Dear God, Where THE HEALTH are You???

All across Facebook and the internet people have been spewing their opinions since the recent ruling by the Supreme Court in favor of Obamacare.

I've read SO MUCH of it now that it sounds like a disturbed wasps' nest where everyone is getting stung and screaming and yet it goes on and on...

However, this blog I am writing is not to the general masses buzzing in circles, but to my brothers and sisters in Christ, some who refer to themselves as Christian Conservatives, and who have voiced their disapproval of Universal Health Care.


I'm writing you, my dear fellow believers, because I would like to ask you one important question: why haven't we, The Church in America, proposed a non-government-involved-solution to our country's ever declining health care crisis??? Because I haven't heard a thing. Not one idea at all, except to vote against Obamacare?

Now, if we Christians truly claim to be The Body of Christ present on this earth just as the Bible says we are (Romans 12:5, 1 Cor. 12:27) and as Christ's Body we are instructed by Jesus in the gospel of Matthew to be the light of the world, the salt of the earth, and most importantly: to LOVE (and all that the word love implies) to love one another, our neighbors as ourselves, and even our most despised enemies, then I ask you, WHY IN THE WORLD aren't we taking care of the sick in our country who cannot afford healthcare, let alone see a doctor or pay for a simple prescription???

I'm going to tell you about a friend of mine, she's in her late 30's, and for 15 years she has suffered from a debilitating, chronic disorder that is not recognized by Disability. She has no family, both her parents are dead, she gets by on the meager income her boyfriend makes. She is unable to travel due to her disorder, and she lives in a small town with incompetent doctors who have not been able to help her. About a month ago, her Medicaid ran out --not that it helped her much since her doctors were idiots! She is, needless to say, extremely depressed, and alone.

In the past five months, my friend has tried to commit suicide three times. Now this is a caucasion woman, (I mention her ethnicity because, unfortunately, many people, including Christians, think the lack of healthcare in our country is not a problem among white people) she has a college degree, had a promising career and even traveled the world...until this disorder suddenly came into her life, and she has since been homebound --suffering every day for the past 15 years!!!

My friend is also a Christian...and the most help she has received from local believers is advice that she "should just pray" and that they are "praying for her." Prayer, of course, is needed, but her
needs go beyond spiritual...she needs medical help for her physical body.

I could tell you about a dozen more stories, including that of my own (I have no health insurance and a variety of chronic disorders) as well of friends I know, whose stories are similar except that their physical disabilities range from Multiple Sclerosis (which, by the way, is nearly impossible to get Disability benefits for) to women with critical pregnancies who have been unable to get Medicaid, pay for doctors, and who have been turned down by specialists because they have NO medical insurance! The worst sin, however, is that these same friends of mine across the United States have received little-to-no help, financially speaking, from the churches they have faithfully been a part of for years.

Now, I know some of you may be thinking, well, there is that organization called 
Christian Healthcare Ministries that helps Christians pay their medical bills. Sure, that's great, but let's repeat that last line again: they help Christians. Maybe this organization should change their name to The Bad Samaritan Healthcare Ministries, because they step right over the traveler who was robbed, stripped, beaten and left on the side of the road to die. 

Why do I say this? Because in order for this oh-so-loving Christian organization to help you, you have to meet their requirements, the first being, like I said: you have to be a Christian! You also have to be an active member of a church (that is, unless you're bedridden), you must live by biblical principles (whatever that means), and you cannot be a tobacco user --though a little wine here and there is fine. No joking. So, if you're a struggling Christian, or one of the lowly scum of the earth, like a smoker, a prostitute, druggie, a more-than-an-alcoholic-drink-here-and-there person, or God forbid -a non-Christian (!) well, sorry, you're shit out of luck, because this ministry is for good, little Christians only!

So, excluding all the exemplary Christians who are able to receive medical aid from exclusive ministries as the one mentioned above, what the HEALTH do we do, as The Body of Christ -in America- to minister to our neighbors, believers or not, who are sick and suffering and cannot afford health care?

Well, dear family in Christ, I have something radical to propose! Something that will not only show America, but also the world that Jesus Christ is present on the earth and cares for the health needs of every individual!

