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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Time “March”es On

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

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

I haven’t gotten out since.

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

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

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

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

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

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

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

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

Anxiety is not a diet I would recommend.

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

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

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

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

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

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

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

Namaste!

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!

Summer Stream of Consciousness

So here I am, in my usual position of sitting at my desk and being on the computer. I am so grateful to those who created this electronic marvel that lets me interact with others who are, quite literally, all over the world. If I didn’t have a computer, and Facebook, I cannot for the life of me imagine how I would be living.

I have already been careful to add non-computer activities to my life. I am still coloring pages. It’s such a nice, relatively mindless activity–almost like a meditation, with no thought beyond what I am doing at that moment. (Stay in the lines, stay in the lines!!)
IMG_20160713_110848I have FINALLY learned how to make an origami crane (and a 4 point box). I need to go find another pattern to learn. This is also a very focused activity, another type of meditation. Now I have a stack of cranes and boxes…which I am leaving, like a trail behind me, when we go out. I leave a crane on the bill tray or the table. I haven’t been in the grocery store lately, but when I do go, I’m going to put cranes in all sorts of places for people to find.

I’m still working on the loom knitting, doing that when I’m watching a movie. I have some pictures (in my head) that I would like to make happen through Fresh Paint, the newer “Paint” from Windows that lets me do oil painting. I can also do watercolors, colored pencils and crayons/pastels?. But I have always wanted to do oil painting, and this works out very well for me. I can stop at any point, I don’t have tubes of paint and (spill-able) cleaning solutions. Of course, there is the irony of printing it out. Although I have heard that you can actually get canvas that will accept printing. If I paint the next Mona Lisa, I’ll look for it then. In the meantime, I have them on my computer and I share them on FB.

The sister-in-love (and her sweetie) visit went well. They spent a lot of time doing tourist things, so we’d meet up with them for a meal each day. I told my Beloved I was caught between “I thought she said she wanted to see US” and “Thank the gods I have time to rest between visiting without having to say that I have to go rest now.” I’m glad that they were able to see so many things; I am jealous that they got up to Agate Beach. I found about it when I was doing my research prior to our move and I wanted to go there very much. The reality is, I can’t ride my scooter and I can’t walk on an uneven surface. Helll’s bells, I can’t walk on an *even* surface very well.

Speaking of walking, which leads to my general health: my neck shot didn’t work this time. And apparently that means it can never be used again. I had 6 months of freedom from the pain, for the first time in many years. The pain management doctor showed me the X-ray he took and it looks something like this:
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&%^
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Where “&%^” is the lack of discs. It really was just a black blob on the film. No wonder it sounds like a string of firecrackers (quietly, inside my head) when I turn my neck. The doctor is sending me to a neurosurgeon to discuss possibilities for surgical repair. I don’t know how that would work, because the usual procedure for fixing this type of problem in the back is to attach metal rods to the good discs above and below the bad one(s), giving the patient excellent posture. Unfortunately, after about 10 years, according to my sources, that begins to fail. Which makes sense. If your spinal column has problems due to degenerative arthritis, it’s not going to stop just because you put metal rods in. So eventually, the discs that the rods were in also deteriorate…you see where this is going? And doing this in my neck makes me VERY nervous. There’s not a long stretch of back to work with, only the neck. The neck, with essential blood vessels and nerve paths (like, oh I don’t know, the SPINAL CORD??!??). Would it also “freeze” my neck, like the sections of back are locked into place? Would I not be able to turn my head at all? Unless the neurosurgeon can convince me that this is the only way to go and the risks are not as bad as I think…I would rather not have surgery. I am very willing to wear a fitted (specifically to me) cervical collar to help support the floppy neck. (No, it doesn’t really flop. But the muscles of my neck are as tight as a violin string all the time. It tires out the muscles to do the work the support beam structure (spinal column) is supposed to do.) I’ll let you know what happens.

