Flavor rant...keep your chemicals...

Some goddesses are puzzled by this...like me...
I remember hearing about a post on a blog or a story on the TV news or in the press when Starbucks made the decision to use Strawberries to color their cold drinks instead of red dye no. 40 or whatever.  It is that dye that is in everything you seem to buy with the least tint of red in it. And I thought it was ridiculous it was even a story. Starbucks should have always been doing this.

It must have been a slow news day. Somebody's cat up a tree and miraculously finding its way down on its own was a better story. But the press gave lots of time and room to...this.

     But hey, it's not as if you CAN buy natural food, made the way it should be grown. In the best way for the plant and for the human consuming it unless you make a special point of buying organic and have everything specially handled. It's amazing to me that you pay a premium to have nasty shit kept OUT of your food. Gee, I don't want you to put anything I can't spell or pronounce into my food, and Oh, here I need to pay 200% more for you to do it?! It has NEVER made sense to me. But then our food supplies wouldn't survive a nuclear holocaust and my Mother's pantry wouldn't have had food in it that was 2 or 3 years past its expiration date. Someday the cockroaches will love us, after they learn how to chew through the tin cans.

I know I'd be much happier in my life if the chemical garbage that polluted my food hadn't polluted my body as well. my theory is that those chemicals don't all leave as waste products, because that would be too clean...and just wouldn't really fit in with the chemistry in our innards. Think about the fake cheese popcorn chemical coating. If you haven't heard the story, it's why I won't eat the stuff anymore. I got an excessive craving for it the day after I brought my newborn son home from the hospital 20 some years ago as I and his father were headed to a family Thanksgiving celebration. Two days later I discovered why this wasn't a good idea. It was just wrong. What came out of the baby. I was breastfeeding. Smelled and had the SAME COLOR as the cheese popcorn coating. It was truly disgusting. This set of chemicals had gone through TWO digestive tracks and stayed together. Wow. But that to me is more reassuring than the stuff in our food that DOESN'T.

That's the stuff I worry about and wonder what it's doing in my body. What cells is that garbage changing? What inadvertent effects is it having on my brain or central nervous system chemistry? How long is it being stored in my fat or muscle tissue? In my liver? Is it all being released in a flood when I diet? With some of the effects I've noticed just watching as people slimmed down, and the difference in a few generations between what was considered a "healthy" diet and what wasn't, I'm pretty sure that no matter the number of vegetables you eat nowadays and good grains, if they aren't fresh, non-GMO, and organic, your diet is probably worse than your great grandmother's...and she probably went to bed hungry a whole lot more often then you do.
from a pissed off goddess with poison in her food supply...

Clusters and others and the menopausal migraineur meets the puzzled goddess

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

Fugue state is an old term for that time in the migraine cycle that you are hyper aware that a migraine will happen, expect it, dread it if you want the truth, but can't look away any more than you can at a train wreck.

Well....that's if you're a migraineur who gets "classic" migraine as I used to. Before 30 and pregnancy, estrogen, progesterone, and now testosterone all have influenced various conditions and turned classic to cluster. (I've been wondering tongue in cheek for the last twenty two years if this wasn't just a cluster f@ck of a diagnosis on people's lives. And knew it was my black humor and early bent toward the military coming through.)


I've been doing a great deal more research myself lately since large studies are finally being done, and I'm becoming involved in chronic pain advocacy, because, this is my life. There isn't any changing it now. My new normal has been here and holding out dreams for magic pills is just getting in the way. So all health topics will pretty much be moving to my new blog The Menopausal Migraineur .

And yes, I do look like a vampire in the middle of a bad attack. LOL just HAD to prove it. This is even after a sunburn and hives.

from the puzzled goddess going to do her relaxation exercises. . .

Pain full thoughts...

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

I've had low blood sugar, migraines, colitus, acid reflux, back problems, and high blood pressure since my mid teens. Fibro in my late teens. Chronic fatigue, hyperthyroid, thoracic outlet, and carpal tunnel in both hands in my late twenties. I got pregnant and my migraines went to clusters and then daily clusters. Then they gave me drugs that made me obese. I developed high cholesterol, hypothyroid, high spinal pressure. Now finally diabetes, Hashimoto's thyroiditis, and uveitus.

