Living in an Azure Haze

It’s been a while since I posted about what’s going on in my life, so let’s catch up.

I have joined the Communications Council for the local VA Clinic; we deal with the newsletter and the Townhall meetings. I take the minutes at the meetings and I set up the newsletter, adding the new content and etc before it goes to the printer. I offered to do the newsletter because it’s something I can do at home, in my own time–and it’s something I enjoy doing. I have done newsletters before and with Microsoft Publisher, it’s very easy. Since there are other veterans on the Council, everyone understands those days when I just cannot make the meeting.

I have also had a lot of diagnostic referrals–I’ve had a bone density scan done (thinning of the bones, but not quite osteoporosis). I had a chemical stress test for my heart, which looked normal. I had my two umbilical hernias repaired and in the course of the consult, pre-surgery stuff and so on with the surgeon, he has ordered an ultrasound of my legs to make sure there are no deep vein thrombosis. I also have compression stockings to wear, to help with the circulation in my legs and feet. I’ve been telling my doctor that the blood in my legs is black–and that my legs swell so badly I can make deep impressions that hang around for several minutes. None of that is good. The stockings help, but I will be interested to see what the ultrasound shows.

I have also gotten a hospital bed, which quite frankly, I have wanted for a long time. I have acid reflux, so I have to sleep with my head elevated…and those swollen legs also need to be elevated. And you can only do just so much with pillows. I am sleeping fantastically! It also makes for a pleasant way to watch movies or play video games, since I can sit up straight enough to do so.

Our weather hasn’t quite made up its mind to be spring-like. It’s been raining, a lot, and the days it doesn’t rain tend to be overcast. That does not help with the state of mind. I’ve had a change in my medications (we’ve increased the Cymbalta) and a concurrent decrease in my anti-depressant (Welbutrin). I had to titrate off it slowly and now that I’ve been off of it long enough for it to be completely out of my system…I’m completely “blah”. I don’t want to do anything, I can’t focus and everything is seen through a dark blue fog. It’s not quite the depths of black despair and complete lack of function…it’s a bit lighter than that, but still a dark enough color that I have a terrible time getting anything done. I see my psychiatrist in a couple of weeks and we’ll talk about my going back on the Welbutrin or on some other anti-depressant. But I need something more than I’m taking, that’s for sure.

My one constant activity is that I am coloring. I have 3-4 “adult” coloring books and I am slowly but surely working my way through them. I was given a box of 50 markers (so many color choices) and they are beginning to run out of ink. I also have crayons and watercolors, so there’s some mixed media work going on. I watch something on Netflix and color, probably 2-4 hours each day. Imagine what I could get done if I had the energy to do something worthwhile like clean house, with that amount of time. It’s a fairly mindless activity: stay inside the lines and make the color arrangement interesting.

I’m also back into playing “Star Wars: The Old Republic” online. I have actually got a level 65 (highest level possible) character, run up from the starting level 1. Major accomplishment! Too bad it doesn’t pay… I have a stable of about 12-14 characters, various job skills, most of them Sith (Empire) that I can play. Talking to my Beloved about this last night, I realized that I prefer to play the “evil” side because it’s more interesting. The characters seem more real, as opposed to the Jedi side, where there is never self interest or greed…there is no passion, there is only peace. These characters just don’t seem like real people, don’t act like a human being and I get bored doing only the “right thing”. I have actually created and am working with a “Dark Jedi”–which is someone on the “right” side who does “bad” things. MUCH more interesting and I look forward to finding out just how far this can go.

On the whole, life goes on much as it has. Nothing terrible, some good (out of the ordinary) stuff… The weather affects both of us, and I am an empath, so I’m not sure how much of the “blahs” is really mine and how much is what I’m picking up off the hubby, who broadcasts. He has started running his own D&D game (he’s the Game Master, or Dungeon Master, depending on the player’s experience with D&D). He put an enormous amount of time and effort getting it all set up and now he has about 5 players that meet with him on Friday evenings to kill things and gather booty. This is something he’s talked about doing since I met him (6 years ago) and I’m very glad that he is finally able to see it happen.

So that’s about it for me. Nothing earth-shaking going on…which I am thankful for. Now if I can just adjust the dark blue up to at least azure…I’d be happier (really!).

 

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My Grandmother, Pauline Baker Foote, 1914 -1992

Today is my grandmother’s birthday. She would be 102 years old. She died in October, 1992 at the age of 78. It’s been 24 years since then. I miss her as if it were yesterday.

Grief never really goes away. You learn to live with it, you learn that it really won’t kill you, you learn to put it away into a tiny corner of your heart. But then something triggers a memory and the grief comes galloping out, as if it had never been there before. This sudden swell of grief can make you staggered, make you cry, make you angry at a Universe that took someone away from you.

My grandmother’s name was Pauline. Nobody called her that. To most of her friends, she was “Polly”. To a select group of longtime friends, she was “Bunny”. (That’s because my grandfather called her his “Honey Bunny”…and it stuck.) To me, she was “Grandmom”…there is no greater way to name someone like her: Grand Mom.

Without going into the gory details, let’s just say that my parents don’t like children as children; they are supposed to be little adults. Of course, that’s a ridiculous demand; children are children, or they’d be called adults right out of the womb. All that growing and learning stuff to do, you know. I am grateful that they had me (and my brother) but…if it weren’t for my Grandmom, I would have a lot more mental issues than I already do. It’s not that my parents were not caring or loving. But they were authoritarian enough that the military regimens had no horror for me and in fact, I found boot camp to be more free than my childhood years. How sad is that? But let’s not talk about the ‘rents. This is about my Grandmom.

She had a life before I showed up, as amazing as it seems. She was born in Portsmouth VA on February 20, 1914. That’s just a few months before the start of World War I. Her parents lived long enough that I got to meet them…when I was 4. I have a picture in my head of a tall, thin man and a short, round woman…and having to look up up up to see his face. My great-grandmother died in the ’70’s, while we were living overseas. My great-grandfather lived until I was 16…and it was amazing that this oh so tall man was now eye to eye with me.

Grandmom did all the things that people did, back then. She had something called a “Baby Party”, where everyone dressed up to look like babies. Don’t judge, this was before the Internet. (Found a mention of these from the Wheaton College records, where their first Baby Party was held in 1914. It was part of the “moving up” of juniors to their senior year. Apparently something of a tradition.)

She had a younger brother, named Hugh. I don’t remember him, although apparently I had met him, probably at about 3-4 years old. Grandmom told me later that he like to eat mac’n’cheese cold. I tried it that way, and that’s something I still do these days. A connection to my past, even if I began it on secondhand knowledge.

She met my grandfather when she was 16. He knew that she was The One for him. But he was 20 years old, so he waited several years for her before proposing. When Grandmom graduated high school, she went to work for the the Baltimore Steam Packet Company, nicknamed the “Old Bay Line”, as a secretary. (Click here for more about the Old Bay Line ) At some point, she was in a beauty contest and was Miss Portsmouth, about 1930-32. I can’t say for sure, but this may have been a local pageant that led to the Miss Virginia pageant.

My grandfather had a picture of her on his dresser, taken when she was a teenager. It could have been a photograph of me, there was that strong a resemblance. But I’m not tooting my own horn when I tell you that Grandmom was beautiful. Lovely dark eyes, dark brown hair, nice legs…but what made her truly beautiful was the love that poured out of her, that shone in her eyes, her entire life.

