Sunday, March 25, 2012

Things I've Been Getting Done

Spring has brought us tons of rain and a little fog, even. The fog does something to the forest, it's quieter, more private. Also, SO COLD.

Thankfully, I've got lots of warm clothing and a wood-burning stove that won't quit. I just loaded the stove with wood, and I love the way the cast-iron chirps and clicks as the fire devours its meal.

I made a no-knead bread that came out AMAZING, despite me. Bread and I have had a tempestuous relationship, but this recipe was so easy, even I could do it. Fresh bread is one of my favorite foods, so it was pretty exciting to get it right, finally. I ate the whole loaf almost entirely by myself in two days.

I was given a spice rack for christmas and it's the best gift I've gotten in a while. I made an amazing tomato sauce a few days ago, and I think I owe my overwhelming success entirely to basil, oregano, and thyme. Oh, and I used a little maple syrup to sweeten, it was simply GLORIOUS.

AND, I made a simple veggie stir-fry with rice yesterday, added a bit of peanut butter to the pan and it gave it a fantastic nutty undercurrent. Next time, I'll use a little more and go for a thai experience.

My sewing machine is being a jerk, the current theory is that the bobbin case needs to be replaced, but I can't know that for sure until we replace it and we just don't have the money for expensive repairs so I'm hoping against hope that will be the key to getting it up and running again. In the mean time, I've been improving my hand-sewing skills hugely. I whipped up a few little fabric animals for an impregnated cousin of mine, an infinity scarf for my mom, a few bracelets made of wooden beads for some of the men in my life, and have experimented semi-successfully with turning a beloved, yet dying, pair of pajama pants into a skirt. I'm not sure about that last one. It may not end well.

AND, I dyed a stained ivory shirt, a dress that makes me look like an easter egg and a pastel crocheted hat to varying shades of brown which did wonders for all three pieces.

I've been feeling really creative lately, motivated to make things around me more productive and attractive and I feel a huge push to keep learning new things, whether it be clothing alteration techniques, new recipes and new ingredients, or actual schooling, which is rapidly approaching.

I had a wicked two-day migraine that reminded me of how much better I am up here. It's disturbingly easy to forget how awful my life was back in the city. Every day was torture, no wonder I felt so depressed so often. Up here, things are easier, but I still get hit pretty often by the nausea, dizziness, disorientation, irritability, and of course, the head pain. Bending and reaching are still trouble, as are talking, laughing and exertion, but to lesser degrees. The exciting news is, I can once again listen to music! I mean, at a moderate volume and I have to skip songs with certain sounds in them and I can only listen when I'm alone because any competing noises are still just horrible, and that may seem like a lot of qualifiers for just a little pandora, but the first time I listened to Adele's Rolling in the Deep all the way through, I couldn't help but cry. I've missed music, SO MUCH.

Oh, and yesterday, I sorted through my sewing stash, organized items by fiber or type and put it all back in a semi-neat manner, labeled in plastic garbage bags. It was a long-overdue project and I'm so glad it's done.

In the house, we're putting down pergo and it's changing the look of the place entirely. The old kitchen floor is an ancient linoleum, so scratched and embedded with dirt that I couldn't get it to ever look clean. It's surreal having a new floor in the there, and I can't wait to tackle the front room next.

Alrighty, I'm going to go make breakfast now. Eggs and toast sound good.


Monday, March 19, 2012

More School Musing

Trying to plan my educational future is complicated.

I can only school online at this point; being totally unable to tolerate the noise, lights and smells that are normal in classrooms. Even if I could get a specially-lit classroom and one-on-one instruction with a teacher who wore no scent and spoke in comfortable tones and explained everything at least four times, just traveling to and from school would leave me exhausted and unable to function properly for days. There are no accommodations available that could make on campus learning a possibility. This is limiting in terms of what classes are available online, which then limits my possible degrees. But, I'm finding more options lately, and it gives me hope. Maybe by the time I get through the classes that are available to me now, there will be a whole new batch available. I'm going pretty slowly so far, they have plenty of time, really.

