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


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!


New Year’s Observations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Father’s Day 2013 (Updated on Jun 28)

So I scrolled through my Facebook feed this morning, reading status after status of Father’s Day greetings.  Some were for fathers who have died but are still being acknowledged for the influence they had on their children.  Some were for the fathers of their children, even if they aren’t still a husband–and the fact that, once you have kids, you are connected to this man forever, no matter what you think or feel about him.

These messages were, almost 100%, positive and affirming, thanking men who had great influence on lives beyond merely donating genetic material for their lives.  Many posters changed their profile picture to one of their father, or of their father and them.  Several talked about the continued interaction they have with their fathers, even being adults themselves, and how this continues to make their lives more meaningful.

I guess you can tell that we’re not going to have that kind of conversation here.

I’ve blogged before about my father ( My Daddy ) so I won’t go into long details about my childhood here.  But I got to thinking, as I was reading my friends’ comments, that while I love my father, I feel no particular connection to him.  I may not even call him today because frankly, he’s getting old, he doesn’t hear well, he’s hard to understand on the phone–and he wants to talk about health issues and what I should be doing about mine.  There’s not much left for us to talk about; computers, how my car is doing, health.  When I do call, if he answers, once he realizes it’s me, he hands the phone over to my mom almost immediately.

I haven’t seen my father in almost 4 years; the last time I saw him (and my mother) was when they came to Baltimore to celebrate their 50th wedding anniversary with me, my children, my brother and his family.  We tried to make the trip as pleasant as possible and they both just complained about everything.  (Minor side not here: choosing the restaurant for the anniversary dinner was horrendous.  Suggestion after suggestion was made, internet research was done and menus were compared.  It finally came down to my father telling my mother, “ML, just pick one because you’re not going to like it anyways.”  Prophetic words.  They both groused about it later, how the food wasn’t that good and so on.  I thought it was really good and so did everyone else at the table.  Sigh.)

It is entirely possible that I will never see either parent again.  And when they die, I am not going to TX to the funeral(s).  I cannot afford it and I see no reason to go visit someone if they don’t know I’m there.  Hmmm visits.  I got to counting how many times I’ve seen my father after I left home to go into the AF (1980).  He visited MY house exactly ONE time.  I think the total is 8.  And one of those is actually the 3 month period when I lived with my grandmother (who lived just 5 minutes walking from my mother, her daughter).

So in my adult life I continued the pattern of my childhood–my father loves me, provides what he can, whether it be advice or material things, but he’s just not around.  My father is NOT my friend.  And I don’t mean that in a nasty way.  But you hang out with friends, you see them and call them regularly, you know what each other likes and dislikes.  I don’t do any of that with the man whose genetic information I carry.  I look like my father.  I cannot tell you what his favorite color, food, band or TV show is.  I don’t know what size he wears, or what kind of shirt he prefers.  In fact, there’s an awful lot about my dad that I don’t know.  And that’s true the other way around: he doesn’t know an awful lot about me.

So there’s no connection beyond that DNA thing.  Not really.  We might pretend that there is.  We can talk about “remember when” from a history of 18 years together–but I don’t remember the first 3 or 4 real well and to be blunt, he wasn’t there for a great deal of the other 14 years.  Not until I was in high school was he truly a routine part of my routine.  And folks, it’s been 34 years since that time existed.  We’ve all forgotten a lot about it, so there’s a few highlights that get mentioned whenever we’re talking about the good old days.  We don’t have any current congruent events to discuss.  And no upcoming common events to plan.  So no connection of the normal social interaction that defines friendship and family.  (You can have lots of family that has NO common DNA with you–it’s the family that you’ve chosen rather than the one you were born into.  And generally, these are better and more assured places for support, resources and emotional bonds.)

He IS my father.  As I said, I look like him.  Even with him being gone so much of my childhood, my mother has told me that in many ways, I act like him.  I believe that personality has at least 50% of its basis in your DNA; you are born with a personality framework that is in your genes.  THEN your environment either brings out or suppresses various parts of the personality.  So I can act like him without knowing how he acts.  He has many characteristics that I respect; he has done many great things in his life.  He has had an interesting and exciting life (and while it’s not over, I suspect that the drama factor has dropped substantially.  The biggest event now is driving up to San Antonio for his doctor’s appointments.  LOL).  But I do not have a bond with this man whose genetic traits I carry.

Father’s Day.  I honor my father for all that he has given me, for all that he has taught me, for the example he has been to me and my brother.  I respect him for the life he has led, even though I cannot tell you most of it.  I love him in a way that I will never love another man, but in many ways, he is still a stranger to me.  And all I can tell you for sure is that he is my father.

So I scrolled through my Facebook newsfeed, reading about fathers and feeling sad about these truths I hold about my father when I read my daughter’s status.  Like many others, she mentioned her biological father as well as the father of her children.  I read that status a couple of times and while I would have loved to click the “Like” button on this status as I had on so many others, I just could not.

Here’s why.  She could have mentioned a third man, honoring him for being another person in her life who loves her and is a resource for her–emotionally, physically, financially.  Someone who is there to talk to, who visits and who also loves her children.  Someone who has no children of his own, will have no grandchildren that look “just like grammpa!”.  A man who wanted nothing more than to be a part of my family–my husband.  It’s not that there is a nasty scene with high drama that explains why she didn’t mention him.  She CHOSE to preclude him from the status of “step dad” of her own free will and without any cause from him.  And this makes me both incredibly angry and terribly sad.

It affects me because it affects him.  I talked about this in my earlier blog, “Changes, Choices and Chagrin” and obviously, nothing has changed since then.  Today’s status was just another emotional slap in the face and frankly, I am not in a condition to deal with it.  Which is why I’m writing it here.  If I can write it down, share it with you, perhaps I can let it go out of my heart and not continue to cry about it.  He never wanted nor meant to replace her “real” father in her life.  And I truly believe that we can never have too many people who love us.  So it always makes me sad when people choose to refuse offers of genuine love and support.

I was told that it would get confusing to the granddaughter to have all these grandparents, that the biological father’s wife wasn’t being called “grandma” either, so my husband didn’t have to feel that he was being singled out.  Well, guess what?  No child can have too many people to love them, either.  And just exactly WHAT do you call the husband of your grandmother or the wife of your grandfather?  I was initially told that the title also could not be used because we weren’t married.  And the impression I got was that there was this conga line of men going through my life, and it WOULD get confusing if Grandmom had a new grandfather with her every time she visited.  Not sure where that impression was based, because Beloved was the first man I had dated in several years, and the first man I moved in and was living with since a relationship that had died in 2002.  We’re not talking conga line.  We’re barely talking MEN plural.  And regardless of that, we ARE married now.  Have been for quite a while.

And it’s not confusing to the kids if you say “Grandmom Lisa and Granddad John are coming over.” And then there’s Granddad Bill and his wife, Grandmom Julie.  And considering that my daughter’s quasi-in-laws are also divorced and there’s 4 of them as well…it’s just the way things are, and there’s a lot of families that are having to use this same kind of naming system because divorce occurs so often.  This doesn’t even begin to include the “greats”–the still living parents of the grandparents.  Or the dear, dear family friend who is too old to be “Auntie” or “Unk”.  And when a small child is referring to this one as a grandparent, do they call the spouse by their first name?  Unless said spouse has indicated that’s the preferred method of naming, it’s kinda rude.

“The child will pick their own name for the (not) step-grandparent.”  Really?  Then we’re in real trouble, especially considering that my Froggy calls his other grandmother “Nut Nut”.  And my granddaughter calls her (not) step-grandmother “Poopie”.  No thanks.  I’d like SOME control over what I’m going to hear out my beloved grandchildren’s mouths for the next oh 18 years.  Truthfully, I’m not caught up in the title part.  I really am okay with my grandchildren calling me by my name.  It’s short, it’s easy, even a child can say it without too much problem: Kate.  But that denies the social nicety, almost necessity of that title, which defines my relationship to the child.  Which is why I’m peeved that my husband is going to have to be explained–and the explanation comes down to, “This man is my grandmother’s husband, but he’s NOT my grandfather.”  Fuck that shit.

