Damn, That Migraine Was an Ass Kickker...

Wanna know how I knew?

Even a friend, whoooo is always trying to "one-up" me on the "I'm so much sicker than you are" routine, called, and said, "Oh, you sound awful, get some rest and we'll talk some other time!!!  I am so sorry I bothered you!!!!"

Course Mom still came over--she knows no boundaries whatsoever, but I just realized that this woman recognized that I really never drew any with her; or any of my family.

But now with RSD and the ME, though I'm not sure if the former is "official" yet, I think that with them both coming to light...

The only use I would have for CBT is to learn better boundaries so I don't worsen a flare or bring on a "crash."

No Compassion for how SHE FEELS???????? Ahemmm, read on!!! And give me a break!!!

Man, this one is an ass-kicking migraine, and I hope that the the neurologist got to calling in the damned script so it can be delivered tonight.

What I hope like hell isn't delivered is a visit from my mother.  No, I am not sick because she is coming; I wasn't feeling too well before she announced she was coming.  But like the noise from the upstairs to me sounds like a heard of elephants!!!!!!!  Course put together, my upstairs neighbors weigh about as much as an enephant--uncharitable, I know, but when you're sleeping below them, you don't know what is going to come crashing through through the ceiling, or when, and what the fuck they were thinking putting them on the 3rd floor-probably costs them a couple tablets of nitroglycerin.

But no, when I am in a  "hypersensitive state," I can't stand to listen to them walk across the floor, it grates my fingernails on chalk....Hell, every sound, every noise, everything grates on my brain like fingernails on a chalkboard.  I know I need a ground floor unit for obvious reasons, and I hope to hell they don't put two baby elephants in training above me when I move in 9 months.

To wherever that happens to be.

But the earplugs my Mom got me-in terms of being able to be easy to put in; but Dave's shut out slightly more noise, but as it turns out, only by 4dbl.  I wish I could just shut her the hell out.  Blinding headache....puking-minimalized by Dr. B who is very forthcoming with refills of promethazine (phenergan)--it's about the only anti-puke medicine that works for me and ever has: all that fanccy shit--the Zofran, all that crap that's like $80/pill, it doesn't do crap.

The migraine sets in & I need to batten down the hatches--Get my Fiorionol refilled, promethezine (liquid form preffered), earplugs, sleep mask, barf bucket in case of emergency..phones OFF....drapes pulled...maybe something for anti-anxiety.  Do not disturb sign...(though kids in the building steal them--so do the adults, for that matter); oxygen..........check email later


....Every noise, every sound, it grates on my nerves like fingernails on a chalkboard....and in walks Mumsy dear?

She didn't give a shit how rotten I felt---fucking showed up anyhow, "I've got berries in the car, and they've defrosted."

What?  You can't put them in the freezer for another day?
Oh, and all up in my business for shit, she is.  It's ridiculous, but I croched a bag for the patches, to keep the un-used ones in, I guess now I have to make one for the fucking garbage, and the bottles of medicine will have to be stripped and taken out to the dumpster straight away....unless I find a hiding place.

Stupid?

Meet my parents!!!!

Why Must We Be So Ugly to Each other? Especially Family!!!!

I got this email from a family member:

"You are about as understanding as to what is going on in my life as a fence post…..yet I am always trying to help you and find a ways to help you….when do you give back as much as some compassion for me ?"

From my mother.

I know she is borderline--and I could post links....but what's the fucking point???  It doesn't change anything.  Not her, not her future behavior.  And I will bet you twenty and raise you fifty     that she calls me today and acts as if nothing ever happened-like the email for one.  Oh, I will save it.  Maybe someday she'll get some DBT or at least some counseling, and I will fucking ram it down her throat along with the DVD's of every visit of her each and every time she comes.  Here was my reply:

I apologize for (again) offending you--it is not intentional.

