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!

The Path of Our Life…Has Some Potholes

It’s amazing how fast a couple of months can go by. Although I think I have a good excuse this time.
Beloved managed to have a nice gout flare-up, which subsequently mistreated by his doctor (real name: Ladika. My name for her: Ladicunt. I don’t use the term very often and consider it to be really offensive, but she has certainly earned it. She is BEYOND being a bitch.), the flare up turned into a full-blown gout attack. The medications were insufficient. Partnership Healthcare Management considered 9 Colcrys per month sufficient to deal with a flare. The FDA considers 2 pills per day to be the normal maintenance does. Do the math. And the doctor’s oh-so-learned response? “You need to do more exercise” and “I don’t think you have gout. You might have had it once, but I don’t think this is gout.” “You can get an ankle brace and compression stockings.” (Neither of which is covered by MediCal and would have required special  order/special cost.)

Ergo, we spent most of the past two months trying to get this addressed and properly medicated–to the point where I ended up taking my Beloved to the ER, where the doctor gave him precisely the same meds he had requested from Dr. Ladicunt. She was suddenly much more willing to prescribe the necessary meds since the ER doctor made the diagnosis. Did I mention that Beloved has had gout for over 10 years and KNOWS what works for him? Sigh.

We had to reschedule our adventure down to San Francisco until the end of the month to accommodate Beloved’s ankle healing. And it’s an ill wind that blows no good–the wait meant that I got my mobility access scooter in time to take it with us.

IMG_0444And I needed it, as there was no way I could have managed the walking required to get around on the medical campus. Most exciting part of the trip? I got to see AND go across the Golden Gate Bridge, something I’ve dreamt and thought about for years.

GoldenGateHome.JPGIt looks exactly as all the pictures of it show. But this is MY picture and going across it was awesome!

The trip itself was tiring, but I was very glad to get the MRI for my back. Turns out my hand clinic appointment was with a surgeon…so I’ve been referred to the asthma people and at some point in the next 3 months, will have to go back down there.

 

Nice people, but different than Eureka and we were happy to be back home, after dinner with Jack the Lumberjack.

IMG_20140529_160331

 

As you can see, in all of the traveling and caring for beloved, I still managed to find time to express my particular sense of fashion;

IMG_0177
I figured that I would blend right in and not really be noticed. Oops! I can’t go out without at least one person making a positive comment–young, old, black, white, male or female. They all like it!

And I’m glad that they do; it makes me happy. (And according to several people close to me, also makes me look younger. Younger is good!)

So…we fought out the gout attack; we survived the trip to San Francisco. Things were looking pretty good–and that should have made us nervous as a signal that Something Bad was in the wings, just waiting for its cue.

And so it was, and in fact, almost the Worst Thing that could have happened. I know that you have heard me complain about my Long Term Disability Insurance (and benefits) and the uncertainty of the “Any Occupation”review. Well, the uncertainty is over. The answer is, “You can work a sedentary job, in fact any one of these three specific jobs: User Support Analyst, Reproduction Order Processor, or Information Clerk. Aside from the fact that I don’t know what these are in real English, they sound suspiciously very similar to what I was doing before–and they all seem to require computer use, which is apparently a no-no, based on the doctor’s notes: “…would be capable of sedentary restrictions and limitations with frequent but not constant grasp and fingering bilaterally due to her reported hand pain.”

Let’s sum up my condition (physical, because mental illness is no excuse to not work. WTF?): I am in constant pain, even with the NARCOTIC I am taking. I’m not supposed to be driving. How, pray tell, do I get to work? I have frequent bouts of “fibro fog”, where my mental acuity is not acute; I have noticeable memory loss. I require a mobility access scooter for distances greater than about 50 feet. I am on a neuropathy pain reliever; the dose is high enough that I am clumsy, tripping or dropping things. I cannot perform my ADLs on anything resembling a schedule; I have to shower and wash my hair when I feel up to it–and that can sometimes be as long as a week. I have chronic fatigue–I take a nap almost every day.

