Tag Archives: disability

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!

Time “March”es On

Okay, so it’s been 3 months since I last blogged. And I didn’t fulfill my promise to tell you when my chair came. Here comes the excuses, or as I like to call it, “a new blog to bring you up to date”.

Wheelchair first. It was delivered to me (first mistake) in January. It was supposed to go to Western Rehab, so that the tech would come out with the chair to my house, make sure everything was set for me–arm height, foot rest position, joy stick, etc. But it wasn’t…it came straight to my house, delivered by the (duh) delivery driver, who didn’t have a freakin’ clue about the chair, let alone the knowledge to adjust it. It had no seat. Really. Just a flat piece of steel, bolted to the rest of the chair. Theoretically (as I was told later), this is because the back of the chair folds down forwards, so that I can get it into the car. I put the gel pad (that the VA had given me several months earlier to go with the scooter) onto the steel platform and climbed into the chair.

I haven’t gotten out since.

Not really, of course I have to get out, to use the bathroom and go to bed. But I do sit in it all day, everyday, and use it to get around in the house. It makes a huge difference, letting me store up the energy I’d have spent in walking (to the kitchen, to the potty) and use that for other things, like cooking dinner. The chair is PURPLE!!!!! (And those of you who know me, know that this is all that’s really important. Right?) It has a lift–and when the chair is in the highest position, I am taller than when I stand up. I had the joystick put on the left (many years of playing console games had trained me for a left hand manipulation of same). The chair can actually go pretty damned fast. I keep it on the very lowest speed almost all of the time. I only turn it up about 2 more notches when I’m going down the street and it’s a straight shot.  (BTW, that “light” shining on the side? Is the reflector, reflecting the flash.)

I am using the individual leg rests instead of the central platform for my feet. I can raise the leg rests to a comfortable position. The platform requires me to put my feet further back than the knees are located, which is not only not comfortable, it is damned UNcomfortable. Overall length is still shorter than the mobility scooter.

I eventually got the “real” pad for the chair. I have had the bracket installed that lets me have a safety flag flying overhead when I’m out. Oh yeah…out. I can go all by myself to the drug store, about 1/2 a mile away, or to the grocery store, down the block and across the street. ALL BY MYSELF!! Wowwee! So far I’m about 5 for 5 in getting into trouble when I go out in the chair. I’ve run it off the sidewalk pretty much every time–one time, I got axle-deep in mulch and couldn’t get out by myself. Two angels came over and lifted the chair back up on the sidewalk. In fact, each time I have needed help, angels have arrived. Have I mentioned just how much I love Eureka?

The tech from Western Rehab (Brian) is working on my desk for the chair. (He’s having to modify the one that was ordered; it was NOT workable as it was for my chair.) The tech from Broadway Medical, the people who are contracted to install lifts for the VA came over on Tuesday and spent 4 hours trying to get the lift pieces installed on the chair and then get the chair into the van. It fits, but just barely. It needs some minor tweaking–the crane’s arm needs to be lifted about an inch, shortened about an inch and the base raised about an inch, all of which will make the chair lift up high enough to be much easier to just push into the van. The biggest problem is getting it over the bump of the bumper. Beloved helped the guy grunt it into the vehicle twice, but everybody knows that he cannot do that by himself–and I cannot help him. So we’ve got to get the lift perfected. I will be doing some research to see if I can find an organization who will feel sorry enough for me to provide a “real” wheelchair-sized van. (The VA will pay for the cost of the modification, like putting on a lift.)

I am so very glad, and very grateful to the VA, for my wheelchair. It makes such a difference, even Beloved has commented on it. We are both a bit exasperated by not being able to put it in the car yet, but even as it is, is better than not having it. I still have to walk into the bathroom–no way in hell to ride the chair into there, and into the office, ditto no way in hell. Otherwise…it works great. I have a variety of reachers and grabbers to get things out of arm’s length.

I am still waiting for the ramp for the house, to get the chair in and out with a little more grace than I do right now. I can hump it over the threshold, but going out, I feel like I’m going to fall on my face with the chair on top of me. Coming home requires a bit of a “running start” and having the power up a couple of notches to have the “oomph” to get back into the house. A ramp will be nice.