Here is what we must do:

Step one: CLOSE DOWN and SELL every church building across the United States! Stop putting our money towards the cost of church buildings, utilities, land, staff, and pastors. Also shut down every televangelist, Christian television and radio program, and stop the presses on all those millions of Christian magazines and for the love of God, stop making awful Christian contemporay music! (We'll keep Christian books going, though. Books are good.) Maybe we should shut down some Christian colleges as well. LOTS of money (if not lots of wasted money) found in all of the above!!!

Step two: Hold church groups in our homes and collect the money we earned from the sales of our church buildings, as well as the money we would have given to the various "stuff" above, and collect it for the sick and needy.

Step 3: Get to really know every person in your home church and every person on your street and/or neighborhood --become a tight-knit community! Find out who the sick and needy are among you, and help them in every way, especially with medical finances!!!

Yep!! That's it!! Do the above and the health care crisis in our country will be solved!!! Hooray! 

Okay now, I'm not an idiot (though some might think otherwise), and I am quite aware that something this radical will not happen in our country for a variety of reasons: some sensible, some atrocious. But I didn't write this blog for you to come back at me with explanations for why my radical (or silly) idea won't work, or why we cannot die to ourselves and christian traditions that drastically. I mean, who do I think we all are, GOD??? 

The reason I wrote this is because I want us to THINK. I want my christian family in the United States of America to really take into consideration that WE ARE THE KINGDOM OF GOD, and stop blaming the government for all of our country's problems, and DO SOMETHING --come up with a great and radical health plan that can assist every person in our country! DO SOMETHING RADICAL! DO SOMETHING MORE THAN JUST PRAY FOR THE SICK AND THE POOR!

My very special hope is that when we do pray to Father about our country's health care crisis, that we will actually take the time to LISTEN to what HE has to say about it. Ask Him what He wants us --His manifested Body on Earth-- to do, to prove He is the God of love and compassion, who heals the sick, proclaims good news, who sets the captive free! What does He want us to do to reveal that He is the Almighty God we have claimed Him to be???

Now is the time. If we don't at least try to do something (more than cast a vote, or even pray), and the government provides Universal Healthcare, well, we will certainly have no right to complain.

FOR THE LOVE OF GOD, PLEASE NOTE: any attempt to post comments/responses in way of unsolicited advice, criticism, analysis, words-of-wisdom or correction, or worse-case-scenario: berating and condemning me for my expressed opinions, thoughts or emotions on this blog, on Facebook, or via e-mail are not welcome! THE ABOVE LIST OF RESPONSES ARE TERMED "INVALIDATION". LOOK IT UP. IT'S A FORM OF PSYCHOLOGICAL ABUSE AND I WILL NOT TOLERATE IT. only positive comments or messages with uplifting, encouraging content, such as, "thank you for sharing" or "i will be praying" are welcome, as well as the ever-so-confirming "like" button on FB. thank you for being gracious. much love ~Heather

gratitude

i'm not out the clear. i'm still having symptoms. i'm still having a hard time getting out of bed before 4 --or sometimes even 5pm-- because i just want to sleep and not have to deal with reality: the symptoms and anxiety and depression.

but some things have shifted, and i am fully aware that it is God's doing. for one, i have experienced Him reaching out to me through believers and non-believers alike: so many friends and family have been writing and calling me --old friends from my childhood, old friends from Florida, and my dear friends and family across the US, here in Columbia, and even all the way from South Africa! prayers and love and encouragement have been been showered upon me. Jeremy's cousins even spent time fasting and praying for me. how incredible is that?

the shift may not be radical, but it's a few steps away from the darkness and closer towards His light. i noticed it a few weeks ago, a hope was planted within my heart that was beyond myself. then, just within the past week, i found myself backed into a corner with two choices before me: to continue on the path of despair which leads to my destruction, or to give God a chance to help me.

i chose the latter. however, i quickly realized it is not a one time choice, but a moment-by-moment choice, because the temptation to despair is still ever present, and the knowledge that i have a long road ahead of me towards better spiritual, mental and physical improvement can be overwhelming. plus, the reality that i may never be free from PGAD is a hard truth i have had to face. so during these moments of feeling overwhelmed, i am now trying to turn to Him and ask Him for peace and to be in control --that even in my physical distress, He will be with me. i am weak, ever so weak, and i realize i cannot "go in through the narrow gate" without Him carrying me through. thus far, He has been answering my prayers.

