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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

UPDATE:

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

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I Found It!

So once again, I am not blogging as often as I want to.  Time slips past me like quicksilver and I lose track of it like it doesn’t matter.  And it doesn’t, not so much.  Not like I have to be anywhere.

Let’s see…what has been happening?  Late April (or early May, I don’t remember), I got my packet from the Veteran’s Administration (VA), telling me I had been accepted for health benefits.  These should be lifelong and should forever take care of the health insurance question.  It does mean that I have to go to a VA facility for healthcare, but I am so okay with that.  I called and set up my first appointment, getting their first available appointment: 17 July.  Think they’re a little backed up?  Oh well.

It’s going to be an interesting appointment.  First off, I have to find out if I am actually eligible for some level of disability from the VA.  Oh, not that I got some injury while in the AF but for a much more convoluted and fascinating reason.  You see, I lived in Saigon for the Tet Offensive of 1968.  My father has disability from the VA because he was exposed to Agent Orange.  By association, and by living in Saigon at that time, it is entirely possible that I was also exposed, and therefore may have health issues that would be caused by it.

(Side note: the general scientific consensus is that Agent Orange, and Round Up, the weed killer that is also from Monsanto and contains one half of the ingredients of Agent Orange, cause a lot of diseases, including autoimmune diseases.  Fibromyalgia has just been characterized as autoimmune rather than neurological.  I think I have a decent case for disability…)

So we will have to decide if I am eligible for any disability, doing whatever testing is required to substantiate that.  Which leads to my second question: would the VA pay for my fibromyalgia blood test?  It lets them make the actual diagnosis for themselves.  It would give me concrete evidence to submit to the SSA for my SSDI appeal and it would change my LTD from 2 years’ payout for a “self diagnoses disease” to a 5 year pay out for a proven and doctor/lab verified disease.  And if somehow the test is negative, then we can begin trying to find out what else it could be, because I am really, really sick with something.

And in the meantime, as we’re doing all this testing, I want to keep all the medicines I’m on, so will the VA write scripts for all of my meds?  It’s only 3 pain meds and 2 fibro meds…

(Insert explanation: Beloved actually forked out the money for a “no insurance” doctor visit for me.  The doctor doubled down on the Vicodin, going from a 5 mg dose to 10 mg and added Neurontin, which makes a huge difference.  Pfizer finally agreed to give me the Lyrica for free as part of their “help the community and those who need it” program.  One problem: I had been taking it as 2 150 mg tablets, one in the morning, one in the evening.  They sent me 300 mg tablets, that I take at night.  Problem with that?  Apparently taken in the large single dose, it makes me…um…high as a kite.  So my choices come down to this: Insufficient pain management and a missing fibro med making me unable to function, OR pain management and both fibro meds and I’m in better shape emotionally and mentally, but am still essentially unable to function in a meaningful way.  Guess which I have chosen?)

I will also be asking the VA about dental work, since I need that done, too.  I’m not going to abuse these new benefits, but I am going to get all that I can and am entitled to have.  And I don’t have to go far for my appointment–it’s about 25 miles from me, which is closer than our PCP is.  Oh well.

Beloved was once again denied LTD from his insurance company, with only legal recourse at this point and we lack the funds to file a claim in court.  So it was a possible source of income that won’t be incoming and we’re adjusting for that.  Now let’s talk about some of the other adjusting we’re doing based on actual and potential income.

We got to talking about our costs, the money we have or will have, the money we can expect to have for the rest of our lives and how to best live on that extremely fixed income.  We acknowledged that living here in NoVA is extremely expensive and that we are not going to be able to afford this apartment for very long if last year’s increase is any indication–our rent went up $25 last lease signing.  That’s not a lot, true…but in 4 years, that makes an additional $100 and trust me when I tell you that our income is NOT going to keep up with that–and the concurrent increases in the cost of everything.

So Beloved said to me, “Okay, we’re retiring.  That’s essentially what this is.  We don’t go to work any more and we’re on a fixed income.  We’re retirees.”  I agreed.  He continued.  “So if we could live anywhere in the entire US, where would we go?  Hawaii is out as is Alaska…both of them too far from anyone we know and AK is TOO cold for you.  So what does that leave us?”

And we looked, discarding this state or area by virtue of its climate–both meteorological and political.  (Which included VA for the political reasons.)  And once we had done that, he says, “That pretty much leaves us with the West Coast.”  Yup.  We also agreed that SoCal was OUT of any discussion, but he asked me, “Where would we go?”