And up a generation, the introduction sounds like this: “This is my mother’s husband, but he’s NOT my father.”  Wow.  Really?  What’s wrong with, “This is Jim, my stepdad.”  Because there are step-parents who are as bad (or worse) than your biological ones.  It’s a title, it explains the relationship between the two people without having to make someone feel bad because you talk around the connection.  Oh connection.  That’s right, it has been chosen to refuse that connection.  And in refusing to make *that* connection, the grandchildren are also denied the connection.  It could not be made any clearer that my Beloved, MY husband, is not a part of my family.

My family, that I have loved and thought was strong, my children who I also call my friends.  Seems like I was wrong and I’m not sure where I lost that.  But it’s gone.  I have to acknowledge that while we have a different relationship than if we were just parent and child, we really aren’t friends any more, for the reasons listed above about why my father and I aren’t friends.  Same reasons, same results.  And if I have to choose between my children, who are grown and have children (and lives) of their own–and my husband, there’s no choice.  Why should I give up my happiness and my love to sit at home and wait for my children to visit me at their convenience?  They have lives of their own, it is not their responsibility to take care of me nor to be at my beck and call–or even to be a regular part of my life, given the geographical distances there are between us.

I expect them to be smart enough to know that the last sentence works both directions.  I have a life of my own, with my own Beloved and this is the life that I choose.  I do NOT choose to exclude my genetic offspring.  I would prefer to see them often, to have time together…but it’s just not the reality of our lives.  I have offspring by choice–young people who do seek me out, that I spend time with, who are my friends.  I consider them family just as much as the 3 I pushed out of my body and into the world.  That genetic bond will always, always be there; I do and will always love the children of my body dearly and would do anything I could for them if they needed it–BUT I will also live my own life, with my love, with the family of my choosing.  I hope that I will choose wisely and always welcome into my life the people who will love me, support me, be a resource and a help to me.  I know that people will come and go; there is a tide to who is in the family just as sure as the tides of the ocean.  Being related means that you get first dibs, but you don’t get the only dibs.  And if you don’t maintain the other relationship ties, the genetic tie can end up not being enough to say that you are family any more.

I say this even as I acknowledge that I have both a mother and a father, still living.  I have a brother (who has his own family).  Are the original four members of the first family I ever knew still a family?  No.  Not really.  Being family requires effort, it’s a relationship, same as being in love, or being married, or being friends.  It requires the expenditure of time definitely and money possibly.  It requires commitment…and I am feeling very unhappy that my daughter and her love, the parents of my granddaughters, will not accept my commitment to my husband nor do they welcome the chance for a new commitment to someone who would be another person to love them–and their children.  I feel very unhappy that my son apparently has some of the same hesitations, although our interactions with him have not been as strained or requiring as much conversation as I have had with my daughter.

I cannot tell if this is just a part of their concern for me.  The rapidity with which my Beloved and I went from meeting to married was…well, whirlwind.  (See “The Case of the Disappearing Queen“)  I can’t tell if the timing of my decline in health and our being together has seemed too coincidental and therefore, it’s *his* fault.  Which it’s not–and apparently, no one has considered where I would be health-wise if I did not have him with me.  I shudder to think what state I’d be in, physically and mentally, if I did not have him to help me, to care for me when I need it and to have been a financial resource when I couldn’t work.  OMG, I’d probably have a dreadful life of work and sleep with no ability to do anything else–and I would not be diagnosed, so I’d be getting sicker and sicker, taking more and more OTC drugs to try and handle the pain…don’t want to think about it.

What began as a routine Sunday has been changed into a long rant about fathers, family and what constitutes both–and what doesn’t.  I think I feel a bit better, although sadly resigned to the way things are in my life, both in the direction of my father as well as in the direction of my children.  I am going to be posting another blog pretty quickly behind this one, as things have been happening and I haven’t been telling you about them, but they are separate from this one.  Thank you for listening, maybe this has started some introspection of your own about your father and your family.  As I told Beloved, the best definition for enlightenment is probably this: Learning something you really didn’t want to know, but knowing that it’s true.  Sigh.

Namaste, and Happy Father’s Day!  (We all have one, no matter what!)



So.  Things have happened, conversations have occurred and I need to make an update to this blog.

I owe some apologies to people who were mentioned earlier.  First, for “airing dirty laundry” in public, “all over Facebook”.  Even though I don’t use names, if you know me, you know who I mean when I talk about my family.  So it’s not as discrete as perhaps it should be.  On the other hand, this is MY blog and while the link gets posted in FB, I find it really hard to believe that EVERYONE reads it.  If they do, then I have a larger audience than I ever imagined.  

Second, I apologize to everyone that I “pushed” my husband on.  In my love and enthusiasm, I wanted everyone who knew me to love him as much and accept him as someone with a greater claim to association than perhaps they felt comfortable with at first meeting.  He was also enthusiastic about having instant relationships, again, simply by association to being with me.  He is a generous man, who believes that if he has it, does not need but you do, will then give said item(s) to you for your benefit.  It may be something as simple as sharing the names of his favorite sci fi authors, or the information he has gained about organic foods.  It can also include physical things, from a shared meal that you don’t have to pay for, to a book that he thinks you will enjoy, even up to expensive electronics that are on “permanent loan” until it can be paid back over time–and the cost is always at a loss to him.  

Unfortunately, his bipolar disorder causes some behaviors that may not be understood by others.  He loves to talk about his gaming, or military history…and when he knows about a topic, he KNOWS about a topic.  And the more enthused he gets, the louder he gets.  (Doesn’t help that he’s got moderately severe hearing loss in both ears.)  He is also particularly susceptible to emotional swings (he’s bipolar, remember?) and a casual remark that seems slighting to him can push him into depression faster than Superman changes his clothes.  If he were diabetic, I’d warn people not to give him sugary things.  There’s no nice or easy way to warn them about the various manifestations of his disease–which is mostly controlled by his meds, but the stress anxiety disorder rears its head up and makes some visits with people really interesting.  Let’s just say that he needs ALL that he can take for stress before going to see his mother…a major source of anxiety every time we go.  

So he’s not “normal”, does not react to things the same way as you or I.  He was thrilled to think of my family as suddenly being “his” family too.  Neither of us considered that relationships don’t spring into being…and we should have.  We’re not around children very often…and even though he would love to have a child, it’s obvious that we’re not going to.  So he lacks some of the social skills for interacting with the little ones.  Watching him hold a newborn was amusing because it was very apparent that he felt like he was holding a piece of dainty china!  I also suspect that his size can be a bit intimidating to the little people, and as a person they’ve just met, or met before but not seen very often, they may not initiate interaction with him–and he has no idea how to start up playing with them.  He has really very little experience with anyone younger than about 15-16 years old.  But he does enjoy contact when it occurs; he tries to be welcoming to them and having a good time with them. And children are much more accepting than adults.  

Having said that, it is important to tell you that it was never meant for him to supplant an already present family member.  NEVER.  But he is not considered to be a part of the family at all.  He’s just “my husband”.  It’s apparently irrelevant that by being “my husband”, he is MY family.  He and I are related, by love and by law.  

I think that my biggest problem with this, even as I understand the reluctance to give him not even the same, but similar name, to other family members is that I never hesitated to consider various other people who came into our lives over the years as family members…I have a “son by another mother” and a couple of daughters that I did not give birth to.  I’ve had sisters by another mister…and even some older friends who felt like aunts, uncles or even grandparents.  An insistence that only people related by blood and DNA can be given familial titles is something that I find extremely limiting.  And in limiting them by title, you do the relationship an injustice–and can end up not realizing just how much like a “true” family member they are.

You are related to some people by blood and DNA.  And they may not be good for you; they may be abusive, or neglectful (its own sort of abuse) or they may simply just not want the very best for you and are nothing but a negative influence in your life.  They may be leeches, in subtle ways as they wear you out emotionally, or in more obvious ways as they live off of your efforts, including your money.  They may have all sorts of bad, unpleasant or obnoxious behaviors–and if they weren’t related to you by blood and DNA, you would have NOTHING to do with them.  So why do you accept behavior you find deplorable from someone, just because they are “related” to you?  You don’t have to.