I met my Grandmother when I was born. Needless to say, I don’t remember it. I have snippets of memories, like snapshots in my brain, of her and her house from about 4 years old until…I could remember whole movies. My family lived overseas from 1966 until 1971 and again from 1973 to 1976. So a great deal of my childhood was spent too far to see her on anything resembling a regular basis. I do vaguely recall my mother’s friend taking us from the airport to my grandparents’ house and surprising them early on a Sunday morning. They didn’t go to church that day.

When we finally came back to the States to live, my father gifted my mother with living close to *her* mother–and when I say “close”, I mean 5 minutes’ of walking across the elementary school’s property and up through the alley, then down the alley to Grandmom’s house. My parents had actually sent my brother and me home in the summer of 1976 so that we would be in the US for the start of school. So he and I lived with our grandparents all that summer and into the fall, until my parents came home.

My grandmother was the most loving, most patient person I have ever known. I try to be like her. She had the amazing gift of “just listening”. People, all sorts of people, would come to her and pour out their lives. She just sat and listened. The few words she would speak were always loving and wise. She would babysit for anyone she knew, so there was a crib permanently set up in the back bedroom. She kept clean sheets on the double bed that was in the same room, as well as on the single bed in the other bedroom, just in case they were needed. That smaller bedroom was my room whenever I was there.

When I think of “home”, it’s always her house that appears in my mind. It was (and still is) a red brick “row home”, the Baltimore term for what is called “townhouse” or “condominium” in other places. It had a wonderful basement. All sorts of things, on shelves, in boxes… A couple of chest freezers (she had begun with one, but when it no longer stayed cold enough, she added the second and used the older one for things that didn’t require deep cold, like bread) that could have been used to hide bodies… A player piano, the old fashioned kind with the feet pedals to pump the air to make the music. It sort of worked…until eventually the bellows got so full of holes, it wouldn’t play on it own. I learned to play the piano on that.

There were stacks of comic books, a favorite activity for any child–and even for teenagers. There was an old Lionel train set…had to use steel wool to get the rust of the tracks before you could even hope to run it. And there was a bench that had storage inside of it. Flip up the seat and enter Fantasyland…that’s where she kept all sorts of things for “dressing up”. My friends and I played with those quite often.

The first floor was your basic kitchen/dining room/living room set up. The kitchen was smallish, with limited counter space but in a way that was good, because it meant few steps between tasks. In one corner there was a hutch…and on that hutch were 5 glass jars, with glass lids, in graduating size from about a gallon, down to about 2 cups. In each jar there was some type of candy: Hershey’s mixed small chocolate bars (milk chocolate, milk chocolate with almonds, Mr. Goodbar and Krackle); M&Ms (always) and then the other jars held whatever else sweet they wanted, like spearmint leaves or Canada Wintergreen Mints (or as we called them, “pink mints”, for they would leave your tongue Pepto-Bismol pink). My granddad kept some bull’s-eyes, a caramel wrapped around a white sugar icing. Sometimes there would be a package of Oreos or sugar wafers in the biggest jar.

Upstairs were the three bedrooms and the bathroom. And there was a set of stairs in the hallway ceiling, the kind you pull down and can then go up into the mysterious attic. Not quite as much fun for kids as the basement (and the candy in the kitchen), but still an adventure to have. Just a regular row home, nothing special about it…but because my Grandmom lived there, it was MY home,and it was also the childcare center, the hotel for wayward souls, the counseling center…

If someone knocked on the door, they were always invited in. (Thank goodness we didn’t have vampires in the neighborhood.) My Grandmom always had a pitcher of “Southern” iced tea–you know, with sugar–and everyone would have a glass of it. She actually crocheted what we called “pants” for the glasses–think coaster with a wall, going about halfway up the glass. Kept the condensation off the furniture. Any time anyone needed something, they could usually get it from Grandmom, if it was within her power to do so. A bed, a meal, someone to cry on, someone to share the joys of life with, a person so good, so giving that no one ever said a bad thing about her. Ever. And there are still houses today (that if I knew where they were) I could go to and say “I’m Polly Foote’s granddaughter and I need a place to stay” and get invited in without a second thought.

She and my granddad were both extremely active in their Presbyterian church. (I mention the denomination because she had been Baptist and my grandfather Episcopalian…Presbyterian was the halfway point between those religions, so there they were.) Grandmom’s service to the Lord was often, almost always, done in the kitchen. She helped with church dinners, wedding receptions, and the Thursday Pancake Breakfast. For several years, the church offered teenagers pancakes before school. I first went when I was about 9 or 10. I helped my grandparents carry in supplies, I ate pancakes and helped them load the car back up. Eventually I was one of the teens eating pancakes on Thursday mornings. And it was free. The church paid for it all.

She was so much a part of the kitchen that when it came time to buy new dishes, she was the one who chose them. She taught Sunday School when she wasn’t attending her own Ladies’ Group. She worked at Vacation Bible School. She was, as they say, a “good person”, a “good Christian”. Yes, she was. But she wasn’t good because she was Christian. She would have been a “good Buddhist” or a “good atheist”…she was good. She just happened to be Christian.

Her heart was huge, large enough to hold the hundreds of people she knew as well as the strangers she met on the street, in the store… She glowed with love. No other way to put it. She was Love, personified. It drew people to her, to bask in the love of her heart.

And for me? Well, it’s not that I *don’t* love my mother. But when I think of Mother, the source of all wonderful-ness, the person I want to be good for…I think of Grandmom. She let me prattle on about anything and everything. So did my mother. But Grandmom’s listening had a different feel to it, an intensity that my mother’s lacked. Sometimes I wonder how my mother can be as she is (another blog someday, when I’ve had my mood stabilizers, haha), coming from that home.

My Grandmom loved cardinals. She had one that she fed peanuts to…and if she was sitting out front, the bird would come and chirp at her. So she’d say “All right, I’ll meet you out back.” And by the time she went through the house, got a peanut and stepped out on the back porch, he was there, waiting for her. She also loved Canada geese and I cannot see a “V” of them without wanting to show her. She loved purple, something I obviously inherited from her! Being born in February, her birthstone was amethyst. Lucky! I now wear her amethyst ring, as well as an amethyst pendant and her gold bracelet…all the time. (I wear other jewelry all the time as well; getting any imaging done {x-ray, especially MRI} is a study in removing a pound of metal off my body. Okay, I’m exaggerating…but the count is impressive: 7 earrings, a tongue ring, 2 rings, 6 bracelets, 3 necklaces, an ankle bracelet and a toe ring. I’ll be able to trade with the natives for food and blankets when I’m on a trek.)

Grandmom was not a trend-setter. She dressed like…any other grandmother. (Side note: she still had her wedding gown, a glorious, gorgeous heavy satin gown; I tried it on when I was 17 and thin…could not get the waist of the dress past my shoulders.) She was petite, standing only about 5’3-4″. She, like so many of us, weighed more than she had as a young woman…but she was a joy to hug. She was a champion back-scratcher. Even after 50 years in Baltimore, she still sounded like she had stepped off Tara just yesterday. Soft spoken, Southern accent…when I worked at an assisted living community, all those little old ladies, with their white hair and their Southern accents always reminded me of her.

