Road Trip to Redding: The Return Home

Welcome back, gentle reader.

The wheelchair-able vehicle showed up at 12 noon, on Tuesday the 31st. We loaded up and headed East. I swear to the gods that POS had no shocks and certainly had NO padding on the seats. I tried all three seats in the back (since Beloved got the shotgun seat) and I couldn’t say that this was too soft, this was too hard, this was just right. They were all too hard and nothing was just right.

Have I mentioned that Redding is East of Eureka, through the mountains? It is, and with all that “going through the mountains” holds. The driver was obviously not real familiar with the road and seemed surprised at the “30 mph, 270 degree” turns. The various zig-zags also apparently startled him. How was the ride? Well, it was just like riding a not-too-well trained horse…I had to lean left and lean right and brace myself for almost every turn.

But wait! There’s MORE! And it only gets better! Highway 299 is undergoing a long term construction project to widen the road and make it safer where they have rock falls of a somewhat frequent nature. I knew this from examining Google Maps. This was also a shock to the driver (and to the company –“Access on Time” — who hired him) since neither of them thought about leaving a bit early to make up for time spent sitting on the road, waiting for the one lane road to be in our favor.

If you have to stop for 5 – 10 minutes before being able to continue upon your trek, no big deal, right? What if you have to do that 5-7 times? That adds up. What had been advertised as a 3 hour tour ended up being 4 hours of hell. And since my appointment with the doctor had an arrival time of 3:15 to complete paperwork and prepare for the actual examination at 4:00 … that meant that I entered the office at 4:15. Oops. Thankfully the only comments made pursuant to my lateness was concern that something had happened to us. (Even the driver’s company had called, looking for him.) But enough of that bad memory.

The doctor’s staff was kind and efficient. I had my blood pressure taken (a bit high, but who could blame me with a pain level of about 8 and the anxiety of the visit itself?), temperature measured and I got weighed. Oh happiness–somewhere in the 2 months since my last visit to the VA clinic, I lost 10 pounds. I can only hope it doesn’t pull a Lassie on me and travel from the clinic back to me!

I got put into the exam room and waited for the doctor–a penance happily accepted as my due for being late enough that almost anywhere else I’d have been told to reschedule. He came in and we began the evaluation. He hit me with a hammer, which felt like being hit with a hammer even though it was just the reflex tester. We talked about when my pain started (in 1975, as I so facetiously put on the form I gave them) and how it manifests. We talked about what I can–and cannot do. He poked and prodded, had me demonstrate a knowledge of where my body parts, in this case hands, were in space without being able to see them.

He also inquired quite closely about my employment and how long it had been since I had worked. We finally worked our way back to the starting point for his questions: he said, and I quote, “So the company is trying to not have to pay you something?”. And I replied, “Oh yes. It’s the long term disability insurance company trying not to pay me disability pay” … which was what I thought the premiums paid to that company were for. Silly me. He really did take an hour to make his evaluation–and had apparently really gone through the paperwork I had brought–a 2 inch tall stack of paper, not terribly impressive but still a lot to have leafed through. Makes me wonder if he has photographic memory.

He thanked me and I was turned loose–but I do have to say, that comment about the company not wanting to pay out something…gives me some hope that he will tell them there is no doubt about my being disabled. He had touched about 8 of the trigger points which I had jerked back and then begged not to be touched…says he, “Oh you definitely have multiple triggers–and you cannot fake triggers.” So I am not faking being disabled…really? This is what I’ve been trying to tell the LTD insurance company for almost 3 years.

It was a real relief to come out of his office. Regardless of his evaluation, whatever he tells the company…my part in this hellacious process is done. I have done all that I can, produced all the doctor’s notes and lab reports to back up my assertion that I am, indeed and so help me all the gods, disabled. The decision, good or bad (and of course, I am hoping for good!), is now out of my hands–and this will be the absolute ultimate decision. No appeals, no repeals, no other line of inquiry to follow up. So there is a definite loss of anxiety about this. There’s still some for the decision itself–but of course!–but I cannot do anything more to convince this company of my real physical condition. To say nothing of the mental condition…

So I come out of the doctor’s office to find our transportation is on site (I didn’t need to call and request it) and we get into another wheelchair-ready vehicle…and the seats are padded! Too bad it was only about a 15 minute drive to the hotel, but there we are. We stayed at the Win-River Casino and Hotel, because apparently it had the cheapest rooms in town. I am okay by that, since the hotel portion was only completed in 2014–so it’s not as old as our tenure here.

It’s (obviously) run by one of the tribes of The People; lots of Native art and colors used in the decorating. We were greeted by a porter, who was all smiles and helpfulness. Check-in was a breeze, and then up to the room. Nice room, lots of small amenities one does not expect to find in a “cheap” hotel. We had to walk through the casino to get to their “Elements” restaurant. I’d have to wear my earplugs to be able to play the games–too much noise, too many lights, too many people in one space. The one thing there wasn’t? Smoking. The WHOLE place is NO smoking allowed. So there went my chance to go back to the room smelling like an ashtray.

The restaurant was separated by a well-designed and attractive half-wall (well, almost 3/4, but you know what I mean), so the noise and lights were really just a faint background intrusion. I could hear the “Jackpot!” buzzers when they went off…but otherwise, I could just block it all out by not looking out beyond that attractive wall. We had looked at the menu online and Beloved’s parents had spotted us money for food (the one thing we paid for on this medical journey), so we tried several things. He had their buffalo chili, declared it good; we got the smoked trout spread appetizer which was nice. I had a cup of the enchilada soup, also very good. For dinner he got a buffalo burger, topped with pastrami and horseradish cheddar cheese. I got fish’n’chips. I had a glass of the house Chardonnay with dinner which was so good, I took a glass to go when we headed back up to our room.

(BTW, my friend is a real oenophile and I wish he had been there because we could have gotten a bottle of La Crema for almost $20 less than he paid in NoVA. The liquor prices are lower because The Peoples do not pay all those nasty taxes!)

We lounged for a little while, I drank my glass of “to go” wine and then we fell into bed. The only really bad part about the hotel was their beds…ack. Neither of us slept very well and my bed had a decided squeak, loud enough to stir me from sleep every time I moved. Sigh. I guess that’s what you get for a night’s free stay!

Up in the morning, Beloved took advantage of a shower that is larger than our 31″ phone booth shower stall. I began gathering stuff up and it was a good thing we were as far in our preparations to leave as we were. At 10 am, the front desk called with our transportation back to Eureka; the itinerary I had said pick-up time would be 11 am. Oh dear. Better quality wheelchair van; same company as the good ride from the doctor’s office–and they are considering expanding into Eureka, which I would love. Older driver, who makes that particular run about 5 or 6 times per month, so he was very familiar with the road and managed to “straighten out” some of the worst curves. The ride was very different going home…

I have to tell you about this driver: old, white male. Obviously gets his news and other personal stances on topics from Fox. We tread dangerously onto thin ice with discussion about the ACA, “Easterners don’t like guns” and the such like. Since we were trapped in this hurtling vehicle, which he controlled…we just politely agreed and then changed the subject. He did have a lot of incidental information about the route itself, which was cool. He could name the various rivers and mountain ranges we were going past. Beloved got to see some of the really tall Rockies, complete with snow on top! You just can’t get a good perspective on the mountains without actually being in them and realizing that what you thought was about 100 feet is more like a 1000.

The one unabashed compliment I’d have to pay this driver was this: he had the most incredible, best use of side hair, comb-over I have ever, ever seen! The hair strands were about 6-8 inches long and most artfully trained up over the bald pate in curls and swirls and hairsprayed into an inch of their lives, giving an incredible illusion of a full head of hair. The only reason I got to looking closely was his repeated fluffing and checking the location of the illusion he was perpetrating.

The one thing I’d use to describe his overall personality would be this: he told us that he and his wife had bought a car–a Corvette. He had a picture of it on his phone, which he showed us. He proudly told us that he had put on an additional $17,000 in frou-frou additions, like a special paint job, “wings” instead of steering wheel, and he showed off the electronic key–which has a “real” key hidden within to get into the trunk. As Beloved pointed out  to me later, that type of key makes him extremely attractive to hackers who would like to take a Corvette for a spin. I felt vaguely unhappy with this confession of car buying until I realized that it was not just buying a car. It was buying a $40,000 car, adding $17,000 of bullshit accessories–so a vehicle that was worth almost $60,000. That only seats TWO people. That has naught of any storage type space, so it can’t carry cargo, not even an overnight case. And since he admitted that when he drives the wheelchair van, he stays in the fast lane and does 5 mph over the limit…I can only imagine how fast he takes that ostentatious consumerist vehicle when he’s driving it. If he can afford that kind of car, he probably can afford the speeding tickets.

