The Lusty Month of May…or is it?

It’s May, the rhododendron are blooming, along with every other flower that thinks it’s time to appear–iris, azalea, tulip trees, cherry trees, and so on. We somehow have bypassed spring and gone pretty much straight into fall-summer. It’s been rainy rainy rainy…and hovers around 50-55-ish when it does. But we’ve also had sunny days at 75. Oh well, it could be worse, it could be snowing.

We are still gaming two nights a week, He and I. Except that his Star Wars game got blown up by one of the players who was much more interested in breaking the game than in role-playing. The stress and unhappiness all around was sufficient that Beloved just said, “I’m done.”. Now we play another man’s game…ha-ha! Our friend is now running a D&D version 5 game. I am a male dwarf named “Thorin (nickname “Thor”) Warhammer; Beloved is a human female named Mara. We have a kobold (think lizard person) rogue and an elf (? I think) fighter. We are currently guarding a wagon caravan across country and recently killed a young black dragon. Incidentally, my weapon, a warhammer, is named “Meow-meow”. <snicker>

Our Friday night game continues, with some new people. We had a Paladin for a couple of sessions, but the player has moved back to the Bay area; if he returns to Eureka, so will the paladin to our table. We’ve also had an (old/former) player move back to town and pick up where he had left off. We’re all 16th level now, which is getting towards god-like. My arcane wizard has a handful of amazing spells and can do all sorts of fun stuff that she’s picked up as we leveled. Of course, everyone else has also added abilities, so we are, as the saying goes, fairly bad ass.

In real life, it’s been almost as exciting. I went to the ER on Saturday the 5th of this month after having every “serious, call your doctor” reaction to the new shingles shot that I had gotten on Friday. TL:DR is that I am filing a grievance complaint against the doctor who (was supposed to) took care of me. Rude, dismissive, arrogant…and those are their good qualities. I ended up spending the weekend in bed–thank the gods for hospital beds; it’s like sitting in a gloriously royal recliner. I have my water bottle and spectacles and various technology within arm’s reach. I spent a lot of time playing the “Lost Lands” hidden picture games.

PSA: if you have a Kindle with Internet connection (like my Fire), you are part of the “Amazon Underground” and can get a bunch of games for free–and not just the games but the FULL version of the games without buying it and not having to shell out money for in-game purchases. So instead of getting just enough of the game to get interesting and then having to buy it, you can play the ENTIRE game! Artifex Mundi makes some pretty good Hidden Picture games, and I am working my way through the 5-6 “Lost Lands”, which is by another company that I can’t remember the name right now. You can keyword search by “lost lands”. This is will hold true for other genres of games as well.

Of course the shot reaction also caused a fibro flare, so…most of last week was lost to trying to stay pain-free as much as possible. Which meant that I did not monitor Beloved’s health as closely as I should have. He ended up in the ER on Tuesday night with fever, chills, killing headache, body aches…full onset infection. Three litres of saline, IV pain meds and major IV antibiotic–and 6 hours in the treatment room later, he was sent home with new scripts which were filled Wednesday morning. He’s feeling WAY better now, but will continue to take it easy until next week, having already canceled Friday night’s game. He eats when he’s hungry, sleeps when he’s tired. And while this is not much different from any other normal day, the sleeping portion is a bit greater as his body heals. (You only heal when you’re asleep. Now you know.)

That’s been our excitement recently. Generally, life is pretty smooth. I did get a call last week from my lawyer’s office. I’m getting a new lawyer because KC has been called to that Big Courtroom in the Sky. Yes, my lawyer died. I’m starting to feel a little worried; my first lawyer (divorce) was disbarred. Now my Social Security Disability lawyer has died. I hope it’s not something about me, haha. I’m also STILL working on getting that venous ablation; dropped paperwork has stopped the process and there it sat until I FINALLY ran down where it had dropped. Hopefully, sometime before my surgeon dies (remember, he was told he was going to die this time last year? Still kicking, last I heard.), I will get that done. Can’t have both legs done at once because of the limit for how much anesthetic they can use in one day (even though it’s a topical, not vascular version). So one at a time it shall be.

