Wonky Socks: Better Than No Socks

Summer is kicking my ass as usual.

I've regained my exercise regimen, though I'm nowhere near as fit as I was this time last year, but I just checked myfitnesspal and 20 workouts in the last 30 days is pretty good, so I'm feeling positive about it. However this morning, I started the uphill trekking part of my routine and it was BAD. Straight away I had mild nausea, disorientation, irritability, and total exhaustion. I knew what the problem was, the heat. No matter that it was only 8am, the sun was shining and I was overheating, fast. So, I came inside and finished up in front of the fan. I still feel sick but it's going to happen eventually today anyway - summer guarantees me an existence of barf by 4, every day, without fail - but at least I got a workout in.

My mental health is a little improved, but I'm still struggling. When I realized this morning that my workout was sending me to migraine hell my brain automatically went, "ugh you suck, you can't even jog for 5 minutes without feeling like shit and now the rest of the day is ruined." Like, I'm already feeling bad, wtf brain?? But I've been trying this new thing I saw going around on tumblr, where if I catch myself doing negative self-talk I turn it into trump's voice and then whatever it is sounds absurd and obnoxious and I can rightly tell that voice to fuck off, like I would Donald, if I ever had the pleasure. I sincerely recommend this ridiculous-sounding tactic, it has literally helped me turn depressive cycles of self-despising into giggling fits.

My uterus is dealing well with the mirena and pills combo. After the procedure and insertion I bled very lightly for about two months, with sometimes severe cramps. The bleeding stopped for two weeks, and now has started again, with milder but still some prominent cramping. I have yet to get my follow up scan; money, my health, and the hassle that is the radiology dept have impeded me, but it's a priority. I mean, you can't screw around with cancer.

My IC is holding steady with dietary restrictions, which are still pretty liberal. In daily meals I avoid acids, sugars, and soy, but not all the time. I eat soy every day some days, but I am also very conscious of my body's reaction and adjust my diet accordingly if I feel even the tiniest twinge. Ginger ale has been the only thing that really pushes it for me; when I'm feeling pukey, I love a cold Canada Dry, but if I don't push plenty of water with the soda, my urethra can become angry. And I really don't like it when it's angry.

I've been trying some new things. Pokemon GO is barely usable in my rural area, but it's still a good time. I downloaded a coloring app, and it's so relaxing, and gives me a little feeling of accomplishment after completing a design. I've been crocheting some slipper-socks and the first one came out... ok, but then I lost the pattern I found online (srsly can't find it anywhere in my browser history, i'm convinced it's been lost to the berenstein 'verse) so I'm trying to wing it from memory and the second sock is coming out... ok-ish? I'm sure they'll be usable, but they certainly won't be pretty!

And that's all. :) I hope you all are doing well. <3 More...

Good News and Next Steps

Life keeps happening whether I write about it or not. So let me catch you up a little on the latest.

I FINALLY heard back from SSI about whether they are going to open my case for review. It took almost a year for them to decide not to. So I'm going to do something extreme to my hair to celebrate my relief at not having to jump through a thousand migraine-triggering hoops to prove my migraines. Maybe I'll dye it blue, or cut a mohawk, or both. Bleach and dye cost money though so we'll see.

My periods have gone absolutely apeshit bananas on me, they're now two weeks long and I had another terrifying bleeding spree that left me *this close* to going to emergency. I forced myself to eat salty and sugary foods to keep my blood pressure up and I doubled up on the iron supplements to keep my iron stores from becoming dangerously low and luckily the bleeding stopped before I felt I was in mortal danger. Well, it slowed.

So my doctor gave me micronor, which did trigger an IC flare last time I tried it - over a year ago - but since I've had the IC under control for a while, and I didn't have a whole lot of options, I went for it. It's helped, but I'm still bleeding, way more than is normal. I had another ultrasound done and they found a cyst on my ovary and growths in my uterus, possible fibroids or polyps. I'm going to have surgery to check things out in there and remove anything problematic, and also to put in a mirena, since it's my best bet overall to control the bleeding without compromising my future fertility.

A side note on periods and quantity: my doc recommended doubling up the micronor on days when I was bleeding heavily. I asked specifically what "heavy" meant, because I suspected my perspective of what was a normal amount of bleeding might be skewed. She said if I need to empty my cup (about 25 ml capacity) more than 4 times a day, that was heavy, and to take a second pill. I threw my head back and laughed, then put my face in my hands and cried. I'd already emptied my cup four times that day and it was only 11am, and this was considered light by comparison with the previous week! The doc agreed I was essentially hemorrhaging every month, and put a note of urgency on the surgery order.

My depression continues. I tried zoloft for nearly a week, but it gave me the shits and nausea so bad I was like, I'm never going to be not depressed on this pill, and I quit it. My doc recommends splitting them in half and trying again. Maybe after all this period stuff is under control, I will.

I've got a little garden going! Growing things is so therapeutic for me, I've made it a priority this spring. We got some thyme and rosemary, I resurrected a few kale plants from last year and one chard, I'm pretty sure the peppermint will bounce back from whatever rodent-related assault recently decimated it, and I got one of these grow your own mushroom kits going in the kitchen. No sign of growth yet, but I'm hopeful!

Holy cow this is more than I've written in a month. Better hit submit before I wander off or lay down and forget all about it.

More...

Coming Back

Ok, I seem to be regaining my balance for the moment, so let's stop to catch up, shall we?

I did, indeed, cut my hours at the dog sitters', and after the initial upset I felt at losing something that felt important to me (a sort-of livelihood, people counting on me, awesome dog interaction all the time), I am realizing that I am slowly regaining the energy to do things around the house, and I went on my first hike in two weeks this morning.