And I am deeply offended by that kind of wasted spending–and the selfish desires behind it. Not just the money to pay for the car, and the money for accessories. It’s specifically designed to use fossil fuels; it emits pollution, it’s made of plastic and polymers, which is another use of fossil fuels. And the sheer amount of money it actually cost him? Could have been used for something much more generous, much more usable…donation to the local homeless shelter, a grant to the local primary school, given to the library to buy more books, upgrade their computers…the list is only limited by your imagination. I realize that it’s his money, he can buy whatever he wants…but I try to follow the concepts of Buddhism, which includes generosity without thought of recompense, giving to those who need when you have the means to do so. I consider that big of a compensation for small penis size…self-centered and completely unable to see the needs of people who are not part of “his” people, not part of Us, they are “Them” and as such, don’t need and worse, don’t deserve any relief from their troubles.

(Author’s note: the reference to small penis size is not meant to denigrate or in any way make fun of those who are not hung like a horse. The average vagina is 3-4 inches deep; the average penis is 5-6 inches. Plenty of happy action there. It’s trying to compensate with external and meaningless gestures, like buying the type of vehicle that is supposed to scream “Look at me, I am SOOOOOO manly”…which makes most woman automatically subtract 4 inches from estimated penis size…then balance that against what must be his bank account’s size. Fellas, take what Nature (or God, if you want to involve him in this discussion) gave you and learn how to actually use it–or how to compensate with other (oral or digital — meaning fingers, not electronics, you dirty minded perv) forms of pleasure for your partner.

Nobody NEEDS a Corvette. Trust me, I think they are some pretty awesome speed beasts. But my son pointed out the basic truth about ‘Vettes when he was high school: “Mom, how’s come only old guys own Corvettes?” Now talk to me about a 68-69 Chevelle and you will see me trying not to salivate. Love me some muscle cars…LOL.

Back to the trip: We got home about 2:30ish, making the actual travel time from our house to Redding at 4 hours, not 3. Got in the house, did some mild unpacking and then fell into bed for a good long nap. We are both exhibiting the physical signs of stress and anxiety relieved. My mental state is actually a bit clearer feeling than it has in a while–but I am at the verge of weeping. I’m finding my hand tremors are terrible–worse than ever. Beloved suggests I might be actually overdosing on the Gabapentin, so that is something I will follow up with my doctor whenever I actually get to see whomever is going to be my primary care physician. I have a list of things I want to talk about–some of it VA-specific, some of it just about me.

So now we settle back into our usual routine. Beloved has pool therapy set up for about twice a week through the end of April. I am waiting to find out if the VA will re-approve me for my therapy. Just getting into the nice warm pool and bobbing about without gravity on my back is wonderful. I’ll do that for 6 or 8 months and then we can talk about adding some small stretching or exercises. Maybe.

I made an appointment with my psychologist, who I haven’t seen since before Beloved’s hospital stay and his parents’ visit. Lots to report to the headshrinker! And Beloved’s birthday is in 23 days…and this is a “freak-out” milestone: he turns 40. BFD says I, from my vantage point of 53, going to be 54 years old in August. Guess I’d better find him some denture cream and a walker…LMAO.

So that’s what happened, and that’s my story–and I’m sticking to it. I ask you all to have lots of good thoughts and positive energy that the doctor in Redding will make a positive (for me) evaluation and I will start to get my LTD benefits again. (And that would make me really happy, as they owe me a butt-ton of back pay. We could sure a butt-ton of money!)

So peace out, talk to you all soon.

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Disabled or…UNable?

So here I am, at the end of week 3, still waiting for some word about my SSDI and whether I’ll get it or have to go to the appeals panel–which could take another couple of years. I began this Death March of Bataan through the application/appeal/adjudication process 3 years ago. I should have Long Term Disability (LTD) benefits still being paid, but the insurance company decided that there were 3 jobs I could do and kicked me off the small raft that had been helping us stay afloat in the sea of financial necessity. So here we are, living on Beloved’s SSDI and the incredible generosity of his parents who throw money our way with an embarrassingly often frequency.

Everything occurs for a reason. I believe this completely. It doesn’t mean that I have to like the occurrence. There is a lesson to be learned from all that happens in our lives, and I am learning a hard fought and almost overwhelming lesson this time around. It began with my diagnosis of fibromyalgia and has only gotten more and more intense as it goes on.

The doctor told me I had fibro and I arrogantly stated that I would not let my disease define me. First lesson: my disease defines me, defines my level of activity, defines almost every single thing I do or say in some fashion. I learned to accept help from other people (mostly–I still ignore this one on too regular a basis and still pay for it in pain).

I began to take medicines and we had to try various things before I settled into my current regime. I’m not going to list all of that here–but let’s just say that when I go to a new doctor, or to the ER, I have to list my meds and it’s always a show stopper and impresses the staff. I resent the fact that I take 4, FOUR, medications specifically addressing mental issues: depression, anxiety, mood and sleep (or the lack and poor quality thereof). I take narcotic pain killers, but I have a very limited supply because the Veterans Administration (VA) healthcare is concerned that I will become addicted or sell them on the street or something. I need about twice the amount I am taking now; I was supposed to have a pain management team that would work with medications and various therapies (massage, chiropractor, physical therapy in a nice warm pool, STIM and TENS therapies and etc) but I haven’t heard a peep out of that group since they insisted I go to SF for an MRI which was done in May. Four months later and there’s nothing more done.

(Side note: I seriously doubt my propensity for narcotic addiction since my VA care provider in Fredericksburg VA stopped my narcs COLD TURKEY. And I didn’t have withdrawal symptoms at all. So there!)

I have learned that I need support when I walk because I’m very unsteady on my feet. I have learned how to be a cook, instead of a chef–preparing meals that are simple and easy to make, with a minimum of preparation–no chopping lots of vegetables into pieces to stir fry, no complex recipes that require more than about 4 steps. For someone who was at the point of trying a new career as a personal chef…this hurts beyond words. I love to cook, I love the creativity of putting things together in a new way, I love the satisfaction of feeding people and having them enjoy the food. In many ways, I am a true “kitchen witch”, pouring myself into the food I prepare to make magical meals for friends and family. I am happy when I cook. And I can’t do it now.

I used to have nearly photographic memory, a prodigious ability to recall, great concentration and instinctive multitasking. Gone, gone, gone and gone. I have an enormous vocabulary–but I “lose” words in conversation and writing…you can’t tell that some of my blogs took HOURS because I would want to use a specific word, a word I know, and yet for the life of me, cannot access in the dusty, messy library of my mind. And I have to stop, let go of reaching for the word and sort of think around it, hoping to lure it back into use. Like intentionally ignoring a cat, waiting for it to come to you when it realizes that it is not your focal point. And it can take just as long–as anyone who’s ever had a cat can tell you.

I used to enjoy groups of people, parties, dinner out, all that social stuff. Now crowds terrify me–and I consider anything more than about 5 people to be a crowd. Going to a store or a restaurant becomes an exercise in NOT looking around me too much, not letting myself acknowledge just how many people there are within my line of sight. I focus on my shopping, or on my meal. I will sit with my back to the rest of the restaurant just to be able to do this. And it’s not that I’ve suddenly become phobic of another human being–one or two at a time is not a problem. It’s just the larger the number, the greater the impact, the faster I need to go home to my nearly solitary nest.

And for those of you with a chronic disease, you will understand what I mean when I say it’s not just the anxiety of being around people. It’s also the great amount of energy that being social requires. The interaction, the conversation, all the little things that make up our social lives, takes energy. And frankly, those with chronic illness are made aware very early on in their trip on this road that energy is the one thing you will never again have enough of, that you will often lack to the point of poor personal hygiene and eating carry out way too often. It takes energy to hide the pain, to be polite, to speak at any length. And when I say “hide the pain”, I do not mean that you cannot share the pain or how much you hurt but when that’s about all you can talk about…people start to avoid you. Most do not want to face such an obvious reminder of the fragility of the human body. Some cannot believe that it’s all that bad when in fact, it IS all that bad. And because you’re not “out and about”, your actual ability to hold a conversation that is equitable with the person you’re speaking with becomes impossible. They talk about going places, doing things, meeting people. We the chronically ill are hard pressed to suitably astound someone with the mere fact that we took a shower today–although for us, it’s quite an achievement. And when asked, “What did you do this weekend?”, we recoil at giving the answer of “Slept most of it.”–AGAIN. The things we fight for, the efforts we make to gain some semblance of a life…are the mundane, unmentioned activities of daily living for everyone else. Taking a shower, preparing a full meal, going to the grocery store. These are major accomplishments for us…and so trivial as to not even merit mentioning to the rest of the world.

