Tag Archives: health

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!

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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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!

 

Living in an Azure Haze

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

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

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

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

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

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

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

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

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

 

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.

New Year’s Observations

It’s 2015 and the last year is now just in the history books. It’s the time of year that people make their resolutions and start dieting, running, giving up smoking/drinking/wearing a purple monkey suit to work. Well, I don’t make resolutions, but I think I’d like to make some observations.

We moved from Northern Virginia to Eureka CA one year and two months ago. More than enough time to get settled in, find our land legs (so to speak) and get an idea of what we had gotten ourselves into with that cross-county change of address. There’s only so much you can learn from Internet research and there’s a lot of things that never make it to “meme” level.

The cold hard facts: Eureka is located 5 hours north of San Francisco, 7 hours south of Portland, nestled with its twin city, Arcata, along the shores of Humboldt Bay. With the mountains to the east and the ocean to the left, Eureka enjoys a moderate climate, referred to as “cool-summer Mediterranean”. It has a population of about 30,000 which swells to 45,000 during the business day. It is the only deep water harbor between SF and Coos Bay, WA. And apparently everybody within 3-4 hours comes here for July 4th.

And now, for your reading pleasure, observations I have made in this 14 month period, in no particular order:

In our first week here, we saw a man in a finely tailored green silk suit (steampunk style). He was wearing a matching hat, also made of green silk; a top hat with an exaggerated brim, not unlike the Mad Hatter’s. It was at least 3 feet tall and at least that wide.

The fireworks on July 4th would put any major city to shame: over 20 minutes long, lots of incredible bursts–and all hand fired. I also got to see Captain America doing the walk of shame the morning of July 5th. I’ve seen a man walking his turkey. I’ve seen enough dreadlocks and tie-dye to wonder if this is really 1967. I’ve seen more than one dog sitting quite happily in the trailer on his master’s bike as they roll down the road. I’ve seen our local grocery store clerk, wearing his steampunk top hat to work (regular size), with trimmings to coordinate with the holidays. I’ve seen parts of the kinetic sculpture parade.

I have also seen the ocean as often as we can get out to the beach. Each time is the same–but different. When we got here, there was a little spit at our part of the beach. Nine months and countless tides later, it’s moved about 300 feet north. And at the beach, we see (and watch AND watch for): pelicans, seagulls of all kind; various other unidentified sea birds–and a pair of ravens who have staked out this stretch of sand for their own. We have seen seals, but no whales. Yet. We’ve seen people surfing and people trying to surf. Crazy children in the water (cold water!!), and lots and lots of dogs.

As my Beloved would tell you, on the East Coast, when you go to the beach there is a billboard of “Thou Shalt Nots”–no glass, no animals, no tents, no no no no. And the beaches are still wall to wall of oiled bodies…but here? There are three rules: Beware of the riptide (and you can see the difference in water color where it is); don’t turn your back on the ocean and if you feel an earthquake, think tsunami and go to high ground. Oh, and no parking from 10 pm to 6 am. (To discourage people from sleeping there.)

So on our beach there are dogs, happy happy dogs, running, fetching, splashing, then running up on the blanket to shake off on everyone. I’ve seen dogs from “Are you sure that’s a dog? Looks more like a rat.” up to “Are you sure that’s a dog? Looks more like a horse.” and every size in between. Just so you know: dog poop on the beach dries out (probably makes a great fire starter) and looks like brown rocks. Be careful in your stone collecting.

We’ve seen horses and their riders, trotting happily on the sand–or just like you see it in the movies, in the front edge of the water, running fast enough to make the ocean spray rise up as they move along. And of course the steel horses: ATVs, SUVs and Jeeps all passing by. I’ve watched kites flying in the ever-present wind (really never gets below about 4 mph). Children of all sizes and colors, gender irrelevant in the joy of being at the beach. Playing in the water, running shrieking as the waves come rolling in, making sand castles and digging out moats.

The beach is a happy place for us even though we can’t get very far down the beach. (It’s not the walk *down*, it’s have to come back *up* the hill, exacerbated by the fact that it’s not a nice solid stone hill, but a sand dune. In the “winter”, when it’s too chilly, we sit in the van and watch from that warmth. In the summer, when it’s cool but the sun warms you up…we drag out folding chairs out a few feet from the front of the van, set up and watch. We might bring some donuts (the best I’ve ever had, made by Asians…who knew?), or a sandwich. We’ve been known to bring beer–and so do other people.

