The Only Constancy is Change

Let’s see if I can do this more or less chronologically.

Went to see the headshrinker AND my PCP in Fredericksburg on September 11.  (Note: while I was not old enough to actually BE a hippie, I am a product of the drug era.  When I hear PCP, I immediately think about the stuff they used to lace pot with…not Primary Care Physician.)  The psychiatrist was a nice but nervous man.  We discussed my issues and he prescribed the full dose of Efexor I’d be on and refilled the clonazepam.  Still think I should (eventually) get that changed because I STILL don’t think it does that much.

My PCP walked in and it was like…a completely different doctor.  I suspect a bit of an ass reaming about the massive med changes he had made.  He was pleasant, he smiled, he LISTENED to us (this time) and expressed his anger at having his direct order to have me admitted to Richmond for psych eval “over-ridden” by “someone”.  He got to see the psych notes (apparently I was not allowed?  Or maybe they just weren’t entered before I was kicked out) and didn’t understand why I had been discharged literally within hours of getting there.  (Rather than the normal 24-48 hour evaluation period.)  That was an interesting piece of news and he also indicated that the drugs I was given in Richmond were actually prescribed by the staff psychiatrist.  So I really have NO idea who the guy in the blue scrubs that grilled me about being in their ER was.  No name, no way of filing a formal complaint.  Oh well.

So anyways, we talked with the doctor and guess what?  He ended up doing what we had asked for, 2 1/2 months prior: gave me my Vicodin, acknowledged Beloved’s wisdom in cutting my neurontin dose ummm in half of what he had prescribed.  (Beloved had told the nurse what drugs I had stopped taking, what dosages I was taking — and was told that the doctor was unhappy that he had not “consulted” with them before making those changes.  He is very smug to have been right…as he should be.)  We talked about the move, he said I can call in my next appointment in October and all was happy happy joy joy.

Well, except for this: I had gotten my fasting blood sugar test (finally) done.  The nurse called us about 2 days later to say that I had an A1C of 6.4.  Now when Beloved told me that, my first thought was “A1C?  Airman First Class?  WTF?”  But that’s the technical term for that particular blood test.  Over a 7 scored and you’re diabetic.  Anything below 6 is normal.  Between 6 and 7, you’re “pre-diabetic”.  So I am officially pre-diabetic.  No finger sticks, no insulin yet.  Just watch the diet, try to exercise.  Stuff we’re going to do anyways.  And probably a fasting blood sugar test done at least once a year, maybe twice to keep tabs on it.  Not really surprising, as geriatric onset diabetes (Type 2) runs in the family, from both sides.  And I could linger at that 6.4 for as long as the rest of my life, if I really do manage it with diet.  My grandfather, while actually diabetic, did manage his with diet.  His son, my father, has to do the multiple finger sticks and takes insulin, but is also on VA healthcare because of his exposure to Agent Orange.  So his may be worse because of that; no way to ever know.

We’re not getting a lot done in the way of actually packing or getting rid of stuff for our move.  We’ve got the suitcases and carry on luggage now–Pelican cases for anyone who knows what they are.  Look it up, for those who don’t.  Beloved’s parents are taking a lot of our furniture (they are also moving, this upcoming weekend) because they will be in a smaller place and our furniture was bought specifically to fit within a smaller apartment.  Once that is out of the house, it will be easier to go through our stuff.  Or at least that’s what we keep telling each other.  I am feeling very overwhelmed but I always do, and I HATE to move…and I do some of my best work at the last minute.