Over the past 3 years, I have developed an evolving and greater definition of “disabled”. Dis-abled, as in “not able”. You’re willing, but you just can’t. And “unable”, which means not able as well, but at least to me, seems to carry the faint hint that it’s a voluntary decision. “I’m sorry, I’m unable to make it to the party.” However…I can use both terms in their purest sense of “not able”. Fibro causes a variety of disabilities and my physical condition makes me unable to do things. I have debilitating levels of pain, all the time. Pain has been my constant companion at some level, for all of my life. Lately, it demands most of my attention–and most of my energy trying to accommodate it and to live some sort of a worthwhile life in spite of it. Not a whine or seeking sympathy, just a matter of fact explanation of the worst symptom I have. Chronic fatigue, poor sleep, inflammatory bowel (and bladder) syndrome, depression, anxiety…the list goes on but pain tops it every time. It’s been in the “Top 40” (haha) longer than any other song. Gallows humor, but why not laugh at my problems, rather than singing dirges of doom and gloom all the time. I try very hard to not be the cranky, unpleasant sick person.

I had my SSDI adjudication 3 weeks ago. I went into the video conference room, dressed to carefully cover all of the tattoos, tongue ring removed, hair re-dyed a color I haven’t seen in 15 years–my (mostly) original natural color again. I answered questions, the judge talked, my lawyer talked, the vocational expert talked…the judge thanked us and left. I mostly saw the top of her head, as she did not make eye contact with me once the introductions were done. This may be her way of keeping aloof of emotional interference in her role as impartial arbiter of people’s fates…but it actually made me feel like a number, just another piece of paper, in her metrics for cases allowed versus denied. She gave no indication of which way mine would fall, just said that she would issue the decision. My lawyer says that she is known for this sort of passive-aggressive manifestation of power. I guess she does it to prove to everyone just how incredible a judge she is, weighing every case so very carefully…and it might be more impressive to me except that according to the SSA’s own rules, I should not have been denied upon my second appeal (the last step prior to this one) because I am old enough and cannot even do “light” work–which involves being able to lift 10 (maybe 20?) pounds…for at least 1/3 of an 8 hour shift. But someone else decided that just maybe I could, so…denied. And there I went, into the adjudication circle of Hell. (By the way: a gallon of milk or water weighs 8 pounds. That is now a two-handed lift for me and I cannot repeat it more than two times.)

I thought waiting for the adjudication was bad. I thought waiting for the adjudication without my LTD benefits was worse. Well, the worst thing of all is the wait, with no specific scheduled end time (like waiting for the hearing), for the decision. So much depends upon this coming to me in a very timely manner. I will appeal my LTD dismissal–and I only have 180 days to do so, which ends sometime in November–but if I can send the SSDI certification of disability, it’s pretty much a done deal and they will have to reinstate the benefits–until 2028, when I turn 67 and “retire”. It means the difference between SSDI and what the LTD benefits by themselves had been, which results in a net increase in our income of several hundred dollars a month. And while that may not seem like a lot, when you’re talking about a combined family income of about $3500-$4000 per month (or about $48,000 per year), that “several hundred dollars” additional is about 10% or so of the monthly checks. Helps provide for things like upgrades on technology and other “little” purchases that can mean the difference between a bearable life and a pleasant life.

Beloved is OCD. He’s OCD about numbers. Money is numbers. Need I tell you that he is practically frantic with worry and not knowing how the budget will work? His mental illness manifests in his emotions…and he’s the cranky sick person. My worry always hits my stomach. I’m not eating well, not at all. In fact, a great deal of the time, I’m not eating. That’s bad. And what had been barely managed pain is totally out of control, as I have hit a full blown fibro flare-up that makes me the crankier sick person. The bottoms of my feet hurt to walk on. It hurts to touch my skin, anywhere I touch. Which adds another aspect to the disease: I long for, starve for skin contact. I am a tactile person–or in laymen’s terms, a “touchy-feely” kind of gal. I want my husband to touch me (and it’s not about sex, you perverts!) and to pat, cuddle, stroke, scratch my back. And he knows that it hurts me, so he doesn’t…and that hurts me inside, even as I understand his reasoning–and I can’t really find fault with that decision. It’s not him, it’s me…he is trying to avoid inflicting more pain and my damned disease (double damned, triple damned) prevents me from being able to have anything resembling the normal intimacy of love and a committed relationship.

I am nearly frantic with worry…not just for me, but because this is also affecting him so deeply. I mean, I know that of course it would. It’s not just that it affects his standard of living, which it does, but that it affects ME, his chosen wife. So we’ve got this cycle of being concerned about the decision itself as well as the escalating damage it’s causing to each other. I half joke that by the time this judge does finally render a decision, I will be utterly and truly disabled, beyond what I had when I saw her. Three weeks ago. Dear gods, it seems like three months. And theoretically, we have from one to three more weeks of dangling in mid-air before we do get the decision. Everything else is on hold. There are things we want to do, once we know about the money which are having to wait until we have the numbers. I have my LTD benefits dangling with me, adding another fishing weight to the pounds of weights I already had. I’m holding on by a thread and I’m afraid it’s going to break before the decision is handed down. At which point, Beloved and I will need adjoining rooms in the local mental health hospital–and matching fancy white jackets that let us hug ourselves.

I’ve been trying to maintain my “#100happydays” (see the website) during this time and frankly, it’s just not working out very well. The original intent of the foundation was to get people to slow down and see what in their lives makes them feel happy–and to acknowledge it daily, for 100 days. Most people drop out because they don’t have the time to do it…sad commentary on our society. My problem is NOT time–it’s the one things I have endless amounts of. It’s that the current situation is so taxing to my mental and physical well-being that finding things I’m happy about is hard or inane. “I’m happy I took a shower.” Yeah, and so are the people around me.

Another area of my life that’s taking a serious hit is my ability to stay in touch with my family. I have to deal with a time difference of 2 or 3 hours, depending on whom I want to speak to in addition to working up the energy for that conversation. It’s not that I DON’T want to talk to them, it’s the fact that holding a phone to my head for an hour hurts my elbows (because I switch arms to avoid completely destroying one). One of the things I want to get “when the money comes in” is a hands free headset to plug into the house phone, so that I don’t have to hold it. In the meantime… And there’s the inescapable fact that I lose track of the time and the days…then the weeks. Time slips away from me and I just don’t realize how utterly long it’s been since I’ve talked to…my mother, my daughter, my son, etc.

Worse yet is that I caused unhappiness in my son’s household…my fault totally and my daughter-in-love felt that she needed to “unfriend” me on Facebook. Her right to do so and I understand why–but she is my main, almost sole, connection to the Froggy grandson. I owe her an enormous apology and want to do it when I can talk to her–but I lack the actual energy to deal with this now…so time slips by and the wound has not been addressed, nor forgiveness asked. Not for a lack of wanting to…but for the physical inability…disability?…for me to do it. Just trying to write it here makes me weepy, so I think I’ll let this go for now. Hopefully I can repair the damage I did and we can knit back a relationship–or I’ll pretty much never know what’s going on with that part of my family.

So that weighs on me, lurking there in the back of my head. To say that my life is NOT happy at this point seems melodramatic, but it’s a relative truth. And one of the most aggravating parts of this dangling is that once it is resolved, hopefully for the good, everything else will start up again. My whole life is teetering in balance, waiting for one woman’s decision–and that one woman is unreachable, impervious to my plight and holds the outcome merely as another number in her record, to show that she’s doing her job oh so wonderfully. This is as bad as being told your lab work came back with some seriously bad numbers, but you’ll have to wait a month or two before you can see the doctor to find out if you’re going to die or not. The anxiety and fear that both of those situations cause is…pretty damned large and leaves no room for any other activity because if you move, you’ll break that thread.

