Meanwhile, Back at the Ranch…

Hey look, I’m a whole 2 weeks earlier than I was last time…only 2.5 months between posts.

I am still rocking the wheelchair. We got the lift adjusted so that Beloved can stow and un-stow it for me. I’ve been food shopping with him at the Co-op for the first time in months. And I’m actually doing more of the food shopping because I go across the street (and down the block) to Murphy’s to pick up what we need. They carry about 40-45% organic items, so it’s easy to do our shopping. They also have an “international” section with British food–and I get us British candies. They are generally all natural (nearly organic), using fruits and vegetables to give color and / or flavor. They are not as sweet as American candy, which he and I both like.

I am STILL waiting for the wheelchair ramp…6 months later. I see my doctor in another month and I’ll let her know it’s not shown up yet. I go for a “Functional Capacity Evaluation” in a couple of weeks; it’s a 6 HOUR testing session, without breaks. I’m figuring I’ll break…maybe an hour or two into it. I’ll do my best, but I AM disabled, no matter what anyone else thinks. And I am already anxious about the fact that the exertion WILL cause a fibro flare–but it is worth the price if I can get an unbiased, professional opinion/evaluation report to give to SSA and the LTD insurance company. I am NOT making this shit up–believe me, I wish it wasn’t true, but it is and I get very worn out, trying to prove it to people who just want to stop (or never start) paying me a disability check.

I have started pool therapy–which mostly involves going into the water (heaven!) and moving around without gravity pushing on me. The staff uses an electric lift to put me into and out of the pool, which means I don’t have to walk the length of the pool (40 ft or so) to get in OR out–which is what stopped me from going the last time I tried this.

I saw the neurosurgeon and he suggested it. Of course the first thing he said to me was, “I’ve looked at your MRI. It’s not good.” DUH! So I got to see my innards…I have bone spurs all up and down my spine. (And probably anywhere else there is bone, from degenerative osteoarthritis and spondylosis.) I am basically missing 2 discs in my neck (that used to be next to each other) as well as having a slipped disc in the lumbar section of the spine. No surgery, because if the surgeon were to fuse the missing area, it would be bolted to the vertebrae above and below–and put more stress on them. They also have the arthritis. So instead of helping, it could very well end up hurting me even more than just leaving it alone. Leaving it alone is what I’m gonna do!

I have a new psychiatrist as my “old” one retired. The new doctor took me off of 4 anti-depression meds (that I had been on, ostensibly for mood augmentation and stress/anxiety) and left me on just one. (Wellbutrin, 300 mg each day.) I still don’t have anything for panic attacks and apparently, that’s just fine. For everyone else. I get anxious about having a panic attack… So my latest medication regimen goes like this: Pain, Morphine, 5mg; Fibromyalgia, Duloxetine, 60 mg; Vitamins D and B12 all in the morning. Bedtime has another 60 mg Duloxetine, the Wellbutrin, GERD med, my omeprazole, 20 mg and for sleep, Trazadone, 100 mg. It all seems to be working pretty well and getting rid of unnecessary anti-depressives means I’m able to concentrate better, not as foggy in the brain, and not falling as often. (I fell TWICE within 5 minutes of each other about a month ago. It was not fun.)

I am also the poster child for using the safety glove that comes with a food mandolin. I didn’t, and was trying to cut jicama. Being a root vegetable, it was hard, hard and then flash! through the blade. I cut my right hand, at the base of the thumb (where thumb and palm hang out together) — cut it about an inch long and deep enough that I won a trip to the ER to get stitches. 5 of them pulled the wound back together…and I removed the stitches myself 2 weeks later. Sigh. I WILL be wearing the “almost uncut-able” glove when I slice veggies from now on. Or my husband will beat me. Wait…that could be a good thing…nah, it wouldn’t be *that* kind of beating, HAHAHAHA!

I’ve done 2 more courses on Coursera.com–Introduction to Psychology and oh boy, was it really different from the first time I took it, 30 years ago. They’re into something called “evolutionary psychology” now, and we actually spent time discussing the physical make-up of the brain and HOW feelings/thoughts are transmitted. It’s all chemicals and cells that receive the chemicals and turn them into electrical impulses. I also did “De-Mystifying Mindfulness”, which was totally awesome. I am just starting 2 more classes: “Magic in the Middle Ages” and “Healing Through Art”. I enjoy learning, especially about subjects that already interest me (like Psych) and the cost (free!) is just right for me.

I am continuing to do most of my writing on Medium.com–which isn’t saying much. Most of what I “publish” is responses to other authors’ posts. I’m sitting here trying to think of what I have been doing and other than putting together 630 piece puzzles on a regular basis…not much of anything. I am working on crocheted blankets for the grands…I like to give blankets to the kids on their BIRTH day and I’m 3 kids behind. In fact, the grandson turns 6 and hasn’t gotten his yet. Part of what takes time to make them is the size I make–about 6’x8′ — large enough to go to college and fit on a dorm bed. Eventually. (Or as a great afghan on their new sofa when they move into their own place. It’s a forever blanket!)

The weather has finally stopped raining and raining and raining…we’re actually seeing the big yellow ball in the blue room. And we’re also able to open up the house, with temperatures in the low to mid 70’s. It still gets chilly when the sun goes down; I turn up the heat in the morning to take the chill off the house until we can open the back door and let the sunshine in.

Beloved has been running his RPG on Friday nights for over 13 months–and was apparently not getting enough gaming. He’s now also running a Star Wars RPG on Tuesdays–and I’m playing in it. So far, so good. The rest of the players are pretty much okay, although we have one who argues with everything the Game Master says. Bad idea. The Game Master is God in this game universe and bad things might happen to someone who is an ass. As he said, “(This player) likes to split the group up–and bad things can happen when you wander off on your own.” <snicker> But at least this player’s energy is not toxic, as was the one player in the game we were in a couple of years ago–that I had to leave because I just couldn’t withstand an entire evening of being around them. Harmful energy–lots of anger in them and that came out during the game. I don’t have the strength or the desire to put up with that crap.

So the story for this game goes like this: The captain (played deftly by the GM as a “non-character player” (NCP)) has a freighter and has hired the rest of us to be the crew. I am the ship’s doctor who just “happens” to also be pretty good with a computer–which means I am also the one who can break into or out of security systems, find information and locate likely sources of whatever we’re looking for in any computer that just happens to be around. (Okay, so I’m a hacker and a quack(er). HAHA) Here’s the photo of what I look like (in game):

My name is Q’ez’ru and I am of the species called “Chiss”. We have the distinction of being the only real ally of the Empire–but not me. I’ve been exiled from Csilla (home planet) and will end up fighting with/for the Republic. It may be hard to see, but my eyes are red–all of the eye–the skin is obviously blue and it gets darker the more oxygen is in the air.

We’ve had our first bit of adventure this week: going to a planet to deliver something the captain had on board when we signed on…and finding out that there’s a person here with a bounty on his head. Did I mention that we like money and turning in someone for money is a great way to make it! We’ve had some fighting–and my pistol was set to “stun” because I’m not a soldier, dammit, I’m a doctor. But I was very happy to drug the bad guys into telling us all we needed to know and then put them to sleep for about 2-3 days and hid them in a convenient dumpster.

We’ll pick where we left off on next Tuesday–on another planet, looking for our bounty prize. So far we’ve managed to waltz in–we had the password for the planet security system (funny that…it was just there, on a data pad we found on a dying droid) and we’re going to bluff our way in–and out with the mark, if we’re lucky. I don’t count on that! I am enjoying this–and a lot of that has to do with the way my Dearest runs a game. He’s OCD about stuff, and gaming is one area that it really shows up. He made each of us a name sign, in a plastic frame, that sits in front of us with our real name on top and our game name across the bottom, with our picture in between. He’s got tokens to represent us, the bad guys and blood spatter tokens to represent the dead. The system for the game is a new one–it’s still got the ubiquitous dice, as any D&D/Pathfinder game would, but no dots to count. There are symbols–some are Jedi, some are Sith. The same symbol but opposite sides cancel each other out. There is success, advantage, and triumph — or failure, disadvantage and trouble. I’ve been rolling pretty well for my medical actions as well as the computer ones. Not having to remember how many dice of what size (4 numbers, 6 numbers, 20 numbers) and having to count the dots makes it a game that I can participate in without the anxiety of keeping up with everyone else and their counting the dots.

It also lets me get out of the house and be social (in a regimented sort of way) AND spend time with Beloved, doing something he loves (and I like pretty well). Of course it’s me and 5 guys … and most of them are just as socially apt as you’d expect a gamer to be…which is not much at all. But it sure beats staying home and putting together yet one more puzzle!

I’ve got some projects I want to do–including those kid blankets. I need to purge my closet and get rid of whatever I am not wearing regularly. I’ve been moving things around in the kitchen so that the foods–and the dishes/glasses I use–are more accessible to me. I got a shelf system that goes over the top of a door, and have loaded it with food that I got out of the cabinet, which leaves me more room to rearrange what’s left in there better. I have moved my spices–I once had a rolling cabinet that had 7 drawers and I put my spices into that. I had forgotten (but have since remembered, obviously) that I really like to have the spices laying down in a drawer–you can see what you want to use without having to paw through other bottles. So I now have all my spices in 2 drawers, easily accessible, in the dark (the best place to store spices/herbs), and neatly organized. Yay me!

Went on a date with the hubby last weekend, to the Minor Theatre for a movie and late lunch. It was an experience! The Minor is the oldest movie house in the entire US for feature-length films. It was built in 1914 to be a movie house and has not been anything else, ever. We saw “Wonder Woman”–I recommend it! We’ll do that again sometime since we enjoyed it so much. There’s nothing else of great importance coming along, except for that evaluation. So life goes on, as it just happens to do…I’m still breathing and that’s enough for me. Talk to you all again … maybe in only 2 months!

Namaste!

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Ongoing Life

It’s becoming harder and harder to see the good things in this world. I know they exist, and are definitely present in my own space. But the rest of the world? Seems to be going to hell in a hand basket. Politics, the economy, Orlando, Jo Cox…so much hate. If I wasn’t already clinically depressed, I would be after reading my FB page and seeing the stuff stream by. Thank the Maker for kitteh pictures!

I’m back on my anti-depressant and feeling better. Hovering around an aqua blue, I think. I continue to heal from my surgery (which could take up to a year or more before everything is back into the “original” place and totally healed). I don’t have a DVT but I do have a varicose vein. It’s not visible through the skin, but it’s a vein that is not working any more. I will have an in-office procedure to “kill” it, which will move the blood flow to veins that have better valves and will push the blood back up into my body, where it belongs.

I went to the neurologist last Monday and got a second shot in my neck. The first one kept me pain free for almost 7 months. I can live with this, for as many years as I can get away with it. I go back to the pain clinic next month to get the two shots, one in each side to deal with sciatica. Hooray for sedation procedures–I sleep through them and wake up to pain relief (within about 3-5 days; it’s not quite instantaneous).

My Beloved did the grocery shopping yesterday and brought me a big surprise–a Dungeness crab, all ready to eat. I tore that sucker up! Just a little pile of shells to put in the trash and I was a very happy, crab-stuffed kitteh! (The crab weighed almost 2 pounds whole. Even if half of it was shell, that would still mean 16 ounces of meat for me.) He also bought me some avocados.

I’m still coloring…branching out into “arty” pictures, like one that I did only in black and grey (and white, where I didn’t color). It keeps me occupied, keeps my mind active (what color next?) and keeps me off the streets. I’ve also continued to watch a lot of Netflix. It may not be much of a life, but it’s my life. And yes, I’m still playing Star Wars and killing things. I did get my hair cut yesterday for the first time in almost 2 years. Woo hoo! My oh so exciting life.

Beloved is a political beast and we have a fair number of discussions on the political uproar of the day. I’ll be so glad, so glad!, when November comes around and we’re done talking about the next President. (Although as he pointed out to me, the day after the election we’ll start talking about who will run in 2020.) The whole situation is pretty scary and the possibility for major chaos is great. Wonder what our nation will look like, this time next year?

The massacre in Orlando has hit me very hard. I identify as bisexual and have always been an advocate and voice for being allowed to love whomever you love, regardless of equipment. But the killings somehow drove it really home that the LGBTQ community IS my community, in a way that I had never known before. The amount of hate swirling around the event is overwhelming. The hate that caused the killing, and the hate of people who say that those killed somehow “deserved” to die. No one ever “deserved” to die. The fact that the club-goers were killed specifically for their sexual identity/orientation is heart-breaking and incomprehensible to me.

I am trying to think of a way, or of ways, to support and show support for all of my community, LGBTQ or otherwise. I try not to label anyone but rather, to accept and love all as my fellow beings on this little blue dot we call home. Life is hard enough without choosing to hate those around you. Hate and love are two sides of the same coin. Strong emotions, feelings that lead to all kinds of behaviors, motivation for our actions. If you truly stop hating, you don’t automatically love the ones you hated. If you loved someone, but have stopped loving them, you don’t hate them as a natural course. The opposite of hate AND love is apathy. You just don’t care what happens to them, what they do, and their life doesn’t impact yours at all.