and i did have two days...well, more like one and a half of no PGAD or other pain. it was a nice break, and i am grateful for it. i pray there will be more days like that ahead.

so i am asking that if you've been praying for me, please continue. i could not have gotten this far without the prayers and love of others, and i realize i cannot continue on this path of hope without them. and i pray, from the bottom of my heart, that God will bless all of you who have been praying for me. i am grateful, ever so grateful that tears are in my eyes for those of you who have been interceding for me, and for showing me His love and truth --for being His body. i would be a fool to say that He does not love me, or that He has abandoned me, for you have proven this untrue.

thank you. so much.

-------------

what to do? i wish i knew.

i may be posting this prematurely, as i just had my Ganglion Nerve Block done, at this writing, let's see...17 hours ago, but for continued "document" sake of this journey, i am copying and pasting from 1) my FB statuses written 14 hours ago, and then 5 hours ago, along with a link i provided at the end of some wonderful, loving responses from my friends, 2) a message i wrote to friend just a bit ago and 3) a song that sums up how i feel at the moment about this disorder, the pain, and the emotional toll this is taking on me and my family, and how i wish things were not as they were, and that i knew what to do...if anyone knew, really, what the hell is causing this disorder and what can be done to resolve it, once and for all.

14 hours ago:
"procedure went well, so the doctor says. it took a while, he had to go thru inner scar tissue by my tailbone. i am in pain at the sight of entry...it's all swollen and can't get comfortable.still pretty sedated and am going to sleep now. thanks for prayers and well-wishes."

5 hours ago:
"i went to bed right after my last post, got up after 3 hours with an intense f'ing headache, so dizzy that walking from my bed to the bathroom was like walking on a ship on the heavy seas, and went back to bed. Now i am wide awake at 12:30am, my head KILLING ME so much that i'm nauseous. everyone is asleep, i am alone, and to my GREAT DISMAY, my PGAD has flared up WORSE than it was BEFORE the nerve block. oh God. i'm trying not to freak-out, maybe, maybe God will be kind and i will be better tomorrow. but dammit, just fucking dammit..."

1 hour ago:
"thank you all for your responses. i so appreciate them. i did find this site about WHAT TO EXPECT after having a ganglion impar block --why my DOCTOR didn't give me this info, i can't say? he had a busy day, i guess.

anyway, it's given me a ...glimmer of hope, but beyond that, i'm just surrendering it to God all-over-again.

this is what the site said:

What is a ganglion impar block?

A ganglion impar block is a procedure used to reduce some of the symptoms of chronic pelvic or rectal pain by blocking nerve impulses. The ganglion impar is a structure located at the level of the coccyx. The nerve block can be diagnostic or therapeutic. One of three things will happen:

1.The pain does not go away, which means that it is probably not coming from the nerves at the site of the injection. This is of diagnostic value.

2.The pain goes away and stays away for a few hours, but then returns. In this case, the block is also of diagnostic value, as it means the pain is probably coming from the nerves at the level of the injection, but the steroid was of no benefit.

3.The pain goes away after the block but returns later that day and then improves over the next few days. This means that the block was of therapeutic value, as both the anesthetic agent and the steroid had an effect on the pain.If you experience some benefit from the injection, it may be repeated."

site: http://www.lahey.org/Departments_and_Locations/Departments/Pain_Management_Center/Nerve_Blocks/Ganglion_Impar_Block.aspx


this afternoon, when i went to bed after the procedure, and only got up once for Jeremy to get me a cold pack for my back and head, my dreams were about doing battle with demons...and not demons like gargoyles, but all kinds, from beautiful seducing demons, people possessed with demons, ghost-like demons...most very Tim Burton-esque.

but every time i encountered one, i told them that they had to go, that in Jesus Name they could have no power over me...but as the words came out, i felt my faith inside me falter...did i REALLY believe that Christ was more powerful than these demons.?

