The scans  came back normal.

I am devastated. I really believed that the answers would be in those scans.

The reason why I was seen so quickly was because the consultant thought I was developing myleopathy which is an infection of the spinal cord.

Of course I didn’t want to have that condition, but I hoped I’d have something that could explain my pain.

As I sat in his office in tears, the poor man was looking desperately at the scans to find something that would stop me crying.

He said he was going to refer me on to a neurologist to see if they can see something from this scan that isn’t in his field of medicine. He also ordered that my lumbar spine is scanned because they didn’t do all of it.

I now find myself at a crossroads. Should I wait for the neurologist to have a look at my scans and wait for a lumbar spine scan and see if there are any answers, or start going down my alternative route which is trying a course of different types of therapy?

I’m honestly torn. I want to improve, however at the same time I want to know what the hell is going on. Part of me wants to do a private consult with a neurologist to see if they can see anything from my scans.

My 1st thought was the buy the scans and take them round to a private neurologist and ask some questions. Then I found out that the whole process of getting them could take a few weeks.

I went to stay in my empty flat for a few days while I tried to figure out what to do. Of course I had my well read copy of Value in the Valley, and the advice I’ve got from it is to be still and wait.

When you don’t know what to do, don’t do anything! When you are not sure, not clear, don’t move. The time to get clear is that very moment  when your back is against the wall…. At this very  moment you are at your weakest… That is when you tell yourself STOP! I don’t know what to do here! I need help!

In times of confusion, we do not want to understand, we want to get out of the situation… You cannot reach true understanding from a place of mental and emotional distortion and panic. This is why you must stop. Get still… Once you are still, the brain slows down and you are able to gain some insight and understanding through the process of discernment

This is exactly what I’m going to do. I’m not going to talk about it with anyone. I’m going to meditate on it every evening until I have my answer.

I have one bad day after the other…. and the next seven days don’t look much better either…. it’s raining and has been and the weather report calls for rain the next seven days…. that’s not a good thing.  But I still have to live and do as much as I can….. and that brings a point that I feel the need to make…. so many times people think that if you are in pain that you must act sad or grumpy and if you smile or laugh then you must not really be hurting too bad. That is so very wrong when it comes to living with chronic pain or chronic illness….. it’s really just the opposite…. you learn to take what moments of joy and happiness you can and sometimes you can push your way through it all…… and there’s the true rub…. because sometimes you can’t push your way through it and then you have someone say… well you did it yesterday when you felt bad so why not today or right now? And there is no simple answer except that, that is the nature of this illness. I’ve reread my last post and boy was it rambling and I soooo want to go back and edit it…lol…. really want to, but other than to correct some spelling that my auto spell check changed to the wrong word ie… soring should have been soaring and wither should have been whither….didn’t pick up that I left out one letter in each of those words…… well see how I can get about wanting thing right…. I’m doing it now…. jeez…. move on gal move on… I have said I want this to be honest… so I’m not going to allow myself to go back and fix a post except for spelling…. that’s the deal I have made with myself in order to keep it real…. and last post “I Wish” was real….lol…. tired and in pain and wandering in a fog….. but sometime that fog can be an advantage…..it keeps you from seeing the harsh reality of this disease glaring at you all the time….. so I’m going to try and see the next few days as a time to just rest and watch old movies or read….lol…. maybe pretend I’m back to my favorite cabin in the mountains and wait for the fog to clear…… I think I’ve done all the damage here that I can do…. chuckle…. and a small smile….yes this blog is going to be a challenge for me…. but no rewrites….boy oh boy….. well if anyone is reading… just know this is not your typical blog so don’t expect it to be… but come as often as you like…. some folks like to see others make a fool of them self…lol…. now I’m going to take my next dose of pain meds and try to sleep …….so if the fog clears and you’ve been here I’ll say hello…….. Lila

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A Letter To Fibromyalgia Describing Multi-Modal Chronic Pain Treatment

People get sick. They get hurt. People have anxiety, depression, insomnia, and stress. Sometimes they are taking serious medications, ones that are strong enought to create their own side effects.