I have a disability. It makes me disabled. I am unable to work and I need to have SSDI benefits in order to pay for the things that are required to live. I am unable to alleviate my husband’s suffering because of my own suffering. I am unable to move on with my life, being able to make whatever necessary accommodation I must to deal with fibro. I am stuck in a holding pattern (like an airplane) and I am running out of fuel. Dire and dreadful, yes. But “it’s always darkest before the dawn” and “you know a thing by its opposite” so if it’s real dark now, when the light comes–and it will!–we will appreciate it even more. As a Buddhist, I strive for the Middle Path, for balance, and for a simple life. Doesn’t mean I give up everything I own and become an aesthete. A simple life, a minimalist life, is where you have everything you NEED and an appropriate amount of what you want, and a few of the things you wish for–and not all the “things” are tangible. Part of the Middle Path is the lack of attachment to things–again, not always meaning tangible things like cars or fur coats–but the losing the attachment to whatever holds you back, drags you down, makes you live an incomplete life. I have a disability. I am disabled. But I am NOT my disabilities and I am not attached to being disabled. It is a state of living, not a definition of who I am. I am me, just me. I happen to be disabled. It means no more and no less than being brown-eyed or having tattoos.

I share this with you all not because I’m looking for a pity party…but because I know that there are others out there who are also dealing with disabilities, with dark times. I would hope that you could find your own Middle Path, the way through and then out of the darkness–and I suggest that sharing gives each of us a little candle, glowing in the blackness like a beacon. Enough candles will destroy the darkness. I share mine with you, and hopefully light your candle so that you can see there is a way out. Namaste!

High Anxiety

So tomorrow is my adjudication hearing for Social Security Disability Insurance (SSDI). I started this paperwork labyrinth 3 YEARS ago; it was rejected twice, which puts it at the current level of requiring going before a judge and trying to explain just why it is I need permanent disability checks. Nerve-wracking hardly begins to describe it. For those of you considering going through the process, or those who have begun this long and winding road… one piece of advice I would sincerely offer, with the hopes that you will listen to me: get a lawyer! Find a good lawyer in your area that handles SS cases. The standard agreement is that they receive their fees out of the settlement, from 25% up to no more than $6000. (It was that both in VA and here, in CA)

They can help you fill out and submit the original forms (and the nearly identical updating information forms); they will follow up on your behalf and then tell you what you need to do to keep the process moving; they will gather your health files all in one place–and ALL of your health files, plus any other pertinent paperwork to your disability (workman’s compensation, etc). And should you also reach the point of having to go through adjudication, they go into the hearing with you, they will have prepared you to deal with describing your disability/ies to the judge in a way that is factual, accurate and yet hopefully sway the court to your side. Tell your lawyer the truth, the whole truth and nothing but the truth when you are establishing a client-attorney relationship. And listen to whatever your lawyer tells you about telling the judge–and how to tell the judge.

For example, I am not to tell the judge that I have fibromyalgia. I do, but that doesn’t really hold much water. On the other hand, if I can talk about the functional limitations I have (more than I care to admit), and that they are related to “what my doctor said was fibromyalgia, which seems to answer the question of what it is”, that’s a much better way to get my point across. I can indicate a willingness to work, except goshdarnit, my hands are painful and swollen, so I can’t type for more than about 2 or 3 hours at a time. I’m even willing to accept some other diagnosis although fibromyalgia seems to be the answer–but in the meantime, I am actually dealing with chronic fatigue (taking at least 1 and sometimes 2 naps a day) and chronic pain. I have a bulging disc in the L3 – L4 part of my spine that impinges on the nerves and causes a pain like a sword down my thigh. Because of that, I cannot stand or walk more than about 15-20 minutes at a go. Lifting a gallon of milk or water, which weights 8 pounds, is now a two-handed lift for me or I will drop it and I cannot do that lifting repeatedly.

I think you get the idea. So I have been working very hard on both preparing the functional answers for my condition as well as studiously avoiding focusing on the time ticking away to this dreaded/hoped for/scary / necessary/life-altering event tomorrow. We need so much for me to be approved; the paycheck would mean the difference between living on the edge here or living a pleasant life. And if we’d be on the edge here…means that if this was happening back in VA, we’d be living out of the car. Or cramped into someone’s extra bedroom, if we were to count upon the kindness of others–which is not a bad thing for a while, but not the way you want the rest of your life to go. Know what I mean?

Beloved is almost out of his mind with the anxiety. Money is numbers and numbers are his MAJOR OCD issue. He also has a inhuman drive to protect and care for me and this is not helping. The worst part is that neither he nor I can do a good godsdamned thing about it. Someone else is in control and we have NO idea which way the deal will go. So we’re both pretty heavily medicated for anxiety and will be through the hearing tomorrow. He cannot come into the actual room where it will take place (it’s video conferencing, so it’s a room with a screen on the wall and a table with two chairs facing that wall — and of course, the requisite technology for the actual hearing), so he will probably go do “something” else for the about 2 hours this should take. No idea what, but I hope that it will keep his mind occupied enough that he won’t be a frazzled basket of nerves.  That’s my job!

I have a football mouth guard that I’ve been wearing because I’ll realize I have a headache…why do I have…oh yeah, my jaws are clenched so hard that they ache, and it’s radiated up into the forehead. I can only imagine what my blood pressure is. I have been trying very studiously to find other things to do and whatever it takes to distract me. I’ve actually started playing “Star Wars: The Old Republic” as a way to do something a little more involved than the simple flash games I play. It’s like WoW, sort of…complex, lots of stuff to personalize, lots of stuff to keep track of… we’ll see how that works.

And I’m feeling really stupid and sad that I have somehow managed to miss contacting my children very much in the past oh 4-6 months. My mother has figured out that she needs to call me about every 6 weeks. It’s not that I’m avoiding any of them; it’s just that the time difference between me and them always catches me, and time here moves at a different rate, I swear to the gods. I think a week has gone by and it’s been more like a month. It doesn’t help that we don’t have a set schedule, so the only reason I know what day it is is because I have my computer time and date set up to also show the day. So aside from not being up to date with everyone, I just plain out haven’t talked to them in well, forever.

And I totally fucked up with my son and his wife…just so you know, it’s never a good idea to show up, out of the blue so to speak, and ask for money, no matter how small (or large) an amount you’re asking for. I should have known better but apparently didn’t. So they were pretty angry with me and I deserved it. I only hope that I can repair that particularly spectacular mistake because I don’t want them to stay angry with me, especially my daughter-in-love. Another reason for me to be getting SSDI, so that we don’t have to ask for help, which is humbling enough to make it difficult…and it’s really, really stupid to make that request the only time you contact someone, anyone. Guess I’m really, really stupid.

I miss both of my kids, their chosen loves and the grandbabies… it was part of the price we paid to move out here and I would tell you that it was the biggest price, the hardest price to pay. It’s the one area where I have to try not to second guess our decision to move and to have faith that we did the right thing–and hope that it will be proven to be such in the long run. I am hoping that my SSDI hearing will go well and that I will start getting a paycheck. I will also be able to slap my Long Term Disability insurance company (from premiums I paid when I was working, not associated with the SSA) and make them start paying me again. They will have to pay the difference between the SSDI check and what my LTD benefits through them paid each month until I turn 65–and that’s $200-300 a month. In addition to the SSDI check. If that all works out, I believe that the loss of anxiety about money will bring enormous relief to both me and Beloved–and will let my brain return to some semblance of its former glorious abilities! Which means that I can be much more proactive about phone calls and Skype sessions with my family, on a much more regular basis.

So I am making a list of things to do (that I’d like to do) WHEN I get my SSDI. (And I’ll beseech any gods that will listen. Poor Lord Ganesh, “Remover of Obstacles” is getting an earful, let me tell you!)
First and foremost, mend the fences that I so stupidly knocked down.
Secondly, truly get back into something creative. I want to draw, watercolor and charcoal pictures. Got the stuff to do it. Now I just need to “make it so”.
Third, spend more time blogging and less time playing on line. Games have their place, but should not be the primary activity for me. If I am not up to blogging, I’d like to try reading again. We haven’t made it to the local library and that’s something that needs to be rectified.
Fourth, figure out just how much handicrafts I can do–and do it. If I need to change up what kinds I’m doing, I am open to that. Crocheting is proving a little hard; I may have to go with those seriously big afghan hooks because I lack the fine motor control to work with thinner ones. Or get big fat knitting needles, same reason. Jewelry making is almost completely out for now, since that is a very fine motor task. But there’s got to be other things I can do that will feed the creative urge.
Fifth, get more involved in the world around me again. Maybe volunteer at the local shelter–and if not that, and what is really my first choice for a volunteer job, give some of my plenteous time at the local hospice. I have the background for it…
Sixth, join Beloved’s gaming world once he gets back into it–it means at least one night out per week, amongst people of our own kind, playing grown-up make believe. I can do that!