She was generous in a way that has nothing to do with money. She was generous with her love; she was generous with her home, but most of all, she was generous with her time. That’s something most people do not, cannot, do. She was thoughtful and she was wise. She was kind, the sort of kind that we sorely need in the world today.

She was my Grandmom and I miss her. Happy Birthday, Grandmom!

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!

The Weekend is Here, But How Can We Tell?

One of the advantages about being disabled is that you can sleep when you want to, eat when you want to…and one day is pretty much the same as the day before. Only appointments make any scheduled order into this flow of time and that’s about the only way we can distinguish the weekend: there’s no appointments.

I got an appointment to see the podiatrist–and I’ll see him again in a couple of weeks to have a minor surgical procedure. He’s going to remove the edges of my big toe nails and touch the inner part of that removal with a chemical that will kill the cells that generate the nail. I’m looking forward to the end of ingrown toenails! I just can’t manage the angles needed to keep up with my own toes–and going to the podiatrist is WAY cheaper than having a pedicure. We’ve certainly had our share of appointments these past couple of weeks. Most of them just usual check up, follow up or weekly obligation. I saw my primary care giver last Monday. My labs came back within normal levels and we’re working on referrals for acupuncture and for a chiropractor. I had a video conference with the pain management team down in San Francisco–I’m their “trailblazer”, since I’m the first patient they’ve had the telecon with. We discussed all of my pain, how it comes and goes, what the Vicodin does (or doesn’t do) for me. The first and most important result of this conversation for me was the changing of my pain med. No more Vicodin for me–I’m on 15mg of morphine now. As far as I can tell, it works to get my pain a little lower than Vicodin, and the duration is 7-8 hours instead of 3-4. But since I’m only allowed one at night and one in the morning–and my days are longer than 7-8 hours, I’m having unmedicated pain for about 4-5 hours each evening.

The VA has a stair step of pain meds, and I’ve apparently been on a lower step. Vicodin is a short duration med; morphine is a longer one. I’m willing to bet that after I try drug after drug, getting a stronger dose each time…I’ll end up with the Fentanyl patch I requested in the first place. We shall see–and I shall keep you updated.

My parents gave me an inversion table for my birthday. It’s a Teeter EP-960 and it’s already helping, after only a couple of days of use. I’m hanging about twice a day–I want to add more, but being out of the house makes that hard. The folks also gave me the shiatsu/heated pad for the inversion table, so I lay on it while its rollers and such give me a very nice massage.

My oldest granddaughter, the Evil Genius (or EG) started kindergarten yesterday. I always tell young mothers not to blink their eyes because a child’s life flies by and the next thing you know, they are having children of their own. I know it feels that way because it was only yesterday when I had my little ones…and now they’re all growed up,  with families and lives of their own. It’s the one really big, probably only, regret I have about moving to Eureka, is leaving 99% of my family on the East Coast. My parents live in Corpus Christi,but it’s still far enough that we won’t see them, either. I’m so glad for Skype!

I continue to have puppy lust—sort of like baby lust, when a woman sees someone else’s baby and makes wistful eyes and cooing sounds, longing for one of her own (or remembering her own, depending on the age). I think babies are awfully cute, but I have zero desire to have another one. I’m finished with dirty diapers and midnight feedings and et cetera. But boy oh boy! do I want my own little puppy–and it would be a dog that wouldn’t weigh more than 4 pounds, since that’s about all I can handle. My own furry baby, to pet and hold and love on…I miss Harry, my Schipperke. As you can see, he was a fun dog!
BeachHarry0

It will be a while before I can actually get a dog. There’s the initial cost of supplies, buying the puppy and then of course there’s the ongoing maintenance costs. There’s also a small matter of “no pets” in our apartment. I can get the dog certified as an emotional support animal, which is very much a part of the reason I want one–and the landlord has to allow me to have him. So in the meantime, I go look at purebreds and shelter dogs–I don’t really care what the pedigree (or type) of dog so long as it’s tiny. All I can really find that would work really well are Pomeranians, which are godsawful expensive, or 7-8 year olds being thrown away at the pound. I’ll probably go with something I can find at the local shelter, but I do want a younger dog, preferably a puppy-aged one. Believe me, I’ll tell you all about him when I finally get him!

There’s not much else going on. I have an appointment today to have a manicure and this evening, Beloved and I go to a friend’s house to play Pathfinder–a  form of Dungeons and Dragons, or as I call it, “Make believe with other adults”. He gets to have pool therapy later on in the week; I’m hoping that the referral for acupuncture will come through. We’re on week 3 or 4 without any appointments. So that’s my life at the moment. I’ll be back eventually!

Namaste!

 

Summertime in Eureka

The grey clouds and slight chill have gone; there is summer here in Eureka, which is gloriously beautiful. The temperature hovers at about 70 degrees and we have sunshine galore. We have California dandelions as our lawn. They have a different leaf shape than the ones in VA–I first thought I had a yard full of thistles. But then they began to produce flowers…the standard bright yellow dandelions I’m used to–except that each flower grows on a single tall stalk. We have trees around the yard, so our dandelions are about 18 inches tall. And they track the sun, closing up at night.
IMG_20150719_114617[1]So we have this pretty array of flowers, even if they are weeds. I am a little concerned about snakes, which live in similar conditions. Hopefully the landlord will come and cut the lawn before very long. Or I’ll have to see if we can let Cooper, the horse I told you about in the last blog, graze and take some of this down. It’s not a new idea–the baseball diamond near the house shares space with the CA National Guard’s armory and they have 2 sheep and a goat that graze their way around them. Only in Eureka.

Speaking of which, I was at the nail salon getting my nails done (duh) and they had HGTV on, with some show about people wanting beach houses but having a small budget (like $350,000 budget; amazing what some people consider “small” and why on this green Earth they would describe themselves as “bargain hunters”). I wasn’t paying a lot of attention until I caught the “bargain hunter” looking at the fence on the property; it wasn’t a solid thing and she made some comment about having to change it. The realtor said, “It’s Eureka, nobody cares.” That sums up the people pretty well…do what you want (within legal limits, of course), wear what you want, be who you want…and nobody cares that you’re different. And trust me, around here? It’s damned hard to tell who is “different” when there is so much personal expression.

On a side note, they were looking at the house and it must have been summer, like today. Bright and clear, the “bargain hunter” kept talking about how open everything was, how the windows and sliding glass doors “let the outside in” and what beautiful views of the water there were. I was highly amused and wondered if the realtor explained to her about fog, rain, and chill. Probably not, since she wanted to sell the house.

I am not quite as sunk in a funk as the last time I blogged. My referral for acupuncture came through and I have a new man in my life. He’s wonderful. He pokes me and I feel better. And of course I am referring to my acupuncturist. It’s amazing what having 35-50 needles stuck in you will do. It helps but as my Beloved says, it’s still a very thin layer on top of the pains so I have to be very aware not to overdo, since it would be so terribly easy to push beyond the limits I know. I also enjoy the fact that he points an infrared lamp at the soles of my feet to help keep me warm, as I lay face down on table–and another at the “especially painful” area, usually my neck. He also has something he refers to as “Chinese Ben Gay”. It looks like shellac or lacquer in a jar, and he applies it with a paint brush. It smells…well, Chinese…but I like the smell and it works very well indeed. I have purchased a smaller bottle of it to have at home–even share with Beloved, who has his own share of aches.