My in-laws bought me some clothes.  My mother-in-law knows that the way you dress affects the way you feel and I have not been dressing like I feel very good.  It’s a sign of illness when an animal stops grooming itself, and frankly, humans are no different.  So I found clothing that I chose specifically with an eye towards the weather in Eureka (able to be layered, sweat pants, that sort of thing) from a place called “The Woman Within”.  They have a website and they also do catalog sales.  Except for the two sweat pants / matching tops sets, everything is 100% cotton.  (Sweats are 60-40 cotton-polyester.)  I had to watch the sizes carefully as I have lost 2 inches of height somewhere along the way (degenerative arthritis in the spine will do that, you know) and now I have to shop in the “Petite” section.  Sigh.  I got 2 turtlenecks, 2 sleeveless t-shirts (shells), a v-neck, short sleeved t-shirt, 2 skirts and the aforementioned 2 sweats sets–and I don’t know how much the shipping and handling added, but the merchandise added up to just at $125.  Not bad.  If you’re looking for clothing that real women wear (not designer, let me tell you), then I’d recommend them.  Usual prices aren’t bad, and a lot of what I got was on sale for less than some of the thrift store clothing I’ve bought.

We’ve spent big portions of September either recuperating from the various hospital trips, or going to see someone’s doctor and having to recuperate from that.  We spent a great deal of today making phone calls and getting things done.  And in the course of that, we’ve had more good news in a single go than I think we’ve had in quite a while.  While I’m happy about that, remember: distress or eustress, it’s all still stress.  So it was overwhelming for both of us.

I spoke to the company that manages my LTD (Long Term Disability) benefits with some questions I have had…turns out that fibromyalgia is NOT limited by the policy that my former employer had with this company at the time of my disability.  Which means that there is no limit of just 2 years for pay out.  In fact, they can end up paying me for another 15 years, or until I turn 67 and would “retire” anyways.  WOW.  Income, steady income for the next 15 years.  As long as my primary diagnosis remains fibro (and it will, it’s not going away) and my doctor keeps me on medical treatment for it.  And that will also remain permanent, since the pain won’t go away without narcotics.  And the insurance company’s “Any Occupation” review board (as opposed the medical board that reviews the doctor’s notes) will determine whether I can work in any occupation (hence the name) besides the one I was in when I became disabled.  And since I am on narcotics (and barely drive any more), who is going to hire me?  No one, that’s who.  I will just have to be careful to have the doctor document fibro stuff every time I go see him and the fact that I am *still* not able to hold down any meaningful job due to the limitations of fibro and the meds I am on for it.

I spoke to the airline and found out how to get handicapped assistance from curb to gate (both ways) when we fly out.  Easier than I thought, and the agent I spoke to was pleasant and helpful.  Checked the airline’s website and determined that medical equipment (read: canes and CPAP machines) do NOT count as carry on luggage and will be allowed on board in addition to our bags and carry ons.  YAY!

I got an answer from the minister at the Humboldt UU fellowship, replying to the email I sent yesterday.  I explained what was going on, who we were, and so on…  Always good to have people waiting to greet you in a new place if you can and we are really looking forward to attending services there.

Beloved made his own phone calls as well.  Found out that the utility deposits in CA are not going to be completely onerous (well, except for AT&T landline/DSL which requires their money upfront) and will be on the first bill.  Found out that CA is VERY generous in Social Services (which I think we will qualify for, and with the letter from VA, may not require the year’s wait for those services to kick in).  They have SSI AND something called “SSP” which, if we are eligible, could add quite a lot to our income.  If we get both of those, we may not then qualify for CA Fresh (their version of SNAP), but hey, we’d have enough extra money to afford our food.  Also, they figure eligibility differently than VA, removing rent and utilities from the income amount–which may also then put Beloved back into being eligible for Medicaid.  THAT would be a great blessing, since we’re both a bit concerned about his lack of insurance at this time, with no coverage until Medicare kicks in NEXT August.

He also made a call to our cell phone carrier and FINALLY got the 3-4 year old SNAFU figured out and straightened out.  Got us $80 credit for a line that we had tried to turn off like a year ago–but had somehow become the “primary” line and couldn’t be shut off…so we’ve been paying like $40 a month more for that line all this time.  Not as much as one could hope for, but way better than NO refund.  And part of clearing it up and getting things correct included changing his phone number–so the lucky duck already has his Eureka telephone number!  I’m mildly jealous, but not enough to merit changing MY phone number with the bazillions of people who have it and with whom I MUST stay in touch, for emotional or financial reasons.  Bad enough I’m going to have to do it eventually, and sooner rather than later.

