Road Trip to Redding

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

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

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

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

Peace out!

(Part Two)

Getting Along Like a House On Fire

To paraphrase Garrison Keillor, it has NOT been a quiet week in Lake Woebegone.

I still haven’t heard any decision about SSDI and whether I need to start looking for a job or not. I did talk to the paralegal for my attorney, who explained that the moment my case’s change in status is officially entered into the computer, they will know–which is about 7-10 days BEFORE I’d see any hard copy snail mail. And the office checks that computer every morning–and they will call me the minute (more or less) they find out. Which means I can relax (somewhat) and not keep trying to check the mail on something approaching a regular basis.

In the meantime, I try to find other things to do with which to occupy my mind and keep me from running like a hamster in the wheel of indecision and dangling answers. Beloved and I have taken sandwiches and donuts to the beach for a quasi picnic lunch a couple of times, as the weather in September, in Eureka, is amazingly wonderful. Or at least it has been for us.

My in-laws generously arranged for the bed frame to appear. What a difference 14 inches in height can make for getting out of bed! Instead of trying to rise up from a deep knee bend (thighs….of steel), now we can just sit up and put our feet on the floor. The change in sleeping level is inexplicable but definite. And the ability to get in and out of bed without a plan for escape–or what I have always referred to as the “wench winch” is priceless. It is worth the flare-up that putting it together cost me. Sigh.

Fate herself is helping out with distractions…if you want to call it that. Last Sunday, all four of us at home (me, Beloved and the roomies, G & M)…He in our bedroom, G in their room, with me and M in the kitchen–I was making late lunch/early dinner and M was doing dishes. (Better someone else than me…I HATE doing dishes.) Then G says, “There is smoke coming in the window.” Why yes, yes there was…in fact, look–it’s starting to come into the kitchen window, which is on that same wall.

G & M run downstairs to see where the smoke is coming from. Oh my! Oh dear! Conniptions and spasms! Flee! It’s OUR house that’s on fire. (It used to was a house; now it’s 5 apartments. We’re upstairs.) I turn off the GAS stove and grab my phone and iPod. (Oh the things we choose when we have to save our most precious belongings.) Beloved picks up the house phone and is dialing 911 even as he exits the building. The roomies, being young and spry, run around the house, banging on doors and making sure everyone is out of there. Beloved moves the van from in front of the house and we stand on the sidewalk across the street. Definitely smoke…and hot enough inside that the front window has already cracked. Which, for those you who are neither firemen or arsonists (or fascinated with fire), means that the heat is already reaching dangerous levels. I’m trying to think about where we could go, with our van and the clothes on our backs…and our phones…if the house goes up in flames.

A crowd gathers and we are avidly listening for the sirens. Now you must realize that the fire department here is volunteer–and up in Eureka–we live a couple miles outside–so we’re not talking a 5 minute response time. On the other hand, to get everyone to the firehouse, in their fireman’s suits and out to us only took about 10-15 minutes. Acceptable. When they get here, the guys are off the truck almost before it comes to a stop, yanking hoses off and going up to the house to see what they are facing. Within moments, they are inside and knocking the windows out. Axes, ladders and … chain saws? Oh my.

Beloved had called the landlord right after he hung up with 911. “Hi, landlord? Yes, it’s your renter…and your house is on fire.” Needless to say, the landlord arrived before the second fire truck. By the time it was all done, we had three fire trucks, including the brand new hook and ladder, at the house. People were taking pictures and video but no one had the bad manners to bring a Jiffy-Pop popcorn pan and make it…on our house.

So as we’re standing there, one of the other tenants comes up to us and asks what’s going on. We know which apartment he lives in…and have to tell him, “Dude, your stuff is on fire.” He and his son (5 years old) stood there with the same expression on their faces: big eyes and a growing realization that…their stuff is burning. The child was aghast that the firemen were breaking the windows. I told him that it was okay, they were already cracked.

I’ve been coughing since we walked out of the house–and it’s just getting worse, to the point that Beloved steers me over to the fire chief to find out if EMTs are coming to this housewarming party. And they were! They got me hooked up on oxygen and starting taking information. Then the actual ambulance arrived and the paramedics took over. They suggested a ride for me, and off I went, to the ER at the local hospital–which I have now been to 3 times in the past 6 months. They’re going to think I’m a hypochondriac or something. Oh well.

A breathing treatment (albuterol inhaler on the oxygen mask) on the way to the hospital. And the paramedic inserted an IV port–while we’re speeding down the highway. (By the way, no siren for me as I was not dying.) I have to tell you, that was the best stick for medical purposes I’ve ever had. We get to the ER and were whisked straight back to my own room. Great service, let me tell you. No waiting out there with all those sick people.

Another breathing treatment and a nice shot of anti-anxiety medication since I told them that if I had been at home, I’d have been taking my own. Answered lots of questions, which is not easy to do with an oxygen mask on. Only slightly better than talking to your dentist when he’s exploring for your tonsils. Got a chest x-ray. Beloved showed up to tell me that the cause of the fire had already been determined.

Modern technology is a wonderful thing. If this fire had occurred 10-15 years ago, the firemen would not have had the thermal scanners and such that they used to deal with the fire. Not just the water and the chain saws–yes, they used them on the outside wall, to open up the room where the fire started–but thermal detection of just how far the fire had gotten and if the house was safe to go back into. The fire chief told Beloved that our quick calling to 911 had made a real difference. Three minutes more and our apartment would have gone; three minutes more after that and the house would have gone. There’s a small and often fine line between utter disaster and a great story to tell your friends and family.

So in the course of ascertaining that the fire was indeed fully out, that it had been contained within a specific area and there was no further danger, the cause of the fire was discovered…a wood burning tool, left on, under the plastic table. The son had gotten a hold of the tool and was using it–and jumped up to run out with dad and go skateboarding. They had literally only been gone about 20 minutes. Oops. I guess that tool really lived up to its name. I wonder what brand it was…

The smoke that had gotten to me was not plain old wood smoke…it was the chemicals from the plastic table, along with everything else that was burning. No wonder it irritated me and gave me bronchial spasms. Adding insult to injury for the tenant who is now homeless…all of his textbooks were on top of that table, “were” being the operative word. But there was a little ray of sunshine for them–the pet lizard (in another room) survived to tell the tale.

So I spent a couple of hours in the ER, coming home with orders to take it easy, come back if I had any worsening symptoms or it didn’t improve within a few days and a bottle of cough syrup that has phenagren and codeine in it. The thrice-blessed in-laws threw some money into our account so that we could go out for dinner. (I was making sausage and pasta. Smoked sausage suddenly did NOT appeal.) We hit the local diner for comforting comfort food…and then home again to try to recuperate from the sudden deluge of stress (Oh my gods! The house is burning!) and then relief (Oh my gods! We aren’t homeless!).

The press had shown up and done their stuff, so I went looking for us on Google. Come to find out, we were actually the TOP story for the news that evening. “A house… BURST INTO FLAMES” (film at eleven). Well, not really BURST. But it was a slow news day. (Check out the broadcast, here: Top Story! ) And that’s me the EMTs are hovering over–I look like I must be sprawled out on the sidewalk, but I was sitting on the curb, really! And when the paramedics roll the gurney over to the ambulance, that’s me again! I doubt that I’ll be on CNN, but frankly…living in a town small enough, calm enough that our fire was the first thing on the news…priceless! I would not give that up for anything.

Let’s just say that for the first time since August 18 (the adjudication), I was not thinking about the judge and her decision about my life. Being asthmatic meant that what I had considered a small amount of smoke was actually more. For the first time in almost 10 years, I was reminded what living with (untreated) asthma is like. I have not been on any maintenance medications because I was doing well without them. Now I’m hitting the rescue inhaler like it’s my bong and I’m a stoner. I get hoarse if I talk too long, I get tight in the chest (that belt around the whole body, under the arms but above the boobs…and way snug. I like to breathe, I’ve been doing it my whole life–so this is not a happy state of being. I also had some “infiltration” in my left lung, lower lobe.

This is not a “rest and take it easy for a couple of days” kind of thing. This is more a “keep breathing and if there is any problem, or it doesn’t start to go away within like a week, come back to the ER” kind of a thing. It has a very particular way of removing the focus of my brain from SSDI and more onto “just keep breathing, just keep breathing, breathing breathing”. Three days later and I’m still coughing a bit, still having tightness–and still using the inhaler. I used to have to throw away brand new, unused inhalers because they had expired before I needed them.

BUT

I am safe, Beloved and the roomies are safe. Our stuff might have a little smoke smell, but it’s still our stuff and not burnt then water-soaked detritus. We still have a place to live–and coincidences abounding, the roomies are actually in the process of going to their own place and will be out by the beginning of next week. So we’ll continue to live in our one room until their room can be repaired, where the fire came up the wall. There’s that big hole the firemen put into it and soot to clean and singed wood to replace. It only caught the corner of their room, most of the damage is actually in their closet–so cleaning that out and organizing the clothes just got done a little differently than it would have without fire to change the schedule of completion. And the only things that were damaged were things they were getting rid of anyway.

We are local celebrities–of a sort. We’re getting more traffic on our road than I’ve seen in the entire time we’ve been here–gawkers and rubberneckers, come to look at the “house that burst into flames”. It’s actually kind of funny to sit up at my desk and watch them go by. Gotta love that small town environment!

