The Circle of Life (With a Disability)

Forget Area 51. Don’t worry about crop circles or anal probes. You need not look for UFO’s or any other-worldly phenomenon. The aliens are already among your population. You just haven’t recognized them.

What do they look like? Well, pretty much any person who has a disability is an alien. Anyone who cares for the disabled is maybe an alien, maybe human but definitely controlled by the alien for whom they care.

And I’m not completely joking when I say this. People who are disabled will get what I’m talking about instantly. Those who are fully able will not have a true understanding simply because they cannot begin to fathom a life lived within the confines of disability.

We’ve talked several times here in this blog about how life revolves around our individual disabilities. Everything, and I do mean EVERYTHING, has to be passed through the disability filter before it can be acted upon or allowed. Some things seem obvious: a blind person cannot drive; a paraplegic cannot be a ballerina; an amputee cannot do the usual things a person with all their limbs are able to do. Medical science and technology have come a long way with a variety of devices or treatments that allow a semblance of “normal” to many obviously disabled people.

However. There is a hidden population of people with less obvious, maybe even invisible disabilities. My dear readers, you probably know pretty well what I am talking about. Diseases like lupus, fibromyalgia — and yes, it IS a disease, don’t let some ignorant person tell you differently, not even your own healthcare provider — diabetes, narcolepsy, the list goes on. And on. Far too long, far too many diseases that are disabling the people they affect.

And it’s this hidden group that has the hardest time trying to fit into “normal” society because the rest of the community fails to see the disability. They cannot accept it, cannot understand how it is just as debilitating as losing a limb, eyesight, or any other of the visible disabilities. These hidden folk also have the added burden of trying to continue to function in society as if they were not sick–and frequently paying a dear price for that masquerade.

We grow up thinking that we will always be able to do the things we want to, the things we must do, without any thought about how a myriad of daily activities can be accomplished when the body fails us. Pretty much everyone I know that has any disability goes through the stages of grief as described by Dr. Kubler-Ross: anger, depression, denial, bargaining and acceptance. She originally used these stages to describe the mental processes of someone dealing with death but they are just as applicable to those with disabilities. The catch is, someone with a disability will go through these stages more or less continuously their entire life. They can begin on any step, miss one (or more) to the next step…and just when they think they’ve found the final acceptance, something changes and the cycle begins again.

Anger. Depression. Denial. Bargaining. Acceptance.
Anger at just having this disability, or the group of symptoms that adds up to disability. Anger at your body failing you, anger at not being able to do the things you used to and by association, anger at not being able to make the most casual of social plans (let alone maintain a work schedule) without careful planning and fall back plans. Anger at the cost of disability: doctor visits, medications, peripheral assistance devices (like a scooter or a cane), time missed from work — if you’re even holding down a job. Anger, pure black blind rage, destructive and yet wholly justified. It will eat you alive if you don’t learn how to let go of it and not let it rule you.

Depression. Denial. Bargaining. Acceptance. Anger.
Wow. Depression is a BIG one. First, anger (see above) turned inwards, towards yourself, leads directly to depression. And depression is not the same as sadness. Or feeling blue. It’s not a monkey on your back…it’s more like a 300 pound gorilla. (Which is the average weight of a wild male gorilla–not some random number.) It’s a different shade of black than anger. It’s black like a tar pit, or the utter bleakness of lonely place on a cloudy night. It’s drowning in molasses: slow, messy but inevitably leading to death. It’s being totally ostracized from all society except those who are also disabled with depression. Yes, it is one of the invisible disabilities just by itself–but it frequently hitchhikes on the back of another disability.

Denial. Bargaining. Acceptance. Anger. Depression.
Denial…oh no, not me, uh-uh, no way no how. Can’t be about me, can’t be me. There’s the all too obvious denial of the disability, of the disease/s straight out. But there’s other, more subtle denials. One of my favorites is not accepting how truly limited I am, trying to do something and paying for it in pain the next day. There is always a price to denial and it’s usually a fairly expensive price. Denial is also the failure to explain to the people around you just what life with your disability is like, to help them understand the reality of your disability and to be compassionate when you cannot be who you used to be, B.D. (Before Disability)

Bargaining. Acceptance. Anger. Depression. Denial.
Bargaining is never a good choice when your collateral is…well, negligible. And bargaining directly with your disability is a sure way to lose it all. Bargaining can mean setting a limit on the restrictions…”Okay, I’ll take it easy, not lift and move all those boxes today…then I will go shopping with my friends tomorrow.” I have news for you, Sunshine. You can take it easy, rest up, trying to bank energy against a future activity…and still be too disabled to attend the function, do the task, whatever you were resting up for.

Acceptance.
It is a tremendous blessing to be in a place where you have truly accepted this life of being disabled. It’s a place where you do what your body permits, without pushing the limits. It’s the gentle refusal of an invitation to anything that would smash the limits of your disability and leave you in a state of panic, depression…or just so damned worn out that you must leave and you’ve only been there 30 minutes. Acceptance is the graceful (and grateful) allowing others to do for you things that you cannot do. And knowing that you will (always) be the one who receives and not the giver. “It is more blessed to give than to receive”, we’ve been taught. Well, someone has to do the receiving or there’s no way to give. Acceptance is a balanced, spiritual, sacred–and even happy–state of mind. It only shows up minute by minute, so it’s worth watching for, to be in the state of acceptance whenever you can identify it.

Because…

Anger. Depression. Denial. Bargaining. Acceptance.

It’s a cycle, never-ending but always changing so that you can, perhaps, find ways to skip the first four, acknowledging them but not letting them take charge of your life, to be in the state of acceptance for as often as is possible for you.

Disabilities affect us at pretty much every level of our lives, from being able to dress ourselves through unimpaired functioning at work, through attending gatherings (which strengthen the tribal bonds). Like everyone else, we have lots of choices throughout our day…but ours generally are of a particularly mundane level. Can I take a shower? Can I go out? What do I want to eat, or what can I eat? Am I able to concentrate and focus enough to do a craft, read a book, surf the Interwebs? Can I load the dishwasher, sweep the floor, wipe the counters? We the disabled have to consciously make choices that most people make without a single thought of whether they will be able to do it…or not. Everything we do requires some amount of conscious thought, a directed choice process, always and always weighed against the limitations our disability has bestowed upon us, a cursed blessing that is part and parcel, sometimes an entirety, of the disease/s we suffer from. We do suffer…but we don’t have to stop living–even though some do make that choice, based on all that we have discussed above.

Making it personal now, I will tell you that it has been a bad week for me, state of mind-wise. I have been very depressed (not directly suicidal, but feeling hopeless and without any way out). It hasn’t helped that my body has been particularly achy…or right out painful. I am at the edges of where I can be with my Vicodin…but there’s been no word from the pain management team in San Francisco (our main medical center and not where I receive care) about my getting a Fentanyl (Duragesic) pain relief patch–3 days of level pain reduction and not the roller coaster I ride now. You know, take a pill, wait for it to work, it works then begins to fade out, take another pill, wait for it to work…ad infinitum.  So I am essentially not properly medicated for pain–which technically is against the law, a law I am so thankful for every day of my life.

The weather has been nice, which sort of helped. Beloved made it his mission to help me get a bit out of myself by taking me out to eat. You know, the requirement to dress, get out of the house, be around other people (which is not always a good idea for me, with my social anxiety problems). I can tell you that we’ve had some interesting things happen. Just yesterday, there was a horse, eating the dandelions from my lawn. I don’t live out in the country. I don’t own a horse. I was not aware of any stables nearby. But there it was, big as life (well, of course it would be) and nibbling my lawn. I got to pet Cooper and talk to his rider–and forgot to get a picture. Only in Eureka can you find a man walking his turkey, a horse eating your lawn, “Captain America” doing the walk of shame after a costume party the night before. It’s never boring, that’s for sure. At least, not outside of my own personal funk.

I would definitely describe myself as “at step 2: Depression”, thank you very much, Dr. Kubler-Ross. I am wallowing in the inescapable truth that I am even more limited than I admit to being. I resent the fact that I have to push every decision, every choice or possibility through the triple damned “disability filter” before I can do anything. I am grateful that breathing is NOT one of those choices and I hope that remains true.

Things are being accomplished. I had my intake appointment with my back-up, urgent or acute care doctor–my husband’s care provider and not part of the VA system. We’ve both got referrals out in the medical ether–me for cardiology and acupuncture, him for dermatology. He’s gotten his appointment with same, but not me. Yet. I am in the process of getting the medical notes from the independent evaluation back in March–the office will not, cannot issue those records directly to me. Seems the contract the doctor signed from my insurance company specifically forbids it. BUT they can be released either to my lawyer or my doctor. Guess what? Both of them are requesting the records. I want them in my records because they are part of the history of my disability. My lawyer wants them for further evidence as we move through the SSDI application maze. And either my lawyer or the VA will give me a copy because I want to know what the doctor found and wrote about–especially since it made the insurance company give me a “total disability” status.

I have also been the very grateful and very gleeful recipient of a Microsoft Surface Pro 3 (tablet). My father loves me a lot! It’s really good for watching movies or Kindle. I’m still getting used to the touch screen, but I must be successful because when I come back onto my laptop, I try to touchscreen things…and then get mad that they don’t move…duh. Uses a mouse, it does! I’m looking forward to a day that we feel up to it, and go to the coffee shop to spend some hours there. My Surface will go with me and I can cruise the Interwebs from there.

I’ve even been doing some cooking–got a recipe for Turmeric chicken that will be a more or less steady item on the menu. Same goes for a recipe of a Szechuan peppercorn marinade, really nommy on pork ribs (country style, no bones). Figured out how to make pumpkin-cranberry bread in my breadmaker. And that will also be repeated–as soon as I can clean out the pan for the breadmaker. We’ve gotten a replacement for the rice cooker we lost in the move and are cranking out rice pretty often–at least once a week, sometimes two.

So I’m blue at about the azure stage–not navy blue. But definitely more blue than pastel blue. And I know that eventually this will pass. I truly suspect a lot of it is based more on the anxiety of pain unrelieved and the “normal” anxiety of income and making the bills. I think that if I can get my pain better controlled, a lot of the side symptoms may leave. I hope.

So thank you for reading this, and I hope that you’re in a good place, a good state of mind.

Namaste!

 

The Pain of Being Touched and The Heartbreak of Not Being Touched

Fibromyalgia has been known by many other names, including chronic rheumatism, myalgia, muscular rheumatism, fibrositis, myofibrositis, and spinal irritation. The list of associated symptoms is an impressive one–never less than 3 and frequently a lot more than that, a virtual litany of problems that relate back to that single diagnosis. Whether your doctor is sympathetic and refers to it as “fibromyalgia”, or he says that “fibromyalgia is a ‘junkyard’ term” (which my newest doctor actually said)…at least physicians seem to agree that the predominant symptom is chronic pain. Which they are required to treat, according to the law.

“Chronic pain”. Two short and simple words that fail utterly to accurately describe the reality of life with never-ending pain. “Chronic pain” is like a password, the secret code word that opens the portals of an exclusive club. Well, not that exclusive. This disease affects between 2 and 4 percent of our population, mostly women. Men who are diagnosed with fibro may find it difficult to get the proper treatment they need because it is associated with women’s health. (Here is a good site to use as a starting point, either for you or to help explain fibro to your family and friends.)