I’m also going for an MRI on the thoracic portion of my spine. There’s new pain, down deep and an x-ray didn’t show anything to worry about. But we didn’t see the stalactites and stalagmites in my neck until that MRI…

Current medication now includes an increase in the dosage of my Vicodin, since a 5mg tablet lasts about 4-5 hours. Taking 10 mgs at the same time of day means 2-3 hours more of pain relief, so that’s a help. The MMJ is still a miracle, still making a HUGE difference for me. I’m still getting a good night sleep most nights, instead of rarely and I’m still only taking 3 prescribed medications (Vicodin, Omeprazole (Prilosec) and Duloxetine (Cymbalta)).

AND JOY OF JOYS!! I have had my evaluation and I get to go back into the pool next Monday!!! Just getting that bitch Gravity off my back–literally–helps. And if I can do some moving around (walking, arm exercises, etc), maybe I can get the body into a slightly better shape which can only help. I will swim the hour after Beloved has his pool therapy. While we will each have to wait an hour for the other, it means a single trip out of the house, twice a week on Mondays and Wednesdays.

And now for something completely different. I have gotten an Instant Pot, and yes, it’s every wonderful thing you’ve ever heard about it. I can make spaghetti from start to finish in about 20 minutes. (And by finish, I mean dish it out of the pot and eat it. I don’t even have to drain the noodles!) I can make pulled pork in less than an hour. I can make steamed sweet potatoes in about 30 minutes. I bought the 3 quart version, which lets me make small amounts. *Someone* thinks we should get the 6 quart (more of the standard family size) since most of the recipes online are for that size–but we’d have more leftovers than we’d know what to do with and my freezer is only so big. (And often full of Ben&Jerry’s ice cream, but remember, we’ve got our priorities!)

Did I tell you that I FINALLY got the ramp for my wheelchair so that I don’t have to bounce in and out of the house over the threshold? I did, and it’s wonderful. It also helps Beloved pull in the cart we use to bring groceries in. Most ingenious engineering: three pieces of hard rubber that lock together to form the ramp. Since we’re not going to bolt them into the concrete, we just keep an eye on the joints and kick them back together if they look like they want to come loose.

I’m doing a lot of reading these days–mostly books that are in the public domain, which means OLD books. Still doing jigsaw puzzles, 630 pieces at a time. I can do one in about a day, if I spend big chunks of the day doing it. That’s not something new for me; I used to do 500 piece puzzles the old fashioned way, by hand on a table…and could do them in about that same amount of time. Frankly, doing it on the computer is MUCH neater and doesn’t take up the table that we would be eating on. Still watching movies and shows on Netflix…Monty Python’s Flying Circus (the series) is on and I can watch 3 or 4 of the episodes before needing to find something else to do.

So we are owned by a cat. No, I don’t “have” a cat, we aren’t allowed pets. But a neighborhood cat has decided that we are a part of her world. This is the cat that I rescued off the fence early last year.

A year older and a little bit wiser, she came to the back door one of the warm days, when we had the glass door open. She mewed at the screen and we let her in. She RAN to Beloved and began rubbing and loving on him, putting her paws up on his knee and giving him love bites. The bitch! That’s MY Puppy! He has never had a cat do that to him, so he was astonished at how much she was loving on him–and ignoring me, the cat lover. Oh, she lets me pet her and she will come over to me–but it’s obvious that she really LOVES him. She’s a talker and a purr-er. She likes to roll on our kitchen carpet and on the new threshold carpet which has a lot of texture (gotten to help clean off the wheelchair tires so I can stop tracking mud in when I come home.). We shut the bedrooms and bathroom doors, to keep her in the main living area. (I’m not going to try to have to get her out from under his bed. Not happening.) I’ll give her a bowl of water, but we are NOT feeding her. She can come to us for love but not sustenance! She also discovered the lamb skin rug I have–I’ve mentioned it before. And now she and I are going to rumble to see who owns it. She rolls and rolls on it, tries nibbling on the fur although I fuss at her about that. Oh the cuteness when she does it! And when she’s ready, she just walks out the door and back to wherever she lives. It’s nice to have the chance to pet and love on da kitty; it’s good for our health.

There’s another cat, this one more feral and male, who also wants to rub on the door because She has…but he will not come into the house. He did let me pet him, but he feels thinner than she does. With the fear and the thinness, I suspect he’s not anyone’s pet, but she’s in too good a shape (and with sufficient weight) to be on her own. She’s also way too friendly. Especially with SOME men. Actually, I would be willing to bet that it’s the man of the house who is her favorite at home. The lady of the house may feed and water her, probably pets her…but she loves the man. That seems to be where she expects the best reception to her presence.

