Tag Archives: anxiety

Time “March”es On

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

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

I haven’t gotten out since.

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

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

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

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

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

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

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

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

Anxiety is not a diet I would recommend.

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

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

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

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

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

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

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

Namaste!

The World Didn’t End (But it May Yet)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Current Events and Forthcoming Appointments

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

The Circle of Life (With a Disability)

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

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

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

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

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

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

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

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

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

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

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

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

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

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

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

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

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

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

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

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

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

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

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

Namaste!

 

Karma Is Not Always Bad

Karma Sonnet

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

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

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

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

~~KGC

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

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

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

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

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

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

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

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

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

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

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

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

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

Karma Haiku

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

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

Peace and blessings to you all, Namaste!

Singing about the Home Health Aide

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

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

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

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

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

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

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


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

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

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

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

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

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


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

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

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

Namaste!