I am grateful that it was not worse and I acknowledge the protection we were given–a fire of greater magnitude would have really been catastrophic in more than just the loss of belongings. So like a roller coaster, that first great tall hill was scary fun, but I’m happy to be back on the ground now. And as Beloved pointed out, we’ve been through earthquakes (one in VA, and a nearly record-setting one here in CA); we’ve had flooding (in the closet of our bedroom); hurricanes (Irene and whatever the other one was, while in VA) and here we are. He figures locust and frogs are all that’s left. (You know, the ten plagues of Egypt. It’s Biblical.)

So that’s what’s going on in my life now. I hope that yours is not this exciting! (Well, not in this way.) Just another day in the human experience, and hopefully (fingers crossed) not one that has to be repeated. Ever. Take a moment to look around your home and imagine it going up in flames–and then be thankful that you have it. Hug each other and remember that we cannot ever be prepared for sudden disaster, so pause and soak in the moments of peace and love, when life is going smoothly. The time to be mindful of your life is not when the flood waters are coming up over the porch steps, or when the fire is raging across the house–but every day, at any moment. Because a moment, that brief flicker of time, is all that might separate life from death.

This was a scary event as it happened. I am relieved beyond words that it has settled into just a dinner party-stopping story. Namaste!

More Adventures and Updates from CA

It’s December in Eureka.  Well, it’s December everywhere, but I’m in Eureka.  It’s been colder than usual and the locals are complaining about the hard winter.  Nobody here owns a winter coat, so even when the mercury dipped down into the 30’s we still saw people in short and flip-flops, shivering as they walked down the street.

We’re getting settled in, forming a “Eureka” routine.  Learning where stuff is in the local grocery store, discovering that we don’t necessarily have to plan our errand route in a specific order because if we miss one, even if it’s back across town?  That’s only about 2 miles at the very most.  Distances confuse us, used as we are to dealing with that as the measure of how long it takes to get from one place to another.  (In VA, it was the only way to know how much time to allot.  And if you missed a stop on your list, it could mean backtracking 15-20 miles.)

I can sit at my desk and look out the window…and see water.  We have a lively crowd of birds who come to eat the seed spread by my neighbor in the middle of the road.  No, he’s not hunting fowl for dinner…it really is that small a podunk town (about 1/4 square miles total area, with less than 300 residents).  No traffic to speak of.  We know when someone is walking by because all the dogs sound an alarm.  Or are asking to be pet, depending on your point of view.

I’m still having stress anxiety issues.  I don’t mind being outside, or going places–as long as I am not having to actually interact with more than about 3 people.  So that means going into the grocery store can be hard on me.  I manage it most of the time by keeping my head down and staying “inside a bubble”, looking only at the shelves and floor.  If I have to look at people, watch out for other carts and keep adjusting my motion through the store to accommodate the other shoppers…it eventually freaks me out.

I got an “emergency” appointment with my new psychiatrist a couple of weeks ago.  (Side note: we are in CA, land of the hippies.  I address my social worker and psychiatrist by their first names.  VERY informal, even at the VA.)  I am on a new anti-anxiety med (Hydroxyzine Pamoate).  It began life as an antihistamine, but is used a lot for the Vets who have PTSD.  Seems to be working for me, although as an antihistamine, it comes with the warning about the sleepies (and it does affect me that way) and it also can caused blurred vision.  Yup, got that too.  But I do feel like it actually does something, which I never could prove with the clonazepam.

I get to meet my PCP the day after Christmas.  I am already making a list of things we need to talk about: pain management, a scooter for me, an assessment of the meds I”m on.  My psychiatrist told me that the VA (here) takes pain management very seriously–and is willing to use non-traditional methods to get it.  They will cover chiropractors, accupuncture and massage therapy.  WOW!  She also told me that I should use ANY herbal supplements I find helpful (code word for medical marijuana, or MMJ as I’ve seen it mentioned) as long as I keep her in the loop so that she can make sure there’s no bad interactions with my pharmaceuticals.

I need a scooter because walking, while not particularly making my legs hurt, does cause back spasms and sciatica.  I can feel exactly where the degenerative arthritis is, in my spine.  And since most of the retail stores here are not national chains, they don’t have handicap access carts.  The grocery store has one, which means I can’t do the Beloved and Me show for shopping that is usually our habit.  (He can’t walk the store, either.)

On the plus side of things, we like our apartment.  We like the town itself.  (Both our little baby town and Eureka!)  We like the people–they are kind, polite and very friendly.  We are eating better, and our health is improving (I think) because of it.  The cost of living is much cheaper so there is less stress about money…let’s talk a little more about that.

There is less long term stress about money.  We know that we can make it on Beloved’s SSDI and my LTD.  However…I am up for review by the insurance’s “Any Occupation” board, in which they try to tell me that I can go back to work and I tell them, no I cannot if only because I’m on narcotics for pain relief.  I shouldn’t drive.  I don’t do much of it as Beloved handles the transportation.  I cannot walk or stand for longer than about 15 minutes.  I still nap frequently.  I freak out around groups of people (more than 4-6 other people–big group, eh?).   Tell me which job you think I can handle, that fits my skills, experience and training and who would hire me.  Hopefully, they will see my point of view and agree with me, granting me “real” LTD (good until 2028, when I become eligible for Social Security, based on age not disability).

If I am rejected (and told to go back to work), we become immediately eligible for a lot of Social Services.  Which would cover the difference in income, and we can manage to live here comfortably with that assistance.  We are both signed up for the ACA and need to find out, on Jan 1, with the rest of the nation, just exactly what we are eligible for in healthcare.  Between that and the VA, I am seriously COVERED.  But Beloved will finally have health insurance again, so we can begin to deal with some of his medical needs.

The cost of an extra week in the hotel and 2 extra weeks of renting a car have really come back to hit us hard.  It burned up money we needed for deposits and down payments, some of which we ended up having to borrow to be able to get things like the car.  So we have reached a point where we have month left at the end of our money–never a good thing, since the idea is to have money left at the end of the month.  Sigh.

We have food to eat, no problems there.  But bills are due and will have to paid the minute any checks come in.  (Mine, his or the returned deposit from our last apartment, which hasn’t shown up yet and is more than overdue according to the complex’s manager and her own timeline.  Le Sigh.)  And there is no extra money at all, for presents to each other in this holiday season or even getting some of the household items we need.  Things that you don’t truly realize that you need to have, until you need to use them.  Kitchen towels.  Potholders.  A Scotchpad to scrub recalcitrant food off of dishes.  A toilet brush.  Soap dish.  Colander.  (I’m using a scoop sieve to deal with noodles, but something I can just pour the food and water into and let it handle the draining water would be nice.)  Just little stuff.  That doesn’t include the inevitable restocking of the spices and nonperishable pantry (stock) items.

On the other hand, when I do get to purchase these things, I get to choose what I want.  For the past 32 years, all of my kitchen towels were given to me, I didn’t pick out a single one.  Now I can go get whatever my little heart desires.  I left the potholders I had made 30 years prior behind in VA.  I will get new ones.  Or make new ones.  So there!  And I don’t have to get them at Bed Bath and Beyond.  I’m totally okay with the dollar store.  As long as the towels dry my stuff and the potholders keep me from burning myself, that’s fine.

So it’s the holidays.  Beloved and I got some early presents from his folks.  They sent us our new convection oven (http://www.brevilleusa.com/the-smart-oven-r.html) and it is the bomb.  We also got a variable temperature kettle (important because every kind of tea requires a different degree of heat to brew to its perfect state.  And coffee should never be boiled; it is made at 200 degrees.  Those 12 degrees make a huge difference in its taste.) that we use almost daily ( http://www.brevilleusa.com/variable-temperature-kettle.html).  His parents got us every accessory for the oven and even bought us the “Brownies with all edges” AND “Lasagna with all edges” pans.  (http://www.amazon.com/Bakers-Edge-Nonstick-Brownie-Pan/dp/B000MMK448)

We plan on getting the Breville breadmaker as well.  The local, organic and non-GMO loaves of bread are wonderful, tasty…and expensive.  It’s about $5 a loaf.  We can make the same thing for less than a dollar a loaf (for ingredients).  And we eat enough bread to make that breadmaker a worthwhile investment.  We’re also talking about getting a Belgian waffle maker; the prices have come down considerably since Beloved bought one for his parents ($90 then, about $25 now…) and it’s a quick and easy way to have a carb for a meal.  And once I get a good recipe for the mix, I can make either sweet waffles or savory.  Chicken and gravy on waffles is GOOD!

Like I said, we’re good for food.  And we have a roof over our head.  So life is pretty good.  Yes, having less than a dollar in our accounts is stressful, but once the checks hit, we’re fine.  We continue to learn how to live a life without all the mad, stupid amounts of stress we had in VA, to slow down to a pace of life that is easier to deal with.  And it’s not just us imposing this slow down–the general pace of things out here is slower, gentler.  And no one seems to be rushing anywhere (except the HSU students and they are not locals).

We have our computers, as old and beat as they are; we have our phones (new and awesome, but not really usable in the apartment due to old wiring interference).  We have a place to live, food to eat and a reliable source of transportation.  We have each other.

Is it everything we hoped for?  No.  Is it even half of what we thought it would be?  No.  BECAUSE there were things we have that we didn’t even know to ask for.  Because there are things which have turned out to be important to us that we had not considered.  Is it a better life than we had in VA?  A resounding YES.  Do we regret moving out here?  No way.  Besides, I still have to learn how to surf.

Namaste!

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!

Where Did April Go?

Okay, so I lied in my last blog.  We are not speaking “soon” because it’s “later”.  Quite a bit later, to tell the truth.  Sorry about that.  So let me catch you up on all the news and what’s happened in the 2 months since we last talked.