One of those summer-like days, about 2 weeks ago, we had some time between things to do and went out to the beach. I even got out and put my feet in the sand for the first time in a long time. We also watched humpback whales migrating up our shore, just beyond the waves–which means fairly close in to shore. Must have been a pod of them; we’d see the pfffffttt of spray and then watch the dark body slide back down into the water. I think we saw between 6-8 of them. Very exciting for us! (Very “just a day’s work” for the whales. Which only goes to show that one creature’s routine is amazing to other creatures. Even among humans!)

We have managed to catch a break on medical costs. Long long story shorter, Beloved presented paperwork to the Department of Health and Human Services (HHS) for the county that indicated while disabled, he is still trying to work. His parents pay him $40/month to provide tech support. Well under the limits, but larger than the qualifying amount of just $1 per month. So instead of the “spin down”, or “share of cost” for MediCal (Medicaid), he now pays a premium for a “zero share of cost” card and the state picks up his Medicare Part B payment. He has no co-pays on his meds, which saves us about $50 per month and if he needs care beyond his own doctor that Medicare won’t cover, MediCal will. It’s a good thing for us and we’re happy to have gotten it. Every little bit helps!

Most of our time is spent at home, being at the computer or ingesting media (movies or books) or playing games. We are trying to eat at home more often simply because it’s expensive to eat out. It has meant getting the Instant Pot and also buying things that are easy to fix for those days when I am not up to standing and cooking the usual gourmet meal. Beloved found some decent frozen hamburger patties in the Costco freezer and we have been having them at least twice a week. He also gets premade raviolis that just take 3 minutes in boiling water to be ready. (We’ve had them with sausage and we’ve had them with lobster. Om nom nom.) Sausages are another staple–and we have organic instant potatoes, also from Costco with those, so “bangers and mash” is on our menu regularly. Easy to make: water, little butter, little milk and the pouch. One pouch ostensibly makes 8 servings. I guess if you’re midgets or hate mashed potatoes. He and I can pretty well finish off just one in a meal–or maybe have some leftovers for lunch the next day. Make at least two if you’re having company. They reheat very easily in the microwave. They are very worth buying–and easy to turn into cheesey bacon mashed potatoes with the addition of cheese and bacon. Or any other mashed potato recipe you have. They have a really good taste them–a lot like the Idaho potato flakes, except that they are organic.
Here’s what they look like:

 

I have rearranged the living room furniture with an eye towards being able to be in bed and still able to speak to guests. That puts my bed on the back wall, next to the patio door, and looking towards the kitchen. His comfy chair is at the foot of my bed, with his desk (on wheels) in front of him. Across the room is my desk, the cabinet I keep my stuff in, my (old desk but now company) chair and the table with the printer on it along that wall. It has opened up the room and we can actually have people over without sitting in each other’s laps. His desk is large enough that if we cleared it off, we could play table games on it–and perhaps someday soon, we shall. I still need to get into the spare bedroom and doing the various things in there I want to–finish sorting out clothes and boxes of shtuff, trying to get rid of things that I don’t wear, use or want. No point in having them if all I’m doing is storing them. That will mean some boxes to my kids, as there are things I have that I either want them to have, or they would want it if they knew I had it. I also have some things for the grands, pending parental approval. Fortunately, none of that is pressing for getting done.

Speaking of the grands, my daughter’s two girls have their birthdays at Memorial day. Hard to think that the Evil Genius is going to be 8 already; Little Sister is just 3 years younger. Time flies. Oh how it flies! Froggy will be 7 in October and his little sister will is 3, with her birthday also in this month. How can this be, when I am still only 29? HAHAHAHA. Seriously, I’ll be 57 and I’m totally okay with that–as it’s better than the alternative. Besides, I always thought I’d die before I turned 21, so any amount of time beyond that is extra, as far as I’m concerned. Death doesn’t scare me. I’ve seen things worse than death, and frankly, with my levels of pain…death has often seemed to be a release. “Suicidal ideation” is just a part of my life. As long as I’ve got my love to keep me warm and tell me silly jokes, I’ll hang around. If only to see how this all turns out. But when it’s time to go, I’ll go without a fuss. No matter what, if anything, is beyond. Living right now, doing the best I can right now, that’s all I can be sure of. That’s all I can be concerned about and with.

