The Freedom Song of the Jigsaw Girl

So I haven't been around on Dreamwidth much lately. This is for several reasons, some medical, some school related, and overall a distinct lack of spoons.

( Some discussion of Lyme Treatment, depression, and general law school related stress, also very long post. )

tl;dr summary: life has been busy and I've had a lot to process. :) On the fun side of things I got my hair all chopped off and love the new do. It's a lovely style for this soon to be 33 year old, and an afternoon at the salon was a good way to start my birthday celebration a week early. I also got myself a couple of birthday prezzies that arrived this week: new long johns that fit (my old ones were so baggy I couldn't zip the jeans over them), new nose studs (I loose them very quickly), and DMZ vol. 1, the first volume in an amazing graphic novel series. My friends are doing a brunch for me tomorrow on my actual b-day. So I'm celebrating 33 in style. ( pics of the new 'do under the cut )

( TW: Mental Health issues regarding social anxiety, self-doubt, etc. discussed herein )

Going with the flow of Lyme brain add...does anyone else think that Social Anxiety and the Demons of Doubt sounds like a good name for an indie punk band?

I'm home again. Very tired and slightly achy, but not feeling too dreadful. It was a wonderful relief to step off the plan last night and into the cool Vermont air.

Grandma is slowly adjusting to the idea of assisted living. My dad was still there when I left, and my uncle is going to be back in Spokane tomorrow. So there will be folks around to make sure that she takes care of herself properly while the assisted living application and move are handled (my uncle is thankfully handling all the paperwork and stuff).

So I'm shifting focus back to myself and school. ( Some medical stuff discussed. )

Just a quick update to let folks now that I'm still alive. :) ( I'm doing a bit better, though still a bit swamped with school and life. )

So I'm done with finals (whew!) and after days of sleep and nothing much else the brain fog is starting to lift. So hopefully I'll get back to being a little more active on my blog and in my communities. :)

Apparently May is Lyme Awareness Month.

A surprising (to me at least, as it acknowledges Chronic Lyme Disease even though the CDC says they aren't sure it exists) article by Chuck Norris on Lyme Disease. It is part 1 of a 3 part series. The other parts have not been posted yet.

I had never really considered wearing t-shirts and other things about an illness I have, but I found a whole bunch that I love over at zazzle.

Other useful and informative links:

Ten Terrific Tick Tips

Six Myths About Lyme Disease

So I slept the day away for the most part thanks to a migraine and generally feeling dreadful. I missed my one class of the day, and had to reschedule a career services appointment. Thankfully folks are generally understanding and I have a friend who shared her notes from class.

I felt so good last week that I massively overdid. Add on bizarre weather changes, an attack of allergies, and another sudden shift in weather and you have a prime recipe for migraine. I'm very glad I wrote my intro post for this weeks poetree hosting yesterday. I doubt I would have been able to write precisely what I wanted today. Sadly, I had intended to write the next post today, but that did not happen. Thankfully tomorrow is another day.

Migraines kill my appetite, and so I have had to force myself to eat today so I could take my meds. I've gotten nothing done, and am feeling rather sorry for myself. I would love to spend the week curled up on the couch and ignoring the world, but alas that is not a likely scenario. Too much to be done, and the end of the semester is approaching.

So I think I shall snuggle down on the couch for a bit, listen to a soothing Pandora station or watch an episode of something silly, attempt to go to bed early, and tackle tomorrow as it comes.

In some ways, for me, 2011 was the year of apathy. On a personal level it was neither a great year, nor an awful one. It simply was. Since I've been wrapped up in the world of law school the greater goings on in the world haven't left much of an impact this year. I noted Occupy Wall Street, the debacle that is the presidential campaign, and a few other news stories. But the majority of my attention was on school and health. In many ways 2011 was better than 2010. I spent much of 2010 being so massively depressed that suicide ideation started popping up (though I got help as soon as I noticed that ideation). Things improved quite a bit in 2011. My friends helped a lot with that improvement, as did the firewalk that I attended.

One of the biggest factors in that improvement was finding a doctor who didn't take the fibromyalgia diagnosis at face value, throw up his hands and say "there's nothing I can do for you," which is what the doctor I had in 2010 had basically done. Between my new specialist and new general practitioner, I am slowly but surely dealing with all the things causing me to be constantly fatigued and in pain. After evaluation and numerous tests by diagnosis shifted from fibromyalgia, to late-stage Lyme Disease (sometimes called chronic Lyme), and systemic yeast overgrowth. I responded very well to the anti-yeast treatment (though the restricted diet has been a bitch to get used to), and before school started was feeling pretty darn good.

