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!

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The Path of Our Life…Has Some Potholes

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

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

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

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

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

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

 

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

IMG_20140529_160331

 

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

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

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

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

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

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

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

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

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

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

Peace and blessings,
Namaste!