Other excitement: I have applied for Social Security Disability for the second time, from the beginning step. Again. And they have already refused me. Apparently they have come to the conclusion that I can go back to work again. WTF? So I immediately requested a Reconsideration — which meant filling out the application form again. This time, I also filled out the Adult Function form, which in 6 pages explains why I just cannot go back to work, idiots. My lawyer from the first unsuccessful attempt is with me again…

And right after I got the news of denial and restarted the SSDI paperwork, I got the annual (you know, every 9 months or so) request from my Long Term Disability Insurance company, wanting to know if I’m STILL disabled. Same paperwork as SSDI, different forms so of course it’s not as easy as cut’n’paste from one to the other. BUT I R a smrt kitty, S M R T. I retained a copy of the annual report from 2013 (don’t ask me what’s happened to the ones in between) that I could just update with how much more pitiful I have gotten. The SSDI forms have gone to the lawyer, so that his office can mail them in and the LTD form has been emailed to the agent handling my case. I am DONE with forms. I have been having MAJOR anxiety with these hanging over my head. Now, everything I can do, is done. I can only wait for answers and they will either be “yes” or “no” and I will deal with any “no” answers when they get here. My stomach is already MUCH calmer and happier.

Anxiety is not a diet I would recommend.

Meanwhile…I am working with my primary care doctor to determine if I have myalgic encephelomyelitis. (ME, usually written as ME/CFS, where “CFS” means Chronic Fatigue Syndrome”). I see the Occupational Therapist sometime in the next couple of weeks to have a function evaluation. I have an appointment with a (ha, “a”, more like THE) neurosurgeon the first week in April to evaluate my neck and what we might be able to do with it. (He’s the only neurosurgeon in this area.) I’m hoping that he can also maybe do some neurological diagnosing of neurological problems…if not, then I will have to (oh dear gods and Dread Cthulhu…) make the fekking trip 5 hours down (and back) to the VA hospital in San Fran. The only neurologist I can see is down there. There is NO neurologist here in Eureka. So we’re talking 10 hours in a vehicle, staying over night because there is no way at all that I can go, have my appointment and then get back in the vehicle and come home. Beloved will not go with me; I will be taken in the VA shuttle bus/van. I will have to figure out how to carry all the things I will need on me and my wheelchair. I will not go to SF until I can get the wheelchair in the van because that’s how I need to get the chair to the Clinic to get on the shuttle. Oh, and all of this for what is probably a 15, MAYBE 30 minute appointment. Even if it’s an hour, the cost in my time, effort and subsequent PAIN is only worth it for the diagnoses of neurological disabilities I (may) have.

If I do end up going, I had better come home with a nice list of diagnoses that explain a lot of my symptoms: tremors in my hands; the whole body shaking I do if I stand for more than 10 minutes; the loss of concentration, memory issues, and so on. I will take all of the medical evidence I can get, to get Social Security paying me and the LTD people to leave me the fuck alone.

I also need to figure out how to explain to both of them that the reason my medical records don’t say, “she can’t walk, can’t stand, has panic attacks, hurts, hurts, hurts, has disturbed sleep” and so on is that *this* is my norm. Your doctor doesn’t write “patient is healthy, doing well, can walk, stand, has no pain” every time you see them. All that gets written is the changes in the norm and any new problem/s. Sigh.

Other than that, how was the play, Mrs. Lincoln?

The weather has been cold and wet, which has added to the “blahs” of having to deal with paperwork that will determine if I have to go back to work or not. (My doctor and I were talking about this and she said to me, “But what kind of work can you do?” Ummmm duh. I can’t.
Anyway, Beloved and I have both been ass-dragging for the past…12 weeks? Something like that. (He had a doctor’s appointment today and has lost 20 pounds in 6 weeks. And his blood sugar, which is what they were checking today, is back down to normal, not elevated into the “better start picking out which test strips you want” level. YAY for him!!)