You tell me not to compare me to Lisa or Paul, when it comes to him (well, maybe not Paul anyhow);

I refuse to carry on a discussion of how you believe the chasm of difference between how I treat you versus Dad-this is my first (and last) request for you to stop drawing me into conversations about how you feel I treat Dad versus how I treat you.....

So, I am sorry I even told you about the discussion I was having with him, so let's just drop it. I refuse to discuss it any further from this point on. Any future emails will be deleted, and conversations will be dropped. It's betweem he and I anyhow.

I am so fucking sick and tired of her shit.  I am tired of her "I don't like how you treat me." 
For fuck's sake, you could treat her like the Queen of England, and she would bitch and moan that the caviar was not high grade enough.


I am fucking sick to death of it!!!!

Is this a pissing contest on who's sicker than who??? Are you SERIOUS??????

I have a friend, and she  seems to think for one, that this whole deal is a big pissing contest as to who is sicker than who (I'll remember that the next time I review my EOB's, and one month doesn't even fit onto a single fucking page, ya stupid bitch!!!!!  And is she on oxygen???????  But she signs her emails now, "I wish you a low pain, low stress, high energy day")  I say, "Go fuck yourself, bitch!!!"

I have idiopathic cardiomyopathy.  It's a systolic heart failure.  I don't have "high-energy days....."

And worst of all of having the low cardiac output--I have it while dealing with the high pain of RSD!!!

Pain increases the need for cardiac output.  That, you dumb old bat, is going to make me even more exhausted!!!!!!  Get a clue.  Stupid, stupid, stupid.

If there is one tthing that will drive me over the moon and irritate the shit out of me, it's the world of fucking STUPID!!!!

But I swear, every time I talk to her there's some kind of drama or another.  Her brother is being an asshole (what's new?  That relationship is like my relationship with my entire fucking family.  It would be like calling them for money and not expecting to get my head fucked!!!  Shit-she hasn't learned yet either, and she's been on this fucking planet a hell of a lot longer than me!!!!

But she has drama with her son.

Drama with her DIL.

Her grandchild-the DIL is in preterm labor--well for fuck's sake, if I had her for a MIL??? Hell yeahh!!!!!!!

Oh, the pain, Oh, I feel soooo horrible.  It's like Bee observed, she is letting what is physical about her illness take over....


.............................NEVER SAY DIE!!!!!!!!!!!!!!!!!!!!!!!!

Update--I am nervous as hell

Well, I hope that Dr. B will be on board with us to help from the medical aspect of things....because I can only get into Bridgeways for counseling and only with a open medical coupon, which I don't have, and Lisa said to ask for Case Management.  So that was a dead end.  But I have more medical problems than I do mental health.

She's also referring me to COPES to see if possibly we can do it on my current insurance situation.  I don't want to lose my current relationship with Dr. Lance--I don't want to just go in there and just not say anything, I can't be dishonest like that, it's not right....because his copay would be required to be billed to DSHS, and he doesn't do that.  It's frustrating, but I don't know what else  I'm supposed to do; I have to keep the current situation, and I am just in a rock and a hard place.  If Dr. Blade will prescribe my meds, and since I have a 90 day supply with refills, but the other meds--Idk if she will prescribe those, but I do not ever, ever, ever want to go back to Dr. Jones again.  I do the PT every day at home, I do the beginner yoga that I am able to, I can't use my friend's pool, and the YMCA is not an option because I can get the membership, but the problems is that I cannot get a ride there.

But it's a stressor for me, and we're sorta to the wire--we've got nine months, and I am freaked out.  I see Dr. B on the 7th, and I need to know that I can have her on board to make the referrals, and also the do the prescribing that Dr. L is doing because.  Lisa is going to come with me on the 7th, so ya know, I think that will be a good thing for her to explain that my housing will now rest on a medical need and Dr. B's cooperation is going to be essential (I'll wear my oxygen that day..oooohhh, so bad!!!!!  But shoot, I am gonna have to find some way to make it!!!!!)......and that Dr. B is quite possibly going to need to take up prescribing my pain meds.