I think hate requires far too much energy to keep it going–because it is not the normal, “default” setting of our emotions. I believe (and hope) that love is the more natural, the more primal and primary, setting. Love is a verb, an action, a feeling in motion. I love every single being on this planet. Now, before you think I’ve gone off the deep end, let me qualify that sentence. I love all–but I acknowledge that not every being is lovable, not every being behaves in a loving way. I can love the shooter in Orlando as a fellow being, feel sorrow at his obvious pain and anger. I also condemn, without hesitation, the actions he took.

It’s as I told my children when they were little: I love you. But I don’t love your actions/words (when they were being chastised). I separate the “who” of who someone is from the “what they do” actions. Maybe it’s all just a mind game, a fatuous way of trying to be noble or something… but it works for me. I start, try to start, from a default position of love whenever I am interacting with others. However, I do not have to accept cruel words or hurtful actions from anyone. It’s not that I can make them stop…just that I choose not to let it affect my life. (It will and does sometimes, but life is an ever-moving river and sometimes, you fall in. It’s the getting back out that matters.)

Solstice is coming next week and we’ll have the longest day…which will then immediately being shortening back into winter hours. Beloved’s sister, and her beloved, are coming to visit in a few weeks, which will be fun. Lots of eating out and going to the beach! And so my life goes on, in its mostly gentle pace…
Namaste!

Compassion for Others Begins With Compassion for Yourself

“Compassion is the keen awareness of the interdependence of all things.” ~~Thomas Merton

“Compassion is the greatest form of love humans have to offer.” ~~Rachel Joy Scott

“Until he extends the circle of his compassion to all living things, man will not himself find peace.” ~~Albert Schweitzer

“I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.” ~~Lao Tzu

“Be kind, for everyone you meet is fighting a hard battle.” ~~Brian Tracy

“It’s not what you say out of your mouth that determines your life, it’s what you whisper to yourself that has the most power.” ~~Robert Kiyosaki

I have tried, my entire life, to be compassionate to others; to offer a listening ear, a hug, or whatever else seems the appropriate response for their suffering and need. I would like to think that I have achieved this…but lately, I have realized that I never offer myself that same compassion. In my head, I speak to myself in ways that I would never dream of using to another person. I am my own worst critic: cold, judgmental, harsh, unfeeling and uncaring. Since I have become disabled, it seems to have gotten worst as I blame myself for not being able to do the things I always have, even though my debilitating pain is a valid reason for the inability to do them. I just don’t cut myself any slack.

I believe I have mentioned Toni Bernhard to you before. She is the author of three books aimed specifically for those of us who are chronically ill, who have the most valid reasons for not living “normally” because of our health. She consistently mentions self-compassion, being kind to yourself and forgiving yourself for not being able-bodied or doing the things “that need to be done”. She planted the seeds of learning how to be loving and compassionate in my head–but more importantly, in my heart. I follow the Tibetan Zen Buddhist path, with all of the selflessness that entails. It’s very easy for me to be kind to others, to do what I can to alleviate their pains. However, it had not occurred to me to turn this way of living inwards, to my own soul.

And so I have begun to incorporate this into my daily life, as best as any imperfect being can. I don’t always succeed, but that’s part of the joy of both self-compassion and the practice of mindfulness: you acknowledge the lack, then let it go and start again. I am learning to have the patience for myself that I have never had before, to acknowledge my limitations without judging and without blame. My limitations just “are”; they exist without any connection to something I did or didn’t do.

In making this a part of my daily routine, I have discovered that I am also losing the rather judgmental way I had been perceiving the strangers on the street. Specific example: I am embarrassed, even humiliated, that I do not shower as regularly as I used to (every other day),  nor do I shower as often as I need to. For someone who sits quietly most of the time, I sure can get stinky–and my hair gets greasy. Being showered and well groomed has always been important to me but I no longer have the ability to do it on anything approaching a regular basis. I simply lack the stamina and flexibility it takes to wash my hair or to bend and twist to wash my body. Some days, a shower is my greatest–and only–accomplishment. I think I had accepted this as just part of my life as a chronically ill person, but I was not self-compassionate about it.

Now when I see people on the street and they are less than my idea of groomed, I know from  my own experience that it’s not from a lack of caring about how they look but rather from not having the ability to do so. Eureka has a fairly large homeless population…so there’s a whole segment of our society that doesn’t have consistent access to a shower. I know that this does not mean they are somehow less of a person than someone who can. I just didn’t apply that mindset to myself.

It’s not just about showers. It’s about anything for which I can condemn myself. I have always said that I have a great deal of patience for everyone else, but never for me. With the onset of chronic illness, with symptoms that prevent me from holding a job, I am being forced to learn this patience for me and my (perceived) short comings. Our society makes a lot of perceptions about its members, some of them valid but I think mostly mistaken. Perceptions are judgments–and who am I to make judgments about others when I have enough issues of my own?

I am wrestling with more than not having a paycheck job. My mother raised me to be a Southern housewife, to take care of my husband, keeping house and cooking meals. Add to that cooking the fact that before I became this ill, I was working towards having my own business as a personal chef. I feel disappointment in myself because I cannot clean the house as I want to. I am particularly unhappy at my inability to make basic meals, never mind the “gourmet” dishes that I so enjoyed creating.

These feelings, while valid (because all feelings are), are neither useful nor self-compassionate. I acknowledge the concepts of using our minds to (help) heal ourselves but what I have cannot be “thought” away. I  have structural damage in my spine which cannot be easily remedied. Any sort of treatment that would work, could work only for a while; there’s a reason it’s called “degenerative” arthritis. I do believe that with mindfulness–but especially with compassion for my own being, I can reduce or relieve a great deal of my pain and various lesser ailments.

For example, I must acknowledge the limitations my body has now, not what it used to be able to do. If I refuse to accept the true state of my body, I may be able to “push through” and do the thing(s) I want to–but I will pay for it in greater pain and even less ability for a period of time exponentially larger than the amount of time those actions took. Simple facts are simple facts, and the truth is very simple: I am very limited as to what I can do now versus what I did *then*.

Another aspect for self-compassion that I need is to stop the self-deprecation. I forget something–a word that means just what I am trying to convey or a task that needs doing. Then I chastise myself for being “stupid”…when it just a state of being. I understand that being in pain means less attention to focus on anything other than that pain–but I am still working on allowing myself the compassion to not fret about it and certainly not to punish myself. I am attempting to retrain my mind such that I accept my state of being, at whatever point I may be, on any given day, just as a state of being, with no particular emotions tied to it–and certainly not negative emotions.

The only time we can be sure of is this moment…and this moment…and this moment, for all of the moments of our lives. Trying to live at any other time, past or future, means that we aren’t living NOW. NOW is all we truly can have, can experience in “real” time. To live in the now is very difficult sometimes, maybe more so for some people. All of us have connections to the past and hopes for the future but if we let those connections and hopes replace the moment, we are not living our lives to the fullest, nor being the person that has this moment. “Be here, right here, right now. Everything else is just a dream.”

What is so important about self-compassion? As with real and abiding love, we cannot be truly compassionate (or love) anyone else until we know that feeling for ourselves, within our minds and hearts. It needs to be a natural and inevitable part of each moment, something that we don’t need to think about, or have to do any specific ritual to bring about this behavior.  We “fake it until (we) make it”–and it only takes 21 days to establish a new habit. At first, it may seem contrived and even foolish to speak to ourselves with compassion. But if you will persevere and continue the practice of being kind to yourself, I believe you will find yourself both feeling happier as well as being a better person for that practice.

“If you believe it, you will act on it. If you continue to believe it, you will act on it again and again.” ~~Hugh Prather

Our minds create our reality–what we think the world is, it is to us. So if part of our world view includes negative ideas about who we are or what we are, we will continue to behave in ways that will support, even validate that view. We create a mindset that establishes a certain point of view and we can become locked into the view, no matter if it is actually true or not. A quote from Doug Adams says it all: “He was amazed at how different the world looked from a point three feet to the left.” That world view includes our own being; sometimes we need to step “three feet to the left” to get a new angle, a fresh perspective on what we thought we knew–even about ourselves.

If we are seeking to make our lives more fulfilled, if we want to create peace in our lives and to maintain the practice of loving-kindness and truly living in this moment, we must start from the point within ourselves that is the core of our being, the “who” of who we are. It is one thing to require real changes to ourselves because we are making poor choices in how we live–and quite another to berate ourselves for things beyond our control. Would you blame a person for being blind? Would you belittle someone for being elderly? Of course not. Then why would you–or do you–blame and belittle yourself for circumstances beyond your control?

And life is always about choices–and the magic of choices is that you can always choose a new way to go or do something. You are not bound to the past unless you CHOOSE to be; you are not endlessly longing for the future unless you CHOOSE to be such. Self-compassion is for those times when you are in pain (mental, physical, spiritually) and you want to lessen or alleviate that pain by understanding that all beings suffer and so the choice is the manner in which you deal with the problem.

Through compassion for our own state of being, we acknowledge our connection to the rest of the world, to everyone else around us. And we then understand that we are no more and no less than any other being–and compassion is the natural response for the human condition, even unto ourselves. The act of self-compassion opens us to a deeper relationship with those we meet. It encourages diversity and tolerance, mutual respect and a sincere honoring of the sacred being within each of us. And it begins with acknowledging our own sacred being, warts and all.

I close with this link: Self-Compassion from Toni Bernhard, in which she shares some thoughtful and inspiring quotes about self-compassion.

Namaste!

Karma Is Not Always Bad

Karma Sonnet

Pain, suffering and sorrowing I have been through
Anxiety, endless worry have been mine, in full score
Limitations and disability, the things I can’t do
No cooking, no singing, the loss of much that I adore

But the pendulum will always reverse its swing
Things will change and thus we are assured
Bad times do end, happiness will be our blessing
Good in equal measure to all that we have endured

The Universe does not do things in a haphazard way
There is a reason, a lesson to be learned in every act
A reward to be given, a price we must pay
But the balance between the two is always exact

I persevered through the troubles that have come my way
And I tell you: the darkest night leads to the brightest day

~~KGC

We’ve talked a lot about how shitty things have been for me, as it often is with those who suffer from a chronic illness/chronic pain. Well, today I am very, very happy to tell you about what has happened in the past 4 weeks. This is my list of thankfulness:

1. I got a phone call from the insurance company that handles my long term disability benefits. You remember my two part blog about going to Redding…well, apparently the doctor’s evaluation was on my side. So the agent that had been handling my case called to say that the decision to *not* pay me had been reversed and that a check for the back payments (nearly a year’s worth) was going to be cut and sent that week. I had to keep asking Beloved if I had actually received that call! Talk about a 180 degree change in mood–and the disappearance of an enormous load of anxiety…

2. We got the check and immediately began using it for things that we had needed money to accomplish, like paying off the balance owed on the van. So our vehicle belongs only to us! We got the bills all up to date and are setting up auto pay for all of them, so we don’t have to keep track of that in quite the same way as having to send checks or go online to pay. We also celebrated the doubling of our income by going to Stuft Potato for incredibly good German / Austrian food. The chef, Ivonne, is absolutely world class!

3. We had been waiting to move into the downstairs apartment (see here for why and how that would be possible), however Beloved fell down the stairs (missing the bottom step and then landing on his knees) 3 times in 2 months. I had also reached the point where I dreaded going out because I knew there would be the Bataan Death March Up the Himalayas to get back into the apartment. With the chunk o’money we could afford to move (deposits and etc.), so I began to cruise Craigslist and Zillow (rental/real estate company). I found several houses, all managed by the same company…who never replied to my application, emails or phone calls. Too bad for them. I found a likely apartment on Zillow and I did the online “I’m interested, please contact me” form on the site and then eventually, called the phone number on the listing. I had to leave voicemail, so I didn’t have much hope…but the property manager called me back! So we went on a Saturday to see the place and on Monday, paid the deposit, and on Friday did the walk-through and took possession of the keys. We moved in on the following Monday (since we had to set up a moving company) and here we are.

The old apartment was a glorified studio, with doorways but the only doors were the bathroom and the entrance/exit door. Ostensibly 3 rooms, but still only about 650-700 square feet. And those double damned stairs. Oh, and a bathroom shower stall that measures 31 inches, square. The toilet is back in a corner and requires sitting sidesaddle to do your business. (Even if you’re a super model or a child…but certainly not for Beloved and me, both of us being “of size”.)

