A quote regarding the glorification of pain

I have no patience these days with the Nietzschean cliché, “That which does not kill us makes us stronger.” I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is.

All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes.
- Dana Jennings, Source

Bad Benches

I'm looking at these benches...

And I have to say, the slanted one? Pisses me off. The Nike "wet paint" ones are also dickish, but at least they're usable.

For those who don't want to click the link, basically a gym company advertised by putting these benches in public places. The benches were designed so that the seat was tilted so far forward that no one could actually sit on them, the implication being that you shouldn't be sitting down, you should be omg exercising.

The Nike benches had fake wet paint stickers on them to "promote running"...basically to remind us all that we shouldn't be wasting precious exercise time sitting down and relaxing.

Another advertiser placed decals of bathroom scales so that when someone sat on the bench, their feet would be right on the scale. The decals said, "Burn Calories" and were advertising a gym in India. Oh, and the scale's dial registered a horrifyingly OMGFAAAAAAAAAAAAT weight of 95 pounds. You know, if I'm tired and need to sit down for a moment? I don't need eating disorder triggers shoved up my ass for the horrible crime of sitting down.

The latter two suck, but the first one is a kick in the teeth to those of us who have disabilities. If I'm out walking somewhere, and I have a real, sudden need to sit down for a little bit (often my back will be spasming, which is excruciating), encountering one of these useless, mean-spirited benches would probably make me dissolve into tears of pain and frustration. And then I'd probably have to sit down on the ground...which may be muddy or wet, and is not as easy to get up from as a working bench.

I am so damn tired of the neverending "Burn more calories" propaganda. We are cajoled and coerced into engaging in more and more strenuous physical activity, and guilt tripped if we do not. The gym companies barely even need to do their work in this anymore, because they've now got plenty of exercise zealots who LOVE showing off how morally superior they are to people who choose to spend their free time doing other things, or to those of us whose bodies are not able to engage in strenuous exercise.

The marketing weenie responsible for the slanted bench? I'd love to see that jerk get a badly sprained ankle, or come down with mono, and then be forced to replace all his furniture with slanted crap so he can't sit down or even sleep in his bed.

The Invisible Crutch

The Invisible Knapsack of White Privilege, conceived by Peggy McIntosh, discusses the many things a white person takes for granted, in list form. As a white person, many of these things were uncomfortable to read, but I also saw reflected in them the things that men, wealthy people, and non-disabled people take for granted.

I've decided to build an invisible crutch from things that constitute abled privilege, without repeating too much of what is in McIntosh's list (so read her list, and substitute "disability" for "color" for many of those things).

1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.

2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.

3. I can easily find housing that is accessible to me, with no barriers to my mobility.

4. I can go shopping alone most of the time and be able to reach and obtain all of the items without assistance, know that cashiers will notice I am there, and can easily see and use the credit card machines.

5. I can turn on the television and see people of my ability level widely and accurately represented.

6. I can be pretty sure of my voice being heard in a group where I am the only person of my ability level represented--and they will make eye contact with me.

7. I can advocate for my children in their schools without my ability level being blamed for my children's performance or behavior.

8. I can do well in a challenging situation without being told what an inspiration I am.

9. If I ask to speak to someone "in charge", I can be relatively assured that the person will make eye contact with me and not treat me like I am stupid.

10. I can belong to an organization and not feel that others resent my membership because of my ability level.

11. I do not have to fear being preyed upon because of my ability level.

12. I can be reasonably assured that I won't be late for meetings due to mobility barriers.

13. I can use most cosmetics and personal care products without worrying that they will cause a painful or dangerous reaction.

14. I can usually go about in public without other people's personal care products causing me painful or dangerous reactions.

15. My neighborhood allows me to move about on sidewalks, into stores, and into friends' homes without difficulty.

16. People do not tell me that my ability level means I should not have children.

17. I can be reasonably sure that I will be able to make it to a regular job every day.

18. I know that my income can increase based on my performance, and I can seek new and better employment if I choose; I do not have to face a court battle to get an increase in my income.

19. My daily routine does not have to be carefully planned to accommodate medication or therapy schedules.

20. I can share my life with an animal companion without my ability to care for them being called into question due to my financial and ability situations.

21. If I am not feeling well, and decide to stay in bed, I will likely be believed and not told that I am lazy and worthless.

I am sure there are more that I haven't thought of. Do keep in mind that I've tried NOT to copy Ms. McIntosh's work, because there's no need--most of what she says definitely applies to this list as well.

Fibromyalgia is usually associated with "tender points", which are specific areas around the body that respond with an inordinate amount of pain when pressure is applied to them. Researchers are beginning to accept that these are not necessarily a good diagnostic criterion, and that the tender points appear to be areas that are particularly sensitive for all people; they are just more so for people with fibromyalgia, who experience a greater level of pain with less pressure than people without the condition.

Even so, since I started to become ill, my upper arms have become so tender that I can hardly bear to even have someone brush against them--and if more pressure than that is applied to them, it is agonizing beyond description. Blood pressure cuffs are torture devices to me, and tourniquets used for blood draws are even worse. I've had people playfully punch my arm, and then get indignant when I start to cry because it hurt so badly. "I didn't hit you THAT hard!" Most don't believe me when I explain that my arms are insanely sensitive, but they do tend to refrain from repeating the gesture when I explain that the pain is probably similar to getting hit in the testicles, and that, if they do it again to me, I'll be happy to demonstrate to them how badly it hurt me.

The arm-punching scenario happened often enough that I now have panic attacks sometimes if someone looks like they are going to touch my upper arm. Usually I move out of their reach, cross my arms, and place a hand on each upper arm for protection, then explain to them why I reacted that way. I've gotten pretty good at anticipating people, so I haven't been hurt in a while by a person, thank goodness.