I'm really excited about some wool socks I made on a whim yesterday, too. I haven't sewn in ages beyond basic repairs and was feeling super down about my ability, but then I was inspired to demolish an old wool sweater and turn it into the warmest socks I've ever had on my feet. They look completely wonky, as if I perhaps made them with one eye closed and a hand tied behind my back, but they fit and are comfortable and did I mention warm? Warm.

My head continues to torture me every day, and it's been particularly sensitive the past few weeks, I'm guessing due to the weather finally changing. I'm nauseated a lot, but since I haven't been in a car in a while, it's staying under control with minimal ginger. Those anti-nausea pills were a miracle for a while there, but now I'm kind of afraid to take them, since I only recently got my pooper running regularly again. I did get some fiber powder to use in conjunction with it, but I'm still not rushing for it unless I have to. Next car ride, probably.

The IC is still here. I've read anecdotes of people having full remissions but I don't see that happening for me anytime soon. I'm not in an active flare, and I can currently get away with eating very modest amounts of acidic foods and spices, but there are some things that still trigger pain, like onions, caffeine, or tight pants. I can't complain about it though, considering how ridiculously restricted my diet was this time last year, and oh boo hoo I have to wear stretchy pants for the rest of my life, what ever will I do with all this comfort?

Though, it's funny navigating life as a person who doesn't drink alcohol or caffeine, other people's addictions become very apparent very quickly as they loudly proclaim their inability to EVER go without [drug of choice] and how it's the only reason they get through [minorly unpleasant life experience]. Actually, meat eaters do this with me too, but not smokers, interestingly. I think smoking has just enough stigma now that peer pressure isn't cool anymore. I'm still a jerk (apparently) for telling people not to smoke around me, but they are also a jerk for spreading their toxic clouds of cancer all over, so it's less awkward I think. For me, at least, haha.

And I've joined a forum or two to try and forge more connections in this world. I've been too isolated, so I've got to make social interaction part of my self-care routine, whether my introverted self likes it or not.

More...

Peaches and Choices

My food has been repetitive and processed. Don't judge me.

I have started eating greens from my little garden, so that's new and exciting, but otherwise, it's been basics like quiche, chili, potatoes, brown rice, far too many delicious vegan junk foods, and - oh yeah - fruuuuuit.

ALL the produce is coming into season around here and I'm so here for it. I've been living for grapes and pears lately, but that's about to expand into the wonderful world of stone fruits! Bring on the peaches! And I've decided that this summer it's going to be required to have watermelon in the house at all times.

Now that I can eat soy again, I've been going a little wild with it. I forgot how good veggie burgers could be, and the veggie dogs! I'm just a sucker for anything I can slather in mustard and ketchup. I've been making pizza pretty frequently too, and while I usually completely bury the crust in a mound of roasted veggies, I'm noticing I really am a starch junkie, and I've been thinking about how to reduce the wheat and sugar in my diet, while still being a happy person. I know from getting off addictive foods; five years ago I never would have believed I could cut the cheese (heh) because lactose had its hooks firmly in my brain, but after only a week or so off it, I felt much better and lost 99% of the cravings. Cheese really is overrated! (don't tell cashew cheese I said that, I didn't mean it, I love you) So, I hope I'd feel the same way about those refined sugars after a short time? Maybe?

However, I've been having some IC twinges lately, which means this liberal diet does not get to stay as free-wheeling as it's been. But in moderation, I seem to be able to eat just about anything! I still haven't tried any real quantity of citrus or other acidic foods at a time, but I've gotten real brave with the soy and spices, and the repercussions have been very mild thus far. My aim is to keep it that way.

In other health news, I was strongly considering getting an IUD to deal with my heavy periods, even though it releases progestin, the same hormone that gave me such a terrible IC flare several months ago when I tried the pill for like four days. My doctor thinks it will be ok, but I really don't, and many other women on forums report adverse IC effects, so I believe them and choose not to risk subjecting myself to that pain. At least for now. I've been slowly regaining the ability to live after my last flare, I'm not even trying to test myself again. And by that I mean I had suicidal thoughts and was existing in such a constant state of panicked survival, it took months after the pain was over for me to not scrutinize everything I ate obsessively, or to feel fear when I felt the urge to urinate. I need to feel normalish for a while before I try something that might shatter it all to bits. I've still got the migraines and intense periods anyway, so it's not like I'm getting comfy over here or anything.

Anyway, I can't wait for the peaches. I can almost smell them now.

More...

Coping, Not Hoping

My periods have become frightening, and as my latest cycle started, I tried to calm my constitution as well as I could.

To feel more prepared, I spent the first day making menstrual pads from ill-fitting flannel pajamas. It did make me feel better, a little more in control, and now I have several more cloth pads. I love win-wins.

That night I had a vivid dream of nursing my newborn baby. When I woke up, I told my boyfriend about the dream and he asked if the baby was a boy or a girl. I don't know, I said, it didn't matter. I was shattered by the dream, felt absolutely mournful for the baby that was never mine. I curled back up under the covers and cried.

I'm too sick to have babies. My head likes to torture me, and now my uterus might be trying to kill me; but that remains to be seen, it might just be aiming to for grave illness. Actually, my symptoms did improve a bit with the iron supplements and other remedies I threw at it, so that gives me optimism that I won't bleed out before I can get some help from a gyno, at least.