If you’ve had fibro for more than 10 minutes, you know about the “tender spots” and “trigger points”. You’ve probably heard about “soft trauma” and a handful of other terms that all basically mean the same thing: pain. Doesn’t matter how it gets started, only matters that it never ends. Even with medication, the pain is always there, just waiting to take center stage again. You have to choose between having a clear head and ability to think coherently but suffer the pain, or take enough meds to reduce that pain to a murmur in the background…while you are literally Dopey, sleepy and basically not safe to operate any machinery–from driving a car down to using the toaster.

Chronic illness of any sort takes over your life. Chronic pain just makes the inevitable losses that a chronic illness requires that much more…well, painful. To be blunt about it, certain chronic illnesses (or more accurately, “chronic medical conditions”, hereafter referred to as “CMC”) are visibly limited–people in wheelchairs, missing limbs, paralyzed, or blind. Fibromyalgia is just one of the invisible conditions that are as limiting, as devastating as being paralyzed. With these invisible CMCs, someone can’t just look at you and realize that you have limitations.

And if you thought the list of associated symptoms for fibro was long…the list of what it limits, the things it will steal from your life is longer. Much longer. Chronic pain affects everything you do–or don’t do, or cannot do any more. And I’m not talking epic events. I mean things like cooking dinner, making a bed, washing yourself. What other (healthy) people do every day without even thinking about it–requires planning and adaptation for those of us with any CMC.

Receiving a diagnosis of a CMC is like being told your mother died. You have to go through the Kubler-Ross stages of grief: anger, depression, denial, bargaining and acceptance. And there is no time frame for any of the stages, nor do they necessarily line up in that particular order. There is frequent overlap between two or three of the emotions listed. And sometimes, you just don’t get past one of them…maybe two. And sometimes you’ll think that you’ve gone through them, arrived at the end and have accepted the loss of your old life–and then something happens that make you realize you were fooling yourself. And the grief cycle begins again.

Depression is the symptom that is almost synonymous with a CMC, particularly one like fibro that has so many limitations. Why wouldn’t you be depressed, when faced with a body that never stops hurting somewhere, with new inabilities cropping up, when you realize that the life you thought you’d have can never be, no matter how hard you try? And depression is anger turned inwards. Our society teaches women in particular to be soft-spoken, to be gentle and to never, ever express such strong emotions as anger. Fuck that. You heard me. If you’re feeling angry, you have every right to express it — loudly, with a lot of swear words, or however you want to. The only caveat is that your expression should not hurt you–or anyone else. So suicide or murder are not appropriate expressions of anger. Throwing china can be, if you’re willing to clean up afterwards. (Or if you have a loving someone who will hand things to you for you to throw and will then clean up for you.)

Be angry. Feel depressed. Grieve for your life, because it’s changed completely the moment you truly acknowledge that all these vague symptoms add up and your doctor has diagnosed a CMC. You could do what I did, which was to announce loudly and in front of other people that “I will not allow this disease to define who I am.” Right. Within a month, I realized that “this disease” had been defining my life for literally YEARS. I figure I began having fibro symptoms perhaps as young as 13 years old, but definitely by the time I was 15. I had the tender points–couldn’t stand the boys coming up and poking me in the ribs. I never laughed, and when they complained that I didn’t react “properly”, I told them that it hurt. Which it did.

I have had vague aches for as long as I can remember. While I was young I could just “push” through them. I managed a 4 year stint in the USAF; got married, had children. But looking back from this point in time, I realize that I began accommodating my aches (which were growing into pain) in a variety of ways. For example, I would clean the house. You know, dust and vacuum, put things away, take out the trash. But I did not do all the tasks in one efficient blur of cleaning. I’d work for about 30-45 minutes, then sit for about 15 before resuming the chores. This is when I was but a mere child of 28 or 29. And so gradually I didn’t notice it, that 30-45 minutes of “up” time got smaller and I required greater time to rest.

The aches had gotten full grown into pain, on a very regular basis. It was localized in my hips and knees so I wasn’t thinking “fibro”–hell, back in 1992, no one used that term. I did go to a rheumatologist, told him I had pain in my knees and hips. I got spend $500 for him to eventually tell me that I had pain, located in the knees and hips. Hot baths and aspirin were his prescription. I had already been doing that–and there’s just so much time you can spend in a bathtub. And so I lived on, making small adjustments as I needed to but never thinking of them cohesively as limitations because of my health.

Time passed, as is its usual manner; the kids graduated high school and went out into the big world. I lived alone for the first time in my life. I kept the house clean–but it was 10 minutes of task time, then 20 or more to rest before hitting the next 10 minute task. I began to have neuropathy–a fascinating pain, more like hot lightning than stabbing or thudding. I was becoming (even more) clumsy–my father used to tell me that I couldn’t walk and chew gum at the same time without falling. I began avoiding stairs whenever possible. My sleep patterns were fractals, at best. I had worked night jobs for 6 years and figured that the 4-6 hours I was sleeping was because of that.

I have had stress incontinence since the birth of my first child. (Thanks, kiddo.) Suddenly, I also had IBD (or IBS, depending on whether you consider it a disease or a syndrome). I would have no warning, no cramping or gas to let me know I’d better head for the loo. So when the first sensation of pressure appeared, I’d have about 3 minutes to find a porcelain receptacle or I would, to be grossly blunt about it, I would shit myself. Dear gods, I was only 46ish and I was not ready to be wearing Depends…

In 2010 I met and married my dearest love. He also has CMC, both physical and mental. So he had a very good relationship with his doctor, whom he had been seeing for about 7 years. He took me in for what was my first real physical since…the Air Force? That was in June. For the next 4 1/2 months, I began to really pay attention to my body and what was going on. I had quite a list of things…damn. I did exactly the wrong thing and went onto WebMD to check out the symptoms. Each item on my list had its own list–but they all overlapped at “fibromyalgia”. So I went back to the doctor and told him what I had discovered. And he told me that he had thought I had it, the first time he saw me. Well, gee, Doc–ya coulda saved me a lot of time if you had just said it then. But he also told me that he preferred to have his patients identify it for themselves because it was still considered a “throw away” diagnosis, something to tell a patient, giving their problems a name and make them go away.

I have to say that giving my symptoms a name seemed to open the floodgates of fibromyalgia. It poured over me and flowed into every single aspect of my life. It seemed that by admitting I was sick, I was suddenly aware of just how sick I really was–and apparently had been denying, “pushing” through it for quite a while. Within a year, I started using a cane for stability and had to stop working. Within two years, I was barely functioning as we experimented with the necessary medications to get the right ones at the right dose. At year three, I was in a really bad way because the VA doctor I was seeing then removed me from pain meds and then overdosed me on my neuropathy pills.

At that point, I was also dealing with Beloved’s month-long stay in the hospital–caused by gross incompetence: the doctor sent him home three times without addressing the reason we had gone there in the first place. He was having intractable vomiting and couldn’t hold down anything–and that went on for 3 weeks. You can die from dehydration, you know. So needless to say, I was an emotional wreck–which of course affects the body. I ended up at the main VA medical center, with instructions to be admitted for psychiatric evaluation. I had every sign of a panic/anxiety attack, and the most beautiful British accent. I’ve told you about it before so I won’t go into the gory details here.

We apparently moved, although I barely recall the cluster fuck of getting our apartment emptied out. We arrived in Eureka CA on November 2, 2013. Our problems haven’t gone away; some have gotten worse. I have had my adjudication with the Social Security Administration’s judge–and been “declined” again. I will now move up to the appeal board–and if they also “decline”, then it’s into Federal court. With the move, I of course have had to change lawyers and the new one inspires trust in us that we can do this, and that I will (eventually) be declared “permanently disabled”–and collect SSDI. (Could take up to 4-6 more YEARS. Erk.)

In the meantime, we are living on just Beloved’s SSDI check, food stamps, food pantry–and the incredible generosity of his parents. We do not regret the move–if we were still in Northern Virginia with all of the same things happening…we’d be living in my in-laws spare bedroom.

So actually of this has been to set the background for my main discussion: The Pain of Being Touched and the Heartbreak of Not Being Touched. My story is not unique; anyone with a CMC has a story like it. Since I know fibromyalgia best, I’ll just use that from now on–but if you have a different chronic condition, just substitute the name of yours.

Chronic pain, as I said in the beginning, is completely inadequate to explain what the person with chronic pain has to live with, has to deal with on a daily basis. It’s the sole indicator of whether you’re going to spend the day in bed or if you can actually make some chocolate chip cookies for your grandchildren. Chronic pain dictates if and when you shower, wash your hair, actually get dressed (in real clothes and everything!). And they aren’t kidding when they talk about tender points and trigger spots–what would be an incidental bump for someone else ends up causing such pain that you are now on the DL and the coach has to send someone else in to play for you.

Chronic pain makes all of your choices: will I type emails to my friends, join discussions on Facebook, play solitaire–or watch NetFlix because I can’t do the necessary hand motions to do those other things. Will I be able to concentrate enough to actually read (and retain) a novel? I want to finish crocheting the blanket I am making for my grandson. Begun before his birth, it–and he–are now 3 years old. I also have another grandchild that needs to have a blanket from me–and my grandson will have a sibling next May. That makes me 3 blankets behind.

Chronic pain. Do I have enough energy to essentially ignore the general “normal” level of pain, medicated with my good friend, Vic (Vicodin) that I can cook a hot meal? I was going to be a personal chef; I made gourmet foods–now, I am just a cook. Nothing wrong with being “just a cook”, but for me…it’s a demotion. And if I am not able to cook, I cannot justify spending grocery money on going out for Chinese. But we (too) often end up doing it anyways.

But never mind all of that. I know that having fibro means major–and endless–changes to everything in my life. I get that part. What snuck past me was that having fibro means enough pain that it hurts me to be touched. I’m not talking “punch in the face” touch, I’m talking the gentle pressure of a hand on my arm, the enveloping joy of a hug. Fibro means not extending my hand when meeting new people because the shaking (and the sometimes crushing grip) hurts me. It means not cringing when the sweet puppy leaps up into my lap.

Chronic pain has locked me away from touching, from the sensation of my flesh and someone else’s flesh joined in friendship, comfort–and yes, in making love. My dear Beloved knows that I hurt, that it hurts to be touched. So he’s very careful to … not touch me. He will rub the back of my head as he passes by, or pat my hip when we’re going to sleep. But hugs and kisses, what used to be a steady diet of loving touch…not so much any more.

I am a very tactile person–what a lot of people refer to as “touchy feely”. And chronic pain, damned chronic pain…has made my own body a prison that excludes even the most casual sensation of flesh on flesh. And that most intimate sensation of flesh on flesh doesn’t happen at all… Making love is all about flesh on flesh, the intimate bonding of two people, a ritual of love that strengthens their commitment even as it celebrates their union. Denied to me. By this unending, godsdamned, fucking chronic pain.

I need to be comforted, I need to be touched and petted and yes, physically loved by my husband. I want to hug my children, grandchildren, friends, people at church. I want to shake hands when I meet someone. I’d love a massage. I would LOVE sitting snuggled up to Beloved, with his arm around me. I want a dog.