But the rest of the world isn't foam padded. I'm sure my blood pressure readings (which are usually very good) are higher than what my normal state would be because of the pain, and the anticipation of the pain. Short sleeves with elastic gathers are abhorrent to me. Sometimes ANY fabric touching my arms is intolerable (I wear a lot of sleeveless shirts). I sometimes bump into objects or get jostled in a crowd. There are many days when they hurt and throb even if nothing at all is touching them. It feels like the whole surface of my upper arms are very nasty, very fresh bruises all the time. And when something DOES apply pressure to them, the pain lingers for a short period once the stimulus is gone.

I don't know what mechanism of my illness causes this excruciating arm pain. If I did, maybe I'd have some idea of how to lessen or even eliminate it. This is just one small aspect of the myriad symptoms I deal with on a daily basis, and I thought that elucidating upon this one aspect might give others some insight on just how difficult it can be to face this in addition to the crushing fatigue, widespread body pain, sensitivity to aural and visual stimuli, and all the other things that my brain fog keeps me from enumerating. Not all of them can be managed or reduced with treatment or drugs, and just being alive and conscious is a painful chore some days.

Just a quick one today

Telling someone with fibromyalgia that "everyone has aches and pains" is like telling a hemophiliac "everyone bleeds when they get a cut".

A day in the life

Today, I had a booking for my small business. I awoke with my alarm, and took a pain pill, resetting my alarm for half an hour later, so I could get up once the pain medicine kicked in. Without it, I have a hard time getting up even to use the restroom, and I usually hold it as long as I can just to avoid the pain of getting up and going.

Half an hour after the first alarm, the second one goes off. I can get up now; it still hurts, but not as much. I pull the clothing I want out of my closet and dresser, but don't put them on right away; clothes are actually painful to me, and I'd rather get some other things done first (I bathe/shower at night, so that my hair will be dry by morning). Using hypoallergenic cosmetics, I put my face in order so I no longer look like a painting from Picasso's Blue Period. I pull on part of my clothing, and go downstairs to pack the rolling rubbermaid bin I need for my gig.

Using a written list, I make sure I haven't forgotten anything important; I've done this many times, but I still need to make sure the brain fog doesn't make me omit a key part of my repertoire. The bending and lifting I have to do for this is causing my lower back to protest, but I keep moving, grabbing a small bit of food on the way out.

I have to load the bin into my car, which I can do--I'm strong--but it hurts. My lower back feels like a knife has twisted in it, and it continues broadcasting pain signals even after I've settled into the driver's seat. Driving is a particular nuisance; the use of my body in this way often gives me leg cramps, a spasming back, neck pain, and a headache. Fortunately, my drive today is less than five minutes, and I arrive at my destination no worse for the drive, for once.

I haul the bin out of the car, along with a couple of bags that had been on the front seat. I try to pick up the bin's handle, but my purse is on that shoulder, and it slides down. Stupidly, I slide my purse back up and try to pick up the handle again, repeating this three or four times before my logic circuits burn through the brain fog and tell me to put the purse on the OTHER shoulder.

Once at my gig, I set up quickly, then use my spare time to read the novel I'd brought along. The time comes, and I perform well, as usual. This is the easy part for me; it comes naturally and easily. After I'm done, I receive applause, and many audience members come up afterwards to personally thank me, and to tell me how much they enjoyed it. I accept their compliments graciously, and then thank them for being there.

I leave some literature with the person who organizes events for that client, then pack up and haul the bin back out to my car. It feels heavier than it was before, even though it's technically lost some mass. My back can't take much more than this, and when I get home, I feel my abdominal muscles giving way this time as I lift the bin back up to the porch. I'm still not done, though; I have to get its contents put away--it's not a task that can be left until later. More bending, kneeling, lifting, and it's done. And so am I.

How are you? Don't ask!

My aunt, who is only two years older than I am, has been undergoing chemotherapy and radiation treatments for an inoperable brain tumor. The treatments are not going to be life-saving; they will, however, lengthen her remaining time and stave off the loss of function for a while. Of course, the treatment has the expected side effects of feeling really sick, hair loss, etcetera.

When the family was informed of her diagnosis, I made the decision to start writing her letters--real, handwritten letters, sent through the mail, which to me are so much more personal and dear than email. I wanted to make sure I said all the things that I wanted to say, but, more importantly, I wanted to give her something to enjoy and look forward to. She knows that I know she's ill, and that she's suffering, and all that, so I ignored those topics altogether, instead focusing in my first few letters on the things I admired about her.

After I had gotten the "have to say this" stuff out of my system, I then focused my writings on good things that were happening here in my world. We both love animals, so I wrote about my foster cats, my own cats, my reptiles, and some of the volunteer work I was doing. I wrote about my garden as spring arrived. I told silly stories about my husband and roommate. I shared experiences with favorite restaurants and recipes, talked about art museum visits, and whatever else was going on that was positive. I made sure to tell her that I was perfectly okay with her not responding, that I figured she would want to spend the bulk of her energy on enjoying her family.

At some point, my mother had a chance to talk to her at a family gathering, and she told my mother that she was really enjoying my letters, especially because they focused on the positive things. So I kept writing, and at some point, I called her to answer a question she'd had about a bird. She commented on how irritating it was that people kept asking her how she was feeling. I told her I absolutely understood--that even though my condition is not as serious as hers, it still makes me feel like crap all the time, and so I never know whether to answer the question, "How are you feeling?" with honesty or not. I'd rather not talk about how I'm feeling, because it's always bad, and if you are always answering honestly in that way, people start to get annoyed with me for never feeling good.

So what should you say to a person who is ill, in lieu of "How are you feeling"? Train yourself to ask a different question. Ask if they've seen any good movies lately, read any good books, that kind of thing. Whatever common ground you've had with them before? Now's the time to draw upon it and talk about those topics. And, if the person is actually wanting to discuss their illness, let them guide you to that topic. I know that I sometimes do want to talk about mine, if only to share experiences that might be helpful to others, or when I need a little support, but a most of the time, if I have the energy for socializing, I'd just rather focus on other things, and I'm grateful to folks who allow me to do that.

