Tag Archives: quality of life

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!

Ongoing Life

It’s becoming harder and harder to see the good things in this world. I know they exist, and are definitely present in my own space. But the rest of the world? Seems to be going to hell in a hand basket. Politics, the economy, Orlando, Jo Cox…so much hate. If I wasn’t already clinically depressed, I would be after reading my FB page and seeing the stuff stream by. Thank the Maker for kitteh pictures!

I’m back on my anti-depressant and feeling better. Hovering around an aqua blue, I think. I continue to heal from my surgery (which could take up to a year or more before everything is back into the “original” place and totally healed). I don’t have a DVT but I do have a varicose vein. It’s not visible through the skin, but it’s a vein that is not working any more. I will have an in-office procedure to “kill” it, which will move the blood flow to veins that have better valves and will push the blood back up into my body, where it belongs.

I went to the neurologist last Monday and got a second shot in my neck. The first one kept me pain free for almost 7 months. I can live with this, for as many years as I can get away with it. I go back to the pain clinic next month to get the two shots, one in each side to deal with sciatica. Hooray for sedation procedures–I sleep through them and wake up to pain relief (within about 3-5 days; it’s not quite instantaneous).

My Beloved did the grocery shopping yesterday and brought me a big surprise–a Dungeness crab, all ready to eat. I tore that sucker up! Just a little pile of shells to put in the trash and I was a very happy, crab-stuffed kitteh! (The crab weighed almost 2 pounds whole. Even if half of it was shell, that would still mean 16 ounces of meat for me.) He also bought me some avocados.

I’m still coloring…branching out into “arty” pictures, like one that I did only in black and grey (and white, where I didn’t color). It keeps me occupied, keeps my mind active (what color next?) and keeps me off the streets. I’ve also continued to watch a lot of Netflix. It may not be much of a life, but it’s my life. And yes, I’m still playing Star Wars and killing things. I did get my hair cut yesterday for the first time in almost 2 years. Woo hoo! My oh so exciting life.

Beloved is a political beast and we have a fair number of discussions on the political uproar of the day. I’ll be so glad, so glad!, when November comes around and we’re done talking about the next President. (Although as he pointed out to me, the day after the election we’ll start talking about who will run in 2020.) The whole situation is pretty scary and the possibility for major chaos is great. Wonder what our nation will look like, this time next year?

The massacre in Orlando has hit me very hard. I identify as bisexual and have always been an advocate and voice for being allowed to love whomever you love, regardless of equipment. But the killings somehow drove it really home that the LGBTQ community IS my community, in a way that I had never known before. The amount of hate swirling around the event is overwhelming. The hate that caused the killing, and the hate of people who say that those killed somehow “deserved” to die. No one ever “deserved” to die. The fact that the club-goers were killed specifically for their sexual identity/orientation is heart-breaking and incomprehensible to me.

I am trying to think of a way, or of ways, to support and show support for all of my community, LGBTQ or otherwise. I try not to label anyone but rather, to accept and love all as my fellow beings on this little blue dot we call home. Life is hard enough without choosing to hate those around you. Hate and love are two sides of the same coin. Strong emotions, feelings that lead to all kinds of behaviors, motivation for our actions. If you truly stop hating, you don’t automatically love the ones you hated. If you loved someone, but have stopped loving them, you don’t hate them as a natural course. The opposite of hate AND love is apathy. You just don’t care what happens to them, what they do, and their life doesn’t impact yours at all.

I think hate requires far too much energy to keep it going–because it is not the normal, “default” setting of our emotions. I believe (and hope) that love is the more natural, the more primal and primary, setting. Love is a verb, an action, a feeling in motion. I love every single being on this planet. Now, before you think I’ve gone off the deep end, let me qualify that sentence. I love all–but I acknowledge that not every being is lovable, not every being behaves in a loving way. I can love the shooter in Orlando as a fellow being, feel sorrow at his obvious pain and anger. I also condemn, without hesitation, the actions he took.

It’s as I told my children when they were little: I love you. But I don’t love your actions/words (when they were being chastised). I separate the “who” of who someone is from the “what they do” actions. Maybe it’s all just a mind game, a fatuous way of trying to be noble or something… but it works for me. I start, try to start, from a default position of love whenever I am interacting with others. However, I do not have to accept cruel words or hurtful actions from anyone. It’s not that I can make them stop…just that I choose not to let it affect my life. (It will and does sometimes, but life is an ever-moving river and sometimes, you fall in. It’s the getting back out that matters.)

Solstice is coming next week and we’ll have the longest day…which will then immediately being shortening back into winter hours. Beloved’s sister, and her beloved, are coming to visit in a few weeks, which will be fun. Lots of eating out and going to the beach! And so my life goes on, in its mostly gentle pace…
Namaste!