And other the hand, there are people that you meet–in the grocery store, at the library, in a bar; you might meet them by being introduced to them by a friend or your blood relative.  And the Universe has put them into your path because they can help you, they can be a resource for wisdom–or money; they can be a sounding board for your new ideas because you know that they will give fair assessments and plausible suggestions to make those dreams come true.  Sometimes, they do end up replacing a “real” relative who has died because they have taken on the role that relative was for you.  

“Home is the place that when you go there, they have to take you in.”  And home is not a specific building, just to be clear.  There are plenty of folk who have been kicked out the home they thought they had, told never to come back.  Or when they need to return because their life hasn’t gone well, they are grudgingly allowed back, and served up a litany of how rotten they are, what a loser they are… So sometimes being blood related ain’t worth shit.

Which is why I have said, over and over again, that you have family that you are related to, but don’t HAVE to endure…and you have the family that you choose.  These are the people that you KNOW have your back, that will welcome you into their home no matter what time of day, to let you stay as long as you need to.  They will give you money, food, clothes and their car without question.  They will comfort you when things get bad, and cheer you when good stuff happens.  And in this family that you’ve made, there might actually be several “moms”, a “dad” or two…some uncles, some sisters, some whatevers…it’s just about having a group of people that love you, just as you are.  They are a resource and a refuge whenever you need them.  And it’s always a joy (and generally lots of fun) to be with them.

Frankly, I do not understand why anyone would want to limit this chosen family, to keep the familial titles for those who share DNA–even when those DNA sharers aren’t worth the time of day.  I don’t, and won’t.  So I guess I tend to forget that not everyone wants to just add people in, willy nilly.  So I apologize for that as well.

I never meant to make anyone feel unhappy or uncomfortable at any point since meeting my Beloved.  I can only point to my enthusiasm for finding the love of my life as the reason for wanting to include him at every level with my family, related and chosen.  I failed with both and now there’s just him and me.  Which may be sad, but perhaps as it was supposed to be, so that the move to CA would not be as heartbreaking, having to leave everyone behind.  Even the ones I thought might be going with us will not be going at the same time…and things can change, so we shall have to wait and see.  

I hope that we can continue to communicate with those we leave behind–yay for the Interwebs, Skype and FB. And maybe, just maybe…people will at least come to visit?

Namaste once again, my friends–and my family.

It’s All in Your Head

You’ve read a lot about me and my fibromyalgia.  I’ve tried to share what it’s like to live with a chronic disease that affects my neurological system and by association, affects every part of me at some point or another.  This post is not about fibromyalgia.  It’s about my Beloved and his chronic disease that affects his entire life.  (And mine, by association.)

He doesn’t have fibro.  My husband has been diagnosed as Bipolar, Category 1, with OCD; he also has stress anxiety disorder and PTSD (Post Traumatic Stress Disease).  He actually got upgraded since his initial diagnosis, several years ago, was Bipolar Category 2, without all the other letters after it.  What caused the change?  Six years of working for a company that uses the Dorito method of dealing with employees: “Crunch them up, it’s okay, we’ll just get more”.  Almost 3 years of working for a manager whose first act upon taking the position was to inform Beloved’s specialty team that “they didn’t belong here” and that she would “shut them down and make them go away”.  And she did all she could to kill the team, including lying to her superiors about their performance.  She would change the metrics required for their job, even including calls per hour–at an INbound call center.  How can you require a certain number of phone calls by your people when that is totally dependent on the clients calling in and there is no way for an agent to make that happen?

An anonymous complaint was filed, citing hostile work environment (duh) and HR sent a representative down from the head office.  There was a meeting with the entire team (and NO managers or supervisors) and the HR rep asked what had been going on.  When she was told, she wavered between extreme anger and complete disbelief.  Beloved was very open and told her all about the problems–but he was having increasing anxiety and fear that the management level would think he had ratted them out–since he had always been very vocal about the problems as they were happening.  He was afraid they would retaliate, even though they would have then gotten into trouble–but that wouldn’t have helped him if they had fired him.  Hooray for VA, a “right to work” state.

Suffice it to say that in the long run, the negative effects on the team were ameliorated as much as possible, although the team itself was still dissolved.  The manager in question was told to resign and every effort was made to keep the team employed, which would not have happened if the complaint had not been filed.

However…that did not help my Beloved. The day after the meeting, he was showered and dressed and ready to leave for work.  Stretching his hand out to pick up the car keys, he froze and his hand began to shake.  He could not, just could not pick up those keys.  He could not return to work and was so overwrought that he was crying and almost hysterical (but in a quiet way, not screaming).  He was having a first class anxiety attack.

Now remember, feelings are created by chemicals in your brain.  You have no control over what chemicals may flood your synapses at any moment and can only react to the feelings they induce.  It’s vital to understand that this is a physical, CHEMICAL process we are talking about. This has NOTHING to do with a person’s character, personality or their “mind”, or how they think.  This is just the same thing as the pancreas creating insulin to break down the sugar someone has ingested.  It’s a PHYSICAL thing. In this case, his brain was being flooded with feelings of fear, triggering the infamous “fight or flight” mode–but without an apparent reason, it caused essentially an alternating “go-no go” loop in the chemicals which completely shut down his ability to function.

My first act was to calm him as best I could, then call our PCP.  I insisted on an appointment that day and they were able to squeeze him in with our alternate physician. He had two more anxiety attacks during the time between the first one and arriving at the doctor’s office that afternoon.  He was talking fast but not making much sense, trying to describe what was going on but it was changing so fast that he couldn’t keep up.  It’s a bipolar condition known as “mixed state”–when you are manic, or energized, enough to DO things, but depressed enough that you lack normal inhibitions and your impulse control is nil.  In other words, this is the mental state of the crazed gunman, sitting up in a bell tower, shooting at the pedestrians below.  NOT good at all.

I could see the doctor subconsciously backing up until she was plastered to the wall, watching him with wide eyes.  I didn’t think he was dangerous, but he wouldn’t shut up.  He was essentially bombarding us with words. “It’s called Xanax,” she said.  And wrote him a prescription to cover him over the weekend and then Monday, we’d come back to see our main physician.  We went immediately to the pharmacy and filled the script–and he took one.  It works, I will say that.  It works almost immediately but the effects are temporary–it also leaves the body rather quickly.  One pill was good for about 5-6 hours, and then he’d need to take another one.  On the other hand, his blood pressure on Friday was approaching the stroke level.  On Monday…the lowest it had ever been since he had started seeing the doctor, almost 10 years ago.  So Xanax is a wonderful thing.

We come back and talk to the doctor…who again, is backing up and watching Beloved very carefully.  And he is obviously working up to saying something to us that he’s not sure how it will be taken–he wants Beloved to voluntarily enter a mental health institution.  You know, the loony bin.  I felt so relieved, because I had been trying to figure out how to tell my dearest husband that I was going to take him to the loony bin–even before the doctor said he needed it.  I knew that he was beyond my ability to help and that the help he required was going to require hospitalization. He agreed.  SUCH relief.  Beloved is a SMART man and he also realized that his condition was beyond a few little pills and a couple of days of from work.

He was terrified of being admitted into a psychiatric unit without his consent–but going on his own made the difference and so he would do it.  He asked the doctor when…who replied, “Right now.  Leave here and go.  Your choices are Fairfax or UVA.” and I told him that since they were about the same distance from our home, and the ride to UVA was prettier, we’d go there. And so we did.  The doctors there agreed that he needed hospitalization–but with all the cuts to mental health budgets, their ward had gone from 40 beds to 23 and they didn’t have room for him.  It took all of her 8 hour shift for the social worker to finally find a bed–in Salem, down near Staunton.  A four hour drive for us.  Which worked out because it meant that I would not try to drive down to see him every day.

He stayed for 5 days–which was actually 2 days more than the usual patient.  They were afraid that when he got out, he would go kill his boss (and as the source for all his anguish, a not unreasonable thought).  He willingly attended every group meeting, taking part and actually helping some of his peers with fresh insight into their own issues.  Like any other problem he’s had, he attacked every aspect of it that he could, finding out what he didn’t know and then arranging it into a comprehensive picture in order to understand and deal with this.