I literally ACHE with the need to touch and be touched. Skin hunger overwhelms me and I’m starving for human contact. And then Chronic Pain rears its ugly head and reminds me that I will have to choose between more pain with contact…or no contact and no worsening of pain. Pain is a powerful training method, used with incredible success for many years in many different places and circumstances. If this was inflicted by an external source, I’d have something to rebel against, have a revolution to free me again. But alas, my tormentor is me. Well, my body.

And so I ride on the see-saw (teeter totter, depending on where you’re from)…it hurts to be touched … but … it breaks my heart that I am not being touched. Frankly, it all comes down to this one question: Am I willing to accept the pain that the contact will cause because the contact itself will provide emotional healing? Which outweighs the other–the Chronic Pain Monster or the sacred human interaction? And it’s not even so much “will I pay the price” but “CAN I pay the price”.

Did I mention anger, depression, denial, bargaining and acceptance? I only go with 4 out of 5 when it comes to skin contact. There is no acceptance of being untouched, of having no tactile connection with my fellow travelers in life. I am stubborn and I am always, ALWAYS going to choose to be touched. I will deal with the devil of chronic pain because I have to–but I sure as hell am not going to let pain take that away. It’s done its damage to my entire life–changed it completely, added limitation upon limitation. But this is one war it will not win. I cannot let it win–because if I do, I lose my own humanity and life is worthless.

Chronic pain can kiss my ass.

Namaste!

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!

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!

Family, Illness, Fear and Loathing in My Own Life

So this begins with a series of email my mother sent me, emails of political or religious nature; her views and mine do not agree and so after receiving “one more” emotionally inflammatory and incorrect email, I send this as part of my email to her: “If you do not know for yourself that what you send me is true, please don’t send it.  I have an Internet connection and in about 10 minutes, I will have checked it on snopes.com for blatant lies and then sought out reputable (and not paid for by the Koch Brothers or their ilk) sources for the questionable stuff.  You can thank my husband for my new political awareness but can only blame yourself for my inability to swallow horse manure.  Especially when it’s delivered in such grand, large portions.

Republicans AND Democrats will lie to the public.  I acknowledge this, which is why I get most of my news from the UK, Reuters or Al-Jazheera.  Most politicians no longer represent their constituency; they serve corporate masters.  Frankly, the Republicans win the prize for the most blatant disregard of the people they are supposed to be serving (See: OH, NC and TX, and their questionable actions in bringing in some of the most stringent, draconian anti-abortion laws, in direct challenge to Roe v. Wade).  And if you think Mr. Obama hasn’t done what he should have in 6 years, you can blame that on the intransigent, intractable, immovable Republicans in the Congress.  ”

We had reached the point at least a year prior where I had asked her to stop spamming (mass mailing) or particularly sending me religious posts.   So this email, pointing out the errors of her email and asking her to stop sending it is dated July 10.  Well, here’s what followed:

July 22 (hers is in black, my reply is in red.  Please note that I really try to get off these topics with her.)

YOU KNOW THIS WOULD PUT U S BACK IN THE BLACK BUT NO POLITICIAN WOULD DARE SUGGEST ANY OF THE CHANGES.  I LIKE IT  WHAT DO YOU THINK ?

“IF YOU CAN’T FIX IT WITH A HAMMER, YOU’VE GOT AN ELECTRICAL PROBLEM”

WRITTEN BY A 21 YEAR OLD FEMALE –  Wow, this girl has a great plan!  Love the last thing she would do the best.This was written by a 21 yr old female who gets it. It’s her future she’s worried about and this is how she feels about the social welfare big government state that she’s being forced to live in! These solutions are just common sense in her opinion.

This was in the Waco Tribune Herald, Waco , TX

PUT ME IN CHARGE . . .

Put me in charge of food stamps. I’d get rid of Lone Star cards; no cash for Ding Dongs or Ho Ho’s, just money for 50-pound bags of rice and beans, blocks of cheese and all the powdered milk you can haul away. If you want steak and frozen pizza, then get a job.

Rice, beans, cheese and powdered milk are NOT a balanced or healthy diet.  Poor people are fat because they have to buy the food they can afford, which is often carbohydrate intensive and lacking in basic nutrition.  This also leads to health issues like diabetes and heart disease, increasing their cost to the Government through Medicaid or Medicare.  I am very grateful that we receive food stamps and that I can shop for the food I eat, regardless of what other people think about my choices.  And I am not “wasting” that Government benefit when I buy not only steak, but grass fed, pastured beef steak.  I am buying the healthiest food possible and food stamps help us stretch our food budget and still have a healthy, balanced diet.  I shudder to think what we would look like if we lived on rice, beans, cheese and powdered milk.

Put me in charge of Medicaid. The first thing I’d do is to get women Norplant birth control implants or tubal legations. Then, we’ll test recipients for drugs, alcohol, and nicotine. If you want to reproduce or use drugs, alcohol, or smoke, then get a job. 

This is right up there with sterilizing the mentally retarded.  And Florida has already proven that testing the welfare recipients cost a lot more money than the two (yes, TWO) who failed the test are costing the system.  
I WISH I had had Medicaid for the 7 months I was without insurance and before the VA accepted my claim to health benefits.  I went to the free clinic and was able to actually get my fibromyalgia medication through them–or I would have had to do without, which means being untreated and therefore unable to do very much at all.  But WE paid for my pain medications because the free clinic does not dispense narcotics or opiates–you know, because of all those “drug addicts” who are abusing the system.  Oops, not in Fauquier County, they aren’t.

Now I have the interesting problem of getting almost all of my meds through the VA–except for one of my fibro med, arguably the most important, because it’s “not on their formulary”, so they don’t dispense it.  I have a prescription for it, so once again, we will have to pay for it if I am to take it.  Just one more item to come out of Beloved’s SSDI check, our only source of income at the moment.  And Beloved is now without health insurance until his Medicare kicks in, August 2014.  His head meds are paid for, through the free clinic.  But what about his pain meds, his gout meds, his high blood pressure pills?  His prescription acid reflux medication?  We will also be paying for those as we can, and hoping that the free clinic will be able to give us most of them.  But we’re not counting on it.

Incidentally, there are NO “Welfare Queens”, living off the system and laughing it up at taxpayer’s expense.  This is a fabrication, made up by people who think ANY government involvement in our lives is unacceptable–and these same people are usually benefiting in some way from a government program of some sort…ironic.
  
http://www.statisticbrain.com/welfare-statistics/

Yes, sometimes welfare recipients get more money than minimum wage workers.  That’s because the minimum wage is NOT a living wage, and welfare is at least trying to provide enough money to LIVE on.  So “getting a job” might actually mean a standard of living LOWER than being on welfare.  And that is called “poverty”, which nearly HALF of the citizens of this nation live in or at the ragged edge, due partly because minimum wage is NOT a living wage.  The average minimum wage earner must work a 67 hour work week in order to “afford” the necessities of life.

Put me in charge of government housing. Ever live in a military barracks? You will maintain our property in a clean and good state of repair. Your home” will be subject to inspections anytime and possessions will be inventoried.  If you want a plasma TV or Xbox 360, then get a job and your own place.

And here is where this “21 year old female” shows her complete lack of “real world” living.  First off, there is not enough military housing to accommodate the welfare recipients.  Secondly, this seems an awful lot like rounding up the “undesirables” and putting them into concentration camps.  Separate them, keep them from the rest of society.  Make sure they NEVER can integrate with the “rest of us”.  They don’t “deserve” it.  REALLY?  People do NOT choose to be on welfare; it’s simply NOT this program that allows you to live like royalty without some effort on your part.  Most people who have to use welfare are off of it within a year.  Whoopi Goldberg received welfare; J K Rowling also received the comparable British governmental payments before she wrote “Harry Potter”.  It’s not a “hand out”, it’s a “hand up” and it needs to be given with respect and dignity, to help those who need it and to guide them being able to “get a job” (that will pay a living wage; NOT a job at Wal-Mart where they will make about $8/hour AND receive training in how to apply for Social Services in their town.  EACH Wal-Mart store costs the government $900,000 in food stamps and other Social Services BECAUSE they refuse to pay their employees a LIVING wage.  And ALL of the Walton heirs are amongst the top 1% of the richest people in this nation.  How do they sleep at night?  Apparently very well, secure that they will have more money than they ever know what to do with… Incidentally, at least here in VA, Beloved and I are NOT eligible for welfare because we do not have any children.  And before you think that’s just more reason to sterilize welfare recipients, be aware that ONE IN FOUR — TWENTY-FIVE PERCENT — of the children in this nation go to bed hungry because their parents can’t feed them.  We are a Third World country, with a decimated “middle class” and the most unequal wealth distribution in history–and Fox News and their ilk will NOT report this, and the corporate propaganda machines will continue to churn out “Hooray USA” because they don’t want you to realize that everything that made this country great has gone to Hell in a hand basket.  All it takes is a little research and awareness of what is going on around you–look at the people you see in the grocery stores, at the mall…  Look at the people who are walking along the streets, go down to the Social Services offices and watch to see what kind of citizen goes in.  I know here, in our Social Services, it’s predominately white, but there’s young and old, male and female, married, with children or without, every demographic is well represented–except of course for the wealthy.  Why are more people applying to welfare?  Because so many employers have refused to pay a LIVING wage (different than the minimum wage, and the Koch Brothers are working to get rid of the minimum wage) that in order to feed their children, they must go on welfare.  They can’t afford childcare for the 67 hours they’d have to work to get enough money to live on.  And don’t say, “Well, they shouldn’t have had children.”  You did.  And what if, when Lowell was 3 or 4, Dad had lost his job and all he could get was something that paid, oh let’s say $3.75 per hour.  We couldn’t have lived on that–and like you, most of these people had their children when they had a job and thought they would be able to afford a family.  You don’t know the circumstances and to make a blanket statement about (essentially) sterilizing them and denying them the choice…is completely wrong.  Offer birth control, teach how family planning is the best way to take care of your family…but to mandate surgical procedures to get money?  Ummm, NO.

In addition, you will either present a check stub from a job each week or you will report to a “government” job. It may be cleaning the roadways of trash, painting and repairing public housing, whatever we find for you. We will sell your 22 inch rims and low profile tires and your blasting stereo and speakers and put that money toward the “common good..”

I actually have no problem with “workfare”–but I would also take it beyond just making them clean public buildings.  I would offer job training and help in job placement.  So why aren’t more of them getting jobs?  Oh that’s right, many of the jobs that used to be here in the US are now in China.  Or Malaysia, or some place else where labor is cheap and there aren’t things like governmental interference and mandated “minimum wages”.  We used to be a country that manufactured stuff…not any more.  We are a service economy which will inevitably fail.  And people on welfare are doing their best to put food on the table and cloths on their backs, trying to keep a roof over their heads.  They don’t have a lot of “free money” to purchase services.  And it’s not just people on welfare… it’s also those who are barely making ends meet, working longer and harder hours than anyone else in the so-called “First World”, who live in a world of revolving debt, trying to maintain some fiction of having money and those “services” the middle class can afford.  Except that our middle class is dying, squeezed to death by the corporations (“And aren’t you glad that you have a job in these tough economic times?”  — Beloved was asked this at work, so I’m not making it up…it really does get asked) and there’s no end in sight because “corporations are people”. 