And then, to add insult to injury, especially for the uninsured, some providers of health care charge fees that put the health care out of reach. The justifcation seems to be that because it takes so much time, money and effort to become a chiropractor, acupuncturist, physical therapist, osteopath and of course M.D., that it is appropriate to charge sky-high fees.

If you have been sick, or in pain, and in need of health care, and have been unable to afford it, how did that make you feel? I have heard people use these words: ashamed, helpless, frustrated, and angry. Is there something wrong with people’s values that they can’t come up with $85 to get an acupuncture treatment that can help them sleep better? What about how when someone really needs a course of treatment, so say twice a week for four weeks, what’s the problem with forking over…$680 for a month of acupuncture?

Is it OK to profit from pain and illness? Does it make sense to buy big houses and sports cars because enough people were in bad enough shape to pay the high prices to try to get better?

Don’t get me wrong…of course health care practitioners need to make a living. Of course they should get paid for their services. People who take care of people need to take care of themselves too…acupuncturists don’t need to give everyone a free treatment (how would they eat?) They don’t need to be martyrs, or worry about paying rent. I think caretakers should be well cared for. They do a better job that way.

And it is a good thing to be smart in business. To attract people that could benefit from effective, affordable health care is great. The news should be in all the papers and trumpeted from the rooftops.

What I am saying is that acupuncturists and other health care practitioners should see people needing help and think, with integrity, “Can I help? How?” Not “How can I help…and how much will I make?”

One thing I really love about owning a sliding scale health clinic is that I feel absolutely no discomfort telling someone that they need to come several times a week, even if I think they should do that for a few months. I am not asking people to come in for a course of treatment with dollar signs in mind, but with their best interests at heart.

I am doing my best to help people. Why is it so rewarding? Not because of the potential to make money, but precisely because money is not the focus.

If you have a community acupuncture clinic near you, ask the practitioners how they feel about their career. I will bet you they will tell you that they love going to work, they love the people coming for treatment, they love the growing of community. Then ask the ones who charge the highest prices. It seems unlikely that they are seeing people over a long period of time (and not because they are somehow genius at what they do). It seems unlikely that there is much of a community healing atmosphere.

Most important, ask the people experiencing community acupuncture. They love it. They see what is going on…that this is health care designed to really help people. They are getting better, and feeling good about it. And THAT is what matters.

And you thought I’d abandoned y’all… Never fear, I can’t miss my weekend preparation, so here we go again!

I’m no fan of ergonomics for ‘preventing pain’, despite my couple of postgraduate papers in it! So when I found these couple of cartoons, I’m sorry I couldn’t stop myself…

I’ve been needling acupuncturists for a while now – perhaps after this I should stop?

OK, OK, I’m retreating NOW!
Have a great weekend!

Ok its cody.   i just read this.  and i got the vid she wanted on her to load.

 to some things she wrote here – umm… to others, wow amy shocked the shit outta me.  i’ve always considered her this really cute twittery air-headed kid even tho we’re the same age.   I had no clue she had even the capacity to get such insight into Drake and what makes him tick. 

i did noticed something tho.  her brain’s kinda scrambled or something cause she repeatedly refers to the song on the vid she posted in her entry last nite – that bon jovi one – cause there aint no music on this one.

  anyway so amy speaks and mountains move?  well maybe shake a little at least anyways.  we’ll see

*

*

K so i gotta write about this thing some more. but 1st i’m gonna post one of my personal fave moments of Jeff Hardy – when he jumped a 30 feet drop swanton on the evil orton.

 it hapens about 4-5 1/2 minutes into the vid as you watch his struggle with himself as well as his determination to end the evilness attacking him and his as he climbs higher and higher with orton further and further below totally kocked out. and then.

and before he jumps, he does this defiant i will not be beaten attitude thing and screams so similar to I’ve seen Drake that it kinda wigs me out.