First off, we are NOT getting the car.  My appeal to SSDI has been accepted, but because of the glorious sequestration, has not even been assigned to a caseworker yet, which means…no answer for a long time, maybe a year or more.  (I hope not, but I’m not holding my breath for a rapid answer.)  Beloved’s appeal for LTD (Long Term Disability) has been accepted and they have from 45 to 90 days to make a decision.  We’ll see how that goes because with two separate government agencies assessing him as permanently disabled, the insurance company would have to be completely stupid and a prick to turn him down.  But it’s been known to happen, so again, no holding breath.  MY appeal for LTD has been awaiting medical information which the lawyer should have this week, and that will go to the company once she has it.  So we are back to playing a waiting game for almost any income that might occur.

The most major change, and a new decision on our part, is that we are moving to Eureka, CA at the end of October, when our lease expires.  Beloved asked me, “If you could live anywhere in the US, where would you go?”  So I began to reject states that are too cold, too hot, too wet, too dry; we also decided against those states whose local governments have lost their freaking minds (anti-women legislation or mandated religious affiliation for residents of that state).  Once you have cut out those things, you’re pretty much left with the West Coast.  No SoCal; I lived there before and will NOT live there again.  WA is a little on the chilly side.  So I looked at what was left and there was OR, and there was…I FOUND IT!  Eureka!  (You know that’s what “eureka” means? “I found it”.)  

Beloved was interested so I began to research it.  Everything I found just made it more and more obvious as the place for us to live.  The cost of living there is about 30-35% cheaper than living here in VA, even as far south from DC as we are (50 miles or so).  Our cost of living is about 125 of the index for median cost of living.  If 100 is the average location, than it is obviously more expensive to live here.  NYC is about 180, if that helps.  So Eureka is 94.  We currently live in a 1 bedroom apartment; I can rent a 2 bedroom house in Eureka for the same  amount.  There is no tax on food and the costs for organic are about 1/3 of what they are here at Wegman’s.  And the main local grocery store is Eureka Natural Foods–it’s ALL organic and they tell you where everything came from.  

Eureka is in Humboldt County, home of the Happy CA Cows.  So milk and milk products (even RAW, sold at the grocery stores) are local as is the beef.  Almost no carbon footprint for hamburgers or steak.  Agriculture is one of the main industries here and almost all of it is organic.  CA is working on making Monsanto label all of the GMO foods and doesn’t seem inclined to let Monsanto spread its unholy evil GMO seeds anywhere in this state.  Organic food is a cash crop here and GMOs would totally fuck that up.

Eureka has a population of about 30k, surging up to a roaring 45k during the work day.  Most people who live in the feeder towns have about a 10-15 minute commute.  That won’t matter to us, of course, but it’s nice to know that mostly everything we want is within a 10 minute drive.  There is public transportation 6 days a week.  Eureka has a surplus of water and electricity; a monthly bill for the average 1 bedroom apartment for electricity is about $10-15.  Gas is the more common utility for heat, hot water and cooking.  

Heat is a bit of a misnomer.  Every place that I’ve looked at has one central vent, set in the wall, about 30 inches by 4 feet, that heats the entire home.  The lowest temperature ever recorded in Eureka was 24 degrees; the average winter low is about 35 degrees.  The highest temperature ever recorded was 85 degrees with the average high temp in the summer running about 75 degrees.  The average temperature YEAR ROUND is 65.  There’s about 3 days each winter where you might get a freeze, maybe up to 3 inches of snow.  There are essentially 2 seasons: fall/winter, or the wet season, with up to 6 inches of rain and spring/summer, or the dry season, with lots of sunshine.  No one has an AC unit.  And the fact that the weather doesn’t change every 15 minutes like it does here will be an immeasurable relief for my poor barometric bones.

Eureka is right on the Pacific Ocean.  That alone makes it THE PLACE for me.  I love the ocean and have missed living near to it, let alone NEXT to it.  Eureka is also the only deep water harbor between San Fran and Coos Bay (WA).  This means SEAFOOD GALORE!  Salmon, oysters, Dungeness crabs, shrimp…other kinds of fish and a sushi diet for Beloved and me!

Eureka is also the #1 Small Town for Art and Creativity in the US.  They have an annual parade of floats built on bicycles, called Kinetic Sculptures.  There is an Old Town section and Victorian is the most common house style, with the Carson Mansion, an incredibly glorious example of the style, as a tourist site and hotel.  There is the Samoa Cookhouse, which preserves the food of the “good old days” with a museum of photos and cooking related objects and a restaurant that serves the olden time recipes family style.  (Side note: apparently the food ain’t that great, but it’s an awesome place to take out of town guests for a taste of the Gold Rush days.)

Something else about Eureka that makes Beloved so happy he could wet his pants: they have one of the largest, best known game stores on the West Coast: North Coast Roleplaying Game Store.  (He and I have both heard of it, mentioned in some of the science fiction we read–Larry Niven and John Ringo.)  He anticipates being able to game several nights a week, and perhaps even getting a little part time job there.  We have also located an ongoing wood working class at one of the local middle schools where for $15 a session, you get to learn how and then to actually make wooden stuff.  Beloved is already drawing up plans for our computer desks.

Going to CA would mean leaving BRUU (Bull Run Unitarian Universalist).  But I have found HUUF (Humboldt Unitarian Universalist Fellowship) and the website shows a group of people that I am eager to meet.  Between the game store, HUUF, the woodworking class, and the grocery store (where we ALWAYS end up talking to lots of people), I think we will be able to find a new social circle.  I certainly hope so, as I also hope that our health, particularly mine, will have risen back up to levels of being able to do things again.

Going to CA means leaving family and friends behind.  We have talked long and hard about this, and have had to come to the reality of our lives and the fixed income we have.  We cannot live on the edge of poverty, one car repair or serious illness from actual poverty, here in VA, waiting for friends or family to visit.  (Or feeling well enough ourselves to go visit them.)  As much as I would like to stay near all of my grandchildren, the truth is that we don’t see any of them often enough to merit staying.  And it’s not like this a new idea in my family: my mother moved far away from her mother for many years.  We were fortunate enough to live very close to my mother’s parents for my high school years so that I have many memories of them.  I moved away from my mother for many years and then when I moved back to the area she lived in, she and my father moved to TX for their retirement, with most of the same criteria as we have used for our decision to move.  

There are the Interwebs, Skype, email and Facebook for us to stay in touch–and indeed, that’s how we basically interact now.  And in time, there may even be the opportunity for my children to bring their children to Eureka to see us and visit.  Or maybe we will save up enough to fly back East.  I don’t know that these things WILL happen, but I will be open to watching for them if they occur and taking advantage of them when they do.  The same thing applies to our friends.  Beloved’s best friend actually travels to CA 4 or 5 times a year and is very likely to add Eureka to his flight plans–and his fiancee indicates that he “loves” CA, so who knows?  Maybe in a few years, he’ll “retire” out to Eureka as well…take a new job there or maybe freelance as a consultant (he’s a server engineer and in great demand).  

So by all indications, Eureka has a better climate, better food, better cost of living, better housing, better life for us.  All of these things mean that our health has finally got the chance to improve to livable, bearable levels.  Or so we believe and we are beginning the process of getting out there.  I am impressed with how much Beloved is willing to get rid of, willing to sell or throw away…all we’re taking is what will fit in a small moving container (like a PODS, only not that brand); our two 70 pound suitcases (each) and our carry-ons.  We will begin our life in CA in style–we are budgeting to fly out FIRST CLASS!  Beloved is a large man and will not fit a coach seat.  Although, truth be told, I don’t fit a coach seat well enough to be comfortable with a cross country flight.  So we’ll have luxurious seats, a real meal, drinks, priority boarding and disembarking–and the privilege of taking TWO suitcases stuffed to the gills.  (But not heavier than 70 pounds.)  

In the meantime…I was astonished to receive approval from the VA for health benefits (considering the backlog of applications).  That means I have health insurance again, thank the Maker.  I have the first available appointment, July 17th.  Just a little backed up there, are we?  And the clinic is in Fredericksburg, so we can go to the Waffle House.  Or to South Vietnam Restaurant, that our friend introduced us to–or the incredible kabob place we discovered last time we were in town there.  I am hoping that they will give me back the Lyrica, because I’ve just been going downhill…

There is HUGE news on the fibromyalgia front: UIC College of Medicine has researched and found the biomarker for fibro–and they have determined that it is an AUTOIMMUNE disease, not a neurological one as has been thought.  What does that sentence mean?  It means that there is now a BLOOD TEST FOR FIBROMYALGIA!!!!
It can be proven with a medical test and is NO LONGER a “self-diagnosed” disease.  It also costs $744–so it’s another thing I’m going to ask the VA about paying for.  I’d like to have it done so that I can use it as evidence for my various disability benefits.  When I read about it, I burst into tears…it’s not in my head, it is REAL.  Like I’ve been trying to tell you bastards, this is not laziness or lack of initiative…it’s a disease and it affects me!

I’ve been doing badly enough that Beloved insisted on taking me to our PCP, and paying full price for the visit.  The doctor is wonderful–he charged us for the cheapest visit, and the office policy is to give a 40% discount if you pay in cash, in full, at the time of the visit.  So what we had budgeted $200 for ended up costing only $96.  Which was good, because the doctor gave me a new script for Neurontin (for pain) and then UPPED the Vicodin dose to twice what I had been taking…and those two medicines cost us $120.  I have scripts for 2 other meds, but no money to get them yet and I may just wait and take them to the VA and see if they will fill them (or re-write them and dispense me the meds).