Now by the luck of the draw the pain isn't upping my blood pressure, it's lowering it.  Which I didn'..t know could happen. So now if I bend over at the wrong time or move too fast I pass out. Orthostatic Hypotention...? WTF?  Sounds fun, huh? Wee.... yes, that's sarcastic. One more weird ass thing to explain to people that doesn't kill me,  or put me in more blinding pain than I've been for the past 17 years, but one more time my body triumphs over my mind.


I watch others who I know are in so much pain, and I try not to make it a contest about pain. Just getting through each day is a miracle, so how can pain become a contest? But when you so constantly feel like you have failed at all life has thrown at you, it's hard not to see it as one more in a long string of things you've failed at...pain tolerance....you just don't measure up there either....no wonder you just can't take any more...

Knowing that I'm going back to biting, grinding, soul numbing pain that never ends, of the sort that if you were an animal and could bite a limb off to it stop you would and that there is no medicine or trick or activity or meditation or THING that I can do or NOT DO in my life to stop it from coming back to me scares the hell out of me. The medication is not as effective as it was...soon it won't be effective at all...again

The pain doctor, and the psychologist she sent me to, think I'm giving up, and that I have a negative outlook. I don't think that's the case, or I would have swallowed a gun long ago. I just don't think either one of them intimately knows pain. Most of the people who try to regulate it I don't think have ever known or lived with much real pain in their lives or they wouldn't really give a rat's ass about the small percentage of people who abuse medication and would have more compassion for those who have to live in the pain. If crawling into a bottle or a bottle of pills would give me back some of my cognitive function or reasoning powers around the pain, I'd do it in a heartbeat. Hell, I'd do it if only to get a teensy break from unrelenting agony occasionally.

But I'm not dying and so I have to live on in unrelenting agony because my government wants to be my mommy and knows what's best for my body...even better than my doctors...and they've known so well what is best so far....

yeah...from the sometimes goddess of sarcasm and pain

don't take my energy...

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

I am, as those overly PC people put it, "differently-abled." I've railed against it, against my genetics, against gods, and all involved.

Most people don't get it because it's invisible. Over the years I've commiserated with others in similar situations because they too, understand...that's why I'm frustrated and get pissed off when they blithely steal my family's spoons. Yes, I consider it a theft. Because otherwise I was in an untenable situation and would look bad...

So it was that I use energy I and my family didn't have to waste on somebody that KNOWS how little we have because they are in the same boat, or look like awful shirkers who leave these poor people stranded alone to pack up all by themselves.

It is worse because my husband has now joined the ranks of the uncontrolled diabetics again (no insurance), with other problems that go with it like high cholesterol and high blood pressure and his sleep apnea. He's losing weight. But somewhere recently he lost his backpack that had his diabetic blood sugar monitor in it, and half of his medicines and of course we can't afford to replace it without insurance. A doctor visit alone to our doctor is well over $200, but it's getting critical.

So I've been rationing his energy, like I ration mine, like I ration that of the rest of my family...others think of it as how many spoons they have to get through a day. It's a good analogy to get the point across. Your energy is finite and people who have an energy reserve don't get that...but people who are disabled themselves SHOULD!


I've had to tailor my family's life to our reality. It used to be what do you want mommy to do, this school thing with you, or a movie with the family over the weekend? A family night? or some one on one time? It was always mommy and always an either/or. Now it's daddy as well, or both.


I ration my energy day to day. I ration my husband's energy. I ration my family's energy.


I even explain to people that we make choices between what we can do and what we can't based on the disabilities and amount of energy it takes to deal with it.


With small children and disabilities we found we couldn't event. We especially couldn't autocrat as we loved to do. I stopped going to most events and my husband went alone to some of them. I stopped cooking at events. We stopped putting up an elaborate period camp. All of our activities got rationed. Saying "no" became a hated skill I had to learn for my sanity and my family's ultimate survival.

We went to few events, even fewer activities because my disabilities made daily life a chore and just living it to raise children took all my energy.

Now my children are old enough to be a help. We are learning how to streamline our SCA lives to sometimes be able to still be able to afford the energy it takes to go to and sometimes even to run events, but I need my entire family's energy to do it for us all to get there and we plan our vacations from the everyday grind of pain and "can't do thats" accordingly. We all pitch in to make it work for our family.


Now, there is a down side that I have found with our love of our new group. My husband hasn't learned the ability to say no, and I find myself feeling responsible for people who are availing themselves of our too finite family energy reserves so that we are left with less than nothing when we return home. It will really mean fewer events for us, that's the bottom line.