I know at those times i seen Drake do stuff like that or heard about it later it both terrifies me and makes me feel safe cause i know that dude with him fighting FOR me, aint nobody never gonna get me and keep me to hurt me.

*

 anyways so in this vid below, Jeff swanton jumped that death-defying leap and dude everybody thot they was both gonna bite it. its so real and so obvious and you can tell from the un-miked talk of the paramedics off-camera.

here once again, Jeff (again like Drake has done so many times) had done somethng out of incredible recklessness and determination

and then determined to finish it, make it right, do the right thing, he threw all caution to the wind, refused to quit, refused to be beaten, and risked his own life – willing to sacrifice himself to stop this person who was trying to destroy him and his. (yet another thing anybody who knows – and aint gonna lie about it – has seen or known of Drake doing)

minutes of pandemonium following this incrediible disasterous moment on the video as you can hear un-miked paramedics talking to each other. they attend to orton first cause i think thgey really was afraid he was gonna die right there in front of thousands (it had literally happened just a few years ago at another event to one of the Harts, and its happened several times over the years that the wrestlers get literally killed in the ring)

so trhey fast as they can to orton, who looks dead but you can hear the parametics saying he’s still breatyhing and telling each other to hurry.

 then the other smaller set of paramedics attending jeff are joined by some of those who’d been on orton and they get him finally extracted too from the destruction he’d caused when he landed and all the debris covering him and just everywhere by his reckless, extreme, foolhardy behavior that he was convinced he had no choice but to do (yeah yet another so-Drake behavior that i’m kinda getting wiggy just ttrying to write this and work thru it.

then as they wheel jeff out about 10 minutes 20 seconds into the vid, he raises his hand to let the people who loved him (which is like almost everybody who loves pro wrestling – he’s a huge hero) know he was still there fighting to live. evil did not beat him.

 (and yeah oh god but i swear that too was so Drake – always always worried more about his loved ones than himself – sening a message “i’m here, don’t give up on me, dont forget me”)

*

See? evil has never beaten Jeff Hardy. nor loss nor tragedy nor stupid mistakes. nothing. nothing has beat that man. many think he’s so driven and determined and “extreme” -

 they actuallyl call him “the extreme enigma (and umm doesn’t that also describe Drake too?) –

that Jeffs likely to join those who’ve died in the ring.

 and you know i think part of him wants to die fighting. i know Drake does. he’s said himself many times that he’s by god gonna go down fighting to his last breath.

 anyway here’s the vid

k i’m not done. its still pouring outta me like a broken water main shooting high in the sky and you cant turn off

 amyway so this is about our Drake and me still trying to get hold of all this and corelate it to what i been going thrui for months and why?

but how many times have i seen or been told of Drake fighting on no matter how hurt,how exhausted, how stacked the odds are against him – standing true to himself, standing on his beliefs, on his honor?

takingt sttupid outrageous risks, afraid of nothing, willing to risk it all for his goal or his loves? ,more times than I can count. and for those who really know Drake = and aint gonna lie – they’ve seen this all too

*

then there’s that song with the vid. omg for real soembody could tell me they channeled Drake when they wrote that song and i’d belief it. read this and tell me it aint him…

“this is for the ones who stood their ground… who never backed down. its my life.i aint gonna live forever. i just wanna live while i’m alive.” …”its my life” …Bon Jovi

*

 i think its the ‘its now or never’ part that’s drivinghim n ow like a locomotiive, like a bat outta hell, like somebody almost possessed – he desperately wants to convey some things before we die. he keeps saying and i belief him that he desperately wants his life to have counted for somethiong to somebody, he wants to have left this world having made a positive difference somewhere, anywhere.

 no that aint the Drake many knew in the first few years he was out. and it aint the Drake that was annihilated (AFTER he had changed oh so much for the good) by them that professed to love him. but its been the Drake people here – and people that won’t lie about it – has known for years. he truly needs to leave some positive legacy. i pray he gets to.

i’ve seen my dad Drake these last few years get heartbroken over and over. i’ve seen him so beaten and destroyed that nobody thot he stood a chance in hell of making a comeback. I’ve seen him stand on his honor no matter what every damn time – again, like Jeff Hardy, NEVER faltering on his belief, on his version of “honor”.