The Neurontin helps, and of course, double dosed Vicodin also manages the pain MUCH better.  I am starting to feel a little more…awake, alert…not locked in a glass box made of pain.  I am hoping to be able to do stuff around the house, which has deteriorated to the point where I just want to blow it up and be done with it.  Sigh.  Little bits, little efforts done when I have the energy…rest when I need it and things will get done.  

Beloved and I went up to Baltimore a couple of weeks ago for the Lizard’s baby shower.  She is not going to make it to the end of May and in fact, I expect the phone to ring almost any time now.  It’s a little girl (if I hadn’t told you) and so now Dad is seriously outnumbered in a house full of estrogen!  It was good to see EG–she’s getting tall and she speaks so clearly!  Nice to not have to try and figure out what she’s talking about.  And she’s excited to be the Big Sister–hope that stays true, since EG is used to being The Only Child and the center of the Universe, at least in her world!  I think it will–my son never expressed any resentment of the new baby and he and his sister have grown up to be very good friends.

We’ve been telling everyone why they should move with us…I’d love it if all my people came with me, and we were all living in this wonderful place with wonderful lives!  Minimum wage in CA is $9 per hour and Eureka has a ballot item to raise their minimum wage to $12 in January 2014, with it tied to the cost of living index, which means an automatic increase each time the cost of living goes up.  If I had to get a job, this would be an acceptable wage–since I was only making $14.48 after 6 years at my former place of employment.  Even with SSDI, we can each earn up to $1k per month, as long as we don’t go over a total income of almost $20k together, for the year.  So we can certainly do a part-time something for what Beloved refers to as “beer and skittles” money.  There is also a rumor that CA gives an additional state SSDI benefit to make up for the cost of living–about 20% of what the government is paying.  That would be a nice little addition to our lives!

So that’s about it for us.  No buying a car here because we’ll get one in CA.  Health benefits for both of us (mine is VA, his is Medicaid/Anthem), thank goodness.  Lawyer is still working on LTD benefits, so fingers are crossed for those to be approved and paid out.  The house is disgustingly dirty and messy…but I am finally starting to feel a little bit better and plan to take care of that, one little step at a time.  Most of our time now is focused on getting ready for the move by sorting and making decisions about belongings.  We’ll sell what we can, donate what is usable but not sellable, dispose of properly that which is neither usable nor sellable…and reduce our belongs to fit into a 6 x 7 x 10 foot box.  This will also help get the house into a better shape for us to live in, even if it’s only for a few more months.  

We are looking forward to the pool opening on Memorial Day weekend.  We swam a lot last year and Beloved really enjoys it.  It helps with toning muscles that couldn’t stand any other form of exercise or working out.  It is part of our plan to swim at least 3 times a week in Eureka–there is a wonderful community center that has a pool and hopefully won’t be too expensive to belong to it.  We did go to Black Bear for Beloved’s birthday lunch and then went to see “Iron Man 3” when it opened as a late present.  I’ve already asked for steamed crabs for my birthday in August–probably the last time I’ll get those BLUES…but the good part about Dungeness crabs is that you can really only eat one, maybe two–they are MUCH larger.  Slightly different taste, but I can buy them live and cook them with the Old Bay seasoning…

Life goes on, some days good, some days bad, some days terrible…and the occasional great day that makes up for the terrible ones.  Trying to get healthy (hard to do without insurance, but now we can…), not doing anything major or earth-shattering except moving!  I’ll keep you updated on the process and bitch about the horrors of moving (which I actually hate)…

Namaste!

*****UPDATE****
Had a knock on the door and the FedEx man is standing there, wanting a signature.  Small package, no idea what it is, no visible return address.  I sign for it and then take scissors to open up this unknown delivery.  And what to my wondering eyes should appear?  My LYRICA from Pfizer…a 90 day supply and I can get a refill, so for at least the next 6 months, I will have ALL of my meds.  I am looking forward to more energy and more ability to do things, since there are things that need doing!
WOOHOO!  I will take this as a sign that more good things are on their way…

What Do You Do About Stress When You Have A Stress Anxiety Disorder?

So it’s been an exciting couple of weeks.  And frankly, that’s not a good thing.  Last weekend, I had either a stomach flu or food poisoning or a massive allergic reaction to MSG (or an MSG-like chemical, which I have been avoiding like the plague and would probably be hypersensitive to it now), so without going into TMI, I was purged cleaner than…well, clean from the top to the bottom of my gastrointestinal system.  It was a rough couple of days but at least Beloved managed to get by with just a touch of it and we were not both of us running for the toilet, the one and only single toilet that we have, at the same time.  Could have gotten ugly.

I’m feeling much better now, thank you.  The house continues to look like shit and the dish fairies refuse to stop at my house and do my dishes, so they are also still piled up.  And let’s not even talk about the laundry fairies.  Sigh.  It’s starting to be overwhelming and I am just going to have to nail my courage to the post and get on with it.  Tomorrow.

Got to spend a couple of days with my Froggy and his mom.  Made French toast for him that he seemed to like–he ate it up!  And bacon, of course.  That was the good part.  The bad part was when they got back to his other grandmother’s house, everyone got sick with stomach flu.  Their house was like the plague house and even Grandmom Nut-nut (that’s what he calls her, don’t ask me) says she was ready to paint a white cross on the door and be done with it.  Apparently the flu is widespread throughout the country and we’ve all been a part of the statistics.  Hopefully we’re not going to have to do that again soon.

We’ve had mixed news on the income front: Beloved’s 401(k) has been cashed out, to finance our luxurious lifestyle for a while…but the Long Term Disability has been denied because they think he can return to work.  HA!  Not on your tin type.  We will of course appeal it and have a good chance of turning it over if we can show SSDI paperwork that assigns us permanent disability status.  I got to be evaluated by the Social Security’s own doctor as part of the SSDI process.  I can only hope that I was pathetic enough…he never checked for the fibro pressure points, but did give me neurological tests.  He did tell us that we can expect some answer within about 4-5 weeks, so at least we won’t have to wait long.  I hope.  Need to call the lawyer and let her know how that went and that time frame.

I am also in the process of appealing my LTD–it just confuses me how they can say I don’t have a disability any more when it lasted more than the 6 months of Short Term Disability AND I am applying for SSDI.  It’s a cough cough LONG term disability, you assholes.  My doctor shouldn’t have to re-diagnose it every time he sees me, so if the last notes read that he gave me a new prescription for GERD, that doesn’t mean that my fibromyalgia is miraculously gone.  In fact, GERD is part of the problems WITH fibro, you dinks.  But I will have to go see the free clinic doctor next week because I am running out of my medications, so hopefully I can get some new, pretty and shiny records that show I still fucking have fibro and please pay me my long term disability again.  Idiots.

It’s a relief to have Beloved’s retirement money to live on, even if we’re not retired–and it’s not going to last forever.  It’s better than the ZERO money we had coming in.  Of course we’re both stressed out–in dis-stress, which is bad–the not knowing about a secure and steady income, as well as in eu-stress, which is good, but has all the same physical reactions–of having money to deal with bills for now.  It makes for a certain irony, since Beloved has a stress anxiety disorder and this makes him seesaw through emotions.  Thank goodness for chemicals and being able to sleep whenever we need to–because taking a nap resets the brain’s chemistry and helps a lot with that roller coaster ride of feelings.

At least he has something to look forward to–a friend of ours wants to run a game, which is geek speak for playing Dungeons & Dragons (well, not actually, but something similar) where we will each choose a character and role play through his story line.  His wife is making a model landscape, so we’ll have a terrain with buildings and so on to actually look at while we are playing and use as reference for the action.  It’s like make believe for adults…and table games, as this is also called, is something that Beloved has been doing for over 20 years.  It’s his major form of entertainment and he hasn’t been playing lately.  In fact, he was playing when I first met him but the death (literally, heart attack dead) of their Game Master sort of put an end to that.

We won’t actually play for another couple of months, but in the meantime, he is reading the books (Pathfinders, for those geeks out there who were wondering) and interrogating the Game Master (GM) on what will be allowed and what won’t…thinking about what kind of a character he’ll play and what skills he’ll have.  I intend to play as well, so he’s overloading my circuits with all kinds of verbal information, even though I don’t learn that way and will end up reading the books for myself.  Eventually, when he shares the PDF files of them which he downloaded.  If nothing else, it will be an excuse to get out of the house as often as the GM is running the game–once a week, every other week, once a month.  Whatever the interval is…we’ll go to his house, eat snacks, role play and have a good time.

And having a good time is a very important thing, because as Beloved points out, we are marking time right now and the house?  Frequently feels like a cell and we are fellow prisoners.  I think it’s the sheer uncertainty of the situation.  Until we get some definite answers about disability benefits and have a secure, assured income, we are just marking time.  We are waiting.  We can’t do things without money and we have no money right now.  Going to Wegman’s (with our blessed and wonderful food stamps) is the highlight of our week.  We take our time in the store, riding up and down the aisles just to be out of the house and doing something different.  Sort of sad, isn’t it?

We’d socialize more but going anywhere takes gas and that’s not free.  We live out in the boonies, so we don’t get a lot of visitors–and most of our friends have…what are they called?  Oh yes, jobs.  The old nine to five that means they aren’t driving 25, 30 or 40 miles (in one direction) to spend several hours at our house and then have to drive back–and still have time to sleep for work the next day.  I don’t blame them and I don’t expect them to–but that does put a crimp in our desire to see different faces.  I love my Beloved, but when you’ve spent the entire day together, what do you talk about over dinner?  I saw you today, I know what you did all day!  So how about them Cubbies?

