cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Catching up on my Reading Page again. 

Things have calmed down at home for a little while, and now my parents are almost "getting along." And that scares me. Turns out they're not getting the divorce now, so this whole process of things being "fine" and suddenly chaotic (which spins out and affects other people) is going to repeat itself. It seems like it's continuing to get worse, too, but sometimes things get worse before they get better? ...Yeah, I doubt that's the case here, though I can't predict too much with the observation of it getting worse. 

Agh, now I have that restless depressed feeling and don't know what to do about it. 

Michael just went to his internship. Today is the lab work day. Last time he spent it dealing with liquid (for DNA I think) and labeling vials. I'm assuming today won't be much different. Before he left, we watched a couple more episodes of Steven Universe, and WOW, I keep forgetting how comforting that show is. Watching it for me is kind of like being reborn and forgetting a bunch of social norms I barely knew I had. It's hard to explain.

My face is breaking out again, and this began soon after I stopped taking the low-dose antibiotic. My dermatologist thought that at least some of my facial skin problems were related to the MCAS, especially because my skin appears to be doing a thing that involves cells that closely interact with mast cells (or something). I forgot the name of the condition, but it involves continued flushing. My doctor prescribed the low-dose antibiotics because not only does it help with my specific skin issues; he's also seen research on it improving MCAS symptoms. I'm bad at noticing changes in symptoms, so it's hard to tell if stopping it did anything that isn't skin related, but I have been getting more bad headaches lately... I'll try to keep that in mind.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
So I finally started my period again about a month after my eighteen-day period that began three days after another eight-day period.

Menstruation talk )
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Things have been going downhill mood-wise. I think I need to get out of the house, but even outside the house feels so limited. And since I'm already outside the house, how much better can anything get? 

Anyway...

I woke up during an intense dream (what's new?) where I was being chased and started falling down the stairs, grabbing for window shades to catch myself or break the fall or something. (I agree, there could've been better things to grab onto.) So there I was, hanging on the shades. After a few seconds, I thought I'd look below me, especially since the shades could've broken any second, and... saw my bed. I wasn't even hanging; I was sitting on my bed and pulling at the shades. I quickly let go so I wouldn't break them (good thing I'm not strong or heavy) and... let myself process everything for a few minutes. I'm sure there was some giggling mixed in there, too. 

Well, remembering that helped my mood a little.

It can be really confusing to find the line between doing things in your sleep and hypnagogic hallucinations. Often, if I'm doing something that that specific and intricate (sitting up and grabbing onto something that was to the side of me because of specific events in a dream... even pulling at the shades), it means I'm further on the awake side. So the dream might've been halfway woken me up and continued in a hypnagogic hallucination. Was I sitting up and grabbing at the shades before I opened my eyes, so the dream was existing without vision to aid it, or did I open my eyes at some point and see the shades while the dream tried to fill in the details? (This probably makes no sense. Don't bother reading it again.)

I'm wayyy too interested in dreams, though I've never spent much time looking into them, unless we're counting the sleep phase sections of psychology classes and narcolepsy research. But I've read about weird occurrences like this with narcolepsy. Apparently it's much more common in people who have the disorder (and possibly other sleep disorders), though everyone can get them, and there isn't always a diagnosis behind it... at least based on what I've read so far.


cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I don't have much to say about today other than the fact that I've been doing better than expected today. Maybe it's because of zoning out, but... I don't think it's that bad today. Of course, that makes me worry that I'm going to blow up later, which is likely. I don't know. This is weird.

Partner is still at the beach. I went on a walk--movement suggested for me to do after surgery--with my dad. It helped me realize that my legs are still wobbly, and I wasn't doing as well as I thought I was, but it was nice to move around for once. Now I'm still hooked up to the bone stimulator and just got the PICC line running. At least these things are a good excuse for not moving or trying to get much done around the house. 

Now I'm back to BDO and phone games, both of which require me to do nothing and just wait sometimes. Then I don't know what to do (orrr start writing this post).

Since I mentioned getting stuff done around the house, maybe I'll go more into that and at least stop avoiding thoughts about it. The whole house is a mess. Honestly, I think most of my family has given up on it. That includes me. I don't know the last time I had a clear head and motivation to work on something. Doing 5 minutes of work at a time worked at first... now I'm having a hard time doing that, or even looking in different directions. Now, fixing all of these messes sounds impossible.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Wow, I usually wouldn't be saying this after being kind of inactive on DW for this amount of time, but a lot has happened over the past... *checks date of last entry* two weeks. Here I am already stressing over how to word things. Plus my hands are apparently really shaky today, sol typing to begin with is a challenge. My "editing" (even though I try not to care about that on here anyway) can be fixing all these typos. 