I can't allow my husband, who is our only almost able-bodied bread winner at this point, to cripple himself like this for multiple days on our return from what is supposed to be a "fun" event. As a family, we can't afford it. Individually, he can't afford it, health-wise.


I can't afford it, selfishly, when he is my only support for transport, and the only support for transport for his disabled mother as well.

Don't get me wrong. We had so much fun with our friends at this last event, but we knew our limitations, and the limitations of our conditions and didn't even do our normal volunteering. My husband didn't fight; crap, he didn't even marshal. That should have clued people in to just how messed up he was. He went to bed just after dark on Sunday. This, from the man who like the night owl he is, normally helps me greet my pain filled dawn.

He's only like this when his diabetes is messed up like it was this last weekend and the injuries are stacking up from the weather and the packing. I doubled my meds. I'm not supposed to, but I can't pack otherwise, and I was relieved it only took us about 4 hours to pack our own stuff up. We woke up and immediately got to it like we normally do, all of our family pitching in and doing what we can. We even ate as we packed and just got it done. I was thankful to the bit of help we got to fold up the one tent and tote the couple of heavy things I can't lift. It was all of about 10 minutes to help us finish up or so I would guess. I probably made it longer trying to get in the way and bend over myself, but for some reason people kept being concerned I'd faint on them or some stupid sh*t like that. ;D (Thanks Aislin for the assist folding the tent!)

I had to think long and hard why I've been so upset the last few days while we've been recovering and pretty much bed bound. And I think it was so hard because the next 2 hours was spent packing up a camp with only half the people who had shared it helping after they had made an INCREDIBLY slow start to their day and it had put them way behind everybody else. I found it hard to not feel resentment as the kids all sat in the car and Mom in that camp did most of the work, disabled as she is.

It bothered me most because, while I don't mind helping, I expect EVERYONE to do what little bit they can if I am going to be using up energy my family doesn't have to spare, and I felt like my husband and I and a few others were paying the toll so that the disabled gentleman in that camp could overuse his own energy and enjoy himself that weekend. We paid HIS price. My husband even warned him not to pack so much and was ignored and we still paid his price. As well as the price for the non-disabled people riding with him who could have been helping but sat in the car instead for various reasons. They may have been valid reasons beyond getting food; I don't know. I just know that energy was fading fast that would have been conserved if there had been more help and more fellow feeling.

Courtesy requires that people not be able to say things when they are so angry they are being abused and they feel they are being taken advantage of. That is wrong. It is discourteous to us all to take advantage of us by relying on our courtesy and goodwill to do your work.

A two hour drive home took 5 hours because of the stops we had to make to calm the spasms of pain my husband was having ,and I was in no shape to drive because I'd had to double my meds to "help" pack up when I went beyond my limits. I felt absolutely helpless. I didn't have anything I could medicate him with and I was too medicated to drive. All we could do was wait for the muscle spasms in the back and shoulder to lessen enough for him to drive again.

Then he had to race the clock to get home to help a disabled mother try to get a battery for her car working so she could see a doctor. He ended up back out on the road, muscle spasms and all.

So...I need to get this said. I may be seen as the wicked witch of the west or of the local area. But, I did my volunteering in the background and what was within my energy to do at the event, or would have been, based on what my family packed and what we knew we had to do.

I've had 2 eye surgeries in the last 4 months and have been fighting medication changes that are swinging my blood pressure and blood sugar up and down, and I'm lucky if I can bend over without fainting. I make us pack only what we need. My husband didn't volunteer to do the things he loved because he hurt himself helping people a few days before the event and knew that packing up and slogging in the mud would be too much for our family energy to absorb.

As adults we make those decisions daily, and yes, we made the decision to help the pople we did, because their being left behind to do it on their own would have reflected badly on our own group and ultimately, on us. So we made the choice not to look like slackers who had no conscience.

But they, as well, are adults, who have been disabled a long time. Long enough that they should know their energy limits and not ask others to give them spoons. Aislin doesn't have many spoons to spare. I don't have them and my husband doesn't have them to give. We were put in a position to be made to look bad if we didn't and that's what made me upset.