And yet…there is no trash, no broken glass. The only detritus is the ashes of a fire pit (yes, you can have FIRE on the beach–and in fact, there’s a guy who drops off old pallets, just stacks them on the beach for anyone to use)–and the aforementioned “brown rocks”. The day after 4th of July, there was a lot of firework waste…and a young man, with his lady friend, were walking along the beach, picking it up. They filled their car with trash and beer cases. They didn’t belong to the city’s sanitation department, they had no connection to the county waste program. Just two citizens, doing their part to keep things clean.

And that’s something I could not find on the Internet. People take personal responsibility for keeping things neat and cleaned up. There are trash cans–and recycling cans–all over town. And people use them! Even the children know which kind of trash goes where. And the citizenry is HOT on recycling. Most of the people I see at the grocery store have brought their own (reusable) bags–and not just because the store gives a nickel’s credit for each bag. The UU fellowship we attend has two buckets to scrape potluck leftovers into–one for compost, the other is meat and other non-compost-able items.

I know what the statistics say about Eureka, unemployment and homeless population. Yes, there is a much more visible homeless population than we had in NoVA. I think because there, the problem is swept out of sight. We don’t want to acknowledge that there are people who don’t have a place to sleep at night…so we turn away and don’t see them. It’s hard to do that here since it is not this city’s goal to hide the problem. Oh, they occasionally get told to “move along”, but by and large, as long as they’re not hassling anyone, fighting or breaking the law (in the same manner that you or I might, NOT “breaking the law” by being poor and homeless), the police leave them alone. They sleep in the cover of the bushes or move up into the hills for warm weather. They have backpacks or shopping bags, or some even have discarded baby strollers. No baby, just their stuff–or, maybe their dog.

A lot of our homeless have a dog. And while the man may look thin and undernourished, the dog never does. The most common breed? The American Staffordshire Terrier (or as we all call them, “pit bulls”). And they are friendly, well behaved and utterly devoted to their human. Remember, this is the breed that used to be known as the “nanny dog” because they look out for their people. I have never seen two dogs get nasty with each other when they’re passing…like the people, they are kind and polite to each other as well as to the humans. (Lots of opportunity for a major dog fight out on the beach quite often. It’s never happened.)

And I’ve seen enough homeless people to know that this is the opening wave of what may very well be a lot more homeless people if the world (and our economy) continues to ignore the fact that if you kill off all the “not rich” people, there is no one to do the work or buy your products. So I’ve seen men and women, adults only–haven’t seen any children who are obviously homeless, but they must exist. I’ve seen young and old, veterans and civilians; black and white and red and yellow; in wheelchairs or scooters. They know when they should congregate out back of the Department of Health and Human Services for the guy who brings a truck with hot coffee (and food).

The homeless in Eureka make “stone soup” every night. Each person brings what they have and they share with each other. There is a food pantry in town where they can get a box of food for the month–something from each of the types of food: protein, vegetables, fruit, grains, dairy. It may not be the best of things, but it’s food. I know, we get our box once a month, too. Never thought I’d be doing that, but when there’s no income for me and we’re living off of Beloved’s SSDI…you take what you can get.

And here’s another funny thing about the homeless people here: they are polite, friendly and do NOT scream profanity at you if you don’t have any money. Oh, and they just ask for “spare change”. If you can’t, then they say, “No worries, thanks man.” And they go on with their day.

It must be something in the water, or perhaps it comes from the ocean air. All of the people here are polite and kind. They are patient, happily waiting until you can clear the register, no one in a hurry and getting irate. If you ask a question and they don’t know the answer, they will find someone who does–or stand there, talking to you, to work it out. The grocery store clerks will very happily pack and then take your bags out to the car–and put them into the car. Without holding their hand out and there’s no sign posted about”No tipping” (like Wegman’s in NoVA).

This extends to their driving. Rush hour here is a joke, compared to the soul-searing hell of rush hour everywhere in NoVA. In Virginia, we measured distance in time: how long will it take you to get there. Problem with that is if you live 20 miles from work and can travel on roads that are 55 mph, you can get there in as little as 30-35 minutes (depending on the lights) BUT it can also take a couple of hours without an apparent reason for that. And you never know, until you’re on the road, which kind of a day it is: half an hour or 2 hours.

Here in Eureka, rush hour means a little slow down, letting more people turn onto and off of the main road and dealing with the lights. When we first got here and were using the GPS to find our way around, we were coming down the road and the GPS bonged. Then the nice lady voice said, “Traffic congestion ahead, 2 miles. Time of delay: 2 minutes.” Beloved almost crashed the car because he was laughing at that so hard. I was too…traffic congestion in VA is like miles and miles of parking lot, with a delay of hours, not minutes. Better have your book and a bottle of water to pass the time.

The 4th of July weekend had about double the normal amount of traffic–and you could tell who was from out of town, because they drove like maniacs. Natives just go with the flow, letting people in and not sweating getting to their destination 5 minutes after they thought they would.


