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what now…

well detoxing off meds is no longer a huge issue for me. i did go back on a small dose of neurontin and wellbutrin. i just wasn’t doing well. my fibro is probably about as managed as it will ever get. basically i have to maintain the self-discipline to do good and healthy things for myself. but there is one thing i continue to struggle with. when i strip away the alcoholism (sober 2 years sept. 27, 08), high doses of psych meds and chronic illness/pain…i’m still left with me.

i have begun yoga teacher training. i really want to bring home the whole practice of yoga and what it encompasses. yoga is not just a physical activity that keeps us strong and flexible. it is largely spiritual and a whole lifestyle backs it. but i won’t try to explain or go into that.

i’m struggling with a huge underlying pain that i just can’t resolve or come to terms with. it’s not a simple pain…there are several arms to it. if i could apply the principles of AA or yoga or others i’ve learned over the years…this pain would boil down to “simple” with simple solutions. but i have a hard time applying principles if i don’t have them in my heart. i always try to “act as if” but the pain i carry around…i don’t want to be carrying it…but i can’t drop the rock for good. i’ll have a day or two that seems fairly good but then i crash again and the depression and despair close in. my mind won’t focus…i guess i fall into a mental obsession where it feels as if those ghosts are sitting in the room with me squashing my heart, gripping my throat and filling my mind and veins with cement.  depression and anxiety circle me even when i’m in a crowd and trying to do something i love.

people must be able to sense it. i’m not a nasty, mean or overly sarcastic person. i’m quiet and generally nice…but people just stay away from me as if i had a sign saying “she’s contagious”. and i guess depression is in a way contagious. people want to be around happy people. like attracts like. as long as i feel alone and depressed i’ll only attract others who are in just a bad place or people will continue to stay away. but hell, even my depressed friends stay away from me.

damnit…i have tried so hard to get somewhere better…spiritually and mentally. the great lengths i go to that are practical and spiritual just don’t seem to be helping. it’s this brooding depression that convinced me that maybe i need to be back on some small amount of medication….but to be honest…medication or none…my moods seem to dip to their pre-set depths and i seem to wear them like a robe. it’s been so long and i remember when i was different. i was happy, outgoing, energetic…i was a doer and i took initiative. but now…i can barely talk with people. people used to want to be around me…my phone rang and i had things going on…but now if i never left my home for a month…not a soul would notice or call to see if i was ok.

yeah the hurt is bad and it’s not just a mood thing. it is a life thing and i’m not sure i should go into it all a put it out there. but much of it started over a decision i made when i was in my early 20’s. my family never let me be anyone but that 20something person. i’m 45 now and the consequences and constant pain i’ve had to carry are honestly starting to kill me. most people who have to bear this kind of pain so intensely for so long usually get cancer or something and  are fortunate enough to be taken away from the pain. i can see how people get so sick from a soul killing pain. i don’t know why i’ve carried on as well as i have. i don’t know why i haven’t been diagnosed with something terminal. i guess my punishment has to be this…exactly what i’m talking about. i never get to escape it for long. a phone call…a comment…a sharp jab…a photo…a smell or sight and the pain is there. there is just no way to get away from it. even with all the spiritual practice i have under my wing…god i can help others…at least i used to…i believe what i tell others about dealing with their issues. but believing, practicing and having it in your heart and soul are just different things.

i have only myself to blame for the mental torture i endure every day. i did what i did over 20 years ago and i lived the resulting life. but i tried to live it well and be a good person in every way i could learn to be. but being a good person is not what makes the world right. i don’t want to  pout that the world is unfair. it is and it has to be that way. no i’m not looking for some justice and fairness. that’s not it. just a simple joy and peace of mind. but please don’t try to sell me some cure all answer for this. i’m not that desperate or gullible.  i trust God and Jesus. i believe in what AA teaches me. i love yoga and several other spiritualities. they are real and they do work. but i can’t seem to reconcile this dark shadow or cloud that follows me everywhere. i should move to montana where people go to really be alone. seeing all these happy young people, families, people in love just doesn’t…it should be happy, but it’s sad to me. i think of the family that hates me and that i can’t connect with. i think of the father who hated me so much that his last statement in this world before he died pointed to that. i miss the daughter i can’t be close to. i miss all the people and beings who’ve died or left…everyone who ever mattered to me. i’m not suicidal. i have my dogs who i really do love so much. there are good people that surround my life, but they’re not in it. i love my home and i want badly to not wish i was somewhere else. i don’t believe in geographical cures. you take yourself where ever you go. but sometimes i dream of just walking away. changing my name and not telling the new people in some new place a single thing about my life’s story. maybe if i don’t see and hear constant reminders of tremendous pain i can forget it enough to let it go. it may find me again, but i’d love a remission.