Otherwise physically, we are maintaining the status quo. The cortisone shots in my back, for the sciatica, seem to be efficacious, although the left leg still screams at me down the L3 nerve path if I stand too long. (That nerve path goes from the spine at hip level in the back, around the hip and down the leg, from the outside of the hip to the inner side of the knee.) There is still always pain; there has been for pretty much all of my life, and barring some incredible medical breakthrough, will always be mine. The morphine works. I’m still taking bupropion (Wellbutrin) for depression; hydroxyzine pamoate for anxiety; duloxetine (Cymbalta) for fibromyalgia; trazadone (Tramadol) for sleep; omeprazole (Prevacid?) for reflux; and lamotragine (Lamictol) for mood stabilization. My psychiatrist also added B12 and Vitamin D supplements, which I take daily. The last set of lab work I had came back with nothing bad, which is always what you want to hear. My A1C (blood sugar) is still a bit high, but until I am officially diagnosed as diabetic, I’m not worried about it. Diabetes comes down both sides of my family (to me) and I expect that I will probably get it eventually. I am hoping the eating organic will slow down or prevent that.

I make a conscious effort to either stay off of FB on really bad days (for me), or restrain myself from posting on any political item. You know that I am verbose, and there’s so much I want to say about the election situation…but I find that I am repeating myself and that’s just too much involvement for me. I make a point of looking at all the non-political posts for a break in the anger and fear–not just mine, but those in the articles or other posters. Hooray for kitteh pictures. And for friends who post thoughtful, spiritual things. It’s still a while until the election; I cannot, will not, maintain the negative feelings that the whole thing creates in me.

I cook dinner when I can. My last masterpiece was a pork tenderloin roast, wrapped in bacon and roasted. The trick to putting bacon around pretty much anything is to make a “bacon blanket”, weaving the pieces together and then wrapping the “blanket” around the thing you are improving with bacon. Like this: PiggyinaBlanket

The pork was about 1 pound. It took 5 slices of bacon to cover it. I put spices (thyme, garlic and onion powders, salt and pepper, basil) on the roast and then wrapped it. It cooked at 340 (convection) for about 40 minutes. Because the pork we get is local and we know how it is raised, we can eat it at about medium-medium rare. And it was delicious and oh-so tender. We had it with rice, cooked in chicken stock.

My cooking these days is very different from how I cooked prior to becoming disabled. The hallmark of my recipes is simple preparation and easy cooking methods. I have a basic recipe for meat and rice in sauce, which I modify according to what I’m cooking. For fried rice, I use Chinese spices and ground pork; for meat and rice in a Continental style, like a la francais, I use the spice palette that matches it and cook it pretty much the same way as the fried rice. I can also make meat and curry rice this way. (And the way to do it is to saute onions and or garlic, then add the meat and brown it off, with the associated spices. Then add the ingredients to make your sauce; I generally use half and half or cream. For Chinese, I use a homemade blend of soy sauce, rice wine vinegar, fish sauce, a bit of water, and Chinese spices: garlic, ginger, Szechun peppercorns, coriander, cilantro, and so forth, picking what I want from that group.)

For those of you who love rice and eat it often: get a rice cooker. Spend the money on a really GOOD rice cooker. I don’t generally try to “sell” a product, but I have to tell you: we have a “Zojirushi” rice cooker. (Model NP-NVC10) It will make white rice, brown rice, GABA rice (sprouted brown rice), sushi rice, rice porridge (“congee”) and make any of them in your preferred texture: hard, normal and soft. We use it several times a week. And I will tell you that it *was* expensive. The usual listed price is about $800–but before you faint, I can tell you that I found ours on Amazon for $400-ish. (Free delivery!) It came with a cookbook that I (someday) will use, making rice dishes with some meats or vegetables cooked into them. And before you argue with me that your $30 rice cooker from Target is as good: no, it’s not. I used to have one. It made rice okay, but it was what Alton Brown refers to as a “unitasker”. And believe me when I tell you that for those of us who eat a lot of rice, the cost of having an excellent rice cooker is well worth it. We also only eat “hamali” rice from Thailand. It has a specific logo of a stalk of rice, drooping down with the rice (seeds) hanging off of it. It’s also known as “jasmine” rice because of its rich, slightly sweet smell. As far as Beloved and I are concerned, it’s the only rice because it’s the best!