And my migraines have gotten really sharp lately, which may also be period related. I do pretty well coping with the dull and throbbing, but the sharp migraines are a whole other thing. They can easily render me fetal, or turn me into a pacing, panicking ball of distress. I'm keeping the anxiety at bay pretty well though, with various snake oils I've collected over the years, and with meditative techniques. I looked like a woman in labor the other day, I was bent over the bed, rocking and moaning as the pain closed my eyes and brought my head to the sheet. It felt better to move my body as I rested; I can't seem to keep still when these sharp spikes hit, plus I was sort of stretching my back as I rocked. But it was only intermittent rocking, because the nausea shows up for every single one of these parties lately.

However, the cyclical depression I've been experiencing seems to have faded over the last two months, and I'm not sure what I'm doing differently, but I'm relieved for the break.

The IC seems to be under control, I've tolerated moderate amounts of spices and small amounts of acids. I'm definitely still taking it slow, because I really don't want to lose this progress. I can go out to eat again! It feels like a miracle, to have this much freedom in food. Taking the citrus slowly doesn't bother me at all, I'm too busy relishing the lack of urethral pain.

But still, I'm too sick to have babies. That dream really brought it all front and center and it feels like every conversation ends with that conclusion, even if we started at what produce should we get at the store.

If I had more support. My partner is not available for full-time parenting and I can't imagine a financial situation in which he would be. I don't have any family or friends that would be up to co-parenting with me. And dogs are about all I can handle on my own, and let's be real, I need help with them on my bad days, too.

Wanting a child is selfish, sure, but it's also a biological imperative that is difficult to ignore, logic withstanding. If there was a positive trade-off it might be easier, a great career or loads of traveling, but no, just me and my sick.

There's always hope for the future, but I find it difficult to live with hope, at least not too much of it. Hoping can lead to waiting, and of course to major disappointment and maybe sometimes to wish fulfillment, but we chronic migraine people tend to have this for a short while or forever, especially when we're medication resistant, so hope is a thing with feathers that I'd shoot down if I wasn't a vegan.



More...

Food: I eat it. Do you?

I had a friend suggest that I should write about food. I didn't immediately disagree with the suggestion, so I'm going to give it a try.

There will be no guarantee of pictures, because an extra step when I'm not feeling well or my camera is being difficult might mean I post nothing at all, and formatting posts makes my head hurt, so more than likely I'll just describe what I ate and how I made it.

Starting with today.

I had a burrito stuffed with pinto beans and brown rice for breakfast! Exciting! but really, this is one of my staples, with a million variations. The flavors are easy to change, it can be a burrito or a bowl, and most importantly, it's easy. Reheating and assembly can be done in five minutes with the microwave, and if I have more energy to invest, it can be quite the flavorful meal. Today's burrito was simple, but tasty. I started with about half a cup each of (all pre-cooked) pinto beans, brown rice, and a small handful of red bell pepper. I added just a few tablespoons of broth (or water) and seasoned with salt, garlic powder, nutritional yeast and a little oregano. I let that simmer for a few minutes, stirring frequently until it smelled enticing and the broth was cooked off. No one likes a soggy burrito. Once the filling was ready, I wrapped it all up in a standard flour tortilla and enjoyed.

I was craving sugar for lunch, so I went for another tortilla-based meal, a peanut butter and jelly 'dilla! Not a quesadilla, but a pb&j 'dilla! I swear I feel ridiculous every time I explain that to someone, but I continue to use it, so. The only jam flavor sanctioned by the world of Interstitial Cystitis is blueberry, so that's what we have, despite my forever being much more of a strawberry or raspberry kind of girl. Ideally organic, no sugar, preservative free, and seedless, if we're shooting for the moon, but IC. Actually this is an experiment; since my urethra has been pain-free for about a month, I've begun very slowly introducing foods that have caused me pain in the past, starting with ones I wasn't sure about. This jam is the first one that I was fairly certain caused me pain (citric acid is the culprit) so I'm really hoping the good streak continues. What if my flare is over?! Dare to dream, kids.) So, I smeared my plain peanut butter and my risky blueberry jam on a tortilla and dry fried it for a few minutes on each side. Do be modest with the jelly or it'll ooze out the sides as it cooks. Unless you're into that sort of thing, I don't know your life.

I snacked on Miyoko's cultured cashew cheese, that stuff is so good. The only varieties they had at our local whole foods were the smoked farmhouse, which tastes like smoked gouda heaven, and the herbs de provence which is a smooth, tangy, cultured farmer's cheese covered in herbs.

For dinner I'm going to eat split-pea and lentil soup, and I'll make some fries. For the soup, I cooked a whole bag of dried split peas with a cup of lentils, a few bay leaves, oregano, parsley, a little liquid smoke, salt, garlic powder, and the teeniest touch of onion powder. That's another dangerous ingredient, the onion, but I wanted to see if I could tolerate trace amounts, and so far so good. I also add coconut milk to taste at each serving. Sometimes I want it creamy and sometimes I don't, it's good both ways.

For the fries, I chop a potato of any variety into sticks, place them on a greased cookie sheet, salt, and bake at 425 for 20 minutes. Flip them over and bake for another ten or until delightfully crispy, turning them every ten if necessary. They take longer the thicker you make the sticks, at 1/4-1/2" they're usually done in 30.

Today's diet was distinctly lacking in green vegetables, because we don't have much in the house right now. I'm taking my multi-vitamin every day, a habit I've maintained for several weeks now, and that will compensate for any gaps until we can go shopping again.

Some days I eat healthier than others; a lot depends on how I'm feeling, what I've got pre-prepped in the fridge, and if we've been able to get to the store, but my goal is a plant-based, IC-friendly, vegan diet, and I absolutely want everything I eat to be delicious.