i guess i’ll just try to shower and get to a yoga class…i can fall into that world for a bit. maybe a meeting too. don’t worry….this is the norm but i thought writing it down and putting it somewhere else besides my mind might help somehow.

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monsanto is everywhere. while this is not a new clip i think it’s important to link this to the others that i posted:

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ok, i’m a chinese crested owner (a hairless dog). i also have fibromyalgai. i just thought this was an interesting article about people using hairless dogs, xolo (of course cresteds would work as well) as therapy dogs for the treatment of pain conditions such as fibro. of course just having a dog or two or four always helps keep the spirits up!

link:http://www.naturalnews.com/019458.html

dogs

Heat-generating dogs treat fibromyalgia pain in humans

Friday, June 23, 2006 by: Elisabeth Deffner
Key concepts: Dogs, Fibromyalgia and Service dogs

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sorry about the formatting. i can’t seem to get this to flow correctly.

i was sharing online about my fibro and of course my history as a person recovering from substance abuse and…what happened when i was treated long-term for pain management. bits of this story are strewn through out my blog. but this is a bit of how my fibro and addictions interacted. again, this is my story and my opinions…remember this is a blogg page and what i say may not work for, or be relevant to you.  this information is not to be used in place of seeking professional help. please, always discuss your situation with your practitioners. please, always do your own research.

…so i guess that leads into the substance addiction/dependence discussion. i
don’t mind sharing about it. i think it’s important to talk about
considering how many of us (fibro patients) are faced with chronic pain and often
accompanying depression. the two can often be a recipe for disaster for
anyone. keeping the issue on the front burner in the open may be people’s
best insurance. i don’t believe genetics are the only reason that dependence/addiction happens to
people. life’s circumstances can be overwhelming and with doctors often
being too willing and reckless with their prescription pads…well it can be
sad. fibro patients can be particularly vulnerable finding many of the
people closest to them pulling away or making them feel as if it must be in
their heads…”if you would just get out and do something”, “stop spending
all of your time in doctors offices and reading about it”…ughhhh with often no
where to turn, all the symptoms beating you down on you. oh, it’s
easy to understand how dependence or addiction can become an additional
issue for even the “strongest” and “most knowledgeable” of us. it happened to
me.

i was in the middle of studying for my masters in counseling. i was
interning in CA at a maximum security facility for the criminally insane, in
the Alcohol, Drug Education Program…i had been in AA for years and then
was interning with juveniles charged with felonies, doing…you got it: drug
and substance counseling (and regular counseling). with all that around me i
had to wonder how i thought it couldn’t  happen to me. i never abused or
sought out pills. i was honestly afraid of drugs….even prescription. i have been a recovering alcoholic since ’97 but it was never about anything other than alcohol. recovery was difficult with fibro constantly nagging at me. i had being prescribed vicodin on and off for several years for managing pain in my neck and shoulders. i had horrible fatigue but no one around was diagnosing chronic fatigue or
fibro then. i went on for years like that and whenever the pills ran out i just lived
with the pain. the pills never really helped the pain or had any affect on
me…that i noticed…i could take ’em or leave ’em (so i thought). i had to have surgery while i was
in CA and the chronic fatigue which had been diagnosed by then, was really
dragging me down. the surgery wasn’t serious but i was prescribed vicodin again. and the stress of recovery from a seemingly simple operation still wore on me. i began to believe the vicodin simply relieved the pain enough for me to be more active…i never noticed that by then i may have been feeling a “need” to have them. i came home and continued on with my life until i got
very sick and was diagnosed with osteomylitis…very painful. i was given
some powerful doses of pain medication and for years after that anyone would
write me a prescription for pain if they knew what i’d had. (well that and the degenerative disc disorder). i wasn’t getting “high” or consciously abusing them, i know now that i was simply trying to avoid going through withdrawal (believe me there is a difference). the
doctors who knew i was a recovering alcoholic…well they all knew…never
reviewed or considered what might be happening. it wasn’t until i blew the whistle
myself, that they all went “oh…yeah!”