Scentsible and considerate

Imagine, for a moment, that you live with a semi-deaf roommate. This roommate really enjoys music, but has a hard time hearing it, so he cranks up the volume to a level that is comfortable and enjoyable for him.

You, as a person who is not hard of hearing, have a much lower threshold for what is comfortable and enjoyable. Roommate is rocking out while you are rolling on the floor, clutching your head in agony. The sensory overload is causing you real pain. When you ask if the roommate can turn it down, he looks at you incredulously. "It's not THAT loud, hell, I can barely hear it!" You try to explain that, because his hearing isn't as acute as yours, your volume tolerances are different. He scoffs at this, telling you that you're making it up, and to stop being such a sensitive goddamn pussy, and to stop trying to control him with your stupid hypochondriac bullshit. He then turns it up even louder, flips you the bird, and subsequently refuses to ever turn the stereo off at all, just to spite you.

That, my friends, is what it is like to have a very sensitive sense of smell in a world where everyone and their dog is slathering on several layers of perfumed products.

Maybe you don't smell it quite as acutely. Maybe you think we're making this up. But when someone is trailing their cologne behind them like Princess Diana's bridal train, for some of us with sharp noses, it's the equivalent of someone screaming in your ear at the top of their lungs. The sensory overload hurts. It gives us headaches, just like the aforementioned roommate's music would give most other people headaches. Just because you aren't able to smell things as well as we do, doesn't mean that we are imagining this.

The overload of our olfactory senses causes a reaction--our sinuses fill, our noses run, our eyes water. This is a neurological reaction that is designed to reduce the waves of sensory input entering our noses. In fact, there is a certain nerve, the trigeminal nerve, that, if aggravated, can actually cause the nostril on the afflicted nerve's side of the face to run, the eye to water, and the sinuses--just on that side--to fill (this can be trigeminal neuralgia, or a cluster headache)--just from a nerve going haywire!

So, yes, when we get too much olfactory input, there is a PHYSICAL reaction, just like when your pupils constrict and your eyes hurt if you are in light that is too bright. If we are in a place that we cannot leave, such as our own homes, or a workplace, we are subject to pain and discomfort that cannot be mitigated. This is why many of us are sensitive to perfumes, and why we ask that others be more subtle with their scents. We're not trying to be mean to you, or to control you, we are trying to save ourselves from terrible headaches. Why is that too much to ask?

Open Letter To Those New To The World of Chronic Pain

Dear New Chronic Pain Sufferers,
Welcome to the world of chronic pain, a dark place where you may or may not get a definitive diagnosis or find treatment that helps.

I want you to know, first of all, that you are not alone. There are lots of us out there who have gone before you into this realm, who have been in it for years, and who have done our best to pave the way to make it easier for you. As you may be discovering, we have not made as much headway as we'd like. This is a difficult road, one where we have only just begun to be taken seriously, to have research done, and to have some therapies that work for some of us.

We still have a lot of lousy doctors out there who are either not well-educated, or not compassionate. Most of us have been through several doctors, usually around 7 or 8, before finding one that is willing and able to help us. You may have to do the same thing, and while that is a huge pain in the butt, it is not worth your time to continue seeing someone who treats you poorly, doesn't take you seriously, or doesn't know what the hell s/he is doing. If your doctor is unable to help, and unwilling to learn more about your condition, then find a new one. If that one fails you, move on to the next one. Remember, you are not there to be a good, passive little patient. You have to advocate for yourself, and if the doctor expects you to just suck it up and do what s/he says? S/he does not deserve your time or money.

There's also an immense amount of quackery out there. Look out for doctors who promote snake oil or weird therapies. Especially look out for claims of a "cure"--that's the clearest indicator of bullshit. Guaifenesin, for example, works no better than placebo, yet there's a doctor out there making tons of money off of fibromyalgia patients with his quacky book that claims to cure the condition with guaifenesin. Look out for vitamin pushers; a multivitamin isn't a bad thing to take, but don't throw your money away on one that claims to be designed for your condition. Avoid magnetic products; they are quackery as well. Your best bet is to find a good online forum and communicate with other sufferers. Most veterans can tell you what works and what doesn't, which is very helpful in a realm where hucksters prey upon our desperation to make the pain stop.

Also know that everyone has a different set of symptoms, and different therapies work for some, but not others. It's important to have a lot of tests done, including Vitamin D levels, thyroid panel (full panel, not just TSH), Lupus and Rheumatoid Arthritis screening, and things like that. Rule out everything you can, and treat what you test positive for. Some people find that their pain is caused by celiac disease, and is helped by going gluten free. We all have to go through periods of trial and error to see what works and what doesn't. For example, many people get relief from Ultram, but it does absolutely nothing for me. I get relief from opiate pain medication, but that doesn't work for everyone. It takes a lot of time and effort to find the right diagnoses and therapies. You also will have to advocate for yourself a LOT, asking the doctor to let you try this or that, and if they refuse to listen, time to fire them and find someone who wants to help you.

Your family and friends are probably going to treat you badly over this. They may accuse you of being lazy, tell you that you just need to lose weight (chronic pain afflicts people of all body types), to suck it up, or that you're imagining it. They'll offer tons of unsolicited advice, and probably even get mad at you for not paying $100/month for a random herb that they read about in Reader's Digest. You do not deserve to be treated this way, and you do NOT have to apologize for your pain. You might just have to let go of some people, if they cannot get over your life change. You don't have to yell at them, but feel free to tell them that you are dealing with your condition, and it is between you and your doctor what therapies you try. If they can't handle that, then do your best to ignore them when they are behaving badly.

Finally, don't give up. Your pain is real. There is research showing the biochemical differences between us and normal people, and more going on even now. Therapies are being developed and improved every day. Keep a journal, either online or paper, and make it private. Write about your pain, your experiences, and what works for you. The information may help you or someone else someday. Network online with other people and share your experiences in communities; you will learn valuable stuff this way. Find a source of comfort, be it a spouse, friend, support group, cat, or dog; you need someone to hug you and be hugged by you. Finally, remember that you are not a bad person, and you don't deserve this. It's just a bad thing that happened to you, and, while it seriously sucks, there are more of us out here to help you find your way.