I’m tired of being isolated and as much as I love my husband, our dinner conversation is less than scintillating when we’ve nothing to talk about. “What did you do all day?” “The same thing you did.” I have to work with my recently acquired and seriously pain in the ass social anxiety, so I am not sure what we’ll end up doing that won’t trigger panic attacks. Guess we’ll find out.

So tomorrow looms over me like a tsunami (which is my personal nightmare image). Wednesday I go see my (new) PCP and have to get new scripts because with the change in providers, all the scripts I had for my much-needed meds…are gone off the VA medical site. Sigh. Friday, I get my eyes checked for the first time in about 3-4 years. Wahoo! Gonna talk about getting computer glasses, since that’s actually the most important level of correction I need. Saturday is my cake day, with nothing particular planned. Other than changing which age group I belong to…no big deal.

If you’re reading this before Monday and want to send some good vibes, I’d be happy to welcome them! I’ll try to update this in a timely manner, assuming I get a decision tomorrow–which may not happen and THAT waiting will be almost worse. This is not the final step before having to give up. If the hearing goes against me, I will go up to a Federal court for an appeal to that decision. And in the meantime, there’d be no money coming in… ACK. Try not to think about that. Think happy thoughts, Kitteh!!

Peace and blessings to you all!

It’s Not Easy Being Zen

I started this blog over 2 years ago. I had no idea when I began it that I’d be where I am at this point of my life: mentally, physically, spiritually. It’s been a rough and gritty road, with some sizable potholes. It’s also been a while since I actually wrote about what’s going on with me, fibromyalgia-wise. So let’s address that.

First, let me update you on my medications list, which is quite a feat to be able to recite the names, doses and such. Much longer than I’d like it to be, but I am thankful that every med seems to be doing what it’s supposed to and that makes life better. So let’s make a list of what, how much and what it’s for:

AM Meds:

One Gabapentin (Neurontin), 300 mg, for neuropathy; also acts as a mild anti-depressant
One Hydrochlorothiazide, 25 mg, for swelling; it’s a diuretic
Two Hydroxyzine Pamoate, 25 mg each, for anxiety; prescribed to be taken up to 4 times a day as needed
One Hydrocodone APAP, 5/325, for pain (aka Vicodin); prescribed to be taken twice a day for pain with an extra few for those really bad days when I need 3)
One Venlafaxine, 225 mg, 24 HR SA, for depression
One Lamotrigine, 25 mg, for mood stabilization

PM Meds:

Two Gabapentin (makes the daily total 900 MG; the two at night help with sleep)
Two Hydroxyzine Pamoate (also helps with sleep)
One Omeprazole20 MG for acid reflux/GERD
Two Trazodone, 50 mg per tablet, total is 100 mg; for sleep (specifically)
Two puffs, each nostril, Fluticasone, 50 mcg, for sinus and upper respiratory decongestant

And I have Clonazepam, 1 mg, as an “emergency” anti-anxiety, to be used as needed, but no more than one per day

Wow. Heckuva list. So let’s make a synopsis of what I’m taking all these chemicals for: I take two different medications for pain; I take two different medications for anxiety; I take one medication that is specifically for depression, but I have another that also has anti-depressive effects. I take one medication to help with the swelling in my feet and hands. I take one medication to keep me breathing (well, at least not as stopped up in the nose as I would be otherwise). And I take one medication for mood stabilization.

Let’s talk about that one for a moment. Lamotrigine is what my Beloved but bi-polar husband takes for his mental illness. He’s taking a way massive more amount than I am and it works well for him as long as everything else stays reasonably stable. He’s fortunate that in his being bi-polar, if things get out of whack, because the illness is brain chemistry, he can literally “reset” his emotions by taking a nap. (We all do that, did you know that? You reset your brain when you go to sleep. Probably because it runs on Windows 95, haha.)

So about a week after the Worst Thing happened (NO more LTD for me), I got a letter from the SSA with the date for my adjudication hearing with the judge. I have gotten a new lawyer, as the one in VA has formally relinquished the case–and waived her fee. I feel bad that she lost a lot of money on me and am very, very grateful for all that she did, for both of us. My new lawyer spoke to us for about half an hour, 45 minutes–and it was sort of an audition on my part, to see if he would take the case. He did, and seems very competent. I also figure that he wouldn’t take a case he thought he would lose.

[EDITED]

He did make a really good suggestion which is a better way to describe my disabilities, rather than just saying I have fibro. Frankly, that’s what my psychologist should tell me, but hey, I’ve only had one meeting with him and maybe he will talk with me about it. What I’m supposed to do is speak about what is currently disabling, in a functional (or in this case, non-functional) manner. This is going to be hard for me, because it basically is a list of all the things I cannot do, or cannot do without great pain or effort. I’m going to have to face up to the reality of my disability, which I have been kidding myself that I was doing, just by covering it with the word “fibromyalgia”.

My husband said to me, “You’re supposed to be a good Buddhist” and I replied, “I TRY to be a good Buddhist”. So I can use this as a chance for advancement on my spiritual path as well, if I can frame my life to be “in the moment”, which is very important to me. I believe in the NOW, each moment passing, never to be repeated, to try to live each moment to the fullest, with awareness and focus on that moment. (And then let go and move on to the next moment which has come.)

So here goes:

Hi, I’m Kate and I am disabled. I can no longer stand or walk for more than about 15 minutes without excruciating pain in my back and down my legs (sciatica); I also have neuropathy in my legs and arms. I have swelling and pain in my hands to the point where I am clumsy holding things and I have to be very careful with heavier objects or I will drop them. I cannot twist my hands to empty an ice tray without pain. While I am on the computer for most of my day, I have several different types of activities that I do which changes up how I am using my hands–I mouse for a while, I type for a while and I use a game controller to play computer games. I also stop and stretch my hands, or flex, then rub them, to ease the pain. I have both Irritable Bowel Syndrome and Irritable (Stress) Incontinence, which means when I have to go to the bathroom, I HAVE to go. I have very limited range of motion in my arms and can seldom lift them above my shoulders. Things put on higher shelves are no longer accessible. Pulling on clothing over my head is done by putting my arms in the sleeves and pulling everything up to the shoulders, then ducking my head into the neck hole. Activities of Daily Living (ADLs) are difficult for me; combing my hair is tiresome because it requires me to lift my hands to brush the length. I shower when I have the energy to deal with all of the bending and stooping, scrubbing and hair washing. I have stopped wearing a bra because I cannot put it on by myself. I have also stopped housecleaning for the most part, only dealing with dusting, sweeping, cleaning the bathroom and etc when the filth passes my point of being able to ignore it. And I still do it the way I have for the past 20 years–do about 20 minutes of cleaning, then sit and rest for a while, then do some more cleaning and repeat the pattern until the task is done. Or I’m in too much pain to continue.

I have depression because of my pain and the various occurrences related to my disability, such as losing the LTD disability benefits. I have contemplated suicide more than once and have thought about how I would do it. My most recent suicidal ideation (great term, huh?) was when I got the notification that I had lost those benefits. If the Pacific Ocean wasn’t so damned cold, I’d have just walked into it and kept going out to sea. Truth: I don’t want to be dead. I just want the pain to stop, I want the uncertainties about money and our lives to settle down. I want peace.

I have anxiety, duh. Problem is, it interferes with my life. I am developing social anxiety; I hate to be out in a crowd of more than about 8 people. Small crowd. And very ironic, since my life has been filled with people–I have spoken to large crowds, I was responsible for the local Pagan group back in VA, I had a weekly dinner date with my friends–and we could be as few as 3 and as many as 20. Now I begin to freak out if there’s more than about 3 or 4 people around me, like you would have at a dinner table. I often don’t really want to leave the house–not quite agoraphobic, but definitely not good. This limits me in so many ways–I have no friends here, just the wait staff of the various restaurants we go to, or the staff at the grocery store. But nobody that we say, hey, let’s get together.

I would attend services at Humboldt Unitarian Universalist Fellowship, but all too often, one or the other of us is not up to going. So neither goes. Lots of nice people–completely overwhelming to me. But probably our best chance to meet friends, people we can hang out with and do things with. Beloved wants to get back into his gaming (table top RPGs, with paper, pencils and dice; NOT D&D). If he does, I’d probably go along and play, if only to keep myself from becoming totally a recluse.

