Tag Archives: improvement

Meanwhile, Back at the Ranch…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

Ongoing Life

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

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

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

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

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

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

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

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

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

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

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

Compassion for Others Begins With Compassion for Yourself

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

Karma Is Not Always Bad

Karma Sonnet

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

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

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

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

~~KGC

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

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

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

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

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

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

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

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

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

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

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

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

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

Karma Haiku

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

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

Peace and blessings to you all, Namaste!

Disabled or…UNable?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

High Anxiety

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace and blessings to you all!

It’s Not Easy Being Zen

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

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

AM Meds:

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

PM Meds:

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

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

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

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

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

[EDITED]

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

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

So here goes:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!