27 June, 2009

Levelling the energy

Some goddesses are puzzled by this...like me...

This is pretty stream of conciousness. It's the morphine and the temperature of 102....it tends to make me free associate weird thoughts...

People talk about energy levels all the time as if they understand them. As if energy would miraculously appear out of thin air and pump them up and they could go on and do more and be more. The say things like, "I'm getting my second wind." Or, "I hit a wall." I drink in the chi of the universe. Feel the energy flow....

Most of the energy flow I feel is right out of my body...and of course it bites me in the ass on the way out.

I remember my disability insurance company trying to send a private investigator to investigate my claim quite a few years ago. It was soon after my dad died. Karmic timing as usual.

It was laughable in retrospect. At the time, I found it far from funny that this physically active 20 something single guy who had never had kids, a college education, tried to be supermom, been a computer professional, or been any kind of professional for that matter since he couldn't even keep a scheduled appointment, was the one that was putting the hammer of judgement down on my life.

He looked around at an overweight mom, who barely had insurance to pay for her medication to keep her disability under control and her meds that would keep her alive, that couldn't do much housework and had 2 children under the age of 7 in an apartment 1/3 the size of the house they had lost in the bankruptcy the disability had forced them through. The apartment might as well have been used to shoot a scene from "Cops" in it. A husband that was fighting his own disability issues, but working full time.

The investigator met with me once or twice and cancelled one appointment. Then told the insurance company I wasn't cooperative and obviously wasn't disabled because I wouldn't meet him on 2 hours notice when he rescheduled an appointment in a town 10 miles away and I couldn't drive. But I was a flake in his mind because I had broken teeth and couldn't afford dental insurance and spoke of only having so much energy in a day to get me through.

When you look ill, or run a temperature, people expect you to go lie down. When you look....say it with me....JUST FINE! People make all sorts of judgements. They'll expect you to remain self-sufficient and when you aren't, they'll ask what they can do to help, but God forbid you actually have worked out an answer or call on them for help. That's when the excuses come out.

I guess I've been lucky? I can count the times my immune system has been healthy enough for me to run a temperature in the last ten years on my fingers. You'd think, because it's so rare, that I would immediately lie down and try to get better. Wrong! If I'm running a temperature I'm actually probably in BETTER shape than I am normally, at least my immune system is fighting.

I was running a temperature of 102-105 degrees the 10 days we had to move out of our home while it was being foreclosed. I didn't have the luxury of checking into the hospital. Luckily, my sister and niece helped my husband and I a bit and my parents watched our kids a bit or we would have lost everything else we owned. No one else could help. I still remember how dark that time was. I was very bitter about it for a long time. I felt like I had failed my family, lost our home, and lost all our friends all at once. I collapsed into bed in the den of my parent's home for about 3 months after we loaded up and moved all our stuff and got through the bankruptcy hearings. I don't remember much from that time but physical and emotional pain.

I'm only dwelling on this now I think because I'm trying to put things behind me and move on with my life. The bitterness is doing me no good. With the new meds, I'm out of the pain haze enough that I'm thinking again so I'm remembering more than just the day to day which makes me sad for all the people that I thought I knew. Because I'm dealing with the pain clinic again, I'm required to go into therapy, again, even though the therapist doesn't seem to think he has much to teach me. I'm sure there is...I've had 47 years to screw up this psyche...there's got to be something in there for him to fix! He's another one that I want to introduce this book to tho'. He seemed so absolutely floored that I could speak coherently and string two sentences together. And if I'm what he thought of as being a very cognizant and highly intelligent patient who had all my faculties....I'd hate to see what he deals with the rest of the time.

There are so many holes...so many holes were the pain has eaten through my brain and the cobwebs just can't spin to close them fast enough.

I'm running temperatures again, which means my immune system is the healthiest it's been in a year or two. Viva narcotics! I had so adapted to living with the pain and the lack of energy that I had forgotten why I wanted to live a life.

I have good days and bad days. The bad days had way started to outnumber the good and when I was delegating most of my living...I didn't really feel like I was living... I don't wait to recover anymore, I guess that's the biggest lesson I've learned. It's the lesson my husband hates the worst. He considers it giving in. I consider it adapting to the new situation and moving on.

It's time to adapt to the new pain level and move on. Luckily, the current level of narcotics allows me a breather for awhile to do that....3 months ago I didn't feel optomistic enough to have that option.

Now it's off to see what my fever induced dreams want to tell me....
from the goddess of night sweats or day mares

22 June, 2009

It's all in your head.... Really!

Some goddesses are puzzled by this...like me...

