cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
2017-06-14 12:15 pm

Some Scattered Updates

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)
2017-05-28 12:49 pm

Just a Few More Cycles...

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)
2017-05-19 03:47 pm

Big Step Taken, So Many More to Take

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)
2017-04-13 06:51 pm

Too Much Sleep

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)
2017-04-08 08:19 pm

Vyvanse Dose Change

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)
2017-04-07 07:27 pm

First Entry in a While

Not sure why I'm attempting to post something now considering the fact that my mind is so blank. Just got back from a long appointment. Actually, the appointment wasn't that long itself, but the trip plus chaos and drama in the car took up time and energy. I feel so empty right now but am scared of trying to fill that empty spot... just so it doesn't feel like I keep losing everything again... if that makes any sense. 

On the bright side, just being able to type out words and hear the clicking of my keyboard seems to be grounding me. I think I feel like I have more freedom, too. 

I hate being reminded of all the time and resources I take up by existing. Being sick... being an incompetent person who doesn't do anything... the fact that my family already has enough trouble with conditions that doctors/researchers don't know much about... me being really hard to deal with in general... I don't know. And, because of a lot of this, I'm the reason someone wants to die.

I'm starting to numb everything out more, but I hate what feeling nothing... feels like. The more time I spend feeling nothing, the worse this restless emptiness feeling gets. (So I can't say I'm really "feeling nothing" after a certain period of time.)

Anyway, the reason I had the cardiologist appointment today was because I needed him to sign off that, from his perspective, I was ready for surgery. (Can't remember if I've talked about this here yet, but some doctor finally ran the right tests and found something that was "significantly" wrong with my cervical spine. C1 and C2 are slipping off of eachother way too much, and there seems to be some deformities in that area as well. Plus there's wayyy too much space in between them. Like C1 was 2x or 3x further above C2 than it should be. (Will my neck be noticeably shorter after surgery???) And because I have a mild Chiari malformation issue and spinal fluid blockage (or however you say it), he'll be removing a bone behind my neck as well. 

Also, some important veins can be temporarily closed off by my neck subluxing, so that could explain the vision loss and floaters I get when putting my head in certain positions, especially when my POTS is acting up.

To keep going with this updating thing, I also got a PICC line inserted at some point (for IV saline five days a week). With all my ups and downs, it's hard to tell how much it's helped, but one thing we know for sure is that I gained 6 pounds since starting the treatment. I'm still underweight, but holy shit, I don't think I've ever weighed this much. Since some point before the fluids, my BMI (yes, I know that system isn't perfect, but it's a way to show the changes) has gone from low 16 to high 17. So I'm almost up to a "normal" weight, though I seem to have smaller bones that anyone else I' remember meeting, so I could be closer to a "normal" weight than I thought. Fuck you, dehydration!!

Typing all that was distracting. I should probably get something to eat. Back to the weight thing, I haven't even been eating that much lately due to mental health reasons. I wonder if I could get up to 110--I mean I only have 6-7 (depending) pounds to go. But. yeah. food. I'll probably put that off for a little longer, and then we'll see.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
2017-02-10 10:08 pm

PICC Line Problems

Okay, things have changed a lot since yesterday. (I think it was yesterday at least???) I got the PICC line inserted, which wasn’t that bad. During and after the insertion, I started getting heart palpitations and ignored it for a while. At a certain point, I thought I’d look it up to see what might be going on, and it turns out it’s a common sign of the PICC line being inserted a little too far in.

Today I’ve been getting a lot less palpitations but much more pain in my arm, back, and chest when moving my body (mostly my torso). Someone from Home Health Care came to show us how to connect the saline + dextrose pack. The nurse said something about checking to make sure I don’t have a blood clot or something soon. (???)

I literally spent over five hours on a liter of fluids and still had to stop early because my arm was turning dark purple, and my veins hurt like heck. In person, my doctor suggested letting it slowly drip overnight while, in her instructions, she said to let it drip for 3-4 (or 4-5) hours. So that’s what the nurse told us to do. Either this is something I’ll need to get used to (five whole days a week), they need to fix/change something (like time spent), or this isn’t going to work.

It’s still hard to move my fingers (aka type) with this hand, it’s still turning purple unless I constantly point it upward, and now the area where the PICC is inserted is even more prickly/itchy.

I’m going to have a hard time not ripping this thing out.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
2017-02-08 01:55 pm

PICC Line Insertion... Tomorrow???

On another note, it looks like I’ll be getting the PICC line inserted tomorrow???! I don’t think I’m grasping this because I feel pretty indifferent about it, but I wouldn’t be surprised if that’s what kept me up last night.