Welcome to chronic pain.

Love,
Rio

Fibromyalgia and the variability of its sufferers

From my Livejournal friend Liz (ma_petite7263):

Something got me started thinking about pain and illness and how individuals deal with it in their own lives.

Some people are able to move past it, live with the pain and not let it affect them at all. It doesn't change their lives. They don't have to give up anything or struggle.

Some people have to make small changes.

Some people have to make big changes.

Some people are completely disabled by it.

Regardless of where any of us lie on the continuum, none of us should be treated as if we all fall in the first category. We'd all like to be there, but a lot of us aren't, and we should be made to feel like lesser beings just because we have to make adjustments.

I think this goes hand-in-hand with the concept of invisible disabilities. Because we have no outward signs of being ill, others automatically assume we're making it up. Then they lump us together and say that "So-and-so does just fine with illness X" or "Whosmadoodle bathes in the blood of infant platypi and now they're doing great!" as if we're all the same person, with the same illness, with the same symptoms, with the same abilities and pain thresholds and mental states.

What people don't seem to understand is that we're all different. A lot of us with chronic illnesses also suffer from mental illness, primarily depression. You'd be depressed, too, if you woke up in pain everyday or felt like your body was just giving out on you. You'd be depressed, too, if you knew there was no cure, and the things you can do to alleviate symptoms don't work for everyone. You may be one of the unlucky few that is on an eternal fruitless search for relief.

I know there are people out there who have more debilitating diseases like MS and lupus, or spina bifida, or had to have a tumor removed from their brain. More power to them if they've been able to take it in stride and not let it affect them. But just because they can do it doesn't mean we all can.

The ones who seem to hold this belief the firmest are those who haven't been afflicted. The perfectly healthy can blather on as much as they'd like but it comes down to the fact that they have no clue what they're saying.

Liz captured something that's been rattling around in my subconscious very eloquently. Many of us who are chronically ill are beset by people who "know someone who got better after they did x", and we get treated like recalcitrant children for stubbornly refusing to magically get better just because our problems are inconvenient for others.

I know that it's probably frustrating to view a fibromyalgia sufferer from the outside. Here's this person who looks okay, and they can't be plugged into a machine that will give a precise measure of illness, yet they are always saying they are in pain, and that they are tired. To some, it might appear to be an excuse to slack off, to be lazy.

Let me tell you something: Nothing could be further from the truth. I would love nothing more than to be working sixty hour weeks, keeping my house really clean, and being able to have a normal social life. Why am I not getting better? Because medical science hasn't found a cure for this. No one knows how to fix it--and we're just barely learning how to manage the symptoms decently. Some people are lucky and found a simple solution, but the rest of us are waiting for science to catch up with our suffering. We've only recently even been able to find medical professionals to take us seriously enough to give us decent quality of life; many of Dr. Kevorkian's clients were fibromyalgia sufferers.

So, look, maybe it's not convenient for you to have a friend or family member with this condition, but something that pushes many of its sufferers to commit suicide rather than continue a life of relentless pain and fatigue? Not something we chose, wanted, or enjoy. If you think it's so awful to deal with us, just be glad you aren't one of us instead.

Migraine, Migraine, go away

I've spent the past few days on a migraine rollercoaster. The first one hit me on Tuesday evening. I took an Imitrex, which helped, but I felt fragile all of Wednesday, and Thursday, it blossomed into bright, agonizing pain again. I don't get the usual migraines; I get cluster headaches, which are worse (I've experienced both).

Thursday, my beautiful husband picked up some Imitrex samples from my doctor. I discovered that the samples are 100mg, while my prescription was for 25mg. The 100mg helped, and I basically melted into the bed, a puddle of "huh?" when spoken to. I didn't dare move. I slipped into sleep, and I apparently needed some major healing, because my body slept for a very long time while an electrical storm raged in my brain. I had bizarre dreams and several periods of waking with sleep paralysis still in place (I hate that SO much).

If I had health insurance, I'd probably ask for my brain to be scanned or something.

I awoke around 2pm today, still a bit fragile, but much, much better. I think that, if I'd had the higher dose on Tuesday, I would have nipped this thing in the bud. As it is, I had a great deal of myofascial pain while the storm raged.

Let me describe myofascial pain: I felt like I had a network of very fragile, brittle material, like blown glass, or ice, just beneath my skin, all over my body, limbs, and head. The material felt like it cracked and crunched when I moved certain parts, especially the helmet of it over my head. There is no actual material, just nerves giving bizarre and incorrect feedback to my brain.

So I had a really miserable time for one of my favorite holidays--I adore Valentine's Day. My sweet, wonderful husband was so kind to me--he brought me cupcakes from the bakery near his work, which has the very best cakes and frosting in the area (Cinnamon Stick in Clifton Park Center--trust me on this one, you'll never get a birthday cake anywhere else!). He also framed a small print of "The Ravishment of Psyche" by Bouguereau, one of my favorite paintings. I was delighted! I had managed to make him some homemade batter-dipped mozzarella sticks, which he and my roommate enjoyed very much. I was planning on making him a wonderful dinner, then having dessert (I got him some key lime pie) in the bedroom. That was ruined, and I feel really ripped off. Screw you, trigeminal nerve. Screw you, myofascial pain.

I hope others were able to enjoy Valentine's Day. I wouldn't wish my experience on anyone else!

Brief update

I haven't abandoned y'all; I have just not been feeling great. Fibro fog and pain have my sleep schedule flipped, and my wellspring of inspiration is running dry because of the mental static.

Yesterday, I found myself in full-body agony, and I was so discombobulated by it that I actually forgot to take pain medication for it. I finally remembered when the spouse and I were already on our way to our friends' house, which made for an interesting evening.