Thank goodness for Netflix.  We can always watch a movie together.  We do spend a lot of time on the computers…to the point where I have essentially killed my desktop.  I kept getting a “CPU overheated!!!” error and the BSOD (Blue Screen Of Death).  It kept shutting off.  So I have removed it and in its place, doing a fabulous job for what it is, is my OLD laptop–a 5 year old Toshiba that can’t manage to run web pages AND flash games all at the same time.  So I have to pick and choose carefully or it will just shut off.  I think that was also a heat problem, and I’ve put it on the cooling pad; so far, so good.  I mean, we’re still having this conversation, aren’t we?

So what else is going on…we’re still talking about furniture moving.  Did I mention that the bed is in the living room?  We’ve realized that if we put it down by the patio door, the 3 foot wide path around it will overlap with the same 3 foot wide path needed to get from the front door into the living room or out to the patio–and if we put the bed down there, we regain that square footage at the other end of the room.  Guess what?  We’re moving the bed down by the patio door.  We’ll turn my desk 180 degrees and push it up against the bed–mostly so we can keep our pillows on the mattress.  Then we’ll arrange Beloved’s desks and book shelf in a neat and orderly fashion at the other end of the room, behind me.  And we’ll put everything else where it will fit and be useful.  We’re also talking about renting a small storage locker (when the $$ comes in, as with everything else we’re trying to plan) and emptying the house of the shituff, which we can go through at the locker and at our leisure and not have to live with it surrounding us, drowning us in its…shituffness.

Simplify, reduce, keep only what is necessary and needed.  Keep only that which is truly valuable to you in terms of usefulness and fulfilling a need.  How many shirts can you wear at once?  So how many do you really need?  I have already weeded out one large box of clothes to go–well, what’s left of them will go to the thrift store and the rest…my daughter-in-love has some new clothes.  How many bowls can you eat out of?  What is the minimum of belongings that is necessary for a good life?  We’re trying to find out and both of us are ready to let go of things we’ve been dragging around for years because we’ve reached a point in life where simplicity and “less is more” has become our credo.  With the e-readers, we can get rid of a lot of books because we’ll have them in digital form.  Oh, there are some we will certainly keep on dead tree…but they will be kept because they are special like his game book collection, or my 1938 copy of “Gone With the Wind”.

I look forward to getting the house into the order that we want, arranged the way we want.  If we do this right, it will be clean and simple–and simple to clean.  Living with the reality of our disabilities, which we are not now.  I hope that we can make the changes we talk about, because if we really do get things simplified, that reality will be easy to live with.  I want to invite people over and not be ashamed of my house.  I want to invite people over and be able to cook dinner without having to wash pans to cook in and plates to eat off of first.  I would really like to be able to cook dinner for my husband without having to wash pans first.  A new dishwasher would help immeasurably…that’s something I need to check on with the apartment manager, who was going to try to squeeze one out of the new budget.  I have to check with her tomorrow–and remind her that we’re supposed to have gotten a second post box key as well.

So life is what it always is–moments of high anxiety, low instances of depression and meals in between, same as for everyone else.  I may ask the doctor at the free clinic what s/he thinks of my medication regimen and if there are changes I can make that will get me off this plateau I seem to be stuck on.  I feel better than I did a year ago, fer sure–but I still lack the actual physical ability to do much more than dress myself and type blogs.  I try to push and keep doing because I am very aware of how easily muscle tone goes (and when you have almost none to begin with…).  But pushing just wears me out and makes me hurt more so it’s not really positive reinforcement when I do something and then have to rest for 2 or 3 days to recuperate.  I admit to becoming a bit nervous at the thought of my Vicodin running out because the free clinic will not, does not, prescribe narcotics.  And I don’t know if my (former) PCP will renew the script if I ask the pharmacy to refill it and call him for authorization.

There you have it…the limbo that is my life, the eternal waiting room with outdated magazines as my only choice for reading.  The weather has matched my mood, gray and almost rainy.  I need some sunshine…and I am counting on the doctor’s words that I will have some answer about SSDI in about a month–and since we think that they are processing our applications together, as a family thing, hopefully Beloved’s will also be answered–and in the positive, so we don’t have to drag through an appeals process.  Fingers crossed and looking for all the 4 leaf clovers I can find.  It’s been nice talking with you, will let you know when things change.  Or when it’s time to bitch about no change again.

Namaste!

A Lull in the Holidays

So Christmas has come and gone already.  I’m not really sure where December itself has mostly disappeared to…I know that we spent a lot of time getting paperwork to the requesting company or governmental department.  I also managed to work up an abscessed tooth, so ended up at the free clinic in Fauquier County.  It wasn’t what I was expecting–no overt “poor”-ness, the staff was amazingly kind and helpful (and they are all volunteers).  As they took my health history, they of course asked for medications I’m on–and the first question out of the nurse’s mouth as I began to list them was “Do you need any refills?”  Not yet, but that’s something I’ll be doing soon, as things are beginning to go low–and I need another doctor’s note to appeal the insurance company’s decision to stop paying Long Term Disability (LTD).  Since my health is “self-diagnosed” (no actual blood test or MRI/X-Ray to prove I have it) I have to KEEP proving I have it.  Like it’s just going to go away because they won’t pay beyond the end of the month.  I wish.

So let’s see…what has been going on?

Black Bear Bistro runs a weekly contest–Chef gives a particular kind of meat and then asks for recipes using that ingredient, serving it as one of the specials on Friday night.  The week before Christmas, he said “duck breast”.  I said, “brine in throwback Dr. Pepper and then smoke, serve it with a cranberry salsa and sauce it with a Dr. Pepper/bourbon reduction”.  He said OH YEAH! And I won the contest that week–and the prize?  Getting my recipe made up as dinner for free.  Needless to say, we went to BBB and had it.  Apparently it was very popular that evening.  I know that when they brought mine to me, a man sitting nearby said, “Mmmm what is that?” and then he ordered it.  And it was amazing.  I don’t know what kind of a contract Chef made with the smoke demons, but anything that man makes that comes off the smoker is just beyond words.  Moist, tender, smoky….and I like smoked foods, so I’m a sucker for anything he cooks that way.  (Note: if you like ribs, get the half rack.  It comes and you can just pull the bones out, like playing Jenga–and when you’re done, the HALF rack leaves a pile of meat about the mass of a softball–it’s at least 2 cups of meat. NOM!)

And then we hit the holidays…

We went to Beloved’s parents’ house on Christmas Eve, and Ri and Froggy (and my son, BB!) met us there for the Polish custom of “vigil”.  It’s a tradition where you begin about 6 pm (we started earlier to accommodate Froggy’s 9 pm bedtime) and then eat until midnight when everyone goes to Mass.  MIL made a special (Polish) mushroom soup, and we had pierogies–about 4 different kinds.  So we ate, and ate well.  No one went to Mass, but Beloved and I did spend the night to be there for the Christmas festivities in the morning.

We obviously didn’t have money for presents, but I made 3 kinds of candied nuts and some peppermint bark as a sort of gift.  I made Buttered Rum Almonds, Toffee Pistachios and Ginger Cashew Toffee.  All three were very popular, and MIL ate most of the cashews.  I think FIL like the almonds and the pistachios, so that works out well.  I made enough of the peppermint bark that there was some still at home for Beloved, who has nommed it all down.

Since his parents have been helping us so profoundly the past 4 months, they had warned that it would be a “small” Christmas.  Well, if it was their idea of small, I’d be completely overwhelmed to see what a big one would be.  I had given them a list of gift ideas, links to things on Amazon that I liked…I think they bought almost all of them.  Beloved had also given his list, but included some things that he thought I would like–which they also got.  And we both got gift cards with a generous amount on them.  They gave both of us a Kindle Paperwhite, and it’s wonderful.  I am really enjoying it.  Beloved gave his (old) Kindle to his father and I gave my old one to his sister.  So 4 people got Kindles that day–and his mother was not unhappy because she got her iPod, HAHA! So my haul for the day was 4 shirts, a cotton terry bathrobe (long in length and with a hood, used for actually drying myself off after a shower); a ceramic santoku knife, a couple of specialty chocolate bars (one with chilis and cherries, the other with pieces of ginger), 2 gift cards, a USB Nintendo 64 controller/game pad so that I can play N64 on my computer (and I’m using the heck out of it, playing Ocarina of Time); a framed picture of one his sister’s costume designs that she says “got her into graduate school”.  She gave a different one to each of us, so Beloved and I have to figure out where to hang our two pictures.  And of course, I got the Paperwhite.  WAY more than I expected, WAY more than they should have done–I was totally prepared not to get any gifts at all.  So to get that much was overwhelming.

MIL made a turkey dinner since the sister missed Thanksgiving with us, so we ate that Christmas evening and stayed another night there.  Wednesday, we took said sister and all our booty and headed home.  It was 24 hours of doing nothing, hanging out, reading our new Kindles or in Sis’s case, her new book (the first of the “Hunger Games”–she got the trilogy).  We did go out for Mexican food for dinner, but other than that, we spent our time being complete couch potatoes.   M- & FIL came out to our house to pick her up early Thursday evening.  We made dinner out of the turkey dinner leftovers MIL had sent home with us.  Friday, we ran errands in Warrenton–dropping off the bank statements for Social Services, faxing the lawyer the SSA paperwork I still have to fill out and send back, depositing the last LTD check in the bank and getting the rent check.