 I’ve seen Drake exhaulant,defiant, rebellious… I’ve seen him beaten and thot destroyed more than once. I’ve seen him determined.

 he gets this one special look when he’s determined. there’s a still of Jeff on that clip with him having exactly that look of Drake on him too – that determined as I said above you’ll have to kill me before I quit look. well and there’s more than one of other very Drake looks – exhaultant, defiant, bite me. them that also knew him 3D will see too whether they admit it or not

 *

so now i finally know. i guess evidently we all do here now. why i been having these hysterics over Jeff and all he’s been thru this last year. when i saw this vid and that 1st still of the painted tragic face – that Jess says oh yeah he gets exactly that look – and the others too – outside as well. when i saw that, i just feel apart and it all became clear – somehow i transposed Jeff and my dad, Drake. their lives have had many parallels

and that song – its my life by bon jovi omg that coulda totally been written about Drake. let me live my life. let me have a life – ANY life. let me be myself just sometimes, just a little.

*

 everybody who knows us knwos that i was afraid of him a d them other dark ones (here they’re called bads by well the goods and they call themseves “the way”) that came with him after the labyrithine block got accideentally broke by drew when he got obessed there was other people here somewhere and he could feel them or something. i cant remember.

 in the end, its kinda ironic that drake ended up more or less being our system historian, system explainer – only to get his writings studied to death by a betrayer to the point that oh god when it was decided to take us down, he had just handed our attackers every damn thing about us they needed and way way more ammo to kill a herd of elephants.

we’re still st anding tho. barely and for how long – or how long we’ll remember anything or anybody – i donno – but by god we’re still standing. TC’s a tough little bitch (k and bastard for the guys i guess).

but all the trauma around the online attack that only court could stop did shove us in to end-stage, and now organs are tryng to shut down again that’s shut down before on us and almost killed us. and we have a DNI we aint backing off of and our disease has entered our brain now too – oh the joy not – so who knows how long we have to live or how long we have to even remember anybody or anything? either way dayum. just dayum

 *

 but life Jeff Hardy has fought his entire life all odds just to live his life and achieve something, since the day Drake busted out into this RL, all he too has ever said is he wanted just, as he puts it, droplets of a life to get to live his way – just a piece.

he’s never been delusional. he’snever tried to take over the body – and there’s been times he coulda took just his own bads with him and took over.

actually ironically his system is why we’re still alive today. its almost all them for a long time now. but they’re the renegades – they all like him – none of them never considered dark enough. and i aint scared of most of them no more. a few i still kinda am and avoid cause well all them is um different.

all them. Drake included. gypsy, cody, cam, ,eve – they aint like us. they’re different for sure. but is different necessarily worse? aint being different also part of being HUMAN?

*

 i’m gonna go to his books of his writings and find his droplets of a life and reprint it. sometimes my dad Drake can be well sometimes he astounds me. this person i feared so much at first i’ve grown to adore and love and admire.

and it is NOT his fault we’re dying even tho you’ll never ever convince him of it!!!! He manned up and told john everything – every thing – exactly that entailed I donno cause they keep things from me so i can defend and its part of how i do it (by being in the dark about most inside stuff). but i know John told him he just acted like any 16 year old boy woulda and he wasnt an adult in the situation, and terminally ill to boot, so he don’t blame him for whatever. but still he does blame himself

and cause of that overwhelming self blame Drake has, for a while now, I’v e seen a desperation in him, a determination (he puts it as being on a mission), to be heard. he desperately is trying to be heard and make a difference somewheere to somebody anybody before he dies.

he says so he feels his life meant something and also i think its cause its the only way he can deal with the guilt he feels over his absolute conviction that he killed us by refusing to give up on lvoed ones until they flat pushed us over the cliff into the death-zone of our disease is to try to make up for it somehow by hopefully helping or encouraging somebody else.

