Intersection

It's cold and rainy here. Not overly cold, but chilly enough for a spring day at the end of May. I keep returning to my spot on the sofa. I go do something. Then I come back. I thought that perhaps the rainy weather was responsible for my case of the doldrums and ho-hums. I even thought that maybe I needed to up my dose of 5 HTP again. I thought maybe this sense of I-need-a-nap was my depression rearing up.
Then I remembered: It's Benlysta week. That's why folding laundry was exhausting. That's why taking a shower was oppressive rather than invigorating. That's why my head is heavy and my yawns are many. I really just want to go sleep for a while. It's my body telling me the lupus fatigue is going to kick my ass until Wednesday. Goody.
So that'll be just in time for the higher dose of lamictal. That means I'll feel really good on the energy front just in time for the nightmares that interrupt my sleep. My doctor upped the dose of my lamictal because of small fiber neuropathy pain. Every upped dose has given me nightmares. Not just nightmares mind you, but night terrors when you wake up in a sweat, your heart is pounding, and you can't go back to sleep. Or those sleep paralysis incidents where you're in twilight. You are aware you're not really asleep, but you're not altogether awake either. The best part is of course the foreboding and the dark presence in the room. Can't wait for that. And interrupting sleep patterns makes lupus and migraine symptoms more likely. Regular sleep is stupid important for just about everything in life.
But it's also Ajovy week. As of today, I've only had 7 attack days since last shot day. This is good. Of course, the weather and the lack of sleep could open the door to more headaches. So might the 5 HTP appetite suppression. I am pretty sure that the migraine on Friday was because I hadn't been eating as much as usual. I was eating more out of knowing I needed to rather than any real interest or appetite. Apparently I was not vigilant enough. Must do better.
I started 5 HTP few weeks ago because the St. John's Wort was causing the same trouble that every other anti-depressant has: no libido and no orgasm. Of course, no libido is part of depression, so...yeah. Switched and I am much more pleased with the 5 HTP. Except for the needing to force myself to remember to eat so I don't get migraines.
It's really odd to think about how interconnected every ailment and treatment is. You find something to remedy one malady and it makes another malady worse. Solve one, make another more unpleasant. It would be grand if you could engineer a treatment that solves all your conditions without causing any kind of trouble. But where's the fun in that?
For now, I will curl up on the sofa in my robe and blankies with the three kitties around me. I have my colored pencils and color-in post cards to do while Netflix runs. I think I can manage that. I might even manage a cup of tea.

No Big Deal

My seniors are wrapping up their final research project. It's supposed to be about a controversial topic that they care about deeply. The perspective up the up and coming young adults who will be graduating in just a few short days is astounding.

Some students chose topics that are not terribly pressing or impacting on a large scale. There's the video game causes violence one, or the regulation of vaping products and minors that seem fairly mundane and in some aspects already settled. I even had one that was about whether Netflix original films/shows should be eligible for Oscars and Emmy's. That one was a bit refreshing actually. Totally new topic there.

A few surprises came up like whether street racing should be legalized. Ummm, no. Thankfully, this student reached the same conclusion. Another student wrote about cockfighting. No, really. I had never considered the idea that there could be a valid reason for cockfighting, but apparently there is. A small contingent of farmers and ranchers who are losing their family businesses are turning to cockfighting as a way to make money. The things you learn.

What I found deeply concerning though are the apathetic ones. One young lady wrote about abortion and defunding Planned Parenthood. In light of recent state laws being passed by largely male, white, and Christian representatives, I thought there might be some real thoughtful ideas even if they didn't agree with my own. Nope. Her conclusion was that people are making an unnecessarily big deal out of defunding PP. She decided after looking at the evidence that not using taxpayer money for PP would really be no big deal.

Another one that came across my desk was about the access to prescription medications and the pharmaceutical companies who set outrageous rates for them. I figured since a member of her family is a diabetic, that she'd likely conclude that Big Pharma sucks ass and needed some thrashing from agencies to ensure that people get the medication at reasonable costs so they don't die. Nope. She too concluded that the debate and argument over prescription drug costs was overblown and no big deal.