I've actually been here silently trying to catch up on people's posts. Today, I finally read (or skimmed or skipped posts about things I wasn't familiar with enough to understand) through everything, and I'm back at the front of my reading page. My next step, because my brain gets angry at me for not doing things in a specific order, is to go through and hopefully finish responding to comments. I don't know why they scare me so much. Actually, while going through my reading page, I found several posts that I felt like I could comment on!!! What happened? With the amount of time and energy it'd probably take, and all the other things I've been trying to get done, I put it off for the time being. Just thought I'd say that in cause it meant anything to anyone.

For some reason, I'm allowed to write this in the middle of the reading/responding to comments process. Just want everyone to know that I want to and will (unless something new stops me) at least read all of them. 

Anyway, yeah, things have been busy. And at the same time, there is never enough going on. I'm still in recovery from getting a C1-C2 fusion along with a bone being removed to aid the infusion and allow spinal fluid to drain more easily. (There was a name for the second part, but it's really long and never sticks in my head... unlike the spinal fluid.) Then I've been spending a lot of time either zoning out (more than usual) because it's the time of the year when my FP, who is also my partner, has to spend a lot of time away. The hardest part of that for me is him going on the yearly beach trip with his family and some old friends. Yes, I'm aware that none of that makes sense. In the waiting period after the surgery and before the beach trip, I've been sleeping, obsessively getting into phone games (it's been a while), and trying to catch up with what people have posted online. 

Wayyy too many words about my surgery and post-surgery experiences )
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I think I've been letting myself sleep too much lately. In a way, I'm kind of happy that I can sleep pretty much whenever I want to. It means I can freely skip through different periods of time and remember even less of what happened. That doesn't mean it's improving things, though.

I'm currently sitting at my desk (instead of on the rug sleeping) in a quiet house next to an IV pole with a pretty-much-empty bag of fluids. Not much longer, and I'll be free to walk around without dragging this giant pole everywhere. Too bad I don't feel like doing anything... except sleeping. I don't know what else to do. Nothing is going on in my brain right now, and I don't have anything that needs to get done asap. (This reminds me that my spaces in the house are a mess, and I have baskets of clothes to fold, but it's all stuff I can't get myself to care enough to do.)

Went up to 300mg of Lithium today. No difference so far... as far as I can tell. Or I think that happened. All this sleep (especially with narcolepsy/other sleep variances) is messing with my memory. It's hard to tell what has actually happened--like even harder than usual--and what is a false memory generated by a dream. 

Okay, just got unhooked from the IV line. I have a little motivation now. Maybe I can get myself to do something... but what? It's already almost 8PM.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I didn't think that Vyvanse was helping that much, but switching from 50mg once a day to 30mg twice a day seems to be making a huge difference. Falling asleep is even easier than it was before, and being depressed, I've been taking that to my advantage. Now, when I'm stuck at home for most of the day, I spend a lot of time sleeping. I guess I got used to the effects of the other dose because I don't remember fighting quite this hard to stay awake, even when I was unmedicated. At least this shows that something is working. I need to contact my psych nurse (who seems to know more about narcolepsy than my sleep specialist did), but I've been lacking so much energy and motivation. Since much of my depression seems dopamine-related, I might be going downhill in that area, too. I don't think the adrenaline rushes have been that bad since changing the dose, though.

cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Yesterday wasn’t bad, and last night was one of those nights where I became more and more awake as time went on. Around 6AM, I was much more awake and motivated than usual, and since I obviously wasn’t going to sleep, I got up (well at like 9-10AM) after playing some mystery/puzzle game I impulse bought on my 3DS. Annnd I still feel surprisingly good and alert just… restless. But when am I not, especially around this time of day?

My brain, deciding to actually think today, did the thing where it came up with a bunch of ideas… I think. I can’t remember.

I also posted a bunch of random stuff on my Twitter account because my brain has decided that that’s where I’ll post “super casual” stuff (No Exceptions). My brain likes to do this weird thing with grammar/punctuation rules: Each site has its own rules that can get really… specific. If I don’t follow them, I don’t know… It sounds extremely overwhelming and like I’ve lost even more control. I can change them (or slip in an experiment with different rules), but all real changes have to be official and a choice I’m 100% okay with making. It’s weird. I know.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I’ve been on nebulized cromolyn for a while (kind of?) now. I think it’s been causing the nose bleeds, which have been fluctuating in severity. Honestly, I thought they were improving for a while and thought that maybe I was getting used to the medication. Then they got much worse, and now my nose is almost constantly bleeding throughout the day. (Like almost every time I look in the mirror, I can see blood coating one of my nostrils.) Obviously there could be a lot of explanations. For example, my dad said the heater was really messing with his sinuses, and a lot of people get nosebleeds at this time of year. Then there’s the fact that I’ve been taking plaquenil for a while now, which often causes easy bleeding. Heck, it could be a mix of things. I just think I remember it starting/getting much worse when I started nebulizing.