Before you write that I’ve violated someone’s rights, realize that all of the above is voluntary. If you want our money, accept our rules  Before you say that this would be “demeaning” and ruin their “self esteem,” consider that it wasn’t that long ago that taking someone else’s money for doing absolutely nothing was demeaning and lowered self esteem. If we are expected to pay for other people’s mistakes we should at least attempt to make them learn from their bad choices. The current system rewards them for continuing to make bad choices.

Once again, the author shows her complete ignorance of why people are on welfare, need Medicaid, are using food stamps.  It’s not about mistakes…it’s about “shit happens” and sometimes you need help–that does NOT come from religious institutions or your neighbors and family.  While many religious groups do offer food pantries or some limited amount of money (a one time payment for rent, for example), they are not set up primarily to aid the poor and can require a certain agreement on the part of the recipients to also participate in their particular religious life.  In other words, you have to “be like us” to be given “our” help.  The same lack of consistent funds is true for family and neighbors–if you even know your neighbors and live close enough to your family to even make their care possible.  

Neither of us is in a position to help the other, for example–no matter how much we want to, our situations preclude any meaningful amount of help.  It’s not like we could move in with you, or you with us; our budgets do not include sending a check to the other.  And that’s okay, because there is a source of consistent and available income IF you qualify…and we have to re-qualify on a regular basis.  So the idea that we could be rich on welfare…doesn’t exist.  There are all kinds of checks and measures to ensure that no one can, simply because of the rumor of the “welfare queen”.  

Beloved and I have a friend who has received an SSDI check his entire life; he is not mentally capable of taking care of himself.  He gets a check for a whopping $400 PER MONTH.  That’s ALL he gets to live on.  He AND his mother get food stamps…$16 per month.  For both of them.  HE is the kind of person more likely to be on government subsistence and it’s not enough.  He can’t own too much, or they’ll take away some of that enormous check he gets. (Sarcasm!)  He has walked from Manassas to Richmond because of paperwork requirements for his “free government hand out”.  He’s been on this system for almost 20 years…and he will tell you that he has NEVER met that “welfare queen” –and he’s seen a LOT of welfare recipients.  If you know where that money is being handed out, let us know, because we’ll take him and go get some for ourselves.

AND While you are on Gov’t subsistence, you no longer can VOTE! Yes, that is correct. For you to vote would be a conflict of interest. You will voluntarily remove yourself from voting while you are receiving a Gov’t welfare check. If you want to vote, then get a job.

This part is particularly stupid and demeaning.  Voting is a RIGHT and unless you have been found guilty of breaking the law, with your rights suspended as a result of that verdict, NO ONE can just “remove” your rights.  Which is really what this girl is talking about: removing your right to have a family (“Life, Liberty and the Pursuit of Happiness”); removing your right to live where you please, removing your right to elect the very people who are overseeing the programs that you count on and are a part of.  I would think that gives you an even stronger incentive to vote.  People on welfare are a part of our society, and we need adequate representation of EVERY person in the elections, not just angry, old, white men who seem determined to remove everyone else’s rights.  (And this young woman, who I am willing to be someone who has never had to worry about where her next meal was coming from, or that her employer wouldn’t pay her a living wage so that she could afford to live on her own–most of the apartments in this area are set up for a “housemates’ situation–because NO ONE can afford to live around here on their own.)

Now, if you have the guts – PASS IT ON…I WOULD REALLY LIKE TO GET THIS BACK, IF EVERYONE SENDS IT, I WILL GET OVER 220 BACK!!!  I WOULD KNOW YOU SENT IT ON!!!

Ummm NO.  I won’t, and not because I lack guts.  I sent it back to you with MY opinions–and cited evidence where necessary, didn’t I?  It reads easy, seems like a good answer to the problems (if “welfare queens” were real, anyways) and she appeals to the mob sentiment of “we” don’t need these programs, but “they” do, so we have to control “them” and limit what they might actually receive.  Well, I am a part of “them”.  I NEED food stamps and I wish I could have medical assurance that I would receive ALL the medications my doctor(s) think I need–and Beloved, too.  He is on SSDI, arguably a form of Social Security, but he has not paid into it his entire life–just the first 20 some years.  So odds are good that he will be paid more “out” than he put “in”.  And we NEED that money.  It’s all we have right now, and $1350 doesn’t go far when your rent is $800.  Part of the reason we’re moving to Eureka is the cost of living is 30-40% LOWER than here in VA.  So our limited and set income will cover more of our costs.  There is every indication that I will also be approved for SSDI–and I haven’t paid in very much at all, comparatively.  And when we get to Eureka, we will RE-apply for food stamps (indications are that we will have to wait a year, to establish residency)…and we may not need to if we find that we can get through that year without them.  When Peter was still in the military, we were VERY eligible for food stamps–but we chose not to get them because we knew that we could live on what he was making.  That’s not so true now, which is not just a shame, but a damned shame to say about active duty military people–like William and Maria.  

I would offer this suggestion: please stop sending me political propaganda of any sort, and I’ll stop correcting it with cited sources and sending it back.  Just so we’re clear on this, I voted for Mr. Obama; I don’t think he’s somehow infallible–he’s a politician and has his own failings–but I do think that he was a MUCH better choice than that man with an elevator for his cars and the idea that an income of $250,000 per year is “middle class”(Source for actual statistics of “middle class” is wikipedia, here: http://en.wikipedia.org/wiki/American_middle_class where there is a table down the page comparing various demographs…and NO WHERE on that chart does the number 250,000 appear.  Talk about “out of touch” with the average American.)  
Mr. Obama may be “just a community leader” but we need community now, more than ever.  We have become so divisive, us versus them, no matter what the difference is that we’re talking about…

Regardless of your views on abortion, the very notion that a roomful of old white men should be making ANY decisions about a woman and her medical choices is outrageous–and dangerous.  This whole anti-choice program is merely the start to remove HUMAN rights, beginning with females.  We have already effectively lost many of our 4th Amendment rights thanks to the Patriot Act…which is somehow not very Patriotic but much more about taking away the citizens’ rights.  In the meantime, more and more rights are being handed to corporations–don’t even start me on Monsanto, which I consider to be the most evil thing in the Universe at this point in time.  Like our individual choices about religion, politics is an area that we will probably not agree on, so it’s just better to let it go. 

And then began the veritable flood of religious and political emails, as offensive as they could get:

(Picture)F R O G we all need one.
I do hope this returns to ME the sender! Isn’t the little green guy sort of cute?(Picture)

I was told a story about a lady in the hospital who was near death, when a Chaplain came to visit her.This Chaplain was a young female, with long blond hair. She listened to the lady who was ill and left her a small gift for comfort, a tiny ceramic frog.The next day a friend from church came to visit.The lady told her friend about the beautiful young Chaplain who had come to visit her. The friend was so impressed with the way her friend had improved and felt the need to talk to the young Chaplain. In her search to find the young girl, she was repeatedly reassured that their chaplains are never very young, and that there was never a girl that fit the description given.
Upon returning to her friend in the hospital, a visiting nurse entered the room and noticed the ceramic frog.The nurse made the comment “I see you have a guardian angel with you.” As she held the frog we asked why she made the comment and we were informed what the frog stood for:

“Forever Rely On God”

To The World You Might Be One Person;
But To One Person You Might Be the World.
You have been Tagged by the Froggy,

which means you are a great friend!!

You will BE BLESSED if you send this to more people.
Friends are quiet Angels who lift us to our feet when our wings have trouble remembering how to fly.
Hi Lord, it’s me. Things are getting bad here, gas prices are too high, too few jobs, too much disrespect and violence, food and heating costs too high. I know some have taken You out of our schools, government & even Christmas. But Lord I’m asking you to come back and re-bless America . We really need You.Thanks Lord, I love You!

IN GOD WE TRUST

The Lord says when 2 or more are gathered in My Name, there I will be also!!! Let’s see how far this goes. Please pass this on…

Please God… please Bless America again.

GOD BLESS AMERICA , PLEASE, HELP KEEP THIS COUNTRY FREE

Then this arrived:

Subject: A country Founded by Geniouses but Run by Idiots

Attributed to Jeff Foxworthy:

If you can get arrested for hunting or fishing without a license, but not for entering and remaining in the country illegally — you might live in a nation that …was founded by geniuses but is run by idiots.

If you have to get your parents’ permission to go on a field trip or to take an aspirin in school, but not to get an abortion — you might live in a nation that was founded by geniuses but is run by idiots.

If you MUST show your identification to board an airplane, cash a check, buy liquor, or check out a library book and rent a video, but not to vote for who runs the government — you might live in a nation that was founded by geniuses but is run by idiots.

If the government wants to prevent stable, law-abiding citizens from owning gun magazines that hold more than ten rounds, but gives twenty F-16 fighter jets to the crazy new leaders in Egypt — you might live in a nation that was founded by geniuses but is run by idiots.

If, in the nation’s largest city, you can buy two 16-ounce sodas, but not one 24-ounce soda, because 24-ounces of a sugary drink might make you fat — you might live in a nation that was founded by geniuses but is run by idiots.

If an 80-year-old woman or a three-year-old girl who is confined to a wheelchair can be strip-searched by the TSA at the airport, but a woman in a burka or a hijab is only subject to having her neck and head searched — you might live in a nation that was founded by geniuses but is run by idiots.

If your government believes that the best way to eradicate trillions of dollars of debt is to spend trillions more — you might live in a nation that was founded by geniuses but is run by idiots.

If a seven-year-old boy can be thrown out of school for saying his teacher is “cute,” but hosting a sexual exploration or diversity class in grade school is perfectly acceptable — you might live in a nation that was founded by geniuses but is run by idiots.

If hard work and success are met with higher taxes and more government regulation and intrusion, while not working is rewarded with Food Stamps, WIC checks, Medicaid benefits, subsidized housing, and free cell phones — you might live in a nation that was founded by geniuses but is run by idiots.

If the government’s plan for getting people back to work is to provide incentives for not working, by granting 99 weeks of unemployment checks, without any requirement to prove that gainful employment was diligently sought, but couldn’t be found — you might live in a nation that was founded by geniuses but is run by idiots.

If you pay your mortgage faithfully, denying yourself the newest big-screen TV, while your neighbor buys iPhones, time shares, a wall-sized do-it-all plasma screen TV and new cars, and the government forgives his debt when he defaults on his mortgage — you might live in a nation that was founded by geniuses but is run by idiots.

If being stripped of your Constitutional right to defend yourself makes you more “safe” according to the government — you might live in a nation that was founded by geniuses but is run by idiots.

What a country!

How about we give God a reason to continue blessing America!

Then I had to deal with this:

67 years later!

What happened to the radiation that lasts thousands of years?

HIROSHIMA  1945
We all know that Hiroshima and Nagasaki were destroyed in August 1945 after the explosion of atomic bombs.
However, we know little about the progress made by the people of that land during the past 67 years.
HIROSHIMA – 67 YEARS LATER

(Series of pictures, all modern and fabulous looking)DETROIT- 65 YEARS AFTER HIROSHIMA

(Series of Pictures, all decrepit and ruined)

What has caused more long term destruction – the A-bomb, or Government welfare programs created to buy the
votes of those who want someone to take care of them
?