i don't know what happened to the demons, because with each demon i encountered and confronted, one after the other, i didn't know whether they had been rebuked and "gone to the pit" as i commanded them to do, it was like "commercial break" and the next scene i was confronting another, and the last, before i awoke, was a whole house-hold full of various demons, and that's when i awoke to my symptoms being worse.

i've gone to a variety of healing services over the 17 years of having this, but more so in the first 5 years when it was chronic, as it has been for the past 6 months. some services were quiet and intimate with a very strong presence of God, and others --more than i'd like to say, by a variety of charismatic people from Texas to Florida-- involved "deliverance" ministries, where they tried to cast out from me every demon they could name. obviously, nothing changed.

i do believe in the healing of God, and here's a quick story about my own account of being healed by Him: about 3 months before i met Jeremy, i started suffering from sever upper stomach pain --i would drink an entire bottle of Maalox and still be bent over in agony.

one of Jeremy's and my first dates was to the ER for this! we got married, and on our wedding night, i had the sever stomach pain...talk about a bummer of a night. finally i was sent to a specialist who put the long cord with a camera down my throat, and found i had a very slight hernia, but the doctor didn't think it should be causing my problem.

so, on our way to the TN mountains for our honey moon, we visited Jeremy's family in Alabama, and i had the stomach pain after lunch, went into bed and began crying and begging God to help me. suddenly i felt his presence, and actually said a loud, "Oh, hi. You're here, Lord." the door opened and in came Jeremy with his Uncle. His Uncle laid hands on me, prayed gently for my healing, and even to my own amazement, i felt the pain drift away. since that day, i never had those stomach pains. sure, i get indigestion sometimes, but a Maalox tab takes it away now.

of course, a few weeks after my stomach being healed, i was pregnant, and 3 months later i got PGAD.

i almost wish i had the stomach pain over this, or some other kind of pain. PGAD is just such a humiliating disorder, and it's still so"new" to the medical field, that there are little doctors know about it, or how to treat it --but that seems to go for most chronic kinds of pain, as i have been finding out.

hell, give me migraines i can take codeine for, or let my pain be something fatal, like cancer (which i hate to write and don't want to offend anyone by doing so) but if it were fatal, i'd at least know that 1) doctors would take my pain more seriously and 2) i'd know there was an end in sight for my suffering.


song, "I wish I knew" by Sharon Van Etten


~~Lyrics~~
I wish I knew what to do with you,
But the truth is I ain't got a clue,
Do you? Do You?
I wish I had an idea of what I need,
But we, oh we, can't know and that's okay,
That's okay.
I wish you'd understand, I wish that I could know,
The truth is I have no idea.
I wish we could just run around
And only worry about right now,
I hate to admit it but I don't know shit
And neither do you, do you, do you,
And that is good enough
For me, for you, for now,
As long as we can talk about it.


FOR THE LOVE OF GOD, PLEASE NOTE: any attempt to post comments/responses in way of unsolicited advice, criticism, analysis, words-of-wisdom, and/or correcting of my expressed opinions, thoughts or emotions on this blog, or worse-case-scenario: berating and condemning me, on Facebook, or via e-mail are not welcome! THE ABOVE LIST OF RESPONSES ARE TERMED "INVALIDATION". LOOK IT UP. IT'S A FORM OF PSYCHOLOGICAL ABUSE AND I WILL NOT TOLERATE IT. only positive comments or messages with uplifting, encouraging content, such as, "thank you for sharing" or "i will be praying" are welcome, as well as the ever-so-confirming "like" button on FB. thank you for being gracious. much love ~Heather

AS SEEN ON TV!!!

I am always surprised to find out who has or has not seen the television interviews I have been in, or read the various on-line articles that my fellow PGAD friends and I have been in.

For instance, I recently tried to get in touch with my old OB/GYN doctor, but could only get a hold of her OB/GYN partner, who told me that neither one has seen me, or any other program on tv about PSAS/PGAD.

Same goes with the Women's Health center I recently visited, where the gynecologist told me she has never seen or read anything about PGAD, and said to me, "You probably know more about it than I do."

But the nurse practitioner out in the country has seen me on television several times, but the Pain doctor I am currently seeing has never seen any or read any of the articles.