We’re still loving Eureka, still glad we moved here, still miss everyone we left back in VA and still wondering when you all are moving out here to be with us!

Off to do other things, back to you all sometime. Maybe months, maybe not. Hang in there and eat dessert first, life is uncertain!

Namaste, peace and love 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!

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.
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!

 

Karma Is Not Always Bad

Karma Sonnet

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

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

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

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

~~KGC

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

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

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

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

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

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

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

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

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

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

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

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

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

Karma Haiku

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

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

Peace and blessings to you all, Namaste!

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.

We 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!

 

New Year’s Observations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The 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!

Summer Vacation (In Place)

Back story: Beloved’s sister, my sister-in-love, hereafter referred to as “SIL” is a costume designer. An amazing, creative costume designer. Who is 2/3 of the way through grad school in IL to gain the paper proof of her abilities known as The Master’s Degree. She’s not only been burning the candle at both ends, but in the middle and anywhere else the wick dared to peek out. So Beloved and his parents managed to convince her to come visit us as a well-earned and much-needed break from the grueling millstone of school and shows and summer jobs. And after talking to her, Beloved got the vacation extended from 4-5 days to 9 full days in beautiful, calm Eureka.

And the curtain on our Summer Vacation goes up:

We picked her up at the local airport (a single baggage claim area, one gate, and everything but the Pepsi machine closes at 8 pm) on July the 2nd. She looked tired and from more than a full day’s travel (a 7 hour layover in Sacramento to catch the puddle jumper up to here). But she was happy to see us and we were happy to see her. We grabbed a bite to eat at the almost only place open 24 hours, the local family diner, then took her to her home away from home motel room. (Trust me, there’s no room in my house for her, and besides, she has some modicum of privacy, of which there ain’t none at all in my house!)

Next morning (or later that same day, depending on how you look at it), we gather her up and the meals begin…during these 9 days that we had with her, we took her to all of our favorite places to eat, carefully planned so as to maximize the number of restaurants we could fit in with us only eating 2 meals a day. We hit Walgreen’s and Target for some of the little things she forgot, to replace an extension cord that the TSA absconded with on her flight out here, and beach paraphernalia such as a chair, bucket (for seashells) and a hat. We hit Old Town one day, having lunch at the Cafe Nooner and then she and I walked around the shops. Well, she walked, I rode my new(ish) scooter; Beloved went back to her motel and hung out until called to fetch us for dinner at the next restaurant on our list. We repeat that process a day or two later to hit the local thrift stores–which she may have actually enjoyed more. SIL has been thrifting most of her clothes for a long time. She found some great stuff–and I didn’t do too badly myself!

We had Chinese food, Vietnamese, Thai and German. We had Mexican food and California sushi, as well as Japanese (traditional) sushi. All of it fresh, most of it local, some of it organic. A better quality of food than most people eat and a sure fire way to help her restock her body’s energy. Lots of sleep and days of doing nothing in particular, just what the Doctors Brother and His Wife had ordered. I have to admit, living right by the ocean, the only kind of food we didn’t feed her was seafood (other than in the sushi and that’s not everyone’s idea of seafood, even if it is fish!)–Dungeness crab season ended as she arrived, so we’ve put that on the “To Eat” list for the next time she’s here.

We showed her Eureka, our Costco which has a lot of organics (probably due to local demand for it), our house and the little town we live in (south of Eureka). We went to the fireworks show on the 4th–first one I’ve been to in years. For a small town, it was downright impressive–about 20 minutes long, with fireworks I’d never seen before. We sat at one of the Boardwalk down on the channel where the boats go through to the ocean–and the marina resides. Lots of people, but all of them happy and pleasant. We even had a puppy cuteness overload with the people next to us having 3 puppies, maybe 2 months old…awwww.

We took her to the beach. Four or five times in the time she was here. The first time, we hit the jackpot with the wild life. She was happy to see all of the dogs, which we also enjoy. (Or as Beloved points out, there are only 3 rules for this beach: don’t turn your back on the ocean, beware of the rip tides, and if you have an earthquake, assume tsunami and move to higher ground.) But some of the other things we had talked up to her also showed up–a flight of pelicans, almost in slow motion, passed over our heads, a serious photo op if ever there was one. She got to see not just one, but FOUR horses, being ridden on the sands. We also saw those little bobbing brown heads that are seals. And of course, the surf fishermen, the kites, the terns and other shore birds and, last but certainly not least, the ever-changing, ever-eternal ocean.