We had some pretty major discussions about the fact that his problem IS a chemical one, not a personality flaw or some defect in who he is.  It’s no different than treating a diabetic with insulin and should carry that much stigma (in other words, no stigma at all).  Unfortunately, mental disease/mental health is NOT treated the same as an obvious physical illness or injury.  And doubly unfortunate, his mother believes the stigma and thinks his problem is…well, all in his head.  It is, but not the way she sees it.

Beloved is also fighting the fact that he had years of thinking the psychiatry and mental illness are all bullshit.  Now, faced with the reality of the condition of his mind and the problems that he is having because of the incorrect chemistry, he’s having to revise his opinion and try not to let his mother overwhelm him with her negativity.  He is learning how to explain what’s wrong in terms that really bring home that fact that this IS a physical problem and that he can’t just “think” it away.  He’s also becoming angry at the lack of sufficient and adequate care for those who suffer from mental illness and disease.  It’s a nationwide problem, so even leaving VA to find some place else that has care would not work.

He has had to accept the idea that he began to have this disease when he was a teenager.  Well, teens are moody, and they switch moods fast, so who is going to notice bipolar symptoms?  Most diagnoses are made when the person is in their early 30’s–just like Beloved.  He has been just below the “zero line” for general mood most of his life–that means that he’s sort of depressed without being clinically depressed.  Or to explain it better, he told me that other people came to him to solve their problems, and he never got flustered or upset and he could help them.  I pointed out that he didn’t have the energy to get angry about it, so yes, he was a rock of salvation simply because he lacked the energy (better mood) to be anything else.  Oops.  Yeah, that would be about it.

He’s having to relearn everything, go back over everything that has happened to him and look at it through the filters of proper medication, rather than through bipolar disease.  Like the scene in “Mr. and Mrs. Smith” when they find out each is an assassin and he tells her, “We’re going to have to have every conversation we’ve ever had, again.” Like going through life with bad eyesight, learning about the world completely out of focus and then one day, you get glasses–or lasix–and suddenly, it’s all in focus and looks completely different than you had thought.

It is, simply put, a life changing event.  To be bipolar and not properly treated, to have accommodations and shortcuts that are a direct result of having to deal with a world that’s just not quite in focus….and then to suddenly have it go into focus and have to start over.  Add the stress anxiety and the PTSD to this and no wonder the man has crying jags.  I would, too.  It’s overwhelming all by itself, to deal with all this chemistry, feeling like your brain is not your own.  Now add the worry of money and concern for your spouse who also has health issues…and it’s a major cluster fuck, everything is out of control and you’re a person who likes to have things under control.  Oh dear.

And where does this leave me?  Because that’s really what this blog is about.  It’s not just about my Beloved, it’s about my life with my Beloved.  It’s how he and I live, what we do together and how we fight the battles we are facing.  Bad enough to have to fight fibromyalgia.  Worse yet to have to fight it while learning how to live with someone who has a brain disease that causes erratic behavior.  He also struggles with long term, unresolved anger–which can flare up for no apparent reason.  His disease MUST always be on my mind, constantly figured into any interaction I am going to have with him.  He is amazingly aware of how his mind works and is very adept at explaining the shifting moods and his actions, even if he cannot control what is actually happening.  He can, and does, make every effort to be pleasant and calm, even when he is not feeling that way.  He reassures me that I have not caused the anger or the unhappiness and then we just deal with the feelings.

Our doctor had told Beloved that he has “used up all the ability to handle stress for his lifetime” and we are coming to believe that is so.  As long as there is no stress, no palpable anxiety, no demands on his damaged psyche…he manages fine.  He is not handicapped, not unable to care for himself or to participate in Facebook conversations.  But he is finding that he prefers to NOT go out without me and having to do so makes him nervous and upset.  And then there’s money…the root of all evil and a major source of stress–when you don’t know if you’re going to have any, you get a little wacky.  No one would argue with that–but it is a tiger that has sunk its teeth into his leg and won’t let go.  It’s a boulder, crushing down on his body and he can’t get out from under it.  It is unrelenting and unbearable–and he’s trying to deal with it even as he does all the other things he needs to do to heal the wounds caused by the imbalance in his brain’s chemistry.

He sleeps a lot.  Sleep resets the brain chemistry and forestalls some of the swinging that bipolar causes.  Even on the correct medications, at about the correct dosages, he is still having episodes of mixed state.  He cries easily and then despises himself for “being a baby” even though the tears are washing toxins out of the system.  He needs to cry, there’s so many reasons for sadness that makes tears appropriate, even necessary.  He needs to release that anger as well but finding an appropriate way to safely vent it is harder.

I’m learning how to recognize the bad moods (the mixed state or rapid swinging from manic to depressed and back again).  I remind him to take his medications and I don’t argue when he supplements that by self-medicating with alcohol or tobacco.  I leave him alone when he’s working out anger or just a bad mood (chemicals, remember?) and I am always there when he’s ready to interact with me again.  He used to be a call center agent, on the phone all day long talking to people.  He now has anxiety about even touching the phone, even when it’s his friends that he would like to talk to…so I handle making calls about this insurance or that medication or paying the bills.  He has to take an anti-anxiety pill and prepare himself to actually make the calls that only he can make.  Stupid thing, he can’t deal with the phone–such a common thing, everyone has one, everyone is talking or texting on it all the time…and it makes him unable to function.

This is all so unfair to him, so completely unfair.  He worked hard, he did his best, he excelled at his job and he was viewed as the leader for the team because of that ability.  He is a good man, treats people well, tries to always do the right thing even if it costs him time, money or effort. BUT He’s got this disease, a mental disease, that has stripped him of his dignity by making him unable to do his job and therefore not able to support his wife.  It has made him look like a slacker and lazy good-for-nothing to his parents (mostly his mother) because it’s all in his head.  It doesn’t help that he also thinks that if he just straightens up, puts his shoulders back and forges onward, it will all go away and he’ll be fine again…even though he knows that it won’t.  It’s just the feeling that he can out-think it, can force it into some box in the back of his mind, lock it up and never have to deal with it again.  Did I mention that he has a disease that affects his brain chemistry, which includes feelings?  I think what got him to actually seek help was the realization that he could become that crazy gunman, up in the bell tower…very easily and with almost no effort because of the chemistry in his brain and how that makes him feel.

We’ve both acknowledged that without the other, we would each have sought the ultimate solution to the pain and unyielding stress of life–in other words, suicidal ideation.  We’ve thought and even to a certain extent, planned to commit suicide.  But we will not leave each other, and so we cling together, trying to work our way out of the brambles and onto the path.  A lot of the problems will disappear with the onset of a steady income, at least we hope so.

So I deal with the fibro and I deal with a husband who I call a loony to his face.  As far as we’re concerned, his mental illness is just part of the reality of our life and it has long term effects that he is just now realizing.  He cannot go back to work within the skill set he has gained over the past 20 years.  If he is to have a job, it must not involve phones, or people calling in, or anything that can cause him stress.  That pretty much cuts out any job.  Which is why we’re fighting for the SSDI for both of us.  He needs time to do some healing, to learn how to be “normal”, if there is such a thing and if the medications really do get him to that level–it’s so subjective.

There’s a LOT of stuff that doesn’t get done in the house because I cannot do it and he doesn’t even consider that it needs to be done.  I don’t know how much of that is being male (sorry, men, but you are not known as good housekeepers) and how much is the bipolar disease.  We need to get some of it done because we need to have a house that is cleaner and neater–so he has finally reached the point where he’s willing to get rid of some of the stuff he’s been dragging around behind him for years.  Me, too.  Truthfully, at this point, I’m just about ready to throw it all away without even opening the boxes if I can get my house in order.

So we’re both learning about living with mental illness, the stigma attached to it and the serious lack of proper care at all levels for those who are mentally ill.  Finding the right doctors for him is a real challenge–his psychiatrist was down in Fishersville, a 2 hour drive–in each direction.  Four hours in the car for 10 minutes in this man’s office and in the long run, he was not worth the effort.  Without health insurance, we will have to take what we can get in the free clinic, since as my grandmother would tell you, “beggars can’t be choosers”.  It’s a real lesson in humility–and also in hope, as we figure out what life is like for a bipolar man and a woman with fibromyalgia who love each other regardless.