My goal in doing the interviews and articles was to not only reach out to women, who, like me, thought they were the only woman in the world suffering from this tormenting disorder, but also to make the medical community more aware of it and to research it further. The latter is not quite there yet, but they have at least now "heard" of PGAD.

In case you have yet to see or read them, I am posting some of them below. PLEASE feel free to fwd them to your friends, esp anyone you know of in the medical profession. I wish I had access to the entire 2nd episode of 20/20, but cannot find it on their site, just the preview, which is good, but the entire show was very informative.

Please note that both the 20/20 videos begin w/ showing a scene from Grey's Anatomy with a female patient who has spontaneous orgasms. This is NOT the case with the majority of PGAD sufferers. It's very rare, in fact.

So anyway, here are a few links I'd appreciate you seeing and reading, and at the bottom is the Amazon link to the book that both Jeremy and I are in, which contains the info from the 2nd 20/20 interview.

First 20/20: http://www.psas.nl/en/movie.asp
(at this website link above there are more news videos of other women with PGAD you should also watch.)

Second 20/20:



in case video doesn't appear here's the link: http://abcnews.go.com/video/playerIndex?id=4332081


Fox News Article:















Never Satisfied: The Curse of Persistent Sexual Arousal SyndromeWritten By Jessica Ryen Doyle
Published April 23, 2008
FoxNews.com


MSNBC article:



MSNBC: Always aroused: A good thing gone awry















And finally, the book. we're in chapter two:


















http://www.amazon.com/Medical-Mysteries-Bizarre-Baffled-Doctors/dp/B002U0KOTA/ref=lh_ni_t

My second nerve block is tomorrow. Will let you know how it goes in a few days. Last nerve block it was sore at the sight of injection and coming off the anesthesia gave an awful headache that lasted about 3 days. Keep your fingers crossed and your prayers coming!

some current peace, and an upcoming procedure.

since my last entry, something has changed, something within me.

i cannot single out what one thing might have made the positive shift, but i believe it is a combination of 1) all of those who have been praying for me and reaching out to me (thank you, sincerely, so very much) 2) a phone call Jeremy received from a friend who explained how Topamox had seriously effected one of their family members, making them suicidal --so Jeremy told the Pain Doctor he wanted me off of it ASAP because he became aware of the drastic from bad-to-worse change in me since i had started taking it, 3) my son sitting me down to ask me why i was doing so bad, and being so mature and compassionate upon hearing the truth, that he spent the next few hours with me, "to keep you company, and help get your mind off your pain, because i love you," and lastly, 4) a friend boldly, but lovingly, telling me in so many words, to allow God to give me the strength to fight and not let evil win this battle.

i cannot promise if this positive shift will last, but for this moment, i am enjoying the peace that surpasses understanding --even in midst of physical pain.

one frustrating situation that happened since my last entry, however, was trying to get in touch with my nurse-practitioner (NP), who ordered my pelvic MRI back in Sept of last year. i sent her several e-mails, which her assistant nurse responded to, not her. i cannot even tell you how ignorant the nurses replies were without my head exploding!

so after 3 days of correspondence w/ dim-witted nurse, i wrote one final e-mail which read:

I need you to please print and show the following letter and file to Mrs " ____" and tell her I need to speak with her directly, today.

Dear Mrs. "____",

I am writing you because I am requesting that you please help me to get the Radiology Department of Lexington Medical Center do another pelvic MRI at no cost since they obviously disregarded my broken and/or malformed tailbone in their previous two MRI's and readings, [they did 2 because the radiologist called me, admittedly saying they messed up their initial MRI] which my husband and I, having no insurance, had to pay over $3,000 for out-of-pocket. The caudal block, btw, has not proved to be effective and I am still in chronic back pain and my PGAD is worse than ever. Attached is a file w/ a list of information which should help our case.

Thank you so much, Heather Dearmon

i then attached a list of reasons why i needed another pelvic MRI, including my Pain Dr's finding my broken and severely bent tail-bone, along with several e-mails i received from the Doctor/Professor at Rutgers University (who has a very long title, including Adjunct Professor of Radiology) who i sent the pelvic MRI images to, and how he explained that the pelvic MRI's were inconclusive, taken from the wrong angles, and did NOT include my TAIL BONE!