We must have caught up on our doctor visits, as we haven’t had many appointments in the past several weeks. We have added a new weekly event–we are playing a Dungeons and Dragons sort of game, called Pathfinder. My character is a cat who has been Uplifted–made as intelligent and capable as humans. His chosen class is a Hunter, which gives him an animal companion. Mine is a wolf. Beloved’s character was most foully murdered in her bed and he’s having to figure out the replacement. Yes, my character is a male and Beloved’s is a female; I guess that makes us cross-sex players.

(Mentioning sex players reminded me–there is a place up in Arcata called “Pleasure Time” and it is for adults only. I wish we were up to finding out what that’s all about. <grin>)

Anyway, we go to the Dungeon/Game Master’s house every Tuesday night and play make believe with dice. It’s social, we’ve met 4 new people and it’s an activity that we can partake without too much toll made on us. One of our players is VERY pregnant–like, she might not be there this week, but almost definitely not next week. Dunno what that will do to the game if she has to drop playing. You know, that whole newborn baby thing.

We haven’t done much in the month since you and I last spoke. We both have new CPAP/BiPAP machines, woo hoo! I’ve been watching movies on Netflix and finally saw “Lost Boys”. I’m still playing a lot of flash games–match three’s, bubble shooters, sims…something that doesn’t require a lot of attention and can be played or left alone. I’ve also been spending a lot of time on the Pathfinder stuff–had to write a back story for my cat, have to keep track of all the various points I have (or could have) and make sure they correct for the new level the adventuring party has reached.

So nothing extraordinary, either good or bad. Quiet days, some better than others. Going out when we have an appointment or need food. We’re still working on that trip to Costco. We’ll have to eventually because that’s where we get our toilet paper…so when we run out…
Just touching base with you, mostly. Nothing deeply profound to share…just a nudge to let you know that I’m still breathing.

Namaste!

 

The Circle of Life (With a Disability)

Forget Area 51. Don’t worry about crop circles or anal probes. You need not look for UFO’s or any other-worldly phenomenon. The aliens are already among your population. You just haven’t recognized them.

What do they look like? Well, pretty much any person who has a disability is an alien. Anyone who cares for the disabled is maybe an alien, maybe human but definitely controlled by the alien for whom they care.

And I’m not completely joking when I say this. People who are disabled will get what I’m talking about instantly. Those who are fully able will not have a true understanding simply because they cannot begin to fathom a life lived within the confines of disability.

We’ve talked several times here in this blog about how life revolves around our individual disabilities. Everything, and I do mean EVERYTHING, has to be passed through the disability filter before it can be acted upon or allowed. Some things seem obvious: a blind person cannot drive; a paraplegic cannot be a ballerina; an amputee cannot do the usual things a person with all their limbs are able to do. Medical science and technology have come a long way with a variety of devices or treatments that allow a semblance of “normal” to many obviously disabled people.

However. There is a hidden population of people with less obvious, maybe even invisible disabilities. My dear readers, you probably know pretty well what I am talking about. Diseases like lupus, fibromyalgia — and yes, it IS a disease, don’t let some ignorant person tell you differently, not even your own healthcare provider — diabetes, narcolepsy, the list goes on. And on. Far too long, far too many diseases that are disabling the people they affect.

And it’s this hidden group that has the hardest time trying to fit into “normal” society because the rest of the community fails to see the disability. They cannot accept it, cannot understand how it is just as debilitating as losing a limb, eyesight, or any other of the visible disabilities. These hidden folk also have the added burden of trying to continue to function in society as if they were not sick–and frequently paying a dear price for that masquerade.

We grow up thinking that we will always be able to do the things we want to, the things we must do, without any thought about how a myriad of daily activities can be accomplished when the body fails us. Pretty much everyone I know that has any disability goes through the stages of grief as described by Dr. Kubler-Ross: anger, depression, denial, bargaining and acceptance. She originally used these stages to describe the mental processes of someone dealing with death but they are just as applicable to those with disabilities. The catch is, someone with a disability will go through these stages more or less continuously their entire life. They can begin on any step, miss one (or more) to the next step…and just when they think they’ve found the final acceptance, something changes and the cycle begins again.

Anger. Depression. Denial. Bargaining. Acceptance.
Anger at just having this disability, or the group of symptoms that adds up to disability. Anger at your body failing you, anger at not being able to do the things you used to and by association, anger at not being able to make the most casual of social plans (let alone maintain a work schedule) without careful planning and fall back plans. Anger at the cost of disability: doctor visits, medications, peripheral assistance devices (like a scooter or a cane), time missed from work — if you’re even holding down a job. Anger, pure black blind rage, destructive and yet wholly justified. It will eat you alive if you don’t learn how to let go of it and not let it rule you.

Depression. Denial. Bargaining. Acceptance. Anger.
Wow. Depression is a BIG one. First, anger (see above) turned inwards, towards yourself, leads directly to depression. And depression is not the same as sadness. Or feeling blue. It’s not a monkey on your back…it’s more like a 300 pound gorilla. (Which is the average weight of a wild male gorilla–not some random number.) It’s a different shade of black than anger. It’s black like a tar pit, or the utter bleakness of lonely place on a cloudy night. It’s drowning in molasses: slow, messy but inevitably leading to death. It’s being totally ostracized from all society except those who are also disabled with depression. Yes, it is one of the invisible disabilities just by itself–but it frequently hitchhikes on the back of another disability.

Denial. Bargaining. Acceptance. Anger. Depression.
Denial…oh no, not me, uh-uh, no way no how. Can’t be about me, can’t be me. There’s the all too obvious denial of the disability, of the disease/s straight out. But there’s other, more subtle denials. One of my favorites is not accepting how truly limited I am, trying to do something and paying for it in pain the next day. There is always a price to denial and it’s usually a fairly expensive price. Denial is also the failure to explain to the people around you just what life with your disability is like, to help them understand the reality of your disability and to be compassionate when you cannot be who you used to be, B.D. (Before Disability)

Bargaining. Acceptance. Anger. Depression. Denial.
Bargaining is never a good choice when your collateral is…well, negligible. And bargaining directly with your disability is a sure way to lose it all. Bargaining can mean setting a limit on the restrictions…”Okay, I’ll take it easy, not lift and move all those boxes today…then I will go shopping with my friends tomorrow.” I have news for you, Sunshine. You can take it easy, rest up, trying to bank energy against a future activity…and still be too disabled to attend the function, do the task, whatever you were resting up for.

Acceptance.
It is a tremendous blessing to be in a place where you have truly accepted this life of being disabled. It’s a place where you do what your body permits, without pushing the limits. It’s the gentle refusal of an invitation to anything that would smash the limits of your disability and leave you in a state of panic, depression…or just so damned worn out that you must leave and you’ve only been there 30 minutes. Acceptance is the graceful (and grateful) allowing others to do for you things that you cannot do. And knowing that you will (always) be the one who receives and not the giver. “It is more blessed to give than to receive”, we’ve been taught. Well, someone has to do the receiving or there’s no way to give. Acceptance is a balanced, spiritual, sacred–and even happy–state of mind. It only shows up minute by minute, so it’s worth watching for, to be in the state of acceptance whenever you can identify it.