I had a bit of a set back at the start of the antibiotic treatment. Irene in all her glory (which was pretty intense here in Vermont--this is a good video about her effect on my little town, and the amazing response from people here), triggered my PTSD. Oddly I had forgotten much of my storm triggered PTSD for a while. It's been a long time since it was triggered. Days before my seventh birthday an F4 tornado tore through my town and passed right over our heads. Since we lived in a trailer, we took shelter outside. We had one of those fuel-tank bbq pits. The support pole for the bbq was cemented into the ground under our carport. My parents, the neighbors and their kids, and my brother and I basically lay around that pole holding on for dear life. All the kids were on the bottom with our parents holding us down. I was terrified for our dogs who had gone into hiding early on in the storm (they came out when things had calmed down and were perfectly fine), and I was terrified for us. I will never forget the pull of the wind, the coldness of the rain or that awful sound. What really made the power of nature a nightmarish thing for me though was seeing the utter devastation afterward. We had to travel into the neighboring city to stay with friends because we had neither power nor water. On the way into town we passed by the neighborhood gas station. All that was left of that cement structure was the counter and the sign. Nothing else. The trailer park just up the road from us was completely wiped out. Not a single trailer remained whole. I struggled with fear of storms for a long time, but it got better over the years. Nearly went away completely after I left the south. Watching the river rise to nearly double it's size in less than an hour brought a lot of those old fears slamming back. I watched from my porch as tables, propane tanks and large trees floated down a river I could normally not even see from the porch. I heard stories of houses and cars going down stream. The devastation after the storm was just as horrific as it had been all those years ago, and the sense of helplessness just as strong. I was able to help some this time, but not as much as I would have liked due to my health. So it was a very frustrating time. Add that to the stress of starting back to school (Irene hit the day before classes were supposed to start), the stress of appellate advocacy (a 2L right of passage at my school) and the stress of starting a difficult medical treatment, and you have a very fragile Manda.

So I started seeing the new school counselor (who was a great deal more help than the old one), and after much debating decided to drop a class. That brought about it's own stress, which you can read about here. It was worth the relief to have fewer hours though. I was able to concentrate on the remainder of my classes and improve my attendance. Thanks to my awesome family of choice (aka my Vermont family, the Pagan Lane clan), I successfully navigated the holidays despite not being able to eat any sweets whatsoever. Due to various family members dietary restrictions our Christmas dinner was gluten-free, dairy-free (save for the pumpkin pie), and mostly sugar/sweet-free (save for the french bread slabs and desserts, which I ignored). There was even stuffing I could eat. A lot of the food was homegrown, including the godzilla chicken (giant mutant chicken-thing was the size of a small turkey). All the food was super yummy too. Got to spend a lot of time just hanging out with friends, including a couple members of our clan that I usually only get to see at Christmas. So it was a really nice holiday.

The only downside to the winter break has been that my new antibiotic (doxycycline) often makes me nauseous and since I just started it, and it's a stronger antibiotic I'm still dealing with the achy, yucky feeling that happens with each treatment cycle. I also developed an aphthous ulcer, which is a apparently the fancy name for canker sores, on the underside of my upper lip where the lip meets the gums. Did you know that canker sores and cold sores were different things? I didn't. I've actually had the sore for a while, but I was often in the habit of taking my dentures out (I'm planning on doing a longer fonsfaq post on living with dentures, especially when you're young) at night to try to get the sore to heal. Since I was staying with others I left them in (it's hard to be around other people without your teeth in). The friction made the sore much, much worse. Resulting in concerns that this painful thing was abscessing or something equally dreadful. So I left a bit earlier than I had planned, and stopped by the ER on my way home.

Thankfully it wasn't anything serious, just painful and embarrassing. I say embarrassing because the only way to treat it effectively is to leave my teeth out until it heals. This has meant going out in public without my teeth in, which bugs the shit out of me. I have coped by wrapping a scarf around my mouth or hiding behind my coat. Thank the gods that it's winter. Not sure what I would have done in summer. It's also meant being on a soft food diet (which is even more interesting when you're already on a restricted diet). Thankfully (and possibly unfortunately) I have a lot of experience with creative soft food diets due to previous teeth issues (there is a reason I've had dentures since I was 25, and it has a lot to due with bad genetics and no enamel). I'm starting to get a bit sick of things though. Hopefully this sore will heal up soon. Regardless the teeth are going back in when classes start, which is thankfully next week. I've made an appointment to get my dentures adjusted. So hopefully I can avoid a repeat of this misadventure.