More...

Catching a Pee Break

I'm officially experimenting with IC trigger foods! With success!

I'm a little afraid that by writing this post I'll be jinxing myself, but in the past week I've eaten moderate amounts of soy, chili powder, cinnamon, and tart apples and over the next week, if all continues to go well, I plan to try more soy, more spices, and eventually onion and citrus. I am really excited by the idea of being able to have lemon in my tea again.

I really thought that flare would never end. It lasted over six months, and I felt every moment. I'm really trying to temper my hope because I may not be able to have certain foods ever again, and I've got to be prepared for surprise symptoms. Even if every ingredient comes back clear, I'm going to be really wary of acidic and spicy foods for a long time, and will only very, very gradually increase them in my diet. I don't plan to ever drink alcohol again, for both migraine and IC reasons, but caffeine I may consider adding back as a very rare rescue head-med.

I had to pee in the middle of writing this and I expected to feel pain. It's just been going too good. I can't imagine if my migraines ever went away, would I still be psychologically driven to run from light and noise, after so many years of them being intolerable? Nah, I'd go to every outdoor music festival I could, who am I kidding?

And so it will be with the IC. I might just eat salsa again, with some luck and bravery.

More...

Hippocrates May Have Been On To Something

I learned to cook out of necessity, and I didn't always enjoy it. It was a chore; I didn't have any real skills or knowledge, so I used a lot of prepackaged foods, and there was inevitably a huge mess at the end of preparations that no one wanted to clean up. Oh, the humanity.

As a child I rarely helped in the kitchen, save for shucking corn or peeling garlic, which I enjoyed mostly. I also was in charge of the crescent rolls on holidays, which felt like an awesome responsibility, though they were the pillsbury kind in the tube so the hardest part was remembering to set the a timer while they baked.

As I got older, and particularly after I moved out and was able to rebuild a real relationship with my stepdad, he and I started shopping for groceries and cooking together. We made lasagnas and soups and ravioli and potatoes au gratin, and I learned to clumsily chop vegetables (I insisted on using a steak knife for ages) and how long to cook them. I made complicated, intimidating dishes by simply following the steps of a recipe, and I learned how to tweak that recipe to suit my own tastes.

I started experimenting a little more in my own kitchen, but was still shy of herbs and spices, and rarely touched the cookbooks on my shelf, instead relying on boxes and cans and plenty of oil for frying. Most of what I made tasted good, and got me more motivated to learn, because I am nothing if not picky about how food tastes, so gaining control of that ability was like magic to me.

But what really got me cooking was getting sick. The more I read about migraines, the more I realized that the preservatives, processed foods, and artificial ingredients I was eating could be having a direct affect on my head. I was embarrassed to note I hadn't intentionally eaten a green vegetable in who knows how long, besides perhaps the occasional dressing-soaked salad.

I wasted so much produce that first year. Cooking it badly, forgetting about it, or being too sick to cook for a week or more and finding it rotten soup in the fridge far too late; I hated throwing food out, but this was not food anyone could eat. My turning point was the discovery of green smoothies, and I went through a phase of several months of drinking my liquefied greens every morning, with fruit to taste of course. It was a revelation, and my body felt so much healthier. I resolved to learn to cook better, despite how bad I was at it or exhausting it was or how big a mess I had to clean at the end of it all, because I really liked feeling stronger, and it was clear food had a power that I'd never credited it with before.

Let food be thy medicine and medicine be thy food.

Hippocrates

So, I kept cooking and I got better at it. It took a few years of accumulated knowledge - of reading cookbooks, taking nutrition classes, hours and hours of internet research, and even more spent in the kitchen making mistakes - for me to be as comfortable and confident with food as I am now. I'm able to improvise and try new ingredients without a hint of fear. I know how to fix mistakes and when to toss it and start over with no regrets. I'm still endlessly searching the internet for techniques and ideas, new and improved or old and perfected ways of cooking that will make my mouth and body happy. I would even like to take classes, under the right circumstances. That's the best part about this hobby, besides the edible rewards, there's always something new to learn.

I consider myself really lucky to have the comfort I do with cooking, especially after being diagnosed with IC. So much of this illness revolves around diet, if I didn't know how to cook I'd be miserable. Either I'd be eating nothing but questionable veggies and rice or I'd have given up entirely on the diet and gone the route of drastic medical intervention. I'm not trying to judge or look down upon people who do live like that, because we've all got our own circumstances and make our own choices, but I'm truly appreciative that I'm able to manage my IC (and my migraines, for that matter) the way I do.


More...

The First Steps are the Steepest

So, I finally told my doctor that I am sometimes horribly depressed and it often coincides with menstruation or ovulation, and also my periods are brutal and heavy and painful and she prescribed me a progestin pill. I was hesitant until she said it might stop my period, I am ALL ABOUT THAT.

My periods have gotten worse and worse over the years, and it's been really affecting my life for the past six months, probably longer really, but my head affects my life, and my IC affects my life, and the depression affects my life; the period problems kind of blended in with all that for a long time.

I started it on day four of my period, and the bleeding did not miraculously stop, but my cramps sure did, almost immediately. Maybe they were already on their way out, but I doubt it, and I got all excited. My head did hurt a little more with exertion, but it was nothing I couldn't handle at first.

Unfortunately, my IC symptoms went out of control after a day or two on the progestin. I didn't connect the two right away, not for another few days, but my diet has been perfect as far as I know, and I'm pretty sure I don't have a UTI, so as soon as I realized the only other change in my routine, I stopped the pills and now, 48 hours after my first missed dose, I'm finally starting to feel definite improvement.