I can no longer play the piano. I cannot knit or crochet or do other fine motor crafts for more than the time to do one row of knitting or crochet, or about 20-ish minutes of fine motor work like making chainmaille or jewelry. These are all things I used to do. I can’t talk on the phone comfortably if I have to hold the receiver to my ear for more than 15 or 20 minutes. (Which means when my mother calls, I switch hands a lot.) Even if I were not taking narcotics, I would still be very careful about driving since I have limited range of motion with my neck–you know, turning it left and right. Looking back over my shoulder is almost impossible. With my limitations, I am always afraid that I will have an accident because I cannot react fast enough, or fully enough, to avoid it. Beloved does almost all of the driving. Only on his really bad days do I get behind the wheel–and he helps me watch out for possible dangers.

There’s also the whole loss of concentration and ability to deal with details as well as a certain amount of short term memory loss/lapse. I am easily distracted from whatever I am doing–and just going from the bedroom to the kitchen (about 20 feet) means I can forget what I’ve gone in there for–and cannot recall it, no matter how I try. This is particularly vexing for me, as I used to have nearly photographic memory. Well, my shutter speed is way down, let me tell you.

I’d love to be able-bodied, to do the things I used to do, to do the things I want to do. But that’s not my reality. And I don’t write this all out for you to feel sorry for  me, or to gain your pity. I’m just trying to explain what my life is now, in this moment.

There are good things as well, really! We’ve been going to the beach more often now that the weather has warmed up. We’ve seen pelicans, a seal, a fish that made the mistake of biting onto the bait of the surf fisherman. Lots of dogs, since there’s no prohibition on them being on the beach. We’ve seen a horse and rider enjoying the fun of trotting through the edge of the surf. I’ve even managed to pick up some driftwood and seashells–razor clams and even sand dollars.

Being with Beloved is always fun, even if we’re just doing the parallel play thing, with both of us on our computers and no particular interaction until one of us wants to share a meme or an article. We go out to eat when we can afford it and we enjoy sharing the meals and making our critiques of the food.

I am especially grateful for a healthcare team that works with me to deal with these realities of my disability–my Primary Care Physician, my psychiatrist and my psychologist, the PCP’s nurse (who is a dear!); the front desk staff, and just everyone I’ve come in contact with when I’ve gone in for an appointment.

I enjoy the view out my window. I watch the birds, occasionally get a glimpse of an egret flying by. I watch the trees blow in the wind and I’ve watched the flowers blossom, each according to their time. Rhododendron is a major “thing” out here and there’s lots of it, in different colors. It’s time for hydrangeas now. I’ve also seen a hummingbird. I’d like to put up a feeder for it, but haven’t gotten around to doing what that requires. C’est la vie.

Thanks to Facebook, I am actually in touch with my friends from VA almost more than when I lived there. Daily posts and shared items make my day better.

So I’m reaching the limit of what my hands can take and rather than save this as a draft, I’ll finish it up and post it out. Yes, I have my limits. So does everyone else. My biggest goal right now (behind winning my adjudication hearing) is to find something that I can do for fun, just for me. See, my psychiatrist asked me the other day, “What do you do for fun?” and the first answer (which you should always go with) that popped into my head was “Not a damned thing.” Time to change that. I’ve got several possibilities, just a matter of seeing if I can manage them within my limitations. I want to try watercolor painting and even have a “how to” book to start it with. I’m also trying to do some sketching. Nothing major, just little doodles to get used to drawing again. We’ll see.

So this is where I am, and with the oh so helpful chemicals in my system, not doing as bad as I was a week ago. I’m Kate, and I’m disabled. But I can still enjoy the perfection of each moment as it comes along, whatever comes with it.

Namaste!

The Only Constancy is Change

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

UPDATE:

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

Time Flies, Not to Be Confused With Horse Flies

Not only has the New Year arrived, it’s 2 1/2 months old already.  For those who were wondering, yes, Beloved and I stayed home and had our own quiet celebration.

We did go over to his parents’ house on New Year’s Day, for one last visit with his sister.  And remember that pork loin I thawed out?  Well, I made pulled pork–but either it was going bad and I didn’t realize it, or (and this is the theory that Beloved puts forth) the marinade it came in was so high in salt…I got really, really sick.  Not quite like food poisoning, because I didn’t vomit.  At first.  Let’s just say that by the time I was finally feeling better, I was clean as a whistle top to bottom.  With no desire to have BBQ pork for a while!

And then, we got the flu.  Fortunately it wasn’t a bad case for either of us, but it did extend out for a couple of weeks of just feeling “off” and kinda yucky.  Lots of naps, lots of liquids and lots of staying home.

We were both getting pretty desperate about the money situation.  Beloved cashed in his 401k…and those were the best two days of retirement…HAHA.  No, we’ve lived off that for a while now.  But without any apparent money coming in, we were really trying to figure out when we’d need curtains for the car because it would be our new house.

Before the panic set in completely, we began to get mail from SSA.  Well, first mine–“denied”.  Which we expected but it was still not a good thing to see.  And I immediately appealed it, which involved going to the lawyer and filling out forms (again).  When we told her about the long term disability benefits (or the lack thereof, for both of us), I thought we’d have to peel her off the ceiling, she was so mad.  “Give me the letters from your insurance companies and let me handle this, under my letterhead”: LAWYER very prominent on the top of the letter!  Hopefully that will work out because gods know we could use the income.  And while we’re working that back and forth, I get a phone call from Social Services saying that Beloved has been approved for Medicaid.

Now I had also been denied for that, with the reason being, denied for SSDI.  So, logically, IF he is approved for Medicaid, might that not also mean that he is approved for SSDI?  Long story short (too late, I know), the lawyer calls us to verify that Beloved is indeed approved and we have income again!

Did you know that there are two kinds of stress?  The one that you’re all familiar with: death, taxes, divorce, losing a job, bad work environment, etc.  That’s called “distress”.  Then there’s the other: “eustress” and it’s things like birthdays, parties, weddings, birth of a child, promotion, pay raise.  One is bad and the other is good.  EXCEPT that they both cause exactly the same physiological effects on your body.  So we went from the depths of despair to the heights of hope…and needed anti-anxiety meds and a nap.  Just saying.

Knowing that he is approved and has already begun to receive benefit payments helps my Beloved immeasurably.  He has OCD and it really manifests in numbers–and he is particularly stressed when money doesn’t work right, so not having an income for almost a year really hit his particular disabilities on the nose.  It doesn’t help that he also feels that it is his job to take of me, and not having an income was stressful for him because of that as well.  (And it works out, because I feel that my job is to take care of him.  It’s a cycle of love and caring.)  And he is hashing out those numbers, to see if we can afford to replace my poor old car.

She’s been a good car, can’t ask for better…but she’s old, the “check engine” light is on and the transmission seems to be slowly dying…ack.  We’ve found the car we want and when all the money comes in (our magical phrase for “someday”…when ALL the money comes IN!), we will just be able to get it.  Since it’s the last time (at least for our foreseeable future) that we can actually get a car without having to figure a car payment into the little budget…it makes sense to buy as great a car as we can now.  So we’re getting (when the money comes in, when the money comes in….say it enough to make it true!)…a Honda Insight (hybrid).  It’s roomy enough for us, has great features and the best thing?  Gets 46 miles to the gallon.  Makes it much more affordable to visit kids out of state, even if gas does go up to $5 a gallon.

Having that car will also alleviate some of Beloved’s stress, since he’s driven clunkers all his life and is all too aware how they can blow up at the least convenient time.  (Not that there’s a convenient time to blow up, mind you…)  To have a vehicle that does not have a payment, that has a great warranty from the dealer PLUS an additional warranty from our insurance just for having them cover our new car…that gets great gas mileage, and we fit in…seems like a really good thing to me.

So there may be a light at the end of the tunnel, we may have reached the top of this hill we’ve been struggling up for so long.  It seems that way, and in a superstitious way, I don’t want to say those things as a definite sentence.  Let me live with the reality, when it does materialize completely, for about a year and then I’ll look back and point to this spot and say, “this is where it turned around”.

Being off the Lyrica has been a problem.  I have the Cymbalta, and I am trying very hard to eke out the remaining Vicodin, because the free clinic doesn’t give out narcotics.  But my pain is not being managed well…so I spend a lot of time sleeping.  A regular day runs like this: get up about 9 am, play on the computer, eat something, back to bed for a nap by 3 or 4.  Sleep anywhere from 2 to 6 hours, depending on the weather and how busy we’ve been, up again and play on the computer, eat something and back to bed for the night between 1 am and 3 am.  Not exactly the day schedule the doctor suggested, but there we are.  And with the current change between winter and spring…owies for the changes in air pressure (each new front coming in).  I’m obviously more tired, I am foggy-er and not really able to keep track of things very well.