Beloved and I are in the process of adjusting our food and meals because I am not up to the kind of meal preparation I used to do–the kind that was leading to a new career of private chef. No, what we have now is more processed or slightly processed, foods that require a minimum of cooking. Not the best choice but it’s the one that seems to work to get us both fed more than just one meal a day.

Incidentally, I am almost down to typing with two fingers because of the problems I am having. Data entry is NOT even a possible job for me. I used to type almost 100 words per minute. I think I’m doing about 20 wpm now. Just one more thing fibromyalgia has robbed me of.

On the upside of this stupid review and the company not wanting to pay benefits until 2028 if they determined I couldn’t do anything else–I have 180 days to submit my rebuttal, complete with new documentation and affidavits, etc. I am hoping that the MRI shows a back that cannot sit up or stand too long–and if it’s that bad, it will require surgery. Oh boy. Now if I can only get my shit together to write a cohesive, compelling paper.

This is about all I can manage right now. More when I can. Yes, it’s been a bad couple of days. And I’m supposed to be participating in #100happydays. And I am trying to….Sigh. Sigh.

Peace and blessings,
Namaste!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

Ch-ch-changes, Part the Second

I am chagrined to have to report that the effort of making our own household cleaners, soaps and such…is totally worth the effort.  I am mildly pissed that I could have been doing this for years, saving up enough money to buy that purple Lamborghini I saw.  I am also more annoyed that I am actually improving, at least mentally, without all the chemicals floating through the atmosphere of my home.  So what have I implemented?

I made the laundry soap.  Easy, and even a half recipe is going to last us a long time, so it’s not something I’ll have to do often.  The clothes feel softer, there’s no static cling even without using dryer sheets and I suspect that the clothes themselves will last longer if they’re not being cleaned with sawdust and chemicals.  Towels washed in this soap are more absorbent and soft without the weird waxy feel of dryer sheets.  Stain removal is the one thing we still need to learn, but other than that, this one gets a big check mark and a commitment to continue doing it.

I made the kitchen cleaner.  Okay, it’s equal parts white vinegar and water.  Not a lot of mixing, just pour them into the spray bottle.  I use it for every surface and it gets stuff clean.  Might take a little elbow grease, but all in all, very easy to use and it does not actually leave things smelling like salad dressing–in fact, it removes all odors.  Another check mark, another thing I can continue to do.

I made dishwasher soap.  I also use white vinegar as the rinse aid.  Other than the fact that my dishwasher is old and doesn’t get things clean the way it should, the products themselves work as advertised–and the amount needed for the powder is only a tablespoon, which doesn’t even fill the soap dispenser in the machine.  ANOTHER check mark, another item I will keep making.

Shampoo.  Ummmmmm.  Not so successful with this one, still working it out.  It may take time while my hair adjusts to actually making the oil it’s supposed to, instead of madly trying to replace what all the store-bought hair products strip off.  So my hair is soft, very soft, but not so shiny.  Work in progress and when I find the correct recipe or organic product (because right now, I’m washing with Dr. Bonner’s 18-in-1 Hemp Peppermint Liquid Castile Soap), I’ll let you know.

Body soap.  Bought a bar of organic sandalwood for me…and Beloved has been using it, to discover that for whatever reason, he doesn’t take as long to dry off with this soap as his soap for 2000 parts.  (no brand names, LOL)  When this particular bar of soap is gone, we have a three milk (including goat) soap bar that we bought at the Farmer’s Market to use next.  I will probably never make our bathing soap, there’s just too many options for organic, homemade out there.

(Side note: the use of castile soap to wash my dishes and my hair has had a most unexpected side effect: all of my jewelry sparkles like it was just cleaned at the store.  I haven’t scrubbed it or done anything other than get it wet (and soapy) while washing other things.  Just saying)

So it was worth the extremely lower cost of stocking up on the various supplies to make our household cleaners and beauty products and I will continue to make them because frankly, it’s EASY to make them.  And I know what’s in them and don’t have to worry about chemicals and such.