I was very glad to have this time with her. It’s the first chance that SIL and I have had time together without a major holiday and everyone else around. And lest you think that I monopolized her time, I made sure that she and her brother had time together without me as well. Maybe not as much as she and I did, but hey, they already knew each other. Even with the limitations of our disabilities, we had a great time having her here and found that we could push ourselves to the point of being able to spend as much time with her as possible. We only had to beg off from a couple of late night talk sessions–and she allowed as she was tired, too–so that wasn’t too bad.

One of the last things she did while here was something that she had asked me to check out and go with her–she was ready for her first tattoo!! I did my research around here and found a one man shop, with a tattoo artist who is amazing to be her first. (But not her last, as she already had plans for several more tattoos in her head…which I think will find solid form on paper now that she knows what tattooing is all about.) And of course, I couldn’t let her go all alone…so I got my 14th tattoo, as seen here:

This is my purple butterfly for Fibromyalgia Awareness, a permanent sign of both my disease and a hope for a cure or at least better treatments for the conditions it brings with it. Amazing scrollwork, very fine lines for the outline, just great work all around–to the point where I may have to start saving up for (and doing in stages) the half-sleeve tattoo I’d like to have on my right arm. The left is saved for a military-style “flash”, where badges are located on the uniform, for a personal tattoo that represents me and the Beloved. The half-sleeve will be a compendium of my life, my children and grandchildren, things that are important to me. I feel that I have finally found an artist I can work with, whose style is very complementary to what I want my tattoo to look like.

So SIL and I bonded through ink and needles, as well as some amazing meals. She is seriously considering basing out of here once she’s out of school, as she will essentially freelance costume design–this keeps her from being limited to one company, one place. I also suspect that her (and Beloved’s) parents may also end up here, having both retired just this past May. They are already making tentative plans to come see us at the end of summer, beginning of fall–and I think SIL’s report will only encourage them to visit us. They want to live near their children, and since Beloved and I are already out here…and SIL may also be, just stands to reason that we will soon all have CA addresses.

This was the closest thing to a vacation we’ve had, almost ever, in our 4 years together. It was fun and tiring, happy and way too short–and I’m so glad we got to share it with her. We are looking forward to repeating the formula of good eats when the parents come out–and Beloved’s best friend, who is to visit us next month. How lucky are we, to have all this good food around us–and to be able to share it with the people who mean the most to us?

Now we rest up and recuperate, back to the usual schedule of doctor’s appointments and preparing for my SSDI adjudication the middle of August. Lots of memories were made this week and a half–and the last place we took SIL to, before putting her back on the airplane back to IL? The beach, of course.

The History of Fibromyalgia, for Kitty: A One Woman Saga

Looking back over the years and trying to pinpoint where the fibromyalgia began takes me back all the way to high school.  I had Osgood Schlatter’s disease , where the bones in the legs grow at different rates and it hurts like hell.  I’d have been about 15 years old.  My mother said that I was more accurate than the local meteorologists, always knowing when the weather was changing.  Physical exertion (re: PE class) just made the knees worse so I got a doctor’s note excusing me from the class for the last two years of high school.

I enlisted in the USAF and will confess here and now that I NEVER met the physical tests, never ran the mile and a half, barely did the sit ups.  I was allowed to slide, so I did all four years of my enlistment…and there was pain.  When I look back over all those years, all that time between now and then, it seems like there has always been pain.

At least it wasn’t as debilitating as it is now.  I received my honorable discharge and went to work at the local department store.  The standing tired me out and made me hurt…so that didn’t last very long.  Then I was doing home help for the elderly.  Stopped doing that to have a baby…my son was born in 86 and I became a stay at home mom.  I didn’t realize it, but I was already making accommodations even then–do some of the dishes, sit down for a while.  Vacuum a couple of rooms, take a break.  Take some aspirin when it hurt too much, still predicted the weather better than the news.