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

It’s a cycle, never-ending but always changing so that you can, perhaps, find ways to skip the first four, acknowledging them but not letting them take charge of your life, to be in the state of acceptance for as often as is possible for you.

Disabilities affect us at pretty much every level of our lives, from being able to dress ourselves through unimpaired functioning at work, through attending gatherings (which strengthen the tribal bonds). Like everyone else, we have lots of choices throughout our day…but ours generally are of a particularly mundane level. Can I take a shower? Can I go out? What do I want to eat, or what can I eat? Am I able to concentrate and focus enough to do a craft, read a book, surf the Interwebs? Can I load the dishwasher, sweep the floor, wipe the counters? We the disabled have to consciously make choices that most people make without a single thought of whether they will be able to do it…or not. Everything we do requires some amount of conscious thought, a directed choice process, always and always weighed against the limitations our disability has bestowed upon us, a cursed blessing that is part and parcel, sometimes an entirety, of the disease/s we suffer from. We do suffer…but we don’t have to stop living–even though some do make that choice, based on all that we have discussed above.

Making it personal now, I will tell you that it has been a bad week for me, state of mind-wise. I have been very depressed (not directly suicidal, but feeling hopeless and without any way out). It hasn’t helped that my body has been particularly achy…or right out painful. I am at the edges of where I can be with my Vicodin…but there’s been no word from the pain management team in San Francisco (our main medical center and not where I receive care) about my getting a Fentanyl (Duragesic) pain relief patch–3 days of level pain reduction and not the roller coaster I ride now. You know, take a pill, wait for it to work, it works then begins to fade out, take another pill, wait for it to work…ad infinitum.  So I am essentially not properly medicated for pain–which technically is against the law, a law I am so thankful for every day of my life.

The weather has been nice, which sort of helped. Beloved made it his mission to help me get a bit out of myself by taking me out to eat. You know, the requirement to dress, get out of the house, be around other people (which is not always a good idea for me, with my social anxiety problems). I can tell you that we’ve had some interesting things happen. Just yesterday, there was a horse, eating the dandelions from my lawn. I don’t live out in the country. I don’t own a horse. I was not aware of any stables nearby. But there it was, big as life (well, of course it would be) and nibbling my lawn. I got to pet Cooper and talk to his rider–and forgot to get a picture. Only in Eureka can you find a man walking his turkey, a horse eating your lawn, “Captain America” doing the walk of shame after a costume party the night before. It’s never boring, that’s for sure. At least, not outside of my own personal funk.

I would definitely describe myself as “at step 2: Depression”, thank you very much, Dr. Kubler-Ross. I am wallowing in the inescapable truth that I am even more limited than I admit to being. I resent the fact that I have to push every decision, every choice or possibility through the triple damned “disability filter” before I can do anything. I am grateful that breathing is NOT one of those choices and I hope that remains true.

Things are being accomplished. I had my intake appointment with my back-up, urgent or acute care doctor–my husband’s care provider and not part of the VA system. We’ve both got referrals out in the medical ether–me for cardiology and acupuncture, him for dermatology. He’s gotten his appointment with same, but not me. Yet. I am in the process of getting the medical notes from the independent evaluation back in March–the office will not, cannot issue those records directly to me. Seems the contract the doctor signed from my insurance company specifically forbids it. BUT they can be released either to my lawyer or my doctor. Guess what? Both of them are requesting the records. I want them in my records because they are part of the history of my disability. My lawyer wants them for further evidence as we move through the SSDI application maze. And either my lawyer or the VA will give me a copy because I want to know what the doctor found and wrote about–especially since it made the insurance company give me a “total disability” status.

I have also been the very grateful and very gleeful recipient of a Microsoft Surface Pro 3 (tablet). My father loves me a lot! It’s really good for watching movies or Kindle. I’m still getting used to the touch screen, but I must be successful because when I come back onto my laptop, I try to touchscreen things…and then get mad that they don’t move…duh. Uses a mouse, it does! I’m looking forward to a day that we feel up to it, and go to the coffee shop to spend some hours there. My Surface will go with me and I can cruise the Interwebs from there.

I’ve even been doing some cooking–got a recipe for Turmeric chicken that will be a more or less steady item on the menu. Same goes for a recipe of a Szechuan peppercorn marinade, really nommy on pork ribs (country style, no bones). Figured out how to make pumpkin-cranberry bread in my breadmaker. And that will also be repeated–as soon as I can clean out the pan for the breadmaker. We’ve gotten a replacement for the rice cooker we lost in the move and are cranking out rice pretty often–at least once a week, sometimes two.

So I’m blue at about the azure stage–not navy blue. But definitely more blue than pastel blue. And I know that eventually this will pass. I truly suspect a lot of it is based more on the anxiety of pain unrelieved and the “normal” anxiety of income and making the bills. I think that if I can get my pain better controlled, a lot of the side symptoms may leave. I hope.

So thank you for reading this, and I hope that you’re in a good place, a good state of mind.

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!

Singing about the Home Health Aide

It’s been a quiet couple of weeks. We spend a lot of time sleeping or watching movies/TV on Netflix. We’re also eating poorly, since neither of us feels like making “real” food. My parents generously threw some money into our bank account, which we are using for some bills–and some eating out. Otherwise, we’d starve, I guess.

Last week I did something new. Well, it really is something old, but something I’ve not been doing for a while. A friend of mine pointed me to a website, “SingSnap.com”, which is essentially online karaoke–but you record your singing and share it with the community. He told me about it almost 7 or 8 years ago. At that time, I couldn’t get it to work right on my computer and I was busy doing other things, so I never really followed through on trying it out. (If you decide it would be fun, go there and look for “KnottyKitteh” to hear my recordings.)

I sang my first solo when I was 9 years old, singing “O Come All Ye Faithful”. I was actually singing long before that since my whole family is musical. I sang in high school, both in the usual “just sign up for the class” choir as well as the audition-only group. Once out of high school and on to the rest of my life, I sang all the time at home, and with a group when one was available. That mostly meant church choirs (since I had not ascended to Buddhism yet, lol). When I moved to Rochester NY, I started with the choir at the local Catholic church but due to personal pressures, withdrew from them. But I did get an unexpected benefit: I could walk into the church a little before the service and the organist and I would plan a solo for me to sing during Communion. I sang Schubert’s “Ave Maria” often; also did the Bach/Gounod “Ave Maria”, and Franck’s “Panis Angelicus”.  It was also at this time that I discovered the Rochester Oratorio.

The Oratorio performs in a variety of venues, including the Eastman School of Music’s auditorium when they perform with the Rochester Philharmonic Orchestra. They also sing at the Hochstein, various churches, and in government buildings for Christmas time. When I was with them, we also sang at the Geneva Opera House, in Geneva NY which is considered to be a premier opera house.

I have to tell you that I went to my audition, I sang for the maestro (and the pianist, and a couple of other people) and then awaited his decision. I will never forget what he told me that day: “With a voice like yours, you should be singing.”