The NEW apartment has TWO bedrooms (both with their own doors), a decent sized bathroom–and a BATHTUB!!!–, a kitchen and large living room. We have a dishwasher (rare in this area for some reason, but a godssend to me) and a 5 burner stove. “Five?” you say…yes. Two “regular” sized burners on the left side; a tiny “simmer” burner and a “power” burner (get that water boiling!) on the right…and in the middle, an elongated burner that takes up the space of two burners, clearly made for a griddle (or a very large roasting pan, so that you can make your turkey gravy in the pan the turkey cooked in, getting all the good brown chunks and drippings). We have a doorbell for the first time ever. There’s more cabinet space than I can possibly use–which is good, as a lot of it is well above my level of reach. 5 good sized drawers, and a cabinet that opens on the opposite side of the kitchen (by the door) because that part of the cabinet is not really accessible from the kitchen, being in the back corner of the peninsula. The kitchen itself is sort of “J” shaped, with the tall stem of that “J” being along the wall and the short side being where you walk in from outside, being very open to the living room, which makes that whole expanse bright and pleasant. And glorious icing on top of all of this is that we have a sliding glass door at the opposite end of the living room…which opens into our very own backyard–that no other tenants may use. It belongs to this apartment, and by association, to us.  Beloved’s office is set up in the 2nd bedroom and he has a window out onto that yard view; I sit in the living room and have only to lift my eyes to see the greenery.

There is a young grey-striped (possibly tabby) cat that comes through the yard–and watches me, comes towards the door…I think if I played my cards right, I could have my own kitty! But I can’t, for 2 reasons: I am highly allergic to cat dander, and we aren’t allowed to have pets. Oh well. I think I saw a hummingbird and once I can confirm it, I’ll figure out how to place a feeder within my usual line of sight and lure it into my yard!

The speed with which this all occurred was astounding. In just 8 days, we went from living “here” to living “HERE”. I’m already trying to decide how I want to decorate, what furniture I want to put into this place…which I never did at the old apartment. It feels like home, even with nothing but boxes sitting around.  Well, and my computer, which was the first thing unpacked. Of course.

4. My daughter, who lives in Baltimore, made it through the rioting–even though the apartment building immediately next to hers (like 20-30 feet away) burned completely. The firemen ran water over the roof of her building to keep it from bursting into flames from the heat but everything is fine now, no damage (fire, smoke or water) to her stuff.

5. My fourth grandchild, a girl, was born on May 19th to my son and his wife. I am waiting to hear what her older brother thinks of this addition to the household.

6. Beloved and I went to the beach 2 days ago…and we saw a whale, puffing a plume of water mist and moving in parallel to the shore. It’s the first time, but I hope not the last, for seeing a whale. Even with only being able to see so little…it was a moving, exciting, WOW! event.

There are other little things that are moments of serendipity…you know that when the bad happens, it seems that everything, even down to the tiny details, is bad. Okay, but when the good happens…it overflows, it drowns everything in good, joy, healing. GOOD Karma shows up in some of the oddest places…like having the two rolls of drawer liner fit exactly into the 5 drawers of the kitchen…without my having measured before buying the liner. The 3 large canisters that hold flour, sugar and rice…will fit in the alcove between the master bedroom and the bathroom–just 10 steps or so from the kitchen, but not taking up room within the kitchen itself. And they look nice, so it’s a good thing. (Again without measuring prior to moving…) The closets in both bedrooms have built-in shelves and boxes; not gorgeous, but highly functional. The closet in Paul’s office (2 bedroom) has a stack of cubby holes that are exactly the right size for him to put his papers away, protected and accessible. Even our fortune cookies have changed their tune from things like “You are strong and able to withstand even the hardest times” to “Your business will be successful and you will be famous”. LOL!

Anyone who knows us (and our circumstances) would agree that Beloved and I have been through a LONG, hard time of testing, troubles, and general bad stuff. We’ve been together for 5 years; 4 of them have been … not good, except for each other. I know we had a whirlwind romance..meeting on a Sunday and 8 days later, living together–and not being apart since except where we couldn’t help it, like his two hospitals stays. (Very similar to the 8 days it took to get our new apartment…hmmm, I sense a theme here!)
But it also feels like we’ve had the trials and tribulations inherent in any long term relationship … but 20 or 30 years of occasional problems crunched into that 4 years. No breaks from the next problem…everything piled on at once. I figure that means we should be relatively problem-free for the next 20-30 years of our marriage. (Fingers crossed and sincerely hoping that is so!) We’re certainly off to a good start: assured disability income for both of us, which means that the SSDI limbo I am in is much less of an issue; new and very acceptable apartment, with a landlord who lives upstairs and would be happy if we stayed for years; a vehicle that belongs to only us; a bathtub and shower that greatly eases the effort required to bathe; a dishwasher, so that I don’t have to choose between doing the dishes or cooking the meal; a green space that is ours, for container gardening and grilling (or as I call it, “Making burnt sacrifices to the fire gods”).

Karma Haiku

Good needs bad to show
the cycle of our life flow
to learn all we know

The moral to my story is this: for those of you in bad, anxious, depressing, and any or every other negative situation…hold on, keep walking (or crawling, wherever you are in the dark times of your life) through the storms. There IS rest, joy and good coming for you–in the time frame of your life. Stay balanced, even when everything around you is chaotic; peace will be your reward. The Wheel keeps turning, life moves on in that ever-widening spiral…and we will be blessed in at least equal measure to the burdens we have had to carry…and usually blessed in greater portion for our efforts.

Peace and blessings to you all, Namaste!

Disabled or…UNable?

So here I am, at the end of week 3, still waiting for some word about my SSDI and whether I’ll get it or have to go to the appeals panel–which could take another couple of years. I began this Death March of Bataan through the application/appeal/adjudication process 3 years ago. I should have Long Term Disability (LTD) benefits still being paid, but the insurance company decided that there were 3 jobs I could do and kicked me off the small raft that had been helping us stay afloat in the sea of financial necessity. So here we are, living on Beloved’s SSDI and the incredible generosity of his parents who throw money our way with an embarrassingly often frequency.

Everything occurs for a reason. I believe this completely. It doesn’t mean that I have to like the occurrence. There is a lesson to be learned from all that happens in our lives, and I am learning a hard fought and almost overwhelming lesson this time around. It began with my diagnosis of fibromyalgia and has only gotten more and more intense as it goes on.

The doctor told me I had fibro and I arrogantly stated that I would not let my disease define me. First lesson: my disease defines me, defines my level of activity, defines almost every single thing I do or say in some fashion. I learned to accept help from other people (mostly–I still ignore this one on too regular a basis and still pay for it in pain).

I began to take medicines and we had to try various things before I settled into my current regime. I’m not going to list all of that here–but let’s just say that when I go to a new doctor, or to the ER, I have to list my meds and it’s always a show stopper and impresses the staff. I resent the fact that I take 4, FOUR, medications specifically addressing mental issues: depression, anxiety, mood and sleep (or the lack and poor quality thereof). I take narcotic pain killers, but I have a very limited supply because the Veterans Administration (VA) healthcare is concerned that I will become addicted or sell them on the street or something. I need about twice the amount I am taking now; I was supposed to have a pain management team that would work with medications and various therapies (massage, chiropractor, physical therapy in a nice warm pool, STIM and TENS therapies and etc) but I haven’t heard a peep out of that group since they insisted I go to SF for an MRI which was done in May. Four months later and there’s nothing more done.

(Side note: I seriously doubt my propensity for narcotic addiction since my VA care provider in Fredericksburg VA stopped my narcs COLD TURKEY. And I didn’t have withdrawal symptoms at all. So there!)

I have learned that I need support when I walk because I’m very unsteady on my feet. I have learned how to be a cook, instead of a chef–preparing meals that are simple and easy to make, with a minimum of preparation–no chopping lots of vegetables into pieces to stir fry, no complex recipes that require more than about 4 steps. For someone who was at the point of trying a new career as a personal chef…this hurts beyond words. I love to cook, I love the creativity of putting things together in a new way, I love the satisfaction of feeding people and having them enjoy the food. In many ways, I am a true “kitchen witch”, pouring myself into the food I prepare to make magical meals for friends and family. I am happy when I cook. And I can’t do it now.

I used to have nearly photographic memory, a prodigious ability to recall, great concentration and instinctive multitasking. Gone, gone, gone and gone. I have an enormous vocabulary–but I “lose” words in conversation and writing…you can’t tell that some of my blogs took HOURS because I would want to use a specific word, a word I know, and yet for the life of me, cannot access in the dusty, messy library of my mind. And I have to stop, let go of reaching for the word and sort of think around it, hoping to lure it back into use. Like intentionally ignoring a cat, waiting for it to come to you when it realizes that it is not your focal point. And it can take just as long–as anyone who’s ever had a cat can tell you.

I used to enjoy groups of people, parties, dinner out, all that social stuff. Now crowds terrify me–and I consider anything more than about 5 people to be a crowd. Going to a store or a restaurant becomes an exercise in NOT looking around me too much, not letting myself acknowledge just how many people there are within my line of sight. I focus on my shopping, or on my meal. I will sit with my back to the rest of the restaurant just to be able to do this. And it’s not that I’ve suddenly become phobic of another human being–one or two at a time is not a problem. It’s just the larger the number, the greater the impact, the faster I need to go home to my nearly solitary nest.

And for those of you with a chronic disease, you will understand what I mean when I say it’s not just the anxiety of being around people. It’s also the great amount of energy that being social requires. The interaction, the conversation, all the little things that make up our social lives, takes energy. And frankly, those with chronic illness are made aware very early on in their trip on this road that energy is the one thing you will never again have enough of, that you will often lack to the point of poor personal hygiene and eating carry out way too often. It takes energy to hide the pain, to be polite, to speak at any length. And when I say “hide the pain”, I do not mean that you cannot share the pain or how much you hurt but when that’s about all you can talk about…people start to avoid you. Most do not want to face such an obvious reminder of the fragility of the human body. Some cannot believe that it’s all that bad when in fact, it IS all that bad. And because you’re not “out and about”, your actual ability to hold a conversation that is equitable with the person you’re speaking with becomes impossible. They talk about going places, doing things, meeting people. We the chronically ill are hard pressed to suitably astound someone with the mere fact that we took a shower today–although for us, it’s quite an achievement. And when asked, “What did you do this weekend?”, we recoil at giving the answer of “Slept most of it.”–AGAIN. The things we fight for, the efforts we make to gain some semblance of a life…are the mundane, unmentioned activities of daily living for everyone else. Taking a shower, preparing a full meal, going to the grocery store. These are major accomplishments for us…and so trivial as to not even merit mentioning to the rest of the world.

Over the past 3 years, I have developed an evolving and greater definition of “disabled”. Dis-abled, as in “not able”. You’re willing, but you just can’t. And “unable”, which means not able as well, but at least to me, seems to carry the faint hint that it’s a voluntary decision. “I’m sorry, I’m unable to make it to the party.” However…I can use both terms in their purest sense of “not able”. Fibro causes a variety of disabilities and my physical condition makes me unable to do things. I have debilitating levels of pain, all the time. Pain has been my constant companion at some level, for all of my life. Lately, it demands most of my attention–and most of my energy trying to accommodate it and to live some sort of a worthwhile life in spite of it. Not a whine or seeking sympathy, just a matter of fact explanation of the worst symptom I have. Chronic fatigue, poor sleep, inflammatory bowel (and bladder) syndrome, depression, anxiety…the list goes on but pain tops it every time. It’s been in the “Top 40” (haha) longer than any other song. Gallows humor, but why not laugh at my problems, rather than singing dirges of doom and gloom all the time. I try very hard to not be the cranky, unpleasant sick person.

I had my SSDI adjudication 3 weeks ago. I went into the video conference room, dressed to carefully cover all of the tattoos, tongue ring removed, hair re-dyed a color I haven’t seen in 15 years–my (mostly) original natural color again. I answered questions, the judge talked, my lawyer talked, the vocational expert talked…the judge thanked us and left. I mostly saw the top of her head, as she did not make eye contact with me once the introductions were done. This may be her way of keeping aloof of emotional interference in her role as impartial arbiter of people’s fates…but it actually made me feel like a number, just another piece of paper, in her metrics for cases allowed versus denied. She gave no indication of which way mine would fall, just said that she would issue the decision. My lawyer says that she is known for this sort of passive-aggressive manifestation of power. I guess she does it to prove to everyone just how incredible a judge she is, weighing every case so very carefully…and it might be more impressive to me except that according to the SSA’s own rules, I should not have been denied upon my second appeal (the last step prior to this one) because I am old enough and cannot even do “light” work–which involves being able to lift 10 (maybe 20?) pounds…for at least 1/3 of an 8 hour shift. But someone else decided that just maybe I could, so…denied. And there I went, into the adjudication circle of Hell. (By the way: a gallon of milk or water weighs 8 pounds. That is now a two-handed lift for me and I cannot repeat it more than two times.)

I thought waiting for the adjudication was bad. I thought waiting for the adjudication without my LTD benefits was worse. Well, the worst thing of all is the wait, with no specific scheduled end time (like waiting for the hearing), for the decision. So much depends upon this coming to me in a very timely manner. I will appeal my LTD dismissal–and I only have 180 days to do so, which ends sometime in November–but if I can send the SSDI certification of disability, it’s pretty much a done deal and they will have to reinstate the benefits–until 2028, when I turn 67 and “retire”. It means the difference between SSDI and what the LTD benefits by themselves had been, which results in a net increase in our income of several hundred dollars a month. And while that may not seem like a lot, when you’re talking about a combined family income of about $3500-$4000 per month (or about $48,000 per year), that “several hundred dollars” additional is about 10% or so of the monthly checks. Helps provide for things like upgrades on technology and other “little” purchases that can mean the difference between a bearable life and a pleasant life.