Pride or Honor?

This is going to be about some of the effects of fibromyalgia that aren’t physical, that cannot be handled with a pill or a hot shower, and are just as real and enduring as the disease itself.  It’s about…Social Services.

I’ve told you that we’re poor, that we have no income at this point and are living on the kindness of strangers and the dutiful assistance of his parents.  We are waiting for the approval and subsequent pay out of long term disability benefits, and of course, both of us have entered the fun house of the SSDI application and approval system.  So what do you do when you have no money and there’s none scheduled in (at least in your name alone rather than on someone else’s check)?

You take your pride off and put in the closet, then go down to Social Services to ask for food stamps–or as they call them now, “SNAP” (Supplemental Nutrition Assistance Program).

Pride cannot be eaten; will not pay the bills; is not acceptable tender for purchasing groceries or filling the car with petrol.  And the definition of pride is “a feeling of pleasure from one’s own achievements, the achievements of those with whom one is associated, or from qualities or possessions”.  Very different from honor, which is “honesty, fairness, or integrity in one’s beliefs and actions: a man of honor.”  Pride is an emotion and while sometimes it can be appropriate, it is still about ego and a sense of self-importance, HOW you feel, while honor is WHO you are and has nothing to do with pride except that you can be proud that you have honor.  Am I making sense?  I hope so because my dearest Beloved is a most honorable man, a man filled with honor and … he’s proud of that, rightfully so.

So going to take a hand out from the government, even though we’ve both paid our taxes for years and therefore have some right to ask for this help…it vexes him.  It’s very hard for an honorable man, used to working to pay his way, to have to ask someone else to foot the bill.  As grateful as we are for the parents’ help, he doesn’t like asking them either and not just because of the required song and dance about how we’re destroying their retirement money (well, it’s not quite as blatant as that, but it does require a certain level of request and demur), but because he wants to pay for things himself.  And he’s not a stupid man, my Beloved; he KNOWS what people think about those that they perceive as being slackers on the dole, and he doesn’t want to be looked at that way.  I get that.

And me?  I have no pride, at least not where the practical matters of my next meal exist.  I will take anything they want to give me, sign up for any program that will ease the financial (and associated emotional/mental) stress.  Now either this makes a much better Buddhist than I thought I was, or maybe I’m just too stupid to be proud but either way, I had no problem going down to the county office for Social Services.  I see nothing wrong or shameful in it–although I also know what people think about the “slackers on the dole”.  Frankly, I don’t care.  They don’t know me, they don’t know what’s going on in my life, they have no idea why I need help and it’s not actually any of their business since I am not bilking or defrauding the system.

It was not a particularly onerous chore.  The office was not packed with “welfare moms” and their ahem…the best term I’ve ever heard for it is “crotch fruit”… babies you keep having so that you get mo’ money.  Nope.  On the other hand, it was a poignant sign of our economy that the people who were in the office were a good cross section of our population: white and black, latino; older, younger, ONE child, 3 “tweens”; singles and married.  Not one good stereotype-able kind of person.  No one in rags or dirty, just regular people…like us…who need help getting by.

The staff was professional and polite, even kind.  The lady who interviewed us explained things carefully, told us about other services we can apply for and gave us that information in printed form so we can follow up on it if we need to.  She made sure we understood how food stamps work–just like a debit card actually–and how to set up the card for first use.  Because we have no income at this time, they expedited the process so we walked out of the office, SNAP in hand.  Oh snap!  I did not think we would be able to get it that fast, figured like most bureaucracy requirements we’d have to wait at least a week.  And I did like the fact that both the staff member on the phone when I called to see if I needed an appointment and the receptionist who greeted me at the office each immediately asked if there were children in the household when I asked about food stamps.

And the other clients who came in as we waited?  Didn’t stare at us like we were aliens–beyond the normal glances we get, since we are both somewhat notable (Beloved is a large man and I have long silver hair, which apparently catches the eye).  Spoke quietly to the receptionist, spoke politely and pleasantly to their case processors as they left.  There was a sense of camaraderie, that we’re all in a common boat.  True enough.

The amount we receive per month will be more than sufficient to get groceries, even the (expensive but worth it) organics we are trying to eat.  Of course, as we do get some income we will report that and adjustments will be made–but in the meantime, we won’t starve.  We might still end up living in the car, but by gods we’ll have great meals if we do.

So what’s the “take away” of this blog?  That fibromyalgia may so incapacitate you that you cannot work, that you will have to apply for permanent disability and that while you are waiting for that extremely bureaucratic process to wend its way through the required maze of hoops and challenges to see who gets voted off the system…you may have to ask for public assistance, aka Social Services.  Don’t be ashamed of it if you must.  Don’t go hungry or get your utilities shut off because you’re too proud to ask for that help.  Get rid of any pride that stands in the way of your ultimate well being–and go, with honor, to your county Social Services office.  There is no loss of honor in being strong enough to admit that you cannot do it all on your own, that you are strong enough to accept help both when it is offered and when it is needed.  You don’t have to be proud that you are on public assistance, but you can certainly keep your honor by using it the way it is meant to be used, not abusing it and letting go of it when things change for you and you no longer need it.  Pride is what you feel; honor is who you are–and is the more important of the two, any day of the week.


And Life Goes On…

So it’s been a little while since I’ve written specifically about my good friend, fibromyalgia.  And his sweetheart, Pain, who accompanies him everywhere.

The increase in meds has been helping.  I am certainly taking less Vicodin than I was several months ago.  There are more good days than bad, but the bad ones catch me sort of off guard, seem to hit a little harder as I have more days where I feel almost like I used to.  And I still can crash hard and fast, with little warning–which is very disheartening.

I am trying to rebuild all the muscle tone (haha, as if I ever had any!) and endurance I have lost sitting in a chair for most of this year.  Beloved and I have started going to the pool–which is fortunately RIGHT next door to our apartment.  He swims energetically and I just paddle around.  With my right shoulder as sore and tight as it is, doing much of any recognizable swim stroke is out of the question.  But at least just moving around in the water is more activity than I was doing.  It’s a start, right?

Any life outside of the house is mostly comprised of doctor visits and grocery store shopping.  We have added a new person: the lawyer who is going to assist us in applying for permanent disability with the Social Security Administration.  We could do this by ourselves, but given the complexity of the system, the pathway through denial and appeals, up to a court hearing–it just seems better to have someone who can steer us through the shoals.  She seems to feel that both of us stand a very good chance of being approved, which was good to hear.  It will of course take a while, as all bureaucratic quests require leveling up in the labyrinth.  And fighting the boss monsters.  Definitely good to have a Paladin on our side!

We’re trying to make our meals a bit more regular–and a bit more at home.  I am able to cook some times…and when I do, only that meal is assured because a second cooking is still beyond my ability to do.  But we are trying to impose the “accommodate the reality of our life” requirements onto eating–and making sure that we eat as healthfully as possible.  And to make only what we can eat within that day–or the next day at most.  No huge pots of chili, no enormous amounts of anything.  We both prefer variety too much and I’m really bad about not eating leftovers.  Not a conscious thing, just forget that we’ve got them and go on to make something else.  So we’re adapting to the European model of shopping almost daily and only having the meat and fresh foods in the house that we intend to eat within 24-48 hours.  (More or less, depending on the reality of our health on any given day.)

Not much from the granddaughter front, haven’t spoken to my daughter lately.  (According to FB, she’s been sick and chicken soup really only tastes good when you’re sick.)  My daughter-in-law, however, does update on the Froggy.  Turns out that what they thought was him saying “da da da” was actually SINGING Beethoven’s Fifth Symphony–“da da da DA! da da da DA!”.  And then he changed it up for the Imperial March from Star Wars…you know, when Darth Vader is around.  The last bit of update we got from her was that she asked him if he was ready for a nap and he blew a raspberry and grinned.  As she says, “Great.  A smart ass already.  I am doomed.”  I’m just surprised it took her this long to figure it out–since he was doing the eyebrow raise when he was here in December.