Between being out of our own home for 3 days and then having Sis over (while great to see her, and pleasant to be able to offer her the chance to de-stress) and then running errands, we were “done wore out”, as they say. Saturday and Sunday have been sent doing as little as possible, sleeping and playing on the computer.  We both need it–and the weather changed, so I was in bad pain for Friday and Saturday.  With the help of my Beloved, who analyzes everything, we managed to abort a migraine yesterday for me–but he insisted I take a muscle relaxer and they tend to make me…high.  So I made sure I did not do any driving!  LOL

It looks like we will have a quiet, just the two of us kind of New Year’s.  This year has gone by in a blur–and not necessarily because it was going that fast, but because I was so “out of it” for great portions of time.  Don’t remember much of February or March… When you don’t have a schedule, when you’re not having to go to work, it’s very easy for the days to slip by, one after another and then it’s a week gone, then a month and before you know it…seasons change and you have no idea what happened the past 60 days.  It’s part of the reason I am very careful to check the bottom left corner of my computer screen–time, day of the week and the date prominently displayed.  Or I’d completely lose track of “when” it is.

Of course we had visits from Ri and Froggy, since they got here the first week of December.  Froggy is 14 months old, thinking about walking but crawling very well.  He’s a happy, easy going child, like his father was—and seems to remember us (fondly) each time we see him.  Skype has paid off!  Now if I could just get my Lizard to install it so I can see the EG once in a while.  On the other hand, having a mobile baby here meant a certain amount of rearrangement to child-proof and protect the technology from little fingers.  That has had the unexpected benefit of opening up more space and making the main room feel larger.  I suspect that when we are completely done, and things are where we want them, we have the furniture that we want, etc… it’s going to be unique and very different from anything I’ve ever lived in before.

We already have the bed in the living room–and super smart engineer-minded Beloved made the point that we need walk space all the way around it, so why not put it down by the patio door, where we also have to have walk space in the same pattern?  We regain about 65 square feet of usable space that way.  Might not seem like a lot, but when you’re only talking about a 13 by 24 room, you’ll take all the usable space you can get!  That also puts our desks down at the end with the windows, no one is sitting in the pathway to the patio, and we can arrange our desks together better than if they were across the room from each other.  (As they would have been with the bed in its current position.)  Now if we could just get the boxes sorted and taken care of…

Still working on the hellhole of a kitchen.  I am running dishes through a dishwasher that needs replacing since it doesn’t really work the way it’s supposed to.  So it gets clean what it gets clean, the rest I try again and then I’ll hand wash.  It is reducing the amount of things to hand wash to a stack that’s not so completely overwhelming.  I know the knives and wooden things never go in the dishwasher, so I’m okay with doing those…but there are some things that just will NOT come clean in the machine and I’m going to have to do them manually.  Sigh.  I HATE to wash dishes.  Really HATE.  I’d rather do almost anything instead of washing them, so it’s VERY easy to find something else to do and let them go another day.  Did I mention that I’ve got a bit of problem keeping track of time?  Can’t put it off any longer, but doing it in clumps of energy rather than making myself insanely in pain doing it all at once.  And I’m rediscovering counter tops….

Also trying to do more cooking.  We had eggs, sausage and whomp biscuits (canned) for breakfast yesterday; dinner was (premade) Jamaican Jerk chicken breast and sweet potatoes (Beloved also had some white potatoes, mashed up).  It’s quinoa and sausage for breakfast today, and I’ve pulled a marinated in mesquite pork loin out of the freezer to thaw.  Not sure if I’m actually going to roast it, or just make BBQ sauce and braise it (boil it in the sauce, basically) and make pulled pork.  If I do, I’ll get Beloved to make some rice to go with it.  We need to go grocery shopping soon…but not today.  I expect the stores to be busy today with people preparing for tonight…

I guess that’s about it for now.  Have a safe and Happy New Year this evening–do not drink and drive!!  And may your New Year be joyous and blessed!

Namaste!

Thank Goodness for Everything

It’s that time of year again.  The air is crisp, the trees are showing off their autumn colors, football is in full swing and Turkey Day is upon us.  It’s the one time of year that so many people remember to be thankful…oblivious to the need to be thankful all year round.  Oh well.

What am I thankful for?  Every day that I wake up breathing.  My granddaughter, sitting on my lap and talking to me about Elmo.  My deeply and dearly Beloved, bringing me white chocolate peppermint kettle corn (at Wegman’s, OMG good) and a cinnamon pretzel because he knows I like them.  A roof over my head and food in mah belly.  A computer that lets me connect with my family and friends, and make new friends.  And play endless hours of mindless games when I cannot do anything else.  The ocean.  The sunset.  (I don’t see sunrises, I’ve heard that they can be just as magnificent.)  Water when I’m thirsty.  Wine when I’m with friends.  Black Bear Bistro.  My purple PT Cruiser.  The quiet stillness of a forest clearing, carpeted in pine needles and glowing green.  Fireworks.  Hot tea.  My children and the fact that they are my friends as well.  My children’s significant others.  The beauty of the first snowfall and the fact that I can see it from inside of a warm house.  Rocks.  Technology.  That Mr. Obama is our President and has four more years of bringing us together as a nation.  That women voted and made their voices heard.  Froggy.  The generosity of strangers.  Life.

We have so much to be thankful for, Beloved and I.  We’ve received letters stating that we applied for SSDI.  We knew that, but everyone wants a copy of that letter.  Mine actually went out to some place in West VA, to be sent to me through the kindness of the poor person who had it tucked in with their correspondence from SSA.  We have a signed lease, which means a secure place to live for at least another year.  We’ve gotten the paperwork to fill out for HIS Long Term Disability (fingers crossed that it will be approved, it means Mo’Money and that’s always good).

We haven’t been very good about moving forward with our plan to simplify things and move them all around.  We did get rid of our large microwave, trading it to his mother for her little one.  “Are you sure?”  Oh yes, yes we are.  Take it and heat things up in good health and with our best wishes.  I’ve got the big cabinets almost emptied of stuff so that we can dismantle them and put smaller, more usable things in their place in the kitchen.  And we may not have to drive to IKEA for that kitchen cart–our Target has something suitable, with a folding shelf that makes it into a breakfast bar or adds work space if needed.  We borrowed a dolly cart from his dad and hopefully, when our friend with the muscles comes over this week, she will be willing to move some things for us.

So Thursday is Thanksgiving and I am responsible for the star of the show–I am cooking the turkey.  Well, first, I am brining the turkey, using a much altered version of Alton Brown’s brining recipe.  He uses vegetable stock and water.  I am going to brine my Tom in Dr. Pepper (and water).  The throw back version, made with real sugar.  Did you know that Dr. Pepper has like 26 different and distinct flavors in it?  So Tom will swim in Dr. Pepper, pickling spices, sugar and salt and ice.  It’s called osmosis and when he’s done swimming, he will be a most moist and flavorful bird.  And we’re just beginning.

On Thursday, I will weave a magical blanket for Tom out of…BACON!  YES!  A bacon blanket, to cover his turkeymanboobs.  Then, I will wrap his tender trusting legs in more bacon.  I will not wrap his wings in bacon because I will tuck them up behind his neck….  I might carefully powder him just ever so slightly with Old Bay spice, since everyone loves an Old Bay Spice TurkeyMan.  I will lovingly insert aromatic vegetables into the thoughtfully available cavity between his bacon-wrapped limbs.  And I shall follow the Kitchen God’s (Alton Brown’s) instructions for roasting: 15 minutes at 500 degrees, then 350 until the correct internal temperature is ALMOST reached.
(Because when you take him out of the oven, Tom continues to cook; take him out a few degrees below done and by the time you are ready to carve, he will have reached the exactly correct temperature and will NOT be overdone and inedible.)

And he shall sweat and simmer and gently roast, bathed in the slow gentle rendering of bacon fat.  His skin shall crisp and brown, the bacon will also crisp but the meat…shall be so sweet, so succulent and melt in the mouth tasty.  It will be like eating the food of the gods and we shall rejoice and be thankful for the generous bird, who gave his all, so that we could feast upon him.  And I’m also making cranberry SALSA to take along with Tom to the in-laws for the meal.  The recipe is actually on the back of the cranberry package…but basically it’s like any salsa, except that you substitute the cranberries for tomatoes.  I have sesame/flax chips to eat it with.  The rest of the meal is up to the MIL–she mentioned mashed potatoes, yams and pureed turnips.

Our friend of the muscles is bringing her daughter with her on Wednesday and if Mom has to work Thanksgiving, Daughter will be going with us to Beloved’s parents.  Could be interesting, but it’s always fun to have more people around.  Doctor’s appointment tomorrow, mandated by the damned but necessary paperwork for disability.  I have to be almost continually re-approved, to prove ongoing medical care.  This is going to get very expensive if I have to do it more than 3 or 4 times a year, since it’s about $200 to see him without insurance.  Sigh.

Thanksgiving.  Then 2 weeks later, the RainBat drives up from GA with my Froggy to spend the holidays.  She, bless her heart, has also promised to help move and organize.  We’ll get this done eventually, I hope.  Otherwise, I’m getting a snow shovel and just shit canning it all.  Then comes Yule/Christmas and the New Year and before you know it, it’s the end of the world.  Or at least the end of 2012.  I am a little concerned about the coincidence of Twinkies dying off just as this year comes to an end…but how did the Mayans know?