*

 I’m so proud of Drake. this guy who busted out here years ago and immediately gravitated to other “bads/darks”, and raised all kinds of hell for a long time, and scared the shit outta me and was well ok he was a dick a lot for a quite a while.

 but he started changing years ago when he realized himself that this whole i can’t say the word but its that thing that happened when we was a kid that almost got me and him both sacrificed and his father, our only what many systems call dark lord but we only had one so he was the dark ruler. but that terrifying damien who came here when we was 3 from somehwere with a few others as adults and been here since and oh they’re bad, and drake somehow ended up being the prince of the pit even tho he aaint the oldest son.

 but anyway after he finally figured out mostly anyways what that s_____ time was about, he knew – least I’m convinced he knows, he’s some key obviously. he’s a key to something or his own father the dark ruler who invaded our system when our body was 3 wouldnt a been repeatedly trying to destroy him his entire life.

 see my dad Drake is used to been being tried to be destroyed and ostracized and punished and trapped. his whole life inside and out’s been like that. and its so sad cause what i started realizing after a few years as he slowly metamorphsed into what he became that, like our beloved Jess/Hom, Drake is a remarkable person. andi wish he’d a got his little part of a life.

now its too late. it’ll never happen cause we confined to bed probly 85-90% of the time sincve the lymphadenitis and one piggy back horrible infection after another this last winter/spring, and jess and somebody here counted the other day a nd we was given i think i remember straight – like 5-6 rounds of superantibiotics just to save/prolong our life!!!!!!!!

well like our ___________ the specialty nurse said and our home nurse too, even a round or two of them superantibitics can kill a healthy person from killing off the good bacteria in the colon if it cant be gotten to grow again.

 that poltergeist kidwas only about 12 and died from it and some movie star a year or two did too – from the good bacteria in the colon destroyed.

 they say its a horrific death but sharon told them again like a few weeks ago when colostomy bag was brought up again to prolong our life no. no we ainty putting out family thru that. if it comes to that, we die when God says we die and how. but to die cause your colon has poisoned you to death? ewwwww

anyways they’re desperately trying t o get n ew bacteria to grow. and its a uphill battle cause we already have a severely damaged colon which has actually been in total shut-down on us before.

spasstic colon (now called IBS) was our 1st dx like in our 20’s or right at 30 or something. then we had that before this situation near death in 97-98 when we ended up having 3-organ shutdown at that famous baylor hospital where our kids found one of only like 6 docs in the country who knew anything about our disease. anyway since then when our colon, kidneys and stomach shut down we we wasnt even supposed to survive that but wee did. b ut now 10 years later looks like we gonna die from our 1st dx – colon disease now making us toxic again. and that just pisses me off and its so ewww

*

anyways so i totally strayed way off. i just gotta say i dont blame my dad Drake for our death we’re facing. nobody here does. john don’t. jess don’t. home nurse don’t. and i don’t. i do really REALLY hope we die quick and easy in the end and that we die before we forget our loved ones completely.

but I love my dad Drake for long time now and we was gonna die from this shit eventuially anyways. it just hurts my heart so bad to see him blame himself and when he breaks down and cries and gets hysterical and sobs sobs now since this the cure from all that winter/spring shit might be what kills us, he cries like i aint never heard nobody nbut sharon sob that hard after she started crying her 1st tears, screaming to god begging forgiveness of Him and our forgiveness and family forgiveness for “killing us” and begging god to just kill him cause he did it – he’s the one that brought us to this – he’s the one that wouldnt give up and quit against all odds – he’s the one deserves to die. that’s what he cries and begs god for. kill him, save us… so totally the Drake he became years ago.

 oh my daddy, Drake, you aint killed us. You did accomplish somf of what you wanted and needed to bad even tho i don’t think you’ll ever understand or get it –

you gave us all here, all us teens throwed to the front after the 97-98 near-death in those few years after one at a time –