 

well just suddenly stopping them was a disaster. i didn’t know why i was so “uncomfortable”…i was in “cold turkey withdrawal. the discomfort seemed intolerable and i stumbled… i relapsed with my drinking. i went down for the count and
was drinking again for almost a year and a half before i decided to pull my
head out of my…the ground.

i sobered up but still didn’t get to feeling much better. yes the fibro was
always there but there was something else still wrong. i was wrestling with unrelenting anxiety and depression. i started reading
again and i found it. i had been on klonopin for over 11 years! i missed that and no one
around me ever said anything…even after my disaster with the pain meds. long term treatment with benzodiazapines can create those symptoms in most patients and your body will be…physically dependant…meaning if you stop cold turkey you will wrestle with withdrawal. and after a short time, with out constantly upping the dose, you are no longer receiving anything more than a placebo effect…you are just avoiding going through withdrawal. the withdrawal mimics what you’re taking the drug for and resuming it simply stops the withdrawal symptoms, appearing to fix the anxiety again…and so starts a crazy cycle…but it’s a cycle that’s difficult for me to describe well. go to benzo.org for more research on the topic.
so…i endeavored to get off all the meds. my doctor said i was begging
trouble and wouldn’t help me. he closed my files. gee, if he could up and close my files after 11 years of a compliant relationship…why didn’t they pin me down and say enough already with the klonopin! i couldn’t find any doctor that would help me and with one last prescription for what was supposed to be enough
klonopin to withdraw from…yeah give huge bottles of klonopin to a person with a history of suicide…begging for trouble…but i wasn’t going to go there, even though i felt like it many times. believe me i could rant on over how betrayed i felt by my medical community after over 11 years of compliance and hard work. but i need to stay focused on “the solution”.

well, i set out to learn how to withdrawal and what to expect.
my prescriptions were going to run out and i had to do something. the
short of it is that i withdrew faster than is recommended…it was very
rough. i took just over 3 months or so. april 25 was the last day i took a dose of klonipin. no more p-meds.

that’s the short of the long of it all. i have many entries about my
withdrawal from the meds on my blog page. there is other information there
too and i touch on a lot, including my fibro. i’ve had a bit of a complex
life…not a pretty or happy story. but i’m here and plugging away. i have
bad days, really bad days and then…the wonderful good ones. i try so hard
to hang my hat on the good ones…those have to be what i see more than the
others because they are precious and few. but i can send you to my blog if
you ever want to read some. it’s off focus re fibro…i am still taking lyrica, and i’ll wait a bit before making a decision about that one. i’m not fond of it but it seems to help quiet the symptoms.

but re dependant vs addicted…i don’t think there’s a difference. look them up in the dictionary and you’ll see they cross reference. that’s
why they call them “chemical dependency units”. dependency is just a “nice”
word for addicted…perhaps a more accurately descriptive word. “addicted”
sounds ugly and has horrible connotations. i guess we see addicted people as
whoring around street corners with unsavory crowds…the depictions are not
nice. but you don’t have to be homeless and dirty to have a serious and life
threatening and life altering situation going on. i’ve met many an elderly
woman and man who never even took hardly an aspirin their entire
lives…only to find themselves “addicted” or chemically dependant in their 50’s and 60’s. there are
so many similar stories and far too many go unchecked because of the stigma.
pain management and management of chronic illness is a blemish on the medical
community and no one wants to look at it. you see if we deal with
withdrawing people safely from meds and are vigilant over people’s use of
meds then the medical community will have to admit to a bigger problem. the
fact is that dependency or addiction in america is epidemic and who knows
the number since so many poor people don’t know what’s happening to them.
either docs are leaving them on substances they’ve developed a tolerance to
or they’re just yanking them off with horrible consequences.