Well by 4:30pm, my NP had not called me back, so i called her and left a message asking that she please call me before she left work, but she didn't call. she e-mailed me instead, basically shrugging me off, saying:

Heather, I am unable to write anything about the MRI since I don't actually have anything to do with the interpretation of it nor did I find the recent issues. I would suggest contacting the doctor who found the malformation and see what they can do. Thanks!

so i replied:

Dear Mrs "____"

i am seeing my Pain Doctor tomorrow, the one who found the malformation, but i'm not sure he can help me since you were the one who ordered the MRI, not him. i was hoping you could at least make a phone call for me to the Lex Radiologist with the info i gave you to see what they could do. but i understand. it's very hard for me, i am in chronic pain, and i feel alone and w/out an advocate to help me. but i won't bother you any more about this.

i will ask, however, if you would please at least call in my Birth Control to Wal-mart, which i requested a re-fill for 3 days ago, and has yet to be re-filled. By the way, your nurse asked if I knew the generic name for my birth control??? i thought i was the patient, and finding the generic name would be your nurse's job? i looked all over the my empty pack and even searched on-line, but couldn't find anything. The RX for is still on Wal-mart's Pharmacy file, so i would think re-newing it wouldn't be so hard?

sincerely,
Heather Dearmon

Wal-Mart's automated phone service called me 20 minutes later informing me my birth control RX had been filled.

thanks a whole lot. needless to say, i won't be going back to her anymore.

the following afternoon, Thursday, Jeremy took me once again to the Pain Doctor, so we could inform him that the caudal block he preformed 9 days before did not make any difference in my pain or PGAD. i also told him about the e-mail exchanges and problem i had with my NP in trying to get her to help me get another pelvic MRI. he seemed shocked at her response, and said it was a shame. i then showed him the e-mails from the Doctor at Rutgers, and he said he would also be willing to write a letter if needed, confirming my broken tail bone, if it could help me to get the Lex Radiologists to do another pelvic MRI, at no cost.

He then explained that my broken or deformed tail-bone is not like a normal tail-bone, which should curve under, but mine shoots off --like it was broken and bent at a severe angle to the left. this may have messed up the nerves in my pelvis, esp the ganglion impar nerves which are right below the tail-bone! so he scheduled me to have a GANGLION IMPAR BLOCK this coming tuesday, 3/20 .

the Ganglion Impar nerves is a cluster of nerves that receives pain signals from the tailbone, perineum, rectum, anus, urethra, and vagina.

A Ganglion impar block is a well-established treatment for chronic, neuropathic perineal pain from visceral and sympathetic pain syndromes. If you recall me mentioning before, the sympathetic and para/sympathetic are the nerves that control sexual function and orgasm.


I'm a little more nervous about this procedure than the last b/c the doctor said, "It's going to be a little tricky considering your broken tailbone." He explained how he actually won't be going through my spinal cord, but will come in from the side, to get to the ganglion nerves. i saw on-line how some doctors use these strange square-shaped needles. so please pray for me, that i will have peace and strength during the procedure, that God will guide his hands, and that the medicine he injects will work this time.

If you're interested, the link below explains in simple terms the function of the ganglion impar nerves, and how having a nerve block there might be able to help me:

http://www.drblee.com/2012/01/ganglion-impar-block/

please note: any attempt to post comments/responses in way of unsolicited advice, criticism, analysis, words-of-wisdom, and/or correcting of my expressed opinions, thoughts or emotions on this blog, or worse-case-scenario: berating and condemning me, on Facebook, or via e-mail are not welcome and will be deleted before read. only positive comments or messages with uplifting, encouraging content, such as, "thank you for sharing" or "i will be praying" are welcome, as well as the ever-so-confirming "like" button on FB. thank you for being gracious. much love ~Heather

the lost, lonely and frustrating search for competent doctors

i wish i could make a documentary to record the frustrating process i am going through in order to find and get help for my chronic suffering.

i need a small camera crew to follow me around as i scour the web, call different doctors' offices, talk to their answering machines or get the run around from their staff, go to expensive appointments and listen to what the doctors say (and don't say), listen as i read aloud the e-mails i send to my fellow suffering friends, maybe hear some of their accounts, just so the public could get an idea of how very difficult it is to find a doctor to help someone with my condition, Persistent Genital Arousal Disorder (PGAD), or just to find a doctor to help with ANY kind of chronic pain.