We now return you to your regularly scheduled program.

Beloved is the Game Master (GM or Dungeon Master, DM, or God of all that happens) for about 8-9 other gamers and they are having a really good time, running through places killing and looting. He has (and continues to) worked hard on preparing for each game night. He is highly organized–and mildly (haha) OCD–so this is a well-run game. The players make a point of telling him how much they enjoy it. And that’s a good thing for him–he needs the positive reinforcement and recognition of his efforts. So he goes to that on Friday evenings and I stay home and listen to the quiet. Or to my music, really loud. Even though we’re not really joined at the elbows all day long–he has his computer stuff in the “office” (second bedroom) and I’m out in the living room–the house “feels” different when I’m home alone. Not better or worse, just different.

Nothing major is going on. We actually have a very clear calendar for this month. I do see my psychiatrist on the 18th, but that’s all we have scheduled other than Beloved’s group therapy and his game. We do have appointments to get our eyes checked–in October. I’m glad to not be going to a doctor’s office every week-whether his or mine. I think it means we’re okay.

That’s pretty much it for me now. Thank you for reading my blog, and I’ll talk to you next time!

Peace out!

 

The Weekend is Here, But How Can We Tell?

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

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

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

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

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

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

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

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

Namaste!

 

The Circle of Life (With a Disability)

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

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

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

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

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

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

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

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

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

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

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

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

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

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

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

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

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

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

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

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

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

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

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

Namaste!

 

Singing about the Home Health Aide

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

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

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

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

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

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

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


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

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

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

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

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

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


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

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

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

Namaste!

Road Trip to Redding: The Return Home

Welcome back, gentle reader.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So peace out, talk to you all soon.

A Family Vacation, Complete With Mooses and Other Excitements

Starting before the vacation: I took Beloved to the hospital on Friday, Feb 28 with a fever of 103 degrees, chills, vomiting and pain. Before he was done, he had been given about 14 litres of fluids (IV), pain meds (IV) and super antibiotics (IV). He figures he got stabbed with needles about 40 times in the 5 1/2 days he was there. If he wasn’t needle-phobic before (and he was), he is absolutely needle-phobic now. Doctor’s diagnoses: strep throat and cellulitis. (Medical note: cellulitis is an infection (“-itis”) in the cellulite layer of the skin. It has nothing to do with weight as both fat and skinny people can get it. It hurts like hell.)

We were concerned that he would not be out of the hospital before Thursday, Mar 5, but he managed to come home on Wednesday. So he got a better night’s sleep in his own bed before we began the Grand Tour of Local Restaurants.

Because of our disabilities, and especially with him just out of the hospital, we can’t really “do” all the tourist-y things when people come to visit. We can’t walk up the Avenue of the Redwoods, go into most of the shops in Old Town Eureka, or any other activity that requires standing/walking for extended periods of time. (And for us, extended is pretty much anything over about 15 minutes. Sigh.) But we bygods make sure that our visitors are well fed, and in a wide variety of cuisines.

So Beloved’s parents (hereafter referred to as “MIL”, Mother-in-love, and “FIL”, Father-in-love) landed in Sacramento on Wednesday the 4th, spent the night there and then drove up to Eureka on the 5th. They got in about 5, giving us just enough time to get them settled in the hotel and then taking them out to the beach for the sunset. (A tradition for us, since the first thing we did once we got settled in the hotel upon *our* arrival was to go the beach for the sunset.) And then we took them to the same place that was our first introduction to Eureka, Annie’s Cambodian Restaurant. Amazing and good, not quite Vietnamese, not Thai, not Laotion, but a sort of blend of all three. Annie’s crab puffs are the best we’ve ever had. Of course we also established the sharing all around of every dish, something done pretty much everywhere we ate in the 9 days they were here.