Compassion for Others Begins With Compassion for Yourself

“Compassion is the keen awareness of the interdependence of all things.” ~~Thomas Merton

“Compassion is the greatest form of love humans have to offer.” ~~Rachel Joy Scott

“Until he extends the circle of his compassion to all living things, man will not himself find peace.” ~~Albert Schweitzer

“I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.” ~~Lao Tzu

“Be kind, for everyone you meet is fighting a hard battle.” ~~Brian Tracy

“It’s not what you say out of your mouth that determines your life, it’s what you whisper to yourself that has the most power.” ~~Robert Kiyosaki

I have tried, my entire life, to be compassionate to others; to offer a listening ear, a hug, or whatever else seems the appropriate response for their suffering and need. I would like to think that I have achieved this…but lately, I have realized that I never offer myself that same compassion. In my head, I speak to myself in ways that I would never dream of using to another person. I am my own worst critic: cold, judgmental, harsh, unfeeling and uncaring. Since I have become disabled, it seems to have gotten worst as I blame myself for not being able to do the things I always have, even though my debilitating pain is a valid reason for the inability to do them. I just don’t cut myself any slack.

I believe I have mentioned Toni Bernhard to you before. She is the author of three books aimed specifically for those of us who are chronically ill, who have the most valid reasons for not living “normally” because of our health. She consistently mentions self-compassion, being kind to yourself and forgiving yourself for not being able-bodied or doing the things “that need to be done”. She planted the seeds of learning how to be loving and compassionate in my head–but more importantly, in my heart. I follow the Tibetan Zen Buddhist path, with all of the selflessness that entails. It’s very easy for me to be kind to others, to do what I can to alleviate their pains. However, it had not occurred to me to turn this way of living inwards, to my own soul.

And so I have begun to incorporate this into my daily life, as best as any imperfect being can. I don’t always succeed, but that’s part of the joy of both self-compassion and the practice of mindfulness: you acknowledge the lack, then let it go and start again. I am learning to have the patience for myself that I have never had before, to acknowledge my limitations without judging and without blame. My limitations just “are”; they exist without any connection to something I did or didn’t do.

In making this a part of my daily routine, I have discovered that I am also losing the rather judgmental way I had been perceiving the strangers on the street. Specific example: I am embarrassed, even humiliated, that I do not shower as regularly as I used to (every other day),  nor do I shower as often as I need to. For someone who sits quietly most of the time, I sure can get stinky–and my hair gets greasy. Being showered and well groomed has always been important to me but I no longer have the ability to do it on anything approaching a regular basis. I simply lack the stamina and flexibility it takes to wash my hair or to bend and twist to wash my body. Some days, a shower is my greatest–and only–accomplishment. I think I had accepted this as just part of my life as a chronically ill person, but I was not self-compassionate about it.

Now when I see people on the street and they are less than my idea of groomed, I know from  my own experience that it’s not from a lack of caring about how they look but rather from not having the ability to do so. Eureka has a fairly large homeless population…so there’s a whole segment of our society that doesn’t have consistent access to a shower. I know that this does not mean they are somehow less of a person than someone who can. I just didn’t apply that mindset to myself.

It’s not just about showers. It’s about anything for which I can condemn myself. I have always said that I have a great deal of patience for everyone else, but never for me. With the onset of chronic illness, with symptoms that prevent me from holding a job, I am being forced to learn this patience for me and my (perceived) short comings. Our society makes a lot of perceptions about its members, some of them valid but I think mostly mistaken. Perceptions are judgments–and who am I to make judgments about others when I have enough issues of my own?

I am wrestling with more than not having a paycheck job. My mother raised me to be a Southern housewife, to take care of my husband, keeping house and cooking meals. Add to that cooking the fact that before I became this ill, I was working towards having my own business as a personal chef. I feel disappointment in myself because I cannot clean the house as I want to. I am particularly unhappy at my inability to make basic meals, never mind the “gourmet” dishes that I so enjoyed creating.

These feelings, while valid (because all feelings are), are neither useful nor self-compassionate. I acknowledge the concepts of using our minds to (help) heal ourselves but what I have cannot be “thought” away. I  have structural damage in my spine which cannot be easily remedied. Any sort of treatment that would work, could work only for a while; there’s a reason it’s called “degenerative” arthritis. I do believe that with mindfulness–but especially with compassion for my own being, I can reduce or relieve a great deal of my pain and various lesser ailments.

For example, I must acknowledge the limitations my body has now, not what it used to be able to do. If I refuse to accept the true state of my body, I may be able to “push through” and do the thing(s) I want to–but I will pay for it in greater pain and even less ability for a period of time exponentially larger than the amount of time those actions took. Simple facts are simple facts, and the truth is very simple: I am very limited as to what I can do now versus what I did *then*.