Beloved is OCD. He’s OCD about numbers. Money is numbers. Need I tell you that he is practically frantic with worry and not knowing how the budget will work? His mental illness manifests in his emotions…and he’s the cranky sick person. My worry always hits my stomach. I’m not eating well, not at all. In fact, a great deal of the time, I’m not eating. That’s bad. And what had been barely managed pain is totally out of control, as I have hit a full blown fibro flare-up that makes me the crankier sick person. The bottoms of my feet hurt to walk on. It hurts to touch my skin, anywhere I touch. Which adds another aspect to the disease: I long for, starve for skin contact. I am a tactile person–or in laymen’s terms, a “touchy-feely” kind of gal. I want my husband to touch me (and it’s not about sex, you perverts!) and to pat, cuddle, stroke, scratch my back. And he knows that it hurts me, so he doesn’t…and that hurts me inside, even as I understand his reasoning–and I can’t really find fault with that decision. It’s not him, it’s me…he is trying to avoid inflicting more pain and my damned disease (double damned, triple damned) prevents me from being able to have anything resembling the normal intimacy of love and a committed relationship.

I am nearly frantic with worry…not just for me, but because this is also affecting him so deeply. I mean, I know that of course it would. It’s not just that it affects his standard of living, which it does, but that it affects ME, his chosen wife. So we’ve got this cycle of being concerned about the decision itself as well as the escalating damage it’s causing to each other. I half joke that by the time this judge does finally render a decision, I will be utterly and truly disabled, beyond what I had when I saw her. Three weeks ago. Dear gods, it seems like three months. And theoretically, we have from one to three more weeks of dangling in mid-air before we do get the decision. Everything else is on hold. There are things we want to do, once we know about the money which are having to wait until we have the numbers. I have my LTD benefits dangling with me, adding another fishing weight to the pounds of weights I already had. I’m holding on by a thread and I’m afraid it’s going to break before the decision is handed down. At which point, Beloved and I will need adjoining rooms in the local mental health hospital–and matching fancy white jackets that let us hug ourselves.

I’ve been trying to maintain my “#100happydays” (see the website) during this time and frankly, it’s just not working out very well. The original intent of the foundation was to get people to slow down and see what in their lives makes them feel happy–and to acknowledge it daily, for 100 days. Most people drop out because they don’t have the time to do it…sad commentary on our society. My problem is NOT time–it’s the one things I have endless amounts of. It’s that the current situation is so taxing to my mental and physical well-being that finding things I’m happy about is hard or inane. “I’m happy I took a shower.” Yeah, and so are the people around me.

Another area of my life that’s taking a serious hit is my ability to stay in touch with my family. I have to deal with a time difference of 2 or 3 hours, depending on whom I want to speak to in addition to working up the energy for that conversation. It’s not that I DON’T want to talk to them, it’s the fact that holding a phone to my head for an hour hurts my elbows (because I switch arms to avoid completely destroying one). One of the things I want to get “when the money comes in” is a hands free headset to plug into the house phone, so that I don’t have to hold it. In the meantime… And there’s the inescapable fact that I lose track of the time and the days…then the weeks. Time slips away from me and I just don’t realize how utterly long it’s been since I’ve talked to…my mother, my daughter, my son, etc.

Worse yet is that I caused unhappiness in my son’s household…my fault totally and my daughter-in-love felt that she needed to “unfriend” me on Facebook. Her right to do so and I understand why–but she is my main, almost sole, connection to the Froggy grandson. I owe her an enormous apology and want to do it when I can talk to her–but I lack the actual energy to deal with this now…so time slips by and the wound has not been addressed, nor forgiveness asked. Not for a lack of wanting to…but for the physical inability…disability?…for me to do it. Just trying to write it here makes me weepy, so I think I’ll let this go for now. Hopefully I can repair the damage I did and we can knit back a relationship–or I’ll pretty much never know what’s going on with that part of my family.

So that weighs on me, lurking there in the back of my head. To say that my life is NOT happy at this point seems melodramatic, but it’s a relative truth. And one of the most aggravating parts of this dangling is that once it is resolved, hopefully for the good, everything else will start up again. My whole life is teetering in balance, waiting for one woman’s decision–and that one woman is unreachable, impervious to my plight and holds the outcome merely as another number in her record, to show that she’s doing her job oh so wonderfully. This is as bad as being told your lab work came back with some seriously bad numbers, but you’ll have to wait a month or two before you can see the doctor to find out if you’re going to die or not. The anxiety and fear that both of those situations cause is…pretty damned large and leaves no room for any other activity because if you move, you’ll break that thread.

I have a disability. It makes me disabled. I am unable to work and I need to have SSDI benefits in order to pay for the things that are required to live. I am unable to alleviate my husband’s suffering because of my own suffering. I am unable to move on with my life, being able to make whatever necessary accommodation I must to deal with fibro. I am stuck in a holding pattern (like an airplane) and I am running out of fuel. Dire and dreadful, yes. But “it’s always darkest before the dawn” and “you know a thing by its opposite” so if it’s real dark now, when the light comes–and it will!–we will appreciate it even more. As a Buddhist, I strive for the Middle Path, for balance, and for a simple life. Doesn’t mean I give up everything I own and become an aesthete. A simple life, a minimalist life, is where you have everything you NEED and an appropriate amount of what you want, and a few of the things you wish for–and not all the “things” are tangible. Part of the Middle Path is the lack of attachment to things–again, not always meaning tangible things like cars or fur coats–but the losing the attachment to whatever holds you back, drags you down, makes you live an incomplete life. I have a disability. I am disabled. But I am NOT my disabilities and I am not attached to being disabled. It is a state of living, not a definition of who I am. I am me, just me. I happen to be disabled. It means no more and no less than being brown-eyed or having tattoos.

I share this with you all not because I’m looking for a pity party…but because I know that there are others out there who are also dealing with disabilities, with dark times. I would hope that you could find your own Middle Path, the way through and then out of the darkness–and I suggest that sharing gives each of us a little candle, glowing in the blackness like a beacon. Enough candles will destroy the darkness. I share mine with you, and hopefully light your candle so that you can see there is a way out. Namaste!

High Anxiety

So tomorrow is my adjudication hearing for Social Security Disability Insurance (SSDI). I started this paperwork labyrinth 3 YEARS ago; it was rejected twice, which puts it at the current level of requiring going before a judge and trying to explain just why it is I need permanent disability checks. Nerve-wracking hardly begins to describe it. For those of you considering going through the process, or those who have begun this long and winding road… one piece of advice I would sincerely offer, with the hopes that you will listen to me: get a lawyer! Find a good lawyer in your area that handles SS cases. The standard agreement is that they receive their fees out of the settlement, from 25% up to no more than $6000. (It was that both in VA and here, in CA)

They can help you fill out and submit the original forms (and the nearly identical updating information forms); they will follow up on your behalf and then tell you what you need to do to keep the process moving; they will gather your health files all in one place–and ALL of your health files, plus any other pertinent paperwork to your disability (workman’s compensation, etc). And should you also reach the point of having to go through adjudication, they go into the hearing with you, they will have prepared you to deal with describing your disability/ies to the judge in a way that is factual, accurate and yet hopefully sway the court to your side. Tell your lawyer the truth, the whole truth and nothing but the truth when you are establishing a client-attorney relationship. And listen to whatever your lawyer tells you about telling the judge–and how to tell the judge.

For example, I am not to tell the judge that I have fibromyalgia. I do, but that doesn’t really hold much water. On the other hand, if I can talk about the functional limitations I have (more than I care to admit), and that they are related to “what my doctor said was fibromyalgia, which seems to answer the question of what it is”, that’s a much better way to get my point across. I can indicate a willingness to work, except goshdarnit, my hands are painful and swollen, so I can’t type for more than about 2 or 3 hours at a time. I’m even willing to accept some other diagnosis although fibromyalgia seems to be the answer–but in the meantime, I am actually dealing with chronic fatigue (taking at least 1 and sometimes 2 naps a day) and chronic pain. I have a bulging disc in the L3 – L4 part of my spine that impinges on the nerves and causes a pain like a sword down my thigh. Because of that, I cannot stand or walk more than about 15-20 minutes at a go. Lifting a gallon of milk or water, which weights 8 pounds, is now a two-handed lift for me or I will drop it and I cannot do that lifting repeatedly.

I think you get the idea. So I have been working very hard on both preparing the functional answers for my condition as well as studiously avoiding focusing on the time ticking away to this dreaded/hoped for/scary / necessary/life-altering event tomorrow. We need so much for me to be approved; the paycheck would mean the difference between living on the edge here or living a pleasant life. And if we’d be on the edge here…means that if this was happening back in VA, we’d be living out of the car. Or cramped into someone’s extra bedroom, if we were to count upon the kindness of others–which is not a bad thing for a while, but not the way you want the rest of your life to go. Know what I mean?

Beloved is almost out of his mind with the anxiety. Money is numbers and numbers are his MAJOR OCD issue. He also has a inhuman drive to protect and care for me and this is not helping. The worst part is that neither he nor I can do a good godsdamned thing about it. Someone else is in control and we have NO idea which way the deal will go. So we’re both pretty heavily medicated for anxiety and will be through the hearing tomorrow. He cannot come into the actual room where it will take place (it’s video conferencing, so it’s a room with a screen on the wall and a table with two chairs facing that wall — and of course, the requisite technology for the actual hearing), so he will probably go do “something” else for the about 2 hours this should take. No idea what, but I hope that it will keep his mind occupied enough that he won’t be a frazzled basket of nerves.  That’s my job!

I have a football mouth guard that I’ve been wearing because I’ll realize I have a headache…why do I have…oh yeah, my jaws are clenched so hard that they ache, and it’s radiated up into the forehead. I can only imagine what my blood pressure is. I have been trying very studiously to find other things to do and whatever it takes to distract me. I’ve actually started playing “Star Wars: The Old Republic” as a way to do something a little more involved than the simple flash games I play. It’s like WoW, sort of…complex, lots of stuff to personalize, lots of stuff to keep track of… we’ll see how that works.

And I’m feeling really stupid and sad that I have somehow managed to miss contacting my children very much in the past oh 4-6 months. My mother has figured out that she needs to call me about every 6 weeks. It’s not that I’m avoiding any of them; it’s just that the time difference between me and them always catches me, and time here moves at a different rate, I swear to the gods. I think a week has gone by and it’s been more like a month. It doesn’t help that we don’t have a set schedule, so the only reason I know what day it is is because I have my computer time and date set up to also show the day. So aside from not being up to date with everyone, I just plain out haven’t talked to them in well, forever.

And I totally fucked up with my son and his wife…just so you know, it’s never a good idea to show up, out of the blue so to speak, and ask for money, no matter how small (or large) an amount you’re asking for. I should have known better but apparently didn’t. So they were pretty angry with me and I deserved it. I only hope that I can repair that particularly spectacular mistake because I don’t want them to stay angry with me, especially my daughter-in-love. Another reason for me to be getting SSDI, so that we don’t have to ask for help, which is humbling enough to make it difficult…and it’s really, really stupid to make that request the only time you contact someone, anyone. Guess I’m really, really stupid.

I miss both of my kids, their chosen loves and the grandbabies… it was part of the price we paid to move out here and I would tell you that it was the biggest price, the hardest price to pay. It’s the one area where I have to try not to second guess our decision to move and to have faith that we did the right thing–and hope that it will be proven to be such in the long run. I am hoping that my SSDI hearing will go well and that I will start getting a paycheck. I will also be able to slap my Long Term Disability insurance company (from premiums I paid when I was working, not associated with the SSA) and make them start paying me again. They will have to pay the difference between the SSDI check and what my LTD benefits through them paid each month until I turn 65–and that’s $200-300 a month. In addition to the SSDI check. If that all works out, I believe that the loss of anxiety about money will bring enormous relief to both me and Beloved–and will let my brain return to some semblance of its former glorious abilities! Which means that I can be much more proactive about phone calls and Skype sessions with my family, on a much more regular basis.

So I am making a list of things to do (that I’d like to do) WHEN I get my SSDI. (And I’ll beseech any gods that will listen. Poor Lord Ganesh, “Remover of Obstacles” is getting an earful, let me tell you!)
First and foremost, mend the fences that I so stupidly knocked down.
Secondly, truly get back into something creative. I want to draw, watercolor and charcoal pictures. Got the stuff to do it. Now I just need to “make it so”.
Third, spend more time blogging and less time playing on line. Games have their place, but should not be the primary activity for me. If I am not up to blogging, I’d like to try reading again. We haven’t made it to the local library and that’s something that needs to be rectified.
Fourth, figure out just how much handicrafts I can do–and do it. If I need to change up what kinds I’m doing, I am open to that. Crocheting is proving a little hard; I may have to go with those seriously big afghan hooks because I lack the fine motor control to work with thinner ones. Or get big fat knitting needles, same reason. Jewelry making is almost completely out for now, since that is a very fine motor task. But there’s got to be other things I can do that will feed the creative urge.
Fifth, get more involved in the world around me again. Maybe volunteer at the local shelter–and if not that, and what is really my first choice for a volunteer job, give some of my plenteous time at the local hospice. I have the background for it…
Sixth, join Beloved’s gaming world once he gets back into it–it means at least one night out per week, amongst people of our own kind, playing grown-up make believe. I can do that!