But I want her to know I was not the "uncooperative" patient who kept asking for more meds--the nurse at least should attest that I wanted to try something different and now with the pain increased after the surgery--and I can't explain why, and then I had that stupid neurologist wanting to blame all my "neurogenic pain" on the "psychological disorder!!!!!  Urrrrrgggggghhhhhh, I hate that crap!!!!!!!!  Can't explain it ----> blame the patient, and call it psychological.  Uh, Miss Neurologist all of those neurotransmitters  you'd be referring to that work in "psychological disorders"

Serotonin--mood, sleep-wake, yes, to a small degree, pain, symptoms of depression, anxiety, OCD, treatment of schizophrenia, temperature regulation, sexual behavior, appetite, learning, memory, endocrine functions, muscular functions  but I think that is plenty to list and prove that this one brain chemical as she so patronizingly said  said.
GABA-inhibitory neurotransmitter (btw, the only one she could throw at me that acts dually with pain and psychiatriac disorders, and while we're at it, since you're a neurologist, I prefer the term "neurobiological disorders."  ******
Substance P-Yes, also pain, also has many other functions: immunological and platelet function just for starters!

I could play war, but then you've just won.  Go screw.  But I will have to talk to Lisa before the appointment and just say "hey, we've not been able to make it official."

But fudgin-A, I am so sick of having to prove it all, and prove this, and prove that.

I hurt, I can't sit at the computer without falling asleep.

I need to crash, and I friggin hurt, so break time!!!

Ok, Education.....now the FUN BEGINSSSS!!!!!!!!!!!!!

Ok, a Day in the Life of someone with RSD and ME?

The day with or without four very HOT looking firemen/medics in my living room?

Oh, of course I didn't notice just how how hot they were until they were getting ready to leave!!!!
But a chick can enjoy herself nonetheless.  Oh, and to think I used to be as physically agile as they were!!!  I would swim laps and then I would do a 5,000 yards in less than an hour.......

But this is how my life is to be with RSD + ME = NOT MUCH PROGRESS

It's hard living with RSD and ME, because you have a low cardiac output--your body pumps very little blood into the chambers of the heart, and then you of course deal with the pain.  If I had to describe RSD paid I would say it's like being lit on fire---or like you are being experimentimented on with hydrochrochloric acid and it's poured on your skin, and every time it heals, then you get more poured more on

But then you have the doggonne RSD and ME--good days and bad days.
Days where you can tackle most of the the household chores.....

Others where you just cannot deal with it...


Did you now that kitties can be service animals????

Well guess what???  Cats can hear almost as well as well as dogs, and they can smell 300 times as well as humans....

And when we're in pain for example, we give off scents, and this big guy (all 15.15 pounds of him--he's not fat the vet said, he is just a big catz) lets me know, so I can "prepare for a   flare....."

Read up while you can....

Read up while you can...........


Cuz once I rest up, I am gonna be ALL OVER THIS one!!!

Maybe audio!!!

Maybe a video--might break the webcam!!!!

But seriously, this one--you try RSD   AND  ME!!!!!
Got a few initials for that, but not nit nice!!!!


I WILL BE BACKKKK!!!!!

International Consensus Criteria Published for Myalgic Encephalymyelitis

- http:- Research1st//www.research1st.com -

International Consensus Criteria

Published for Myalgic Encephalomyelitis

Posted By Kim McCleary On July 25, 2011

On July 20, 2011, the Journal of Internal Medicine  By K. Kimberly McCleary, President & CEO e-published ahead of print “Myalgic Encephalomyelitis: International Consensus Criteria.” The panel of authors, led by coeditors Bruce M. Carruthers, MD, CM, FRCP(C) and Marjorie I. van de Sande, BEd, GradDip Ed, includes 26 authors from Australia (3 authors), Belgium (1), Canada (4), Chile (1), Ireland (1), Italy (1), Japan (1), Korea (1), Latvia (1), New Zealand (1), Norway (1), the United Kingdom (2) and the United States (8). The paper specifically cites 123 publications to support its recommendations.