Many people in our group are disabled. We seem to have an overabundance of "differently-abled" who need to steward their energy wisely and, as such, we need to help each other as a community, but we need to NOT count on abusing that help. Because those of us that help are giving up our energy and spoons and future days of being able to take moms to hospitals and go with kids to events at their schools to you too! These are things that have been missed...


I recognize it when I have to ask for help, and I sure don't expect to receive it. I am amazed and humbled by the willingness of our members who can give of their help and do, but expecting the help is an abuse that will see the help drying up and blowing away for everyone.

Why am I cowardly bitching here instead of in an open forum where I can be answered face-to-face, or in a one-on-one meeting where I can address the problem diplomatically with the major individuals involved?

Mainly because of my old nemesis, disability. I can't string sentences together and when I have an issue to address when I am upset the ability regresses even further. My IQ drops by 20 to 50 points and I spend many minutes fighting the fog and being frustrated and losing the point of the whole exercise, and by then, so has the person I'm trying to confront. So I have found that writing, with the ability to stretch it out, find the right word, and ask for the person's feedback, can actually facilitate one-on-one communication for me. It is still just as hard for me to confront someone as it ever has been. I still need to get my courage up so I'm not walked over and then I need to find the words so that I can hope they'll understand my feelings, and not just blow it off as unimportant. Because if I sat down and took the time to draft it out and write, it was majorly important to the future of that relationship.

from the goddess who has been hibernating with her god for 2 days recovering...

The Spoon Theory written by Christine Miserandino

For those who don't quite 'get it' when I talk about managing my energy during a day, or only having so much or being out of it....or what it's like to live disabled. This is the best analogy I have EVER read.


The Spoon Theory written by Christine Miserandino

Posted using ShareThis

Eye strain...and growing tolerant to modern meds

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

I'm getting tired of posting these updates...and I'm sure others are tired of reading them. But it beats having to tell you all ad nauseum in person all the health woes of the woefully insane who has Hashimoto's (Fibromyalgia, chronic migraines, diabetes, arthritis, and, and,....bleck).

For those who haven't looked it up yet, Hashimoto's Thyroiditis is another cute imune system disorder that doctors can't really treat. It normally starts with attacking your thyroid, thus the name, but when it's under control in the thyroid arena, it can chose other organs of your body to attack, just like lupus and sarcoidosis are known to do.

Some of the people that I know that have it, are theorizing that mine chose my left eye to attack.

It's as good a theory as any other, since this is exactly the theory the doctors came up with...they were just trying to assign sarcoidosis to it...it seems that the doctors at Casey Eye haven't met Hashimoto's yet. Doctor Dreamy meet Hashimoto's Thryroiditis, Hashimoto's meet Dr. Dreamy. otherwise known as an escapee from the cast of "Grey's Anatomy." (I swear to God it is true! LOL.) I think the doctors up on the hill need to pass a casting call as well as an IQ test and medical school in order to work there. Hmmm! I wonder how that's included in the job anouncement?

But, back to the serious stuff of updates...the vision is at a blurry 20/60 now with my corrective lenses and isn't going to get much better. I can see to do close work illumination and such without my glasses much better than with them. It seems pretty solid that I will end up having the laser outpatient surgery to correct the rest of the blurry vision. I still have a seriously weak eyelid on that side and the eye muscles get VERY sore very quickly with use, but I am trying to push them in order to get the peripheral vision back.

Other than the eye, the meds for the cluster migraines have pretty well stopped working on a daily basis so I am back to most days being at a 8 or 9 on a pain scale. It will probably take me a while to adjust again to that level of pain and the associated lack of conscentration and cognitive function it allows me. I'm trying to avoid the snappiness and grouchies that I know go with the chronic pain in the head.

Been there, done that, I own a closet and dresser full of those tee shirts. It just gets tiring not to be able to think or form a sentence and to have the people around you talk over you and complete everything you say.

One bright spot on this~! with the migraines back I can't really feel the arthritis in my back and the joint degeneration in my neck. LOL

So unless we go 4 wheeling in the woods, or I'm sleeping too long my head is out screaming my spine. The silver lining to every cloud. I still need the meds to get around when my head drops below a 7 or so...cuz the back pain is above that...gee, doesn't THAT make me a fun date at Christmas? LOL And to think my daughter is cringing because she's looking into a possible future...

Love and kisses and blessing to you all from the poster child and goddess of
it doesn't kill you it just makes you wish you were dead

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

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

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