Other changes…we went to the Warrenton Farmer’s Market yesterday.  Our friend, Todd (chef at Black Bear Bistro) met us there and introduced us around, showed us which places to shop at particularly and then pointed out the places we will probably want to shop–he has to buy in bulk, so prefers to get most of his produce from a man who has less types of items but more of each item.  We came home with produce, ohmydeargods, bread and meat.  The prices are VERY comparable to Wegman’s or Trader Joe’s–and it’s local and organic, which you know means that it wins in the choosing game.

I had a tomato and basil sandwich on some of the bread we bought as my final meal last night.  I can’t begin to tell you how absolutely amazing and terrific it was.  I’m looking forward to my fried green tomatoes!  We bought stuff for juicing which will probably make our feeble attempts last week look sick… Our plan is to go each week, at least through Thanksgiving, when it closes–and hopefully, we can limit ourselves a little better than we did this week.  There’s a certain impetus to actually eating it all when you’ve paid dear enough for it, as well as knowing that it’s fresh, organic and just plain awesome.  Eating the tomatoes won’t be a problem for me…I bought red (and ripe) ones, a yellow one and the aforementioned green ones.  Got carrots, kale, banana peppers, sweet bell peppers (in several colors), cucumbers, and the basil.  Didn’t get apples as we have a peck at home, but probably will in a  couple of weeks since they keep in the fridge pretty well.  Did get some pork sausage links which we’ll use as protein adjuncts to some eggs for first or second meal (first meal is really supposed to be juice and protein powder).

Taking it easy this morning as I am a speaker at the International Day of Prayer for Peace in Manassas this afternoon.  Made three kinds of hummus–one for us and two to take–to share in the after service potluck.  Have carrots and baby pita pockets for dipping.  Thinking about wearing the new dress I got–went to the thrift store on Wednesday, when everything is 25% off, to get clothes that more accurately reflect my current situation.  Got yoga pants and tank tops, another light jacket similar to the ones I wear, and this pretty green and white dress.  The parameters were that the clothes be comfortable, able to worn around the house (which means showering and getting dressed, every day!) but still able to go out in public in them (as opposed to my robe or pjs that I’ve been wearing).  I think I succeeded.

I still ache, am having pains as usual–it’s weird, my brain feels well, almost normal (haha) but even though I know I’d like to be doing things, my body is still not up to it.  But the mental clarity is welcome.  Endurance will come eventually.  I am already more active than I was a month ago.  Oh I still have my “sit and do nothing” days because I’m very responsive to the barometric pressure changes…but hopefully this is a precursor to having something resembling a life again.

Namaste!

Pride or Honor?

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

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

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

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

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

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

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

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

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

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

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

Namaste!

And Life Goes On…

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

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

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

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

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

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

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

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

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

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

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

Namaste!

Really Planning for the Future

Today was somewhat better than yesterday.  Pain levels are about (the new) norm and I do feel better than I did.

Thank the gods for a husband who talks to me, who actually communicates!  We had a long talk this morning and he basically called bullshit on my current health status.  He has made a point of specifically mentioning the ways in which I am improving–or not.  He said flat out that I had given up.  I cannot see an end to this current state of being and I don’t want to be disabled.  I have stopped cooking on anything resembling a regular basis and our eating habits are dreadful.  I’m putting weight on again and that’s just not acceptable to me.  But I can’t exercise…so I’m caught in this cycle of eating bad, gaining weight and etc.

He has also told me to my face that I am clinically depressed.  He should know, he’s skirted the issue himself and when I explained that I was having a really hard time handling the situation, he fussed at me for not saying anything.  Which is why I am here, trying to explain how things are for me without whining. This really is meant to be a “for your information”–while I try to be upbeat and positive about my life, there are things going on that definitely are not cheerful.  So from a clinical standpoint: I am angry.  I am totally pissed that I have fibromyalgia.  Totally pissed that it was not diagnosed when it first began, which I believe was in high school–even as I acknowledge that it would NOT have been diagnosed as such back then (late 1970’s).  Totally pissed that all the accommodations I made over the years are no longer sufficient for my life now.  Totally pissed that I cannot do the things I enjoy, let alone the things I must, such as household chores and showering.  Oh yes, taking a shower–used to be a 20 minute event and now takes at least 30 minutes to wash the same way I always have because I have to be careful and slow or it hurts too much.