Abstract:

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.

The scope of this paper is limited to criteria of ME and their application. Accordingly, the criteria reflect the complex symptomatology. Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other health care providers, improve consistency of diagnoses in adult and paediatric patients internationally, and facilitate clearer identification of patients for research studies.

Past definitions for CFS and ME/CFS have been designed for either research or clinical settings, although there has been cross-over in how they were and are used. In contrast, the Journal of Internal Medicine paper states: “the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.”

New Criteria Overview

 ^[2]ME is described as “an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.”

Of particular note is that other definitions have established a minimum duration of illness (either four or six months). The new ME definition removes this requirement: “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.” One of the questions arising from the new definition is whether individuals with a more transient illness will be considered to have ME.

Diagnosis begins with assessment of post-exertional neuroimmune exhaustion (PENE), rather than fatigue. “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”

In addition to the required feature of PENE, the individual must have seven other symptoms: three that demonstrate neurological impairment; three that demonstrate immune impairment; and one that demonstrates energy production/transport impairment. These are described more fully below. The term “atypical ME” is used when an individual “meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases."

The paper provides severity subgroups: “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME.

Mild: approximately 50 percent reduction in activity;

Moderate: mostly housebound;

severe: mostly bedbound;

Very Severe: bedbound and dependent on help for physical functions.”

Special considerations are noted for making the diagnosis in the pediatric setting, including guidelines about distinguishing ME from school phobia.

The following co-occurring conditions are identified: “Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.” From reading the text, it does not appear that this list is intended to represent the only comorbid conditions that should be considered. For instance, specific forms of orthostatic intolerance (postural orthostatic tachycardia syndrome and neurally mediated hypotension) are referenced in the description of energy production and transport impairments.

Symptom Clusters

^[3]In addressing exclusionary conditions, the authors state, “…exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated.

Primary psychiatric disorders, somatoform disorder and substance abuse are excluded.

Pediatric: ‘primary’ school phobia.”

As stated earlier, the central feature of ME under this definition is post-exertional neuroimmune exhaustion (PENE). To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

“Characteristics are:

• Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as es activitiof daily living or simple mental tasks, can be debilitating and cause a relapse.
• Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
• Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
• Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
• Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

^[4]The individual must demonstrate neurological impairment by meeting a total of at least three symptoms from three of these four categories:

1. Neurocognitive impairment

• Difficulty processing information: slowed thought, impaired concentration
• Short-term memory loss

2. Pain

• Headaches
• Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates
• Sleep disturbance
• Neurosensory, perceptual and motor disurbances
•        Neurosensory and perceptual
•        Motor

^[5]The individual must demonstrate immunological impairment by meeting a total of at least three symptoms from three of these five categories:

• Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
• Susceptibility to viral infections with prolonged recovery periods
• Gastoinestitnal tract
• Genitoruinary
• Sensitivities to food, medications, odours or chemicals

The individual must have one of the following symptoms that demonstrate energy production/transport impairment:

1. Cardiovascular

2. Respiratory

3. Loss of thermostatic stability

4. Intolerance of extremes of temperature

^[i^6]Further descriptions of each of these symptom clusters are provided n Table 1 ^[7] that accompanies the text. (Table 1 has been reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.)

The authors also provide additional directives for applying these symptom lists in clinical settings vs. research settings. The panel is at work on Physicians Guidelines and an International Consensus Symptom Scale. They specifically state that only subjects who fully meet ME criteria should be included in epidemiological research.

What’s Next?