The lawyer spoke with us at great length–2 hours for the first consult!  And asked if I was seeing a psychologist or counselor.  Ya know, with everything else that’s going it, it hadn’t really occurred to us that I probably should be.  So Hubby is going to find out if the health insurance will cover me for mental health and then find out if HIS counselor’s business associate (and husband) would take me as a client.  Updates on that when and if it happens.  Should be interesting because I’m the person that when they say to think outside the box, goes, “Box?  What box?  Nobody told me there was a box!”.  I suspect that if it does work out, it will be beneficial.

I am more aware that the weather has greater impact on my general feelings than I had thought.  We get several storm fronts move through and I’m a mess, having to take extra Vicodin.  Yay, I’m a human barometer.  And Mold Detector.  Not exactly things that I can get paid money for–and even if I did, the pain they cause is not worth the income they’d generate, haha.

Still moving things around in the house, still slowly emptying boxes out and trying to get things put into some order.  Gonna take the dresser I’ve had in my closet and in use for underclothes, socks and some shirts…empty the drawers and put the clothes into the wire basket stack.  Put the dresser across the end of my desk and the bookcase that backs up against it, use the dresser for some real storage.

I am also going to go through my closet and pack up the work clothes that I will not (ever) need (again).  I’m going to have my clothes accommodate the reality of my life–caftans and soft dresses, things I can pull off and on easily; leggings and large tops, things I can layer for winter but still wear in the hot seasons.  My feet are not as consistently sausage-sized swollen, so *maybe*,  just maybe, I’ll be able to wear my beloved heels.   Instead of the damned flats which are all I’ve been wearing for about 6 months now.  Sigh.

So nothing major, in either good or bad direction, to report.  Doing the same normal things, still seeing my doctors more than my friends…at least the driving in this area is lovely, considering how many miles we put on the vehicle.  Getting slowly better, to a more liveable level but having to deal with the idea that I may never be what I was just 2 or 3 years ago–and as I look back, I realize that I was already slowing down and having to make more accommodations even then.  So I’ll never be a rock star…but I’m okay with that because even with the limitations of fibro, I am finding new things to do, new gifts to offer.  And life, as it is wont to do, goes on.


Making a Difference

So things have happened since we last talked.

I saw my physician and he has changed my meds up a little.  Increased the Cymbalta and instead of Xanax, I am now on Klonipine.  Been taking them for 4 days and there is an appreciable difference already.  The pain is decreasing to very bearable limits, only coming back as I tire.  He also diagnosed plantar fasciitis.  Basically the fat pad on the heel thins and spreads out as we get older…and it becomes painful.  Heel cups (with gel soles) are a godsend.  Walking (foot) pain-free for the first time in months.  Means I need to find a pair of shoes to wear only in the house as I have gone bare foot a lot more than I wear shoes…and slippers will not support sufficiently.

The Cymbalta does take time to build up, but in only 4 days I have already had a serious improvement in my mood.  (Since it’s used to fight depression.)  I feel better than I have….well, since I can remember.  At least a year and maybe longer.  I have also made the conscious choice to stop letting the negativity overwhelm me.  Yes, we’re in a bad spot financially.  Yes, we’re both ill but we are getting better.  Yes, we are both being recommended to try for SSDI (Social Security Disability) so yes, we are both considered to be prime candidates for permanent disability (not something you really want to win.)  But I had made the mistake of looking beyond this moment and fearing what I perceived as being possible.

I should have known better and I am ashamed to realize that I let go of all I had learned over the past 10 years so easily.  I fought this battle before and won it but apparently the victory was not as enduring as I had thought.  I identify as a Tibetan Zen Buddhist.  Zen.  You know, the Zen moment.  This moment, now.  This moment, right here.  That’s all we can be sure of.  It is what we are experiencing and can identify, acknowledge and know is true.  It’s the only thing we can know is true with absolute surety–which is why part of my spiritual practice is to constantly verify my truths.  And I somehow forgot this.  I allowed past conceptions and future anticipations to overshadow the reality of this moment, this now.  In so doing, I missed the now–the fact that I am getting better, slowly–but better.  Better than I have been for a long time, which is a major accomplishment.

I recognize the human fact that I may very well have to keep on fighting this battle and I am grateful for the help the right meds, in the right doses, are giving me.  Depression creates its own chemical template in your mind and you actually need the antidepressant medications to help reset the brain to its normal, not depressed state.  Force of will is not sufficient and there is no embarrassment in asking for that help if you need it.  (As an aside: this is true of all mental diseases; they are chemical insufficiency or excess and medications are needed to regulate them and help the person so afflicted live a more normal life.  JUST LIKE a diabetic needs insulin or a hypertensive person needs high blood pressure medicine.  No shame, no need to hide it or lie about it.)

Today was the first day that I really felt good for ever so long.  We got up early and went to the chiropractor to get folded, spindled and otherwise mutilated.  Picked up our mail from the post box and had a bite to eat at Roy Rogers.  Decent breakfast at a cheap price.  Then off to the bank to deposit our sole form of income, my short term disability check…sigh.  Then we drove up to Chantilly to go to the Korean supermarket and get our hair cut.  Yes, that’s what I said.  It’s called Lotte Plaza and it really is a supermarket.  You can also get siding for your house, clothes, a massage, jewelry and get a hair cut–or color, perm and so on.  Both the beloved and I had our hairs cut and we look a little less shaggy which also helps with feeling better generally.

Then shopping…getting perishables, meat and some specific items not available anywhere else.  We love to shop there because they have the best selection of the specialty items we use in ethnic cooking.  I am learning how to do Punjabi (think Indian, but from the area near Pakistan, so it’s a “dialect” of Indian food) and we get all the (wonderful!) spices like Garam Masala, green cardomom, cumin seed and such there.  We also get shrimp–$6 per pound, 25-30 count.  (Heads off because you can buy WHOLE shrimp there if you choose.  I do not.)  They also carry Halal beef–if you cannot find or will not spend the money on pastured/grass-fed (and finished) beef, Halal is another option.  The animal is tended and butchered according to the Jewish/Muslim law; it’s much more humane, the animal is essentially thanked for the sacrifice of its life before it is thoughtfully and carefully killed.  The meat is handled a little differently–and it is my understanding that the quality of life for these animals is also more like grass fed (and may actually be)…so the meat is very flavorful.  And at Lotte, it is not expensive.  We also got ground pork, $3/pound and some nice little pork short ribs (also $3/pound) that I am going to cut into their individual parts and marinate in a Chinese style sauce before broiling them.  (We don’t have a grill or I would sacrifice them to the BBQ gods.)

Then it was time to head home, which was good because it’s been such a busy week and the day was long and busy on top of that, so I was tiring out.  But I still feel good emotionally.  My body is TIRED, not wrung out or feeling beat up.  The pain levels are a little up from where they were this morning (when I could actually “sink the chi” –start with your hands at your sides and then lift them up in an arc over your head, then lower your hands straight down in front of you — which has been so painful for me for so long I am surprised I remembered how to do it) but not unbearable.  A single Vicodin will deal with that and in a while, I will go off to bed with the nighttime meds and sleep.

Our friend is coming over tomorrow with his new dog so it will be another day of activity–and of a pleasant sort, which always makes things go well.

The clouds are rolling away and the sky is clearing up to show me the majesty of the sunset and the mystery of the stars in the black inky darkness, followed by the sunrise and the glorious blueness of a clear day.

Or as James Brown would have sung, “I feel GOOD….I knew that I would…I FEEEEL GOOD!”.


Having a Bad Day and Planning for the Future

So today is NOT a good day, speaking from this moment in my relationship with fibromyalgia.  Some days, I hardly know I’ve got this disease.  Some days, I hardly know I’ve got any other life except for this disease.  Without looking for pity, not even really asking for sympathy, I can tell you as just pure information that today, I hurt.  It’s what we refer to as an “Indiana Jones” kind of day–so much hurts that you can’t locate a spot that doesn’t.  I’ve taken my meds, am using my TENS unit and have analgesic topical patches on my hands.  I am also wearing the wrist braces that seem to give the best support and make my hands feel better.  I’m not sure why I have so much pain, but here I am, with it.

Moving is to be avoided and I’ve been occupying myself with computer activities…and I’m bored.  But I can’t think of anything else to do that won’t hurt more than the simple clicking on a mouse.  Even typing this causes pain, but I’m dealing with it because I want to share my thoughts with you.