I’m tired of being isolated and as much as I love my husband, our dinner conversation is less than scintillating when we’ve nothing to talk about. “What did you do all day?” “The same thing you did.” I have to work with my recently acquired and seriously pain in the ass social anxiety, so I am not sure what we’ll end up doing that won’t trigger panic attacks. Guess we’ll find out.

So tomorrow looms over me like a tsunami (which is my personal nightmare image). Wednesday I go see my (new) PCP and have to get new scripts because with the change in providers, all the scripts I had for my much-needed meds…are gone off the VA medical site. Sigh. Friday, I get my eyes checked for the first time in about 3-4 years. Wahoo! Gonna talk about getting computer glasses, since that’s actually the most important level of correction I need. Saturday is my cake day, with nothing particular planned. Other than changing which age group I belong to…no big deal.

If you’re reading this before Monday and want to send some good vibes, I’d be happy to welcome them! I’ll try to update this in a timely manner, assuming I get a decision tomorrow–which may not happen and THAT waiting will be almost worse. This is not the final step before having to give up. If the hearing goes against me, I will go up to a Federal court for an appeal to that decision. And in the meantime, there’d be no money coming in… ACK. Try not to think about that. Think happy thoughts, Kitteh!!

Peace and blessings to you all!

It’s Not Easy Being Zen

I started this blog over 2 years ago. I had no idea when I began it that I’d be where I am at this point of my life: mentally, physically, spiritually. It’s been a rough and gritty road, with some sizable potholes. It’s also been a while since I actually wrote about what’s going on with me, fibromyalgia-wise. So let’s address that.

First, let me update you on my medications list, which is quite a feat to be able to recite the names, doses and such. Much longer than I’d like it to be, but I am thankful that every med seems to be doing what it’s supposed to and that makes life better. So let’s make a list of what, how much and what it’s for:

AM Meds:

One Gabapentin (Neurontin), 300 mg, for neuropathy; also acts as a mild anti-depressant
One Hydrochlorothiazide, 25 mg, for swelling; it’s a diuretic
Two Hydroxyzine Pamoate, 25 mg each, for anxiety; prescribed to be taken up to 4 times a day as needed
One Hydrocodone APAP, 5/325, for pain (aka Vicodin); prescribed to be taken twice a day for pain with an extra few for those really bad days when I need 3)
One Venlafaxine, 225 mg, 24 HR SA, for depression
One Lamotrigine, 25 mg, for mood stabilization

PM Meds:

Two Gabapentin (makes the daily total 900 MG; the two at night help with sleep)
Two Hydroxyzine Pamoate (also helps with sleep)
One Omeprazole20 MG for acid reflux/GERD
Two Trazodone, 50 mg per tablet, total is 100 mg; for sleep (specifically)
Two puffs, each nostril, Fluticasone, 50 mcg, for sinus and upper respiratory decongestant

And I have Clonazepam, 1 mg, as an “emergency” anti-anxiety, to be used as needed, but no more than one per day

Wow. Heckuva list. So let’s make a synopsis of what I’m taking all these chemicals for: I take two different medications for pain; I take two different medications for anxiety; I take one medication that is specifically for depression, but I have another that also has anti-depressive effects. I take one medication to help with the swelling in my feet and hands. I take one medication to keep me breathing (well, at least not as stopped up in the nose as I would be otherwise). And I take one medication for mood stabilization.

Let’s talk about that one for a moment. Lamotrigine is what my Beloved but bi-polar husband takes for his mental illness. He’s taking a way massive more amount than I am and it works well for him as long as everything else stays reasonably stable. He’s fortunate that in his being bi-polar, if things get out of whack, because the illness is brain chemistry, he can literally “reset” his emotions by taking a nap. (We all do that, did you know that? You reset your brain when you go to sleep. Probably because it runs on Windows 95, haha.)

So about a week after the Worst Thing happened (NO more LTD for me), I got a letter from the SSA with the date for my adjudication hearing with the judge. I have gotten a new lawyer, as the one in VA has formally relinquished the case–and waived her fee. I feel bad that she lost a lot of money on me and am very, very grateful for all that she did, for both of us. My new lawyer spoke to us for about half an hour, 45 minutes–and it was sort of an audition on my part, to see if he would take the case. He did, and seems very competent. I also figure that he wouldn’t take a case he thought he would lose.

[EDITED]

He did make a really good suggestion which is a better way to describe my disabilities, rather than just saying I have fibro. Frankly, that’s what my psychologist should tell me, but hey, I’ve only had one meeting with him and maybe he will talk with me about it. What I’m supposed to do is speak about what is currently disabling, in a functional (or in this case, non-functional) manner. This is going to be hard for me, because it basically is a list of all the things I cannot do, or cannot do without great pain or effort. I’m going to have to face up to the reality of my disability, which I have been kidding myself that I was doing, just by covering it with the word “fibromyalgia”.

My husband said to me, “You’re supposed to be a good Buddhist” and I replied, “I TRY to be a good Buddhist”. So I can use this as a chance for advancement on my spiritual path as well, if I can frame my life to be “in the moment”, which is very important to me. I believe in the NOW, each moment passing, never to be repeated, to try to live each moment to the fullest, with awareness and focus on that moment. (And then let go and move on to the next moment which has come.)

So here goes:

Hi, I’m Kate and I am disabled. I can no longer stand or walk for more than about 15 minutes without excruciating pain in my back and down my legs (sciatica); I also have neuropathy in my legs and arms. I have swelling and pain in my hands to the point where I am clumsy holding things and I have to be very careful with heavier objects or I will drop them. I cannot twist my hands to empty an ice tray without pain. While I am on the computer for most of my day, I have several different types of activities that I do which changes up how I am using my hands–I mouse for a while, I type for a while and I use a game controller to play computer games. I also stop and stretch my hands, or flex, then rub them, to ease the pain. I have both Irritable Bowel Syndrome and Irritable (Stress) Incontinence, which means when I have to go to the bathroom, I HAVE to go. I have very limited range of motion in my arms and can seldom lift them above my shoulders. Things put on higher shelves are no longer accessible. Pulling on clothing over my head is done by putting my arms in the sleeves and pulling everything up to the shoulders, then ducking my head into the neck hole. Activities of Daily Living (ADLs) are difficult for me; combing my hair is tiresome because it requires me to lift my hands to brush the length. I shower when I have the energy to deal with all of the bending and stooping, scrubbing and hair washing. I have stopped wearing a bra because I cannot put it on by myself. I have also stopped housecleaning for the most part, only dealing with dusting, sweeping, cleaning the bathroom and etc when the filth passes my point of being able to ignore it. And I still do it the way I have for the past 20 years–do about 20 minutes of cleaning, then sit and rest for a while, then do some more cleaning and repeat the pattern until the task is done. Or I’m in too much pain to continue.

I have depression because of my pain and the various occurrences related to my disability, such as losing the LTD disability benefits. I have contemplated suicide more than once and have thought about how I would do it. My most recent suicidal ideation (great term, huh?) was when I got the notification that I had lost those benefits. If the Pacific Ocean wasn’t so damned cold, I’d have just walked into it and kept going out to sea. Truth: I don’t want to be dead. I just want the pain to stop, I want the uncertainties about money and our lives to settle down. I want peace.

I have anxiety, duh. Problem is, it interferes with my life. I am developing social anxiety; I hate to be out in a crowd of more than about 8 people. Small crowd. And very ironic, since my life has been filled with people–I have spoken to large crowds, I was responsible for the local Pagan group back in VA, I had a weekly dinner date with my friends–and we could be as few as 3 and as many as 20. Now I begin to freak out if there’s more than about 3 or 4 people around me, like you would have at a dinner table. I often don’t really want to leave the house–not quite agoraphobic, but definitely not good. This limits me in so many ways–I have no friends here, just the wait staff of the various restaurants we go to, or the staff at the grocery store. But nobody that we say, hey, let’s get together.

I would attend services at Humboldt Unitarian Universalist Fellowship, but all too often, one or the other of us is not up to going. So neither goes. Lots of nice people–completely overwhelming to me. But probably our best chance to meet friends, people we can hang out with and do things with. Beloved wants to get back into his gaming (table top RPGs, with paper, pencils and dice; NOT D&D). If he does, I’d probably go along and play, if only to keep myself from becoming totally a recluse.

I can no longer play the piano. I cannot knit or crochet or do other fine motor crafts for more than the time to do one row of knitting or crochet, or about 20-ish minutes of fine motor work like making chainmaille or jewelry. These are all things I used to do. I can’t talk on the phone comfortably if I have to hold the receiver to my ear for more than 15 or 20 minutes. (Which means when my mother calls, I switch hands a lot.) Even if I were not taking narcotics, I would still be very careful about driving since I have limited range of motion with my neck–you know, turning it left and right. Looking back over my shoulder is almost impossible. With my limitations, I am always afraid that I will have an accident because I cannot react fast enough, or fully enough, to avoid it. Beloved does almost all of the driving. Only on his really bad days do I get behind the wheel–and he helps me watch out for possible dangers.

There’s also the whole loss of concentration and ability to deal with details as well as a certain amount of short term memory loss/lapse. I am easily distracted from whatever I am doing–and just going from the bedroom to the kitchen (about 20 feet) means I can forget what I’ve gone in there for–and cannot recall it, no matter how I try. This is particularly vexing for me, as I used to have nearly photographic memory. Well, my shutter speed is way down, let me tell you.

I’d love to be able-bodied, to do the things I used to do, to do the things I want to do. But that’s not my reality. And I don’t write this all out for you to feel sorry for  me, or to gain your pity. I’m just trying to explain what my life is now, in this moment.

There are good things as well, really! We’ve been going to the beach more often now that the weather has warmed up. We’ve seen pelicans, a seal, a fish that made the mistake of biting onto the bait of the surf fisherman. Lots of dogs, since there’s no prohibition on them being on the beach. We’ve seen a horse and rider enjoying the fun of trotting through the edge of the surf. I’ve even managed to pick up some driftwood and seashells–razor clams and even sand dollars.

Being with Beloved is always fun, even if we’re just doing the parallel play thing, with both of us on our computers and no particular interaction until one of us wants to share a meme or an article. We go out to eat when we can afford it and we enjoy sharing the meals and making our critiques of the food.

I am especially grateful for a healthcare team that works with me to deal with these realities of my disability–my Primary Care Physician, my psychiatrist and my psychologist, the PCP’s nurse (who is a dear!); the front desk staff, and just everyone I’ve come in contact with when I’ve gone in for an appointment.

I enjoy the view out my window. I watch the birds, occasionally get a glimpse of an egret flying by. I watch the trees blow in the wind and I’ve watched the flowers blossom, each according to their time. Rhododendron is a major “thing” out here and there’s lots of it, in different colors. It’s time for hydrangeas now. I’ve also seen a hummingbird. I’d like to put up a feeder for it, but haven’t gotten around to doing what that requires. C’est la vie.

Thanks to Facebook, I am actually in touch with my friends from VA almost more than when I lived there. Daily posts and shared items make my day better.

So I’m reaching the limit of what my hands can take and rather than save this as a draft, I’ll finish it up and post it out. Yes, I have my limits. So does everyone else. My biggest goal right now (behind winning my adjudication hearing) is to find something that I can do for fun, just for me. See, my psychiatrist asked me the other day, “What do you do for fun?” and the first answer (which you should always go with) that popped into my head was “Not a damned thing.” Time to change that. I’ve got several possibilities, just a matter of seeing if I can manage them within my limitations. I want to try watercolor painting and even have a “how to” book to start it with. I’m also trying to do some sketching. Nothing major, just little doodles to get used to drawing again. We’ll see.

So this is where I am, and with the oh so helpful chemicals in my system, not doing as bad as I was a week ago. I’m Kate, and I’m disabled. But I can still enjoy the perfection of each moment as it comes along, whatever comes with it.

Namaste!

A Kinder and More Gentle Life

I never promised any regular posting–which is good since I let all kinds of time slip past me these days. We all agree, Beloved and our two housemates, that time does not move in the same way here as it did in VA. It goes fast and it goes slow and we’re never really sure exactly what time it is. The days are long and short; it seems like we have several days before we have to be somewhere and then suddenly, somehow, another week has passed. So that’s my story and I’m sticking to it.

We are still getting used to the Life Pacifica. We are very gradually losing the frantic and hassled outlook on life. There’s something about living near the ocean that lends itself to a more natural pace. Life in VA was lived under the direct influence of Washington DC, with all of the characteristics of that blighted place. Too many people, too many of them so sure of their superiority, with the attendant arrogance in their attitude when dealing with anyone else. Too much hurry to get to the next thing, no matter what it was. No time for anything that wasn’t tied to the need, the driving urge, to move up the food chain–and the very well defined food chain of the citizenry.