Just Fine....

"Since family or friends cannot see the illness, how can it exist? And how can someone believe that the illness is real if everyone around them doubts or scrutinizes it?"

Same book, different quote. I lived this quote for so long. With every migraine, every paralyzing muscle ache I couldn't explain, until even I wondered if I was causing myself to feel the pain and started to blame myself for putting myself through this rats' maze of doctors, doubts, and debillitating illness. I thought I must be mentally ill or I wouldn't want to be sick like this, right?

I remember the same kinds of reactions when I was a kid and finally got diagnosed with a "nervous stomach." Now I just live on immodium, preperation-H, and peppermint tea. Then, I always assumed I was at fault, hmmm, I guess I kinda do now too, lol...guess I haven't grown up as much as I'd hoped, huh?

[if you have a little know illness or condition, and if the symptoms are not visibly apparent, the reactions you receive can change dramatically. "Those with hidden illnesses are often treated with disbelief and thought to be hypochondriacs, whiners, malingerers, or difficult patients," says Higgins. {Bejai Higgins} They can sometimes receive dismissive medical treatment. These discounting reactions from health professionals, and sometimes the patient's family and friends, can begin to generate self-doubt. Self-doubt, left unchecked, can lead to depression and isolation.]

Hmmm, that self doubt thing always sucks. I always have to wonder, do I REALLY want to spend the majority of my life in pain and struggling just to get out of bed?

.....HELL NO! Days like the last few are a good way to answer that!

I finally have a bit of pain relief with going back to one of the old anti-seizure meds I was on years ago that I became accustomed to (so it stopped working) and they added some slow release narcotics to the mix. While I prefer to be in control of the narcotic release so that I can use them only when I really need them, I have to say that I'm getting more done today housework-wize than I have done in months. But I have to constantly counsel myself to be careful, not to overdo just because the pain is in the background.

A good day does not mean a cure...all these litanies have now become part of my internal mantra, because otherwise I try to fight all those doubters and all those judging eyes and push myself WAY past what I should do and pay for it for weeks to come.

For years I listened to the people, and my own head that said, "if I think healthy, then I'll be healthy. If I don't think about my depression, it will go away." This may work to some extent to help me summon energy, and it's helping me do chiqong to try to get the nerve impulses rerouted around my damaged disks in my neck, but I also need to deal with the reality.

The years I've spent fighting this have actually made this so much worse and made my illness so much harder to deal with.

If the energy I'd put into pretending I wasn't in pain or was well had been put into healing or increasing my energy like I did very early on, before I stopped trusting myself, I might have come to an accomodation with this and been able to balance my energies instead of spiralling into depression and starting to believe the sarcastic and mean things that people whisper.

For some reason, the more things that you have wrong with your body, the less sick you are thought to be...somehow that's a medical community correlary. It holds true in the real world too. Maybe it's just that people expect lies to be complicated and so if you're really sick and it's complicated they think you must be lying? I don't know....just trying to think of some excuse for the crappy subliminal attitudes over the years. ;D

I've gotten to where I don't want to say much of anything to anyone because they'll have that long suffering look that says, "here she goes again, another laundry list of symptoms. What is it NOW?"

[They feel that the illness is their fault, and this is often a belief that is confirmed by others. Even their doctors can sometimes not locate a reason for their pain or discomfort or the array of symptoms they are experiencing. And sadly, sometimes their spouses do not and cannot understand the illness.]

The blame game and being at fault, oh boy do I understand that one! Wow, how many times have I offered to give my husband a divorce? Not because I hate him and our kids, far from it, because without having to deal with all the issues of my disability and medical problems their lives would be much smoother. Luckily, Rick is more understanding than I probably would be in his position, though I hope I would be better than some I've met. (Maybe I'm paying back Karma for being a judgemental bitch in another lifetime? hmmm?)

So often it comes down to a choice, would you rather mom did this, or that. Went to this game, or was with the family for a weekend. Medicated herself to attend your school concert, or had a family picnic with you? Did the laundry, or made a family dinner?

I and Rick have worked it out to a fairly good degree. And we are pretty well aware of the realities of living with this thing called disability that tries to suck so much life from our family. I am lucky in that we both believed in the vows we took. We're still waiting for the "in health" part to come around....

The kids have learned responsibility, but I don't think it's necessarily a bad thing. They have compassion. They have also learned impatience for having this alien THING that takes over part of their family whether they want to allow it or not. But the kids actually get more quality talk time with me than I ever did with my parents. This may not be a good thing according to them. ;D They actually have told me that they appreciate me keeping an accomplishments/pain level chart up on the fridge because it gives them some idea of what I'm dealing with and they don't have to be detectives to figure it out.