I’ve got an appointment next week with my doctor to see about changing up my medications because frankly, I’ve reached a plateau in my progress-and in some cases, even feel like I’m slipping back into the bad part.  I’ve been on Lasix to reduce/remove the swelling in my hands and feet.  I go to the bathroom like a race horse so it’s pulling water out of me but the feet are still fat and the hands are too–which makes them hurt more because they are swollen without the extra skin and space that feet and ankles have to hold excess water.  The Cymbalta seems to be helping with the pain, but it gives me dry mouth something terrible and I really would prefer not to increase it if I’m going to have that particular side effect increase along with it.

I am really struggling with the conflicting feelings I have about our next course of action, which is to retain the services of an attorney that specializes in disability claims and see about getting SSDI (Social Security Disability Insurance)–which is essentially declaring me permanently disabled and I’d get a check from the government and my health insurance would be Medicaid.  I don’t want to be disabled.  But I cannot return to any meaningful job within my skill sets–I cannot do anything productive for 8 hours straight.  Even my doing stuff around the house is done in 1/2 hour or 1 hour spurts, with generous rest time along the way.  And I don’t see that changing for months, perhaps years–and perhaps never.  The way I am now could very well be just the way my life will be for the rest of my time on this planet.

That’s a thought that makes me almost despondent.  This is not a life with any real, consistent quality to it.  Yes, there are good days, but even those have limitations that I did not have 2 years ago.

<Interrupted writing because husband insisted I take a nap.  It’s now 4 hours later.  He says I slept through at least 6 iterations of the alarm going off.  Yay for the snooze button.  I do feel a little better.>

I cannot stand the thought of living like this the next 30 to 40 years like this.  My family has good genes for long lives and it’s entirely possible that I could live to be 90 or so.  But as beloved pointed out to me, fibro is being actively researched, so new meds will be coming out all the time.  If my doctor thinks that I would benefit from being part of the experimental group for a new one, I’m sure he’d throw my name in the hat.  I wonder if he would stay in practice for me until I am dead…he’s only about 10 years younger than I am, so it could be interesting.  I doubt that he’d work that long.  That means getting a new doctor, some young whippersnapper…sigh.

I fully and frankly admit that the thought of never having to work again but having money coming in is…attractive.  But I’d prefer to win the lottery instead of being permanently disabled.  Because the problem with disability means that all the free time I’d have–would be spent quite differently than if I had the Mega Millions to play with.  What’s the point of endless free time if you spend most of it in pain?  Or at least, physically limited in what you can do with it.  An SSDI check means that any chance for a career in catering, which I was sort of working towards, is gone.  It means a lifetime of austerity because the checks won’t be that big; food stamps will probably become a way of life.  My healthcare costs will go down, fer sure–but I have to go to doctors who will accept Medicaid which may not mean (shall we say) the highest quality care possible?  I am on some “third tier” meds with no generic available.  Will I still be able to get them or will I have to settle for some other medication that doesn’t work as well?  Which would further degrade the quality of life.

And yet I don’t really see any other option (other than winning the lottery) so it’s something I need to get used to.  It may not be that bad, but it won’t be the life I had hoped for.  So I have to wonder what lesson is involved in this and what I am to learn–and what I will be doing instead of what I thought I’d be doing.  This requires almost as great a shift in my thinking as when I got divorced, making it another life-altering event.  Even if we can get all my symptoms under control, I cannot return to work in the near future.  Certainly not within the next 6 months, maybe not even for several years.  I see no end to the limitations I currently have–and the longer I am out of work, the less likely the chance of returning.  Who wants to hire someone with the gap of employment I already have, considering the reason for it?  (I haven’t worked since the middle of January.)

So let’s say I do follow the path to SSDI.  What do I then do with my days?  It certainly frees me up to finish (finally!) the murder mystery I started 7 or 8 years ago.  And lets me write the second book I’ve already started.  It has me available for the ministering I can/want to do.  I don’t have to be mobile to be a listening ear, a shoulder to cry on…  If my kids do move to live in this general area, I am available to see them at any time–and once the grandkids are out of the toddler phase, I can babysit on the “good” days.

And if my husband is also on SSDI–we won’t have a lot of money, but we’ll have lots of time and each other.  That could be the best thing that’s happened to us.  Imagine endless amounts of time with your best friend, who happens to be your lover and soul mate.  It would be wonderful.  Even worth the pain that makes the situation in the first place.

And thus I grapple with the reality of life as it is.  I have limitations, but who doesn’t?  If I can really get the pain under control, most days should be “not so bad” and therefore, bearable.  I have lived with pain for so long, like back since high school,  that I can’t imagine a day without it.  And so a certain amount is “normal” and I don’t particularly notice it because I’ve been ignoring it forever.  If I cannot return to work (as opposed to “will not”), then I need to turn my attention to the things that I can do.  Even if typing gets difficult, there are word recognition programs I can use to continue the writing I have long wanted to accomplish.  “IAO”, says beloved–“Improvise Adapt Overcome”.  Seems like a good way to deal with a disease that tries to limit me.  Oh I won’t learn how to tango or do a lot of wood carving, but life is not over.

The life I had is over, but that is true for all of us, at any given point of change.  There is a new life, a new way of living.  Pain may be a semi-constant companion, but it’s not the ruler of my life.  I will medicate, learn how to do old tasks in new ways that don’t increase the pain, and generally go on with my life in this new way.  It will be interesting to see what new abundance and blessings will come my way, and I am sure of those arriving.

The bad days serve to remind me that the good days do indeed exist because we know a thing by its opposite.  And I am getting more and more in tune with my body, which is probably part of this lesson.  I am also learning to appreciate the small moments–like spending the other day with my daughter, granddaughter and daughter’s significant other, doing nothing in particular but being together.  Personal interactions are taking on a new importance because the opportunities for them are more limited.  I am also getting some strong lessons in the gift of receiving gracefully–a friend took me to the store and paid for a cart of groceries that we needed and I am indeed grateful.  Having to go to Social Services and request all that we are eligible for as that time occurs will also be a lesson in humility and overcoming the false shame of being needy.  I say false because there is no shame in needing, only in feeling that somehow you are above that level of living…even if you’re not.  O Lord it’s hard to humble…

So there it is, just information, not a plea for sympathy or pity, not even whining, I hope.  Just trying to share all the aspects of fibro and letting you know, if you also suffer from it, that other people have bad days, too.  That sometimes beating the disease back is not possible and you have to look at all the other options, even if it means letting the government take care of you.  That learning to receive is a lesson that many of us need and some of us may actually learn.  That having this disease may end up being the very best thing to happen to you because it frees you up to a life that you had not imagined which may be fuller and more blessed than the one you were planning on.  It all depends on your point of view.


How Should I Spend a Gift of Time?

It’s week 5 (could be week 6, I’ve lost count) of being home and feeling dreadful.  I don’t mean to sound like a whiner, but frankly, this constant pain is getting to be a drag.  The new fibromyalgia medicine seems to be helping with the rest of it–my general mood is better–but even with all the pain meds I’m on, I hurt.

It’s getting to be truly annoying, to feel good emotionally and mentally, want to do things and then (re-)discover that my physical self has gone on vacation to the 9 circles of Hell.  I’ve got nothing to do because nothing is what I can do.  I am very thankful that I can go to the bathroom by myself and fix food (although even that has to be carefully thought through and done in little steps).  Just taking a shower wipes out my ability to do anything more than dry off and sit down again.

The one thing that I have lots of is time.  Endless amounts of time.  I’ve watched the first 6 of the Harry Potter movies and spent an inordinate amount of time playing useless flash-based games on Facebook.  If I was getting paid for killing gloom creatures, solving hidden picture puzzles and domating the world, I’d be rich at this point.  I also have scads of time to think, to ponder, and to meditate upon my current situation.

