Saturday, May 11, 2019

Around

I'm still here.

Let's see, what's happening.

I've continued to get botox. After the initial 3 rounds, my neuro asked if i was seeing 50% relief. I laughed and said no way, maybe 10%? He was disappointed by that and suggested we quit the botox and try something else. I thought about it for a few days and decided to ask to continue it. I may be only seeing 10% improvement but that's 10% more than I've seen from anything else other than cannabis, and that breakthrough was 12 years ago. I'm having less scalp allodynia in specifically the spots he's been injecting, so I've also asked him to focus on my remaining hot spots for the next round. I've had no negative side effects beyond fatigue and flu-like symptoms the next day.

I've got school for another month or so, I'm taking a film class and I love it.

I have been neglectful in my exercise posts, but this is about how it's gone for the last 6-9 months. So much fatigue, and not much hiking.


I've been having pain in my toes and hands, got an xray on my thumbs but nothing showed up.

I'm constipated a lot, and I'm pretty sure it's from eating flour, in any form. My diet is already so restricted, I'm having trouble accepting this.

I continue to attempt to garden. There are just so many critters up here I don't know if I'll even try a veggie garden this summer, but certain herbs are doing well, and I'm slowly filling up my kitchen with succulents and houseplants I keep propagating.

And, my head. My head remains what it is: an albatross, a constant reminder of human limitations, and my biggest obstacle and enemy. Nothing's really changed, as the same symptoms wax and wane with predictable unpredictability. The botox has changed some sensations though, so there's always hope. Right? Right.




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Monday, January 14, 2019

School Stress

Look at how things can change in a week.

1/8: this shakespeare class is so intimidating. reading just the intro to the text was impossible for me yesterday, so now i'm questioning everything. i've got a week before the first assignment is due, and a few weeks to drop the course if i'm doing that poorly. even if it doesn't work out, it'll work out, i have options. but i used to be able to push through anything. i could think my way through the most confusing info, sometimes it took lengthy rumination but things always made sense in the end. not so much now. i have to work 10 times harder to do a tenth of what i used to manage and it is infuriating.

1/11: well my brain continues to refuse to think well enough for this class to be anything but miserable, so i'm trying to drop it. well, dropping it isn't the problem, it's that I don't have a backup class lined up. so I've got add requests in and emails out to profs and all my fingers and toes crossed. If anyone lets me in, this will be my THIRD attempt at a class this quarter. The first one was cancelled for lack of enrollment, so that one's not on me at least.

1/14: I got into a media class! I'm already caught up and so happy! This class will be much less stress and I'm looking forward to embracing my future with the visual arts. I'm switching my humanities major from a literature focus to film. My brain has let me know its limitations, so I'm respecting them and adapting.


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Wednesday, December 19, 2018

Amongst Other Things

It has been a rough few months.

My first class back in college went well, the next quarter starts next month and i'm so happy to be back in the swing of things.

My head has me so tired all the time. or maybe it's chronic fatigue, i'm still short a blood test to confirm or deny that diagnosis.

Xmas is almost here and my anxiety is in the full holiday spirit.

I've got a shrink coming today to talk about it, amongst other things.

My exercise record is shit lately, only 25 out of 90 days, but accountability is good and hopefully in a few months i'll come back here and say wow i've bounced back incredibly! Hope is good.



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Tuesday, October 23, 2018

A Day in the Life

It was uneventful, but i blogged a migraine day on twitter.








I unrolled the thread as well, click here for accessibility

UPDATE: someone replied to the thread asking if i'd tried massage. lol oh people.




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Monday, September 17, 2018

Face-squinching

I meant to update here a few weeks ago, if nothing else than to maintain my lovely exercise recording streak, but i have failed. FAILED.

So we're missing a few weeks from the record. There was nothing phenomenal in there anyway. This summer has been a struggle physically.


I've been using the elliptical machine when i can't deal with the hills or the weather, but I still only managed 37 days out of 90. That's the lowest I've recorded since I started recording, and that makes me sad, but everything waxes and wanes, so I'm not going to dwell on it.

I'm starting school back up in ONE WEEK! I'm so excited and nervous, I'm having anxiety dreams every night but that might also be because I've got a big family gathering coming up that spans an entire weekend. I'm super apprehensive about that too, but I know I'll be surrounded by people who care about me and I will also have my own room, earplugs, and the freedom to medicate myself as needed, so I'm aiming for optimism.