My educational goals remain unclear. My immediate goal is to take classes that will directly benefit my future, either educating me directly about something that will eventually earn me a living, or taking a step towards a degree that will eventually lead to me earning a living. Technical writing, medical transcription, programming, web design, creative writing, photography, special education and psychology; I have a lot of interests and not much of a clue of what would be best suited for me. But again, I'm going pretty slowly and have plenty of time to deliberate on my options. These are the things that bounce around in this achy head, is all.

Money is always tight. I qualify for a lot of financial aid, enough to cover almost all of my tuition and books (which I am SO grateful for), but I still have to pay for my ridiculously expensive internet connection, and am finding it impossible to save for more expensive accommodations that would greatly improve my success; like an ergonomic chair (we've been using a canvas, outdoor, folding chair with a foam cushion on the seat and now we both have sciatica pain), some kind of a portable device for schoolwork (a pda, tablet, or laptop would work), a tutor, learning software, et al. These are all things that financial aid and the disabilities services don't cover, that would greatly increase my productivity. I haven't heard back yet on any of those scholarships I've applied for, but if I got just one, it would lighten the load so much. Fingers crossed.

I've still got several weeks until classes start. I've been trying to fill my time with things that matter; sewing, crochet, cleaning and renovating our home, cooking healthy food, getting exercise, learning to code, blogging, and searching for (but not finding) more financial aid.

I'll keep looking, keep trying. I've finally got some semblance of a goal after a lifetime of not being terribly goal-oriented, I'm holding onto this with both hands, both feet and my teeth.


Tuesday, March 13, 2012

How Chronic Migraines Led Me to Accept My Interstitial Cystitis

I've had IC for probably ten years, but I've only started managing it in the past one.

[Content Warning: This post contains descriptions of traumatic medical experiences.]

I suppose it all started when I was a teenager. My first real relationship with a boy. My first sex. Then almost immediately, my first urinary tract infection. Then, my second and third and fiftieth and thirty-thousand millionth. They never stopped, really. And sex was the worst trigger, but once the urinary tract infections (UTIs) started, they could be kicked off by caffeine, sugar, tight pants, or dehydration. I took precautions, I saw urologists, but no one seemed to be able to get a handle on why I was constantly in pain.

Several years into the chronic UTIs, I finally had the same health insurance long enough to find myself a urologist who was willing to do more for me than prescribe antibiotics. Let's call him horrorDoc. I've never given a pseudonym to a doctor yet, but this one came to me immediately, so I'm going with it. HorrorDoc said I might have an overactive bladder and decided to do a cystoscopy on me, which is a procedure that involves a sort-of catheter with a camera snaking up the urethra, filling the bladder with water and taking a look around. I was afraid, as I was already having symptoms and couldn't really conceive of the pain that having something scraping around in my already traumatized urethra would cause, but the doctor insisted, saying that it was best done when I felt worse, for maximum information. I caved.

I found out recently that this procedure is normally done while the patient is anesthetized, usually just locally, but sometimes generally. I was not. I was put into stirrups, had the scope inserted into my urethra without any painkillers, and then my bladder was inflated with water until I couldn't take it anymore. I couldn't help but scream and involuntarily jerk about, it was a visceral reaction to the pain, which was worse than any I'd felt before. I was crying and trying so hard to be a good patient, while the doctor alternately ignored me and admonished me to calm down. Then, the stirrups weren't locked properly and in my pain I'd knocked one of them down. When my leg fell, the doctor snapped at me to get it back up, so I tried to balance my foot in the unstable rest but ended up just holding my leg up while he finished rooting around in my bladder. The nurse holding my hand/holding me down was quietly shushing me, trying to calm me down by telling me it was almost over, he was almost done, I was doing a great job.