Japan does not have a welfare system.  (That is an out and out lie: http://en.wikipedia.org/wiki/Welfare_in_Japan )
Work for it or do without.

These are possibly the 5 best (BIGGEST LIES) sentences you’ll ever read and all applicable to this experiment:

1. You cannot legislate the poor into prosperity by legislating the wealthy out of prosperity.
2. What one person receives without working for, another person must work for without receiving.
3. The government cannot give to anybody anything that the government does not first take from somebody else.
4. You cannot multiply wealth by dividing it!
5. When half of the people get the idea that they do not have to work because the other half is going to take care of them, and when the other half gets the idea that it does no good to work because somebody else is going to get what they work for, that is the beginning of the end of any nation.
Can you think of a reason for not sharing this? Neither could I.

Next, I had to read this:

OMG!!!!!!!!!!!!!!!!  (Which I sincerely doubt my mother even knows what it means, since she does not “take the Lord’s name in vain”)

http://www.youtube.com/watch?v=FXNZFe63brY

THERE ARE NO SURPRISES HERE FOR THOSE OF US WHO SAW IT COMING–

Look who’s new in the white house!Arif Alikhan – Assistant Secretary for Policy Developmentfor the U.S. Department of Homeland Security

 Mohammed Elibiary – Homeland Security Adviser

Rashad Hussain – Special Envoy to the (OIC) Organization of the Islamic Conference

Salam al-Marayati – Obama Adviser -founder Muslim Public Affairs Council and its current executive director

Imam Mohamed Magid – Obama’s Sharia Czar – Islamic Society of North America

Eboo Patel – Advisory Council on Faith-Based Neighborhood Partnerships

This is flat out scary!!!!   The foxes are now living in the hen house…Now ask me why I am concerned!!!

Then this, while interesting, not going to change my religious views:

Subject: God vs. Science–thought provoking! Read until the very surprise ending.

This one has been around many times but is still good.

Don’t give up on this one too soon – it does an about face.  🙂

 God vs. Science

“Let me explain the problem science has with religion.”The atheist professor of philosophy pauses before his class and then asks one of his new students to stand.‘You’re a Christian, aren’t you, son?’

‘Yes sir,’ the student says.

‘So you believe in God?’

‘Absolutely ‘

‘Is God good?

‘Sure! God’s good.’

‘Is God all-powerful? Can God do anything?’

‘Yes’

‘Are you good or evil?’
‘The Bible says I’m evil.’
The professor grins knowingly. ‘Aha! The Bible! He considers for a moment. ‘Here’s one for you. Let’s say there’s a sick person over here and you can cure him. You can do it. Would you help him? Would you try?’

‘Yes sir, I would.’
‘So you’re good…!’
‘I wouldn’t say that.’
‘But why not say that? You’d help a sick and maimed person if you could. Most of us would if we could. But God doesn’t.’
The student does not answer, so the professor continues. ‘He doesn’t, does he? My brother was a Christian who died of cancer, even though he prayed to Jesus to heal him. How is this Jesus good? Can you answer that one?’
The student remains silent. ‘No, you can’t, can you?’ the professor says. He takes a sip of water from a glass on his desk to give the student time to relax. ‘Let’s start again, young fella. Is God good?’
‘Er..yes,’ the student says.
‘Is Satan good?’
The student doesn’t hesitate on this one.. ‘No.’
‘Then where does Satan come from?’
The student falters. ‘From God’
‘That’s right. God made Satan, didn’t he? Tell me, son. Is there evil in this world?’
‘Yes, sir.’
‘Evil’s everywhere, isn’t it? And God did make everything, correct?’
‘Yes’
‘So who created evil?’ The professor continued, ‘If God created everything,then God created evil, since evil exists, and according to the principle that our works define who we are, then God is evil.’
Again, the student has no answer. ‘Is there sickness? Immorality? Hatred? Ugliness? All these terrible things, do they exist in this world?’
The student squirms on his feet. ‘Yes.’
‘So who created them ?’
The student does not answer again, so the professor repeats his question. ‘Who created them?’ There is still no answer. Suddenly the lecturer breaks away to pace in front of the classroom. The class is mesmerized. ‘Tell me,’ he continues onto another student. ‘Do you believe in Jesus Christ, son?’
The student’s voice betrays him and cracks. ‘Yes, professor, I do.’
The old man stops pacing. ‘Science says you have five senses you use to identify and observe the world around you. Have you ever seen Jesus?’
‘No sir. I’ve never seen Him.’
‘Then tell us if you’ve ever heard your Jesus?’
‘No, sir, I have not.’
‘Have you ever felt your Jesus, tasted your Jesus or smelt your Jesus? Have you ever had any sensory perception of Jesus Christ, or God for that matter?’
‘No, sir, I’m afraid I haven’t.’
‘Yet you still believe in him?’
‘Yes’
‘According to the rules of empirical, testable, demonstrable protocol, science says your God doesn’t exist… What do you say to that, son?’
‘Nothing,’ the student replies.. ‘I only have my faith.’
‘Yes, faith,’ the professor repeats. ‘And that is the problem science has with God. There is no evidence, only faith.’
The student stands quietly for a moment, before asking a question of His own. ‘Professor, is there such thing as heat? ‘
‘ Yes.
‘And is there such a thing as cold?’
‘Yes, son, there’s cold too.’
‘No sir, there isn’t.’
The professor turns to face the student, obviously interested. The room suddenly becomes very quiet. The student begins to explain. ‘You can have lots of heat, even more heat, super-heat, mega-heat, unlimited heat, white heat, a little heat or no heat, but we don’t have anything called ‘cold’. We can hit down to 458 degrees below zero, which is no heat, but we can’t go any further after that. There is no such thing as cold; otherwise we would be able to go colder than the lowest -458 degrees. Everybody or object is susceptible to study when it has or transmits energy, and heat is what makes a body or matter have or transmit energy. Absolute zero (-458 F) is the total absence of heat. You see, sir, cold is only a word we use to describe the absence of heat. We cannot measure cold. Heat we can measure in thermal units because heat is energy. Cold is not the opposite of heat, sir, just the absence of it.’
Silence across the room. A pen drops somewhere in the classroom, sounding like a hammer.
‘What about darkness, professor. Is there such a thing as darkness?’
‘Yes,’ the professor replies without hesitation. ‘What is night if it isn’t darkness?’
‘You’re wrong again, sir. Darkness is not something; it is the absence of something. You can have low light, normal light, bright light, flashing light, but if you have no light constantly you have nothing and it’s called darkness, isn’t it? That’s the meaning we use to define the word. In reality, darkness isn’t. If it were, you would be able to make darkness darker, wouldn’t you?’
The professor begins to smile at the student in front of him. This will be a good semester. ‘So what point are you making, young man?’
‘Yes, professor. My point is, your philosophical premise is flawed to start with, and so your conclusion must also be flawed.’
The professor’s face cannot hide his surprise this time. ‘Flawed? Can you explain how?’
‘You are working on the premise of duality,’ the student explains. ‘You argue that there is life and then there’s death; a good God and a bad God. You are viewing the concept of God as something finite, something we can measure. Sir, science can’t even explain a thought.’ ‘It uses electricity and magnetism, but has never seen, much less fully understood either one. To view death as the opposite of life is to be ignorant of the fact that death cannot exist as a substantive thing. Death is not the opposite of life, just the absence of it.’ ‘Now tell me, professor. Do you teach your students that they evolved from a monkey?’
‘If you are referring to the natural evolutionary process, young man, yes, of course I do.’
‘Have you ever observed evolution with your own eyes, sir?’
The professor begins to shake his head, still smiling, as he realizes where the argument is going. A very good semester, indeed.
‘Since no one has ever observed the process of evolution at work and cannot even prove that this process is an on-going endeavor, are you not teaching your opinion, sir? Are you now not a scientist, but a preacher?’
The class is in uproar. The student remains silent until the commotion has subsided. ‘To continue the point you were making earlier to the other student, let me give you an example of what I mean.’ The student looks around the room. ‘Is there anyone in the class who has ever seen the professor’s brain?’ The class breaks out into laughter. ‘Is there anyone here who has ever heard the professor’s brain, felt the professor’s brain, touched or smelt the professor’s brain? No one appears to have done so… So, according to the established rules of empirical, stable, demonstrable protocol, science says that you have no brain, with all due respect, sir.’ ‘So if science says you have no brain, how can we trust your lectures, sir?’
Now the room is silent. The professor just stares at the student, his face unreadable. Finally, after what seems an eternity, the old man answers. ‘I Guess you’ll have to take them on faith.’
‘Now, you accept that there is faith, and, in fact, faith exists with life,’ the student continues. ‘Now, sir, is there such a thing as evil?’ Now uncertain, the professor responds, ‘Of course, there is. We see it Everyday. It is in the daily example of man’s inhumanity to man. It is in The multitude of crime and violence everywhere in the world. These manifestations are nothing else but evil.’
To this the student replied, ‘Evil does not exist sir, or at least it does not exist unto itself. Evil is simply the absence of God. It is just like darkness and cold, a word that man has created to describe the absence of God. God did not create evil. Evil is the result of what happens when man does not have God’s love present in his heart. It’s like the cold that comes when there is no heat or the darkness that comes when there is no light.’ 
The professor sat down.

If you read it all the way through and had a smile on your face when you finished, mail to your friends and family with the title ‘God vs. Science’
PS: The student was 
Albert Einstein.   Albert Einstein wrote a book titled ‘God vs. Science‘ in 1921…

And knowing that we are moving to Eureka CA in November, she sends this “joke”:

CALIFORNIA:

The Governor of California is jogging with his dog along a nature trail.

A coyote jumps out and attacks the Governor’s dog, then bites the Governor.

1.  The Governor starts to intervene, but reflects upon the movie “Bambi” and then realizes he should stop because the coyote is only doing what is natural.

2.  He calls animal control.  Animal Control captures the coyote and bills the State $200 testing it for diseases and $500 for relocating it.

3.  He calls a veterinarian.  The vet collects the dead dog and bills the State $200 testing it for diseases.

4.  The Governor goes to hospital and spends $3,500 getting checked for diseases from the coyote and on getting his bite wound bandaged.

5.  The running trail gets shut down for 6 months while Fish & Game conducts a $100,000 survey to make sure the area is now free of dangerous animals.

6.  The Governor spends $50,000 in state funds implementing a “coyote awareness program” for residents of the area.

7.  The State Legislature spends $2 million to study how to better treat rabies and how to permanently eradicate the disease throughout the world.

8.  The Governor’s security agent is fired for not stopping the attack.  The State spends $150,000 to hire and train a new agent with additional special training re: the nature of coyotes.

9. PETA protests the coyote’s relocation and files a $5 million suit against the State.

TEXAS:

The Governor of Texas is jogging with his dog along a nature trail.  A Coyote jumps out and attacks his dog.

1. The Governor shoots the coyote with his State-issued pistol and keeps jogging.  The Governor has spent $0.50 on a .45 ACP hollow point cartridge.