Once we got home, I managed to remember the pill, and soaked in a hot bath. What I discovered was that the main source of my agony was my right leg and lower back; they hurting so badly that they just radiated waves of pain through my entire being. Once I'd fought back a little, and figured out the source, I was able to have my husband massage out some of it. I occasionally get a cramp that extends from big toe to coccyx, and it thwacks the hip, knee, and ankle on its way up and down. I often ask to be shot while enduring one of these. Putting on a light compression stocking does help (18-20 mmHg), but time is generally the only thing that fixes it completely.

So that's what I've been up to. I also have a new foster kitten, but he will be in a whole new post about him!

Thank you

Thank you to everyone who expressed their sympathy on the loss of our kitty. We aren't doing great; there's a huge cat-shaped hole in our hearts, and our family has to continue without her, no matter how much it hurts. It's difficult to face, and it's painful to even think of her in the past tense, let alone speak of her in that way.

She was really cool. When Dom would harass Morgan, usually-sedentary Teya would go over and kick his butt. When she was younger, she learned how to flush the toilet, and would stand on the sink, paw holding the lever down, so she could watch the water swirl around. Brian thought something was wrong with his toilet, because he kept hearing it flush, and caught her in the act one day.

She was absolutely devoted to Brian; it took her a long time to warm up to me when I moved in, because she wasn't a fan of non-Brian people. But I spoiled her with lots of grooming, and she eventually decided that I was tolerable. I brushed and combed her, because she had difficulty grooming herself, and I occasionally bathed her, which she grew to enjoy because the warm water felt good, and being clean felt good too. One pass with the brush or comb, and I had instant purr.

She also loved ear rubs, and the last day she was with us, she didn't want to purr until I gently rubbed her ears. I'm glad I knew her ways well enough to bring her that little comfort. She got plenty of hugs and kisses before she left us.

I suppose time will make it less painful, but I don't want memories to fade. I want to keep her here, in my mind and heart.

Again, thank you all for your kindness.

Rituals of loss

She's gone, on the couch, covered in a cream-colored towel. My favorite towel, soft and thick. Our kitty, his kitty first; our beautiful black cat named Teya, who was only nine years young. Too soon.

Brian's outside, digging her resting place, a spot against the house, by the kitchen; she'll be as close to us as possible.

I awoke around 3:15am, after having slept several hours. I had encouraged Brian to spend the night on the couch with her. She had looked not too bad when we brought her home; a little shaky, but perked up, and she was willing to eat.

I'm moving around the house, searching for the right container. A cardboard box will not do. I find a piece of upholstery fabric from the couch, her favorite place to hang out, and I tuck it under my arm, along with some black felt.

He's running hot water to melt the ground. The stump from a catalpa sapling is in the middle of where he's digging, and it's being stubborn. We'd had to cut it down; it was not thriving, and ants were making it worse. It's too bad; I love catalpa trees.

I came downstairs after waking up and asked how she was. Brian said she'd moaned a lot throughout the night. I sat at my desk so I could drink some water and take a Vicodin. I wish she could have had something like it; I knew she was in pain.

I glide down to the basement, my long skirt swirling around my bare feet. I'd been looking for a certain box, but my eyes settled on another one--a better one. A wicker box that I've had for nine years, with a brass clasp. It's big enough that she won't be cramped, but not too big. The box goes upstairs with me.

He's digging away at the stump. I go outside to check on him, and we come up with the idea to use the kitchen sprayer to get hot water onto the frozen ground instead of trekking buckets in and out. He helps me pop out the screen, and we give that a try. It works.

I sat with her, and I tried gently to give her the medicine, but she's not having it. There was something about the way she's clenching her jaw that just seemed wrong. She'd been sleeping, and I had awakened her. We stroked her and held her feet, her head, her ears. I cried, while Brian just touched her. She started to cry out in deep howls that seem to take every effort, and her breathing was labored, so I called the vet's emergency number. We were instructed to take her to the emergency clinic in Latham, so I gave them a call.

I'm taking time out to sob uncontrollably. We're out of facial tissue, so I'm having to use paper towels. Tip: Bounty paper towels are less scratchy than toilet paper.

He's still digging. It's cold and sleeting a bit. It's 5:30 in the morning.

I threw on some clothing; a favorite skirt, and a sweater over my chemise. I brought him a shirt when I came down. He got his shoes on, and he was getting some things together. I looked at her, and I called him into the room. I told him to turn on the light, which he did. I told him to sit down on the other side of her. He looked at me, and sat down. Her breath was coming in gasps, and she'd stopped crying out. I took hold of her paw, her beautiful front paw, with the wrist shaved from her IV the night before.

I line the wicker basket with wax paper, then with the black felt. I tuck a red towel in, then scoop her up and gently settle her into the basket. It's tearing me to shreds. I fold the ends of the towel over her, then close the lid without latching it.

He's nearly done. He scoops the water out of the hole and pours it downhill a bit. I go outside to check on him, and ask him to come in and see.

We had our hands on her, and we told her we loved her, and that we were sorry, so sorry. I cried and cried. She stopped breathing, and had a couple of convulsions. Her pupils became dilated. We tried to close her eyes, without much success. We stroked her for a while after that, not ready to let go. Never ready.

We open the box, and stroke her fur for the last time, saying goodbye. I'm nearly throwing up with grief. He's so stoic, so strong, and I'm a wreck. I tuck in a packet of food, and he puts a couple pieces of bread in the container. Bread is her favorite thing to steal. I also tuck in a towel anointed with violet oil. The lid closes, and is latched.

We went outside with the box and lowered it into the grave. Brian removed it, wanting to dig just a little deeper. While he shoveled, I went inside to get the bulbs I'd procrastinated about planting. When he was satisfied with the depth, he had to climb in to place the box on the bottom. He refilled the hole slowly, and when he was nearly done, I sprinkled the bulbs over the disrupted soil. He put a layer of soil over them, and I went inside and returned with a partial bag of cypress mulch, which we spread over the ground.

We came inside; I made tea to warm us, and I sent him off to shower. If I was cold, I didn't feel it. If I was hurting physically, I wasn't aware. And I did the only thing I know to soothe my soul: I sat down and began to write. And now, I'm done.