Well, WA is not bad politically, but a little cold for me.  And OR didn’t have a lot to commend it to us.  I’m sure that the people who live there (all 12 of them, HAHA!) or the other people who might want to move there think it’s great, but we didn’t find anything that made us go WOO HOO.

So Beloved says to me, “Ok, we’re looking at northern California.  What is there, which city seems like the place we’d want to live?”  And I went, “EUREKA!”  which in Greek means, “I found it!”.  It also happens to be nearly the only city on the northern coast of CA once you get past San Francisco.  He and I looked at where it was on the map and I began to do my Internet Search-Fu to find out about it.

And everything I found?  Began to suggest more and more that it was ideal.  Short story? We’re moving to Eureka in November, come hell or high water.  Long story?  Let me tell you what I found out.

Eureka is called a city, but has a population of only 35,000 with a weekday swell to 45,000 with the commuters (whose commute averages about 15 minutes.  Anyone who lives in VA would KILL for a 15 minutes commute).
Eureka is the only deep water harbor between San Fran and Coos Bay, WA.  That means SEAFOOD.  Fresh caught, freshly available, WILD caught.  Oyster farms.  Salmon.  Tuna.  SEAFOOD.  SCORE!!!
Eureka is in Humboldt County, home of many, if not most, of the organic foods available everywhere else in the US.
Eureka has a cost of living that is between 30 and 40% cheaper than Northern Virginia.  Rents are lower, utilities are lower, food is cheaper and is not taxed.
Eureka has a public transit system that runs 6 days a week.  They also have a free “to your front door” ride available if you have documented disabilities that prevent you from walking to the bus stop, or if  you’re unable to stand for more than 15 minutes at a time.  We are, I believe, eligible for this service.
Eureka has a steady climate.  The coldest temperature ever recorded was 24 degrees; the hottest, 84.  The average temperature, year round, is 65 degrees.  There are two seasons: dry and wet.  So yes, in the “winter”, it rains.  And rains.  But there’s only 3 days per year that actually have a hard frost and almost no snowfall at all.  Part of my ongoing issues with fibro is the weather, here in NoVA.  It changes every 15 minutes or so.  And that fluctuation in barometric wreaks havoc with my joints and causes more pain on top of the fibro’s blessings of pain.  I look forward to “steady”.
Humboldt County is also home to the largest farms for medical marijuana.  Which may prove to be useful to both me and my Beloved for pain management and anxiety, in that order.

Everything I have found out about Eureka makes me more and more eager to go.  The only sadness I have at moving is leaving my friends and family behind, although I’ve asked everyone if they want to move with us!  I will probably never get to see my family again except on Skype…ditto for the friends.  But we talked about that quite seriously and have reached this conclusion: we CANNOT continue to live here, on the very edge of poverty, one car repair or major purchase needed from falling over into poverty, never to get out again because of the increasing costs in this area, while waiting for the 2-4 visits per year from the family members and friends.  Yes, costs will increase in CA, but since we start from a much lower place, we will have to time to prepare for those higher costs over a greater period of time.

Eureka has a large artistic and creative community.  I have found a wood working class for Beloved, and there are watercolor painting classes that I am interested in.  If we want to go back to college, we can–either in the community college, or in Humboldt State University.  We can go to the beach whenever we want, and even if the water’s a bit cold, I can get back into salt water.  I have missed living near water and look forward to seeing the waves crash as the sun sets on the Pacific.  It will be even better having my Beloved with me.

We intend to sell or get rid of all most all we own.  We will only take those things that are too expensive to replace once in CA, or that are irreplaceable AND wanted.  We are also traveling to CA by plane, first class.  Beloved is a large man and would require two seats in coach…so we’re allotting money to go first class and avoid all the crush that coach entails.  It also means that we can take two suitcases each, weighing up to 70 pounds.  For an additional $100 per bag, we can each take one more bag, up to 100 pounds.  That’s a grand total of 480 pounds of personal belongings that will go with us on the plane.  We also get a hot meal, bigger seats, and booze. Well, maybe not the booze, but it really doesn’t matter.  It’s a special start to a new life out West.

The opportunity for better living, better food (all organic), SEAFOOD, steady climate…means that perhaps this is the chance I need to take to end up recovering enough of my health to go back to doing some of the things I used to.  Or at least not being chained to a computer desk because I cannot do anything else.  I want to be healthy, but the conditions and our situation here are not conducive to that.  I need to go some place else, and I think I have indeed, found it.

So there we are, and even though this hurt to type it out, I wanted to let you know that things have been happening with me.  Hoping that they all turn out good!

Namaste!

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!)

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UPDATE:

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.