In 1996, with a toddler and a newborn, with Rick being a house husband, having a doctor refuse to sign a return to work order for me was the worst wake up call I have ever gotten. It destroyed my sense of self worth. We lost our home, went bankrupt. I lost my career, my livelihood, my friends, my social life. Hell, I even lost the ability to balance a checkbook! (I still struggle with that monthly. No wonder they didn't want me managing multi-million dollar projects....hehehee!)

So much of my sense of self-worth was tied up in my career, and now I can't even solve simple problems in life without anxiety attacks. If I push to do more than 2 or 3 hours of ANY activity per day, I have to recover for multiple days....those are the ones other people don't see.

Yet there are still many people who are convinced that I can just, "get up off my fat, lazy ass and get a job and support my family, and I would be just fine." Yes, that's a direct quote. It was only said to my face once, but God, I've seen it in so many eyes over the years, heard it in so many questioning voices, in so many insincere offers of help....

The person who said that to me is reaping what they sewed. I personally am hoping that all of those that have had those kind of non-compassionate thoughts about a situation they really know nothing about don't ever have to live in this kind of agony to learn their mistake. I can't even wish this on them.

Our family time and leisure time has been totally hamstrung to cater to what mom has energy to do. I have to be careful and remember to not overdo things when I'm medicated because I'll pay for it with the exhaustion when I come down.

It's taken me years and I'm still only now overcoming the guilt that it was my body that failed my family this way and that I'm the one that has to be constantly accomodated.

Can we please go back to it being all in my head?

from the puzzled goddess of painful truth

21 June, 2009

Just fine.....

Some goddesses are puzzled by this...like me...

That which doesn't kill us?

I picked up a new book a few weeks ago. I normally refuse to read books about illnesses, etc. and the latest, 'new cure.' Been there, done that, and have way too many versions of that t-shirt.

I keep up with research in the diseases that I know are eating away at my immune system and other parts of my body and follow various newsletters over the internet. I gave up on books awhile ago, as the information lag behind the treatments I was already receiving was just too great.

But this one is a bit different. And I've been approaching things a bit differently lately. It always seems like I have to once more let myself cycle down through the very depths of feeling like absolute crap and being in an amount of pain that is uncontrollable at an intolerable level before either: a.) I get up the gumption to tell the doctors that they better do something about it and we need to try something new, or b.) they notice that I'm particularly suicidal and decide we better do something different and try something new.

Why I'm in a different head space this time I think? is that the number of weird conditions that Western medicine doesn't really like to explain that are effecting my health are now being added to with all those sucky conditions of old age that Western medicine recognizes and seems willing to treat. The doctors keep shaking their heads and adding a new weird diagnoses for every 'normal' condition they add though. I'm up to 10 or 12 now that I'm fighting and trying to balance.

I pretty much try and only worry about the immune system ones that are actively trying to attack my organs and eyes and glands. And the ones that will actively kill me or really make my life go through major suckage by making things be amputated or worse if I don't keep them under control. You've got to have some priorities, right?

We have three or four names for the immune system crap. Chronic Immune Dysfunction Syndrome, Fibromyalgia, Myofacial Pain Syndrome, Hashimoto's thyroiditis....any others? Something else will probably jump on the band wagon. It's not like they have any great tests for these. They go on symptoms. So they theorize that my immune system decided sometime in my late teens or early 20's that it didn't like my body. Western medicine still lacks tests for most of these to find them before they start harming the body, and even after they do, they can only treat the symptoms.

Huh, makes me sound like I fit in with every other person in this book. The subtitle? "Unmasking concealed chronic illness and pain." Not that the pain is all that concealed...not from ME anyway! and based on how bitchy the family says I can get when I'm not making the effort to be nice...

Well, golly gee, Mr. Wizard! Organs being attacked and stopping working gets painful sometimes and when you don't have much of a metabolism because your thyroid barely works...and what does work seems to be under attack it's kinda hard for your body to function with what the diabetes leaves you....hmmmmm....I guess I just got no excuse. One of my new doctors didn't even look up what Hashimoto's was and what it had been doing to my endocrine system/digestive system before she decided that I make poor nutrition choices and have an improper diet.