The migraines are hard to deal with, but I've had time to adjust to the sacrifices. They've taken away relationships, my ability to work, and so much of my freedom, and I thought I was coping with it rather well for a while there, but the interstitial cystitis has really showed me another side of myself. I didn't know the depression could get this bad, and I could live through it. I didn't know I could handle this much pain, and still walk around like a semi-normal person.

The migraines often come with so many other symptoms - slurring of words, dizziness, irritability, and confusion, for example - that I am not always totally with it when the worst of the pain is hitting. But the IC has no cognitive impact, I feel it completely and my faculties are cruelly intact. This is torture. This is shake your fist at the heavens and curse deities for having forsaken you pain. Sometimes I wish I wasn't an atheist.

But, it's getting better! At least I'm not crying at every pee anymore. The pain is still substantial, but going from a 10+ on the pain scale to an 8 means the world. It means sanity.

And even though the stair gave out under me, I think I just took my first step towards something better.


More...

Filling the Jug

I'm feeling better, for the moment, and I am taking care of a few medical things from the never-ending list of medical things I have to do.

The most interesting of these is a urine histamine test, because it requires me peeing into a jug for 24 hours. It's a large jug, but I'm trying to ignore the fear that I'll fill it up by noon. What do I do then? Start filling jars? What if I run out of room in the fridge? Will the neighbors mind if I ask to store some of my pee until tomorrow? I was half-convinced my fears were irrational until I started filling the jug and it's already a quarter way up at 10:15.

I'll be fine, I have jars.

I'm also getting a lipid panel, so I have to fast for 9-12 hours beforehand. I get emotional when I'm hungry, and needles are not my favorite, so it could be a scene.

The mornings have finally turned cold in the redwoods, and I sense that my walks will start getting longer and longer. I was frustrated with my progress over the summer, I exercised more than I thought I'd be able to, but I didn't increase my time, my stamina, or my strength, and I couldn't help but feel discouraged by that, even though it was for perfectly good reasons, like I was coughing up my spleen for a month, and before that I could barely walk from the IC pain, and before that it was all explosive heat migraines, all the time. I was finally able to get back out on the mountain last week, and my struggle was real. Breathing hard, stressing my head, and taking rests felt like a step backwards, but three days in and I'm already starting to bounce back. I took our hill like a champ this morning, despite having interrupted sleep and a waning IC flare. Yay!


More...

The Sick Has Taken Over

I have been feeling like sheeeeeeeee-it.

The depression and anxiety are totally out of control, until they aren't and I'm nearly fine. It's very much hormonal, and very fucking frustrating.

I usually try to avoid swearing here, but since I haven't been around much, I'm not going to stifle one iota of this writing momentum I'm trying to build up, so if I drop a few fucks, shits, and assholes, well, I guess you're finally getting to know the real me.

I got the enterovirus, or something similarly coughtastic, and it's been mothercracking WEEKS of this shit now and I'm so tired. Actually this is the first day I've felt somewhat normal, singing and dancing while I clear out the MOUNTAIN of dishes in the sink. Now there's just a rolling hill, and I'll tackle that once the precariously piled clean dishes dry in the rack.

My head doesn't appreciate the coughing AT ALL, so that's been miserable too, except I can't medicate because smoking triggers what? COUGHING. SONOFAMONKEY.

Edibles are an option when we have the stuff to make it ourselves, but we haven't for the past few weeks and resorted to store-bought and guess what? It's all either too heavy to gag down while 'graining or inflammatory to my IC, so NO.

The IC has been a dick, too, but that's mostly my fault because in the midst of all the sick I wanted Chinese food so bad I didn't care about the repercussions and ate the hell out of some delicious chow fun and mediocre potstickers. I felt the pain for a week! The hell, urethra, I have no idea what I did to anger the renal gods but they hate me.

I got some bloodwork done, and got the results back but no comment from my doctor yet, so I'm going to share my abnormal results with you and we can all speculate.


Test - my number (what is normal)
Vitamin D - 22 (30-100)
White Blood Cell Count - 3.6 (4.0-11.0 K/uL)
Hemoglobin - 11.8 (12.0-15.5 g/dL)
MCH - 25.8 (27.0-33.0 pg)
Neutrophil - %39 (49.0-74.0%)
Monocyte - %13 (2.0-12.0%)
Abs. Neutrophil - 1.4 (2.0-8.0 K/uL)

So, the internet says these low blood cell counts could just be anemia, which I've had off and on for years, and I suspect being in the midst of the sick has also thrown off some numbers, but then it also suggests cancer, which is so damn rude, but that's what I get for googling instead of emailing my doctor.

So, I started taking vitamins again because I'm still too tired to properly cook for myself every meal, and that might be improving my energy, but it could also be that I'm only having five coughing fits a day instead of 16,000.

I haven't hiked with the puppies in ages, and I really miss working out, so hopefully I'll be able to reclaim that in the next week, but as soon as I feel well enough it'll be time to get my flu shot which knocks me down for several days too. Weeeeee!


At least I'm pooping regularly.







More...

What is Good

I'm still quite a bit in survival mode right now.

The IC is calming down finally, but now my period has started for another whiz-bang of a pelvic party. Ibuprofen helps with the cramps, but I am chained to the house for the first several days of my periods just for their heaviness, and besides that my head is so, so sensitive, and now I'm finding myself feeling sad and really lonely, so I've decided that I need to focus on what is good.