I have been doing some writing for Medium.com. There’s a larger audience possible there, and so far, I seem to be well received. I have also finished my college course about Ancient Egypt (Penn State) and am now doing “Buddhism and Modern Psychology” (Princeton). I may have told you about this before, but I don’t remember, so here it is (again): There is a website called “coursera.org”, which offers literally hundreds of courses–for FREE, if you don’t care about the credit hours. You can get a completion certificate (credit hours) for about $49 per course. (Some courses have a different pricing because there are multiple classes in a “specialty” curriculum.) There are many schools that participate. The good part about not paying for it is that if you cannot finish the class, you are not out any money. It’s all computer based, so far I’ve only seen video lectures as how the information is taught. Ancient Egypt had a short quiz at the end of each week’s lecture. Buddhism etc has a midterm essay, which was done last week, and there will be a final essay in 3 more weeks. Total class time is 6 weeks. When I’m done with this, I’ll pick out another one. At some point, I may feel able to take 2 or 3 classes at the same time. But until then…one at a time is just fine.

So I’m over 2000 words and I’m running out of steam. Rather than throwing more coal on the first, I’m gonna stop this here and let you get back to your own life. Nice talking to you, I’ll try not to be so long til the next post!

Namaste!

The World Didn’t End (But it May Yet)

The election came and went, I know that you all are aware of who won. Major, major shock to many people and I was one of them. I spent about 3 weeks going through the Kublar-Ross grief cycle: anger, depression, denial, bargaining, acceptance. I’m hanging out in denial until we have actual proof in January that Lord Little Hands (AKA President Pussy-Grabber) is the Anti-Christ and the world begins to truly go to hell, driving in the fast lane and speeding, with the trunk full of TNT and a maniac at the wheel. I have nothing to bargain with and I don’t think that acceptance, full and peaceful acceptance is going to happen, at least for the next 4 years.

The transition has begun and He is already breaking campaign promises. Instead of “draining the swamp” (of all the old, corrupt, useless politicians), he has, as one poster on FB said, “Drained the swamp of swamp monsters, in order to restock it with newer, stronger swamp monsters.” There is not a single person on his Cabinet list that is not reprehensible in some way. And it’s either the height of stupidity or the most craven machinations of That Man to have assigned departments to the very people who will do all they can to destroy whatever cabinet they lead. Such as putting a very rich, very elitist woman in charge of Education, when her children all went to private schools and she doesn’t think that public education is necessary. (End result: only the rich will be educated, and I’m talking the 3 basic “R”‘s: reading, writing and ‘rithmetic.) Originally choosing a white supremacist as Chief of Staff. (I think that’s the right position. I don’t want to go check.)

The list goes on and is filled with billionaires and millionaires. So much for the “normal” people in this country. All of these people are a part of the 1% and have absolutely ZERO, zilch, nada, NO connection to the rest of the citizens. Life is about to become like the Chinese curse: “May you live in interesting times.”. My fears hover, ready to bloom into full-time terror and anguish; I try very hard not to think about what pushes the fear. So let’s move on to something more interesting, namely: ME. (hahahaha)

Last blog I told you about having an x-ray to find a hip impingement. It was there, on the film. I had gotten back to seeing my acupuncturist. In the time I hadn’t seen him, he had added a new person onto the staff. She is a message therapist, and what Pagans would instantly recognize as an Earth Mother. That’s someone who is motherly (caring, treating boo-boos, watching out for her children — even if they are neither her children nor even a child) and generally has healing powers, although these can be on a spectrum of specific healing. It may not be just physical healing. There’s still emotional, mental, and spiritual healing…and Earth Mothers can deal with all of them, although usually not more than one or two kinds per Mother. If that makes sense. Anyway, there was also a new routine for the session. R, the acupuncturist, stuck the needles in, put Chinese “Ben-Gay” on me and left. I laid there and let those needles do their work. Then C, the message therapist, came in and smudged me with mugwort. (Think aroma therapy, with the smoke of the mogwort being directed at my body. Mugwort has healing properties.) Then she removed the needles and gave me a short message, from hips to head, which is where my pain mostly exists. The first time it just felt great. I mentioned that I had fibro and she instantly asked if she was pushing too hard. I told her that I was hovering somewhere between “Ouch, stop” and “Oh baby, don’t stop.”

The next appointment went pretty much the same way. Except: as C was giving me the message, she suddenly stopped, one hand on my shoulder, one hand in the small of my back. “You want to be healed”, she said to me. “DUH”, said I. She explained that most of the clients just wanted to stop hurting. Then she said, “You BELIEVE you can be healed.” I just said yes. So then she did, for lack of a better term, a laying on of hands. C is a reiki master; reiki is a specific form of healing, with classes being taken from a reiki master, who leads their pupils through the process of learning about it and when they have achieved whatever it is that needs to be done, they are awarded the title of Master. (I don’t “do” reiki; my son and his wife do, having taken the classes. I have been “accused” of being a reiki master…I do healing, but not in any particular specific order of operations.)