Yet another paper drew the same conclusion. This time it was about whether or not Trump should release his tax returns. Given the wealth of information out there on this topic and the back and forth about the Mueller Report and New York's lawsuit I knew that this paper would surely have some meat to it. Seniors are entering the larger world and will be eligible to vote in the next election after all. I had longed for some critical thought about the shady dealings and flagrant thumbing of nose at precedence and transparency, or at least what the opposition sees as the argument against. Alas! It all boiled down to the notion that his taxes are private and no one needs to see them because it was no big deal.

I was astonished by the apathy to be honest. As I read these conclusions about topics that I care deeply about and write to my representatives about I was dismayed by the lack of awareness for future implications. We adults are just fools with nothing better to do than make mountains out of molehills. I'd pause to try and remember what I saw as important and relevant when I was 18 and poised to start college in the fall. I know that I cast my vote for Bill Clinton largely because he was the Democratic candidate and the Dems represented what I saw as important social topics like public education and equal rights. I tried to recall the issues that took up headlines in the early 1990's and what my views were. Was I as indifferent as to call the Iraq War no big deal? I don't think I was. I hope I wasn't. 

The lukewarm opinions and dispassionate views just made me cringe. Moreover, they made me feel a bit more nervous about the direction of the country right now. With the numerous issues being bandied about that could destroy the very fabric of We the People, I feel trepidation and fear for the upcoming elections. The disinterest makes me worry that the country will continue down a path toward tyranny and oppression. If these aren't big deal issues for them, then what are?  But I suppose I'm just overreacting. After all, it's no big deal.

Gingersnaps

My aunt passed away during the night. We weren't blood-related, but we had a few things in common. Like lupus and migraines for example. I wasn't aware she had lupus until after I was diagnosed. I never remember seeing signs of it anyway, but as a kid I likely wasn't all that inclined to be on the look out for such. Despite having these two things in common, one big thing we did not share: how we managed them.

She was a two pack a day smoker when I was younger. I know she had slowed her smoking as she got older and her kids tried to get her to quit a lot over the years, but even with the oxygen tank, she still made way for a cigarette now and then. I never smoked nearly as much as she did, but I did smoke until about 12 years ago. Then I stopped. I am glad I did for a number of reasons. It's just plain good for your overall health not to smoke, but it's one of those things that always comes up on the thing to avoid lists when you have a chronic illness. She never stopped though.

I never recall seeing her cover up much in the sun either. I know she'd put on sunscreen and big sunglasses, but she liked the sun as far as I can remember. If I saw her in the shade with others, it was because of the heat more than the sunlight, or so I thought. Maybe I just don't have accurate memories, but I don't remember her ever going out of her way to cover up with long-sleeves or big hats. I don't remember ever seeing her with lesions or rashes either. Of course, I may just not have been around for those flares. Maybe she was just really good with make-up.

She didn't seem too inclined to change her diet either. She ate your average diet honestly. It didn't seem to faze her at all come meal time. Wine, bread, potatoes, sugary things, salty things, or coffee. Always coffee with cream and sugar. If she avoided alfalfa or nightshades or chocolate, I don't recall. There were tomatoes and peppers on trays and salads at family get togethers, so  maybe she just didn't like eggplant or alfalfa. I get that. I'm not a huge fan of those either. When I learned those can trigger flares, I was not all that put-out about it. I wouldn't likely eat them anyway. 

It needs to be said that she was diagnosed when very little was known about lupus. There weren't a lot of treatment options and when it came to migraines, well. It was a lot of female hysteria. There wasn't an internet either, so no Dr. Google or PubMed to help her navigate her diagnosis. Perhaps these accounted for the differences in what I recall witnessing and what I now understand about our shared conditions. Who knows? She wasn't exactly forthcoming when it came to her health.

What I do know is she lived to be in her 80's. She may have had an oxygen tank the last several years, but she lived her life the way she wanted and best knew how I'd wager. She raised four kids and I have lost track of how many grand kids. She kept a garden and a home. She lived. If she lived this life that made her happy and satisfied, why do anything different? Was she happy and satisfied?

