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!

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Getting Poked and Mauled

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste and Peace!

Summer Stream of Consciousness

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

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

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

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

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

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

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

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

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

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

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

We now return you to your regularly scheduled program.

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

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

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

Peace out!

 

Living in an Azure Haze

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

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

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

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

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

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

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

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

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

 

Summertime in Eureka

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

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

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

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

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

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

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

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

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

Namaste!

 

The Circle of Life (With a Disability)

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

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

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

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

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

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

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

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

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

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

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

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

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

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

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

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

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

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

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

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

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

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

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

Namaste!

 

Road Trip to Redding: The Return Home

Welcome back, gentle reader.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So peace out, talk to you all soon.

A Family Vacation, Complete With Mooses and Other Excitements

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chronic pain can kiss my ass.

Namaste!