 whether it was my 11+ years on klonopin or my adventures with pain
medication…i may be an alcoholic but the whole romance of pills never attracted me. i trusted my doctors. i’m sure we were all doing our best, the fact that i was an alcoholic should have
been a red flag, very early on, in the management of my care. at the same time, they shouldn’t brush
myexperience under the rug because “i had a predisposition”. that just isn’t right. this happens to far too many people who go through exactly what i did…alcholic, predisposed or not. it happens. i never saw it coming…even when my
behaviour changed. i’d always trusted my doctors to watch me, even when i
couldn’t see what was going on. i never hid or lied about my alcoholism. if
i wanted to abuse drugs….i might have. i did some dishonest things once
the dependency or addiction was full blown…but i was also the one to call
it quits when i started to feel that something wasn’t right. if it had been up to them i’d still be toting bags of pills. oh i
could go on…that’s why i started a blog. i have too much to say and i’ve
read too much reliable and alarming research. i pretty much only look at the NIMH, WHO,
Mayo clinic, Harvard, Lancet and such peer reviewed articles for the most
part. i rarely pay attention to anything that does not come from a source
that i wouldn’t feel confident quoting in a graduate paper. pull a bad
source there and you’ll hear about it! there’s too much “alarming”
controversial stuff written about this topic and you have to be careful in
sourcing. i’m sure people will read my blog and perhaps they forget that this is mypersonal blogg page. i’m expressing myopinions. granted i don’t buy into conspiracy theories and i read more peer reviewed research than i need to, but what i say and write is still my opinion. this is not a medical site but what i write is a response to my personal experience and…research.

so…that’s probably more than you wanted to hear or read about this. i’m
always willing to share this information and my blog with anyone so don’t
worry about sharing this information or me as a source. i’m not a licensed
professional…just a person who’s had to learn the hard way. maybe i’ll
have my license one of these days. god willing.

gee, take care and find one thing to smile a bit about. i’m glad you asked
me about this…it helps to share. some of this is still very fresh for
me…some is soooo old. i’m sorry to hear about your dad…i have to say
that strong wasn’t the only thing that may have helped me through…call it
luck, call it god, call it some good friends…i was one of the fortunate
few. more people don’t make it than do by no fault of their own. it’s kind
of like fibro…no one wants it and if we could change it we would. the art
is in living with it i guess.

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i guess in light of a recent suicide in my community i’m looking at an issue near to my heart and life. suicide.  in the “against medical advice” blogg the author shared an all to common experience of people who’ve woken up in the ER after an incompleted suicide, http://agmedad.wordpress.com/2008/04/10/incompleters/#comment-6509

this is the response i wrote…i need to write about this because i really can’t talk with anyone around here. it would be to “self-absorbed” for me to become introspective…what i have to share couldn’t possibly help anyone i know. but i’ve been there and who can better tell you about the moon…the astronaut who walked on the moon or the man looking through a telescope.

funny how people react to suicide. we recently lost a member of our community to suicide. it’s been hard for me to be around everyone as they “mourn” and deal with the shock and all of the “what could we have dones…”. i’m a suicide survivor. my last go ’round was the most grave and was unknown to others for over a year. i never attempted to get attention except everyone seems to think that a “failed” attempt is an attention getting “gesture”. NOT! it was very personal and after my last attempt i shut down completely…not eating, not talking…just staring…i lay on my sofa for months and prayed for god to just let me stop breathing. i always hear from people around me that suicide is a permanent solution to a temporary problem. but my problem has been around my whole life. i began suicide attempts when i was a very young child. i’m sure there are several of us that did, but no one recognized eating poisons as a toddler as being anything other than the result of a lack of supervision or accidental. for me it was painfully intentional. in the process of being punished when i was about 5 my father told me what “dead” was. i knew that eating deadly nightshade berries would “make me dead”…so i did…often. and i never stopped trying. my last attempt was in june of ’05 and i’m almost 45. this was no temporary problem.
 