So, as I was saying, C is a reiki master, and she placed her hands on several places–my feet, my back, my head; maybe others, I wasn’t paying close attention. What I was paying attention to was the new flow of energy through my body, that I haven’t had for several years. Think of it as stopped up drains. The water cannot get moving in a specific direction, so it just puddles around.  She “cleaned” the drains, and the water began to flow properly again. I know that not everyone understands this or even believes in it; that’s okay. I do, so of course it worked for me. Let’s just say that I have been in a better head space since then.

I let R know that I had been diagnosed with the hip impingement (you remember that? We talked about it way up^^^^there.) So he focused the needles to deal with that area because I was having terrible pain and could actually feel the hip “impinge”–like a burr on a cog, or perhaps a missing tooth on that cog–it goes around and when it gets to the imperfection, it slows things down for just and instant and then, with a little “jump”, moves again–until it comes around to that imperfection again. That’s what walking was like. So he did his needling, haha, and then when C came in the room, she told me that he had asked her to do some directed message (healing) therapy at the hip. When she was done, I could have cried in relief–there was almost no pain and I could walk with that little “click” of the impingement. Between them, the cycle of pain upon pain was broken.

Pretty wonderful, right? “But wait…there’s more!” I went and had an MRI of the hip for closer inspection and evaluation. About a week later, I have an appointment with my doctor, who reads the report of the MRI and tells me: “There is NO impingement!”. Coincidence? I think not. Believe it or don’t, I believed she could heal me; she believed she could heal me, and the impingement is no longer visible. And it’s not causing the pain it had been, at all. Trust me when I tell you that I am very grateful, however the healing actually occurred.

I got my flu shot at the same time I found out about the MRI. (Monday, November 6th.) I voted on Tuesday (with Beloved, of course). By Wednesday morning, I was in “full flu” mode: body aches, stuffy head, general “blahs”. And I had gotten my shot in the pad of muscle just to the side of the hip, above the butt. I’ve had shots there before without any problem. This time, I had an area that size of my palm (about 4″ square) swell up to about 1/4-1/2 inch above the rest of the skin in that area. It hurt like hell. That part lasted about 4-5 days. The results of the election also caused sufficient mental upset that I spend the better part of November being sick; sick enough that I didn’t do much of anything at all and couldn’t really tell you any of it because it was that foggy for me. Sigh.

I did cook Thanksgiving dinner, in small chunks with a lot of rest in between. Boiled the sweet potatoes to make mashed potatoes. Made sage-sausage dressing. Cooked two turkey thighs and a leg (for Beloved). I saved my Thanksgiving meat for the next day, because it was a major undertaking. Beloved had bought me a Dungeness crab! Here he is, prepared for an intimate dinner for moi. As you can see, he was 8″ from point to point and Beloved had asked for the biggest, heaviest crab…so he weighed in at almost 2 pounds. (With all of his shells, of course.)thanksgivingcrab-dismantled Now I’m going to assume a certain ignorance from my readers as regards crabs and the eating thereof. Those of you who know, bear with me. To eat a crab, you have to pull all of the legs, including the claw legs, off of the body. Then you flip it on its back, and begin pulling off what is referred to as “the apron”. These are the sexual organs; in the male, the apron is shaped like an upside down T and is relatively small. The females have a larger apron, with visible “feathers”; this is where she holds the eggs. After removing the apron, there is a small opening now available between the body itself and the top shell. You hold the back and front of the body in your hands, and with your thumbs in that little opening, you pull the back shell off of the rest of the body. Once that has been removed, you remove all of the gills (the “feathers”) and (optionally; there are some who eat this part) take out the intestines from the middle of the body, which is clearly divided into a left and right part. You break the two halves apart and just begin eating, working your way through all of the body. Get ALL of the meat, in the bodies and in the legs/claws. With a Dungeness, there is some meat in every section of the legs and it’s all worth getting. Claw and leg meat is slightly sweeter than the body. If you get good at it, you can get the claw out in one whole piece!