I am terrified that I will never regain the level of ability I had just 2 years ago, that I am really ….  you know … DISABLED.  That I must make continually updating accommodations depending on my levels of pain and energy.  That I might need a wheelchair or other special equipment for the handicapped.  That I will have to let go of some of my hobbies because I can no longer do them.  That I will never hold another job because (at least right now) I cannot do anything for 8 hours straight; I need to work a little, rest a little and repeat as needed.

Never having another job leads me to another source of stress: money, or the lack thereof.  If I go on permanent disability (SSDI), it means a limited income the rest of my life.  No way to make overtime or bonuses, a severe limitation on spending without careful planning.  No casual spending, no impulse buying of things that cost more than $5.  It quite possibly means food stamps and other social services.  Which I would be very grateful for, but the hoops that are required to get those services…I’m not up to jumping through them.  Yet.

Which is yet one more stress-inducing concern: it is my plan to thoroughly consult with my physician and get his medical opinion of just how fast I am really going to heal and be back up to speed.  I will get his input on what is our tentative plan of action: to retain the services of a lawyer and begin the process for SSDI.  My health has been an all-consuming issue for the past 8 months.  I have been out of work 5 1/2 of those months.  I have not had a paycheck since the end of February.  And if you read my prior blogs, you will know that I am also no longer employed so I don’t even have a job to return to.  A job at this point means the whole bitter process of finding a job opening, applying for it, interviews, and then praying I get it.  And having to explain why I do not have a job at this time.  Think that will improve my chances or be a black mark against me?

So I am angry and terrified.  Now we have to add to that this sense of malingering, the feeling of not meeting my responsibilities (like cooking or cleaning), and the definite lack of desire to ask for help.  I feel resentment that I cannot hold my grandchildren for very long and only with careful planning–like being seated and having my granddaughter slide up onto my lap.  I am afraid that I will drop them if I pick them up–if I could pick them up.  Actually, I feel a lot of resentment about all the things I can’t do.  I don’t want to be disabled, remember?  If I can do things myself, then…I’m not.  Even if it takes me longer, even if it hurts like hell.  Or like my husband said, I’m as stubborn as he is and will try to plow through it and then wonder why I feel so dreadful later on.  If yesterday was a typical day, I cannot imagine living another 30 or 40 years like that.  Even if yesterday was a “bad” day, and my “good” days are not so painful, are definitely better but not where I was a couple of years ago…I still prefer not to live like that.  Live like this.

Am I suicidal?  No, if you mean am I looking for a way out and actively planning my own demise.  Am I depressed enough to lack the motivation required for a better standard of living, or to accept that this is the way it is and learn how to deal?  Yes.  Are there times when I feel that being dead would be the only way to be rid of the pain?  Oh hell yes.  Being disabled ends so many of the things I had thought about doing, hoped to do, wanted to do.  And I am not seeing the other things that it will bring to my life, the possibilities I never considered, the chance events that would not have occurred without this disease.  I know that they must be out there but the dark cloud of my despair and anger does not permit the glimpsing of anything positive.  BUT suicide is not an option because I will not leave my husband.

So let me end this here, stop the whining and complaining.  I have worked very hard over the last 10 years to get negativity out of my life and I am greatly disturbed to realize that it can jump back in without missing a beat to take over my thoughts again.  I cannot do this alone this time and I am grateful beyond words for my beloved husband who watches out for me and watches over me.  I am grateful for a doctor who will listen to me and work with me to find a course of treatment that will be the most helpful.  And for this particular issue, I am willing to take an anti-depression medication, which he is willing to prescribe.  I need the chemical assistance; simple force of will is insufficient.

Having someone who loves me enough to make me face the facts I’m trying hard to ignore but need to deal with?  Priceless, absolutely priceless.  I do not know what I would do without my husband and I am ever so glad that I don’t have to find out.  I can make it through anything if he’s there with me.  Which makes any day better, no matter the pain.