How I came upon the fibromyalgia diagnosis

So, my path to getting diagnosed as having fibromyalgia was kind of strange. I'm going to talk about it.

I'd been having bad back and neck pain for a long time. My breast reduction didn't make it significantly better, and physical therapy didn't do anything. I spent a lot of money I didn't have on PT before we finally agreed to stop throwing good money after bad.

After my surgery in '04, where I had an ovary, fallopian tube, and part of the uterus removed because they were encased in cysts, and the ovary was being torsed (twisted), causing intense, horrific pain, I started feeling achy all over. It wasn't just my joints, as previously (I have some arthritic joints), but it was in my muscles, with lots of fabulous headaches.

One day, I had severe abdominal pain that was as bad as my agony from the ovary incident, and almost as bad as the gallbladder one. Having required emergency surgery in both cases, I had Brian take me to the hospital, where I got tests and pain medicine. They pumped me full of Demerol and phenergan, which eased my agony. I drifted while the tests were done and analyzed. The doctor came back saying that they couldn't find anything wrong except for some scarring on the lungs, which he said could be from rheumatoid arthritis. I was sent home with a pain medication scrip and told to see my doctor.

My doctor put me on a round of prednisone to help with the lung, which he said was "partially collapsed". We talked about the pain, and he had a bunch of x-rays ordered and some blood tests. He finally concluded that I had fibromyalgia, since everything fit the symptoms. I got pain medication for the days when things were bad, and he put me on Cymbalta to help with pain and anxiety.

I resisted this diagnosis because, having known several people with fibro, I didn't want my life to change. I was working on becoming a field biologist, and if the pain I was experiencing continued, it would prevent me from doing that. I was already too tired and pained to do a lot of it. Eventually, though, I accepted the diagnosis, and conceded a few things.

The pain that sent me to the ER? I now recognize that as a bad muscle spasm. I get them from time to time, where they start in the back, and before long, I feel like something is stabbing me in the gut. Now that I know it's in the muscles, I can do some stretches and take a pain pill. Once the pain pill kicks in, the muscles slow down their tightening because it's the pain that makes them get worse and worse. Once it gets bad, it's really hard to tell it's a muscle pain, because it refers pain all around.

It wasn't until I got a different doctor that I finally got a thyroid problem diagnosed, and I'm still in the process of increasing the dose of Levoxyl to the right level. Apparently, with fibro, the TSH test doesn't always work because there's a feedback loop (or something like that) which prevents the TSH levels from getting high.

And so, here I am.

Oh shut UP already

I am so tired of these whiny assholes complaining that, "I saw a fat person in an electric wheelchair, and that is no fair, they should walk!"

Okay you morons, look:
- It is possible to be disabled AND fat

- No, being fat isn't a disability, you're right. Therefore, they must have some type of disability that isn't being fat. Sometimes, you can't see disabilities. If you weren't stupid, you'd know that.

- Yes, there are fat people in the world. Some of them go out in public. Some of the disabled ones go out in public, too. You don't want to look at them? Too bad; everyone has a right to be in public as long as they are a law-abiding citizen.

- Maybe we don't like to look at you, either, but we're not suggesting that you never go out in public.

- The medical conditions of other people are none of your business.

- The body size of other people is also none of your business.

- If you're that jealous about not being able to ride in the wheelchair, come over and I'll break your legs for you, okay? Or, hey, no one's stopping you from hopping into one at the grocery store. They don't make you show your medical records or anything.

- Walking around a store instead of riding in a scooter will not make a fat person thin. Parking at the back of a parking lot will also not make a fat person thin.

- Both of those things MAY, however, prevent that person from being able to go out in public and do their errands. And that's what this is really about, isn't it? You want the disabled fat to shut themselves in, never to be seen. It upsets you that they even exist.

- Too bad. We are here, and some of us will try to live as normal a life as possible, even when we are in pain, exhausted, bloated by our meds, or dizzy. That might mean we'll use mobility aids. Grow the fuck up and get over it.

Let's talk about sex

Mom, for gods' sake, please don't read this. You will die of embarrassment, and so will I. :P

In my last entry, I wrote:

Last night, I cuddled close to my lovely husband, enjoying his presence. I love to hear him breathing, hear his heart beating, smell his unique scent, and feel his smooth skin and soft hair under my fingers, lips, and cheeks. I nuzzle his neck, arms, hair, and back while touching his hips, legs, and torso with my fingertips. He is warm, cuddly, and does not pull away from me when I press myself against him. He permits me to touch him anywhere, everywhere, anytime; he is completely open to me all of the time, completely mine all of the time. He does not deny me a kiss or a touch, a hug or a smile. We have sex often, without restrictions or conditions attached, in many ways, with both of us enjoying it, neither submitting joylessly to the other.

In that entry, I talked about the joy of not having to sleep alone. Now, I want to talk about sex.

I like sex. Even though idiotic jackasses of long ago tried to say that women aren't capable of sexual fantasy, and they tried to deny our enjoyment of it, I am yet another woman that has the gall to enjoy sex. I know, I know, I should be shot, right?

As long as I can remember, I have been bombarded with the message that sex is a commodity, something that women engage in because they want something in return, not because they like it. Men are little more than animals that will give just about anything for sex, while women hold it in front of them like a carrot on a stick. Sex is to be used to manipulate, to bargain, and to acquire, but it is not to be enjoyed in and of itself if you're a woman. It's a distasteful, miserable act, barely tolerable, but if you want your husband to give you money or let you go out with the girls, you have to grit your teeth and spread your legs.

Then, at an age I will not specify, I found that my body did actually want that dirty stuff! I liked it, and I was appalled that someone would lead another person on, leaving them frustrated, just to manipulate them into something. My first marriage was a disaster, and a huge part of that was my former spouse's icy libido. Since I had grown up with the idea that the man always wants it, and the woman is always denying it, I somehow had the idea that my being a woman who wanted it all the time was a desirable thing. Not so, with the first spouse; we were a complete role-reversal of the sexual stereotypes. I felt betrayed, ugly, and, of course, extremely frustrated. There are only so many times a sex toy is sufficient; I needed a man's warm body pressing against mine; I needed kisses, I needed hugs, I needed to be held and stroked. In other words, I needed someone else.