I have been complimented on my crab-picking. I had a 1/2 dozen of Chesapeake Bay Blue crabs–and when I was done, there was this tiny stack of shells (relative to the unshelled bodies). The waitress told me that she had never seen crabs picked so cleanly. (Apparently most people do not “work” for the meat. I was taught from an early age to clean it out completely.) Dungeness are a bit easier to clean out simply because they are larger overall then the Blue crab. Now I’m going to explain the “sloughing” process. Crabs are (obviously) a hard shelled creature. But they do get bigger. The process is this: first, the crab stuffs itself full of food, which in turn makes the amount of meat within its body to increase to the “very full larder” stage; this is because during the period of being “soft”, with a shell that is not yet harden and therefore protective, the crab will not eat. The second shell begins to form, like a thin layer of paper, between the body and the top (back) shell. When it is time, when all is ready for the slough, the crab will go to a safe spot and back out of the old shell. It will then be a soft crab, which is also good eating. It will eat its old shell to get the calcium to harden up the new soft back (and legs, etc). After a bit–a day or two, maybe (another fact I don’t feel like looking up), the new shell is battle-ready and the crab, which has not eaten during this period, is starving and goes off to find food.
(Side story: when the female crab sloughs, the male will cradle her in his claws and protect her from the predators who would like to have soft crab. When the male sloughs…she eats him.)

When picking a crab, you can see the evidence of either getting ready to slough, or, with small amounts of meat inside, a crab that had just sloughed. We don’t want to talk about sad things, so let’s talk about the crab that is getting ready to slough. We call that a “peeler”.  It will be noticeably heavy for its size and there will be a reddish-brown “skin” that clings to the inside of the back shell and over the body. There will be plenty of fat visible. We call the fat “mustard” because of its yellowish color. This crab of mine had ENORMOUS amounts of fat–probably 1/2 to 3/4 of a cup. You can see it here:
dungeness-crab-pate-fatYes, it looks gross. But for those of you who like liver pate, you will understand when I compare this “mustard” to pate. It doesn’t taste quite the same as the meat and it has that velvety texture of a pate. My grandmother introduced me to “mustard”, which is generally found up in the tips of the back shell.

There was an obvious and rather thick new shell on this one as well. I would guess that he was within 24 hours of sloughing. In other words, the PERFECT crab to have for a meal. Yes, the meat was packed in, quite full. Since I ate it as fast as I could pick it out, I can’t tell you how much meat there was. I’m guessing at least a pound. The taste was phenomenally and incredibly good; he was probably the best crab I have ever eaten. (And I’ve eaten quite a few. For comparison’s sake, I could eat 1/2 dozen of Blue crabs quite easily. My record is 18 or 19, but they were all relatively small and “light”–not empty like a just-sloughed crab, but certainly not a “peeler”. I have yet to eat more than 1 Dungeness at a time. The Blue crab is the VW Beetle of the crab world; the Dungeness is an 18 wheeler with a trailer. Om nom nom.)

Here’s a Dungeness, with a human for scale:
dungenesscraboldharbor1Please note that this is not a particularly large Dungeness, this is just about the “usual” size.
The only thing I miss is the Old Bay seasoning that is put on Blue crabs, although I have to admit that the Dungeness (usually steamed or boiled) has enough flavor of its own that I don’t miss that enough to get some Old Bay in a small bowl to dip the meat.
Thus endeth my dissertation on crabs. Onwards.

I still haven’t gotten my chariot yet; I do hope it will be here by the end of this month. I could really use it right now–and for the past month. I did see the Physical Therapist at the VA clinic. We discussed how I manage, what is becoming harder to manage, that sort of thing. She’s getting me a new type of sock-put-ter-onner. (I couldn’t make the first one work.) She’s also getting me some foam tubing, of various diameters, to cut into the proper length for such things as to be on my kitchen tools, to provide a larger diameter than the utensil’s own handle. I already have something similar to that for my eating utensils. (I bought 2; I am using one on the spoon I use; the other is on my crocheting needle to help me hold that longer.) The PT is also getting me a jar-opener which will save my hands and wrists when trying to open recalcitrant jars. There was even some talk of a new mattress for my bed–I got it in March. Between have my head up (for GERD/reflux) and my feet raised (for swelling), my butt has created this marvelous hollow, right in the center of the mattress. The new one would ostensibly be better able to deal with the focus of weight in one spot.