Thank the gods for friends.  SC came over on Monday and has graciously volunteered to come back on Friday.  Need I tell you that I am counting the hours until then?  We had a lovely day, chatting and sharing the time together.  And we also shared Lester the duck, for whom my piscaterian (Spelling?  A vegetarian who also eats fish and seafood)…had one of her rare “meat lapses”.  We are going to have shrimp on Friday and I know how I want it cooked.  I’m also thinking we can put a pot of rice on to cook earlier in the day so that we can have the GABA rice Paul and I love.  (Google: GABA rice; read it and you’ll want to have it as your main type of rice as well as we do.)

But I don’t expect other people to entertain me while I am out of work–and more than that, I don’t expect them to put up with me.  I am not exactly in the best of moods these days.  I try to not let the pain overwhelm my interactions with other people–and sometimes, it’s not the pain that gets me, it’s the sudden and dramatic drop in energy.  I go from be a social butterfly (so to speak) to being a weepy, pathetic child, who wants nothing more than to crawl into bed with her Puppy and snuggle up to him as she falls asleep.  As I have mentioned before, I resent this very much.

So here I am, with lots of time.  What is the purpose of this time for me?  Why have I been given this time, and what am I supposed to do with it?  Given the physical limitations, what mental or spiritual work should I be doing, instead of spending hours online?  I have begun taking naps.  One of the side effects of the fibro medicine is a severe attack of the sleepies, and rather than fight it, I give in and sleep for a couple of hours.  The dreams are interesting and I only remember them first thing as I wake up…they fade through the day and vanish in the next nap.

I am finding opportunities to minister that would not have occurred if I was at work.  Ministry is really my main job, even though I don’t get paid for it.  I am healer and those who are ill or in pain–but more usually in the mind or soul than physically ill–tend to seek me out.  I ask the questions they need to hear, whether I hear the answers or not.  I offer what I can from my life experiences and try to help them find where they are supposed to be.  There is no more sacred duty than this and being housebound means that I really do focus on the specific task without the distraction of “normal” daily living.

This gift of time also allows me to contemplate my house.  Still looks like 10 pounds of shit in a 5 pound bag–but it’s improved from the original 20 pounds of shit…  We are starting to get the furniture into the arrangement we’ve got in mind for how it’s all supposed to fit in here.  I’ve been moved from one side of the room to the other and now I can see my beloved on his computer instead of trying to talk over a wall of furniture to the back of his head.  In my head, I’m sorting out the things I want to get rid of and once I can move around again, will have a more solid plan of action for that sorting which will hopefully let me get rid of more things.

Like the other gifts the Universe has given me, I am overwhelmed with the abundance…I can only hope that I will use the gift and use the time to the best possible effect.  And I want to learn the lesson that I am being given, both with the time and with the pain.

The Zen of Fibromyalgia

I have fibromyalgia.  As near as I can tell, I have had it most of my life, since about high school.  It was an occasional visitor through the years, mimicking arthritis or a headache or the general “blahs”.  I would not have been diagnosed with it as fibro back then.  But now that I have the actual, “doctor says it is so” diganosis, it has become my constant companion.  And it’s not a very pleasant or polite companion.  Sort of like having a drunk uncle or a demented grandparent that you are responsible for, who constantly embarasses you in front of your friends and coworkers…and yet you can’t send them away to live somewhere else.

Fibromyalgia is diagnosed through a list of symptoms and testing pressure points on your body.  The list has 18 specific items and if you have 11 of them, you are deemed to have the disease.  I have all 18.  Well, okay, since my red snows have stopped, I no longer get menstrual cramps.  So I have 17 out of 18.  The most common sign is pain.  Pain without apparent cause, pain that exists without a visible trigger such as an accident or walking into the edge of a piece of furniture.

Pain has been a lifelong burden for me.  I spent time and money prior to my diagnosis trying to alleviate the pain without success.  I thank the gods that my primary care physician believes in pain management and has given me three prescriptions for different types of pain relief.  One of them is a narcotic and everyone is concerned that I will become addicted to them.  I keep telling them that I am NOT addicted to the pill; I am addicted to no pain.  Frankly, at this point in time, even this is not stopping the pain.  It takes the edge off and keeps me from having screaming levels of pain, but there are still aches and twinges.

I don’t know if it is my age, the fact that we lived for a year in an apartment that had black mold (and I am highly allergic and very susceptible (like a canary in a coal mine, says my husband) which means it affects me badly), or just coincidence, but the fibro has not just flared, but reared its head up and has taken over my life.  I am out of work more often than I am at work; I have almost no social life and in fact, haven’t gone out of the house for more than a meal or a doctor’s appointment in about a month.

I am angry with my fibro.  I resent that it has robbed me of my normal routine and any meaningful activities.  It irks me that just lifting my drinking glass (weight: 24 ounces of liquid and whatever the cup itself weighs) hurts my hands, wrists and arms.  I despise that fact that I walk like a very old lady, shuffling and feeling pain in every step.  I can’t crochet or knit more than a row or two before I have to rest due to pain.  I can’t do the puzzles I enjoy because between the pain and all the pain pills (and the new fibro med that I am getting acclimated to), I am so fuzzy brained as to be…stupid.  I cry at the least thing without any real cause for the tears.

I am not a good invalid.  I do not lounge gracefully on my chaise.  I do not ask for a refill of water demurely and with a sad but gentle smile.  I do not bear the indignity of incapcitating illness (like that alliteration?) with anything approaching Hemingway’s “grace under pressure”.  I am angry.

And yet…I realize that there is a deep and necessary lesson to be learned from this.  I have endless time to meditate and to think.  (Since I do Zen, where meditation is to clear the mind of all thought and exist only in the moment, meditation and thought are two different things.)  Physical limitations open doors to spiritual and mental expansion.  Even feeling fuzzy headed as far as logic and puzzle-solving still gives me the opportunity to think in a sort of free association, going down a river sort of way.

I can take the energy of my anger and channel it into an exploration of the mind and soul.  “Be still and know that thou are god” is an attainable task for me, since I do a lot of sitting still.  I can question my anger, dissect and analyze it so that I can let it go and move on to other things.  I can open myself to the gift of other people’s generosity.  I am blessed with friends who will take care of my chores because I cannot–and I am learning how to let go of being the one who does them.  I have such a sense of responsibility, it’s very hard to sit still and let someone else do what I think I should be doing.  It’s also nearly impossible to keep my mouth shut and let them do it their way, instead of bossing them and insisting on having it done MY way.  (Side note: the search for clean kitchen items is a fun romp through the cupboards, looking for whatever it is I need.)

Having limited energy means really prioritizing tasks because there is no extra to waste on “squirrels”–our way of saying something that catches your attention like a squirrel gets a dog or cat’s attention…even if they can’t get outside to catch it–an unnecessary, unimportant task of any sort.  You’d be surprised at what can be left alone and doesn’t need all the energy we usually pour into it.  Limited energy is like limited funds…you spend it much more wisely than if you had endless amounts.

I am discovering that the fibromyalgia is actually a gift.  It has given me time (lots of it!): time to think, time to look at my life and time to learn lessons I need that could not be absorbed any other way.  The pain itself has sharpened my awareness of my body; it’s taught me how to identify and quantify  the pain and to appreciate the relief from pain that my pills, the chiropractor and massage therapy give me.  I am grateful for the diagnosis because now years of symptoms have a name and was not me just being lazy or malingering.  The addition of a cane to my daily  attire serves as a real test of other people’s courtesy and help–which comes often and from such a variety of types of people that my hope in the human race is refreshed.  Having to ride through the stores in a handicap cart is an interesting study of people’s attitudes towards the handicapped.  Fortunately, most people are pleasant and compassionate, offering help without having to be asked.  And my lesson in that is accepting this kindness…having done nothing in particular to deserve it.

So far, I would say that I have learned this: that a debilitating, chronic disease can either destroy your soul or uplift it, depending on how you choose to deal with it.  Being in constant pain makes it easy to be nasty, demanding, rude, and just plain not nice to be around.  But you don’t have to give in to that.  I’m not saying that you have to be some kind of saint, smiling through the pain…but it’s easier to deal with the pain when you’re not one–because people are more willing to help you when you are kind, which helps you feel better, so you can be more pleasant, so more help will be given…a cycle of kindness all around.  Seems like a much better way to live than the cycle of pain, your nastiness and other’s avoidance of the nasty sick person.

And the gift of time is priceless…so use it wisely.  I am trying to!