I’ll probably try decreasing the dose and see what happens. So yeah, if anyone has experience with this med, I’d be interested in hearing about it!! (Just keep in mind that I’m really bad at responding but would appreciate any input, even if it’s just a few words.)

Originally posted on Tumblr.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I often get mechanical allodynia on patches of skin (though it can be all of my skin if it’s lightly rub repeatedly). But now, it’s going down the middle of my spine. Any movement of my torso or movement of my shirt against my back causes a surprising amount of pain. Time to just sit completely still I guess.

I also can feel a bump going along my spine near the painful area. I’ve had a pretty big cyst on my spine before, but this is much smaller and feels more like it’s on the surface of my skin. It kind of feels like a mosquito bite, so yeah, probably unrelated.

Originally posted
on Tumblr.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Ugh. I’ve been feeling pretty bad physically for a while now, and for some reason, I’ve been ignoring it. Only recently realized that it may not be from recent changes in medication–but dehydration getting worse. Come to think of it, I haven’t been keeping up with the daily 2+ liters of water with around 8 grams of salt. There’s just so much to keep up with, and now it’s even more difficult to drink because my stomach especially hates water when it’s nauseas.

Along with constant mild nausea (that gets worse when I move, shift to a more upright position, or talk), I’ve been experiencing more muscle aches, dizziness/vertigo, and especially tremors and weakness. Honestly, I’m having a pretty hard time walking now due to how weak and wobbly my legs are. I’m also having a harder time than usual doing anything that requires fine motor control because my hand just kind of jumps around everywhere. These things make it even harder to get food without feeling horrible or spilling things everywhere. But I have a really hard time asking for help, especially when everyone else in the house is busy.

Ugh. Why does getting a PICC line have to be so complicated...?

Originally posted on Tumblr.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
SO it looks like the Prozac might actually be doing something. And that’s really surprising because I’ve tried a lot of medications, only a few of which were effective. I still think I have more of a variety in my mood, can think more clearly, and have more mental energy. Honestly, one of the most noticeable changes might be the lift of heavy fogginess in my head. Things also seem slightly more “colorful” and full of energy than before, and now my body seems to think that I only need 5-7 hours of sleep at night. Not sure if that’s a good thing.

One downside to having more mental energy is the moodiness. On days when I do have more variety in my mood, I can often get weepy or frustrated very easily. And that means I have to be more careful with splitting and black-and-white thinking. I think being stuck in such a low-energy state has helped me keep my emotions under control.

My psychiatric nurse also decided to prescribe me some low-dose lithium. That apparently can help with a variety of things.

I really appreciate my prescriber for not limiting me to small doses because of my weight. A lot of doctors I’ve been to have done that. Even if it’s a good idea, I’ve noticed that I often need much higher doses than expected to feel an effect (though there might be one or two meds that affect me more than expected). I’m supposed to continue sending her updates, and she might consider going up to 100mg (I think) because around 60-100mg is typical for the treatment of depression + OCD. I think she’s planning to slowly increase the lithium while keeping it at a relatively low dose.

If the Prozac is what’s improving my mood now (and I really think it is because I don’t think I normally feel this okay--especially in winter), it didn’t start helping with the depression until I got to about 60mg. Hopefully increasing the dose will improve my mood because I’m still not that functional like this.

Originally posted
on Tumblr.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
The past few days have been good to me... or at least I can see them as being good to me now. I've still be feeling pretty bad physically but have definitely been feeling better than usual mentally. I've also been sleeping less--a lot less. The amount of sleep I need--or the amount my body thinks I need--seems to depend on my mood, which isn't surprising. But I don't usually naturally sleep for 5-7 hours. Not often. I also think that I started sleeping more when we had to decrease the dose of the new medication. Now, I've been on a higher dose for a while, and I've started another medication that could be increasing the effect of the first one. 