I remember he said there was some irritation. I saw my bladder on the screen and it was bright pink, with red splotches. I remember he said there were no ulcers or indicators of anything serious. I also remember that he was unabashedly condescending the whole time because I couldn't stop crying and shaking. The pain was searing. Years of fiery, acid urine hadn't prepared me for that cystoscopy without anesthesia. When I left that office, I never went back, and my relationship with doctors, especially male doctors who plan to go anywhere near my genitalia, has never been the same.

Since that procedure, I've seen two urologists and saw both only once each. I allowed neither to touch me beyond the most cursory of external exams. Finding excuses to avoid seeing a doctor more than once was easy, I didn't like him or her office was too far. Our insurance kept changing. Easy.

So, I'd been managing my symptoms instinctively, for the most part. If I partook in sexiness, I did the whole peeing, cleaning, hyper-hydrating treatment. If I felt a twinge, I immediately dropped my intake of anything but water and started taking cranberry pills. Sometimes this worked, and sometimes it didn't and I'd end up on antibiotics... again. There have been long periods of time during which I was constantly on antibiotics. My body hated it, but I hated being in pain more, so I kept taking the pills, hoping they would eventually work.

During this time, I'd passed one stone and I had one kidney infection, but somewhere along the way, my cultures started coming up clean half the time, when I would be having somebody-kill-me urethral pain. The doctors would puzzle, give me antibiotics anyway. The painkiller they prescribe specifically for UTI pain, pyridium, stopped working. One or two of the clinic doctors mentioned interstitial cystitis as a possible source of my problems, which they basically explained was bladder or urinary tract pain with no real cause and no cure. But, I wasn't interested in that diagnosis, since it came with a) no cure and, b) the recommendation to see a urologist for a cystoscopy to confirm. Instead, I convinced myself that I just had recurrent infections and if I could somehow break the cycle, I'd be all better.

Well, then I lucked out when I came down with the daily migraine adventure and my boyfriend hurt his back because our sex life dropped WAY down, as did my consumption of alcohol and caffeine, since both trigger my head immediately. This change in lifestyle led to me not having an "infection" for over a year, and then only once or twice.

Until the day when they came back. What can I say, I had a good weekend. There was sex, there was caffeine, and there was bike riding. Consequently there was a UTI. I had some old cipro that I took with no effect. My doctor prescribed macrobid, which also had no effect and then bactrim, which seemed to have no effect until I stopped taking the cranberry pills and was suddenly practically pain-free.

I had a real conundrum on my hands. I seemed to have a UTI that was super unresponsive to antibiotics, with no bacteria showing up in my cultures, and horrible pain with no discernible cause, except for possibly my cranberry pills. After three consecutive rounds of aggressive antibiotics, either I'd managed to contract the most powerful bacteria ever, or something else was going on. So, I jumped on the internet and did a little googling and... OH. IC.

This may not have been the first time I'd come across this diagnosis, but I was suddenly seeing it much differently. First, I hadn't had an infection or sustained pain in over a year, so if there ever was an infection cycle, it would be long broken and wouldn't be starting back up again like it never left. Second, the concept of incurable pain is no longer the worst thing that could ever happen to me. I've been having incurable head pain for years now, and I can say from experience, being in denial don't help a thing.

Now, let me tell you, even after breaking through those years of denial, I am still in no rush at all to have a doctor poking around in me to confirm my self-diagnosis. I decided to try to get my past records from horrorDoc, but his old contact information wasn't working. So, imagine my emotional turmoil when I googled him and the top result was an article from 2007, saying that he had had his medical license revoked and served some token jail time for falsifying patient records, lying to patients, and performing an unnecessary radiation-type surgery on one patient. This makes me feel angry, frightened, nauseous, and kind of numb. Both horrified and relieved. Further phone calls have resulted in the news that my records are "lost". And yes, that goes in quotes.

