my therapy appointment is over, my therapist goes with me to the nurse’s office downstairs to find them all gone home for the weekend. I have no choice but to ride the bus to the other branch somewhere else in Provo where the nurses are still there to see what is wrong. Calling them on the phone didn’t work.

By this point I am doing the runaround panic sentences in my head: “Who dropped the ball wait it doesn’t matter just go get there I hate the cold today it doesn’t bother me so much when I’m not having withdrawals stupid Utah weather that I like some of the time I’m such a Californian wimp why should anyone have to take the bus to somewhere they’re not familiar with when their mind is as jumbled up as mine is but it could be worse.”  Ad nauseum for the half hour or so it takes me to get to office #2, after missing the stop and having to walk back.

Then I realize, after cheerily buying a snack at a warm gas station, that I’m forgetting something important. I got a ride to my therapist appointment!! How much colder and more confused would I be if I had had to walk that extra mile in the cold?

I confess that this didn’t get rid of all of my frustration, but I can tell you that I was more grateful than I think I’ve ever been when I finally made it to the pharmacy near home and that prescription was there waiting for me. I celebrated with McDonald’s (don’t give me a hard time….) and finally took my med and felt like I’d made it. Small, first-world problems…. Other blessings today: I have a nice warm coat. I have a hat that covers my ears, however imperfectly, so they don’t get as cold as they could.  The bus is there for me. The bus drivers are pretty much always friendly. The buses here aren’t as crowded as where I used to live.

And I could go on.

(still a little miffed, but working on it)

 

Recovering from Good Stuff

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Cinderella shoe cakeI had the opportunity to help throw a bridal shower for a friend this week. I’m paying for it, but it was worth it. There’s some more good news in that regards, but I’ll get to that later.

I had plenty of time to plan. I don’t do complicated. I also had a partner in planning who did all of the things well that I’m not very good at. If I were to be a party planner the rest of my life, I would want her for my partner. It was that much fun. She even talked me into helping her icing the cupcakes with one of those fancy icing bags. I’m better at invites and games and that sort of thing.

I have to carefully allot my time during the week, but the past three weeks have been a lot better. My doctor upped my Risperidone and it’s helped a ton! I’ve been sleepy all the time, which I think is passing as I get used to it, but I’ve been awake a lot more. I’ve had less nightmares and everything else. It’s made life so much more bearable and I’ve also been more able to count my blessings without getting as depressed. My therapist said she could tell a difference, and my friends have been remarking on it, too.

Thus, I felt I had the courage (and ability) to help throw the shower. It was also at our place. I didn’t clean much beforehand as it’s already clean here, but it could have been better, yet I survived. My “have to clean everything perfectly” anxieties were thus lessened in that area. (Our front rooms are usually clean, my room is usually messy…a lot like growing up.)

So, while we were getting ready yesterday, my mind still halted occasionally but it wasn’t bad. I could tell I was headed towards bad anxiety just a couple of times, and after either eating or taking a break I was okay again. It was such a relief! One of the things that’s difficult to explain to people about anxiety disorders is that the “usual” methods of calming oneself don’t always work. We feel “stuck” in the anxiety with very little that helps lower it.

But….not this time. Some loud music someone played briefly on their phone almost got me while everyone was talking. I was leading the game so leaving for a break would have been awkward.

I fell right asleep last night. I did, unfortunately, have a lot of nightmares last night, but they could have been worse. I still felt like I had some control of the dreams. I ended up shaky with my “insides shaking” but I had no limbs flapping. For as much as I did yesterday, that’s quite a feat. Also, I couldn’t get out of bed today until after 1pm. Considering that at times after something so large I could have been wiped out for a few days, that’s also something. I’m fully hoping to get to go for a walk later. I could really use it.

Neither tremor nor tremolo!

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hymn-lgToday has been a good day. Last week I started getting more tired again and having racing thoughts and needing yet more time at home alone and more sleep etc. (it’s all relative….some versus more). But it was frustrating, as things will be. So at my doctor’s appointment on Tuesday, he upped my dose of Respirdall, and it seemed to help almost immediately. I still can’t go just anywhere I want to whenever I want to (it’s a l.o.n.g way from that), but the blessing was that it’s better again.

So I rested yesterday (Saturday) and last night, in the hopes of making church today. And I did! I woke up around 8:30am. And I was fine. No nightmares, hardly any racing thoughts. And it was a really good day.

Best part?

For years I have avoided, whenever possible, sharing a hymn book with someone at church and holding it with them (me with one hand, them with one of their hands, for those not familiar) because my hands shake and I’m pretty sure it’s more inconvenient for them to try to read it with my hand shaking, thus shaking the whole book. If my hand is shaking enough, I’ll just hand it to them. Anywhere in between and I feel awkward.

Today in Relief Society (women’s meeting) the woman next to me offered (as usual) to hold one side of the book, and….my hand wasn’t shaking! First time in years! Maybe this Respirdall is helping more than I realized. My hands were shaking this morning while I was doing dishes, but that they can “settle down” is giving me hope.

Reasons for good and bad days can make no logical sense

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earthquakeWhy did I feel so icky today? Definitely on the worse scale of things. Like a truck hit me. I get tired of saying “shaky” when I’m realizing that there are different kinds of “shaky.”

My hearing was Wednesday. Today was Sunday. So I should have felt awful on Thursday, right? But no, my bad days were Friday and today (Sunday). No sense in it. Today is one of those days where I slept until after 3pm and I’m still wanting to go to bed right now. But other than losing most of the day, the rest of the day was good despite the anxiety and on and off stuttering and blankness of mind.

Note to self: I can do a blog post on the different types of shakiness. I’m sure you’re all super excited. You really should be.