2. The Buzzards eat the dead coyote.

And that, my friends, is why California is broke (NOT TRUE) and Texas is not. (BUT TAKING ALL OF THE FEDERAL MONEY IT CAN; PROBABLY THE MOST GRABBY OF ALL THE STATES)

Stupid Email that only shows racism and disrespect/hatred of Mr. Obama:

Subject: Let’s Move to Mexico

Dear President Obama:

I’m planning to move my family and extended family into Mexico for my health, and I would like to ask you to assist me.  We’re planning to simply walk across the border from the U.S. into Mexico , and we’ll need your help to make a few arrangements.  We plan to skip all the legal stuff like visas, passports, immigration quotas and laws.   I’m sure they handle those things the same way you do here. So, would you mind telling your buddy, President Pena Nieto, that I’m on my way over?
Please let him know that I will be expecting the following:

1. Free medical care for my entire family.
2. English-speaking government bureaucrats for all services I might need, whether I use them or not.
3. Please print all Mexican Government forms in English.
4. I want my grandkids to be taught Spanish by English-speaking (bi-lingual) teachers.
5. Tell their schools they need to include classes on American culture and history.
6. I want my grandkids to see the American flag on one of the flag poles at their school.
7. Please plan to feed my grandkids at school for both breakfast and lunch.
8. I will need a local Mexican driver’s license so I can get easy access to government services.
9. I do plan to get a car and drive in Mexico , but I don’t plan to purchase car insurance, and I probably won’t make any special effort to learn local traffic laws.
10. In case one of the Mexican police officers does not get the memo from their president to leave me alone, please be sure that every patrol car has at least one English-speaking officer.
11. I plan to fly the U.S. flag from my housetop, put U S. flag decals on my car, and have a gigantic celebration on July 4th. I do not want any complaints or negative comments from the locals.
12. I would also like to have a nice job without paying any taxes, or have any labor or tax laws enforced on any business I may start.
13. Please have the president tell all the Mexican people to be extremely nice and never say critical things about me or my family, or about the strain we might place on their economy.
14. I want to receive free food stamps.
15. Naturally, I’ll expect free rent subsidies.

16. I’ll need income tax credits so that although I don’t pay Mexican taxes, I’ll receive money from the government.
17. Please arrange it so that the Mexican Government pays $4,500.00 to help me buy a new car.
18. Oh yes, I almost forgot, please enroll me free into the Mexican Social Security program so that I’ll get a monthly income in retirement.
I know this is an easy request because you already do all these things for all his people who walk over to the U.S. from Mexico . I am sure that President Nieto won’t mind returning the favor if you ask him nicely.

Thank you so much for your kind help.  You’re the man!!!

And then her best, most offensive and disgusting email arrived.  SO many lies and half-truths, so much vitriol and hatred towards LGBT community….I could barely read the first part before I had to just send her another email, slightly less polite.

Brilliance in Three Parts

Part I

A. Back off and let those men who want to marry men, marry men.

B. Allow those women who want to marry women, marry women.

C. Allow those folks who want to abort their babies, abort their babies.

D. In three generations, there will be no Democrats.

I love it when a plan comes together!

Part II

10 Poorest Cities in America and how did it happen?

City, State, % of People Below the Poverty Level

1. Detroit , MI 32.5%

2. Buffalo , NY 29.9%

3. Cincinnati , OH 27.8%

4. Cleveland , OH 27.0%

5. Miami , FL 26.9%

5. St. Louis , MO 26.8%

7. El Paso , TX 26.4%

8. Milwaukee , WI 26.2%

9. Philadelphia , PA 25.1%

10. Newark , NJ 24.2%

What do the top ten cities (over 250,000) with the highest poverty rate all have in common?

Detroit , MI (1st on the poverty rate list) hasn’t elected a Republican mayor since 1961

Buffalo , NY (2nd) hasn’t elected one since 1954

Cincinnati , OH – (3rd) since 1984

Cleveland , OH – (4th) since 1989

Miami , FL – (5th) has never had a Republican mayor

St. Louis , MO – (6th) since 1949

El Paso , TX – (7th) has never had a Republican mayor

Milwaukee , WI – (8th) since 1908

Philadelphia , PA – (9th) since 1952

Newark , NJ – (10th) since 1907

Einstein once said, ‘The definition of insanity is doing the same thing over and over again and expecting different results.’

It is the poor who habitually elect Democrats . . . yet they are still POOR.

Part III A MESSAGE TO PRESIDENT OBAMA—FROM ANOTHER PRESIDENT.

“You cannot help the poor by destroying the rich.

You cannot strengthen the weak by weakening the strong.

You cannot bring about prosperity by discouraging thrift.

You cannot lift the wage earner up by pulling the wage payer down.

You cannot further the brotherhood of man by inciting class hatred.

You cannot build character and courage by taking away people’s initiative and independence.

You cannot help people permanently by doing for them, what they could and should do for themselves.”

. . . . Abraham Lincoln

“I’ve tried to ask nicely.  Now I am telling you.  DO NOT SEND ME THIS KIND OF STUFF.    I have tried to point out to you that I do not hold the same political views and that I find this offensive–and having told you that, I find this not only offensive, but incredibly, thoughtlessly, purposefully offensive.  I consider sending me stuff like this the same as sending me the nastiest dirtiest porn you can find–and frankly, I’d prefer that.  

I lack the energy to deal with continual assaults on my beliefs–religious, political or otherwise, especially when those attacks consist of biased opinion, slanted evaluations and unthinking bigotry, fear, hate, xenophobia, and religious zealotry.  And I will stop reading emails that affect me this way.  Which means that I will stop reading YOUR emails if they contain that kind of material.  And if I can’t tell from the subject line and open them to find it, well then I will have to stop reading ALL of your emails.  

I really don’t want to have to do this, but as I said, I have tried asking nicely.

Send me emails that talk about what you and Dad are doing, what you made for dinner, who you had over for lunch.  Tell me about what’s going on in the neighborhood, your health…in fact, talk about ANYTHING but politics and religion. “

Called to let them know that Beloved was in hospital: Aug 4.  Got a dressing-down (chastisement) from my FATHER about how I had talked (written) to my MOTHER.  NOT A WORD ABOUT BELOVED: NO INQUIRIES ABOUT HIS HEALTH, HOW I WAS HOLDING UP, NOTHING.  Just an old fashioned “talking to”.

So on Aug 5 I sent this email to my mother:
Just letting you that Beloved is in surgery for an endoscopy and they are looking for both growths and lesions.Then it’s probably real surgery to remove the gall bladder because he also has a 3cm gallstone. 
I called and told Dad but getting a lecture about how I had spoken to you was both insensitive and not appropriate at that time. I am an adult now and frankly, I spoke to you as I would have to anyone who persisted in sending me the emails that you had. I am not a child to be reprimanded for not agreeing with you.  If this is a problem for you, then it is your problem not mine. So how much we communicate is up to you.
And right now, I am dealing with my husband being in the hospital and am having all my support being friends and HIS family. It’s up to you.  K  (And it’s now the 8th and I haven’t heard a word from her.)

I really could have gone my whole life not knowing that my parents were so wrapped up in their religious and political views that they have lost all emotional and sympathetic connections to other people.  I have said for years that my parents shouldn’t have had children, as they really don’t like them…but I did not understand that the dislike went this deep.  Coming on top of a week of my dearly Beloved being so ill was devastating.

I had a friend who might have been more than a friend but we never had the chance to find out because he died of stomach cancer 8 or 9 months after we met.  His last words to me were “I love you”.  Having worked in the medical field as a nurse’s aide for 5 years, “looking for growths” has a fuller, more dreadful meaning to me: looking for cancer is the true explanation.  I was terrified I’d come back to find Beloved diagnosed with that cancer and I’d lose him.

I did not need to deal with the psychology of parents who couldn’t even offer sympathy…on the other hand, it cuts that frayed cord just that much more.  I haven’t seen them in almost 4 years; we talk barely once a month.  We are polite strangers and the truth is now easier to face than it was and it really boils down to this: if you weren’t related to this person, would you tolerate their behavior?  (Answer: No, I would not.)

All that matters now is that my sweet Beloved is home, getting better and preparing for outpatient gall bladder removal.  He wants to mount the 3 cm gall stone (that really is the size of a golf ball, you know) and beneath the stone have a plaque that reads “That’s no space station, that’s a gall stone!”  And we’re still going to Eureka, especially now that my stupid LTD insurance has FINALLY kicked in…oh, guess we were wrong, we’ll reverse the decision and pay it out–and since Fibro is no longer a ‘self-diagnosed’ disease, that means a pay out of not just 2 years…but 5.  Suck that!

I have what truly matters: a man who loves me as much as I love him; friends and my chosen family that are concerned and have been so kind and eager to help this week; and 3 months to get ready to move.  Thanks to all for the good thoughts and positive, healing energy.  Let’s keep that up for his surgery.  And blessings to those who understand the whole blessing process.

Namaste!!

UPDATE:  I am seriously going through the Kubler-Ross steps of grieving: Anger, depression, denial, bargaining and acceptance.  My parents, in their own way, have made this easier if I just go with the fact that they are old, and therefore, treat them as if they had died–and in their own way, they have died to me.

Makes it REAL easy to get rid of MORE things before moving, as I no longer have to acknowledge possession of this item or that and I feel no remorse or pain in getting rid of “heirloom” items.  Indeed, I will see just how much money I can get for them.  I do not need them any more to remind me of the fantasy I’ve been holding onto.  I don’t need to justify getting rid of family heirlooms, I don’t need to apologize for not keeping all of the various bits of stuff they have sent me.  My birth stone is peridot; I truly hate it.  Now I can get rid of every piece of jewelry that has it, that they gave me, without a qualm.  I will keep the things that mean something deep and personal to me: my grandmother’s amethyst ring, and HER mother’s amethyst ring.  The Goddess necklaces that my dear friends bought the parts and made just for me.  The diamond hugs and kisses tennis bracelet that my beloved husband put on my arm when we married.

Anyone want a peridot pendat?  A rather elaborate ruby ring?  I am keeping my great-grandmother’s quilt.  Just saying.  But there’s going to be a lot of other things that no longer have any indecision about keeping or getting rid of.  And I look forward to creating my own beloved family once we move to Eureka (I found it!) CA.

August 19:  Still not a word to be heard from my parents.  Beloved had his gall bladder removed, but pathology wouldn’t let him have the stone, so he has to live without it–and without the gall bladder either.  He tolerated the surgery well, but still has intractable vomiting and is not holding down much of anything.  Basically, he’s not eaten for almost a month now.  Every time he could get a saline IV going, it helped and he began to improve–and that was the orders from his surgeon.  Unfortunately, every time his surgeon’s associate GI doctor came on duty, he pulled the IV and Beloved regressed AGAIN.  Last Saturday (2 days ago), I came home to shower and get some clean clothes–having packed for what should have been an overnight stay and had been two weeks, I needed both–and my dearest Beloved called me and said, “Come and get me, they are putting me out.”  They waited until I had left the hospital (considering I had been at his bedside 24 x 7); then they gave him delaudid (making him heavily medicated and legally incapacitated, ie, not able to sign himself out of the hospital) and then told him he was being discharged.