And I did, until asthma pretty much removed the ability to commit to that kind of singing. But I still sang at home, I sang with my children (who both have excellent voices!). I tried singing at the UU church we attended in Manassas VA and struggled with the effort it took. I finally had to stop and I explained to the director that the effort to sing and the fact that I was obviously not singing up to what had been my level of achievement combined with the figurative slap to the face that I couldn’t sing like I had made the choir into something that I dreaded, rather than enjoyed.

And then, a few years later, I ended up where I am now: disabled, in pain and without much to sing about. I have not sung consistently in over 8 years. I miss it. The few times I try to sing, I realize that I cannot hit the notes, cannot sustain them…it isn’t worth it. But! Then I remembered this site and I went over to take a peek. I signed up, and have discovered that while I may not have the voice I used to, I still have a voice that I can use to sing. So almost every day, I spend a couple of hours singing and recording. I’ve discovered that I am focused enough what I’m doing, concentrating on the words and timing, that I don’t notice my pain. It totally distracts me from the anxiety and depression I’ve got. I am now having “music therapy”, and I tell you, if you like to sing, try this out. It won’t hurt. It might even help.


Turning back to the fibromyalgia part of my life. I’ve complained (on here) about my inability to take care of my self and my house. Taking a shower exhausts me for two days; washing the dishes means that I won’t have the energy to cook anything. So Beloved and I have applied for In Home Health Services (IHHS) to get an in-home care provider. It will be someone who can come and clean, take out the trash, bring up the laundry and groceries. (Side note: Beloved has fallen *hard* down the stairs [stepping off the 2nd step, thinking he’s on ground level. Oops] three times in the past 8 weeks. He’s become phobic, and who can blame him, about carrying things down, since that’s when it occurs.)

This care provider will also give me a shower and wash my hair–and truthfully, I have no nudity taboo, so that’s not a problem for me. This person will give Beloved foot care, which he needs because of the problem he has with the heels splitting. With our charming, 31 inch square, coffin — AHEM– I mean, shower stall, he cannot bend over to clean adequately from the knees down.

I feel stupid, having to have someone else do the things that I should be doing, that I have been doing all my life. I am grateful beyond words that I can have someone come and do it…but…so I’m doing a little bipolar dance about the topic.

We have applied and had the home inspection to determine if we are eligible, and how much we are eligible for. So the IHHS person came today to give us our orientation for getting a home health aide. They have approved about 22-ish hours per month, for each of us, so it’s about 45 hours per month or about 11 hours per week, which is totally awesome. It’s up to us to find and hire a care provider (or in our case, possibly two, more on that in a moment), then train them to do what we want. We will track and submit their actual time for the county to cut a paycheck.

We had already discussed that Beloved has a person in his group therapy who will clean houses. She is, in fact, the young lady who came several months ago to clean our bathroom and kitchen. I don’t remember if I told you. Anyway, we would like to offer her the chance to have a steady and set income. It would be at an hourly rate less than we paid her, but if she’s willing, I would be very relieved. I know that she will clean to my (my mother’s, if we’re going to tell the truth) standards. So then we would hire a second person to come do the personal care for Him and me.

I am hoping that having the basic tasks done, including my personal care, will allow me the energy and fortitude to do other, perhaps more enjoyable, things. I won’t have expended my small store of spoons (Spoon Story) and that would be an amazing, amazing thing. That possibility is what keeps me from trying to argue with someone that I don’t “really” need help, that I can do it (if I just stretch a day’s worth of chores across a week). And that is something worth being thankful for–and I am!


So there we are, caught up on events. Appointments this week include trips to the headshrinkers for both of us, then Beloved’s usual Friday funfest of group therapy followed by game group therapy.

My physical therapy was re-approved, so I’ve got a few days to do pool therapy; Beloved is also scheduled for his sessions through the middle of May. (My last swim session is on the same day — and time — as his re-evaluation, at which time he will request more physical therapy. Stupid arrangement…you get about a week’s worth of visits, with two evaluations (before and after) and then you get to wait some indeterminate amount of time while insurance decides if it will pay for more. And while you’re waiting? Any forward progress you might have made waves “bye-bye”. I can’t think of ANY injury or health issue that requires physical therapy that only needs 5-7 visits to be “healed”.)

Nothing major on the horizon, except of course for the decision about my LTD insurance benefits…fingers still crossed and noting that 2 weeks of what we hope is only 8 weeks has gone past.

Namaste!

Road Trip to Redding: The Return Home

Welcome back, gentle reader.

The wheelchair-able vehicle showed up at 12 noon, on Tuesday the 31st. We loaded up and headed East. I swear to the gods that POS had no shocks and certainly had NO padding on the seats. I tried all three seats in the back (since Beloved got the shotgun seat) and I couldn’t say that this was too soft, this was too hard, this was just right. They were all too hard and nothing was just right.

Have I mentioned that Redding is East of Eureka, through the mountains? It is, and with all that “going through the mountains” holds. The driver was obviously not real familiar with the road and seemed surprised at the “30 mph, 270 degree” turns. The various zig-zags also apparently startled him. How was the ride? Well, it was just like riding a not-too-well trained horse…I had to lean left and lean right and brace myself for almost every turn.

But wait! There’s MORE! And it only gets better! Highway 299 is undergoing a long term construction project to widen the road and make it safer where they have rock falls of a somewhat frequent nature. I knew this from examining Google Maps. This was also a shock to the driver (and to the company –“Access on Time” — who hired him) since neither of them thought about leaving a bit early to make up for time spent sitting on the road, waiting for the one lane road to be in our favor.

If you have to stop for 5 – 10 minutes before being able to continue upon your trek, no big deal, right? What if you have to do that 5-7 times? That adds up. What had been advertised as a 3 hour tour ended up being 4 hours of hell. And since my appointment with the doctor had an arrival time of 3:15 to complete paperwork and prepare for the actual examination at 4:00 … that meant that I entered the office at 4:15. Oops. Thankfully the only comments made pursuant to my lateness was concern that something had happened to us. (Even the driver’s company had called, looking for him.) But enough of that bad memory.

The doctor’s staff was kind and efficient. I had my blood pressure taken (a bit high, but who could blame me with a pain level of about 8 and the anxiety of the visit itself?), temperature measured and I got weighed. Oh happiness–somewhere in the 2 months since my last visit to the VA clinic, I lost 10 pounds. I can only hope it doesn’t pull a Lassie on me and travel from the clinic back to me!

I got put into the exam room and waited for the doctor–a penance happily accepted as my due for being late enough that almost anywhere else I’d have been told to reschedule. He came in and we began the evaluation. He hit me with a hammer, which felt like being hit with a hammer even though it was just the reflex tester. We talked about when my pain started (in 1975, as I so facetiously put on the form I gave them) and how it manifests. We talked about what I can–and cannot do. He poked and prodded, had me demonstrate a knowledge of where my body parts, in this case hands, were in space without being able to see them.

He also inquired quite closely about my employment and how long it had been since I had worked. We finally worked our way back to the starting point for his questions: he said, and I quote, “So the company is trying to not have to pay you something?”. And I replied, “Oh yes. It’s the long term disability insurance company trying not to pay me disability pay” … which was what I thought the premiums paid to that company were for. Silly me. He really did take an hour to make his evaluation–and had apparently really gone through the paperwork I had brought–a 2 inch tall stack of paper, not terribly impressive but still a lot to have leafed through. Makes me wonder if he has photographic memory.