The anxiety is a pretty normal thing lately, like I've been dealing with it my whole life but never like this. I've been really proactive about naming it when I feel it, which gives me a little control and lets people around me help me if they can. My depression on the other hand, is 99% better. I have rare bad days, but mostly I am feeling back to my earnest, overdoing-it self.

Symptoms-wise, The nausea's been less, but still flares up with an increase of triggers, or car rides. I've been dealing with allodynia more. My scalp has been super tender with bruise-like spots, and yesterday I realized my face hurt. It often aches with the rest of my head, but I tried using a thc:cbd roll-on (topical cannabis) and it HURT to roll the thing over my cheek and eyebrow - intolerable, holding your breath, face-squinching pain. So that was new. Putting it on with my fingers was less painful, I think because the roller was cold. The topical did help, though!

On that topical: since cannabis was legalized in CA for medical use, the products that have come out are amazing! But now that it's legal for recreational use there have been arbitrary limits put on thc content that have made getting the good stuff impossible. I get that people are using it to get intoxicated too, but they have alcohol and all kinds of other drugs to turn to if you take away the harder cannabis products, so it's just making it harder for patients to medicate properly.

My head is the same, despite having a round of botox last month. Of course, it takes several months to take effect, and I did feel somewhat of a difference in the nature of my head pain but not its consistency or effect on my ability to person. It's been less throbby, more stabby. I've had perhaps more stamina but the repercussions of activity remain the same.

Another possibility for the stamina increase is supplements I was recommended for what the infectious disease doc thinks is chronic fatigue. I'm supposed to actually get tested and I haven't because I never leave the house, but in the mean time I've started turmeric with black pepper extract 500 mg/day. I also took ubiquinol at 100mg/day for a few weeks but I think it was disturbing my sleep. It was expensive so I'm going to try it again at some point.

And that's what's up with me I guess. :)

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Tuesday, June 5, 2018

The Latest

It's been a difficult few months and it shows in my exercise log.

Only 43 out of 90 days, and most of those were in the last few weeks. I've had some familial upheaval and the stress wore me out. The stress is still happening but I've been able to take a bit of a break from it and with any luck it'll be resolved soon.


I got an elliptical machine! I managed to tuck it in my kitchen, which has huge windows that overlook the forest, so that's been great for when I can't handle the hills, the heat, the mosquitoes, etc. Anything that keeps me moving is worth its weight in gold.

I just discovered a program that allows me to go to school completely free, at least until I get my AA. It's online, I can take one class at a time! It seems too good to be true, but it's through my mom's union and it all looks legit! I'm so excited! But getting all the relevant paperworks to them is such a pain. I gotta get with my high school, my old college, my doctor, but it's like a warm-up for academia so I'm trying to take it in stride.

I've got a garden going again this year, but it's small. A few herbs, squash plants for the flowers, and some begonias and marigolds the critters have already had a munch on, but that's why I always buy the cheap plants, because I live in the forest and hongry herbivores abound. I've also started collecting succulents, so that's new.

My mental health has improved MAJORLY you guys. Zoloft has been amazing for me, and I was so skeptical because I'd had a previous bad experience with antidepressants, but I'm really glad I got over my fear because I was stuck physically and mentally and it was awful. I'm still kind of stuck, there's not a whole lot of unsticking when you've got daily migraines, but at least I can see the light again. I've got my optimism back, and it makes a world of difference.

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Saturday, March 10, 2018

Vag of Steel

I started pelvic floor therapy.

I've been having increasing trouble peeing, and from the interstitial cystitis groups i'm in i'd gleaned it was an issue with my pelvic floor. So I asked my gyno and she referred me to a therapist.

Within 10 minutes of meeting her she had her hand in my vagina. I'd expected a thorough internal massage so I was gung-ho, anything to not end up in diapers or needing to self-cath any earlier than I have to. I have the strongest vagina she's ever seen.

She directed me to practice diaphragmatic breathing and at our last appointment I was shown some massage techniques and it's already made a difference. It's invasive and weird for me, but the therapists are caring and professional so it's easy to get past my own hang ups.

It's time for my exercise chart update,


55/90 days - i think, my eyes are crossing trying to count. More than half, but it's frustrating how often I want to work out (every day) and how often I can. When I can run I feel almost normal.

