Ch-Ch-Changes (Turn and Face the Strange)

Where did the summer go? Time flies when…you don’t keep track of it.

I had my Functional Capacity Evaluation as foretold. I did what I could. The very first test was a grip strength test of both hands. The right hand can grip for up to about 25 pounds; the left, 35. A woman of my age should be able to grip 57 pounds. So I pretty much failed that first off. I sat, I stood, I picked things up and moved them around. I turned over wooden discs in a tray with first one and then the other hand. I walked, I knelt, I squatted. No, that’s a lie. I cannot squat. I can TRY to squat…but I will fall on my ass and never be able to get back up again in one smooth motion. So I demurred…because I didn’t want to fall and hurt myself, let alone have to scramble like a turtle, turning over and then kneeling to rise back up to standing. So everything I didn’t do because I knew that I would hurt myself trying…got recorded as “self-limiting”. I like to think that if I had gone ahead and done things, I would have flustered and upset the therapist administering the evaluation…blood has a way of doing that to people. Part of the reason I didn’t want to fall is not just having to get back up–but all the pointy hard objects I could fall into on my way down.

If you have nothing to do and want to waste 6 hours of time…find something other than a Functional Capacity Evaluation to do. But even with all of the “self-limiting”, the end result was pretty much what I’ve been saying all along: I am disabled, given enough medication and therapy (like literally years of it), I might return to some semblance of “normal” (at least as normal as I’ve ever been) but that is not going to happen any time soon. The evaluation itself was bad enough. The therapist had recently completed a course on a new therapy, “Dynamic Neurological Therapy” I think he called it…he described it to me in great detail. Not just once. Not just twice. Not even just three times. Oh no, he explained it to me in excruciating detail FOUR times. And he explained it using the same words to introduce it each time: “Now, your pain is real…but…it’s all in your head!” Then he’d go on to explain about the chemical process of thought, sensation and pain levels. Well, I had just finished my Introduction to Psychology a couple of weeks prior, so I understand about using mindfulness of the moment as a therapy, without any religious/spiritual context. My unhappiness with this is not just the repetition. When you say a sentence, then say the word “but” and add whatever, you have just negated the original statement. “Your pain is real…BUT…it’s not really, it’s all in your head and you’re just making it up.” Is what his statement ended up meaning.

But I did the evaluation and it’s over with now. I don’t expect to ever have to do it again. <fingers crossed>

That was in June. July…we stayed in for the 4th because it was overcast again this year. We went to the fireworks show last year when it was overcast; “ooh look, a red glow in the clouds! OOoooo!. We didn’t do anything particularly noteworthy the rest of the month either. Doctor appointments, swimming (pool therapy) for both of us, game nights. Eating out occasionally, going to the store, doing laundry. LOTS of time on the computers, since that’s our major form of entertainment / connection to the outside world. August also flew by at the speed of light as well.

I did finally make it to our local zoo one nice Sunday. I was restless and not wanting to stay in; Beloved was tired and not wanting to go out. So I gathered myself together and rode over to Sequoia Park which holds the zoo. It’s about a 10-15 minute ride to get there. As a veteran and a resident, I got $4 off the entrance fee! Woohoo! It’s not a large zoo, but what they do have is well done and the animals all look very healthy. There are some raptors–a couple of bald eagles and a falcon, all living at the zoo because they were injured (car strike) and couldn’t return to the wild. The biggest thing there are the two yaks. They have a decent flock of flamingos, a couple of gibbons, some spider monkeys, and some other small and harmless creatures. One of the most popular displays is the “river” area–there are tanks of salmon, looking at with their fishy eyes–or, as I like to think, staring with horror at the animals across the path from them: the River Otters. The display is built in such a way that there is a plexiglass tunnel under the river part, so the kids can go in and look up, at the otters swimming overhead. Very cool. I got some sweet potato fries at the zoo cafe (open to the public!) and perused the gift store. I was out for about 2, 2.5 hours–all on my own!

The wheelchair continues to be a godsend. I can ride it over to Henderson Center, about 2 miles NW of us, which I’ve done a couple of times now. I had to take my laptop to the computer repair store as the memory sticks were dying and things were not running well. Both sticks needing replacing, but now I have a computer that works, yay. I also got a chance to look in the “Big and Tall” men’s shop and will take Beloved there when he needs new clothes. The manager was telling me about the store, I asked how large his sizes went up to…he told me 10X. He asked me if I wanted to see a muscle shirt in a 10X; I pointed out that it would look like a tent without poles, haha. Fortunately my dear is not that large…and they did have a bathrobe a size larger than he that I think he should have. He’s okay with his robe being bigger…and aren’t we all?