YOU Drake YOU gave us a chance to each taste a little bit of life – RL – REAL LIFE. maybe in the sharing of it, you shared so much you dont realize that you cost yourself your share mostly. but you didnt kill us daddy. please stop believing you did. we still alive cause of you.

the kids and babies and john and jess/hom and pets still got us cause of you

 *

Drake’sdonly 16 and never fronted. even came kknowing we was termionally ill from day one and that we wasnt gonna live forever. He like that song just wanted to live while he was alive.

being 16 and having that burden – and the burden of a whole system – and the burden of spouse, kids, grands, just everybody around you being on your shoulders…

i dont care what nobody else says, i say you did good Drake. you got nothing to be ashamed of. you’ve made so many who’ve seen you evolve proud – especially since you took on what you call your mission to try to leave a positive legacy to somebody to make their life count and not waste it and also not to allow themself to be terrorized by online attackers cause there are ways to fight back thru the system.

you’ve made us proud here. for what its worth.

and oh god but the babies adore you “mister”. and the dogs adore you. and i know jess and john is proud of you. and I know Jess adores you. and i think john’s actually come to love you in a guy/guy kinda way. you really dont know what you mean to some people do you? you been too damaged.

 the truth is tho Drake your the strongest person i ever knew. and i admire you.

and now i can look back and especially watching this vid which jess has watched over and over too, and we both see you, even your stances and expressions in Jeff, i can watch this and say oh wow Drake, you was a force to be reckoned with. and i’m finally ready to say i’m proud to be your daughter.

*

 I got a request of people that knowed Drake maybe from the 1st when he was well he scared me to death and later. but i got a request.

 he’s asked repeatedly for forgiveness. please.

i know like nobody never listens to me. never. but i’m asking somebody/ies please come forward and just write him a note or comment and forgive him before we die or totally lose our memory.

i aint never seen nobody try so hard to turn around – and he has turned arouand. he aint that person he was the 1st few years. hasnt been for a long time. and he aint that person them online attackers annihilated and left destroyed. he’s good and kind and he still got his funny moments

 and omg but nobody nobody on this planet got a better laugh that Drake. Cody comes close i think. but everybody who’s ever known him 3D says that. cause DRake’s laugh comes from the soul. and when his tortured soul manages to really laugh, its infectious and it oh the words has left me. i guess that means my brains done all it can.

 i just beg again real quick expecting to be ignored like always. b ut i aint begging for me. for him.

he’s asked publically so many times to be forgiven. please forgive him before he dies or we forget everything and everyone. please.

please dont make him die feeling unforgiven.

its been years since the last even close to “bad” thing anybody could say Drake’s done. and people CAN change. so please please dont make him go out  unforgiven.

those that set out to by their own words to see our death, you won. we’re dying. can you take your win and find it somewhere in your heart to oh whatever. people’;ll do what they want. i never make a difference. i’m just the defender who can hold the front in disasters.

I am encouraged tho and so thrilled to see that one of his kids has done what he believes (and I do to) and managed to contact him just to tell him she still l.oves and remembers him and remembered his lessons to her to teach her to look to the stars to feel close to him.

oh baby, Aunt Amy loves you too. thank you thank you

God please don’t let never mind. i forgot. my brains stopping working. i’m gonna end with this quote at the end of that vid on this entry…

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 ”Those who dream by nite inthe dusty recesses of their minds wake to find it was all in vanity. But the dreamers of the day are the dangerous men for they may act their dream with eyes open to make it possible.”  …T.E. Lawrence

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 that’s my closing. i’m done and i hope i can re-read this and stop obsessing and figure it out and be done with it but i’m putting the quote above thats on the end of that video is also is soooooooooooo Drake that its gotta go here…

 dont give up daddy. dont leave me alone with these that i was afraid of to die without you cause i’m scared. dyings hard. k i’m done

just me amy