And I actually cooked dinner for us.  It’s kind of sad that I have to admit said accomplishment is a major one for me.  I have not yet made it into the kitchen and whipped it back into shape…it’s winning the war of wills at this point.  I do have a deadline of sorts: my in-laws are also taking some of our kitchen appliances, and that means I have to wash and ready them for departure when the furniture goes.  Which means, I hope, that I will be forced to organize the modern art display of carefully stacked dishes into a real STACK of dishes, not an artistic arrangement that could be sent crashing down with just one nudge on the wrong piece.  Which, if all goes well, will then lend itself to at least being rinsed in the dishwasher (that for some reason, even though it is brand new, still does NOT actually wash the dishes clean).

We’re going to a friend’s house for their “we got married in CA and you couldn’t be there” party on Saturday.  And Sunday, if he got permission (from the Navy), my son and his family–or just the family if he didn’t–will come over for a little bit so that I can see them before we go West.  They will also be taking some things back home with them.  Jay, tell them what prizes they have won.  Well, Bob, they’ll be taking home this box of Legos!  (Most of them were mine, some of them were my son’s and he’d be glad to have them back.)  I am also going to let my daughter-in-law pick and choose through the kitchen stuff I won’t be taking…things like the really huge Tupperware bowl, crystal bowls from Germany, etc.

My daughter will be coming down one Tuesday (her normal day off) to see us before we leave.  No granddaughters, but really, we’re not set up for it and this way, we’ll all be able to talk without chasing the toddler or dealing with a crying baby.  She promises me lots of pictures and I keep poking her about getting Skype.  So that’s one area of stress that has been relieved and I’m very glad that it has.

I’m also getting polite and chatty emails from my mother–and as long as they stay that way, without politics or religion…we’ll keep talking.  Another source of stress, dismissed.

Now if the house would just empty itself and my suitcase pack things up without my actually having to do anything.  I am clenching my teeth a lot, mostly from the stress–which ends up giving me headaches.  Not helpful.  By my latest assessment, I need to: empty out my jewelry armoire, sorting out what I want to keep from what I will give away; sort my clothes into going and going to the thrift store.  AND I need to go through every box that holds my shite and sort it out: trash, give away, sell, take.  Oh gods, if I keep listing things I shall go mad.  One thing at a time, one step at a time.  It’s really all I can do.

Oh, and we bought the tickets.  So come hell or high water, clean apartment or not, with or without all that shite being done…we are leaving on November 1.  Flying first class (wowee!!) to Sacramento.  ANOTHER source of stress…gone.  And that was a major one, so I am very glad to actually have them in hand, so to speak.  And we’ve got the handicap assistance set up, so I won’t have to call the nice lady back.  That works for me.

Looks like the light at the end of the tunnel is NOT an oncoming train, but really the other end of the tunnel.  Dear gods, I hope so.  The ride has been a lot more than I bargained for, and way more than I ever wanted.  Or as the meme I saw today said, “I don’t just ride the crazy train, I motherfucking drive it!”.

Our life has been on hold, for health reasons, for money reasons, for time reasons.  And frankly, it’s still on hold until November 1, when I step off the plane in CA.  Or maybe Nov 2, when we actually get into Eureka and can put our toes into the Pacific Ocean.  I am looking forward to that life very much and I will do whatever it takes to get there.  Now if I could just figure out some way to take all our friends and family with us, it would be perfect…but that’s just my “how life is supposed to be” talking, and that is apparently what I’m supposed to be letting go of now.  (Having learned about letting go of things, and of words…)

I am cautiously optimistic, preferring to keep some little piece of hesitancy just in case (because “just in case” has happened way too many times in the past few years to be ignored).  But I will acknowledge that things in general seem to be…going in a direction that leads directly West.  Which is where we want to be.