I also discovered the Japanese market, 3 doors down from the clothing store. Yes, I bought stuff, yes I bought stuff I didn’t need, but you should see the adorable baby tongs I got for picking up tsukemono (Japanese pickles). I also got the makings for miso soup, which came out real well. And yes, I will be going back.

Tsukemono is a new thing in my kitchen. It is the catch-all term for any pickled (vinegar or salt cured) vegetable dish that accompanies Japanese cooking. A bowl of rice, a little piece of fish and some tsukemono can be considered an entire meal. The idea is to make small amounts of fresh pickles–none of them will keep very long, unlike Vlasic or Claussen’s. And because they are fermented, there are probiotics and so they are a good way to get raw veggies. My entire family has a *thing* about pickles–we eat them, we eat pretty much every kind, and we will devour them to the last–so I am enjoying trying out various ways of making them. (That don’t involve lime, cooking, mason jars or pickles for an army.) I made a sort of cabbage/carrot/ginger salad with a soy sauce, rice vinegar and sugar dressing; I made a salted pickle out of baby bokchoy and green onions. I also took thin slices of Persian cucumbers and rubbed a little miso and water over them, then let them sit about 6-8 hours, and rinsed the miso off very well. They were good–salty and sour. I want to make some with Daikon radish, although I have some regular red radishes now that I could slice thinly and do something pickle-y with. Hmmm.

So Beloved has lost about 3-4 of his Friday night gamers…and set about to recruit me. Yes, I caved in and agreed to play. So now I shall be gaming two nights a week. This game is based on Dungeons and Dragons, (Pathfinder to be precise), so there are lots of dice with lots of dots to count. I am Rowan Morhana, a Shoal Elf arcanist. (Think sorcerer or wizard without elemental or religious associations for the magic I can do.) Beware, evil doers! He’s still looking to get 2 or 3 more folks in, so we may have a quiet couple of weeks as the 3 of us still there do minor things while waiting for a party of adequate size to go back into the dungeons after the good stuff. The Star Wars game continues to be fun. We’ve added another female gamer–one of the guys’ girlfriend, who we cajoled and pushed into playing instead of just watching. The two of them might be interested in playing on Friday as well…

Turning now to more medical things. I have mentioned being in therapy (have been for most of the past 3 years); I think I also mentioned that my therapist had identified my parents’ methodology for child-rearing as abusive. I’m still trying to get my head wrapped around that. I can understand it logically, but to really have it apply to me seems…like overkill. I mean, it was abusive. AF. My parents were, and still are, very controlling, very authoritative and still trying to tell me how to live my life–after I left their house almost 40 years ago. Sigh. They stayed in Corpus Christi for Harvey and frankly, I didn’t worry too much about them. Yes, they survived, and better than a great many other people…my mother was bitching about having to clean out the fridge and freezer because of the food all spoiling…I pointed out that she still had a house. Shaddup. I can’t get too choked up about their dying because I know that it’s the very thing they are hoping for.

Although my mother did inform me that she wouldn’t be dying, Jesus was coming back and getting her Himself, when he comes for the Rapture. In her lifetime. I pointed out that every generation had thought Jesus was coming back at their time, since the Apostles’ time. She insisted that the “signs are all there, if you just look”. I didn’t try to point out that every generation had said *that* since the Apostles. And now, get ready for the sneaky screwball pitch she threw next: “I’ll be gone, Daddy will be gone, your brother and his wife–and their sons–will all be gone (in the Rapture), so you’ll go to Texas and take care of our house and stuff, right?” Pardon, what? Actually, what I replied was, “You’ll never know, will you?” and let it go. Regardless of just how the world ends, regardless of when the Rapture takes place, if ever, regardless of pretty much everything else, one or the other of us may be very surprised at what the afterlife actually looks like. I’m betting it will be my mother. But don’t take my word for it.

From psychology to psychiatry: the new psychiatrist is trying to kill me. He tripled my Wellbutrin (bupropion) to 300 mg and upped the Cymbalta (duloxetine) from 90 to 120 mg. So when I was having visits with my primary care doctor, and they take my blood pressure…it’s going up and up, to reach a stunning 167 over 92. WTF??? I get put on Lisinopril (high blood pressure med) and HCTZ, a “water” pill. I’m taking my blood pressure every day and it’s still pretty damned high. A dim lightbulb went off over my head, and after I wiped all the dust off of it…I went over to WebMD and looked up the side effects to my two psychiatric meds. Both have HUGE warnings about not (that is “not” as in, Don’t Do It) combining those two particular drugs. Because (wait for it) they will cause high blood pressure. I’m happy to not be suicidally depressed, but I don’t want to stroke out and die–or worse. And yes, there are worse things than dying after a stroke and I’ve taken care of people who have survived theirs…but are now hemiplegic (paralyzed down one side) and require a lot of assistance–and may not be able to speak or feed themselves or go to the bathroom alone. I’d rather not.

