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.