~*~**~*~A List of What is Good~*~**~*~

Daiya Cheddar (I'm still on the IC diet, and still praising the vegan overlords for the soy-free, dairy-free genius that is this stuff)

Avocado

The hit 90's tv series Charmed, starring Shannen Doherty, Holly Marie Combs, and Alyssa Milano

Pot, which is saving my head, and the bubbler that is saving my lungs

Being able to exercise

Tumblr (I'm starting to lose time, so it may be time to back away)

My boyfriend. Having support is invaluable.

The internet, at large. It is my lifeline, and my major time sucker. Pros and cons.

Tortillas. Everything is better wrapped in a tortilla.

Books. The thing about rereading old favorites is that the book stays the same but sometimes we've changed. The same happens with all kinds of things, but books are so personal to me, it's always surprising to reread something I've read a thousand times and have totally new thoughts about it.

Sleep. Just can't get enough.

A night warm enough to have the windows open and the sound of crickets lulling me to sleep.

Dogs, because they help me live in the moment, and find joy in just being alive.


More...

Food and Measuring Moments

So this has been my worst Interstitial Cystitis flare since I started actively managing it, and as a result, my diet is ridiculous.

I went mostly vegan almost a year ago, which cut out 99% of dairy, eggs and seafood from my diet. It's been going great and I haven't looked back, but now I'm faced with some severe dietary restrictions to heal my urinary tract and eating has become complicated in a whole new way.

The IC diet actually encourages dairy, which is annoying, but eliminates all acidic foods (tomatoes, citrus, pineapple, vinegar), most spices (cinnamon, paprika, cumin), soy (tofu, soy sauce, almost all the veggie burger type products), onions, pickles, chilis, and basically 80% of the ingredients I use in every dish I make.

So, I've been eating a lot of potatoes, brown rice, beans, and veggies, and thankfully avocados are still safe. Eating so blandly has made it difficult to get adequate calories some days, so I've started eating selective junk foods (kettle chips, nutter butters, mmmm) and I've started cooking with oil again, occasionally.

Another blessing has been daiya cheddar. It's fake cheese that isn't made from soy and it's seriously saved my taste buds on days when I could not cook and had to whip up a plain potato burrito, or something similarly sad. It tastes like a cross between cheddar, american cheese, and nacho cheese, the last two of which are totally nostalgic flavors for me, so I feel like I'm getting that childhood treat when in actuality I just feel too crappy to make myself anything better. We take what pleasure we can get. It's also particularly tasty over a baked potato and a load of steamed broccoli, which is what I had for lunch today.

The pain is slowly decreasing, but I keep accidentally eating foods that are tainted with irritants and now I suspect that my multi-vitamin is triggering pain, which is ironic because I'm only taking it because I'm having trouble nourishing myself on the IC diet.

Hahahahasob.

My head's been temperamental lately, too; the weather, the IC, my restricted diet, the abdominal assault my period waged on my body last week, who even knows the triggers at this point, I'm just trying to keep my sanity.

When I feel like this, just raw from the surviving, every bit of tenderness that's sent my way feels transcendent, small kindnesses are miracles, and beauty is almost painful to behold. I woke early one morning to a fogged-in forest and despite my aching eyes, throbbing back (WHY? IDK), loneliness and hopelessness, the branches of the towering redwoods faded into the fog in such a way that I thought I might die from the magic of it.

Blessed are the poor and sick, for we know the true measure of a moment.


More...

Fitness, Limits, and Flares

Even with how hard I've worked to get physically fit, my head is only slightly better. I'm grateful for the improvements I do feel; I can get out a little more easily, my recuperation time is usually less, and the pain and debilitation are, on average, less than they were when I was neither exercising nor eating vegan.

But I have definitely hit a wall.

My body continues to get leaner and stronger, but my head is stubbornly refusing to improve any further. Which I thought was funny this morning, when I recalled that my burning lungs and aching legs were what used to stop me from reaching the top of our hill when I first started out. Now, I make it to the top wishing I had farther to go, and I wish I could run marathons but my head won't allow more than a few minutes of jogging.

I have been able to continue my now daily hikes with the dogs during this petit heat wave by going out as soon as I wake up, and waking up early. I'm risking getting eaten by a mountain lion, but there aren't that many of them out here, so I think my odds are good. Hopefully! I carry mace, that comforts me a little.

The yoga continues, and my balance has gotten so much better, but those inverted poses still elude me most of the time. But then I feel like an ass for complaining at all, because I used to not be able to touch my toes, because I couldn't reach and because my head wouldn't allow it, but now I can, I just have to breathe carefully. There are improvements. I can see them. I just want more, and I don't think I'm going to get it.

I've graduated from doing pushups in cat pose to doing regular modified pushups, and that feels awesome, but again, it's something I have to breathe through very carefully.

Besides all that fitnessy stuff, I really miss school. I don't know if I can attend a class and exercise at the same time. And take care of my dogs. And myself. I don't know! But I want to try. I have been playing around with some free online courses, like what they have on coursera, I only wish they had a broader selection. And that I could earn a degree that way, that would be nice!

I'm in the middle of an IC flare, so that hurts. It was triggered by a few things, I think. it's tomato season, number one. And probably numbers two through five, I was really having a tomato party for a while there. Then, there were the popsicles; ice lollies, frozen fruits bars, whatever you call them. I bought some from the store without reading the label (I know, WHO AM I??) and they had some kind of fake sugar in them. Before I even realized that though, we got some popsicle molds from the dollar store, and I filled them up with a green juice, naked or green monster or something, and they were DELICIOUS, but acidic as hell so the combination stripped my poor urethra of its protective linings and now I'm crying every other piss. All I can do is restrict my diet severely (no hot sauce or tomatoes, how will I even live) and take baking soda and antacids a few times a day.