He thanked me and I was turned loose–but I do have to say, that comment about the company not wanting to pay out something…gives me some hope that he will tell them there is no doubt about my being disabled. He had touched about 8 of the trigger points which I had jerked back and then begged not to be touched…says he, “Oh you definitely have multiple triggers–and you cannot fake triggers.” So I am not faking being disabled…really? This is what I’ve been trying to tell the LTD insurance company for almost 3 years.

It was a real relief to come out of his office. Regardless of his evaluation, whatever he tells the company…my part in this hellacious process is done. I have done all that I can, produced all the doctor’s notes and lab reports to back up my assertion that I am, indeed and so help me all the gods, disabled. The decision, good or bad (and of course, I am hoping for good!), is now out of my hands–and this will be the absolute ultimate decision. No appeals, no repeals, no other line of inquiry to follow up. So there is a definite loss of anxiety about this. There’s still some for the decision itself–but of course!–but I cannot do anything more to convince this company of my real physical condition. To say nothing of the mental condition…

So I come out of the doctor’s office to find our transportation is on site (I didn’t need to call and request it) and we get into another wheelchair-ready vehicle…and the seats are padded! Too bad it was only about a 15 minute drive to the hotel, but there we are. We stayed at the Win-River Casino and Hotel, because apparently it had the cheapest rooms in town. I am okay by that, since the hotel portion was only completed in 2014–so it’s not as old as our tenure here.

It’s (obviously) run by one of the tribes of The People; lots of Native art and colors used in the decorating. We were greeted by a porter, who was all smiles and helpfulness. Check-in was a breeze, and then up to the room. Nice room, lots of small amenities one does not expect to find in a “cheap” hotel. We had to walk through the casino to get to their “Elements” restaurant. I’d have to wear my earplugs to be able to play the games–too much noise, too many lights, too many people in one space. The one thing there wasn’t? Smoking. The WHOLE place is NO smoking allowed. So there went my chance to go back to the room smelling like an ashtray.

The restaurant was separated by a well-designed and attractive half-wall (well, almost 3/4, but you know what I mean), so the noise and lights were really just a faint background intrusion. I could hear the “Jackpot!” buzzers when they went off…but otherwise, I could just block it all out by not looking out beyond that attractive wall. We had looked at the menu online and Beloved’s parents had spotted us money for food (the one thing we paid for on this medical journey), so we tried several things. He had their buffalo chili, declared it good; we got the smoked trout spread appetizer which was nice. I had a cup of the enchilada soup, also very good. For dinner he got a buffalo burger, topped with pastrami and horseradish cheddar cheese. I got fish’n’chips. I had a glass of the house Chardonnay with dinner which was so good, I took a glass to go when we headed back up to our room.

(BTW, my friend is a real oenophile and I wish he had been there because we could have gotten a bottle of La Crema for almost $20 less than he paid in NoVA. The liquor prices are lower because The Peoples do not pay all those nasty taxes!)

We lounged for a little while, I drank my glass of “to go” wine and then we fell into bed. The only really bad part about the hotel was their beds…ack. Neither of us slept very well and my bed had a decided squeak, loud enough to stir me from sleep every time I moved. Sigh. I guess that’s what you get for a night’s free stay!

Up in the morning, Beloved took advantage of a shower that is larger than our 31″ phone booth shower stall. I began gathering stuff up and it was a good thing we were as far in our preparations to leave as we were. At 10 am, the front desk called with our transportation back to Eureka; the itinerary I had said pick-up time would be 11 am. Oh dear. Better quality wheelchair van; same company as the good ride from the doctor’s office–and they are considering expanding into Eureka, which I would love. Older driver, who makes that particular run about 5 or 6 times per month, so he was very familiar with the road and managed to “straighten out” some of the worst curves. The ride was very different going home…

I have to tell you about this driver: old, white male. Obviously gets his news and other personal stances on topics from Fox. We tread dangerously onto thin ice with discussion about the ACA, “Easterners don’t like guns” and the such like. Since we were trapped in this hurtling vehicle, which he controlled…we just politely agreed and then changed the subject. He did have a lot of incidental information about the route itself, which was cool. He could name the various rivers and mountain ranges we were going past. Beloved got to see some of the really tall Rockies, complete with snow on top! You just can’t get a good perspective on the mountains without actually being in them and realizing that what you thought was about 100 feet is more like a 1000.

The one unabashed compliment I’d have to pay this driver was this: he had the most incredible, best use of side hair, comb-over I have ever, ever seen! The hair strands were about 6-8 inches long and most artfully trained up over the bald pate in curls and swirls and hairsprayed into an inch of their lives, giving an incredible illusion of a full head of hair. The only reason I got to looking closely was his repeated fluffing and checking the location of the illusion he was perpetrating.

The one thing I’d use to describe his overall personality would be this: he told us that he and his wife had bought a car–a Corvette. He had a picture of it on his phone, which he showed us. He proudly told us that he had put on an additional $17,000 in frou-frou additions, like a special paint job, “wings” instead of steering wheel, and he showed off the electronic key–which has a “real” key hidden within to get into the trunk. As Beloved pointed out  to me later, that type of key makes him extremely attractive to hackers who would like to take a Corvette for a spin. I felt vaguely unhappy with this confession of car buying until I realized that it was not just buying a car. It was buying a $40,000 car, adding $17,000 of bullshit accessories–so a vehicle that was worth almost $60,000. That only seats TWO people. That has naught of any storage type space, so it can’t carry cargo, not even an overnight case. And since he admitted that when he drives the wheelchair van, he stays in the fast lane and does 5 mph over the limit…I can only imagine how fast he takes that ostentatious consumerist vehicle when he’s driving it. If he can afford that kind of car, he probably can afford the speeding tickets.

And I am deeply offended by that kind of wasted spending–and the selfish desires behind it. Not just the money to pay for the car, and the money for accessories. It’s specifically designed to use fossil fuels; it emits pollution, it’s made of plastic and polymers, which is another use of fossil fuels. And the sheer amount of money it actually cost him? Could have been used for something much more generous, much more usable…donation to the local homeless shelter, a grant to the local primary school, given to the library to buy more books, upgrade their computers…the list is only limited by your imagination. I realize that it’s his money, he can buy whatever he wants…but I try to follow the concepts of Buddhism, which includes generosity without thought of recompense, giving to those who need when you have the means to do so. I consider that big of a compensation for small penis size…self-centered and completely unable to see the needs of people who are not part of “his” people, not part of Us, they are “Them” and as such, don’t need and worse, don’t deserve any relief from their troubles.

(Author’s note: the reference to small penis size is not meant to denigrate or in any way make fun of those who are not hung like a horse. The average vagina is 3-4 inches deep; the average penis is 5-6 inches. Plenty of happy action there. It’s trying to compensate with external and meaningless gestures, like buying the type of vehicle that is supposed to scream “Look at me, I am SOOOOOO manly”…which makes most woman automatically subtract 4 inches from estimated penis size…then balance that against what must be his bank account’s size. Fellas, take what Nature (or God, if you want to involve him in this discussion) gave you and learn how to actually use it–or how to compensate with other (oral or digital — meaning fingers, not electronics, you dirty minded perv) forms of pleasure for your partner.