I'm still feeling pretty flu-like, but that's not surprising considering it's winter and about time that I start feeling worse. I do think this medication is doing something for my mental health, though, and a small fraction of the meds I've tried have done anything. So that's promising. Normally, around this time, I would have a hard time moving and probably couldn't think clearly enough to type this (not that my brain is that clear right now). I didn't think progress would be this easy. Even if it is, I still have a lot to work on.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Closeup side picture of the writer's face. Her cheek has a swirly red tone with slightly peeling skin and a few redder bumps.A tube labeled "Hydrocortisone Cream: Fast Itch And Rash Relief."
My face decided to feel all sunburn-y again. It felt tight and raw ever since this morning but got much worse after I took a shower. At that point, any contact or movement of my facial muscles caused that burning and stinging sensation, and my cheeks felt very dry and almost spongy. At least it’s not covering my whole face this time; it seems to be centered around my cheeks. Some hive-like bumps, at least one that contained pus, also appeared as soon I was out of the shower. It’s amazing how your skin can change its appearance and even its shape so fast.

Anyway, it was relieving when we found another tube of the hydrocortisone cream that helped the last time this happened, especially since nothing else we tried helped (and some possibly made it worse). I was a little unsure about trying it this time because 1. it was made by a different brand and may have different side ingredients, and 2. it made my face burn a lot at first. Five to ten minutes later? I could move my face, touch my skin–even pull on it–and it barely felt painful or raw. This cream also moisturizes better than any moisturizer… at least for me. It’s still red and bumpy for some reason, but I’m so glad that I have something to make my face feel better.

So, yeah, something to consider trying if you ever have problems with red raw/burning/stinging skin. It’s meant for itchiness in general, so you might find it helpful for that, too (though it seems to only help me with the sunburn-like feeling.)

Originally posted on Tumblr.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Well, the IV is done and definitely took hours longer than expected. I only got one liter of fluids but still somehow feel like a giant pulsing thumb… mostly in my head. I normally get this to some extent when I get IVs. I just don’t know if it’s happened to this extreme before. It’s really annoying and honestly feels like my eyeballs will pop out, and skin is filled with water balloons waiting to break. Maybe the doctor I’ll be seeing today will know something about it. (I’m curious at the very least.)

Originally posted on Tumblr. 
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I seem to have done a lot today because I didn't get home until 7PM (a wild guess) or so. I think I also had to wake up early--or at least early for me--to go to some appointment, but I can't remember much about the appointment, and it feels like it could've been at least months ago. All I know is that I saw this doctor for the first time in years (not sure how many exactly). After that and some other things that I can't remember took place, I got my "usuals" at Starbucks and Noodles & Company and went home. My arrival was soon welcomed by even more pain, nausea, a headache, and weakness. My stomach basically started acting like I got food poisoning. I was hoping to drink a lot of fluids (not that I would retain them anyway) and get in a decent amount of calories today, but you know what? Never mind. I could barely get myself to drink enough water to get my gastrocrom and most important meds down. Somehow I did that and made it to bed.

This also means that I'll most likely feel pretty bad tomorrow. Ideally, I would stay home and rest tomorrow, but I was just told that I have other things to do. Earlier in the day (too early for me), I'll be getting up to get IV saline, which will probably take 2-3 hours. Then I'll have to see my endocrinologist later in the day. I honestly have no clue how I'm going to do that... even though I won't be doing any of the driving or anything. It doesn't help that I can't stop myself from needing to shower right before leaving the house.

Blah, just ate some nuts because my stomach was feeling a little better. Instant regret.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
It has been and is going to be a pretty uneventful day. That doesn't stop me from being exhausted!

My partner helped me research devices for tracking pulse, steps, sleep, body temp, etc., and he found one that sounds great for the price! I'm hoping to try it out soon. Because of my POTS, narcolepsy, and possible sleep apnea (it's complicated), being able to find patterns in pulse and sleep sounds really helpful. I'm also trying to work on having a more consistent amount of steps/exercise throughout the day. Spending most days not moving much and having the occasional day where I move 5 or 10 times more is probably contributing to my crashes. If I could accurate track my activity, I can find patterns in what makes me feel better/worse. For now, I downloaded an app that's supposed to use your mic to track your sleep, and it seems to think that I've been going from being awake to being in deep sleep constantly throughout the night. If it's accurate, maybe that's one reason I'm so tired today.

I also started my cycle, which is making IC and probably dehydration worse. Luckily, I should be able to get fluids again soon. I'm currently getting one liter a week until I can find a doctor to set my PICC line up. It might be helping a tiny bit. It's really hard to tell.

I'm also supposed to do more physical therapy today. I adjusted my schedule so I only did my exercises 3 times a week because my muscles have been taking much more time to recover. At this point, after doing a really easy exercise, my muscles can feel extra sore for over a week. It's hard to tell if I should be exercising during that time because they say often say to rest and let your muscles rebuild themselves when you're sore. I should probably bring this up to my physical therapist. I think I'll try to do the exercises today.