The change in weather has of course affected me.  The fibromyalgia is pretty much same as it ever was, same as it ever was.  (Talking Heads allusion)  I am clumsy and Beloved says it’s because I haven’t had the chiropractor put my hips back in alignment lately.  Ah well, that’s another doctor bill we can’t afford now.  (Well, ok, after the 30th.)  Incidentally, because fibro is a “self reported medical issue” (I don’t have a blood test result or MRI to prove that I have it), long term disability will last only 2 years.  Too bad the fibro will go on the rest of my life.  Slight discrepancy there.

So that’s about it for us now; paperwork, Thanksgiving, stirring our stuff around in the attempt to instill some order and simplicity to our lives.  May you be blessed with a wondrous feast, surrounded by family and friends or family that is friends; may you have the wisdom to see how much there is to be thankful for–and remember it more than just one day a year.  And may Dallas lose.  (I’m a long time Redskins fan, it’s an old habit.)

Namaste!

November’s Not so Bad…

Here’s the promised update.  FINALLY got my back check from Long Term Disability, so we have money in the bank again, thank the gods.  Will pay bills, buy some new clothes for Beloved and some winter-y clothes for me, too–sweatpants are going to be the de facto choice around here during the cold weather.

We will not be living in the car.  We are signing the new lease on Wednesday, staying in our nice little one bedroom apartment.  Rent went up $25, but it’s better than no place to live at all.  Quite a relief, I must say.  On the other hand, the thought of living in the very limited space of a car/RV has changed our priorities for the apartment.  We are getting rid of a lot of things–even Beloved wants to dispose of stuff I thought for sure he’d never let go of.  So it’s a case of sorting and selling where possible, thrift store delivery where it doesn’t sell (and no one we know wants it) and trash for everything else.  We’re working on a very open floor plan, with a rather astounding arrangement: our bedroom will be one end/corner of the living room, with my desk next to my side of the bed and his desk at the foot of the bed.  Bed and desks are all about the same height, so it will all be smooth and open from about hip high and up.  We will be able to see each other across the (uncrowded) room every enchanted day.  The bedroom will hold all the shite until we get it sorted and out, then it will become our “living room”–perhaps parlor is the better word.  There will be seating and a low table, a place for people to gather and conversate.  So to speak.

We have a piece of high quality plywood that is large enough for a twin (long) bed which we will buy a mattress for and using 2 by 12’s, create a day bed/meditation platform/guest bed in that room as well.  Our clothes will come out of the closet in there, which we can promptly fill with whatever needs storing but not necessarily immediate access, and put furniture in front of the doors.  Most of our clothes can be folded and put into plastic totes that will fit on the shelves in the “linen closet” that’s out in the main room–the shelves are fairly deep, so we can use decent size totes.  The few things I have that I want to keep on hangers can either be at one end of the bedroom closet, or one end of the *other* closet that’s also out in the living room.  In a way, we are trying to live in this apartment like it’s an RV.

The kitchen is also getting some serious overhauling.  The wonderful cabinet that Beloved had put together from bits and pieces that we owned will be going, because it takes up about 40% of the kitchen floor space.  We are trading our large microwave to his mother for her smaller one.  We only reheat in it and the large one is a waste of space.  We’re talking about some sort of wire basket/shelf arrangement on that wall (the only open one, opposite all of the cabinets/sink, etc) with a rolling work cart (he found one at IKEA that has a built in trash can shelf and a butcher block top, which makes it additional work space/counter space).  I have an empty cabinet because my daughter has taken our dish set as well as the utensils that go with it.  I love them–black and square, wanted them for years and was highly amused to discover those are the ones that Beloved had also yearned for.  We got them, but…reality of my disability is that they are too heavy for me to handle.  The dinner plates are too big to do proper portion control anyways.  The utensils were also a jointed lust, but again, large and heavy.  I’m very glad for the Lizard to have them–she can get rid of the “crap dishes” they had been using and I can visit them whenever I want.  So Beloved and I are using our titanium sporks, chopsticks–or I am using these teeny tiny spoons that are actually appetizer serving pieces–the bowl holds about 1/4 tsp–as a way to slow down my eating and help me lose weight by not over-eating.  I also have a varied selection of forks and spoons from thrift store, but figure I will find a small (16 piece) set of utensils to use for when we have guests over.  Probably something light and fun, like plastic purple handles…

I will have to really sort my kitchen stuff with an iron will and a complete lack of sentimentality, keep the stuff we are going to USE, really use.  And get rid of everything else, no matter how cute it is.  Of course, that’s true for a great deal of what we’ll be going through.  We must be brave!  But when you’ve really thought you were only going to be able to keep what would fit in a PT Cruiser (and two of you, which cuts down on personal packing space)… it is easier to be brave.  We may have to go through a weeding process several times to really get it down to manageable levels–which is to say, things in the closets but you don’t have to move 14 boxes to get something out and nothing out that does not serve an immediate, almost daily purpose.  I will have a few knick-knacks, but nothing like I did 20 years ago, when I had a whole 2000 square foot house to keep them in.  Less to keep track of, less to dust, less to have to care for–more freedom for other things.

Other things includes National Novel Writing Month, or as it’s known, “NaNoWriMo”–50k words in 30 days.  I am a bit behind, but figure I can catch up without too much trouble as long as I don’t let too many days pass without putting something down on paper (metaphorically speaking).  I have almost 6000 words already.  Beloved is also participating and I suspect has more words down than I do.  But this isn’t about who wins, it’s just being able to do it.  We wanted to do it two years ago and never got anywhere with it, and of course were too sick last year to even think about it.  Now we have nothing but time, so it should be a do-able task.  Just depends on how our focus is doing that day.

It’s good to have a solid source of income again, even if it fails to meet all of the bills–it will first and foremost pay the rent.  Everything else will get paid more or less as we can–some this month, some next and then switch off again.  And thank the gods for food stamps, which will cover most of our eating costs.  I still have to pay for things like paper towels and tp, but it’s a huge relief to know that we will have something to eat.  We are also trying to see if we can get Long Term Disability for Beloved since he paid for it, not his employer and it shouldn’t have the same riders (where “work stress” is not covered) and if they will approve him for that…well, life would look pretty good for us, as we wait for word from Social Security about our permanent disability status.  It would be nice to have enough money coming in to pay all our own bills again.

We’re now dealing with an interesting phenomenon–the relief of stress, the reduction of anxiety, causes some of the exact problems that stress and anxiety themselves cause.  Your body gets so used to running on the adrenaline high that when the adrenaline is not there, your body isn’t quite sure what to do.  We’re taking echinacea and lots of extra Vitamin C to avoid getting ill as our bodies flush out the toxins from stress/anxiety.  I’m hoping it will work, because it seems stupid that once everything is going well, you get sick as a dog and have to take to the bed for a couple of days, only getting up to (excuse me) shit your brains out.  Oh well, it’s not like we’d miss work.  We can’t call out!

So things are settling down and settling in for us–or at least it seems so.  We’re still in a bit of a holding pattern for the decision on SSDI, which keeps us from being completely comfortable–especially as Beloved has figured out that if we’re not approved by April (or at least, if he’s not), we are seriously screwed because there’s no money (this without his LTD, which I’m not sure he’s factored in or not).  What are people supposed to do while they wait for the bureaucrats to shuffle the papers around and make decisions about their lives?  You can’t work if you’re applying for permanent disability–because if you could work, you wouldn’t need it.  So even though both of us have been terminated, we cannot get money from unemployment–because we’d have to be actively seeking employment and we can’t do that and even hope for SSDI.  We can go homeless, starve and lose everything…hard to think about, but really, a true and distinct possibility if these decisions aren’t made in a timely manner–like within the next 3-6 months–not in the next 3-5 years.

We’re doing okay for the place we’re at and hoping that everything else will fall into the place it’s supposed to be as these things have.  So that’s where we are, and I’m going to stop here because my hands are beginning to hurt from the typing.  And it’s 2 am, about time to go to bed.  Got to get up in the morning and go vote!

Namaste!

 

You May Call it “Autumn” But at This Point, I Call it “Falling”

And the stress goes up, exponentially.

Beloved’s employer has officially ended their seven year relationship, but in a strange and random moment of altruism, are making his last day November 1st, so that he/we will have healthcare coverage until the 1st of December.  Not unexpected, just three months earlier than we had hoped for.

Got in touch with the Veterans Administration.  Why yes, we do housing vouchers–but there are so many requests that they are only giving them for certain categories, the highest being “the vet has been chronically homeless for a year”.  I prefer not to be in that category if I can help it.  And Section 8, when I tried applying 6-7 years ago had a 3 year waiting list–and has stopped taking names.  So there will be no governmental help with housing.

No voucher.  And we just received the friendly note from the landlord saying we’ve been here a year and they really like having us here, so please attach two recent pay stubs so that they can requalify us for another year.  I don’t think that my stub from January and Beloved’s from February will be adequate.  Depending on what kind of concession we can get from the manager–who has lost more and more power about local decisions ever since the complex was bought by one of those megalandlord corporations–it is totally conceivable that we will 1) not be given a new lease and 2) will have to move within 30 days.  Please tell me what other housing (that is not someone’s basement for rent) would now accept us.  We need to stay in Fauquier because that’s where all of our benefits are being processed.  If we move back up to Manassas, we stand a very good chance of not getting Social Services because the demand in PWC  is much higher and we don’t speak Spanish.  More important, we don’t want to move back to PWC.  Bealeton is our home, we love it out here.  We have begun to seriously talk about living out of the car and planning on how that would/could work.