So all in all it wasn't a bad year. It wasn't great by any stretch of the imagination, but it wasn't bad. It was certainly an improvement of 2010 (for me at least). Here's hoping 2012 will be an improvement for us all.

That is if I don't have to take an additional semester (though I'm fine with that--cause my health is even more important that having that nifty law school degree).

Finished my final paper for Law and Popular Culture. I must say that was the least stressful law school class ever. We watched a bunch of movies, had to lead one of the class discussions/present on one of the movies, and had to write one relatively short paper (10-15 pages). The paper could be on any topic so long as it related in some way to both law and popular culture. Creativity was encouraged. The deadline for turning the paper's in was even non-stressful since the professor made it a squishy deadline ("if you need a few more days to make it a good paper, just email me"). I still got it done by the squishy deadline, which was a good feeling. Once I got started it was a surprising fun paper to write. I even had fun with the title--Through the Looking Glass:
Examining Law and Popular Culture through Geek Goggles. Thesis=works of geek culture (I wanted it to be broader than "science fiction") allow us to more clearly examine our society and culture (including legal culture) because they are framed in a way that makes the reality less immediate to the reader; this distance allows the reader to analyse the issues presented without the initial emotional gut reaction that might occur otherwise. I use two books (a graphic novel, Green River Killer and a science fiction novel, Beggars in Spain). I choose these two books because they dealt with legal popular culture and were readily accessible. It's a rich topic and I felt like I couldn't do it justice is such a short paper, but if people are interested I'd be willing to post a copy after it's graded and returned.

Now all I've got left is one exam (Constitutional Criminal Procedure). The exam is on Friday, so I have the next two days to obsessively tab my book (very useful for open book exams) and review the material. Then it's off to the Lyme doctor's office to see if I'm ready to start the next round of antibiotics, followed by a hematology appointment on the 21st. Even with the medical appointments I'm looking forward to the break. I'll spend the actual holiday up in the mountains with my friends/chosen family, and get to lounge about my house the rest of the time. I have a whole lot of books for fun just waiting to be read, not to mention a lot of movies and tv shows I haven't yet seen. I'm also hoping I'll feel up to working on my fanfic that's been hanging around unfinished for years.

So here's hoping that no other parts of my body decide to stop functioning properly. Apparently my thyroid has decided to take a vacation--thankfully my GP decided to test this regularly--and I know have a shiny new medication to take on a daily basis. On the plus side, the massive levels of fatigue and memory issues that I was having a few weeks ago are starting to get better. For each step back, I do seem to be managing two steps forward. This is a nice change in pace as it means a net gain in progress.

As if I wasn't stressed out enough trying to finish my appellate brief and get it turned in early, I get an email from the Academic Success folks (they are now in charge of medical accommodations) asking me to come in and chat about my accommodation request. In the beginning of October I sat down with the various folks involved and discussed what was going on with my health and how I was struggling this semester. We decided the best thing I could do was drop a class. However this would take me below the minimum number of hours required to be a full-time student (From 10 to 8). I had originally planned for a lighter course load, knowing that I would likely be in the midst of a new treatment plan. However, I didn't plan on Irene triggering old PTSD scars, or my PCP changing my medications in a way that negatively interacted with my chronic lyme treatment. The beginning of this semester was kind of a perfect storm of factors that led to me needing to reduce my course load more than I had anticipated. It was a tough decision, but the one that made the most sense. Today I was told that the school was worried by this accommodation and that should I need to ask for a similar accommodation next semester I may want to consider taking a medical leave of absence. After all taking out full loans for a light semester of course work, and then having to take out more loans for additional semesters would mean a larger amount of debt. "That's a very expensive decision." No shit, Sherlock. What annoyed me most was he spoke as if I hadn't thought of this already and mourned the fact that I will be paying off student loans til I die. Problem was I had already explained to both him and the other person who was involved in accommodation decisions why a medical leave of absence was not a feasible option for me.