We moved to Germany in 87.  My (then) husband was looking forward to a “real” winter after 7 years in the Southwest US.  Joke was on him; Germany  had 4 of the mildest winters on record the 4 years we were there.  But there was still cold and I’d stiffen up and hurt.  I was also having cramps with my period, which I ascribed to having had a child, since I had not had that particular issue prior to childbirth.  We lived on the 4th floor and that was a serious climb for me.  I also did not drive (we only had one vehicle) but I could walk to the commissary or the local grocery store, pushing the stroller AND pulling the grocery cart.  There was a crosswalk over the street between the stores and our apartment and I’m not sure how I managed to get one, let alone two, wheeled and heavy carts up the first 3 flights of steps and then down the remaining 3 flights.  But I did, and always in carefully broken down parts, with a lot of rest.

I was told (and sort of believed) that I was merely out of shape, that I needed to do MORE, instead of resting so much.  But there was pain, increasing amounts of it, which led to increasing amounts of OTC pain killers.

My daughter was born in 88.  My poor son, just barely 2 years old, learned how to walk up ALL those steps we had because I simply could not carry him.  And my cleaning regimen slowed down as I would work a little, rest a little.  I had no idea that’s what was going on at that time, but looking back…well, hindsight is always 20/20.

We moved back to the States in 91.  We ended up in Rochester, NY, living 3 miles from Lake Ontario.  The three foulest, most obscene words in the human language are “lake effect snow”.  We got an average of 99 inches EACH year.  There was a sidewalk PLOW.  (Two words that should not go together: sidewalk and plow)  The weather was cold and when it wasn’t cold, it was cloudy.  Rochester only gets about 100 days of sunshine a year.  And I not only continued to be an excellent barometer, I improved at it.

I went to a respected rheumatologist, with the complaint that the pain exceeded aspirin and hot baths.  He did blood tests, manipulated my knee caps (to the point where I could hardly walk when he was done) and his end results?  His professional diagnosis?  That I had pain in my knees and should take aspirins and hot baths.  WTF?????

The pain increased and was seldom not present.  My primary care physician pointed me to naproxen sodium so that I wasn’t taking the massive amounts of aspirin I had attained.  My housecleaning ratios changed to being more rest than work, so it took longer to clean house.  I also added GERD (Gastro-Esophageal Reflux Disease) to my increasing medical folder.  I think this is the point where the migraines began to occur.  Not often, but completely debilitating when they did show up.

I went back to work in 96-97.  I became a nursing aide, helping take care of the little old people in a nursing home.  The work itself was rewarding, but very physical–so more Alleve (Naproxen Sodium) more often became standard.  Then I  moved to VA in 2000.  The first year and a half are pretty much a blur for me, with some specific memories.  I moved in with a friend and her significant other–and a houseful of children: hers, his, and eventually, mine.  Chaos and generally not a good scene led to my moving out (with my children of course) in the spring of 2002.  I was back to being a nursing aide after a stint in factory work (where I walked about 5 miles a night; if there was ever a time when I was “fit”, I think this would have been it–and there was still pain).

Started back to school to learn computer stuff, so for a while there it was a 40-45 hour work week, and class 12 hours a week, 4 hours x 3 nights.  And of course, still having teenagers in the house to care for.  Changed jobs from nursing to being a CSR in a call center.  I have no idea how I managed to do that for almost 2 years.  Or however long it was…like I said, no real clear memory of that time.

Got a job in DC, then moved to their office in Tyson’s, then back to DC and finally did the math and determined a 13 hour day was beyond my ability or desire to do…went back to working in the call center.

The eternal pain followed me everywhere, and began to extend beyond my knees, hips and legs.  I got wrist splints to support my hands because they began to hurt.  I remember sitting and talking with a friend when this awful lightning of pain went down my leg (my first noted experience with neuropathy, although not my last).  IBS (Irritable Bowel Syndrome) decided to show up during that time as well–it’s hard to run for the bathroom when your legs are stiff and hurt, but if you don’t….ewwwww.  I began to have periods of what I referred to as “riding the rollercoaster”, where everything would spin around me.  I was very grateful that it did not occur when I was driving.

I began to get clumsy and forgetful.  And any exertion required a period of resting.  And I didn’t really notice it, or keep track of it because it was insidious, slow and creeping into my life.  And always, always, the pain.  More pain.  I was up to taking about 6-8 Alleve a day (and all the doctors who are reading this are cringing).