My head's been pretty consistent lately. I wake with minimal or no pain, with increases as i'm active or exposed to triggers throughout the day. The nausea's died down for a while, so that's nice. Dizziness is frequent, memory lapses normal, fatigue constant. My neck and shoulders are frequent triggers. My doc thinks it's arthritis, as i'm starting to feel it in my hands too. Yay I'm collecting chronic illnesses like they're worth more in a set.


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Tuesday, January 9, 2018

Pillbugging

I made it through the holidays with the usual amount of joy and pain. I'm lucky to have a loving family, but the migraines didn't make anything easy.

This last year has been a year of self-protection and rebuilding. I'm trying to be better about recognizing where I'm self-defeating and one of those ways I'm working on is my tendency to pillbug.

I think I made this term up, at least I can't recall hearing it used like this before, and it came to me on one particularly migrainy morning when I just couldn't seem to get myself out of bed. Pillbugs, or potato bugs, are those small armored-looking insects that roll themselves into a tight ball as a defensive mechanism. And that's what I was doing that morning, tucked snug in a shell of my own making, hidden and still, waiting for the danger to pass. I should have gotten some water, medicated, stretched, listened to a little music; I was feeling bad but a little self care would likely make me feel better. Instead, I lay under the blankets, curled up and letting my mind drift away from the pain and nausea. I lay for nearly an hour before I came back to myself. Once I wrested my achy body from my cozy bubble, got up and did a few of the things I knew would help, I loosened up a little and could begin my very quiet day.

Now that I have a name for my pillbugging tendencies, I seem to be recognizing it earlier and doing it less! So that's good.



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Sunday, December 10, 2017

Listen to The Head Stabbings

Cardio updates bring me here at least once every three months and every time I'm like... already? I miss when I used to write here every day, wish I still had that mental focus, but I have a physical strength now that I never imagined I'd have again then, so let's pretend it's a trade-off.

Per the chart, my frequency and endurance have both decreased.


I managed to get out 40 days out of 90, but I'm struggling to make it any more than twenty minutes. I upped my antidepressants a week or so ago, I'm hoping that will help me get moving more regularly. What stops me frequently is head pain, but also body aches and exhaustion. The former is good to listen to, head stabbings don't respond well to cardio in my experience, but the aches and the fatigue can be helped by exercise, if I can get over the initial hump.

I can do 30 half-pushups, not sure if I've recorded that yet here. I'm not trying to increase them to full pushups, it's just too much strain on my head, but I do push it to 40 when I can.

The weather's been cooler, which is so great for cardio. It takes much longer for me to get hot, which means I have more freedom and can go for longer. Though, I think the changing weather has been hard on me in other ways, so I don't know how much I'm really getting out of the cooler temperatures in the end.

One step, one day, one breath, one migraine at a time. :)


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Monday, November 6, 2017

Distraction is a Coping Skill

Hey all. I don't have much going on lately. I'm still really focused on exercise, which takes up the majority of my energy.

One new thing is I've started wearing earrings again. It's been years since I could tolerate them - I guess that's part of allodynia? - between the pokey backs and how irritated my ears get from anything not stainless steel, I'd always take them out within minutes. But having short hair always makes me want to femme things up, so I decided to try something new. I found some thin, short, stainless steel barbells and they are perfect! No irritation, they just look like simple studs, and the backs are totally no-poke. I've been wearing them for weeks and couldn't be happier with them.

My uterus has been given the all-clear for a year! I had to go in and have another hysteroscopy, which was fine but the anesthesia always makes me SO SICK. But it was only a two hour vomiting extravaganza this time, instead of my usual six, so hey improvement! And my ute being hunky dory is pretty much all I was hoping for, so thank you cancer cells for not coming back. Appreciate it!

I'm having a neck spasm right now and it's no fun. I finally went and got xrayed, they say it's just arthritis. It's not great for my migraines, is all I care about right now. I just can't move. So I'm using my dusty bottle of muscle relaxers and ibuprofen, also stool softeners cause I would like to poop again within the next week, liberal cannabis, and loads of tv to keep me distracted. Stranger Things was great, also enjoyed Halt and Catch Fire. I'm trying to get into Penny Dreadful but it might be too gory for me. I will take any recs you got, distract me migraine fam!

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