So if you also suffer from fibro, please know that when you get down, there is always some way up–you just have to find yours and it’s worth the effort to do so.  Pursue every possibility, try all the medications you can to figure out what works for you, and do that IAO thing: Improvise, Adapt, Overcome.

Namaste!

Having a Bad Day and Planning for the Future

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Namaste!

Breakin’ Up Is Hard To Do…or Not.

It’s true.  You’ve heard the rumors, so let me just put this straight out there.  We broke up.  We’re no longer together.  I’m not sure why it happened, I mean…we hadn’t been fighting, there wasn’t any apparent unhappiness. And out of the blue, I get a phone call.  “It’s time we terminate the employee relationship.”  Six years of my (work) life, gone in a 45 second phone call.  I guess they wanted to work with someone else.

Real classy way to let someone know that they no longer have a job…although I guess there’s a lower chance of the employee going postal and killing people if you say it long distance and not to their face.  And after the initial shock, not that great a blow.  It’s a relief, actually.  Not having to worry about pushing myself to get back into the saddle again, so to speak.  No pressure to return to the 9-to-5 until I am completely healthy.  And they are within their legal rights, as they were very careful to say that the termination is because of my medical condition and that when I am ready and able to return to work, I am “immediately rehire-able”.  Don’t hold your breath.

I started in December of 2002, took a hiatus for 15 months over 2004-2005 and had worked there since.  So six straight years of loyal employment.  Six years of showing up, doing my job and not just doing it, but doing it well.  Two years of taking reservations and setting up calls, then four years of postcall services.  Excelling in each position, overachieving and generally being considered a SME (Subject Matter Expert) for both departments.  Wrote MOST of the Standard Operating Procedures for 3 out of 5 departments (with help from several other SMEs).  Began the Disaster Recovery policy and procedures documentation for the entire workplace.  Was consistently told how “awesome” I was, that I was a “rockstar”…but was never promoted.  Was never hired for the training department even though I taught the reservations class twice.  Never even made it to Team Lead, let alone supervisor.  Completely ignored the 3 times I applied for IT positions, even though I had the qualifications.  Consistently passed over for other positions that I applied for, with the pat on the back and being told “you were one of the best applicants”–but apparently not hireable.  (But younger, attractive women were…go figure.)  Told to apply for those positions when others were promoted to higher paying jobs without requiring the quoted (to me) policy of “posting every new position for applications and interview process”.

Rehire?  I don’t think so.  I was the one who covered the shit shift for the better part of 4 years, the one who couldn’t take off a day without pushback about “covering your shift” while everyone else got days off whenever they asked.  And when I was diagnosed with fibromyalgia, I had to fight, tooth and nail, to get any accommodation beyond ergonomic keyboard and chair.  My doctor specifically wanted me on a day shift and all I heard was “needs of the business” and no one else “wanted to cover the shift”.  Hate to rain on your parade, but a doctor’s orders take precedence over someone else’s “wants”.  Needs of the business applies to the entire department, not just one person.  Yet somehow the shift was covered when I went out on short term disability the first time.  And when I went back to work, I was given the day shift (because the doctor, bless him, had made that mandated for my ability to return at all)…and the end of the world did not come and the evenings were all covered.  Gee….

And now here I am, second time out for short term disability.  (Probably should NOT have pushed and gone back to work the first time, since going to work lasted only 6 weeks before I was too ill to work again.)  FMLA expired, losing me the protection of my actual job–and within something like 2 weeks, I was “terminated for medical reasons”.  Even though all along, everyone at work had been assuring me that they would work with me, that my job was secure, that I just needed to focus on getting well.  So our breakup phone call was a shock, to say the least.  I suspect it was done so that they can justify the new hire request for my job.  Even though one of my coworkers was out for months for medical; they hired in-house temporary to cover the slot while he was getting better.  Apparently there is not equal treatment for all employees.  Re-hire?  Not if you offered me the CEO position.

I’m going to find me a new love, a better job, where my efforts will lead to promotions, and my worth will be both recognized and rewarded by my bosses.  To quote Eliza Doolittle from “My Fair Lady”, “I can do…without you.”