In comparison, my head seems mild. Except for the nausea, god it is just ever-present lately. But I've been using these nice ginger chews, called Reed's. They're yummy and really helpful and much less sugar than a whole ginger ale.

I miss being able to write here frequently. I've lost my voice, it seems. I wish I had a working camera, images never fail me.

Hope you all are well. And thanks for reading. <3 More...

IC and Me

I wrote about having interstitial cystitis nearly a year ago, and since then, I've become the master of my own urethra.

I had a flare a few weeks ago, my first in ages, and I was really happy with the way my self-treatment worked out. The best information I've found about IC has come from other patients, on forums, and I owe those people a big thank you for their tips and advice. The best way for me to be grateful is to pay it back, so I'm going to share my own experience for all the future anxious googlers with IC. Hello! I hope you find some helpful info here.

At the first twinges, I suspected it was the orange juice. I never have more than a two cups a day of any citrus, and I never have it more than three days a week, and that usually works for me, but I think I'd worn tight pants, or committed some other IC sin that in combination might have set me off. I remember the orange juice, though, because I had to cut myself off and jealously watched my boyfriend finish it over the next few days.

This happens less than once a month lately; I'll have a day of urethral pain, but once I take measures to be kind to my pelvis, it will usually clear up. This pain continued, however, so I had to investigate further. I upped my water intake, stopped wearing underwear, and only wore non-restrictive pants. To make sure I didn't actually have a urinary tract infection (UTI), I took a dose of D-Mannose. If it was a UTI, the D-Mannose would flush the offending particles out of the urethra and help the healing to begin, and the dose would not increase my pain. If it was interstitial cystitis, the pain would only get worse after taking the D-Mannose. The trouble is, with my IC, it can appear with a UTI, masking the advancement or decline of the infection itself. So, when my pain worsened, it only confirmed the presence of an IC attack, not necessarily the absence of a UTI.

I used to use cranberry pills in the same way, but find them to be too destructive to my urethra. The pain from a D-Mannose dose will last hours, but from cranberry it can last all day, or longer. I actually avoid cranberry juice and supplements now, and I suspect my overuse of them during my recurring UTI years contributed to my developing IC. (However this is just my own theory and there is no known cause for IC, though frequent UTIs and other pelvic disorders do seem to play a part in its development.)

The symptoms I experience during an interstitial cystitis flare are very much like what I experience during my urinary tract infections: burning like acid-fire during urination, with most of the pain centered on my urethral opening, and that pain can last for twenty minutes (forever?) after each urination, making the next troublesome symptom, the constant need to go and often only producing a few drops, even worse. As soon as my lady bits have calmed down after my last piss, I've got to go again. Torture, is what that is. Then there's the blood in the urine, a heaviness and pain in the bladder, the pelvic bloat, and sometimes even a low fever.

At this point I have the option to take pills specifically for urinary pain relief, we got them at our local pharmacy, Phenazopyridine Hydrochloride 95 mg (generic for Azo), which I'm pretty sure is the same thing as the prescription for pyridium I used to get for my UTIs. It works GREAT for that pain, but doesn't do a thing for the IC. This has been another indicator of having an IC flare instead of a UTI, historically, but I skipped it this time, because I was pretty sure it was the former and saw no need to waste the pills.

For pain relief, I can use a heating pad or ice packs, or I might drink several cups of water then take a hot shower and pee at will. I know, that sounds super-weird, but I think it helps psychologically, if nothing else. The water in the shower eases the pain quicker, and I feel like the more my IC flaring body pees, the faster the symptoms pass. Plus, when urination becomes unendurable, taking it from a 10 to an 8 can feel like the world's biggest relief. It's something.

The only thing that helps my IC pain quickly and significantly is a topical lidocaine my doctor prescribed me. Specifically it is a tube of Lidocaine Hydrochloride Jelly USP, 2%. After a painful pee, or when the burning and aching just won't fade, I slather a bit of that on my urethral opening and the relief is fast. It doesn't usually take the pain completely away, but it can bring it from a 10 to a 5 within moments, so again, it's something. However, I wouldn't want to have to rely on this method for long periods of time, since I have to reapply after every pee, which I estimate to be 20 times a day on a bad day. Honestly, it may be more, I've never counted because it's gets ridiculous and upsetting. But, the point is, who knows what all that lidocaine could do to my junk over time? I'm concerned, but so far it's my best option for pain relief.

So, the pain got worse from the D-Mannose, I suspected IC, and my next move was to switch to a way more alkaline diet, nothing but water to drink and very mildly spiced foods, limited refined sugars and flours, and absolutely NO acidic foods. I also took a teaspoon or more of baking soda in water each night, which actually can help with the pain, if I catch the flare early enough. As I changed my entire routine to ease my symptoms, I looked for any little thing that could be triggering the IC, and I was delighted to realize I'd recently decided to try liquid stevia in my tea. I was delighted because that meant I didn't have to give up my beloved tomatoes and peppers and hot sauce and vinegars, and I'd just have to limit the stevia. Which is actually a rather nice sweetener and I would recommend it to anyone looking for an alternative to sugar, unless they have IC, then I'd tell them to try it carefully.

BUT, I suspect the real problem might be the the alcohol in the liquid stevia. I was only using a few drops at a time, so it seems like an intense reaction to have, but whenever I can rally up the funds, I'm going to try again with a non-alcohol-based product and see if I have better results. I really like the stevia, I hope I can use it in other medium.