Sooooooooooo Dr. Kate made some med changes. Some MAJOR medications changes. Here’s what that looks like:

1. I went to MediCann and got my 215 card, aka Medical Marijuana. Then I went to the “pharmacy” (real name: The Humboldt Collective, which can be abbreviated as THC, hahaha, get it?)and got me some medical weed… and it’s a freaking miracle.

2. I stopped taking morphine, and have not had any since the end of June. I am back to using Vicodin for the “breakthrough” pain which makes everyone happier. The marijuana actually deals with all of the incidental pains, leaving me to isolate and identify the spinal pain alone–and handle it with Vicodin. I am more pain-free now than I have been in quite literally YEARS.

3. The strain of marijuana I am using is very high in CBD (which is the medicinal property part) and low in THC (the part that gets you high), so this is definitely medicine and not getting stoned. On the other hand, I’d rather be stoned than in pain.

4. I do take some pure THC products –that specifically deals with anxiety and pain. I am generally sleeping better and longer–because I am not being woken in the middle of the night by pain. The doses are still lower in THC than the bud that’s being sold for *ahem* recreational purposes. 

5. I am using edibles. For CBD purposes, I have a little bag of bud, to eat raw; I have a small bottle of an oil-based tincture that is sublingual. I also have a super-concentrated oil that uses a “serving” about the size of a grain of rice and is rubbed over the gums and tongue. For THC only, I have mints and hard candies for when I am out and cannibutter for when I am home. (And “cannibutter” is cannabis and butter; it’s concentrated enough that the 4 ounces of butter has 230 servings. I put about 1/2 tsp on a Ritz cracker (okay, an organic version of the Ritz, from a company called “Late July”) and eat that right before bed.

6. I reduced the Wellbutrin to 150 per day and the Cymbalta to 60. My blood pressure was 116/72 at the doctor’s the other day. No more morphine, no more Tramadol (trazadone, sleep/anxiety med).

With the chain of never-ending pain finally broken, I am nowhere near as depressed as I had been and my anxiety is also a bit lower. I can actually think about what I might have to do if I don’t get approved for SSDI without totally freaking out. I am not as foggy, I’m able to concentrate a little better–although I do have severe mellowness that might seem like being foggy. 😀

Life is definitely at a higher quality than it has been in a very long time.

I see the psychiatrist this upcoming week and will inform him of the changes I’ve made in the meds and why. Hopefully he will help me find a better answer than continuing to take meds that interact so badly–even though the Wellbutrin has worked very well for my depression. (And the Cymbalta was doing good for the fibro…but together in large enough quantities were bad, m’kay?) I saw my surgeon last week about (finally) getting the varicose vein in my left leg taken care of (the procedure is called “ablation”, here: https://www.radiologyinfo.org/en/info.cfm?pg=varicoseabl). It’s been long enough I’ll have another ultrasound test of both legs, to ensure that there are no deep vein thromboses, and to pinpoint the vein/s that need to be ablated. I have a real problem with swelling in both legs so it will be good to have this done and over with. I have a follow up appointment with my PCP after speaking to the psychiatrist (to adjust meds if necessary after psych meds are adjusted so that I don’t have a massive brain hemorrhage from them) and then my regular podiatrist appointment (he cuts my toenails for me). I am waiting for a new (further) approval of pool therapy to get back into the pool. Oh, and I STILL do not have the wheelchair ramp. One more thing to mention to the doctor when I see her.

How has all this affected my life? Well, I’ve been cooking dinner 3-5 times per week, instead of barely making it once in that same amount of time. I am making meals that are a little more complex; for example, we’ve had Japanese (Tuna ahi sashimi, tsukemono, and homemade miso soup), Mexican (fajitas burritos with frijoles); Chinese (stir-fried rice); and Italian (twice: once it was fresh-made red sauce with Italian sausage, garlic, onions, tomatoes; the other time, white clam sauce on linguine). We went to a BBQ at one of the other gamers’ home a couple of weeks ago and I made fried corn and homemade hummus to share.

Hummus Recipe:

There is no reason to buy hummus. It’s VERY easy to make. It does require a blender…

Use:

1 16 oz can chick peas, drained

1 16 oz can chick peas, NOT DRAINED

1/4 c sesame seeds

1 clove of garlic, or to taste

salt and pepper

2 T olive oil

2 T fresh lemon juice

Blend until smooth and combined. Pour out onto a dish and drizzle a little more olive oil if you like.