i have had numerous horrible experiences in the ERs over the years. believe me…i really didn’t want to wake up there either. but their cruel words went to the sticking place and echoed in an already angst ridden mind. this anger that the medical community and even mental health community has regarding suicide is more damaging to a suicidal person. in an ER they only see you that night and they have NO information about what brought you there. the suicide itself is only a small part of a much larger picture. and granted i know of people who threaten and gesture suicide as a manipulation and as a means of getting attention. it is those people who’ve given the rest of us a bad rap. they do not mean business. it’s non the less serious as even manipulative gestures can result in death. but all the more reason to treat anyone who is suicidal with compassion and concern. i know suicide is scary to face for all involved parties and i know there is a concern that giving too much attention to a suicide attempt may reinforce the attention seeking aspect for some patients…but that is not true for all of us.
 
perhaps if people were more willing to address my suicides (they were not attempts…parts of me died each time) as a serious issue i might have been able to come back…i am still not well in that area of my life. i think i might romance death until i pass over. i don’t feel suicidal now but i have to admit that i always romance the thought. i hold it private to me because i’m all to aware of the cold and stony hearts that turn on you when people know. i stay away from people sometimes just because of the “me and them” in this whole area…it does drive much of my life all the time. it never goes away. it’s like a homesickness of sorts. and while i do deal with life problems often in very healthy ways and i live life with seemingly more joy than some…it’s always there. i do treasure life and maybe i value the good times so much more because i know that they are gifts i shouldn’t be experiencing. i don’t wallow in self pity…i’m not a glum, depressive, brooding or self-absorbed person as many would identify a suicidal person to be. having a second chance is something i am grateful for. but i wish i didn’t feel such an outsider as this ER doctor would wish us to feel.
 
the pain is real. the pain is often a life long experience and there are suicides that aren’t for attention or solving a temporary problem. maybe it’s simply wanting put an end to having to try just to damn hard to live. and docs like this…they don’t help those who deal with sucidality as a lifelong issue. i stopped trying so hard to live. my attitude of “i don’t care” is often brutal and destroys most ambitions that dare to peak my interest. while i have “bursts” of ambition and hope…i honestly live my life at 10% most of the time. i can’t seem to die but i can’t live well either. i don’t see the point in trying to die anymore as i believe this decision has to be god’s. reading and hearing things like this article are sad. but i’m glad you’re posting this and i’m glad people are seeing and discussing this prevailing attitude because it is deadly.
thank you for the post.
this is an exerpt from an article about suicidal children:
Many people have thought that the main reason that children and adolescents try to kill themselves is to manipulate others or get attention or as a “cry for help”. However, when children and adolescents are actually asked right after their suicide attempts, their reasons for trying suicide are more like adults. For a third, their main reason for trying to kill themselves is they wanted to die. Another third wanted to escape from a hopeless situation or a horrible state of mind. Only about 10% were trying to get attention. Only 2% saw getting help as the chief reason for trying suicide. The children who truly wanted to die were more depressed, more angry, and were more perfectionistic. read more: http://www.healthyplace.com/communities/depression/children_9.asp

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my counselor and i began discussing polarity therapy…energy work. i wanted to read more about what exactly it was. i’m very familiar with a variety of yoga, meditation and have had reiki, massage and acupuncture work done…but i wanted to know more about polarity therapy because this is just another area that  can use improvement when one is trying to work towards a healthy lifestyle. so here’s a good, straight forward article, from the american polarity therapy association, on what polarity work is: http://www.polaritytherapy.org/page.asp?PageID=24

an interesting book that my counselor gave me by caroline myss, phd, called “why people don’t heal and how they can” (also wrote “anatomy of the spirit”) deals with incorporating energy work into a holistic mind, body, spirit approach to healing. now i know the title might put you off, but i’ve been following other works that deal with “road blocks” in healing and this is a positive and good read if you’re experiencing “being stuck”.