Namaste!

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Family, Illness, Fear and Loathing in My Own Life, Act II

If you read the the first part,  you know that Beloved was in the hospital; to sum up, he had his gall bladder and the boulder inside of it removed.  He also had a slipped lapband, and the good hospital quickly took care of that by removing the saline that allows them to adjust the opening between the top of the stomach and the lapband, ergo the bottom of the stomach.  So he was there from Sunday night (very early Monday morning) until Friday afternoon.  And most of that, say from Tuesday evening or Wednesday morning until his discharge was recovery and making sure his stomach was back online after not eating for almost a month.

I was not able to stay with him in the hospital, but a friend and then his parents took me over to see him several days of the 5 days he was in.  It was a joy to bring him home on my birthday–best present I ever had.  But I also have to tell you that this was the best birthday I’ve had in a long time.  His parents took me out to Eggspectations for a wonderful breakfast (and a rather large Bloody Mary) and gave me gifts of US mint green and the size was … surprising and very generous.  Beloved had primed the nurses, so when I walked in, I had several people wish me “Happy Birthday” and that was surprising and pleasing to me as well.

And somehow, this man who was in the hospital still managed to shop for my birthday.  (Thanks to the Interwebs in the hospital).  I am now the proud owner of a couple of different kinds of titanium utensils and a titanium cup.  These go with my spork and straw.  This all comes from Snow Peak, and is really made for camping–but works for us very well.

Now for the darker side of what began to happen.  The day before he came back from the hospital, as I was waiting for the in-laws to pick me up, I checked the mail…to find the 2nd rejection from SSA for permanent disability.  I made the decision not to tell Beloved because I did not want him to have to worry about it.  (This, by the way, was a big mistake.)

So he came home and all should be lovely, right?  Well, distress or eustress, it’s all still stress…and I’d been on a rollercoaster of emotions that makes any of the supercoasters look like a kiddie coaster.  To put it bluntly, I began to exhibit erratic and irrational behavior, accompanied by stumbling, falling, vertigo, anxiety and several other possible side effects from my medication.  I also had what the professionals refer to as “emotional lability”, which means inappropriate outbursts, possibly hysterical outbursts of laughing or crying.  Short term memory loss was another unpleasant side effect, especially considering how much I have prided myself on being able to remember things.

The most (or least) amusing side effect was this most amazing British accent I suddenly could not shake.  And as Beloved would tell you…it wasn’t just the accent.  I used the British syntax (“my husband is in hospital” rather than the American, “my husband is in THE hospital”) and British slang.  Now, in my own defense, when I lived overseas (1966 – 1976) most of the people to whom I spoke talked to me in the Queen’s English, not in ‘Murican.  AND I have seen thousands of hours of Monthy Python’s Flying Circus and Benny Hill.  I also (when speaking normally) speak very clearly and enunciate my words; I have some British words in my vocabulary (“sshedule” instead of “skedule” or “labORatory” instead of “labruhtory”).  So a British accent is particularly easy for me to slip into, even without being doolalley.

I pointed out that it could have been worse: I also had taken 5 years of French et je parle en francais un peu aussi.  Or I could have had a German or Russian accent.  Can you imagine me, going into the US Veterans’ medical facility with one of those accents?  Not cool.  No, I just sounded like Russell Brand.  And I used the word “fucking” A LOT.  Except in the British accent, it is somehow simultaneously more intense but less offensive, I think.  “Fuhhhhh-KING”.

So he calls my nurse in Fredericksburg and they confab…result: take her to MaGuire Medical Center in Richmond, where they can run a FULL panel of tests, blood pee and otherwise.  Neither of us were thinking very clearly, but we did the best we could.  We gathered up clothes and books for Beloved, because I fully anticipated being “kept” in the hospital.  I called around, looking for a friend’s house for him to have a bed at nights because we couldn’t afford a hotel, for him to drive back and forth, and had no idea what the facilities were like in my room for family members.  The upside to that was that I got back in touch with my aunt and uncle after not seeing (or speaking, really) for about 8 years.  “People have lives!” is what my aunt told me when I mentioned this–and I will say, we went right back into interacting as if NO time had elapsed, so that part was very good.