For me, prevention is really the key with IC, and I find I can get away with almost any bad behavior in the short term if I've been otherwise chaste. I consider myself very lucky that my IC is only as bad as it is, I know and have heard of women (do men even get IC? I have only ever seen women on the boards. Huh.) who can barely walk, who pee every fifteen minutes, 24 hours a day, who eat depressingly restricted diets that don't even always help, who can't leave their homes, ever, because the pain and other symptoms never recede. Sure, I had to give up alcohol and caffeine and will never wear skinny jeans (WOE IS ME), but I can still have OJ and even lemonade rarely, all the tomatoes I want, vinegar for everyone and sometimes I wish I had a pressing reason to give up sugar. I've had to make sacrifices, but I'm just grateful I've been able to keep what I have. Mushrooms, don't ever leave me.

So, the symptoms faded fast once I cut everything out, within 24 hours, and then I just added it all back in after two full days of no pain, minus the stevia. There have been no further twinges, and no more frequency in urination than usual. The flare has passed and there doesn't seem to be an underlying infection, so I'm pretty excited to not have to see a doctor.

When the flares fade, I'm not left symptom-free, unfortunately. I always get up several times a night to pee and I have urgency issues and full-on urinate in my pants at least once a year. My symptoms increase with every trigger I risk. Caffeine, alcohol back in the day, tight pants, sex, stress, and citrus can all increase my symptoms, and while I've cut some triggers out entirely, others are harder to avoid, (or I love them. Come here, tomatoes, let me show you my love.) and so I try to be mindful of my choices, and pay attention to my body's subtler signals, because she does tell me when I'm screwing up, if I'm willing to listen. And if I'm not, she'll start screaming at me via IC or migraine eventually, so it's really much better to pay attention to the whispers.



More...

A Little Gratitude for the New Year

I can only hope that the rest of this year is as quiet and satisfying as my new years' eve and day were.

My boyfriend had work for much of the eve, so I had dinner and the later cocoa alone, just me and DS9 and the puppies. I spent the evening making a list of goals and wants for the coming year(s), then went to bed by nine. No midnight shenanigans for this lady, I need my sleep!

The next morning, I tore the goals into strips and burned them individually, while repeating to myself these things that have become so important. It was a nice moment of reflection.

I then made myself a vegan breakfast feast to welcome the new year. I'm obsessed with the Happy Herbivore, and I got these recipes for french toast, tofu scramble, and country potatoes from the first book. I highly recommend these books and the blog for vegans and omnis alike. I was making an obscene amount of nomming noises as I ate, and I'm really proud of myself for taking a picture to share because it was a phenomenal start to the new year.

I've been cooking a lot lately, from the Happy Herbivore resources and other vegan books I've gotten from our local library, plus the internet: it is an endless source of inspiration.

I'm not sure what to expect from this year, things feel very in flux right now. But rest assured, I'll let you all know if anything interesting happens.

And while I'm thinking about the future, let's talk about this blog. I've been flying by the seat of my pants here lately, and I would like to give myself a bit more structure. So, topics I'm planning on addressing in the near future include, but are not limited to: 1. A trip to smog the car: when invisible disabilities become visible/migraining in public. 2. Interstitial Cystitis, How I Deal. 3. In-depth examinations of exercise on my head. 4. Food. 5. Kids: should I have them? 6. The power of woo: a skeptic's consumption of homeopathy, the mind-body connection, and herbal remedies.

What do you think, readers? Any of these topics interest you? Is there anything you think I should write about? Any questions? Comment, email me, let me know.

Because sure, I'm writing for me, but I'm also very much writing for you, and let's be honest, writers tend to like being read. Thanks for reading what I write, and for the comments and emails, you all give me a sense of connection and commiseration that I hold incredibly dear.

Thank you. <3 More...

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.



More...

Sex and Pain

So, here it is. The obligatory sex post. Every blog has its moment, whether it's a watery allusion to making love or an ode to kink, at some point every blogger has to consider what sex means, in the context of their lives and blog. Not everyone actually writes about it, of course, but I like to think everyone wants to.

My boyfriend and I don't have as much sex as I'd like. My chronic migraines and probable interstitial cystitis (IC) and his long-term, chronic, serious back pain don't lend themselves to the sexytimes. We cuddle. We hold hands in bed. We talk about everything, say I love you, hug and kiss freely, and I would consider our intimacy to be better than it's ever been. But, when we have sex, our combined pain and disabilities can make it awkward or frustrating and sometimes one of us has to stop and cry because something has gone painfully wrong. But we continue to try anyway because when it works, it's still pretty fantastic.

The benefits of sex are fairly obvious to most of us in pain, some really nice endorphins start pumping (heh), which lessen pain and improve mood. Then, there's the distraction element of physical intimacy; concentrating on feeling pleasure, and other sensations in general, can dull or even obliterate pain, at least temporarily.

But, the risk for both of us is high. If he angers his back, he could be flat for a week, or worse, he could require surgery again. If I anger my head, I could be flat for a week, and if I wake up the monster that is IC, it might trigger a fiery flare that could last months.

Still, I would like more sex. Everything hurts my head anyway, so why not have a trigger that's awesome? As for the IC, if I'm very, very careful during sex and don't EVER eat or drink anything caffeinated, acidic or high in refined sugars, I'll be fine! Probably!

My boyfriend, though, his back is a bigger issue. We can get creative with pillows and positions, but it's a huge risk for him every time. Degenerative back issues run in his family, so there's no easy fix here.

It's funny that I used to think sex was all about passion, fire, lust and spontaneity. Now, it's more a matter of patience, caution and calculated risk-taking.

Still hot, though.

More...