My dad had Small Fiber Neuropathy (SFN). 60% of SFN is associated with systemic conditions, such as diabetes, HIV, and vasculitis. The other 40%, such as the SFN my father had is idiopathic.

the definition of Idiopathic is: Of unknown cause, used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

PGAD is far more rare than SFN, but it is also idiopathic.

Small fiber neuropathy affects an estimated 15-20 million Americans. Sufferers experience pain and burning sensations in their toes, feet, legs and hands. It could best be described as damage happening to the nerve endings of your skin's outer layers.

if you google SFN, you will find out there is no known cure. doctors prescribe anti-depressants,
anti-convulsants, lidocaine patches, and TENS UNITS. sound familiar? if you scroll down a few blog entries, you will see that i have been prescribed the same things for my PGAD.

if you visit a SFN on-line support group, you will see the ages range from people in their 20's to their 70's, and if you read their stories of how they suffer, how they cannot find competent doctors, medications that help, or doctors who give a damn, you would find their words are hauntingly similar to the ones posted by women in the PGAD on-line support groups i am in.

for months my father had seen many doctors in Atlanta, Ga who could not properly diagnose his pain. he eventually saw a pain doctor who was an arrogant son-of-bitch, which i can call him having spoke to the bastard myself. my dad and my family soon became very frustrated at the lack of help he was being given in Atlanta, so we decided to go to the Mayo Clinic, famous for their teams of competent physicians. i cannot recall just how many doctors he saw, but he saw a range, at least 5, from a neurologist to a psychiatrist, and other specialists, and only one out of those 5 properly diagnosed him. but you know how the story goes...by then it was too late.

if my father had not taken his life, he'd have had years similar to mine, with various doctors writing various medications --and he didn't tolerate medications well. all the ones he had been prescribed for the 3 months of his suffering, he had adverse reactions to.

it's been 7 days since my caudal block, and it is safe to now say it did not work. at all. my PGAD is the same as it was before. so today i will be making phone calls, trying to get through to my pain physician, trying to get through to my general practitioner to see if the idiots who messed up my 2 pelvic MRI's (and somehow missed my broken/deformed tailbone) will do another MRI at no cost, since it cost us more than we could afford in the first place. it's very hard to actually get a hold of my doctors, i can call and even e-mail them, but their nurses call me back, and there is waiting for more return calls or e-mails, and refills, and don't even get me started on the hell that is the Wal-Mart pharmacy!

a dear, old friend of mine recently sent me what she called a "now-famous article" (i'm assuming in the medical community) called, If You Have To Prove You Are Ill, You Can't Get Better: The Object Lesson of Fibromyalgia by Nortin Hadler, written in 1996, and it only further proved my point that the medical field, especially physicians, are still lacking in the two vital things most needed by their patients: a listening ear, and then an aggressive plan of action to end their patient's pain.

we who are suffering feel lost. i...feel...lost!

here i am, already suffering, but must build up the energy to not only FIND a doctor who MIGHT be able to help, but then it's up to ME to MOTIVATE these doctors to help me!

this is wrong, people! so fucking wrong, and such a fucking shame.

art and poetry and music

this blog entry below does not desire any response, it is a simply a small collection of images and poetry i have found to be an expression of what is going on inside of me, and i am allowing you a glimpse, but not allowing anything more. it is not a giving up of hope, or a goodbye or anything for anyone to panic about. sometimes words and images and music can help us express our plight, and that is all this is.

Sirin and Alkonost – Birds of Joy and Sorrow, by Viktor Vasnetsov

i feel as though i am, now, like Sirin, the bird of sorrow on the left, and i was once, i think, like Alkonost, the bird of Joy on the right...and i miss being like her.