That also means home health care will be coming over--into our messy trashy house--the day after to help us take care of it/set things up. Them coming over honestly isn’t the biggest deal to me right now. I’m more worried about showering (which is enough work already) and sleeping while getting the fluid drip. My geneticist instructed that I do a slow “gravity drip” 4 or so days a week so I could wake up more hydrated. Problem: My arm might have to be held in a certain position, and I don’t know how I’m going to handle that as someone who rolls around a lot in bed, sleeps in weird positions, and constantly deals with “jumpy legs.”

I guess I’ll just continue what I’ve been doing for the longest time and “see how it goes.”
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
2017-02-08 01:45 pm

Comforting Dermatologist Appointment

I saw my dermatologist yesterday who, like the allergist, suggested that much of what was going on with my face was rosacea... except the dermatologist said he’s seen it be an issue for his mast cell patients.

Anyway, this doctor is really nice, talkative, enthusiastic about everything, and loves his job (or is really good at faking it). He told us about research he found suggesting that low-dose doxycycline has been beneficial to people with mast cell disorders and other immune issues. (Plus it’s known to help with the rosacea.) But yeah, since it’d be at a really low dose and is pretty harmless compared to other meds (at least from what he knows), I’ll be starting that really soon. I’ll also be continuing on the autoimmune drug (can’t remember the name) until things start to settle down.

During that appointment, I also learned that the skin takes in outside materials (idk I’m bad at words) similarly to digestive organs. I would say more but can’t remember much else, but whatever he said was interesting.

He also gave his opinions on the PICC line, surgery, Xolair, etc., and now I feel a little better about the current decisions. (PICC line, then surgery, then Xolair). Still wish I could research this stuff without getting overwhelmed, though. (Actually, the last few times I’ve researched things, I’ve felt surprisingly ok and in control. I think starting the task is the worst part.)
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
2016-12-21 05:32 pm

Cromolyn + Nosebleeds

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)
2016-12-16 01:03 pm

More Messing with Meds

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)
2016-12-16 11:19 am

Effects (?) of Prozac and Lithium

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)
2016-12-15 12:25 am

Creepy Eye Experiment

I am EXHAUSTED (yes, I probably say this a lot). I've had an appointment every day for I don't know how long, and I've had to wake up and get ready earlier than usual for many of them. Because of the near-D.C. traffic and how far away many of the appointments are, I end up spending a lot of time traveling and have been finding it difficult to get food in. Plus exhaustion often leads to things like nausea for me, so that makes eating even harder.

Time to finish typing this hours later at home. I slept for a few hours (or at least an hour I think) after getting home, and that seemed to help a lot. Tomorrow, I’ll be getting more blood drawn. Maybe I’ll get a break after that.

But let’s talk about today’s appointment. Compared to my other appointments, I don’t think this one will be easy to forget. I saw an eye doctor to get the remaining pre-Plaquenil tests done and definitely didn’t expect them to stick some sort of contact lense connected to a wire in my eye. THERE ARE A WIRE COMING OUT OF MY EYE, AND MY EYE DID NOT LIKE IT. I had to skip the eye-numbing drops because they contained some common mast cell triggers, so it ended up being pretty painful, and my eye kept pushing the thing out without my permission. They ended up having to tape it to my face.

Anyway, I was able to get a picture before beginning the test. I’ll put it under the cut because it might be... disturbing to some?? That would make sense at least.

See image... )

Originally posted
on Tumblr.

cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
2016-12-08 09:48 am

Medication Trials

Well, looks like my body is needing less sleep now... or at least thinking that it does. I only got about 4-5 hours of sleep, and though I have no problem fading in and out of very light sleep, I can't seem to go into deep sleep anymore. And I feel more awake than I usually do at other times of the day.

So here I am. I've been up since 8 or so, and that's early for me. This sort of thing has been happening more and more lately and might be correlating with the increased dose of Prozac. Oh well. I'm not any more tired during the day, and I might be seeing improvements with my mood, so that's fine with me.

Speaking of medications, I'll be seeing an allergist today to talk about Xolair, and I saw my psychiatric nurse yesterday. I can't remember much about the appointment, but she prescribed a low-dose mood stabilizer that could be helpful for a huge variety of things. I'm also supposed to try logging how full my stomach is along with effectiveness of Xanax to see the dissolving kind might be appropriate. For the same reason, she also wants me to try *shiver* leaving the tablet under my tongue to dissolve. Apparently the dissolving kind is more expensive, and insurance companies often deny paying for it unless you've tried the scary task of dissolving regular Xanax in your mouth first. My prescriber said that, of course, she could lie to them, but there wasn't much of a point if it isn't going to work any better in the first place.