I went and got him and brought him home.  In 24 hours, the only liquid he was able to hold down was about 6 ounces of local whole milk (pasteurized but NOT homogenized, as close to fresh out of the cow’s teat as a person can get around here!).  He did void over 1500cc of urine, which is good, sort of…and in 18 hours, slept about 14, which he desperately needed, having been awakened at least every 2 hours for the prior 3 weeks.  That’s called sleep deprivation and is a form of torture because you never reach REM stage of sleep–it’s really bad for you.  So almost a month later, several forms of what could be considered torture (lack of sleep, unnecessary procedures, lack of IV hydration for appropriate amounts of time), he’s just as sick, possibly sicker and still throwing up.

All the people at Fauquier hospital (And yes, I am naming names, because that’s where he was for all that time and that’s where all this bull shit went on–to the point where I can barely refrain from calling it the “FuckYouHere Hospital”–hereafter referred to as FYH Hospital) kept telling him that he needed to see a GI doctor.  They had two, whom he had seen–and they were soooooo fascinated by his lapband (a form of weight loss, Google it because I’m not going to try to explain it here)…and they both wanted to remove it, even though THEIR procedure of contrast imagery proved it was right were it belonged, in textbook location.  So “see a GI doctor” got changed ever so slightly to “see YOUR GI doctor” and a light went on in his head!  He had had a wonderful GI doctor, back when before having the lapband inserted, a doctor that he trusted and would be thrilled to return to his care.

EXCEPT…that meant going to Centreville to the doctor’s office, or (and this was the end result and more likely option anyways), going to Fair Oaks Hospital–both of which are farther and farther away from our house, harder to get to with a car that is ummmm about as sick as Beloved.  But anyway…Sunday evening, I called the doctor’s number, got the answering service with the name and number of the doctor who was covering for him.  Called THAT doctor; explained what was going on.  His immediate orders?  Go to the hospital and get on an IV!  And he told me that Beloved’s GI Doctor (who has a super hero name: Lance Lasner) would be in the office Monday morning.

I tried to find someone who could come to our door and take Beloved up to Manassas, to his parents house, so that they would then take him to the hospital.  No luck, so I ended up driving him up there…and feeling such guilt at not going with him–but I am so worn out, so exhausted from the past 3 weeks–I haven’t really slept more than a couple of hours at a go either…  I was worried about my driving that far, in the dark (which I have problems with anyways) and thank the gods, my husband is a most understanding man and did not hold it against me, and in fact, ordered me home to sleep, perchance to dream.

And then we found out this morning that our superhero doctor is on vacation through the end of this week.  Oops.  SOOOOO there’s another doctor covering for him and I contacted his office and spoke to his nurse/receptionist? and poured out the story to her.  She was so kind and so efficient.  “We will get the record from the other hospital and I will let Dr. Substitute know that he has a consultation at the hospital this morning.”

Needless to say, I have been in contact most of the day with Beloved.  (Mostly because I was smart enough to look for his phone when I came home to shower so he has it again.)  They have put him on an IV, cranked it open wide (drip rate is much higher than usual rate of flow) and are giving him IV meds where they can–to include Valium!  YAY! Get that pain level down, down, down.  The nurses and doctors at Fair Oaks have been expressing disbelief at the methods and actions of their ahem so-called colleagues at FYH Hospital and bluntly, I already have the name and contact information for a good malpractice lawyer.

Beloved is a little concerned that the doctors at Fair Oaks are also enthralled by the lapband and seem to want to take it out–but they do insist on running the (same) test to ensure that it is still in the place it’s supposed to be and not moved, since his vomiting has been…energetic.  So he’s supposed to have some sort of contrast imagery done this evening.  They have already begun the paperwork to see how much money Medicaid can throw at this–instead of throwing forms at us and leaving, as they did in the other hospital.  And they aren’t treating him differently because he doesn’t have money, which it seems like that particular issue DID make a difference at FYH Hospital.

And somewhere in all of that medical stuff, my Beloved managed to arrange for our friend, Little Miss (LM) to come over here tonight, stay the night and then drive me up to Fair Oaks tomorrow.  I can take all of his meds (which hopefully, he’ll be able to take by mouth and keep down then).  Since she’s off of work, it’s not costing her anything but time–and I will more than happy to fill the gas tank and feed her.  I will also be glad to see her.  I am weepy and angry and find myself talking out loud to myself–in a lovely British accent, I might add.  I also have lost 5 more pounds in the past 3 weeks.  It’s a great diet, other than the side effects of having your most Beloved love in the hospital and no one can figure out why.  I can only imagine how much weight he’s lost.

I am terrified that he’s going to die, that this will kill him before they can figure out what the hell is going on.  He insists that he will not die, that he’s too stubborn and not that sick…  I can only hope that he is right and that I am completely wrong because I don’t want to be right, not at all.  My feelings of terror and hopelessness are lessened by the growing assurance that he is finally in the right place, with the right medical people around him–and if nothing else, our superhero GI doctor will be back next week.  We can certainly hold on that long!  And Beloved would tell you that no one knows his gut like Dr. L!

So that’s where things stand now.  I could keep writing, but it begins to repeat and just be all morose and stuff, so I’ll stop here and hope, hope, hope that my next update will be a happy one!  Blessings and Namaste until then!

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!

It’s All in Your Head

You’ve read a lot about me and my fibromyalgia.  I’ve tried to share what it’s like to live with a chronic disease that affects my neurological system and by association, affects every part of me at some point or another.  This post is not about fibromyalgia.  It’s about my Beloved and his chronic disease that affects his entire life.  (And mine, by association.)

He doesn’t have fibro.  My husband has been diagnosed as Bipolar, Category 1, with OCD; he also has stress anxiety disorder and PTSD (Post Traumatic Stress Disease).  He actually got upgraded since his initial diagnosis, several years ago, was Bipolar Category 2, without all the other letters after it.  What caused the change?  Six years of working for a company that uses the Dorito method of dealing with employees: “Crunch them up, it’s okay, we’ll just get more”.  Almost 3 years of working for a manager whose first act upon taking the position was to inform Beloved’s specialty team that “they didn’t belong here” and that she would “shut them down and make them go away”.  And she did all she could to kill the team, including lying to her superiors about their performance.  She would change the metrics required for their job, even including calls per hour–at an INbound call center.  How can you require a certain number of phone calls by your people when that is totally dependent on the clients calling in and there is no way for an agent to make that happen?

An anonymous complaint was filed, citing hostile work environment (duh) and HR sent a representative down from the head office.  There was a meeting with the entire team (and NO managers or supervisors) and the HR rep asked what had been going on.  When she was told, she wavered between extreme anger and complete disbelief.  Beloved was very open and told her all about the problems–but he was having increasing anxiety and fear that the management level would think he had ratted them out–since he had always been very vocal about the problems as they were happening.  He was afraid they would retaliate, even though they would have then gotten into trouble–but that wouldn’t have helped him if they had fired him.  Hooray for VA, a “right to work” state.

Suffice it to say that in the long run, the negative effects on the team were ameliorated as much as possible, although the team itself was still dissolved.  The manager in question was told to resign and every effort was made to keep the team employed, which would not have happened if the complaint had not been filed.

However…that did not help my Beloved. The day after the meeting, he was showered and dressed and ready to leave for work.  Stretching his hand out to pick up the car keys, he froze and his hand began to shake.  He could not, just could not pick up those keys.  He could not return to work and was so overwrought that he was crying and almost hysterical (but in a quiet way, not screaming).  He was having a first class anxiety attack.

Now remember, feelings are created by chemicals in your brain.  You have no control over what chemicals may flood your synapses at any moment and can only react to the feelings they induce.  It’s vital to understand that this is a physical, CHEMICAL process we are talking about. This has NOTHING to do with a person’s character, personality or their “mind”, or how they think.  This is just the same thing as the pancreas creating insulin to break down the sugar someone has ingested.  It’s a PHYSICAL thing. In this case, his brain was being flooded with feelings of fear, triggering the infamous “fight or flight” mode–but without an apparent reason, it caused essentially an alternating “go-no go” loop in the chemicals which completely shut down his ability to function.

My first act was to calm him as best I could, then call our PCP.  I insisted on an appointment that day and they were able to squeeze him in with our alternate physician. He had two more anxiety attacks during the time between the first one and arriving at the doctor’s office that afternoon.  He was talking fast but not making much sense, trying to describe what was going on but it was changing so fast that he couldn’t keep up.  It’s a bipolar condition known as “mixed state”–when you are manic, or energized, enough to DO things, but depressed enough that you lack normal inhibitions and your impulse control is nil.  In other words, this is the mental state of the crazed gunman, sitting up in a bell tower, shooting at the pedestrians below.  NOT good at all.

I could see the doctor subconsciously backing up until she was plastered to the wall, watching him with wide eyes.  I didn’t think he was dangerous, but he wouldn’t shut up.  He was essentially bombarding us with words. “It’s called Xanax,” she said.  And wrote him a prescription to cover him over the weekend and then Monday, we’d come back to see our main physician.  We went immediately to the pharmacy and filled the script–and he took one.  It works, I will say that.  It works almost immediately but the effects are temporary–it also leaves the body rather quickly.  One pill was good for about 5-6 hours, and then he’d need to take another one.  On the other hand, his blood pressure on Friday was approaching the stroke level.  On Monday…the lowest it had ever been since he had started seeing the doctor, almost 10 years ago.  So Xanax is a wonderful thing.

We come back and talk to the doctor…who again, is backing up and watching Beloved very carefully.  And he is obviously working up to saying something to us that he’s not sure how it will be taken–he wants Beloved to voluntarily enter a mental health institution.  You know, the loony bin.  I felt so relieved, because I had been trying to figure out how to tell my dearest husband that I was going to take him to the loony bin–even before the doctor said he needed it.  I knew that he was beyond my ability to help and that the help he required was going to require hospitalization. He agreed.  SUCH relief.  Beloved is a SMART man and he also realized that his condition was beyond a few little pills and a couple of days of from work.

He was terrified of being admitted into a psychiatric unit without his consent–but going on his own made the difference and so he would do it.  He asked the doctor when…who replied, “Right now.  Leave here and go.  Your choices are Fairfax or UVA.” and I told him that since they were about the same distance from our home, and the ride to UVA was prettier, we’d go there. And so we did.  The doctors there agreed that he needed hospitalization–but with all the cuts to mental health budgets, their ward had gone from 40 beds to 23 and they didn’t have room for him.  It took all of her 8 hour shift for the social worker to finally find a bed–in Salem, down near Staunton.  A four hour drive for us.  Which worked out because it meant that I would not try to drive down to see him every day.

He stayed for 5 days–which was actually 2 days more than the usual patient.  They were afraid that when he got out, he would go kill his boss (and as the source for all his anguish, a not unreasonable thought).  He willingly attended every group meeting, taking part and actually helping some of his peers with fresh insight into their own issues.  Like any other problem he’s had, he attacked every aspect of it that he could, finding out what he didn’t know and then arranging it into a comprehensive picture in order to understand and deal with this.

We had some pretty major discussions about the fact that his problem IS a chemical one, not a personality flaw or some defect in who he is.  It’s no different than treating a diabetic with insulin and should carry that much stigma (in other words, no stigma at all).  Unfortunately, mental disease/mental health is NOT treated the same as an obvious physical illness or injury.  And doubly unfortunate, his mother believes the stigma and thinks his problem is…well, all in his head.  It is, but not the way she sees it.