Actually, I eat keep track of my diet better than most skinny people or dieting people I know. I eat 1000 calories less a day than I should to maintain my weight most days (to a diabetic a carb is a carb is a carb nowadays and I eat WAY more veggies than I EVER did before!) Yes, even on those awful days at Izzy's when I punk down the HUGE amounts of carbs because they don't have much on their menu but deserts that isn't loaded with preservatives and chemicals (and even those are borderline....yeah, yeah, you all know the rant...) I STILL manage on those days to come in under 12-14 carb units which is at the upper end of the scale of the diabetic diet I've been following, pretty religiously for, oh, about, 6 years. It's not like it's hard. At my size, I'm allowed quite a bit of variety to maintain my body weight and the big change lately has been the huge increase in fiber and veggies for me to balance all the weird things the meds are doing to my system.

But my Hashimoto's thinks I'm starving anyway.(this thyroid crap started back in about 1990 for my body, yippy yay!), but my diabetes thinks I'm not." And anyone who knows me, or has seen me eat knows I'm not starving ;D You'd be surprised that the meal I'm eating may be the only real meal of the day, but I do eat right.

....and the judgements? from other people? keep going on, and on. This woman was a doctor. What chance to I have against the judgmentalism of other people? I've gotten so tired of the lectures from the people who have all the answers because their brother's cousin's wife's aunt, or their family, or they... compassion is lacking in these people in that they even think to judge or lecture. This book is for people like them. And for me, to help me remember to take a deep breath and walk away. They aren't worth it anymore. My energy is too scarce. People who are going to judge me on whatever criteria they've made up in their head, for whatever reason, whoever they are, I can skip knowing.

Maybe if more families or friends or doctors read it, they would remember compassion when they were dealing with other people and stop judging. Maybe more relationships could be saved.

Recently I finally put my foot down and told the doctors I need better pain management. Yes, I look "just fine." I look like some healthy, middle-aged matron who has over-indulged all her life and is now paying for it.

Goddess, don't I wish. I see that judgement in the eyes of even my friends and I want to tell them to walk even a few hours in my shoes, let alone a few years in unrelenting pain that is blinding and doesn't allow thought. To add in my thyroid system that has been shutting down for years and struggling to have to place one foot in front of the other or bend over to pick up a paper dropped on the floor. I still do those things. It just takes a lot more time and a lot more effort and many more days.

I am digesting this book slowly, because it is written about people like me. People who don't want pity. People who are just tired of being judged. If I had a nickel for every offer of help I'd gotten from those same friends and family that then had some excuse for not being able to be there for me when I really needed it, I would have been able to pay for the specialist my neurologist wanted me to see in San Fransisco! lol

I can remember so well always running here and there to do this or that for this person or that and never having time to catch up on anything for myself...I still don't, but now I don't have any energy for anything for myself either, so it balances, sorta. ;|

There's a quote here on page 31 that resounded with me:
[ 'It is very frustrating when you are raised to be active, and you have talent, but you are no longer able to do the things that you enjoy.'
People with chronic illness or pain are survivors, and accepting limitations is in conflict with the code that survivors live by. No one wants to be sick. No one chooses to give up those things in life that bring joy. Yet at some point, people with chronic disorders need to learn to say no to many things that have always been part of their lives. Being told to look on the bright side by well-meaning friends and family members simply adds insult to injury. Positive platitudes and quick fix suggestions trivialize pain and symptoms and cheapen the impact of these difficult and relentless challenges.
Chronic pain is real yet it becomes difficult to talk to friends and family about it. Not only do people want to be free of chronic pain, they do not want to feel like a burden. "It's a large part of who I am. I just don't want to be pitied by my friends or to be known as 'the suffering one' to those I love or the people I work with,"...." Everyone becomes tired of hearing about how much I hurt, incuding myself! Some people think I am making it up or exaggerating my symptoms. But chronic pain is very real. Even the medical community doesn't always take my pain seriously." ]

I could so relate to this. I just don't want to talk about my health all the time. That's why this blog is about other subjects: my kids, tea, fashion, the sca, films, weird stuff, things that strike me as funny. Quotes from books I'm reading.

This book just happened to hit a particularly strong cord, and it probably doesn't help that they are changing my meds, and I'm feeling mental and whiny. It's father's day and these days, when I miss my parents I always realize how young they were when they died. I look at I and my siblings, my cousins and realize how young we all are for the kind of things we're already facing. I never expected to be under 50 and sharing the "old lady" symptom and medicine comparing conversations over the phone, you know?

Today I have to realize that my dad and my husband are probably the two people who have come the closest to understanding what I live with on a daily basis. I thought my dad was overprotective.....I think my husband is most of the time as well.

So, what does that say for my sense of judgement?

Probably means I picked the best possible father in the world, who I miss a whole lot today, and that I couldn't have married a better man, huh?

from a puzzled goddess who looks just fine thank you