We had to go north to Warrenton to pick up his medications so that he would have an adequate supply while we were gone, however long we were gone.  So it was late before we got out of town…we waited until my aunt and uncle returned from their dinner engagement to go to their house so that they could meet my husband (first in my family other than my kids to do so) and we talked, probably more than we should have, but it was all necessary.  I was provided with a moment of pure enlightenment from my aunt which made the entire trip worthwhile.  Sort of.

So we finally head over to MaGuire…and the gate is locked.  We have to drive around in the dark, in the rain, without a good idea of where we were going…in a not so great neighborhood.  Finally found the main gate on the OTHER side of the facility grounds and headed for the ER–the only department opened at that time of night.

I cannot bring myself to try and tell you all that happened.  But let’s see if I can adequately describe the most outstanding parts.  The man who came to talk to me did not introduce himself, was not wearing an ID.  Found out later he was, indeed, The Doctor.  He kept asking me what I was in the ER and when I told him it was because no other department was open, looked at me as if I had walked in covered in shit.  I award him the “Pain in the Ass Award” because between the Hardees I had eaten earlier (BIG BIG MISTAKE) and the stress, my IBD kicked in.  FULL FORCE.  I made trips to the little girls about every 20-30 minutes.

Back to the fun: they took 4-5 vials of blood, x-rayed my chest (I do NOT have tuberculosis) and CT scanned my head–found nothing, as the joke goes.  Did a urinalysis, a complete drug scan (I have a new list of things to try next time I want to do recreational drugs) and the end result was I still have a slightly elevated blood sugar count.  And they got all this done in (drum roll) 3 1/2 hours.  Including an hour’s talking to the student intern psychiatrist, who, while completely sympathetic, had apparently been sent down from the psych ward to “practice” taking a history because NONE of the copious notes we watched her take were included in the wad of discharge papers they gave me.

I went there, terrified of being crazy and getting locked up.  Being kicked to the curb with a new script or two was….anticlimactic.  I was almost disappointed.  And Beloved was so angry and insistent, we drove back home, getting into Bealeton about 8.  Almost 24 hours without sleep, with bad food, with the Tijuana Trots thrown in….BUT I was HOME, with MY Beloved.  Took the necessary meds and tried to sleep.  I managed only 1-3 hour spurts of sleep until Monday night–so for 4 days, I was sleeping a lot but not all at once.  I didn’t eat again until Monday lunch time–this is a fuck all of a diet; I dropped about 5 pounds in 5 days.  I carefully and under the Beloved’s very watchful eye, took a Vicodin when I needed it…and broke a cycle of pain I had been in for over 2 months.

And the British accent went away, mostly.  It crops up when I am feeling anxiety or stress.  I have an appointment with the psychiatrist on the 11th, but of more worth, I think, is my appointment with the psychologist on the 6th.  We’ve had such an incredible amount of stress, both good things and bad, that it would not be odd for me to have an anxiety disorder.  Having my main support go into the hospital, knowing that the BAD hospital could have killed him (you can die from dehydration, and pretty fast)…did NOT help me at all.  Is it any wonder that my brain decided to go on vacation without me?

I tell you all of this because it’s not shameful.  I may add more details as I feel comfortable talking about them–there are still parts that make me go all British and emotional lability all over the place.  I am finding that I get very anxious out in public, especially in larger crowds.  (Grocery stores pretty much do me in.)  I would prefer not be agoraphobic, I like the outdoors, but…I feel safer in my house, no matter how filthy it is, or how much laundry needs to be done.  I do not plan on living my life like this, so I will seek out whatever kind of treatment will help me cope with the levels of anxiety and stress I have–I obviously need the help.