Okay, so I suck at coming back and finishing up a blog article. It’s now the 17th of February. But I am just going to add this to what I had started because it says what I wanted to say then and I wouldn’t change it now. I’ll just write some more about what’s going on now.

I’ve had my follow up appointment with my PCP (finally!). He’s still all hot for me to go see a neurosurgeon because of the issues with my spine–but I’m gonna kind of take it slow and try some other forms of treatment before going under the knife. It’s not just that I’d have to go to San Francisco to have the surgery, but that arrangements would have to be made for my convalescence. I cannot come up the stairs and then lay in the bed for a month or 6 weeks while things heal up. My Beloved cannot take care of me with all the things I’d need.

Part of my delay for getting cut open began today with my in-take evaluation at the physical therapy place here in town. (Called “Vector”, which is how I’ll refer to it from here on.) I’ll be doing water therapy in a pool that is kept at 84 degrees, in a room that is kept at 80 degrees. If I do nothing else, I can at least get gravity off my spine for a while. Pain relief is the main goal for me, so we shall see how it goes. I have already made the request for a TENS unit–a little box of Heaven which I look forward to with great anticipation.  Beloved also goes and so we’ve got a handful of simultaneous appointments “in the pool” for the next month.

I start with 7 visits: 1 in-take eval, 5 therapy sessions (in the pool!) and a 2nd eval to see if the therapy is having any results. It’s stupid because obviously, this therapy should be like my Vicodin: ongoing and maintenance levels. Not “take it for a week and then you shouldn’t need it any more”. But the therapist says that the VA will probably then allow 12 visits, so that’s another couple of months at once or twice a week. One small step at a time.

I have also gotten a change in my anti-depression medication. As you may remember, I have been taking Venlafexine (Efexor) and had come to realize that it’s just not doing as good a job as one could hope for. So we (the psychiatrist and me) are sliding me off the Venlafexine and slowing building me up on Welbutrin. We’ll see if that works. I hope so, otherwise I get to do this process again with another (different) medication. But I am willing to do whatever it takes to stop having suicidal thoughts.

We are eagerly anticipating a 10 day visit from Beloved’s parents. They will be staying in a motel, as we have absolutely no room to put them up in our apartment–and we’ll be introducing them to all the good places we’ve found to eat. I think they are more than ready to get out of NoVA and they want to live close to their children, so this visit is almost a house-hunting, get familiar with the town sort of a trip. His sister is in IL, and she would then just come here for holidays and rest trips, being able to see all of the family in one go instead of having to fly to the East Coast and the West Coast. I hope that Eureka meets their expectations–and then exceeds them, same as it did for us.

Nothing much else going on. Still waiting for the LTD insurance company to decide if they’re going to reinstate my benefits. They want an independent evaluation and that may mean a trip of up to 150 miles (one way) to see a doctor who will accept the job. Fortunately the company is willing to provide transportation and lodging. I need to ask if they will also be willing to give us some $$ for food. But this evaluation means that a decision about yes or no isn’t going to happen within the next month, maybe even two or three. The anxiety about money is a big one and it’s not getting any better until LTD comes through or, miracle of miracles, SSDI gets approved. I’m not holding my breath for either of them because I’d be long dead if I did.

So that’s about it for me now. It’s mostly SSDD, but I do like to check in with you all on a somewhat regular basis. I still have fibro, life is still pretty stressful, but I’m still hanging on and hoping for good things to come along. Peace out!

The Agony and the Ecstasy of Personal Hygiene

To paraphrase Martin Luther King:
“Clean at last, clean at last! Thank gods almighty, clean at last!”

Having only a small supply of energy
I must choose wisely what to do with it.
Do I cook? Do I clean? Do I go out to buy some food?
What are my priorities, for this small supply of “able to do”?

All too often the choice becomes imperative, no choice at all–
Go to the doctor’s, pick up medication, grocery shop.
Some days the energy supply is so limited that just sitting
And typing on the computer uses it all up.

I am dirty; I stink. My hair is grotesque.
I disgust myself because I can’t remember when
I last took a shower. A week? Maybe two?
Too long and I want, but more need, a shower.

(We must insert this small note here to
Remind our gentle reader that a shower is not a big deal.
Unless…you have a chronic illness or chronic pain
Which requires a different set of rules for life.)

Mornings are the time of day for me to do things.
Always has been and more so even now–
Even before medications, before I’ve gone through my day
And used up that little triple A battery I call energy.

Thoughtfulness is a hallmark of my spiritual path,
Which is good because I need it for my physical life.
Awareness of my being, compassionate consideration of my body.
Taking a shower is like planning D-Day.