In fact, the one thing I stressed in every conversation with these people was that there was no way I could afford to take a medical leave of absence. In order to pay my rent, buy food, have health insurance and pay any other bills I have to be school and have access to my loans, or I have to have a full time job. I am fully aware that I will be in debt to the tune of $120,000 or more after graduating, and yes, this is a terrifying thought. However the alternative's are even more frightening. I cannot imagine trying to hold down a full-time job and go through treatment. At least being in school gives me some flexibility with my hours. So I can take naps when I need them. Since it is unlikely that I could hold down a full-time job, I would be forced to try to make do on part-time wages. I would have no health insurance, would likely be unable to pay for rent or other bills and would still wind up massively in debt due to medical bills (if I could even get the care I needed). My grandmother lives off her retirement, and my dad, though he has a stable income for now, doesn't make a lot of money. He's able to help me out a bit now and then (and send a gift here and there--mostly purchased with Amazon reward points), but only because the man has no hobbies and just doesn't spend much of what he makes on anything extra. However, no one in my family could afford to take on my medical bills, let alone my living expenses, for the two years that treatment is likely to take. My friends who I consider family are just as broke as I am. If I took a leave of absence I would have to apply for SSDI, which I likely wouldn't get because this is a fully treatable condition and I should (all things going well) be healthy in the two or so years the treatment takes. I'm a single woman, who from the government's view would be considered able-bodied, which means I would only qualify for food stamps and medical assistance for a limited time. Even if I was eligible for SSDI, it would take years to go through the process. The only family who I could conceivably see moving in with during such a leave of absence lives over 3000 miles away. My car, which is in good shape despite the mileage, has over 300,000 miles on it. Start adding up the cost of car maintenance, gas, hotel and food, then add in the rent I would be unable to pay, the groceries I would be consuming, and the medical costs.

The cost of taking a semester off would be just a expensive as the cost of taking longer to finish school. Perhaps even more expensive. Plus there are "soft" costs like trying to find a doctor who will continue on a similar treatment path (one that is working) when the disease is considered controversial by the majority of the medical community. The stress of taking on a cross-country move, finding a new doctor and leaving law school (and thus feeling like a failure, even if it was only a short term absence) would set my treatment plan back and make recovery even harder. However, if I am willing to take on a semester (two at max) more debt (fully acknowledging how substantial that debt is), I can stay where I am at and slowly work towards my two goals: getting my law degree and recovering my health. I am able to keep the doctor who is effectively treating my issues. I have health insurance so my treatment is possible. I have a large support network, but do not feel as if I am a burden on anyone. I am not at risk of being homeless. What part of "I can not afford to take a semester off" did this guy not understand the first time we had this conversation? Hopefully this go round I was able to convey this adequately, and show that, yes, I have thought this through and am fully aware of the cost.

I did at least finish my brief and turn it in. Of course since my mood was already depressed thanks to the super cheerful conversation with the academic success folks, I didn't feel elated. Instead I felt like I had just turned in a piece of crap that probably wasn't long enough and probably didn't have enough cites. Even though I felt pretty confident the day before when I was proofreading the damn thing. Later in the weekend I can work on catching up with other classes and practicing for my oral arguments. Tomorrow, I'm taking the day off from law school stuff and celebrating my birthday. 32 years on this earth. Holy shit.

Thought I'd add a short update since its been a while since I posted. My energy levels and overall health have been yo-yoing quite a bit lately. My chronic fatigue/pain specialist is fairly certain its Lyme or Lyme-like illness and we are moving forward with treatment. I'm continuing the low-yeast diet and Nystatin, and have added low doses of Amoxicillian to my meds. When I started the antibiotics I flared horribly, which my doc says is a good sign. Apparently getting worse on the antibiotics means that they are working. So treatment works like a wave. You start the antibiotic (or increase the dose), feel absolutely dreadful for a bit, start improving slowly, eventually feel a bit better and then either increase the dose or switch to a more potent antibiotic. Repeat until done. Though my understanding is that each phase things get a bit better and eventually the worst of my symptoms will be gone.

Add in Irene and the triggering of old PTSD issues (I guess as over the wicked tornado that went over our heads when I was 7 as I thought), work study (thankfully only 3 hours a week with an option for more hours when I feel up to it), and the stress of being in law school. The sum total is that I've been more than a bit frazzled and raw lately. I've been working with the new counselor we have at the school, who I like a lot. I met with the Academic Success office and Dean of Academic Affairs and officially requested a reduced course load. I had to get a letter from my doc so that the reduced course load could be done under medical accommodations since reducing the load put me at less than 10 hours. 10 hours is the ABA requirement for being a full time student. Figured it would be good to have a letter on file anyway. I'm also trying other little coping mechanisms to help get through the stress and chaos. Currently I'm trying to write out a daily "plan" that schedules out my day. It's got some wiggle room, but I have set goals for getting up, meal times, when to stop working and bed time. It also helps me note what the most important tasks to accomplish that day are.

It's about time for me to head to bed now. Goodnight all.