I am almost OCD (CDO?) in the taking of my medications.  I set them out, verify them with Beloved, and take them.  I am back to eating more or less regularly–and we are trying to get started in the routine we want to have in Eureka, which actually involves eating 4 times a day.  Better for both of us.  I am sleeping a full night and not having to nap during the day (or face crash into my keyboard!).  My guts have finally settled down and I feel pretty good physically.  I do not need the quadruped cane, using the single footed one instead–and mostly as an accessory, instead of leaning and limping along.  I am walking smoother, not stumbling and the speed is kind of amazing.  Oh, I’m not going to win any races, but at least I can move almost naturally.

And we are taking this week to heal and recuperate, especially as “SOME” of us had real surgery and aren’t allowed to lift or exert.  Then we begin preparing for the move, and he’s got it planned out pretty well, I think.  He’s reminded me that while it may look overwhelming (and it does!  Something I can get frantic about, even fuuuuuhhhh-KING frantic!), it’s not that bad and once things start to move (like the furniture his parents are taking, once they move at the end of THIS month), it will get easier and easier.  And he not only reminded me, he stressed this: on November the 1st we ARE flying out of here to CA.  I was beginning to lose sight of that.

We’ve talked about it before, so I won’t badger you with the details, but CA, especially Eureka, is necessary for us: food, cost of living, constancy of the climate.  I wish it wasn’t across the country, but it is, and so there we are.  This is a time of real introspection for me, figuring out what obligations I have here, if any…and what onus do I lay on others that I should not, that I have no right to expect others to do or be?  I’m having to re-examine my ideas about interactions and letting go of the dreams I have held as truth.  I have acknowledged the facts, the truth of the actual situations, and accepted that what I thought should be, never will.  And that it’s okay.  It was never going to be like that, was not for the generations before me…why should I be different?

I will appreciate phone calls, Skype, or Facebook (a couple of things my grandmother would have killed for when I was little) to keep in touch with friends and family, to see pictures of my grandchildren and keep track of what’s going on.  In some ways, the social media of Facebook has us MORE connected than if we all lived in the same neighborhood…no matter where in the world we are.  I look forward to keeping in touch with everyone, as much as is ever done.

I’m not afraid of being crazy, or losing my memory.  I’m only afraid of not living the life I’m supposed to be living because I’m so afraid of losing my mind or memory.  This has been a time of deeply profound reassessment for me.  Or as my Beloved and I talk about this, using technical terms: I have just upgraded my OS from XP to Windows 7–and not only that, gone from 32 to 64 bit.  Even once the actual OS successfully upgrades, you then have about 13 reboots as it adds the new dlls, the new drivers, and so on.  I can only be lucky enough to have the legacy hardware accept this new OS and not crash and burn.  I still have to re-download Chrome and configure everything, but I think, I hope, the new program is up and running.  We shall see.

In the meantime, I take it literally one day at a time, sometimes just this hour by this hour.  I am hoping that the new antidepressant (Efexor) will help; I am going to ask for something for the anxiety and stress, since the Clonazepam doesn’t seem to work really well and I’d prefer something a little less addictive, tolerance building, etc.  As I mentioned, there is a lot more drama to the trip to Richmond, but I truly cannot handle trying to write it down at this time–it still stresses me out.  Not trying to be mysterious, or get you to buy my next book, but just letting others know that shit happens, and you can only muddle through it the best way you know how, hoping to come out the other side still mostly intact.

I am still me, but I have changed and I think am still continuing to change–and that’s mostly in my head.  Need to do a LOT of meditation and contemplation, once I can “ohm” without falling asleep.  At this point, my Beloved is a better Buddhist than I am…and that kind of smarts.  Let go, says the Buddha.  Let go.  Apparently, there are things I still need to let go of.  I’m trying, trying my best.  Think that’s all that can be asked of anyone.

Namaste!