Using this as a base recipe, you can then have alternative flavors by adding any of the following:

1 T curry powder

OR

2 tsp basil

1/4 c grated Parmesan cheese

(when complete, drizzle with oil and sprinkle pine nuts on it)

OR

Make original recipe, then stir in chopped roasted red peppers

OR

2 tsp basil

3 or 4 sun-dried tomatoes, rehydrated in a little bit of hot water and then chopped into pieces; blend with other ingredients and then drizzle oil, add some saved pieces of tomato on top

OR

1/4-1 tsp cayenne (depending on heat wanted)

Put in refrigerator overnight; cayenne takes a little while to bloom!

OR

Increase lemon juice to 1/4 cup; blend as usual, and then add 2 T poppy seeds

OR

Substitute 5-6 roasted* garlic cloves for the fresh cloves and blend as usual

OR

Blend as usual, then add chopped nuts

OR

Use your imagination!

BON APETIT!

And Fried Corn: 

Fried corn:

2 cups of corn kernels (frozen, not canned)*

2 strips of raw bacon

Salt

Pepper

 

Cut bacon into thin slivers across the short side. Put into frying pan and cook until crisp. Using about 2 T of bacon grease, or whatever is in the pan, add in corn and stir occasionally until corn is cooked. Salt to taste, add lots of fresh ground black pepper.

*You can use fresh corn: 2-3 ears, shucked and de-silked. Wrap in a towel that has been wetted but wrung out. Put into microwave for 4 minutes. Be careful taking them out–it WILL be hot. Let corn cool and then cut from cob. (Cut the stalk end to be flat; stand the corn on that end and CAREFULLY, using a sharp knife, cut from the tip of the cob, down to the bottom, cutting just at the bottom of the kernels. Done properly, you should see only an empty cob when done. If not, scrape the knife from top to bottom, dragging out the bits and pieces that were left.

Serve immediately or prepare ahead of time and then reheat. Makes a good dish for a potluck, increasing quantities:

6 cups frozen corn kernels

1/2 pound of bacon, cut into thin strips across the short side

Salt and pepper

Serving size: 1/2 cup, makes 4 servings. (Potluck size makes 12 servings)

So more cooking. I am also actually making some progress on the sorting of shit I mean stuff. I still tire easily; no muscle tone, no endurance. I’ve been told that the changes are obvious, that I am looking better. I guess so, if I’m not sitting there grimacing in pain all day. Apparently I even sound better, as my psychologist and I have agreed that I will continue to see him until the end of the year, and then we will make a decision about whether to continue or not. He may very well retire then, so it may not be much of a decision for me. I think I’d like to find another therapist. I like the guy I’m seeing, but I do get the feeling that I am giving him therapy almost as much, possibly more, than he does for me. And I’m not getting paid for it.

Oh, that reminds me–I have been following a writer on Medium (dotcom) who is blogging about her therapy and new diagnosis of disassociative personality disorder. She’s about 6 years older than I am and we’re talking about trauma that occurred when she was 7 (sexual abuse at the hands of a neighbor) that shattered her and has caused problems for her all her life. It’s an amazing story and I am very much respectful of the effort this requires at any age, but especially at a later one. So I often comment on her writing, and recently I mentioned how my childhood had been and that I was also trying to deal with the idea that my childhood was NOT normal (as hers was not). I told her that “I am an empath”–and she replied to me, saying that when she hears someone say that, what she really hears is that this is someone who had to develop an ability to predict what someone else meant or wanted and to meet (or exceed) their expectations and to never, ever make them angry–in fact, to prevent it at most any cost. So I am also trying to absorb the concept of being an empath as a childhood survival skill. I can’t argue with the idea of it…makes sense to me!

We’ve had some really beautiful summer days–clear, blue skies, 80+ degrees (which is a freaking heat wave for Eureka!!) and have had the house open to let it air out. I just wish the traffic wasn’t so loud–we live right on the corner of our street and the main road, so we get to hear all of the commuting traffic. It’s enough vehicles that they’ve just erected a new streetlight at the next corner. This is the time of year that is particularly lovely here and will last into almost October. Then it will get cooler again and it will be rainy season (or winter) all too soon. Time does insist on moving forward.

That should bring you up to date on what’s been going on. I’m off to make beefy mac’n’cheese for dinner. Laundry to do tomorrow. And then being an elf again on Friday. Just the regular routine of normal (okay, what passes for normal in MY house) routine.

Peace and blessings to you! (Two photos of our beach; one from 2014 and one from 2017. We’ve lost a lot of beach real estate.)

From the van, looking at the ocean, 2014
From the van, looking at the ocean this year

 

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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!

Getting Poked and Mauled

I have mentioned going for acupuncture before–but it had been about 8 or 9 months since I had last seen R to be stuck with needles. I got my new referral and this one is more realistic: I have 48 visits and 365 days to accomplish them. At the current rate of twice a week, it won’t take me that long.