And somewhere in here, I met my Beloved.  And for the first time in my life, I had someone who was paying attention to my health, who observed the various episodes and identified that there was a problem.  He insisted I see his doctor…who made the diagnosis of fibromyalgia.  And we began various drug therapies, trying to find the one that would let me live a life free of pain.

My first husband was healthy and did not have the medical knowledge or awareness that my Beloved has because of his own health issues.  So my first husband did not see my problems as anything more than a lack of fitness or my own laziness.  My children grew up with me like that, so they didn’t see the gradual decrease and like their father, didn’t have the medical knowledge to point out that I was getting worse.

Until I met my Beloved (aka “The Last Husband”), I HAD to keep going, had to keep on doing the things I had been doing, regardless of the cost of it to my health.  As he says, I was just doing the “keep on swimming, keep on swimming, swimming, swimming”…and when I was finally with him, I could stop swimming and come out on the beach, where my health (or lack thereof) was glaringly apparent.  I had someone I could lean on and rest, instead of being the one responsible for everyone else and unable to “stop swimming”.

And so it looked like I went from being healthy to being this wreck that I currently am…but that’s not true.  I have had a steady and persistent decline for the past 30 years (or more).  It was slow at first, but by the time both kids had left home, it was increasing in speed and severity.  And since I didn’t have to keep making the effort to seem healthy, in these past 3 years, I have watched it go fast enough that I hope we’ve hit rock bottom.  I mean, I can hardly move.  My house is filthy because I can’t clean it.  Going out to run simple errands requires a mustering of strength and effort which frequently leaves me so exhausted that I nap immediately upon return home.  I have problems swallowing sometimes–and that freaks me out.  And I get leg twitches that make a dog’s dreams look like nothing.  In fact, I get a sort of palsy or shaking all over, almost like a seizure and that makes me frantic.  Fortunately that doesn’t happen all that often.

I am currently on 3 pain meds: 10 mg Vicodin, tramadol, and neurontin; I take Lyrica and Cymbalta specifically for the fibro.  I take Excedrin for the headaches and I can add Alleve if the general pain levels are bad enough to give it one more thing to deal with pain.  I sleep a lot.  We are going to the pool when the weather permits, and that makes a difference for both of us.  Beloved is regaining muscle tone and me, I’m floating in a zero gravity pool that removes all the pain pressure points and is the least painful I ever am.  I’d spend all day in the pool if I could.  A little hard to go places, but hey….it helps with the pain!

Organic, chemical-free food seems to help.  The homemade, chemical-free cleaning products seem to help.  We are both hoping that our move to Eureka will indeed be the salvation we are hoping for.  If not, at least I can add marijuana to my pain regimen.  I already have this choice: no pills and pain, inability to do anything OR take my pills which make me higher than a kite and still have no ability to do anything…but at least it doesn’t hurt so bad.

There is no way to describe the pain a person with fibromyalgia feels.  Only someone else with it can know and understand.  It is a constant companion, from a mild level up to “just kill me now because I’ll feel better dead” level.  It never goes away, it never stops letting you know that it’s there, it interferes with everything–not just the bad stuff, but it’s there during what’s supposed to be a good time.  It colors everything you do, everything you plan.  Even with medication, you KNOW it will come back and sometimes, hurt all the more for having been subdued with that medication.  It destroys your life; it affects every relationship you have and might have.  It makes you feel ashamed for not being able to do things that you need to, or want to.

I think every person with fibro should get this as a bumper sticker:  “When I die, I’m going to Heaven because I’ve already had Fibromyalgia”.

So here I am, and there we are.  It is what it is, but what it is…is hard to explain meaningfully to another person.  I have tried.  I hope it’s a start to you understanding what it’s like.

Namaste!

UPDATE:

Went to the VA doctor, who took me off the Vicodin because I’m so obviously an addict who is trying to get enough to sell it on the street corner.  And he tripled the nuerontin, removed me from the Rytalin and while I have a script for Cymbalta, I can’t afford it, so…I tapered and have come completely off of it.  I am still on Clonipine for anxiety and Lisinapril and Lasix for high blood pressure and swelling in my feet and legs.  I feel more alert but am more clumsy; helluva trade off.  Go to see the VA head shrinker in August and the Rheumatologist in September.  Back to the PCP in October, when I can kiss him good bye, since I already have the address for the VA in Eureka.  Oh, and I FINALLY got my LTD claim approved and some money coming in, thank the Maker!