Oddly enough, I think I’d prefer it.  It’s almost the ultimate Buddhist move, to give up the attachment to a building to live in.  Sort of makes me wish I had been driving a VW bus or some other large vehicle all this time, as the PT Cruiser is not known for its large, gracious bedroom space.  On the other hand, we are now also seriously considering an RV as a permanent home once we have money again and can actually choose how (and where) we live.  There is an almost mandatory simplicity to living in an RV–there’s a definitely FINITE amount of space, so the endless amassing of stuff is not possible.  And there is an almost mandatory neatness, because everything has a place and it stays there except for the time you are actually using it.  Smaller area makes it easier to clean than even a single bedroom apartment, and since most everything is behind doors, dusting is also easier.  Some of the RV’s we’ve been looking at actually have a central vacuum!  It would also allow us to travel and Beloved might actually get to meet my parents, assuming they stay alive long enough for us to reach the point we have this mythological RV.  It’s something to think about–and for now, offers us a sort of escape to play “what if” and “imagine we had this”.

Tried applying for veteran health benefits.  Of course they use last year’s income to determine eligibility.  Nope, I don’t qualify.  However, I can reapply in January, using the financial numbers for 2012, which were shit, and will probably be approved then.  So theoretically, the longest I may need to go to the free clinic will be 2-3 months.  Now I have no idea what we will do for Beloved if his application to SSDI is not approved before the end of the year.

We actually are going to the lawyer’s office on Monday to fill out a stack of papers for SSDI–they sent them to us.  It’s like having to take tests to enter college.  We have three different “forms” (I use that term loosely since each “form” is about 10-12 pages) to fill out: disability and daily activities of living, pain assessment/description and work history.  They want me to go back 15 years and describe my job (HOW I worked: sitting, standing, lifting, etc) which means we almost get into the grey area of employment known as “stay at home mom”.  I think I may just miss that and get to start with my thrilling career at Wendy’s (where I worked while going to school to become a nurse’s aide).  How do I explain that I have had undiagnosed fibromyalgia since I was in high school and that every job I worked had some level of pain or limited ability that required work-arounds that I figured out without realizing I had this disease?  And that only my (relative) youth made being a nurse’s aide possible–and within 5 years I knew that I had to quit because of the problems it was causing me physically even more than the emotional toll it also took.  (I worked with the geriatric population; in 3 years at the one nursing home I worked at, we had 50 deaths.  Not shocking, just inevitable but still…)

Tuesday is our last visit with our PCP–who Beloved has been going to for 10 years–but he doesn’t take Medicare/Medicaid and so once we don’t have insurance, we can’t afford him.  And once we’re on SSDI, M/M IS our insurance.  Time to find a new doctor, I’m afraid.  We are hoping that he can (lawfully and legally, of course) issue prescriptions that will carry us for a while, especially me.  My two fibro meds cost $120 every 90 days.  And frankly, I’m scared to not have them because I don’t want to go back to being a sad little ball of pain sitting in a chair not doing anything like I was last February.  I guess I could live on Vicodin (which is cheap; go figure that the narcotics are cheap and the useful, specific drugs are not) but I might not get much more done than if I wasn’t…  Thank the gods for the free clinics in the area.  Goodness knows we have lots of time to be able to sit and wait for our turn.

Alternatively: we have started seriously upping our supplements, especially niacin (B3) and Vitamin C and it makes a difference.  Enough of one in my dear that his MOTHER has started taking them as well.  He has already begun backing off some of his ancillary meds because the vitamins and supplements take care of the symptoms so well he does not need…his blood pressure med.  His gout med.  His PAIN med.  (He has rotten knees and a torn up ankle; they still can hurt, but he can dose at need rather than maintenance).  While I feel better mentally with them, I am still having pain so I may always need some sort of pain relief; the nature of the beast of fibro, I suspect.  I would suggest the documentary, “Food Matters”, available on Netflix streaming, which explains all of that.  I’m not selling anything, just saying that it works for us and might work for you.  Stress releases adrenalin, which completely flushes your body of Vitamin C.  So you’re stressed AND sick all the time?  Try mega doses of C.  Niacin is a mood stabilizer, helps with cholesterol and blood pressure, among other things.

We have been told not to take vitamins in mega doses, that we might die…by doctors who had only a vested interest in prescribing the pill du jour to get their kickback from the pharmaceutical companies–who also do not want you taking vitamins because then what can they sell you?  When in fact, vitamins are more helpful.  Even Hippocrates (he of the Oath) said, “Let food be thy medicine”.  If you eat right, get the best nutrients in your food and supplement them where you need to, you can be healthier than our modern industrial medical complex would have you believe.  Modern medicine is NOT about healing.  It’s about treating.  Which is a HUGE difference.  But oh so much more profitable.  And if there’s profit to be made, then the general public is going to be fucked straight up the ass; lied to, manipulated, prescribed to and generally cut out of participating actively and as an informed partner in their own healthcare–by doctors who (mostly) have no interest in helping them get well but in giving them the most expensive (and frequently unnecessary) treatments they can get away with.

Anyway, off my soapbox and back to my own life.   With all of the stress, I am having to take extra doses of clonazepam (anti-anxiety) which makes me sleepy, so at least I’m getting nice long naps.  I also carry stress in mah belly (witness a year and half on GERD medication the last um year and a half I lived with the ex), so I’m back on ranatadine (Zantac) and Tums.  Don’t feel like eating which gets me in trouble with the Beloved Bear who insists that I must.  He’s right, but when you’re this nauseous and money’s limited, what’s the point in eating something that you’re probably just going to throw right back up anyways?  I also have a strange craving for soup these days, dunno why.  Whatever it is, when I do eat it, it is most satisfying.  I don’t really consider it a comfort food, so the desire is even more incomprehensible.

On the lighter side of life, he and I went last night out to Udvar-Hazy NASM for a lecture by my daughter-in-love’s grandfather.  Dino is going to be 91 his next birthday and is still sharp as a tack.  And incidentally, he was a photo recon interpreter during the 50’s and 60’s, including the infamous Bay of Pigs problem we had with Cuba.  It’s been 50 years and they’ve de-classified a lot of the photos, so he gave a very interesting and informative talk about how all of that happened, what the interpreters look for, making picture boards to brief the President.  D-i-l’s mom had posted that it was going to happen, and the tickets were free–and I knew that Beloved would be fascinated.  So I signed us up immediately, which was good since it was, as they say, a sold out house.  Nice change of pace for us, a chance to be out of the house–and we had enough time before the lecture to walk around a little bit, especially to see the space shuttle Discovery in its new home.  Always fun to see the SR-71, which is one of my favorite planes and still one of the fastest badass spy planes ever.

Our dinner party last weekend went very well.  Not quite the menu I had told you about…we started with cranberry salsa (spicy, to have with the cider), then had the fondue (butterkase/red wax gouda) and apples.  The peanut soup was a major hit–I used the Williamsburg recipe as my starting place, but made a sauce that had more of a Laotian kick (tamarind, lime, chili oil, ginger) and was the perfect accompaniment.  Then I had a “complimentary”–a small taste of something that wasn’t on the menu: fresh squeezed gala apple juice mixed with Bacardi and frozen into a sherbet.  That was VERY popular!  Then the actual dinner was beautiful pork chops, butterflied just enough to stuff with a mixture of gala apple pulp (from the previously fresh-squeezed juice), pumpkin seeds, more apples chunks, garlic, fresh thyme, matzo meal (as a binder), an egg.  Rubbed with a South African smoked herb blend, seared and then put into a slow oven.  I also made white and red quinoa (has a texture similar to couscous), served with butter, salt and pepper (also very popular, even though being something new for almost all the attendees) and then made haricot verts (french green beans) “chowed” (stir fried) in a generous amount of butter with a finishing drizzle of balsamic vinegar.  Dessert…ah dessert.  Not a custard, not a pie.  I cut apples into chunks, broke nuts into pieces and then added raisins–and we soaked them in Captain Morgan’s Private Reserve all day.  Then served it up in wine glasses with angel food cake chunks and a little splash of organic cream.  And they ate that up as well!  I was very pleased, although very tired–ended up resting most of Sunday and Monday but considered the cost worth it.

Nothing particularly major on the social horizon over these next couple of weeks, which could be a mixed blessing.  No obligations, but no distractions either.  I can only live one day at a time, making the most of each moment as it occurs and hope for the best in the long run–which has always been the outcome up to this time.  Any good thoughts or positive energy you’d like to send would be appreciated.

Oh, I did hear from the agent handling my long term disability claim, says that it’s at the medical / decision making section and as soon as they have an answer, she will get it reviewed by her manager and we will hopefully (fingers crossed) have an answer (YES answer please!!) by the end of next week.  Makes it a little close for a check this month but it could work out.  I am hoping it will work out.  Otherwise, I’m not real sure where we will get rent from.  Gods bless my father-in-law, who has paid the utilities and my car up to date, so we are not in arrears for those important bills.  It will work out, it always does and I must continue to believe that or there’s no point in living.  And I sort of like being with my Beloved, so…

That brings us up to date.  I will try to post the big events like being able to stay in the apartment or getting my money for the long term disability claim as they happen.  Hold us in your thoughts, dear people…good thoughts, positive thoughts, an open fluid gliding onto the path we’re supposed to be on and the ability to accept that path, whatever it may be.  One minute at a time, we live our life.

Namaste!