Beloved and I are both having more “bad” (achy) days because it’s winter in Eureka. That means a LOT of rain and cooler temperatures. But the difference between night’s low temperature and day’s high is only about 10-15 degrees. We’ve gotten into the mid 40’s for a couple of nights–but we are still getting the 70 degree days, just not as often as we would in the rest of the year. We’ve even had a couple of thunderstorms, which are not common here.

Not a lot on the calendar this month. A couple of appointments for each of us–one of mine is for the radiographic (?) ablation of a varicose vein in my left leg. Basically, it kills the length of vein and the blood then goes back and forth in the artery/veins that don’t have faulty valves.

No specific plans for Christmas. We will probably at least acknowledge Winter Solstice (Yule) and we will definitely talk to his family on Christmas Day. (We talk to them almost daily.) I might even talk to my parents over the holiday time. I suppose we’ll have something special to eat for Christmas Day, although we could as the Jewish people do on that day: go eat Chinese food. (LOL) New Year’s Eve is another “non” holiday; we stay to watch the ball come down (on our computers), share a toast of something bubbly and then go to bed. Or back to our computer games.

So nothing really earth-shaking to report. I will of course let you all know when my wheelchair arrives and how I’m doing with it. Stay warm, keeping getting out of bed every day. Blessings and peace to you all!

Current Events and Forthcoming Appointments

Life goes on, as it is wont to do. Sun rises, sun sets; minutes, hours and then days past.

My life tends to blur at the edges. Without a set schedule, going to bed and then getting up whenever I want to is decidedly a luxury. The only downside of this arrangement is that I lose track of the days and am always vaguely amazed that the weekend has come around again. If it weren’t for our appointments, I would never know what day it was. I keep the date on my computer specifically so that I can determine day of the week as well as its numerical annotation for the month.

We have had relatively few appointments this past month. I went to the acupuncturist, my psychologist, and for some testing. (More on that later.) Beloved had a couple of extra appointments, but his main obligations are group therapy followed by his game night. He is the God of the dungeons, the Game Master (or Dungeon Master, depending on who you ask) for a group of 8-9 folks who gather to play his game of make believe. Everyone seems to be having a good time–and it’s really good for him. He needs the activity to give him something to do. He has to prepare the next session’s events during the week. He will print out the cards that show the items the group can find or buy. He has a book that has a rough sketch of each encounter, but he works with it, modifying and adding as needed. This game has also given him a circle of friends…which the gods know is not the easiest thing to do when finances are limited.

I continue to be very grateful for the people I interact and communicate with on Facebook. I belong to several groups and have Pages of my own that I share with the world at large. So between the groups and my own timeline, I stay pretty well up to date on current events and world happenings. Of course the major subject these days is the upcoming election. I will be so glad when it’s over. The anxiety of not knowing who will be the President is a real and bothersome thing for me. If the GOP candidate wins, Beloved and I are not in a position to ignore the consequences of his campaign promises. Any substantive change to taxes, Federally funded social services and the economy in general could be catastrophic for us. Like so many Americans, we live on the verge of poverty. We are both fortunate to have healthcare. Beloved is on Medicare because of his disability and I get mine from the Veteran’s Administration. Neither of us can live anything resembling a meaningful life without the medications we require. If they become too expensive for us, our quality of life will disintegrate. I have enough things to worry about without the political uproar…less than 40 days and the question will be answered. Now if I can just keep my head together.

I’m going to go through my various diagnoses–bear with me if you’ve seen this list before. I have as a major diagnosis, fibromyalgia; I also have degenerative arthritis specifically in my spine, in two main spots: the lumbar part (right where the waist twists, where you bend over, near the kidneys) and the worst example of this disease in the neck, where 2 of my discs have completely disappeared. I have some other minor physical issues: asthma, GERD, IBD. that sort of thing. I also have clinical depression and a stress-anxiety disorder. Both of them interfere with me almost more than the physical problems. Depression has been a pretty constant companion for years, although untreated until 4-5 years ago. The stress-anxiety disorder is rather new and really bothersome to me. I can no longer be among large groups, any place with a lot of noise, or lots of children running around being loud. It overloads my brain, so to speak–and I begin to freak out and cry. The irony of this is that I used to be out with large groups of people, with lots of noise and children running around and none of it bothered me “back then”.