If you make a lot of money, it’s not a bad place to live. If you don’t make a lot of money (in this case, we’re only talking about 50-60,000 dollars income per year. Only $50,000? Might as well be $500,00  or $50 million for those who don’t make it), anyway if you don’t make a lot of money, you’re totally screwed. You have to pay what you can for rent, never mind where you end up living–and then commute to work, which is another soul-searing, humanity killing part of living in the area. It’s not healthy and it’s really not meant to be for humans.

I tell you this so that you’ll understand that after more than 10 years of *that*, it’s taking me a while to let go of old habits and return to living in a better way, a more healthy way. Beloved and I still laugh about “rush hour” here, a daily occurrence that any driver in NoVA would sell his soul to be able to have–it might back traffic up for 2 or 3 extra minutes’ drive time. Not the 2 or 3 extra HOURS a bad day’s commute can give you back there. When we eat out, the wait staff is unfailingly polite and generally kind. There is no rush to get us out of the place, we can sit and talk without disturbing the routine.

I generally end up fumbling something when checking out of the grocery store. The people in line behind me wait patiently, without rude comments or flashing evil looks. And when I apologize, I get the same answer each time: “No worries, it’s okay.” And they MEAN it. They are genuinely willing to wait without letting me know that I have so inconvenienced them that I probably shouldn’t be allowed to even continue breathing.

Have I mentioned that we have a visible homeless population? (I won’t say sizable because I don’t know how many there truly are–but  it seems like a lot because as I tell people, we “don’t have homeless people in Northern Virginia”. Well, we do–but they are shamed, ignored, made to move on and generally pushed by the cops to go away and disappear.) So anyway, even the people who are asking for money are polite and kind about it, and if you tell them you don’t have anything to give them, they thank you and tell you to have a nice day. Not like the people who hang out at the metro stations and call you names if you don’t cough up some change. Not that I really blame them for having that kind of attitude, since the only thing worse than living at the poverty level in NoVA is living IN poverty there.

Money was a major factor for us deciding to come to the West Coast. We knew that there would be other benefits, like organic food and a steadier climate but the costs of living were the big reason to make that big a change. We hoped that it would be a slower and easier way of life but as I said, it’s taking a while to really accept that it is precisely that. I am trying to shed Virginian habits and become a true California Girl. I should remind you, or tell you if I haven’t, that I was conceived just down the coast in Monterey. My first assignment in the AF was also in CA, down way south at March AFB, Riverside — about 45  miles east of L.A. It has been like coming home. There was never any doubt that I belong here, that I will spend the rest of my life here. VA seems like a dream sometimes…

I have been mostly medicated for pain for a month. I still have yet to meet with the Pain Management Team and set up the full plan for dealing with my pain. It’s mostly focused in the degenerative arthritis in my spine. This means I cannot stand or walk for more than about 15-20 minutes at a time without having sciatica and neuropathy. It’s annoying to realize that I am being more active, doing  more–and it’s not seldom-used muscles that are giving me trouble. It’s a part of my body that exercise will not diminish the pain, that I can do much about at all. I wrote in my last blog that I had finally got to see my PCP. Well, she got things rolling for me on several levels. I have new wrist supports; I have seen the therapist and will soon be showing my ability to deal with an electric wheelchair (having determined to be a better match for me than a scooter for mobility assistance); I have had my lady part visit with the Women’s Health specialist at the clinic. I have an appointment for my hands (which hurt and are swollen more mornings than not) and I’m waiting to find out when I can get a new MRI for my back. The MRI and the hand clinic are both in San Francisco, at the central VA medical facility and I will coordinate the appointments so that we only have to drive down once to do them both. I am also waiting for a local appointment to get my eyes checked for the first time in almost 3 years. (I need new glasses…)

It is all progress, especially after losing healthcare insurance coverage before I was able to get into the VA system. And the VA medical care here is WAY better than what I was getting in Virginia. I call my care givers by their first name–which levels the playing field and makes me a part of a healthcare TEAM instead of being low man on the totem pole when it comes to making decisions about my care. The people all seem to be genuinely concerned about the care they are giving and view it as a service to veterans. I did NOT have that opinion of the staff at the Fredericksburg clinic. So anyway, let me update you on my meds, because except for the pain, it all seems to be working well. I am taking Vicodin 5 mg for pain, which is the limit dose because they are so afraid of addiction–and there is a real problem with it, so I understand that. I take Lasix for the swelling in my hands and ankles. I take loratidine for allergies; trazadone for sleep; gabapentin for the neuropathy. I take Venlafexine for depression and Hydroxyizine Pamoate for anxiety. The two psych drugs really do work well. The Hydroxizine used to was an antihistamine, but it’s being prescribed for lots of Vets with PTSD. It’s gentler than the “–zepams” (Valium, Xanax, Clonazepam) and doesn’t seem to have bad side effects. Now you know.

Beloved is also getting his health back in order, thanks to the ACA and expanded Medicaid. He is in physical therapy for his physical ailments, which means he gets to get into a pool kept at 92 degrees and do therapy twice a week; he has adjustments and stim/TENS with heat once a week. He reports that it’s making a difference after only 3 weeks of going. He is also getting his mental health in order, with weekly sessions with the psychologist, as well as two different group therapies, one for anxiety and one for bipolar disorder. He will finally get to see his psychiatrist on April Fool’s Day. No hidden meaning there, I’m sure! Beloved does agree with me that no matter how bad any one day may be, we are truly happy to be here and are content with the decision to move. No regrets…

Odds and ends:

We received a surprise gift of some money from Beloved’s godmother–she died from cancer and while that’s sad, we were glad to receive the bequeathed check. We have used it to get some things that catch us up to pretty much where we had hoped to be before we spent an extra week in the motel and had a rental car for 3 weeks which ate up our savings upon arrival here. Beloved has been very, very sweet, getting things to make the kitchen easier for me to work in and for him to help me with meal preparation. The single biggest improvement for us has been the appearance of new computers for both of us. Our old machines were ummm well, old. Mine was almost 7 years old, which in technology is practically another era. So we’re trying to get used to Windows 8 — after 4 years with an HTC Evo smartphone, I find it’s not that difficult. I am just not real thrilled at how we are moving more and more towards icons instead of words. Indicates a greater level of illiteracy in the general population, never a good thing.

We’re trying to make it to HUUF (the local Unitarian Universalists) more often. Went this week to find out that Starhawk (The author of “The Spiral Dance” and a Pagan celebrity) was going to lead OUR fellowship in the Spring Equinox ritual. As I said on Facebook, I knew we lived in a cool place; I didn’t realize it was that cool!

The weather has turned beautiful. The days are just cool enough to merit a light jacket, but sunny and it’s great to be out of doors. We live in a teeny tiny little village that has no lights so the night sky is amazing and awe-inspiring. I can see the moon from my window (when it’s out). It was raining this morning, but that’s cleared off and the sun is out. We’ll have temperatures between 45 and 60 degrees all week. This steadiness and constancy in the temperature means that when the weather changes, it’s not the sword-stabbing pain in the long bones of my legs like the extreme and sudden changes in VA caused. I can live with this!

I am both amused and grateful for how much organic food the local Costco carries. We get our apples there (Gala and Fuji); coconut oil is less than $25 for a gallon of it. We’ve discovered KettlePop organic kettle popcorn and are working on the 4th bag I’ve bought (A 20 oz bag, which for popcorn is a BIG bag!) I bought a case of Amy’s Organic (Vegan) chili–added grass fed pastured beef to it, of course. Organic produce, meat, snacks, cereals and a lot of other things that people who eat organic will look for, like chia seed, hemp oil, and etc. They have an amazingly wonderful organic vanilla ice cream from the local dairy (Humboldt Dairy brand) and it comes 2 half gallons in a box. NOM.

Beloved has two pans that look similar–they are both heavy cast aluminum, and the overall shape is almost square. The pan itself is what is different–it looks like a maze piece, with a “W” (or “M”) shape making the pan what it is called: The “All Edges” pan. We have one for brownies and one that is slightly larger and deeper for lasagna. I can report that they work very well, especially for the lasagna–they came with matching spatulas that fit precisely in the “tracks” of the pan and each piece you lift out is a work of art. Well, mine is anyways because I make kickass lasagna. Just saying. We’re having a conglomeration pasta dish today–left over meat sauce, with ricotta and mozerella cheeses mixed in, some sliced chicken sausage and of course, fresh grated Parmesan (both mixed in as well as laid on top). Baked for 50 minutes and then run it under the broiler to toast up the aforementioned Parm cheese.

We have the super duper bread maker from Breville, home of our super duper convection oven. It will of course make bread, but it will also make jams/jellies. I am looking forward to trying it out–and we’re going to have to, soon because we’re running out of bread and I’m not buying any more. If I can only restrain myself from eating it hot out of the maker, with butter dripping down my chin. Probably not…

The continued political and religious assaults on women is starting to really annoy me. It’s not about abortion or birth control; it’s about relegating half of our population down into second class citizenship. And once you can establish a lower class, you can throw anyone who isn’t “your type” down there: gays, immigrants, people of color. I like the meme that defines homophobia as “the fear that gay men will treat you the way that you treat women”. (Although frankly, you’re just not that cute.) Now I have to wonder if that concept needs to be expanded upon. Are men actively seeking to subjugate, limit, entrap and otherwise deny women equal rights because they’re afraid that if we women get those rights, we’ll treat them the way they’ve always treated us? If we can make our own choices for reproduction (or the prevention thereof), we will become as sexually indiscriminate and promiscuous as so many men are? Will we redefine ourselves, seeking our own kind of beauty and not pandering to the trophy status ideal? Will we be able to pursue a lucrative career, possibly shutting them out of promotion opportunities based on our superior abilities (and not on how well we can suck dick, as you all seem to think any successful woman MUST do)? Will we refuse to take on other people’s ideas, including yours, of what makes us women? Will we decide that being an unpaid housecleaner/cook/maid/nanny/sex object is no longer our dream? Will we stop needing men?

I can only hope so. And there’s nothing wrong in NOT needing men. The shame and the wrongdoing come from the necessity to “have a man” in order to be considered a “real woman”. More and more females are choosing to pursue their dreams–and their dreams don’t include that infamous “Mrs.” degree. I kinda suspect that this is the part that makes those men seeking to control women go crazy. I’m not even going to ask why a man wants to control a woman. No, the deeper and more meaningful question is this: What is about you, as a man, that makes you so afraid of females that you must ensure their total enslavement as necessary for civilization to go on? Are you afraid that women will take over and treat you in kind? And the gays? Will they do that too? And anyone who is “not you or your type” is a threat to this part of you.

As with the rape culture (dear gods, why did we even have to come up with this term?), the onus must be placed on the correct and originating source in order to actually fix the problem. In the rape culture, we HAVE to teach our females to protect themselves, but we NEED to teach males to NOT rape. That simple. The force that stops a rape shouldn’t have to be the victim. The perpetrator should never commit the crime. Likewise, in the war on women, we women are only reacting to an offensive (in every sense of the word) attack. We either have to so utterly triumph, so completely overcome the attack that the offender is smashed and defeated, unable to retaliate or launch another attack…or this will never end. Not from our side of it. The males who are firing the volleys, suggesting and enacting legislation to control women (and gays, and immigrants and etc) are the only ones who can end this war without the utter destruction continued attacks will eventually bring about.

What is it within you, Rand Paul? Paul Ryan? What is it within all of you men, elected representatives to your state or Federal governments that requires these outrageous and frankly insane attacks against 50% of your constituency? What is it within you, you pastors and ministers, that makes you act in a way that will drive someone, ANYONE, away from the Christian message of love and forgiveness for all? Why do you take Paul’s words (“A woman should learn in silence, don’t let women speak from the pulpit”) over the words of Jesus who instructs his followers to “love one another as I have loved you”?

And can we please get this settled before we blow up our own country with this ludicrous and dangerous divisiveness?

So I rambled off topic, sort of. I just ramble. Going to halt this one here so I’m not competing with “Gone With the Wind” or “War and Peace” for length. Life is good, life is sweet, even with disabilities and I hope your life is blessed and happy and peaceful. Namaste!

What Color Wetsuit Should I Get?

EverythingYouNeed

California diary, day 95: After 91 days, one unnecessary trip to the clinic and several phone calls, I FINALLY got to meet my new primary care nurse.  I was originally scheduled to be seen on the day after Christmas.  Which was cancelled without telling me, so I showed up for the appointment and had to turn around and go home.  Next attempted date of take-off?  January 22, the earliest window with a flight path for me.  Also cancelled.  Third time’s a charm, so they say and February 4th was mine.

So as a literary device and to get everyone updated on what happened while I was waiting, let’s step back into time and talk about January, since I’ve already told you about December.  (More Adventures and Updates from CA)

Beloved and I had a quiet dinner at the local Indian restaurant for New Year’s Eve.  Great food and then back home, when the ball dropped in our time zone, we had bubbly drinks, kissed and welcomed in 2014.  A week later, our friends from VA arrived after their cross-country trek and now we’re all living together.