My neurologist told me this week that my vertigo, lack of coordination, and perception weirdness are all part of my migraine. He said that it's not unusual to find a treatment that helps manage the pain, but not the other symptoms. When the pain is absent, then all those other symptoms are more noticeable. And there's not anything to be done. It's disheartening. I've spent so much time trying to control or manage or mitigate the stupidity of this body and it's led to this point. Not anything to be done and a shoulder shrug. That's what I get. That's likely what my aunt got, too.

What now? I don't really know. I'm not sure what my quality of life is going to look like from here on. I can keep doing the things I've been doing. Maybe they're doing some good. It doesn't really feel like it right now though. These neurological symptoms are scary. I don't know when they'll hit. I don't know how long they'll last. I don't know how intense they'll be when they do hit. I do know they'll strike at some point during my day, every day. That I can count on.

I haven't heard when my aunt's funeral will be. Some time this week I imagine. I made her gingersnap recipe today. I'm taking them to share with some friends this afternoon. It seems appropriate to remember her that way today. They're damn fine gingersnaps after all.

I Am Worth Defending

I am worth defending.
Go on. Say it out loud. Does it feel weird? Strange? Awkward?
Say it again. Louder.
And again.
Easier yet?
The first time I said it was last Saturday. It was how we closed a three hour self-defense class. I finally signed up for and took that self-defense class I've been trying to do for the last two years. Yeah me!
I was not expecting most of the three hours to be conversation. There was a fair amount of practicing different strategies to get out of uncomfortable situations like: Name it. Say it. Repeat it. Leave it. Essentially, if someone is standing to closely to you for example, you say, "You're standing really close to me. Step back." If they don't, you repeat the "step back". If they still don't,  then you say, "Since you didn't step back when I told you to, I'm going to..."
This made me think of that asshole in Seattle who didn't think he needed to move his jacket from where my friend was sitting. I don't know if you read that particular blog, but the guy was a total asshole who didn't think he needed to respect what a woman said to him. He even stared me down over it. Total asshole. This strategy would have some in handy. So would have telling him that: "Wow. I didn't realize you were an asshole. Ok, different tactic then".
He was such an asshole.
Anyway, we also did some punching into the bag. Practicing the heel of the hand, foot stomp, knee to groin, and backward elbow among others. That felt good, too. If I'd had the presence of mind to do the elbow blow to that asshole who assaulted me when I was belly dancing at the restaurant that one time, it would have been most excellent. He'd totally have deserved it.
At the end of the session though, we did the clap-clap-stomp (think "We Will Rock You") and after the stomp, we'd take turns saying, "I am worth defending." I honestly hadn't ever thought that let alone said it out loud. But I did with a bit more confidence than I probably would have at the start of the class.
As a final comment, the leader told us that it's not unusual after a self-defense class to have visceral, strong emotional reactions like intense crying, anger, or excitement. I figured that I might have some reaction, but since I hadn't actually been raped or abused by a family member etc. like some of the women she'd worked with, that I wouldn't have too much of an issue.
I was wrong.
I didn't make it out of the parking lot.
I was pondering the worth defending statement and said it again when I got in the car. Then the deluge commenced. I sobbed. Once the tears mostly subsided and I could drive, I started for home and proceeded to cry as I drove. I kept trying to hold it in and breathed very deeply in an effort not to lose it. When I got home, I sat down on the kitchen floor and bawled. My cats came to check on me. Little balls of comforting purrs they are.
Once the crying jag was over, I figured I had gotten it out of the way and was fine for the rest of the day.
I was wrong.
I couldn't sleep. I got totally jacked up excited and couldn't stop moving or thinking. Or drinking for that matter. Bear in mind this was the Saturday before Easter when the whole fam gathers for one of those celebratory meals. I was dancing and drinking seltzers and essentially cutting loose. I'm usually in bed by 11pm at the latest on the weekends.
Anyway, it was full moon weekend too, so of course I decided to go outside and light a candle and some incense and sit staring at the moon while repeating "I am worth defending" over and over and over. At 2am I did this. It felt like a good time for a full moon basking ritual. Easter is all about coming back to life right? It kind felt like that. Like some sort of coming back to life with a new understanding of myself.
I think I finally crashed somewhere around 3-330a. Then I woke at 530a and dozed off and on until I knew I just had to get up and get the Easter things done for the gathering since making pies was not going to happen after that workshop.
I didn't anticipate any of this when I decided to go to the YWCA for a class. But it happened. I'm glad it did. I have a new mantra that I repeat to myself when I am feeling doubt or insecurity: I am worth defending.
So are you.