The Eye-Mote by Sylvia Plath

Blameless as daylight I stood looking
At a field of horses, necks bent, manes blown,
Tails streaming against the green
Backdrop of sycamores. Sun was striking
White chapel pinnacles over the roofs,
Holding the horses, the clouds, the leaves

Steadily rooted though they were all flowing
Away to the left like reeds in a sea
When the splinter flew in and stuck my eye,
Needling it dark. Then I was seeing
A melding of shapes in a hot rain:
Horses warped on the altering green,

Outlandish as double-humped camels or unicorns,
Grazing at the margins of a bad monochrome,
Beasts of oasis, a better time.
Abrading my lid, the small grain burns:
Red cinder around which I myself,
Horses, planets and spires revolve.

Neither tears nor the easing flush
Of eyebaths can unseat the speck:
It sticks, and it has stuck a week.
I wear the present itch for flesh,
Blind to what will be and what was.
I dream that I am Oedipus.

What I want back is what I was
Before the bed, before the knife,
Before the brooch-pin and the salve
Fixed me in this parenthesis;
Horses fluent in the wind,
A place, a time gone out of mind.
painting, Andromeda (1869), by Paul Gustave Doré

portion of poem, Andromeda Unfettered by Muriel Stuart

I am a thing of twilight. I am afraid.
Dull now and tame now; of myself so shamed.
Fortressed against redemption; visited
Of the old dream so seldom, as things tamed
forget the life that their wild brother leads.
I am a hurt beast flinching at the light.
I have been palaced from sun, and night
Runs in my blood, and all night's blushless deeds!

Eve, by Anna Lea Merritt

A DAUGHTER OF EVE
by Christina Rossetti (1830-1894)

A fool I was to sleep at noon,
And wake when night is chilly
Beneath the comfortless cold moon;
A fool to pluck my rose too soon,
A fool to snap my lily.

My garden-plot I have not kept;
Faded and all-forsaken,
I weep as I have never wept:
Oh it was summer when I slept,
It's winter now I waken.

Talk what you please of future spring
And sun-warm'd sweet to-morrow:--
Stripp'd bare of hope and everything,
No more to laugh, no more to sing,
I sit alone with sorrow.

OPHELIA: I hope all will be well. We must be patient; but I cannot choose but weep to think they would lay him i' th' cold ground. My brother shall know of it; and so I thank you for your good counsel. Come, my coach! Good night, ladies. Good night, sweet ladies. Good night, good night. (Hamlet, Act IV, Scene 5, line 2930)

A BETTER RESURRECTION
poem by: Christina Rossetti (1830-1894)

I HAVE no wit, no words, no tears;
My heart within me like a stone
Is numb'd too much for hopes or fears;
Look right, look left, I dwell alone;
I lift mine eyes, but dimm'd with grief
No everlasting hills I see;
My life is in the falling leaf:
O Jesus, quicken me.

My life is like a faded leaf,
My harvest dwindled to a husk:
Truly my life is void and brief
And tedious in the barren dusk;
My life is like a frozen thing,
No bud nor greenness can I see:
Yet rise it shall--the sap of Spring;
O Jesus, rise in me.

My life is like a broken bowl,
A broken bowl that cannot hold
One drop of water for my soul
Or cordial in the searching cold;
Cast in the fire the perish'd thing;
Melt and remould it, till it be
A royal cup for Him, my King:
O Jesus, drink of me.

The Descent of Christ by William Blake

from The Hollow Men by T.S. Eliot

Between the idea
And the reality
Between the motion
And the act
Falls the Shadow

For Thine is the Kingdom

Between the conception
And the creation
Between the emotion
And the response
Falls the Shadow

Life is very long

Between the desire
And the spasm
Between the potency
And the existence
Between the essence
And the descent
Falls the Shadow

For Thine is the Kingdom

For Thine is
Life is
For Thine is the

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

Florence and the Machine: Never Let Me Go

please note: any attempt to post comments/responses in way of unsolicited advice, analysis, words-of-wisdom, and/or correcting of my expressed opinions, thoughts or emotions on this blog, or worse-case-scenario: berating and condemning me, on Facebook, or via e-mail are not welcome and will be deleted before read. only positive comments or messages with uplifting, encouraging content, such as, "thank you for sharing" or "i will be praying" are welcome, as well as the ever-so-confirming "like" button on FB. thank you for being gracious. much love ~Heather