I suppose that relationship, despite the anguish it put me through, prepared me to appreciate those very basic things. I probably drive him nuts sometimes, but I marvel at being touched, kissed, and admired. I feel a sense of wonder when I touch him, a joy and relief at finding someone who is unconditionally in love with me. I don't think that I will ever be able to take these things for granted because I know what it is like to be in a relationship without them, to beg, plead, and cry to have them and be denied. To have to ask permission (and often be denied) to kiss or be kissed, to touch or be touched. I hope I never again have to live that way, but as long as Brian and I both live, I won't.

Fine, I'll talk about it.

Please note: If you are related to me, you might be upset by this entry. If it's going to piss you off, I'd rather you just not read it.

I was hesitant about writing this in my blog, because of a certain segment of the audience. I've decided, though, that: 1. I am 33 years old, and am not dependent on people who would be upset by this, and 2. I really have nothing to be ashamed of, even though other people may feel differently. So, I'm going to tell this story, and if it's upsetting or shocking, that's not my problem. It's been my problem for over 20 years now, and it's about time I lay the cards on the table.

Let me start by telling the later part of this story, because it reveals just how I viewed my own value, and how young and foolish I was.

I had a friend, I'll call this friend M (not his true initial), who was fairly interesting, and who had experienced a rough life. M actually dated my friend Michelle for a period, but he and I were just friends. One day, I was going to meet M at the mall to see a movie. I think I was 16 at the time, maybe 15, not sure exactly. Anyway, M was broke (per usual), but I knew someone who lived nearby, so I suggested we walk over and see if I could borrow money from this person, F. Now, there was absolutely no reason for me to even want to see F's face, but at the time, I blamed myself for certain things because I really thought I was a worthless piece of crap. F politely chatted for a moment, told us he had nothing to loan, and we went on our way to just hang out and chat, since we couldn't see the movie. F, being a vindictive, spiteful asshole (I'll explain why in a moment), hatched a plan to have his mommy (who came home while we were chatting on F's doorstep--we did NOT enter the house) call my parents and tell them a lie. His mommy did not KNOW this was a lie, but that's neither here nor there. She called up and told my father that M and I had come over to F's house and asked if we could have sex in the house. Not only was I not interested in M in that way, but F's house is the LAST place I would want to do that in.

Didn't matter, though, I was grounded and made to feel like I was a disgusting, worthless whore. I don't remember much of what happened after, except that I was really just wishing I had the guts to hang myself, and I was able to have Monica call F's mother and tell her the real story, and have F's mother call my parents and retract the bullshit. That didn't matter either; my parents thought F's mother was lying or something THAT time, and I was still a dirty whore.

But wait, why would F do such a thing? What had I done to offend him so? Well, this is the part that's going to be a big bomb, because I've only told a few people about this--my past and present husbands, my long-ago significant other Dean, and a female friend that I'm not going to name.

F was pissed off because, even though he had been after me to do so since I was TWELVE YEARS OLD, I would not willingly have sex with him. He got what he wanted once, when I was young, terrified, and unwilling. People can crow all they want about, "If you really don't want it, you'll fight and scream," but unless you've been a frightened pre-teen who's faced with someone who's bigger, stronger, and doesn't accept no for an answer, you do not the fuck know what it is like. My warped little child's mind actually feared getting punished for being found in that situation more than what was going on, and feared being punished if I told anyone. After, I pretended it hadn't happened, and subjugated that experience as much as I could. How to explain that I didn't want F as a friend anymore? How to explain that I hated him? And, of course, F took my lack of acknowledgement of the event as my condoning it after the fact, despite protests before and during, and thereafter hounded me for a repeat, occasionally becoming angry and demanding at my continued refusal. I was careful not to put myself into a position where I was alone with F ever again.

Even so, I felt just as violated by the cruelty he inflicted later, and the irony of being punished for something I didn't do--because I wasn't WILLING to do the very thing I was being punished for, was just overwhelmingly painful and awful. I believed at that moment, and for a long time after, that there really is no justice in the world, and that everything in my life will turn to shit because I don't deserve to be happy or free. It is a primary reason that I live my life in a constant cringe, waiting for some bullshit thing to take away my freedom and happiness. (I also picked up the idea that, it doesn't matter what I do, I'm going to get punished for something whether or not I did it, so I might as well have the enjoyment of committing the crime._ I don't really know how to overcome it, but acknowledging the source is probably a good first step, along with constantly reminding myself that, now that I am an adult, and I am free to go where I please and associate with the people of my choosing, no one can sever me from my social life over some ridiculous, vengeful bullshit.

You can call me a dirty whore if you want, but I'm going to get in my car, go where I want, and spend time with friends. I don't have to hate myself, or think that I am worthless anymore. I can love myself unconditionally, even if I'm fat, disgusting, stupid, or a slut--and anyone who thinks those things of me is free to go and find someone less abhorrent to care about. I've got me, I've got my husband, and I have a lot of friends that know otherwise.

I'm fat and I wear Crocs. Deal with it.

You'd think this guy was just kidding, but he's not.

Apparently, Crocs are responsible for people being fat. This is because, according to some guy who makes his money off of "boot camps for brides before weddings", kids "clop along" in Crocs, or shuffle their feet. It makes me wonder if he's ever 1. seen kids walk, or 2. worn a pair of Crocs. I've seen plenty of kids shuffling as they move; hell, I did it, and I remember it being part of an attitude, not because of the shoes I was wearing. If I wanted to run, though, I bloody well ran until the asthma attack happened (before you ask, I was a THIN child and teen--asthma is a disease of the lungs, not the result of adipose tissue). When I was in high school, I was capable of dashing up or down two flights of stairs in high heels.