That Conversation

I hate Asians.
This comment was recently stated in my presence. What the actual fuck, right? Who says this? Apparently a young man I have known for three and a half years does.
The comment completely caught me off-guard. I've never been confronted by such blatant racism before. It took everything in my power not to lose my shit on this person. Instead, I asked:
Why do you feel that way?
They scare me.
Why?
They're smarter than me.
I didn't say this next part. It occurred only in my head as I struggled to figure out the next step in our conversation.
Holy shit. You're kidding me right? Because you're insecure about your intelligence you are going to say something so outrageously racist? Asia is the largest continent. Not only is it the largest, it is the most densely populated continent, too. What the actual fuck? What do I say to this so that I am both an ally and a model for civil discourse when I really just want to scream, "Get out of my sight you racist motherfucker!"
This would have been the least appropriate response given the circumstances.
So I said:
Being afraid is ok. We're all afraid of something and they can be irrational at times. When we find ourselves feeling afraid, we have to ask ourselves why we feel that way. For example, if you came across Asians doing something you saw as intelligent in nature, you have to go through some cognitive behavior therapy. You have to ask yourself: Are they doing anything to frighten me? Are they doing anything to threaten me? If they are doing neither of those things, there is no reason to be afraid. The more you do this, the easier it will become to release that fear and hate.
He persisted and felt the need to be clear that he's all right with Asians. He can sit next to them and hang out with them. But they freak him out. He's got friends who are Asian. He can be around them, but they scare him.
Gah! He was using his friend as a prop to justify his racism. How can you be friends with someone when you hate their whole race? I really wanted to slap some sense into this person, but instead I said:
Do you realize that your fear is based on a stereotype? 
He stammered some other nonsense that made me want to slap my hand to my forehead and scream.
I don't know how many times I said the "fear is based on a stereotype" bit, but damn he kept at it with trying to explain himself. I was in shock as his explanations just kept digging him deeper into the racist hole he started for himself.
Do you realize that your comment and your view on Asians says more about you than it does about them?
I really have no idea what he spewed in response. It just became so much racist-laden bullshit that I couldn't process anymore of it.
It's been four days and I think I'm still in shock.I have no idea if he understands how racist that comment was. Is. The next time I see him, I have to somehow pretend that I don't see him differently. But I do. How can I not? He is an absolute and unapologetic racist. The fact that he felt emboldened enough to say such an appalling thing is just symptomatic of the state of this country right now. Hate groups feel at ease to walk and talk and throw their despicable vitriol around for anyone and everyone to see. Hate crimes are rising. Elected officials are being vilified because they are women of color.
It needs to stop. We need to do better. I hope we can.

Breaking Free

I was humming Friday night. It caught me off guard. I stopped for a minute and asked myself when the last time was that I was humming. I couldn't remember. But there I was getting dinner ready with my parents, and I was humming. I'd even had my first real migraine that morning since starting Ajovy, yet I was definitely humming contentedly.

It dawned on me: I feel good.

Seriously. For the first time in uncountable weeks. I. Felt. Good.

Holy crap!

I was smiling. I was laughing. I was talking and not feeling like it was all an act. I had to wonder if maybe it was just my postdrome or even another prodrome messing with me.

Until I woke up Saturday not feeling like total ass. I didn't drag myself out of bed. I didn't slog into the kitchen to make coffee. I actually felt like I didn't have to rely on the coffee to perk me up. I drank a cup of coffee because let's be honest: coffee is the nectar of the gods. Then I read through the headlines, did my squats, and did the dishes all before my husband got up. Well ok, I was finishing the dishes when he got up. Overall, I felt lighter somehow.

I looked outside to watch the beautiful coral sunrise, I played with the cats, and I was thinking about what I should do. I took a shower to contemplate this feeling of happy I had grown accustomed to living without.

Then I cried. I cried in the shower. Not the ugly cry of despair, but the crying of finally starting to feel like myself again. It'd been so long since I felt that optimism. It'd been so long since I wasn't sighing heavily. It'd been so long since I wanted to go out of the house and do things.