Oh stop thinking those naughty thoughts!  It was always our intention to share living space with each other.  Like trouble, bills shared are bills halved.  When the original plan was formulated, we had no idea that the two of us, the path blazers and first away team (no red shirts, thank gods) would have to choose a place that is at best suited for two rather than four.  So it’s been an interesting month, getting the four of us settled into limited space within the odd layout of the apartment.  Compromise and a certain Japanese ability to politely ignore the genuine lack of real privacy are both being used as well as tested and adjusted to being used again.

Yes, it’s cramped and we sort of have to step over each other.  We go though their room to get to the kitchen; they come through ours to get to the bathroom.  Hmm bathroom; yeah, one toilet and one shower means a certain amount of planning for health and hygiene.  Ear plugs are de rigeur as we each have our own technology–and preferred websites.  With the minimalist approach to kitchen items, a favorite  dish or cup is often…in use by someone else.

On the other hand, there are extra hands to help with the things we either cannot do or have to plan carefully to do, like trash removal and washing the dishes.  Meals at home are much easier and more usual with help in the preparing and cooking of same.  Grocery shopping is shared, which also alleviates some of the anxiety for me, particularly when I’m having a bad day.

It’s also nice to have a concrete reason (so to speak) to at least make the effort to be more social, to make the efforts of conversation and discussion with someone besides each other.  It’s also been a benefit to them as they arrived without employment–and you cannot count on getting your dream job the first place you apply for.  (Or even the 10th, 27th or 136th.)  They have had the benefit of a place to live and food to eat without having to go into panic mode about the basic human needs.  (They also arrived with a good cushion of savings, the result of working 70 or so hours per week for the prior 3-4 months.)

So let’s segue into my doctor’s appointment.  Remember that my first VA PCP had removed me (cold turkey) from Vicodin last May?  And I have had to fight, scream and threaten (almost) to get anything resembling a regular amount of it since then?  And when I got here, I needed to have an appointment within about 4-6 weeks in order to have all medications as prescribed, without running out of them?  So it’s not a shock to anyone when I say that of course I ran out of medications?

Ergo, my condition as of 10 am yesterday morning was something along these lines: no Vicodin for most of January; no Gabapentin (Neurontin) for about 2 weeks.  That means no prescription pain medications for long enough to make me bitchy.  (Sorry, housemates and my mate.)  Instead, I was taking 4 Alleve per day.  And every medical person (or medically informed person) reading this just flinched.  Naproxen sodium is hell on your stomach and most doctors prefer that you do NOT use it as a maintenance drug.  I know this, but figure 4 of them is better than 12 to 16 Tylenol in the same time period.  (Which frankly does not stop my pain.  And I am allergic to ibuprofen (Advil) or I’d have to take about 6-8 of those.)

Therefore, I was unmedicated for pain.  In plain words, I hurt like hell, with knives being stabbed into my back (the arthritis) and general body aches and tender pressure points (all of them for the fibro test) hurting and making themselves heard.  I was anxious and stressed because I figured I had a battle on my hands to get back the pain meds I had used (been using for over 2 years) that worked.  (“Worked” being the most important word here; I tried Celebrex, a fairly hardcore pain med which did very little for me.  I’ve done all the OTC stuff and have had codeine, no effect and Darvocet, no longer made nor distributed.  Limits my choices.)

As with the psychiatrist and social worker, my healthcare provider is called by her first name.  I would suggest that everyone go to that method of interaction…because it puts the patient on a more equal level with the care provider.  Having to call the physician “Dr. Jekell” while s/he calls you “Fred” imposes a hierarchy of perceived authority and imbues the doctor with a certain godlike power.  And besides, my name’s not Fred.

It’s my body, it’s my life.  I will have at the VERY least a 50% say in what happens to both.  I view my healthcare providers for both my mental health and my physical health as working FOR me, and WITH me, to assure the very best, most appropriate plan of pain management, symptom alleviation or cure and general overall well being for ME.  This means that I have the final say in what I will (or will NOT) take from the great wide world of pharmacopoeia and what course of treatment or therapy I can and will follow.  I listen to the expert’s advice; I have the good fortune of having been in healthcare, so I have some experience in the field of my own to use as part of the information of my decision-making.  I do my own research about the healthcare I receive, to include the medications I am on.  And I don’t just look at one website to dismiss or verify it; it may be a shock to some of you, but not everything on the Interwebs is true or real.

Now back to the original story: it’s 10 am (yesterday) and I’m sitting in the Eureka VA clinic.  Alone because Beloved had his own doctor appointment at the same time.  Stressed and anxious because I’m alone and having to do this without an extra set of ears and eyes to help me; stressed and anxious because I fear having to battle for my own health and well being–and it’s really important to me to have a life as free from pain as I possibly can, within the limits of modern drugs.  (Herbal, natural and “old time” remedies are still possible for me but as a part of the Federal Government, the Veterans Administration cannot give me some leaves to chew on and a chunk of medicinal incense to burn.  Or even more plainly than that: if marijuana would replace every single one of the pills I’m on, I would consume only that–but I will not get it from the VA until such time as pot is legalized at a national level.)

To my credit (and my new anti-anxiety med), I am NOT talking like Russell Brand.  And once my appointment started, things went…amazingly well.  The nurse did took my vitals, started my (new and local) medical file.  A little more waiting, and then the nurse (I think she’s actually a nurse practitioner) came herself to escort me back to the treatment room.  She and I had a genuine conversation (we both got to speak!) about my medications.  She had already pulled up my records and taken some notes about what pills I was on.  (Unlike Beloved’s new doctor, who was handed HIS information in hard copy; Beloved is OCD and has enough medical stuff–history, med list, etc–that he writes it all down and gives it to EVERY health care provider he sees.  She didn’t even look at it but then she wanted him to answer questions that would have been completely covered by 5 minutes of reading those papers.  We are probably NOT staying with her once we can find someone else, hopefully recommended by a real person who loves their doctor and is willing to share.)

After my PCP and I talked about medications, I also told her about my other concerns, such as an eye exam and that desired mobility scooter.  We discussed everything and then, as the end to my appointment, she did the “doctor” thing of listening to my heart and lungs and looking into my ears and eyes.  You know, the basic check up stuff.  And I walked out of her treatment room…with stress and anxiety left behind.

Here’s why: nurse or not, she can (and did) write new scrips for every one of my medications.  Including the pain meds.  She also gave me immediate supplies of those pain meds to hold me until all the drugs can be sent from the central dispensary in San Francisco–takes it about a week to get to me.  The VA clinic here has a small pharmacy, with a limited inventory but they had the Gabapentin.  They do NOT carry and cannot give out Vicodin.  However, she wrote a scrip that the VA clinic pharmacy faxed across the street to the CVS where I went to pick it up (at no cost, of course).

We had agreed on the amount of Vicodin I would be given–which is 2 per day, with a bit of spare added in as an emergency 3rd pill on those days when the pain is that terrible and that prolonged that 2 just don’t cut it.  No fuss, no argument from her, no “I am not comfortable giving you that” like I had gotten from the VA doctor in VA.

Relief, blessed and prayed for relief of my pain.  Lack of anxiety because I can request refills or modifications to those pain pills as I need or want them.  Pretty much an immediate mood changer, to know that if I hurt, I have medication that works and I can take to stop the hurting.  (Or to be honest, stop it as much as it is ever stopped.  There is still a certain level of ache and pain, always has been.  No idea if pot, massage therapy, acupuncture or any other alternative therapy will truly and completely remove all the pain.  Not sure I’d know what to do with myself if it did.)

But wait, there’s more!

I had to see the clinic vampires…4 vials of blood and a pee in the cup to check pretty much everything of basic functioning, as well as test the thyroid (an all too common problem in women) and take a look at my blood sugar levels (and make sure that I’m not peeing out protein, a bad thing).

I have been given referrals for:
1.  Having my eyes checked for the first time in 2 years.  My new anti-anxiety med also causes blurry vision, so I spend most of my life with everything in a soft focus anyway.  Will probably end up with new glasses.
2.  Meeting with the pain management team to assess my pain and come up with my own, personalized pain management course of action.  We’ll start this as a video conference; if that doesn’t get the results we want, I’ll end up having to go down to Frisco to the central VA facility there.
3. Getting new parts for my CPAP machine.  Another video conference, this time with the “Chest” team, who apparently handles things related to breathing.  I hopefully will not need a new sleep study or it’s down to Frisco for that as well.
4.  A mobility scooter.  At least, she’s requesting it for me.  I will find out if it’s been approved…whenever they call me and tell me to come pick it up, or give me a voucher and I go pick it out at the local medical supply store.  However it works, so long as it works.  I’ll figure out how to get it in and out of the back of the van.  (And probably ask if the VA helps to pay for any modification to our vehicle required to make that possible.  Thank the gods we have this van, the perfect car for us that we didn’t know to specifically ask for.)
5.  A new medication for my GERD.  I have been taking ranitidine, which just doesn’t deal with all of my stomach issues adequately.  I am back on the med I took when I was first diagnosed with reflux, that little purple pill Prilosec.  Except that my bottle says “omeprazole” and the pills are pink and white.

Can you imagine how light I felt, leaving there yesterday?  Can you imagine how happy I feel today, having had my Vicodin and knowing that if I still hurt or the pain increases again, I can take another one and not have to meter them out because I’ll run out before I can get more?  That small, simple white capsule allows me to let go of the myopic view of life, focused through a lens of pain.  It allows me to refocus on other things.  And I’m sitting here, thinking about all the things I want to do now.  And if I’m not careful, I’ll end up hurting worse by doing too much all at once.  Sigh.

Hope and fear are so very closely related…one leads to a positive ending and the other a negative, but the general feeling is about the same until the results are known.  I was so afraid that I had to continue what had been an uphill, unwin-able battle to deal with my fibro and all of its attendant issues.  I was terrified that I would have to continue living in nearly unbearable pain, which has makes it very hard to have anything resembling a “normal” life–including personal hygiene and activities of daily living.  It was nigh unto impossible to feel hopeful, with the expectation of a good outcome given the prior experiences I have had with the VA health system.

All I can tell you is that while they may all be under that vast umbrella called the VA, the two clinics could not be more disparate.  And I absolutely prefer this one; ALL of the staff is genuinely kind, pleasant and trying to do all within their power to help.  They seem to view their jobs as happy and willing service to the veterans in this community and NOT as metering out a few paltry pills from their WWII stock to the “takers” who are trying to get all they can from the teat of “Uncle Sugar” (like they did in VA; this attitude difference occurs in almost everything *here* versus almost everything *there*, not just at the VA).  They work for and with the veterans to ensure the best possible care for each patient, to help the vet have the best quality of life within the limits of their health issues, both mental and physical.

And I have never been more glad that this (unexpected) benefit of my time in the Air Force was worth the effort of applying for it and continuing to use it.  Without it, I would have had no pain medications for almost a year now.  None at all.  Zip, nil, naught, zero.  They have given me all the medications I need; I have a new blood pressure cuff (to replace one in a box somewhere in the storage locker or the in-laws house in VA).  If my blood test does turn up diabetes, they will give me all the paraphernalia for that.  They will provide me with a scooter if I qualify–and I both understand and approve of a qualification requirement, as there is only just so much money in this pot and it should be used according to need.  While mine is great to me, how much greater is the need of a soldier returning from war without legs?  If there’s only enough money for one scooter, give it to the soldier.  I realize that this is a little simplistic, but you get what I’m trying to say?

Instead of having limitations set by pain and the fear of more pain after exertion, I can focus on doing the things I want and need to do.  I will try to pace myself so that I don’t end up in more pain through my stubbornness or asserted ignorance of the effort required.  I may very well end up making a list of all that I want to do and then categorizing and prioritizing it by what can be done now, with the small energy I have–and what will have to wait until later, when I have more days in a row without that insistent, all-consuming pain, riding on my back like a leech and blocking any chance of doing something without it hurting.

What will I do?  I want to clean up our room.  Like, move things around, sweeping the floor and then mopping it.  I want to rearrange my desk and the Pelican cases I use as a dresser.  I want to stand and cook an entire fabulous meal without having to stop in the middle–or hand off to my sous chef to complete.  I want to explore the local thrift stores, which requires walking and lots of it.  (Or a scooter, carefully driven through the aisles.)  I want to go to the beach and look for stones and shells.  (Probably NOT on a scooter, so this one requires some time to work back up to being able to walk longer than 5-10 minutes and especially on a surface that is not stable nor firm.)  I want to be able to go to HUUF every week because the prior days have not sapped all energy and ability to get around out of me.

Nothing particularly earth-shattering or even particularly requiring of tremendous effort.  Just the small moments of life that we each live, but having them without the terrible pressure of untreated pain.  And for the first time in almost a year, I feel…hopeful.  I have more faith in a positive outcome because I finally have healthcare providers that are providing my health CARE.  I did not move to CA to spend all my life inside the four walls of my home.  We did a great deal of that in VA and the desire to get out, to be outside, to be out among other people, was a prime consideration in the decision to move.