Now that I'm older, and I've been stricken with this stupid disease, I can't wear the heels anymore. I'm not doing a lot of running. But, I do wear Crocs. I've worn them on hikes, and I've run short distances in them without trouble. In fact, they're much easier for me to wear for those activities than other shoes, because they are light, ergonomic, and fit me very well. Wearing Crocs has pretty much eliminated all plantar fasciitis pain, enabling me to be more active than I otherwise could be. "Athletic" shoes have caused me nothing but foot pain throughout the years; I've spent a great deal of time and money trying out different brands, and while a couple brands were less painful than the rest, none have given me the freedom from pain that Crocs have.

Perhaps the big name athletic shoe companies are feeling a bite in their profits due to the success of Crocs. How about, instead of planting little fitness fascists (like the weenies in this article) to insinuate that shoes are making kids fat, they develop competitive, comfortable products that serve the needs of the customers they are losing? How about recognizing that people want to spend money on shoes that don't hurt their feet, don't fall apart within three months, and are simple to clean and care for? Sorry, large shoe companies, but I've thrown too much money away on your products, only to have them give me blisters, not provide enough shock absorption to prevent knee and ankle pain, and to be unsalvageable if I stepped in something disgusting. Learn from your losses instead of badmouthing your competitors.

Here's quote from Junkfood Science:

Crocs are certified by the U.S. Ergonomics Council and the American Podiatric Medical Association and they’re designed to help with certain foot and circulation problems. Will anti-obesity initiatives be coming after nurses, elderly, cashiers, gardeners, diabetics, and those with foot problems next?

Also, the article included a quote from some doctor:

"I have seen 9-year-olds with type 2 diabetes," Hassink said. "Obesity is an indicator. It tells us about our environment, about our culture. It is the canary in the mine."

What she's not mentioning is that this is most likely due to the fact that prepubescent kids have a natural and temporary insulin resistance that is associated with hormonal changes and growth. This is normal and natural, allowing them to have the energy stores needed for growth and puberty. Remember, puberty? When girls get curvy? Remember when it was okay for women to look like women instead of prepubescent boys? Anyway, this (again, temporary) period of insulin resistance in growing children (remember, too, they're supposed to do that--get bigger as they get older) can lead to overzealous practitioners to label the kid with type 2 diabetes. This would be due to the fact that, in the past, no one really bothered checking for it, so kids sailed through that period of development without anyone knowing a thing.

Now, of course, they put on some fat layers as part of puberty, and everyone PANICS! because OMG ADIPOSE TISSUE OMG OMG! So we had to start testing them to prove that it's a bad thing--and of course, a healthy 9 year old kid is just the right age to start testing as insulin-resistant. Instead of waiting it out to see if it's normal puberty changes, we now have to medicate the hell out of the kid, put them on a treadmill, and enforce a 200 calorie per day diet so they don't become socially unacceptable. Because it's healthy, you know.

I'm so old that I remember when kids were allowed to do kid things, without having a mortal fear of food being programmed into them. We got to play, and physical activity was allowed to be fun. Our day wasn't scheduled from dawn to dusk, leaving plenty of room for creative activity. Reading a book was regarded as an acceptable activity instead of a fattening one. We played outside in the worst possible shoes (thongs, aka flip flops!), or even in BARE FEET. Mom gave us cookies, and we thought of them as a wholesome snack because they were fresh and mom-made. Those cookies gave us the energy to build our bodies, our brains, and our spirits, refreshing exhausted little bodies that had been busy and running around for hours; refreshing needy little hearts with mom-love; refreshing tired little brains with a boost of much-needed calories.

What happened to all that? What happened to childhood being fun? Can't we back things up about twenty years and stop this foolishness? I am SO glad I'm not having children in the paranoid climate we have today.

P.S. I highly recommend Sandy's take on this, as well as Big Fat Blog's.

I'm not a conformist hiker, sorry!

I went for a nature hike the other day; my photos of the creatures we saw were posted right afterwards. I wanted to mention how I was a bad, terrible hiker, and I don't know how to go for a walk in the woods.

You see, unlike the perky middle-adged dude with his pair of walking sticks, spiffy hiking boots, and snappy little hat, I was clad in an ankle-length skirt, a t-shirt, and crocs. Shame on me! Everybody knows you don't wear a SKIRT to hike in the woods, right? And, no, I don't want to hear it about my crocs, and you know who you are.

But, see, we get down to the stream, and I was able to hike up my skirt (tucking the hem into the waist) so it didn't get wet. I had no socks to soak. My crocs were waterproof, and had good traction on the rocks for the most part. I was able to wade with my feet fairly well protected, without getting my clothing soaked, and when I was done, I shook the crocs dry, dried my feet on the lower half of my skirt, and walked comfortably back to our trail origin. My feet and shoes were dry and undamaged, and the skirt dried very quickly on the way back.

When I was younger, we (my mom, sister, and I) would go for long hikes down Mill Creek, wearing our oldest, crappiest sneakers. The worst part was the squelching of our sodden feet on the walk back to our house (it wasn't far, but it was up a hill); the combination of sand and wet shoes giving us painful blisters for even a brief period. The shoes were usually completely ruined, so we would try to save them for the next trip. They would dry out and become misshapen and horribly uncomfortable by the next excursion, giving us blisters on the walk DOWN the next time. Furthermore, sneakers would get waterlogged and heavy during these hikes, while the crocs were light as a feather and would float if I happened to slip out of them (which I didn't).

I almost always wear skirts these days, if I have a choice. I find them more comfortable than pants, and pants are typically binding and painful for me to wear. Crocs, while not very attractive, are one of the few brands of shoe that is wide enough for my feet (I generally need an extra-wide), and they are better than any other brand for reducing or eliminating my foot pain. They're also very affordable. If you don't want to see me wearing them, then you're more than welcome to buy me shoes that 1. fit, 2. are not painful to wear and 3. aren't made of dead animals. Good luck with that.