http://www.amazon.com/exec/obidos/ASIN/0609802240/interactiveda936-20

i’ve been at this “wellness” gig for over 20 years. i began searching out many spiritual and nutrition based approaches as a teenager. initially i was concerned with the usual teenage issues like acne and weight but what i discovered, worked, so i stuck with it. as i was digging around that community, which was very small back then, i met a lot of people and was turned on to a variety of readings and experiences. i was learning about ways to heal some deep inner pains that i was already wrestling with, and having some horrible consequences from very bad, maladaptive behaviour and personality issues. i became a devout buddhhist in my early twenties and the search continued. but i am convinced from the many positive experiences that i’ve had, that this whole arena of mind, body, spirit healing is key for living well.

i still struggle with a lot. i’m not whining, but life just can never be normal for me. i keep stumbling across huge hurdles and crashing into brick walls. by now my problems must largely be due to brain damage from all of my collisions with life! but MRIs and other say that, anatomically, i seem “normal”. my gastro. dr came into the room a few days back, sat down and looked at me squarely and said “your tests are normal but…you are not!” and we laughed.

so, after over 11 years on a battery of psych meds for bipolar and spotty treatments for fibromyalgia, i felt i was not longer benefiting from the pharmaceuticals and was going broke in the pursuit of maintaining that. i guess i’m finding out that no matter which direction you go in…if you live out here…it’s not going to cheap and access to help is going to be limited. moving is not an option for me. so i have to work with what i   can  learn to do.

just what can i do from learning? i can maintain a healthy diet and exercise (walking, yoga, physical therapy). i can work on my spirituality (reading, AA, community). i have limited access to a counselor but she’s great and that’s what counts. books and videos are helpful. i have a good thing with my AA community and they do what they can (moral support and other help). there’s the phone, which can be my lifeline on days that i’m not doing well. the internet provides many opportunities to learn of up to date information on nutrition, techniques and therapies. while attending classes and having practitioners would be optimal…you do what you can. at best, things can get frustrating…very.  but when the rewards appear and even if they’re small, it’s great. you learn to appreciate the small things because healing from life long spiritual wounds and chronic issues is a slow process. i may rush with some things but i can’t afford to be down for long or maintain costly therapies that i have no funds for. but much of my process is about patience…the patient practices can be a long and lonely journeys some days and it’s easy to get despondent when you are just plain hurting and down. i’m not a monk…i’m just human…a sick human trying to heal.

while i’m off all of my “psych” meds i am still taking lyrica. i don’t think i’m fond of the lyrica? i take melatonin and it does help me  sleep very well and i wake up feeling good. i ran out of guaifenesin a couple days ago and found out just how much that was helping my fibromyalgia. i ran into the 4 corner town a few miles down the road to see if they just had something containing guaifenesin…i didn’t think they’d have what i take, but i found it…after half an hour i was feeling much more on track. gaufinesen an oddball therapy for fibro but it was in the book my dr. gave me and i thought i could try it…it seems to really help. (Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin J. Starlanyl and Mary Ellen Copeland)  also a good article on guaifenesin therapy: http://www.fibromyalgiatreatment.com/Articles_HYSTERIA.htm for now, i’ll take any help, because simply being able to do anything but lay on the sofa is an improvement and i need to be able to be up, moving around and communicating. i’ve got a lot of writing to do and i’m just trying to avoid it right now!

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well, i do have a bit of a bee in my bonnet. it’s about the accelerated taper schedule i needed to follow. i don’t harp about my life’s circumstances…the one thing that can drag me down faster than my illness, because it won’t help things and it’s not the topic i’m working with. but i’m sensing some bristling of hair regarding faster tapers. i fairly, thouroughly understand the multifasceted need for doing a slow, supervised taper. many people make sacrifices in order to manage their health. but when you have nothing  left to sacrifice…well, i think there is a great lack of empathy for the circumstances of some people needing to get off meds. this may be a hard concept to wrap your head around, but protracted withdrawal is a luxury  people take for granted. i’m sure you can throw a list of how you have been able to do lengthy tapers with limited resources…but do you live in rural appalachia? my county (s.e. ohio, west virginia) and the neighboring ones, make national news for joblessness, hunger and poverty all the time. my mother sends me the articles from the chicago tribune! we do have an extraordinary situation here. being poor in or near a large city is very different than being poor and living hours from a major city and living in a region not known for being “progressive”…we are not a hot spot or major destination for research and development. yes we have pockets of that if you’re looking at obesity, diabetes, COPD, etc…poverty isa major contributor to those things. it is easy to condemn what you don’t know…believe me, there are a lot of unknowns. being poor and new on the learning scale does not make one the enemy…we just need accommodations…so many of us give up the good fight because of the stigma. but if you’re diagnosed mentally ill and you’re dealing with income issues maybe you can begin to have some insight into what “stigma” means?