Another aspect for self-compassion that I need is to stop the self-deprecation. I forget something–a word that means just what I am trying to convey or a task that needs doing. Then I chastise myself for being “stupid”…when it just a state of being. I understand that being in pain means less attention to focus on anything other than that pain–but I am still working on allowing myself the compassion to not fret about it and certainly not to punish myself. I am attempting to retrain my mind such that I accept my state of being, at whatever point I may be, on any given day, just as a state of being, with no particular emotions tied to it–and certainly not negative emotions.

The only time we can be sure of is this moment…and this moment…and this moment, for all of the moments of our lives. Trying to live at any other time, past or future, means that we aren’t living NOW. NOW is all we truly can have, can experience in “real” time. To live in the now is very difficult sometimes, maybe more so for some people. All of us have connections to the past and hopes for the future but if we let those connections and hopes replace the moment, we are not living our lives to the fullest, nor being the person that has this moment. “Be here, right here, right now. Everything else is just a dream.”

What is so important about self-compassion? As with real and abiding love, we cannot be truly compassionate (or love) anyone else until we know that feeling for ourselves, within our minds and hearts. It needs to be a natural and inevitable part of each moment, something that we don’t need to think about, or have to do any specific ritual to bring about this behavior.  We “fake it until (we) make it”–and it only takes 21 days to establish a new habit. At first, it may seem contrived and even foolish to speak to ourselves with compassion. But if you will persevere and continue the practice of being kind to yourself, I believe you will find yourself both feeling happier as well as being a better person for that practice.

“If you believe it, you will act on it. If you continue to believe it, you will act on it again and again.” ~~Hugh Prather

Our minds create our reality–what we think the world is, it is to us. So if part of our world view includes negative ideas about who we are or what we are, we will continue to behave in ways that will support, even validate that view. We create a mindset that establishes a certain point of view and we can become locked into the view, no matter if it is actually true or not. A quote from Doug Adams says it all: “He was amazed at how different the world looked from a point three feet to the left.” That world view includes our own being; sometimes we need to step “three feet to the left” to get a new angle, a fresh perspective on what we thought we knew–even about ourselves.

If we are seeking to make our lives more fulfilled, if we want to create peace in our lives and to maintain the practice of loving-kindness and truly living in this moment, we must start from the point within ourselves that is the core of our being, the “who” of who we are. It is one thing to require real changes to ourselves because we are making poor choices in how we live–and quite another to berate ourselves for things beyond our control. Would you blame a person for being blind? Would you belittle someone for being elderly? Of course not. Then why would you–or do you–blame and belittle yourself for circumstances beyond your control?

And life is always about choices–and the magic of choices is that you can always choose a new way to go or do something. You are not bound to the past unless you CHOOSE to be; you are not endlessly longing for the future unless you CHOOSE to be such. Self-compassion is for those times when you are in pain (mental, physical, spiritually) and you want to lessen or alleviate that pain by understanding that all beings suffer and so the choice is the manner in which you deal with the problem.

Through compassion for our own state of being, we acknowledge our connection to the rest of the world, to everyone else around us. And we then understand that we are no more and no less than any other being–and compassion is the natural response for the human condition, even unto ourselves. The act of self-compassion opens us to a deeper relationship with those we meet. It encourages diversity and tolerance, mutual respect and a sincere honoring of the sacred being within each of us. And it begins with acknowledging our own sacred being, warts and all.

I close with this link: Self-Compassion from Toni Bernhard, in which she shares some thoughtful and inspiring quotes about self-compassion.

Namaste!

The Circle of Life (With a Disability)

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

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

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

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

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

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

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

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

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

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

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

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

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

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

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

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

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

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

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

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

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

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

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

Namaste!

 

Singing about the Home Health Aide

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

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

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

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

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

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

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


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

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

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

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

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

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


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

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

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

Namaste!