I also tire easily, but that’s more or less to be expected with the decrease in activity and the pain and then the meds for the pain. But life isn’t all bad–it’s worse than it was, but I’d still rather be living this life than being alone. I can’t imagine being alive without Beloved being with me. I do think that part of my unexpected trip down the road of disability stems from that while I was still working, still being the only one paying my bills, I was pushing through signs of the upcoming storm–but when I found Beloved, a part of my mind said I could relax and not worry about the roof or the food and then, bingo!, there I was…busted and no warranty.

The VA has been amazing about taking care of me. I’m beyond grateful for them. I cannot imagine having to deal with Medicare (MediCal, they call it here) with all the things I have needed and the meds I take. I know that I would not be on morphine to deal with the pain–the public healthcare does not give out opiates. And I can’t imagine life without them.

So I think I mentioned in my last blog that I had gotten a new pain–and the X-rays verified an impingement in my right hip. I also think I told you that when I finished getting my neck MRI, the technician pulled me out of the machine and for some reason, I’m not sure what, the table dropped about 2-3 inches–and caught me right across the middle of the back. I think that has done something to that impinged hip, since the pain is worse since that day. I go see my PCP on Monday and we’ll talk about it. I’m due to have an MRI for my hip within this month, so we’ll be able to compare that to the X-rays and see if there is anything worse.

In the meantime, after my last visit to the doctor and based upon our discussion, I have been measured and trained for my new form of transportation. I am going into an electric wheelchair. I wanted the ease of a joystick rather than having to reach out and manage the mobility scooter. That got tiring and painful, using the parts of my body that hurt the most. I also decided that I’d rather save the energy that I currently use up walking in the house for other things, like being able to do more complicated cooking. And with the hip hurting, I am really sure that this is a good thing. I’m not upset about it and maybe I should be, but I have always figured I end up in a wheelchair.

The occupational therapist and I think the physical therapist–anyways, 2 people from the VA clinic came to the house last Thursday and brought a “training” wheelchair. I did a little driving around, learned how to manage the curb cuts (where a driveway goes out into the street) and seeing how I’d manage in the house. I could get into the bathroom, but not back out…not surprising considering its layout. They measured–our van’s back hatch, fully open. They got the numbers off of the crane lift I already have to ascertain the weight capacity of it. They measured me, to see how high my foot support had to be, which chair would work the best for my ass and back. Then we talked about accessories! I don’t know for sure what will or will not be added as extra, but I asked for a visibility flag, a backpack that fits on hooks behind me on the back of the chair (and the hooks, of course); if there’s a lap desk, I want one. I also got to pick out 2 colors–so I might get a purple wheelchair!!! If not, then it will be red. So the 2 therapists will fill out and submit the paperwork, and it begins its travels through approval and procurement–and then it will be built just for me. So I’m looking at about 2-3 months before it shows up. Of course I’m hoping for sooner rather than later, since I sure could be using it now. Until it arrives, I will limp around the house.

I have also gotten my shower bench! YAY! and a gel pad for the scooter (which will go in the wheelchair in its time) and a clothing assistance device—basically a dowel stick with a cup hook on one end and a larger hook on the other. I’m supposed to use it to help pull up pants, get sweaters on, and so forth. So far, I’ve used it to turn off or on the overhead light. LOL

I do admit that while I’m not unduly sad at going into the wheelchair, it is a reminder that not only am I already disabled, but that I’m not going to get better–and may get worse. A person in a wheelchair is very often not even seen, since they are below the average eye level. People treat the handicapped very differently than the able-bodied and not always in a good way. The folks around here are amazingly kind–but there is some personal chagrin when someone who is obviously in their 70’s asks me if they can help. It will be interesting–and educating–to see the difference between being in the mobility scooter and in a wheelchair, in how I am treated and what unimagined things may happen. But I do know that if there’s a real problem, it’s theirs and not mine. I do what I have to do, in order to have some semblance of a life. And if that means riding everywhere, then so be it.

Thank you for letting me share. Peace and blessings to you all!

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!

 

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!