Because MIL and FIL had a car, they could do some sight-seeing on their own and they did so enthusiastically. They drove north to the Avenue of the Redwoods; walked up the hill and back down again, went on the skyway tram to view the trees from above. They were going to drive on up to Oregon (a short jaunt) but the fog came rolling in so fast and so thick that the decision was made to come back to Eureka. What’s the point of going anywhere when you can’t see anything?

They did a lot of poking around in Eureka on their own. When we joined them (mostly at meal times) we rode with them, rather than taking two vehicles everywhere. So MIL, who does the driving, got a good feel for the traffic and how the streets are laid out. That’s a really good thing because they are considering moving out here, to be near to us and to get out of the hell most people refer to as “Northern Virginia”, or NoVA for short.

EurekaSailorWe got to see the old sailor sculpture in the harbor, something I had only seen pictures of before. He is much bigger than I was imagining and I had Beloved take some photos so that I can attempt to paint or draw him. I’m sure that he’s been recreated in pretty much every medium, but I haven’t done it yet so I’m not worried about other people’s paintings or sketches of him. Driving up to the sailor took us through some protected wildlife lands, actually fenced off with signs about not crossing over the fence. We saw a pair of elk, which my MIL laughingly refers to as “mooses”. So now we’ve got a new word for when we drive out looking for wildlife… we are looking for those mooses!

Like I said, we began with Cambodian food. We also fed them Chinese (two different restaurants, one which does “comfort” Chinese, the sort you’d be used to if you ate Chinese food in the 1970’s; the other is familiar but doesn’t fall under the “comfort” heading. They also do sushi, which we made his parents try…and it was not something they really wanted. That removed the two sushi restaurants off of our list.); we fed them Vietnamese, Thai, Mexican, Greek, German, GREAT steaks, “American Diner”, pizza and one place for organic breakfasts and another for incredible bagels. We also showed them our donut shop which is run by Asians so you can get an order of Chinese food and then get a couple of donuts to go with it. They are, by far, the very best donuts I have had in a very long time. Dunkin’ Donuts got NOTHING on “Happy Donuts”.

We did show them some mundane things, like Costco, Walgreens, RiteAid and our Co-Op grocery store. If they move here, they’ll want to know where things of that nature are located. We also did some looking online at some rentals, to help them understand that with the enormous decrease in the cost of living (by coming to the West Coast, specifically Eureka), they can afford a 3 bedroom house for significantly less than they are paying for a 2 bedroom apartment in NoVA. And by significant, I mean anywhere between 4 and 6 hundred dollars per month less. We were not subtle in our hard sell, trying to encourage them to make the decision to move here, even though our friend had suggested subtlety. We don’t do subtle.

We were glad to see them–it had been almost a 1 1/2 years since we were last together, right before we moved. We had a really good time with them (and we ate really well!) but the physical toll was tremendous for both of us. I figure a healing and restoration time of at least 3-4 days, possibly longer. Fortunately, we have a minimum of appointments this week.

We had actually started our physical therapy (pool therapy), but with Beloved having a bazillion holes in his skin, I cancelled our sessions for last week and this week. We are scheduled to return next Monday, and we’ll see if we can make it. I need to call my psychologist and get an appointment with him, since I had to cancel the last one. Beloved sees his PCP, partly as a follow up to his last appointment with her, but also as a follow up from being in the hospital. He also has group therapy and his gaming group on Friday. So it’s going to be a very quiet week.

MIL and FIL took us shopping on Saturday at Costco and Co-Op to refill our larder and refrigerator. So we’ve got food–and we’re still working on leftovers–but how much cooking either of us is up to…is a good question and I don’t have an answer for that right now.

When they arrived, MIL handed me an Adroid tablet that FIL had gotten as a “retirement gift” and they couldn’t make it do very much. I’ve got it up and running, with various apps that I wanted and I’m pleased with it. Except for one thing: I cannot, CANNOT, make the damned thing acknowledge the 64G SD card I put in it, except as a storage unit for music and photos. And I’ve got enough apps that the internal memory is pretty much full; I’d like to move some of that over to the internal (already there, can’t be changed out) 4G SD card, but it doesn’t seem to want to let me do that. There’s got to be a way, otherwise no one would take the tablet because it wouldn’t/won’t hold all the apps wanted. Oh well, it’s an IT conundrum that I will continue to wrestle with.