He made some changes while I was gone. He hired a massage therapist, C. So the new routine is to start with R, getting needles wherever needed. Then he paints me with the “Chinese Ben Gay”, points the heat lamps at my feet and wherever else I particularly need it and he leaves. I lay there and contemplate whatever comes to mind. After a while, C comes in and she smudges me with mugwort. (Smudges means she lights the herb on fire, then blows out the flame. The smoke that comes off is what she then lets “fall” on my body. Think of it as aroma therapy.)

Once she’s done that, then she takes out the needles and proceeds to give me a mini-message, from neck to hips–which is where I need it the most. Yesterday’s session went just a little differently at this point. Those of you who think like I do will understand; the rest of you just have to stop giggling over the New Age “Woo-Woo” stuff and try to understand.

C was massaging my back and she stopped, her hands still on me. “You want to be healed”, she said. Duh! She told me that most people just want to feel better. Then she placed her hands on me in several different places–the feet, the nape of my neck and the small of my back, and on my shoulders. She didn’t massage–she sent energy into me. I could feel things opening up that hadn’t flowed in a very long time. It’s the sort of thing that just happens and when you try to put it into words as I am doing, loses something in the telling.

It was profoundly spiritual. I am an empath, I heal others in this same manner. But I cannot heal myself. So to have this done for me, from her generosity of spirit, was a very emotional moment for me. I find it hard to even know which are the right words to describe what happened. It felt like she opened the doors to my own energy sources and set them free again. I could feel the energy flow in from her and then…I could feel my own energy moving around.

I am using the words I know and I am sure not everyone who reads this will understand what I am trying to convey. For those of you who follow a more “mainline” religion, think of it as a healing from the Spirit. More of a response to a request than a miraculous rising from the dead, but still, as I said, very spiritual. A sacred moment, indeed.

There were hugs all around when I came out of the treatment room. I told R that hiring her was the best thing he had done–and he agreed. I went out to the car where my beloved was waiting and tried to explain to him what had happened. He understands it, in a more secondhand way–he does not see or feel energy the way I do. All he does within the Craft, he just does without conscious focusing. But he got it. And then, poor man, he had to listen to me burble and chatter from my energy high.

We went to get something to eat–getting centered and grounded again by putting food into me was a good idea. We went to the local Mexican restaurant and I ordered a grilled chicken salad. The food was amazing. Not that it was any different from any other time, but I could taste it differently, if that makes sense. All of my taste buds were …enhanced?…more awake? Whatever it was, the meal was especially delicious to me. I managed to eat a lot more than I usually do.

And per R’s suggestion at some time in the sun, we rode out to the beach. We opened up the windows and just sat in the car, watching the waves. We had a seagull land on one of the big rocks (that separate the parking lot from the beach) right in front of our car. He stood there watching us for some time, before finally flying off to do some fishing.

That was yesterday and today I am still “buzzing” to a certain extent. It’s not that there is suddenly no pain. Pain has always been, and I’m fairly certain will always be, a constant companion. So I wouldn’t say there was some miracle cure for my body. But I feel better in my brain than I have in…forever. If all C can do is help drive out the depression or at least shut it down so that it doesn’t ooze over all of my thoughts, I will consider it a blessing and more than I could have ever hoped for.

The change is internal, within my mind and heart. I see them again tomorrow and it will be interesting to experience what else can happen when you have two people who are both walking a path very much like mine own. Their world view coincides with mine, so we are, as the saying goes, in simpatico. It always amazes me how I am led to those who understand me when I talk about the esoteric things like energy flow and my connection to the Universe–and thereby, my connection to everything and everyone within that Universe.

Let’s see if I can explain that a little better. When I first met R, it was like greeting an old friend. There was no hesitation, no guarded speech; just the meeting of minds that think very similarly. Likewise with C. I don’t have to be “discrete” about my Pagan life. (Like with my parents. We never talk about it because if we did, they would have to question their own religious views–or — and this more likely, just shut me down because I’m going to Hell.) His office and treatment rooms are very welcoming to me, with Pagan symbols and “rocks” (chunks o’ crystals) all over the place. He has music going all the time, best described as “New Age”. You’re not going to hear anything you really recognize unless you listen to the same sort of music.

Apparently I’m still burbling. Let’s just bring it down to this: I went and had acupuncture and massage and I’m feeling clearer and better in my head because of it. I’m looking forward to tomorrow’s session.

Namaste and Peace!

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!

Living in an Azure Haze

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

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

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

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

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

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

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

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

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

 

Summertime in Eureka

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

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

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

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

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

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

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

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

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

Namaste!