So, I continue to be undiagnosed, officially, but I maintain that this is IC, and my internist agrees, though unofficially. Cranberry pills causing pain seems to be a trademark, probably just for how much cranberry is pushed in the world of urology, but all acidic foods can be painful. Since diagnosing myself, I've changed my diet and behaviors only slightly, and it's made a huge difference. I've been successfully managing it myself for over a year now, just through diet and mindfulness, and I very rarely have flares anymore. I know not everyone is so lucky, but I'm very happy not to have to take medication for it, and to be able to continue avoiding the urologists.

Though, that prospect is slightly less scary now that I know horrorDoc is no longer practicing. Interesting.


Thursday, March 8, 2012

Migraines, Links and School

I got this article, Pain-Wracked Migraine Patients’ Needs Targeted by Map’s Drug in my google alerts and hey, it had a bunch of pretty accurate and interesting information about migraines and some upcoming treatments! In mainstream media! WHAT THE WHAT! I get excited when this happens!

Also, if you didn't catch this one, here's a video of Jennie Garth on The Doctors talking about her experiences with migraines, or as they call them, megrim. (A warning: The video autoplays when the page loads and it is preceded by ads.) I think Jennie Garth is adorable and I love it when famous people use their fame to bring attention to unnoticed causes. Thanks Jennie!

While I'm linking, I'll be participating in the Health Activist Writer's Challenge Month in April. I'll likely change it up a bit, one post every day doesn't really work with my head, but I plan to get something out of it, whichever way I roll.

And, it might be particularly tricky because school will be starting soon. Yep, I just registered for Nutrition, and I'm excited for the upcoming quarter. I haven't yet heard back from my soon-to-be-teacher about the accommodations I very politely requested (seriously, my counselor made a point of complimenting me on my diplomacy. AWESOME.), but they're all still busy wrapping up the current quarter, so I'm practicing my patience. Isn't practice supposed to make perfect? All these years of practicing my patience and I'm still terrible at it. Maybe I need some new sayings. Patience sucks, gimme it now. MUCH BETTER.

I've been trying the coding thing again, this time with, and it's going so much better than my first attempt. I'm starting to think that I should take a real class, that this could be something I could wrap my head around. However, I'd really like to secure some kind of tutoring situation. My school would provide me with one, as part of the disabilities services, but only on-campus. I can't leave my house without migraining, there's no way I'd be able to get anything out of tutoring after travel and being out in the sun and pollution and noise. So, I'm going to continue the free, online learning until I can either figure out a way around the tutoring obstacle, get good enough that it won't matter, or lose interest in programming altogether. We'll see how it goes.

And that's what's happening with me.


Saturday, March 3, 2012

Renewal and Relief

I recently renewed my marijuana recommendation after realizing in a panic that it had expired an embarrassing amount of time ago.

The place was crowded, nearly every seat in the waiting room was filled. They had a big-screen tv in the corner playing a Rush Hour movie, not quietly. Despite my earplugs, by the time I got in with the doctor, I was starting to stumble on my words and I could feel my face falling.

It always feels wrong to see a doctor when I'm feeling my best, as they might easily doubt that my pain is as real as it is, but I also don't like seeing doctors when I'm full-on migraining because if the doc isn't familiar with migraine, they're just as likely to think I'm drugged or drunk, or simply emotionally unhinged. It gets awkward at best, insulting more often than not, and explains why I take my boyfriend with me everywhere; he's my backup, my caregiver, my advocate, and my greatest defender against incorrect assumptions.

Luckily, this doctor didn't seem to have a problem with my communication. He was patient when I explained my problems and didn't seem bothered when I stuttered and paused when I lost words. WHAT A RELIEF. We chatted for a few minutes about my health as he looked over my paperwork. He signed and sent me on my way, but as I stepped through his door, he stopped me and said, "I'm so glad that I can help you."

I smiled a probably weak and crooked smile, migraine taking over, and replied, "Me too."