i avoid this topic because going there…i can find myself feeling irritated….i’ve been butting up against it for too many years now. (i’m fortunate it hasn’t been my whole life. it may be harder because, for most of my life i was reasonably successful and i have a hard time understanding why i can’t pull myself up. but i’m understanding how people can “get stuck”. i just don’t want to stay stuck. i believe i can get out of this. but judgement and stigma can put more weight on you than almost anything…if you let it. i won’t so that’s why i’m writing instead of feeling hurt, defeated and just walking off. i don’t have a lot of love and support around me…except for AA where i let people in. i have no available, supporting, family or a spouse. my love and support has to come from with in and from god.

in an area where just day to day survival is a massive struggle…mental illness and surrounding issues are a luxury. that may be hard to swallow…but if one can’t understand that, then you are probably blissfully ignorant or naive! (check out mental illness in developing nations! my friend just came back from a 2 month visit with her family in kenya, after being in the US for over a decade. she was given diagnosis here but…that’s still another issue worthy of inspection so you don’t take for granted what you have here.) i am back in survival mode. i am not considered quite “poverty” and don’t have medicaid. i have medicare, but don’t have enough of an income to afford uninsured care (and most insured care). i can’t work right now, and often can barely manage a shower and making it to an AA meeting. thank god for AA because it’s free, but i have to be able to make the 25-30 minute drive to and from! but i don’t have a husband, family or really friends that support and understand withdrawal and fibromyalgia  issues. my friends and community are good people but this is not their gig. this is a rough spot to be in! i would have never understood it myself, if i hadn’t found myself in this position. living here over 11 years and i was ignorant and naive to this. being caught in the middle of the socioeconomic stratas is just that, caught. i’m not using the words ignorant or naive to be cruel or condescending…they are by definition, the appropriate words.

at least i can find some information that is helpful, but i have to be able to do it or it’s just “information”. i always thought that where there is a will there is a way.  but “way” requires money and access. and hey no money no access! even supplements are ungodly expensive. in the past i could afford them. so necessity is driving my schedule and my life now. some of us are…no all of us are doing our own personal best. and we all have our own personal necessities…i like to call it personal velocity.

this is largely uncharted area that we are going into. little is still really known, and much research is showing up about both withdrawal and fibromyalgia. we know more now, but we are still learning! each of us are pioneers in trying to deal with these health issues. i think we have to be supportive to everyone’s approach. there are many strong feelings and there will be in these fronts. but if we let our emotions and opinions divide us (even a very informed opinion is still…an opinion)  rather than showing support for the entire community we will greatly weaken our efforts to move forward. i have been fortunate to have been in AA for over 10 years. i have a lot of experience with diverse populations finding many paths to a common goal. it is the common goal that holds us alcoholics together, not our means. yes, we all practice the 12 steps, but even each take on the 12 steps can vary. if we scrawbled about the details, the AA support circle would shatter.

the common goal we in the “off meds” community share, is living drug free (or with minimal medication). we will get there if we maintain that focus. everyone has something valuable to contribute…for now we really only have each other. with love and room for growth…more people will join the ranks of being able to actively contribute and support others.

contempt prior to investigation…not cool. don’t pass uninformed judgement on the choices others have to make in their healthcare. we are not equally provided for or have equal access in that arena…not even in, god-bless-america. not even with information. we can not demand it becuase we have to do for ourselves…that recquires creativity and weighing options…assuming you’re fortunate enough to have them. PEOPLE DO NOT HAVE EQUAL ACCESS TO HEALTHCARE IN AMERICA…please understand this becuase it’s real and its now and it hurts.

big pharma would love to devide and concour us, but why bother if we do that to ourselves.

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