 

The Circle of Life (With a Disability)

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

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

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

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

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

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

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

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

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

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

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

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

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

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

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

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

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

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

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

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

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

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

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

Namaste!

 

Singing about the Home Health Aide

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

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

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

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

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

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

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


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

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

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

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

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

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


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

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

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

Namaste!

The Pain of Being Touched and The Heartbreak of Not Being Touched

Fibromyalgia has been known by many other names, including chronic rheumatism, myalgia, muscular rheumatism, fibrositis, myofibrositis, and spinal irritation. The list of associated symptoms is an impressive one–never less than 3 and frequently a lot more than that, a virtual litany of problems that relate back to that single diagnosis. Whether your doctor is sympathetic and refers to it as “fibromyalgia”, or he says that “fibromyalgia is a ‘junkyard’ term” (which my newest doctor actually said)…at least physicians seem to agree that the predominant symptom is chronic pain. Which they are required to treat, according to the law.

“Chronic pain”. Two short and simple words that fail utterly to accurately describe the reality of life with never-ending pain. “Chronic pain” is like a password, the secret code word that opens the portals of an exclusive club. Well, not that exclusive. This disease affects between 2 and 4 percent of our population, mostly women. Men who are diagnosed with fibro may find it difficult to get the proper treatment they need because it is associated with women’s health. (Here is a good site to use as a starting point, either for you or to help explain fibro to your family and friends.)

If you’ve had fibro for more than 10 minutes, you know about the “tender spots” and “trigger points”. You’ve probably heard about “soft trauma” and a handful of other terms that all basically mean the same thing: pain. Doesn’t matter how it gets started, only matters that it never ends. Even with medication, the pain is always there, just waiting to take center stage again. You have to choose between having a clear head and ability to think coherently but suffer the pain, or take enough meds to reduce that pain to a murmur in the background…while you are literally Dopey, sleepy and basically not safe to operate any machinery–from driving a car down to using the toaster.

Chronic illness of any sort takes over your life. Chronic pain just makes the inevitable losses that a chronic illness requires that much more…well, painful. To be blunt about it, certain chronic illnesses (or more accurately, “chronic medical conditions”, hereafter referred to as “CMC”) are visibly limited–people in wheelchairs, missing limbs, paralyzed, or blind. Fibromyalgia is just one of the invisible conditions that are as limiting, as devastating as being paralyzed. With these invisible CMCs, someone can’t just look at you and realize that you have limitations.

And if you thought the list of associated symptoms for fibro was long…the list of what it limits, the things it will steal from your life is longer. Much longer. Chronic pain affects everything you do–or don’t do, or cannot do any more. And I’m not talking epic events. I mean things like cooking dinner, making a bed, washing yourself. What other (healthy) people do every day without even thinking about it–requires planning and adaptation for those of us with any CMC.

Receiving a diagnosis of a CMC is like being told your mother died. You have to go through the Kubler-Ross stages of grief: anger, depression, denial, bargaining and acceptance. And there is no time frame for any of the stages, nor do they necessarily line up in that particular order. There is frequent overlap between two or three of the emotions listed. And sometimes, you just don’t get past one of them…maybe two. And sometimes you’ll think that you’ve gone through them, arrived at the end and have accepted the loss of your old life–and then something happens that make you realize you were fooling yourself. And the grief cycle begins again.

Depression is the symptom that is almost synonymous with a CMC, particularly one like fibro that has so many limitations. Why wouldn’t you be depressed, when faced with a body that never stops hurting somewhere, with new inabilities cropping up, when you realize that the life you thought you’d have can never be, no matter how hard you try? And depression is anger turned inwards. Our society teaches women in particular to be soft-spoken, to be gentle and to never, ever express such strong emotions as anger. Fuck that. You heard me. If you’re feeling angry, you have every right to express it — loudly, with a lot of swear words, or however you want to. The only caveat is that your expression should not hurt you–or anyone else. So suicide or murder are not appropriate expressions of anger. Throwing china can be, if you’re willing to clean up afterwards. (Or if you have a loving someone who will hand things to you for you to throw and will then clean up for you.)

Be angry. Feel depressed. Grieve for your life, because it’s changed completely the moment you truly acknowledge that all these vague symptoms add up and your doctor has diagnosed a CMC. You could do what I did, which was to announce loudly and in front of other people that “I will not allow this disease to define who I am.” Right. Within a month, I realized that “this disease” had been defining my life for literally YEARS. I figure I began having fibro symptoms perhaps as young as 13 years old, but definitely by the time I was 15. I had the tender points–couldn’t stand the boys coming up and poking me in the ribs. I never laughed, and when they complained that I didn’t react “properly”, I told them that it hurt. Which it did.