I wanted to go for a walk.

So we did. We walked around the neighborhood in the chilly Montana spring wind. We picked up garbage along the way to do our part to clean things up around here. I compared my walk to the walk from last weekend. Totally different.

I wasn't forcing myself to go for one. I wanted to go. I wanted to hear the birds. I wanted to see the spring emerging all around me. I wanted to spend time with my husband talking and just enjoying the unrestricted time together. It felt great. I was truly enjoying myself.

I even discovered that I wanted to have sex. That startled me. I haven't really been much interested in that at all. It's been a rather meh kind of thought in my world if it even became a thought in my head at all. But not yesterday. Yesterday I wanted to have sex with my husband.

So we did.

On Monday, I made a change. I had talked to my doctors. I had talked to a friend of mine who is a professional in functional medicine and nutrition and wellness. I knew I needed to do something about my depression, but I didn't want another prescription. I hate antidepressants. I have tried three and they have all been less than stellar. I really wanted something that would not deplete my libido even more. I wanted that back. Like, a lot.

Anyway, I had some St. John's Wort despite the fact that my rheumatologist and friend thought it wasn't the best option. My rheumatologist wanted me try another low dose antidepressant. Ick. I needed to do something because I didn't know when the 5 HTP was going to arrive. The possibility of increased headaches or light sensitivity didn't discourage me. I already take precautions in the sun and I know what to be cognizant of in that regard. As for headaches, those supposedly dissipate after 7-10 days of starting the supplement. The Ajovy had also been doing an outstanding job of managing those. I did consult with all my health professionals and decided to give SJW a go.

And I am so glad I did. My head is clearer. My libido is back. I don't feel so blech about everything. I even wanted to go to the grocery store. I laughed. I felt playful. I felt uplifted. I didn't expect such a dramatic change after just one week. Yet, here I am in a whole different head-space than last Sunday.

I hope the slight headaches diminish. I hope I don't get even more photosensitive. I hope the herb doesn't decrease the effectiveness of my blood pressure med, which I take for something other than blood pressure mind you. If any of these things go awry, I do have another option waiting. Now that I remember what it feels like not to have this dark cloud consuming me, I don't want to go back.

I broke free and I like it.

Existing

When I was younger, I loved Peanuts. Not the snack, the cartoon. Charlie Brown had a beagle and so did I. Snoopy made me laugh. There were posters with Snoopy about "Happiness is a warm puppy". Even now, if you Google Snoopy and the word happiness, you get a bunch of variations on that idea.

Sometimes I don't think I know how to be happy. I laugh sometimes. I enjoy moments. But I don't really recall what it feels like to be happy.

Right now, I just feel like crawling in bed and staying there. I don't want to be touched. I don't want to talk to anyone. I don't want to see anyone.

I kinda want a good cry. But I don't think the tears will come. Just more heavy sighs.

I came close to happy last night. "Brown-eyed Girl" by Van Morrison was on the radio. I love that song. It's uplifting in a way. I had a living room dance party while it played. Dancing makes me feel good. Not belly dancing right now, but just care free like I don't give a damn kind of dancing. Just me and the song without concern or worry. That freedom I think makes me happy.

But the song is over. It's another day. I feel gross really. I don't feel pretty. I don't feel energetic. I feel sad. I feel like shutting out everything and just snuggling up to one of our cats. I don't think happiness is a purring cat, but it certainly makes me less unhappy. I find it soothing at any rate.

Tomorrow is another month. Another month to try again. Another month to find something to bring myself back. Another month to maybe try new methods; new supplements; new activities; new attempts at old successes.

My new injections of Ajovy are working. My migraines are under control. I have broken through that barrier. Why do I still feel the oppression on my shoulders? Why is my back hunched over? Why can I name it for what it is, yet still feel its weight pulling me closer to earth rather than lightening me toward the air?

I should get dressed and go for a walk. Let the breeze brush my face. Smell the earthiness of spring. Hear the sparrows, jays, and robins. See the flowers starting to burst through. It's a lot of work though. Getting dressed. Going out the door. Walking aimlessly through the neighborhood. So much easier just to stay here in my robe and cuddle a cat.

After all, the new month starts tomorrow. Not today.