What do I do on a typical Monday? Nothing out of the ordinary. Usually, I either have a doctor appointment or am staying at home recovering from something I've done on Sunday.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Today's been better. Still getting that constant vertigo and weird bladder issues, but I've been able to manage. (To be honest, it got to the point where I lightly peed my pants yesterday without warning. It was during a time when the constantly-needing-to-pee feeling was finally leaving me alone for once. That feeling doesn't seem to trustworthy anymore, but I know my body's trying its best.) It's been the most productive day I've had in a while, even though I spent most of the time zoning out. Now that I think of it, I can't really remember what I've done today. I just know that I've checked a lot of items off my to-do list. I'm good with that.

It's only about 11:30PM (which isn't that late to me), and I'm ready to lie down in bed and instantly fall asleep. I've spent much of the past few hours eating and spending time with my family. (Maybe that's why I'm so exhausted.) We didn't have much of a variety, but the food was all really good--at least to me. It's been a while since I've had that much real food. We also picked up some gluten-free bready things from a nearby (meaning an hour away) bakery. I really wish my stomach could hold more of that stuff.

Compared to yesterday and the days before, everything feels a lot clearer, and I think I'm less depressed. At least I could say I'm much more motivated than before. I mean, there's no way I would've been able to get any of this stuff done during the last however many days. Maybe I'll continue to feel this way tomorrow.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Here we go again. I’ll try to make this one shorter.

This is probably something I’ve talked (and possibly complained) about before. Ever since--or a few days to a week after--I started the SIBO antibiotics, my face broke out worse than it has before. It started on my forehead and spread downward to the space on/around my nose. My compulsions and uncontrollable drive to constantly “tend to” my skin (not going to go into what that consisted of) only made things worse. I guess it works as a representation of how your body and mind can work together to hurt you.

My mom seemed to think that it was from my autoimmune urticaria, but I wasn’t so sure. I suspected a yeast infection for a while because it seemed like something that could be caused by the antibiotics.
Read more... )
Today, I thought I’d Google the description of some of the skin changes... not thinking I would find anything important. I quickly came across several articles about a protein called keratin that can continuously clog pores. It’s produced by a part of the immune system called keratinocytes, also known as basal cells (!). Basal cells, along with mast cells, can be “activated” by autoimmune urticaria (based on one source that I can’t seem to find anymore.. ugh). Keratin is created as a wall between the internal and external environment: It keeps needed things like fluids in while trying to keep anything the body finds threatening out. So maybe my mom was right about this...but don’t take any of this too seriously because I can’t find where I’ve read much of this information anymore, and my memory isn’t that trustworthy.

There’s a lot that I’ve already forgotten, but at least I have some possibilities written somewhere.

Originally posted on Tumblr. 

The Spider

Nov. 15th, 2016 08:31 pm
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
As I may have said before, I’ve been getting a lot of quick hypnagogic hallucinations in the middle of the night. They started happening after I heard someone talking about how there are commonly spiders in people’s beds. I’ve never been that scared of spiders (actually, I loved them when I was little), but soon after that, I started waking up in the middle of the night to seeing and occasionally feeling a spider on me or in my bed. Luckily, there’s a futon in my room at the moment, so I’d just go back to sleep on that.

Eventually I got to the point where I could tell myself that it probably wasn’t real soon after it occurred. I’m sure it’s messing with my sleep, but I can’t help but laugh at it for some reason. I find me waking up and freaking out about “seeing” a spider in my bed over and over again very amusing.

Anyway, last night things escalated to a whole new level. Usually I’d wake up to a spider that instantly ran under the covers and vanished from sight. That made it easier to tell myself that it wasn’t real. Last night, the same thing happened, but the tickling feeling of a spider crawling on me was much more obvious (though I’m pretty sure I felt it on both sides of my body far away from where he spider hid, which stopped making sense after I snapped out of it). Then a spider web was floating, getting closer and closer to my face. At the time, I was awake enough to tell myself that it wasn’t real. It just hovered over my face for so long and eventually started tickling it. At that point, I got up and switched to the futon to get as far away from it as possible. It might’ve disappeared when I looked back at my bed. It’s hard to remember.

The next day, when I wasn’t stuck with that in-dream reasoning, I realized that it was pretty much impossible that a spider web could float and hover in that way. Another reason to laugh at it.

I just wonder why it’s always spider-related. Pretty sure I don’t think about spiders much–at least not consciously. I don’t think my normal dreams are about them either. It’s interesting.

Originally posted
on Tumblr. 

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Ashley

June 2017

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