I have had vague aches for as long as I can remember. While I was young I could just “push” through them. I managed a 4 year stint in the USAF; got married, had children. But looking back from this point in time, I realize that I began accommodating my aches (which were growing into pain) in a variety of ways. For example, I would clean the house. You know, dust and vacuum, put things away, take out the trash. But I did not do all the tasks in one efficient blur of cleaning. I’d work for about 30-45 minutes, then sit for about 15 before resuming the chores. This is when I was but a mere child of 28 or 29. And so gradually I didn’t notice it, that 30-45 minutes of “up” time got smaller and I required greater time to rest.

The aches had gotten full grown into pain, on a very regular basis. It was localized in my hips and knees so I wasn’t thinking “fibro”–hell, back in 1992, no one used that term. I did go to a rheumatologist, told him I had pain in my knees and hips. I got spend $500 for him to eventually tell me that I had pain, located in the knees and hips. Hot baths and aspirin were his prescription. I had already been doing that–and there’s just so much time you can spend in a bathtub. And so I lived on, making small adjustments as I needed to but never thinking of them cohesively as limitations because of my health.

Time passed, as is its usual manner; the kids graduated high school and went out into the big world. I lived alone for the first time in my life. I kept the house clean–but it was 10 minutes of task time, then 20 or more to rest before hitting the next 10 minute task. I began to have neuropathy–a fascinating pain, more like hot lightning than stabbing or thudding. I was becoming (even more) clumsy–my father used to tell me that I couldn’t walk and chew gum at the same time without falling. I began avoiding stairs whenever possible. My sleep patterns were fractals, at best. I had worked night jobs for 6 years and figured that the 4-6 hours I was sleeping was because of that.

I have had stress incontinence since the birth of my first child. (Thanks, kiddo.) Suddenly, I also had IBD (or IBS, depending on whether you consider it a disease or a syndrome). I would have no warning, no cramping or gas to let me know I’d better head for the loo. So when the first sensation of pressure appeared, I’d have about 3 minutes to find a porcelain receptacle or I would, to be grossly blunt about it, I would shit myself. Dear gods, I was only 46ish and I was not ready to be wearing Depends…

In 2010 I met and married my dearest love. He also has CMC, both physical and mental. So he had a very good relationship with his doctor, whom he had been seeing for about 7 years. He took me in for what was my first real physical since…the Air Force? That was in June. For the next 4 1/2 months, I began to really pay attention to my body and what was going on. I had quite a list of things…damn. I did exactly the wrong thing and went onto WebMD to check out the symptoms. Each item on my list had its own list–but they all overlapped at “fibromyalgia”. So I went back to the doctor and told him what I had discovered. And he told me that he had thought I had it, the first time he saw me. Well, gee, Doc–ya coulda saved me a lot of time if you had just said it then. But he also told me that he preferred to have his patients identify it for themselves because it was still considered a “throw away” diagnosis, something to tell a patient, giving their problems a name and make them go away.

I have to say that giving my symptoms a name seemed to open the floodgates of fibromyalgia. It poured over me and flowed into every single aspect of my life. It seemed that by admitting I was sick, I was suddenly aware of just how sick I really was–and apparently had been denying, “pushing” through it for quite a while. Within a year, I started using a cane for stability and had to stop working. Within two years, I was barely functioning as we experimented with the necessary medications to get the right ones at the right dose. At year three, I was in a really bad way because the VA doctor I was seeing then removed me from pain meds and then overdosed me on my neuropathy pills.

At that point, I was also dealing with Beloved’s month-long stay in the hospital–caused by gross incompetence: the doctor sent him home three times without addressing the reason we had gone there in the first place. He was having intractable vomiting and couldn’t hold down anything–and that went on for 3 weeks. You can die from dehydration, you know. So needless to say, I was an emotional wreck–which of course affects the body. I ended up at the main VA medical center, with instructions to be admitted for psychiatric evaluation. I had every sign of a panic/anxiety attack, and the most beautiful British accent. I’ve told you about it before so I won’t go into the gory details here.

We apparently moved, although I barely recall the cluster fuck of getting our apartment emptied out. We arrived in Eureka CA on November 2, 2013. Our problems haven’t gone away; some have gotten worse. I have had my adjudication with the Social Security Administration’s judge–and been “declined” again. I will now move up to the appeal board–and if they also “decline”, then it’s into Federal court. With the move, I of course have had to change lawyers and the new one inspires trust in us that we can do this, and that I will (eventually) be declared “permanently disabled”–and collect SSDI. (Could take up to 4-6 more YEARS. Erk.)

In the meantime, we are living on just Beloved’s SSDI check, food stamps, food pantry–and the incredible generosity of his parents. We do not regret the move–if we were still in Northern Virginia with all of the same things happening…we’d be living in my in-laws spare bedroom.