Acceptance for particular disease definitions may come by several different routes. The most common route is for an authoritative institution to lead and “sponsor” development, publication and circulation of a definition. The 1990 American College of Rheumatology criteria for fibromyalgia ^[8] is one example. This ME publication was developed as an independent effort, free of sponsorship. The panel reflects diverse expertise and experience with CFS, ME/CFS and ME; however, none of the participants represent professional organizations, funding agencies or policy-making institutions like the National Institutes of Health and U.S. Centers for Disease Control & Prevention in the United States or the Medical Research Council in the United Kingdom. Such participation might have added  clout that “can institutional level, however it might have also resulted in a different ” that could influence more rapid acceptance and utilization in a different product.

While it lacks the implied institutional endorsement of the 1994 criteria for CFS led by authors at the CDC, this consensus report has a major advantage over the 2003 Canadian clinical criteria for ME/CFS with its publication in a journal with wide circulation in the medical community. (The Journal of Internal Medicine has an impact factor of 5.935, compared to the now-defunct Journal of Chronic Fatigue Syndrome that was never linked to PubMed.) The version published electronically on July 20, 2011, is a provisional paper, with the final version due out in print later this year. It will be interesting to follow formal responses that may be generated through Letters to the Editor and other commentary and analyses, particularly by those who have worked on earlier case definition efforts for CFS, ME and ME/CFS (CFS/ME). The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports.

It is hoped that this consensus report will be broadly viewed as a positive development in the effort to identify criteria that enhance patient care and research. The response so far reflects a mostly enthusiastic reception, although there is some disappointment about the lack of objective measures to support symptom criteria. The paper provides a theoretical construct, with no data provided to demonstrate whether application of this criteria set results in a more homogeneous patient population than other criteria. There is also some concern about the possibility about the possibility that the following statement in the paper’s Conclusions might have the unintended effect of jeopardizing or impeding access to or payments from government and private insurance coverage systems that do not presently recognize ME: “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.” In the United States, most systems (including Social Security) utilize the 1994 CFS definition by Fukuda et al. rather than the 2005 empiric definition by Reeves et al., but the ambiguity about which one constitutes the present “CDC definition” gives rise to concerns about the impact of this statement when applied in the medical-legal context.

The CFIDS Association considers the ME International Consensus Criteria to be an important publication with potentially far-reaching implications for research, policy and education. We are reviewing it closely and will be seeking input from our Scientific Advisory Board ^[9] (three members of which are authors on the paper) and others about how these criteria might impact comparability with existing literature, funding, health care delivery, reimbursement, disability payments/applications, general awareness and understanding and a wide range of other practical issues


Reference:
Myalgic Encephalomyelitis: International Consensus Criteria. Bruce M Carruthers, Marjorie I van de Sande, Kenny L De Meirleir, Nancy G Klimas, Gordon Broderick, Terry Mitchell, Don Staines, Peter Powles, Nigel Speight, Rosamund Vallings, Lucinda Bateman, Barbara Baumgarten-Austrheim, David S Bell, Nicoletta Carlo-Stella, John Chia, Austin Darragh, Daehyun Jo, Don Lewis, Alan R Light, Sonya Marshall-Gradisbik, Ismael Mena, Judy A Mikovits, Kunihisa Miwa, Modra Murovska, Martin

L Pall, Staci Stevens. Journal of Internal Medicine. Accepted Article, July 20, 2011 doi: 10.1111/j.1365-2796.2011.02428.x

K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.

Note: Post updated on July 27, 2011 to add link to Table 1 (http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf ^[7]) reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine.

Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.

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Flare has hit landfall--I can see it, you can't?

Oh, holy shit, I am hurting bad......like a MF.

Head to toe.  ME is not without pain, and right now, I feel the RSD and the ME...

The ME robs me of brain cells.

The RSD robs me--oh, that fucker is the ULTIMATE thief!!!!
My face hurts,
My shoulders hurt,
Me legs hurt and and hands, armms,
wrists, back, and oh, holy God, there
ain't one single part of me that doesn't hurt.

How fast CAN THIS SPREAD--JUST CURIOUS?