Road Trip to Redding

I’m going to start with this link, please take the time to click it and read the article–it’s not long!
Start Where You Are

This was the comment I posted for that article:
“Thank you, thank you, thank you! You have my deepest gratitude for your words today. I need(ed) them so badly!
Obviously, I am a sufferer of chronic pain–and the limitations my various diagnoses have forced on me. I have also had my stress-anxiety disorder tested to its limits as I am *still* fighting for SSDI (4 years and counting; could be another 4-6 years) AND I am dealing with a Long Term Disability insurance company that has stopped benefits several times because they think I can and should go back to work.
So this article hit me hard…because I am preparing to be transported from Eureka to Redding (a 3 hour tour of the winding-est roads and mountain terrains I’ve seen since we drove up from Sacramento 17 months ago). The LTD insurance company wants an independent medical evaluation before making what will be an absolutely final decision about my case. Part of the reason they don’t want to pay (aside from the obvious of trying not to pay ANYONE) is that if they make the decision in my favor, it means they are then obliged to pay me until 2028, when I turn 67 and go onto Social Security (“retirement” rather than SSDI disability). If I do receive SSDI, the insurance company will pay the difference between SSDI and my LTD benefits–a not insignificant sum and one that would be totally wonderful to have as part of our limited and very set income. SSDI does not give much of a raise each year and there’s no bonuses or overtime available. Sigh.
As it is probably obvious, I am in “a state”, making sure that I have the medical documentation I have been asked to bring to the office–it’s only about 2 inches tall, not a very big pile of medical histories at all… I have the added stress of preparing for a night away from home, because I cannot sit for 3+ hours, see the doctor (scheduled time is 1 1/2 hours, plus any waiting I have to do) and then have to make the 3+ hours ride home. The insurance company is providing transportation and lodging (at the local casino! haha … because it’s cheaper than the Holiday Inn next to the doctor’s office) for me–and my 6 foot tall teddy bear, aka my husband. That’s really great and the casino hotel looks awesome–it’s very new, just about 1 year old. BUT. It means I have to pack a bag, even though it’s a small one–preparing adequate medications in travel containers, carrying our CPAP machines and the distilled water for them, and entertainment for the hours between the doctor’s visit (let’s say 5 pm) and being picked up to go home, 11 am Wednesday morning. My mobility scooter is going with us, so I have to remember the charging cord for it…
In other words, I am feeling rather overwhelmed and VERY anxious, stressed out about tomorrow.
We have errands today to finish up some preparations–we both need more nose spray (or we can’t breathe), he’s got meds to pick up, and we have to check our mailbox in the local UPS store to get meds for me, and hopefully, the San Francisco VA Medical Center has sent me the hard copy of ALL of my VA records, along with a CD of the imaging that’s been done–which is totally necessary, as it shows the degenerative arthritis in my spine and the bulging or missing discs in various sections of same.
It’s sort of ironic that the medical thing that will probably get me declared “truly” disabled is the sad condition of my spine, and not the fibromyalgia that covers every other symptom. But I’ll take what I can get.
Reading your article as I said truly gobsmacked me–and I truly needed that. “Start where you are” is great for the daily life (and as a Buddhist myself, I try really hard to find that kind of living in the moment mindset) but I especially needed to hear that today, for today and for tomorrow. I think that once I’m finished at the doctor’s I will calm down a great deal, because my part will be done, there’s nothing more I can do to affect the company’s decision–and with this, they have a very limited time to give me the answer, so the endless waiting and hoping will no longer be endless. Regardless of the decision, the “not knowing” will be over and that in itself is a great removal of anxiety and stress.
I am grateful to belong to this community–it sucks that we all suffer something beyond “normal” life, but at least we have each other! And I appreciate your letting me post this wall of text to say sort of out loud what’s going on in my head–which helps me deal with it. Knowing that I’ve now got a lot of sympathetic and kind thoughts for me happening in the cosmos of chronic illness sufferers…means more than I can say. Thank you, all of you–and especially Toni for giving me the reminder that I can face anything, particularly stressful or anxiety-producing, with the mindset of “Start where you are” and then “find workarounds”. (PS–Like Toni, I am right-handed. I am becoming more and more ambidextrous as I have to use that left hand/arm more often. It’s not a bad trade-off.)
Blessings, peace and joy to you all. All we truly have and can live in is this moment, right here–moment by moment.
Namaste!”

Saves me from having to retype everything and lets you get informed about the way too exciting events I’m dealing with this week. I’ll update this when I can after I see the doctor. In the meantime, cross your fingers and help me hope for, wish for, a positive decision that will immediately decrease not only my gargantuan stress/anxiety level, but also Beloved’s. It means living within OUR means and not within the generosity (very much appreciated but also a bit… dependent as a child and no longer an adult…) of his parents. It means the difference between being able to get the bare necessities and being able to afford some of our “wants” without having to choose between them and eating. And we would get that anxiety not only alleviated, but smashed because the insurance company owes me 13 months of pay if they approve it–and then the monthly checks begin. I try not to think about that chunk o’ money because we might not get it…and I don’t want my hopes up that high!

So that’s where I am, we are. I can use all the good juju, prayers, good thoughts, positive energy, candles lit, whatever it takes to make the situation have a good and successful end. Thank you and watch for the updates, which will, all the gods willing, be happy ones!

Peace out!

(Part Two)

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!