If cleanliness is next to godliness, then I’m a sinner–
Black as coal and unrepentant, stained with my sins.
But not through intent or any of the seven, deadly sins.
I haven’t had the fun of sinning to gain this status.

An animal that is sick will not take care of itself,
Does not groom its fur nor maintain its den.
Humans are no different because illness drains the energy
And choices must be made or nothing gets done.

I could–and sometimes do–weep for those days when
I long to place my body under the healing waters,
To scrub the dirt and smell of neglect off of me–
But lack the necessary ability to stand and soap and rinse and dry.

It’s not like I’m a coal miner or a pro athlete.
How do I get so dirty? Well, not dirty so much as ….
Stinky? I do nothing that requires enough exertion
To make this nasty miasma of … wait, it’s just “not clean”.

Oh the joy! Oh the rapture of making it into the shower;
To stand beneath the glorious waterfall of heat
And wet that washes away the smell and the sadness
Of not being able to do this unthinkingly.

The comforting thrill of the water pouring over my head,
Over my hair and down over my body.
The only thing better would be if I could
Lay down in a tub, a pool, the ocean…and be covered with water.

Water is my natural element, I have a strong connection
With it, no matter the form it takes.
I am happiest at the beach, with the ever-changing, ever the same waves
And the endless susurration of the water’s song.

A shower has always been a substitute for being in
The salty arms of Mother Ocean, laying on her skirt
And watching the birds overhead while I am rocked,
Like a child, in the loving undulations of water’s movement.

But personal hygiene is not as poetic as an ocean thought.
Millions of people do it, every day, without even a thought
Let alone poetic, philosophical or even spiritual consideration.
My shower is not like theirs at all.

It begins with the decision that today I will take a shower.
I have my own shower’s ritual: place two towels on the
Closed toilet seat; one for the hair, one for the body.
Start the water and give it a chance to heat up.

I set the temperature to comfortable–which my Beloved
Refers to as “lobster” because it’s too hot for him.
I step into the tiny world of our shower stall–31 inches square,
We measured. And I close the curtain behind me.

Inside this small world, apart from the rest of my life,
I worship the warmth and the water, letting it run
Over me, on me, preparing for the next step in
This most sacred rite of becoming godly.

Everything I do is thoughtfully done.
It has to be, because everything I do to get clean–
Has a price I will pay in pain.
This must be done efficiently and carefully.

I shampoo my hair. A simple declaration, yes–but with the complexity
Of a chronic illness behind it, one that doesn’t tell
The cost of that act, the amount of energy required just…
To shampoo my hair.

My hair is very long. Would it be easier for me
If I cut it very short? Could I wash it with less pain?
Of course. But I will not make that choice
Until I can absolutely no longer pay that price.

My actions for washing my hair look the same as yours.
I scrub my scalp, I rub the shampoo through the hair.
I must bend my head far enough down that I do not
Have to lift my hands above my head…

…this is the happy medium in price: both my shoulders
And my neck will hurt afterwards, but neither one as bad
As if I had not bowed my head. Spreading the pain out,
So to speak and lessening the impact on any one site.

I put conditioner in the hair and move on
To scrubbing the body with my puffy scrubber.
To exfoliate and remove the detritus of “too much time between showers”
I scrub hard. And it hurts on all the pressure points, all the trigger spots.

The size of the shower is both a blessing and a curse–
I have no room to bend over to scrub legs and feet.
But I prop myself, ass on one side, foot on the other,
Knees bent and reach all the parts I need to clean.

I rinse, feeling clean again and figure this happy state
Is worth the rest of the day spent doing as little as possible.
I’m clean, cooking doesn’t matter. I’m clean,
Doing dishes and cleaning can wait for another day.

The last part of my shower ritual has always been,
Since I began showering by myself as a child,
To make the water even a bit hotter than “lobster”
And to let it run over my back. I can feel the muscles relax.

I turn off the water and open the curtain, stepping
Back out into the world, a new person–different, sanctified.
I wrap my hair up in a turban and then I
Wrap the big towel around my body; this is my godliness.

Q-tips for the ears, lotion for the face.
I sit for a while in my towels, enjoying the “just washed” feel
And the lack of stinky smell; the baptism in the river Jordan.
I am saved from dirt and neglect; I am clean at last!

I take my medications, I begin my day online.
Eventually, I will find clean clothes to put on and
Place the ones I’ve been wearing for a week
Into the laundry basket to await their own sacred bath.

The pain is there, it always is…my neck, my arms, my hands.
I’m tired enough for a nap, I have no energy to eat BUT
I have showered and scrubbed and washed my soul
And I am clean at last, clean at last!

Thank the gods almighty, clean at last!