Now I have the ability to make that decision real.  And Beloved’s doctor’s appointment went just as swimmingly as mine.  His was for the psychologist and was very rewarding for him.  There will be support group meetings as well as individual counseling; they will help him find more coping mechanisms, as well as alternate behaviors for handling the effects of his mental disease.  The doctor gave him a more precise, more detailed label for his disability–and the better you can define something, the greater the chance you have of finding how to accommodate the reality of that disability.

Accommodate the reality of the disability.  That’s the only way, really, to live a life that has limitations beyond the norm.  I’ll go out on a limb here and say that, truly and universally, we ALL need to live in a way that accommodates the reality (the REAL reality) of our lives, whether we have a disability or not.  How many people you know are unhappy or angry because their lives are one reality, but their minds (and emotions) insist upon another?

Beloved and I are slowly, with the help of other generous, knowledgeable and caring people, gathering up the tools to accommodate our reality.  And we shall eventually, perhaps sooner than I can imagine, have a life that is peaceful, balanced and (dare I say it?) normal.  HA–I don’t want to be normal.  But I would like a life that allows me to do the things I want to do, the things I need to do, without using superhuman effort–and failing–to ignore the reality of my disability unaided.

There is a life outside of fibromyalgia’s limits.  There is a life beyond having BiPolar type I, Category B with OCD–and stress anxiety disorders for both of us.  What does this life have?  Anything I want, as long as I remember, understand and accept the limitations of my own health, our own health.

Can I order my wet suit and board now?

Japanese Minimalism in a Consumerist World

We did it!  We actually, honest to the gods, did it.  Through terror and anxiety, with the help of friends and family…we packed a few boxes that my father-in-law is going to send to us, but the rest of the household stuff either went to someone else’s house, to the Fauquier County thrift store, or into the trash.  I don’t even want to think of the dollar value of the things that were straight out trashed.  It’s over and done with, I don’t know what exactly it was and I won’t ever see it again, so no need to think about it or worry over it.  I didn’t even have to clean the house, as F-i-law also hired someone to help us who managed to clean it up for me.

Things were so off schedule that we went to the airport in the clothes we had been wearing for about 3 days as we had packed and pitched and so on–there was no time to shower or put on traveling clothes.  Oh well.  We got to the airport and through TSA (might I suggest going in a a wheelchair, as you move to the head of the line?) and were at the gate with about 30 minutes to spare before the scheduled loading time.  You note that I said “SCHEDULED” loading time.  The plane was delayed 3 hours.  So we sat and tried to decompress from the high pressures of the month of preparation for that moment.

And as another note, I will never fly anything but First Class again.  Should I ever fly anywhere again.  Before we’re even off the ground, the First Class stewardesses are handing out drinks–and I mean DRINKS.  We had gin and tonics.  Once we were off the ground, it was more drinks, warmed mixed nuts and then dinner.  (Very nice, reasonably good food)  Then more drinks if you wanted and the TV was free, so we could watch movies or whatever.  Mr. Technology watched the live feed of our flight, sort of like watching the GPS when you’re driving.

We arrived in Sacramento to find the nice young men with the wheelchairs at the airplane DOOR.  They took us through the terminal, got our bags and we loaded up into the hotel shuttle.  Off to the hotel, which was very nice, thanks to our friend E who had provided it for us.  SLEEP, blessed sleep.  Up and out in the morning, back over to the airport to pick up the rental car and up the state we drove.

Got to Eureka just in time for my beloved to keep his promise: we stood on the beach and watched the sun set into the ocean.  It was cold and windy, so no toesies in the water.  And mostly, I just stood there and cried.  If I had actually been able to put my toes in the water, I think the rest of me would have followed.  Then off to dinner at the Cambodian place I had found during my research; very good food, interesting combination of Thai, Cambodian and Vietnamese.

And then began our learning about Eureka.  When I had been on Craig’s List, looking at cars and rentals, it was before the plague of locusts had arrived, in the form of the HSU students, who had taken every possible rental and all the cheap (but drive-able) cars.  It took longer than we had hoped (and budgeted for) to find a place to live–but here we are, actually about 4 miles south of Eureka, in Fields Landing.  We had to settle for an upstairs apartment–but we have also discovered that the stairs here are built lower in rise–about 4-5 inches–instead of the 7 inches in VA.  So there’s more of them, but you don’t have to do a high step to climb them.

So…you come up the stairs, and turn to the right to our apartment.  You walk into the kitchen (which has brand new stove and refrigerator) and then it’s a right hand turn through what is ostensibly the living room, but that is our bedroom, because it’s then another right hand turn into the largest room of the apartment, which we are using as living space.  The bathroom is off of this room, with only a walk-in shower, no tub.  Oh well.  The room itself has two windows, which face west–and if I look carefully, I can see the bay.  So water is only about 3 blocks away.

The apartment has been just redone, repainted and repaired—and like I said, new appliances.  We have a year’s lease but will then go month to month.  So we have time to look around and find a ground floor place, maybe a house even.  The stove is gas, as is the heat.  People have been telling us that sometimes the PG&E (gas and electric combined utility) bill is “high”–as much as $50 or $60 dollars per month.  We fall out laughing, since we were paying about an average of $180 per month.  I think we can handle this.

We explored the natural food store I had found online–it’s okay, a bit disappointing and not quite what I had hoped–but nearby is the North Coast Co-op and I suspect that we will do the majority of our shopping there.  We always have Costco–and this one nearly specializes in organic foods, because of the high demand for them here.

We’ve done our bit to get into the various helpful systems here–been to Social Services, got me updated in the VA health system and talked to their extra services (none of which we are eligible for as long as my LTD will hold out).  We have also had to go to Verizon for our phones since our (old) Sprint phones had exactly 0% coverage in the new place.  Verizon has a new tower on the hill just behind our apartment.

Since we didn’t bring furniture, we’re having to add it as we can.  Thanks to the generosity of friends and family, we were able to buy the actual bed we wanted instead of the interim we had planned–and so we’re sleeping great.  We bought some fold-down tables and got me a folding chair from Costco–and figure that this will work for the long term as well.

We met the neighbors from the house next door–seems they got a piece of mail for us, and coincidences abound when they told us that they used to live in this apartment.  They have been very informative and friendly, so we’ve already got someone to hang out with!  They have given us a chair that they were getting rid of that so Beloved doesn’t have to sit on a suitcase or lay on the bed to use his computer.

We’ve also met the man who lives in the apartment across the hall–a student at the College of the Redwoods, but an older man.  He’s in the middle of finals week, so we’re only catching glimpses of him for now.

Everyone here is kind, polite and as helpful as they can be.  No matter if it’s someone on the phone, at the store, or in a restaurant, even just on the street.  There is definitely a slower pace of life here–and based on the people we’ve seen, this is the Bohemian/tie-dye capital of the US.  Lots of dreadlocks, even (or especially) on the white people.  Lots of flannel pajama bottoms instead of pants (on the college students, I think).

The town itself is like stepping back into the 1950’s, 60’s and 70’s.  Victorian homes, Craftsman style, Cape Cods…and things that look like the slave runs on plantations–all in the same block.  And there’s no “good” part of town versus a “bad” part of town.  It all sort of runs together.  And there’s a lot of dichotomy here: tech savvy people, listening to iPods and using tablets, but most restaurants do not have a website or online menu.  And the working people (waiters/waitresses, store clerks, etc) wear…almost anything, a lot of gauged ears and piercings and tattoos–but are some of the most professional people I’ve met.  And they are more than willing to go the extra steps to get you what you want, including ordering items for the store that doesn’t currently carry that thing.

The kindness and generosity to the veteran population is overwhelming to me.  I am not used to it, but once people find out that I am a vet, we get discounts and stuff that I wouldn’t have thought of asking for.  Apparently there’s a sufficient population of veterans that it’s just a matter of habit here in Eureka.

I told people before we moved that if it only turned out to be 50% of as wonderful as we hoped, it would still be better than staying in VA.  Well, that’s turning out to be quite true.  There are some down sides.

The un-considered and un-planned delay in finding housing really ate into our budget.  Our last major thing is a car, and we may have to do the “$199 down, and a million dollars a month for the rest of your life” plan to get one.  Ok, not quite that bad, but you know what I mean.  And we MUST have a car, and one that my dear Beloved will both fit into and be comfortable driving.  We are hoping for a van, fingers crossed.

As we drive around, and as we talk to more locals, we are discovering just how incredibly economically depressed this area is.  The jobless rate was not something I factored in; we aren’t going to need/have a job, so I didn’t really look at the unemployment rate.  And there are jobs to be had, but there is a large and visible homeless population.  (I’m willing to bet that it’s really no bigger in relation to the general population than in VA, only that in VA, we sneer at them and either render them invisible because we will not see them, or we shame them into trying to appear as “normal” as possible.  That’s not done here.)  There is an ongoing fight against meth and meth makers / dealers / users.  In fact, the house on the corner across from us is boarded up–used to be a meth house, and very active all the time.  BUT they got them out of here.  Oh, I know, to go somewhere else, but at least it’s not on my front doorstep now.

Another sign of the general “poorness” of the area is all the thrift stores–and there are a lot of them.  The “stylish” ones are up near the college (HSU) and get their stuff from the kids when they leave, so we’ve already been told that the time to hit those is just before the start of the semester, when they are full and ready for the students to descend, or just after the end of the term, when the students dump all the stuff they’re not taking with them.  We had not realized just how much of an impact that college has on all of the little towns around it–and HSU is actually about 5 miles north of Eureka, in Arcata.

Most of the restaurants are small, family run businesses.  So far, we’ve had some really good meals, only one was “eh” and only one was “never going back”–and that one was for a weird reason–the food was fresh, well cooked and beautifully presented, but…all the sauces came out of a bottle.  And for Chinese food?  That’s a sin.  We’ve already found a better one, with homemade sauces that are off the hook.  There are chain restaurants–mostly fast food, but there is an Appleby’s in town.

Eureka actually has TWO malls; there is a KMart, WalMart and a Target.  I, however, have already picked out about 27 things I want from the fair trade section (non-food items) in the Co-op.  Between Costco and the Co-op, I think I can manage most of our shopping.  Clothes…probably from online, until I am able to actually take the time to wander through the thrift stores and find all the Bohemian clothes I’ve wanted for years and couldn’t get…either because work wouldn’t let me or because I was used to was married to a very conservative, conventional man who would not have liked it.  The only thing Beloved has said is that he literally cannot stand tie-dye as it gives him a headache.  Patterns and patchwork don’t, so…it’s the gypsy life for me.

It’s interesting to see just how easy it is to live without all that stuff we used to have.  And that the desire to replace it has not surfaced.  There are some things we will need to get–cleaning products and the tools to use them (dust mop, etc).  We will be replacing the convection oven with a (slightly bigger and better) one because we used that a lot.  And we want a juicer, to get more of our vegetables in as close to nature as we can instead of taking a lot of supplements.  But generally, we aren’t going to buy a lot of “stuff”–and I don’t think either of us misses it.

Having to bring it up a flight of stairs adds another item on the checklist of “how necessary is this” so we can, I hope, live in the minimalist way we wanted when we chose to move and not return to being a candidate for “Hoarders”.  We look forward to spending time OUT of the house, which we were not doing in VA.  There’s a lot going on here: the beach, the coffee houses, and yes, the gaming.  We’ve been to North Coast Roleplaying and talked to the owner–who indicated a LARGE community of tabletop game players, including Pathfinders and ShadowRun.

So from this particular vantage point, I would say that we were right to move.  It has had unexpected events, both good and bad, as all things do.  Will it all be sunshine and rainbows?  I doubt it.  Will it be better than where we were, both physically and mentally?  Absolutely.  And we have already gone to one service at the local UU fellowship–and were completely overwhelmed by them.  They made a point of telling us way more than I can absorb about activities–in fact, we’re eating lunch with them at their after service “Soup and Salad” (although more soup because it’s a bit chilly) lunch that benefits a local charity tomorrow.  And we get to “sit at the captain’s table” which was a specific invitation to sit with the (new) minister.

Physically, we hope that the organic food and cleaner environment will help, as well as any benefits we might find from medicinal pot (still working on that one).  Mentally, the pace of life is slower, the worries and anxieties of life exist but not at the heightened levels of living near DC and we can handle the more gradual increase in costs of living as it is so much lower to begin with.  Spiritually, I have the ocean in front of me and Beloved needs only to turn to look behind us to see the mountains; these two areas are the most important ones to us individually and to find them in such close proximity that we are both able to be near what matters to us is life-saving and easing to the mind and spirit.  Having HUUF as sacred space only adds to that.  We are also able to be more open about our paths as there is not the ummmm abundant Christian/fundamental/Bible-thumping/ everyone else is wrong population as there was in VA.

Do we miss our families and friends from back East?  Of course, and that’s why the gods invented the Interwebs, Skype and cell phones.  And, in this case, my blog.  Our door is always open to those who want to come see us; there is always room around my table to feed anyone who shows up.  Will this save OUR lives, keep us sane (help maintain what little sanity we actually have, haha) and give us a better way of life that we can afford on a very fixed income?  ABSOLUTELY.

It’s not all that I (or we) thought it would be.  It’s more and it’s less.  Same as the rest of real life.

Namaste!