Nobody NEEDS a Corvette. Trust me, I think they are some pretty awesome speed beasts. But my son pointed out the basic truth about ‘Vettes when he was high school: “Mom, how’s come only old guys own Corvettes?” Now talk to me about a 68-69 Chevelle and you will see me trying not to salivate. Love me some muscle cars…LOL.

Back to the trip: We got home about 2:30ish, making the actual travel time from our house to Redding at 4 hours, not 3. Got in the house, did some mild unpacking and then fell into bed for a good long nap. We are both exhibiting the physical signs of stress and anxiety relieved. My mental state is actually a bit clearer feeling than it has in a while–but I am at the verge of weeping. I’m finding my hand tremors are terrible–worse than ever. Beloved suggests I might be actually overdosing on the Gabapentin, so that is something I will follow up with my doctor whenever I actually get to see whomever is going to be my primary care physician. I have a list of things I want to talk about–some of it VA-specific, some of it just about me.

So now we settle back into our usual routine. Beloved has pool therapy set up for about twice a week through the end of April. I am waiting to find out if the VA will re-approve me for my therapy. Just getting into the nice warm pool and bobbing about without gravity on my back is wonderful. I’ll do that for 6 or 8 months and then we can talk about adding some small stretching or exercises. Maybe.

I made an appointment with my psychologist, who I haven’t seen since before Beloved’s hospital stay and his parents’ visit. Lots to report to the headshrinker! And Beloved’s birthday is in 23 days…and this is a “freak-out” milestone: he turns 40. BFD says I, from my vantage point of 53, going to be 54 years old in August. Guess I’d better find him some denture cream and a walker…LMAO.

So that’s what happened, and that’s my story–and I’m sticking to it. I ask you all to have lots of good thoughts and positive energy that the doctor in Redding will make a positive (for me) evaluation and I will start to get my LTD benefits again. (And that would make me really happy, as they owe me a butt-ton of back pay. We could sure a butt-ton of money!)

So peace out, talk to you all soon.

Road Trip to Redding

I’m going to start with this link, please take the time to click it and read the article–it’s not long!
Start Where You Are

This was the comment I posted for that article:
“Thank you, thank you, thank you! You have my deepest gratitude for your words today. I need(ed) them so badly!
Obviously, I am a sufferer of chronic pain–and the limitations my various diagnoses have forced on me. I have also had my stress-anxiety disorder tested to its limits as I am *still* fighting for SSDI (4 years and counting; could be another 4-6 years) AND I am dealing with a Long Term Disability insurance company that has stopped benefits several times because they think I can and should go back to work.
So this article hit me hard…because I am preparing to be transported from Eureka to Redding (a 3 hour tour of the winding-est roads and mountain terrains I’ve seen since we drove up from Sacramento 17 months ago). The LTD insurance company wants an independent medical evaluation before making what will be an absolutely final decision about my case. Part of the reason they don’t want to pay (aside from the obvious of trying not to pay ANYONE) is that if they make the decision in my favor, it means they are then obliged to pay me until 2028, when I turn 67 and go onto Social Security (“retirement” rather than SSDI disability). If I do receive SSDI, the insurance company will pay the difference between SSDI and my LTD benefits–a not insignificant sum and one that would be totally wonderful to have as part of our limited and very set income. SSDI does not give much of a raise each year and there’s no bonuses or overtime available. Sigh.
As it is probably obvious, I am in “a state”, making sure that I have the medical documentation I have been asked to bring to the office–it’s only about 2 inches tall, not a very big pile of medical histories at all… I have the added stress of preparing for a night away from home, because I cannot sit for 3+ hours, see the doctor (scheduled time is 1 1/2 hours, plus any waiting I have to do) and then have to make the 3+ hours ride home. The insurance company is providing transportation and lodging (at the local casino! haha … because it’s cheaper than the Holiday Inn next to the doctor’s office) for me–and my 6 foot tall teddy bear, aka my husband. That’s really great and the casino hotel looks awesome–it’s very new, just about 1 year old. BUT. It means I have to pack a bag, even though it’s a small one–preparing adequate medications in travel containers, carrying our CPAP machines and the distilled water for them, and entertainment for the hours between the doctor’s visit (let’s say 5 pm) and being picked up to go home, 11 am Wednesday morning. My mobility scooter is going with us, so I have to remember the charging cord for it…
In other words, I am feeling rather overwhelmed and VERY anxious, stressed out about tomorrow.
We have errands today to finish up some preparations–we both need more nose spray (or we can’t breathe), he’s got meds to pick up, and we have to check our mailbox in the local UPS store to get meds for me, and hopefully, the San Francisco VA Medical Center has sent me the hard copy of ALL of my VA records, along with a CD of the imaging that’s been done–which is totally necessary, as it shows the degenerative arthritis in my spine and the bulging or missing discs in various sections of same.
It’s sort of ironic that the medical thing that will probably get me declared “truly” disabled is the sad condition of my spine, and not the fibromyalgia that covers every other symptom. But I’ll take what I can get.
Reading your article as I said truly gobsmacked me–and I truly needed that. “Start where you are” is great for the daily life (and as a Buddhist myself, I try really hard to find that kind of living in the moment mindset) but I especially needed to hear that today, for today and for tomorrow. I think that once I’m finished at the doctor’s I will calm down a great deal, because my part will be done, there’s nothing more I can do to affect the company’s decision–and with this, they have a very limited time to give me the answer, so the endless waiting and hoping will no longer be endless. Regardless of the decision, the “not knowing” will be over and that in itself is a great removal of anxiety and stress.
I am grateful to belong to this community–it sucks that we all suffer something beyond “normal” life, but at least we have each other! And I appreciate your letting me post this wall of text to say sort of out loud what’s going on in my head–which helps me deal with it. Knowing that I’ve now got a lot of sympathetic and kind thoughts for me happening in the cosmos of chronic illness sufferers…means more than I can say. Thank you, all of you–and especially Toni for giving me the reminder that I can face anything, particularly stressful or anxiety-producing, with the mindset of “Start where you are” and then “find workarounds”. (PS–Like Toni, I am right-handed. I am becoming more and more ambidextrous as I have to use that left hand/arm more often. It’s not a bad trade-off.)
Blessings, peace and joy to you all. All we truly have and can live in is this moment, right here–moment by moment.
Namaste!”

Saves me from having to retype everything and lets you get informed about the way too exciting events I’m dealing with this week. I’ll update this when I can after I see the doctor. In the meantime, cross your fingers and help me hope for, wish for, a positive decision that will immediately decrease not only my gargantuan stress/anxiety level, but also Beloved’s. It means living within OUR means and not within the generosity (very much appreciated but also a bit… dependent as a child and no longer an adult…) of his parents. It means the difference between being able to get the bare necessities and being able to afford some of our “wants” without having to choose between them and eating. And we would get that anxiety not only alleviated, but smashed because the insurance company owes me 13 months of pay if they approve it–and then the monthly checks begin. I try not to think about that chunk o’ money because we might not get it…and I don’t want my hopes up that high!

So that’s where I am, we are. I can use all the good juju, prayers, good thoughts, positive energy, candles lit, whatever it takes to make the situation have a good and successful end. Thank you and watch for the updates, which will, all the gods willing, be happy ones!

Peace out!

(Part Two)