I am updating my application for VA health benefits with this past year’s income information, since we made too much in 2011 for me to be eligible.  I suspect that I will be eligible this time around…and there’s a VA clinic in Fredericksburg…so we’ll go get some food at Waffle House and then hit the VA for meds and doctor visits.  (Fingers crossed for this, otherwise it’s free clinic until I am approved for SSDI–and the other alternative I can’t even think about– or get insurance because I’m back to work.)

Oh!  I did get a new dishwasher at the beginning of the year!  YAY for my apartment complex manager!  She is so awesome–and it really is a NEW one, not someone else’s older but still working model.  Now if I could just get the damned dishes done…  We have been talking about making changes in the kitchen, to more genuinely accommodate the reality of my disability.  The large cabinet on wheels that seemed like such a good idea?  Not so much any more so it’s going to a new home.  That will free up space in the room so that Beloved can move around in there without bumping into it.  Since he’s having to do more cooking (if only for himself) than we had anticipated, making room is essential.  We’ll rearrange the pantry, get rid of dry goods that we’re not really going to eat, and clear off the low counter that serves as a work space for a person sitting on a chair.  We will replace the big, mostly unmovable-even-though-it’s-on-wheels cabinet with rolling carts.  One will live in the laundry room, the other will live in the kitchen–but it’s not as big as the current cabinet.  There is storage space and work space on the cart (we’ve picked out one we like at the Tarjay) and so one will be dry good storage and work top, the other more of a portable bar, with the booze, mixers, coffee and teas and etc inside and the coffee maker, coffee grinder and tea pot on top.  (We’re also going to get maintenance to turn the washer and dryer to face the door that is currently beside them.  Beloved cannot contort himself safely or adequately to load either machine, so if they are turned 90 degrees to the left, he will be able to open the closet door and do the laundry!)

Hopefully we can actually accomplish this before summer’s done?  HAHA.  Oh, and I have gotten some more ceramic knives.  LOVE THEM!  Will be getting rid of the rest of my knives except one, to have a pointy metal blade where the ceramic cannot be used.  Which isn’t that often.  Let me tell you, these knives are amazing.  SHARP!  Like lethally.  They cut slices of tomato that you could read through, chunk up chuck roast (for goulash) like cutting through soft butter…cut soft bread like a serrated knife.  Yes, I recommend them for everyone!  Run out now and buy yourself some ceramic knives!!! NOW!! LMAO

They certainly make it easier for me, with the hands that hurt and the arms that ache…to do kitchen prep without as much effort.  I’m glad to have them on those times when I can get in the kitchen and do stuff.  (The plan for today is to make that aforementioned goulash.  The meat has been marinating in SML (Schlitz Malt Liquor–don’t judge me, I actually like it) and spices, especially paprika.  Gonna brown off some onions and carrots, then add the meat and cook it to tender yuminess.  With the rain, an excellent meal indeed.  Even got some refrigerator (aka “whomp”) biscuits I could throw on top and make “dumplings” out of.  NOM.)

On the family front: my son has sold his soul for 3 more years of Naval duty, but is coming off the boat…he will now be a teacher, stationed in NY–so a little closer than GA was.  The Lizard is puffing up nicely as the new baby granddaughter grows for her debut on her sister’s birthday–two children with birthdays at the end of May.  There goes any Memorial Day weekend trips unless they are birthday trips!  With a new car, we will be able to go see her much more often…looking forward to that.

So that pretty much brings you all up to date, and I’m getting a little tired of typing for now…Keep dry and I’ll talk to you all soon.  At least, that’s the plan.

Namaste!

Could Be Worse, Could Be Snowing…

It’s a rainy Tuesday evening, here in beautiful downtown Bealeton.  It’s been grey and wet all day, more of an aggressive mist than an actual falling of rain drops.

The weather is killing me; have taken all the meds I can take for pain and I’m trying to ignore the fact that they are not doing the job completely.  It’s just a fact of life, not trying to complain.  But it does highlight why I cannot return to work, indeed why I cannot do things I want to do, let along the things I’m supposed to do.  And I woke up feeling pretty good…

Thanksgiving went well.  The FIL was very happy to see the bacon encased Tom Turkey.  All the MIL could say was “Oh my God!”.  She sent most of the leftover meat back home with us, and I’ve had a couple of turkey sammiches.  Gonna boil off the bones (which she also sent with me) to make stock and then going to make soup out of it.  Have the dried beans plumping already.  Was going to make it today, but think that the plans have changed slightly…doing the grocery shopping has given me muscle spasms in my back–and I got home to realize that I did not buy the ground turkey I need for the meatballs to put in the soup.  Damn.  So I’ll change the water on the beans and put them in the fridge for tonight.  Run to the store tomorrow and get the meat, then come home and make the soup.

Trying to fill out various kinds of paperwork to get it back to the people who want it in time for their deadline–which means Beloved’s LTD papers will have to be faxed, but that’s actually okay with me because it means that we will retain a copy of it.  The act of filling them out makes my hands hurt, so it’s write some, rest some, write some more.  Funny how I’ve gotten so used to typing everything that writing, actual HANDwriting, is difficult.

We thought my son would be coming up to Norfolk this next weekend, but it isn’t going to happen that way.  The US Navy has its own way of doing things and it’s generally not what you think it’s going to be.  Keep changing it up and you keep everyone on their toes.  I guess.  So he will let us know what’s going on once he knows.  The Rainbat and Froggy are still scheduled to come along on the 8th–I bought him some snack food today and I found a cute stuffed frog  with a hook on its back (like a key chain, but it will attach to something on his chairs so that he can see it) at the drugstore the other day.  (And found a cute puppy for the EG, same thing about the hook.)

It’s a bit scary how freaking fast the Christmas ornaments and lights went up this past weekend.  I had not realized how many people have the tradition of decorating for the Yuletide the minute the Thanksgiving turkey has gone into the fridge as leftovers.  I guess it gives the women something to do while the men are watching football-and then on Friday, since hubby doesn’t have to go to work, you put him outside, hanging up strings of lights.  I’m already sick of the Christmas Carols.

Part of that is because I sang in choirs for literally YEARS.  My first solo was when I was 9 years old and I sang “Adeste Fideles” (O Come All Ye Faithful).  I know the words to pretty much ALL of the songs for this time of year.  There’s only just so many of them, you know.  No one’s written a new holiday song, everyone just does a new cover of an old song–and most oftentimes, it’s not a good cover.  Beloved knows better than to sing them around me…unless he’s purposefully teasing.  In which case, he gets what he deserves.

It will be a small Christmas…the in-laws have spent all their gift money keeping us off the street and frankly I wasn’t expecting ANY Christmas, so a limited one is perfectly acceptable and more than adequate.  I have no idea what we will be giving them.  I keep trying to think of something I could make, but then I get sidetracked…squirrel! and can’t come up with anything.  Sigh.  At least Beloved’s sister will be home from Chicago, where she’s doing her postgraduate work for costume design.  She needs the advanced degree if she wants to go anywhere in the field.  It’s a good thing, but it means that we don’t see her as often–she had been living in Philadelphia.  Can’t just jump on a train and be home when you’re up in the Windy City.

And as my title suggests, it’s also the time of year for snow.  Lovely to look at, but oh so bad for my bones.  And all suggestions are that it’s going to be a hard, hard winter.  The woolie bears are two inches thick and you can’t see their shell for the thickness of the fuzz…and all the acorns fell off the trees at once.  Thunk, onto the ground.  And the leaves on the trees…didn’t really change color before they also fell off.  The Farmer’s Almanac says it’s gonna be hard and we are due one, so… The worst storms come in February.  I shall hunker down and wrap myself in my blankets and ask Beloved to bring me hot chocolate.  But it’s not like we’ll be going to doctor’s appointments…since we lose insurance in 2 days.  Double sigh.

So that’s about it for us…not much going on, not much new.  But I do like to check in with you frequently, so I’ve done that.  And I’ll check in again, within the next couple of weeks.  So get your Christmas shopping done early and I’ll talk to you later!

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!

Summer Springs into Fall

Amazing what can happen in just 14 days (since my last blog).

Chronologically, more or less: I gave my presentation at the International Day of Prayer for Peace and it was well received.  I consider it a major coup that the local Imam requested a copy of it.  There was a good crowd and we ate well.  I had no hummus to take home–and apparently they “tore into” the curry flavored one.