Beloved is also fighting the fact that he had years of thinking the psychiatry and mental illness are all bullshit.  Now, faced with the reality of the condition of his mind and the problems that he is having because of the incorrect chemistry, he’s having to revise his opinion and try not to let his mother overwhelm him with her negativity.  He is learning how to explain what’s wrong in terms that really bring home that fact that this IS a physical problem and that he can’t just “think” it away.  He’s also becoming angry at the lack of sufficient and adequate care for those who suffer from mental illness and disease.  It’s a nationwide problem, so even leaving VA to find some place else that has care would not work.

He has had to accept the idea that he began to have this disease when he was a teenager.  Well, teens are moody, and they switch moods fast, so who is going to notice bipolar symptoms?  Most diagnoses are made when the person is in their early 30’s–just like Beloved.  He has been just below the “zero line” for general mood most of his life–that means that he’s sort of depressed without being clinically depressed.  Or to explain it better, he told me that other people came to him to solve their problems, and he never got flustered or upset and he could help them.  I pointed out that he didn’t have the energy to get angry about it, so yes, he was a rock of salvation simply because he lacked the energy (better mood) to be anything else.  Oops.  Yeah, that would be about it.

He’s having to relearn everything, go back over everything that has happened to him and look at it through the filters of proper medication, rather than through bipolar disease.  Like the scene in “Mr. and Mrs. Smith” when they find out each is an assassin and he tells her, “We’re going to have to have every conversation we’ve ever had, again.” Like going through life with bad eyesight, learning about the world completely out of focus and then one day, you get glasses–or lasix–and suddenly, it’s all in focus and looks completely different than you had thought.

It is, simply put, a life changing event.  To be bipolar and not properly treated, to have accommodations and shortcuts that are a direct result of having to deal with a world that’s just not quite in focus….and then to suddenly have it go into focus and have to start over.  Add the stress anxiety and the PTSD to this and no wonder the man has crying jags.  I would, too.  It’s overwhelming all by itself, to deal with all this chemistry, feeling like your brain is not your own.  Now add the worry of money and concern for your spouse who also has health issues…and it’s a major cluster fuck, everything is out of control and you’re a person who likes to have things under control.  Oh dear.

And where does this leave me?  Because that’s really what this blog is about.  It’s not just about my Beloved, it’s about my life with my Beloved.  It’s how he and I live, what we do together and how we fight the battles we are facing.  Bad enough to have to fight fibromyalgia.  Worse yet to have to fight it while learning how to live with someone who has a brain disease that causes erratic behavior.  He also struggles with long term, unresolved anger–which can flare up for no apparent reason.  His disease MUST always be on my mind, constantly figured into any interaction I am going to have with him.  He is amazingly aware of how his mind works and is very adept at explaining the shifting moods and his actions, even if he cannot control what is actually happening.  He can, and does, make every effort to be pleasant and calm, even when he is not feeling that way.  He reassures me that I have not caused the anger or the unhappiness and then we just deal with the feelings.

Our doctor had told Beloved that he has “used up all the ability to handle stress for his lifetime” and we are coming to believe that is so.  As long as there is no stress, no palpable anxiety, no demands on his damaged psyche…he manages fine.  He is not handicapped, not unable to care for himself or to participate in Facebook conversations.  But he is finding that he prefers to NOT go out without me and having to do so makes him nervous and upset.  And then there’s money…the root of all evil and a major source of stress–when you don’t know if you’re going to have any, you get a little wacky.  No one would argue with that–but it is a tiger that has sunk its teeth into his leg and won’t let go.  It’s a boulder, crushing down on his body and he can’t get out from under it.  It is unrelenting and unbearable–and he’s trying to deal with it even as he does all the other things he needs to do to heal the wounds caused by the imbalance in his brain’s chemistry.

He sleeps a lot.  Sleep resets the brain chemistry and forestalls some of the swinging that bipolar causes.  Even on the correct medications, at about the correct dosages, he is still having episodes of mixed state.  He cries easily and then despises himself for “being a baby” even though the tears are washing toxins out of the system.  He needs to cry, there’s so many reasons for sadness that makes tears appropriate, even necessary.  He needs to release that anger as well but finding an appropriate way to safely vent it is harder.

I’m learning how to recognize the bad moods (the mixed state or rapid swinging from manic to depressed and back again).  I remind him to take his medications and I don’t argue when he supplements that by self-medicating with alcohol or tobacco.  I leave him alone when he’s working out anger or just a bad mood (chemicals, remember?) and I am always there when he’s ready to interact with me again.  He used to be a call center agent, on the phone all day long talking to people.  He now has anxiety about even touching the phone, even when it’s his friends that he would like to talk to…so I handle making calls about this insurance or that medication or paying the bills.  He has to take an anti-anxiety pill and prepare himself to actually make the calls that only he can make.  Stupid thing, he can’t deal with the phone–such a common thing, everyone has one, everyone is talking or texting on it all the time…and it makes him unable to function.

This is all so unfair to him, so completely unfair.  He worked hard, he did his best, he excelled at his job and he was viewed as the leader for the team because of that ability.  He is a good man, treats people well, tries to always do the right thing even if it costs him time, money or effort. BUT He’s got this disease, a mental disease, that has stripped him of his dignity by making him unable to do his job and therefore not able to support his wife.  It has made him look like a slacker and lazy good-for-nothing to his parents (mostly his mother) because it’s all in his head.  It doesn’t help that he also thinks that if he just straightens up, puts his shoulders back and forges onward, it will all go away and he’ll be fine again…even though he knows that it won’t.  It’s just the feeling that he can out-think it, can force it into some box in the back of his mind, lock it up and never have to deal with it again.  Did I mention that he has a disease that affects his brain chemistry, which includes feelings?  I think what got him to actually seek help was the realization that he could become that crazy gunman, up in the bell tower…very easily and with almost no effort because of the chemistry in his brain and how that makes him feel.

We’ve both acknowledged that without the other, we would each have sought the ultimate solution to the pain and unyielding stress of life–in other words, suicidal ideation.  We’ve thought and even to a certain extent, planned to commit suicide.  But we will not leave each other, and so we cling together, trying to work our way out of the brambles and onto the path.  A lot of the problems will disappear with the onset of a steady income, at least we hope so.

So I deal with the fibro and I deal with a husband who I call a loony to his face.  As far as we’re concerned, his mental illness is just part of the reality of our life and it has long term effects that he is just now realizing.  He cannot go back to work within the skill set he has gained over the past 20 years.  If he is to have a job, it must not involve phones, or people calling in, or anything that can cause him stress.  That pretty much cuts out any job.  Which is why we’re fighting for the SSDI for both of us.  He needs time to do some healing, to learn how to be “normal”, if there is such a thing and if the medications really do get him to that level–it’s so subjective.

There’s a LOT of stuff that doesn’t get done in the house because I cannot do it and he doesn’t even consider that it needs to be done.  I don’t know how much of that is being male (sorry, men, but you are not known as good housekeepers) and how much is the bipolar disease.  We need to get some of it done because we need to have a house that is cleaner and neater–so he has finally reached the point where he’s willing to get rid of some of the stuff he’s been dragging around behind him for years.  Me, too.  Truthfully, at this point, I’m just about ready to throw it all away without even opening the boxes if I can get my house in order.

So we’re both learning about living with mental illness, the stigma attached to it and the serious lack of proper care at all levels for those who are mentally ill.  Finding the right doctors for him is a real challenge–his psychiatrist was down in Fishersville, a 2 hour drive–in each direction.  Four hours in the car for 10 minutes in this man’s office and in the long run, he was not worth the effort.  Without health insurance, we will have to take what we can get in the free clinic, since as my grandmother would tell you, “beggars can’t be choosers”.  It’s a real lesson in humility–and also in hope, as we figure out what life is like for a bipolar man and a woman with fibromyalgia who love each other regardless.

Namaste.

Brief Rant

Just have to vent this outta the system.  I have discovered that I cannot even make the damned bed.  Well, I made the bed.  Last night.  And today?  I feel like shit and like I’ve been smacked around.  Arms and shoulders are killing me, even after the Vicodin and I just don’t feel good anywhere else.  So I really should not have made the bed.  It involved too much pushing and pulling and lifting and wrestling sheets down over the corner of the mattress.  In other words, the normal stuff you do to make a bed.  Something I’ve been doing since my mother first taught me when I was about 12 or 13.  And writing this has made the tears that were just under the surface come out, so that means if I want a day of relative peace, I need to take another clonipine (anti-anxiety med).  Which I try not to do…

I’m angry at the fibromyalgia.  I’m angry that I cannot do the normal activities of daily living, cannot take care of myself or my house without pain and having to plan it out very carefully.  I am absolutely afraid of being disabled–although my beloved keeps telling me that I’m not disabled, I have a disability.  Well, I don’t want it.  Can I donate it to the thrift store?  Sell it on Craig’s List?  I would do anything to NOT have a disability.  I am afraid of what my life will be with a disability.  I am afraid of what it already is.  If I can’t do the things I need to, if I can’t do the things I want to…where is the reason for living?  And yes, I have what is euphemistically referred to as “suicidal ideation” in the psychiatry world.  But I don’t have a plan, because I don’t plan on leaving my husband in any way, shape or form.  So I am having to reconcile the idea that life is going to be very limited with the acknowledgement that I am going to live that life for as long as I’m supposed to.

I think it sort of comes down to this disability removes choices.  I don’t care about skydiving, race car driving, learning how to play the tuba.  These were not things I ever wanted to do.  But to realize that there are going to be a lot of things I would have chosen to do that are no longer possible…pisses me off.  I am stubborn, from a long line of very stubborn people.  (One of my great(great) grandfathers, at the age of about 80, was being teased by his friends about picking up an anchor (that he had picked up when he was younger)…so he went to try and pick it up.  He couldn’t, and he got so mad, and tried so hard, he had a stroke.  And died.  THAT’s stubborn!)  Don’t tell me I can’t do something, because that’s just exactly the right way to get me to do it.  Oops, probably shouldn’t have let that secret out…

I want my choices back.  I want to stop hurting.  I want to be ME again, not this “me with a disability” that I am.  And will be.  I want to be able to make a bed, do my dishes, take care of the laundry…I want to be able to work.  Yes, I’d like to have a job.  But there’s no way I can do anything that resembles “bringing home a paycheck” with the way my body actually is.  (And we’re going for that permanent disability thing, remember?)  I don’t want to spend the rest of my life having to count pennies because truthfully, a disability check may cover the necessities (I hope) but there’s no overtime available, no bonuses…so the casual buying of fripperies is out of the question.  Not that I need fripperies, but a new computer once in a while…is going to have to be carefully planned for.

I have spent the last 10-12 years of my life living very frugally (on a paycheck that was half of what was considered a “necessary” income for the area I live in) so I know about thrift stores, buying on sale, and so on.  Apparently this was an education to prepare me for living with a disability and on a fixed income.  I didn’t ask for that diploma either.  I am so angry I want to scream–except that it would scare my husband, who is still sleeping.  So I think I’m screaming in my head…and I really hate the sound.

So I’ll stop here to keep the title truthful…a brief rant…it’s a bad day, don’t take this too seriously, it will pass because it always does.  I think we will go swimming today for sure.

Keep on swimming, keep on swimming, swimming, swimming…..

 

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!