I was very glad to have it because it was a calming thing for me to be able to use it, thereby tuning out all the people around me. My pain this week was high enough that even my Vicodin didn’t do much more than tone it down; with high pain comes a vague nausea, so I was eating just a little bit of this and that most of the week. I have had tremors most of the week, but especially during times of higher anxiety. When we went to get steak (at a place that is very carefully designed to look like a dive bar–but it sure isn’t because the bathroom is immaculate!), I actually had to put in my earbuds to block all of the noise. I was on the verge of tears without them. They worked so well, I have gotten a box of actual earplugs, in pink because they’re made for the ladies (we have smaller, more dainty ears!) and they came with a holder, so I can keep a pair in my purse and use them as needed.

Regarding the tremors: I talked to my dad about 2 weeks ago and we got to comparing ailments. He has tremors (bad enough that he can no longer make jewelry) and he suggested that what I have are Essential, or Familial, Tremors–something that is inherited 50% of the time if you have a parent who has them. The doctors don’t know what causes them and there’s no real treatment, although there are some medications for people whose tremors have gotten significant enough that they are embarrassed by the shaking, like when you’re out with people at a restaurant. I know that I have problems holding a fork steady without being stressed… add in the anxiety and I can barely get any food in. Takes two hands–one to hold the fork and the other to hold the food on the fork. I use my natural eating utensils whenever possible–you know, my fingers!

I will be asking about my tremors at my next PCP visit, if only to get the proper diagnosis added to my (ever-growing) list of diagnoses. And speaking of doctor’s visits, my long term disability  (LTD) insurance company (Reliance) has found a doctor who will do an independent evaluation of my condition so that the company can make an assessment about whether I am really disabled or not. And if I am really disabled, according to them (because I am, whether they want to say it or not), they will send a check with a year’s worth of backpay, and then continue with a monthly check. And if I get SSDI, the LTD will pay the difference between SSDI and the insurance benefits, which means about $400 per month more. We sure could use it.

I have two weeks to gather any paperwork (like my health records) and fill out the forms the doctor’s office sent me. I think it’s the new patient forms–and there’s all kinds of mentions of being able to go after the patient for money if the insurance company doesn’t pay for it. HAH! They can try. We already have about a quarter of a million dollars in combined *unpaid* healthcare costs. We’re going for bankruptcy… hate to do it, but we need to “wipe the slate clean” so that we can eventually qualify for a mortgage. I have a pre-approved VA loan, as long as what we want to move into meets their requirements. Needless to say, we need our home to be ADA compliant–and I might start looking around to find out what kinds of grants we can get that would help with the costs, especially since we’re talking about getting a new house. We’ll buy land and then have a manufactured home delivered there. The VA’s requirement for railings on every stairway will not matter, since we’re going for a single floor.

I’m not sure what was harder to deal with this past couple of weeks: the pain or the stabbing awareness that I can no longer do a LOT of things I took for granted as recently as 2 or 3 years ago. Watching my MIL (65 years old) and my FIL (almost 80) walking into the stores, carrying OUR stuff upstairs so that we wouldn’t have to…real slap in the face, let me tell you. Makes it very easy to slip into despair, since I’m already chronically depressed. I really appreciate my meds because without them…and I don’t mean the Vicodin. So recuperation, such as it is, consists of keeping my movements to a minimum to help control the pain as well as doing meditation and some self compassion exercises to help control the negative feelings. (Check this out, from Toni Bernhard: How to Talk to Yourself . Toni suffers from chronic illness, but also uses her Buddhist beliefs to find that Middle Road, even for us, who are having to ride an accessibility scooter on that road.

So that’s where I’m at, just trying to keep on making it through life, one day at a time.
Namaste!