We had a more or less typical week following that, doing the usual stuff although we were both too ill to make it to the chiropractor’s on Wednesday.  I was finishing up antibiotics for a sinus infection and my dearest got something viral.  Did follow up with our administrative duties, making sure that insurance companies, employers and absence management agents were getting the information they needed to continue to provide disability insurance benefits, health insurance and such.  Oops, they weren’t.  So I got on the phone and started calling doctor’s offices then sat and waited for nurses to return my calls.

I also used the juicer to make pure apple juice from about 4 pounds of gala apples.  Let me tell you…it made about half a gallon which did not last long enough to require a pitcher to store it in.  OMG, VERY good.  I saved the pulp and made apple pudding: the pulp, eggs, cream, cinnamon, honey, nutmeg and a little black pepper, with apple slices arranged on top and then cooked over a water bath.  We took that as our contribution to the feast on Sunday when we went out to Delaplane for the Native American event.  Got to meet a lot of people and hope to meet with them again.  Beloved feels drawn to that path, even though he’s pure Polish.  (So even when we juice, the recipe opportunities from the pulp are intriguing–and at the very least, usable for compost.)

So this week began with a letter from his employer saying we can’t wait for the doctor’s any longer, a decision about continued employment must be made and no later than 10 am on Wednesday.  I spent that day and the next trying to find out what was going on with the situation, since I thought I had gotten things in order the prior week.  Apparently not.  I finally got a call from the PCP’s nurse at like 4:30 pm on Tuesday that said he would NOT send the necessary documentation, it needed to come from one of the other doctors involved.  I’d draw you a picture of me freaking out, but it would not be pretty.  Needless to say, I was in hyper-anxious mode.  Thank the gods for a doctor who WILL answer her cell phone, AT HOME.  And who will be happy to help out with an email, assessing Beloved’s ability to return to work (which is NOT).  We haven’t heard anything from his employer, so we’re hoping that was sufficient.  No news is good news and all that.

But the stress and anxiety of that was enough to trigger a fibromyalgia flare up.  Yay.  Took every pain pill I have, every pain pill I can have and still hurt.  Lost my brain somewhere in the process and spend the rest of the week in a fog, with a massive attack of ADD.  Can I have an ice cream?  Ooooh look, a kitten.  Yeah.  That has finally settled down–and btw, I slept 15, FIFTEEN hours Thursday night.  Laid down for a nap at 5:30 pm, woke up at 8:30.  A.M.  Tired much?

Friday I did get the good news that MY long term disability claim agent has FINALLY received all the doctor’s reports.  I only sent the claims form in to her a month ago.  And Monday she will review them and then send them wherever they go for approval.  (PLEASE, PLEASE, PLEASE!!!)  So I’m hoping to get a check this month, maybe but next month fer sure.  What small furry animal do I have to sacrifice to get that to go through?  ‘Cause I’ll do it, you know I will!

We have also talked to our landlord to determine the level of necessity for applying for a housing voucher.  Turns out it is very necessary–but if we’re going to use a voucher, we will be moving over to the income controlled section of the housing.  Which is not a bad thing, as we will have to go into a two bedroom apartment–just like the one I used to live in when I was out here with the Lizard, since I met the income requirements at that time.  Now what changes they have made for it to be ADA compliant, I don’t know.  BUT the manager JUST HAPPENS to have one coming available, if this other person does not take it, and it would be available on NOVEMBER 1.  So theoretically, if this all goes smoothly and I am approved for the voucher…I could possibly be moving in 3 weeks.

The only reason that doesn’t make me freak out is because I can’t do it.  Someone else will have to.  And….all we really need is for people to show up with their cars….take stuff and put it in the car, take it about half a mile away and put it more or less in the corollary spot in the new place.  We still have at least half of our shit (you heard me) in boxes, so that’s easy enough–and they all go into the second bedroom for me to bring out and unpack one at a time.  Instead of being piled up in a corner of the living room like they are now.  We can rent the $20 UHaul for the furniture and mileage…will be more getting to and from the UHaul store than it will on the actual move.

So think good thoughts because it looks like perhaps the time of being hung over the precipice by the gods and taunted with the sharp spiky rocks at the bottom of the chasm is done and things will actually improve to the point we can stop eating anti-anxiety meds like mints.

We hit the farmers market yesterday and failed miserably at spending less, but we do have some awesome produce.  The plan is for tomato, bacon and basil sandwiches today at some point.  I also intend to make salsa for my beloved man.  Doing my laundry now and going to tackle the kitchen, a little bit at a time as I can–got to get enough done so that The Man can make meat sauce for pasta as dinner tonight.

Synopsis: still sore, but not as bad.  Head is not as fuzzy or I wouldn’t be blogging.  I feel mostly tired and may end up napping–“he” has already gone to lay down.  I need to put my wet clothes into the dryer, which means I will probably putter around the kitchen for a little before coming back out to the computer and sitting/resting for another little while.

This next week looks rather active.  Our friend is coming over to spend the day tomorrow so I will implore her to do the dishes that require hand washing.  Beloved and I have phone calls to make and hopefully one of them will get me an appointment at the VA for the housing voucher, which we intend to go to DC on Tuesday to beg for.  Wednesday is back cracking day and Friday we have doctor’s appointments.  I am also preparing to cater a dinner party on Saturday night for about 8-12 people.  It is a Virginia themed meal, with VA wines being paired up with each course, made with something that is also local.  My friend is a  major wino…I mean, wine lover and has chosen the bottles.  Here is the menu:

Butterkase (German “Butter cheese” or another very mild cheese) fondue, with apple slices (voignier)

Williamsburg Peanut Soup (chambourcin or Cab Frank)

Pork (loin or chops) stuffed with chopped apples, onions, pepitas (squash seeds) and bread crumbs with (fresh) thyme and garlic
(If I can get a loin, I will ask the butcher to spiral cut it so that it would lay flat, then spread the stuffing on it and roll it up like a pork loin jelly roll.  If I have to buy chops, I will get them thick enough to cut a pocket for the stuffing.  If I have to do chops, I am also considering cooking them in parchment paper)  (Chardonnay)

Sides will be quinoa (cooked in the rice cooker and seasoned with butter, salt, pepper and grains of paradise*; looks like couscous and tastes like sweet corn) and whatever fresh green vegetable I find at the market, possibly a cucumber salad.

Dessert: “Apple Pie” (petit manseng)  Wherein the apple is gala, it’s in a custard and may or may not have a crust.  But if it does, it will be a crust made with vodka or apple brandy because that makes it flaky beyond words.

*Grains of paradise: a spice used a LOT in Colonial America, from Africa, also known as crocodile pepper.  Tastes like pepper, ginger, and cardamom.

My friend has a cider that he wants to share, but says that it will go best with something that is spicy, so I may make hot nuts (every kind BUT peanuts) so that as guests arrive, they can munch on those and sip cider.  Incidentally, I intend to use several different kinds of local apples, so that each course that has apples has something different.  And if I can find VA peanuts, I will make the peanut butter that the Williamsburg soup recipe calls for.

I will get the things done ahead of time that I can, so I am able to meter out my ability to do that day–and make it through the meal.  I also want to make cinnamon almonds to take to our doctor on Friday as thanks for helping us out last week.  Guess I’d better get the damned kitchen clean.  Sigh.

I’m still pleased with the cleaning products I have made.  MIGHT have hit on a good recipe for shampoo, but further testing is required.  I have also started the old-fashioned ritual of brushing my hair one hundred times at night.

And another random thought, as it occurs to me: we have been Skyping with my son and his family, but we do not have a webcam.  Well, Beloved will be putting together his father’s new computer (when it all delivers, tomorrow) and in those boxes, there is a webcam for us.  Guess we’ll be talking to the Froggy and he’ll be able to finally see us as well.  Looking forward to it!

So life goes on, with good days and bad days.  The change in seasons means more change in the weather, which affects both of us deeply (literally–in the long bones of my legs especially).  We are still in a bit of a limbo because no final decisions have been made about our status-es.  Stati?  If my long term disability benefits would kick in, that would be at least some income, and of course the housing voucher is a major godsend if I qualify.  I feel like I’ve hit a bit of a plateau with my fibro meds and not sure that they are as useful as they could be.  Will be discussing that with the PCP the 23rd of this month.

If we didn’t have the uncertainty, we would not be unhappy with our lives.  In fact, things aren’t really bad, other than no income.  Hope to have that solved soon.  In the meantime…we just go on, one step, one day at a time.

Namaste!