So actually of this has been to set the background for my main discussion: The Pain of Being Touched and the Heartbreak of Not Being Touched. My story is not unique; anyone with a CMC has a story like it. Since I know fibromyalgia best, I’ll just use that from now on–but if you have a different chronic condition, just substitute the name of yours.

Chronic pain, as I said in the beginning, is completely inadequate to explain what the person with chronic pain has to live with, has to deal with on a daily basis. It’s the sole indicator of whether you’re going to spend the day in bed or if you can actually make some chocolate chip cookies for your grandchildren. Chronic pain dictates if and when you shower, wash your hair, actually get dressed (in real clothes and everything!). And they aren’t kidding when they talk about tender points and trigger spots–what would be an incidental bump for someone else ends up causing such pain that you are now on the DL and the coach has to send someone else in to play for you.

Chronic pain makes all of your choices: will I type emails to my friends, join discussions on Facebook, play solitaire–or watch NetFlix because I can’t do the necessary hand motions to do those other things. Will I be able to concentrate enough to actually read (and retain) a novel? I want to finish crocheting the blanket I am making for my grandson. Begun before his birth, it–and he–are now 3 years old. I also have another grandchild that needs to have a blanket from me–and my grandson will have a sibling next May. That makes me 3 blankets behind.

Chronic pain. Do I have enough energy to essentially ignore the general “normal” level of pain, medicated with my good friend, Vic (Vicodin) that I can cook a hot meal? I was going to be a personal chef; I made gourmet foods–now, I am just a cook. Nothing wrong with being “just a cook”, but for me…it’s a demotion. And if I am not able to cook, I cannot justify spending grocery money on going out for Chinese. But we (too) often end up doing it anyways.

But never mind all of that. I know that having fibro means major–and endless–changes to everything in my life. I get that part. What snuck past me was that having fibro means enough pain that it hurts me to be touched. I’m not talking “punch in the face” touch, I’m talking the gentle pressure of a hand on my arm, the enveloping joy of a hug. Fibro means not extending my hand when meeting new people because the shaking (and the sometimes crushing grip) hurts me. It means not cringing when the sweet puppy leaps up into my lap.

Chronic pain has locked me away from touching, from the sensation of my flesh and someone else’s flesh joined in friendship, comfort–and yes, in making love. My dear Beloved knows that I hurt, that it hurts to be touched. So he’s very careful to … not touch me. He will rub the back of my head as he passes by, or pat my hip when we’re going to sleep. But hugs and kisses, what used to be a steady diet of loving touch…not so much any more.

I am a very tactile person–what a lot of people refer to as “touchy feely”. And chronic pain, damned chronic pain…has made my own body a prison that excludes even the most casual sensation of flesh on flesh. And that most intimate sensation of flesh on flesh doesn’t happen at all… Making love is all about flesh on flesh, the intimate bonding of two people, a ritual of love that strengthens their commitment even as it celebrates their union. Denied to me. By this unending, godsdamned, fucking chronic pain.

I need to be comforted, I need to be touched and petted and yes, physically loved by my husband. I want to hug my children, grandchildren, friends, people at church. I want to shake hands when I meet someone. I’d love a massage. I would LOVE sitting snuggled up to Beloved, with his arm around me. I want a dog.

I literally ACHE with the need to touch and be touched. Skin hunger overwhelms me and I’m starving for human contact. And then Chronic Pain rears its ugly head and reminds me that I will have to choose between more pain with contact…or no contact and no worsening of pain. Pain is a powerful training method, used with incredible success for many years in many different places and circumstances. If this was inflicted by an external source, I’d have something to rebel against, have a revolution to free me again. But alas, my tormentor is me. Well, my body.

And so I ride on the see-saw (teeter totter, depending on where you’re from)…it hurts to be touched … but … it breaks my heart that I am not being touched. Frankly, it all comes down to this one question: Am I willing to accept the pain that the contact will cause because the contact itself will provide emotional healing? Which outweighs the other–the Chronic Pain Monster or the sacred human interaction? And it’s not even so much “will I pay the price” but “CAN I pay the price”.

Did I mention anger, depression, denial, bargaining and acceptance? I only go with 4 out of 5 when it comes to skin contact. There is no acceptance of being untouched, of having no tactile connection with my fellow travelers in life. I am stubborn and I am always, ALWAYS going to choose to be touched. I will deal with the devil of chronic pain because I have to–but I sure as hell am not going to let pain take that away. It’s done its damage to my entire life–changed it completely, added limitation upon limitation. But this is one war it will not win. I cannot let it win–because if I do, I lose my own humanity and life is worthless.

Chronic pain can kiss my ass.

Namaste!